The energy of the mind is the essence of life. – Aristotle


25,000 Strands Lost

READER ADVISORY: Some photos and descriptions in this story might be disturbing to some individuals. Use discretion when choosing to continue. Previous blog posts leading up to this story are located at the bottom of this post. It is suggested that the previous posts be read first for a full understanding of this post.

For two-and-a-half years my hair fell out slowly until I decided that I could scare kids at Halloween by dressing up as Two Face from Batman.

It was a struggle to look at myself in the mirror. It was a struggle to style my hair. It was a struggle to be around people because I never knew when the hairspray wouldn’t hold or if I was just going to have a bad hair day.

I scheduled an appointment with a primary care physician.

I had to wait several weeks before I could get in, so I decided to prepare myself by doing all the research to try and understand what would happen at the appointment.

WebMD became my go-to website, which actually just scared me even more. I narrowed everything down to alopecia, several other auto immune diseases that had strange names, brain tumors and lupus.

Ever watch Dr. House diagnose patients? It always felt like every time they had a weird disease that was manifesting in a patient they always considered lupus. So, I didn’t feel like the scientist in me could rule it out.

I reviewed symptoms. I reviewed medical procedures. I reviewed any lifestyle changes that might be coming. I read all kinds of internet articles that would help me understand what I was looking at in the mirror and what the doctor might say when I went in.

Photo by: Jessica McBride

Photo by: Jessica McBride
My hair had always fallen out in the shower, and I had always pulled a ton of my hair out of the vacuum filter.
I knew I shed a lot, so it never seemed that I was shedding more than normal when my hair started falling out.

The morning came and I went in expecting to be scheduled for lab work. In fact, I was almost going to demand lab work after my last doctor encounter. Something was wrong and I knew it.

They did the normal weigh-in, blood pressure/temperature check to make a hypochondriac feel fat, old and sick, and then led me to the exam room where I would try to laugh off my bald spot for the last two-and-a-half years.

The nurse informed me they had a medical student that was reviewing cases with the doctor and asked if it would be ok if they joined. I nodded in approval. I mean, I was already the freak of nature that was playing guinea pig for a day. Plus, maybe I would make some student’s ‘case of the day’ list.

The two entered and I removed my head band so they could see my problem. We then went through a list of family medical history. Diabetes, check. Crohn’s, check. Cancers, check. Arthritis, check. Thyroid disease, check. I knew I probably was leaving out a lot of family medical history, but those were the ones I knew about.

Then we started with symptoms. Hair falling out, check. Tiredness, check. Anxiety, check. Skin irritations, check. Joint pain, check. Weird discoloration in the fingers and toes, check.

When you’re a hypochondriac researching diseases you tend to ‘develop’ symptoms. But, I realized I did have symptoms. Maybe I’m not a hypochondriac?

For the past two-and-a-half years I felt that everything just made me exhausted. Like, fall asleep at 7 p.m. on the couch and still sleep til 6-7 a.m. exhausted.

Anyone who’s hair falls out is anxious. That symptom was a no-brainer.

The skin rashes appeared when I was in college. On the L part of my hand between my thumb and pointer finger I would break out in a rash that would spread across those fingers and my hand after being out in the sun. Sometimes I had to spend a long time in the sun for it to appear, other times it was just from being outside 15 minutes.

The joint pain started in college too. I cheered in college so I never really thought anything about it. Ibuprofen never seemed to make it better, but if I iced it and took some Aleve it would go away in a couple of days. I always figured the burning sensation was just from straining my muscles and joints. After college, I just figured all my cheer activities were still taking a toll on me.

The skin discoloration went back to 4th grade. We lived in the panhandle of Texas and I liked to run around barefoot in the house in the winter. My two outside toes on each foot would turn purple. I actually had blood work testing me for lupus since that was a symptom and everything came out clear. The pediatrician told my mom to keep my feet warm.

The doctor asked some more questions and then made a guess. She was pretty sure it was an auto-immune disorder. My thoughts too. She was going to send me in for blood work. My thoughts too. She would also send me to a dermatologist to get my hair growing again. Great. Worst case scenario, lupus. My thoughts too.

My blood work would be back in two weeks. They were going to do an entire panel including an ANA test.

She smiled and talked about lighter things. I think I probably looked nervous and scared. I never wanted to be the 28-year-old with health problems. Then, she looked at my fingernails.

I hate my fingernails. I have nail beds that are wider than they are long. They look like hobbit finger nails. They’re not pretty girl hands, but ridged nails that look old and decrepit.

She suggested that maybe it was just a thyroid disorder. The ridges were a symptom. She made it sound as if every woman had a thyroid problem at some point in their lives.

That made me feel a little better, but I still was not looking forward to a two-week wait to discover what in the world would cause my hair to fall out.

She also said that when one auto-immune disease presented, it also meant that the likelihood more would develop increased. If you have one, you can usually have two or three. I also knew from my research that auto-immunes could be hard to diagnose.

She said the dermatologist might do their own tests, which might include a scalp biopsy. Now that was a new term I could research to prepare.

It also made me feel better that I was prepared, even if I didn’t know all the answers. In two-weeks I would see the dermatologist and have my blood test results. In two-weeks, I would have the answer I had been searching two years for.

For clarity on the story above, please read the blog posts below.