This one might be a bit of a long post, brace yourselves darlings.
First of all, I hope no one reading this sees my writing as a poor me stunt. I started writing to let my family and friends know all the medical terms and testing I was going through. When I finally got my diagnoses, and we had a better view on how rare my situation was, my intentions changed.
Growing up, my mom gave me a book titled "Small Steps: The Year I Got Polio" by Peg Kehret. This poor book, like most in my collection at this point, is severely dog-eared by all the times I've looked to it for comfort. Reading and writing has always been focal to my life. I remember one time when I was really little, I ran to my mom crying. My big brother and sister were too involved with their books to play with me and I hadn't learned how to read yet. My mom's solution was to read to me and teach me how to read on my own. The written word has always been a source of comfort and escapism for me. The book I mentioned, "Small Steps", is an incredible book about the resilience of the human spirit and body. The young woman got diagnosed with Polio in her teens and was so sick she had to use the Iron Lung for a while. Eventually, using her small steps, she worked her way back to health. You can see why I found so much inspiration with this book. I adopted her mantra into my own life. If you need a "you can do this" book, read it. It's intended for a YA audience but wonderful regardless of your age.
I believe God (by whatever name in whichever language, or the universe, or karma, or whatever you believe in) gives us warning and preparation for what's to come. Sometimes we can only see the signs in retrospect, but I firmly believe they're there. This was one of mine. Understanding the battle, the patience and persistence necessary to fight and claw your way back to health became all consuming. One step at a time. It became a way to coach myself. Just take this step. This one step and then you can relax. See this one doctor. They have to see the symptoms. They have to understand it's real. You can't fake your heartbeat or your stomach not functioning. You can't fake blood pressure. One more try.
Always, one more try. One more step.
Reading books by people who's bodies turned from their outer self to the enemy became a form of therapy. They did it. If they made it work with their terrible situations, so could I. I hope that my writing does that for someone. This is my new focus. To do whatever it takes to help raise awareness and support for rare diseases. Use whatever medium I can get my small hands on to get the necessary message of empathy and support to those that need it.
And pity the poor fool that dares to tell me it's too rare to look into. Don't ever tell me the odds. I will shove them down your insensitive, ignorant throat. I beat the odds every single time they were stacked against me, and I'll help others do the same. You're welcome to watch as long as you don't get in my way.
I graduated from Cardiac Rehab yesterday. I even got a diploma that I totally plan on framing. I found out I was graduating on Monday. Monday night I had a panic attack. For the past twelve years, every time I've felt like my health was starting to get under control something insane came up and I was back in a hospital, trying to explain weird symptoms to a doctor whose only reaction was a blank stare. In those situations, I did my best to refrain from throwing things. I've killed so many phones by throwing them when I'm mad. Not the brightest plan. Blame my Scottish temper.
I don't trust my body anymore. I can't trust waking or sleeping that something won't go wrong (or pop out of place). But I can place faith in my team. In my nurses and doctors who are in my corner. In my mom and my incredible family and friends that form the best support system anyone could ask for.
One of the members of my Cardiac Rehab team heard that I was terrified of not being in the program and getting sick again. She pulled my full file and showed me the numbers so I could see exactly how much better I was doing. The results are crazy. Remember when I started? I could barely do five minutes on a recumbent bike, going so slowly the computer kept kicking me out. Now, I walk 45 minutes three times a week at 2.5 miles per hour. My blood pressure didn't change at all when I first started, and now it increases with workouts the way it's supposed to. I sweat again. Yes, that's strange to talk about but I promise you, no sweating is painful. The balance of internal and external temperatures is so important, and you don't even think about it til your body doesn't do it. Imagine your internal temperature burning up while on the outside your skin is cold. Weird. And not fun. So glad that's over with. I'm never complaining about sweat ever again. Ever.
Of all the things to be grateful for haha. Sweat is totally up there for me.
I was able to eat a whole half of a salad the other day! Speaking of awesome improvements. That was the first raw vegetable of any kind I'd eaten for over a year. AND I kept down a glass of wine. Woohoo!!!
If this keeps up my body and I might be able to get back on speaking terms. Wouldn't that be great?
Another thing I'm struggling with is how to get back into the real world. How do I explain in job or school interviews why I've been out of work and school for so long? Do I just say, "I was sick"? I feel like that leaves so much room for misinterpretation. "I have a heart condition" isn't necessarily true, but "I needed to retrain my Vagus nerve" is plain bloody confusing. Most people aren't aware there's such a thing as the autonomic nervous system; God knows I didn't before all of this! I kind of want to invent stories to make it more fun. "My shoulder popped out when I was wrestling with a whale." "A bear tried to take my bagel. I got it back We had a minor disagreement." (The bagel story I can't take credit for, it was one of my best friends' story of how he broke his collar bone.) "I was jumping on my bed and I saw a spider so I dove off the bed to get away. I dove wrong. By wrong, I mean I dove into the wall." "I worked retail on Black Friday. Do I really need to explain further? Those people are scary. And there were demon children. Demon. Children. I'm also deaf in my left ear now. I'm sorry, what was your question?"
One of the guys at CR, on his first day asked me if I'd had a heart attack and said I seemed too young to be there. I know it was said out of good intentions, so I didn't lose it. If I'd felt it was coming out of malice I have a lovely stash of sassy replies: "Aren't you old enough to know better than to ask something like that?" "You seem a little old to be that stupid." "#$&@ off" "Want to do a fun social experiment? Keep the condescension up. See what happens". I have many more with lots of bad words in other languages just because it's fun to insult someone in Chinese. I want to learn Russian and German just for when I'm mad. I know, I'm weird. You have to admit though; seeing a small, angry, Scottish woman shouting at you in Russian or German and throwing in random Chinese insults would definitely leave an impression. Hehe.
I asked my physical therapist what a polite response to "Aren't you too young for this?" is. I've been asked it so many times and I'm sick of it. My reactions are usually: giving them my best death stare til they back off, trying to explain everything in a short version that doesn't make sense because I'm talking too fast and I end up flustered, or I try to make a joke out of it that usually ends up insulting either me or the person asking. Or both. Ed's response was awesome. "I don't have a polite reaction to that question. Most of the people in CR are there because they didn't take good care of their bodies. You have a very rare combination of very rare diseases. They put you through hell to get the diagnosis and this is the best therapy for what you have. It's clearly working and they should focus on their own health problems. None of this was your fault and you push yourself harder than any other patient I've seen to get well. If I was there I'd tell him to fuck off." Nothing makes a girl feel better than a very tall man friend in their corner. Ed's been with me from the beginning, he saw how sick I was and I see him more like a friend than a physical therapist at this point. It was so nice hearing him defend me. He and his wife are expecting their first little one. He's going to be such a good daddy.
I understand that when people see me they don't see a "sick" person. It's the reason so few doctors or fellow patients take me seriously til they know me or can see the test results for themselves. When I'm in pain I usually lock my jaw and ignore it. (My dentist loves that, I'm sure.) My only sign that I need to do something for the pain is when I start throwing up or get shaky from it. I'm more likely to push too hard then to slack off (one of my best friends jokes about beating me over the head at the gym if I push too much). Patience is the hardest thing for me. I already have a pretty short fuse and I have a small (ish) tendency to be hard on myself. Excuses and whining annoy me. I know I have a lot of faults that I need to work on, patience being close to the top. Another is I care too much about too many things. After being this sick I want to take care of anyone who is hurting. It would be easier for me to take their pain so they wouldn't have to carry it anymore because I can't stand watching people hurt. I have a seriously overactive momma bear instinct. I wish more people had empathy. I certainly wish more doctors had it.
Before all of this happened to me, I never admitted I had fear. Even to myself. Not knowing what was going on with my body, knowing something was wrong but being told my results were "normal" taught me the taste of fear. I've never been a vain person, especially when it comes to physical appearance. It's hard for me to fight for myself. This, along with the fear compounded so much that I was almost crippled by it. I started to believe that the doctors were right, that maybe it wasn't real and I should try the anti depressants several doctors suggested. It wasn't until I learned to acknowledge my fears, to give them names and accept that I was afraid, that I could grow from my fears and rediscover the strength I used to take for granted. Accepting that I was afraid somehow gave me the courage to overcome the experiences. By accepting, I wasn't saying by any means that I was ok with what I'd gone through. It was almost like I was giving myself permission to be upset, permission to say the whole thing sucked and I was mad as hell. It became cathartic.
People have told me my story inspires them. That encourages me to keep pushing, to keep healing and writing. If my story helps even just one person overcome their own health problems, it'll all be worth it to me. One thing I need to say, though, is that my mom is the one who deserves the majority of the credit. She absolutely refused to give up on me, and refused to let me give up on myself. I don't know what would have happened if we hadn't gone to the Cleveland Clinic when we did -- I don't want to know. I know it makes me uncomfortable when people say my success is due to me. It's not. It's due to my mom fighting for me every second of this process. It's due to my family; my sister, brother, dad and stepdad and their support. It's due to the doctors and nurses and Ed for taking my word at face value and not writing me off. It's due to friends sending their encouragement. I'm blessed by the people that surround me. My success stems from them. I couldn't have gotten better without them. If they say otherwise it's very kind but not true. If only because I say so, damn it.
I understand that at some point I'll have to take some credit for getting better. I need you to understand I will fight off that moment as long as humanly possible. I can take credit for my temper and for my stubbornness. Once mom convinced me to fight, I fought. I fought for her, because I know for damn sure she fought like hell for me. I would take a bullet for my family (and I consider my friends family), literal or metaphorical. I definitely prefer the metaphorical scenario, but still. I know that seeing me as sick as I was hurt loved ones as much as my symptoms hurt me. This was my biggest motivation to get better. If I can help it, I'll protect my loved ones from pain, physical or emotional, whenever possible. So I locked my jaw and took those small steps. Eventually they added up and I was (finally) on the right road again.
I'm not at 100% yet; I still have my work cut out for me. Now that I'm up to 45 minutes of exercise without having my heart spike over 150 BPM, I can start interval training to add speed and incline. I can also try out adding other forms of exercise in slow segments while watching my HR on my own monitor. Since I "graduated" from CR, I'm moving to the independent work classes. There will still be nurses there watching us and monitoring our oxygen levels and pulse, but this class only meets twice a week and I no longer have to to attach leads to my hyperactive skin. No more red spots on my chest!! Maybe soon I can start doing at least the barre segments of ballet classes. I guarantee the first class I take I'll end up crying before, during, after or all of the above. Happy tears of course. And as soon as my shoulder stops trying its hand at flying I can start MMA to vent off Scottish temper steam.
Later on, when I trust my body a little more I'm going to get a small heart tattoo on the side of my right wrist. I'm also planning three more tattoos that are quotes. I want to get "Excelsior" right under my heart on my rib cage; "Though I walk through the valley of the shadow of death, I will fear no evil. XII III.II.I" (The "XII" is for the twelve years it took to get my final diagnoses, the "III.II.I" are for my three auto immune, two autonomic and one genetic illnesses. It's not a reference to its place in the Bible.) on the right side of my torso; "I am the master of my fate, I am the captain of my soul." on the inside of my left bicep. These quotes were some of my biggest inspirations.
There's a quote from Nelson Mandela, who I respect and admire with every fiber of my being. The quote is, "There is no easy walk to freedom anywhere, and many of us will have to pass through the valley of the shadow of death again and again before we reach the mountaintop of our desires". It's one of my favorite quotes from the incredible man. Then again, every time he opened his mouth to speak pure beautiful brilliance came out. I have a lot of favorite quotes from him, but this one in particular stuck with me. At some point I plan to take a trip to South Africa to pay my respects at his grave. The brave man who showed us true courage, empathy and the most open heart the world has ever seen.
This experience has been such a roller-coaster physically and emotionally. I thought I was prepared for whatever work I needed to do for cardiac and physical rehabilitation, but now I see that as insanely naive. I also didn't even think about the emotional aspects of getting diagnosed with a total of six chronic illnesses. The idea of of forever with three new illnesses. This experience has taught me so much about myself and the person I want to be. I learned for the first time that it's ok not to be perfect. There is no cookie cutter reality in life. Nothing is set in stone. Admitting you're afraid doesn't make you weak, it makes you honest. And people show their true colors when someone has anything more serious than a hang nail. All I can say is if you can find it in your heart to be open to new possibilities, if you can open your heart to every facet of your journey it will make everything worth the pain.
I'm still alive. I have another chance to make the difference I want to make. Another chance to meet new people and find new adventures, make more mistakes. Learn more languages. Immerse myself into other cultures. Find projects that scare and intimidate me. Get into more arguments and cause more trouble. Shake things up. Push the boundaries. Laugh more. Love deeper. Fight more fiercely.
Let's have some fun.
Sunday, February 2, 2014
Saturday, January 11, 2014
Courage
Since I've started writing, some people have come to me with questions or their own medical stories. These both gut me to the core and fill me with so much awe for human resilience. I'm going to share a couple, without any personal details just to give you an idea. Please understand that when I talk about these, it's my interpretation and any wrong facts are my fault alone. Also, my mom has a master's degree in special education, and, being her daughter I've seen first hand some of the most incredible things. Incredible in both the amazingly beautiful and the amazingly ignorant form of the word. More on that later.
I have a friend who was diagnosed in their teens with Bipolar disease. For literally a decade they fought both the medications and all the social and psychological ramifications of having this disease. The medications are severe, I'm not going to sugar coat it. They can also add complications to other disorders or medications (like many heavy meds). My friend is now finding out that it might have been a misdiagnosis the whole time. It turns out that Hashimoto's Hypothyroid (sound familiar?) runs in their family, as well as other auto immune diseases on both sides of their family. Lythium, one of the medications, can affect Thyroid levels as well as other things. This person's TSH (a Thyroid blood lab) has been increasing over the years on the medication and THEY, not the doctors, the patient was the one to catch it. What do you even say in a situation like that. "Whoops"? A decade. An effing decade of misdiagnosis. So. Stupid. They don't deserve this. No one deserves this. The individual is now doing their own research to find the medical care they need to get their symptoms under control. This is one of my biggest pet peeves. When you're a teen not only do you have no legal rights but you don't have the independence to undertake this journey alone. You're completely at the mercy of the doctors and your families, and I pray to God that those individuals will do their jobs to protect you. It doesn't always happen, with or without the best of intentions and it's the teens and children who suffer from it. When we're in our mid to late twenties we've had enough experience and we have the capabilities to take things under our own control, legally, financially, medically. No one can hold us against our will and no one can prescribe medical treatment we don't want. Patient advocacy is a growing field that is so vital. Someone needs to speak up for the patients and for their families so that they don't get lost in a system that more often than not sees them as a bar-code instead of as a person.
I was gutted when I found out about this. In one way it would have been easier if I'd been the only one who'd had an experience of this kind. Years of misdiagnosis and disbelief. Every time I hear about a similar story it breaks my heart. I know how much you question your own conviction over the years, how much it shakes your core to be told over and over the symptoms are nothing. You need a counselor. It's growing pains. You're just an anxious woman. It's happening over and over again, to women of any age, to children and teens. What do they teach in med school, that it's ok to disbelieve someone because you, oh holy doctor, are so much higher above them? I guarantee if we were to look, you would bleed the same blood. Your chemical makeup is the same. You cry the same tears. The excuses are wearing thin.
Another story I have to share, is about a very young woman that my mom worked with. She has a very rare seizure disorder. When I met her she was three. She'd had over a hundred "stat" seizures. What I mean by that is that her family had to call 911 because of the severity of her seizures. She had hundreds of "blink-out" seizures, I'm sorry I really don't have a clinical name for them. Basically what happened was she'd literally blink, almost fall and catch herself and that would be the extent of her seizure. Another problem was her body wouldn't snap out of the seizures like typical patients do. There was one time she had an eight hour seizure. I hadn't met her yet but I remember how upset mom was. Mom and the patient's family thought they were going to lose her. Mom had to tell the doctors she was still seizing. The right side of her body was normal but the entire left side was locked. The problem was they'd already tried so many medications to try to stop the seizures that it became a balancing act. She had what I think of as seizure storms in her brain, imagine a thunder storm in a cloud. Because of this, the surgical procedure of removing a portion of the brain to stop the seizures wasn't an option; they were never localized.
Eventually she was diagnosed with Dravet Syndrome in New York.There's a serious danger with these children. They have full blown seizures, but their little bodies aren't meant to handle the amount of medication needed to stop the seizures. The hazard is either their hearts will stop or their brains will succumb to the trauma. Every time her caretakers had to give her the seizure medication, they would then have to call 911 in case her heart stopped and they had to resuscitate her. She was so used to this that when she heard sirens she'd assume they were for her and she'd go to the window to see if the paramedics were at the door. The first time I saw this I had to go to my room because I didn't want her to see me cry. If the children with this disease can make it the ages of seven to eleven, they're thought to have a chance. The fire department at her town knew her and loved her so much that they ran in a phalanx formation around her at the Epilepsy 5K every year while her mom ran with her in the stroller.
Another problem with Dravet Syndrome is that it's so rare, none of the medications are approved by the FDA. It's not lucrative enough to merit funding. What this means then, is that no insurance company will cover the costs for the medication. This is why the disease is so dangerous. Not many families can afford to pay face value costs for medications from Europe or Canada. I know for a fact that mine wouldn't have been able to. This is why so many of the children with Dravet die early. Either they're given too much medication and their bodies succumb or their families can't afford to keep paying their medical costs and have to let the children fight the seizures as best they can on their own. As more of these stories are coming out, there are organizations being formed to help patients find resources but it's not enough. With my girl, she was very fortunate. Her parents are wealthy enough to be able to cover the costs of her medications and ambulance trips. If they hadn't been, her story would have been very different.
Eventually, after my mom had been working with her for about a year, she felt she was stable enough to come to our house, and that's when I started working with her. My girl has the brightest smile, she lives every day with so much joy. She loves to be outdoors, to dance, to play. Despite everything she's never bitter. There were times she was sad, of course there were times. But she has too much love to dwell on it, and it's something we can all learn from.
She knew when her seizures were coming, and there was one time she kept saying, "I don't want it, I don't want it." And she started crying. My mom had trained my sister and I on what to do if she had a seizure so that we could have one person help her and one call 911 and wait for the paramedics. That day I held her in my arms while mom talked to the operator. Her seizure started and we gave her the medicine and I held her the whole time. I kept telling her, "I'm here sweetheart. Kim's here and Connie's here. You're not alone. We're here with you and we love you with our whole hearts." The paramedics came and tried telling mom she couldn't come in the ambulance. I remember laughing at her reaction, "Oh yes I am and you are not stopping me." My sweet girl snapped out of the seizure on the ride to the hospital, and her mom and I were there waiting. One of the firemen had given her a helmet that she was wearing. She said, "Sorry, kids." when she saw the stricken looks on our faces and when I hugged her she said, "Thanks, Kim". Of course, I started crying. I'll remember that day til I die. This one small girl facing the terror of her own Hell with more courage and love than I'd ever seen before.
She had a seizure every eight days if she was lucky, if not they were more frequent. Every big seizure scrambled her speaking and reading skills. I don't know how many times mom taught and retaught her how to read and speak. She'd get so frustrated because she knew the information was there if she could just find it. My mom found out that her signing skills were untouched by the seizures and that became my girl's outlet, she even taught me some signs. That and dance. She decided watching me dance and dancing with me was the most special thing. Her favorite thing to do was spin. Well, that and steal my pointe shoes and teddy bears to take home.
I want you to take a moment. If you couldn't trust your brain to retain information as vital as expression and communication, what would you do? If you fought your body for your life every week, if we lived with that kind of courage what could we do? Please think about others. These children, these teens, these patients without age or gender are fighting so hard just for the right to their own bodies, to their own lives. Stop thinking for a minute about ambitions, vacations, parties, texts, sex and money. Just for a minute. Consider them. Consider their battles.
Do you get where I'm coming from? These patients need a voice. They need to know that they're not alone, and I don't have the slightest idea where to start addressing the problem. Regardless, it needs to be addressed. And I'm not going to stop until I know I've changed the process, made it better for people. I need help. I want to give these people someone who gives a damn, who's listening and taking them seriously. I'll do what it takes, I don't care. Do I need to go from med school to med school sharing these stories and staring the students down til they're intimidated sufficiently? Probably wouldn't be the best plan. Do I need to write to every Senator, every Representative we've elected and the President? Go and talk to them about it? Seriously. I'll go. I was a delegate. I'm not intimidated easily, it's one of my biggest faults. This issue is so big and I don't know where to start, but I'm taking it on the second I'm out of rehab, and I'm starting to plan and network for it now. Please give me ideas, I'll take any.
I have a friend who was diagnosed in their teens with Bipolar disease. For literally a decade they fought both the medications and all the social and psychological ramifications of having this disease. The medications are severe, I'm not going to sugar coat it. They can also add complications to other disorders or medications (like many heavy meds). My friend is now finding out that it might have been a misdiagnosis the whole time. It turns out that Hashimoto's Hypothyroid (sound familiar?) runs in their family, as well as other auto immune diseases on both sides of their family. Lythium, one of the medications, can affect Thyroid levels as well as other things. This person's TSH (a Thyroid blood lab) has been increasing over the years on the medication and THEY, not the doctors, the patient was the one to catch it. What do you even say in a situation like that. "Whoops"? A decade. An effing decade of misdiagnosis. So. Stupid. They don't deserve this. No one deserves this. The individual is now doing their own research to find the medical care they need to get their symptoms under control. This is one of my biggest pet peeves. When you're a teen not only do you have no legal rights but you don't have the independence to undertake this journey alone. You're completely at the mercy of the doctors and your families, and I pray to God that those individuals will do their jobs to protect you. It doesn't always happen, with or without the best of intentions and it's the teens and children who suffer from it. When we're in our mid to late twenties we've had enough experience and we have the capabilities to take things under our own control, legally, financially, medically. No one can hold us against our will and no one can prescribe medical treatment we don't want. Patient advocacy is a growing field that is so vital. Someone needs to speak up for the patients and for their families so that they don't get lost in a system that more often than not sees them as a bar-code instead of as a person.
I was gutted when I found out about this. In one way it would have been easier if I'd been the only one who'd had an experience of this kind. Years of misdiagnosis and disbelief. Every time I hear about a similar story it breaks my heart. I know how much you question your own conviction over the years, how much it shakes your core to be told over and over the symptoms are nothing. You need a counselor. It's growing pains. You're just an anxious woman. It's happening over and over again, to women of any age, to children and teens. What do they teach in med school, that it's ok to disbelieve someone because you, oh holy doctor, are so much higher above them? I guarantee if we were to look, you would bleed the same blood. Your chemical makeup is the same. You cry the same tears. The excuses are wearing thin.
Another story I have to share, is about a very young woman that my mom worked with. She has a very rare seizure disorder. When I met her she was three. She'd had over a hundred "stat" seizures. What I mean by that is that her family had to call 911 because of the severity of her seizures. She had hundreds of "blink-out" seizures, I'm sorry I really don't have a clinical name for them. Basically what happened was she'd literally blink, almost fall and catch herself and that would be the extent of her seizure. Another problem was her body wouldn't snap out of the seizures like typical patients do. There was one time she had an eight hour seizure. I hadn't met her yet but I remember how upset mom was. Mom and the patient's family thought they were going to lose her. Mom had to tell the doctors she was still seizing. The right side of her body was normal but the entire left side was locked. The problem was they'd already tried so many medications to try to stop the seizures that it became a balancing act. She had what I think of as seizure storms in her brain, imagine a thunder storm in a cloud. Because of this, the surgical procedure of removing a portion of the brain to stop the seizures wasn't an option; they were never localized.
Eventually she was diagnosed with Dravet Syndrome in New York.There's a serious danger with these children. They have full blown seizures, but their little bodies aren't meant to handle the amount of medication needed to stop the seizures. The hazard is either their hearts will stop or their brains will succumb to the trauma. Every time her caretakers had to give her the seizure medication, they would then have to call 911 in case her heart stopped and they had to resuscitate her. She was so used to this that when she heard sirens she'd assume they were for her and she'd go to the window to see if the paramedics were at the door. The first time I saw this I had to go to my room because I didn't want her to see me cry. If the children with this disease can make it the ages of seven to eleven, they're thought to have a chance. The fire department at her town knew her and loved her so much that they ran in a phalanx formation around her at the Epilepsy 5K every year while her mom ran with her in the stroller.
Another problem with Dravet Syndrome is that it's so rare, none of the medications are approved by the FDA. It's not lucrative enough to merit funding. What this means then, is that no insurance company will cover the costs for the medication. This is why the disease is so dangerous. Not many families can afford to pay face value costs for medications from Europe or Canada. I know for a fact that mine wouldn't have been able to. This is why so many of the children with Dravet die early. Either they're given too much medication and their bodies succumb or their families can't afford to keep paying their medical costs and have to let the children fight the seizures as best they can on their own. As more of these stories are coming out, there are organizations being formed to help patients find resources but it's not enough. With my girl, she was very fortunate. Her parents are wealthy enough to be able to cover the costs of her medications and ambulance trips. If they hadn't been, her story would have been very different.
Eventually, after my mom had been working with her for about a year, she felt she was stable enough to come to our house, and that's when I started working with her. My girl has the brightest smile, she lives every day with so much joy. She loves to be outdoors, to dance, to play. Despite everything she's never bitter. There were times she was sad, of course there were times. But she has too much love to dwell on it, and it's something we can all learn from.
She knew when her seizures were coming, and there was one time she kept saying, "I don't want it, I don't want it." And she started crying. My mom had trained my sister and I on what to do if she had a seizure so that we could have one person help her and one call 911 and wait for the paramedics. That day I held her in my arms while mom talked to the operator. Her seizure started and we gave her the medicine and I held her the whole time. I kept telling her, "I'm here sweetheart. Kim's here and Connie's here. You're not alone. We're here with you and we love you with our whole hearts." The paramedics came and tried telling mom she couldn't come in the ambulance. I remember laughing at her reaction, "Oh yes I am and you are not stopping me." My sweet girl snapped out of the seizure on the ride to the hospital, and her mom and I were there waiting. One of the firemen had given her a helmet that she was wearing. She said, "Sorry, kids." when she saw the stricken looks on our faces and when I hugged her she said, "Thanks, Kim". Of course, I started crying. I'll remember that day til I die. This one small girl facing the terror of her own Hell with more courage and love than I'd ever seen before.
She had a seizure every eight days if she was lucky, if not they were more frequent. Every big seizure scrambled her speaking and reading skills. I don't know how many times mom taught and retaught her how to read and speak. She'd get so frustrated because she knew the information was there if she could just find it. My mom found out that her signing skills were untouched by the seizures and that became my girl's outlet, she even taught me some signs. That and dance. She decided watching me dance and dancing with me was the most special thing. Her favorite thing to do was spin. Well, that and steal my pointe shoes and teddy bears to take home.
I want you to take a moment. If you couldn't trust your brain to retain information as vital as expression and communication, what would you do? If you fought your body for your life every week, if we lived with that kind of courage what could we do? Please think about others. These children, these teens, these patients without age or gender are fighting so hard just for the right to their own bodies, to their own lives. Stop thinking for a minute about ambitions, vacations, parties, texts, sex and money. Just for a minute. Consider them. Consider their battles.
Do you get where I'm coming from? These patients need a voice. They need to know that they're not alone, and I don't have the slightest idea where to start addressing the problem. Regardless, it needs to be addressed. And I'm not going to stop until I know I've changed the process, made it better for people. I need help. I want to give these people someone who gives a damn, who's listening and taking them seriously. I'll do what it takes, I don't care. Do I need to go from med school to med school sharing these stories and staring the students down til they're intimidated sufficiently? Probably wouldn't be the best plan. Do I need to write to every Senator, every Representative we've elected and the President? Go and talk to them about it? Seriously. I'll go. I was a delegate. I'm not intimidated easily, it's one of my biggest faults. This issue is so big and I don't know where to start, but I'm taking it on the second I'm out of rehab, and I'm starting to plan and network for it now. Please give me ideas, I'll take any.
Revamping
As of this week we're revamping my cardiac rehab regimen and adding exercises in physical therapy. We're finally getting to the point where I'm comfortable. Not to the point where I can push as much as I used to, but we're getting close!
The new goal in cardiac rehab is to get me doing as much on the treadmill as I can without symptoms, and the second I start getting tired or dizzy to go back to the upright bike. I got up to fifteen minutes in the last session, which pretty much means every time I've tried the treadmill I've lasted five minutes longer than the last time (walking). That's pretty good, compared to where I was when I started. And I'm sweating again!!! I know that's a strange and slightly creepy thing for me to be shouting about. Sorry. I have no boundaries, seriously. The reason I'm excited about it is it means my autonomic nervous system is finally getting back to doing what it's supposed to do. (Regulate heartbeat, produce sweat to regulate internal and external temperatures, keep me generally alive-sembling....kidding. Kind of.) Which means the nerve is getting retrained, which means Mr. Levine who came up with this protocol deserves a very big thank you. And a medal. Where do you go to get medals made? I feel like I should know this kind of thing. Something to look into.
The feisty is coming back too. Feels good.
In physical therapy we're focusing on my shoulders for now, since they're the joints that are slipping the most. I'm at the lowest intensity level (but up to two whole pounds in weights! Yeah man!) and my muscles are sore for a normal, healthy reason for the first time in, oh, years. I missed it! I missed the burn of a good workout, where your legs are shaky from running, not from your autonomic nervous system or some other nervous system eating you. That's how I imagine it at least. When I'm bored my over active imagination comes into play and I picture what my body's doing to me. And then I get mad, which is when I stop and find something distracting to do. It'll be a really good thing when I go back to school, or work at least so I have something to do besides rehab and pt. Bored and overactive imagination create some interesting scenarios. Maybe I'll start writing scripts like my mom suggests. It'd give me something to do besides writing my senators and sharing my health story in no uncertain terms. Hee.
I've heard it said that true best friends can go months without seeing each other and pick up like nothing happened. I'm lucky enough to have friends like these, and I value you more than I could ever say. I know if I email you, no matter where you are or what you're doing you'll get back to me and you know it's the same with me. You'll have a sassy, encouraging, sarcastic thing to say about whatever's going on. Missing you feels like a piece of me is gone, but picturing you kicking ass and owning the scene makes me smile.
"St. Jude, pray for us."
I'm not a Catholic, but he's the patron saint of hopeless causes and more often than not, they're the ones worth fighting for.
The new goal in cardiac rehab is to get me doing as much on the treadmill as I can without symptoms, and the second I start getting tired or dizzy to go back to the upright bike. I got up to fifteen minutes in the last session, which pretty much means every time I've tried the treadmill I've lasted five minutes longer than the last time (walking). That's pretty good, compared to where I was when I started. And I'm sweating again!!! I know that's a strange and slightly creepy thing for me to be shouting about. Sorry. I have no boundaries, seriously. The reason I'm excited about it is it means my autonomic nervous system is finally getting back to doing what it's supposed to do. (Regulate heartbeat, produce sweat to regulate internal and external temperatures, keep me generally alive-sembling....kidding. Kind of.) Which means the nerve is getting retrained, which means Mr. Levine who came up with this protocol deserves a very big thank you. And a medal. Where do you go to get medals made? I feel like I should know this kind of thing. Something to look into.
The feisty is coming back too. Feels good.
In physical therapy we're focusing on my shoulders for now, since they're the joints that are slipping the most. I'm at the lowest intensity level (but up to two whole pounds in weights! Yeah man!) and my muscles are sore for a normal, healthy reason for the first time in, oh, years. I missed it! I missed the burn of a good workout, where your legs are shaky from running, not from your autonomic nervous system or some other nervous system eating you. That's how I imagine it at least. When I'm bored my over active imagination comes into play and I picture what my body's doing to me. And then I get mad, which is when I stop and find something distracting to do. It'll be a really good thing when I go back to school, or work at least so I have something to do besides rehab and pt. Bored and overactive imagination create some interesting scenarios. Maybe I'll start writing scripts like my mom suggests. It'd give me something to do besides writing my senators and sharing my health story in no uncertain terms. Hee.
I've heard it said that true best friends can go months without seeing each other and pick up like nothing happened. I'm lucky enough to have friends like these, and I value you more than I could ever say. I know if I email you, no matter where you are or what you're doing you'll get back to me and you know it's the same with me. You'll have a sassy, encouraging, sarcastic thing to say about whatever's going on. Missing you feels like a piece of me is gone, but picturing you kicking ass and owning the scene makes me smile.
"St. Jude, pray for us."
I'm not a Catholic, but he's the patron saint of hopeless causes and more often than not, they're the ones worth fighting for.
Thursday, January 2, 2014
New Beginnings
It may seem kind of convenient that I'm reaching this new phase in treatment just in time for the new year, and I'll try not to get ahead of myself (or beat up on myself) and see it for what it is: just the next phase.
Since I'm starting to get more views with every post and from other countries, I'll start this post with a small recap of everything. I'm a twenty four year old woman living in Colorado. I was diagnosed with Celiac on my thirteenth birthday after about a year of stomach issues (and all of the early signs, now that we know them all haha. I was a preemie baby, my mom had to dress me in doll clothes when I was born, baby clothes fell off. Also, I have super sensitive skin and my eyelashes fall out sometimes.) I got false diagnoses of a bunch of different auto immune diseases growing up, my joints were always hypermobile to a kind of nasty degree but doctors called it growing pains and said that of course I was flexible, I was a dancer. Since they didn't know what to do with me I kind of ignored it (great advice, not.) My PCP found Hashimoto's Hypothyroid disease when I was eighteen, so I went years thinking those two were my only illnesses.
I danced for eighteen years (imagine how fun it is to do the Nutcracker with no eyelashes. Yay, falsies!) before that career ended with a spine injury. Turns out my hypermobile joints were actually caused by a genetic illness that I'll talk about more later. I had an ankle surgery at eighteen because my right ankle overextended and a ligament got stuck in the joint when it came back in. My spine injury was a lot more complicated, I had two bulging disks at the base of my spine (L4-L5 and L5-S1), possibly due to the same issue or overuse from dance. I had an injury in dance class where the disks herniated, my right lat muscle tore and my L4 vertebra broke. It was nasty. I kept having issues after endoscopic injections and when they did a CT scan they found my L5-S1 disk was cutting into my spinal cord and I needed surgery a week later, on my brother's birthday. It's always birthdays or holidays with me, I swear.
It took me a while to figure out what to do with my life without dance in the picture. I changed majors probably about five times a semester before I moved back to Colorado for a change in scenery, and to get back to school and figure everything out. That plan got derailed when I started getting really sick out of nowhere. It started with sharp stomach pain and I couldn't keep anything down and months later (on New Year's last year) I found out it was Gastroparesis. Right when we found that out I started having new symptoms, I had tremors in both arms and both legs and random times, I started having balance issues (this was important because of the career in dance. Before then, I'd never in my life passed out or had balance issues. Ever.) blacking out all the time, and my muscle strength went from really high to nothing. I was absolutely terrified. I don't let go of control easily in regards to my own life. After nine neurologists did a million and one tests to prove themselves right (which failed, by the way. Naturally if they can't find the answer it's because the "girl" is lying for attention. I'll skip the bad language that this makes me want to use.) my mom and I gave up and went to the Cleveland Clinic. We were in Cleveland for a week and every doctor's visit was a test or a diagnosis. They took twelve tubes of blood (I have small veins. It took a while.) and I finally got my answer, twelve years after my bout with diagnoses of lifelong illnesses started.
In total I have Celiac, Hashimoto's, Gastroparesis, Ehlers-Danlos and Postural Orthostatic Tachycardia Syndrome. I've been in Cardiac Rehab for my POTS for about two months now, trying to retrain the nerve connections between my brain and heart to get things back to normal. Until my team at CR was satisfied, meaning I could handle standing and exercising without my heart going past 130 (it likes to go a lot higher) I was banned from physical therapy to keep everything from spiraling downward again. Ehlers-Danlos (at least the type I have) is a genetic disorder that means collagen production is smaller in me, so my joints aren't as protected, so they'll bend at bad angles and potentially dislocate. My doctors think that doing dance and pilates for years saved my little white ass in this aspect, it kept my joints limber and strong, protecting them from injury. It's been three years now since I've taken serious dance classes and my joints have gotten really deconditioned. I was hoping I didn't injure something on accident before I was allowed back into pt to get everything strong again but hey, this is me we're talking about! I was sleeping and my right shoulder subluxed (don't ask me how, I have no idea. No, as my doctor asked, I wasn't wrestling or anything, just sleeping.) and I need about a month of pt to try and prevent surgery. (Let's skip the cutting into me and letting my multiple diseases try to eat me alive. We just calmed them down.)
But that (finally, sorry I'm bad at "short" anything when it comes to writing. It's why I'm going into script writing as my new major haha. I can write for days.) brings me to my news! I'm cleared for pt as long as I do it sitting down on a mat or yoga ball. Hah. Hey, I'll take it! We're going to focus on my shoulders at first and see where we need to take it from there. But I'm really excited:) I think this is another turning point, and I'm very fond of those lovely moments in recovery. It's a step forward.
I might even get to go back to work again soon! Keep your fingers crossed for me? I'm just so happy to start retraining, even if it's at a slower pace. I'm comfortable retraining muscles and joints, still unsure about the whole retraining nerves thing.
I know it's New Year's and I know a lot of people do resolutions, and I'm seriously not trying to say they're bad. I think anything that motivates you to be stronger, kinder, more successful, happier, healthier, whatever is great. Use it. In my life, things change on a dime and I mean that literally. Spine injury, diseases onset, disease diagnoses, it happens in an instant. Maybe more people need life changing events, I just hope they're, you know, happy ones. Not....you know. You can lose or win everything in the blink of an eye, we can't control our destinies. Take the punches as they come and try to be the best, kindest, most sympathetic person you can be when you come out the other end. Don't judge. It never does either side any good. (It also pisses off little Scots women like me. We may be small but we're loud and feisty. You've been warned.) I can't make long term goals because I'm still not at a point where I trust my health to stay a constant to allow me any kind of plans. Of course I plan to finish my degree and be as successful and epic as I can be in my own field, and I want that for all of you, too. But I'm still taking things moment to moment and I feel like I'm walking on thin ice. I'm out of the water but not on solid land yet.
I think everything in my life was leading to this. This was meant to be, even though I don't have a clue why right now. Surprisingly, with people telling me over and over I was faking it and just fine, my self confidence has grown to be so much stronger than it ever was before. It's a little counter-intuitive. I won't play the puppet game and I sure as hell am done looking back. This is a new year. It's going to be better. I've gotten stronger and I'm getting stronger every day. I didn't give up, even though there were months that I wanted to. Real life and the business world is going to be cake compared to fighting for my life for a year a half, more when you add in the rehab and physical therapy time. I won't be letting anything get in my way anymore, including myself. Somehow in accepting my fears and giving them names, I overcame them all. I almost feel bad for the competition, almost.
Since I'm starting to get more views with every post and from other countries, I'll start this post with a small recap of everything. I'm a twenty four year old woman living in Colorado. I was diagnosed with Celiac on my thirteenth birthday after about a year of stomach issues (and all of the early signs, now that we know them all haha. I was a preemie baby, my mom had to dress me in doll clothes when I was born, baby clothes fell off. Also, I have super sensitive skin and my eyelashes fall out sometimes.) I got false diagnoses of a bunch of different auto immune diseases growing up, my joints were always hypermobile to a kind of nasty degree but doctors called it growing pains and said that of course I was flexible, I was a dancer. Since they didn't know what to do with me I kind of ignored it (great advice, not.) My PCP found Hashimoto's Hypothyroid disease when I was eighteen, so I went years thinking those two were my only illnesses.
I danced for eighteen years (imagine how fun it is to do the Nutcracker with no eyelashes. Yay, falsies!) before that career ended with a spine injury. Turns out my hypermobile joints were actually caused by a genetic illness that I'll talk about more later. I had an ankle surgery at eighteen because my right ankle overextended and a ligament got stuck in the joint when it came back in. My spine injury was a lot more complicated, I had two bulging disks at the base of my spine (L4-L5 and L5-S1), possibly due to the same issue or overuse from dance. I had an injury in dance class where the disks herniated, my right lat muscle tore and my L4 vertebra broke. It was nasty. I kept having issues after endoscopic injections and when they did a CT scan they found my L5-S1 disk was cutting into my spinal cord and I needed surgery a week later, on my brother's birthday. It's always birthdays or holidays with me, I swear.
It took me a while to figure out what to do with my life without dance in the picture. I changed majors probably about five times a semester before I moved back to Colorado for a change in scenery, and to get back to school and figure everything out. That plan got derailed when I started getting really sick out of nowhere. It started with sharp stomach pain and I couldn't keep anything down and months later (on New Year's last year) I found out it was Gastroparesis. Right when we found that out I started having new symptoms, I had tremors in both arms and both legs and random times, I started having balance issues (this was important because of the career in dance. Before then, I'd never in my life passed out or had balance issues. Ever.) blacking out all the time, and my muscle strength went from really high to nothing. I was absolutely terrified. I don't let go of control easily in regards to my own life. After nine neurologists did a million and one tests to prove themselves right (which failed, by the way. Naturally if they can't find the answer it's because the "girl" is lying for attention. I'll skip the bad language that this makes me want to use.) my mom and I gave up and went to the Cleveland Clinic. We were in Cleveland for a week and every doctor's visit was a test or a diagnosis. They took twelve tubes of blood (I have small veins. It took a while.) and I finally got my answer, twelve years after my bout with diagnoses of lifelong illnesses started.
In total I have Celiac, Hashimoto's, Gastroparesis, Ehlers-Danlos and Postural Orthostatic Tachycardia Syndrome. I've been in Cardiac Rehab for my POTS for about two months now, trying to retrain the nerve connections between my brain and heart to get things back to normal. Until my team at CR was satisfied, meaning I could handle standing and exercising without my heart going past 130 (it likes to go a lot higher) I was banned from physical therapy to keep everything from spiraling downward again. Ehlers-Danlos (at least the type I have) is a genetic disorder that means collagen production is smaller in me, so my joints aren't as protected, so they'll bend at bad angles and potentially dislocate. My doctors think that doing dance and pilates for years saved my little white ass in this aspect, it kept my joints limber and strong, protecting them from injury. It's been three years now since I've taken serious dance classes and my joints have gotten really deconditioned. I was hoping I didn't injure something on accident before I was allowed back into pt to get everything strong again but hey, this is me we're talking about! I was sleeping and my right shoulder subluxed (don't ask me how, I have no idea. No, as my doctor asked, I wasn't wrestling or anything, just sleeping.) and I need about a month of pt to try and prevent surgery. (Let's skip the cutting into me and letting my multiple diseases try to eat me alive. We just calmed them down.)
But that (finally, sorry I'm bad at "short" anything when it comes to writing. It's why I'm going into script writing as my new major haha. I can write for days.) brings me to my news! I'm cleared for pt as long as I do it sitting down on a mat or yoga ball. Hah. Hey, I'll take it! We're going to focus on my shoulders at first and see where we need to take it from there. But I'm really excited:) I think this is another turning point, and I'm very fond of those lovely moments in recovery. It's a step forward.
I might even get to go back to work again soon! Keep your fingers crossed for me? I'm just so happy to start retraining, even if it's at a slower pace. I'm comfortable retraining muscles and joints, still unsure about the whole retraining nerves thing.
I know it's New Year's and I know a lot of people do resolutions, and I'm seriously not trying to say they're bad. I think anything that motivates you to be stronger, kinder, more successful, happier, healthier, whatever is great. Use it. In my life, things change on a dime and I mean that literally. Spine injury, diseases onset, disease diagnoses, it happens in an instant. Maybe more people need life changing events, I just hope they're, you know, happy ones. Not....you know. You can lose or win everything in the blink of an eye, we can't control our destinies. Take the punches as they come and try to be the best, kindest, most sympathetic person you can be when you come out the other end. Don't judge. It never does either side any good. (It also pisses off little Scots women like me. We may be small but we're loud and feisty. You've been warned.) I can't make long term goals because I'm still not at a point where I trust my health to stay a constant to allow me any kind of plans. Of course I plan to finish my degree and be as successful and epic as I can be in my own field, and I want that for all of you, too. But I'm still taking things moment to moment and I feel like I'm walking on thin ice. I'm out of the water but not on solid land yet.
I think everything in my life was leading to this. This was meant to be, even though I don't have a clue why right now. Surprisingly, with people telling me over and over I was faking it and just fine, my self confidence has grown to be so much stronger than it ever was before. It's a little counter-intuitive. I won't play the puppet game and I sure as hell am done looking back. This is a new year. It's going to be better. I've gotten stronger and I'm getting stronger every day. I didn't give up, even though there were months that I wanted to. Real life and the business world is going to be cake compared to fighting for my life for a year a half, more when you add in the rehab and physical therapy time. I won't be letting anything get in my way anymore, including myself. Somehow in accepting my fears and giving them names, I overcame them all. I almost feel bad for the competition, almost.
Monday, December 30, 2013
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.
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.
Sunday, December 29, 2013
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.
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 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!
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