Today I'm feeling a bit on the sad side. Just tired of the every day dealings of Polymyositis, pain, medications, etc.
Earlier this week I went to get a medication refilled only to have the pharmacy tell me the insurance wouldn't pay for it...it's no longer under formulary. I've been on this med for three years now...couldn't the insurance have given us notice? So, I went a week without it trying to get that all straightened out. A week of withdrawal from it as well. Not fun.
I've also decided to put the house up for sale. I'm afraid I'll lose some money on it b/c of the updates (painting/etc) it needs, but I just can't maintain things in it with my limitations. And, living so far from support makes it difficult when crisis happens I(i.e. falls). So, I'll be looking at townhouses and condos closer to work and friends. Financially it will be better, too.
Financially is another things. These medical bills have been such a big hit on me, I'm wiped out...I have nothing left in savings. We barely get by month to month. In fact, I don't know how we do it. On paper, we shouldn't be able to make it...some how we do. I stress about it each month though...and every time another medical bill comes in the mail.
M is upset about moving. She's worried about leaving friends, starting a new school, etc. All the normal stuff for her to be worried about. But, she'll be okay.
I'm constantly worried about A. He's done nothing to start college in the fall. He missed his deadlines for applications. Of course, this is all my fault. He has no place to live. He's saved no money. Despite having free rent all summer (and before that)...no bills, etc. He's blown everything he's earned. Again, his situation, though, is my fault somehow. He takes no responsibility for himself. I worry so much about him, but I just can't have him live back at home.
I still can't find a doctor to manage my pain medications. My rheumy has made several referrals, but we never get calls back. I don't know what else to do about the pain issue. I'm tired of pain every day. Day in and day out. This isn't a way to live.
2 comments:
Hi Tracey,
I saw you post last month about getting headaches from your IVIG.
I take IVIG too, and I also had terrible headaches, plus vomiting, nausea, sensitivity to light, sensitivity to movement, chills.
There were 4 things that together worked for me to really reduce the headaches a lot.
(1) Drinking ginger ale and drinking water while I get the infusions. Keeping "well hydrated" as they say.
(2) "Pre-meds." Tylenol and Benadryl. I take one of each starting the night before, three times a day, continuing until 2 days after the IVIG.
That might be something to ask your doctor about.
(3) I'd developed high blood pressure from the IVIG. Once I got high blood pressure meds, no more vomiting, no more chills.
(4) The infusion rate was too high. Where I go, the usual maximum rate is 240. By trial and error we found that if we maxed out at 200 on day 1, and 180 on day 2 I had only mild headaches, and mild flu-like symptoms.
- Keith
I was wondering if the infusion rate was to high for me. It is faster now than it was when I first started getting the IVIg...so, I really think that is the culprit.
I actually have drops in my blood pressure!
Post a Comment