Graduation And All The Emotion That Comes With It

This one might be a bit of a long post, brace yourselves darlings.

First of all, I hope no one reading this sees my writing as a poor me stunt. I started writing to let my family and friends know all the medical terms and testing I was going through. When I finally got my diagnoses, and we had a better view on how rare my situation was, my intentions changed.

Growing up, my mom gave me a book titled "Small Steps: The Year I Got Polio" by Peg Kehret. This poor book, like most in my collection at this point, is severely dog-eared by all the times I've looked to it for comfort. Reading and writing has always been focal to my life. I remember one time when I was really little, I ran to my mom crying. My big brother and sister were too involved with their books to play with me and I hadn't learned how to read yet. My mom's solution was to read to me and teach me how to read on my own. The written word has always been a source of comfort and escapism for me. The book I mentioned, "Small Steps", is an incredible book about the resilience of the human spirit and body. The young woman got diagnosed with Polio in her teens and was so sick she had to use the Iron Lung for a while. Eventually, using her small steps, she worked her way back to health. You can see why I found so much inspiration with this book. I adopted her mantra into my own life. If you need a "you can do this" book, read it. It's intended for a YA audience but wonderful regardless of your age.

I believe God (by whatever name in whichever language, or the universe, or karma, or whatever you believe in) gives us warning and preparation for what's to come. Sometimes we can only see the signs in retrospect, but I firmly believe they're there. This was one of mine. Understanding the battle, the patience and persistence necessary to fight and claw your way back to health became all consuming. One step at a time. It became a way to coach myself. Just take this step. This one step and then you can relax. See this one doctor. They have to see the symptoms. They have to understand it's real. You can't fake your heartbeat or your stomach not functioning. You can't fake blood pressure. One more try.

Always, one more try. One more step.

Reading books by people who's bodies turned from their outer self to the enemy became a form of therapy. They did it. If they made it work with their terrible situations, so could I. I hope that my writing does that for someone. This is my new focus. To do whatever it takes to help raise awareness and support for rare diseases. Use whatever medium I can get my small hands on to get the necessary message of empathy and support to those that need it.

And pity the poor fool that dares to tell me it's too rare to look into. Don't ever tell me the odds. I will shove them down your insensitive, ignorant throat. I beat the odds every single time they were stacked against me, and I'll help others do the same. You're welcome to watch as long as you don't get in my way.

I graduated from Cardiac Rehab yesterday. I even got a diploma that I totally plan on framing. I found out I was graduating on Monday. Monday night I had a panic attack. For the past twelve years, every time I've felt like my health was starting to get under control something insane came up and I was back in a hospital, trying to explain weird symptoms to a doctor whose only reaction was a blank stare. In those situations, I did my best to refrain from throwing things. I've killed so many phones by throwing them when I'm mad. Not the brightest plan. Blame my Scottish temper.

I don't trust my body anymore. I can't trust waking or sleeping that something won't go wrong (or pop out of place). But I can place faith in my team. In my nurses and doctors who are in my corner. In my mom and my incredible family and friends that form the best support system anyone could ask for.

One of the members of my Cardiac Rehab team heard that I was terrified of not being in the program and getting sick again. She pulled my full file and showed me the numbers so I could see exactly how much better I was doing. The results are crazy. Remember when I started? I could barely do five minutes on a recumbent bike, going so slowly the computer kept kicking me out. Now, I walk 45 minutes three times a week at 2.5 miles per hour. My blood pressure didn't change at all when I first started, and now it increases with workouts the way it's supposed to. I sweat again. Yes, that's strange to talk about but I promise you, no sweating is painful. The balance of internal and external temperatures is so important, and you don't even think about it til your body doesn't do it. Imagine your internal temperature burning up while on the outside your skin is cold. Weird. And not fun. So glad that's over with. I'm never complaining about sweat ever again. Ever.

Of all the things to be grateful for haha. Sweat is totally up there for me.

I was able to eat a whole half of a salad the other day! Speaking of awesome improvements. That was the first raw vegetable of any kind I'd eaten for over a year. AND I kept down a glass of wine. Woohoo!!!

If this keeps up my body and I might be able to get back on speaking terms. Wouldn't that be great?

Another thing I'm struggling with is how to get back into the real world. How do I explain in job or school interviews why I've been out of work and school for so long? Do I just say, "I was sick"? I feel like that leaves so much room for misinterpretation. "I have a heart condition" isn't necessarily true, but "I needed to retrain my Vagus nerve" is plain bloody confusing. Most people aren't aware there's such a thing as the autonomic nervous system; God knows I didn't before all of this! I kind of want to invent stories to make it more fun. "My shoulder popped out when I was wrestling with a whale." "A bear tried to take my bagel. I got it back We had a minor disagreement." (The bagel story I can't take credit for, it was one of my best friends' story of how he broke his collar bone.) "I was jumping on my bed and I saw a spider so I dove off the bed to get away. I dove wrong. By wrong, I mean I dove into the wall." "I worked retail on Black Friday. Do I really need to explain further? Those people are scary. And there were demon children. Demon. Children. I'm also deaf in my left ear now. I'm sorry, what was your question?"

One of the guys at CR, on his first day asked me if I'd had a heart attack and said I seemed too young to be there. I know it was said out of good intentions, so I didn't lose it. If I'd felt it was coming out of malice I have a lovely stash of sassy replies: "Aren't you old enough to know better than to ask something like that?" "You seem a little old to be that stupid." "#$&@ off" "Want to do a fun social experiment? Keep the condescension up. See what happens". I have many more with lots of bad words in other languages just because it's fun to insult someone in Chinese. I want to learn Russian and German just for when I'm mad. I know, I'm weird. You have to admit though; seeing a small, angry, Scottish woman shouting at you in Russian or German and throwing in random Chinese insults would definitely leave an impression. Hehe.

I asked my physical therapist what a polite response to "Aren't you too young for this?" is. I've been asked it so many times and I'm sick of it. My reactions are usually: giving them my best death stare til they back off, trying to explain everything in a short version that doesn't make sense because I'm talking too fast and I end up flustered, or I try to make a joke out of it that usually ends up insulting either me or the person asking. Or both. Ed's response was awesome. "I don't have a polite reaction to that question. Most of the people in CR are there because they didn't take good care of their bodies. You have a very rare combination of very rare diseases. They put you through hell to get the diagnosis and this is the best therapy for what you have. It's clearly working and they should focus on their own health problems. None of this was your fault and you push yourself harder than any other patient I've seen to get well. If I was there I'd tell him to fuck off." Nothing makes a girl feel better than a very tall man friend in their corner. Ed's been with me from the beginning, he saw how sick I was and I see him more like a friend than a physical therapist at this point. It was so nice hearing him defend me. He and his wife are expecting their first little one. He's going to be such a good daddy.

I understand that when people see me they don't see a "sick" person. It's the reason so few doctors or fellow patients take me seriously til they know me or can see the test results for themselves. When I'm in pain I usually lock my jaw and ignore it. (My dentist loves that, I'm sure.) My only sign that I need to do something for the pain is when I start throwing up or get shaky from it. I'm more likely to push too hard then to slack off (one of my best friends jokes about beating me over the head at the gym if I push too much). Patience is the hardest thing for me. I already have a pretty short fuse and I have a small (ish) tendency to be hard on myself. Excuses and whining annoy me. I know I have a lot of faults that I need to work on, patience being close to the top. Another is I care too much about too many things. After being this sick I want to take care of anyone who is hurting. It would be easier for me to take their pain so they wouldn't have to carry it anymore because I can't stand watching people hurt. I have a seriously overactive momma bear instinct. I wish more people had empathy. I certainly wish more doctors had it.

Before all of this happened to me, I never admitted I had fear. Even to myself. Not knowing what was going on with my body, knowing something was wrong but being told my results were "normal" taught me the taste of fear. I've never been a vain person, especially when it comes to physical appearance. It's hard for me to fight for myself. This, along with the fear compounded so much that I was almost crippled by it. I started to believe that the doctors were right, that maybe it wasn't real and I should try the anti depressants several doctors suggested. It wasn't until I learned to acknowledge my fears, to give them names and accept that I was afraid, that I could grow from my fears and rediscover the strength I used to take for granted. Accepting that I was afraid somehow gave me the courage to overcome the experiences. By accepting, I wasn't saying by any means that I was ok with what I'd gone through. It was almost like I was giving myself permission to be upset, permission to say the whole thing sucked and I was mad as hell. It became cathartic.

People have told me my story inspires them. That encourages me to keep pushing, to keep healing and writing. If my story helps even just one person overcome their own health problems, it'll all be worth it to me. One thing I need to say, though, is that my mom is the one who deserves the majority of the credit. She absolutely refused to give up on me, and refused to let me give up on myself. I don't know what would have happened if we hadn't gone to the Cleveland Clinic when we did -- I don't want to know. I know it makes me uncomfortable when people say my success is due to me. It's not. It's due to my mom fighting for me every second of this process. It's due to my family; my sister, brother, dad and stepdad and their support. It's due to the doctors and nurses and Ed for taking my word at face value and not writing me off. It's due to friends sending their encouragement. I'm blessed by the people that surround me. My success stems from them. I couldn't have gotten better without them. If they say otherwise it's very kind but not true. If only because I say so, damn it.

I understand that at some point I'll have to take some credit for getting better. I need you to understand I will fight off that moment as long as humanly possible. I can take credit for my temper and for my stubbornness. Once mom convinced me to fight, I fought. I fought for her, because I know for damn sure she fought like hell for me. I would take a bullet for my family (and I consider my friends family), literal or metaphorical. I definitely prefer the metaphorical scenario, but still. I know that seeing me as sick as I was hurt loved ones as much as my symptoms hurt me. This was my biggest motivation to get better. If I can help it, I'll protect my loved ones from pain, physical or emotional, whenever possible. So I locked my jaw and took those small steps. Eventually they added up and I was (finally) on the right road again.

I'm not at 100% yet; I still have my work cut out for me. Now that I'm up to 45 minutes of exercise without having my heart spike over 150 BPM, I can start interval training to add speed and incline. I can also try out adding other forms of exercise in slow segments while watching my HR on my own monitor. Since I "graduated" from CR, I'm moving to the independent work classes. There will still be nurses there watching us and monitoring our oxygen levels and pulse, but this class only meets twice a week and I no longer have to to attach leads to my hyperactive skin. No more red spots on my chest!! Maybe soon I can start doing at least the barre segments of ballet classes. I guarantee the first class I take I'll end up crying before, during, after or all of the above. Happy tears of course. And as soon as my shoulder stops trying its hand at flying I can start MMA to vent off Scottish temper steam.

Later on, when I trust my body a little more I'm going to get a small heart tattoo on the side of my right wrist. I'm also planning three more tattoos that are quotes. I want to get "Excelsior" right under my heart on my rib cage; "Though I walk through the valley of the shadow of death, I will fear no evil. XII III.II.I" (The "XII" is for the twelve years it took to get my final diagnoses, the "III.II.I" are for my three auto immune, two autonomic and one genetic illnesses. It's not a reference to its place in the Bible.) on the right side of my torso; "I am the master of my fate, I am the captain of my soul." on the inside of my left bicep. These quotes were some of my biggest inspirations.

There's a quote from Nelson Mandela, who I respect and admire with every fiber of my being. The quote is, "There is no easy walk to freedom anywhere, and many of us will have to pass through the valley of the shadow of death again and again before we reach the mountaintop of our desires". It's one of my favorite quotes from the incredible man. Then again, every time he opened his mouth to speak pure beautiful brilliance came out. I have a lot of favorite quotes from him, but this one in particular stuck with me. At some point I plan to take a trip to South Africa to pay my respects at his grave. The brave man who showed us true courage, empathy and the most open heart the world has ever seen.

This experience has been such a roller-coaster physically and emotionally. I thought I was prepared for whatever work I needed to do for cardiac and physical rehabilitation, but now I see that as insanely naive. I also didn't even think about the emotional aspects of getting diagnosed with a total of six chronic illnesses. The idea of of forever with three new illnesses. This experience has taught me so much about myself and the person I want to be. I learned for the first time that it's ok not to be perfect. There is no cookie cutter reality in life. Nothing is set in stone. Admitting you're afraid doesn't make you weak, it makes you honest. And people show their true colors when someone has anything more serious than a hang nail. All I can say is if you can find it in your heart to be open to new possibilities, if you can open your heart to every facet of your journey it will make everything worth the pain. 

I'm still alive. I have another chance to make the difference I want to make. Another chance to meet new people and find new adventures, make more mistakes. Learn more languages. Immerse myself into other cultures. Find projects that scare and intimidate me. Get into more arguments and cause more trouble. Shake things up. Push the boundaries. Laugh more. Love deeper. Fight more fiercely. 

Let's have some fun.

Courage

Since I've started writing, some people have come to me with questions or their own medical stories. These both gut me to the core and fill me with so much awe for human resilience. I'm going to share a couple, without any personal details just to give you an idea. Please understand that when I talk about these, it's my interpretation and any wrong facts are my fault alone. Also, my mom has a master's degree in special education, and, being her daughter I've seen first hand some of the most incredible things. Incredible in both the amazingly beautiful and the amazingly ignorant form of the word. More on that later.

I have a friend who was diagnosed in their teens with Bipolar disease. For literally a decade they fought both the medications and all the social and psychological ramifications of having this disease. The medications are severe, I'm not going to sugar coat it. They can also add complications to other disorders or medications (like many heavy meds). My friend is now finding out that it might have been a misdiagnosis the whole time. It turns out that Hashimoto's Hypothyroid (sound familiar?) runs in their family, as well as other auto immune diseases on both sides of their family. Lythium, one of the medications, can affect Thyroid levels as well as other things. This person's TSH (a Thyroid blood lab) has been increasing over the years on the medication and THEY, not the doctors, the patient was the one to catch it. What do you even say in a situation like that. "Whoops"? A decade. An effing decade of misdiagnosis. So. Stupid. They don't deserve this. No one deserves this. The individual is now doing their own research to find the medical care they need to get their symptoms under control. This is one of my biggest pet peeves. When you're a teen not only do you have no legal rights but you don't have the independence to undertake this journey alone. You're completely at the mercy of the doctors and your families, and I pray to God that those individuals will do their jobs to protect you. It doesn't always happen, with or without the best of intentions and it's the teens and children who suffer from it. When we're in our mid to late twenties we've had enough experience and we have the capabilities to take things under our own control, legally, financially, medically. No one can hold us against our will and no one can prescribe medical treatment we don't want. Patient advocacy is a growing field that is so vital. Someone needs to speak up for the patients and for their families so that they don't get lost in a system that more often than not sees them as a bar-code instead of as a person.

I was gutted when I found out about this. In one way it would have been easier if I'd been the only one who'd had an experience of this kind. Years of misdiagnosis and disbelief. Every time I hear about a similar story it breaks my heart. I know how much you question your own conviction over the years, how much it shakes your core to be told over and over the symptoms are nothing. You need a counselor. It's growing pains. You're just an anxious woman. It's happening over and over again, to women of any age, to children and teens. What do they teach in med school, that it's ok to disbelieve someone because you, oh holy doctor, are so much higher above them? I guarantee if we were to look, you would bleed the same blood. Your chemical makeup is the same. You cry the same tears. The excuses are wearing thin.

Another story I have to share, is about a very young woman that my mom worked with. She has a very rare seizure disorder. When I met her she was three. She'd had over a hundred "stat" seizures. What I mean by that is that her family had to call 911 because of the severity of her seizures. She had hundreds of "blink-out" seizures, I'm sorry I really don't have a clinical name for them. Basically what happened was she'd literally blink, almost fall and catch herself and that would be the extent of her seizure. Another problem was her body wouldn't snap out of the seizures like typical patients do. There was one time she had an eight hour seizure. I hadn't met her yet but I remember how upset mom was. Mom and the patient's family thought they were going to lose her. Mom had to tell the doctors she was still seizing. The right side of her body was normal but the entire left side was locked. The problem was they'd already tried so many medications to try to stop the seizures that it became a balancing act. She had what I think of as seizure storms in her brain, imagine a thunder storm in a cloud. Because of this, the surgical procedure of removing a portion of the brain to stop the seizures wasn't an option; they were never localized.

Eventually she was diagnosed with Dravet Syndrome in New York.There's a serious danger with these children. They have full blown seizures, but their little bodies aren't meant to handle the amount of medication needed to stop the seizures. The hazard is either their hearts will stop or their brains will succumb to the trauma. Every time her caretakers had to give her the seizure medication, they would then have to call 911 in case her heart stopped and they had to resuscitate her. She was so used to this that when she heard sirens she'd assume they were for her and she'd go to the window to see if the paramedics were at the door. The first time I saw this I had to go to my room because I didn't want her to see me cry. If the children with this disease can make it the ages of seven to eleven, they're thought to have a chance. The fire department at her town knew her and loved her so much that they ran in a phalanx formation around her at the Epilepsy 5K every year while her mom ran with her in the stroller.

Another problem with Dravet Syndrome is that it's so rare, none of the medications are approved by the FDA. It's not lucrative enough to merit funding. What this means then, is that no insurance company will cover the costs for the medication. This is why the disease is so dangerous. Not many families can afford to pay face value costs for medications from Europe or Canada. I know for a fact that mine wouldn't have been able to. This is why so many of the children with Dravet die early. Either they're given too much medication and their bodies succumb or their families can't afford to keep paying their medical costs and have to let the children fight the seizures as best they can on their own. As more of these stories are coming out, there are organizations being formed to help patients find resources but it's not enough. With my girl, she was very fortunate. Her parents are wealthy enough to be able to cover the costs of her medications and ambulance trips. If they hadn't been, her story would have been very different.

Eventually, after my mom had been working with her for about a year, she felt she was stable enough to come to our house, and that's when I started working with her. My girl has the brightest smile, she lives every day with so much joy. She loves to be outdoors, to dance, to play. Despite everything she's never bitter. There were times she was sad, of course there were times. But she has too much love to dwell on it, and it's something we can all learn from.

She knew when her seizures were coming, and there was one time she kept saying, "I don't want it, I don't want it." And she started crying. My mom had trained my sister and I on what to do if she had a seizure so that we could have one person help her and one call 911 and wait for the paramedics. That day I held her in my arms while mom talked to the operator. Her seizure started and we gave her the medicine and I held her the whole time. I kept telling her, "I'm here sweetheart. Kim's here and Connie's here. You're not alone. We're here with you and we love you with our whole hearts." The paramedics came and tried telling mom she couldn't come in the ambulance. I remember laughing at her reaction, "Oh yes I am and you are not stopping me." My sweet girl snapped out of the seizure on the ride to the hospital, and her mom and I were there waiting. One of the firemen had given her a helmet that she was wearing. She said, "Sorry, kids." when she saw the stricken looks on our faces and when I hugged her she said, "Thanks, Kim". Of course, I started crying. I'll remember that day til I die. This one small girl facing the terror of her own Hell with more courage and love than I'd ever seen before.

She had a seizure every eight days if she was lucky, if not they were more frequent. Every big seizure scrambled her speaking and reading skills. I don't know how many times mom taught and retaught her how to read and speak. She'd get so frustrated because she knew the information was there if she could just find it. My mom found out that her signing skills were untouched by the seizures and that became my girl's outlet, she even taught me some signs. That and dance. She decided watching me dance and dancing with me was the most special thing. Her favorite thing to do was spin. Well, that and steal my pointe shoes and teddy bears to take home.

I want you to take a moment. If you couldn't trust your brain to retain information as vital as expression and communication, what would you do? If you fought your body for your life every week, if we lived with that kind of courage what could we do? Please think about others. These children, these teens, these patients without age or gender are fighting so hard just for the right to their own bodies, to their own lives. Stop thinking for a minute about ambitions, vacations, parties, texts, sex and money. Just for a minute. Consider them. Consider their battles.

Do you get where I'm coming from? These patients need a voice. They need to know that they're not alone, and I don't have the slightest idea where to start addressing the problem. Regardless, it needs to be addressed. And I'm not going to stop until I know I've changed the process, made it better for people. I need help. I want to give these people someone who gives a damn, who's listening and taking them seriously. I'll do what it takes, I don't care. Do I need to go from med school to med school sharing these stories and staring the students down til they're intimidated sufficiently? Probably wouldn't be the best plan. Do I need to write to every Senator, every Representative we've elected and the President? Go and talk to them about it? Seriously. I'll go. I was a delegate. I'm not intimidated easily, it's one of my biggest faults. This issue is so big and I don't know where to start, but I'm taking it on the second I'm out of rehab, and I'm starting to plan and network for it now. Please give me ideas, I'll take any.

Revamping

As of this week we're revamping my cardiac rehab regimen and adding exercises in physical therapy. We're finally getting to the point where I'm comfortable. Not to the point where I can push as much as I used to, but we're getting close!

The new goal in cardiac rehab is to get me doing as much on the treadmill as I can without symptoms, and the second I start getting tired or dizzy to go back to the upright bike. I got up to fifteen minutes in the last session, which pretty much means every time I've tried the treadmill I've lasted five minutes longer than the last time (walking). That's pretty good, compared to where I was when I started. And I'm sweating again!!! I know that's a strange and slightly creepy thing for me to be shouting about. Sorry. I have no boundaries, seriously. The reason I'm excited about it is it means my autonomic nervous system is finally getting back to doing what it's supposed to do. (Regulate heartbeat, produce sweat to regulate internal and external temperatures, keep me generally alive-sembling....kidding. Kind of.) Which means the nerve is getting retrained, which means Mr. Levine who came up with this protocol deserves a very big thank you. And a medal. Where do you go to get medals made? I feel like I should know this kind of thing. Something to look into.

The feisty is coming back too. Feels good.

In physical therapy we're focusing on my shoulders for now, since they're the joints that are slipping the most. I'm at the lowest intensity level (but up to two whole pounds in weights! Yeah man!) and my muscles are sore for a normal, healthy reason for the first time in, oh, years. I missed it! I missed the burn of a good workout, where your legs are shaky from running, not from your autonomic nervous system or some other nervous system eating you. That's how I imagine it at least. When I'm bored my over active imagination comes into play and I picture what my body's doing to me. And then I get mad, which is when I stop and find something distracting to do. It'll be a really good thing when I go back to school, or work at least so I have something to do besides rehab and pt. Bored and overactive imagination create some interesting scenarios. Maybe I'll start writing scripts like my mom suggests. It'd give me something to do besides writing my senators and sharing my health story in no uncertain terms. Hee.

I've heard it said that true best friends can go months without seeing each other and pick up like nothing happened. I'm lucky enough to have friends like these, and I value you more than I could ever say. I know if I email you, no matter where you are or what you're doing you'll get back to me and you know it's the same with me. You'll have a sassy, encouraging, sarcastic thing to say about whatever's going on. Missing you feels like a piece of me is gone, but picturing you kicking ass and owning the scene makes me smile.

"St. Jude, pray for us."

I'm not a Catholic, but he's the patron saint of hopeless causes and more often than not, they're the ones worth fighting for.

New Beginnings

It may seem kind of convenient that I'm reaching this new phase in treatment just in time for the new year, and I'll try not to get ahead of myself (or beat up on myself) and see it for what it is: just the next phase.

Since I'm starting to get more views with every post and from other countries, I'll start this post with a small recap of everything. I'm a twenty four year old woman living in Colorado. I was diagnosed with Celiac on my thirteenth birthday after about a year of stomach issues (and all of the early signs, now that we know them all haha. I was a preemie baby, my mom had to dress me in doll clothes when I was born, baby clothes fell off. Also, I have super sensitive skin and my eyelashes fall out sometimes.) I got false diagnoses of a bunch of different auto immune diseases growing up, my joints were always hypermobile to a kind of nasty degree but doctors called it growing pains and said that of course I was flexible, I was a dancer. Since they didn't know what to do with me I kind of ignored it (great advice, not.) My PCP found Hashimoto's Hypothyroid disease when I was eighteen, so I went years thinking those two were my only illnesses.

I danced for eighteen years (imagine how fun it is to do the Nutcracker with no eyelashes. Yay, falsies!) before that career ended with a spine injury. Turns out my hypermobile joints were actually caused by a genetic illness that I'll talk about more later. I had an ankle surgery at eighteen because my right ankle overextended and a ligament got stuck in the joint when it came back in. My spine injury was a lot more complicated, I had two bulging disks at the base of my spine (L4-L5 and L5-S1), possibly due to the same issue or overuse from dance. I had an injury in dance class where the disks herniated, my right lat muscle tore and my L4 vertebra broke. It was nasty. I kept having issues after endoscopic injections and when they did a CT scan they found my L5-S1 disk was cutting into my spinal cord and I needed surgery a week later, on my brother's birthday. It's always birthdays or holidays with me, I swear.

It took me a while to figure out what to do with my life without dance in the picture. I changed majors probably about five times a semester before I moved back to Colorado for a change in scenery, and to get back to school and figure everything out. That plan got derailed when I started getting really sick out of nowhere. It started with sharp stomach pain and I couldn't keep anything down and months later (on New Year's last year) I found out it was Gastroparesis. Right when we found that out I started having new symptoms, I had tremors in both arms and both legs and random times, I started having balance issues (this was important because of the career in dance. Before then, I'd never in my life passed out or had balance issues. Ever.) blacking out all the time, and my muscle strength went from really high to nothing. I was absolutely terrified. I don't let go of control easily in regards to my own life. After nine neurologists did a million and one tests to prove themselves right (which failed, by the way. Naturally if they can't find the answer it's because the "girl" is lying for attention. I'll skip the bad language that this makes me want to use.) my mom and I gave up and went to the Cleveland Clinic. We were in Cleveland for a week and every doctor's visit was a test or a diagnosis. They took twelve tubes of blood (I have small veins. It took a while.) and I finally got my answer, twelve years after my bout with diagnoses of lifelong illnesses started.

In total I have Celiac, Hashimoto's, Gastroparesis, Ehlers-Danlos and Postural Orthostatic Tachycardia Syndrome. I've been in Cardiac Rehab for my POTS for about two months now, trying to retrain the nerve connections between my brain and heart to get things back to normal. Until my team at CR was satisfied, meaning I could handle standing and exercising without my heart going past 130 (it likes to go a lot higher) I was banned from physical therapy to keep everything from spiraling downward again. Ehlers-Danlos (at least the type I have) is a genetic disorder that means collagen production is smaller in me, so my joints aren't as protected, so they'll bend at bad angles and potentially dislocate. My doctors think that doing dance and pilates for years saved my little white ass in this aspect, it kept my joints limber and strong, protecting them from injury. It's been three years now since I've taken serious dance classes and my joints have gotten really deconditioned. I was hoping I didn't injure something on accident before I was allowed back into pt to get everything strong again but hey, this is me we're talking about! I was sleeping and my right shoulder subluxed (don't ask me how, I have no idea. No, as my doctor asked, I wasn't wrestling or anything, just sleeping.) and I need about a month of pt to try and prevent surgery. (Let's skip the cutting into me and letting my multiple diseases try to eat me alive. We just calmed them down.)

But that (finally, sorry I'm bad at "short" anything when it comes to writing. It's why I'm going into script writing as my new major haha. I can write for days.) brings me to my news! I'm cleared for pt as long as I do it sitting down on a mat or yoga ball. Hah. Hey, I'll take it! We're going to focus on my shoulders at first and see where we need to take it from there. But I'm really excited:) I think this is another turning point, and I'm very fond of those lovely moments in recovery. It's a step forward.

I might even get to go back to work again soon! Keep your fingers crossed for me? I'm just so happy to start retraining, even if it's at a slower pace. I'm comfortable retraining muscles and joints, still unsure about the whole retraining nerves thing.

I know it's New Year's and I know a lot of people do resolutions, and I'm seriously not trying to say they're bad. I think anything that motivates you to be stronger, kinder, more successful, happier, healthier, whatever is great. Use it. In my life, things change on a dime and I mean that literally. Spine injury, diseases onset, disease diagnoses, it happens in an instant. Maybe more people need life changing events, I just hope they're, you know, happy ones. Not....you know. You can lose or win everything in the blink of an eye, we can't control our destinies. Take the punches as they come and try to be the best, kindest, most sympathetic person you can be when you come out the other end. Don't judge. It never does either side any good. (It also pisses off little Scots women like me. We may be small but we're loud and feisty. You've been warned.) I can't make long term goals because I'm still not at a point where I trust my health to stay a constant to allow me any kind of plans. Of course I plan to finish my degree and be as successful and epic as I can be in my own field, and I want that for all of you, too. But I'm still taking things moment to moment and I feel like I'm walking on thin ice. I'm out of the water but not on solid land yet.

I think everything in my life was leading to this. This was meant to be, even though I don't have a clue why right now. Surprisingly, with people telling me over and over I was faking it and just fine, my self confidence has grown to be so much stronger than it ever was before. It's a little counter-intuitive. I won't play the puppet game and I sure as hell am done looking back. This is a new year. It's going to be better. I've gotten stronger and I'm getting stronger every day. I didn't give up, even though there were months that I wanted to. Real life and the business world is going to be cake compared to fighting for my life for a year a half, more when you add in the rehab and physical therapy time. I won't be letting anything get in my way anymore, including myself. Somehow in accepting my fears and giving them names, I overcame them all. I almost feel bad for the competition, almost.

Progress!:)

Exciting news! One of my nurses and I decided that I'd try out the treadmill today for five minutes. I'm up to forty five minutes of exercise now, so I did twenty minutes on both the recumbent bike and the upright bike and then did my five minutes on the treadmill. It was a lot harder than I thought it would be, but then I've never liked treadmills. Ask my friend Hanna, it's like pulling teeth to get me on one when I go to the gym. I'll run on tracks or outdoors but for some reason I just don't like treadmills.

Anyways. Five minutes.

I didn't get any bad reactions! I got tired after five minutes and I got super dizzy when I got off the machine, but my heart stayed below 150 BPM, which was our goal. Progress! I wish you could have seen my nurse, she was so excited. I love my rehab team. So. Much. It makes pushing myself easier when my team cheers me on and gets excited for me and celebrates my small victories with me.

Also, I was able to do some Ballet barre stretches by using one of the counters as my "barre". My flexibility is coming back so fast I'm so happy. I know the weight will drop off once everything's under control and I'm able to work out as much as I want, so I'm trying not to beat myself up too much over it. I'm still in the "normal" weight range according to my doctor, I'm just used to being under it. Probably not the healthiest thing to admit but whatever. I'm short and petite, I like being skinny and muscular. I've had a couple people tell me I look better "with curves". That's nice. The curves are going away. I'm sure they'll get over it. In my mind curves for me means muscle tone and definition.

Don't get me wrong, I think curves are gorgeous on women. I think when people are so skinny their bones are protruding and they can't even hold their purse or backpack because they have no muscle it's just sad. And disturbing. In my mind, strength is a higher priority. If you're strong and healthy and confident you just glow and it's stunning. Whatever size that means. Cut off size labels if you need to, they don't matter. Dance mommy rant over.

I also saw my shoulder doctor today. He's hilarious. He thinks I screwed up my rotator cuff. He agrees with me that surgery should be an absolute last resort so I'm going to try a month of physical therapy to strengthen both shoulders and get everything working again. If it's still bad after that it'll have been a couple months since the injury so then we'll start the MRI with contrast and considering surgery route. I love conservative doctors. I told him I refuse to take narcotics because they don't work on me. I get fuzzy and nauseous and still in pain. I don't like being fuzzy and nauseous. I get short (er) tempered and nobody wants that. Heh. So he gave me a prescription for Lidoderm patches. They're like Lidocaine but on an icy-hot ish patch to numb the area. He also gave me Voltaren gel that's an anti inflammatory gel. He's a good man.

So even though I'm tired, my chest is tight and my shoulder's grumpy because Raj loves to beat me up, today was a good day. I might even use some Christmas money to treat myself to some new fun makeup. We'll see how I feel after some time with ice on my shoulder.

Gyrotonics and Treasure

I may or may not have mentioned it before now, but I'm planning on moving to Portland, Oregon sometime this summer. My doctor told me flat out that I'd do better at sea level, and Portland is where my brother and sister in law live so I'll have family nearby. I'm looking at heading out there around the end of July as kind of a birthday present to myself: new apartment, new job, starting my new life and making my new (ish) body the strongest and healthiest it can be. I'm planning on lots of cross training (Pilates, Ballet, MMA, running, swimming and weights) and playing outdoors. And when I say play I mean climbing rocks and trees and mountains and finding not so smart ways of getting down. Add to that lots of skipping and dancing on small precipices and generally terrifying my family. I apologize for the new grey hairs in advance. I'll have to live there and work for a year to qualify for instate tuition at Portland State University. Because instate tuition there is around $2,000 a semester I think it's worth it. Insanely cheap. I pay for my own school so the cheapest method (when not getting in the way of quality) is typically best. I was trying to figure out what work to start here once I'm allowed and what work to do once I'm there for the year of getting to know the area, and I thought about getting certified in the Pilates method (nothing against Stott or pole Pilates, I just love the original. And have a few of his books that are dying because I've thumbed through them so often. Like all of my dance books. Hee.). I've thought about it before and actually talked to a couple schools here in Colorado but then I got sick. Certification takes about a year. Seems like a logical step to take.

I started doing Pilates religiously after my spine surgery. I needed a lot of physical therapy both because of the surgery itself as well as the injury that started everything and the months of deconditioning. I'd had a little experience with some mat Pilates through dance training, but I'd never tried out any of the equipment or toys. The physical therapy group I found was in Boulder, we lived in Broomfield at the time so it was a really short commute. Pretty much everyone at this office was either an ex dancer or was still teaching dance, so it was a perfect fit. Of course, I fell in love with it immediately. It got my back in such good shape that it didn't really show that I'd had surgery (minus my tiny scar) and everyone at the office was wonderful. We shared nasty ballet feet stories. And the owner is RIPPED. Seriously one of the coolest women I've met in the history of ever. One of the things I love the most about Pilates is that it's non weight bearing, so it's great for helping weight bearing joints heal. You use your own body to heal and strengthen your body - it's genius. Of course you can add more resistance when you've gotten stronger but you never lose control and risk injury. (Hint, hint for anyone needing physical therapy...)

I'll leave it at that. I love Pilates. I want to get certified. Moving on.

If I got certified I'd be guaranteed a high paying job with hours I could choose on my own around my school schedule, seems pretty perfect to me. I'm already planning on buying a Pilates reformer when I get back to work, it's my favorite machine. And they make some versions that slide under your bed for easy storage. So I wouldn't be the weird person that has a guest bedroom that doesn't have a bed and is instead filled with workout equipment. Heh. That is if I could afford a guest bedroom. Anyways. I looked and, of course, since it's Portland, there's a million and one places to get your certification (yes, there are Stott options too). I was reading up on one of the websites and there's a new thing called Gyrotonics? And no, before you ask, it's not at all related to gyrating, as in naughty dancing at clubs. Or, you know, wherever you have dance parties. I checked.

From the videos it looks like a mixture of dance, yoga, cardio and Pilates with a new machine. You do movements that are fluid to go through the exercises. It looks really hard and so cool! I got excited like a little kid at Christmas just looking at it.

Which reminds me. I hope you all had/are having a great holiday season whatever your traditions are!! I had a flu bug so I spent most of the day in bed but my family celebrated on Christmas Eve so it was ok haha.

Something else I wanted to share. I was talking to one of the guys from cardiac rehab who'd had two heart attacks. He is so positive and encouraging about everything. You literally see it all at rehab I guess, in terms of mentality. I've seen some bitter old people who resent the exercises, resent the new heart healthy diet (NOT that bad. They stopped when I told them what I can't eat, thankfully.) and resent the nurses (who are just doing their jobs for Christ's sake...) and grumble every session. You can tell the people that are more likely to end up back in rehab if they go back to bad habits or have conditions that don't allow for surgery, and it scares me because I've gotten so close to these people. I want to see them live and thrive and just be happy, whatever that means for them. I guess in a way you taste your mortality even more acutely with experiences like these. I try to be as kind and supportive as possible when I'm with them to give them one more thing to smile about, one more reason to fight for their health. I know how hard it is, and I know how terrifying it is as both a family member and a patient. I couldn't be a nurse, it would break my heart. I have so much respect for nurses and doctors. I'd get so mad if I saw someone flat out refuse to help themselves get better, when the team lays out the simple things they can do to help their health.

But this guy is different. He's always smiling, always positive and just happy to be there. He said that he never views it as he has this serious illness that he'll have to take care of every day, he sees it as his chance to live. His chance to do the things he never made time for before. His chance to go places, to appreciate life and to be a part of everything that he'd closed himself off to before. His chance to thrive.

Whenever I have a conversation or a moment in life I know is a game changer or is just so beautiful I want to remember it forever, I tuck it into my heart. I have this image of a treasure chest full of these moments and images. My first audition. Dancing on the stage and moving through the air. Time with family. Music that I sang with my family or danced to. Playing with my dogs. Time with my Grandpa before he died. The talk I had with this man was one of those moments that I'll hold on to for the rest of my life.

Frequently Asked Questions

Ok, so here are some of the questions that either I've had or that people have asked me about the health concerns I've been diagnosed with. If you have any other questions please leave a comment or email me:)

~Is there a cure?

No. Everything I've been with diagnosed with is either auto immune, autonomic or genetic. Medicine so far hasn't found a way to alter our genes (and it would kind of freak me out if they could). All of these issues are lifelong. In terms of treatment they are all symptomatic, and that's how the doctors and patients fight back. For my POTS I'm on a medication to help the communication between nerves and muscles. For my Gastroparesis I'm on a medication to help stimulate stomach function. For my Hashimoto's my immune system attacks my thyroid gland so I'm on a medication that replaces the thyroid hormone.

~With Celiac, what do you eat?

I eat gluten free. It's really easy for me because I've been following this diet since I was thirteen. Gluten's a protein that's found in wheat, barley, rye and some oats. If you find Irish oats or any that are grown on their own dedicated field they should be fine. The problem is that in America, a lot of oat fields are right next to wheat fields and with wind and processing you can't be sure you're not getting accidental gluten. I eat rice, potatoes and corn products or anything that is labeled as "Gluten Free". Kraft, and a couple other companies, have started an area on the ingredients list for allergens and they'll put either wheat or gluten on there. If you're wondering what ingredients do or don't have gluten in them, both www.celiac.com and www.celiac.org have really good resources for you to look at.

~Is Celiac like an allergy?

Absolutely not. I'm not trying to take away from allergies, I understand that many can be severe and life threatening, but Celiac is an auto immune disease. If you ignore it, it can lead to or trigger other auto immune diseases, epilepsy, heart problems and some forms of cancer. I'm not trying to scare anyone, I'm just laying out the facts. If you follow the diet you should be fine, of course if there are other health concerns in your family it's something for you to discuss with your doctor. Downplaying the disease won't help anyone, but neither will getting scared over nothing as long as you're following your doctor's advice.

~Can you still have kids?

Honestly, this isn't something I've talked to my doctor about yet since I'm busy figuring everything else out and not planning on children for a long time. I don't even have a boyfriend or a career so I'm not thinking about it. With Celiac, Gastroparesis, Hashimoto's and POTS, there shouldn't be an issue. POTS, maybe. But with the others there's physically no reason why having a baby should be an issue. You will have to keep in mind the fact that the diseases are genetic and so you'll need to keep it in mind with your little ones. As far as I understand it, pregnancies with EDS can lead to serious complications. I don't know if it's a possibility or not for me, but for now I'm planning on adopting anyways. If you have EDS, again please discuss it with your doctor and your partner before making any decisions. My reasons for wanting to adopt are my own.

~How do you get an auto immune or autonomic disease and what do I do if I get diagnosed with one?

In regards to auto immune diseases, you either have them or you don't. They aren't contagious in any way, shape, or form. The first way to see if you're at risk would be to see your PCP (primary doctor) and have them run a panel, checking if you have the genetic markers for any of these illnesses. The blood tests aren't 100% accurate, but it's a start. If you test positive, the illness may never get active, just like you might not have the markers but get the disease anyway. Auto immune medicine is nowhere near definite and you have to bear that in mind. There's no point stressing about it until you start having symptoms. At that point consult your PCP and they'll direct you in the process.

In regards to autonomic, they have no clue. I'm sorry. I know it's not a lot to go on. Welcome to our charming world of frustration. For some reason something goes wrong in your body, and most often everything spirals down in what's called a "flair" of symptoms. The good news is these symptoms can sometimes be helped with medicine and after some time (no, there is no set period of time) they will calm down. Speaking from experience, I can promise you. The symptoms will calm down. It may take months to years, but it will happen.

If you get POTS, look up the Levine protocol and find a cardiac rehab team that will work with you. The first month of rehab will be hard. You won't see improvement and you'll be frustrated. But if you stick with it and manage hold on to your sanity through whatever means that work for you (even if that's screaming into a pillow and crying three times a day followed by watching violent and then sappy movies, so be it.) you will get better.

Something weird about autonomic illnesses that I was told about when I was in Cleveland, is that they've found a pattern. Women aged 13- mid 20's who did competitive gymnastics or dance from an early age are the ones most commonly getting diagnosed. If that helps.

Another tip from me would be if at all possible try to get to the Cleveland Clinic. They really are wonderful. They're the worldwide leader in cardiac medicine and they are the only hospital in the US with more than one doctor dedicated in the Dysautonomia department. They're the ones doing the research and seeing the patients. When you call the question they ask is, "Do you need to see a doctor tomorrow?". They'll get you in fast and they will make you happy you went there. If you want to know the specific doctors I saw, again please email me or leave a comment and I'll email you back.

~How does eating out with Celiac work?

If you have a smart phone look up gluten free restaurants, there are a ton of apps for it. In general, most ethnic foods are good about it. Mexican, Chinese, Japanese, Thai and Indian are all fine. Seafood is typically ok, just don't trust batters or anything fried unless you've talked to the waiter and they've talked to the chef about what the batter is. In general, if you get a sandwich or burger, request it without the bun. Salads without croutons. That kind of thing.

~What do you eat with Gastroparesis?

If you're just diagnosed, please look up diet plans online. There are phases you have to go through to retrain your stomach how to process food. I was on an all liquid diet for a month. It sucked, but I got better. In general now, I eat small meals. I don't tolerate red meat, alcohol or any veggies that aren't steamed or put through a juicer. I met with a dietitian at the hospital who helped me come up with the best plan for me. I seriously recommend it. Dietitians at hospitals are a good bet because they're more likely going to know the term Gastroparesis and what it means in terms of treatment. The one I saw at Lutheran was great, she understood the diet demands of Celiac, Gastro and POTS together.

~Do you have any tips for POTS patients?

YES. First of all, drink as much water as you can. Drink a liter of water before you even get out of bed in the morning. It tricks the body into boosting circulation.

You'll need to make sure you have 5-7 grams of salt in your diet. For me, that means taking salt pills because my diet's so limited from my other illnesses. Drink them fast and with juice. They start to dissolve right away. Juice hides the flavor.

You can elevate the top of your bed, it promotes circulation throughout the night. That means not propping yourself up with pillows but putting cinder blocks or whatever under the feet of the bed. If you just prop up with pillows it can let the blood pool in one area and that doesn't help anything.

Circulation tights. They're annoying but they work. Get the ones that go up to or past the thighs, they help the most. If you're short, check out Asian brands, they're more likely going to fit your short frame. I get mine from South Korea, I love them. I'm totally turning into the person that wears workout gear all the time because it's more comfortable.

Hope this helped!

Hokay. So.

Alright so I know I failed miserably at updating like I said I would. I have an excuse though! Remember in the last post how I said EDS can cause your joints to "slip", sometimes dislocating? Well my right shoulder slipped out when I was sleeping (don't ask how, I have no idea) and it woke me up. I put it back in and went back to sleep but the next day it was really swollen and I could barely move it. I saw my doctor who did an x-ray to make sure a) that it was fully back in place and b) that I didn't break anything when I popped it back in. I didn't break anything, thankfully, and yes it's back in place. He told me I have balls for putting it back in on my own, kudos for me! Haha. About a couple weeks later it was still hurting, it pinched whenever I tried lifting it over shoulder level or leaning on it and the mobility range was way down. In other words it feels exactly like my ankle did when I needed ankle surgery. I've had two doctors tell me I'm really "insightful and exact" when it comes to my body (woohoo!) so bear with me. I know there's nothing seriously wrong or torn or generally screwed up with my shoulder, but I know there's something wrong. With my ankle it just wouldn't move past a certain point, and what my surgeon said at the time was that there was a build up of scar tissue from when my joint hyperextended and a couple ligaments got stuck when it came back into the joint. I think this is similar, I just managed to make something in the joint unhappy. As happens with me. A lot. I'd be so much happier if it was my non dominant arm. Or not at all. But hey.

I saw the PA-C of the surgeon who fixed my ankle, and he has EDS. What are the odds? Seriously? He was incredible. He suggested trying the gentlest pt possible for a couple weeks before I see the surgeon, trying to prevent surgery (meaning I'm banned from any weight over a pound. Which is so incredibly annoying.) because once you operate on a joint with EDS the odds of you needing another operation on that joint later go up exponentially. This is because everything is too loose to begin with and operations open the joint further until pt can tighten the joint back up again. He was speaking from experience, apparently he has an impressive six-inch scar on his own shoulder. (I didn't ask him to take his shirt off to prove it. I'm not a total creep.)

The swelling and pain's gone down a lot, but it still pinches and the mobility is still really bad so I'm keeping my appointment with the surgeon on the 27th. Really, really hoping I don't need surgery, but I've come to terms with everything I've been diagnosed with. There's no point in staying upset over all of it. At least if I need surgery this time it won't be on someone's birthday. I hate people spending special days in a hospital because I had another medical crisis.

Ok. So now on to POTS.

I'm up to the upright bike and I might be able to start walking on the treadmill soon!! So. So. Incredible. I refuse to think about this in terms of what I used to be able to do when I was a dancer. I'm looking at it in terms of how sick I was before my diagnosis. Also! I'm up to balancing and stretching with the rest of the class, meaning standing up. Instead of sitting by myself in the corner doing stretches on my own. I got a lot of comments of "our baby's growing up!" when I moved up to the big kid stretches haha. I love my group. Especially a super sassy lady who told her doctors they need to stop practicing and actually do something. Hee. I love her to pieces.

And now I'm going to take a moment in shameless advertising.

If you're in the Denver area and you have a cardiac issue (surgery, attack, warning signs of either, POTS) and your doctor wants you to do rehab for it, please, please, please go to the Cardiac Rehab unit at Lutheran Hospital. You may use my blog as reference. They have different class times so whatever works for you, they have nutrition classes, stress management classes, counseling and it's all under the program so it's paid for. Every nurse and physical therapist there are the kindest, most supportive people you will ever meet. I'm dead serious when I say that God sent me there. They're wonderful and hilarious to work with. Trust me. If they can put up with a 24 year old with five chronic illnesses and a million and one questions and concerns they can help whatever it is you're going through. I'll bet that after me they'll say they've seen it all.

And Then There Were Five

I just found out that I was diagnosed with Ehlers-Danlos Syndrome, which nixes out Hypermobility and Undifferentiated Connective Tissue. Down to just five chronic illnesses! I'd make a list of all the wrong diagnoses I've had but it's getting ridiculous so we'll just skip that step. It's taken a total of twelve years from start to finish (theoretically. If we're done with this ridiculous exercise on patience that I don't have.) to get the full picture. We're down to Celiac (autoimmune), Hashimoto's Hypothyroid (autoimmune), POTS (autonomic), Gastroparesis (autonomic) and Ehlers-Danlos Syndrome (autonomic ish? It's a genetic disorder that attacks different things in the autonomic nervous system and collagen. But you go to a Rheumatologist typically for general treatment so it's a little confusing. No this isn't caused by attack T cells gone haywire, basically.).

There are different types of EDS so we need to narrow it down. I'm calling my Rheumatologist tomorrow to talk about it all. Basically it can affect skin, blood vessels, joint flexibility and mobility. Very genetic so my brother and sister need to get checked for it too. The skin bit is it can cause the skin to bruise easily, skin to be more thin and almost translucent (haha, sound familiar? Miss whiter than scar tissue here), blood vessels are small and fragile (making it harder for IVs or blood draws as well as finding a pulse) and in some cases put them at risk of rupturing. The joint bit is hypermobility just more specific. Joints can dislocate fully or partially, joints pop all the time (heh) and you can have connective tissue issues. This disease, from what I've read, is in kind the grey area between autoimmune and autonomic. It's pretty rare (naturally). Yes, it's chronic. Yes, it's genetic. Meaning there is no fix or easy solution, just something you integrate into daily life like any other lifelong illness.

As with all of these illnesses, they're not going to go away. I've gotten some questions lately so sorry if I'm repeating myself. There is a VERY strong chance, and seeing as it's me I'd say it's a guarantee that if I had kids they would have one or more of my illnesses or one that runs in my family. I want to be a mom (in the VERY DISTANT future) but there's no way I'm playing this game again and I'm not putting my mom through it again either. I'm planning on adopting. That's a conversation I'll have to have with whatever guy eventually decides to consider a life with me. Or something I might decide do on my own at some point. No, none of these illnesses are contagious or sexually transmitted. The only way anyone would "catch" these from me would be if they were my child. Or grandchild.

I want the full picture of absolutely everything going on and their ramifications for now, five years down the road and the potential hazards I'll have to keep an eye out for in future. I'm not stopping til this shit is completely locked down. Twelve years. This is ending and it's ending now. This summer I turn 25 and there's no way I'm spending another year playing the rounds with different doctors.

If you couldn't tell I'm a little peeved, sorry. I looked up EDS and there was a pamphlet online. It listed wrong diagnostics for EDS and two of them were, "Growing pains" and "It's all in your head". And this is socially acceptable?? In med school do they literally tell students that it's ok to feed this kind of crap to a sick patient? I've gotten both of those as well as a looong list of auto immune diseases that I've decided are just what they tell people when they frankly have no clue what's going on. I get that EDS is rare. Got it. Check. But since it's a disease that's internationally recognized as real, not to mention serious, maybe if a patient has every single symptom in the book you could consider running the very simple blood test for it instead of lying to cover the fact that you don't care enough about your profession to put in any real effort.

I feel like if I see a new doctor I need to make a print out of everything I have going on, sit them down like a child and watch them read it before they're allowed to touch me. Or poke. Or tase. I know that in some districts they make cops have a taser used on them before they're allowed to carry one. Can they do that with doctors? I know nurses try to follow that idea to an extent, in terms of trying barium, charcoal and other "drinks" some patients have to take for different reasons. It's just a suggestion.

Small Victories

Today was my first small victory, and as small as it is I still smile about it. Up til now every time I went to my cardiac rehab I'd have to sit down and rest after setting up my heart monitor because my heart rate would be around 140. Today I got to start right away and it took some work to get my heart to my target rate. That's a huge difference for me.

Realistically, yes I still have a long way to go before I'm back to normal. Yes, by the end of my workout my heart was a little mad. Yes, it wore me out and I had to rest.

But after my workout, I stretched standing, which I literally haven't been able to do for years. It was one of those moments when I felt the smallest bit like my old self again. My hands went straight to ballet mode and it made me smile. I used to get so many notes in every other dance class to stop using "ballet hands". My flexibility is nowhere near where it used to be, but I still have both splits and I can stretch without blacking out. To make it better, in a couple weeks I can start resistance stretching and small weights a little after that. I guess the biggest victory in this is that I don't see myself in medical limbo anymore. Today was the first day I saw improvement, the first day I felt like the person I used to be. Maybe with some work I can make it back to being that person, I hope so at least. After being sick for so long it's going to be strange coming back to "normal" life. And hard. Relating to people that say things like, "I left my coffee on the roof of my car. God hates me. I can't take it." (and yes, that's a direct quote) is almost laughable. I want to reply that God has so many more issues to deal with that the placement of your morning coffee and the minor detail of you spacing it out.

I think it's a blessing we don't know the future. Things that I thought were the end of the world years ago just make me laugh now. I feel like the small catastrophes in our youth are there to strengthen us for the real challenges in our futures. I thought getting diagnosed with Celiac when I was thirteen and living in a small town in Wyoming was such a big deal, dealing with the idea of forever right when I entered the teen years. Eleven years ago if you said you had "Celiac" or that you needed "gluten free" people stared at you like you were speaking Greek. My family visited my Gram in New England and I remember asking a waitress at a restaurant if the clam chowder had flour in it and the waitress responded, "No, but it does have wheat, is that ok?". Really. Now, Celiac is insanely easy to manage, thanks very much to the Atkin's diet introducing the idea of burgers and sandwiches without the bun. Also, thanks to fad diet people taking the term "diet" a little too literally. I won't judge.

Something that one of my best friends said to me was that one of the good things coming from all of this is that it brought me back to what's important to me. After my spine surgery I walked away from professional dance. My surgeon was adamant in making sure I understood how serious the injury was and that professional dance was not an option with my back. Pretty sure when someone shows me an image of a vertebral disk cutting into my spinal cord I understand the severity of the situation, but I appreciate the gesture. The whole thing could have ended so differently, and I will never forget the people that fought to make sure I didn't end up in a wheelchair. The surgery was done microscopically, so even five to ten years ago the surgery wouldn't have been a possibility. My scar is only a little over an inch long (right next to a freckle that my doctor teased was his "landmark"). It's so small that I joked with him, asking for a bigger scar. His answer was no, surprisingly enough, he didn't think a bigger scar would make my story better. I still think it would have. When I came back to school people saw the scar and said, "Oh, I thought it was a serious surgery...". My surgeon used internal stitches and surgical glue to seal the incision so the dressing that I had to change out was neosporin and a bandaid. Literally. So incredibly anti-climatic. I actually had one friend say, "Oh sweetie, I understand how hard all of this is for you. I had mono." Somehow with the surgery being performed microscopically it was downgraded to mono? I'm not sure I'll ever understand the thought process behind that.

Looking back now, I think walking away from all of the arts was a mistake. Yes, I love the law and I always will, but even three years later the one thing that excites and intrigues me is the arts. I still have music, I can write, I love playing with choreography and production and I think there's a lot of ground I could cover in the arts. I also think they're necessary. Not in terms of life or death, but in terms of release and expression. Being involved in something that is centered around bringing people joy and a break from whatever life is throwing at them is the most rewarding thing for me. Dance was always my coping mechanism, and I know that music and the arts do the same for others. We use music and movement and pictures to say the things our hearts need to express. It goes beyond words. To me, dance is the language of the heart. Before we spoke, we danced. Even if I can't be a professional ballerina like I used to dream, I can bring the arts to people. I hate the systems that medicine and law have turned into, but I can love them from a distance. I absolutely believe that everything happens for a reason. With all of this, literally everything that had an influence on me, money, a fit body, a career, my health and a lot of relationships were stripped away. I think I needed this to learn how to fight for myself, instead of letting everyone and everything influence my life. I listened to other people, peers, teachers, doctors. I followed their advice, even when it was toxic. I did what they said I should do without question and it was me that got screwed by it.

I don't know exactly what I'll do career-wise, I'm interested in almost every aspect of the creative process. It'll be interesting to see where life take me from here, and for the first time in a long while, I'm finally starting to believe it will happen. That's a victory worth celebrating.

Let's Find a Mountain to Climb

I hate being bored or sitting still for too long. Meaning about ten minutes. I like multi tasking, listening to music while studying; doing needlepoint while watching a movie or listening to music; working two jobs while going to school full time; taking on a subject to study just because it sounds like a fun challenge. If I'm not intimidated by a project or find it pushing me hard enough I'll get bored and drop it. It was slightly problematic in high school, especially with subjects I didn't like, but now it's just plain fun. The first thought that goes into my head when I see a big tree or a mountain is "how pretty", followed by "now let's climb it!". To make it more fun, even if there's a clearly marked path, I'll usually be the stubborn idiot that goes for the hardest possible way to get to the top. I mean that both literally and figuratively. If I'm in a slump, I'll go for a drive and look for a mountain to climb to clear my head. It was a lot easier when I lived in Wyoming and it was a fifteen minute drive to get into the wilderness (no exaggeration) and the mountains I climbed with my family when I was younger.

My thought today was that this experience has been one of those times where "Be careful what you wish for" comes into play. I didn't mean it this literally!!!

Oh well. I wanted an all consuming challenge...can't complain now that I've gotten it. Or at least I can't complain too often. Or loudly. Maybe once in a while under my breath.

One of my biggest goals is to beat my body into submission so that I can climb mountains again in the strictly physical (or intellectual. Just NOT medical.) sense. And go to warm places with gorgeous beaches. The outdoors are so important to me. Either my body lets me explore and play and learn about new cultures and religions and languages (and DANCE! Cultural dance is so incredibly fascinating and gorgeous and wonderful.) or I'll go back to the stubborn idiot mode, go anyway and deal with the feeling like crap consequences after.

When my mom was my age, she went to Fiji and the Solomon Islands. It's always been a kind of fantasy of mine that I'd have a destination wedding in Fiji. At the very least I'd like to go there with my family.

One of the problems of stubborn me is that I don't want to go to a country without knowing the language first. I really don't want to be the stereotypical American tourist who expects everything to be in English and American sized. I want to honor the country's history, their religion and their unique culture. I don't want to do tourist-y things, I'm interested in the reality of the location. Realistically, I know that there's no way I can learn every language I want to, but I can sure as h*ll try!

One step at a time.

Patience.

Ha.

Mountains!

Heart Health

Going into all of this I knew I was in for hard work, but I don't think I was fully prepared for what that work would be. When I think of hard work, all my experiences tell me it's going to be physically challenging. Like my ankle and spine surgeries. A little pain, some bruising, some physical therapy and I'd bounce back quickly. Growing up as a dancer, a runner, a hiker and a lover of anything outdoors, I'm in my comfort zone when I'm pushing myself physically. I know the steps, I know the rules and I just go for it.

This is so incredibly different.

And I didn't think about it. Physically, my heart's ok. Structurally, there are no issues that were found. So this isn't physically getting my body into better shape, I'm not even at the vascular level yet. We're re-training my nerves which is so much harder. And requires so much patience. Which I'm so sick of hearing about. I know it comes from love but I'm not a patient person and I really am putting in all my efforts into getting better. One of my cardiac nurses joked with me that I looked "determined" in therapy on Friday. Pretty sure that's just how I look in general when I'm focusing on getting something right physically, I got a ton of notes for that with dance.

I don't understand how the nerves are getting re-trained, but we've been following the protocol from the Cleveland Clinic to the letter. My first day in therapy, the Friday before last, just at standing my heart was higher than my parameters allowed so I had to sit before working on the recumbent bike. I had to go so slowly that the bike system kicked me out three times, but if I went any faster or talked my heart rate would jump up. Insane. My first week, I was allowed three therapy sessions that included twenty minutes of biking, followed by a five minute cool down while hooked up to a heart monitor. This is such a step down from what I'm used to that I wasn't expecting a challenge at all. Physically, there wasn't one. Even in my VERY deconditioned state it was fine physically. But my heart was tired. Walking back to the car I had to take a break and lean against a wall and then fell asleep the second I got home. I hope it gets easier with time, I think it will. I keep trying to remind myself that this was my first week doing therapy and I shouldn't expect results right away.

Patience, right?

Here's the thing. When I had ankle surgery back in high school, my ankle felt better in the hospital when I woke up than before surgery, even though it had just been cut into. And I got the typical, "What did you do??" reaction from my surgeon. But my ankle strength and mobility came back right away and I danced again shortly after. With my spine surgery, I stopped taking pain pills two days after the surgery and did really well in physical therapy, again bouncing back quickly. I think I get it from my family; we heal quickly and have high pain tolerances. I'm used to bouncing back right away. I'm used to being strong and nimble and tiny and taking multi tasking to insane levels. This is such a huge lesson in humility and taking things in stride. I also get the feeling that once I'm let off the leash it'll be something like letting loose a cannon. And I will have SO MUCH FUN when that happens!

First comes re-training the nerves though, which actually seems to be working. My heart's already doing better in therapy, even though I'm completely wiped out after. Then will come vascular training, getting my blood and heart working the way they need to and THEN comes the physical segment. The physical segment being the only one I'm confident about not looking like a total moron doing.

Another snag, besides the exhaustion, is that my chest's been feeling really tight and I'm short of breath, kind of gaspy. Which is weird. I'm reading up on POTS websites and people's blogs to see if this is normal and I emailed my doctors about it. We'll see what they have to say.

All of this heart mess reminds me of my Grandpa. I didn't get to know him as well as I would have liked, he passed away when I was six. But I know he had congenital heart failure. He also had Celiac. I wonder if he felt these symptoms, too? My Dysautonomia book says that the quality of life for POTS patients is similar to that of patients with congenital heart failure. I feel like he's been watching over me this whole time. I like to think so at least. There've been times when it seemed like someone up there was smiling at me, and I just picture Grandpa's face when it happens.

Gotta Love Insurance Companies. Sometimes.

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.

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.

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.