Yesterday, I went to see the wizard. I call her that, because right now I feel like she is "all knowing & powerful". My hope is that there isn't a curtain that will eventually be pulled back. The wizard is getting closer to an answer. I have osteomalacia (also know as Rickets in children). She explained it as this: its the state @ which you have such severe malabsorption, that your bones just start breaking. She said its most commonly found in 3rd world countries, and on the continent of Africa.
I am from the Bronx people. And even though it might not be the most prosperous place in the tri-state area, its NOT Ethiopia! The question now, is what is causing it. Also, my rickets (just sounds cuter), isn't even presenting itself in the "normal" way. My blood work is very, very off. Which leads to the next issue. I am now off all of the medications that I was on, from the gastroenterologist who diagnosed me with a different auto immune disease. Turns out, the wizard read his pathology reports from the tests he did, and they were actually inconclusive. She asked me "why would he put you on the types of drugs (which have some wicked side effects), if he wasn't even sure what you have? The answer in my head? Cause lady, that's how I roll.
On Sunday. my family & I are leaving for the Bahamas. I am happy to be able to go without having to explain to security why I have a gallon size zip lock bag of medications in my carry on. The treatment for Rickets is high doses of Vitamin D, Vitamin B12, & Calcium. My body @ the moment, doesn't have any of all three. I find the Vitamin D deficiency the funniest. Besides the people on The Jersey Shore, there really aren't that many people who enjoy being tan as much as me, (except maybe my son, Domenic). My first tattoo (@ 15) was of the sun! I can sit in the sun for hours & not move. Anyone who knows me, thinks that's strange, because under other circumstances, I cant sit still for longer than 5 minutes. Yes, I also go tanning. I have to be honest, I was Snookie, before Snookie was Snookie.
The wizard thinks that there are two possibilities that are causing the Rickets. #1: Celiac Disease. Treatment is a very strict diet, that would kill most Italians. For the sake of my life, I can live w/o pasta or pizza. #2: Hypophosphatasia. Now this is not good. Neither are "good", but this one, well its rare. How rare you ask? There are only 325 documented cases, in the world. Yes people, I just wrote, WORLD. The reason for this is very simple. If you have this in utero, you are not born. If I have this, I am what a miscarriage that survived looks like. Don't get offended. I have had 2 miscarriages. I can say it.
The weirdo disease, there is no treatment or cure. The doctors spend the rest of your life treating the symptoms (such as rickets). As we sat listening to the wizard, I was watching my husbands face. When he turned grey, I asked the wizard that "if" I have HPP (that's the shorter name), could that be the reason I am so tiny? I had to lighten the mood a bit. Anyone who knows me, knows I love being 4' 10 inches. I just wanted to see my husband snap out of it. Like I wrote in my last blog, as long as this isn't cancer, I can deal.
No comments:
Post a Comment