So I'm at the tail end of my promised deadline, sorry! I'll start trying to post more regularly now that I'm home.
It's so nice to be back to where there's gluten free food everywhere! Seriously. Maybe if we'd rented a car and explored Cleveland it would've been easier but man, I'm glad we brought a lot of gf granola bars. They got old fast, but there weren't a ton of safe options. And since when do airline complimentary peanuts have wheat in them?!? Come on people!
Anyways.
Last Thursday morning, I got a call from the receptionist of my Neurologist, who'd been trying to find a way to get me in to the Cardiac unit before we left so we wouldn't have to fly back. She pulled a few favors and said they could get me in Friday afternoon. We changed our flights and that was it. Thank God for our receptionist! How many people are willing to call around and pull favors for someone they met once? I'm so blown away by the kindness of everyone at Cleveland Clinic. So for Friday my itinerary was the sauna test, rheumatism consult, heart test and then finish up with my Neuro team.
The sauna test was, interesting. First of all, you get to put on a paper, disposable bikini (they have something else for guys. I hope.) and whoever came up with the term "one size fits all" is a liar. I had the "small" bikini and the top covered from my shoulders to my hip bones, tied as high as it could go. The bottoms were pretty much bloomers. Sexy, let me tell you. I took pictures to show my doctors, and yes they're deleted. They will never again see the light of day. The next step is to lay down on a gurney that's covered with a tarp type thing, so the nurse can cover you head to toe in this gold ish orange ish powder that literally looks like the world's worst self tanner. The idea is if your skin reacts to external heat the way it should the powder will turn purple. After you're covered with the powder and it's been rubbed into your skin to make sure it gets an accurate reading, they put a thermostat in your mouth to measure internal temperature. THEN to make it even more fun they play some luau music from the fifties before they put you into the sauna. Which goes up to a hundred and seventeen degrees.
This is a special level of Hell Dante forgot to mention.
The test is supposed to run an hour, but twenty-seven minutes in I started having spotty vision and felt like I was going to pass out, so they let me out. It took another 20 minutes before I was ready to try standing up. The nurse was really nice about it, she said no one with POTS lasts the full hour in the test. The only patient who's ever liked it was an eighty-seven year old man, apparently he thought it was great. My chest and stomach turned purple, so did the backs of my legs, areas on my hands and my knees. Everything else stayed orange (another time I got a surprised look when I laughed). I guess this means my Dysautonomia affects me distally? No idea what that means. Explains why my arms and legs are always cold though. It meant something to my doctors, that's all I ask.
They let you shower all the powder stuff off, which is wonderful, but since my skin is super sensitive of course it turned bright red and rashed out in places. Naturally the nurse for my rheumatism consult had to be a tall, seriously attractive guy I wanted to propose to on the spot. Naturally. I also had two different bruises from where the lab tried to get my blood. I swear, hot nurse man, I did NOT just escape from the psych ward. God. I'm ridiculous.
My new rheumatism doctor was fabulous. She got my full auto immune history, did an exam and said it looked more like Undifferentiated Connective Tissue disease. It took me a couple times to say it right. I guess what it is, is a benign form of Lupus. She said there's a lot of misinformation out about it. UCT is not an "in between" disease; it does not "turn into" Lupus later in life, and it will not affect my organs. Its symptoms are severe dry eye and dry mouth, some arthritis and Raynaud's. Sounds right. She said that UCT hides in an area of the cell called the ENA, and so other forms of auto immune preliminary blood work can easily miss it. This is the part of the consult where mom and I were smiling and nodding.
On a happy note, she said she specifically tells patients to do a form of exercise they love so they do it regularly. Once my heart is in check it's back to dance I go. Yessss! She does flamenco, which is one of the hardest, most intricate and gorgeous forms of dance I've ever seen. Serious dance envy.
So next was the heart consult and exam. First came explaining every heart test I'd had done, all my history (again), and my exercise history. Something I found really interesting (and slightly creepy) is that I fit the demographic for Dysautonomia and POTS perfectly (which is why I haven't heard this til now...? Sure, makes perfect sense.). I was told that typically they see dancers or gymnasts and most often they're women in my age group (20's). They see people who have been highly active from a very early age, and they say dance and gymnastics in specific because of the Olympic hours they put in from early on. I don't really understand this, you'd think that someone who's been conditioning for forever would have a really strong heart. But I'm not a doctor. The cardiac team I saw said that something happens, they don't know what and for these patients the autonomic nervous system crashes. Most commonly it's the heart that acts up, but there are also patients that have other things like the stomach act up as well. They're doing research right now to figure out exactly what it is that happens to trigger it. Hopefully if they can figure it out, they'll be able to prevent it or at least detect it earlier. Or in more than one location. Possibly an area where there are university hospitals all around. Like Denver. Just saying. I found out that the Cleveland Clinic is world renown for their heart department. They're the only ones doing this research, and they have summits regularly where people come from all over the world. This is insane. Why in God's name is there ONE place that people actually know what they're doing with the autonomic nervous system??
We met one of my mom's high school friends and her husband for dinner on Wednesday, which was so nice. It was really fun to see my mom interact with her old friend, who was the sweetest thing. Her husband, who I really liked too, asked, "Why here? Why did you have to come from Colorado to here to get the right treatment? What makes our hospital so special?" and I didn't have a good answer. I don't know. I wish I did. I don't have the slightest clue why some doctors are patient-oriented and some aren't. It's sad. And shameful.
After they got all my information, they asked what my physical activity level is. Can I run? No. Can I do stairs? Nope. The only thing I could do was walk on a treadmill. So that's what we did. They got my blood pressure as a baseline and hooked up cardiac monitors all over my chest. Throughout the exam, one of the specialists would be right by me to catch me if I fell and to check my blood pressure at intervals. Every two minutes the speed and incline would go up a little. Just walking, my heart got up to 171 beats. I started having spotty vision and got really dizzy so they had me stop. You have to understand, I'm used to being active. I've been active all of my life and I hate how weak my body is right now. I hate it and I'm afraid of it. I fully understand exactly how much work I have to do to get back to even a normal level of fitness. Being able to walk a dog, go to the grocery store, drive, have a job without worrying that I'm going to pass out. It's hard not to get overwhelmed by all of this. All I can do is take it one step at a time. And not panic. Possibly get a punching bag. And a dart board.
My team brought me to an office while the Cardiologist crunched my numbers and came up with a physical therapy routine for me. It's about four months of training to get my Vegus nerve back to the way it's supposed to be. The Vegus nerve is what tells your heart to calm down, to get back to a resting rate. With Dysautonomia and POTS, the communication along the nerve isn't working. The rehab starts with me on a recumbent bike, going only for twenty minutes. Slowly I add a day a week, a couple minutes, move to sitting up on the bike, that kind of thing. I slowly work my way up to standing, then running. Hopefully. And then I can tackle retraining my body to do what I want it to do.
First of all, can any of you imagine what it feels like to have nine, NINE, neurologists tell you they can't figure it out, it's all stress, blah blah blah, and then to get a new diagnostic with every visit at one hospital. And to hear that in four months you should be seeing drastic improvement? The initial reaction usually involves crying because you're so pissed off you can't do anything else. Second comes the urge to run through the hallways screaming, "I WAS RIGHT BITCHES!!!", which may be viewed as slightly inappropriate. Third comes rage at losing that much of your life due to sheer effing stupidity. Then comes relief. And then they all circle around a little. Have any of you seen "What Happens in Vegas"? With Cameron Diaz and Ashton Kutcher? I want to send my best friend to the doctors that didn't do their jobs, have her junk punch them and say, "You know why!". It'll never happen but the visual makes me smile.
Before we left the Clinic for the last time, I made my mom stop. I found the shiniest penny in my wallet and went over to the first bridge we crossed to get to the Neurology building. Mom said, "If they're here, they don't need luck." I responded, "If most people coming here are coming from out of town or another country, they need all the luck and love they can get." I kissed the penny and dropped it in the fountain under the bridge. I hope I passed on some of the good luck, good karma, God's smiles, whatever you prefer to call it to the next patients who walk over that bridge. The Clinic answered all of my prayers. I hope and pray it does the same for others as well.
So now I have a plan, and I'll be getting a full report soon from the Clinic outlining everything. So will my primary. There are a couple ends we need to tie up, there's some blood work we're waiting on, and a couple tests we need to follow up on. But I have a diagnosis. Well, a couple but I'm not picky. And the weird purple and orange powder rash and cardiac monitor spots have finally gone away. I don't look diseased anymore, thankfully.
Of course since it's my road, there aren't bumps as much as craters. Crater one? The hospital my primary called to set up my Cardiac rehab doesn't want to follow the protocol from Cleveland and wants me to start in November. Of course. Not. I'm seeing my old physical therapist on Wednesday. "Hey! So no pressure, but you have to get my heart working again. And then get me back into dance. If not, I will not be held responsible for my actions of violence in neurological and cardiac units throughout Denver. Have fun." He's got broad shoulders. He can take it.
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