Feeling Better But Here Comes the Heat

Well, the last couple of days I have started feeling a bit better, I don’t have that heavy “I am sick and need to rest” feeling but the oscillopsia is still horrible. I am still pretty fatigued but it’s manageable now; worse than usual but not as bad as a few days ago. Although I do not feel like I did a few days ago I do feel like I am back to square one… My muscles (mainly my legs) do not feel as strong, as if I have not used them in weeks. My vision is back to how it was a couple months ago so I feel like all the small improvements I made over the last two or three months has been undone. So time to “start over”.

Despitepotatoes this I did try going on a really small walk and I was definitely feeling things “malfunction”. I also went into the garden for the first time in a while, did some watering and dug up some potatoes I tried growing. I did everything wrong so the fact that they were not rotting in the ground surprised me. They are super small but hey, I grew something from nothing in a way I later learned should not have worked.

So the last time I saw my neurologist he said I should start looking into Rituxan (Rituximab) to use on top of Lemtrada. I was a little weary at first but during this last relapse I realized I am relapsing left and right and I am tired of it. So I emailed him telling him that I want to go ahead and give it a try. We had talked about how everyone is raving about Ocrelizumab but how it is basically just Rituxan and everyone I have talked to who has done Rituxan or Rituxan plus Lemtrada seems to be doing pretty well. I just want my MS to settle down so I can start rebuilding my life AGAIN. I am also going to see what he thinks about me stopping Aubagio because it doesn’t seem to be doing anything but making me pay a $40 copay every 3 months… I see him 8/26/2016 so hopefully I can start something new after that.

In the meantime the heat is coming, the REAL California summer. It has been in the 90’s and low 100’s so far although the last few days have only been in the 80’s, pretty easy to deal with. But Monday’s forecast is set at 111 degrees and once we hit about 90 the forecast is always 3-5 degree low so I am really nervous… Nervous because it will be the first day of unbearable heat which means everyone will be running their A/C which means there is a really good chance that we will start getting brown/black outs and I have no idea how I will survive with no A/C. If I can I will just sit in the running car blasting the A/C because my room would surely hit AT LEAST 85 with no A/C but 90 would not surprise me one bit. 75 is where I start feeling uncomfortable and need to just sit. There are times where it is hotter in my room while the A/C is on than it is outside but if I open the window and turn the A/C off the heat from the attic pushes it’s way in so… yeah… I am nervous this year.

I hate California.

Oh yeah, not sure if I mentioned this but I have been taking flaxseed oil for a few weeks now, I don’t know if it is doing anything or if flaxseed oil is a better source of omega-3 than fish oil (I have heard arguments for both) so who knows. It’s better than nothing I suppose.

Also, before I go, I just want to say that my heart goes out to those harmed and the loved ones of those harmed in the Florida shooting. I am not sure why but this one really got to me, I was so angry at all the bigotry I was hearing about on Facebook so I may not be on for a few days or if I am I may be relatively inactive because again, not sure why this one got to me so much but I can’t let that anger mess with my health. I get this weird “buzzing” sensation when I get really stressed and I got that today so I knew it was time to step away.



Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

2 thoughts on “Feeling Better But Here Comes the Heat

  • June 15, 2016 at 7:32 pm

    Damn MS is a messed up disease. I’m always frozen. I can’t get enough heat. Perhaps that’s because I’m from Canada, Haha. When I went to school in New Orleans I hated air conditioning even in the summer and even in my car.
    I’ve been newly diagnosed with MS, but apparently I’ve had it for quite sometime. This helps explain all of my cognitive dysfunctions and the permanent black hole on the mri.

    About the Orlando shooting, I was more disturbed by the Newtown shootings. If that wasn’t a wake up call for US gun control, I don’t know what is.

    • June 30, 2016 at 4:35 pm

      Yeah the temperature thing is so weird! Everyone is different I suppose, just wondering why all the heat sensitive people live where it is HOT and the cold sensitive people live where it is COLD haha….

      And yeah, this country has had way too many wake up calls but I don’t know, I try not to talk “politics” here I was just really “upset” over it all…


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