World Rare Disease Day 2015

Chronic illness selfie.

Today is Rare Disease Day. I was going to record a video, but ironically my rare diseases got the best of me the last couple days.

In the middle of a dental emergency gone medical, I have been to the dentist, the ER, urgent care, and the cardiologist in a little over a week. By the end of this week I will have been on 3 types of antibiotics, 2 narcotics, had a shot of morphine (or as I like to call it, worthless), and received a new diagnosis or two that I already suspected I had, since it’s related to the other 3 rare diseases I have.

I have dysautonomia and hyperandergenic postural orthostatic tachycardia syndrome, which means that my autonomic nervous system flips out when I not laying down. The autonomic nervous system controls all the things your body does that you don’t have to think about: blood pressure, heart beats, breathing, sweating, digestion, fluid regulation, and so on and so forth.  Something about the infection in my jaws and teeth along with the stress of it all set it off this time in an obvious enough manner that got me diagnosed. I’ve gained 10 pounds in the last week due to swelling. I’ve been in a constant state of tachycardia (fast heart beat) and palpitations (noticeable heart rate) along with high blood pressure as well. 

I get sweet old lady compression stockings to go with the cane I use to stay upright. My health insurance doesn’t want to pay for them, much like they don’t want to pay for an ultra lightweight wheelchair I’m trying to figure out how to get so going grocery shopping doesn’t take me out of play for 4 days afterwards due to fatigue. Let me tell you, compression stockings that go up the entire leg? Pricey. Like pair of quality jeans expensive.  Meanwhile I’m also wrestling with the state over SNAP benefits, because we can’t afford the multiple food allergy and celiac (medically suspected but not diagnosed) diet otherwise that keeps us all healthy… Which is also low in vitamin a while high in potassium and sodium.

So my rare diseases, which all but the pseudotumor cerebri my husband also has… Every day is rare disease day for us. We live with Ehlers-Danlos Syndrome Hypermobility Type, Dysautonomia/POTS, Wolff-Parkinson-White Syndrome, Pseudotumor Cerebri, multiple food allergies/intolerances, fibromyalgia, and other things I’m too foggy to remember every day.

But we manage and we smile. We have as much joy as sorrow. And we even have some good days.

I’m going to talk more about these conditions this year, because it’s part of my truth and story. I’m a disabled person. I’m not going to stop talking about it… Well, okay, I’ll probably hold off on until recovery after getting 6 teeth removed on the 10th. I don’t plan on blogging while on narcotics (except, you know, today…).


Ehlers-Danlos, Hypermobility, and Finally Finding Answers to Chronic Illness (Subtitle: Where I’m At)

I have been quiet lately. I have a lot on my plate. I am behind in life and everything I have promised to others. I am sick and tired constantly. This is a flare. The pain is always looming on the edge of my bodily perception. The bermuda grass is taking over my garden outside, and as I continue to find myself sick feeling if outside in the sun too long I’m beginning to pack away the dreams of a farm. Maybe next life.

We’ve traveled a lot in the last couple months. My husband’s mother was diagnosed with a rare form of cancer, so we have been traveling back and forth to see her as she goes through radiation and chemo. We went and visited my father in Iowa for the first time in 4 years. Travel makes me sick. I’m finding as I get older (because 33 feels ancient in this body), it’s getting harder and harder to recover from the pain and fatigue from a long car ride.

After nearly 20 years of trying to find an answer to my chronic fatigue and pain, I was diagnosed last month with benign joint hypermobility disorder. That’s an outdated term for joint hypermobility disorder, which is also likely a full-blown case of Ehlers-Danlos Syndrome Hypermobility Type.

We’d worried I had Lupus. We looked at the criteria for Fibromyalgia and nodded slowly. We found that I was genetically at-risk for Celiac Disease, and considering how we discovered my bipolar disorder was actually a severe case of gluten-intolerance we suspected that I did, in fact, have Celiac Disease. It was just that I’ll never be able to confirm it, because after being off wheat for my daughter’s food problems as an infant taught me that I can no longer eat gluten without getting violently ill. There’s also an egg allergy/intolerance thrown into the mix.

But even with the food issues worked out for myself, I was still in constant pain. I was still sick. I was finally sent to a rheumatologist with a full lab work up saying I was slightly insufficient in vitamin D and had inflammation… And a history saying that my liver freaks out any time I get put on a new medication and starts eating itself.

At the end of 4 hours split between 2 appointments and 5 rheumatologists (at a teaching clinic), I came home angry that all of my problems could be blamed on being double jointed. They might not have spent enough time explaining things to me. When I started googling, though, the final puzzle piece fell into place and I realized that they were, in fact, correct.

I have Joint Hypermobility Disorder, which depending on what expert you talk to is also Ehlers-Danlos Hypermobility Type. This means that I am incredibly flexible, which I could have sworn was supposed to be a good thing. What it really means, though, is that my muscles are weak and fatigued constantly, because they are working overtime to keep my joints from dislocating…

Because my joints dislocate or subluxate (slip in and out of place), or they do anything in between those two things. It’s painful. I’ve dislocated a hip in my sleep. I’ve dislocated my back bending over to pet my cat. My neck is so weak that I recently cut my hair, because long hair was giving me severe headaches due to the weight it was putting on my neck. I am tired all the time, because my spine compresses and causes severe, burning nerve pain up my back down to my toes.

I fall sometimes. My ankle rolls, and suddenly I’m on the ground.

EDS is a genetic callogen defect. Collagen is the glue of the body, and it’s in most of your body. Mine doesn’t work right, and because of that some days I feel like I’m falling apart. This has been going on since I was a teenager, at 14 my knees started going out. I had a doctor tell me at 16 that my sciatica was simply due to being obese and having poor posture, because, you know, sciatica is really common in 16-year-olds.

My pregnancy was a nightmare, but I couldn’t get my OB to listen to me, because she’d had a bit of back pain while pregnant and it was normal…  Except many women end up in wheel chairs and destroying their backs with pregnancy when they have this, and, oh right, epidurals?  They don’t work, because local anesthetic doesn’t work.

The funny thing is that beyond the pain and fatigue, I thought all of this was normal. Despite it being a rare disease, both of my parents have these problems to varying degrees. My grandmothers on both side had problems

With this I most likely have an autonomic nervous system problem, which causes my heart and blood pressure to do crazy things throughout the day making me feel weak, dizzy, ill, and anxious. My heart races. I find myself having a hard time breathing. Apparently this isn’t normal? Apparently it’s not just anxiety.

Apparently it’s normal for a person with EDS/JHS to be diagnosed with a million things, including mental illnesses, because doctors learn this is a rare disease they will probably never see. It took me nearly 20 years to get a diagnosis, more if you count my stomach problems that started at 9.

My husband is now working on getting his own diagnosis for EDS (I would have preferred the odds be used towards winning the lottery instead of us both having the same rare disease, thanks). Our GP looked shocked and said, “I’ve never actually seen this before. I’m going to have to research more,” when he pulled his skin away from his arm and neck to show how it stretches…  Well, after she cringed and gave a very professional “Ew.”

I don’t plan on this becoming a blog about my chronic illness, but I probably will vent from time-to-time about it. This is a personal blog, after all, and I talk about my life here. This is a huge part of my life. Now my life is filled with physical therapy appointments and starting next week cognitive behavioral therapy to help me manage the pain and anxiety that has developed due to pain and what we thought were panic attacks.

Mainly I just wanted everyone to know I’m still here. I’m still alive. I’m working on stuff for the blog this afternoon, including videos! I’m working on getting thank you notes written, but truth be told I’m slow because lately my hands haven’t been wanting to hold pens much… Which doesn’t bode well for my art. Little bit at a time. I will get things done.

More on EDS:
More on Hypermobility Disorder: