Ok y’all know I am childish. I rented and watched Frozen II all by myself. Lol. I didn’t think that it was particularly suited to kids which a majority of animated movies are not. I enjoyed it but it was pretty heavy and not a lot of funny parts. There was one part with Olaf calling out names that tickled me for some odd reason. I giggled for so long. Lmao. If you watch the movie you will know what I am talking about. And if you laughed like I did please tell me in the comments.
I have been working on the blankets that I am going to giving away at the MS walk so I have put my writing on hold. I want to do it all! So I set aside my crochet today. It is a beautiful day in Toledo and I am sitting on the water writing. Listening to the seagulls.
I am kicking off Multiple Sclerosis (MS) Awareness Month on this eighth day of March. I talked about MS last year in 3 separate post. Missing Myelin 1, Missing Myelin 2 and Me Pt. 3, My MS Story. I will not bore you with those details once again. If you haven’t read them, I recommend you do. Pretty good posts if I do say so myself. A few things have changed since last March but not much. The good news is I am still mobile, working and determined to live the best life that I can. The bad news is, I still have MS. Lol.
I started a new medication called Ocrevus and I am not a fan. Ocrevus is a twice yearly infusion treatment that works for people with Relapsing Remitting Multiple Sclerosis and people with Primary Progressive Multiple Sclerosis. The first infusion is administered in 2 parts. You get your first 300 mg dose and follow up with the second 300 mg dose totaling 600 mg two weeks later. The next infusion given 6 months later is the full 600 mg dose. The treatment process as far as receiving the medication went well. The facility where I received my treatment was great and the nursing staff was awesome. I did not have any side effects in the process and it was completed within the time it stated. But there is a problem. After the first 300 mg dose. I felt better. I walked a little better and generally felt like I had more energy. After receiving the other 300 mg dose it went downhill. My walking became worse (I walk like a penguin). With the struggle to walk normally for me, I will tire out quickly. My legs feel like I have on cement shoes.
My goal is to give medications that I am prescribed at least a year. I have a tendency to give up too soon when something isn’t working health wise. So I make it to November. It is about 2 – 3 weeks before my next infusion and I realize I am moving a little better. I am not struggling as much to get from A to B. I am feeling better in general. I read in one of the forums people saying they can tell when they are due for their next infusion because their MS symptoms start to get worse. So I say maybe I am getting better and feeling better because I am due for my next infusion. Maybe the medicine is actually making my life difficult. But I said I would give it a year, so I get my next infusion, the full dosage. Well I am sure at this point y’all have figured out what happened. I am back to walking like a penguin, tired as hell and struggling to get around.
The worse part, this shit lasts for 6 months. Why????? Lol. I have about 2 and a half more months before this wears off. There is not any scientific evidence to back me up but I think that it is just too much medicine in me. My body can’t process it. My body has never worked well with medication of any kind. It’s like it knows it is not suppose to be there. I am definitely changing medications. There is a shot that I can inject into myself once a week called Avonex. I am going to talk to my neurologist about it at my appointment in April. Still no scientific evidence but maybe this would be better because it is in small doses. I previously injected myself with a medication called Plegridy that was bi-weekly. I would usually feel better on the second week as the medication would start to wear off. Too much medicine people. Lol.
I have a few more posts I want to get out this month. The one that is going to be so important is on hold because I don’t know when I will get the approval. I submitted for this device that will help with my mobility but it has to be approved first. I don’t want to give too much detail yet. I am hoping for the approval before the end of March. It would fall right in line with Multiple Sclerosis Awareness month. We will see.
I hope everyone is doing well and working hard on your goals. I am still rooting for you in whatever it is you want to accomplish this week, this month, this year. You got this!!! Continue to be well and whole. Much love to you all.