I don't know if I've mentioned it here for not, but for a while now I've been dealing with flu-like body aches. At first I figured it was due to hypothyroidism, and it might have been or still could be. Last time they checked my thyroid my levels were fine and I've been on meds for that quite a while now, but I haven't seen any improvement. Other symptoms (like chills) seem to be better. Along with that I've been having an awful time sleeping because it hurts. It feels like my whole body is bruised, and it gets worse the longer I put pressure on it. So I toss and turn a lot trying to find a way to sleep that hurts the least. I never feel rested when I wake up and am often quite stiff. I also keep having these sensations where it feels like I've walked through a spider web or there is a bug crawling on me.
I went to see my primary doctor about it and they ran a few tests, one I know for lupus, but they came back fine. I was told they didn't know what was causing it and to see a specialist. My first appointment with the rheumatologist was yesterday. I was told it would be $200 which is a lot but it's important. I walk in and literally everyone else in the waiting room was at least twice my age, which always makes me feel good about myself. I'm tired of hearing "you're too young for __!"
The receptionist, nurse, and doctor were all nice though. The doctor seemed to take me seriously. I'm always afraid of being treated like it's all in my head, I'm a hypochondriac, I'm a drug seeker, etc. He asked a lot of questions and pushed on a bunch of body parts, most of which hurt. Then it became a game of "which is better, this or that" like when they show you the films at the eye doctor.
I have no idea what he suspects is going on but they gave me two injections, one on each side of my bum. I'm supposed to keep track of whether they are helping and if so how much and how long it lasts. So far I don't know because the injection sites hurt quite a bit. I think my back doesn't hurt as much, but it could be a case of my brain focusing on the new pain, you know? Body aches seem to be just as bad. The injections didn't hurt nearly as much as lupron thankfully but I couldn't sleep on either side or back and it hurts to sit too. I think I'd be okay if it was only on one side or the other. I was also given an ultrasound and I have to do a sleep study Thursday night.
On top of all that he's ordered
15 blood tests. Parathyroid hormone, Vitamin D3, angiotensin-converting enzyme, Erythrocyte Sedimentation Rate, Ferritin, Human Leukocyte Antigen B27, Thyroglobulin Antibody
, Thyroid Peroxidase Antibody, Thyroid Stimulating Immunoglobulin, Vitamin B12, BUN:Creatinine Ratio, Sjogren Antibody Panel, Celiac Disease Comprehensive Panel, and Iron Saturation. I think my primary doctor was mostly going by my TSH as far as my thyroid goes, so it seems like he wants to investigate that further. I know what the vitamins, iron, and celiac are. The other stuff I have no idea.
I really appreciate being taken seriously; I cannot stress that enough. I'm glad he wants to be thorough. I'm not glad I finished my visit to find out it cost $800.
Eight hundred dollars! I was expecting $200, remember, and that is a lot for us at the moment. They let me pay half but I'm sure they will want the other half before my follow up which is tentatively scheduled for the first week of December. This doesn't even include my blood work! I have to go to a lab for that. This is just not doable for us, at all. It's impossible and I'm not exaggerating. We do not have the money, we don't even have a credit card we can put it on. Since graduating and finishing his internship DH has been looking for a better job but hasn't had any luck so far. Any friends or family I'd be comfortable asking for help aren't doing much better than we are.
Plus yesterday morning I found out getting my records to send to the endo specialist in Atlanta will cost $1 per page. I don't even want to know how many pages it is, and they can't tell me until it prints. Once it prints I have to pay for it even if I don't want everything no matter how much it costs. I already knew we couldn't pay for surgery, but they will keep your records for a year. I know other people who have done fundraisers to pay for it, so once we got an estimate I was going to look into that. But I can't get the records review and estimate without any records!
So yesterday was just a bad day. Can't do anything about my endo. Can't do anything about everything else. I just hope these injections I payed so much for do help and last for a while. I feel like saying if they don't I will cry, but that's a bit disingenuous since I'm crying already. Add in the Wave of Light tonight and I'm a total mess.
Today my
From Left to Write post is due for
The Goddess of Small Victories by Yannick Grannec. I've read about a forth of it so far and it's really good! If I could ever sleep and feel rested enough to pay attention to a book I'd have finished it. I've only read 10 books this year because of such problems and it's so disappointing. I don't know if I'll be up to writing a post on it today. They send you the books for free because you agree to post about them on time, and if you don't hold up your end of the deal you are less likely to get books (which is completely understandable). I hate feeling so unreliable.