thejessence

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


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Fake and Fancy Free

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.

 

To finally catch up to the present day, I will go back to February of this year.

That was my last dermatologist appointment. A week before, I sunk down beyond frustration.

I felt like nothing was working. I was the girl with the headband. What I thought would help me grow my hair was turning into a monthly fiasco of prescriptions and doctor’s appointments with no light at the end of the tunnel. I didn’t see improvement.

So, I told myself that this was it. I was possibly ending any and all treatments for alopecia. I was tired of having my hopes up of one day not having the bald spots. I was done. I was ready to shave my head.

The doctor encouraged me not to give up hope just yet. She suggested taking photos again to show any progress. She said we would take another look at the next appointment and evaluate our options. I received a couple more steroid injections and would come back in a couple of months.

I paced back to my car with my eyes to the ground. To keep the tears from coming I decided to go ahead with my progress pictures.

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Photo by: Jessica McBride

As you can see, my scalp hates injections.

My head was throbbing. I sat in my car looking through all of the previous photos I had taken. The depressed fever set in and big, hot water drops rolled down my face.

I was so tired of being in limbo. Maybe I would have hair. Maybe I would shave my head. Maybe I would look at options at a later date. No answers. No when, no why.

Journalists don’t deal with unanswered questions very well. In fact, a no comment would’ve been better for my emotions.

I decided to make myself options since my body was taking them away. I threw the car into drive and went to Target.

I grabbed three different color scarves and checked out. I sat in the parking lot and taught myself how to tie them around my head via YouTube.

With a quick Google search I was on to my next stop.

I wasn’t real sure what to expect when I walked into the wig store, but I knew that I had to leave for the better.

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Photo by: Jessica McBride

The lady helped me look at options, and answered my questions. I tried a couple on.

I went short. I went long.

I went blonde. I went brunette.

I wore bangs. I went curly. I went straight.

The possibilities were endless. I enjoyed that.

Eventually I could buy several. I could be a red-headed wild child on the weekend, and an elegant brunette during the week. Maybe even a dumb blonde on holidays.

Who cared that people would know it was a wig. That wasn’t the point. This was something that I could do before and after if I decided to shave my head. This was the ultimate dream of being able to be blonde, curl my hair and change my look with no consequence and no commitment.

 

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Photo by: Jessica McBride

I decided bangs weren’t my thing, and I knew that I wouldn’t be able to afford multiple wigs at once. Just a heads up, wigs are VERY expensive.

This would be something I would have to build up over a long period of time, which would also mean that I wouldn’t be able to wear the wig on a daily basis because it would wear out.

I never thought in my younger years (HA!) I would one day purchase a wig for something other than for Halloween or to goof around.

I settled for something more natural to help with the transition for myself and those around me. You’re welcome.

When I returned to work, I encountered something that I hadn’t even realized had been absent from my life for the past four years. People told me my hair looked nice.

… and cue the tear roll.

It wasn’t anything I ever thought about. It was a change I hadn’t anticipated. It was bittersweet. I thanked them, and corrected that it was a wig and not my natural hair.

The questions flew, and it was relieving to discuss. Most of my co-workers were aware. Most that were unaware of my alopecia are now. The conversation was comforting.

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One person asked why I purchased it. I happily explained that I needed it for my mental and emotional health.

Then they took me back several years to when I told them I had alopecia.

When I tell people, I typically show them. The visual element is very impactful to some people, and though I don’t want sympathy, many times it helps them to know I’m not lying, or exaggerating.

When I was initially sharing this piece of me with this person, I made a comment about my bald spots being weird, or gross, or scary.

The person repeated their response at the time, that it was me and that it wasn’t weird or scary to them. It was physical and not part of my personality or heart.

Acceptance.

The biggest thing about alopecia that I can relay to anyone is the emotional pain and anxiety associated with it. Sure, it sucks to not have hair, but after it’s been gone for awhile it becomes the physical portion of you just like a scar or glasses.

Because so many people do not know or understand alopecia makes it somewhat embarrassing, difficult to explain and gut wrenching that your body struggles to make hair.

Additional layers of being a female with a “beauty” issue and that there is no cure and not much known about the auto-immune disease tear into a vulnerable mind and create an anxiety that is difficult to communicate.

I am constantly worried that my bald spots are showing. I am constantly worried that the wig might blow off in the wind. I am constantly worried that people won’t understand.

And while I shouldn’t have these worries, I do.

It’s been four years since my first bald spot reared its ugliness, and I’m still fighting.

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Photo by: Jessica McBride

I took my pictures at the one month mark for the dermatologist. We’ll see what she says next week.

 

 

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

Word Vomit

And Then It Appeared

Radius, Diameter and the Curious Spread

Shimmering Dresses and Comb Overs

The Monster Within

Peach Fuzz But Not Peachy Keen

Beauty and the Beast

25,000 Strands Lost

1 + 1 = 2

Bandana Bandaid

Reflection

My Hair is Full of Secrets

Follicles of Hope

Show Me The Progress

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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/


7 Comments

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/


9 Comments

Peach Fuzz But Not Peachy Keen

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.

Six months passed. A year passed. I had nothing to show on my head but a few little white hairs and the peach fuzz that you could feel but not see.

I had moved across state lines, and wasn’t going to be able to make the trip back to the same doctor.

I kept telling myself it would grow back. I took the maximum over-the-counter dose of biotin. I created concoctions of honey and cinnamon to rub on my head. I put olive oil in the refrigerator and shampooed my hair with it.

I researched essential oils. I picked one and started a nightly regimen of rubbing the lavender into my scalp.

I noticed the fuzz got thicker, but still no brown curly hair. I hoped the longer I would use these “miracle” supplements, I would start to see something. Anything.

Photo by: Jessica McBride Many never notice the creeping bald spot on the left side of my head because I would comb over the hair from the right side of my head to cover the baldness that developed. I retook this photo several times until I decided I didn't care if people wondered why my hairline gapped toward my temple.

Photo by: Jessica McBride
Many never notice the creeping bald spot on the left side of my head because I would comb over the hair from the right side of my head to cover the baldness that developed.
I retook this photo several times until I decided I didn’t care if people wondered why my hairline gapped toward my temple.

For another year I would dedicate myself to fixing this problem. Drizzle oil on my head, wrap my head in a bandana, go to sleep, wake up, wash out my hair, go to work, eat dinner, take some the supplements and then start the process again.

I found hope in each little hair that developed, but nothing more would come from it other than short, stubby fuzz.

How hard is it to grow hair? Apparently very difficult. Unless you’re a woman and trying to grow hair on your legs of course.

I knew that something was wrong, but after not getting help from those in the medical field before I was highly skeptical they would be able to do anything. Everything I read online didn’t give me much hope.

Surely I wasn’t the only one suffering from not being able to get my body to work normally. Rogaine is available over-the-counter so someone else was dealing with this.

I knew that if I went to the doctor again and demanded answers I would be poked, prodded and judged. I’m a very private person, and mentally I just wasn’t ready.

After combing my hair over like Donald Trump for so long, it started to thin where I would draw the part. I tried many times to shift the part towards the middle or further to the right, but there was either not enough hair to cover it, or it just didn’t look natural.

The tears, the anger, the obsession continued to grow after two years of watching my hair slowly disappear.

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/


12 Comments

The Monster Within

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.

I was sad. I was angry. I was dejected. I was stressed. I was scared. I was heartbroken. I was tired. I was anxious.

Photo by: Jessica McBride

Photo by: Jessica McBride

I was depressed.

My doctor’s appointment was in late October, early November of 2012. For once, I don’t remember the date.

As the date approached, I was hopeful that there was a cure. I told myself that this wasn’t a weird symptom to an unknown disease. I told myself that it wasn’t weird that I could grow more hair on my legs than I could in this bald spot on the top of my head that seemed to grow daily.

And then the darkness would creep in and remind me that this wasn’t normal. It reminded me that this spot was getting to me mentally and that I was starting to lose it. Forget a magical cure for a strange patch of scalp, I was a mess mentally.

Every time I would think about the fact that I had a doctor’s appointment the tears would flow. How would I bring up this oddity to a doctor without crying? How would I be able to convince the doctor that I didn’t need anxiety or depression drugs?

Those symptoms hurt most of all. I didn’t want to be a mental case. I just wanted to grow hair.

I couldn’t go outside of the house without creating my right part and using the hair that I had to cover up the monster on the left side. What was once slick and smooth was growing three albino white strands. I held onto those strands. I wouldn’t pluck them. I wouldn’t cut them. They were my hope to grow hair in the future. If I could get more then maybe I could look like Rogue from X-Men.

Who knew. Maybe I would develop mutant powers too.

I really did feel like a monster. A creature from the black lagoon to be banished to the darkest depths of the earth because I was incapable of one human function.

I prayed. I cried. I kept everything concealed so others wouldn’t know how I felt.

At my appointment, the girl took my temperature, weighed me and began asking my medical history. I was blind, never had braces and tried to remember to take a multi-vitamin every day. They had me fill out a form in the waiting room describing my symptoms, and I was completely honest because I thought it would make my condition easier to treat. I was brutally truthful about everything, the anxiety, the depression, the stress, the growing bald spot. I wrote down everything like a hypochondriac would.

She asked me the reason for my appointment and I explained that I had written everything on the paper. She told me to give her a summary to write on my chart. I was hesitant, but explained that I had an incredible amount of hair loss on my head. She looked at me and asked where exactly it was because she hadn’t noticed it. She wasn’t rude, just inquisitive.

I pulled the hair tie out of my hair and dragged my left hand backward from my forehead to the back of my head in one swift motion. Having curly hair, my fingers usually get tangled toward the end, but with the bald spot, there wasn’t any hair to get tangled.

Her eyes widened. “Oh, that’s a large patch.” I nodded. She seemed to brush off what she had seen and told me that the doctor would be with me. I re-created my part and pulled the hair back the left side of my face.

The doctor was kind. I opened up about my feelings and stress from work and the wedding.

She looked at the patch and touched it and the hair around it and then smiled.

“You’re stressed, my dear. You’re hair fell out because of stress.”

Well, that wasn’t the answer I expected nor necessarily wanted.

“It’ll grow back. You just need to relax.”

She said she could tell because I didn’t have any signs of infection and my Rogue strands were beginning to grow. She told me most likely the regrowth would be the same color.

I left the office surprised. I hadn’t anticipated any of that. She said to come back if I hadn’t seen any progress in 6 months to a year. That was a long time, but if it meant not being poked and prodded then I was on board.

I tried to remind myself of the doctors words. That would get me through this waiting period. I buried my emotions.

As Christmas neared, my husband asked what I wanted for Christmas. I remember that evening and am even tearing up as I retell it.

I cried. My response? “I just want my hair to come back. I just want to be able to grow hair.”

Such a simple request. What human couldn’t grow hair?

All my life, I’ve hated my curly, brown hair. I’ve hated the texture, I’ve hated everything about it even dying it a different color because everyone was brunette. I blamed my mother because she had the same type of hair, only black in color.

But I would’ve given anything just for it to grow back. I just wanted something to grow from the barrenness. I didn’t care if it was white. I could dye it. I could sport the Rogue streak. I just wanted hair.

That night I found it difficult to sleep, just like most nights. But I told myself that 6 months to a year really wasn’t that long of a time. I would do what I could to help it grow, and in time, I would be alright.

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/