Fragments of Hope

After a very few uncomfortable, humbling and isolating months, I have finally been approved to start a new (and great) therapy for my Crohn’s. I’ve bee holding on to a fragment of hope that this med will prevent me from having my ileum and much of my small intestine removed that has been floated around by 2 Dr’s. & my surgeon. To be honest, that little fragment of hope is all that’s kept me going.
I went in for a routine exam for my autoimmune arthritis on Monday and left with 2 diagnoses, one very unexpected. After all of the steroids I’ve been on, it seems I’ve developed the beginning stages of Avascular Necrosis of my left hip. Previously, I had been diagnosed with hip dysplasia, which is a genetic deformity of the hip. As much as I wanted to believe that my hip was taking a beating from the long-term results of having total knee reconstruction over 15 years ago, it seems that is not the case. Hopefully, with the help of my new biologic, the inflammation between my SI joint will calm down and will hopefully begin to heal. Sadly, until my body’s inflammation calms down, I will need small doses of steroids to help with that. When my biologic starts, it will help with the inflammation that is currently invading my hip.
Much of my steroid use has not been an option for me. Unfortunately, I lost my insurance twice within the last year, leaving me with no other option than to alternate between two steroids (this is not a good thing – I’m well aware how dangerous steroids are on your body long-term, but clearly there was not much choice). Going through all the hoops and hurdles that even the highest up at a pharmaceutical company helped with, I still was not able to receive the medication I needed most. I’m devastated at this new diagnosis and to be honest, I’ve had little time to digest it. But, I have hope. 
Between my Rheumatologist & my Gastroenterologist treating my autoimmune diseases, we have a plan I finally feel comfortable with to treat ALL of my conditions in one biologic. I still need to figure out my treatment plans with all new specialists regarding other conditions and complications due to my illnesses, but for the first time in a very long time, my hope feels real.
This last year has been one of the most difficult, challenging and alarming of my life. So, when I listened to my voicemail this afternoon after waiting for more than 7 months to be put back on a biologic, I sobbed. It’s taken 7 months for me to be approved for this drug and finally, it’s within reach. 

For anyone who has never had to worry about getting authorization for medications as serious as saving large parts of your intestines, I pray you don’t have to go through the pre-auth process for a drug you need.

Sadly, that’s how our healthcare system works. There are many flaws. But, there are many people who want to help. My GI yesterday saw the desperation in my eyes and knew I needed to be on this medication long ago.

Many things opened my eyes throughout this process, but the one that bothers me the most is the fact that I waited 3 months on Medicaid to be approved for authorization to start this med, only to lose my coverage for making $7 over what I was allowed to make under that coverage. With my current insurance, I was approved in 1 day. (yes, there will be a blog to come regarding this)
As for today, I’m going to go take a nap. Because fighting 2 flu strains with very active autoimmune diseases, with a compromised immune system – is no joke.
Please keep my story, and many stories of my friends who are ill, in the back of your mind while a change to coverage is made and while we as citizens have the opportunity and privilege to vote on items like health care.



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