I know I have not been updating a lot recently and have really fallen out of the blogging realm, but I have been trying to figure out my health since March and have had some real struggles which happens to most of us living with an autoimmune disease. We might have several years of feeling like we have this under control only to wake up one morning and have our health take a downward spiral. Luckily my disease is still offering my symptoms that I can live with meaning I’m still working every day, teaching my yoga classes and participating in life. The hard part is that I don’t have an ounce of energy left for anything else. That is a probably for so many reasons but mostly because dealing with an autoimmune disease means we have to learning, studying, trying, trialing, succeeding and failing all the time and getting lazy about it doesn’t help anything.
I was faced with a choice for a medication change. I could continue taking my medication but instead of taking 1 time a day on an empty stomach take it 2 times a day both have to be on an empty stomach. This gives me an increased dose and spreads the doses out during the day in the hopes of being in my system longer and being more effective. The other option is to try a new biologic drug on the market. This drug is the first FDA approved medication for Lupus & Mixed Connective Tissue Disease in 50 years. Not since Plaquenil has a new drug been FDA approved. Well here we are. Talk about trials and errors, since this drug is so new there is not enough long term research for this medication. However, without people to try it how will we ever get the long term affect studies we need? I say this but also know that I’m not in a desperate enough situation to be the guinea pig so I have to give this real thought and weigh all my options. I’m not 100% opposed to trying it out but need time to think about it as well.
The problem with the first option is that finding 2 times a day when your stomach is truly empty. Morning is easy, but later in the day it gets harder. I was thinking about this so much over this past weekend that it was stressing me out. I was feeling like a prisoner in my disease which I haven’t felt for so very long. I have been living with but also managing my MCTD for 14 years and now I feel stuck, a little afraid and frustrated. I sat in the sauna thinking about all the years that I felt relatively pretty good. Remembering where my mind was, how my body felt, what I was doing on a daily basis. I was a student of my disease, researching all the time, choosing health as my other full time job, trying different things all the time and journaling what worked and what didn’t. I left that sauna knowing that I was becoming a student again. I got out my books, journal, notes and started to study. Cleaned the pantry and cleaned the fridge and starting new. It will take some time to figure this out but I have time, in fact I have let the last year go by being a bit lazy about my health. The focus begins again and process is about to start over. I am going to embark on the AIP – Autoimmune Protocol in order to get my body and mind back to base-line. The AIP is a regiment of nutrition, exercise, meditation, medication (if prescribed by your doctor), sleep, and stress management. It is strict, it is not easy to adapt, but once the body is back to base-line then the healing, transformation, and new normal can begin.
I have the support of my husband and feel grateful for his strength as I sort this out. I do a lot of talking out loud and even crying and yelling which he unfortunately gets caught in the middle of, but sometimes it just takes his quiet demeanor to keep me in check. Together we will figure this out with the help of other resources as well.