As many of you know, it’s believed that I have Lupus, though my diagnosis isn’t officially on paper yet. I go to see the doctor that will confirm this in July. This means that I am chronically sick. I am never fully healthy and I don’t ever “get better” which sucks. One of the most common terms tied to chronic illness is being a “Spoonie” this is often for those of us who have a hard time functioning on a daily basis. (Hang with me for those who know me I’m sorry if I mess this up you’ll read why I might be writing funny).
So the idea is that everyone has energy, and normal people have an unlimited amount. Those of us who are sick, are limited. This is measured in “spoons” kind of like teaspoons. Those of us who are sick, when we run out, we’re out. We only get so many a day and each activity uses up some of our spoons. You can read more about it here.
So recently things took a large turn for me, on the 10th of March I ended up in the ER with some really severe pain. They treated me with steroids and the norm, did blood tests and everything came up the way it normally does. Not normal for a normal person, but semi normal for me. I went home, took the meds, rested, and immediately started to improve. Then it came time to come off the medication and things went to hell in a hand basket.
About a week later I came off the prednisone steroid med, and as soon as that happened I started to swell up, badly, and then my joints and muscles became so stiff that I could hardly function, I called my doctors office who could not fit me in, they told me to go back to the ER. When I returned they immediately gave me more steroids as well as some other medications to fix all the issues. They began to determine that I was in a flare. The next morning I saw my doctor who decided to continue to let me flare on and off until July when I see the rhuematologist. I’m thinking of switching doctors because he believes that treating me is a bad idea, instead he wants to wait until the problems worsen, and then try to fix them.
After all this on the 24th, I had a seizure, the first time I’ve had one where my body twitched. I ended up at the hospital again and they determined it was a simple partial seizure, they gave me ativan along with some other medication including more steroids because I was still swelling, and antibiotics because my bloodstream was showing antibodies as well as my white cell count being high. The next morning I saw a doctor in my doctors office, he is getting me a wheel chair, since I have now lost my ability to walk, the vertigo is too bad on me, at the current moment. He’s sending me to a neurologist to check me out with an EEG as soon as possible.
Since then I have had a petit mal seizure and a grand mal seizure, my very first one of those. I still cannot walk and after the grand mal seizure I was paralyzed for a good 10 minutes. Every seizure has been preceeded by some aura, from me smelling onions, to seeing our cat as shiny, to talking about random ducks and ladies that aren’t there.Everything about this has been scary as hell, but this is where I am today. I will continue to fight. I have no idea what my future brings or how many of you wanted to know any of this, I just felt like letting it out and a facebook post wouldn’t do it. I’ve let some of you who are closest to me know via private message what has been going on, and if you want to know more please feel free to ask me.
For those that are wondering what we think is happening here is your answer. Lupus as some of you may know, attacks the healthy cells and tissues in my body much like your immune system would attack a cold. It seems as though it’s beginning to attack my brain on top of the other organs it’s been attacking. This would explain why i am beginning to have seizures. We don’t really know anything for sure right now and right now I’m just in limbo. I’ve been so groggy
Zane has been amazing, he’s been taking care of everything, the house, bills, cooking, cleaning, Alex. Everything. I could not ask for a better partner in this life, he’s incredibly supportive and even though I know he’s just as scared as me, he’s there, 100%, exhausted, and fighting right by my side.
These boys are my strength. Happy Easter to you all.