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| This is not me- but it shows what I had done today. My doc doesn't draw such detailed doodles on me but I get a few pen marks… oh and a ton of needle marks and redness and bumps. |
I spend a lot of time thinking about what is hurting, why I don't feel good and what is messed up. I do this because I have found that by knocking out things, one at a time, I have greatly lessened my symptoms. I have fought tooth and nail to drag this messed up body into a place where I don't cry every night. A place where I don't have to hold a pillow over my head to counter the pressure inside my skull. A place where I no longer walk through 12 Maxalt MLT (my migraine med of choice) a month. I spent years doing all three. HEDS itself doesn't have a treatment; there is no magic pill or super therapy to make it all better. Ehlers Danlos is a genetic collagen deficiency and- as of 2012 -the medical community can barely diagnose it correctly let alone bring the collagen back. …oh no, the collagen deficiency is genetic and life long. So, if we can't treat the disorder, we look to treat the symptoms. The lack of collagen results in connective tissue laxity. In other words ligaments, tendons, and organ tissues are loose, stretchy and not at their best. I promise I won't bore you with the long sordid details about my 20+ year fight with HEDS and pain…at least I won't today. Maybe you will be lucky and someday I will document in detail the 10 MRI's that were read as negative, the 10 neurosurgeons who told me there was nothing wrong even though I had no longer had a gag reflex and the bajilion doctors who told me "you looked to good" to be sick. I bet a male patient has never heard that.
But today I won't bother you with all that. Instead you get the Cliff Note version…because there is a point to this I promise- though it isn't much of one. I had problems when I was a tween-teenager and was told it was arthritis- it wasn't. Then I was fine for years. I started having some problems right out of college and it got much worse after I got married in 1994. I think it got much worse in 1994 because 1) age just does that and 2) I started doing a lot of step aerobics; all that jumping around was bad for my neck and my ankles. I spent most of my 20's and all of my 30's trying to get an accurate diagnosis. Being a medical provider- I'm a nurse practitioner- made me believe there was an answer for me. Somebody had to know what was wrong. There is no way that the way I felt was normal…other people didn't feel this way…did they? When doctor-after-doctor and test-after-test come back negative you really start to wonder if you are in fact making it up...if it is just stress….if it is possibly all in your mind. When I was at my worst Britney Spears was at her peak and performing all the time. I remember watching her and thinking that there is no way that what I was feeling was something that stress could cause or what other people felt when they complained of a headache because there was no way I could throw my head around and dance my butt off like Britney did. I told you I analyzed this all a lot.
HEDS isn't that rare- it is just grossly grossly under diagnosed. I have diagnosed four individuals with it in the last 3 years..four people that I met casually- a friend's niece I never met, a women in my neighborhood, the receptionist at my hair salon, and a classmate of my son's. Two of them- the niece and neighbor- have gone on to have the diagnosis confirmed by a geneticist; the other two are young enough that they haven't experienced enough problems to really believe me...but they will…. So how could I have been misdiagnosed for so many years -over 30- when it isn't that hard to diagnose and I had all the classic symptoms? I still don't know. I suspect it has to do with the medical communities reliance on tests and numbers along with the loss of using their hands and brains.
Pregnancy was my preverbal straw. I had been looking for answers before I had Ryann….but the way I felt after I delivered….ugh…. I was desperate for answers. I saw doctor-after-doctor, PT-after-PT, anybody-after-whomever. I tried it all…medications….vitamins, Tai Chi, weight lifting, walking, sleeping, acupuncture, medications, craniosacral, massage, yoga, medications, diets….. I used to joke that I would have done anything a doctor told me MIGHT help my pain….I would have stood on my head, sang the alphabet backwards in Spanish while knitting if somebody thought it might help. In 2003, I was- finally- accurately diagnosed with Chiari Malformation and after my son was born in 2005- and he exhibited symptoms of HEDS- all the pieces fell into place.
So I knew what I had- and what I had passed on to my kids- but how to treat it?…hmmmm?…well I have tried just about everything and thankfully over the past 20 years I have found several things that have profoundly helped me deal with the symptoms and pain of HEDS. I do Pilates with my faboosh trainer- Amy, I use appropriate medications, I work once a week with a very knowledgable Manual Physical Therapist and an unbelievably talented OT (for Craniosacral work), and I get Prolotherapy. (Wow... I took a long time just to get to the point of the post!) Prolotherapy involves injecting glucose water (aka sugar water) into the ligaments that are too loose. The result is inflammation, increased blood flow, and while it is healing it causes scaring which in turn tightens the ligament. Let me tell you it is FUN. Like Friday night date-night FUN. F.U.N. Ok, it really isn't. It hurts. A lot. I asked my doc today if anybody ever screams and he said "ah, yeah". I don't scream…I don't cry…I sometimes give a "oooooh that one huuuurttts" but no screaming and crying for this girl. My Doc calls me "tough girl". That makes me proud and I like to think that he reserves this high compliment for me.
I am tough…I live with pain all the time. Prolo is no different. First, the actual injections hurt. Of course the needle prick hurts, the lidocaine hurts, and the glucose injection hurts. But the real pain is what happens when the fluid does something deep in the tissues…something that I cannot explain to you unless you have experienced it because the pain is unlike any other pain I have ever felt. I believe that it is because the fascia-the fibrous connective tissue covering the organs- somehow gets a "cramp"…. I can't prove this. I have asked the Docs why it hurts like that and they give me really vague and non-answer answers. The crampy pain only lasts a few moments... then I get a stiff achy feeling. It is very tolerable at this point but it does slow me down…that and the fatigue. It just wears me out...In fact, I usually spend a day or two in bed. The fatigue lasts 2-3 days..I am talking sleep all day kind of tired. But two days down and I'm good to go and ready for the next treatment in a month. I have been getting Prolo for 2 years and I can tell you, without a doubt, that my neck, which used to be the biggest issue because it caused me so much pain and caused horrific headaches..knock on wood when you read this please…my neck has been shot every which way BUT I haven't had one of my horrific headaches since June. June 18th to be exact. I remember because I was helping with recital rehearsals and it hurt so bad I didn't know how I would get through the next day. I tried to see my PT but he was booked so in a moment of desperation I stopped at his office and begged him to treat me. He did... at the expense of the man waiting- ironically a physician- whom I am forever grateful because I would never had been able to help at the recital the next day and probably would have had trouble just watching my daughter's dances if he had not fixed the alignment issues and muscle spasms that set up the headache
I complained that I was having a hard time and had been in bed a lot. I posted a lot of digital art because I do that from bed. After much…much…MUCH thought, I realized that my issues- cold sweats, pain, nerve irritation, and shaking- were all caused by something in my lower back. Odd right? I realized this after Rick dragged me to the chiropractor and he adjusted me and it went away. Honestly I suspect it was lower back all along and had arguments with the PT about it (we just have that kind of relationship) because he thought it was all disc pain and I kept telling him I didn't think it was. Last week I realized this was SI/Lumbar something and realized…hmmmm time for more Prolo.
All of this to explain why I still haven't posted lately…why I don't have any pictures of the things I have finished recently, and why my posts are lame. Hey I got an entire post out of it! Whew….maybe I should have just posted more digital art.
Laters….
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