I am calling my Rheumy back tomorrow. I didn't want to bother her, again, and when everything finally settled down, except the two most painful joints ever, I just didn't want to call and whine again. But my daughter's pediatrician had some words for me today....."if we doctors wanted 9-5 jobs that never caused us any extra thought, we wouldn't have stayed in school while our friends were out having lives." Today is my doctor's day off, I will call tomorrow.
I've been upping my prednisone, to keep the inflammation down, but it isn't working. I'm taking NSAIDS, even though I'm not supposed to, because they are the only things that come close to giving me some relief. The pain in my TMJ (the joint where your jaw attaches to your skull) is unrelenting, it extends into my ears, and feels as though I have ice picks jammed into either side of my head. When I move my jaw, I get pain. The more I move my jaw, the more pain happens and the longer it lasts. Chewing, talking, smiling, laughing, swallowing, all those things you don't even think about until suddenly it hurts you. I had to have my left TMJ repaired in 1998 due to a fall. It was miserable until they fixed it. I had been given muscle relaxers, and still had some. So for the last few days I've taken those, yes 14 year old medicine, it is either inert or omnipotent, but it did help quite a bit at night, so that I could sleep. Even when taking Lunesta, the pain would wake me up, and keep me up. But again, not wanting to bother my doctor after already calling her and getting yet another plan of action that wasn't working, I just soldiered on.
That is the irritating and annoying flare. This is the concerning one: The base of my skull. Another area that RA can do some damage is in the cervical spine, specifically the C1 and C2 vertebrae. One of the first signs that something is wrong is pain. Like a headache you've never had before, one that leaves you in tears. It feels like a giant spear is bashing your brain, like your head is on a pike. "Vlad the Impaler" was all I could think of this weekend. It seemed to get better over the weekend, but then returned yesterday with a vengeance. I still have mostly normal range of motion, but it is painful when I move my head from side to side. Then today I kept getting this tingly, almost pins and needles like feeling in my arms and hands, and then every so often my hands would go numb.
So what I have to deal with daily is pain. Some days I have to add in diminished mobility and difficulty in doing certain tasks, but always the pain. Sadly, you get so used to it, that after a while you forget what it is like to not be in pain. It becomes just part of your life and you take the pills they give you to keep it manageable and you do the best you can to be as normal as you can for your kids and your spouse and the poor souls that happen to talk to you from time to time. These two new places where I am having flares are making life more difficult right now. The pain is new to me, so it is harder to ignore. It brings me to tears more than I want to admit. But I know that soon enough, I will be used to it, and it will become another part of my life that I deal with.
You know what? I'm okay. This isn't terminal. I'm not enduring rounds and rounds of chemo and/or radiation. I know that I will most likely wake up tomorrow, and for thousands of tomorrows after that. God has a plan for me, and for my family. We don't know what that plan is, but somehow, this is part of it. I'm just forever grateful that it is happening to me, and not my children. Right now the baby is just getting over a week of being pukey sick, and his big sister now has strep throat, which I will most likely also get, because all the medicines I am on to try and control this disease suppress my immune system. Oh well, what is a sore throat thrown into it all?
So that has been the last week, lots and lots of pain, throw in the end of basketball season and a few all nighters with the baby and woo hoo, just like every week before it. We are rolling ahead into March, the birthday month. All three kids, one month, with high expectations, I'm sure. We call it Christmas II. Funny how the kids never make a big deal about OUR birthdays, which are 5 days apart in October. Hmmmmmm, I wonder why that is?
Tomorrow will be a better day, starting with the call to the doctor "ummm, I don't mean to be a pest, but, well, we still haven't whacked that mole......."