No, I don't mean the band Godsmack in my title reference.
I'm trying not to offend anyone who is or is not religious, that's never my intent. Through my experiences my faith has grown so much stronger, but I don't talk about my religion. Faith is a very personal thing and it's really none of my business what anyone else believes or which practices they prefer.
That being said.
There's a joke in my family about God smacks. If you know me, you probably know how oblivious I am. I get really focused on something and I literally won't see/hear anything else. It's really handy for school and work but makes for one seriously socially awkward me.
With God smacks I have this mental image of a stick person walking down a path. God kindly puts down a sign telling the person what they should do. The person doesn't notice the sign, they're too busy watching the path. God tries again with a bigger sign. Again, it goes unnoticed. God makes a billboard with neon lights and places it in the middle of the road. The person walks around it and keeps plodding on. God finally gives up and smacks the person upside the head, pointing them in the direction He wants them to go.
That would be me.
Sometimes the smacks are gentler, like "See? Told you I'm looking after you". I told you about my numbness that started up badly yesterday. This afternoon my sister surprised me and came over to help me pack. Spending any time at all with her makes my day, she's my other half. We were born fourteen months apart and when we were little we had our own language. My brother's always been the classic older sibling and I've always had the idolizing baby sister syndrome. I love my family, they're everything to me. It was really good she came to help because my numbness and tremors were so bad I couldn't take things off hangers or put them back on. My sister hadn't seen my tremors before, she'd only heard about them. I think it freaked her out a little to see it, and I don't blame her. They freak me out too.
My arms have been numb all day, so I was mostly used to it around dinner time. When I stood up I lost all feeling in my legs. Mom came and helped me upstairs. I still can't feel my legs or my arms. In a way I'm glad. I want the people at Cleveland Clinic to see how bad everything can get. I want them to see how scared I am and how drastic the symptoms are. Maybe by not being calm and collected they'll be more willing to take my words at face value right off the bat, instead of waiting for seven tests first? Stranger things have happened. I'll tell you this for certain though, I will not end up in a wheelchair. I fought it off once and I will fight it off again as many times as necessary. Anyone who suggests otherwise gets to see the real meaning of a Scottish temper. My two clans are Leslie and MacIntosh. Their mottos: "Grip Fast" and "Touch Not the Cat Without a Glove". Fitting, don't you think?
Saturday, September 28, 2013
Inappropriate Reactions
I completely understand that my reactions are as all over the place as my symptoms. I have a twisted sense of humor, and there are times I enjoy pushing the boundaries just to see how people will react. I think if it's socially acceptable for a doctor to treat a patient the way I've been treated, it's perfectly acceptable for me to point out exactly how full of shit they are. On one hand, I hope there are people out there who've been through similar experiences and understand where I'm coming from. On the other hand, I never want anyone to have to go through anything like this. I have no problem whatsoever being the loud smartass if it means people wake up. There's no reason why someone living in America should have to fly across the country to find a doctor willing to treat based on symptoms who won't run away from a challenge. If me shouting and cussing and arguing and fighting makes the diagnostic process that much easier for people with lifelong illnesses then I will do it happily. Getting diagnosed with a long term illness at any age is hard; you taste your own mortality for the first time. It makes the term "forever" that much stronger, more concrete. More real. I read on an FDA announcement that the diagnostic process for Sjogren's has gone from an average of seven years down to four. And this is supposed to be a good thing? How many people have the time, money or will to fight that long for a diagnosis without giving up? Hunting for someone to listen, to take you seriously when you know something is seriously wrong with your body. If enough people tell you it's in your head, you'll start to doubt your own conviction. And because the insurance and pharmaceutical companies own everything in the US the doctors have to have blood work or a biopsy for treatment to get approved. The system is so screwed up. Medicine for profit is a joke. Doctors so often tack the easiest name on it, so wrong diagnoses happen far too often. It's disgusting. It needs to change. If the doctors won't step up and own their profession it's up to the patients. Get loud. Stand up and fight for yourself, no one else will.
I picked up the last of the records I needed for my trip to Cleveland Clinic today. One of them was the gastric-emptying study that diagnosed my Gastroparesis. All we'd heard at the time was the diagnosis from my doctor's nurse via phone. The actual results were interesting. I explained the test a little in my first post, but the gist of it is that you eat scrambled eggs that have radioactive something in them so they can track the progress through your stomach. According to the report, the average time for the stomach to digest the scrambled eggs is less than 85 minutes. After 323 minutes they ended the exam because my stomach still hadn't digested anything. From what I understand, the stomach has three main muscle groups, the top, middle and bottom. When you're eating the top is open and the bottom closed. When you're full the top closes, the bottom opens and the middle contracts. (Obviously not a technical description, sorry.) With Gastroparesis the stomach doesn't do the normal digesting process. No wonder I got so sick, drinking that much coffee and it all just sitting in my stomach. Blech. Sorry if I just grossed anyone out, I definitely just grossed myself out.
I was reading the report walking back to the entrance and kind of cackled when I saw the numbers. I got a seriously angry look from a doctor. He calmed down when I told him, "It's ok, this is my report. I'm allowed to laugh at how ridiculous my body is". The concierge guy heard and laughed too. Glad my sarcasm provides amusement for someone other than me. Can I please find a doctor that gets this angry and protective over me? That'd be sweet. Just saying.
When I tell doctors my symptoms jump all over the place I get this look of "That's nice dear" and almost feel like they're resisting the urge to pat me kindly on the head. It's a good thing they don't, I don't think punching the doctor would earn me any useful treatment plans. Even if it'd make me feel better. Would it be too much to sit in an office and threaten to break something every hour they don't find anything useful? I'd probably get escorted off the premise. What I really want to do when this is all over is go to the doctor that told me it was a confidence issue, hand him the diagnosis and tell him to look me in the eye and admit that he fucked up. Public shaming is also an option. One of my best friends had a brilliant idea. Acting agents only get paid if their clients get hired and paid. How about doctors only get paid if their patients get better? It makes perfect sense to me. Insurance companies will only approve physical therapy if there's noticeable improvement. Doctors should be held equally accountable for their work, in my mind.
When doctors tell me, "Well your ______ [insert medical exam here] was all over the place. It wasn't stable the way it's supposed to be" they probably expect some kind of surprised reaction. At this point I just laugh. And then get disapproving looks. I'm supposed to, what, cry? Beg for their merciful help? I know they're all over the place. I figured that much out on my own, funnily enough. When I go from shaking under two fleece blankets and two down comforters in a onesie (and I wonder why I'm still single) to feeling like I'm going to pass out from the heat and then back to freezing cold in the space of five minutes I'm pretty sure it's not normal. Or when my arm, stomach, legs, hands and chest all have their own temperatures. And since my darling body doesn't sweat it's all just baking. No, sir, I had no idea my symptoms were atypical. I needed you to explain my body to me, thank you ever so much. I've just been going to every specialist I can find because wasting time and money is so gratifying. Tasers are fun. As are morons who can't find the veins to draw the blood work, even after I've told them which needle to use, at which location. Instead of telling me how royally screwed my body is, perhaps we could move on to the part of the conversation involving some kind of treatment plan? Maybe? And by treatment, I don't mean suggesting I wear socks when my feet turn purple and go numb. How much am I paying you for this visit again?
I'm joining an MMA gym when this is over so I can resist the urge to smack idiots upside the head.
Today the weird numbness and tremor-y symptoms came back in full force. They've been off and on for a couple weeks now but I stood up to pet my mom's dog and both legs went numb. It's a good thing I learned how to fall without hurting myself in dance classes. One of the most useful lessons I've ever had; I recommend it to anyone as skilled at tripping over their own feet as I am. So mom helped me get upstairs and once I laid down my legs felt fine but everything from the waist up went numb. And the second my head hit the pillow I had one of those sleeps where you literally pass out for about four hours. I woke up with my right arm having tremors.
On the bright side, getting ready for bed with numb arms and hands is a funny experience. My brush went flying three times and I knocked a cup off the counter seven times. The whole time I in there I was humming "I Feel Pretty" from West Side Story.
Musicals teach us so many useful lessons in life. Truly. When I finally have a treatment plan my reaction will be the opening scene of The Sound of Music. Once I find a pretty grassy hilltop with my mountains in the background. And a nun's habit. And a pretty little creek I can hopefully avoid falling into while I dance around on the stones.
Wednesday, September 25, 2013
Chaos.
Well we got the report from the EEG specialists, and the one word they had to describe my brain activity was "chaos". Which is really close to what doctors have said about my heart, my endocrine system and my autonomic system. We already knew my immune system is a homicidal b*tch, but she's actually been behaving relatively calmly with this mess. Unless it was all triggered by one of my auto immune diseases (highly likely) in which case I'm going on immune suppressants for life.
Basically what this new report says is that in the brain you have two "Insula" (Insular lobes, Insular cortex are two other terms for it) tucked around the temporal lobe, and these regulate autonomic responses. Like with many sections of the brain the right and the left control different things, and typically one side is dominate. (All of this is what I was told. I am not a doctor, a nurse, a PAC, a physical therapist or in school for any of the above professions. If the information is wrong it's my interpretation and my mistake.) With my brain both sides are active and messing things up. There was a section on my EEG that was supposed to stay stable (started at 5.5) and jumped all over the place.
Do I really understand any of this? No way in Hell.
My doctor's interpretation of everything was a couple possibilities (as ever). First, sometimes the brain acts like this when there's a tumor in the pituitary gland. They're really hard to diagnose, but rarely cancerous. This said, they still have to be removed. Through the nose. Egyptian style. If this happens I'm making an Egyptian playlist. I'm open to song suggestions.
Also, as my cousin and I were joking about, if I end up having brain surgery as well as spine surgery, the next time someone complains to me about a cold or mono they will have something thrown at them. I have good aim. You've been warned.
A pituitary tumor would explain all the endocrine symptoms. One of the other possibilities is something else endocrine that's been missed; since there are literally reams of tests for the endocrine system that HAVEN'T been done honestly anything's game. It could be anything and speculating would just lead to hyperventilating and freaking out after reading pages of horror stories. I'll pass.
The other option (so far..) is something autonomic or neurological that somehow nine neurospecialists missed or didn't follow up on. Would I be surprised? No.
Essentially, we don't have any new information, and we won't until Monday at Cleveland. I'm trying to keep a sense of humor about this, and the love and encouragement I've been getting from everyone means more than you could ever know. I've stopped counting the odds against all these insane diagnoses, there's no point. I'm in the billions. Of billions. Every doctor I've seen (that listens) has told me they've never seen anyone with this many auto immune diseases, even though the diagnoses were done by biopsies and can't be refuted. Having something like this happen to you is the most humbling, terrifying, isolating experience. You lose the ability, and the want to judge people. You can never know what horrors they've seen, faced, fought back, overcome. I've seen the purest courage and resilience in the eyes of a three year old. My point is be kind. Enjoy your life. Love those your heart tells you to love, not who society says is "appropriate". Society is full of shit. Be yourself, because at any second of any day you could lose it all.
Live without regrets. If you've screwed up, find the courage to admit it. Live so that if, God forbid, your life is taken from you, you can look back without what-ifs clouding every experience.
Basically what this new report says is that in the brain you have two "Insula" (Insular lobes, Insular cortex are two other terms for it) tucked around the temporal lobe, and these regulate autonomic responses. Like with many sections of the brain the right and the left control different things, and typically one side is dominate. (All of this is what I was told. I am not a doctor, a nurse, a PAC, a physical therapist or in school for any of the above professions. If the information is wrong it's my interpretation and my mistake.) With my brain both sides are active and messing things up. There was a section on my EEG that was supposed to stay stable (started at 5.5) and jumped all over the place.
Do I really understand any of this? No way in Hell.
My doctor's interpretation of everything was a couple possibilities (as ever). First, sometimes the brain acts like this when there's a tumor in the pituitary gland. They're really hard to diagnose, but rarely cancerous. This said, they still have to be removed. Through the nose. Egyptian style. If this happens I'm making an Egyptian playlist. I'm open to song suggestions.
Also, as my cousin and I were joking about, if I end up having brain surgery as well as spine surgery, the next time someone complains to me about a cold or mono they will have something thrown at them. I have good aim. You've been warned.
A pituitary tumor would explain all the endocrine symptoms. One of the other possibilities is something else endocrine that's been missed; since there are literally reams of tests for the endocrine system that HAVEN'T been done honestly anything's game. It could be anything and speculating would just lead to hyperventilating and freaking out after reading pages of horror stories. I'll pass.
The other option (so far..) is something autonomic or neurological that somehow nine neurospecialists missed or didn't follow up on. Would I be surprised? No.
Essentially, we don't have any new information, and we won't until Monday at Cleveland. I'm trying to keep a sense of humor about this, and the love and encouragement I've been getting from everyone means more than you could ever know. I've stopped counting the odds against all these insane diagnoses, there's no point. I'm in the billions. Of billions. Every doctor I've seen (that listens) has told me they've never seen anyone with this many auto immune diseases, even though the diagnoses were done by biopsies and can't be refuted. Having something like this happen to you is the most humbling, terrifying, isolating experience. You lose the ability, and the want to judge people. You can never know what horrors they've seen, faced, fought back, overcome. I've seen the purest courage and resilience in the eyes of a three year old. My point is be kind. Enjoy your life. Love those your heart tells you to love, not who society says is "appropriate". Society is full of shit. Be yourself, because at any second of any day you could lose it all.
Live without regrets. If you've screwed up, find the courage to admit it. Live so that if, God forbid, your life is taken from you, you can look back without what-ifs clouding every experience.
Saturday, September 21, 2013
Distractions.
One of the hardest symptoms to deal with is my sleep disruption. I go days without sleeping and when I finally pass out the sleep isn't restful at all. This leads to a lot of Youtube browsing and reading up as much as I can about Dysautonomia.
The former reminds me how much I love the entertainment industry. Professional dance is out of the picture, in regards to dancing in a company, but the industry is literally exploding right now. Sound and music have always been one of my passions in life; my brother and sister and I were all heavily involved in music growing up. We sang in three part harmonies; nerdy sometimes, yes, but it made Christmas time so much fun! I was in audition only choirs from the age of nine all through high school. We all sang, played the piano and we each had our own second instrument. I still remember my brother's tuba case being bigger than me (I've never been a tall person. I was a preemie baby and I don't think I've grown a centimeter since the eight grade.). Another thing I found a love for was the changes in movement technology. While I was still a Dance major we worked with movement technology, and it's absolutely fascinating to me. One night when I couldn't sleep I watched a thing on the making of the last Harry Potter (told you I'm a nerd.) and I loved how they did the scene with the seven Harry's. My own experience with this work is really limited, but I'd love to learn more about how it all works. Even though I know I have a lot of work to do before I'm well enough to sink my teeth into starting a new career it helps that I have something to look forward to. Entertaining has always been a passion of mine and working in an industry where I can work with everything that interests me, and that is constantly shifting and evolving sounds like enough of a challenge to keep me happy. My not so inner nerd can play with historical events, writing, photography, sound, music, movement choreography and technology. It's something to keep my mind off of anything health related.
I just got a book called "POTS Together We Stand, Riding the Waves of Dysautonomia". I'm usually not at all interested in books that have encouraging little snippets from people who haven't had a sick day in their lives. This one's different. It addresses every aspect of the disease from people who have it and different stages of life; teen years, going to college, traveling with POTS, moms' points of view, that kind of thing. I couldn't sleep so I was reading and I want to share a quote just because it made me smile. This is from Chapter 8, discussing Dysautonomia and grief, written by Michelle Roger.
"I hate those saccharine sweet lines like 'When life gives you lemonade'. Do they realize the steps in making lemonade? First, get the energy to get up out of bed. Second, get the energy to care that you have to make lemonade. Third, try and find a recipe book. Fourth, get your brain together to remember why you have the recipe book. Fifth, grab a coffee to get your brain going. Sixth, forget the reason you had the recipe book out again and tidy up the kitchen. Seventh, remember something about lemons. Eighth, remember obscure fact that Liz Lemon is a character on 30 Rock, and sit down to watch taped program forgetting lemonade completely."
It reminded me of a conversation I had with a friend at the law firm I worked at. He asked me, "How do you get by when life keeps chucking lemons at you?" My response? "Learn how to dodge."
The former reminds me how much I love the entertainment industry. Professional dance is out of the picture, in regards to dancing in a company, but the industry is literally exploding right now. Sound and music have always been one of my passions in life; my brother and sister and I were all heavily involved in music growing up. We sang in three part harmonies; nerdy sometimes, yes, but it made Christmas time so much fun! I was in audition only choirs from the age of nine all through high school. We all sang, played the piano and we each had our own second instrument. I still remember my brother's tuba case being bigger than me (I've never been a tall person. I was a preemie baby and I don't think I've grown a centimeter since the eight grade.). Another thing I found a love for was the changes in movement technology. While I was still a Dance major we worked with movement technology, and it's absolutely fascinating to me. One night when I couldn't sleep I watched a thing on the making of the last Harry Potter (told you I'm a nerd.) and I loved how they did the scene with the seven Harry's. My own experience with this work is really limited, but I'd love to learn more about how it all works. Even though I know I have a lot of work to do before I'm well enough to sink my teeth into starting a new career it helps that I have something to look forward to. Entertaining has always been a passion of mine and working in an industry where I can work with everything that interests me, and that is constantly shifting and evolving sounds like enough of a challenge to keep me happy. My not so inner nerd can play with historical events, writing, photography, sound, music, movement choreography and technology. It's something to keep my mind off of anything health related.
I just got a book called "POTS Together We Stand, Riding the Waves of Dysautonomia". I'm usually not at all interested in books that have encouraging little snippets from people who haven't had a sick day in their lives. This one's different. It addresses every aspect of the disease from people who have it and different stages of life; teen years, going to college, traveling with POTS, moms' points of view, that kind of thing. I couldn't sleep so I was reading and I want to share a quote just because it made me smile. This is from Chapter 8, discussing Dysautonomia and grief, written by Michelle Roger.
"I hate those saccharine sweet lines like 'When life gives you lemonade'. Do they realize the steps in making lemonade? First, get the energy to get up out of bed. Second, get the energy to care that you have to make lemonade. Third, try and find a recipe book. Fourth, get your brain together to remember why you have the recipe book. Fifth, grab a coffee to get your brain going. Sixth, forget the reason you had the recipe book out again and tidy up the kitchen. Seventh, remember something about lemons. Eighth, remember obscure fact that Liz Lemon is a character on 30 Rock, and sit down to watch taped program forgetting lemonade completely."
It reminded me of a conversation I had with a friend at the law firm I worked at. He asked me, "How do you get by when life keeps chucking lemons at you?" My response? "Learn how to dodge."
Thursday, September 19, 2013
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.
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.
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