So in my last post I wrote about finally being diagnosed with Ehlers Danlos Syndrome (EDS.) Since that diagnosis I've collected a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), on top of the Raynaud's.
EDS is a connective tissue disorder. Anything and everything with collagen can be affected, depending on the type of EDS you have. The three most common types are Hypermobile, Classical, and Vascular. Vascular is considered the most "severe" since it usually has a life expectancy in the 40s and you can have organ ruptures (including the heart.) Classical can have signs and symptoms of both Hypermobile and Vascular. Hypermobile is considered to be the most painful with a higher joint issue. I was officially diagnosed with Hypermobile with Classical tendencies. My skin itself shows signs of either. The reason that it is hard to diagnose is Hypermobile isn't linked to specific genes yet, and Classical only is linked 50 percent of the time. Right now I am in the middle of waiting on genetic testing though to make sure I don't have Vascular type. The good thing, for some parts, is that Vascular usually doesn't have the hypermobile joints as the Hypermobile type, so most likely I'm not. But we are checking to be sure. My main symptoms of the EDS side: joint hypermobility in everything but my elbows (although my hands are getting stiffer every month), my scars both keloid and become cigarette paper scars, I have lots of sprains, strains, and pull tendons, healing time on surgeries and those sprains are a lot longer than normal, stomach issues, and a few other things that coincide with my other disorders.
The Raynaud's is the easiest to describe. Basically my body can't equalize temperature correctly. Due to everything else, my heater in my body and my air conditioning is defective. I always say my thermostat is broken. With the Raynaud's I can't stay warm, get warm when I'm cold, and I always suck heat from other people. My hands often turn purple/blue and then white, like I'm getting frost bit. When they warm up they turn red and feel like they are on fire. My ears like to turn red randomly, which is more annoying than anything else. My feet are usually purple, as I prefer them to be cold than hot. Although when I take a shower they usually look almost black. (Part of this is because of blood pooling too which has caused discoloration of my lower legs and they swell a lot if I'm sitting in a chair/car or standing for a long period of time.) This next part will be slightly graphic. The worst part of the Raynaud's is called a vasospasm and I get it on my breasts. My nipples get hard, turn white, and are extremely tender. This usually happens when my body as a whole gets too cold or when I'm stressing a lot. Pressure helps, but overall pressure, like the feeling of a bra, hurts, like a searing/burning pain. It's straight up agony. I can deal with the rest of the Raynaud's, but that part sucks.
POTS, not the drug and not the opposite of pans. (Although there is a disorder PANS, but that is a whole 'nother story.) Basically anytime I move, get sick, get stressed my autonomic nervous system doesn't act normal. This affects my thermostat too, but a lot more than that. My heart rate increases, my chest gets tight, it's hard to breathe, I feel dizzy, lightheaded, like I'm going to pass out, usually my stomach starts cramping, and I start feeling the like the world is in slow motion and nothing makes sense. Afterward, assuming I don't pass out, I get super tired and confused. This can make me sluggish for a few days afterward. A few times I've had issues where my heart rate dropped too low (we are playing with the adjustment of my meds right now) and I had trouble staying awake and remembering to breathe. Usually with the POTS when I get up my heart rate jumps (30+ is the minimum for a diagnosis) anywhere from 20-50 beats a minute higher. On my meds my resting heart rate is in the mid 60s, without resting is in the 80s, and when I'm sick the resting is high 90s. You can see where a jump in my heart rate can make a huge different. When I was first diagnoses I failed my stress test 3 minutes in, they diagnosed my as POTS with inappropriate sinus tachycardia as my heart rate was 173 and I started fuzzing out. **Fuzzing out is my term for when my eyes go into a dark tunnel vision like sensation, my ears thump to my heart beat and I can't hear anything else, and my legs get weak.)
Just to help explain what I go through beside the things above... I live everyday in pain. I try to ignore it as best as I can. If I complain that I hurt, it's because it is a really bad day. I never sleep well. I have a sleep study next month to hopefully help somehow. I've always had trouble going to sleep and staying asleep. I used to live on naps and naps alone. Now if I don't sleep I drag for days. I am always tired. Sometimes I'm so tired I can't even think, but there is always some degree of tired. I get sick most times that I eat. I take a handful of meds daily to make sure that my stomach doesn't cramp up when I eat, no matter what I eat. I usually spend every day nauseous to some degree. The really bad episodes of it I feel like I can't move without puking. I couldn't live without those meds and mints. Guess I'm not living long in the zombie apocalypse. I also have to be careful when I do daily tasks, like walking. I easily roll ankles and trip. I never know how close I am to walls and end up hitting my hands a lot on walls. I can't walk straight, almost ever.
My biggest thing for all this is a two part struggle. I constantly fear that people don't believe my, my disorders, my struggles every day. And I fear that people judge me for my weakness and that one day I'll have to depend on others. With those two things, I try to always hide my struggles, pretend I'm just a normal fat kid, and push myself too hard. But I'm learning to be open and honest. My friends and family love me for me and I need to stop trying to hide it. I've been blessed with amazing people in my life who are there for me. Some haven't been there for me, and they are no longer a part of my life. I am trying to take control of my body, my life, my disorders. Now that I have the knowledge, I'm ready. Before I was ready to get healthy to do derby. I can't do derby anymore. Too high risk of damage that won't heal for me. So for now I'm a derby lover, that is going to try to get healthy for me and myself. I can do this. I hope.
http://ehlers-danlos.com/
http://www.dysautonomiainternational.org/page.php?ID=30
Wednesday, November 30, 2016
Tuesday, November 22, 2016
I'm a what?!
I finally have a diagnosis. Well, not just one. I am starting a collection of alphabet letters to see how many I can get. I'll start from the beginning of my medical story.
When I was a kid I knew there had to be something different with me. I was never able to do everything that everyone else did even when I tried my hardest. For physical things, I eventually stopped trying. I was the life of show and tell, I could bend extra and do things that others couldn't. They were "party tricks." And every trick I do damages my body even more. I had days where I was sick to my stomach, nauseous, stomach cramps, dizzy, lightheaded, or felt like I would pass out. Everytime I made a list and took to my doctor it was dismissed as either related to my period (yay being a female...not), my blood pressure got to low (as it just happens), or I was sick with a cold. Then there was the feeling that you weren't believed for one reason or another. As I got older the excuses from doctors for not finding things were that I was fat/overweight (and I would get another damn lecture) or I couldn't possibly have the issues I said I did.
At 13 my back started hurting and I couldn't find relief. An xray showed that I had osteoarthritis in my spine starting from the base of my head down to between my shoulder blades. I was sent to physical therapy to strengthen my back and help me deal with the pain. The PT was a nice guy, very understanding. He examined me and told me I was hypermobile in every joint and it would continue to be bother be, but I'll be fine. I was so close that day to a diagnosis. I continued to have issues spraining ankles, tearing tendons, and having PT.
Fast forward to college.
I would get sick for a few months were I dreaded eating and I would get sick everytime. Then I would have a few months of being okay. I knew that if I made it through the sick times it would get better and I would be fine. That ended up how I treated everything, if I wait, it'll get better.
I went out with a few of my friends to a concert in Charlotte, NC. We saw Saosin, UnderOath, and Devil Wears Prada. It was a great concert. I moshed for the first time. And that started the downhill of my shoulder. I used to like to stand with my arms crosses behind my back, holding my elbows. I was standing like this waiting for the concert. It was hot and I was starting to feel a little...overwhelmed? Not sure that is the right feeling, but we will go with it. So the first band starts and everyone rushed the stage. I went from being 10-15 people from stage to being 3. The crowd moved to the right then the left, back, and then forward. It was fun and a new experience. Honestly I loved it and hated it. There was no moving, you were a product of the crowd. You had no control. Then we fell. The entire right side of the mosh crowd fell to the floor. My arms where still behind my back and people where still moshing. A couple guys built a wall in front of us with themselves and then pulled us up one at a time. My right arm was pulled and I was able to stand up. I worked my way out of the crowd, hot, tired, and my arm slightly numb. I got to the back with my other friends and just chilled. The next morning I was sore, but I figured it was just from doing so much. We went out to breakfast and I had a hard time lifting my drink with my right arm. That issues continued on and off for months before I went to the doctor. I actually went to the doctor for another issue and as a side said my shoulder hurt. Two rounds of PT, lots of wearing a sling, I had what would be my first shoulder surgery. I had torn my right labrum. I'm assuming it came from that fall at the concert, but it could easily have come from years of softball. They put in two anchors, I did more PT and went on my way. A few years later I ended up at the ER for what I was told was gastritis, but ended up a few years later being my gallbladder being an asshole. I had that removed. I also had some issues with blood clots (thankfully all superficial.) It became a running joke that on holidays it was time to go to the ER. And sadly that lasted a long time. We always joke that it was a new year, I would have a new problem. I probably had at least 2-3 ER visits a year for something, plus 2-3 doctor appointments a month. Little did I know that would be small amounts.
I was so lucky that I found a great doctor. She believes me when I say something hurts, she wants to help me find an answer, and she doesn't give me lectures on my weight. She offers help, but I mean come on, I know I'm fat. I don't need to be told. She sent me to several specialists, some were helpful, some like the Vein Specialists in Asheville were assholes. The doctor there told me I was fat, gave me a lecture, and then told me I would be fine if I lost weight. Definitely not a doctor I ever back to. I was then sent to a Geneticist. I had a feeling at that point that I might have a certain disorder. As soon as I was looked at it was confirmed, I had Ehlers-Danlos Syndrome. EDS is an invisible illness that causes a lot of issues. In short (as I will write a blog post just on EDS itself) everything in my body with collagen can be faulty. From my organs, my skin, my eyes, my joints, everything. Absolutely Everything. Great. I have a name to the disorder but now what? The next adventure would be learning this "zebra" disorder and then what else is wrong with me.
Zebra disorders are stated as being Zebras because doctors are taught when they hear hoof beats to think about horses, not the rare things like Zebras. So Hi, I'm a Zebra!
When I was a kid I knew there had to be something different with me. I was never able to do everything that everyone else did even when I tried my hardest. For physical things, I eventually stopped trying. I was the life of show and tell, I could bend extra and do things that others couldn't. They were "party tricks." And every trick I do damages my body even more. I had days where I was sick to my stomach, nauseous, stomach cramps, dizzy, lightheaded, or felt like I would pass out. Everytime I made a list and took to my doctor it was dismissed as either related to my period (yay being a female...not), my blood pressure got to low (as it just happens), or I was sick with a cold. Then there was the feeling that you weren't believed for one reason or another. As I got older the excuses from doctors for not finding things were that I was fat/overweight (and I would get another damn lecture) or I couldn't possibly have the issues I said I did.
At 13 my back started hurting and I couldn't find relief. An xray showed that I had osteoarthritis in my spine starting from the base of my head down to between my shoulder blades. I was sent to physical therapy to strengthen my back and help me deal with the pain. The PT was a nice guy, very understanding. He examined me and told me I was hypermobile in every joint and it would continue to be bother be, but I'll be fine. I was so close that day to a diagnosis. I continued to have issues spraining ankles, tearing tendons, and having PT.
Fast forward to college.
I would get sick for a few months were I dreaded eating and I would get sick everytime. Then I would have a few months of being okay. I knew that if I made it through the sick times it would get better and I would be fine. That ended up how I treated everything, if I wait, it'll get better.
I went out with a few of my friends to a concert in Charlotte, NC. We saw Saosin, UnderOath, and Devil Wears Prada. It was a great concert. I moshed for the first time. And that started the downhill of my shoulder. I used to like to stand with my arms crosses behind my back, holding my elbows. I was standing like this waiting for the concert. It was hot and I was starting to feel a little...overwhelmed? Not sure that is the right feeling, but we will go with it. So the first band starts and everyone rushed the stage. I went from being 10-15 people from stage to being 3. The crowd moved to the right then the left, back, and then forward. It was fun and a new experience. Honestly I loved it and hated it. There was no moving, you were a product of the crowd. You had no control. Then we fell. The entire right side of the mosh crowd fell to the floor. My arms where still behind my back and people where still moshing. A couple guys built a wall in front of us with themselves and then pulled us up one at a time. My right arm was pulled and I was able to stand up. I worked my way out of the crowd, hot, tired, and my arm slightly numb. I got to the back with my other friends and just chilled. The next morning I was sore, but I figured it was just from doing so much. We went out to breakfast and I had a hard time lifting my drink with my right arm. That issues continued on and off for months before I went to the doctor. I actually went to the doctor for another issue and as a side said my shoulder hurt. Two rounds of PT, lots of wearing a sling, I had what would be my first shoulder surgery. I had torn my right labrum. I'm assuming it came from that fall at the concert, but it could easily have come from years of softball. They put in two anchors, I did more PT and went on my way. A few years later I ended up at the ER for what I was told was gastritis, but ended up a few years later being my gallbladder being an asshole. I had that removed. I also had some issues with blood clots (thankfully all superficial.) It became a running joke that on holidays it was time to go to the ER. And sadly that lasted a long time. We always joke that it was a new year, I would have a new problem. I probably had at least 2-3 ER visits a year for something, plus 2-3 doctor appointments a month. Little did I know that would be small amounts.
I was so lucky that I found a great doctor. She believes me when I say something hurts, she wants to help me find an answer, and she doesn't give me lectures on my weight. She offers help, but I mean come on, I know I'm fat. I don't need to be told. She sent me to several specialists, some were helpful, some like the Vein Specialists in Asheville were assholes. The doctor there told me I was fat, gave me a lecture, and then told me I would be fine if I lost weight. Definitely not a doctor I ever back to. I was then sent to a Geneticist. I had a feeling at that point that I might have a certain disorder. As soon as I was looked at it was confirmed, I had Ehlers-Danlos Syndrome. EDS is an invisible illness that causes a lot of issues. In short (as I will write a blog post just on EDS itself) everything in my body with collagen can be faulty. From my organs, my skin, my eyes, my joints, everything. Absolutely Everything. Great. I have a name to the disorder but now what? The next adventure would be learning this "zebra" disorder and then what else is wrong with me.
Zebra disorders are stated as being Zebras because doctors are taught when they hear hoof beats to think about horses, not the rare things like Zebras. So Hi, I'm a Zebra!
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