I so wanted to stay caught up with Holiday Boot Camp. Alas the Behcets and its complications have gotten in the way. So first for those of you that are here for the card, here's my second card for Day 1.
Embossing Folder: Sizzix Tim Holtz Snowflake
Dies: Spellbinders Stars (The Star is scored from each point to give it dimension, Memory Box Co Bow Die,
Magnolia Doohickeys Magnolia Tree Die
Paper and Cardstock: Hero Arts Snow Folded Card, scraps
Gems: Hero Arts Green and Red Gems
Adhesives; Ek Success form circles, Glue Glider Pro
And then there's the Behcet's saga;
I am at the point in my treatment that there is not much left to do. The bottom line is that there is no cure or Behcets. And it is causing massive devastation. I now have 5 heart stents because of it. Some days the joint pain is so excruciating I can not walk let alone pick up a pair of scissors. The language issues are so bad at times I can't even call my doctor because I can not be understood, instead this past Friday I had someone drive me to her office so I could talk directly and use sign language to communicate.
So as a last ditch effort we are using Remicaid ( a milder form of chemo, an immunosuppressant) to try and kill off my immune system. However Remicaid is not approved for Behcets so my insurance will not pay for it. It is thousands of dollars for each infusion. Thankfully the drug company is providing the remicaid but the infusion part is not covered. My insurance is paying for for part of the infusion but it still costs me $200 every two weeks.
This past week the infusion center changed their protocol and used Claritin instead of Benydral before starting the infusion. My body builds antibodies against the remicaid so I need an anti-histimine before getting an infusion. Well I developed a severe reaction to the remicaid because the Claratin was not strong enough. I had hives the size of a 50 cent piece, my throat swelled, my chest hurt and I thought for sure my head would explode. Because they had to push the Benedryl through me so fast it triggered the Behcet language issues.
They pumped me with a second round of IV steriods. I got better until that evening. That evening my lower back hurt so badly I actually considered going into the ER for pain meds. I have avoided pain meds for 5 years and have instead used scrapbooking to avoid the pain meds because I don't like the side effects and can't function. As a single mom I have to function. The only time I use pain meds is in the hospital and then I refuse to use them at home.
Well after I went into my primary that morning I was sent to the ER by her and my rheumy. She told me I was having a severe reaction and needed a MRI, an EPI pen, steriods, EKG. She told me the rheumy and she were calling the ER to let them know I was coming. I was only 5 minutes away.
I was taken to a bed and NOT given a call light. The sides of my bed were left down. No one checked on me for 31/2 hours!!!!!! When the doctor finally came I was treated as if I was wasting his time. According to him I had no back pain because I was able to sit up. PLEASE I have had back pain for over 10 years on some level. I have learned to cope through physical therapy. He treated me as if I was a druggie looking for drugs. All I wanted was the reaction to be reversed. So he sends me home and I as I am getting ready to leave my stomach gets upset. So then he decides to do a CAT Scan. And my blood sugars are sky high because of the steriods the day before and he will only let me have 1/7 of my dosage of insulin and expects a significant change!!!
In the meantime my friend who has a medical background calls three times to check on me and they refuse to tell her anything, after I told them she was my advocate!!!
Thankfully I am home now and feeling better. But I am stuck with confused feelings about should I continue with the Remicaid? I am told it was the Claritin that was the problem. But it was so frightening. And now my thoughts are should I let the Behcets take its course or risk the Remicaid killing me faster...but part of me is still holding out hope that the Remicaid might slow down the Behcets.Scott really needs me to be there for him. While he is gaining independence skills he still has a long way to go. It's horrible to be in a position of wondering if the medication is worse than the disease. I wish answers were easy to find.....
Thanks for listening:) I know there are people out there who are in a much worse situation. I am just hoping that maybe by sharing my story it will help someone else find answers they need.
Tomrrow holds hope:)