Why I am Barley-free: Part Two

I thought my skin issues were over after the Philippines, but I was wrong. As I said in Part One of this story the bug-bites were only the beginning. I had only connected the borders to the puzzle-it was time to begin to separate the colors,  shapes, and fill in the middle.

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Not long after the summer of 2007, I notice the skin breaking out on my arms, neck, back, chest and sometimes my face. It looked almost like ache but itched like a rash (much like the bug-bites did). It got so red and inflamed I began to wear long sleeves, scarfs, and higher cut tops even in the summer. I feared it was a foreign staff infection similar to what I had in the Philippines because it grew worse in humidity and irritated areas were warm to touch.

I began to inconsistently seek medical help, mostly when I had holidays and summer visits back to California. The doctor that cared for my initial staff infection referred me to a dermatologist. That dermatologist struggled to diagnose the problem working with several theories and  numerous forms of antibiotics, topical steroids, and even cortazol shots. She concluded that it was a manageable but not curable hair follicle irritation. We were not convinced by her diagnosis and eventually decided to seek other help.

jigsaw_puzzle

After I moved home from college I decided it was time to get to the bottom of this issue.  I was tired of hiding. So I decided to see a different dermatologist.

They unfortunately had even more crazy theories. I was told I could have an sun allergy, or even an auto-immune disorder including celiac disease. I and the rest of my family considered the possibility of celiac disease since my cousin and grandmother had recently been diagnosed but all specialist appointments and blood work came back inconclusive or negative.

puzzle

This dermatologist even took several biopsies of the irritated bumps on my shoulders. These biopsys required circular cookie cutter punctures and stitches which I still have scars from.
The Nurse Practitioners who I worked with (I rarely saw the dermatologist himself through all of this) eventually gave up trying to find the root of the problem. They determined that I had an unspecified form of dermatitis and started appeasing the external side-effects. This once again led to a variety of of steroid creams, antibiotics, topical gels, etc.
 These three years were all apart of that process to fill in the middle of the puzzle. Just when I thought I had found the right place for that awkward piece it wouldn’t fit so I tried another, and another. It  was annoying, embarrassing, and frustrating but the worse was still to come.
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(Don’t worry this all has a good ending-stick with me for one more blog and it will all make sense).

Any of you ever had to deal with the run-around from doctors?

Struggled with a mystery diagnosis?

Get anxious having to go back again and again to the same doctor’s office?

3 thoughts on “Why I am Barley-free: Part Two

  1. Oh yes I know the not knowing feeling I dislike it very much. I spent about a month in limbo after I had what I was discharged with back in May of 2012 TIA a Transient Ischemia Attack or mini stroke but I did not have the brain damage of a stroke so basically the doctors had no idea what was wrong with me. I was scared. I had real limited mobility of my left leg and had to do physical therapy and use a cane I know at 23. Thing was I recovered within two weeks incredibly fast. Finally my doctor sent me to the neurologist. I went in and kept saying TIA and she was like why do you keep calling what you had that. I said that is what I was discharged from the hospital with…she said I had had a migraine. Turns out that when a migraine hits hard enough a person can get stroke like symptoms. Crazy right? Cos I had it all the swollen tongue, slurred speech, left side weakness, droppy face…But I am good now…except for my recent sudden Gall bladder removal but I’m good.

    • Wow-we forget the truth is that internal medicine (or even dermatology) if often a process of elimination-these doctors and their staff see so many patience in a day-they are responsible for so much and only have a few minutes to use their knowledge and deductive reasoning to come up with a plan or conclusion-but we have an intuitive understanding of our bodies and can use their right/wrong information to help all of us work together toward a solution. Thanks for sharing !

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