I always suspected something was wrong and that something was different and odd about me.
When I was really young my mother used to tell me I was going to run away and join the circus when I grew up. I would watch TV in a weird position on my belly with my legs pulled over me from behind, over my back and my my arms wrapped around my ankles, chin in my hand to keep them there.
I just thought she was kind of mean pointing out something I never thought was odd. It was just comfortable for me and a way to stretch.
Kind of like this image, but hands in my chin…
I was always in the hospital. I spent so much time there more than home. I live in an oxygen tent. (That tells you I’m old they have oxygen nose inserts now). We had old fashioned needles in those days too. Not the more flexible plastic after the needle is removed for IV.
I was a very uncomfortable child. I was picked on tremendously because I had bruises all over my arms and wrists when I did go to school, from needles and IV’s always bruising me.
I was allergic to pretty much everything! Though I did grow out of many of my allergies. For that I am glad. But I still go into anaphylactic shock from some things, but I can pretty much live my life and just avoid allergens.
If you see someone screaming and running down the street swatting at the air, that could be me running away from a bee and I don’t have my needle. LOL
Then of course we can count the fact that I am allergic to the sun…
I knew something was strange when I got exhausted beyond a normal human from the sun and got rashes. At first I never thought it was anything super serious. So I kind of just avoided the sun and tanning.
Then I had weird things happen like my hair started to go chunky, and a guy I used to date told me, “You look like one of those monkeys with the tufts” then giggle because I had tufts at the side on top. Which would easily be overlooked, but I had naturally long hair all one length and it was unintentional.
I was very tall and very thin. I lost weight then was thinner, and had energy for days in my twenties. I never went to the doctor because I never thought it was anything super serious, because I was not sick and it didn’t effect my daily life at that point.
And who goes to their doctor to say, “Hey doc, I’m really thin now and naturally thin, but I can’t sleep and I have energy for days?”
Especially when you are busy running a business trying to get ahead, studying, volunteering and practicing martial arts!
I got sick a lot with annual bronchitis sometimes pneumonia, but that was since I was a baby. I had a better bout of health while I lived in the USA and I was blessed with good doctors and an overall better life. Stressful but better. Better because of excellent doctors that generally have standards and listen to their patients. At least that was my experience.
I was not left sick when I went to them. They listened to me when I spoke of my health history and they took it seriously when I got sick.
I actually had my first flare in the USA, but like many sick people and autoimmune patients, I just thought it was stress of being busy and stressed out from city living. Add deadlines and things that stress business people out.
So like many people with lupus, hashimotos and other diseases, I put off Doctors thinking rest and time off would help. I did go when I got bronchitis but never mentioned everything else because I thought it was not important at the time.
That was a huge mistake!
My mouth ulcer, hair loss, and difficulty breathing was a bigger symptom than asthma and stress I later found. I actually thought I encountered mold as I had that same feeling I get when my asthma is agravated by mold in mold season. But there was no mold. I kept getting migraines too.
I have had migraines since I was thirteen.
My second flare was when I moved back to the country I moved to temporarily. Then I realized it was serious.
It was the same thing but worse. I had levido reticularis, sweling in my upper abdomen, and kidney pain in random bouts. I had a lung function of 60% for five and a half months. Migraine after migraine. And absolutely horrendous doctors. Nothing like American doctors I encountered at all.
They blamed my asthma even when I said I have been asthmatic since I was a baby and very well aware what asthma feels like. And Showed them my levido which they ignored. And huge bouts of prednisone never even came close to helping me breath.
Even my pharmacist was worried and asked me, “What the hell was my doctor doing this was dangerous!”
Google didn’t help but gave me some ideas. But I am not a doctor. I didn’t go to medical school and all google does is show the worst of the worst in diseases.
I finally recovered my breathing. and the purple ugly levido left my legs and arms.
I had tried everything and did heavy duty body detoxes, went on a strict diet. For months I suffered.
When I was relieved of the serious symptoms I never did fully recover my strength or endurance.
But I left, I hightailed it out of their on a one way flight! I never wanted to experience such a horrendous place again. Or such unprofessional doctors.
It was a few years later that I had some lab work done. And I got a positive ANA. And A positive test for hashimotos. I also found out I had EDS (Ehlors Danlos syndrome in my immediate bloodline via my mother who I call my hatchery)
I have hyper-mobile joints, skin that just tears apart after surgery if not using old fashioned stitches. (I found that tidbit out by accident the hard way after a surgery).
And when i started finding I might have EDS I found that guys were not just trying to get in my pants when I was younger. I really did have velvet soft skin. Recently someone touched my cheek and they were shocked how soft my skin was.
Now I know why.. And to think some people spend years trying to do what was natural to my body and genetics.
Altogether it took ten years to get answers. And once it was absolutely serious and obvious, it took 6 years because I made the mistake to head back to the hatchery as promised. I touched on that in a previous post.
I call it my hatchery because I tend to use humor to get through the family God gave me. And it’s easier to use humor when people ask about my family. It’s just more simple to say “Oh I was hatched.” people laugh then move on and I don’t have to go through any discussions of them.
But yes… my visit was supposed to be be only just under two weeks. But it turned out to be much longer.
And it caused me to have a horrible pregnancy that my sons father and I planned to have after we figured out my health.
So clearly I am different, something was wrong, and it just took a long time to figure out it was serious, and then even longer to get answers because of geography.