Let's talk health. Sorry I've been out of touch!!

Hi everyone!

I decided to start a blog for my friends and family. And possibly anyone with weird, rare, obscure auto immune or autonomic diseases who've had to fight for their diagnoses. I'm with you. I've been out of contact for a while and I want you to know why. For the past year and a half I've been struggling with my health and just when we think we might have the full picture/full diagnosis/anything solid some specialist finds something new.

Everyone that knows me knows that I have Celiac disease, I've lived with it since I was thirteen. It's not a big deal. I also have Hashimoto's Thyroiditis (hypo), Sjogren's syndrome and Hypermobility. All of these are auto immune diseases that honestly are pretty low grade in the scheme of things, but like with any auto immune disease they're all connected and can trigger new auto immune or autonomic diseases. It's easier to explain here than through text or facebook chat so if you already know what I'm talking about I'm sorry, please bear with me. Auto immune diseases are hereditary (not contagious unless you're my child. Which you're not.) and basically it's your immune system seeing a cell system in your body as foreign and is therefore trying to eradicate it. The autonomic nervous system controls the things we have no control over: heart rate, internal temperatures, brain function, blood flow.Autonomic disorders can sometimes be triggered by some auto immune diseases such as Sjogren's.

Celiac disease is based in the small intestine, with the finger-like villi that line the small intestine. They absorb nutrients, and when someone with Celiac eats anything with the gluten protein (wheat, rye, barley and some oats) the immune system attacks the villi, causing them to shrivel and stop absorbing the nutrients. You see the problem there. Hashimoto's is the auto immune version of thyroid disease, meaning my immune system attacks my thyroid gland. With Sjogren's, the immune system attacks the "moisture glands" like tear ducts and saliva. You treat typically with eye doctors and dentists. Hypermobility's pretty self explanatory...your joints extend more than ten degrees past the point they're supposed to causing lots of damage to soft tissue, joints and muscle. All of these were diagnosed for me before or around high school, and once you get into the routine they're nothing to complain about. Unless your thyroid acts up and you lose hair and eyelashes, but hey. Falsies are our friends.

I started getting sick (again) last October. I was working as a legal assistant in a law firm downtown (loved it) and I think I drank about four to five cups of coffee a day. Healthy. I started having issues keeping any food down, I was tired all the time and I had sharp stomach pain. I lost twenty pounds in a month and got so sick that I ended up having to quit my job. I saw a Gastroenterologist who did all the typical tests: endoscope, colonoscopy and biopsies and when he didn't find anything his PAC suggested a gastric emptying study and small bowel study. The s.b.s. is a test where you chug a barium drink (it looks and tastes like chalk. Or what I imagine chalk would taste like.) and then they monitor how the liquid moves through your system to make sure there are no kinks in the intestines. There weren't. The g.e.s. involved me eating scrambled eggs with some kind of radioactive something put in (yummy...) and then I laid on a table on this machine for two hours while it recorded the food to see how fast it moved through my stomach. It didn't. Literally. I watched. So diagnosis number one after four months was Gastroparesis (sounds pretty self-explanatory. Your gastric system doesn't work.). Gastroparesis is autonomic. A lot of the medications for Gastroparesis have really bad side effects, so the PAC I saw (wonderful, brilliant woman who gives the best hugs) told me about a website where I could get a medication called Domperidone from New Zealand. Domperidone was taken off the market by the FDA. If you're pregnant or breast feeding don't take it - it'll go into your baby and no one wants that. I'm not pregnant though, so no issues there. I think the reason behind the FDA taking it off the market is Domperidone went straight to generic, meaning no money for them or the pharmaceutical companies. I have issues with the FDA, the pharmaceutical companies and insurance companies so I'm totally cool getting my medication from New Zealand. When they feel like funding research or approving medications for children with rare seizure disorders or, oh, auto - effing - nomic - or - immune diseases, for example, maybe I'll change my mind. Til then, I'll use the medication that works the best with the least side effects.

In January, I started having weird neurological symptoms. Numbness in my arms, hands, feet, never predictable, no pattern. I felt like my heart was always racing, I was always tired but I never slept well. My balance and muscle strength dropped (I danced ballet for 18 years. I've never had balance or strength issues. You can't do pointe if you have balance or strength issues.) I started having issues with vision, especially at night. I'd get blurred or double vision and have issues seeing different colors. It got to the point where I couldn't read or do needlepointe, my two favorite things. You can imagine what this did to my temper (if you know me. If you don't, well, I have a temper. I'm Scottish on one side and Italian on the other. God bless the man I marry.). So I started seeing neurologists. Plural. We started with testing for MS, which led to testing for Myasthenia Gravis. I ended up seeing literally nine neurologists, all top ranked in Colorado and the U.S. and well respected in their fields. Most of the respect was deserved.

Every single doctor decided it was something, and sent me to the next doctor for "another set of eyes". It turned into a game of he-said-she-said. The general opinion was that it was Myasthenia Gravis (rare, auto immune, attacks the connection between neurons and the muscle). So then began the fabulous testing to prove it. I had three EMG's done. One regular, two repetitive-stimulation. The rep-stim tests were especially fun. They get a machine (I viewed it as a taser that they used with gel so your skin didn't burn. Which is a plus, I guess.) and shock a specific muscle (my lat on the left side first time, right the second) and shock nine times in a row. Then you use the muscle, they repeat the shocks right away. Wait five minutes, shock again. Lovely experience, truly. Highly recommended. Not. Of course since it was me these tests showed nothing. (Hmm, is this a hint it might not be mg? NO! Doctors are always right when they pin you in a box on the first try!)

When the doctors saw that my tests were negative it had to be my fault. Here came the highly complimentary comments such as "Autonomic disorders are so rare I don't see the point in testing for them"; "I really don't see a reason for physical therapy, I mean, you're not in a wheelchair.." and my favorite, "I'm going to talk to you like I would my granddaughter. [I had grandpas. Two of them. They passed away. Thanks for the reminder. Jackass.] I think this is a confidence issue. I suggest going to a gym and seeing a counselor to boost your confidence." He was even smart enough to put it in writing for me. *Insert legal assistant evil chuckle* When one doctor suggested one more rep-stim EMG on the muscles on my face (Here's a fun game, let's tase your face first. Then talk.) I walked away.

It got to the point that it was completely beyond ridiculous. I know my body. I've lived in it for twenty-four years, with several lifelong illnesses diagnosed at a young age. I know when something's wrong and to this point I haven't made a wrong call yet. When my ankle was bad in high school, the surgeon went in and found exactly what I told him he'd find exactly where I'd pointed. When my back was bad after a dance injury and someone listened long enough to do the right testing, they found a fractured vertebrae with two blown out disks, one cutting into my spinal cord. Just because I refuse to be the idiot screaming and waving my arms around in the ER does not mean my symptoms are fake. It does not mean I'm having a moment of feminine weakness, that I'm being dramatic or faking this for attention. When you've been sick for a year, have lost your job, moved back in with your parents, lost all the savings you worked twelve to fourteen hour shifts to earn and have lost contact with the majority of the people you love it is NOT for attention. When you know there is something seriously wrong that you need help with, all you can do is look until you find a doctor willing to listen and to treat based on what you're saying, instead of what their shiny medical books tell them. I can't tell you how many times I was told, "Well, that just doesn't sound like Myasthenia Gravis.." Sir, I'm not trying to sell you on m.g. I'm trying to tell you my symptoms. If you remember, the MG was your idea, not mine. You're the doctor. I don't care what name you tack onto it I just want my life back. The human body doesn't read medical texts to find the symptoms it should present, it can wreak the kind of havoc Hollywood would be proud of all on its own. I'm lucky enough it's not cancer. These morons would have killed me before they found it.

My mom and I decided to give doctors in Colorado one more chance before we went on a roadtrip. We specifically looked up neurologists who weren't affiliated at all to the network I'd been seeing. The woman we found is from Hungary, got her second med degree here and is honestly one of the most brilliant people I've ever met. I can't explain intricate neurological disorders in my own language much less in a second. I don't know how she does it. She ran a whole new ream of tests including a spinal tap. No tumors, cancer, MS or brain swelling. What she did find was Dysautonomia and POTS. She found that my Autonomic system was in a complete downward spiral and that my heart rate was all over the charts. I didn't react well to the beta-blockers, so my doctor wanted me to be the first in a program she was emulating from the Mayo clinic where she did a second internship after her second degree. Basically, they do comprehensive care and physical therapy monitoring your heart and symptoms til your body gets back to the way it's supposed to be. It sounds absolutely perfect. The problem? It was based at the hospital that the doctors I'd previously seen worked at. And the wellness center never returned my calls. (Maybe they felt the angry vibes I was sending their way. Stranger things have happened. Or they weren't interested in the program because it's "so rare".)

Back to square one. My mom is a brilliant researcher so she started looking for other forms of therapy I could try for my POTS. She found that Biofeedback has been used to get your heart under control. Biofeedback is a relatively new science. The idea is the brain is so smart that if you show it what isn't working in the brain or the heart the brain can fix the damage. This is way over my head. My mom has a master's degree in special education, and she's done work with this. She's seen how children with some of the more awful diseases like Cerebral Palsy can overcome some symptoms to allow better movement and communication. This is real. So we found a team of two women who do Biofeedback in Colorado and they did a full exam on me. During the test I was sitting in a comfy chair falling asleep and I couldn't see any of the data from the EEG they were running. Mom could. One of the doctors took her out of the room and I started getting questions like, "Have you ever had a seizure?" "Have you ever had a brain scan before?" "Did you fall and hit your head recently?". So comforting. Don't get me wrong, the two doctors who run this business are literally the kindest souls you will ever meet and they're nationally recognized for their work. But come on, even an idiot would know that's not a good sign.

Anyways, they finished the exam and brought my mom back in. Basically, the test was all over the place. The two hemispheres of my brain aren't communicating the way they should. One hemisphere would be doing one thing and the other would be doing its own deal. They think it has to be structural. Also, at resting my heart rate was at 118. I thought this was pretty good since recently it'd been around 125-145. Wrong. Apparently it should be around 50-70 for my age and size. Huh. On the bright side, I know the headaches and the pounding chest and dizziness symptoms had a really good reason for being there. Take that old "grandpa" doctor!!

I don't know much about the brain, but being around so many of my mom's students, I know that this isn't good. Typically the only reason the two hemispheres don't communicate is with epileptic children who've had the connection severed to help their seizures. I don't have any of those symptoms. I'm bilingual, I can still speak and write and type, I have no memory issues and I'm pretty sure I would've noticed a seizure in one of my twenty-four years. I've spent years around children with seizures and I've seen every kind. So unless I'm having seizures and I don't know it? I don't know. This was two days ago. The doctors are taking a week to compile the full report and giving me two copies so I have one and can give one to my doctors. I'm checking in at the Cleveland Clinic on Monday Sept 30th. I really don't care what it takes at this point. I've had a broken spine and a spine surgery. I wasn't messing around then and I'm not messing around now. If my brain's doing its own dance and my heart's working two to three times as much as it's supposed to I'm chilling (literally speaking. Hospitals are cold and those gowns do nothing for warmth.) in a hospital til someone does something.

Sorry for the book.

If you made it all the way to the end, I salute you.