Kelly’s Medical Adventure

Hi everyone! Thanks for visiting my blog. Many of you know my story in parts or whole, over years or just in a few days. I created this blog out of your requests & my benefit of putting words or pictures to my experience. As you read, explore & think, feel free to ask questions, comment – complaints or compliments, or just move along.

So – what exactly is the deal with me?

From the beginning, I have a genetic disease – Ehlers Danlos Syndrome (EDS), hypermobility type specifically (hEDS) – which affects my body’s creation of collagen. Collagen is like the glue that holds the body together; it’s everywhere, in bones, skin, ligaments, gut, even the eyes & ears. In my case, hEDS has caused issues mostly in my joints (they are loose, injure / slip out of place easily, and don’t heal well) and my gut (poor motility, leaky). hEDS showed up in little ways for my entire life, from struggling to hold a pencil as a little kiddo to tearing a key ligament in my thumb grinding medications in Fall 2018. It was not officially diagnosed until June 2017 (33 years old) – prior to this my symptoms / complaints were ignored, written off or blamed on hypochondria. Sadly, this pattern is fairly common with EDS; there is ongoing advocacy for recognition.

Alongside the hEDS, I have dysautonomia – dysfunction of the autonomic nervous system (ANS). The ANS controls all those things we don’t have to think about – like heart rate (HR), blood pressure (BP), temperature, digestion, sweating, etc. In my case, I developed difficulty with regulating heart rate and blood pressure in response to being upright vs. laying down. The ANS is supposed to adjust when we get up to ensure the entire body, especially the brain, gets good blood flow – without it, we get lightheaded, maybe pass out. I developed this in late middle school. It’s actually surprising it was diagnosed correctly back then. Over time, I learned to adjust but more recently my ANS has been under more attack by some autoimmune diseases. So, I have more issues with regulation of these functions.

To round out the pathophysiology story, I have developed a few autoimmune diseases (when the body’s immune system accidentally attacks itself) over the past several years. I have Hashimoto’s hypothyroid, Celiac disease, and antiphospholipid antibody syndrome (APS). These antiphospholipid antibodies have attacked the ANS and well as pain fibers and increases my risk for clots forming. There is a lot of brain fog (mental slowing) that comes with dysautonomia (the brain needs blood & oxygen) and APS (Hashimoto’s too, I’ve heard). These autoimmune attacks have caused various damage over the years. Unfortunately, nerve damage (especially to the ANS) does not recover well.

Symptoms: Due to the gut dysmotility, I cannot tolerate sufficient eating or drinking or (at this time) tube feeds. I “eat” my calories in the form of a bag of parenteral (outside the gut or intravenous) nutrition which contains fats, proteins, carbohydrates, vitamins, minerals and electrolytes. It is closely monitored & adjusted through pharmacy experts. I am also working on tolerating some “trickle feeds” into my J tube to keep my intestines alive on the inside. Due to the dysautonomia, I have a lot of lightheadedness, near fainting, rapid heart rate as well as some temperature instability. Nerve damage, dysmotility and joint instability all contribute to pain in most parts of my body. & now my bladder for which I am needing a catheter (from the EDS & ANS nerve damage). When we put it all together with multiple hospitalizations, illness, etc., my body is pretty beat up, weak and fatigues easily.

Does that all make sense? Please feel free to ask questions. If I am not comfortable answering or do not know the answer, I’ll let you know.

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18 thoughts on “Kelly’s Medical Adventure

  1. I pray for you often and am saddened to follow your course. Having worked so hard to get through med school, residency and fellowship…knowing more details, I am even more amazed you could do it. What a resilient person you are. I sure miss you in the mission field. I know you must struggle with so many things we all take for granted, but I learned so much from your faith, I can only hope you are at peace with the valley through which God is leading you.

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  2. Im so sorry to read about All you have had yo deal with and fir so long. I hear of you often through your loving mom. I will keep him in my ongoing prayers ! Thanks so much for actually spelling this out for us so we better understand the battle you are in during.

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  3. My heart goes out to you. My son died of ALS and although not the same, still many of the same issues you are facing…….I will keep you in my prayers for healing and beating these things……you have strong parents and I know are there for you…….!!

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  4. Jelly, I am one of your parents’ neighbors and an RN. I recently moved from Texas where I have a friend who’s 10 year old daughter was diagnosed with Ehlers Danlos last year. She is currently seeing specialists to try to diagnose additional symptoms she is having. I admire you for sharing more about this difficult to understand disease. I pray for you and my friend’s little girl frequently. 🙏🏼

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    1. Thank you for the prayers! It is a frustrating disease. I’m really happy that this child can have a diagnosis at an earlier age to avoid some of the complications that occur from missed / ignored pain & injuries. If the family ever wants to connect, I’m happy to do so.

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  5. Hi kelly. I am one of your friends who has heard your story in bits and pieces and I appreciate the way you summarized your medical history in a way that was understandable. You amaze me in your faith and strength and your ability to use your life story to help others understand chronic pain. You are loved by many and God is with you always.

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  6. Kelly, I know your Mom and Dad and have heard bits of your journey for years. Thank you for sharing your journey with us as I had no idea it was so involved. I know you are a strong soul and have faith in the Lord. Your parents, too, are strong and love you so much.

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  7. Happy to contribute to Go Fund Me! So proud of your sharing with all of us! God has you in his hands as we all share his love for you and hope he can keep giving you the strength you need to go on! Love you sweet girl! Love you!!

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  8. I love your strength and bravery in sharing your story. So proud of you and your love of the Lord. How blessed and humbling to be your Mom and share this difficult journey with you.

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  9. Happy to find your post on this site tonight. Was a major “wow” learning more about your situation! Got some feedback after the reunion & the ones you shared with were impressed with your efforts & achievements. Knowing more about your health problems, I’m doubly impressed. You’ve got a whole family rooting for you! Much love!!

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  10. Thanks for sharing Kelly. As a fellow work from home/live alone person who is also social and extroverted, I get the isolation and working to fight that. Know that your friends totally get your “inconsistency” in being able to hang out, we just love the Kelly time we get!

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