Been a hard holiday week. Did too much. Stressed too much. Paying for it now. Nothing horrible (relax mom) just… crap.
I got my pneumonia shot on Saturday and when the pharmacist told me it is reported to hurt a little more than the flu shot (which frankly didn’t seem to hurt at all) I figured, ah… okay. This one might actually get sore for a bit.
It felt like someone got angry with me and beat the crap out of my arm with a ball bat. It got bad enough I got up at midnight and took over the counter pain relievers to take the edge off. It’s Tuesday and I’m starting to not feel it any more.
Yesterday evening I started my Humira. I’m still convinced it is just cheaper to let the freaking RA have its way. $2100 a month for this one… $1800 a month for the last one… and what happens when this one doesn’t work? It just gets worse and worse. Geeze.
I don’t know if it was just everything catching up to me, or if it was the Humira, but I started having the weirdest dreams last night… I was freezing… and itchy. Not a pleasant night’s sleep.
And wake up this morning with sore throat and runny nose. Great. Oh boy.
sigh… ah well. it is what it is. I’m hoping that the Humira works. If it doesn’t I’m scared of whatever is next.
Got up early this morning, let the dog out (how does she know it is 4 am?) and started thinking again about buying myself a domain for this blog. I’m pretty sure it won’t really make much of a difference… The same people who read it now will read it then and that’s about all… but it is worth a shot to try to reach out to more people.
Today is pay day… I will have the funds to buy the domain…. I’ve been seriously toying with doing it for several months. Now that I have books in progress (one on RA and one on Epilepsy so far) maybe it is time for a little vanity (a vanity page is what they call it when you try to put a brand name on yourself.
Maybe it is really time to take myself seriously…
What do you think?
I’m trying to decide if the people on the discussion lists that I frequent will drum be out or not for this blog post. I’m pretty sure that most people, either the ones I know in person or the ones … Continue reading
This week, earlier, was my Rheumy appointment. It was not something I was looking forward to. I knew my toes (turns out my ankels too) were still pissed off. I was right. There is something to be said for being … Continue reading
I’ve decided that I hate Raynauds even more than it’s achey painfully cousin RA. Why? My feet are cold. All the damn time. Not really cold to the touch (although that too pretty often) but they are freezing. They are so cold it aches. My fingers ache clean up past my wrists.
I have fallen in love with my daughter’s heating pad for her back. Last night I curled up under a quilt, a warm heavy fuzzy blanket and a comforter and I could not get my toes (clear up to the middle of my feet…. toes) warm no matter what I did. I put that heavenly heating pad on top of the heavy blanket and in 20 min my feet were finally warm.
This morning, they were freezing again… hot bath… a soak in a HOT bath tub… and they were warm. The day warmed up enough that heavy socks and wooly crocks are keeping my tootsies warm… but I know it will end.
It’s depressing to know that this is how it is going to be. I can’t ‘fix’ it I can just deal with it. I’ve given up trying to put on a front, when my hands are cold, I wear my cut off finger glovies and I make the best of how they look. I wear warm socks even in my Vebrams and I deal. I hate it, but it is what it is.
I’ve been reading some posts on my RA discussion groups 0n facebook about people trying to decide if they should get a rheumatologist or stick with ‘just’ their regular doctor. I know that it is a personal decision coupled with the decision your insurance company tends to… um… encourage you to do.
I was lucky. My PCP encouraged me to go to a good Rheumy. I have a hunch, now, that she just really didn’t want to deal with me and the obvious problems that putting off going to the doctor about my symptoms for SO long was causing. But I know that it was also the best thing she could do for me. Dr Holly suggested a couple doctors, one that they tend to try to send people to and another one if the suggested one didn’t suit… I called Dr Booth and I’m so glad I did.
Having a Rheumy on your team gives you someone who really understands your condition, they understand what your body is going through and they have the background to tell you that this doesn’t work or that might help or don’t listen to the people who preach something else.
She talks to me at every appointment about what she sees in me, what I’ve been going through, what I’ve been up to, what the meds are doing to my body. She tells me about the up and coming stuff in the ‘industry’ and what new marvelous drugs are being tested. I don’t qualify for a clinical trial. I don’t have enough joints involved. But it is good to have that information.
The rheumy has the inside scoop on support groups and on exercises that you should maybe avoid given your current condition.
and they can answer all of the questions that you run into… questions that your PCP might know, or might have to research and get back to you on…
things like…. methotrexate if taken the way they used to prescribe it (a bolus dose rather than ramping up) you get horrible diarrhea … explosively… and that isn’t great and sometimes it is better to take things prudently rather than the way it has always been.
things like, be gentle with yourself, you will hurt, you will be tired, you will have horrible days and you will have less horrible days. do what you have to do to get life done. Slow down and love your good days, adapt tools when you can’t love your days, and don’t be afraid to ask for help.
So… if you have the choice… I would say… get a rheumy, even if only for a while. They are vastly knowledgeable about what your body is going through and can be one of your best tools in the world.