thejessence

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


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Bandana Bandaid

Photo by: Jessica McBride I never wanted to be sick, but illness found me. Life will change, but the change will not define me.

Photo by: Jessica McBride
I never wanted to be sick, but illness found me. Life will change, but the change will not define me.

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.

My name is Jessica and I have alopecia areata, hypothyroidism and a severe Vitamin D deficiency. That’s what the doctor’s phone call told back in October of 2014.

Alopecia areata is an auto immune disorder that causes hair loss in round splotches. Experts don’t know what causes it. It can affect anyone at any age. Stress can contribute to the hair loss. Sometimes the hair can grow back, sometimes it never does.

Individuals with alopecia areata can sometimes go on to suffer from alopecia universalis, in which all hair on the body falls out including eyebrows and eye lashes.

There isn’t a blood test for alopecia. Doctors typically treat the symptoms.

Hypothyroidism is caused by the thyroid gland in your neck not producing enough hormones. Sometimes individuals with hypothyroidism are diagnosed with the auto immune disease called Hashimoto’s thyroiditis. It is the most common occurrence of hypothyroidism and happens when the body attacks the thyroid gland.

My ANA test for other auto immune disorders was negative.

Vitamin D deficiency can be caused by many factors including not receiving enough sun exposure or not consuming foods rich in the vitamin. Individuals would need to not have sun exposure, including walking from your car to the store, checking the mail, etc.

The doctor prescribed Synthroid to be taken daily to correct the thyroid problem and 50,000 IUs of prescription Vitamin D to be taken twice per week, one of the highest doses you can take.

But unlike people who are diagnosed Vitamin D deficient that don’t leave their house or drink milk, my problem is just that my body fails to absorb the vitamin and work like it should. I was told most likely this was genetic and most likely I’ve been like this my entire life.

During a blood test, normal Vitamin D levels should reflect 50-70 ng. Under 50 is usually considered deficient, but not necessarily to a level where a prescription is needed. My blood test levels were at 11 ng.

Most people with this deficiency have problems where they’ve had many consistent broken bones. Instead of writing the jinx, I’ll just say that God protected me through all my years of cheering and tumbling.

A few days after the phone call, I went to see the dermatologist. I had researched what a scalp biopsy was and to my horror, took my husband with me to the appointment. Curious about what it is? There’s a YouTube video showing it done on an orange. Watch it. I refuse to post the link out of fear of passing out.

The nurse called my name, and completed the usual round of drills.

When the dermatologist came in, she examined my head and developed an anger for the original doctor that told me I would be fine.

“I’ll send in the prescription for Plaquenil and corticosteroid cream and see you in three months,” she said.

Total time spent in there? Maybe 10 minutes. I didn’t know whether to be angry or ecstatic. Neither did Randy.

I had researched before my appointment and the blood test and learned about Plaquenil so I didn’t have many questions.

Plaquenil is used to treat malaria. Ha!

They’ve also found it useful in treating auto immune diseases such as lupus, rheumatoid arthritis and alopecia. The only draw back is there’s a little side effect that occurs very rarely where your vision is severely damaged.

In alopecia patients, they use Plaquenil to help change the way your immune system works to prevent it from destroying your own hair follicles and help you regrow hair.

Both doctors warned me that by having two auto immune conditions I have a high chance of developing others. Or, maybe I won’t.

The hypothyroidism could have triggered the alopecia, or possibly not. They could not be connected. The joint and muscle pain was caused by both the vitamin deficiency and hypothyroidism. The rash? Apparently I have a mild sun allergy. Ha!

I would see both doctors in three months, get blood tests every six months and a vision test in six months as well as every six months after that as long as I am on Plaquenil.

This wasn’t what I wanted. I didn’t want to be sick. I didn’t want to be subject to a doctor’s care for anything other than antibiotics for a sore throat. I wanted my body to work like everyone else’s. But this was the new reality. Alopecia, hypothyroidism and Vitamin D deficiency would be around for the rest of my life.

This was something that I could handle. I knew I would have days I would struggle, and I knew I would have days where I would be able to conquer the world.

For years I had put a bandaid on a gaping wound, and my only hope was that the doctors could fix it.

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

https://thejessence.wordpress.com/2015/07/02/word-vomit/

https://thejessence.wordpress.com/2015/07/02/and-then-it-appeared/

https://thejessence.wordpress.com/2015/07/15/radius-diameter-and-the-curious-spread/

https://thejessence.wordpress.com/2015/07/27/shimmering-dresses-and-comb-overs/

https://thejessence.wordpress.com/2015/08/02/the-monster-within/

https://thejessence.wordpress.com/2015/08/16/peach-fuzz-but-not-peachy-keen/

https://thejessence.wordpress.com/2015/08/22/beauty-and-the-beast/

https://thejessence.wordpress.com/2015/08/30/25000-strands-lost/

https://thejessence.wordpress.com/2015/09/07/1-1-2/

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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.

https://thejessence.wordpress.com/2015/07/02/word-vomit/

https://thejessence.wordpress.com/2015/07/02/and-then-it-appeared/

https://thejessence.wordpress.com/2015/07/15/radius-diameter-and-the-curious-spread/

https://thejessence.wordpress.com/2015/07/27/shimmering-dresses-and-comb-overs/

https://thejessence.wordpress.com/2015/08/02/the-monster-within/

https://thejessence.wordpress.com/2015/08/16/peach-fuzz-but-not-peachy-keen/

https://thejessence.wordpress.com/2015/08/22/beauty-and-the-beast/