first off, i'd been suspecting for quite sometime that i have more than just hyperthyroid and discussed the possibility with a few doctors. but after the one who initially diagnosed me moved i had trouble finding one who listened. none of them were able to grasp the scope of my complaints let alone connect the dots. then one night last summer i ended up in the emergency room and the doctor who i saw (really listened to me then) suggested that i get tested for lupus, ms, and other autoimmune disorders.
since then i've put off having further testing and have been treating my symptoms individually (which will ultimately be the plan i end up with a more comprehensive diagnosis anyway). but in the meantime had my bi-annual eye exam which sort of changed everything.i learned that i have very dry eyes. i'm missing two of the three layers of moisture that we rely on to keep our eyes free of debris and lubricated.
it is now very likely that instead of the more common/well-known autoimmune disorders i have sjogren's syndrome, which means that i have inflammation in response to my body not recognizing and then attacking its own cells mainly in my mucous membranes. when this happens all of my systems could be (and usually are) stressed. due to all of this i will be seeing a doctor (who i know and trust) shortly after i move. hopefully he will be able to get the results quickly as whatever i have has started to impact my day to day life.
when i share this with people it can sometimes feel like they don't really understand. many times i have heard "but you're one of the healthiest people i know." or "you don't look like you're sick!" (i do want to say that there are a bunch of people who listen and are super supportive and i don't discount that at all. i actually appreciate it very much.) it seems that i've either done a terrible job explaining it or people just don't understand how serious this has become...so i thought it'd just be best to write it out.
here is an overview of what i have been experiencing:
- dry eyes; gritty, red, burning
- dry nose; sore, bloody, crusty
- dry mouth; gums bleed, sores
- dry throat; scratchy, cough
- dry skin
- sore joints
- muscle aches
- nerve pain
- bruises easily
- digestive issues
- swollen glands
- extreme fatigue
- racing pulse
- shallow breathing
specifically my right arm is an issue. pain radiates in electrifying waves from my shoulder down to my finger tips and sometimes it even goes the other direction across my shoulder-blade, up my neck, and down my spine. at times it shoots like lightening bolts and when this starts to happen it becomes difficult for me to do things like type, hold a fork, or pretty much anything else that involves using my arm or hand. the more repetitive a task is the harder it is for me to sustain for any length of time.
if i try to keep doing something through the pain it gradually becomes the most intense pins and needles i've ever felt. then my arm feels swollen but it isn't and i then can't really feel anything but a slight pressure change when i touch something. i can't grasp or hold onto anything for more than a few seconds. i either have to put it down because of the pain or i drop it. needless to say i've been learning how to use my left hand (in an attempt to reduce the number of broken dishes).
as soon as the pain is that bad i stop being able to sleep normally which starts a cycle of fatigue and insomnia. i eventually get to a point where i'm so tired that i lay in bed for most of the day. but then i end up awake half the night. or i am up and doing stuff all day which exhausts me and i feel like i could fall asleep instantly if only my body didn't hurt so intensely. when i haven't slept it feels like my heart begins to race and my breathing becomes more work.
when i'm laying down my legs feel sort of like they are floating or detached some how. (it is really weird, i know.) usually the only time that i can feel them is when they are throbbing and achy. periodically it feels like i can feel my pulse all throughout my body, but especially in my legs. usually when that happens it sort of feels like everything is numb but incredibly painful at the same time (which i know doesn't really make much sense at all).
obviously the dryness is also an issue. i'm currently using lots of good oils on my skin, drops in my eyes, drinking as much (water and tea) as humanly possible, sucking on unsweetened lozenges, and brushing my teeth with coconut oil and baking soda. as far as my digestion is concerned, when i stick to foods free my allergens (dairy, eggs, wheat, yeast, mushrooms, corn, and soy) i am okay. but as you can imagine, that poses challenges in and of itself (especially as i am also a vegetarian).
oh yeah, i forgot to mention that i get this really awesome thing called "brain fog" which basically means i don't always remember where my thoughts are going, sometimes i jump around from idea to idea, and i forget lots of details. it feels like i am going through the motions on auto-pilot, which poses problems when i'm supposed to be at my job doing things or when i'm interacting with others (especially new people). i also find that it makes it incredibly hard for me to absorb new information or alter my routine (ack! school.)
as you can imagine it has been pretty intense over here. and as much as i'd like to be a part of the super awesome thing you're going to or even just come over to your house and hang out, sometimes that isn't possible. and the more i try to go against my body it just pushes back even harder. so please don't take it personally if i decline your invitation, miss your call, or forget that we were supposed to meet up. i am doing the best that i can, i promise.
while i was writing and editing this post i ended up back to see the doctor. i was feeling pretty dizzy and fainted (i'm not sure how long i'd been out when i woke up, but i was on the bathroom floor). on top of that i've been feeling short of breath and was pretty much exhausted and hurt all over. he did a cardiac exam and tested my reflexes and then they took some blood. it turns out my kidney, liver, and thyroid tests were just a bit off. additionally, my pulse was 52 and my blood pressure was elevated (especially for me.
since he wasn't my primary care physician he didn't do much but tell me my lab results and that my pulse/bp puts me at risk for a heart attack (so to stay off my feet and get lots of rest). i still have a lot of questions. later today my mom is going to come and pick me up. i will be back in jamestown this weekend and probably for a bit next week. hopefully i can get into the doctor while i'm there and get some answers.