That's Life

First Time

2012-01-31T19:10:00.000-08:00

This morning marked the first infusion through my implanted port. I was a little nervous getting ready this morning. I had heard that it only hurts a little, but isn't that what doctors always say? The traffic caused by the foggy weather did not help the anxiety any.

I waddled to the elevator after getting to Mercy Midtown, and took my favorite seat at the infusion center. The charge nurse asked which me which arm I would like warmed up. Normally, it takes hot blankets, 6-7 needle sticks, and me almost passing out to find a vein. I smiled and pointed at my chest, and she remembered that I had scheduled the port install after my last infusion. That brought a big smile to her face, and talked for a couple minutes about how the surgery went.

Huber needle

The area around and over the port was swabbed with Chlorhexidine (an antiseptic), and allowed to dry. I was told to take a deep breath, and in went the Huber needle. It stung a little bit, but was less painful than a successful IV stick. I've read that once scar tissue has a chance to build up around the port, the sticks are barely felt. I hoped that not having to deal with multiple needle sticks might eliminate the nausea that I have felt with treatment since I got pregnant. I tried to fight off the feeling, but gave in and asked for Zofran about twenty minutes into the infusion.

The bolus dose of Zofran made me fall asleep, and I kept waking myself up by snoring (and snorting). I had headphones in so I couldn't hear how loud I actually was, but I hope it wasn't too bad. Luckily, I was the only patient for most of the day. Somehow, I managed to sleep off and on for about two hours. That was another first - I've actually never slept in the infusion room, either. At least I'm not the first to saw logs. Usually the male patients use their treatment time to nap, and laying back in the recliner seems to make all of them snore. I have to say that it was SO nice to have pain-free, IV-free hands. I was too tired to knit or do much else, but it made eating lunch and using the restroom easier.

What an accessed port looks like.

Removing the Huber needle and flushing the port was just as easy as the needle stick. I normally can taste the saline flush, but with the port, it tasted as if the nurse squirted the solution straight into my mouth. The Heparin was even worse - it tasted like I had licked an aspirin. I took a deep breath after the flush, and the needle was out. It sounds odd, but I am actually looking forward to my second day of treatment tomorrow instead of dreading it like normal.

I would like to think that this year will be better. That we'll receive more blessings than not. Not dealing with around 18-21 sticks, multiple bruises, and the pain that comes with it is a blessing. Feeling my son wiggle around inside of me is definitely a blessing. Before I know it, he'll be in my arms. I can't think of a better blessing than that.

Tick Tock

2012-01-21T22:16:00.000-08:00

We spent the day moving around furniture to make room for baby. Actually, Adam did most of the work. Having your pelvis move apart too soon means that your mobility is limited. I mostly organized drawers, oiled some furniture, and supervised. After finishing, though, I realized that this week would likely have brought the arrival of Avalon had things gone differently. I have made peace with the loss, but milestones like the due date are still a little difficult. Every kick and stretch that in my belly is reassures me that this time will be different. Even though it seems surreal, we will have a baby here in about seven weeks.

I also spent a good portion of the week going to and from Mercy San Juan. The incision on my neck (over the Jugular) opened up over the weekend, and was gaping by Monday. Unfortunately, the interventional radiologist was out of the office one day, and running late the next. Despite that, I ended up lucking out with no infection despite the wound coming open. I also found out that I have a new allergy to Neosporin after applying a little to the dressing over the opened wound. My neck started burning when I put the bandage on. When I removed the bandage, I found blistered, angry skin in the shape of the gauze. One more thing to add to the list of things I'm allergic to. (That includes most adhesive tape/bandages, sulfa drugs, tetanus vaccines, and now Neosporin.)

I am looking forward to the coming weeks. We are hoping and praying for a calm, natural birth and recovery, and a healthy baby. Wish us luck. :)

In the Jugular!

2012-01-04T17:41:00.000-08:00

It has been a long time since I've been active here. I really should work on that. Today I had a procedure to install a port that will make blood draws and IVIG much easier. (And much less painful!) During my November infusion, the infusion nurses told me that it was time to consider a port as soon as possible. My veins were getting more difficult to access, and the damage to the veins made IV placement more painful. By the end of my three day set of infusions, I would be bruised, very sore, and without any good IV sites left. Having a nurse look at my feet and shoulders for an IV site was all the convincing that I needed.

I thought that getting a port might be an issue because of the pregnancy. When I told my neurologist's assistant that a port had been recommended by the nurses, the assistant said "okay, let's get you scheduled." Considering that it wasn't really urgent, it was the holiday season, and that neurology doesn't normally order ports, things moved pretty quickly. I had a surgery date scheduled, and we went from there. Well-meaning friends and family have asked if it was a good idea, if it was safe, or if it could wait. Every medical professional I have spoken to about the port said that it couldn't wait. They need good access to my veins, especially with me being pregnant. The risks of the procedure are outweighed by the benefits of having easy access to my veins for treatment and in case of emergencies.

The thought of having a surgical site near my face made me a little nervous. I am claustrophobic, and the idea of drapes over my face freaked me out. Luckily, I would be given conscious sedation to help with the nerves. Since I don't need chemo or radiation (the most common reason for a port), the radiologist chose a Vaxcel port with valve by Navilyst. I was draped, scrubbed, and had a local anesthetic injected into my chest and around the Jugular vein. The interventional radiologist made an incision above the Jugular, and in my chest wall. The catheter was run through the Internal Jugular, and down towards my heart. Through the incision in my chest, they made a pocket and sewed the port in place. The port was connected to the catheter, the catheter was flushed to test function, and the incisions were closed up. Unfortunately, my muscle tissue is very tough from having Stiff Person Syndrome, so I kept feeling pinching as the radiologist worked. They did their best to numb me and finish up as quickly as possible.

Vaxcel Port Positioning

After they got a chest x-ray to verify placement (with my belly shielded well), I was brought back into the nurse's office to meet up with Adam. The radiology nurse gave me some grape juice to get my blood sugar up, and talked with us about caring for the incisions and port. I'll have to have the port flushed when I go in for my infusions every five weeks, or once every four weeks if it isn't being used. I'm covered up with gauze and Tegaderm, so I haven't seen what things look like yet. I'm interested to see how much of the port is visible under the skin. I was told to expect some pretty colorful bruising for awhile. Oh, and I can't shower for at least two days. After that, I'm supposed to cover the Tegaderm with plastic wrap until the incision heals. If anyone can figure that out logistically, please let me know. I have no clue how I could manage to pull that off. Sounds like sponge baths and a trip to the hairdresser for a wash or two.

Once we got out of the imaging center, it was time for food. Fasting for that long stinks normally, but it is rough being pregnant. We ended up at Fuddruckers to feast on what had to have been the best burger ever. I'm currently propped up in bed, watching crummy daytime television. So far the lower dose of Vicodin is making the pain manageable. I'm crossing my fingers and praying that it is tolerable tomorrow, when the bruising should show up.

All in all, I'm happy. Dealing with literal pain in the neck for a few days is better than dealing with stick after stick in my hands. (And soon, who knows where else.)

Mommy Time

2011-10-06T00:25:00.000-07:00

This morning I woke up to what felt like two hot rocks pushing on me. When Adam came in the room, I realized those hot rocks were two not-so-little-anymore feet. Emma woke up during the storm last night, came in the room, and said "I need mommy time." She curled up next to me, and was out. Adam moved her out of the room at some point, and she came back in about a half hour later for more "mommy time." It was all fine until she tried to push me out of the bed during her sleep.

The night before, she woke up hungry. Then she thought her pillow was a skeleton, and came out of her room scared as can be. It took awhile to for her to understand that the reason her tummy hurt was that she was hungry. Then it took forever to figure out what she wanted to eat. After that, she still had to calm down from the fear of her pillow shape-shifting and coming to get her. She keeps asking to go back to the Halloween store, but I think we might just have to hold off on that for awhile.

The little one is proving to be just as active as his big sister was while she was baking. Emma thinks it is awesome to talk to my belly. It is cute as heck, but it wakes up the baby at the precise time that I'd like to be getting to bed. He moves, and dances, and wiggles around for what seems like forever. It is cute and reassuring, but I definitely can't sleep through it. I can't wait until she can feel him kick. She'll enjoy that. :)

Sweet, sweet relief!

2011-10-01T20:11:00.000-07:00

Yesterday I went to see the nurse practitioner over at Mercy. She is the sweetest thing ever, and she's also the only nurse they have in the Sacramento area that can do an occipital nerve block. Before getting started, she came in, gave me a big hug, and asked how my family was doing. She spent a few minutes talking about my pregnancy and how that was going. THEN we went into the headaches. Now, how often do you get that kind of bedside manner? I know that I'm a bit of a "special" case with such a rare condition, but I am SO happy to have caregivers that CARE.

The injections go into my scalp, near the occipital nerves. Spasms and rigidity irritate the nerves, causing me to get raging migraines. Right now we're trying to take the safest route, and injected steroids pose MUCH less risk than narcotic painkillers. Only about 1/1000th of a dose (or less) crosses the placenta with steroids. They've also been around for ages, so the safety in pregnancy is pretty certain. Anyways...

The nurse injects a mix of Solumedrol (the steroid) and Lidocaine (an anesthetic) into the muscle that covers the occiput (the back of your noggin). I get a muscle knot near that area, and it has been huge lately. We chose to inject 2/3rds on that side, and the other 1/3rd on the other side. It actually hurts a lot less than you'd imagine. It isn't any worse than a flu shot...if you have a good nurse. She warned me that I might bruise a little more this time because of the extra blood pumping through my system.

I went home and iced my head, and looked forward to the sweet relief. After having a migraine every single day for a month, anything was better than nothing. I just realized that while my head is sore and bruised today, I haven't gotten a migraine. Not even a hint of one! As much as I hate having to take medication to feel better, I have to love that.

The colors of the rainbow...so pretty...in the sky

2011-09-29T19:11:00.000-07:00

This week has had the usual challenges. The stiffness. The rigidity. The walking in wet cement feeling. The headaches. All in all, this week actually hasn't been so bad. We saw our little boy dancing around in my womb, and fell madly in love. The little flutters I felt have turned in to little kicks. Some of the fear of losing another little one is starting to melt away. It isn't gone, but the pain isn't so fresh.

Despite her shock at discovering that she was having a brother, she has also fallen madly in love with him. She has been talking to my belly, and giving me two kisses at night instead of one. One kiss is plopped on my belly, and rubbed in with her hand. That kiss, she tells me, is for the baby. Once this week, she fell asleep with her head against my belly. She told me that she wanted to cuddle with her brother. My heart can't help but melt at how precious it all is.

Our sick little silkie is getting better, but slowly. She has wry neck, a condition that causes their neck to flop over. In many ways, it is similar to the issues I deal with in regards to my muscles. If she is startled, she'll lock up and her neck flops to the side. The episodes are getting shorted and less frequent, though. She's still getting her vitamins twice a day, and gets to sun herself in front of the window during the day. I pray that this little one continues to improve. She's (or possibly he) is such a sweet little thing. (It is difficult to sex silkies before they are about ready to crow or pop out eggs, unfortunately.)

I check in with the nurse practitioner at the neurology office tomorrow. I'll probably get my Solumedrol injections. They were approved by the perinatologist, and they do help with these migraines. Speaking of migraines...they have been constant the past month. They are getting better, but very slowly. I can't wait for the injections. You heard me - I can't wait to have needles in my scalp! We'll schedule my infusion at that time, as well. I'll hopefully get the infusion around the second week of October.

Before the infusion, I get to shoot some maternity pictures for my cousin. It is an honor and a pleasure to take those pictures for her. We're trying to decide on a park, and work around the rain next week. I love the post-processing part of things, and can't wait. :)

By the way, we saw the most beautiful rainbow in the sky above our backyard this past week. When I can, we take walks to see the sun setting over the fields. Emma and I talk about what colors God used to paint the sky that night. It doesn't get much better than that.

A boy!

2011-09-27T15:51:00.000-07:00

Holy cow! I'm the mother of a little boy now! I never imagined us having a boy. With Emma, I was SO sure from the beginning that we were having a girl. Sure enough, she was. This time, I didn't have that feeling. I thought maybe it was a girl, but just didn't have that 100% sure feeling. With this pregnancy, we realized that I would be far enough along by our wedding anniversary to find out the sex. It would be our little gift to each other.

To be honest, I have a little disconnected from this pregnancy. After getting pregnant right after a miscarriage, I have been a little afraid that something would go wrong. I finally started is feeling like this is a little more real when I felt little rolls, stretches, and kicks. I knew that the scan would be a good thing for me emotionally.

Adam scheduled the appointment, and surprised me by asking for a 3d scan. With Emma, I had an anterior placenta. That means that the placenta is sitting in the front of the uterus, and it often interferes with a 3d ultrasound. We were hoping that we might get the 3d scan this time.

Emma has been feeling left out because the OB's office does not allow kids over 6 weeks old. We decided that we'd do the scan at a private ultrasound office rather than the OB's office for this reason. Mom met had a break in between teaching classes, so she met us for the ultrasound. We chose the same business that we went to find out the sex with Emma's pregnancy, and got the same tech. He has been at it for over 25 years, and he can tell the sex right away.

The tech tried to get a 3d view, but our little baby has been head-down since very early on. Our 6 and 8 week scans also showed a head-down position. Unfortunately, because the baby was head-down, there wasn't much amniotic fluid between the baby's face and the uterine wall. (The uterus is still pear-shaped at this point.) The 3d view looked something like this, but with slightly scary and cavernous eyes:

There's a chance we might be able to see the baby's face in 3d when we get our anatomy scan in four weeks, but it is never a sure thing. Instead, we went ahead with the 2d ultrasound. Our little baby enjoyed the orange juice I had before the scan, and was bouncing around like crazy. When the tech said "it is a boy," we were a little shocked. For the adults, it was a happy sort of shocked. Emma was a little confused, disappointed, but also excited all at once. The tech showed us a few different angles and explained the difference between how boy and girl parts look on ultrasound.

Before we left, he measured the baby's head to estimate the age. Our little boy was measuring 8 days big, or 17w2d instead of 16w1d. Our family grows big babies without any help from diabetes, so this wasn't much of a surprise. Only about 24 weeks left until we meet our little guy! Enjoy the video. :)

Ding!

2011-09-13T00:18:00.000-07:00

After a couple weeks of sugar hitting the fan, today was a welcome break from craziness. That is, what I'd consider a break...things are always a little crazy around here.

Saturday left me feeling sore and pretty tired. I started to get a headache, and it just got worse, and worse, and worse. I woke Adam up at 5 am on Sunday because I just couldn't sleep. The headache was pretty horrible at that point. He offered to take me down to the hospital, but I was being stubborn. By 7 AM, I gave in and got myself dressed with my eyes shut. It was just too painful to keep my eyes open. I've also (unfortunately) figured out the best time frame to go to the emergency room at Mercy San Juan if I absolutely have to.

We lucked out and only had one person ahead of us for triage. They were afraid I was having an allergic reaction, and had me in a bed within a few minutes. I don't like the fact that I have to take some prescription medicines to get by with the muscle stiffness, but I was willing to take whatever they could safely give me for the pain. That they did. I was pumped full of a few different antihistamines, anti-nausea medicine, and morphine. (Hard to believe that one is approved in obstetrics, but it is.) That failed, and later on they gave me a different painkiller. After watching me for several hours, I was told that my labs were fine, and my neurologist said that I could continue my treatment. I was glad to get out of there and climb into my own bed. The headache is still there after three days, but I'm managing. There is a chance that I have a mild case of aseptic meningitis, and the only real treatment is to treat the symptoms.

I did say that there was a happy ending to this - and there is. My infusion today went pretty well. Aside from the headache and expected muscle aches, I haven't had any reactions. The nurses took blood today to check my liver enzymes after the treatments Thursday and Friday. Adam got a call during my appointment today to let him know that my labs came back, and my liver enzymes were looking great. When we were walking in the front door, they called back to let me know that they'd be calling in two weeks to schedule my next round of infusions. Since the infusions have started, I have needed less medication to get by, and I haven't had any spasms that locked me in bed. After two straight weeks of serious spasms, this is a very welcome break.

I am so thankful for finally finding a medical team that is understanding and really cares about helping me feel better. I'm thankful that they're doing all they can to make sure I'm comfortable and that our baby is able to grow healthy and strong. I am thankful for each and every of the thousands of donors that give their time and the plasma that is used to make gamma globulin infusions. I thank God for helping my body to get through this treatment without any serious reactions.

back for another round

2011-09-09T21:01:00.000-07:00

Today was the second day of three days worth of IVIG infusions. Yesterday left me with a migraine that fortunately went away with a little sleep. Little sleep is what I ended up with, though. I woke at 2:45 and wasn't able to get back to sleep. I managed to get a bath with the saline lock in place, and headed off to Mercy Midtown.

Unfortunately, keeping the saline lock in did no good. As soon as the nurse started flushing the line with saline, my arm began to burn like crazy. I asked if it was infiltrating, and the nurse said it likely was, and definitely was not returning blood like it should. She wrapped up my arms in toasty blankets, and let me sit for a few minutes. The second line went in my right hand...not the ideal placement, but often it is the only place where a vein can be felt. I had a little brush with wooziness, which is a lovely leftover from being traumatized by so many phlebotomists that just don't listen about where they need to stick me to get blood. (If I ask you to go for my hand, please don't insist on digging around blinding in my arm with a needle. It hurts. A lot.)

Adam and Emma were off to Sutter's Fort for her first kindergarten field trip, so I kicked back with some Jimmy Buffett and Bob Marley on my iPod. I really wanted a nap, but the center is too bright, and folks are always coming and going. Somehow most of the other patients nap...and snore. One man had napkins on his chest to catch the copious amounts of drool leaking from the corner of this mouth. (He wasn't the patient, either.)

I knit another little hat, and that seemed to interfere with the infusion pump. The pump was finicky and kept beeping to alert the nurses of an occlusion. Actually, it beeped anytime I got up to go to the bathroom, worked on knitting, or sat there doing nothing. I think it just didn't like me. I have to wonder what the other patients think when I'm wheeling around my iv pole with two pumps on it. Do they wonder what the heck brings a pregnant woman to the chemo center? I know that I definitely look further along than I am, because I keep being asked if I know the sex yet. (We're still at least two weeks away from that.)

As far as side effects, I am definitely doing better than last time. No blinding migraines, no vomiting, no severe pain, etc. I feel exhausted, weak, and flu-like...but it is manageable if I rest and drink plenty of water. I had to skip my cousin's shower...and I really didn't want to do that. It probably was a smart idea to just stay in bed and rest, especially since I'm dealing with growing another life this time around. I have the weekend to rest, and then I get the last infusion for the month. I am praying that my liver tests come back within the reference range, or at least close to the range. I'm also praying that this infusion will allow me to cut back on other meds that are more risky to baby and myself. If you're the praying type, please send up a little prayer for us.

Day One - Done!

2011-09-08T16:56:00.000-07:00

Today was the first of three days of infusions. We chose to use the infusion center in midtown instead of the infusion center that is only ten minutes. (For some reason, the closer infusion center insists that I have to pay 90%, but we ended up not having to pay anything last time.) The nurses at the center are all very sweet, and it is as comfy as it could be. I kick back in a recliner with a blanket for a few hours, eat my lunch, listen to music, or read a book.

This time around, we decided to switch to a different IVIG formulation. Instead of Gammagard, I got Gammunex-C. Gammagard is known to have more side effects, and many that switch to Gammunex find relief from the often horrible side effects. Last time, I was almost rushed to the hospital for fear of aseptic meningitis. I also got very sick on the second night and couldn't keep anything down. My liver did not respond well, either.

I premedicated this time with Tylenol, Benadryl, and a little Prednisone. When I showed up to for my treatment, my blood pressure was 150/99 and my pulse 130. Holy cow! I was nervous as soon as I woke up, since I had no clue how I would react. The nurse left me for ten minutes to see if it helped, and my blood pressure and pulse started to go down. Once the Benadryl kicked in, I was calm and my blood pressure and pulse were back within a healthy range. Because there is a small chance of serious side effects such as anaphylaxis, I get the roomy area right next to the nurses station.

For whatever reason, the infusion took twice as long as the neurologist's office had told me. I don't really mind, because a slower infusion usually means less side effects. Adam and Emma were a little antsy, though. They walked around the building, played video games, and poked in every hour or so to see how I was doing. I managed to knit a nice, thick baby hat while I was relaxing. I tried to read, but I kept reading the same words over and over. Next time I need to get some "fluff" books that don't require any thinking. I also flipped through the stash of magazines. I would have liked to catch a nap, and a few patients were sawing logs. Too bad I can't sleep unless it is quiet and dark. :o/

Tomorrow I'm set for another five or so hours of infusion, and Emma and Adam will be off to Sutter's Fort for her field trip. Wish me luck!

Herbs and Pregnancy Nutrition

2011-09-04T22:43:00.000-07:00

When I was pregnant with Emma, I didn't have much of a chance to enjoy herbal teas and infusions. I was just plain sick and exhausted. With Avalon's pregnancy, I got back to enjoying herbal teas. Unfortunately that pregnancy didn't last, but infusions of lemon balm from our garden helped my nerves as well as Adam's. It was the calming effect that I needed during the first two weeks when life felt so surreal.

After the miscarriage, I started taking red raspberry leaf again. I also added vitex and red clover, in addition to my whole-food prenatal and cod liver oil. The only synthetic vitamin I took was B6, which I needed to lower my homocysteine levels and prevent morning sickness. Wouldn't you know it - I was pregnant three weeks after the miscarriage. I was shocked. It took over 9 months to get pregnant with Emma, and 13 months with Avalon. My Ob had mentioned that I'd likely get pregnant in the three months following the miscarriage, but I honestly didn't believe it because of the fertility issues. Was it the herbs? I have a feeling that at least part of it was. I had a strong uterine lining and healthy corpus luteum cyst only three weeks after miscarrying - something that was an issue while pregnant with Avalon.

After I got through the first trimester nausea this time, I ordered fresh herbs for infusions. In a quart jar, I add about 1/4 cup of this mix and cover with lightly boiled water. The lid is put on, and the jar sits for 5-10 hours to steep. Infusing over several hours allows more minerals and vitamins to be released from the herbs.

Here is my pregnancy tea recipe:

2 parts nettle leaf (high in vitamins and minerals, supports kidneys and vascular system)
2 parts red raspberry leaf (tones uterus, high in vitamins and minerals)
2 parts dandelion leaf (high in vitamins and minerals, supports liver and GI system)
2 parts lemon verbena (calming, anti-spasmodic, supports digestion)
2 parts oat straw (high in calcium and magnesium, calming)
1 part rose hips (high in vitamin C, anti-inflammatory)
1 part ginger (supports digestion, anti-inflammatory)

I am preparing for another round of IVIG this week, and have altered my recipe a little for this week. Here it is:

1 tsp rose hips (for the vitamin C & anti-inflammatory effects)
1 tsp ginger (for taste and anti-inflammatory effects)
2 tbs oat-straw (for nutrition, anti-inflammatory effects, and calming effects)
2 tbs dandelion leaf (for nutrition, liver support, and GI support)
2 tbs lemon verbena (for calming effects, possible migraine prevention, and taste)

Light as a feather, stiff as a board?

2011-09-03T21:05:00.000-07:00

The past couple weeks have included daily spasms that are...well...fascinating and painful at the same time. My body isn't quite sure how to handle the changing hormones, the belly that makes me look five months pregnant, or the decrease in medication. I've been a lump on the couch, but to be honest, that's okay. One side effect of the flare-up and the increased metabolism from pregnancy? I haven't gained any weight. (No clue how, because my stomach is huge.)

By the way...Halloween is rolling around the corner. I think I might have found the grossest pregnancy costume online. I bet Adam would beg to differ. Zombies freak me out.

13 down, 27 to go

2011-09-02T23:15:00.000-07:00

This weekend marks our little gummy bear's 13th week...or 11th if you go off of gestational age. The little bear feels more like a gold fish that only seems to flutter around if I'm trying to sleep. I didn't notice flutters with Emma. She went straight to hard kicks at 14 weeks.

While we were waiting for Emma's books and materials to arrive, we decided to work on what we could. She's completed two art lessons, and sailed through an entire math unit in two hours. I have a feeling that the math is going to be like that, and we may have to move on to something a little more challenging. When Emma's books finally arrived today, she was squealing like crazy. The UPS driver let out a chuckle at the sight of her bouncing up and down on the front porch, squealing and yipping and letting out a big "Woohoo!"

The school sent a LOT of stuff. Seventy-five pounds or so of books, manipulatives, DVDs, Cd's, art supplies, science supplies, etc. So far, we're are very pleased with the curriculum. The program is a little intense when you look at the schedule, but at this rate, it won't be so bad. Emma gets language arts, phonics, handwriting, and mathematics daily. Science, history, art, and music are twice a week. She also is expected to have 120 minutes of physical education a week. We're allowed to work at our own pace, provided that we finish the coursework each trimester. Emma is loving the combination of computer and hands-on learning.

Next week...well, it is going to be interesting. Neurology ordered Gammunex for my infusion, but because of the holiday, it won't be in until Tuesday or Wednesday of this coming week. Oncology called to say that they may call for a same day appointment when the medication comes in, and to be prepared. That leaves me drinking water like a whale. The more hydrated you are, the less side effects you have. This time I also requested a bag of fluids to be infused at the same time as the Gammunex, as extra protection. I'm going to premedicate with Tylenol and Benadryl as other patients have suggested.

This infusion is a completely different formulation, so I have no clue how I will be feeling. Last time I had a horrendous migraine the first day, and serious stomach upset the second day. I also had liver enzymes at twice the reference range. I've read that Gammunex often has fewer side effects, but it depends on the patient. I do know that I am likely going to miss the orientation for Emma's school, her first field trip, and possibly a family get-together for one of my favorite people. I got the side-eye for not resting enough after the last infusion, and I have a feeling I'm going to get the riot act if I don't rest since I'm pregnant this time. I don't want to miss those moments...but I don't have control over this crummy condition.

Here's to the best week possible, and may I get a good infusion nurse. (And my favorite chair in the corner!)

Ah, push it!

2011-08-30T23:02:00.000-07:00

The past couple weeks have been a little crazy, but when it comes down to it, things are going pretty well.

-We traded our last two Hamburg pullets for a Light Sussex pullet and a Barnevelder pullet. (Interestingly, we sold Light Bulb to the same man a couple months ago, and recognized him when we got there.) They were a little younger than I expected at around 10 weeks, and they were pecked pretty badly. They looked healthy aside from the pecking, so I decided to go ahead with it. We explained to the breeder that the chicks likely needed more protein and something to keep them busy if they're going to be caged. Hopefully it will help, but who knows.

Obviously his chickens aren't pets, they're livestock. I get that, but it really has to be uncomfortable and itchy to get plucked and try to regrow feathers. We took the chicks home, gave them some probiotics and electrolytes in their water, and coated their naked backs with Rooster Booster Pick No More Lotion. They perked up and have been singing contentedly ever since. We've had them for a week, and they are growing back their feathers. Hopefully they can go outside around the same time as our silkies, which should be in the next couple of weeks.

-I got my neurology appointment taken care of. I've been putting off the appointment for awhile because I needed my perinatology report. I saw the doctor's assistant this time, since I can get in next day compared to a two month wait. She gave me a big hug and congratulated me on the pregnancy. We went over the report, discussed our options, and she's going to schedule IVIG for this week or next. We're going to try a different formulation and additional fluids to see if that helps with the side effects. I am praying that my liver enzymes do not spike like they did last time. IVIG is the safest option right now for baby and I, even though it isn't the most convenient or comfortable. I'm also praying that the side effects are not as bad as last time, since the infusion nurses will be less inclined to treat the side effects aggressively.

-My doctors are all on board with a VBAC this time 'round. If I'm feeling good, there is no reason that I can't try, and I am a good candidate for a VBAC. Obviously, if I'm spasming and walking like Quasimodo, I realize that I won't be effective at pushing. Nobody is concerned about macrosomia, either. (Macrosomia is defined as a baby bigger than 8.8 or 9 lbs, depending on the source. Emma was 9.9lbs at 39 weeks.) I'm tall, I'm not a little thing, and there is no worry that my pelvis is too small. Fat smushes, anyways.

- Emma's curriculum and supplies have shipped! We should be getting over 70 lbs of goods this Friday, and then we can jump head first into Kindergarten! Emma is very excited, and can't wait. The first field trip is on the 9th at Sutter's Fort, and we're planning on going. It's been a couple years since she's been, and she'll get more out of it this time.

We also set up a nice little learning area in the garage. Adam found an old school desk on Craigslist, and we set up bookshelves with Mom's giant book stash. She's got a rolling container for supplies, and we just need to find space for books and manipulatives. We probably won't work in there all of the time, but it is nice to have a dedicated area for supplies and quiet time.

-We're going to set up an ultrasound for the end of next month. Emma has been bummed to not be able to come to the OB appointments with me. I've already had to ultrasounds, but at the end of September the baby will be developed enough to tell the sex. We are thinking the baby is a girl, but it'll be nice to know. I volunteered to not find out this time, but Adam and Emma really want to know. :)

wishing I was knee deep in the water somewhere...

2011-08-25T15:58:00.000-07:00

Things have been changing since I last posted. Some for the better, some not. Getting pregnant within three weeks of the loss of Avalon has been, to say the least, difficult. It is hard to get excited like I was when I was pregnant with Emma. Somehow through the pain and exhaustion from dealing with hyperemesis gravidarium, I still felt so close to her. I was excited and could not wait to hold her. I love this baby - I do. I just think that the happy kittens and rainbow minutes will be here when the baby is finally in my arms.

I've been trying get by without medication or with very little, and that is physically and emotionally very difficult. It is hard to go back to the constant stiffness, the posture of Quasi Modo, and the pain. It reminds me that I am stuck with this. That I don't know where I'll be 10 or 20 years for now. That I pray every night for some kind of breakthrough or cure.

So far my OB has been great. She sent me to a perinatologist to discuss my medication and treatment, and he gave me several options. He was very concerned about me having a fall, since SPS can cause you to fall like "a tin soldier." The perinatologist said that IVIG is fine as well, as long as my liver can take it. He also was very supporting of me having a VBAC. He saw no issues about me planning for a VBAC, but leaving the option of a c-section open if I have a flare-up.

I've started back on steriods because they are of the lowest risk to the baby at this point. I don't like steroids. Steroids make me feel like crap. Normally I get insomnia and ache all over. Being pregnant, I am incredibly exhausted, achy, and get up to go pee every hour on the the hour when I try to sleep. I wake up dehydrated and spend the day trying to get rehydrated again. Then we start another day.

I see my OB tomorrow, and hopefully I can get a copy of the perinatology report to bring to my neurologist's office. I'm hoping for another ultrasound tomorrow. The doctor mentioned that she'd probably do a quick scan at 12 weeks. I'd like to see where the placenta is positioned this time. Last time it was anterior, and that caused Emma to sit posterior, or "sunny side up." Posterior positioning makes trip through the birth canal much more difficult, though it can be done.

We've had a few little family emergencies in the past couple weeks...and I need a serious vacation. Sing me away, Zac and Jimmy, sing me away.

Poke. Squish.

2011-06-27T20:37:00.000-07:00

After a disappointing check up with my neurologist this past week, I gave Neurontin a go. I tried. I really did. Every time I'd take a pill, even at the very low dose I had been prescribed, I turned into a zombie. I would get up, eat and maybe shower, go back to bed, and sleep until dinner. Then I'd eat and go back to bed again. After several days of this, I decided that I couldn't do it. I also remembered why I stopped taking Neurontin last time - it made me so sleepy. In combination with the benzos, muscle relaxers, pain medicine, it is just too much. Sure, I can live, but that isn't exactly a life.

Adam and I decided that I'd go in for another round of occipital nerve injections, and at the same time, talk to the nurse practitioner about resuming IVIG. When she came in, she gave me a big hug and told me she was so sorry for all that we had been through. She had been one of the first people to find out and congratulate us when we found out that we were pregnant back in May.

The neurology department almost never allows sales people, but by chance, a sales person came by a couple weeks ago with information about a newer formulation of gammaglobulin. She handed me the drug pamphlet to look at, and it was for sub-q gammaglobulin. I would actually prefer sub-q treatment as it splits the monthly dose into four weekly doses that are easier on the body.

The NP is going to look into formulations, talk to a few people, and see if we can't try the sub-q or at least a different dosing method of IVIG. While we don't have much clinical research to go off of, there is anecdotal evidence that splitting up the dose makes it much easier on the liver and kidneys. We'll test right before the dose, and then a couple days after the dose to see if my liver enzymes spike again. If my liver freaks out again, then we don't have many options left to pursue. I don't smoke or drink, and only do prescription drugs...so killing my liver isn't exactly something I want to do at 28 years old. I did feel better after IVIG, so it would be a major setback if that is the case.

I got my occipital injections taken care of, at least. The NP injects Lidocaine and a steroid near the occipital nerve at the base of my skull. It sounds a lot worse that it actually is. This time I was super tight and could hear it. Eww. I feel a little like a bobble head afterwards because of the Lidocaine.

We would really appreciate any prayers. Please pray that I am able to resume IVIG, that it is effective and the side effects are few, and that my liver handles the job without causing my liver enzymes to spike. Please pray that we'll find a solution that helps me to get back to living a more normal life. Thank you to all who read and follow this blog, to those that help us out with babysitting while I'm at appointments, and everyone that prays or sends positive thoughts.

Woohoo!

2011-06-27T11:50:00.001-07:00

We now have half of our flock doing the squat. :) Can I warm up the skillet yet?

Doin' the Squat!

2011-06-25T17:45:00.000-07:00

Snowflake is doing the squat! We're going to have eggs soon. :) When a pullet is getting close to laying, they'll squat down submissively if you reach out towards them. They like their back pet and roughed up a little. In reality, they want some. Yep - naughty girls. I think that over the next month we'll have most if not all of the girls laying. Which reminds me...I need to get some new pictures of the girls in all of their moody, teenage glory.

So far the incubation is going well, too. We installed a fan on the top of the incubator because forced air incubators generally have a better hatch rate. The forced air ensures that the eggs get even heating, and that the corners of the incubator are warm as well. In a couple days we should be able to see the beginnings of embryo growth by candling the eggs. I'll be sure to post pictures when we get there. Emma said we should give Grandma one for her birthday since they'll be hatching out a couple days before. If all goes according to plan, we just might have to let her pick one out.

Don't Count the Eggs in the Bator

2011-06-24T21:44:00.000-07:00

http://thecozynest.com/showgirls.htmAfter trying to find started white silkie or showgirl pullets somewhere within driving distance, we decided to just try hatching eggs. The cost of mailing or driving to get birds out of the top half of California just wasn't worth it. I bid on an auction of 16 eggs from a lady with every accepted color of silkies, and one show girl in Black/Blue/Splash and White pens. The auction said that we'd get any extras that the girls laid the day of shipping. We also won an auction for 6 showgirl eggs, plus any extras. The showgirl breeder also had all of the accepted colors, plus cuckoo. (Imagine our Barred Rocks with Silkie feathers) For those that haven't shown livestock, accepted colors are those that are allowed in shows. (Any other color combination is disqualified, and there is a process to get the colors added that takes awhile.)

We shopped around and got a good deal on a decent Styrofoam incubator with an egg turner and forced air. I had the incubator sanitized and the temperature stabilized the day we brought it home. Wednesday and Thursday were a serious exercise in patience. We even called the Post Office in hopes of avoiding another disaster like we had with the day old chicks. At around noon today, both packages arrived. I was squealing with delight. (Seriously - that must have been a sight.)

I opened the small box of Showgirl eggs first, and carefully unwrapped the egg carton. The Styrofoam egg carton was wrapped in what was either Chux or puppy training pads. They actually worked fairly well as both padding and absorptive material if needed. The seller shipped us 9 eggs, and unfortunately two were dented. We still ended up with one more than paid for, so I was pleased.

The larger package of Silkie and Showgirl eggs was packed very WELL. It took awhile to get to the egg cartons because the box was packed to the brim (actually over the brim) with packing peanuts. I had ordered 16 eggs, and I was a little perplexed when Adam pulled out three dozen-sized egg cartons. We opened the three cartons to find 34 eggs! The egg cartons had Poly-Fil stuffing on the top and bottom of each egg, and they were in great condition. Each egg was labeled with the breeding pen that it came from, so we had a good idea of what colors we would be getting. We ended up with 8 eggs from the Blue/Black/Splash pen, 3 from the Cuckoo pen, 20 from the Partridge pen, 2 from the White pen, and one from the White w/ Splash pen.

Holy cow! We ended up with almost twice what we expected, and enough eggs completely fill the 41-spot egg turner. The average hatch rate for shipped eggs is around 50%, so hopefully we'll end up with about that rate. We've warned Emma that shipped eggs can be a gamble. Sometimes none hatch, sometimes every single egg hatches. I'm going to make a journal for her to "help" me monitor the temperature and humidity, and anything she sees when we candle the eggs. We'll candle at around 7 and 14 days to remove any that have gone bad. (Boy, when they go bad they REALLY go bad...if you leave the bad eggs, they'll explode in the incubator.)

This is what Emma is hoping for:

white Showgirl - click here to view original

Killer Squash

2011-06-20T16:09:00.000-07:00

Sigh. I am back to Frustration City today. The weekend went pretty well, and I got a tan to boot. Saturday we went up to Auburn to a livestock sale to sell Light Bulb. She is was one of the remaining three Hamburg pullets that we had. We're down to seven chickens for now...at least until we can find a silkie or showgirl for Emma. She really has her heart set on a white silkie or showgirl. If not, she wants red. I keep trying to explain that 'red' is really more of a rust color, but I'm pretty sure she thinks the bird will be Kool-Aid colored.

Yesterday we went out to Camp Far West for Father's Day. All three of us girls and our husbands/kids came, our dad was there, and the in laws. (All three sets of father-in-laws!) It was so windy out there that we really didn't get a chance to go out on the boats. The waves were strong enough that Emma, Maggie, and Ryann were swimming in place. Reagan is big enough that she could actually swim against the current. I was happy to kick back in my reclining lawn chair in the shade, though. The one time I did go in the water, I managed to trip and fall on a rock. My feet are bruised and cut, and so are my shins. I'm fine, though. Poor Emma is pretty banged up. Coincidentally, I found out that the medical assistant at the neurologist office was there, in the same area, at the same time. Small world.

My appointment with the neurologist did not go the way I had hoped. He was very sensitive and supportive about the miscarriage...by the look on his face, I think that he has been there before in his own life. Because my liver enzymes spiked last time with the IVIG, he wants to hold off and try Neurontin instead. I was all set to get the treatment tomorrow. The infusion center had ordered the medicine and everything.

I've been on Neurontin before, back when it was first approved for treating fibromyalgia. I didn't get any relief then. Things have changed medically, so who knows if it will work now. I just...I just feel so deflated. This past month has been such a roller-coaster ride. The combination of everything that has happened is enough, but then I have hormones that are all out of whack on top of it. All things considered, I'm hanging in there. I'm not stuck in bed, or stuck in depression...it is something that hits me for a few minutes a day and I'm able to move on past it.

I realized that since we had been gone all weekend, I never picked the summer squash. I've realized over the years that it is better to keep on top of those things. Forget squash for a couple days, and you have an inedible baseball bat of a squash to deal with. We had two soft-ball sized eight ball squash from one bush, one normal-sized eight ball, a couple zucchini, a nice crookneck, and one freaky crookneck with an under-developed conjoined twin attached to the side.

Which reminds me...I bought a scalloped squash at the livestock sale for Adam. The little baby squash are his favorite. ✿✿✿

Father's Day in Song

2011-06-18T19:34:00.000-07:00

This first song pretty much sums up my memories with dad. Driving that old Jeep with hot floor boards out on a dusty road with my hair flying around in the air.

My dad always threatened to do this, but thankfully, he never did. Luckily he likes Adam enough that the only trips to the gun safe are to show off new toys.

Each year that I get older, I see a little more of my father in me, too.

In closing, this is the cutest darn song. My dad and I both love music. He's got his guitar, and I used to play saxophone. (I still want to pick that up again...but I digress.) I have a voice but don't like to share it in front of others. So, I'll let these two.

If I had a Million Dollars

2011-06-17T11:57:00.000-07:00

Things have pretty much been in stasis where my life has been concerned. I still haven't figured out what my doctor thinks is so important to discuss that he couldn't note it in my account. I see him Monday, and hopefully, I can resume treatment Tuesday. I'm doing okay, and I appreciate the kind words and prayers. Most of the time I'm okay, and then something brings back the tears. So, instead of talking more about this, which I'm sure you've read enough of, today is different. I'd like to play a game of "If I had a million dollars", and I invite you to play along. Bonus points if you remember the Bare Naked Ladies song by the same name. ッ

If I had a million dollars:

- I'd buy us a couple of newer cars. I like my Sonata, but let's face it...it has been some work lately.

- I'd buy a house. Nothing fancy...big enough to be comfortable and with some land for animals and growing food. Maybe with a barn and greenhouse if I could.

- I'd buy myself a beautiful horse. I have an empty spot in my heart for that part of my life, and I miss feeling like I am flying atop a cantering horse.

- I'd buy myself a bigger bed. I like to stretch out, and we don't have room for anything bigger than a Queen right now.

- I'd tour Europe and visit the places that my ancestors called home.

- I'd have someone make pants for me. It is a serious pain to find pants, and I don't have the energy to sew them anymore.

- I'd find really good cause to give some of it to. Or maybe lots to give a little to. Either way.

So what would you do with a million dollars?

I'm not always a mess.

2011-06-14T18:13:00.000-07:00

Despite the outward appearance on this blog, I promise, I am not always a mess. Lately I've been frustrated because we're spending the better part of our day sorting out employment, disability, school registration, and medical treatment issues. That's on top of the strong medications I take that make me sleepy, and the nasty ulcers I have in my mouth. Oh yeah, and grief. Good old grief...you wake up thinking it just might be gone, and then it sneak attacks you at the worst moment possible.

Thank goodness I have a loving husband that deals with the medical stuff for me. As I mentioned earlier, just dealing with the calls can stir up anxiety that is party due to the way I was MIStreated for so long, and party because of Stiff Person Syndrome itself. We still have no answer on WHY I need to go in to talk to my doctor about the IVIG treatment before restarting.

He is on-call at the hospital this week, and his assistant has been unable to reach him. She has no clue why he did this, either, and she feels horrible. I've been flaring up for over two weeks now, and I NEED treatment. The steroids haven't helped, so unless I want chemo meds, I need the IVIG like the tin man needs oil. The doctor probably wants to ask something stupid that the assistant could handle, and that makes it more frustrating. I normally love this doctor, but the past two weeks have been horrible.

First we couldn't get through because of a new staffer that can't take a message for her life, and now we're waiting for a return phone call. The doctor's assistant suggested going to the ER, get admitted to the ER, and ask for them to page the doctor. If I weren't already a mess, and if I thought it would help, I would do it. The ER can't give me the IVIG, and they can't give me pulse dose steroids without reaching my doctor that is seemingly unreachable. *Sigh*

I'm looking forward to the Gold Country Chicken Sale this weekend in Auburn. If anyone is interested, it is the 18th at Echo Valley Ranch Feed Store. People will start setting up at 9:00 AM, and it ends around 2:00 PM. We're planning on trading one of our Hamburgs for a friendly bantam that Emma can use for showmanship. She asked for "one of those fuzzballs... you know, the nice ones that like to be held." So, it sounds like we might come home with a silky. :)

Grrr.

2011-06-13T19:08:00.000-07:00

I'm beyond frustrated today, and all because I can't find anyone that has their act together. I have been in the middle of a flare up with painful ulcers in my mouth, migraines, random fevers, and spasms for over two weeks now. I tried a steroid pack with no relief. I NEED to get IVIG so that my body will calm down. It took over a week to get a call back in the first place, and now after a week of getting no answers from the infusion center, I'm told I need to go in to see my doctor. Why? Nobody will tell me.

I haven't taken any tests since then, and I have no freaking clue why I need to readdress a treatment plan that is already established. I have to go downtown tomorrow while I feel like crap and would rather stay in my bed all day. I hate going to the doctor's office. Mercy has treated me okay, but Kaiser treated me like a sack of dog poop. I have serious anxiety issues, and it is hard to handle anything medical because of it. I got pushed around and was told so many times that I was crazy, making things up, exaggerating, that I needed to just move on, etc. Nobody will tell me why I need to go in, and that is not making things better. I could have had the treatment and been feeling 10x better by now. But no. Of course not. Nothing goes as planned for me.

I've been crying on and off all day out of frustration and grief. Dealing with just one of these issues is enough, but together it renders me a blubbering ball of snot and tears. Please pray that I can get in for treatment ASAP, and that the appointment will go well tomorrow.

Forever Loved

2011-06-11T20:58:00.000-07:00

My necklace came in the mail today. It means so much to have something tangible to wear next to my heart. I took some pictures to send back to the artisan with positive feedback. It is beautiful, and I would recommend bugaboojewelry to anyone that has suffered a loss.

where we've been before

2011-06-11T19:26:00.000-07:00

Today I had the blessing of receiving the gift of my grandfather's genealogy charts, documents, and photos. My grandpa Bill spent much of his adult life tracking down his family's ancestry, as well as that of my grandmother. For years he has been looking for another family member to carry on the genealogical work. I thought about it for many years, and decided recently that it was meant to be. I have a burning desire to learn my family's history, and to share that history with my daughter.

My grandfather struggled to track history that had been destroyed during the bombings in World War II. There are pages upon pages of letters sent to and received from the National Archives, embassies, churches, the LDS ancestry centers, and more. I was given original photographs that are over a hundred years old. One noted that my great-uncle, raised during the depression, reached a spectacular height of 6'7". That was nearly an entire foot taller than the average at the time!

There are still mysteries on both my grandmother and grandfather's sides, due to deaths, adoptions, and remarriages. The information on my grandmother's father is sketchy at best, and there is no concrete evidence. I spoke with my grandfather about locating a relative to compare dna, and he was excited at the prospect. He also volunteered his own dna. The next time that the kits are on sale through 23 and me, I will have to take him up on the offer.

I can't help but cry reading his account of how my grandmother passed away in her sleep, and how he tried desperately to save her. How he'll be buried in the same plot as her, and they will be together in eternity. I found a small autobiography in my grandmother's own hand. Touching these memories brings up so many emotions, both happy and sad. After we visited grandpa, we stopped down the street at my grandmother's grave. Adam and I washed off her headstone. The white granite has been dyed a rusty color in spots from the high mineral content of our soil. We walked around and sat under a tree for awhile, all three of us holding hands.

I will be sorting through the information for some time to come, but I wanted to share a few of the photos with you. Click on the photo to view a larger image over at Flikr.

My great-grandfather's first gas station. Guess who could afford to buy gas during the Depression? Yep - the Mafia.

Broken

2011-06-10T21:53:00.000-07:00

I broke down crying in the grocery store today. Before that I started crying at a plant nursery. I fell into a crying, sniffling mess when I found baby supplies right in the middle of the garage floor. I never imagined that this could be so painful and hard to deal with. I feel so alone. Most people will say they're thinking of you, but that is about it. Sometimes, though, you really need those people to act. You need them to call you. You need them to show up to give you a hug and have a cup of tea with you. You need them to make the effort because you do not have the strength to ask for it. You need them to respect your need to just grieve and by grieving, slowly move on. Most importantly, you need them to acknowledge your pain and loss.

Don't get me wrong. I've had friends that owe me nothing and are knee deep in their own struggles offer to bring me dinner. I know I could call them in the middle of the night if I needed to. Words can't express how grateful I am to have friends like that. On the other hand, some of the people that I really need around me are conveniently absent. It is hard to have to pick and choose who we allow around us at a crappy time like this. It really hurts.

I have had a lot to deal with, starting from a very tender age. I may not have a fancy degree, or a career, but I have had to work ten times harder than most to get what I have. I am tired of having the accomplishments I do make be brushed aside or trampled on. Most have no idea what it means to struggle like that for everything that you earn. I don't know why, but my path has not been smoothly paved. It is full of potholes and hairpin turns.

So please, if you love me, don't dig another hole for me to climb over.

Dirt

2011-06-09T19:19:00.000-07:00

Our weather went from 60* with rain and hail earlier this week, to temperatures in the 80's. So much for acclimation. It doesn't feel good. It feels hot. Sweaty, nasty hot. We decided to add three feet in depth to half of the back garden beds. It was WAY too much work to do with a shovel, so we borrowed my dad's truck and rented a tiller.

I should have video tapped it, because it was pretty hilarious. (Sorry, Adam, it was.) It was kind of like a 120lb Great Dane taking its owner for a walk. Except this thing had giant tines and could probably cut through asphalt. It did the job of breaking up the grass and mixing in the manure, though. We added about 120 square feet to the garden in total. That doesn't sound like a huge amount, but it leaves us plenty of room for both flowers and veggies.

Mom asked for lots of flowers, so I planted some today. The area around the bean teepee got a purple verbena, a yellow flowered tarragon, some pineapple sage that grows bright red flowers, pink fuchsias, a purple sage, and some white allysum. Tomorrow I'll plant another watermelon, a spaghetti squash, and some other veggies. I'm tempted to clone some of the heirloom paste tomatoes that I have to plant when the determinate varieties call it quits.

Here are some pictures from today...

Adam sweating away...

Volunteer watermelon...at least I'm pretty sure it is a watermelon.

Here's some poop, there's some poop, everywhere there's poop poop POOP!

My three sisters garden got overtaken by evil Bermuda grass. That's my next task...

The summer squash is actually doing pretty well. We've had a few meals with zukes already.

One of the raised beds that was replanted with bell peppers and tomatoes. That's my stash for the bean teepee scattered about.

One very pissed off chicken. They squawked in protest while Adam tilled.

Did I mention I HATE powdery mildew? I've been having to spray weekly and it keeps coming back. Thank goodness the rain should be good and done for a few months.

This bush was a little damaged by the rain, but beautiful nonetheless.

Forgot the name for these...but they're nestled under a big rose bush with white blooms.

God bless the bees that keep me fed.

Another beautiful rose.

And another.

Happy trails to you, until we meet again. :)

Life goes on...

2011-06-07T18:30:00.000-07:00

I've been reminded this week in many ways that life goes on. Like it or not, it does. For the past week we have been struggling to get an IVIG appointment scheduled. The lovely person that kept taking our messages was not getting the whole message to the PA-C that I see between visits with my doctor. We FINALLY got through to another person that actually knew what was going on. Now all we're waiting for is a call from the infusion center to schedule treatment, and they should call tomorrow. I don't know how many times I had to say that I had a miscarriage just to get this taken care of. The words hurt, but they sting a little less with each day.

This morning I was up at sunset to get showered and ready for my yearly breast cancer screening. My mother was diagnosed with stage 2 breast cancer at the age of 32. She is a survivor in more ways than one. The women in my family have been blessed if you will with dense tissue. That dense tissue makes reading mammograms very difficult, and also raises the risk of cancer. The radiologists my doctor spoke with recommended that I alternate digital mammograms with CAD with MRI's. Because we'd like to get pregnant again, and because I breastfeed, my doctor wanted to get it out of the way so that we both felt more comfortable.

There is no way around it - mammograms and breast MRI's hurt. The MRI involves laying face down in on a table with boob and face holes. It digs in and hurts because your weight rests on the lower ribs, sternum, and face. Even with some Valium, it is difficult to lay like Superman with squished boobs for 30-45 minutes. About 3/4 of the way through the test, contrast dye is injected through an iv. Mammograms...well, they just squish and pinch and bind. Luckily those are quick. I lucked out and did not need the ultrasound that was scheduled and only needed if indicated by the MRI and mammogram.

We stopped on the way back from the tests to pick up some potting soil. Mom got a Topsy Turvy last year, and I finally got around to planting a tomato in it. The Topsy Turvy got a San Marzano tomato. We plan on canning and drying a lot of tomatoes this summer, and I've lost count of how many of each that I've planted. I think we're at 14 plants. Normally I'd have tomatoes by now, so I have no clue how the harvest will be this summer. We are planning on extended our back garden bed out a few feet, and marked that out with some spray paint when we got home. Adam is going to till it under later this week, and then we can have fun deciding what to plant.

We have harvested enough summer squash for a few meals so far, but even the squash is acting sluggish from the weather. I'm hoping that a nice spray of kelp, some fish emulsion, and some warm weather this week will help. I'll have to post some pictures when things are looking a little less pathetic. :)

EDIT: I found two tiny green tomatoes when I went out to spray the plants with kelp. Woohoo!

I'm okay until...

2011-06-05T11:46:00.000-07:00

I'm okay until...

...Emma brings me a baby blanket and tells me that it holds all of her memories of baby Avalon. That she's going to hold on to the blanket for when the baby visits from Heaven.

...I hear Emma out on the front porch explaining to her friends that our baby died, and it won't come back from Heaven until we can try again for another.

...I look at my knitting stuff and see the hats I had already made for the baby. Little, soft hats in brown, blues and greens, and a mix of reds, pinks, yellows and greens that reminds me of watermelon and summer.

...I pick up the papers from the hospital that show the ultrasound results for an empty womb.

...I curl up in bed at night and try to say my prayers without thinking about what could have been.

One Week

2011-06-04T14:39:00.000-07:00

It has been one week since my world turned upside down. One week since our tiny little angel flew up to be with God. I could never have imagined that the pain of fertility issues and miscarriage could shake me to the core. Having busted plumbing is not fun. I manage okay during the day, but at night I ache because of the emptiness inside me. It was only a few weeks, but those few weeks gave me hope.

To make matters worse, my body is not making things easier. I am hungry, but I do not feel like eating. When I do eat, the ulcers in my mouth burn and making swallowing difficult. I have to take a sip of water to get each bite down. It has been a struggle to get in nourishing food at a time when I need it the most.

To make matters worse, we have been playing telephone with Mercy in a struggle to get my IVIG treatment scheduled. As horrible as it is to say it, I am not pregnant. It does not matter what medications I take right now. It can't affect a baby that is not in my womb. I am a weepy mess, and Adam has been trying to get a hold of the nurse practitioner that I normally see, or her medical assistant. The secretary is not leaving accurate messages, and the doctor, NP, and MA have been booked and busy.

We called to tell them I was having a flare up because of a miscarriage, and needed to get in. The front office said to call my OB. We called back to say that we already saw the OB and got cleared to go back to my normal treatment until I get a regular cycle again. The front office said they needed a note from the OB. We called back to tell them that they could pull my ER records which would show that I had a miscarriage, my womb was empty, and that my hcg levels were returning to zero as expected. The OB was going to send a note, but in the meantime, they could see the records from the ER. They sent a message to my doctor, but didn't tell them which hospital. (It was one of their hospitals - I go there so that they CAN access my records.)

I eventually got a dose pack of steroids for treatment in the meantime, but we still haven't gotten through to anyone knowledgeable to get IVIG scheduled. I do not need insurance approval, which makes this craptastic merry-go-round even more frustrating. All I need is for the doctor or PA to call the infusion center, and we're scheduled within a few days. My friend's ex works in the back office at a different location, and I'm tempted to start working that connection if I have to. What else can you do?

I hadn't talked to my dad in a few weeks, either. With all of the craziness of the past few weeks, I hadn't told him that I was pregnant...or that we lost the baby. He emailed to see how I was doing, and I had to think for awhile about what to say. What a horrible bomb to drop by email. Adam asked if I wanted to call or see him in person instead...and it just hurts too much. I can't spit out the words without tearing up. God bless my dad, but he is a guy and he can get that "deer in headlights" look when I start crying.

I am supposed to meet up with my grandfather tomorrow after church to get the family's genealogical records. For years grandpa has been looking for someone to take over for him, and for years I have thought about it. With the great boom in availability of historical records online in the past ten years, I knew that I had to look into our past. I can't think of a better way to put the research skills I learned at my last job to good use. Being able to teach our daughter our family's history instead of passing on vague stories is so important to us. I just hope that I can get through tomorrow without breaking down.

I know that this has been long. I've always been long-winded when I write. I wanted to end this post by sharing a gift that Adam ordered for me. Now I can hold that memory of close to my heart. The back will be stamped with Avalon's name. He asked for a May birthstone to mark Avalon's month in my womb, and a January birthstone to mark the due date.

Forever Loved, My Angel Baby Pendant

Just Those Few Weeks

2011-06-04T01:33:00.000-07:00

"Just Those Few Weeks: A Poem About Miscarriage"
By Susan Erling Martinez

For those few weeks-
I had you to myself.
And that seems too short a time
to be changed so profoundly.

In those few weeks -
I came to know you...
and to love you.
You came to trust me with your life.
Oh, what a life I had planned for you!

Just those few weeks-
When I lost you,
I lost a lifetime of hopes,
plans, dreams and aspirations...
A slice of my future simply vanished overnight.

Just those few weeks-
It wasn't enough time to convince others
how special and important you were.
How odd, a truly unique person has recently died
and no one is mourning the passing.

Just a mere few weeks-
And no "normal" person would cry all night
over a tiny unfinished baby,
or get depressed and withdraw day after endless day.
No one would, so why am I?

You were just those few weeks my little one
you darted in and out of my life too quickly.
But it seems that's all the time you needed
to make my life so much richer
and to give me a small glimpse of eternity

No more tears in heaven...

2011-06-02T17:39:00.000-07:00

obgyn oh my

2011-06-01T11:08:00.000-07:00

Today has been easier...at least so far. We got up early to see my new ob. Her office is next to Sutter Roseville Hospital, and it looks like some kind of gynecological spa. It was hard to see all of the big bellies in the waiting room, but at least I didn't start crying.

The doctor was nice, and put me at ease. My uterine lining was pretty thin, so I didn't need a D&C. She got me set up with lab slips to make sure my hormone levels are falling back to 0 like they should. Instead of waiting for a perinatology consult when I get pregnant again, she's going to send over a referral. I need to check with the perinatologist so that I get the right formulation of IVIG when I do get pregnant again. I also got a slip for my yearly mammogram and breast mri. She told me to call back in three months if we haven't gotten pregnant, and at that point we'll talk about fertility treatment options. Hopefully it won't come to that. So, in the meantime, I am waiting for word on the hormone levels and the approval for more IVIG. We haven't gotten the bill for the first time. I'm hoping the bill isn't too painful.

in rolls the rain

2011-05-31T23:27:00.000-07:00

The weather this week seems to be fitting my emotions. It is all over the place, with a nice side of clouds, rain, and thunder. My heart aches so badly for a life that I never got to know. I want so badly for this part of it to be over. My body is sick and I am still running a low fever, and my old friend aphthous stomatitis reared its ugly head. When my body is stressed, my immune system freaks out, and I get painful ulcers in my mouth. (Sometimes in my nose and throat, too.) It is a constant reminder that something is so very wrong.

It took all day for my new doctor to get my records from the emergency room. They wanted me to get blood drawn this Friday, and wait until Monday to come in. I just couldn't wait that long. I want closure. I want so badly to know that this is over, and that my body can start to recover. I never thought that I would want one, but I let them know that I want to schedule a D &C. Hopefully it can be done tomorrow...and hopefully they can do it across the street at the hospital so that I can be sedated. They gave me the first morning appointment tomorrow.

I have been up late at night, unable to sleep. This weekend blurred into what seemed like one long, terrible day with episodes of Eureka mixed in for distraction. Eventually I would pass out from exhaustion. I've been a weepy mess. I put on my jeans that had gotten too tight, and started to bawl when they buttoned up with room to spare. I screamed with frustration when I missed the doctor's call, and their office told me to call back after checking my voice-mail so they knew who to transfer my call to. It figures that I got locked out of voice-mail and couldn't figure it out, so Adam called. I couldn't do it. Just saying the words when I first called this morning were painful enough.

I know that this won't last forever...I'll start to feel better. Eventually I won't be constantly reminded of it. For now though...I need to cry. I need to shout. I need to hold my little girl and tell her how much I love her. I need to spend the day in my messy pajamas, doing nothing but hiding in my bed and watching tv.

To those of you that have reached out to us, thank you. It means a lot to us, especially since things like this so often are brushed under the carpet. Thank you for acknowledging our loss and how much we already loved that little baby.

The Serenity Prayer

2011-05-31T13:02:00.000-07:00

The Serenity Prayer

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

--Reinhold Niebuhr

heartbroken

2011-05-30T01:25:00.000-07:00

Writing this blog has given me an outlet for what has been a very difficult few years. This Memorial Day weekend should have been a time for enjoying time with my family, and remembering the huge sacrifices our military families have made. Instead, I've spent much of the past two days in the hospital, crying my eyes out. If you are squeamish, please don't read this. This isn't "polite" conversation, and frankly, it is time that it changes. So common that hushed whispers and secrecy do not suffice.

After years of trying, Adam and I found out that we were expecting a few weeks ago. With so much that has gone wrong the past few years, this was something so right. Emma found out as well, and she was so excited that she told EVERYONE she talked to about it. She was having a sister, she said. We told her that she'd have to take what she got, because God isn't a short order cook. Four days ago, she asked me if the baby was going to die. I told her no, of course not. In retrospect, I started to feel "off" that day.

I woke up Saturday with my pants soaked with blood. The shock of it made me retch and almost pass out. My vision narrowed, my brow was sweating, and all I could do was yell for Adam. We rushed to the hospital, and I knew in my heart that it was over. I spent a few hours getting poked and prodded, only to get inconclusive results. I had to get an ultrasound, and Adam wasn't allowed to stay with me. My HCG levels were very low, and the ultrasound showed no gestational sack or fetal pole. The nurses and doctors were respectful of my emotions and were caring...but they told me that all we could do was wait and pray.

Sunday morning we told Emma that the baby most likely died, and that we would try again when we were ready. She was sad, and she held me so tight. We hadn't been to the fairgrounds to see if my pictures placed, so we decided to get cleaned up and get our minds off of it. Emma brought along her "BFF". Since the fence fell down, she has been close with the little girl behind us. Adam packed my scooter in the car, and off we went.

I was in a daze, and it seemed like every woman I saw was carrying a baby or was pregnant. Funny how things stick out like that. We found my photographs, and by surprise, I did place. I expected my photo of a mallard duck to place, and didn't expect to place in the portrait category. The result was actually the opposite - I placed third in portraits and didn't place in the animal category. Either way, that was good enough for me. I won a whopping $5.00 and a couple pretty ribbons.

We wandered around for awhile, and the cramping got worse very quickly. The girls wanted to shop, and instead of getting junk at the fair, we decided to take them to the Disney store at the mall. The pain went from bearable to something like being repeatedly punched in the gut just from scooting around the mall. After they spent their piggy bank money and we had some ice cream, we had to go home.

I crawled into bed, and the pain was horrible. I realized I was running a fever, and I knew that we had to go to the ER again. That was the last thing I wanted at that moment. I wanted my bed, I wanted sleep, and I wanted this to be over. We sat at Mercy for hours waiting for my lab work to come back. Every few minutes a young couple came in with a young child or baby that was sick, and I couldn't help but think about how this was ending for us. Their little cries made me cry. I love Emma so much, and more than anything, I want her to have a little brother or sister. I thought that after years of trying to figure out what was wrong with my muscles, and well over a year of trying to get pregnant, that this would last. This would be it. It would be real.

My HCG levels dropped from 117 to 80 instead of doubling like they should have. I didn't need the doctor to tell me. I knew what that meant. I knew that also meant that I'd have to wait for my body to let go of this pregnancy. The doctor also thinks that I have a bladder infection and possibly a pelvic infection. She gave me pain medication and antibiotics, and took some samples to culture.

Tomorrow is a holiday, and I can't call my doctor until Tuesday. To make matters worse, I haven't even seen this doctor before. I was switching doctors since my old doctor is too far away. I don't know what this doctor is like. Will she be caring and gentle like the doctors at the hospital were? Until then, I have to labor in a way that just shouldn't happen.

My heart is broken. Part of me died with that little soul that was inside of me. I used to volunteer by providing bereavement items for families at the local maternity ward. I never imagined that I would be in their place. I know that for us, we need to acknowledge this pregnancy. We need to acknowledge this little soul that was so very real to us. Since we'll never know, we decided to give this baby a name that works either way. Avalon is my great uncle's name, but it is also plays a pivotal role in the stories of the holy grail and King Arthur. So, Avalon it is. Our angel baby.

I wish I could have met this sweet baby. I know that someday, this will happen for us. We'll grow our family, by birth or by trying to adopt again. Please say a prayer for us.

-Jillian

Using Henna - Part Two

2011-05-06T19:12:00.000-07:00

If you are new to henna, it is a good idea to do a test before putting the gloppy stuff on your head. The easiest way to do this is to collect hair from your brush. The minimum amount of time is usually an hour or two, though some choose to wrap their hair in plastic and sleep with henna in their hair. I usually allow for 2-4 hours. I recommend splitting the hair from your brush into three piles if you can. Cover in henna and some plastic to keep it wet. Then rinse one section after two hours, another after three hours, and again at four hours. This should give you a good idea of the color you'll get with each passing hour. The first time you dye using henna, it is easier to have someone else applying the dye. Henna is similiar to mud in consistency, and it helps to have another set of hands. I also like to have someone check my neck and ears for any henna smudges. (Henna will stain your skin for a few days if you don't wipe it off.) Once you are used to using henna, it can easily be applied by yourself.

I recommend Henna for Hair for their great resources, as well as their store. Henna for Hair sells body art quality henna that is guaranteed to be free of any additives. They also have a wonderful mixing chart if you are looking to achieve a color other than red.

Here is one method to mixing and applying the hair dye:

This video shows how henna deepens after the dye process is finished. It starts as a more brassy orange, but after a couple days, it is a rich red. You can reapply henna to get rid of the orange in your roots, or just wait a couple days. The hair color shown in this video is very close to the color I get using henna.

Igi V

2011-05-06T15:45:00.000-07:00

While we were researching and preparing for my first round of IVIG, I found a therapeutic play kit for children with Primary Immune Deficiency. The makers of the play kit happened to be Baxter, the manufacturers of GammaGuard, which is also the infusion I received. Stiff Person is rare - only around 1 in 1 million are diagnosed. The actual occurrence might be higher, especially since most doctors have had to look it up when I've mentioned it. I have had to find resources where I can, and PID is much more common.

Anyways, I figured that the kit would be a good idea for Emma. She has been with me for blood draws and has been more curious than anything. The prospect of her seeing me tied up to an IV drip and not feeling so hot bothered me, though. I would rather her feel prepared and understand how Mommy's treatments work.

Here's what Baxter has to say about the kit:

"This one-of-a-kind resource helps families learn to cope with the medical environment through therapeutic play. The kit contains Igi V., the Therapeutic Play Doll, a storybook for children, a guide for parents, real medical equipment, and Igi V’s Medical Records Activity Journal in a convenient bag for easy travel.

Developed for Baxter by Certified Child Life Specialist Adina Bodolay and a family living with PI, this new resource can help families:

Learn strategies to cope with the medical environment
Gain a better understanding of medical procedures including IV starts, CT scans, and blood draws
Express thoughts and feelings about living with primary immunodeficiency
Educate siblings, children or grandchildren of adult PI patients, as well as children with PI"

The kit came in the mail today. It includes Igi V, the play therapy doll. Also included are books for the parents and children on IVIG therapy, and a kit with real medical supplies. (Needle, tubing, bandages, you name it.) I'll have to read up before I bring up out the doll, but I think that she'll enjoy it.

The only downside is that because they are real medical supplies, the child must be supervised at all times. Baxter could have created a blunt needle that went into an open "vein". Oh well - the kit was free and it is much appreciated. It also bothers me a little that they have plenty of money to send free books, infusion tracking packs, and play therapy kits...all because the cost of the medicine is outrageous. One infusion costs around $12,000, depending on your weight, diagnosis, and location.

When we bust Igi V out to play with, I'll make sure to get some pictures. :)

Using Henna - Part 1

2011-05-05T17:27:00.000-07:00

I have tried all sorts of hair coloring, dyes, etc. My hair is mostly straight, but some is wavy and a small portion makes tight, kinky curls that are impossible to comb down or flat iron. Before finding henna, I noticed that Joico's Kpak helped a lot with keeping my hair manageable. I decided to try henna on a whim, and I LOVE the stuff. It is a natural dye, and there is some reluctance when most look at natural dyes.

Henna is a plant (Lawsonia inermis) that is commonly grown in India, Africa, and Arabic countries. While stores carry brown, black, and even blonde "henna", real henna only dyes orange or red, depending on your hair color. Colors other than red are made from other plants dyes like cassia and indigo. Henna adds protein and shine to hair, and if used weekly, it can help release curls.

If you choose one of these other colors, make sure to get a body-quality dye. Cheap dyes may contain other ingredients that could cause reactions. I get my henna either from a health food store, or in bulk from an herb shop in Rancho Cordova called Starwest Botanicals. In the mix below, I am using cassia and henna. This would provide a light red dye if it were your first time.

- Measure out your henna if you did not buy a kit. Four ounces of powder will completely coat my medium length, thick hair. I prefer to mix the henna in a disposable plastic container, or a plastic bag. (You can use whatever you like, as long as it is not metal.) Cool trick - if you use a ziplock-style bag, wrap it in a white paper towel. When the towel starts to turn orange, your dye is ready to go. Otherwise, you will notice a brown layer on top of the henna mixture.

- Wet henna has an earthy, plant-like scent. My husband likes it, but my daughter thinks it smells like dog. If you don't like the smell, feel free to add some cinnamon, cloves, lavender essential oil, etc.

- To aid in the dye release, I add apple cider vinegar and the juice of a lemon. You do not need to add an acid to the mix, but it does speed up the prep time. If you are sensitive, you can use orange juice instead of lemon.

- Mix in the apple cider vinegar and lemon. The mix will probably be pretty dry at this point. You will want to add warm to hot water. Make sure to not boil the water - that is too hot. Keep adding and mixing until it takes on a yogurt-like consistency.

- Cover your container, and wait for the dye to release. I usually let it sit overnight, but it may need to sit longer if it is cold in your house. Some brands release dye in just a couple hours, some take two days. I recommend allowing for a day or two the first time. If the dye is ready and you'd like to dye at another time, you can store it in the fridge for a few days, or the freezer for six months or so.

Part two - coming soon!

*I realized after the fact that I used a metal spreading knife to mix the henna. Whoops! It will turn out okay, but avoid metal if you can. If too much metal gets in the mix, it can turn you hair green.

Summer in 0-60 Seconds

2011-05-04T14:48:00.000-07:00

It seems that California really only provides us with two "real" seasons - summer and winter. Spring and autumn are nothing but a passing glimpse of comfortable temperatures. We had an unusual winter season this year that lasted up until this past week. Before going to the infusion center, I had to bundle myself up so that my veins would not play peekaboo at the worst possible time. Now? My plants are wilting and I am hiding inside with the air conditioning running.

Don't get me wrong - I appreciate summer for the bountiful harvest and beautiful flowers from my garden. I just do not like the heat. If I had my choice, I would live somewhere a little bit cooler. My favorite spot is off the Coast, across the Bay and south of San Francisco. I doubt my roses and tomatoes would enjoy the move, though. My budget most definitely would not survive the move.

This year's garden includes several different varieties of tomatoes, lemon and canning cucumbers, a few types of summer squash, corn, beans, sugar pie pumpkins, potatoes, herbs, walking onions, and a mystery cucurbit that popped up under a couple of rose bushes. If I can find the space, I'll plant some spoon gourd seeds that my mother in law brought back from Arizona. At least I think it was Arizona...she travels a lot as a very special agent for the Feds. :)

With so many roses, I suddenly have a HUGE aphid situation. Normally I use companion plants and organic immune boosters like kelp to help the problem. This...this is a full-blown situation, though. I found aphids on my squash plants, and I am pretty sure that is a first. The freakish weather also brought powdery mildew to the more susceptible plants. I had to create a spraying schedule, and hopefully the foliar feeding and Organicide treatment will work.

If you happen to find a bag of squash and tomatoes on your doorstep in a few weeks, it wasn't me. ;)

What happened to Plan A?

2011-05-02T14:45:00.000-07:00

I sometimes wonder what life would have been like if I hadn't gotten sick. What would that have been like? My dream was to finish school, majoring in art or possibly horticulture. I love photography, gardening, and landscape design. I probably would have a successful career and a couple kids by now. I'd have a modest house with a nice, big yard and old shade trees. I'd probably still play soccer when I had time.

Life doesn't always go according to plan. After hearing a moving sermon during church yesterday, I knew I had my subject for today. The church I had gone to since birth dissolved after the pastor retired, and we wandered around looking for something that felt like home. A few years later, I found a great friend in junior high, and visited her church. I loved the upbeat environment and the fun lessons we got in the teen group. I had a couple of great youth pastors that helped me through a tough time in life. My mom's second marriage didn't work out, I was at a new school, and I started having horrible headaches. I had somewhere to turn when I started getting ulcers in my mouth, and I was scared when I was being tested for everything from HIV to yeast overgrowth. The doctor's had seen nothing like it, and that alone was scary. In fact, I don't think that I told many what was going on in my life, but they knew I was going through a lot. Eventually, I was baptised with my best friend by the same youth pastors. We lost touch when the church moved to a much larger location, and I became lost in the busy life of a teen.

Pastor Brian Benton, myself, Larissa Cook, and Pastor Steve Conrad

I decided one day last year to post old photos that I had from that time. The internet is an amazing thing. Within a few hours I was reconnected with the group from church. The youth pastor had started a church of his own, Crosspointe Community Church. I didn't have a chance to attend services at the time. My spasms were uncontrolled, and I was having a hard time even getting out of the house. This Easter, I got another invitation to attend the service, and I knew I had to go. It felt right. Even my husband, not raised in church, knew we had to come back, and so it is. The sermon this past Sunday? Plan B: What Do You Do When God Doesn't Show Up the Way You Thought He Would?

This morning, I stopped to read the blog of a dear friend. Her daughter was critically injured almost two years ago, and her blog allows her to let her emotions out and keeps us all updated. On Mondays, she encourages her blog readers to join in. Her topic today? "I am wondering the difference between what you thought your life would be, and what it is? How do you handle the difference between the two?"

Thank you for the image, Jen!

I am at a crossroads in my life. There are so many uncertainties that cloud my vision at times. How will this progress? Will treatment help stop or reverse some of the progression? Will I live a long, happy life, or will I succumb to the disease? Will we be able to have more children? Will we be able to adopt if that is how we need to grow our family? I have had to accept that I can't know the answers. This wasn't my plan...but somehow, blessings have come from this chaos.

-I am learning to bite my tongue when I'm frustrated. I love my husband, and he doesn't deserve my grumpy attitude when I'm having a rough day. He loves me unconditionally, and despite my shortcomings.

-I get the chance to spend most days at home with my little girl. She won't be little for long, and I want to soak it up.

-Even though we no longer own our own home, we're in a comfortable place at my mom's. It is wonderful that Emma gets to spend so much time with her, and they are best buddies. Mom helps so much with Emma. In turn, we do what we can to keep the house maintained and the yard welcoming and relaxing.

-Our fence blew down, and while that was crummy, another blessing came. Emma found a new friend, and now there is a kid-sized doorway in the fence for them to go back and forth.

-Even though I probably won't be able to return to work in any sort of normal fashion, I have time to get some college course out of the way.

-I haven't been able to travel far in a few years, so we've been able to explore the beauty of Northern California. There is so much to see near home.

-I've found new friends, and it feels like we've known them forever.

-I have been able to put aside differences and grow a closer relationship with my Dad. He has been so helpful, especially since this diagnosis was confirmed.

-Even though it was spent in a chemo center, I spent more time alone with Adam than I have since Emma was born. It wasn't ideal, but that time was precious.

-When I can, I break out my camera. Our yard is filled with flowers of all sorts, and they make beautiful subjects. Not only am I shooting my first wedding this month, but I have also entered a couple photos into the Sacramento County Fair. (Wish me luck!)

-By the grace of God, I have found a church that feels so right when I needed it the most.

-I have had a chance to research our lineage, and in short, it is amazing. My great-grandparents were the kings and queens of England, Spain, France, and during the crusades, my great-grandfather was the king of Israel. I need to do the math, but I also realized that Adam and I are cousins through the Spencer Family line. (Don't worry - it is out 15-20 generations or so.)

-Through this suffering, I have become closer to Christ. I feel empathy and understanding for others that I didn't before. I consider the challenges a checker faces in their own life before I become frustrated at their slow check-out times. Do they have a brain injury? A learning disability? Are they dealing with health issues, or is someone near them suffering?

While Plan B wasn't what we planned on, it very often brings blessings in disguise. I just had to open my eyes to them.

She always knows how to make me smile. :)

Home Again

2011-04-30T15:34:00.000-07:00

We're home. Finally. Easton Corbin and Josh Turner put on a great show. The Bob Hope Theater in Stockton is something else. Once a Fox theater, the inside is grandiose in an old European meets Roman sort of way. The sound of the music was so warm and rich - even the singers commented on it. I have seen Josh Turner at Arco Arena and at the Konocti, and the sound in Stockton was a music lover's dream. The stairs on the other hand...they were a huge challenge. My legs gave out half way up, and I had to swing my legs up like I was walking on peg legs. Fortunately, my legs decided to relax during the concert and I made it down the stairs without sliding down on my butt.

When we booked our hotel, we specifically asked for a nice, quiet room. We'd be up late and wanted to sleep in. The failed to tell us about the 7 am benefit for St. Joseph's cancer center. If you know me, you know that I am all for supporting cancer patients. After driving around Stockton trying to find a tooth brush at 11:30 at night, and then getting wound down, I wanted to sleep in. My body needs to rest. Between my loving husband stealing the blanket all night and the lovely (and LOUD) benefit breakfast right under our window this morning, sleep didn't really happen.

I'm in bed now, and my bed feels like a cloud at the moment. My poor body is so tired and sore. I want to get out and get things done, but I promised to rest, and I will. Being a little woozy pretty much guarantees that I'm not on my feet for more than a few minutes. I am praying so hard that my liver will stop taking a vacation. I have to schedule a follow-up in a few weeks for more testing, and to discuss our options.

Bad liver! Bad!

2011-04-29T17:43:00.000-07:00

We are currently in a hotel room in Stockton, calling in some room service. Somehow, we managed to book the same hotel housing the Peace Officers Memorial Ride. The place is crawling with cops, and they brought a LOT of booze. Drunk cops should be interesting. I thought the wind was bad at home. I'm actually able to stand on tippy toes and lean into the wind. When I'm stiff, which is pretty much all of the time now, I feel like I am walking in molasses. This wind makes it feel like I'm stuck in curing cement.

If we hadn't bought tickets for Josh Turner months ago, there is no way I'd consider a road trip after IVIG. I feel like I took a header off of a horse. (I've done that...a few times.) Fortunately, my car is back on the road, and we didn't have to borrow a car for the trip. I got a little bit of side-eye when I admitted to the doctor's assistant that we were going to a concert tonight. I promised to stay in bed for the rest of the weekend.

The second round of blood tests to check my liver function did not yield good news. My neurologist wants me back in after a few weeks to check my enzyme levels again. Further IVIG treatment isn't completely out of the picture, and I hope that it stays that way. I am looking into sub-q delivery, which might be easier on my liver and kidneys. With sub-q delivery, the dose is split into four treatments given once a week instead of over 2 days. Because I'm a bit of a freak and neurology hasn't dealt with sub-q IVIG, I'd be sent to Immunology to get that started. Most IVIG patients have immunodeficiencies. The neurology department only has a few other patients on IVIG, and go figure, they aren't having any side effects.

We'll be praying and hoping that my liver can handle the job and get back to normally quickly. I have seen some improvement, and long term, this is a LOT better for my system than benzos and muscle relaxers.

Day Three - Scratch That

2011-04-28T18:06:00.000-07:00

When I showed up to the infusion center yesterday with a raging migraine, the first concern was that I might have developed aseptic meningitis from the infusion. The doctor gave the okay for Toradol to treat the migraine, and some fluids to help keep me hydrated. Just in case, they wanted blood drawn. I got through the infusion okay, and actually fell asleep right before it was time to go. (Figures, right?) I didn't even notice the chemo patients constantly shuffling in and out. They're so quiet...on a mission, if you will. The nurses know them by name, and they are in and out in much less time than me.

On the way home, my stomach started to hurt. I figured that it was the jostling from riding on crummy roads in a diesel-powered dualie that did it. Not that lucky. I was smacked in the face with one of the more common side effects. Last night I finally got into bed around 2 am, after being sick for hours. It was rough.

When I showed up to get my infusion this morning, then nurse was concerned. She told me to not worry, but that my blood work came back with elevated liver enzymes. Unfortunately, the neurology department was in a meeting for another half hour. I decided to hang out in the recliner since I was still feeling queasy. When the nurse finally got a hold of a doctor, they said to send me home. Out came the iv's, and out we went. Before we left we went upstairs to schedule a follow-up with my doctor's assistant.

I really hope that I can continue getting IVIG. We may need to switch formulations or go to sub-q delivery. Since starting the treatment, I haven't taken nearly as much Ativan or Flexeril. That is saying something, because I've been so stiff for years now. We're praying that this was just a fluke because it was the first time. I really, really, really don't want to do long-term steroid treatment, and that is the only other option.

We don't have any pictures from today, so here's a picture of me giving the side-eye yesterday.

Day One - Done!

2011-04-26T20:14:00.000-07:00

Day one of three is done with. Finis. Out of the ballpark. I showed up early this morning to the infusion center. Really, the infusion center is a small unit tucked in the back of the oncology department. They told me to choose where I wanted to sit, so I chose the only recliner with its own little divider. There was more room for us to spread out and relax. Before the infusion started, my pulse and blood pressure were ridiculous. It was 100% nerves. I started to feel nauseated before the infusion even started. The nurse gave me a hefty dose of Zofran, and we were off running. (At a snail's pace.)

I am receiving 45 grams of Gammaguard each day for three days. To reduce any side effects, the dose is slowly titrated up every half hour, and then every fifteen minutes. The infusion took about 3 hours and twenty minutes. Because my veins are so crummy and I don't have a port yet, my iv was flushed and locked with saline. I avoid more sticks tomorrow, but I can't get my hand wet. I think I'm going to take a bath with help tonight, and then go to a salon in the morning to get my hair washed. After the raging headache I got through today, I deserve a little pampering, if only for a few minutes. Speaking of the headache...imagine have the flu AND a horrible hang over. It was on par with headaches that have sent me to the ER before. It took time, excedrin, ice packs, and lots of fluids... but I'm not feeling it as much anymore.

Luckily I wasn't capable of vomitting after that huge dose of Zofran, because traversing downtown in a Dodge Ram duelie is precarious enough without any help. We called and asked for something to help prevent the headache tomorrow. Adam did manage to snap a picture of me while I was about to fall asleep...enjoy. :)

This week was...rough.

2011-04-25T22:24:00.000-07:00

This past week was...rough. One of our friends in the ICU with diabetes complications, and it has been touch and go. He was just transferred to San Francisco. My grandmother took her foster son, Ranny, down to Stanford for open heart surgery. He is back in ICU with a collapsed lung. It breaks my heart to not be able to be there for them other than in prayer. Those troubles make mine pale in comparison.

After a full week and a half of going back and forth between infusion centers, my doctor's office, and our insurance company, I finally got scheduled for treatment. For three days, I will have to travel downtown to visit the oncology department for an IVIG infusion. My awesome husband took the time off to sit with me, and the whole village came out to help take care of Emma while we're at the infusion center.

Adam's car has been out of commission because of a bent rim. We haven't been able to find anyone that will sell us one rim, and we don't really have the money to buy extra rims that we do not need. When he attempted to move his car this past week, we discovered that a rat had eat several cables under the hood. Bonus prize, right?

I found my four year old bawling in her room earlier. She has a friend who is a little older, and that friend lost her grandmother recently. The friend asked Emma what she will do when Adam, my mom, and I die. Double bonus prize. Understandably, Emma was distraught. I can tell that me being sick affects her, and this scared her badly. I held her and rocked her, whispering in her ear how much I love her. How I'll never leave her. How I'd hold her all day long if I could. I explained again that Mommy is getting good treatments that should hopefully help me have the energy to do more "Mom" things. How I'd be home she she woke up in the morning, and how I'd be home for dinner and to cuddle while she fell asleep.

Tonight Adam ran to get dinner, and discovered that the power steering pump in my car wasn't working correctly. After opening up the hood, he found a leak in the tubing for the pump. Triple bonus prize. My dad lent us his truck so that we can get to the appointment without having to rent a car. Chugging downtown in a huge Dodge Ram should be fun. God bless him for helping out, though. He'll be babysitting in the afternoons as well.

While Adam and my mom drove over to pick up the truck, I decided to take a long, hot shower. I've been an emotional wreck, and I needed it. I didn't factor in that the washing machine and dishwasher were going, and it was a fight to keep the water warm. I scrubbed, I shaved, I moisturized. I felt a little like Geralyn Lewis when she decided to wear lipstick to her mastectomy. (My survived breast cancer treatment at 32, while I was just babe.) At least if I have to endure physically and mentally, I'll look okay doing it. Trade that lipstick for Burt's Bee's lip tint, and I'm there.

I admit it. I am scared. I am nervous. I am excited. I am trying to hold on to the fact that IVIG can be a huge help for most, but it may not help. My last resort would be long-term steroid treatment, and steroids make me feel horrible. I pray to God that this helps. I pray that I do not suffer side effects. If you're the praying type, please pray with me. I can't thank all of my friends and family that have stood up to support me enough. Words do not express it.

Finally!

2011-04-22T14:36:00.000-07:00

Woohoo! After a week and a half of crazy, round-and-round phone calls, I am finally scheduled for IVIG treatment. We'll be going to the new Mercy building right at Q and business 80. I like San Juan because it is close, but the Q street location is new and posh. I won't be premedicated, so I won't be knocked out on benadryl. (Most infusion centers premedicate.) I am praying that I have no nasty side effects like migraines, vomiting, diarrhea, or the dreaded immune reaction. Headaches and fatigue are pretty common, and so is a flu-like feeling for a few days. The others aren't that common.

I'll be able to sit in a squishy recliner while they pump me full of antibodies for a few hours each day. They said that if I'd like to get up and walk around, I'm welcome to. After this round, I am going to get a port if the treatment goes well. I'd prefer an under-the-skin chest port, but it is up to the doctors.

I have to send out thanks to God and my wonderful friends and family members that helped me get to this point. I have been searching for answers for my entire teen and adult life. I prayed for help in finding a doctor and a correct diagnosis, and I found them. I can't help but see that as a wonderful blessing.

Below is the infusion center at Woodland...Midtown should be much the same.

Beyond tears...

2011-04-21T22:24:00.000-07:00

I am so frustrated. This week has been so confusing and irritating. Emotionally, I am beyond spent. We are still going back and forth with the doctor's office, the infusion center, and now for some reason, the oncology department. I've been told at least five times that my time is blocked out at the infusion center, only for them to call an hour later with some new crisis. They need to confirm something, then there is an issue with the dosage, then an issue with the scheduling (can they do it every other day?), then a problem with oncology. (Still don't know what their issue was.) Then they didn't know if they'd have enough medication, and it would have to be special ordered. Could they give me a time estimate on how long it would be to order? Of course not.

They'll talk to Adam, say they'll call back, and then call me when I have no clue what the previous conversation was. Adam has asked that all calls go through him because at this point, I've had it. I can talk to my doctor's office without issue, but the others are driving me to tears. It doesn't matter who it is - they just talk circles around circles, never making sense. At this point, I'd rather be admitted to the hospital for a few days to get the treatment. If they don't figure this out soon, I'll be in the hospital from the stress.

T minus 3.5 days...Part Two

2011-04-21T09:55:00.000-07:00

Why is scheduling such a big deal? The infusion center at San Juan booked our appointment for Monday morning. Later on, the word was "oops...we can't do that." The center had openings Monday, but not Tuesday. They couldn't schedule me next week unless I wanted Wednesday - Friday. We told them we had a commitment Friday night that we can't get out of, and more importantly, we have to find a baby sitter for the days I am at the infusion center. I got the feeling that the scheduling lady could care less. (Also the same lady that almost made me blurt out a long string of expletives by getting me pissed before I had any coffee yesterday.)

After a couple hours of trying to figure it out, I got a call from my doctor's office. I asked to be sent to the downtown infusion center instead. I didn't want to risk the chance that the woman we dealt with yesterday would be treating me. If you can't pull your $%# out of a hat, you don't need to be poking me with needles. The downtown location blocked out time for us Monday-Wednesday, leaving me some time to recover before the concert. We are waiting for the referral to be send over in order to schedule the exact time, and that should be taken care of today.

If it weren't Josh Turner, I might have forgotten it. But it is Josh Turner, and I REALLY need to get away for a little bit. Even if it is just a day or two. We haven't just gotten away for a night since we saw Willie Nelson at Ironstone Winery. We were on a very tight budget for that trip, and this time we can afford a nice hotel and hopefully a nice meal out.

If you are the praying type, please pray that the IVIG treatments help, and that I do not suffer any side effects. This feels a little like scheduling a c-section and knowing the exact moment your child will be born. I am relieved, happy, excited, scared, and nervous all at once.

T minus 3.5 days!

2011-04-20T13:18:00.000-07:00

We finally have an appointment for my first IVIG infusion. It took a lot of work on the part of my doctor's office to get this going. We have a PPO, and for whatever reason, they have decided to not require authorization on many treatments. The list of what does not need approval is strange and doesn't make much sense, but that's beside the point. Because I did not need authorization, I did not have an authorization or referral code. That just wouldn't do for the infusion center. They wanted hard proof that they would get paid.

Ugh. This was like deja vu of the incident a year ago when I was trying to get breast cancer screening approved. Round and round we go. The insurance company mailed a letter stating that they will pay the charges, but we have to wait for the infusion center to get the letter. My doctor's office sorted that part out, and said it should be a few days. Okay. I can wait. I hate waiting, but I can wait.

For some unknown reason, I got a call today from a lady at the infusion center. She told me the exact opposite of what the doctor's office told me. "You have to pay 90%, your insurance only pays 10%." WHAT? I tried explaining that the doctor's office already sorted it out, and that we were just waiting a letter that was already in the mail. She kept insisting I call to get a letter, and was going round and round. I finally told her that I'd call back in a couple hours. I couldn't take anymore and still remain civil.

Of course, the insurance company reassured us that our maximum would be $1000 out of pocket, and we should be reaching our yearly maximum soon anyways. Now we're trying to work out the scheduling, which is proving to be a pain in the rump. It shouldn't be, but it is. Murphy's law, I suppose. I've heard that once you're in the system, getting monthly treatments is MUCH easier. I sure hope so.

I'm crossing my fingers and praying that I don't have treatment late next week. Aside from wanting to start as soon as possible, we have a Josh Turner concert next Friday that I would really hate to miss. We already booked a hotel room on the water for a little R&R, and I really don't want to spend that time at home or in the hotel room feeling sick. Sigh

Good omen...or good veins?

2011-04-13T18:57:00.000-07:00

Today we trekked downtown again for a neurology check-up. I often see the doctor's assistant, and sometimes rotate between the two. Since they work so closely together, I get the same quality of care, but with a LOT less wait time for an appointment. When you're seeing the head of neurology, that might mean a few weeks compared to the next day.

Anyways, I think that we got a lot accomplished today. We talked about a treatment plan, and decided on trying IVIG, and then steroids if I absolutely must. She said that she should get word back from my insurance company pretty quickly because we have done all of the groundwork to prove the diagnosis. I am crossing my fingers that they will pay most of the cost. Each infusion is around $12,000, and I may need more than one a month. Usually my insurance caps my out-of-pocket expense at $100 for those things, so I am praying and hoping.

Because this is so rare, she needs to figure out what the loading dose is, how many days that will take, how often I need it, etc. She is also getting approval for a port. I'm not sure which type I'll be getting. The assistant said that she'll get with the infusion center and their PICC nurse to see which might work the best for me and the treatment. It may be a PICC line, but I'm hoping for a mediport that is under the skin. Ports under the skin are a little more work to get in, and it will be sore while it heals, but the benefits make up for that. PICC lines can't get wet, and they kind of dangle there. So...we'll see. Either way, a port will make it easier on me and the nurse administering the infusion.

There is a risk of a serious reaction with IVIG if I am IgA deficient, so after the appointment it was off to the lab. Normally my veins play hide and seek, and I usually end up with 3-4 sticks in my hands. The blood flow isn't great, and the phlebotomists struggle to get enough blood for the lab work. This time, she got it on the first try in my elbow! That has to be some sort of good omen. With so many things going wonky lately, I can appreciate something so little. I hope that good luck keeps up. :)

Fences, Veggies, and Jewelry

2011-04-04T13:41:00.000-07:00

This weekend was a blur of gardening and fence building. I sat in the garden beds and pulled weeds for hours, which in retrospect was a BAD idea. I worked for about four hours, took a nap, and woke up so sick to my stomach. Adam and the neighbors managed to get the old fence down, and my dad helped Adam pick up lumber and cement. Most of the holes are dug, and the poles just need to be leveled and cemented. Next Saturday we'll get the pickets up and have a shiny, new fence. I think I might miss the wide open space. It makes our yard look HUGE. ;)

We also got some of our veggies in the ground. I bought 11 tomatoes, mostly romas, some heirlooms, and a couple that will be good for slicing. We also got a few kinds of squash, some cucumbers, and three bell peppers. I need to find some lemon cucumbers, though. I LOVE lemon cucumber wedges with a little sea salt sprinkled on top. Lemon cucumbers are not available in stores, so growing them is the only way to get any. We also got a big flat of marigolds and lady bugs for pest prevention. Right now, the debris from the fence is stacked in front of the shed. It is serving the purpose of killing the grass for me the easy way. Once we get that cleared, I'll be planting a three sisters garden there.

This weekend also brought the arrival of my medical alert bracelets. Considering the oddball diagnosis and the risks of suddenly stopping medication, I decided that it would be best to wear a medical id. I joined Medic Alert because they allow you to input your pertinent medical information online, and you can change it at any time. This includes my conditions, medications, my doctor's contact info, and emergency contacts. In the off chance that I'm a goner, it also states that I'm an organ donor. I ordered two bracelets - one with teal writing, and one with white writing. They're inscribed "Stiff-Man Syndrome, Fibromyalgia, Allergic - Sulfa, Tetanus Vaccine." Hopefully I'll never need it, but I feel better having them.

Who owns a Rascal? I do.

2011-03-31T19:47:00.000-07:00

Last year when things were starting to go down hill and we didn't have a solid diagnosis, we decided to find a mobility scooter for me. For the past few years I have rented them if we go to places like Disneyland or the state fair, and at $50-$100 per rental, it just didn't make financial sense. We kept an eye out on craigslist, and found a used scooter in cherry apple red.

I loved the thing. However, I noticed that using it, I get even more glares than I do with the scooters in big-box stores. People act like I stole the scooter from my grandma and decided to be lazy. Seriously - I have never gotten so many stink-eyes.

I'd like to fix the scooter up a little since I will probably be using it more. The front control panel sticker is worn, and I'd really like to make one out of wood veneer. Breaking out my wood-burning tool would be fun. It needs some new trim and a little crack fixed, but I'm sure Dad could handle that if I asked.

Back to the glares. I decided to show a little of my snarky nature, and add a bumper sticker. It took me awhile to come up with what I really wanted to say. Today I did it, and it has been added to my Zazzle store. Check it out:

I didn't "look" disabled? by classicsredone
See other Disabled Bumper Stickers

Here's what my scooter looks like...except mine came pre-loved. It is pretty cushy. I just need to get a basket and a drink holder, and maybe one of those shade umbrellas that clip onto the back. Then I'll be rollin' in style.

Biting at the reins...

2011-03-31T17:37:00.000-07:00

The past few days have been beautiful. The temperature has been around 75-80, with nary a cloud in sight. Naturally, I am in full gardening mode. Except...my body does not want to behave. Last night I got in about five minutes of weeding. Today, bending over to get a wash cloth locked me up. I am craving a leisurely shopping trip to Capital Nursery for seedlings and amendments. I'm also craving the delicious produce that comes later. The lemon cucumbers, the juicy tomatoes, the sweet bell peppers. Right now, I'm propped up in bed with an ice pack and even a cocktail of Ativan, Flexeril, and Tramadol isn't making a dent.

It kills me to see weeds overtaking the flower beds I worked so hard on, but it will have to wait. If nothing else, God is presenting me with a lesson in how to be patient. I just need to learn how to be a good student.

a funny thing about life...

2011-03-30T13:28:00.000-07:00

They say that God works in mysterious ways. Sometimes we wonder if He hears us, if our prayers might be answered. They also say that when you dealing with the biggest challenge you will face in your life, you will either turn towards God or turn from him. I didn't have to turn...I never left. It is funny, though, how in retrospect His plan seems so perfect. When you feel so alone during that trial, the people that stand up and show their love mean so much. Call it fate, call it God's plan...call it what you will. Those people are angels here on earth. I read a story on another site about a whaling captain that I would like to share.

"A good many years ago, I was sailing in the desolate seas off Cape Horn, hunting whales. One day we were beating directly south in the face of a hard wind. We had been tacking this way and that all the morning, and were making very little headway. About 11 o'clock, as I stood at the wheel, the idea suddenly came into my mind, 'Why batter the ship against these waves? There are probably as many whales to the north as to the south. Suppose we run with the wind instead of against it? In response to that sudden idea I changed the course of the ship, and began to sail north instead of south."

"One hour later, at noon, the look-out at the masthead shouted 'Boats ahead!' Presently we overtook four lifeboats, in which were fourteen sailors, the only survivors of the crew of a ship which had burned to the water's edge ten days before. Those men had been adrift in their boats ever since, praying God frantically for rescue; and we arrived just in time to save them. They could not have survived another day." Then the old whaler added, "I don't know whether you believe in religion or not, but I happen to be a Christian. I have begun every day of my life with prayer that God would use me to help someone else, and I am convinced that God, that day, put the idea into my mind to change the course of my ship. That idea was the means of saving fourteen lives."

To those angels in my life, thank you. I am so glad that we found each other. Words can not express how blessed I feel to have you in my life.

Spring is here!

2011-03-30T11:30:00.000-07:00

Spring is officially here! We haven't had rain in days. (I'm knocking on wood right now!) The backyard FINALLY has a chance to dry up, and hopefully we'll get our fence fixed soon. Last week it came crashing down during a particularly violent storm. Said storm had me in my neon-pink Crocs rain boots, holding a flashlight and trying to stay dry while I figured out what went crash in the night.

The next day, Adam and I pulled down what we could and threw the pickets into piles by the shed. Last night the neighbor behind came over to let us know that he got our letter about why the fence was missing. :) He is more than willing to pay his half, so that is a huge weight off our shoulders. Money only goes so far when you are living off one income. I was also so pleased to know that they are nice. We hadn't talked to them yet, and the people living in the house before were...weird.

We also got a ditch started for drainage in the backyard. For some reason the back third of the house drains on the side, and that leaves the back a veritable swamp. If we got summer rain, I'd get rain barrels rather than drain it away. Too bad we get most of our rain from December - mid February. That is, except this year. Hopefully after the fence is built, we can finish the drain project and have the side of the house drain to the front lawn. I'd also like to add the downspout that drains into the rose bed to the drainage line. That would be one-less gardening worry in the early winter months, when mildew can be an issue.

Our potatoes, peas, and lettuce are doing wonderfully, and in the next couple weeks, we'll have roses blooming again. I started a compost pile with the few weeds I've been able to pull as well as the chicken bedding. They'll be going outside soon, so hopefully we won't have nearly as much bedding to worry about soon. For some reason it creeps mom out to put the bedding straight into the flower beds, so composting it is a must. My husband is planning on building a nice compost bin out of left over pickets once the other projects are complete.

I need to make a trip to the nursery now that the rain has let up. By now I would normally have a full garden started, but Mother Nature had her way. We love the selection and staff that knows their stuff over at Capital Nursery. I'll be replanting the bean tee-pee, adding tomatoes and sweet peppers, corn, summer squash, and pumpkins. I might add some melons if we have the room, but we'll see. Winter ruined my basil plant, and that will need to be replaced, as well. In the front rose beds where diseased plants were torn out, I'll plant sunflowers behind the remaining rose bushes. The bed to the side of that already has blooming iris and poppy plants.

I do not like the heat during the summer here, but I love the color and fresh vegetables. Here comes the sun!

Diagosis? What diagnosis?

2011-03-29T18:16:00.000-07:00

I was asked to explain what diagnosis I was given, so here is a little information from the National Institute of Neurological Disorders and Stroke. I do not have anti-GAD antibodies, so the prognosis is a little better, but treatment options are fewer.

What is Stiff-Person Syndrome?

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

Is there any treatment?

People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine. A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS.

What is the prognosis?

Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder. Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe. With appropriate treatment, the symptoms are usually well controlled.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to SPS in its laboratories at the National Institutes of Health (NIH), and also supports additional research through grants to major medical institutions across the country. A study using the drug rituximab proved ineffective in treating individuals with the disorder. Current research is focused on understanding the cause of the disease and the role of the anti-GAD antibodies.

Step One - Finding a Foundation

2011-03-28T13:42:00.000-07:00

If you read this blog, you know that I've been having good days and not so good days. Some days I'm weeping like a broken water pipe, others I'm happy to be living life. Dealing with a devastating diagnosis is like stepping into a whirlwind. Some days I just need to be held, and my husband is there for me.

Don't get me wrong - I don't feel like I'm stuck in a whirlwind of depression. I'm stuck with trying to figure out what this diagnosis means, and what my path in life will be. Should I hold off on classes for now, until things are figured out? Should I drop the goal of an AA and just take classes that are interesting to me? Will we ever have enough income to get a place of our own? (Don't get me wrong - I really, really appreciate Mom letting us stay here.) Will we be able to have another child? Will I have the energy for another baby?

I am the type of person that likes to have a plan. I like to know where I'm heading, where I've been. In away, this diagnosis is gratifying. It is evidence that I wasn't a lazy lump all of these years. I wasn't giving up on school and a fancy career. I was SICK, and I don't know if others have really realized that yet. I have accomplished more than many have with the cards I have been dealt. Accepting that has also been gratifying.

I've joined a couple online support groups, since none exist locally. I bought a book on how to deal with a devastating diagnosis. I'm making an effort to get up and do a little exercise, only if it is to do a few squats or push-ups against the counter. Anything is better than nothing. When I need a little cheering up and I'm here alone, I feed the pullets a little treat. Watching their antics would make anyone smile.

Here's to another day - hopefully a good one. :)

Interviews with my Daughter

2011-03-24T13:09:00.000-07:00

Today we're going to take a little detour, and interview my four-year old, Emma. :)

Me: What do you want to be when you grow up?

Emma: A teacher.

Me: What do you need to be a teacher?

Emma: A teacher's stick, a table, a chalkboard, and some chalk.

Me: What would be the best part about being a teacher?

Emma: Teaching kids. Teaching them how to learn. That is the bestest part.

Me: Do you want to teach little kids, or big kids?

Emma: Uh...Four year old kids.

Me: Why four year olds?

Emma: Cuz, I'm four years old. I'd love to teach four years olds to learn.

Me: What is your favorite color?

Emma: Red and pink.

Me: What is your favorite animal?

Emma: A butterfly.

Me: That's a bug.

Emma: They are NOT bugs. They are insects. They suck pollen.

Me: What do you think about all of this rain?

Emma: The rain is good for us because we need water to drink, and animals need water to drink. The streams and plants need water to drink, too. It is good for using as hairspray because it keeps our hair down.

(dramatic pause)

Emma: Momma- that's all. We're done with the interview. Momma, we're done.

Two post kind of day...

2011-03-23T01:10:00.000-07:00

Since this diagnosis, a lot has been running through my head. I don't really feel depressed, but I'm working through a lot. Some days I cry at sappy shows, cry because I broke a dish by accident, and then cry some more reading a friends blog. Other days go pretty well, and I can appreciate what I do have. I have accepted that things are not going to be as I planned. I have accepted this diagnosis. I will not accept that I will wither and let myself die early. I am going to fight this.

When I get down, I start thinking about what I can't do anymore...

-My sewing machine is gathering dust, even though I need to sew a blanket for my nephew and want to make dresses for my daughter

-I haven't ridden my bike in so long that the tires are going bad

-I loved gliding along a ballroom floor, feeling like I was floating in the arms on my husband

-I feel like a horrible mother when I can't do something because I am so tired or sore. I can't walk with my daughter down to the park. I can't take her every day to preschool. I can't go to Mommy and Me swimming lessons with her.

-For some reason, I can't get pregnant. It wasn't easy the first time, but this time, my body has said no so far.

-I can't look at adopting, because right now, our we have too many unknowns.

-I used to love getting a good work out at the gym. The rowing machine was my favorite, and now I can't row for fear of locking up my muscles for days.

-I can't go to theme parks, fairs, charity walks, etc. like I used to. Now I have to do it in a scooter that makes me feel self-conscious, and garners strange looks.
-I long for the afternoons I spent as a child horseback riding. Sitting high in that saddle while the beautiful horse cantered freed and fed my soul.

I can do some things, though.

-I can sit on the couch and catch up with the friends that I miss so much if they come by the house.

-I can read to my little girl, paint her nails, give her a 'pedicure', talk to her about how school went today.

-I can love my family and friends with all of my heart. This has made me appreciate those that are dear to me even more.

-I can still craft...sometimes.

-I can write, and it helps. Writing lets out the tears, but letting out the tears is helping me to accept and understand our new reality.

-I can be there for my friends in whatever way I can, even if it is just to listen.

-I can curl up with my husband and watch a movie instead of going out for the night.

-I can research this cruel disease, and find the best treatments with my wonderful doctors.

It isn't all bad, and I see that. There is sunshine on the other side of this cloudy day. We are going to call to check on the status of the portacath surgery and IVIG referrals and insurance approvals this week.

Please pray that the red tape is dealt with quickly, and that we can get treatment going as soon as possible. Please pray that the IVIG treatments are effective, that I regain some mobility, and that I do not suffer side effects. Please pray that my family and friends continue to be strong through the Lord. Thank you. :)

Psalm 23

The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.

He restoreth my soul: he leadeth me in the
paths of righteousness for his name's sake.

Yea, though I walk through the valley
of the shadow of death, I will fear no evil:
for thou art with me; thy rod and they staff comfort me.

Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.

Surely goodness and mercy
shall follow me all the days of my life:
and I will dwell in the house of the LORD forever.

Happy birthday Ryann!

2011-03-23T00:22:00.000-07:00

March brought another birthday. My youngest niece, Ryann, turned five today! Five is such a bittersweet age for a momma. They aren't babies anymore. At five, they're already in or will be in kindergarten soon. They start growing taller, they lose that baby fat, and they look like such big girls. As much as us moms wish they'd stay little, they have to get big. My little one will be five in just a few months. I hope that Ryann had a great birthday! She seemed like she had a lot of fun. :)

I even got a chance to cuddle up my cute little nephew, Seth. He's a little over five months now, I think. It makes me so happy to hold the little guy, but I have to hold back the feelings of baby fever in my heart. I don't know if we need to wait awhile right now, or if the IVIG might actually help...I really just don't know a lot right now. But I digress...

Here's the happy birthday girl and with her sister Maggie on the left, and cousin Angelina on the right.

And my brother-in-law, Jeremy, goofing off with his crutches. :)

Adam trying in vain to get the chocolate off of Emma's face. (Btw, she got a new haircut today! More on that later.)

One of my favorite pictures, of Emma, Jacqui, and Seth cracking up.

Someone was ready for a nap. By that point, I think I was ready for a nap, too.

I have a LOT of pictures to go through still. Check my Flikr later this week for updates.

Award

2011-03-18T12:21:00.000-07:00

Jen from The Long and Winding Road gave me this Stylish Blogger Award! Thank you, Jen. You know that I love your blog, too!

The rules of the Stylish Blogger Award are:

Thank the person who gave you the award and link back to them in your post.

Share seven things about yourself.

Award seven recently discovered new blogs.

Contact these bloggers and let them know they've received the award.

So...7 things about me:

1.) I used to sit on our front porch as a kid and sing Beach Boys songs. I'd imagine I was off on a tropical vacation.

2.) I don't really know where college will take me. For now, it is keeping my thoughts on something positive, and that is okay.

3.) When I have some spare time, I volunteer to transcribe historical records. Things like census data and birth certificates.

4.) I really miss horseback riding. When my horse would canter, I'd imagine I was flying through the clouds.

5.) I admit to eating cookies for breakfast on occasion...especially when Girl Scout cookies are available.

6.) For some reason, I've always felt like I had a twin at some point. There were no regular ultrasounds back then, so a vanishing twin is a possibility. (I know, it is strange.)

7.) You can't tell it be the current state of my room, but I love to organize. When I have the energy, things can lean towards OCD. I love my label maker.

The seven blogs I am giving this award to are, in no particular order:

Jen at One Butt Kitchen

Nicole at Bevin's Adventures with Juvenile Rheumatoid Arthritis

Bentley at Red Worm Composting

Raspberry Kidz

Holly at Easy Living the Hard Way

Orren at Happy Chickens Lay Healthy Eggs

The Bishops at Homegrown Goodness

Love your blogs. Enjoy!

Happy birthday Jacqui!

2011-03-17T09:44:00.000-07:00

Twenty eight years ago, my partner in crime was born. She didn't know it yet, though. I don't exactly remember meeting her, but then again, I was only about six weeks old.

That little girl grew into a beautiful, caring, inspirational young lady. She is the kind of person that I could call at 3 am and she'd be there for me. I'm proud to call her my cousin and friend. Happy birthday, Jacqui! Now let's eat some corned beef!

Ouch!

2011-03-16T22:56:00.000-07:00

I woke up this morning to a sore, swollen hand. After getting poked three times in the hand and once in the elbow, I expected to be a little sore. As the day went on, my hand got more swollen. Then I noticed my arm swelling. After awhile, my hand started to get red. Then the read started to streak down towards my elbow. Uh-oh.

So, as soon as Adam got home, I showered and we headed to urgent care. (Did I mention how much I love that our insurance charges a normal copay for urgent care? Love it.) The doctor took a look at it, and said that it looked like either a chemical reaction from a little bit of infiltration, or the beginnings of an infection. He gave me a brace and a prescription for strong antibiotics.

When we got home, I noticed that the redness had gotten worse. Adam called urgent care back to check on it. The nurse heard the chicks in the background, and asked if I had handled any of the chicks since the IV. I had, and apparently that upped my risk of infection. Since then, the redness has gone down though. I have switched the brace for more comfortable coban, and hopefully the swelling will be down in the morning. I think we dodged a serious bullet on this one.

By the way, our chickadees have names now. They are in no particular order: Bennie (Short for Eggs Benedict), Minnie, Jelly Roll, Millie, Nugget, Light Bulb, Snowflake, and Sprinkles. They are getting HUGE! In a couple weeks, they'll be outside enjoying the grass and spring weather.

Wait six hours, and then wait three more.

2011-03-15T18:55:00.000-07:00

Last night was an exercise in patience. After a week and a half of struggling with smaller spasms that felt like muscle tissue was ripping and tearing, Adam said it was time to go to the hospital. I have to go to a Mercy hospital because my neurologist is the big neuro guy for Mercy in this area. At about six PM, we rolled up to Mercy San Juan. We saw everything last night...but mostly it was just sick people with the flu.

There was the girl with what I think was an infection from her insulin pump. The lady with what looked like either acid burns or horrible psoriasis on her feet. The five day old baby that was constipated. The teenager with something that went through his lip...not sure what, but there was a police report. There were four or five pregnant women with emergency symptoms, and an IVF patient that suffering bleeding, possibly from implantation or a loss. Two women came in after swallowing bottles of pills and were placed on involuntary holds after they had their stomachs pumped full of charcoal. Several little kids had high fevers. I saw the same ambulance drivers several times as they brought in everything from heart attacks to lonely elderly folks. I figured that prayer was a better way to spend time than staring at a wall, so I prayed with all of my heart. I prayed for each of those patients.

I quietly dealt with the pain for a long time before I started to cry. Luckily the nurse noticed, and got me my regular medicine and some percocet. It cut the pain enough to deal with another couple hours before I was crying out of pain again. Somewhere past 2 am, I got a bed and a sweet, kindly doctor and nurse that got me out of pain. It took one stick for blood and three painful sticks to get an IV line started. My veins are toast and when I mentioned infusions, the nurse told me to ask for a port-a-cath. We rolled into the driveway when Mom was waking up for the day.

Adam and I got a little sleep before Emma got up for the day. Unfortunately, one of our Barred Rock chicks ate something hard, and we lost her. Emma found her and was so upset. Explaining why it was not a good idea to immediately go and buy another one was lost on a four year old. Little pepper will be buried with love and respect. She brought joy to some dark, dark days.

Adam called my neurologist's assistant, and we got some updates. Plasmapheresis is out because I don't carry anti-GAD antibodies. We are waiting on my insurance company to approve IVIG, and that could be a couple weeks. I'm off the Valium for good, and the Ativan has been switched to three times a day. I have some Norco in case Tramadol doesn't manage the pain. Because neurology hasn't ordered a port-a-cath in awhile, I've been referred back to the rheumatologist to get one put in. We aren't sure now long it will take to get the port in, and get IVIG approved and scheduled since this is such a rare situation. I pray to God that it will be soon, and that it will be helpful. Last night was if nothing else, a lesson in patience and humility.

After dozing for a few hours, we took Emma to get some breakfast. Having a happy face pancake with whipped cream and sprinkles made her forget about little Pepper for a few minutes. Then we took her to Goodwill to find some cute new Summer clothes, and a few books for all of us. Then it was back to hibernating for me. (Or sleeping off the loads of percocet, ativan, dilaudid, and benadryl.)

If you're the praying type, please send out prayer for healing. My mom is having back/neck issues, and I need the Lord's help to get through the next few weeks. Please also pray for those affected by the disaster in Japan. May they all be comforted by His healing and love.

Are you prepared for an emergency?

2011-03-12T22:34:00.000-08:00

Preparing for emergencies is something most of us forget about. Here in Sacramento, our biggest concern is flooding. No matter your area, emergencies will happen. It is just a matter of when. Make sure you are prepared by making the following items accessible in your home.

Please make sure that you have enough emergency supplies in your home, as well. Here are some items recommended by Ready.gov to keep on hand in case of emergencies:

Water, one gallon of water per person per day for at least three days, for drinking and sanitation
Food, at least a three-day supply of non-perishable food
Battery-powered or hand crank radio and a NOAA Weather Radio with tone alert and extra batteries for both
Flashlight and extra batteries
First aid kit
Whistle to signal for help
Dust mask, to help filter contaminated air and plastic sheeting and duct tape to shelter-in-place
Moist towelettes, garbage bags and plastic ties for personal sanitation
Wrench or pliers to turn off utilities
Can opener for food (if kit contains canned food)
Local maps
Cell phone with chargers, inverter or solar charger

Also consider gathering the following items in a ready-to-go bag:

Prescription medications and glasses
Infant formula and diapers
Pet food and extra water for your pet
Important family documents such as copies of insurance policies, identification and bank account records in a waterproof, portable container
Cash or traveler's checks and change
Important family documents such as copies of insurance policies, identification and bank account records in a waterproof, portable container. You can use the Emergency Financial First Aid Kit (EFFAK) - PDF, 277Kb) developed by Operation Hope, FEMA and Citizen Corps to help you organize your information.
Emergency reference material such as a first aid book or information from www.ready.gov.
Sleeping bag or warm blanket for each person. Consider additional bedding if you live in a cold-weather climate.
Complete change of clothing including a long sleeved shirt, long pants and sturdy shoes. Consider additional clothing if you live in a cold-weather climate.
Household chlorine bleach and medicine dropper – When diluted nine parts water to one part bleach, bleach can be used as a disinfectant. Or in an emergency, you can use it to treat water by using 16 drops of regular household liquid bleach per gallon of water. Do not use scented, color safe or bleaches with added cleaners.
Fire Extinguisher
Matches in a waterproof container
Feminine supplies and personal hygiene items
Mess kits, paper cups, plates and plastic utensils, paper towels
Paper and pencils
Books, games, puzzles or other activities for children

Hope in an IV bag

2011-03-12T22:25:00.000-08:00

The past week has been tough. I've spent much of it in bed, curled backwards from the spasms. I alternate between sitting propped up on pillows to laying on my side and hugging my body pillow. My heating pad has been my best friend.

Last week the doctor started me on a trial of Valium. It hadn't worked when I tried with in the past, but things can change, so I agreed to try it again. Valium lasts longer than Ativan, so it is preferable in that sense. On a tiny dose of Valium (only 2 mg) I was feeling like a zombie. I didn't want to eat, I didn't want to drink much, I didn't care to do much but lay there. I was exhausted but couldn't sleep. Adam tried calling the doctor but couldn't get through.

Today we got through to the on call doctor, and he said to go off the Valium. He knew exactly what I was talking about by feeling like a zombie - he had had the same reaction to the medication. So for now, it is Ativan, Flexeril, Tramadol, and Benadryl if i need it to sleep. He also mentioned that the doctor put in a request for approval on IVIG and plasmapheresis. We did our own homework and it is covered, but we still need approval for the expensive treatments.

So, somethings are better, others are in a sort of stasis. I am not sure if I can finish this semester, or if I need to file for an incomplete. I'm going to really look at it tomorrow to make a decision. If I do go through with either of the infusions, I may not have the energy for the first few rounds, and I'll need the rest.

If you're the praying type, please pray for the healing that my body needs. Prayers are also requested for my brother in law, who is suffering from a nasty skin infection. Last but definitely not least, please pray for those affected by the earthquake and subsequent events and damage in Japan. What a horrible tragedy.

An open letter to family and friends...

2011-03-11T14:01:00.000-08:00

Having SPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not know even a little about SPS. In the spirit of informing those who wish to understand, these are the things I would like you to understand about me before you judge me:

SPS causes painful, unrelenting muscle rigidity and spasms. I have had doctors gasp and tell me that my muscles are “stiff as a board.” If I am fatigued, stressed, or get startled, the rigidity turns to painful spasms that can last for hours. The tightness in my neck and shoulders causes headaches that often turn into migraines that can last for days. The treatments include drugs like Valium, Ativan, muscle relaxers, and pain killers that leave me sleepy. Other treatments are expensive and exhausting and include IVIG infusions and plasmapheresis. Eventually, I will most likely need a wheelchair and may see joint deformity. Luckily, this condition is not passed down in families. I do not know why I was given this challenge. I do know that I am fortunate to have found an excellent group of doctors to follow my care.

Please understand that being in pain doesn't mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion. If you visit I probably don't seem like much fun to be with. I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about your life too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time, and in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or I am not extremely tired, or that I am getting better or any of those things. Please don't say "Oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many diseases you are either paralyzed or you can move; with this one it gets more confusing.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.....it applies to everything.

That's what SPS does to you.

Please understand that SPS is variable. It’s quite possible (for me it’s common) that one day I'll be able to walk to the park and back, while the next I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me much worse. Another statement that hurts is "You just need to push yourself more, work harder..."SPS includes malfunctioning nerves and muscles, and our bodies don't repair themselves the way yours do. Pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.

Please understand that SPS may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.

Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). SPS does not forgive.

Please understand that I don't want you to suggest a cure to me. It’s not because I don't appreciate the thought, and it’s not because I don't want to get well. It’s because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with SPS would know about it. This is not a drug company conspiracy; there is worldwide networking (both on and off the Internet) among people with SPS, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.

In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist. I need you to not be afraid of what to say or do. Just letting me know you are there for me can mean so much. Some days what I really need is a hug. You're my link to the outside world.

And as much as possible, I just need to be understood.

Feeling Blue

2011-03-09T12:45:00.000-08:00

I've been down in the dumps this week, and you know what? That is just fine. Sometimes you just need to take ownership of mild depression and allow yourself to be blue. Accepting that you are hurting and allowing yourself to work through it is a heck of a lot healthier than ignoring the pain.

I have a lot on my mind lately. Luckily I have the best husband and doctors I could ask for at this point, and I have a big family and group of friends to turn to when I need it. I really don't know what my life will look like a year from now, let alone five years from now.

For now, my neurologist is observing my condition while treating the symptoms the best that we can. I was switched to Valium from Ativan since it is longer acting, and the dose will be adjusted accordingly. He also gave me a prescription for Tramadol, the pain medicine that the last neurologist made me stop taking. Her excuse? If you're on pain medicines now, what do we use later when it gets worse? You use STRONGER medication, you dolt! Tramadol is a good choice in this case because it is not addictive and I do not have side effects while on it. It allows me to live a much more normal life.

My doctor also is supportive of me filing for disability again, so we are prepared to walk that road again. Hopefully having his support will make it a little easier this time. I also have a much more serious diagnosis, which is beneficial for benefits...but crappy in real life.

I'd like to get away with Adam for a couple days. I need to dig my feet in the sand and let my soul be free. We'll see...

Answers?

2011-03-08T11:38:00.000-08:00

After we drop Emma off with my dad, Adam and I are heading downtown for an appointment with my neurologist. I hope that we can get some more answers, and a treatment plan. I have in my mind what I would like to try, but it is up to him and the insurance company. So far we haven't had an issue getting any tests or treatments approved, but I'm praying that it stays that way. Here's to a good appointment, and hopefully a treatment that helps.

My best friend...

2011-03-07T10:01:00.000-08:00

I think that it is time to praise my best friend, my dance partner, my love. Somehow it was in God's plans for us to meet at the most boring workplace I've had the pleasure of working at. That meant a lot of conversations to fill the time. We became fast friends, and eventually, we became a couple.

He loves me unconditionally, no matter my flaws. His eyes still light up for me. He may not be a hopeless romantic like myself, but in all honesty, that is okay. He is the best father I could have asked for. He loves our little girl with all of his heart and soul. He would do anything for us, without even a question. Lately he has had to play chauffeur and advocate for me when I am not able.

For that, I thank him. I thank God for meeting him. I love him with all of my heart and soul. Love you, Baby!

questions...

2011-03-06T13:26:00.000-08:00

This past week has left me with more questions than answers. Will this progress? Will treatment help? What kind of treatment should I go for next? Will I be able to work again? Should I reapply for disability benefits now, or wait? Will I have a normal life expectancy because I do not have the anti-GAD and anti-amphiphysin antibodies?

My next follow-up isn't for another month. I think that I'll call the doctor's assistant to see if we can get the ball rolling on treatment before then. I think that I'd like to try ivig and/or plasmapheresis, but I have horrible veins. Will I need a medi-port? Not quite sure...but it is a strong possibility.

Right now I could really use prayers and hugs and love. So if you see me, pull me in and hug me. I'm going to get through this - but I need my family and friends more than I ever have. I'll let my favorite troubadour play us out...

Confirmation

2011-03-03T15:11:00.000-08:00

Today I made the trek back to midtown to see a rheumatologist for a consultation. My neurologist wanted him to "think outside the box" to see if he had any ideas on what is going on. Aside from the negative lab work, he feels that this is a pretty textbook case of Stiff Person Syndrome. That confirms that neurologist's suspicions, and it looks like my next neurology appointment will be to discuss treatment options. The upside is that since I have had symptoms for years with no diabetes, cancer, or serious autoimmune issues, I am unlikely to develop those comorbidities of SPS. I do not need to see the rheumatologist again unless the symptoms change and I need to be reassessed.

The treatment options are not fantastic, but they seem to work fairly well in the studies and anecdotal reports that I have read. The first stop is Baclofen, which wasn't particularly helpful for me. Next is Valium, which wasn't very helpful. I have only taken a low dose of Valium, and with SPS the dosage is usually fairly high. After that is what I am currently on - Ativan and Flexeril.

Steroids have been effective for me, but I am not willing to risk the long term side effects. There is no question of IF you will develop side effects with long term treatment. The question is WHEN. It could be tomorrow, or it could be twenty years from now. Aside from that, immuno-suppressants can be effective. As a last resort, plasmapheresis and IVIG treatment can help.

I can say that I have been nothing but pleased with the doctors and staff at Mercy. Every person I have spoken with has been warm and caring, and they actually listen. After getting brushed off by so many doctors in the past 13 or so years, finding a doctor that really listens and cares means so much. Their billing system is a little wonky, but I'm willing to deal with a little wonkiness in exchange for good care.

Cheep cheep!

2011-03-02T22:00:00.000-08:00

Our chicks are officially growing up. The Barred Rocks are 28 days, and the Hamburgs are 33 days old. It is amazing how quickly these little birds grow. Last weekend we found a couple birds out of the brooder. They were sitting on top of the closed worm bin, looking around like they ruled the world. We were a behind on the ark project after getting sick, so we had to rush to get the run portion of the ark completed. The fencing and doors went on, and in went the chicks. They'll stay inside for awhile longer until the weather is warmer.

The girls have figured out that I am their food source. I have to smile every time they follow me in the garage, all while cheeping at the top of their lungs. I thought dogs could be big mooches...that was until I met these little girls. I just hope that they ARE all girls. I am a little worried about a couple of them, but we will have to wait and see.

Here is a video of my little piggies. They don't seem to like bananas. More for me. :)

the brain doctor

2011-02-22T20:10:00.000-08:00

Today Emma and I trekked down to midtown Sacramento for my neurology follow-up appointment. My doctor is a popular guy, so babysitter or not, I'm going. As it stands, we have no real answers, aside from what this is *not*. He mentioned the words "Stiff Person Syndrome" again, and my heart sunk a little. It is better than many of the diseases I have been tested for, but having a rare, serious neurological condition is scary. Even though I tested negative for anti-GAD antibodies, 20% of patients test negative but still meet the rest of the diagnostic criteria.

Because I had almost no spasms while taking Decadron after oral surgery, the doctor is more convinced that this has some autoimmune component to it. He sent off a referral for a Rheumatology consult, and I got a call from Rheumatology right after I got home. Next week I'll make the trip back downtown to see the rheumatologist. Maybe he will have some insight. Maybe not. At this point in my life, I am used to hearing "I just don't know."

Not knowing hurts. Not being able to move on and live the life I'd love to have hurts. I want others to understand that this isn't me being lazy, or fat, or whatever else people have labeled me at some point or another. I don't like the looks I get if I go off the medicine and go out hobbled over. I don't appreciate the sneers when I use a scooter while we're out in public. Not being able to have a family full of little ones hurts the most.

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.” - Anonymous

Curled my hair for my neurology appointment. Heck, why not?

Revenge of the blood suckers...and more.

2011-02-17T23:30:00.000-08:00

We haven't talked about it much, but we've been trying for awhile to give our little girl a brother or sister. It just hasn't been happening for some reason. Back in December, I went to my doctor for some lab work. I had a feeling that something was "off". There was a mix-up when they updated my address, and I am horrible at remembering to call, so I finally got the results. Something was off. This Saturday I get the pleasure of fasting again for further testing.

What is off? Well...my thyroid results were way off. My TSH levels were off the charts low, as was the T3 level. T4 came in just below the reference range. (The "normal" range.) Normally, if T3 and T4 are low, TSH should be high. It sounds like my pituitary gland has gone a little wonky, but I'll find out more after they retest to double check the results. I'm actually a little relieved to have it be the thyroid, because it is less difficult to treat than other hormonal issues. Hopefully we can get my levels back into the normal range, and it will happen. I'm crossing my fingers. I've talked to a number of doctors, and none see much of an issue with the muscle spasms. I may have to switch medications, but I can manage that.

In other news, my EMG results were completely normal. I figured that they would be, but my new doctor wanted to retest to be absolutely sure. So far, they have ruled out any autoimmune issues as well as the nasty things like MS, ALS, etc. There could still be some crazy condition out there, but for now we are focusing on treating the symptoms. I asked the doctor's assistant to see if a muscle biopsy might be helpful, and I have an appointment next week to talk about it with the doctor.

Our chickies are doing well, too. We have the four original Silver Spangled Hamburgs, and six Barred Rocks that are a few days younger. They are getting so big! The girls have wing feathers, tail feathers, and they're getting feathering on their backs now. It is absolutely hilarious to watch them play keep away - especially with worms. Worms are like chicken candy! This weekend we need to work on getting the coop together. Hopefully the weather will break long enough to get most of it done. These girls sure are cute, but I'm a little tired of vacuuming the garage every couple days. :)

Rough Start

2011-02-02T13:07:00.000-08:00

What a week this has been. Last night I finally broke down crying. I had been stoic until that point...just, detached. Last night it hit me. Emma started crying, I was crying, and at some point I think Adam was crying, too. All of that fear and grief over losing so many little lives came out. It felt good to let it out, and we did.

We're at five little chickies now. One was acting lethargic last night, but she survived and is fine. Poor thing was probably just tired. I noticed some "pasty butt", and spent a little bit of time cleaning their tushies. If dried poop gets stuck on their butt feathers, they won't be able to pass waste and will eventually die. After getting them clean I used a q tip to rub a little olive oil around their vents. So far, so good. I haven't seen any pasting since.

This morning I woke up to find five little fuzzy butts taking a nap. You can't help but smile. They are too stinking cute. As far as filling out our coop with ladies...I gave Adam a wish-list from a local hatchery. Maybe I'll get some for my birthday. :)

Tears and chickies.

2011-02-01T12:29:00.000-08:00

After their long awaited arrival, our chicks showed up yesterday. Things did not go exactly as planned...or well, anywhere near like the plan. We ordered 25 Silver Spangled Hamburgs from McMurray Hatchery, and they included a free "rare and exotic" chick. Since they were coming by mail, I knew to expect that one or two might not make it. Emma wanted to go to preschool with Grandma, so I would be able to check the box before she would be home.

I expected a call bright and early. By 11:30 we still hadn't heard anything, so Adam called the post office. Our chicks were there, and they had put them on the truck for delivery. At the time, I thought it was nice that I didn't have to go get them. I assumed they would put the chicks in one of the minivans they use, not the regular mail truck. Right after noon, the mailman showed up with the chicks. He looked excited, but told me that they weren't "as active as they were before." Uh-oh. I knew that wasn't a good thing. I didn't hear any movement in the box, and braced myself for the worst. It really was the worst.

I knew that if any were alive, they were chilled and needed warmth immediately. I stuck the whole box into the brooder, and lifted the lid. It looked so horrible. I could tell several were stiff, but I tapped the box gently to see if others would move. When I saw some movement, I got a glove and went to work. Each chick came out, and got moved to the warm side of the brooder. I took them one by one, and dipped their beaks in water until they had a drink. Then they went back into the brooder to keep warming up. At that point, eight were dead in the box.

Mom and Emma showed up about a half hour later, and some of the chicks were starting to put pick their heads up to look around. I mixed up gro-gel, which is a bright gel that provides nutrients, fats, probiotics, and liquids to the new chicks. It took awhile for the chicks to gain interest. At that point we had about six that were looking weak but improving. The rest were still laying around. I took the sickly chicks again, and dipped their beak a couple times so that they would drink. The worst got moved to the other side of their brooder with their own light, and the healthier birds were on the other side where they could move around.

Unfortunately, we started to lose about one per hour. We tried to keep Emma out, and visited about once an hour so that it was a calm environment for the chicks. Some point after dinner, I was so nauseated by it all that I had to stop. Adam, bless his heart, told me to go rest and he'd take care of it. By bed time, we had 12 of 26 still alive.

This morning Adam buried those that had died yesterday. The best we could do was to make sure that they got a decent burial under the crepe myrtle trees in the back yard. When I woke, there were seven left. I haven't checked back in yet, but I think another is on her way out. That leaves us with only six chicks left. We had intended on keeping six adult chickens, and only six chicks does not leave room for any later losses.

Adam called the hatchery today, and they were very understanding. They refunded us for the 19 that passed. Then, Adam called the post office. He explained that we lost most of the chicks, and let them know how they might make sure no more die. (Keep them warm, call immediately, etc.) The poor lady on the phone started crying and felt horrible.

We're praying that the rest are okay, and that we don't have to go through this again. It's always hard to lose animals, even when you aren't really attached yet. The pictures are of a couple of the healthiest looking survivors.

Tuesday afternoon...

2011-01-26T00:48:00.000-08:00

Our Tuesday afternoon...

We stopped to smell the pomanders we made during the holidays...

Then we stopped to enjoy the early color in the garden...

Then we dug around and stomped in the mud while we tried to decide what

we'll plant when the weather warms up...

I Heart Faces - Innocent Wonder

2011-01-24T12:12:00.000-08:00

This week's theme at I Heart Faces is innocent wonder. My daughter wanted a mad science party for her fourth birthday. Instead of sending plain invitations, I decided to get creative with a photo invite. We got out some mason jars and vases, and filled them with colored water, glow sticks, and some dry ice. Other mason jars were filled with a little baking soda, and some bottles for icing cakes got filled with colored vinegar. Then we let her go at it. It made for a big mess in the kitchen, but lots and lots of fun and giggles. :)

Be sure to head over to I Heart Faces to see the other entries! :)

open hearts

2011-01-20T11:37:00.000-08:00

One thing I've learned in life is that my mountain could be a heck of a lot steeper. You know...that mountain we all climb. That mountain called life. As a mother, my heart breaks for all of the children out there already having to climb a steep mountain. These little people already are fighting the fight of their lives. I thought I'd share some of the blogs that I follow. I pray for these little guys, and more prayers and happy thoughts couldn't hurt.

Aviana - My little girl's preschool friend, and Mom's former student. You can't help but fall in love with this little angel when you meet her.

Aidan - I heard of Aidan's fight against cancer on Regretsy. He loves monsters and is full of spunk.

Cooper - Cooper lives in the Bay Area and is fighting cancer like Aidan.

Daisy - Daisy is fighting against a recurring Wilm's tumor. Her daddy is a preacher at Reality church, and an author.

Christian - I found his blog through Aviana's. Christian suffered a brain injury due to a drowning accident.

Bevin - I forgot to add this one (blame it on the Vicodin, because it just slipped my mind.) Little Bevin is the daughter of a high school friend. She was recently diagnosed with juvenile rheumatoid arthritis.

Please send up your prayers, thoughts, and warm fuzzies for these brave kids and their families. They can use all of the strength, comfort, and caring that we can give.

I Heart Faces - Best of 2010

2011-01-03T22:35:00.000-08:00

This week's challenge at I Heart Faces is the Best Faces of 2010. What a hard photo to pick! I had so many to pick from...but I think this is up there on the favorites list. I absolutely love this printed on metallic paper. We spent the day at the inlaw's houseboat, checking out the ducks and fishing. This is my little mini-me checking out the scenery. :)

Make sure to head over to I Heart Faces and check out the rest of the entries!

The possibilities...

2010-12-23T09:56:00.000-08:00

With the new year coming at me like a freight train on a midnight run, the possibilities of the next year look enticing. I am not big on resolutions - they don't last too long. Here is what we'd like for this next year.

-I am working on my AA, and Adam is planning on adding to his AS with a BS degree.

-At the end of the next year, I hope that I'll be healthy enough to work some, or at least have a solid diagnosis to apply for SSI.

-I'd love to be able to get my mobility back, to turn my atrophied leg into one that will support me on quick jog.

-We plan to transition from working on learning when Emma wants to home school kindergarten next fall.

-We hope for another addition to the family. Emma prays to God, and told me she'll have a sister named Elizabeth. (Make that Elizabeth Rainbow Flower)

- We'd like for Emma to start soccer and 4-H this next year. She loves soccer and animals, and both teach valuable skills.

But mostly, we are just hoping for a normal year with normal challenges.

joy out of sadness

2010-12-20T15:07:00.000-08:00

I had the pleasure of another day at Mercy San Juan that ended in more frustration and confusion. My heart has been racing for no apparent reason, and tachycardia is a little scary. My second EKG looked great, my blood work is great, the poured fluids into me, so there is no apparent reason for it. I feel like a fountain lately, but I've just got to get it out. Having that time of uninhibited bawling helps me to stay level-headed the other 99% of the time.

It was Adam’s turn to cry last night. It is different being the shoulder cried on. Poor guy got dehydrated and was peeing something closer to a tequila sunrise than straw. We were worried that he was getting another kidney stone, but he lucked out with just a UTI.

It's that time of year to look back at what has transpired, and it has been well...crazy. We were heartbroken to lose our home due to my disability and a very shady mortgage company. Our little dog, Hawkeye, went up to doggy heaven. We lost a few friends, and gained some more. Some goals were smashed, and others renewed. Living with my mom has been a blessing. Emma gets a lot of Grandma time, which is truly beneficial to both of them. I’ll forgive getting called Grandma at least once a day to see them like two peas in a pod.

I decided to go back to school. While I have no ability to forecast where I’ll be when I complete the schooling, I do it anyway. Life dealt me a whole truckload of lemons for some reason, so I might as well make the best damned lemonade that I can. This was the first semester that I finished without work or my health causing serious issues. I had dropped so many classes because of that wonderful job at Swatch that I was on academic probation. Not anymore!

This semester’s GPA was 3.2, so I got off that icky list. I even managed to score an A in my Library Research Process class. My professor put the icing on the cake by asking if she could use my pathfinder project to show future classes what a pathfinder should look like. The only class I didn’t get an A or B in was one of those 1-unit, preparing for college types of classes. Somehow the class didn’t even have a book or a real curriculum, but I got a C. Meh. Wish me luck for next semester with a full load. I signed up for Food, Science, and the Environment; Intro to Digital Imaging; Introduction to Mythology; and Human Sexuality.

At times I feel like damaged goods without much accomplishment to speak of. It made my day to get a nice compliment from my professor. (Okay, more than just a day…maybe a week.) This next year holds promise as every new year does. By the end of next year, I could be a semester away from an AA degree. By the end of next year, I pray that we will find a remedy to the relentless rigidity and spasms. I pray that by that time, we might have a new little member to our family.

Here’s a song with lyrics that touch my soul, and really describe my life.

Artist: Scott Darrell
Song: A Crooked Road
Album: A Crooked Road

I walk a crooked road to get where I am going
To get where I am going I must walk a crooked road
And only when I’m looking back I see the straight and narrow
I see the straight and narrow when I walk a crooked road

I sing a lonesome song to anyone who’ll listen,
To anyone who’ll listen I ‘ll sing my lonesome song.
And when I hear you singing too, the sorrow sounds so hopeful
the sorrow sounds so hopeful, when I sing my lonesome song.

And a lonesome song will be my true companion
When all else has abandoned for singing of their own
And a lonesome song will fill my days with gladness
Make joy out of sadness when I sing this lonesome song, to you

I love with all my heart, there is no way of stopping,
I have no way of stopping I just love with all my heart.
Through the broken and the beautiful, the bad news and the good news,
The bad new and the good news is I love with all my heart.

And a loving heart will be my true companion,
When all else has abandoned for loving of their own.
And a loving heart will fill my days with gladness,
Make joy out of sadness when I bring this loving heart, to you…

I long to be a happy man, in this life that I’ve been given
In this life that I’ve been given I long to be a happy man.
When the noise turns to stillness, I see I have the makings.
I see I have the makings to be one happy man.

And a happy man will be my true companion,
When all else has abandoned for happy of their own.
And a happy man will fill my days with gladness,
Make joy out of sadness when I show this happy man…

And a happy man will be my true companion,
When all else has abandoned for happy of their own.
And a happy man will fill my days with gladness,
Make joy out of sadness when I bring this happy man, to you…

I walk a crooked road to get where I am going,
To get where I am going I must walk a crooked road
And only when I’m looking back I see the straight and narrow,
I see the straight and narrow when I walk a crooked road…

Frustration is my middle name.

2010-12-17T19:12:00.000-08:00

We struggled through the rain to get downtown this afternoon for what was a pointless follow-up appointment. I found out that my doctor and the doctor doing the EMG were going back and forth over the need for a repeat. Apparently my last Dr. left very vague reports, and while the new Dr. could tell something was wrong, he couldn't tell what. I don't go in for that test until the 3rd, and it'll be at least a week for his report. My follow-up is on the 14th of January.

The medicine helps some. I'm on Ativan and Flexeril, and Benadryl if needed. It doesn't make my life anywhere near normal, though. Something as simple as going to the grocery store leaves me hanging onto the cart with white knuckles so that I am sure I won't trip. Potholes and speed bumps make my neck lock up enough that my lungs feel tight.

The compression in my neck is somehow making my resting heart rate go up, and that isn't understood either. The Dr. told me to see my primary care Dr. for an echocardiogram, but I don't have a PCP. In this crazy mess of a year, I haven't managed to get a primary care doctor. Trying to find a doctor, then get an appointment, then somehow get the ECG scheduled would take forever. What do you do?

I broke down crying again in the car after the appointment. I'd much rather be put in the hospital for a couple days and get the testing done all at once. But somehow, I've managed to stump several of the best neurologists in this half of the country. They don't even know what tests to run. They're positive something is wrong, but what? I don't know what else to do but cry. This has left me feeling powerless and weak. Most of the people around me really don't understand, and they either stay silent or stay away. It is a shame, because I would welcome the love and support.

I want nothing more than some normalcy...some security. I have the will and the drive to accomplish so much, but my body tells me no. No job, no gardening, no shopping, no exercising. No taking your daughter to Disneyland or the snow. No living a normal life. Sigh.

Waiting...waiting...waiting...

2010-12-14T15:11:00.000-08:00

It is hard to say that there still are no answers. I have been playing phone tag with Mercy San Juan for two weeks now, just trying to get an appointment scheduled. The EMG needs to be redone differently. I'd rather tell them to shove the electrodes and needles you know where...but it needs to be done. Hopefully they are easier on my than others have been.

The cold weather is here, and while I love it, my constantly rigid muscles do not. My muscles despise the beautiful pitter-patter of rain. My muscles hate the brisk morning air. Mostly, my muscles want me in bed, swaddled in blankets, and pumped up on muscle relaxers. I'm not exactly the life of the party right now. After a long day of the ups and downs, I'm tried and cranky. It figures, right?

Somehow in this craziness, Adam and I are aching to bring another child into our lives. My doctors don't seem to think it will be a problem, but my body isn't cooperating. All that time we spent trying to adopt, trying to NOT get pregnant because of these muscle issues...and now we try and can't. Go figure. I went in for blood-work this past weekend, so maybe we'll at least have answers in that arena. Until now we haven't really talked about it. It rips your heart out in a way that many just don't understand.

Emma keeps asking when she'll get a brother or sister, and all I can tell her is that it will happen when God is ready. Sometimes she tells me that God spoke to her, and that a baby would come soon. It makes my heart hurt and my eyes tear up, because of her candid conversations with God. I can't tell her the whole truth, just that it will happen when it happens. If I had the choice, we'd have a few kiddies by now. I'm not sure if it is in God's plans...he's pretty mysterious that way.

Partly to keep myself busy while school is out, and partly to get us eating well, I have taken up lacto-fermentation. Most of us are so far removed from food sources that thinking about bacteria in our food is disgusting. Lacto-fermented foods are chock full of probiotics. So many, in fact, that food does not spoil because there is such a high number of good bacteria.

From left to right in this picture we have garlic kraut, garlic pickled green beans, regular pickles, sweet & spicy mustard, and cranberry sauce. Last week we made some cortido (latino version of kraut with carrots, cilantro, and peppers) and it is SO good. I have been eating it with just steamed rice for a quick lunch. I made ketchup last month, and it was such a hit that I started another batch last night. If you're interested, I highly recommend Wild Fermentation by Sandor Katz.

I Heart Faces - Self Portrait

2010-12-06T10:21:00.000-08:00

This week's challenge over at I Heart Faces is self portraits. This photo was taken at one of the Sno Parks off of I-80 on the way to Tahoe. We had a great time, and we'll have to go back again this year.

Down comes the rain...

2010-12-05T17:59:00.000-08:00

This week has been something of toss-up. My classes are completed for the semester. To be honest, I'm afraid to look at my scores. My goal this semester was to pass the classes, and to not give up and drop any. That may not seem like a lofty goal. When you deal with the day in and day out of a disability, that is a pretty reasonable goal. Next semester I'm signed up for twelve units, so we will see how it goes. I stare blankly at a people when they ask what my goal is with going to college. Frankly, at this point I don't know.

I often get asked why I do not go into photography professionally. There are many reasons, but it all comes back to my lack of drive for sales. Honestly, I hate having to sell myself. I dislike interviews, I hate self-reviews, and I struggle with even a self biography. Then there is the rigidity...some days I just can't lift my camera to see through the viewfinder. I really would love to give it a go, and hopefully some day I can.

On another note, we finally got around to visiting the Aerospace Museum of California. We live right down the road, and I managed to win tickets a few weeks back. It was drizzling on and off, so we didn't get to go in as many planes as we would have liked. I managed to get some decent pictures, though. You can see the rest here.

I Heart Faces - Scenic B&W

2010-11-28T22:53:00.000-08:00

This week's challenge over at I Heart Faces is scenic black and whites. For some reason this image struck me, so here it is. These are two of my nieces hamming it up this Thanksgiving. Are leaf covered parks scenic? You'll have to decide. Either way, I think they're pretty cute.