Post #1 – There is hope!

Hello everyone! Thanks for following my blog and I hope it provides you with some benefit whether that be POTS related or just comical relief.

Before I begin, I want to call out a couple things!

1 – Blogging is new for me and I am learning as I go. Let’s hope I figure it out fast! I am aiming to make this a bi-weekly thing (every other week).

2 – I set up a page called “Treatments” up at the top where I will attach files that go further into detail about my specific treatments (what has and hasn’t worked). This is blank right now but I will start adding stuff as we go. The goal is to keep the actual blog posts from being too dull/dense.

3 – My posts will usually consist of two parts. Part 1 will be directly related to a POTS topic, or some other health issue I think is important. Part 2 will be directed more at interesting or neat things occurring in my life. This is because I also think it is important to make sure POTS does not define who I am.

4 – The reason for this blog is two-fold. The first reason is to provide any help or resource to people out there looking for information on Postural Orthostatic Tachycardia Syndrome. The second reason is because sharing your story is therapeutic. I have learned along the way the more open I am with my struggles (and victories), the better shape my mental health is. Which is a battle I do fight.

5 – I am a follower of Christ, and therefore my posts will have Christian views and aspects. Reader beware!

 

Part 1 –

I titled this first post “There is Hope” because that is actually what I want to share. THERE IS HOPE. No matter what situation you might find yourself in, there is nothing that God cannot fix or change. My story with POTS is a long one, but also typical for those who know others with this syndrome. One day I was healthy as could be and on top of the world. Then life said “Nope”.

Postural Orthostatic Tachycardia Syndrome is exactly what you would expect from the name. My heart rate gets really fast when I am upright (orthostatic). That in itself is not too bad, but there are other symptoms as well. This is why it is called a syndrome. Most people have never heard of this syndrome (at least I hadn’t before I actually developed it), but it is a type of autonomic dysregulation that affects many systems in the body. The systems in my body that are supposed to work on their own do not work appropriately. The autonomic nervous system controls basically our whole body. Heart rate, blood pressure, digestion, glands like saliva and sweat, everything most people don’t have to worry about since your body is supposed to handle it on its own.

This dysregulation in my autonomic nervous system causes a LOT of symptoms. Some things work too fast, some too slow, some work fine most the time, some almost never work fine. I have an increased heart rate while standing, severe dry eyes, dry mouth, muscle pain, fatigue, increased gut motility etc. My worst, or most annoying symptoms though are headaches and nerve pain in my stomach. We know that my headaches are caused from low blood pressure when standing, and the nerve pain in the stomach is due to a hypersensitivity to pain from the faulty nerves receptors in my body. Fortunately we have found treatments for these that help my quality of life. I will make a long story short by saying we still do not know for sure what the cause of my POTS is. The medical community is getting closer to finding answers out, but I will save that for another post. But at this point we are not treating the CAUSE of my POTS, only managing the symptoms (in my case really really well).

The closest thing I can describe this condition to is like having the flu that never goes away. With my treatments and lifestyle changes, I have been able to get back a very great quality of life with almost no restrictions. I have to be careful, but I am so happy to share that THERE IS HOPE.

 

Part 2 –

I am about 10 months in to being a first time home owner! Rachel and I bought our first home back in June. It was a brand new build because we were looking for something pretty turnkey. Neither of us were/are very handy, so we were not particularly fond of getting a fixer upper. We have learned so much about the ins and outs of real estate, owning a home, and the challenges that come with that. It is amazing how much goes wrong with a brand new house. Sometimes this place seems like a money pit haha. I have learned a few lessons in my first 10 months of owning this house.

You never know what you are looking for in a house until you actually own one and realize what it’s missing. AKA where is my mini hoop supposed to go in this place???

Don’t be in a rush to buy. Rach and I don’t regret AT ALL about buying this home. But we also were super antsy to buy, and we only looked at 10 houses. At the time that seemed like a ton, and I was getting tired of looking. I was basically saying “this is the one” at every house by that point. Soon as we closed on this house, houses that looked like better deals popped up. I think everything happens for a reason, but I wish we would have waited until we were 100% convinced this was the one. Related note, I didn’t even see the house in person before we put in an offer ha ha. It was all Rachel! Happy wife happy life.

When you own your own home instead of just living in your parents place, suddenly all of the hand marks on the walls and shoe marks on the carpet bother the crap out of me. I need to have kids ASAP to clean up the messes I make.

You have to find that perfect balance of taking good care of your things, but not being too materialistic. Sometimes it is worth the spills on the carpet in order to host your friends over. And having three cats will destroy your couch.

You find very quickly a house seems small. I thought this place was a mansion after living in an apartment, but my greed takes over sometimes and I want more. More square footage. Can I buy the neighbors plot? I need a bigger yard. I am working in this, and finding that we are living within our means. Cleaning the whole house in a couple hours is nice too.

Put 20% down if you can swing it. Mortgage insurance is actually the worst thing ever invented. You are literally flushing money down the toilet. I hate it worse than my student loan debt.

Thanks for reading! Be back in a couple weeks with more of my background.

Jarod – Dude with POTS.

Me and Rach in front of our first house!

House

5 thoughts on “Post #1 – There is hope!

  1. Hi Jarod, enjoyed your first blog. Just wanted to make sure you knew that congress extended the ability to write off your PMI in February (after tax forms were required to be sent out in January). Good luck with the house!
    Chris

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    1. Thanks Chris! Yes I am aware of this new extension. It saved us a couple hundred 🙂 I still hate PMI lol and thanks man hopefully I don’t burn it down cooking or something 🙂

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  2. Thank you so much for sharing, Jarod. Having had a severe form of POTS for 8 years now, and having been told by Dr’s Grubb/Karabin (for those who don’t know, these are physicians at the University of Toledo who are nationally renowned for their expertise in POTS) that I have the autoimmune form and will likely never fully recover, it greatly encourages me to hear success stories like yours. I’m so happy that your symptoms are under such good control. I will add that through the past 8 years God has given me the perspective that even if healing doesn’t come, there is always hope when we know Christ. For the child of God, the best is always yet to come in eternity. Lord bless, bro! (P.S. I was blessed to not have my digestive system affected more than it has been in the past few years, but that has reared its ugly head for me now. Intense abdominal pain, and digestion is not cooperating. GI at Mayo confirmed last week it’s POTS related. We must persevere and endure in the race to which our Lord has called us, for His glory and the sake of His great name!

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    1. Matt thank you for the update! Praying for you still bro. You continue to be a great example for me!! I hear there are some advances being made in the autoimmune versions of this, so hopefully something comes out soon! It is about time you get some relief. Doctor told me last appointment he is applying for a grant to try and get his POTS patients tested for the antibodies to see if mine is autoimmune too. Glad to hear from you my brother! Yes glory to HIS name!

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      1. Thanks Jarod! Yes, last summer at my appointment in Toledo, Dr. Karabin expressed hope that when I return this year, Dr. Grubb could be prescribing autoimmune medication. I’m so hoping that is the case! But trying not to get my hopes up too much in case that doesn’t transpire. Our Lord’s timing is perfect. I hope your doctor gets that grant!

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