The Biggest Fork.

I have come to the largest fork in the road of my life. I am Dorothy talking to the Scarecrow who tells me I could go, “this or that way.” Sometimes it feels like my doctors are the Scarecrow when they tell me the route they think I should take, but tell me there is no guarantee that it will work and that there will not be other consequences later in life. Sometimes I feel I am the scarecrow as well; telling myself to run any which way I can. 

 My traditional doctors want me to start an infusion to suppress my immune system. A treatment that is often given to MS patients. I am undiagnosed and will be given a diagnosis similar to MS to attempt to get approval for this drug as my insurance is currently denying it. I have been told that there is roughly a 70% chance the drug will work. They don’t know how long I will have to be on it if it will work, and what short and long-term side effects I could have. This is the only solution I have after four years of countless doctor appointments and an insane amount of testing and over 50K between premiums, deductibles, and out-of-pocket costs.

After spending five of the last eight months on high doses of prednisone, two recent spinal taps, and a lot of trauma that goes along with my attacks, I can’t say I feel great or like me. I don’t want to start a medication where the baseline is not great. How will I ever know what home base is if I am starting from feeling crappy?

I am making a tough decision and I am gambling with the vision I have left. But I have never felt that what my doctors are offering me is a sound plan when everything they advise is followed by a disclaimer.

In my four-year journey, I have raised my hand multiple times as this all started with a very bad infection and I have not felt like me since that infection. I eat well, I sleep well, and I have always focused on recovery, yet my energy has severe dips and my attacks happen when I am hit with a lot of external stress.

I made a decision that was not easy but feels right to me. I am opting for the path less traveled and one that insurance won’t pay for at all. I am working with a Naturopath MD and trying a holistic approach. This will require me to take a lot of supplements, give myself shots, and follow a diet. It will be costly and a lot of work and require focus as well as minimizing stress as much as possible. I have to find a balance of not working too much, but enough to not be stressed constantly stressed about finances. My other part-time job will be me.

I will follow this blog with another that will include what the indicators where that caused me not chose to suppress my immune system.  I will also follow-up with my protocol. I am told that I should start to feel better within a week of treatment. If I am going to do this, I hope that it can impact others in feeling like they have control over their health.