So it’s been a while since I’ve posted. That’s because I’ve been busy learning how to deal with the dense fog that bathes my head most of the day. Coffee doesn’t touch it. 3 cups of coffee don’t touch it. Exercise makes it worse the next few days. Opposite of everything I know to be true-a tiredness that refuses to lift and holds your body down like a great big sandbag. But I’m still exercising because that still fixes other things-some of which are broken. Which is what this is about.
Where do I begin? Top down is good.
1. The head:
hearing-bad! My kids have a game where a couple of them stand somewhere in the room and say “Mum” starting very softly, gradually getting louder just to see when I will turn around. Usually I don’t and they break into hysterical giggles.
balance-massive room spinning at night. Wakes me up once or several times per night. Frightening. Have to close my eyes till it passes. This has actually improved on steroids.
ringing in the ears-began one day after a hard run. Like a powerful whistling wind outside the window. After 3 weeks so loud and annoying I didn’t think I’d survive it, they restarted the steroids. It took 6 months to start improving-the sound got farther and farther away till I could actually handle it. It’s still there a year later but I don’t pay much attention to it anymore.
vision-can’t read a thing in the morning with my glasses on. And yes, they are the strongest reading prescription I can have. Gets better as the day goes on and like everything else, it makes no sense to the doctors. (Must have something to do with the orbital tumors that started this little journey.)
2. The neck:
Well, embarrassingly, it moves when I don’t want it to. Specifically, it turns my head to the right. This is a problem when I’m driving or watching a movie or listening to a lecture. In the car and movies I lean against the headrest and that does the job. In a lecture I have to lean my chin in my hand because if I try to hold my head straight, it does the old lady “bobbling thing”, and I’m really just too young to allow that to happen. But it’s really an embarrassing issue at the hair salon or at the eye doctor when they yell at you to just hold your head still! Not until all these other problems did I realize that this has a name-cervical dystonia, and is treated with quarterly injections of Botox into your neck and back muscles which actually helps a lot but doesn’t cure the problem. The problem is in the brain. The brain is broken, signaling the nerves to your neck to contract constantly. So the neck muscles become extra large on the opposite side trying to forever bring your head back into position.
3. The back:
A trigger point that doesn’t hurt if I’m resting. But soon as I start moving around, ouch! Like a knife, every day-just got used to it being there.
4. The heart:
For a year they couldn’t figure out why it had fluid around it. Could it have been that the tests were done AFTER I was already on steroids for 4 months?! Why, of course! But they didn’t admit to that till 5 months off steroids, my heart had little patches of sarcoid on the PET scan. And the fluid is still there 2 years later. And it’s so hard to run even though I’ve been a runner for 30 years! Fast forward to after treatment again with steroids and now chemo pills-there’s thickening in one of the valves. When I google that, it says it’s a sign of early heart failure. And now one of the chambers is dilated as well. But the cardiologist tells me it’s better to focus on what’s normal in my heart. No, they can’t tell me what it means or what will happen or whether things are declining. Or do I have to worry about the fact that most cardiac sarcoid is diagnosed at autopsy because of otherwise unexplained sudden death? But now they are so confident they can diagnose cardiac sarcoidosis early, that they’re also not as aggressive in treating it. So whereas before, as soon as the diagnosis of cardiac sarcoidosis was made, a defibrillator would be implanted, as a kind of insurance policy, now they think that certain people are diagnosed early enough that a defibrillator is overkill. But will my disease eventually need one? I don’t know and they don’t either. Do the new problems in the valve mean that it’s not as mild as they thought? I have no idea because they avoid communicating bad news. OK lets go south.
5. The digestive system-lets just say it needs some combination of 5 medications to work and prevent that awful 5 hour vomiting session I had last summer. It’s a nervous thing again-sarcoid in the nerves, that is, that slows the bowels too much. This is one of the things that running does help. And if I don’t run, I don’t go!
6. Further south? A little too private to talk about, but things aren’t quite working there either. Trust me, big problems. Let’s leave it at that and you can use your imagination.
7. Finally, the feet. Lumps removed. Lumps that grew to the size of ping pong balls between my 2nd and 3rd toes on each foot. Lumps gone, toe pain still there. It’s neuropathy they say-small fiber neuropathy, affects the part of the nervous system that we don’t think about, like digestion and heart rate. When it malfunctions, there is pain, organ dysfunction, etc. Probably why my heart rate in the 100’s most of the day and why my Fitbit registers a state of “fat burn” for 10 hours! Don’t be jealous that I stay skinny-I wish I could eat more frequently than every 8 hours but I feel so full all the time that I’m not hungry!
Well, that about says it all-my broken body. Weirdest thing is-I look great! “How can I be sick?”, everyone asks! How do I possibly explain to them what I just wrote about?! Hence,this blog!
Thanks for reading and please check out my Facebook page-Humor in Chronic Illness. Also check out teespring.com/sarcoidosis-mom for fun tee shirts!