Over the last 48ish hours since my last blog post, life and illness have given me good reason to be a little (a lot) freaked out and frustrated. Not only because we’ve never seen such a rapid increase in symptoms but because for the most part, it was completely unexplained and we’re left wondering why, how, what and most importantly when is it going to happen again?
Generally when we as a whole talk about chronic illness the CHRONIC part kind of takes on two meanings. First it’s describing a persistent or reoccurring illness for the foreseeable future. That’s pretty much a gimme in our world. Second though, is from what I’ve found out usually that we assume that symptoms are either going to stay relatively the same or even improve some with the right treatments over the long term, maybe if we’re unlucky they will progress slowly over many years if we have a severe case or our doctors aren’t on top of it (or they’ll blame us for a bad lifestyle…..yea my gummy bear addiction is to blame, y’all).
With many autoimmune and/or connective tissue diseases (like lupus, rheumatoid arthritis, crohn’s disease and many more) there are times when symptoms lighten up and if your lucky you might even enter remission *fingers crossed for all of us* and there are times where disease flares up and symptoms get worse and sometimes the disease progresses and does further damage. While these flare ups can come on quite strong, it doesn’t seem like it’s expected that they do and WHEN THEY DO, it’s expected that labs and tests are able to come back with a lot of impressive information as to why, how and what is going on.
The shitty thing is, sometimes they don’t know what the fuck is going on.
I still have days where I have trouble accepting that my hands and other parts might hurt every day for the rest of my life, or that I’ll never be running a marathon or that I’ll never be able to enjoy food the same way. It’s a struggle already, but I’m managing I think. I’m not ready to add to the mix that there will be random days where trips to emergency for banana bags and a host of mystery tests are needed because my face goes numb, my right side of my head feels like it’s dripping out of my ear, my joints all down my right side are burning and stiff and can’t bare weight and I can’t even keep water down. The doctors and I all know that low blood pressure and Princess having the sniffles aren’t the cause of it all, but we really also don’t know anything else apparently.
It could be some freak one time craziness that my body decided to play around with, it’s a jerk, we know that. Like when my middle finger blew up to the size of a bratwurst and made Mr. Mango force me into the ER (which started this whole thing…. something he points out quite often actually, if it weren’t for him who the fuck knows when I would have finally sought out help). That never happened again, but it just so happened that it is assumed to be connected to my mixed connective tissue disorders.
Or it could be some weird new severe way to tie together some seemingly unrelated conditions and it’s going to come and go as it pleases…. I’ve never had nerve (the numb face, and possibly the feeling like being shot through my right temple) issues, joint pain and digestive trouble all intensify and act up at the same time like that before. I think it’s safe to assume it’s all a little too much to consider a coincidence. This is what really scares me. I guess only time will tell, and hopefully some of the lab tests that they sent away for processing.
For now, they still don’t know what the fuck happened/ is happening. Some shit relieved itself, like I can handle drinking water….slowly now. My knee and foot are back to normal apart from my foot seizing up and cramping randomly only when I lay down. My face feels only slightly numb, like how it would feel after slight frostbite and medication has finally taken the edge off the headache. My right abdomen is still extremely swollen and tender as well as my SI area and pelvis feels bruised and broken and the nerves are on fire, no help from the medication there. As far as I can tell, things got bad fast and are taking their sweet ass time to get better.
It’d be smart to stay in hospital for observation, but realistically there’s no way that would work with our home life or my sanity. With my scope and biopsies 2 weeks away and those tests needing to be as accurate as possible, its in everyone’s best interest to have me eating and drinking as normal as possible and that’s more likely to happen at home than in a hospital bed. I did get discharge papers (despite some staff fighting against it apparently…) but am under some pretty strict instructions as to my own care, or rather lack of taking care of anyone or anything else.
All I can hope for is that some time soon I get some answers. It’s getting too messed up and too severe at times to not know what’s going on or how we can manage through it. Mr. Mango’s planning Disney Land trips, the kids are telling their teachers they need extra time to draw Mommy pictures and Little Dude has been cuddling every spare second he has. I’m not the only scared one, we’re all trying to cope in our own ways. Mine? Now that I’m kind of able to be upright and caffeinated, it’s research mode. While I don’t expect to run into answers, keeping busy looking for them tends to help quell all the uneasy thoughts that come along with not knowing what’s going on.
On a completely unrelated topic. Kara, I didn’t get a chance to say anything yesterday but amidst everything going on I did think of you and MC and I hope everything went fantastic and recovery is already taking place. Lots of positive juju and vibes sent your way. xoxo