In some of my other posts, I mention having had health issues most of my life. Let me preface by saying that I never had to endure anything as horrible as childhood cancer or some life threatening or debilitating disease as a child. I did, however, have health conditions that, in their time, were not as well-known as they are now.
I also want to acknowledge that standards of care are vastly changed since my childhood, but it will explain where science and medicine were at that time and how far we’ve come.
Medical Mystery #1
As a child, I had eczema that only covered the left side of my body, (for real!)- – rashes that only affected certain parts of my body; 5-6 operations to have tubes in my ears starting when I was 18 months old, and horrible sinus allergies. Nothing crazy but enough that my mom had to keep an eye on me more often than not.
Medical Mystery #2
Fast forward a few years, maybe late elementary school, early middle school. I get what first appears to be pink eye… no big deal, right?
Wrong!
3 doctors and 1 week in the hospital later to determine that I didn’t have pink eye, but an abscess had developed in my eyelid and was pushing my eye into my head, causing an increase of pressure in my eye and head. Who knows, right?
Medical Mystery #3
Few months goes by… I must have gotten sick and required an antibiotic. I had told my mom that I felt like I had something in my throat for days but nothing was there. A few days later, a friend and I are in our bathing suits, getting ready to go to my grandmother’s house to go swimming when she asks what’s on my stomach. I look down and there are these huge, raised sections on my skin.. (FYI… I had one of those really cool bathing suits back then that had 2 holes on each side of the stomach… they have since gone out of fashion and are making a slow come back, just in case you weren’t interested, lol). One ER visit and a hospital admission later… anaphylactic reaction to an antibiotic. One week stay with the world’s most misleading medicine in the world. It smelled like white chocolate.. only it didn’t taste like white chocolate… the hospital was close to the high school, so my brother came by on his lunch to drop off Jolly Ranchers to my nurses to bribe me into taking my medicine. It worked. LOL
Medical Mystery #4
I’m now in 5th grade, I start telling my mom that I have horrible headaches and I am so tired all the time. I can’t keep my eyes open for more than an hour at a time. She takes me to the doctors again… they say its nothing and send us home. This goes on for almost a month… a FULL month! After 3 visits and my mother laying down the law, the doctor finally decides to take a blood test only to figure out that I have mono. (I’m about 9-10 years old. Doctor’s excuse was that he didn’t think a blood test was necessary…) Today, this would have been figured out within a few days, but again this is the early 90’s. Science hadn’t caught up yet. It’s highly contagious to people who live with. I got my own set of dishes and utensils that no one else used, washed with bleach when done. I spent the next 3 months sleeping 18-20 hours a day!!
Medical Mystery #5
Now it’s 6th grade… and I get it again, but this time I am out sick for 6 months, same sleeping patterns. The doctor tells my mom that it will double each time I get it so I need to take care of myself so it doesn’t continue.
Not too soon after this, I break my hand being a kid and rollerblading in the neighborhood. It takes 3 doctors to figure out to turn my hand a different way on the X-ray to see all the fractures on the inside face of my knuckles that were not seen on a different view. 6 weeks in a cast… and oh! It was my writing hand! My teachers don’t seem to understand that I can’t just switch hands to write, so they make me use my right hand to write all the assignments and homework. Needless to say, I remain someone ambidextrous.
Medical Mystery #6
I’ve somewhat told you about my skin issues but I kind of glazed over it.
I was 18 when it started to happen. I noticed that after I washed the dishes my hands were swollen, red and itchy. I figured it was the soap I was using and kept that mentality for a number of years. I changed my soaps, saw a few dermatologists who said to try this or that, but it only made things worse.
If I went out in the heat and started to sweat, my whole body was itchy. Itchy like your skin was crawling in bugs, itchy. Exercise made me sweat… itchy. Showers… itchy before I even washed my hair.
The doctors my mom took me to kept telling me that there was nothing there. There was no reason for it and would send me home with a prescription for some expensive scentless cream or lotion that made my skin go crazy. We continued to search, but to no avail.
It got so bad that when I would shower, my husband would have to hold my hands to prevent me from scratching my skin off. I didn’t care if my skin bled or cracked or wept. The itch was so intense it would drive me literally insane.
My hands were the most visibly affected. I would wrap my fingers in cortisone cream and cover them in gauze. I looked like a leper. I finally got some medicine to stop my itching before I would shower. It was like taking 2 Benadryl just so I could get clean. And to deal with this, I had started showering every other day because my skin couldn’t tolerate the water.
Medical Mystery#7 and ten years later..
This process went on for over a decade, literally. It just became part of my norm. Using a certain brand of homemade soap, certain brand of razors and shaving cream, medicating before a shower and every other day…. I had stopped noticing how often I was itchy. I was always scratching my legs or arms or back. I was getting ready for a surgery when my GYN asks me why I am taking a particular medicine. I explained it to him and he stops…pauses… looks at me and says ” You live like this?”
He then referred me to a teaching hospital in North Jersey, where he thought they might have a better idea or more specific subject knowledge. At this point in life, I had all but given up hope that someone would believe me, but figured, ‘Let’s just try one more time.’ Couldn’t hurt for one more crazy reaction from a dermatologist.
OK, one more doctor..
So I went, told the doctor about it. Showed her my hands. She said, “It’s psoriasis.”
I said,” No it’s not.”
She looked at it under a microscope during my visit, said “You’re right, it’s not.” Then she said, “I don’t think you’re crazy. I think you really do have something and I think you have aquagenic pruritus.”
Then she proceeds to explain that it literally translates to itchy after water. (How does one become allergic to water…?)
I said to myself, “Well duh! ” as she explained that there’s no official way to test it except to do a skin patch test to rule out other potential irritants or allergens that would cause an issue.
Longest 3 days ever it felt like!! Turns out, not only did I have my body attacking itself after I went in water, but it didn’t like a bunch of other things that are in almost everything you eat or touch! I can’t live in a bubble, is what I told her!
I thanked her for everything, especially for believing in me. We came up with a treatment plan, including getting my triggers and allergens under control.
I, still to this day, am careful about where and when I shower, what soap I use and read the labels of products that are topically applied. Talk about a nontraditional PTSD!
So imagine my surprised face when I’m told that I am a patient with a disease that affects only one in a million people…HMERF (Hereditary Myopathy with Early Respiratory Failure)…
