So here it is; the work in progress that is my blog. I struggled with the idea of having my own blog; realistically, this is just a one-way conversation to myself. Do I need that? Aren't I already having those in my head more often then I should admit to the world? On the other hand, the internet has way more conversation-follow-up information than my brain does, so why not? PLUS, someone looking for information or even just a person to relate to may stumble upon my words...or so my thought process goes...
In the end, I clearly decided to go ahead and start a blog, if only for the intention of having the opportunity to say things that I don't feel comfortable, or feel able to let go of in front of actual people. I'm naturally a pretty positive, look-on-the-bright-side kind of person. Not annoyingly (if I do say so myself- and hey this is a one-sided conversation to me so I can!), mind you, but when I talk about things that suck- it's usually in a way that end up making the listener laugh. I've always been that way, I hopefully always will be. Over the course of my life- a lot has sucked, and as strange as it sounds, I feel like I have to make other people feel better when they talk to me about it. Wow....that's f-ed up! This blog could totally end up saving me a ton in therapy! Or, it could possibly make me crazy enough to stop speaking to real, live people all together only to save my true thoughts for this one-sided conversation to myself. Eh...time will tell..
Anyway, back to my point: I have Ehlers Danlos Syndrome (EDS). There is a brief description of what those words mean to the right of the screen, but the truth is EDS effects people differently; so anytime I talk about it, I'm only representing what I personally experience with this syndrome. For me, EDS effects my major joints; my hips (the right more so then the left) slip in and out of their socket countless times during the day, same with my shoulders & knees. My ankles & wrists slide around when moving them as does the parts of my spine that connect with my hips, and way up where it connects with my head (ever feel your head slide around on top of your spine? It's weird even for weird). I pop & click throughout my days and pray that nobody thinks I just had some kind of weird gastric experience. I get injured really easily (subluxations, dislocations, slips, and for some reason broken fingers & toes are my norm), bruise & scar easily. I have Mitral Valve Prolapse (MVP) as well as POTS which makes me pass out, overheat, have crazy heart pounding craziness etc. pretty easily. I suspect I have dysautonomia as many EDSers do, but I've not been officially diagnosed with that. EDS also greatly effects my entire GI system. Over the past 3 years, I have developed a complete intolerance for gluten, dairy, mammal & it's byproducts and most fats- which is really frustrating for someone who LOVES to cook (and is really good at it- see, I didn't even apologize for gloating that time since I know I'm just talking to me :) ) & eat what I cook. I miss food terribly, but the aftermath of eating those now forbidden treats just isn't worth the days & sometimes weeks of horrible pain and not so appetizing events that follow.
I was diagnosed by a geneticist 4 years ago by a pretty prominent Geneticist for our area; she's been featured on those Mystery Diagnosis shows and I feel pretty lucky to have been seen by her, especially since she specializes in Pediatrics. I've not yet been typed (there are 7 different types of EDS the last I checked, though that number seems to fluctuate between 7 & 9 depending on who you ask), and I seem to have forced several Dr's to scratch their heads because my symptoms tend to go across several different types from Classical to Vascular- which apparently isn't allowed with EDS... who knew I could break so many rules! :)
Aside from just talking to myself, another of my goals in writing this blog, is to chronicle my journey to treat my symptoms as naturally as possible and find a Doctor who shares that same goal for me. I do not have a general practitioner; I have been searching for one since getting diagnosed, though my Dad will tell you that I'm not looking hard enough since I've not actually gone to a new Dr. in over a year. I got fed up seeing new Dr.s who would tell me the same thing "You have EDS, here are some pain pills and anti-depressants". I am not totally opposed to using drugs, I would just like the opportunity to try something healthier for my body before resorting to them. So far, I am self-treating my EDS; I am constantly searching for foods that I can tolerate that will actually FEED my body what it needs with as little preservatives, chemicals & hormones as possible, I am trying to counter my weak & stretchy ligaments by keeping my muscles strong through modified YOGA & swimming- I would like to add biking to that regiment, but I need my bike fixed and can't afford that right now. :/ I really want to find a Dr. who will help me, and hopefully this blog will help me hold myself accountable to that search.
So there it is, my first post. Hey, look at me, I'm a BLOGGER!!!
In the end, I clearly decided to go ahead and start a blog, if only for the intention of having the opportunity to say things that I don't feel comfortable, or feel able to let go of in front of actual people. I'm naturally a pretty positive, look-on-the-bright-side kind of person. Not annoyingly (if I do say so myself- and hey this is a one-sided conversation to me so I can!), mind you, but when I talk about things that suck- it's usually in a way that end up making the listener laugh. I've always been that way, I hopefully always will be. Over the course of my life- a lot has sucked, and as strange as it sounds, I feel like I have to make other people feel better when they talk to me about it. Wow....that's f-ed up! This blog could totally end up saving me a ton in therapy! Or, it could possibly make me crazy enough to stop speaking to real, live people all together only to save my true thoughts for this one-sided conversation to myself. Eh...time will tell..
Anyway, back to my point: I have Ehlers Danlos Syndrome (EDS). There is a brief description of what those words mean to the right of the screen, but the truth is EDS effects people differently; so anytime I talk about it, I'm only representing what I personally experience with this syndrome. For me, EDS effects my major joints; my hips (the right more so then the left) slip in and out of their socket countless times during the day, same with my shoulders & knees. My ankles & wrists slide around when moving them as does the parts of my spine that connect with my hips, and way up where it connects with my head (ever feel your head slide around on top of your spine? It's weird even for weird). I pop & click throughout my days and pray that nobody thinks I just had some kind of weird gastric experience. I get injured really easily (subluxations, dislocations, slips, and for some reason broken fingers & toes are my norm), bruise & scar easily. I have Mitral Valve Prolapse (MVP) as well as POTS which makes me pass out, overheat, have crazy heart pounding craziness etc. pretty easily. I suspect I have dysautonomia as many EDSers do, but I've not been officially diagnosed with that. EDS also greatly effects my entire GI system. Over the past 3 years, I have developed a complete intolerance for gluten, dairy, mammal & it's byproducts and most fats- which is really frustrating for someone who LOVES to cook (and is really good at it- see, I didn't even apologize for gloating that time since I know I'm just talking to me :) ) & eat what I cook. I miss food terribly, but the aftermath of eating those now forbidden treats just isn't worth the days & sometimes weeks of horrible pain and not so appetizing events that follow.
I was diagnosed by a geneticist 4 years ago by a pretty prominent Geneticist for our area; she's been featured on those Mystery Diagnosis shows and I feel pretty lucky to have been seen by her, especially since she specializes in Pediatrics. I've not yet been typed (there are 7 different types of EDS the last I checked, though that number seems to fluctuate between 7 & 9 depending on who you ask), and I seem to have forced several Dr's to scratch their heads because my symptoms tend to go across several different types from Classical to Vascular- which apparently isn't allowed with EDS... who knew I could break so many rules! :)
Aside from just talking to myself, another of my goals in writing this blog, is to chronicle my journey to treat my symptoms as naturally as possible and find a Doctor who shares that same goal for me. I do not have a general practitioner; I have been searching for one since getting diagnosed, though my Dad will tell you that I'm not looking hard enough since I've not actually gone to a new Dr. in over a year. I got fed up seeing new Dr.s who would tell me the same thing "You have EDS, here are some pain pills and anti-depressants". I am not totally opposed to using drugs, I would just like the opportunity to try something healthier for my body before resorting to them. So far, I am self-treating my EDS; I am constantly searching for foods that I can tolerate that will actually FEED my body what it needs with as little preservatives, chemicals & hormones as possible, I am trying to counter my weak & stretchy ligaments by keeping my muscles strong through modified YOGA & swimming- I would like to add biking to that regiment, but I need my bike fixed and can't afford that right now. :/ I really want to find a Dr. who will help me, and hopefully this blog will help me hold myself accountable to that search.
So there it is, my first post. Hey, look at me, I'm a BLOGGER!!!
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