This has been another crazy kind of week! Here's my disclaimer: I'm on an antibiotic that is causing almost a high feeling. I feel like I'm on a pain killer rather than an antibiotic. I got about one whole hour of sleep last night because of it, so forgive me if I make no sense.
The Prednisone has blown Emily up to (what I'm hoping!) is maximum puffing capacity. In short, I don't think that kid can retain any more water or blow up any more than she already has. She looks so pregnant. :( She hates it, but she knows that the meds are helping. In fact tonight she told me "Mom, I can't wait for my next infusions. I really think that I will be able to run again soon, after either the next one or maybe the one after." YAY!!! Ok, so she's not yet ready for marathons, but she's walking, and she made it to school for a whole week! Those 2 points are huge! She also pointed out that her legs aren't as tired now, but her arms and shoulders still get tired. Well, her knee tends to "fall asleep", but compared to the myositis that's a small price to pay. All in all, she's getting better slowly but surely. The rash is still there, however, and when there's active rash there's active disease.
I hadn't been to church in a while. Sundays are my Saturdays, or at least were until recently when they became my Fridays. Sunday is the day that I just can't get out of bed, so we haven't been to church on Sunday for a while. Thursday nights are church for us, but also Brownie night and Emily really enjoys Brownies. This week there was no Brownie meeting so we went to church. I'm so glad we did! Friday I had my yearly thyroid check. I usually don't worry about these as everything has always been good, but when I was looking at my lab prescription I noticed that they had also circled "Hyperlipidemia" as a diagnosis. This had me laughing at the irony; I pour hours and hours each week into medical issues revolving around my daughter, and yet I don't see that I have something going on until a year goes by??? Oy! I went into the office understandably expecting to get "spoken to" about my diet. I love my greens, stay away from fast food and try to stay decently healthy but yes, I am a junk food addict. Give me some chocolate & a Mt. Dew & I'm happy! (Doesn't take much. It's the little things!) Instead, the doctor comes in and says "I need to talk to you about your husband. I've been meaning to call him." Ok, wasn't expecting that. It's a good thing that I went then. Not long ago he had a bone scan of the throat since they had found some cancerous cells on his thyroid when they removed it. He was at their office not too long ago, but the results were inconclusive. He was told to call back, which he did, but they fail at returning phone calls. Then Emily went into the hospital & it got put on the back burner. Anyway, she said that his bone scan showed a "bit of uptake in the throat". I should have asked her to clarify, but I tend to forget to ask important questions when I'm shocked. She strongly recommends that he does radiation. In his case it is just a pill; it's basically the same radioactive iodine pill that they give to people when they undergo the thyroid uptake test. First he has to go off of the one medication that regulates his thyroid hormones, and stay off of it for probably 4-8 weeks. The fun in this includes: being freezing cold when everyone else is fine, horrible back pain, inability to sleep, mood swings, extreme fatigue, total body swelling/ arthritis feeling. Then he takes the pill, stays 3-5 days in the hospital, wait a week, then go for a total body scan to make sure there's no trace. Of course, in this process we will actually NEED to have calls returned to move on to each step, and since they are very, very bad at returning phone calls it will probably take longer than it should. I got a bazillion prescriptions for him, for medicine & testing both. For my efforts I was rewarded with a "you're doing great!", a prescription for my normal thyroid med, a warning that I won't be on the lowest dose forever, and the antibiotic for my toe :) I know I need to suck it up and see a podiatrist, but I really don't have the time, I would rather perform my own surgery when possible, & I didn't want to waste any more money on medical bills. I'm sure I'll still have to go. I suspect I have a mile of toe nail in there that I can't get to no matter how deep I dig, but at least it's not continuously oozing all day long on the antibiotic. :) (It's the little things!) Not to mention, I know I'm getting sick. For once, I hope it's a bacterial infection and not just a cold. Wouldn't that be lovely if I could avoid being sick because of the antibiotic? I worry a bit because I haven't been on this one before, and so far the only antibiotic family that doesn't cause me hives/ rash is the Myacin family.
Last but not least, we were awarded Social Security for Emily! Unfortunately, they decided that she was only eligible for 2 months, so we got it and lost it in the same week. That means that I can't get her on the medical that I need her on. Our amount owed for one IV infusion from the old rheumy is $300. She had 3 of those before she was hospitalized for 6 days and in the hospital she had 2 drugs that I know are extremely expensive. I've been told that the IVIg can be as much as $4,000. I'm running out of time trying to figure out what the heck to do. If this keeps up we will not have one extra cent for anything aside from groceries ever again. Praise the Lord, for I learned how to "Let go, Let God" a long time ago. Simply put, for what I cannot handle, or deal with, or what worries me too much I give to God to deal with. That is one of my secrets to being happy. I try to do what I can, but I have faith that one way or another it will work out. I just have to figure out what needs to be done, and how to do it.
Anyway, I'm rambling. My mind is crazy with this medicine right now. (I haven't been this hyper in a long time!) Keep us in your prayers, please!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Saturday, November 13, 2010
A lot can happen in a week!
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Bless her little heart! And you too. It's a lot to have on your plate. You will be in my prayers as I know the toll this disease takes. I knew the weather was switching when my rynauds kicked in and I had purple/grey/white fingers. Oy. Hugs. TammyReplyDelete