I just found out that I was diagnosed with Ehlers-Danlos Syndrome, which nixes out Hypermobility and Undifferentiated Connective Tissue. Down to just five chronic illnesses! I'd make a list of all the wrong diagnoses I've had but it's getting ridiculous so we'll just skip that step. It's taken a total of twelve years from start to finish (theoretically. If we're done with this ridiculous exercise on patience that I don't have.) to get the full picture. We're down to Celiac (autoimmune), Hashimoto's Hypothyroid (autoimmune), POTS (autonomic), Gastroparesis (autonomic) and Ehlers-Danlos Syndrome (autonomic ish? It's a genetic disorder that attacks different things in the autonomic nervous system and collagen. But you go to a Rheumatologist typically for general treatment so it's a little confusing. No this isn't caused by attack T cells gone haywire, basically.).
There are different types of EDS so we need to narrow it down. I'm calling my Rheumatologist tomorrow to talk about it all. Basically it can affect skin, blood vessels, joint flexibility and mobility. Very genetic so my brother and sister need to get checked for it too. The skin bit is it can cause the skin to bruise easily, skin to be more thin and almost translucent (haha, sound familiar? Miss whiter than scar tissue here), blood vessels are small and fragile (making it harder for IVs or blood draws as well as finding a pulse) and in some cases put them at risk of rupturing. The joint bit is hypermobility just more specific. Joints can dislocate fully or partially, joints pop all the time (heh) and you can have connective tissue issues. This disease, from what I've read, is in kind the grey area between autoimmune and autonomic. It's pretty rare (naturally). Yes, it's chronic. Yes, it's genetic. Meaning there is no fix or easy solution, just something you integrate into daily life like any other lifelong illness.
As with all of these illnesses, they're not going to go away. I've gotten some questions lately so sorry if I'm repeating myself. There is a VERY strong chance, and seeing as it's me I'd say it's a guarantee that if I had kids they would have one or more of my illnesses or one that runs in my family. I want to be a mom (in the VERY DISTANT future) but there's no way I'm playing this game again and I'm not putting my mom through it again either. I'm planning on adopting. That's a conversation I'll have to have with whatever guy eventually decides to consider a life with me. Or something I might decide do on my own at some point. No, none of these illnesses are contagious or sexually transmitted. The only way anyone would "catch" these from me would be if they were my child. Or grandchild.
I want the full picture of absolutely everything going on and their ramifications for now, five years down the road and the potential hazards I'll have to keep an eye out for in future. I'm not stopping til this shit is completely locked down. Twelve years. This is ending and it's ending now. This summer I turn 25 and there's no way I'm spending another year playing the rounds with different doctors.
If you couldn't tell I'm a little peeved, sorry. I looked up EDS and there was a pamphlet online. It listed wrong diagnostics for EDS and two of them were, "Growing pains" and "It's all in your head". And this is socially acceptable?? In med school do they literally tell students that it's ok to feed this kind of crap to a sick patient? I've gotten both of those as well as a looong list of auto immune diseases that I've decided are just what they tell people when they frankly have no clue what's going on. I get that EDS is rare. Got it. Check. But since it's a disease that's internationally recognized as real, not to mention serious, maybe if a patient has every single symptom in the book you could consider running the very simple blood test for it instead of lying to cover the fact that you don't care enough about your profession to put in any real effort.
I feel like if I see a new doctor I need to make a print out of everything I have going on, sit them down like a child and watch them read it before they're allowed to touch me. Or poke. Or tase. I know that in some districts they make cops have a taser used on them before they're allowed to carry one. Can they do that with doctors? I know nurses try to follow that idea to an extent, in terms of trying barium, charcoal and other "drinks" some patients have to take for different reasons. It's just a suggestion.
Wednesday, November 20, 2013
Friday, November 15, 2013
Small Victories
Today was my first small victory, and as small as it is I still smile about it. Up til now every time I went to my cardiac rehab I'd have to sit down and rest after setting up my heart monitor because my heart rate would be around 140. Today I got to start right away and it took some work to get my heart to my target rate. That's a huge difference for me.
Realistically, yes I still have a long way to go before I'm back to normal. Yes, by the end of my workout my heart was a little mad. Yes, it wore me out and I had to rest.
But after my workout, I stretched standing, which I literally haven't been able to do for years. It was one of those moments when I felt the smallest bit like my old self again. My hands went straight to ballet mode and it made me smile. I used to get so many notes in every other dance class to stop using "ballet hands". My flexibility is nowhere near where it used to be, but I still have both splits and I can stretch without blacking out. To make it better, in a couple weeks I can start resistance stretching and small weights a little after that. I guess the biggest victory in this is that I don't see myself in medical limbo anymore. Today was the first day I saw improvement, the first day I felt like the person I used to be. Maybe with some work I can make it back to being that person, I hope so at least. After being sick for so long it's going to be strange coming back to "normal" life. And hard. Relating to people that say things like, "I left my coffee on the roof of my car. God hates me. I can't take it." (and yes, that's a direct quote) is almost laughable. I want to reply that God has so many more issues to deal with that the placement of your morning coffee and the minor detail of you spacing it out.
I think it's a blessing we don't know the future. Things that I thought were the end of the world years ago just make me laugh now. I feel like the small catastrophes in our youth are there to strengthen us for the real challenges in our futures. I thought getting diagnosed with Celiac when I was thirteen and living in a small town in Wyoming was such a big deal, dealing with the idea of forever right when I entered the teen years. Eleven years ago if you said you had "Celiac" or that you needed "gluten free" people stared at you like you were speaking Greek. My family visited my Gram in New England and I remember asking a waitress at a restaurant if the clam chowder had flour in it and the waitress responded, "No, but it does have wheat, is that ok?". Really. Now, Celiac is insanely easy to manage, thanks very much to the Atkin's diet introducing the idea of burgers and sandwiches without the bun. Also, thanks to fad diet people taking the term "diet" a little too literally. I won't judge.
Something that one of my best friends said to me was that one of the good things coming from all of this is that it brought me back to what's important to me. After my spine surgery I walked away from professional dance. My surgeon was adamant in making sure I understood how serious the injury was and that professional dance was not an option with my back. Pretty sure when someone shows me an image of a vertebral disk cutting into my spinal cord I understand the severity of the situation, but I appreciate the gesture. The whole thing could have ended so differently, and I will never forget the people that fought to make sure I didn't end up in a wheelchair. The surgery was done microscopically, so even five to ten years ago the surgery wouldn't have been a possibility. My scar is only a little over an inch long (right next to a freckle that my doctor teased was his "landmark"). It's so small that I joked with him, asking for a bigger scar. His answer was no, surprisingly enough, he didn't think a bigger scar would make my story better. I still think it would have. When I came back to school people saw the scar and said, "Oh, I thought it was a serious surgery...". My surgeon used internal stitches and surgical glue to seal the incision so the dressing that I had to change out was neosporin and a bandaid. Literally. So incredibly anti-climatic. I actually had one friend say, "Oh sweetie, I understand how hard all of this is for you. I had mono." Somehow with the surgery being performed microscopically it was downgraded to mono? I'm not sure I'll ever understand the thought process behind that.
Looking back now, I think walking away from all of the arts was a mistake. Yes, I love the law and I always will, but even three years later the one thing that excites and intrigues me is the arts. I still have music, I can write, I love playing with choreography and production and I think there's a lot of ground I could cover in the arts. I also think they're necessary. Not in terms of life or death, but in terms of release and expression. Being involved in something that is centered around bringing people joy and a break from whatever life is throwing at them is the most rewarding thing for me. Dance was always my coping mechanism, and I know that music and the arts do the same for others. We use music and movement and pictures to say the things our hearts need to express. It goes beyond words. To me, dance is the language of the heart. Before we spoke, we danced. Even if I can't be a professional ballerina like I used to dream, I can bring the arts to people. I hate the systems that medicine and law have turned into, but I can love them from a distance. I absolutely believe that everything happens for a reason. With all of this, literally everything that had an influence on me, money, a fit body, a career, my health and a lot of relationships were stripped away. I think I needed this to learn how to fight for myself, instead of letting everyone and everything influence my life. I listened to other people, peers, teachers, doctors. I followed their advice, even when it was toxic. I did what they said I should do without question and it was me that got screwed by it.
I don't know exactly what I'll do career-wise, I'm interested in almost every aspect of the creative process. It'll be interesting to see where life take me from here, and for the first time in a long while, I'm finally starting to believe it will happen. That's a victory worth celebrating.
Realistically, yes I still have a long way to go before I'm back to normal. Yes, by the end of my workout my heart was a little mad. Yes, it wore me out and I had to rest.
But after my workout, I stretched standing, which I literally haven't been able to do for years. It was one of those moments when I felt the smallest bit like my old self again. My hands went straight to ballet mode and it made me smile. I used to get so many notes in every other dance class to stop using "ballet hands". My flexibility is nowhere near where it used to be, but I still have both splits and I can stretch without blacking out. To make it better, in a couple weeks I can start resistance stretching and small weights a little after that. I guess the biggest victory in this is that I don't see myself in medical limbo anymore. Today was the first day I saw improvement, the first day I felt like the person I used to be. Maybe with some work I can make it back to being that person, I hope so at least. After being sick for so long it's going to be strange coming back to "normal" life. And hard. Relating to people that say things like, "I left my coffee on the roof of my car. God hates me. I can't take it." (and yes, that's a direct quote) is almost laughable. I want to reply that God has so many more issues to deal with that the placement of your morning coffee and the minor detail of you spacing it out.
I think it's a blessing we don't know the future. Things that I thought were the end of the world years ago just make me laugh now. I feel like the small catastrophes in our youth are there to strengthen us for the real challenges in our futures. I thought getting diagnosed with Celiac when I was thirteen and living in a small town in Wyoming was such a big deal, dealing with the idea of forever right when I entered the teen years. Eleven years ago if you said you had "Celiac" or that you needed "gluten free" people stared at you like you were speaking Greek. My family visited my Gram in New England and I remember asking a waitress at a restaurant if the clam chowder had flour in it and the waitress responded, "No, but it does have wheat, is that ok?". Really. Now, Celiac is insanely easy to manage, thanks very much to the Atkin's diet introducing the idea of burgers and sandwiches without the bun. Also, thanks to fad diet people taking the term "diet" a little too literally. I won't judge.
Something that one of my best friends said to me was that one of the good things coming from all of this is that it brought me back to what's important to me. After my spine surgery I walked away from professional dance. My surgeon was adamant in making sure I understood how serious the injury was and that professional dance was not an option with my back. Pretty sure when someone shows me an image of a vertebral disk cutting into my spinal cord I understand the severity of the situation, but I appreciate the gesture. The whole thing could have ended so differently, and I will never forget the people that fought to make sure I didn't end up in a wheelchair. The surgery was done microscopically, so even five to ten years ago the surgery wouldn't have been a possibility. My scar is only a little over an inch long (right next to a freckle that my doctor teased was his "landmark"). It's so small that I joked with him, asking for a bigger scar. His answer was no, surprisingly enough, he didn't think a bigger scar would make my story better. I still think it would have. When I came back to school people saw the scar and said, "Oh, I thought it was a serious surgery...". My surgeon used internal stitches and surgical glue to seal the incision so the dressing that I had to change out was neosporin and a bandaid. Literally. So incredibly anti-climatic. I actually had one friend say, "Oh sweetie, I understand how hard all of this is for you. I had mono." Somehow with the surgery being performed microscopically it was downgraded to mono? I'm not sure I'll ever understand the thought process behind that.
Looking back now, I think walking away from all of the arts was a mistake. Yes, I love the law and I always will, but even three years later the one thing that excites and intrigues me is the arts. I still have music, I can write, I love playing with choreography and production and I think there's a lot of ground I could cover in the arts. I also think they're necessary. Not in terms of life or death, but in terms of release and expression. Being involved in something that is centered around bringing people joy and a break from whatever life is throwing at them is the most rewarding thing for me. Dance was always my coping mechanism, and I know that music and the arts do the same for others. We use music and movement and pictures to say the things our hearts need to express. It goes beyond words. To me, dance is the language of the heart. Before we spoke, we danced. Even if I can't be a professional ballerina like I used to dream, I can bring the arts to people. I hate the systems that medicine and law have turned into, but I can love them from a distance. I absolutely believe that everything happens for a reason. With all of this, literally everything that had an influence on me, money, a fit body, a career, my health and a lot of relationships were stripped away. I think I needed this to learn how to fight for myself, instead of letting everyone and everything influence my life. I listened to other people, peers, teachers, doctors. I followed their advice, even when it was toxic. I did what they said I should do without question and it was me that got screwed by it.
I don't know exactly what I'll do career-wise, I'm interested in almost every aspect of the creative process. It'll be interesting to see where life take me from here, and for the first time in a long while, I'm finally starting to believe it will happen. That's a victory worth celebrating.
Tuesday, November 5, 2013
Let's Find a Mountain to Climb
I hate being bored or sitting still for too long. Meaning about ten minutes. I like multi tasking, listening to music while studying; doing needlepoint while watching a movie or listening to music; working two jobs while going to school full time; taking on a subject to study just because it sounds like a fun challenge. If I'm not intimidated by a project or find it pushing me hard enough I'll get bored and drop it. It was slightly problematic in high school, especially with subjects I didn't like, but now it's just plain fun. The first thought that goes into my head when I see a big tree or a mountain is "how pretty", followed by "now let's climb it!". To make it more fun, even if there's a clearly marked path, I'll usually be the stubborn idiot that goes for the hardest possible way to get to the top. I mean that both literally and figuratively. If I'm in a slump, I'll go for a drive and look for a mountain to climb to clear my head. It was a lot easier when I lived in Wyoming and it was a fifteen minute drive to get into the wilderness (no exaggeration) and the mountains I climbed with my family when I was younger.
My thought today was that this experience has been one of those times where "Be careful what you wish for" comes into play. I didn't mean it this literally!!!
Oh well. I wanted an all consuming challenge...can't complain now that I've gotten it. Or at least I can't complain too often. Or loudly. Maybe once in a while under my breath.
One of my biggest goals is to beat my body into submission so that I can climb mountains again in the strictly physical (or intellectual. Just NOT medical.) sense. And go to warm places with gorgeous beaches. The outdoors are so important to me. Either my body lets me explore and play and learn about new cultures and religions and languages (and DANCE! Cultural dance is so incredibly fascinating and gorgeous and wonderful.) or I'll go back to the stubborn idiot mode, go anyway and deal with the feeling like crap consequences after.
When my mom was my age, she went to Fiji and the Solomon Islands. It's always been a kind of fantasy of mine that I'd have a destination wedding in Fiji. At the very least I'd like to go there with my family.
One of the problems of stubborn me is that I don't want to go to a country without knowing the language first. I really don't want to be the stereotypical American tourist who expects everything to be in English and American sized. I want to honor the country's history, their religion and their unique culture. I don't want to do tourist-y things, I'm interested in the reality of the location. Realistically, I know that there's no way I can learn every language I want to, but I can sure as h*ll try!
One step at a time.
Patience.
Ha.
Mountains!
My thought today was that this experience has been one of those times where "Be careful what you wish for" comes into play. I didn't mean it this literally!!!
Oh well. I wanted an all consuming challenge...can't complain now that I've gotten it. Or at least I can't complain too often. Or loudly. Maybe once in a while under my breath.
One of my biggest goals is to beat my body into submission so that I can climb mountains again in the strictly physical (or intellectual. Just NOT medical.) sense. And go to warm places with gorgeous beaches. The outdoors are so important to me. Either my body lets me explore and play and learn about new cultures and religions and languages (and DANCE! Cultural dance is so incredibly fascinating and gorgeous and wonderful.) or I'll go back to the stubborn idiot mode, go anyway and deal with the feeling like crap consequences after.
When my mom was my age, she went to Fiji and the Solomon Islands. It's always been a kind of fantasy of mine that I'd have a destination wedding in Fiji. At the very least I'd like to go there with my family.
One of the problems of stubborn me is that I don't want to go to a country without knowing the language first. I really don't want to be the stereotypical American tourist who expects everything to be in English and American sized. I want to honor the country's history, their religion and their unique culture. I don't want to do tourist-y things, I'm interested in the reality of the location. Realistically, I know that there's no way I can learn every language I want to, but I can sure as h*ll try!
One step at a time.
Patience.
Ha.
Mountains!
Sunday, November 3, 2013
Heart Health
Going into all of this I knew I was in for hard work, but I don't think I was fully prepared for what that work would be. When I think of hard work, all my experiences tell me it's going to be physically challenging. Like my ankle and spine surgeries. A little pain, some bruising, some physical therapy and I'd bounce back quickly. Growing up as a dancer, a runner, a hiker and a lover of anything outdoors, I'm in my comfort zone when I'm pushing myself physically. I know the steps, I know the rules and I just go for it.
This is so incredibly different.
And I didn't think about it. Physically, my heart's ok. Structurally, there are no issues that were found. So this isn't physically getting my body into better shape, I'm not even at the vascular level yet. We're re-training my nerves which is so much harder. And requires so much patience. Which I'm so sick of hearing about. I know it comes from love but I'm not a patient person and I really am putting in all my efforts into getting better. One of my cardiac nurses joked with me that I looked "determined" in therapy on Friday. Pretty sure that's just how I look in general when I'm focusing on getting something right physically, I got a ton of notes for that with dance.
I don't understand how the nerves are getting re-trained, but we've been following the protocol from the Cleveland Clinic to the letter. My first day in therapy, the Friday before last, just at standing my heart was higher than my parameters allowed so I had to sit before working on the recumbent bike. I had to go so slowly that the bike system kicked me out three times, but if I went any faster or talked my heart rate would jump up. Insane. My first week, I was allowed three therapy sessions that included twenty minutes of biking, followed by a five minute cool down while hooked up to a heart monitor. This is such a step down from what I'm used to that I wasn't expecting a challenge at all. Physically, there wasn't one. Even in my VERY deconditioned state it was fine physically. But my heart was tired. Walking back to the car I had to take a break and lean against a wall and then fell asleep the second I got home. I hope it gets easier with time, I think it will. I keep trying to remind myself that this was my first week doing therapy and I shouldn't expect results right away.
Patience, right?
Here's the thing. When I had ankle surgery back in high school, my ankle felt better in the hospital when I woke up than before surgery, even though it had just been cut into. And I got the typical, "What did you do??" reaction from my surgeon. But my ankle strength and mobility came back right away and I danced again shortly after. With my spine surgery, I stopped taking pain pills two days after the surgery and did really well in physical therapy, again bouncing back quickly. I think I get it from my family; we heal quickly and have high pain tolerances. I'm used to bouncing back right away. I'm used to being strong and nimble and tiny and taking multi tasking to insane levels. This is such a huge lesson in humility and taking things in stride. I also get the feeling that once I'm let off the leash it'll be something like letting loose a cannon. And I will have SO MUCH FUN when that happens!
First comes re-training the nerves though, which actually seems to be working. My heart's already doing better in therapy, even though I'm completely wiped out after. Then will come vascular training, getting my blood and heart working the way they need to and THEN comes the physical segment. The physical segment being the only one I'm confident about not looking like a total moron doing.
Another snag, besides the exhaustion, is that my chest's been feeling really tight and I'm short of breath, kind of gaspy. Which is weird. I'm reading up on POTS websites and people's blogs to see if this is normal and I emailed my doctors about it. We'll see what they have to say.
All of this heart mess reminds me of my Grandpa. I didn't get to know him as well as I would have liked, he passed away when I was six. But I know he had congenital heart failure. He also had Celiac. I wonder if he felt these symptoms, too? My Dysautonomia book says that the quality of life for POTS patients is similar to that of patients with congenital heart failure. I feel like he's been watching over me this whole time. I like to think so at least. There've been times when it seemed like someone up there was smiling at me, and I just picture Grandpa's face when it happens.
This is so incredibly different.
And I didn't think about it. Physically, my heart's ok. Structurally, there are no issues that were found. So this isn't physically getting my body into better shape, I'm not even at the vascular level yet. We're re-training my nerves which is so much harder. And requires so much patience. Which I'm so sick of hearing about. I know it comes from love but I'm not a patient person and I really am putting in all my efforts into getting better. One of my cardiac nurses joked with me that I looked "determined" in therapy on Friday. Pretty sure that's just how I look in general when I'm focusing on getting something right physically, I got a ton of notes for that with dance.
I don't understand how the nerves are getting re-trained, but we've been following the protocol from the Cleveland Clinic to the letter. My first day in therapy, the Friday before last, just at standing my heart was higher than my parameters allowed so I had to sit before working on the recumbent bike. I had to go so slowly that the bike system kicked me out three times, but if I went any faster or talked my heart rate would jump up. Insane. My first week, I was allowed three therapy sessions that included twenty minutes of biking, followed by a five minute cool down while hooked up to a heart monitor. This is such a step down from what I'm used to that I wasn't expecting a challenge at all. Physically, there wasn't one. Even in my VERY deconditioned state it was fine physically. But my heart was tired. Walking back to the car I had to take a break and lean against a wall and then fell asleep the second I got home. I hope it gets easier with time, I think it will. I keep trying to remind myself that this was my first week doing therapy and I shouldn't expect results right away.
Patience, right?
Here's the thing. When I had ankle surgery back in high school, my ankle felt better in the hospital when I woke up than before surgery, even though it had just been cut into. And I got the typical, "What did you do??" reaction from my surgeon. But my ankle strength and mobility came back right away and I danced again shortly after. With my spine surgery, I stopped taking pain pills two days after the surgery and did really well in physical therapy, again bouncing back quickly. I think I get it from my family; we heal quickly and have high pain tolerances. I'm used to bouncing back right away. I'm used to being strong and nimble and tiny and taking multi tasking to insane levels. This is such a huge lesson in humility and taking things in stride. I also get the feeling that once I'm let off the leash it'll be something like letting loose a cannon. And I will have SO MUCH FUN when that happens!
First comes re-training the nerves though, which actually seems to be working. My heart's already doing better in therapy, even though I'm completely wiped out after. Then will come vascular training, getting my blood and heart working the way they need to and THEN comes the physical segment. The physical segment being the only one I'm confident about not looking like a total moron doing.
Another snag, besides the exhaustion, is that my chest's been feeling really tight and I'm short of breath, kind of gaspy. Which is weird. I'm reading up on POTS websites and people's blogs to see if this is normal and I emailed my doctors about it. We'll see what they have to say.
All of this heart mess reminds me of my Grandpa. I didn't get to know him as well as I would have liked, he passed away when I was six. But I know he had congenital heart failure. He also had Celiac. I wonder if he felt these symptoms, too? My Dysautonomia book says that the quality of life for POTS patients is similar to that of patients with congenital heart failure. I feel like he's been watching over me this whole time. I like to think so at least. There've been times when it seemed like someone up there was smiling at me, and I just picture Grandpa's face when it happens.
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