Post #17 – Dysautonomia Awareness Month

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. 

 

Happy October everyone! This is a very big month. For many reasons (my wedding anniversary is this month, don’t you worry Rachel I would never forget!) but one is that it is Dysautonomia Awareness month. I would like to use this blog to spit out some pretty crazy stats about Dysautonomia (the branch of illnesses that POTS falls under). As always, click the follow button to stay in touch! Please feel free to reach to me or comment as well!

Part 1 – Dysautonomia Facts, Stats, and Statements

(As taken from Dysautonomiasupport.org)

What is dysautonomia? A malfunction of the autonomic nervous system which controls heart rate, blood pressure, digestion, breathing, temperature regulation, etc.

I personally have struggles with all of these. The most noticeable being my heart rate increase, thus POTS. It is interesting to me how there are other conditions that fall under the dysautonomia umbrella that aren’t typically thought about. IBS (Irritable bowel syndrome) is more frequently being considered a form of dysautonomia.

The average time to get a dysautonomia diagnosis is currently six years.

This just straight up sucks. It took me about 18 months to get my diagnosis, which apparently is incredibly fast. 6 YEARS IS A LONG TIME! I have a text saved on my phone that I sent my mother-in-law right at the beginning of my health journey where I was venting to her that “the last six weeks have been the longest six weeks of my life”. Six weeks into having POTS symptoms I was having meltdowns. I can’t even imagine going six years. The only way we can help improve this numbers is with awareness and patient advocacy. Not everyone is as OCD about being Dr. Google as I am 😉 which means we need to be on the lookout for these conditions.

There are over 70 million people in the world who live with a form of dysautonomia.

There you have it. That is a lot of people. Most of whom do not have the resources (socially, financially, or physically) to get the help they need. I was blessed with all the resources I needed to seek help and I will forever be grateful to my family, friends, coworkers, and God for that.

There is no cure for dysautonomia.

Well this is just sad. And a little scary. This means that if you are diagnosed with dysautonomia, you will have it for the rest of your life. No it is not contagious, so you can still hang out with me.  Despite this permanent condition, there are lots of potential treatment options available to improve symptoms. The key is figuring out what exactly is wrong and then lots of trial and error. THERE IS HOPE FOR A BETTER LIFE.

A person with dysautonomia might not look sick on the outside but can be very unwell on the inside.

Story of my life. Well at least my POTS life. It doesn’t help that I have a history of overreacting to medical issues (also known as hypochondria or as my friends like to say being a little *insert swear word here*). But in all seriousness, this is one of the aspects that makes dysautonomia such a lonely illness. People around you just can’t seem to understand why you don’t just “get up and feel better”. Just because you see someone out and about it society, does not mean they aren’t dealing with something unimaginably difficult. People with chronic illnesses are a lot tougher than they appear. In fact, they are some of the toughest people I know.

POTS is more common that Multiple Sclerosis and Parkinson’s Disease, but most do not know about it.

This one hits home. I for one did not have the slightest clue what POTS was before I was sick (probably would have told you it was a drug ha ha). Not sure exactly why this is this the case, but I bet it has something to do with most cases of POTS not having a lot of tangible evidence to support the diagnosis. Good news is that just by following my blog you have awareness of POTS and dysautonomia.

25% of people with POTS cannot go to work or attend school. Researchers compare the disability seen in POTS to those with Congestive Heart Failure.

1 in 4. That is a huge number of disabled patients. The thing that really opened my eyes was the percentage of these people that can’t qualify for disability because of the lack of understanding of dysautonomia the public has. I am a part of multiple support groups with adult men my age who cannot work but also are not deemed sick enough to collect any supplements. PLEASE UNDERSTAND, I AM NOT IN FAVOR OF FREEBIES. I KNOW THERE ARE PEOPLE WHO WORK THE SYSTEM AND I DO THINK SOME ASPECTS OF DISABILITY AND WELFARE NEED TO BE CHANGED. But that being said, if a person is truly disabled, as I once came so close to being, I believe they deserve assistance to help them live a worthy life. I honestly don’t know how I was able to keep my job and career through my journey. It was by God’s grace and mercy.

 

For further information on dysautonomia and ways to get involved or help out with Dysautonomia Awareness Month, please visit http://www.dysautonomiasupport.org

 

 

Part 2 – Marathon Update

 

Guys. And Gals. I have bad news. For those of you who have been following the blog, I WILL NOT be running the half marathon with my father in couple weeks anymore. Very sad, sad story. Tragic really. I have injured myself.

A couple weeks ago I did a 9-mile run on a treadmill (which was about 90 min of running for me) and I developed a severe pain in my ankle. It hurt so bad I could hardly walk on it. I took a week off of training and it still did not feel any better. Me being me, I convinced myself that I had a stress fracture and need to seek medical attention (As Rachel will be the first to make sure I mention this, she was convinced it was just a muscle strain and I needed rest).

Despite my brilliant wife telling me what was wrong, I decided to go to urgent care and get an x-ray. This turned into a PRIME EXAMPLE of the cons of getting unneeded scans. The urgent care doctor came back with the results and told me that I had a fracture in my ankle. I was placed in an air-cast, given crutches, and told to see an orthopedic specialist. Me also being me, I made sure Rachel knew just how “hurt” I was. I told her it was broken, and I might need surgery ha ha. She cried. I feel kinda bad about that….

After hobbling around for two days on crutches, I saw the orthopedic specialist who told me that the fracture was “from YEARS ago” and “100% NOT” the source of my pain. Turns out I just had a bad case of tendinitis and he prescribed me 30 days of rest (If I needed that long). I apologized to Rachel and told her she was right 😊 She forgave me.

All that aside, we decided 1 – My body just was not built for running marathons, and 2 – It would be best not to do anything to have my ankle flare up worse. So, I have taken the last few weeks off from running and plan on jogging the 5k race just so I can collect my tshirt. My ankle is doing really well right now thanks for asking. Amazing what thinking through things logically can do ya. In the end I will have to pay a hefty doctors bill, but I think we ALL learned a very valuable lesson. Wife is always right 😉

 

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

 

Thanks for reading! Please contact me for any specific topics, questions you want answered, or reviews you want!

Jarod Gunning – Dude with POTS.

 

P.S. Rachel and I at the river a couple of weeks ago!

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2 thoughts on “Post #17 – Dysautonomia Awareness Month

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