I really don’t like to admit this. I mean I don’t like to admit it to myself or to anyone else. But, sheesh… my connective tissue disease/Lupus and friends/ whatever/is flaring like a real mother ducker.
What is a flare? Well, what isn’t it? Let’s see: It means the connective tissue in my body is all irritated and that my body is attacking its own autoimmune system. I guess it is visually like a cut on the skin that keeps opening up and bleeding and hurting over and over and then it starts spreading.
I have a lot of pain in all of my joints: fingers, wrists, elbows, neck, headache, knees and hips. I am ridiculously fatigued even though I sleep twelve hours a night. I also feel like I have a brain fog sometimes. I try to form an idea or remember the name of something and I can’t access it. Oh, and there’s the rash. It only strikes at night. Nothing helps it. NOTHING.
Some of this stuff is normal for me at this point. I can deal with it on a daily basis. But, when it gets so loud that I am slogging through the day waiting for the next hour to be over with and it starts attacking my digestive system, which it does, I get really irritated, and I don’t just mean my cells:)
I take an immunosuppressant, Plaquenil, (and yes I take immunoboosting infusions as well… it’s complicated) twice a day and it helps tremendously. And when I feel icky I can take a very low dose of prednisone (YUCK) and it usually shuts down the overactive, stupid cells.
However, the stupid cells have not gotten the message this time. I will see the rheumatologist’s PA this afternoon and she will want to discuss another drug, beyond Plaquenil. Most people in my situation take something other than Plaquenil. I have tried several times to take something that might help but failed. I always get a reaction and it usually involves my gastric system. I can’t tolerate anything that puts a load on my liver or pancreas. So, I will say no.
This leaves me with one option: A shot of prednisone in the fanny.
I don’t like it and I try to avoid it as much as possible but sometimes it is the lesser of many beasts.
So, I am sure that was fascinating for you:)
I guess the above situation and the fight I have been having with my insurance company, which I have won for now, over my infusion medication, is the point here though.
It irritates the hell out of me that I can’t just forget for a little while that I am chronically ill.
I try to forget.
I try really hard.
I don’t think it is mentally healthy to be stuck in your own mess all the time.
I have learned to take good care of myself. I work hard to keep the body I have as healthy as possible. I have come SO FAR. I just want to be granted a “get out of jail free” card in the game of Katie Monopoly.
I should know better. I am doing good to have a stay of execution. I am being greedy wanting more.
But isn’t that human nature? We all want more so we strive for it. Striving is what keeps us going. Or, at least that is what keeps me going. I am always reaching for the next thing. I don’t like being static.
This is a period of change in my life. My husband and I are really on our own. Our kids are launched and we have a new chapter in our lives ahead of us. I have a million things I want to do and be. But, the reality of my life and my health is that I can’t do a million things: I can only do a couple. And even those few things I can manage are reliant on my good and bad days.
I guess it is no worse or better for anyone else. I just take it really personally if my body doesn’t let me do something I want it to. I wonder though, what would it be like to simply accept my body, for reals, and be grateful to it for still working at all.
Does anyone else have advice on this? Well, I have gotten advice on this!
I just can’t seem to remember how to pull it off and I know it I can’t blame it on brain fog.
I will transition here to something I learned from my spiritual director. She asked me if it is possible to sit with G-d in the discomfort and simply ask, not for miracles or for a lifting or freeing from chronic discomfort, both physical and existencial, but ask for just the presence of someone/thing/being greater than myself to Be with me in my pain.
I think the point is that every day is new and every day brings me to another point in my jouney, just like everyone else. It just so happens that my journey includes physical difficulty. But that doesn’t stop me from living and reaching for the next goal. However, I should learn to scale back and not expect to run marathons like: work, home, choir practice, study, Friday night worship and to bed at 11:00. I would love that schedule! But, I will never be able to do that sort of thing again, and I need to remember that’s ok.
But, the days when I feel like I can barely crawl off the couch are the ones that irritate me the most. I have more of those than I admit to. Most of the time my motto is: Go and do and ignore whatever your body throws at you. But sometimes that is stupid and just wrong. I often feel like if I don’t fight it, if I let it put me to bed that day, it will end me. It will win.
This is where a little faith might be useful:) It is hard to trust anyone with my health mess and my little spiral down the toilet that occurs when I don’t feel well, even G-d.
But I know better. However, I think, for me, it is more realistic to sit with G-d in the discomfort and the anxiety it causes. It is difficult, but perhaps possible. I can even put it into a framework of faith that makes sense to me. As many of you know, I come from a mixed family, and after being a Christian minister, have found my way to Judaism, the faith of my father’s,(pun intended) later in life. I have been studying and I think I understand this:
The G-d I undersand and count on is in a covenantal relationship with me; We work together. That means I have to hold up my end of the deal and it means G-d does too, but we were never promised an easy trip on this planet. That is made pretty clear in the books and teachings of Judasim. (Oh, and by the way, the Jewish G-d is NOT one of judgement and retribution. This is an unfortunate and costly misunderstanding that has dogged Christian understanding of Judaism for over two thousand years.) No, we are guaranteed nothing of the sort. The only things we do know to be true is that G-d made us, G-d cares for us, and that we have a purpose in this life we live, no matter how it pans out.
Our purpose is to walk this earth with a purpose of the giving kind and pursue justice for others. In other words, we do not live for ourselves alone. If there is anything that can jolt me out of my own pain and my own miserable musings about my chronic crap, it is the realization that there is still Work to be done in this world and that as long as I am in it; it is my G-d given directive to do that Work, whenever and however much I can. And when I can’t, it is ok to sit and ask my G-d to sit with me.