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.

Altitude

Hi everyone!! I'm really sorry I haven't posted for a couple days. When my doctor in Cleveland said I'd do better at lower altitude I didn't really think it would matter since I've always lived at high altitude. And then I came back.

On the bright side, my mountains are looking stunning as usual.

On the not so bright side, I'm having a really, um, interesting time adjusting to the altitude change. I blacked out at the airport and I've been having the usual symptoms of tight chest, dizzy, falling and blacking out (apparently the medical term blacking out is syncope).

I promise to give you guys a full update with all the sarcasm you could want by the weekend.

Cleveland Clinic

If you ever have health issues and one or more doctor tells you it's either in your head or that they don't know what's going on or they say there are possibilities too rare to look into GET TO CLEVELAND. Obviously don't take the time and money for a hang nail, but seriously. If you have anything that's been ongoing and you're not responding to treatment, these people are brilliant, kind, serious and thorough to the extreme.

When we got the call giving us directions the nurse said there was no way we could miss the clinic and she was right. It's a huge group of buildings right past the university with a gorgeous fountain in front. They have people in red jackets directing patients to whatever area they need to go. It's intense. We went into the right entrance and crossed a little bridge to another building. Every single floor of our building was neurology. Pediatric, epilepsy, psychological, etc. We went to the ninth floor that's for neuro-muscular issues. First a nurse did a precheck, then a PA-C came in and got the general picture. Both were really kind and the PA-C was from Colorado as well. Then the doctor herself came in and got the more detailed description of everything that happened. Dr. Browning wasn't like any doctor I'd had so far. She's very quiet and soft-spoken, not brusque or touchy feel-y at all. When she talks, you listen. She listened to everything, charting out the order of events and only interrupting to ask a clarifying question. She looked over all the records and test results I brought her, writing down the numbers to run against her own systems. She put the whole picture together in the two hours I was with her. She said without a doubt yes it's Dysautonomia and POTS. Apparently there are several types of Dysautonomia, so she ran a LOT of bloodwork (12 tubes. I had to take a lunch break to get my blood pumping enough for them to finish the draw. Oy.) and I'm doing a test on Thursday so that she'll have a better picture on how to treat. For the test they're doing on Thursday, they put a tan-ish, pink-ish powder on my skin and have internal and external temperature monitors on me. Then I go into a sauna. They'll check to see if my temperatures have any consistency and also they'll be checking sweat production. My last sweat test was literally a flatline. This one will see if anywhere on my body is sweating and if so which areas. I guess this helps them see which type of Dysautonomia I have. Good thing I don't have modesty issues after being a dancer. This is going to be weird enough.

Of course, since it's me, there are a couple other pieces to the puzzle that haven't been completely ruled out or looked into. There's a chance I have copper deficiency. I've never even heard of this. I guess it's pretty rare; it sometimes happens to people with gastric bypass. It's linked to Celiac, and can cause any and all of my "neuro" symptoms. I don't understand why no one looked at it since they checked every other form of malabsorption and malnutrition.

When I was diagnosed with Gastroparesis, I was seriously sick. We had to completely retrain my stomach on how to work, starting with a liquid diet for a month. I had half of a Boost (protein shake, the lowest in fat and fiber that we could find) six times a day. After a month we added a half a cup of rice or scrambled eggs a day with green tea. At first, trying to find a way to make Celiac and Gastro work was really hard, and getting used to actually measuring out half cups (I'd never paid attention to sizes before) took some getting used to, since that was the biggest serving size I was allowed. We got a juicer when I started improving and that's how I've been getting vegetables in. I still don't eat red meat, raw vegetables or anything high in fat or fiber. You'd think someone would look into every kind of absorption since even now I'm obviously not getting all the vitamins and minerals I should be getting through diet. You'd think.

Another option is a rare auto immune disease that my doctor wouldn't name. She's looking for that antibody with the bloodwork she ran. If she finds it she'll be treating with Plasma Pharesis. This is pretty similar to Dialysis, in that your blood is pumped through a machine and put back into your body. What the difference with this is that the machine filters out the plasma in the blood, removing the antibodies the body produces. The antibodies are what attack different cell systems with auto immune diseases. Sometimes this treatment is pared with immune suppressants to try to calm down the immune system and put it into a remission of sorts.

Something else that no one followed up on was towards the beginning of all of this. I saw an Endocrinologist who thought I might have Addison's disease (an autoimmune disease that attacks the adrenal glands), so she ran an ACTH stimulation test. For this test they draw your blood at the beginning for a baseline, and then they give you an injection of Cortisol (what the adrenal glands produce). After thirty minutes they do another blood draw and again after sixty minutes have passed. Initially, your numbers are supposed to start low, and they're supposed to go up by 18-20 micrograms per deciliter. My number started at 31, after thirty minutes went up to 35 and after sixty minutes went back down to 30. It ruled out Addison's but was a seriously abnormal result. We'd shown this test to every doctor since then and no one had seemed concerned or wanted to follow up. I kept all of my medical records and had them separated by doctor/hospital and in chronological order for Dr. Browning. She was going through all of them when she saw this test and she wasn't happy when she saw it. She said it either wasn't done correctly, or if it was, it needed to be looked into. She said it could be a huge contributing factor to everything I have going on. So when I make it back to Denver, that's in the works; go back to Barbara Davis and see the Endocrinologist I trust.

In regards to my POTS she's setting me up with the cardiac unit. They're going to do a full out evaluation including an exercise segment to figure out exactly what's going on with my heart. After the eval, they're going to give me a personalized rehabilitation program that I can take home to my physical therapist. This is honestly what I'm most excited about. I miss being active more than anything. I miss dancing and hiking and running and Pilates. I've been seeing a physical therapist who I really like and respect and I think he's been as frustrated as me with this whole process. Until he had a clear diagnosis he didn't really have a goal to work towards with me, and he really didn't like seeing me get worse instead of better. It'll be so nice to have a plan instead of guesswork. The only problem is that because the Cleveland Clinic's cardiac unit is so highly respected I'll have to come back in a month for this eval. It's the soonest I could get in, and that was with the awesome receptionist pulling favors for me.

I'm feeling so much better about everything. Yes, there are still details we have to hash out but on the whole I'm finally moving in the right direction.

I know this is a lot so if anyone has questions go ahead and leave comments and I'll get back to you.

God Smacks

No, I don't mean the band Godsmack in my title reference.

I'm trying not to offend anyone who is or is not religious, that's never my intent. Through my experiences my faith has grown so much stronger, but I don't talk about my religion. Faith is a very personal thing and it's really none of my business what anyone else believes or which practices they prefer.

That being said.

There's a joke in my family about God smacks. If you know me, you probably know how oblivious I am. I get really focused on something and I literally won't see/hear anything else. It's really handy for school and work but makes for one seriously socially awkward me.

With God smacks I have this mental image of a stick person walking down a path. God kindly puts down a sign telling the person what they should do. The person doesn't notice the sign, they're too busy watching the path. God tries again with a bigger sign. Again, it goes unnoticed. God makes a billboard with neon lights and places it in the middle of the road. The person walks around it and keeps plodding on. God finally gives up and smacks the person upside the head, pointing them in the direction He wants them to go.

That would be me.

Sometimes the smacks are gentler, like "See? Told you I'm looking after you". I told you about my numbness that started up badly yesterday. This afternoon my sister surprised me and came over to help me pack. Spending any time at all with her makes my day, she's my other half. We were born fourteen months apart and when we were little we had our own language. My brother's always been the classic older sibling and I've always had the idolizing baby sister syndrome. I love my family, they're everything to me. It was really good she came to help because my numbness and tremors were so bad I couldn't take things off hangers or put them back on. My sister hadn't seen my tremors before, she'd only heard about them. I think it freaked her out a little to see it, and I don't blame her. They freak me out too.

My arms have been numb all day, so I was mostly used to it around dinner time. When I stood up I lost all feeling in my legs. Mom came and helped me upstairs. I still can't feel my legs or my arms. In a way I'm glad. I want the people at Cleveland Clinic to see how bad everything can get. I want them to see how scared I am and how drastic the symptoms are. Maybe by not being calm and collected they'll be more willing to take my words at face value right off the bat, instead of waiting for seven tests first? Stranger things have happened. I'll tell you this for certain though, I will not end up in a wheelchair. I fought it off once and I will fight it off again as many times as necessary. Anyone who suggests otherwise gets to see the real meaning of a Scottish temper. My two clans are Leslie and MacIntosh. Their mottos: "Grip Fast" and "Touch Not the Cat Without a Glove". Fitting, don't you think?

Inappropriate Reactions

I completely understand that my reactions are as all over the place as my symptoms. I have a twisted sense of humor, and there are times I enjoy pushing the boundaries just to see how people will react. I think if it's socially acceptable for a doctor to treat a patient the way I've been treated, it's perfectly acceptable for me to point out exactly how full of shit they are. On one hand, I hope there are people out there who've been through similar experiences and understand where I'm coming from. On the other hand, I never want anyone to have to go through anything like this. I have no problem whatsoever being the loud smartass if it means people wake up. There's no reason why someone living in America should have to fly across the country to find a doctor willing to treat based on symptoms who won't run away from a challenge. If me shouting and cussing and arguing and fighting makes the diagnostic process that much easier for people with lifelong illnesses then I will do it happily. Getting diagnosed with a long term illness at any age is hard; you taste your own mortality for the first time. It makes the term "forever" that much stronger, more concrete. More real. I read on an FDA announcement that the diagnostic process for Sjogren's has gone from an average of seven years down to four. And this is supposed to be a good thing? How many people have the time, money or will to fight that long for a diagnosis without giving up? Hunting for someone to listen, to take you seriously when you know something is seriously wrong with your body. If enough people tell you it's in your head, you'll start to doubt your own conviction. And because the insurance and pharmaceutical companies own everything in the US the doctors have to have blood work or a biopsy for treatment to get approved. The system is so screwed up. Medicine for profit is a joke. Doctors so often tack the easiest name on it, so wrong diagnoses happen far too often. It's disgusting. It needs to change. If the doctors won't step up and own their profession it's up to the patients. Get loud. Stand up and fight for yourself, no one else will.

I picked up the last of the records I needed for my trip to Cleveland Clinic today. One of them was the gastric-emptying study that diagnosed my Gastroparesis. All we'd heard at the time was the diagnosis from my doctor's nurse via phone. The actual results were interesting. I explained the test a little in my first post, but the gist of it is that you eat scrambled eggs that have radioactive something in them so they can track the progress through your stomach. According to the report, the average time for the stomach to digest the scrambled eggs is less than 85 minutes. After 323 minutes they ended the exam because my stomach still hadn't digested anything. From what I understand, the stomach has three main muscle groups, the top, middle and bottom. When you're eating the top is open and the bottom closed. When you're full the top closes, the bottom opens and the middle contracts. (Obviously not a technical description, sorry.) With Gastroparesis the stomach doesn't do the normal digesting process. No wonder I got so sick, drinking that much coffee and it all just sitting in my stomach. Blech. Sorry if I just grossed anyone out, I definitely just grossed myself out. 

I was reading the report walking back to the entrance and kind of cackled when I saw the numbers. I got a seriously angry look from a doctor. He calmed down when I told him, "It's ok, this is my report. I'm allowed to laugh at how ridiculous my body is". The concierge guy heard and laughed too. Glad my sarcasm provides amusement for someone other than me. Can I please find a doctor that gets this angry and protective over me? That'd be sweet. Just saying.

When I tell doctors my symptoms jump all over the place I get this look of "That's nice dear" and almost feel like they're resisting the urge to pat me kindly on the head. It's a good thing they don't, I don't think punching the doctor would earn me any useful treatment plans. Even if it'd make me feel better. Would it be too much to sit in an office and threaten to break something every hour they don't find anything useful? I'd probably get escorted off the premise. What I really want to do when this is all over is go to the doctor that told me it was a confidence issue, hand him the diagnosis and tell him to look me in the eye and admit that he fucked up. Public shaming is also an option. One of my best friends had a brilliant idea. Acting agents only get paid if their clients get hired and paid. How about doctors only get paid if their patients get better? It makes perfect sense to me. Insurance companies will only approve physical therapy if there's noticeable improvement. Doctors should be held equally accountable for their work, in my mind.

When doctors tell me, "Well your ______ [insert medical exam here] was all over the place. It wasn't stable the way it's supposed to be" they probably expect some kind of surprised reaction. At this point I just laugh. And then get disapproving looks. I'm supposed to, what, cry? Beg for their merciful help? I know they're all over the place. I figured that much out on my own, funnily enough. When I go from shaking under two fleece blankets and two down comforters in a onesie (and I wonder why I'm still single) to feeling like I'm going to pass out from the heat and then back to freezing cold in the space of five minutes I'm pretty sure it's not normal. Or when my arm, stomach, legs, hands and chest all have their own temperatures. And since my darling body doesn't sweat it's all just baking. No, sir, I had no idea my symptoms were atypical. I needed you to explain my body to me, thank you ever so much. I've just been going to every specialist I can find because wasting time and money is so gratifying. Tasers are fun. As are morons who can't find the veins to draw the blood work, even after I've told them which needle to use, at which location. Instead of telling me how royally screwed my body is, perhaps we could move on to the part of the conversation involving some kind of treatment plan? Maybe? And by treatment, I don't mean suggesting I wear socks when my feet turn purple and go numb. How much am I paying you for this visit again?

I'm joining an MMA gym when this is over so I can resist the urge to smack idiots upside the head.

Today the weird numbness and tremor-y symptoms came back in full force. They've been off and on for a couple weeks now but I stood up to pet my mom's dog and both legs went numb. It's a good thing I learned how to fall without hurting myself in dance classes. One of the most useful lessons I've ever had; I recommend it to anyone as skilled at tripping over their own feet as I am. So mom helped me get upstairs and once I laid down my legs felt fine but everything from the waist up went numb. And the second my head hit the pillow I had one of those sleeps where you literally pass out for about four hours. I woke up with my right arm having tremors.

On the bright side, getting ready for bed with numb arms and hands is a funny experience. My brush went flying three times and I knocked a cup off the counter seven times. The whole time I in there I was humming "I Feel Pretty" from West Side Story.

Musicals teach us so many useful lessons in life. Truly. When I finally have a treatment plan my reaction will be the opening scene of The Sound of Music. Once I find a pretty grassy hilltop with my mountains in the background. And a nun's habit. And a pretty little creek I can hopefully avoid falling into while I dance around on the stones.

Chaos.

Well we got the report from the EEG specialists, and the one word they had to describe my brain activity was "chaos". Which is really close to what doctors have said about my heart, my endocrine system and my autonomic system. We already knew my immune system is a homicidal b*tch, but she's actually been behaving relatively calmly with this mess. Unless it was all triggered by one of my auto immune diseases (highly likely) in which case I'm going on immune suppressants for life.

Basically what this new report says is that in the brain you have two "Insula" (Insular lobes, Insular cortex are two other terms for it) tucked around the temporal lobe, and these regulate autonomic responses. Like with many sections of the brain the right and the left control different things, and typically one side is dominate. (All of this is what I was told. I am not a doctor, a nurse, a PAC, a physical therapist or in school for any of the above professions. If the information is wrong it's my interpretation and my mistake.) With my brain both sides are active and messing things up. There was a section on my EEG that was supposed to stay stable (started at 5.5) and jumped all over the place.

Do I really understand any of this? No way in Hell.

My doctor's interpretation of everything was a couple possibilities (as ever). First, sometimes the brain acts like this when there's a tumor in the pituitary gland. They're really hard to diagnose, but rarely cancerous. This said, they still have to be removed. Through the nose. Egyptian style. If this happens I'm making an Egyptian playlist. I'm open to song suggestions.

Also, as my cousin and I were joking about, if I end up having brain surgery as well as spine surgery, the next time someone complains to me about a cold or mono they will have something thrown at them. I have good aim. You've been warned.

A pituitary tumor would explain all the endocrine symptoms. One of the other possibilities is something else endocrine that's been missed; since there are literally reams of tests for the endocrine system that HAVEN'T been done honestly anything's game. It could be anything and speculating would just lead to hyperventilating and freaking out after reading pages of horror stories. I'll pass.

The other option (so far..) is something autonomic or neurological that somehow nine neurospecialists missed or didn't follow up on. Would I be surprised? No.

Essentially, we don't have any new information, and we won't until Monday at Cleveland. I'm trying to keep a sense of humor about this, and the love and encouragement I've been getting from everyone means more than you could ever know. I've stopped counting the odds against all these insane diagnoses, there's no point. I'm in the billions. Of billions. Every doctor I've seen (that listens) has told me they've never seen anyone with this many auto immune diseases, even though the diagnoses were done by biopsies and can't be refuted. Having something like this happen to you is the most humbling, terrifying, isolating experience. You lose the ability, and the want to judge people. You can never know what horrors they've seen, faced, fought back, overcome. I've seen the purest courage and resilience in the eyes of a three year old. My point is be kind. Enjoy your life. Love those your heart tells you to love, not who society says is "appropriate". Society is full of shit. Be yourself, because at any second of any day you could lose it all.

Live without regrets. If you've screwed up, find the courage to admit it. Live so that if, God forbid, your life is taken from you, you can look back without what-ifs clouding every experience.

Distractions.

One of the hardest symptoms to deal with is my sleep disruption. I go days without sleeping and when I finally pass out the sleep isn't restful at all. This leads to a lot of Youtube browsing and reading up as much as I can about Dysautonomia.

The former reminds me how much I love the entertainment industry. Professional dance is out of the picture, in regards to dancing in a company, but the industry is literally exploding right now. Sound and music have always been one of my passions in life; my brother and sister and I were all heavily involved in music growing up. We sang in three part harmonies; nerdy sometimes, yes, but it made Christmas time so much fun! I was in audition only choirs from the age of nine all through high school. We all sang, played the piano and we each had our own second instrument. I still remember my brother's tuba case being bigger than me (I've never been a tall person. I was a preemie baby and I don't think I've grown a centimeter since the eight grade.). Another thing I found a love for was the changes in movement technology. While I was still a Dance major we worked with movement technology, and it's absolutely fascinating to me. One night when I couldn't sleep I watched a thing on the making of the last Harry Potter (told you I'm a nerd.) and I loved how they did the scene with the seven Harry's. My own experience with this work is really limited, but I'd love to learn more about how it all works. Even though I know I have a lot of work to do before I'm well enough to sink my teeth into starting a new career it helps that I have something to look forward to. Entertaining has always been a passion of mine and working in an industry where I can work with everything that interests me, and that is constantly shifting and evolving sounds like enough of a challenge to keep me happy. My not so inner nerd can play with historical events, writing, photography, sound, music, movement choreography and technology. It's something to keep my mind off of anything health related.

I just got a book called "POTS Together We Stand, Riding the Waves of Dysautonomia". I'm usually not at all interested in books that have encouraging little snippets from people who haven't had a sick day in their lives. This one's different. It addresses every aspect of the disease from people who have it and different stages of life; teen years, going to college, traveling with POTS, moms' points of view, that kind of thing. I couldn't sleep so I was reading and I want to share a quote just because it made me smile. This is from Chapter 8, discussing Dysautonomia and grief, written by Michelle Roger.

"I hate those saccharine sweet lines like 'When life gives you lemonade'. Do they realize the steps in making lemonade? First, get the energy to get up out of bed. Second, get the energy to care that you have to make lemonade. Third, try and find a recipe book. Fourth, get your brain together to remember why you have the recipe book. Fifth, grab a coffee to get your brain going. Sixth, forget the reason you had the recipe book out again and tidy up the kitchen. Seventh, remember something about lemons. Eighth, remember obscure fact that Liz Lemon is a character on 30 Rock, and sit down to watch taped program forgetting lemonade completely."

It reminded me of a conversation I had with a friend at the law firm I worked at. He asked me, "How do you get by when life keeps chucking lemons at you?" My response? "Learn how to dodge."

Let's talk health. Sorry I've been out of touch!!

Hi everyone!

I decided to start a blog for my friends and family. And possibly anyone with weird, rare, obscure auto immune or autonomic diseases who've had to fight for their diagnoses. I'm with you. I've been out of contact for a while and I want you to know why. For the past year and a half I've been struggling with my health and just when we think we might have the full picture/full diagnosis/anything solid some specialist finds something new.

Everyone that knows me knows that I have Celiac disease, I've lived with it since I was thirteen. It's not a big deal. I also have Hashimoto's Thyroiditis (hypo), Sjogren's syndrome and Hypermobility. All of these are auto immune diseases that honestly are pretty low grade in the scheme of things, but like with any auto immune disease they're all connected and can trigger new auto immune or autonomic diseases. It's easier to explain here than through text or facebook chat so if you already know what I'm talking about I'm sorry, please bear with me. Auto immune diseases are hereditary (not contagious unless you're my child. Which you're not.) and basically it's your immune system seeing a cell system in your body as foreign and is therefore trying to eradicate it. The autonomic nervous system controls the things we have no control over: heart rate, internal temperatures, brain function, blood flow.Autonomic disorders can sometimes be triggered by some auto immune diseases such as Sjogren's.

Celiac disease is based in the small intestine, with the finger-like villi that line the small intestine. They absorb nutrients, and when someone with Celiac eats anything with the gluten protein (wheat, rye, barley and some oats) the immune system attacks the villi, causing them to shrivel and stop absorbing the nutrients. You see the problem there. Hashimoto's is the auto immune version of thyroid disease, meaning my immune system attacks my thyroid gland. With Sjogren's, the immune system attacks the "moisture glands" like tear ducts and saliva. You treat typically with eye doctors and dentists. Hypermobility's pretty self explanatory...your joints extend more than ten degrees past the point they're supposed to causing lots of damage to soft tissue, joints and muscle. All of these were diagnosed for me before or around high school, and once you get into the routine they're nothing to complain about. Unless your thyroid acts up and you lose hair and eyelashes, but hey. Falsies are our friends.

I started getting sick (again) last October. I was working as a legal assistant in a law firm downtown (loved it) and I think I drank about four to five cups of coffee a day. Healthy. I started having issues keeping any food down, I was tired all the time and I had sharp stomach pain. I lost twenty pounds in a month and got so sick that I ended up having to quit my job. I saw a Gastroenterologist who did all the typical tests: endoscope, colonoscopy and biopsies and when he didn't find anything his PAC suggested a gastric emptying study and small bowel study. The s.b.s. is a test where you chug a barium drink (it looks and tastes like chalk. Or what I imagine chalk would taste like.) and then they monitor how the liquid moves through your system to make sure there are no kinks in the intestines. There weren't. The g.e.s. involved me eating scrambled eggs with some kind of radioactive something put in (yummy...) and then I laid on a table on this machine for two hours while it recorded the food to see how fast it moved through my stomach. It didn't. Literally. I watched. So diagnosis number one after four months was Gastroparesis (sounds pretty self-explanatory. Your gastric system doesn't work.). Gastroparesis is autonomic. A lot of the medications for Gastroparesis have really bad side effects, so the PAC I saw (wonderful, brilliant woman who gives the best hugs) told me about a website where I could get a medication called Domperidone from New Zealand. Domperidone was taken off the market by the FDA. If you're pregnant or breast feeding don't take it - it'll go into your baby and no one wants that. I'm not pregnant though, so no issues there. I think the reason behind the FDA taking it off the market is Domperidone went straight to generic, meaning no money for them or the pharmaceutical companies. I have issues with the FDA, the pharmaceutical companies and insurance companies so I'm totally cool getting my medication from New Zealand. When they feel like funding research or approving medications for children with rare seizure disorders or, oh, auto - effing - nomic - or - immune diseases, for example, maybe I'll change my mind. Til then, I'll use the medication that works the best with the least side effects.

In January, I started having weird neurological symptoms. Numbness in my arms, hands, feet, never predictable, no pattern. I felt like my heart was always racing, I was always tired but I never slept well. My balance and muscle strength dropped (I danced ballet for 18 years. I've never had balance or strength issues. You can't do pointe if you have balance or strength issues.) I started having issues with vision, especially at night. I'd get blurred or double vision and have issues seeing different colors. It got to the point where I couldn't read or do needlepointe, my two favorite things. You can imagine what this did to my temper (if you know me. If you don't, well, I have a temper. I'm Scottish on one side and Italian on the other. God bless the man I marry.). So I started seeing neurologists. Plural. We started with testing for MS, which led to testing for Myasthenia Gravis. I ended up seeing literally nine neurologists, all top ranked in Colorado and the U.S. and well respected in their fields. Most of the respect was deserved.

Every single doctor decided it was something, and sent me to the next doctor for "another set of eyes". It turned into a game of he-said-she-said. The general opinion was that it was Myasthenia Gravis (rare, auto immune, attacks the connection between neurons and the muscle). So then began the fabulous testing to prove it. I had three EMG's done. One regular, two repetitive-stimulation. The rep-stim tests were especially fun. They get a machine (I viewed it as a taser that they used with gel so your skin didn't burn. Which is a plus, I guess.) and shock a specific muscle (my lat on the left side first time, right the second) and shock nine times in a row. Then you use the muscle, they repeat the shocks right away. Wait five minutes, shock again. Lovely experience, truly. Highly recommended. Not. Of course since it was me these tests showed nothing. (Hmm, is this a hint it might not be mg? NO! Doctors are always right when they pin you in a box on the first try!)

When the doctors saw that my tests were negative it had to be my fault. Here came the highly complimentary comments such as "Autonomic disorders are so rare I don't see the point in testing for them"; "I really don't see a reason for physical therapy, I mean, you're not in a wheelchair.." and my favorite, "I'm going to talk to you like I would my granddaughter. [I had grandpas. Two of them. They passed away. Thanks for the reminder. Jackass.] I think this is a confidence issue. I suggest going to a gym and seeing a counselor to boost your confidence." He was even smart enough to put it in writing for me. *Insert legal assistant evil chuckle* When one doctor suggested one more rep-stim EMG on the muscles on my face (Here's a fun game, let's tase your face first. Then talk.) I walked away.

It got to the point that it was completely beyond ridiculous. I know my body. I've lived in it for twenty-four years, with several lifelong illnesses diagnosed at a young age. I know when something's wrong and to this point I haven't made a wrong call yet. When my ankle was bad in high school, the surgeon went in and found exactly what I told him he'd find exactly where I'd pointed. When my back was bad after a dance injury and someone listened long enough to do the right testing, they found a fractured vertebrae with two blown out disks, one cutting into my spinal cord. Just because I refuse to be the idiot screaming and waving my arms around in the ER does not mean my symptoms are fake. It does not mean I'm having a moment of feminine weakness, that I'm being dramatic or faking this for attention. When you've been sick for a year, have lost your job, moved back in with your parents, lost all the savings you worked twelve to fourteen hour shifts to earn and have lost contact with the majority of the people you love it is NOT for attention. When you know there is something seriously wrong that you need help with, all you can do is look until you find a doctor willing to listen and to treat based on what you're saying, instead of what their shiny medical books tell them. I can't tell you how many times I was told, "Well, that just doesn't sound like Myasthenia Gravis.." Sir, I'm not trying to sell you on m.g. I'm trying to tell you my symptoms. If you remember, the MG was your idea, not mine. You're the doctor. I don't care what name you tack onto it I just want my life back. The human body doesn't read medical texts to find the symptoms it should present, it can wreak the kind of havoc Hollywood would be proud of all on its own. I'm lucky enough it's not cancer. These morons would have killed me before they found it.

My mom and I decided to give doctors in Colorado one more chance before we went on a roadtrip. We specifically looked up neurologists who weren't affiliated at all to the network I'd been seeing. The woman we found is from Hungary, got her second med degree here and is honestly one of the most brilliant people I've ever met. I can't explain intricate neurological disorders in my own language much less in a second. I don't know how she does it. She ran a whole new ream of tests including a spinal tap. No tumors, cancer, MS or brain swelling. What she did find was Dysautonomia and POTS. She found that my Autonomic system was in a complete downward spiral and that my heart rate was all over the charts. I didn't react well to the beta-blockers, so my doctor wanted me to be the first in a program she was emulating from the Mayo clinic where she did a second internship after her second degree. Basically, they do comprehensive care and physical therapy monitoring your heart and symptoms til your body gets back to the way it's supposed to be. It sounds absolutely perfect. The problem? It was based at the hospital that the doctors I'd previously seen worked at. And the wellness center never returned my calls. (Maybe they felt the angry vibes I was sending their way. Stranger things have happened. Or they weren't interested in the program because it's "so rare".)

Back to square one. My mom is a brilliant researcher so she started looking for other forms of therapy I could try for my POTS. She found that Biofeedback has been used to get your heart under control. Biofeedback is a relatively new science. The idea is the brain is so smart that if you show it what isn't working in the brain or the heart the brain can fix the damage. This is way over my head. My mom has a master's degree in special education, and she's done work with this. She's seen how children with some of the more awful diseases like Cerebral Palsy can overcome some symptoms to allow better movement and communication. This is real. So we found a team of two women who do Biofeedback in Colorado and they did a full exam on me. During the test I was sitting in a comfy chair falling asleep and I couldn't see any of the data from the EEG they were running. Mom could. One of the doctors took her out of the room and I started getting questions like, "Have you ever had a seizure?" "Have you ever had a brain scan before?" "Did you fall and hit your head recently?". So comforting. Don't get me wrong, the two doctors who run this business are literally the kindest souls you will ever meet and they're nationally recognized for their work. But come on, even an idiot would know that's not a good sign.

Anyways, they finished the exam and brought my mom back in. Basically, the test was all over the place. The two hemispheres of my brain aren't communicating the way they should. One hemisphere would be doing one thing and the other would be doing its own deal. They think it has to be structural. Also, at resting my heart rate was at 118. I thought this was pretty good since recently it'd been around 125-145. Wrong. Apparently it should be around 50-70 for my age and size. Huh. On the bright side, I know the headaches and the pounding chest and dizziness symptoms had a really good reason for being there. Take that old "grandpa" doctor!!

I don't know much about the brain, but being around so many of my mom's students, I know that this isn't good. Typically the only reason the two hemispheres don't communicate is with epileptic children who've had the connection severed to help their seizures. I don't have any of those symptoms. I'm bilingual, I can still speak and write and type, I have no memory issues and I'm pretty sure I would've noticed a seizure in one of my twenty-four years. I've spent years around children with seizures and I've seen every kind. So unless I'm having seizures and I don't know it? I don't know. This was two days ago. The doctors are taking a week to compile the full report and giving me two copies so I have one and can give one to my doctors. I'm checking in at the Cleveland Clinic on Monday Sept 30th. I really don't care what it takes at this point. I've had a broken spine and a spine surgery. I wasn't messing around then and I'm not messing around now. If my brain's doing its own dance and my heart's working two to three times as much as it's supposed to I'm chilling (literally speaking. Hospitals are cold and those gowns do nothing for warmth.) in a hospital til someone does something.

Sorry for the book.

If you made it all the way to the end, I salute you.