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.
Welcome to the 12th and final chapter of the start to my POTS journey. Thank you so much for following along so far! I really hope this blog has been beneficial to someone out there, or at the very least just a little entertaining 😊. Please share and follow! Also there won’t be a part 2 this week due to the length of this post. I will start that up again next week.
Part 1 –
I had reached the part in my journey where I had finally found the doctor who knew how to help me. I got home from this Seattle trip so excited. For the first time in as long as I could remember I had hope. Unfortunately, POTS is not a quick syndrome that just magically gets better overnight with few easy fixes. I still had a long, long, LONG road ahead of me. I think the best way to tell the last part of this story is by the month things occurred in.
Jan 2017: I finally saw the POTS specialist at UW and got a treatment plan. Even though I had a plan, I still had every symptom. My 24/7 headache continued, and my stomach pain especially was still super severe. I could not seem to accept the fact that it was being cause by POTS so I continued to have follow up doctor appointments for this stomach pain. I also was dealing with several panic attacks a week.
Non-medically, I decided in January to take one of the most important steps towards my recovery AND as a person in general. There is a 10-week discipleship course that our church offers called ROOTED that we had been hearing some powerful things about. Rachel and I had been attending church regularly but were “stuck” in our journey as Christian’s sometimes describe it. We were not growing in our relationship with God and to be brutally honest Rachel and I were struggling to maintain a healthy relationship with each other due to my medical situation. *Not because I was sick, but because my mental health was so incredibly weak that I was not being the husband that I promised Rachel I would be when we took our vows on our wedding day*. We also were struggling to find friends. As a young married couple who couldn’t go out doing many fun things because of my POTS, we spent most of our nights alone in our apartment usually playing a game called “Rachel sits and listens to Jarod vent about how he is probably dying from whatever is going on in his body”. We had heard ROOTED was a fantastic way to meet and grow close with a small group of people.
Anyways, we had talked about doing ROOTED for a while but kept telling ourselves that is was better to wait until I was healthy so we could give it 100% effort. After months and months of putting off this course, we decided we couldn’t expect that I would be recovering any time soon (or at all) and we needed to just jump in to this class despite the challenges we were dealing with. Although it was incredibly scary and embarrassing (doing anything as the sick guy is embarrassing), we signed up for a ROOTED course that began in Mid-January.
End of January Health Rating – 25%
Feb 2017– February 2017 turned out to be a big month for me. For starters, I started a new job. I was given an incredible opportunity to take a position as an analyst for a company in Spokane that I had wanted to work for since I was in college. It was not an easy choice for me to make though, as I was still pretty sick and had no idea if I would be able to handle the job demands. After carefully consideration, prayer, and internal processing, Rachel and I agreed that I needed to take this job offer. Despite a great relationship with my employer at the time, I couldn’t let this opportunity to do what I went to school for pass before me. I was terrified at how they would handle my health situation and if it would work out.
I began the exercise program that my POTS specialist had given me and it was quite the challenge. It started as just walking for a few minutes each day and progressing amounts of recumbent exercises (rowing machine, biking, etc). At first even these small workout sessions of 5 to 10 minutes were excruciating. I would have to pass out on the couch for a while after walking for 2 minutes and riding a stationary bike for 3 min. But I continued to push myself and very, very slowly I saw improvements in my stamina and ability to stay upright. *Side note – it was super awkward to walk into our small apartment gym and be in there for 5 min and then leave. People had to think I was such a loser haha*
Finally, I also took some steps in the improvement of my mental health. Through the recommendation of some friends we were getting to know at ROOTED, I signed up for a session of hypnosis to try and control some of my anxiety and chronic pain. Admittedly, I thought this was the dumbest idea I had ever heard and thought there was no way in HELL I was going to be hypnotized and/or get any help from this. The actual improvements I saw from this are (and will forever) be up for debate, but I ended up continuing with this for about 6 sessions and started to really enjoy it. To this day I can’t confirm that what happened to me was an actual state of hypnosis, but I did have some of the BEST naps I have ever had in my life haha. It was like all my stresses and worries were gone. I also was finally placed on an anti-depressant that I absolutely noticed improved my anxiety. February was the last time I had a panic attack.
End of February Health Rating – 40%
Mar 2017– By March I was working my stamina up to actually being able to do a few recreational activities. I went on my first jog in months. I went on a hike with Rachel. Things seemed to be improving. My headaches were slowly starting to damper.
Despite my improvements, I was still dealing with this severe stomach pain. I felt (irrationally of course) like there were still a few more tests that needed to be completed before we could absolutely be sure that POTS was causing my stomach pain. My mom and traveled to my GI specialist in Seattle (yup the good ole Seattle trek again), where they agreed to do the last testing I wanted done. Ultimately everyone involved knew I was borderline crazy, but they went through with it and did another upper scope on me with a biopsy, and also completed an acid reflux test. SURPRISE!!!!!! They found nothing. It was 100% for certain that my POTS was driving faulty nerves and pain in my upper stomach. There is a happy ending to this part, and that was another anti-depressant my GI specialist placed me on that at low doses is shown to help with nerve pain. I got on this and slowly began to see improvements. It is also probably important to admit that knowing that nothing was killing me in my stomach helped ease my stress and anxiety, which in turn improved my stomach pain.
By the end of March, I actually even played in a pickup basketball game at a local gym. It was incredible. I basically died on my bed when I got home, and my heart rate didn’t return to normal levels until the next day, but I DID IT. I competed again.
End of March Health Rating – 65%
April 2017 – April was another huge month for me. With each day I was starting to feel better and better. Rachel and I finished our ROOTED class and had developed much stronger relationships with Christ. We had a group of friends that we could count on, were learning how to deal with stress and anxiety better, and there was no denying how incredibly powerful prayer had been in restoring part of my health back. Rachel and I decided to get baptized on Easter Sunday and it was so special to us.
I also began my weight training program. If I showed you my lifting journal from my first couple of weeks, you would probably have zero respect for me…. I took BABY steps to say the least. I had never been much of weight lifter growing up (didn’t want to throw off my basketball jumper), so it was important for me to learn proper technique first. I also had learned to deal with my condition and not be embarrassed in public by my inabilities to do certain things. I learned to go into the gym and lift whatever weight was appropriate given that I had POTS, even if no one else knew and I looked pathetic.
Weight training turned out to be a HUGE boost in my recovery. The more muscle mass I developed, the more energy and strength I had to go about my daily activities. By the end of April I was playing in competitive full court 5 on 5 basketball games. My stomach pain was also starting to be very minimal most of the time.
End of April Health Rating – 80%
May 2017 – I like to call May 2017 the first “normal” month I had since getting sick back in Jan 2016. Rachel and I were having legitimate married people conversations, not just ones about my health. We talked about buying a house and started doing major research into that. I continued to train and push myself to get into my pre-POTS shape. I still had symptoms from time to time, but my mental health was so much stronger and allowed me to not panic and take things one day at a time. I discovered a new love for life and wanted to say YES to everything. Rachel and I could finally go do fun things together. I also make sure to give all the credit to Jesus. It was such a long road, but I learned so much about myself that I needed to fix.
End of May Health Rating – 85%
June 2017 – June was the month I finally felt like I was back to being Jarod. I was working out 3-4 times a week, going to the river a lot, was contributing at my work, and most importantly was being able to be the husband Rachel deserved.
At the end of June, I played in Hoopfest in 90+ degree weather all weekend, and even had a few beers. JAROD WAS BACKKKK.
End of June Health Rating – 90%
Today – Today I hover right around 90-95% health. It has been a year since I have recovered, and I continue to stay high on life. My stomach pain is still there from time to time, but I have learned to deal with it and control it better. My heart rate is still crazy sometimes. A couple of weeks ago I actually passed out during a workout, but thankfully I regained consciousness once I was on the ground and my blood pressure normalized. I still have headaches when I push myself too hard, but that is nothing I can’t handle.
Every six months I travel to Seattle to see my amazing POTS specialist. Our current prognosis is that I probably have this syndrome due to an underlying autoimmune condition. They are developing a test to check for the antibodies for this special POTS autoimmune disease, but it is probably a year or two away from hitting the market. Even if they do discover the real cause of my POTS, treating it would be a challenge. Immune suppressers can be dangerous, so you have to weigh the risks and decide if they are worth it. Right now we are treating my symptoms and doing a pretty darn good job at it, so I am not sure what route I will want to go if they ever figure more out about this POTS thing.
During my last visit in April, by doctor told me “I am 100% confident that by the time our journey together is over, you will be completely healed”. THANK YOU JESUS.
Disclaimer- I was not paid or given any product/services for free. This review was made purely from my own will.
Thanks for reading! Starting next week I will cover more specific health topics and interesting aspects of living with POTS.
Please contact me for any specific topics, questions you want answered, or reviews you want!
Jarod Gunning – Dude with POTS.