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.
Sunday, December 29, 2013
Sunday, December 22, 2013
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!
~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.
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.
Wednesday, November 20, 2013
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.
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.
Friday, November 15, 2013
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.
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.
Tuesday, November 5, 2013
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!
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!
Sunday, November 3, 2013
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.
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.
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