March is Multiple Sclerosis (MS) awareness month, were you aware of that? It is estimated that over 2.3 million people around the world have MS so I think it is fair to say that much awareness is needed and since you don’t really see commercials on TV about MS it is up to us as individuals to advocate and spread awareness about MS. I am not sure how much I can personally accomplish online but for the most part that is where I will be trying to do my part. I have never really done much for Multiple Sclerosis awareness month but this year I am going to try to make more of a difference in spreading awareness even if it is just a small difference. You may feel like you are just one voice and that one voice can’t make a difference but if everyone tries to make their voice heard then collectively we will all influence the conversation about MS online and in 2017 a conversation online is probably the best way for a message to be heard. Just think about how loud a chanting crowd can be; the spotlight of the internet is always pointed at what is making the most noise even if it just starts out as simple chatter on Facebook.
So let’s try to get back into some of the things I talked about (or forgot to) the other day. Vitamin D. A couple of years ago I had my levels tested and I was really low. So I started taking 4,000 IU of vitamin D and about a year later I had my levels tested again; still low. So I increased my intake to 8,000 IU and tested my levels again. They were just under “normal”. So I stayed at 8,000 IU but after I started experiencing drastic weight loss and stomach issues this year I started to wonder if it could maybe be the result of taking too much vitamin D. Why an amount that was barely enough a few months before would suddenly become too much I have no idea (change in diet?) but I decided to completely stop taking vitamin D on 2/18/2017 to see what would happen and since then I have not had any stomach issues or nausea. Now that could be a complete coincidence but either way, something is working so I am going to keep things just as they are. I have not checked my weight yet so maybe stopping vitamin D was not the complete solution but I imagine that since I am now able to eat more that my weight will begin to rise and stabilize. We will see, fingers crossed!
I had also mentioned that my white blood cell count (WBC) had dropped pretty low a while ago and my neurologist thought that maybe it was because of Aubagio (immune-modularly) so I stopped taking that and my WBC did shoot back up but a little while later I had received another call from his office that my WBC had dropped again… I have not seen him (or my labs) yet so I am not sure how low it dropped or why it may have but the plan was to stop Aubagio and start Zinbryta (daclizumab) which is a once a month subcutaneous injection. I am still waiting to hear from my specialty pharmacy about setting up my order but now I am wondering if I can even start this with my low WBC? I see my neurologist in about 3 weeks so hopefully I can get some answers and a better idea of what is going on with my overall health.
So I stopped taking vitamin D, Aubagio and recently I stopped taking Zoloft. I probably stopped some other stuff too but I can’t remember exactly what at the moment but after just stopping the D, Aubagio and Zoloft I am now only taking Acyclovir and Fish oil on a daily basis. I have also been taking Ritalin on an as-needed basis (usually once a day during the week) and Temazepam as-needed to help me sleep. What I am getting at is it feels good to not be taking a handful of pills every morning and I am hoping I can stop taking Temazepam soon (I ordered some noise canceling headphones to help me sleep) and maybe even Ritalin as I have been really focused on what I eat and how much exercise I do each day to hopefully help with my fatigue.
I don’t know how much all of this will help but I am beyond ready for some change and have pretty much lost any hope that pharmaceuticals will do much of anything to make me feel better. I am only hoping that they will reduce the number of relapses I experience and maybe help reduce my long-term disability so that I can focus on bettering my health without being constantly interrupted by MS. Right now it feels like I am trying to build a sand castle while someone (MS) digs away at the bottom causing everything to crash down; meaning, I have to focus more on repairing than on building.