My Medical Mystery Tour

MY MEDICAL MYSTERY TOUR

I wasn’t sure whether I wanted to write this post or not. But since I have been absent from the blog for a few weeks and I have been sharing snippets on Facebook, I thought it was time to update people. For this reason : my mother in law recently asked on Facebook why people share such personal things there and I responded that it is an easy way to tell a large group of people about something quickly. It seems silly not to include this idea on my blog.

Also, journaling is a a great way to both extract my feelings on the subject and keep track of what is happening. I very rarely get personal on this blog, but I think it’s time for me to.


Since I attended TypeA back in September, I have been feeling a bit off. While I was there I had my period and had forgotten cloth pads which led to a flare up of my vulvardynia. Vulvardynia is a flare up of tissue around the vulva. Once of the causes is a genetic predisposition to inflammation which is the most likely in my case. Another cause is therorized to be an autoimmune disorder similar to lupus erythematosus or to eczema or to lichen sclerosus. Which may also be the case since my flare ups are accompanied by chills, fevers, and body aches. My adenomyosis usually flares up as well. There is no way to definitely decide the cause.

All of this is a pain in the ass, or more accurately the front bottom as the British say. But I have learned to live with it. Anti-anxiety medicine deadens the nerve area and I sometime up the pain medicine once a month.

However, as I said, I really have never come out of my last flare up. I have been sick several times in the past two months. And even when I am not sick I have a dry cough that often wakes me up at night. I’ve always had issues with breathing and decreased lung activity. But now I sometimes can not even get through reading a long story to my kids at night without being short of breath. I am tired all of the time. And I have gained ten pounds in two months.

When I went to my primary physician, he didn’t feel comfortable treating me and sent me to see a pulmonologist. Since then I have been on a tour of tests and specialists.

So far I have had done:
-Six Minute Walk Test – no significant decrease in oxygen levels
-EKG – normal
-Echo Cardiogram – one valve pumping less than the others but no cause for concern
-PFT – low end of normal, no change after a breathing treatment, 30% decrease since last year (which my doctor attributed to weight gain)

Still to come:
-CT scan of my lungs
-blood workup

I am being seen at a university hospital which means I am seen by a resident, followed by an attending. This is not working to my favor as I am often told one thing by the resident and then another by the attending. The attending also didn’t remember me seeing me before, even though it had been less than a week (I don’t expect him to remember me by sight but that means he didn’t even look at my file before coming in the room.) I am thinking I should see someone else but am going to get the CT scan done first since it is already scheduled.

Woowee, this has gotten long. There is a lot more I want to write but I think I will put that in another post. For now, if you feel like playing armchair doctor here are my symptoms and possible contributors…

Symptoms:
-shortness of breath, not due to exertion
-chest pain
-extreme fatigue
-frequent stomach issues
-dry cough

Conditions
-sleep apnea
-adenomyosis/vulvardynia

A note, I have autoimmune issues on both sides of my family. No history of heart disease or lung cancer.

Comments

  1. I h

    • Sorry. My tablet freaked out on me & them wouldn’t let me delete.

      I have vulvodynia as well and know just how big a pain in the you know what it is. I have resorted to sitting on ice packs on numerous occasions because being numb was better than being in pain. Often times my vulvodynia flares would coincide with my fibromyalgia flares (which is also nerve related), especially if I was extremely fatigued or sick. It is AWFUL!

      I have quite a handful of other diagnosises (endometriosis, celiac disease, chronic fatigue) which are considered by some to be all autoimmune related. We are still trying to get a handle on all my symptoms and we all (meaning myself and my panel of five doctors) wonder if there is a larger diagnosis that we are missing.

      The point of all this is to say that I can sympathize with what you are going through and known how frustrating it can be to feel so bad yet have no answers or relief. If you ever need to chat or vent, feel free to contact me anytime! I’ve been on this road for over ten years now and would love to be able to support and encourage you any way I can! My email is anewkindofnormal@gmail.com!

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