Living with a Rare Genetic Disorder Part 2

mermaidbrunetteHuge reality of living with a rare genetic disorder, is that you get to know a lot of doctors. I’m enclosing the list I have to keep up with regularly. I’m surprised Barry and I get anywhere when we have a scheduled appointments.

                 MM900283642Primary Care Physcian









             sickbugs Endocrinologist

              gofishy2General Surgeon


                purplebutterflyGynecologist-Breast Health Specialist 



              0511-1006-2819-1529_Toothache_Cartoon_Character_clipart_image Oral Surgeon



              MP900433140  Cardiologist

That is only 19, but at my appointment this week, it was suggested that I locate a Nephrologist and Dermatologist for routine visits. That will put my court up to 22, I believe. These are just the doctors I see, I did not include Barry and Mom’s doctor’s that are part of our monthly routine.

Between church and visiting doctors, no wonder I’m tired. This is the first time I have actually written all of them down. Honestly, I am a bit overwhelmed.

With Cowden’s Syndrome, the important thing to remember is to closely monitor you health and keep up with yearly test as ordered. Missing one appointment  could mean a major health issue, the life or death kind.

I‘m not ready for such, but if the good Lord calls me home, I’ll be in his hands. My life is in his hands always. I’m learning not to question what God’s plan is for me. Just to put my trust in Him and things will be okay. I’m getting there, Lord….working on the fear of the unknown at the moment. It can get scarey!

6 thoughts on “Living with a Rare Genetic Disorder Part 2

  1. Jill, I didn’t “like” this post because I like that you have this disorder or all these doctors, but because “likes” are cheerful. xo

    • Honestly, Luanne, I would not have been able to like this one either. I was shocked there were actually that many, I never counted before. But I appreciate your honesty and thank you!

    • I have one Neurologist that manages meds, dystonia, other movememt issues that have come up and some testing; the neuro-oncologist monitors my other symptoms from Cowden’s to advise us what to do as thing arise.

      I was sent to this guy in case some of the neurological symptoms that were popping up may have a cancer or something else somewhere in my body related to Cowdens. He is the only local Cowden’s Specialist. My neurosurgeon is still seeing me yearly and orders the yearly MRI……Jill

  2. Remember, FEAR is False Evidence Appearing Real. God makes no mistakes and faith presumes comfort in His wisdom. So be confident my friend and find comfort in the destiny God will unvail before you.


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