You are so right about this, I know exactly what it is, it not only includes meds but testing as well.
I started my clinical trials for Psoriatic Arthritis with Sulfasalazine, at very end of the 3 month treatment, I was diagnosed by my GP with a stomach ulcer from this, then the Methotrexate, at the end of those 3 months I woke up one morning with so many blisters inside my mouth, I could not wear my dentures, and I would guess 20, 30, maybe 50 blisters all over my lips and above, below and on the sides of the outside of my mouth. Needless to say, "it flipped out' My Gp is thankfully 5 minutes away, always takes me if I need him, well he saw me and he flipped, said he cannot understand what I was even doing on a cancer drug, that I should be on Enbrel or Simponi. So he gave me valtrex and a teeny little tube of cream, at 25% just the cream was $50.00!
Had an appt with the Rheumy next week, he agreed it was from the meds, he also told me that Insurance dictates where he is able to start, and that unless there is no benefit or if drastic side effects occur, this is where we stay, with those meds.
So lets just say this, sometimes they make you so sick, the nausea is debilitating!! Then you are off to the next.
As for the testing, gall bladder bothered me for 20 years, nothing showed up on tests, surgeon told me he would bet everything it was my GB, would gladly take it out, but the operation then involved cutting you from the center front to the center of your back, said it was the most painful of all surgeries, and it would always hurt me, that they were working on developing a new method. So I waited and suffered.
20 years later starts up again, I had ultrasound after ultraxsound, upper and lower GIs regular X-rays. Finally was taken in from work one day so sick they thought I was having a heart attack, so keep me there admit me, heart monitor, next day insist I am going to get on a tread mill. I said I could not, this cardiologist would not let up, and I finally told him that if I was well enoughh to get on one of those I would still be at work!!! As I was walking out he agreed to do the lying down kind and just as I told him there was nothing wrong with my heart, that it was digestive. Out of immediate danger, sent home.
Finally got a hida scan, the GB is supposed to open and close as you would open and close the fingers of your hand, mine does not move at all, is DEAD. Now they are really flipping, the digestive Dr trying to get me in Emergency Surgery, afraid it will rupture or worse is gangrenous. He gets me in the day after, I said no, it's Easter, I am cooking for my family, having an egg hunt for the kids, we will do it Monday, then he flips, says OH NO! So I had it out, Husband said I was in there forever, Surgeon said he had an awful time, almost had to cut me round as the dead GB had adhered to the liver, could not understand why I was not as yellow as a daffodil. Took my liver about 2 years to heal, with taking a truck load of milk weed thistle.
GB was perfect size, no stones, no obstructions, just DEAD.
I live in MD, but I am all with you Risa, and will look for such a petition for our state, I know Renie will sign it when she comes on, she is upstate NY. I will give her an e-mail about it, she can even post it on other sites.
BTW, Renie is the Moderator from Fibromyalgia, since we are supposed to get the grandbaby this weekend, she will be here if you need her. She is a super great gal, you will all love her, she is helping, Terri and I and all of you with anything she can. I think it a good idea for us to be able to work more than one site. I also Moderate on Psoriatic Arthritis and Fibromyalgia.
I want to thank you all for welcoming me and accepting me here so graciously considering I do not have a full diagnosis for Lupus, but am finding that I am surely not the only one. It is a tough one to diagnose.
Risa, glad to see that you are not letting this go, we need more people like you. Of all who deserve the best meds, it is the young, especially the young parents. No offense to anyone else, I just have such a hard time accepting that the young are robbed of their health. I feel everyone deserves the best shot at living their young life to the fullest and healthiest!
I'm with you Risa,