Post #2 – My Greatest Journey (Chapter 1)

Disclaimer – The following post is not intended to diagnose, treat, or cure any disease or sickness. Please use caution if any parts apply to your specific situation and contact a health care professional for further advice. 

I decided I have enough to share to make this a weekly post. I am going to start with my story and will continue on for several weeks. I appreciate all the support so far on this and please don’t hesitate to reach out to me with feedback, comments, or questions. That is kind of the point! As per usual, if my POTS content doesn’t interest you (I wouldn’t blame you), skip to Part 2.

Part 1 –

My POTS journey has been long. It has tested me in ways that I didn’t think I was going to be able to overcome. I started to think (and actually believe) that I was going to die when I was 24 years old. I told Rachel for the first time in my life, I didn’t like being Jarod.

Before I go into the start of my journey, I want to explain what we think is most likely the cause of my POTS. The doctors believe that I probably have some form of autoimmune component to my condition that is creating wonky reactions in my body. Essentially signals being sent to and from my nervous system and brain are out of line due to antibodies. It is important to know this because as with most autoimmune conditions, causes can be from genetics, diets, environment, stress, a virus, or other factors the medical world is not even aware of yet. Also of interest, I have a history of autoimmune issues. When I was a teenager (14 and 15), I was diagnosed with, and treated for, Juvenile Rheumatoid Arthritis (JRA). This is now in remission and has been since my freshman year of high school.

Rachel and I got engaged in December of 2015. It was a festive time in my life. I was a year removed from college, had a stable job, and was going to marry the love of my life. I had what I thought at the time was a strong relationship with God. I had lots of friends. Life could not have been better. I did suffer from a subtle jealousy towards my friends who had moved to bigger cities and were making more money, but I had nothing to complain about.

In the midst of my life going all according to plan, I was having an issue with frequent severe sore throats. I finally decided enough was enough and I scheduled a tonsillectomy for that February. This was a big deal for me because I suffer (and always have suffered) from medical anxiety due to the JRA stuff I dealt with when I was younger. I stress and worry about my health, to the point of making myself sick. For some reason I could not shake the thought of something going wrong during my surgery and started obsessing with the horror stories of tonsillectomies gone bad. I actually started researching all of the people who had died following this procedure. It was that bad.

During all the stress leading up to this surgery, I came down with a virus that I now believe was at the very least a contributing factor to my development of POTS. It wasn’t the worst bug I had ever caught, but it sure hit me hard. My head was full of pressure, my eyes felt like they were going to bust out of their sockets, and I felt like I couldn’t stand for longer than a few seconds without feeling like I was going to fall. I took a couple days off work, tried to rest, and figured I would be back up and running soon. That was not the case. I forced myself to go back to work, but it was a struggle. I finally went to the doctor for my symptoms and he thought I could be dealing with a bad sinus infection due to a deviated septum in my nose. So, on top of my tonsillectomy that was coming up, I also was having a septoplasty to correct my crooked nasal canal (hoping it would allow my sinuses to drain better and relieve me of my symptoms).

I continued to have an unrelenting headache, eye pressure, fatigue, and troubles simply functioning during each day leading up to my surgery. Despite my increasing fears about something else being wrong, we decided to go ahead with the surgery as planned. From a technical standpoint, everything went smooth as could be. Tonsils got taken out, nose was fixed, and I was on the road to recovery, and I thought I would be back up and running soon.

Again, this was not the case. Days passed, headache still there. Weeks passed, head pressure still there. I realized that my symptoms were not going away. I was still going to work each day (at the time as a business analyst for a small local company), but as soon as I got home each day I crashed into bed and didn’t move. I couldn’t muster the strength to do anything else.

Due to the severe eye pressure I was suffering from, I went to see my eye doctor. After about two weeks of different eye testing and appointments, he couldn’t find anything wrong. Because of my history with JRA, there are certain eye problems we will always need to be on the lookout for, so he referred me to a Neuro Ophthalmologist (NO) to try and figure out if something was going on due to this. Spokane only has one if these specialist, so I was pretty stoked when I found out my eye doctor had made a personal phone call to get me in the following week. (Side note – I have found during these last two years that sometimes the best way to get medical help isn’t to necessarily find the smartest doctor, but to find the doctor that cares about you enough to know when they need to refer you to someone else).

At the NO, I went through a whole morning of different testing. They were looking for any signs that I might have multiple sclerosis, swelling of the optic nerve, and conditions of that nature. In line with the theme of this entire ordeal, they found nothing wrong. I was diagnosed with New Persistent Daily Headache, the first of many (insert expletive words) conditions that were either bogus or not helpful. This one was SUPER DUPER helpful and let me know I had a headache, that was new, happened every day, and was persistent. But of course, they didn’t know why. I was told to report back to my GP, get a headache medication, and quit worrying about my health.

To Be Continued….

 

 

Part 2 –

Rachel and I have a fun hobby that just recently became way more affordable. We LOVE going to the movies. If you do you not use MOVIEPASS, or have never even heard of it, I cannot recommend this service more highly. It is fantastic. The logistics of it are fairly simple. You pay $10 a month, and you can go to as many movies as you want for free. You sign up online (see link https://www.moviepass.com) and you get a debit card in the mail. Once this arrives, you also download an app on your phone that syncs to it, and PRESTO! You can now go to movies.

There are some rules like

  • you can only go to one movie a day
  • can’t see the same movie twice
  • and you have to be within 100 yards of theater in order to purchase you ticket because they don’t want other people using your card (which makes sense).

Once you select your location, time, and movie on the app, it transfers the exact amount that ticket will cost into your card. Then you walk up to the counter and buy your ticket at the theater with the debit card. This means the theater is getting full prices for the tickets. We have read lots of reviews about it not working, but it hasn’t failed once yet for Rach and me. It works at all theaters that accepts debit cards (occasionally there is a dispute with AMC chains, but they currently all accept MOVIEPASS). One time on Christmas there was so many people using the app that it crashed for about 30 min, but it started working again in time for us to make our movie.

I will admit I go to less movies than I thought I would with this pass. But all it takes is going to one movie a month and you have saved money. It actually is crazy. You are probably wondering (right along with me) how MOVIEPASS could possibly be making money. And the answer is right now they aren’t haha. But business models like these are complicated beasts. Along with marketing your movie going data to 3rd party companies, they also are trying to use their growing client base to convince theater chains to partner with them and give them a piece of the concessions proceeds. I honestly don’t know if this model will last, but regardless Rachel and I are taking full advantage of it. It is especially nice to be able to go see low budget films that we normally wouldn’t even consider due to the cost. And we live about 3 minutes from the theater 😊 so that helps.

We recently saw Paul, Apostle of Christ and I thought it was wonderful. The plot revolves around Paul sitting in prison and dictating his teachings to Luke. I know I know, how good could a movie be about a guy sitting in prison the whole time? But somehow they made this into one of my favorite Christian movies of all time. It does a remarkable job of expressing the importance of fear in God’s power, but also knowing the love and mercy He has and that we must show that even to our worst enemies. 5 star Dude with POTS review!!!

I also saw Game Night with my brother a few weeks ago. I had zero expectations going into it and therefore it beat my expectations 😉 I laughed really hard a few times. I also thought a couple parts lowered my IQ some. But all in all I also recommend this movie if you can swing it. Which you should be able to do when you sign up for MOVIEPASS. 3 star Dude with POTS review!

Disclaimer- I was not paid or given any product/services for free. This review was made purely from my own will.

 

 

Thanks for reading! Be back next week.

Please contact me for any specific topics or reviews you would like from me. Currently my cost for reviewing stuff is FREE. Can’t beat that price.

 

Jarod Gunning – Dude with POTS.

PS. Here are my three Jungle Cats – Joey, Monica, and Pheobe

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