So since my last post I've literally just been waiting for my insurances to get their shit together and approve my cardiac therapy. Honestly, my insurance companies and I have been in a love-hate relationship since I got diagnosed with my first auto immune disease at thirteen. When I say that, I mean that I love them on the rare occasions they do their job without a battle and hate them the rest of the time. Throughout this whole new mess I've just been waiting for them to dig their heels in and be their typical pain in the ass selves. I was seriously hoping it wouldn't be when we finally started to see the light at the end of the tunnel, but I'm not surprised at all that this is how it played out.
I have two insurances, I'm really lucky in that. I have one through my dad and one through my stepdad. Obamacare saved my ass, no joke. My dad's insurance is the one I've been battling with since thirteen. If I have a script from a doctor for a valid diagnosis they're supposed to cover it fully. You'd think this would be pretty straight forward, right? Wrong. The first time my cardiac specialist called they tried getting away with saying cardiac therapy wasn't used for POTS, even though the script came from the hospital that's recognized internationally as the cardiac specialists to see. Since they outsource everything now the poor man was from India and had no medical knowledge, so arguing got us nowhere. With my secondary insurance, they cover treatment in network, and once my deductible has been met, they're supposed to pay for everything in full. First they said my cardiac center was out of network (wrong), then that my deductible hadn't been met (wrong again) and that they could only cover eighty percent (lies). The problem with all of these arguments, other than being dead wrong, is the fact that they've tried all of these tactics with me before. And lost. Every time. You'd think they'd learn their lesson. Last time my primary insurance tried something along these lines I had them send me a copy of my policy in writing. I highlighted all the sections they were violating, threw in copies of the laws they were violating as well and put in my attorney's card. I told them they could either do their job or I'd see them in court. They've been incredibly helpful since then up til now.
I think my cardiac specialist is used to dealing with this kind of nonsense too, though, because when I went in to see him today he outlined a plan for everyone to get involved to make them cover my therapy. I like this man. He said he'd try one more time calling both insurances, and I should call my team at the Cleveland Clinic. He also suggested having both my dad and my stepdad call Human Resources at their jobs and have them get in contact with the insurances to put more corporate pressure on them. I like this style. It's a lot more subtle than my last encounter but just as effective. And probably more gentle. And warm, fuzzy feeling inducing. At least it was for me, since it worked. I was ready to kill something or someone til Chris (cardiac specialist) called and said we were in business. I was waiting to get my blood drawn for a Thyroid lab and did a little happy victory dance and a fist pump in the waiting room. Got a really perturbed look from an elderly couple. It happens.
So because Chris is a genius I start cardiac therapy on Friday. And I'm positive I'll be getting all sorts of weird looks, seeing as I'm about thirty to forty years younger than everyone else in my group. When I dropped off paperwork earlier today the therapist asked me what my relation to Chris was or whom I was representing. I got an unbelieving look when I said, "I'm his patient...". Alright, just because I refuse to use a walker, a cane or a wheelchair and I use subtle ways to take care of my health does not make me any less sick! And since when do I look like a lawyer? I was wearing jeans, a tee shirt and my leather jacket. Not a suit. I didn't say anything, though. They'll see for themselves when I'm hooked up to the monitor on Friday. They can give me all the looks they want, I don't care. I'M STARTING THERAPY!!! Only a year and a half down the road. Maybe I can get back to work part time in a couple months, wouldn't that be great??
It's almost surreal to me to think that I'm actually starting the road to recovery. I understand how much I'll have to work at everything (including my patience) but I'm so relieved that I'm at this point. I'm so ready to get back into the arts and school and work. I'm so grateful that I was lucky enough to find doctors and therapists willing to fight for me after so many months of not getting anywhere. I'm making a list of people that are going to be getting special gifts this holiday season, even though there's no way I can ever put into words how much their kindness and support means to me. I just hope they understand. They're giving me my life back. There's no other way to put it. They deserve a medal. Or a trophy. Or a plaque. Maybe a statue? Might be a little creepy and hard to deliver. I'll think of something though, don't you worry.
Wednesday, October 23, 2013
Sunday, October 13, 2013
Dear Med School Graduates
(This is all a speech I would dearly love to give at a med school. Since the odds of that happening are next to none I'll post it here.)
So you've finished med school. You've survived the insane hours, the exams, the four years of no sleep. You should be proud of your work, honestly. Celebrate this.
You've got your shiny new lab coats. Now earn them. From here on out your patients are people. The human body doesn't read your textbook to make sure it falls in the right parameters. The numbers won't always add up. We don't have internal checklists.
Your patients are real. They're afraid, they're looking to you to figure this out. We've passed pressure a long time ago, so don't even bother bringing it up. This isn't about you, or the degrees you have mounted on the walls in pretty frames. From the moment your patient first enters, to when they close your door for the last time, the visit is about them. Their questions answered. Their fears addressed. When you poke and prod and do tests it's not about putting you in a medical journal.
If you want a profession about you, look elsewhere. There are plenty. But this one is about everyone else you interact with. When you sit down with them, don't assume, use your ears. Think. If a test is negative, look harder. NEVER utter the phrase, "Well it's so rare it's not worth looking into". The second you say it, karma will probably bite you by making it the exact diagnosis.
Calling a patient an enigma isn't a joke. It's an insult and it's damn inappropriate.
Take this seriously. I don't care what reasons, or whose money got you here. From here on out it doesn't matter. The patients matter. Only when you've given them the tools to get better do you get the props and the smiles and the kudos. If you insist on them taking the time and money to send you their records, then have the decency to get off your ass and find the time to read them. Or why bother? If you won't take the time and the initiative for your own patients, as your job requires, what was the point of this very expensive exercise?
You've chosen a very noble profession. You ought to be commended for it, truly. But before the commendation comes the necessary work. Be the leaders we all hope you are. If you ever find that you don't care for or respect your patients, please do us a favor and step down. Because we know that there are plenty of people willing to fill your shoes who do care, who are willing to fight. And we're more than happy to drag you off the high horse you rode in on if you continuously get in the way of our health.
So you've finished med school. You've survived the insane hours, the exams, the four years of no sleep. You should be proud of your work, honestly. Celebrate this.
You've got your shiny new lab coats. Now earn them. From here on out your patients are people. The human body doesn't read your textbook to make sure it falls in the right parameters. The numbers won't always add up. We don't have internal checklists.
Your patients are real. They're afraid, they're looking to you to figure this out. We've passed pressure a long time ago, so don't even bother bringing it up. This isn't about you, or the degrees you have mounted on the walls in pretty frames. From the moment your patient first enters, to when they close your door for the last time, the visit is about them. Their questions answered. Their fears addressed. When you poke and prod and do tests it's not about putting you in a medical journal.
If you want a profession about you, look elsewhere. There are plenty. But this one is about everyone else you interact with. When you sit down with them, don't assume, use your ears. Think. If a test is negative, look harder. NEVER utter the phrase, "Well it's so rare it's not worth looking into". The second you say it, karma will probably bite you by making it the exact diagnosis.
Calling a patient an enigma isn't a joke. It's an insult and it's damn inappropriate.
Take this seriously. I don't care what reasons, or whose money got you here. From here on out it doesn't matter. The patients matter. Only when you've given them the tools to get better do you get the props and the smiles and the kudos. If you insist on them taking the time and money to send you their records, then have the decency to get off your ass and find the time to read them. Or why bother? If you won't take the time and the initiative for your own patients, as your job requires, what was the point of this very expensive exercise?
You've chosen a very noble profession. You ought to be commended for it, truly. But before the commendation comes the necessary work. Be the leaders we all hope you are. If you ever find that you don't care for or respect your patients, please do us a favor and step down. Because we know that there are plenty of people willing to fill your shoes who do care, who are willing to fight. And we're more than happy to drag you off the high horse you rode in on if you continuously get in the way of our health.
I'm Back!
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.
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.
Thursday, October 10, 2013
Altitude
Hi everyone!! I'm really sorry I haven't posted for a couple days. When my doctor in Cleveland said I'd do better at lower altitude I didn't really think it would matter since I've always lived at high altitude. And then I came back.
On the bright side, my mountains are looking stunning as usual.
On the not so bright side, I'm having a really, um, interesting time adjusting to the altitude change. I blacked out at the airport and I've been having the usual symptoms of tight chest, dizzy, falling and blacking out (apparently the medical term blacking out is syncope).
I promise to give you guys a full update with all the sarcasm you could want by the weekend.
On the bright side, my mountains are looking stunning as usual.
On the not so bright side, I'm having a really, um, interesting time adjusting to the altitude change. I blacked out at the airport and I've been having the usual symptoms of tight chest, dizzy, falling and blacking out (apparently the medical term blacking out is syncope).
I promise to give you guys a full update with all the sarcasm you could want by the weekend.
Tuesday, October 1, 2013
Cleveland Clinic
If you ever have health issues and one or more doctor tells you it's either in your head or that they don't know what's going on or they say there are possibilities too rare to look into GET TO CLEVELAND. Obviously don't take the time and money for a hang nail, but seriously. If you have anything that's been ongoing and you're not responding to treatment, these people are brilliant, kind, serious and thorough to the extreme.
When we got the call giving us directions the nurse said there was no way we could miss the clinic and she was right. It's a huge group of buildings right past the university with a gorgeous fountain in front. They have people in red jackets directing patients to whatever area they need to go. It's intense. We went into the right entrance and crossed a little bridge to another building. Every single floor of our building was neurology. Pediatric, epilepsy, psychological, etc. We went to the ninth floor that's for neuro-muscular issues. First a nurse did a precheck, then a PA-C came in and got the general picture. Both were really kind and the PA-C was from Colorado as well. Then the doctor herself came in and got the more detailed description of everything that happened. Dr. Browning wasn't like any doctor I'd had so far. She's very quiet and soft-spoken, not brusque or touchy feel-y at all. When she talks, you listen. She listened to everything, charting out the order of events and only interrupting to ask a clarifying question. She looked over all the records and test results I brought her, writing down the numbers to run against her own systems. She put the whole picture together in the two hours I was with her. She said without a doubt yes it's Dysautonomia and POTS. Apparently there are several types of Dysautonomia, so she ran a LOT of bloodwork (12 tubes. I had to take a lunch break to get my blood pumping enough for them to finish the draw. Oy.) and I'm doing a test on Thursday so that she'll have a better picture on how to treat. For the test they're doing on Thursday, they put a tan-ish, pink-ish powder on my skin and have internal and external temperature monitors on me. Then I go into a sauna. They'll check to see if my temperatures have any consistency and also they'll be checking sweat production. My last sweat test was literally a flatline. This one will see if anywhere on my body is sweating and if so which areas. I guess this helps them see which type of Dysautonomia I have. Good thing I don't have modesty issues after being a dancer. This is going to be weird enough.
Of course, since it's me, there are a couple other pieces to the puzzle that haven't been completely ruled out or looked into. There's a chance I have copper deficiency. I've never even heard of this. I guess it's pretty rare; it sometimes happens to people with gastric bypass. It's linked to Celiac, and can cause any and all of my "neuro" symptoms. I don't understand why no one looked at it since they checked every other form of malabsorption and malnutrition.
When I was diagnosed with Gastroparesis, I was seriously sick. We had to completely retrain my stomach on how to work, starting with a liquid diet for a month. I had half of a Boost (protein shake, the lowest in fat and fiber that we could find) six times a day. After a month we added a half a cup of rice or scrambled eggs a day with green tea. At first, trying to find a way to make Celiac and Gastro work was really hard, and getting used to actually measuring out half cups (I'd never paid attention to sizes before) took some getting used to, since that was the biggest serving size I was allowed. We got a juicer when I started improving and that's how I've been getting vegetables in. I still don't eat red meat, raw vegetables or anything high in fat or fiber. You'd think someone would look into every kind of absorption since even now I'm obviously not getting all the vitamins and minerals I should be getting through diet. You'd think.
Another option is a rare auto immune disease that my doctor wouldn't name. She's looking for that antibody with the bloodwork she ran. If she finds it she'll be treating with Plasma Pharesis. This is pretty similar to Dialysis, in that your blood is pumped through a machine and put back into your body. What the difference with this is that the machine filters out the plasma in the blood, removing the antibodies the body produces. The antibodies are what attack different cell systems with auto immune diseases. Sometimes this treatment is pared with immune suppressants to try to calm down the immune system and put it into a remission of sorts.
Something else that no one followed up on was towards the beginning of all of this. I saw an Endocrinologist who thought I might have Addison's disease (an autoimmune disease that attacks the adrenal glands), so she ran an ACTH stimulation test. For this test they draw your blood at the beginning for a baseline, and then they give you an injection of Cortisol (what the adrenal glands produce). After thirty minutes they do another blood draw and again after sixty minutes have passed. Initially, your numbers are supposed to start low, and they're supposed to go up by 18-20 micrograms per deciliter. My number started at 31, after thirty minutes went up to 35 and after sixty minutes went back down to 30. It ruled out Addison's but was a seriously abnormal result. We'd shown this test to every doctor since then and no one had seemed concerned or wanted to follow up. I kept all of my medical records and had them separated by doctor/hospital and in chronological order for Dr. Browning. She was going through all of them when she saw this test and she wasn't happy when she saw it. She said it either wasn't done correctly, or if it was, it needed to be looked into. She said it could be a huge contributing factor to everything I have going on. So when I make it back to Denver, that's in the works; go back to Barbara Davis and see the Endocrinologist I trust.
In regards to my POTS she's setting me up with the cardiac unit. They're going to do a full out evaluation including an exercise segment to figure out exactly what's going on with my heart. After the eval, they're going to give me a personalized rehabilitation program that I can take home to my physical therapist. This is honestly what I'm most excited about. I miss being active more than anything. I miss dancing and hiking and running and Pilates. I've been seeing a physical therapist who I really like and respect and I think he's been as frustrated as me with this whole process. Until he had a clear diagnosis he didn't really have a goal to work towards with me, and he really didn't like seeing me get worse instead of better. It'll be so nice to have a plan instead of guesswork. The only problem is that because the Cleveland Clinic's cardiac unit is so highly respected I'll have to come back in a month for this eval. It's the soonest I could get in, and that was with the awesome receptionist pulling favors for me.
I'm feeling so much better about everything. Yes, there are still details we have to hash out but on the whole I'm finally moving in the right direction.
I know this is a lot so if anyone has questions go ahead and leave comments and I'll get back to you.
When we got the call giving us directions the nurse said there was no way we could miss the clinic and she was right. It's a huge group of buildings right past the university with a gorgeous fountain in front. They have people in red jackets directing patients to whatever area they need to go. It's intense. We went into the right entrance and crossed a little bridge to another building. Every single floor of our building was neurology. Pediatric, epilepsy, psychological, etc. We went to the ninth floor that's for neuro-muscular issues. First a nurse did a precheck, then a PA-C came in and got the general picture. Both were really kind and the PA-C was from Colorado as well. Then the doctor herself came in and got the more detailed description of everything that happened. Dr. Browning wasn't like any doctor I'd had so far. She's very quiet and soft-spoken, not brusque or touchy feel-y at all. When she talks, you listen. She listened to everything, charting out the order of events and only interrupting to ask a clarifying question. She looked over all the records and test results I brought her, writing down the numbers to run against her own systems. She put the whole picture together in the two hours I was with her. She said without a doubt yes it's Dysautonomia and POTS. Apparently there are several types of Dysautonomia, so she ran a LOT of bloodwork (12 tubes. I had to take a lunch break to get my blood pumping enough for them to finish the draw. Oy.) and I'm doing a test on Thursday so that she'll have a better picture on how to treat. For the test they're doing on Thursday, they put a tan-ish, pink-ish powder on my skin and have internal and external temperature monitors on me. Then I go into a sauna. They'll check to see if my temperatures have any consistency and also they'll be checking sweat production. My last sweat test was literally a flatline. This one will see if anywhere on my body is sweating and if so which areas. I guess this helps them see which type of Dysautonomia I have. Good thing I don't have modesty issues after being a dancer. This is going to be weird enough.
Of course, since it's me, there are a couple other pieces to the puzzle that haven't been completely ruled out or looked into. There's a chance I have copper deficiency. I've never even heard of this. I guess it's pretty rare; it sometimes happens to people with gastric bypass. It's linked to Celiac, and can cause any and all of my "neuro" symptoms. I don't understand why no one looked at it since they checked every other form of malabsorption and malnutrition.
When I was diagnosed with Gastroparesis, I was seriously sick. We had to completely retrain my stomach on how to work, starting with a liquid diet for a month. I had half of a Boost (protein shake, the lowest in fat and fiber that we could find) six times a day. After a month we added a half a cup of rice or scrambled eggs a day with green tea. At first, trying to find a way to make Celiac and Gastro work was really hard, and getting used to actually measuring out half cups (I'd never paid attention to sizes before) took some getting used to, since that was the biggest serving size I was allowed. We got a juicer when I started improving and that's how I've been getting vegetables in. I still don't eat red meat, raw vegetables or anything high in fat or fiber. You'd think someone would look into every kind of absorption since even now I'm obviously not getting all the vitamins and minerals I should be getting through diet. You'd think.
Another option is a rare auto immune disease that my doctor wouldn't name. She's looking for that antibody with the bloodwork she ran. If she finds it she'll be treating with Plasma Pharesis. This is pretty similar to Dialysis, in that your blood is pumped through a machine and put back into your body. What the difference with this is that the machine filters out the plasma in the blood, removing the antibodies the body produces. The antibodies are what attack different cell systems with auto immune diseases. Sometimes this treatment is pared with immune suppressants to try to calm down the immune system and put it into a remission of sorts.
Something else that no one followed up on was towards the beginning of all of this. I saw an Endocrinologist who thought I might have Addison's disease (an autoimmune disease that attacks the adrenal glands), so she ran an ACTH stimulation test. For this test they draw your blood at the beginning for a baseline, and then they give you an injection of Cortisol (what the adrenal glands produce). After thirty minutes they do another blood draw and again after sixty minutes have passed. Initially, your numbers are supposed to start low, and they're supposed to go up by 18-20 micrograms per deciliter. My number started at 31, after thirty minutes went up to 35 and after sixty minutes went back down to 30. It ruled out Addison's but was a seriously abnormal result. We'd shown this test to every doctor since then and no one had seemed concerned or wanted to follow up. I kept all of my medical records and had them separated by doctor/hospital and in chronological order for Dr. Browning. She was going through all of them when she saw this test and she wasn't happy when she saw it. She said it either wasn't done correctly, or if it was, it needed to be looked into. She said it could be a huge contributing factor to everything I have going on. So when I make it back to Denver, that's in the works; go back to Barbara Davis and see the Endocrinologist I trust.
In regards to my POTS she's setting me up with the cardiac unit. They're going to do a full out evaluation including an exercise segment to figure out exactly what's going on with my heart. After the eval, they're going to give me a personalized rehabilitation program that I can take home to my physical therapist. This is honestly what I'm most excited about. I miss being active more than anything. I miss dancing and hiking and running and Pilates. I've been seeing a physical therapist who I really like and respect and I think he's been as frustrated as me with this whole process. Until he had a clear diagnosis he didn't really have a goal to work towards with me, and he really didn't like seeing me get worse instead of better. It'll be so nice to have a plan instead of guesswork. The only problem is that because the Cleveland Clinic's cardiac unit is so highly respected I'll have to come back in a month for this eval. It's the soonest I could get in, and that was with the awesome receptionist pulling favors for me.
I'm feeling so much better about everything. Yes, there are still details we have to hash out but on the whole I'm finally moving in the right direction.
I know this is a lot so if anyone has questions go ahead and leave comments and I'll get back to you.
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