thejessence

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


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Show Me The Progress

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.

Every six months, an eye appointment to make sure the Plaquenil wasn’t destroying my eyes. Having to sit in a dark room and click a button when I saw the squiggly for five minutes per eye.

Every six months, an appointment with my regular doctor for blood work. Changing the amounts of my thyroid medicine and prescription Vitamin D.

Every three months, an appointment with the dermatologist. A smile that the bald spot was improving and a, ‘see you next time.’

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Photo by: Jessica McBride- How I feel when I go to the doctor. Luckily I don’t get stabbed like this on my arm.

It gets old fast. Poked. Stabbed. Drained. Same routine. Two pills a day and another once a week.

For a while I was convinced that I was very close to being normal again. Then the days would come and remind me that I was still far from it.

Comments about grey/white looking hair coming from my head and that I should do something about it. Comments that went a little like, ‘I always can find you in the crowd, I just look for the headband.’

My pride was shot. That’s not at all what I wanted people to see.

At the next dermatologist appointment, I was told that they assumed the other patient was back to normal because they hadn’t seen her since. Great for her.

My alopecia on the other hand, had stopped improving. It was time to try a combination of things. An old man at the clinic that is renown for his work with alopecia and hair cases came in. He observed me through a magnifying glass while the other doctor patted my head.

They decided steroid injections was the next step.

If you’ve never had an injection on your scalp I don’t recommend it. It is painful. If they’re injecting an alopecia spot, it’s not just one go. It’s several.

Small liquid pockets settle just under the scalp, resembling the mosquito bites you used to scratch as a child until they’d swell up to form one large lump.

The initial pain subsides in 15-20 minutes. Then a headache sets in for the rest of the day.

I knew this was going to be several rounds of pain. I just hoped that it wouldn’t be without results.

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Photo by: Jessica McBride

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/

https://thejessence.wordpress.com/2015/09/12/bandana-bandaid/

https://thejessence.wordpress.com/2015/11/17/reflection/

https://thejessence.wordpress.com/2015/12/05/my-hair-is-full-of-secrets/

https://thejessence.wordpress.com/2016/01/06/follicles-of-hope/

 


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The Public Perception

I saw this video shortly after it came out. My initial instinct was to share immediately on my blog, but I hesitated.

One of my biggest battles with alopecia is not only helping people to understand, but also their perception of what it’s like to not be able to grow hair and the loss of control that person feels as a result.

I have debated since I was diagnosed whether I should shave my head and rock the bald or opt for a wig. I continue to change my mind on almost a daily basis, but I know that at some point because there’s not a cure that I will ultimately reach for the clippers.

What do you think?

By the way, massive props to Buzzfeed’s Becky Harris for sharing her story.


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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/