4 years, 1 month, 28 days

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Normal (noun): The usual, average, or typical state or condition – as defined by google.

I’ve had this un-diagnosed neurological condition since at least 2016, but probably longer. 2016 was the year I was in the hospital and my symptoms not only worsened, but whatever disease I have decided to ramp itself up to the Next Level like a video game on steroids.

First, I was told it was a stroke. Now, they are looking for multiple sclerosis. I’m having problems getting medical care, which does not make life any easier.

Going with the idea that I might have MS, pending neurology confirmation, I ordered some MS cooling vests to see if they would help at all with some of the “imaginary” symptoms I get when it is hot out. Imaginary is according to the primary doctor, who does not seem to take me seriously (even though she was the one who referred me to neurology).

I took great care to measure myself for the MS cooling vests and I am glad I did. When I put one on, I discovered that the phase change packs were situated so that there are two on either side of my spine. I say phase change packs because that is what they actually are – these are not ice packs, but some other technology. The placement of the phase change packs is key to their efficacy, which we will get to in a moment.

I wore the cooling vest for my run tonight. I had this idea that it would just keep my body cool similar to air conditioning. Boy, was I wrong.

But I was wrong in the best possible way.

Those phase change packs are situated on both sides of your spine not to cool your body, but to cool your central nervous system. Apparently, in people with MS, if that is what I have, heat causes your nerves to misfire. By cooling the central nervous system, your nerves are less likely to misfire, and you are less likely to have heat-induced symptoms.

My central nervous system was definitely cooled by the cooling vest. My spine was cool. My brain inside my head was cool. It was the weirdest but also the best feeling. It felt similar to an ice cream headache, only without the ice cream and without the headache. I did not have a headache. Nothing hurt. Yet my brain inside my head physically felt cool while the outside of my body was sweating buckets.

It was 86 degrees out when I went for my run. Not the best running conditions, even if you do not have a neurological problem.

It was the best run I have had in 4 years, 1 month and 28 days.

It’s been a long time since I have been this happy to be that miserable.

I was sweating buckets. I was uncomfortable. But it was a “normal” uncomfortable. It was the type of uncomfortable that you get when you run 4 miles in 86 degree weather like a crazy person. It was the best feeling.

What made it so great was that it was the first run I have done in 4 years, 1 month and 28 days where I did not experience any of these neurological symptoms while running. I was not dizzy, I did not feel like passing out, my vision was not blurry, my vision was not black, I did not trip, I did not fall. I had no brain fog. I was able to think clearly for the first time in a long time.

I felt normal.

I felt like any other idiot running 4 miles in 86 degree weather, because, really, you shouldn’t do that.

I basically wanted to see if this cooling vest would work. It does. It doesn’t work in the way I thought it would work. It works even better than that.

I thought that the cooling vest would cool my whole body down and kind of give me a competitive edge to run in that heat. The vest did no such thing. The vest cooled down my central nervous system so that I could run normally. I had no neurological symptoms. I was just a crazy runner sweating buckets on the outside. Only my spine and my brain inside my head were cool.

The cooling vest makes me normal per the definition at the beginning of this post. The cooling vest puts me back on level playing field again. It was just me and my body pounding the pavement on the road minus all neurological symptoms.

Now granted, running in 86 degree weather is completely stupid.

The point is that if the cooling vest lets me run normally again, what else can I do like a normal person that I have not been able to do for the past four years?

I’m excited to find out.

I want to surf. I want to drive further than 8 miles. I want to be able to go back to the beaches. I want to go to a baseball game without getting all these neuro symptoms where my body feels like it’s drunk when the only thing I have had to drink all day is water with lime slices in it.

I want to feel like a normal person and not have my body betray me every time I try to do something.

Tonight, I had my first normal run in 4 years, 1 month and 28 days. I cannot say how grateful I am to have this cooling vest. I feel like I might be able to actually get my life back.

With the doctors around here being absolutely stupid, I may never find out whether or not I have MS. Whatever it is that I have, this MS cooling vest is looking like it is alleviating all my heat-induced symptoms.

I can’t wait to use the cooling vest more and see what else I can do like a normal person again. Summer is one of my favorite seasons and I have not been able to enjoy it for years.

Bring on summer. With my MS cooling vests, I’m ready.

Update:

So, I’ve had some people ask me about which cooling vests I chose. I went with these really great vests called Under Cool from Therm Apparel in Rochester, NY. Many people have asked me recently if I’m wearing my vest because they don’t see it. Yes, I am wearing it! The fact you can’t see it is the whole point!

The Under Cool vest goes under my shirt. As a runner, I chose this vest because it weighs just under 2 pounds. Other cooling vests I researched were about 6-8 pounds. When I run 26.2 miles, I don’t want to feel like I’m in Marine boot camp lugging around a bunch of extra dead weight.

Sizing was a huge selling point for me. I weigh about 96 pounds. Most cooling vests I researched were bulky and only available in S,M,L sizes. Under Cool was available in XS (which I have), as well as youth sizes. Some of my baseball shirts are actually youth sizes, so having a wide range of sizes was key. Measure carefully, and your vest will fit well. XS is doing it for me.

Please note, I do not usually push specific items, but since you guys have asked, it is definitely Therm Apparel. I have not received any sort of compensation for giving them a plug, but if you need a cooling vest for neuro issues and run marathons like I do, then this is the vest for you! I also got the “adventure bundle” so I have one vest for running and one vest for “every day use.” I have two sets of phase change packs that allow me to be out longer. So far, I have only been out in my cooling vest for a maximum of 3 hours, but that is only because I get so tired.

I will be sure to post another blog on my vests!

Happy Veterans Day

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Happy Veteran’s Day. This is the phrase I was attempting to say two years ago today. I’m not sure exactly how it came out, but that was the day I landed in the hospital with stroke symptoms. Today is my 2 year anniversary of the day that changed my life. Nothing has been the same since. I’ve had to slow down whether I like it or not. And, I don’t, by the way. I don’t like it – the slowing down or all the changes.

To celebrate the 2 year anniversary of my stroke, I participated in communion at church today for the first time in my life. Today was the first time that communion has ever been accessible for me since the onslaught of the multiple food allergies in my mid-20s. The most difficult allergen to avoid in this situation, is egg. Have you ever tried to find gluten free bread that is also egg free, dairy free and completely nut free? Let me know, because I don’t think it exists on a widespread commercial basis.

Someone at church went out of their way to find a local bakery in town who was willing to take on, tackle and accommodate all 5 of my food allergies. It was achieved successfully. I can’t tell you what it meant to be able to participate in communion with everyone else today and not be left out. It’s one of the few times when I have actually felt like God loves me. Someone actually baked something that didn’t kill me. There’s a first time for everything.

This is significant because I’ve been struggling lately. Ever since I bought my house, I’ve been experiencing negativity from the community. Pretty much, I’m being kicked while I’m down. I’m still down, by the way. But at least I’m not being kicked any more.

There are some people in this community who are not pleasant to me due to one of my “identities.” It happened again today. I try to blow it off and balance it with all of the people who are going out of their way to make me feel welcome. I figure there is no point in trying to make anyone else happy. I’m just going to be myself and people can either take it or leave it. I think that’s a pretty good attitude even if it doesn’t make the hurt any less.

Even though my life feels like a free floating shit show with no anchor right now, I am thankful and grateful for so many things. I just need some time to get my feet back under me.

I still have challenges post-stroke, but am considered “fully functional.” I am thankful that I am healthy, working, providing, and running. Running is definitely the greatest gift I have ever received in life. My goal for 2018 this year is to exceed the number of miles I ran in 2017. That would be an improvement.

I’m happy that two years after 11/11/16, I can say “Happy Veterans Day,” and it actually comes out sounding like “Happy Veterans Day.” I’m not in the hospital connected to tubes and machines being rushed into a machine that takes photos of my brain.

Happy Veterans Day. Thank you for your service that allows us to be free.