I’m glad it’s not just me, then!! Inflammation might make sense, I’m *always* really prone to inflammation for whatever reason.
I love that doctors have no idea, of course :p As always!

diary-of-a-chronically-illkid:

flaresof-fibro:

If you couldnt get out of bed, but still smiled today

(via fibrojill)

I was just out buying groceries and I had this episode (?) thing going on with my right arm?
First I was carrying the basket around Safeway for like 10 minutes, and most of it was balanced on my left arm anyway. Then I drove to Giant(cause Safeway didn’t have the soup I wanted) and my right arm was feeling funny, sort of like it’s asleep but without the tingling, like how it gets heavy and hard/slow to move, but you still can move it okay. 
Then I walked around Giant for maybe 5 minutes if that, and I guess most of the weight of the basket was probably in my right arm, but all that was in it was 3 cans of soup and my phone. 
So then when I go to check out at Giant I could hardly move my arm up to swipe the card and hit the credit/pin #, it was just shaking soo badly. 
So then I go out and drive home using just my left hand with my right arm limp and still feeling heavy. 
(Then I get home and tell my mom and like 2 seconds later she’s like “can’ t you do these dishes now? and I’m like …….)
Anyway, so it’s still happening and I could barely carry my less than a pound tray upstairs because I was shaking so badly. 

Idk what caused this like, my shoulder’s not subluxed, and usually when fibro makes things weak(like from carrying baskets) it’s because they hurt, and this doesn’t hurt otherwise, it’s just shaking and hard to move. 
But idk what’s causing it neurologically, as far as I know this isn’t a CCI or Chiari/low lying tonsils thing? Maybe the subluxed C3 or the herniated C6/C7/T1 that I have? I DONT KNOW BODY STOP BEING A MYSTERY I USED TO LIKE MYSTERIES BUT NOT HEALTH ONES STOP!

It just feels weird to me that whenever I see people who can’t afford their medical bills, which is like everyone cause come on really medical bills are fucking expensive, I wish I could just pay for everyone myself. Which of course I can’t because I can’t afford my OWN medical bills. But like, I hope someday I can have enough money where I can actually do things with it, because I KNOW how much of a difference in someones life that can make. 
And then there are rich people out there that are living in their ridiculously nice houses who have enough money for who knows what and they aren’t even willing to pay taxes that support federal aid for illnesses and disabilities.
Like I don’t get that at all, how are some people really that selfish?

quirkygrl22:

Ehlers-Danlos is so much more than just hyper-mobility. For me, it’s pain, surgeries, fatigue and passing out. It’s dozens of pills, wheelchairs, braces, and planning out each day with precision. It’s missing out on fun with friends, giving up passions, and having an uncertain future. Help a bendy girl out by telling someone (especially a health care professional) about EDS. The sooner people like me are diagnosed, the sooner they can get life-altering and even life-saving treatment. The more people who know, the better EDS patients will be treated in clinics, emergency rooms, and out in society. The more people who care, the more funds will be directed to research so someday we can find a cure. Let’s make EDS a household name and then something condemned to only exist in history books.

draggrif:

misterlisa:

What do you do when you feel like you can’t take it anymore? Can’t take not being able to study/work? Have you found something else to do? What do you do to stay sane?
I must find something otherwise I will explode. I can still be somewhat productive.

Oh man, I know the feel *hugs*  There’s still lots to do, no matter what your interests are.  If you have a creative streak, writing, drawing, or making little crafts is fun and inexpensive, or if you have steady hands and eyes and want to have something to show for your work, needlecrafts are awesome.  If you like videogames there’s a ton online for free (try jayisgames) or books (booksshouldbefree)  If you want to be helpful to others there’s micro-volunteer sites online, and even sites where you can help digitize old books, help the military strategize, help cure disease, or categorize galaxies for NASA (btw, nothing sounds more badass than telling someone you’ve spent your day helping NASA)

^^^yes!^^^

also. 

Read More

so i think i’ve found a few brands of dairy free stuff, thank you! :) 
now the problem is I haven’t eaten a real day of food in 3 weeks so i’m not alive enough to go to the store, and both my parents are doing the “you’re 20 you can buy your own food” shit because obviously, being 20 is somehow relavant here…

You know you’re chronically ill when you can tell at just a glance what store someone got their prescriptions at because you recognize the individual label.

creepykeyla asked: Hey girl! So I was inspired by you and the other fantastic invisible-illness-awareness blogs I've been following, and I decided to start my own to add to the support =). Would you mind promo-ing it to your other followers for me? The URL is all-the-spoonie-love(.)tumblr(.)com. n_n

Sure! It looks awesome!! 

EVERYONE GO FOLLOW
all-the-spoonie-love.tumblr.com 

HERE

HERE

HERE

HERE

HERE

Adventures in Hell Attempting A Diagnosis

So if you’ve seen my posts a lot recently you know I’m trying to confirm my suspected diagnosis of Craniocervical Instability, and determine whether or not i have a Chiari Malformation as well. 

So I’m seeing a lot of idiotic doctors here at home that don’t know what they’re talking about at all, so there’s that. I have an appointment with Dr. Henderson, THE expert in CCI/Chiari/related conditions in Ehlers-Danlos Syndrome in 2 (very long) months. So I’m trying really hard to find a doctor who will diagnose me with something close enough to correct that I can be prescribed appropriate pain management drugs in the meantime, and I have been trying to get upright MRIs(Dr. H requires them before he’ll really do anything) so that I’ll have them already when i see Dr. H and not have to wait.

So I called Mayfield Chiari clinic after being recommended to, since they do free consultations. I sent them my non-upright MRIs I had done, and after almost two months of waiting for them to tell me anything, today they called and said they didn’t see any significant manifestations of Chiari Malformation, so there’s nothing they can tell me. 

Now I’m confused because 
a) I want to be excited that they don’t seem to see chiari
b) I know my MRIs showed signs of retroflexed odontoid and they didn’t mention that
c) I KNOW my MRIs showed loss of cervical lordosis and two herniated disks, because that was even in the original report, and they didn’t mention that
so that brings us to
d) should i even trust that they didn’t see chiari when they missed all the rest of that? 

I know they aren’t super “experts” in the area like Dr. H or many at The Chiari Institute in NY, but I just don’t know. So I’m just worried about whether I should trust any of their stuff or not. I want to say no, since in my opinion everything seems to point towards CCI since I have symptoms that wouldn’t just be cervicogenic migraines or anything like that, because I have instability signs(loss of lordosis, 2 herniated disks, a subluxed disk, extended range of motion…) and all the grinding/popping/pressure/inflammation that points to there being something identifiable, not just “nerve pain.” 
Then there’s the slight worry that maybe I just have something REALLY rare since there have been a few symptoms that don’t fit in with CCI, like a blood clot coming out of my ear(just the once, though?) and odd other things like intracranial pressure, but I suppose that could be explained if the spinal cord is significantly compressed, which would show on my upright/flexion MRIs if I can ever have them done.
But then whenever someone tells you something’s not wrong you’re afraid of not believing them and ending up either being accused of or actually being a hypochondriac. *sigh*
And even though I’m still pretty sure I AM right about the CCI now I just feel like I’m being dramatic by having been posting that I’ll probably need fusion surgery for it (since if I’m right, I will) and having that be my answer for “so why aren’t you going back to school next year?”

Soo yeah, there’s my update. Summary is I don’t know what exactly to think, and even though I still think I’m right about my symptoms, I’m slightly discouraged.

also letter e) of things to worry about-
Mayfield’s website says this:

No it is definitely Ehlers- Danlos Syndrome. *sigh*
So maybe they aren’t so trustworthy in reading MRIs and medical knowledge, anyway?