MS Journey #38
Shorts and a T-Shirt
I had made my decision a while back. I was just looking to back that decision up with some evidence. However I had already stopped my medication for an unrelated reason; my daughter’s wedding.
I had to travel to Winnipeg on a Sunday and walk her down the aisle on the next Sunday. Sunday’s are my medication fallout days. That day is my worse day of the week. So I stopped the meds a few weeks before travel so I’d be in good shape to travel and be able to walk her down the aisle on her big day.
I’ve been contemplating for a long time about coming off the meds and my daughter’s wedding played a part in my decision process about when to do that.
So while I was contemplating weather to come off or stay on the meds I was actually off, but I had not made my final decision. As I got closer to my decision I was actually feeling the affects of being off which also played a part in my answer.
Part of my evidence gathering was my own effects of MS, my meds, and my neurologist. It’s all unsurprisingly devoid of concrete information. However I had made my decision to stop my meds and wrote just over 600 words about that decision. I was about to post that decision and I said to myself I’m missing an important component of my decision process; my peers.
So I logged onto an online discussion of fellow MS’ers and asked if anyone had experience with this decision. The first time I’ve ever logged on. And again I learned how vague and unclear this decision process is. There’s no clear evidence and for me that’s another factor about how I have arrived.
It also highlighted again how much we don’t know about MS. While I was on the online chat the answers that came back shocked me about the position people are put in regarding this decision. I felt like I was in a deep well of lost souls looking for any way to get out with no help available.
I also know I’m a cost to the system if I stay on the meds but that does not play any part in my decision (it costs me too). I also know that my neurologist does not know for sure that I’ve moved from Relapsing Remitting Multiple Sclerosis (RRMS) to Secondary Progressive Multiple Sclerosis (SPMS). Also another daughter (Registered Nurse) said to stay on the meds. A person on the MS chat room also said the same.
I actually doubt now that secondary progressive even exists. It’s just a medical description for something that has always been happening. I’m not a doctor but I do have actual experience.
So my final decision is to stay on the meds until it’s clear to me that they are not working. At the moment that is not clear.
So there you have it in three posts (MS#36,MS#37,MS#38). My thoughts drawing me to this conclusion. There are lots of us MS’ers that go through this process and this is how I arrived at my decision.
Finally, an outdoor wedding in September in Winnipeg has its risks. It turned out to be a beautiful day at Leo Mol Sculpture Garden in Assiniboine Park. And I felt so awesome walking another daughter down the aisle. She was / is stunning in every way.
Be kind
Ahimsa