All kinds of fun tomorrow

Starting at 10 a.m. (more like 9:40 a.m. for check-in) I will be spending most of my day at Willamette Falls Hospital. First up will be my Lung Function test--unless I hit the lab before that and have my blood drawn. Then it's off to Radiology for a CT scan of my chest, sans contrast. The entire process should take about 3 hours. The drive there is roughly 20 mins. but it's easy as it's straight down 205 and then a few turns after you reach Oregon City.

I started my 50,000 units of calcium last Thurs. Tomorrow I will take my second dose. So far I haven't noticed any drop in the bone pain, yet I'm remaining optimistic that after my second or third dose I will notice an improvement. I also began the B12 supplementation and am way less anxious than I used to be. This was a surprise side effect that I am thrilled about! I wish I would've known sooner about my B12 level being somewhat low so that I didn't have to suffer like I did. It wasn't anything major, however I was starting to hate going too far from home. I can't tell you how nice it is to feel "normal" and not stress over something as silly as running to the store. At least now I know those anxious feelings were not all in my head.

Fatigue-wise I hit the wall again a few days ago. Before it happened I had horrid nausea one night. So bad that I was convinced I would be sleeping in the bathroom again. The next day I woke up feeling as if I had a bad hangover, without the headache, and could barely function. Today I feel much better, although "much better" for me is still not good. :o/ Tonight Megan and I actually ran to the mall so we could each get a pair of Crocs. I had been coveting the Alice version but then I tried them on, and while I liked them (they are so cute!), I wasn't thrilled with how it fit around the sides of my foot. Nevertheless I asked the gal helping us to order me a pair as I figured I'd grow to love them. Megan, on the other hand, fell in love with the Alice in red. Then she spotted a fox Jibbitz (the little charm things you punch through the holes in the shoe). Naturally we had to get two RED foxes. :o) She was thrilled. While Megan had been trying on her shoes I saw the Celeste Croc and thought they were pretty stinkin' cute too. Tried on a pair and yeah...heaven. Of course they didn't have my size in the color I wanted, so the gal took my number and promised to call when they came in. Before we left I thought I'd check another store that carries Croc's and lo and behold, there at a tiptoe's reach was a size 7, Chocolate brown, Celeste. Sweet roll! I wore them around the house when we got home and though it was nice, my feet were already yelling at me from walking around the mall so it wasn't quite as wonderful as I thought/hope it will be. I am still on the search for the most comfortable shoes around. I've tried so many and none have fit the bill. Maybe, just maybe I've found THE ones.

New rheumy

My first visit with my new rheumatologist, Dr. S took place the day after Christmas. My dad was in town so he stayed with the kids while Ryan went with me. I figured the appt. would be a quick one and that we would be in and out in no time. I was apparently the first patient of the day and after having to change rooms due to the computer in the first one not wanting to cooperate, I had my blood pressure, pulse rate, and temperature taken. Dr. S came in shortly thereafter and greeted both of us warmly. From then we went through my history, some lab tests I had from Dr. B, and so forth. That part lasted about an hour. Truly shocking and amazing to me! I am so used to being rushed through an appt. that I was surprised to have a doctor spend so much time with me. She then gave me a thorough exam, spending lots of time on various spots as if she really was checking me out. Dr. S said I definitely have markers for Hypermobility Syndrome, yet she's not convinced I have Undifferentiated Spondyloarthropy. She also seems to think I might have Fibromyalgia, although when she examined my chest she noticed the same thing Dr. Beals did--I can't inhale or exhale well at all. If it is a lung issue than there is still a chance I have Fibromyalgia I guess. If it's a restrictive one then it goes back to Ankylosing Spondylitis as that would mean my ribcage was fusing/fused. But even with all of that she was concerned about my bone pain as Fibro doesn't cause that. She asked if anyone had ever checked me for a Vitamin D deficiency...they hadn't. We went over more things and she asked if she could make copies of all of my lab work that I had brought. Again, this impressed me because not only did she take the time to look at my "List of Symptoms" that I gave her without cringing, she wanted all information about me she could get her hands on. Felt very reassuring. At the end of our visit she wrote orders for lab tests, orders for low back xrays, and a prescription for Trazadone to see if it would help me get more rest and thus decrease my pain. Both of us agreed that rather than try to prescribe anything at that point it would be best to wait until the results of the labs and xrays were back and then go from there. She also saw no reason for me to get back on the Sulfasalazine since it hadn't brought much pain relief and had the chance of causing Hemolytic Anemia as well.

Ryan liked her, I liked her, and I felt good when I left her office. I don't know that I have Fibromyalgia...and obviously I was quite hesitant about that part given what Dr.'s A, B, and B have told me, not to mention how shitty Dr. N (the gastro) was about it all...but right now I'm just glad that she seemed open to me, treated me with kindness and compassion, and seems to want to get to the bottom of things for me so that she can help me feel better again. That's all I ask for in a doctor.

I had the blood drawn, did the xrays, and yesterday got a call from Dr. S about my results. Turns out I do have a Vitamin D deficiency and that may very well be what is causing the bone pain. I am trying not to be too hopeful about this being a "fix" for the pain, but it's hard not to be as it would make sense! That would be so wonderful if after starting the prescription Calcium that I get relief in at least that portion!! I read up on bone pain with a Vitamin D deficiency and often times people who have it do not respond to the typical pain relievers/killers--just like me. The Oxycodone takes the edge off of my pain but it never truly takes it away. Again, trying not to get overly hopeful and yet I am. :oD Dr. S also wants me to take a B12 vitamin as I was low on that, not below normal but right on the cusp, so I started 1 mg. a day yesterday. Unfortunately the pharmacy I go to closed early last night so I have to wait until tomorrow to pick up the high dose D. I will be on that for 8 weeks, then I will start a Calcium supplement from here on out. It sounds so easy doesn't it?! Weeeeeee!

X-Ray-wise the lesions/cysts in my pelvic bones haven't changed, my spine looks good, but...the radiologist forgot to check out the SI joints. Happens almost every time. Given the large "holes" in my ilium, the radiologists get very excited and seem to forget everything else. Even Dr. S agreed with me that it seemed to be the case. We couldn't blame them as they are truly "weird" and very, very rare. So, she is going to have the bone radiologist re-examine the views to see what he thinks about my SI joints and get back to me sometime next week. Overall I am pleased with her thus far and am optimistic that she will be a great ally in my care.