#i dont feel particularly gross just extremely low energy

[spicebiter]

I dont feel Amazing. My roommates are out for Christmas and usually I'm pretty good about keeping house when I'm alone but I feel so sluggish and sometimes kinda feverish but I don't have a fever (I keep checking). Luckily I'm not eating a whole lot on my own so while there are dishes it's not so bad that I can't handle it when I feel a bit more okay. My roommates are coming back probably around 7-8pm and it's almost 2am now and I got up not terribly long ago. Hopefully I'll have them done when they get back ;-;

[chronicillschronicpills]

while i’m on an update train, whats my current health;

I use my tumblr as an outlet, a support community but most of all, as a personal diary of how i feel physically in the moment. it helps me track my illness so that i can accurately pass on the information to my medical team. forgive me if you find this extremely boring 

so, in essence, i’m just getting worse. my quality of life is low. my energy is non-existent and extremely severe (the worst its ever been) with bouts of extended sleeping (18-22 hours a day; and in a row). On a good day, i can leave the house to get a tea and thats it. On a bad day, i can only get out of bed to use the toilet. And i’ve been having a lot of bad days

i have a referral to a great immunologist who specialises in chronic fatigue and autoimmune disease (i’ve never been to an immunologist, only rheumatologist), however the appointment wait is approximately 3 months.  

my current blood test shows increased inflammation as seen through high c-reactive protein, low albumin, low protein, positive ANA. however, my scl-70 antibody is no longer positive, but i dont necessarily know what that means

i’ve been experiencing quite intense muscle jerks when i remain still. it happens over my entire body, not just legs. and i am not asleep when it happens. 

my pain is bad, but that is just normal for me now and can be managed through my pain meds, but thats difficult because i do not want to get addicted or have massive tolerance. ive been having node pain on my left neck and ear and clavicle as well 

my periods are whack as fuck. i have only has 3 in 7 months. my last period was so light i did not have to use any form of menstrual  protection. they are very painful. my doctor has ordered a bunch of hormonal blood tests which i have neglected to do as i have to do a fasting, morning test which has to be done by 9.30 am. this is a particularly difficult thing for me to do as my chronic fatigue is so severe. i cannot wake up at 9.30. she has also ordered to get a special ultra sound to check for endometriosis. 

skin wise, my elbows remain thick skinned and itchy and gross. i also got 3 hickie like bruises on my neck without any cause. my dry, thick, and cracking skin on my hands have subsided which is great. the prednisone cream helped a lot. 

i’m applying for a disability benefit as well as it is impossible for me to work 

the most important thing will happen at my next rheumatology appointment. my GP wants my rheum to commit to a diagnosis (at the moment it is just an ambiguous ‘connective tissue disease’ as my blood work doesnt point to anything obviously, however most of my medical team refer to it as lupus) so that we can move on with treatment options such as methotrexate, cyclophosphamide, imuran or benlysta. i am literally OPEN TO ANY MEDICINE regardless of side effects if they can help me. 

wow, congrats if you made it through this rant. 

love aston