It’s a question people with chronic health issues say and hear frequently. Sadly the response to this question is, more often than not, I don’t know. When a joint that had previously been relatively stable suddenly dislocates, ‘now what?’ Or when a new issue occurs and we have to ask our doctors ‘now what?’ It can be extremely frustrating for us and for our doctors.
Two weeks ago I had a fairly significant ‘now what’ that has, once again, become a game changer. If I had a dollar for every time I’ve heard ‘this is your new normal, get used to it’, I’d be debt free. Seriously. Like dysphagia and learning how to eat using the ‘gravity fall’ method just to get food to my stomach and malabsorption of the food once it gets there.
The malabsorption has led to me having to have an IV bag full of vitamins just to make up the difference. At first I had to go in for the IV every other week, then just every month. It hasn’t been as bad since we started juicing, apparently juicing fruits and vegetables breaks them down to a state where my intestines do a better job than just eating them straight up. You would be surprised how difficult it is to get that IV. Doctors just don’t believe it is anything useful. In my experience, it’s very useful. I wish I could still get them! The doctor I was seeing retired and his replacement thought vitamin therapy was a crock. Gee, thanks! Working with my new doctor to see if I can get them again.
I can’t help but wonder if the lack of those vitamin treatments led to recent events. I had what is called a ‘Thyroid Storm’. My thyroid is tested periodically because of my forced inactivity due to EDS. It was checked three months ago and was fine. Then one day it was no longer okay, the reason took a while to uncover.
“Excerpt from Mayo Clinic regarding Thyroid issues.
Thyroid storm.
The sudden and drastic increase in thyroid hormones can produce a number of effects, including fever, profuse sweating, vomiting, diarrhea, delirium, severe weakness, seizures, markedly irregular heartbeat, yellow skin and eyes (jaundice), severe low blood pressure, and coma. Thyroid storm requires immediate emergency care.”
The second worst migraine I’ve ever had was the hallmark of this storm. It was head between the knees painful. Because I have EDS, many issues had to be considered. It could have been an aneurysm, a stroke, or several other lovely things. Lucky for me it wasn’t, because going to the Emergency Room was useless. Once they heard the word ‘headache’ they stopped listening. I tried to explain what my other symptoms were and they just did not care. I couldn’t see out of my right eye, I couldn’t feel the right side of my face, I had a sudden increase in swallowing difficulty, I was running a fever, my blood pressure was low and the numbers close together. They ignored it all. They left me sitting there for nearly two hours before giving me a load of drugs and wheeling me out the door with instructions to David to get me home before I passed out from the drugs. I didn’t pass out, thank you. While the drugs did take the edge off the migraine pain, they did nothing to address the cause of the migraine or any of the other symptomatology.
Luckily for me, I have an awesome doctor. A call to his office and I was placed in the ‘on hold’ rotation so they could pop in and see me as they had time and order tests. He found the Thyroid problem. This is not your normal thyroid issue that requires doses of ‘synthroid’ to keep it stable. The medicine I know have to take makes ‘synthroid’ look like candy. I have to take it for the rest of my life or have another storm. When he caught the issue he immediately sent me up to the Infusion lab and wrote orders for me to be slowly re-hydrated via IV and the thyroid medication added in. I couldn’t believe the difference. Even David remarked on it when he came home from work. Apparently I wasn’t that far away from full cardiac arrest. Which is interesting, because my heart itself, is as healthy as can be.
The results of all the testing were good. No lasting heart damage, no brain damage. Which is good because I have enough brain damage already. I have a variant of Post Concussion Syndrome that causes Parkinson's like tremors in my arms, hands, legs, and feet. It’s part of the reason I wanted to learn to knit, having an activity that challenges my fine motor skills helps with the shaking. Though the shaking is still an issue with drawing and painting. Still no forward progress on why my blood pressure numbers are off, but he is working on it.
So new adaptations are happening, as they so often do with chronic illness. Each new ‘now what?’ comes with it’s own luggage of things that need to be done, avoided, improved, removed, and otherwise incorporated into daily life. Each is it’s own new battle, added to list of battles in the never ending war of what is our life. Which sounds a bit negative, said that way, but it is true. Chronic illness is not a single battle, it is a war. A war fought for our lives. I’m proud to be a warrior, because the other option is giving up. I’m not ready to give up yet. Maybe someday there will come a ‘now what?’ that changes that, I don’t know. I don’t think anyone really can know, until it happens. For now, I’m not going to sit in a corner and mope, I’m going to keep doing things I like and finding ways to make it work with my failing body.
It’s an interesting experience, being healthy while falling apart. Most people fall apart because of bad health or health issues. As usual, I’m backwards. I’m falling apart and it causes a lot of my problems. It is a trip, sometimes, trying to figure things out, to connect dots that don’t even remotely look like they should be connected. Worse yet, is the feeling you get when something like this happens. I always feel so stupid, like I’m wasting everyone’s time and using up resources that could be better used for someone else. I find myself frequently apologising to doctors, nurses, techs, and others that have to push me through machines or inject me with something. I don’t like feeling that way, but I don’t seem to be able to not feel that way. Just part of it, I suppose.
Anyway, I’ve a few projects I’ve been slowly working on. Hoping to be able to share one or two of those on here in the near future. As always, please comment and share your own experiences.
Thanks for reading!
TH
