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.