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 chapter 2 of my POTS journey! Thanks for tuning in. Don’t forget to subscribe for email updates when a new post is released! Please reach out to me with feedback or questions! Skip to Part 2 for non-POTS stuff.
Part 1 –
After being diagnosed with New Daily Persistent Headache, I headed back to my GP to look at headache treatment options. I am fortunate to have found a doctor that treats me like a brother. He has had to deal with so much during my case. He hasn’t always had the answers, but he has NEVER given up on me, ALWAYS believed every one of my symptoms, and was HONEST and KIND with me. This guy even gives me a bro hug every time I leave his office. Anyways, to his office I went for a headache treatment plan.
This was hard for me. In my mind I knew something more serious than a headache disorder was going on (not minimizing headache disorders, just knew I needed a different treatment). But I had to take a long solid look at myself and wonder if maybe I was being weak. Maybe this was just a bad headache. I went to my doctor, discussed my diagnoses, and was recommended a strong headache medication. Due to my medical anxiety, I am impatient when it comes to treatments. I want instant relief because I get afraid I will never be healthy again. So I made a deal with my family and Rachel. I would try the headache medication for three weeks, and if I didn’t get relief, we would go back.
In order to agree to this, I had an MRI done on my brain to make sure I didn’t have a tumor or something (it was normal). I developed what might have been the worst case of Dr. Google syndrome ever known. I am talking unimaginable amounts of time on Google. I spent over 3 to 4 hours a day during the week, and 5 to 6 hours a day on the weekend Google researching my symptoms and trying to find out what was wrong with me. I had zero life. On top of all of this, I was getting new symptoms. Ear ringing, dry eyes, dark rings under my eyes (my mom even commented one time asking why I had a black eye), worsening headache ESPECIALLY when standing up, and losing the energy to stand.
I also was developing depression and SEVERE anxiety. I had my first panic attack at work. I was in a meeting and all I could think about was why did my head hurt so bad. I honestly can’t tell you a thing from the meeting, but my heart started pounding and I started feeling like I couldn’t breathe. I left the meeting, got in my car, and drove to my apartment (I lived 5 min away). I crashed down on my bed and blacked out. I woke up about 90 min later feeling paralyzed. I eventually mustered up the strength to get myself back into my car and back to work, but it would be an understatement to say I was worthless the rest of the day. Thank you to my former employer for not firing me. My boss was super understanding of the mental aspects of what I was going through and supported me through the whole process, as did my coworkers.
Panic attacks became a regular for me. Maybe two or three severe ones a week, and constant minor ones. I would wake up and not know how I was going to get out of bed. Only by the grace of God did I not lose my job or more important my now wife.
SIDE NOTE – this story is about what I went through medically, but I just want to call out the fact that YES, I was dating Rachel through all of this. YES, we were engaged through all of this. YES, she stood by my side every single second of this. YES, she was frustrated with me (she should probably start a blog about being with me haha). YES, we were scared we wouldn’t be able to get married. YES, our relationship struggled as bad as could be. YES, there were lots of tears. YES, it was embarrassing to be the sick guy. YES, I felt like I was letting Rachel down. YES, I am one lucky man to have her in my life. Someday I want to write a post about having support during a chronic illness.
During this time, Rachel and I were finding the strength to continue with a Christian life group we had also joined back in the fall (it was now early April 2016). I had always considered myself strong in my faith, but I was basically only allowing God into my life when it was convenient for me. During this life group, I found myself opening up to others and being honest. Rachel and I relied heavily on the weekly meetings to grow in our relationship with each other AND with Christ. I was sick, but it gave us something we could do together that allowed us to have hope. For the first time in our relationship, we prayed together. We read the Bible together. Having other people pray for your healing was comforting in a way words can’t do justice. I felt so alone, but at the same time felt so loved. It is important to me to include the impact Jesus had on this journey as it is without a doubt the most important piece of my ultimate recovery.
As I continued with this headache medication trial, I didn’t do things standing up very often. But when I did I started to notice my heart was beating unbelievably fast. I could see my pulse beating in my neck. It scared me and I knew this was not normal, but anyone I showed it to seemed to think it was because I was stressed. I WAS stressed so I was forced to believe they were right. Up until this point I had no physical proof that I was sick. My word was the only thing people could form opinions on so naturally it was becoming “clearer and clearer” that my problems were all mental (and who was going to believe Dr. Google anyways).
From time to time I could muster up the strength to go on a walk with Rachel. It was on one of these walks that we finally had a breakthrough in the “evidence that Jarod was sick” category. We walked MAYBE a mile and a half, and when we got back to the apartment I just didn’t feel right. I checked my pulse and of course *thump thump thump thump thump thump* heart was beating ridiculously fast. I told Rachel, who is a nurse, and she checked my pulse herself. 145 bpm. She agreed that was a little high for a casual short walk. We went inside and I told her how it wasn’t getting that high when I was sitting. She measured my pulse laying down, sitting, and standing. 80 something laying down. 80 something sitting. 140 standing. FINALLY. We had something tangible we could take to the doctor to check. It seems so obvious now, I HAD POTS! But I have never heard of POTS (and neither had my doctor) so that wasn’t on my radar. I thought I had a life threating heart condition. Instead of the answer, this only proved to be the start of a crazy a** medical mystery.
To be Continued…..
Part 2 – Big Brother Big Sister
Let me tell you about a neat program that is doing some really great things for our community. Big Brother Big Sister is a mentor program that matches adults with kids aged 7 to 18 that need good influences in their life. You become an older “sibling” to your match and the goal is to develop a friendship with your “little” that will carry on with them throughout their youth.
I joined BBBS as a “Big” back in September 2017. My health had finally reached a point where I was ready to give back and I knew I wanted to be a positive influence on somebody. Rach and I weren’t/aren’t ready to have kids of our own quite yet, so through a recommendation from a friend, I decided this was the perfect program for me to get involved with.
In order to be a Big in the program, you have to go through a pretty extensive background check, interview process, and fill out a ton of paperwork. They make sure you are not a creeper, are not dangerous, or will be a bad influence. This is important because right from the start you are trusted with someone else’s child. All in all, it took about two weeks to become a Big. I had to meet at the headquarters in Spokane twice and the director does a home visit to make sure your home is up to program standards (aka no beer can towers on your living room table, knives hanging from the ceiling, etc). After you are approved, you get to go through the files of potential matches that the director creates for you based on your interests, background, age, location, and the likes. They make sure that you are matched with a Little that sets you both up for success.
Right from the start my Little and I have gotten along great. The time commitment isn’t too much and you have the freedom to develop your friendship however you see fit. They encourage you to meet at least two times a month for two hours each time (and you can increase that up to four times a month for four hours each time if desired). The guidelines are to make sure you don’t get overwhelmed with the match, but also are devoting the time necessary to build that strong bond. They also have a match support coordinator who checks in with you from time to time to make sure you are following the policies and to offer advice if you are having any issues.
My Little and I do all sorts of cool things. We both LOVE basketball so we play a ton of hoops. Someday if he earns an athletic scholarship he owes it all to me for training him. The BBBS program offers you lots of sweet deal on activities too. We got a free membership to the YMCA so we go there frequently. We also have gotten a lot of coupons for free meals at fast food places. I should probably have him eating more carrots and celery, but we love Taco Del Mar 😊. You are allowed to spend money on food and experiences, but the goal is to keep costs to minimum. Free activities are STRONGLY encouraged. They have scholarships you can apply for as well that help you pay for a few things.
BBBS is always looking for Bigs. They have an overwhelming amount of unmatched Littles that could really use a mentor. They have an extra hard time getting males to sign up as Bigs, so the wait time can be months and months before a kid gets a match. That just breaks my heart thinking about a kid who isn’t being “picked” to be a match. If you can spare four hours a month and want to make a difference, get involved with Big Brother Big Sister. Here is the link!
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, questions you want answered, or reviews you want!
Jarod Gunning – Dude with POTS.
PS. This is the motto of a someone with POTS 😉