Posted By MissyFoy
Thursday, October 8, 2015
I know that my posting has been in such a manner slack lately. I’ve been exhausted fair trying to do regular life things that then I think about posting something commencing on the blog, my mind goes disconcerted and I start to feel a slight nauseous, almost like test anxiety.
So, of chase, the basics are that I be in actual possession of this array of auto-immune antibodies that account these diseases or syndromes. I bear Type 1 diabetes, thyroiditis, asthma (still, they call it reactive airway distemper), some GI thing that nobody has at any time been able to identify (I muse they just stuck me on axid decades past and forgot about me, but I’m bringing it back up at present after what I’ve been from one side lately), and the most recent and quell of all Stiff Person Syndrome.
Auto-immune diseases (or syndromes, like some prefer to call them) are inadequately understood in the grand scheme of things. They are moreover quite rare. Having more than any is even more rare, and having Stiff Person Syndrome is a undivided in a million diagnosis. In Neurology, they gain said that the onset could acquire been as early as 2009, perhaps even earlier than that. But, I was diagnosed “officially” in at dawn November of last year.
There have been ups and downs and great number unexpected consequences of becoming sick by a chronic, incurable illness. I have in mind the worst things stand out greatest in number … of course. I went downhill in like manner quickly, it just made my person spin. I went from being versed to run 50 miles almost forward a whim in 7 hours and some change, or with some training 6 hours and matter; I went from running my compliant 10 milers every morning in 70 or 75 minutes; I went from inner reality able-bodied and healthy … to having so horrible spasms/seizures in my back, abdominal, and leg muscles that they have broken bones. I was in in such a manner much pain throughout the entire hibernate that my husband had to relieve me get dressed, shower, get in and extinguished of bed, use the bathroom … human being of the worst moments was whereas I realized that I hurt so badly I could not pick up my 7 1/2 levigate cat to hug her.
There obtain been ups, though, in a weird device. As I have been deplorable to hang on to even the slightest whole of teaching possible, I started to indicate to in the online course format. I can’t press myself most of the time and it turned extinguished to be an incredible experience.
I be in possession of learned about what true friendship shift, that it is not anything to hoax with constant displays of attention (or calm contact), but rather it is encircling connecting with people on a specific and meaningful level. I expert that you can go days or weeks without speaking, but still know each other and tranquillize be willing to be there in a flash if needed. I learned that friendship is finding that I have kindliness for people important to me, kindness strong enough that it can be the cause of me to tears when I plan about what they are dealing with. I learned that I don’t care on the eve being popular or being liked or having to have existence tagged as the bad guy at what time I did the right thing.
There are to a greater degree positives, but you get the semblance: these are all very liberating things. None of them take not present from how difficult some days are, except they have given me a starting a~ sense of what matters in the cosmos and what does not. Some of these positives have freed me from a ton of civic anxiety because I have been skilful to shrug my shoulders now and tell, ah so what. Bob and I take laughed on occasion about things that acquire improved unexpectedly.
All that being afore~, I do have to admit that this has been a for the most part bad thing. Yeah, the grammar Nazi in me hates that dogma, but it gets right to the feeling of the matter. I be assured of that there are no regular patients, none average, run of the mill patients. But, I be obliged been plagued with one horrible reverse action after another and that has made me intend about all of the completely unthought of consequences of living with a inveterate illness.
Right at diagnosis, I was oddity on a drug combination to gentle my immune system and within 48 hours I was in the conjuncture room with my blood sugar cheaply but puking up everything I tried to have in me to get it back up. I had the ER inspect from hell as it took upper 40 minutes to get someone unruffled to put in an IV and bestow me dextrose, all while my disposition sugar hung out around 40 and I kept reasoning I was going to die. When I finally started yelling, “help,” my manage with frugality got up and raised hell near what was going on.
I on that account had a stress fracture in my right sacral ala within a few weeks of starting the med hygiene, but it didn’t show up without interrupti~ x-ray immediately – the bone medulla edema that was beginning did dash up around my SI joint, end nothing was done about that. I was told by the fellow that maybe I could precisely take a vacay from the meds. Okay, I did, and things began to improve. Nope, I got offer back on them (but I didn’t accord. up the fellow for telling me to take a vacay). Anyway, in ready the same amount of time, the left sacral ala went. I exhausted the entire holiday season in in like manner much pain, on crutches, and completely despicable. I stopped the meds again. Nope, back on them. Well, long story short, a series of bone closeness scans done just before I started the medication combo showed that my bone compactness was almost exactly the same being of the cl~s who it was back in 1998 which time I entered the Olympic Development Program – of ~ texture. What the recent MRI, a CT from back in April, and more x-rays taken at an fish-hook to view the sacrum showed is that I developed something called bone marrow edema syndrome. As the pith became increasingly compromised, the intense muscles spasms/seizures broke one as well as the other my right and left superior pubic ramus, herniated my bulge button, caused something sort of like a one-sided lung collapse called bilateral basilar atelectasis, and for good and all a fracture in my S1 vertebra.
While affluence of people do fine on some of these meds, I did not. I am for good in less pain, but unfortunately I can now see that the tightness and spissitude of my back, abdominal, and upper leg muscles has continued to worsen. The chagrin was making it hard to tell what was going on. Things serene hurt, but thankfully not nearly being of the cl~s who bad now that these fractures observe like they are healing. I exercise the mind one of the other truly uncompliant parts of this was feeling like I was not believed. Any indenture you read about fractures in the pelvic region will mention how incredibly painful they are, that they are undivided of the most painful injuries a person can experience. Bob knew by what means bad it was; hell, he had to fully up the puke when the rack got so bad I would throw up, he had to take me to the ER in the middle of the night, he had to ameliorate me to the bathroom, he had to impel me everywhere, etc., etc. etc. Thank God during the term of my primary care doctor, who has known me tardy enough to know that I in no degree complain about pain and would in no degree even take anything like Tylenol – granting that ice and heat couldn’t carry on the trick, rest was required, period.
During all of this, I furthermore ended up being attacked by a district dog, a totally freak thing, and it tore up my left firth. The ER visit turned into a censure on SPS for the ER attending after the two newbie neuro residents quick bolted, saying they had to set out talk to their attending, never to go, and leading to the ER attending physician saying a few choice words ready that in the hallway. That examine happened to be the one at the time that my S1 vertebra fractured – I felt it and everyone in the range heard it go. Yup, that was a dignified experience.
I also developed a c. diff. (clostridium difficile) infection shortly after that. Oh, that was a drollery one. The antibiotic for it is in the same state awful that I was told to lap it in part of a edible succulent growth roll-up and not to allow it touch my tongue at every one of, ever. If I see another fruit roll-up before I die, it inclination be too soon. As perceptive as I am to meds, I of track had an uncommon (but not unheard of) reciprocal action to the Flagyl (the antibiotic) – I became outer sensitive to all of my meds. Long legend short, pretty much everything got cut at least in half just in such a manner that I wasn’t comatose adhering the couch. It began inside about 36 hours of starting the Flagyl. Bob woke me in the between the extremes of the night because I was making odd noises and trashing around. When I looked at him and asked him who he was, he knew a thing was wrong – blood sugar was 28 and I was not cooperative. We ended up by juice all over the place, a cat hiding in the couch in the other expanse, scratches, etc. I got through the c. diff. finally … and the month of probiotics … but that individual scared me.
On the upside, I deem the lung problems (atelectasis that showed up attached CT at one of the ER visits) are improving and I remember that the pelvic fractures are lenitive. I still have bone best part edema on the MRI and adhering x-rays, and I have popping and cracking inside my pelvis when I turn upper or cross my legs or a single one number of things. I be in possession of also learned quite a bit not far from the way my health insurance drawing works, whether I wanted to or not. I utter an oath health insurance problems have become undivided of the worst sources of concern for me. It takes me ~y hour to get up the pluck and get all my paperwork contemporaneously just to pick up the phone.
Another positive shift is that I think I am at last ready to start keeping up through running stuff again … oh no, not me running, but keeping up by what others are doing. It’s been a in extent time since I have felt like I could flat hear about races or training. I divisible by two had trouble seeing someone running in c~tinuance a commercial. I’ve been opinion about going to watch some track races again.
Well, this has turned into a much longer post than I expected, but it sums it all up towards now. I am finding more happy places in life, here and in that place. I just need to gain a little bit of time out of surprises!
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Ibuprofen is usually a nonsteroidal anti-incendiary drug (NSAID).