“People with Ehlers-Danlos syndrome have a heightened awareness of pain… So, if I injure myself I’m going to be sore. But, if a person with Ehlers-Danlos injures themselves they’re going to be sore to the power of ten.”
— Dr. Brian Mulcahy in the EDS Awareness Ireland conference, 2012 (via moretocome)

(via mandymorbid)

iamtheprofessionalpatient:

“Where we were surprised is the difference in how much brain they used to do the task compared with the healthy group. It was 50 times larger,” Chialvo told Reuters.

This is the first demonstration of brain disturbances in chronic pain patients not directly related to the sensation of pain.   


Read more at http://www.redorbit.com/news/health/1244387/chronic_pain_can_damage_brain/#Bz0DdwpMSceMZdSD.99

(via violenceandscience)

“A family on a healthy diet can expect to pay $2,000 more a year for food than one having less nutritious meals, say researchers who recommend that the cost gap be closed. The research in Thursday’s issue of British Medical Journal Open reviewed 27 studies from 10 high-income countries to evaluate the price differences of foods and diet patterns.”

"Healthy eating adds $2,000 a year to family grocery bill", CBC News

Let the record reflect the conclusive result of empirical research spanning 27 studies from 10 countries: healthy eating is fucking expensive and people who deny this reality are annoying and full of shit.

(via zuky)

Truth. Especially if you live in a food desert.

(via cognitivedissonance)

(via diesdiskordia)

Whatchoo Talkin’ About?

I spent many hours in MRI machines this week and got oodles of imaging (both MRIs and MRAs)! Here’s a sample.

These are two views of the same arterial structure in my brain, the Circle of Willis. It seems my brain is missing some arteries? There is a branch on the lower right side that is absent on the left, as well as a constriction of the arteries on the upper left as compared to the right (the right and left are designated by the R and L on the far side of either images). I wait with baited breath for the radiology reports. Perhaps I’ve had a series of small strokes? Perhaps my brain structures developed strangely due to my premature birth? Both are possible.

image

image

Screen Shot 2013-12-07 at 12.17.52 PM

Unfortunately, the MRAs ordered by the specialist at Columbia University are unlikely to be covered by insurance. They are nearly $600 each, and I received two of them.

image

That’s over $1000 in medical bills on top of the roughly $700 in bills I already am drowning in debt over. I only get $817 a month on Disability, and about $550 of that goes to rent and utilities. So, if you’d like to donate to my paypal (rachaelnoel@gmail.com), that’d be a super Christmas / birthday present!

crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.
crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.

crypticcripple:

stablercake:

hyperscraps:

vashito:

I don’t have chronic pain but this artwork is so nice to look at *^*

Just because we’re not writhing on the floor doesn’t mean we’re not hurting. We’ve just gotten really good at hiding it and functioning with it, otherwise we’d literally starve in our beds.

Lived like this for nearly a year. Got super lucky that it was repairable, but feel for those who have conditions that are not. <3

I wish I had days THAT good.

“The ill person who turns illness into story transforms fate into experience; the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability.”
— Arthur W. Frank, The Wounded Storyteller: body, illness, and ethics (via killaj0ule)

(via crypticcripple)

Comics Cardboard Cures Cubital!

 fraulein-brittanica said: I care about you. I wish I could do more than that for you. (I do have to ask, how’d you hack together an arm brace? I’ve been having intermittent symptoms of cubital tunnel syndrome, and I know I tend to sleep all knotted up)

Well, here’s how I did it. I got a pair of small chenille legwarmers that were probably for children. I put one legwarmer on my arm, and it reached from wrist to past the elbow. I then got a comic book backing board, and wrapped it around my elbow as a tube. Then I put the other legwarmer over them both, and keep it in place with a hair band or two.

CLASSY!!

Meh. It works. I think something plastic would last longer than comic backing boards, but anything with some structure to it that you can curve into a tube will work well between the two layers of legwarmer to keep your elbow from bending. It does start to slide down the arm after a while, so you might find a better method than I have.

(Also, it’s really wonderful that you care. It matters to me.)

EDITED TO ADD: the comic backing board won’t wrap ALL the way around your arm, probably. It doesn’t need to. As long as it’s preventing your arm from bending inwards, it’s fine.

Rooomatologee, and the Case of the Mystery Strep.

My rheumatologist is fabulous. Doctor Whitman at the Hospital for Special Surgery is a wonderfully thorough doctor. He takes his time with patients, and he tests for the full spectrum of possibilities. When in the office with him, he makes sure that you have your own print out of the test results, so that you and he can read through them together and discuss what they mean, and he also mails you copies of the test results to your home. 

I’ve got lots of test results at the moment. The bulk of my chemistry is normal, except:
 
Magnesium: low
Vitamin D: low
MCV: high
MCH: high
Macrocytosis: positive
Complement C3: low
Complement C4: low
Anti-Streptolysin-O: high
 
Also, according to the tests it seems my urine is cloudy and crystally and mucousy and I need to drink more water or I’m going to get more kidney stones. (Kidney stones are horrible, by the way)
 
My previous infection of Lyme Disease from four years ago is no longer in my system, which is fabulous. The rheumatoid factor came back negative, as always. 
What this means:
 
Low C3 and C4 is a classic indication of Lupus. However, it is also an indication of fighting off systemic infection. Macrocytosis is an enlargement of red blood cells, most often caused by bone marrow dysplasiaAn elevated MCH blood test result indicates macrocytic anemia due to folic acid or vitamin B12 or thyroid problems (but my thyroid has been tested repeatedly, and is fine). MCV tests the size of red cells in blood. The presence of red cells smaller OR larger than normal sized ones also indicates anaemia from defieciencies or bone marrow problems.
 
I’d been told years before that I had borderline anemia and hypotension, but was instructed to just eat more red meat and salt. I enjoyed that suggestion. 
 
I’ve started taking Vitamin B12 and Folic Acid to see if this helps the Macrocytosis/MCV/MCH situation, as well as Vitamin D, Magnesium, Vitamin C, Vitamin E, and a multi, as instructed by my doctor.
 
After these tests were taken, I was also put on a new regimen of Prednisone; this time, Monday through Thursday every week. Strangely, I did not get that same spring in my step that I got the last time the steroids were taken. When I was last on Prednisone, I was going to the gym every day to stretch and cycle, was trying to take every advantage of feeling like my body wanted to MOVE. This time, there’s been little physical improvement, though it does make me restless and sleep terribly. 
 
Then, this week I received MORE test results in the mail this week, indicating that I have:
 
Complement TOTAL: low
Anti-DNAse B: High 
 
The Anti-DNAse B test detects antigens produced by the presence of a streptococcal infection (strep throat), and is elevated in most patients with rheumatic fever and poststreptococcal glomerulonephritis (a kidney condition).
 
Now, I've been terribly sick with a horrendously sore throat for weeks, and a low grade fever that dips and peaks as it pleases. I'd assumed it was just allergies or a cold, and I was just suffering more severely than usual due to the prednisone weakening my already crap immune system. However, seeing that there was a test indicating a strep infection, I called his office to see if I should be on anti-biotics. They had me come into the office for a throat culture and ANOTHER blood test.
 
The doctor called me yesterday, leaving a message explaining that my throat culture came up negative, but my ASO titer was high. A high ASO usually indicates the possibility that a previous Strep infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease. He is putting me on a regimen of penicillin (only just decided over a phone conversation that took place in the midst of my writing this).
 
Meanwhile, I’ve been having abdominal pains for the past month, and have felt something not quite right in my lady parts. A visit to the gynocologist this week indicated that I do indeed have something going wrong in my uterus. There is something pressing against and into my uterine wall. The location would indicate the possibility of an ovarian cyst, and I do indeed have Poly Cystic Ovary Syndrome. However, during his examination, the doctor did state that it felt more like stool than a cyst, and he is sending me to get an ultrasound in the next few weeks to find out what is going on. 
 
This is worrisome. Without doubt, I have some kind of connective tissue disorder, most definitely a genetic one, and very very likely it is a form of Ehlers Danlos Syndrome. While my joints of the shoulders and hips are excessively stretchy, I am not hypermobile, nor do I have stretchy skin. The only form of EDS that does not have hypermobility is the Vascular type of EDS. While all forms of EDS include a tendency towards internal tissues stretching apart and rupturing, the Vascular type of EDS is far more prone to organ rupture, most often of the intestinal, uterine, and arterial walls.
 
As a young teen, poking about my body naked in the mirror, seeing what was what, as a post-pubescent does, I came to find that I could easily slide a few inches of my large intestine outside of my body. I know now that is seriously abnormal. The very few experiences with anal sex I’ve ever had were quite untantalizing (no offense to those of you who dig it, it’s just REALLY not my thing), but did occur without physical resistance or pain of any kind, and much to the shock of my then-partner, not very tight. This is also terribly unusual.
 
Therefore, it is a real possibility that my current abdominal issues are due to intestines stretching apart and the rupturing prolapse of part of my intestine is pressing on my other abdominal structures. It could easily cause the cloudy and mucousy urine, as well.
 
Or, maybe I just have a squishy ovarian cyst.
 
Either way, all surgery is dangerous when your tissues stretch and tear apart and don’t heal well. 
 
Things are getting complicated.
 
 
if you’d like to help me pay off my mountain of doctor bills that are going to collections, donate to my PayPal!
 
Or feel free to get me something from my wishlist.

Bitch bitch whine whine.

(Here is a venting post about how my health is at the moment. Less cross referencing of doctor test results, more bitching and complaining about being sick and our fucked up system.)
 
My health has been crap these past weeks. A fever all Halloween weekend ruined all my plans, and I’m still sick. I thought it was allergies and tried plowing through, but then I received some test results in the mail (I do so love my rheumatologist for that), and it seems I have perpetual strep in my system. I went back in for a blood test and throat culture, the culture ended up negative, but my ASO titer count was high. So…. who knows? The doctor might give me antibiotics, if he ever calls me back.
 
My temperature keeps leaping about like mad. The lower-than-average but normal-for-me temperature of 97.4 will leap to 99.1 and plummet to 96.1 all in the same day. Repeatedly.
 
My feet are so constantly cold I can’t sleep, even if I put on so many blankets I’m sweating. The doctor that treats hypotension won’t see me because I’m too young. 
 
I’ve been asked to come by WFMU three times that I’ve had to cancel because of sickness. I am probably going to miss the Doctor Who Convention my fellow got us tickets for this weekend.  Opportunity after opportunity passes me by.
 
I’ve been sleeping with a home made brace to keep my elbow straight while I sleep. This is in the hopes that the problems I have with my right hand working are some kind of nerve impingement of either the cubital tunnel and/or ulnar tunnel syndrome. It seems that sleeping witha brace that limits the elbow bend tends to improve the syndrome better than surgery in many cases. Perhaps I just made my right arm angry and hurt from age 19 to 26 working as a barista. It’s a lot of hard work on the hands and arm joints, y’know. Here’s hoping i could actually improve it and start using my right hand for drawing again.
 
I’m afraid to stay in this country. I’ve only been on Disability for two and a half years, and already my monthly benefits have been cut by about $15 and my foodstamps $18. I’m living $100 under the Federal poverty line at $846 a month, and that’s as living off Federal Disability. It’s the most I can get. 
 
I keep breaking into tears, frustrated at the state of my life, at how scary my medical future is and not having very much support whatsoever, besides the fellow. At how much wasted time there’s been, and how little time I have ahead of me, watching my abilities wane exponentially.

Thanks.

… to those who wrote regarding the previous post. I ended up going to the ER just to make sure and was assured, after getting a sonogram, that everything was fine. 

Triple play.

Hey humans. I am a bit worried, and not sure if I’m over reacting or not.

See, the doctors, they’ve determined that I have a connective tissue disorder of some kind, most likely genetic, most likely Ehlers Danlos Syndrome, and quite possibly the Vascular variety. I was sent for a scan of my heart, which came back fine, but instructed that such did not mean I was in the clear, and could very well still have Vascular EDS. Well, I’ve got family members with strokes and prolapsed uteruses in many women on my mother’s side. I’ve got see through skin and mystery bruises and a vascular bump thing on my face that throbs with my pulse.

Whatever. None of that is news. What is worrying me at this moment is that I’ve noticed recently that I can feel my pulse in my abdomen, to the left of the belly button. My pulse is visible in the skin around my belly when i am supine. This is something relatively new. Perhaps a week or so.

So. 

When I look these symptoms up, I find out about abdominal aortic aneurysm (AAA). This is not that common in people as young as I (36) except those who have certain specific conditions, one of which is, you guessed it, Ehlers Danlos Syndrome.

I am a bit freaked out. 

Advice? Articles to read? Good NYC vascular specialists to recommend?

EDITED TO ADD: I did end up going to the ER, and they did end up giving me a sonogram, and everything seemed fine. So, that’s awesome. But they did seem concerned enough to check. 

 

 

Over the last year, Dr. Sanjay Gupta has been working on a new documentary called “Weed.” The title “Weed” may sound cavalier, but the content is not.

"One of the conditions for which it was prescribed was neuropathic pain. It is a miserable pain that’s tough to treat. My own patients have described it as "lancinating, burning and a barrage of pins and needles." While marijuana has long been documented to be effective for this awful pain, the most common medications prescribed today come from the poppy plant, including morphine, oxycodone and dilaudid. Here is the problem. Most of these medications don’t work very well for this kind of pain, and tolerance is a real problem."

“To put a human face to the food stamp issue: I am on Disability. I am seeing doctors and have something wrong with my spine, nerves, brain. I only have doctors now due to coverage through Disability. I only live through what I get via Social Security Disability and Supplemental Security Income. That equals 817 a month. My rent, utilities, transportation, and cel phone equal roughly $650 a month. (public housing and section 8 is all but disappeared) Gym membership and bank fees, another $35. That leaves me with less than $150 to live on a month. I would literally end up malnourished if I didn’t get the $200 a month for foodstamps that I do. I refuse to be ashamed of being poor just for being ill. There are a lot of people in my position, most of whom are veterans and/or senior citizens. Cutting Food Stamps is greedy, and politically sociopathic behavior.”

rnfox:

Yesterday’s attempt at drawing what mystery hands feel like, as drawn by the afflicted hands. #numb #clumsy #neuropathy