I have always been EXTREMELY double jointed, until I had our first child, I could lay on the floor on my tummy, arch my back, throw my head back and suck my toes. Yes, I could make my body into a circle! I was always called bow-legged and have been told thousands of times that I have no bones and that I was as flexible as a cooked noodle.
From the age of 3 until close to 20, I was an avid gymnast. I loved gymnastics and my coaches were all so amazed what I could do with my body. My flexibility actually hurt my gymnastics ability a lot. Literally! I always seemed to get hurt on the balance beam and I was terrified of that thing! I hated beam sets, I knew I was going to get hurt. Finally, when I got hurt the last time, Papa let me "give it up". Whew! I never stopped tumbling though! I have always been the person to do cartwheels or back flips when excited and I do like to do my tricks! Tricks? Yes, I can do all kinds of weird things with this oh so stretchy body of mine and it feels great to do them!
I never knew that my double-jointedness/hyper-mobility would cause any issues or that any issues in my body caused it. I just thought it was the way God made me and that it was just a little bit more about Ila that made people say "girl, you are 1 in 1,000,000! Other than having actual injuries, the first time I remember being in random, extreme pain was when I was about 22. I was dissecting a cat in an anatomy class and when I started to look up from the cat, I could not lift my head. It was excruciating and stayed that way for almost a week. I saw several doctors, one wanted to do surgery and I walked out. I finally saw a chiropractor in Augusta, Georgia that explained to me that my Atlas and Axis were turned and dislocated at a very odd and dangerous angle. She didn't adjust me then, I did therapy with her several times, relaxed in Epsom Salts several times a day, took loads of Advil and one day it was just fine. Just like that pain came, it left.
My next episode came years later, we lived in Heidelberg, Germany and I was the Director of Customer Service Training for that region of Europe. Andy was in Iraq for his 3rd trip to the Sand box and our oldest son was 2. One day my ribs started hurting, it was an odd pain, hard to breathe and I could not get comfortable. After I had everything from my brain to my sacrum scanned, poked and prodded, I was told that I was crazy! We already knew that but I knew something strange was happening to my body. My boss told me to go to her massage therapist and I politely declined. I am a licensed massage therapist and I was convinced that the massage from her therapist would be pretty bad, just like most others. Well, I finally broke down and went to see Ricky Welch, her massage therapist. Folks, I was so wrong in prejudging this man, he was and is AMAZING! Ricky massaged me and by the end of the 1/2 hour massage, every joint in my body had been adjusted. Ricky told me that I had 6 discs that were "out" and 2 ribs that were causing my major discomfort. I saw Ricky once a week until we moved from Germany to Belgium. I told him it was his job to "keep me in line"!
After we had our second son, in 2008 I started to notice some very weird things but they didn't rear their ugly heads very often. I remember sitting on the porch one night, talking to my dear friend Jessica and asking her; "Do your toes ever tingle for no reason?" She laughed and said no. Then I noticed that I would get very dizzy sometimes when I stood up and I would be freezing cold but sweating like a whore in church. I am a health buff and love to study and learn about the human body so this really perplexed me. I chalked it all up to Post- baby hormones and loosing 75 pounds in less than 10 months. It did bother me that I was so tired all of the time and to hear Andy tell it, I gave a new meaning to the word bitch.
When we moved back to the states for Andy to go to graduate school, I was so happy to be back in America! I won't tell the long, nightmare story here but we wound up in a house that we rented on Craigslist from a very reputable person (yeah right) and it turned out really bad in many ways. The house was loaded with lead, arsenic, mercury and cadmium and the people that owned the house had construction done while we lived there. Well, our oldest son got really sick from the house and I did as well. Our illness started almost immediately after we moved in, less than a month from moving in, we were both up to our ears in feeling yucky. Our son developed psoriasis on the backs of his hands and in his scalp so bad that I could not find a soul to cut his hair. He would wake up some mornings with his face covered in blisters that resembled chicken pox. As for me, I had excruciating headaches regularly, something I had never experienced. I was unbearably tired most of the time and the dizzy, sweaty and cold episodes became quite regular. I started to get random sores in my mouth and nose and I felt like crap most of the time.
I told my Primary doctor about this over and over. I would beg her to please do blood work, tests and anything else that might help us know what was wrong with me. I was told again and again that I was just depressed, that doesn't need blood-work and that I had 2 little boys, I should expect to be tired. I take Adderall for ADD and she started me on Cymbalta for depression. I told this doctor that I was not depressed, that I was sick and she didn't believe me, she'd up the dose of depression meds. Well, we found out the environment in the house was what was making Cole sick, so we moved. AHHHHHH! We moved! It was great! We found an amazing house, way south of town, with great landlords, lots of room, a fantastic in ground pool and no worries of yuck where we live! When we moved out of the house, Cole, our son, was physically better in less than a month, his skin condition cleared and has never returned! Well, I started to get sicker and sicker, the joint and back pain was excruciating, the fatigue was unbearable and those bumps would just appear from nowhere in my mouth and nose. I would go to the Dr. for those every time they would appear because my Dr. said they were MRSA and that alarmed me because of our children. I should have listened to my best friend Val when she and her brainy husband Matt would say "THOSE ARE NOT MRSA". But, I only listen when I want to and I guess I didn't want to listen. After all, what else could cause the odd bumps!
Well, it just so happened that I got the "bumps" one day when I could not see my primary care doctor and was worked in to see her partner. I loved him right away, he reminds me of my cousin Milton that is also a D.O. Well, he asked me what was going on and I said "these bumps that SHE calls MRSA are back so I guess I need more Cipro. Well, Dr. Wonderful Robert Kaiser took one look at the bumps and said "I'm ordering blood-work, that's not MRSA". I was SOOOO excited. We talked about the fatigue, weight gain, joint pain, dizziness and just about everything else that had bothered me in the past year or so. When the bloodwork came back, he referred me to a rheumatologist because my ANA test came back positive. My rheumatologist is a great man, Dr. Nick Staniero, I think he looks like Tim Allen and he is just as funny and fun-loving. The first day I saw Dr. Strainero he said "you may have Lupus, we'll have to do another panel but I am positive that you have Ehlers Danlos Syndrome so I am going to refer you to Dr. Mark Lavallee." He told me that the EDS may be causing ALL of this! Well, the blood work came back long before I had my appointment with Dr. Lavallee and it did confirm that I have Lupus. My ANA isn't sky-high but my Anti RNP was pretty elevated. Dr. Straniero told me to see him in 2 months, start the Plaquenil and to consult with Dr. Lavallee, he promised that I'd really like Dr. Lavallee...I wasn't so sure. I just knew I was about to be sent to ANOTHER Doc that thought I was some crazy, whining, nut that suffered from hypochondriasis. After all, that is what my family doctor, along with my Aunt had convinced me of.
TO BE CONTINUED...
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