Magic Wands

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There are times in life when we all just wish we could wave a magic wand and make something better. Times when we all want a fairy godmother a la Cinderella to bippity boppity boo something to smithereens. I’ve had the magic wand moment this whole week.

My neurological condition is still pending an official diagnosis. I am being referred to a MS clinic in a nearby larger city. In the meantime, my doctor this week gave me a MS medication to help alleviate some of my symptoms as a trial. If I have MS, this drug will help me. If I don’t then it won’t do anything.

I have not felt this good in years and I am insanely happy. I feel like I want to do as much as I possibly can this week. I don’t remember the last time I’ve felt this good, and when I finish the medication, I’m sure that I will never feel this good again.

Once the medication is out of my system, I’ll go back to how I was. But for right now, my symptoms are reduced and manageable. The symptoms are not gone. Their severity is lessened.

I didn’t realize how impaired my functioning has become until I entered this period of respite that the medication has afforded me.

It’s like someone has waived a magic wand and made me almost normal again for a week. How many people ever get a chance to say they have had a magic wand moment in life?

I still don’t have an official diagnosis. However, three different doctors all think the same thing. I’m pretty sure if the MS drug is acting like a magic wand … it might be MS. I’m no doctor, but …

I’m going to enjoy my magic wand moment for as long as I can. I want to cram as much life and living into these moments as possible.

I’m just hoping that when my magic wand moment is over that I do not completely crash down into reality.

For right now, I’m just going to say thank you for giving me my life back. Even if it’s only temporary.

Unfortunately, the drug trial I am on is not something that can be sustained long term. But I’ll take the week of respite. It’s the best week I’ve had in years. Sure, the cooling vest gives me moments of normalcy too, but those typically only last minutes or hours. This is an entire week of my life in which I feel amazing.

The weather outside is indeed frightful. We have a few inches of snow and a layer of ice. I wish I could take advantage of this situation and do something fun like surfing. I have been running, of course. Running is awesome. 

I have mostly been spending this week getting everything done that I have been behind on. In a way, I feel like it’s kind of a waste. I really want to do something fun, but other life circumstances are not cooperating right now no matter how good I feel. At least I can check a bunch of things off from the never ending to-do list so I can have a moment to say “it’s done” before everything in life becomes so much harder to do again. 

Now if only this magic wand thing could also result in the entire house being clean without me cleaning it …even for Cinderella, midnight has to strike eventually. 

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!

Down the Rabbit Hole

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Down the rabbit hole. Drinking the kool-aid. Swallowing bugs. Pick your cliche.

Swallowing bugs?

Yup. I was running last night and swallowed my first bug of the season. With so many food allergies, how do you think I get extra protein? Talk about eating on the go. Well, anyways, I was running and thinking. All my best ideas come while running.

A huge part of the reason why I left the field of social work is that I was constantly going down the rabbit hole. Now, going down the rabbit hole may be cool if you meet someone as awesome as the Mad Hatter, but even Alice had to wake up from her nap.

The problem with social work is that any good social worker worth their weight goes down the rabbit hole – you put your heart and soul into your job to help people fight injustice in the world. When you lose yourself in your job so much that you become the job. Now, that’s dangerous.

When I made the switch from social work to research and human resources, I was so much happier. Part of what made my unicorn (dream) job so sparkly was all the rules and structure. I loved having to follow research protocol and ensure that everything was following labor laws. It was neat and tidy. Yes, I cared about my job. Yes, I loved my job. Yet when I went home at the end of the night, I did not take my work home with me and everybody was still alive. I loved it.

Now, I am definitely not back in social work, but I am in the human service field. No matter how hard you try to keep good personal barriers, anyone with a heart even as small as the Grinch will be able to tell you that there is transference when you work with people. You internalize things whether you mean to or not.

My current job makes a lot of demands on my time. It has been challenging to get certain people to respect and understand my personal boundaries. However, I am not my job. I realize that may come as a shock to some people. My job is what I do for 40 hours per week to earn income to meet my needs. My job does not define me as a person.

Part of the reason why some people have a hard time with respecting my boundaries is my age. I’ve been told I look younger than I am. Therefore, people think I have all this energy and that I absolutely live and breathe my job every minute of every day!

Nothing could be further from the truth. I’m tired. I’m exhausted. I may look young, but I have been working for 26 years. I spent 20 of those years working 60-80 hours a week at 2 or 3 jobs. I feel a lot older than I actually am. I also feel like I’ve paid my dues and people should leave me the hell alone. But that’s another story.

This story is about going down the rabbit hole. No matter how adamant I am about boundaries, I am still human and therefore susceptible to being sucked into things.

I’ve been drinking the kool-aid of the field in which I work.

We all know I’ve been having issues since I was in the hospital in 2016 for stroke. I have not exactly let on just how bad things are sometimes. Pair that with a doctor who thinks they misdiagnosed me and the fact that I am surrounded by people in the disability field, and I’m drinking the kool-aid.

To make a long story short, the doctors think they screwed up. What they initially diagnosed as stroke, they think is actually multiple sclerosis. I had to google MS to see what the hell it is. Apparently it’s common for some patients to be misdiagnosed with stroke when they have a particularly bad MS episode.

According to my nurse, it looks like my symptoms go back at least 8 years.

I have no idea whether or not I have MS. I have one doctor who seems fully prepared to make a definitive diagnosis of either MS or confirming stroke with complications based on an MRI.

I’ve been drinking the kool-aid by imagining the worse. Well, if I really have this disease, it gets progressively worse and has no cure. The frustrating part is I have no idea when one of these episodes is going to strike, how bad it will be when it does, or how long it lasts.

But you know what? I’ve been living with this for 8 years already, and I’ve still been kicking ass. Yes, I’ve slowed down a lot. Yes, I’ve had some pretty bad months. I’m still going.

I’ve been falling a lot lately. It’s affecting my running. I also have a really hard time going upstairs to the second floor of my house. I mostly stay downstairs and I use a commode at night.

I’m still running.

I’m still driving.

Yes, I have problems driving (some of my symptoms are effecting my vision). I only drive when I feel I am able, I do not go long distances, and I only drive in areas that are familiar to me.

For me, I am not willing to give up and call this a disability yet. For me, as long as I’m running and driving, I am considering myself “functional.” The fact that I’m falling down, forgetting things, and going numb can all be damned.

I’ve also decided I’m not getting tested.

I’m not getting the MRI.

I don’t want to know if it really was a stroke or if it’s MS. I don’t want to go down the rabbit hole of a whole bunch of testing, medication, and treatment. Something is obviously wrong with my brain. You know what? I’m 40 now. People get old and their bodies fall apart, including brains. After four degrees, no wonder my brain is on the fritz.

Given my work history the past 26 years, I feel like I’ve already lived two lifetimes.

I just want to live my life. I’m a marathon runner. I keep going until I can’t anymore.

What I realized and learned on my run when I swallowed a bug is that as long as I am running and driving, I am not going to go down the rabbit hole and drink the kool-aid by opening Pandora’s Box.

I don’t want to know what’s wrong with me.

I don’t care. I won’t care as long as I can still do those two things.

So I have a bruise on my hip right now from where I fell down and hit the window sill. I can’t drive on the highway. Sometimes I walk into walls. I fall down the stairs. Many times I don’t know what day it is or what month it is. I am totally okay with all of this.

I am doing what I love – running. I am still functioning in society – driving. I’m not ready to say I have a disability yet.

I’ve been reading about MS ever since it was suggested, and from what I have read, it is an extremely difficult disease to both diagnose and treat. I don’t want to go down the rabbit hole of putting myself through all of that medical stuff only for them to come back and say “we don’t know what’s wrong with you.”

If it does come back with MS, well, I’ve read about the medications and I don’t want to be treated.

I’ll keep going until I can’t.

So my new goal is to not go down the rabbit hole. I’m going to stay positive as long as I can run and drive. I’m going to keep living my life. I’m not going to limit myself just because I’m not sure what my level of functioning will be in another 8 years from now.

The most significant thought I had while running and swallowing a bug was – if I was still at my unicorn job, would I even be thinking about this? Or would I just keep living my life and not worry about it? That was when I decided to not get tested. Because I now work in the disability field, I feel that I have been sucked in and needed to know what was wrong with me so I could prepare.

But I don’t want to put those limits on myself.

I’ll keep going until I can’t anymore. The only way you’re going to get me to go down the rabbit hole of testing is if I fall down that hole.

Which may be possible. I’m doing a lot of falling these days. We’ll find out.