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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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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Follicles of Hope

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Photo by: Jessica McBride

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 day, the step into the shower is a frightening experience. The refreshing tingle of shampoo produces apprehension. I close my eyes and gently massage my scalp with my fingertips, hoping I don’t pull out too many strands of hair.

Rinse. Examine the damage.

It never fails that I’m pulling hair from between my fingertips. To keep it from clogging the drain, I plaster it in a pile on the wall for disposal later.

Now for round two. I lightly smear the creamy conditioner into my hair.

Rinse. Open my eyes and hope for the best.

Again, I’m unweaving the long strands of hair released from my head from between my fingers.

It’s almost as if I’m counting each strand as I survey the damage.

With each wash or brush, I dread the horrifying affair of finding another spot. Each hair lost is another potential sign that I will never be rid of the baldness.

Early in 2015 I had raised my count to three spots. At my next dermatologist appointment, I was crushed. This saga was going to be my future. I would never have a full head of hair again.

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Photo by: Jessica McBride

I think the doctor realized I was almost to the point of giving up. Without details, she mentioned another case she was treating. A female patient had a large bald spot on the back of her head that was continuing to expand.

The patient had come in for several months, and was hesitant to take Plaquenil to help. She had shared a bit about my case with her, that I had suffered from alopecia for three years and that I was having success on Plaquenil.

Success. I wasn’t certain she was still describing my case, but it still gave me a little hope.

The patient had decided she would try the “miracle drug.” I smiled.

When I got home, I compared some of the pictures I had taken and relived every advance and every set back for the past three years. Then I looked in the mirror.

I wasn’t fully recovered, but the progress was evident. The hair farm on my head was producing, slowly, but my scalp was yielding fruit.

At my next regular doctor’s appointment, she noticed the improvement as well.

I would give it a year. I would evaluate the progress then before I considered shaving my head again.

I would try and kill the pessimism with the optimism that there was someone else suffering just like me that I needed to give hope to.

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/

 


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My Hair is Full of Secrets

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Photo by: Jessica McBride

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.

In March 2015, I just knew that before the end of the year I would be rid of the scarves and comb overs and would be able to put this whole awful experience behind me.

I began looking at short hairstyles that would trim all of my hair to one length. The excitement pulsed through my veins and went as far as to put a skip in my step. The darkness was over and soon this princess wouldn’t have to hide her affliction anymore.

Every day concluded with a trip to the mirror to admire the new hairs growing. You would have thought I could count them.

The Chi straightener and curling iron that had collected dust for the past several years would be dug out of the bathroom cabinet. The colorful scarves I had purchased to match my daily wardrobe would be boxed and stored in the top of the closet.

After thinking all hope was lost, I would wake up from every woman’s nightmare with a head full of hair. I wouldn’t look like a gypsy or cancer patient any longer.

I had another appointment with my regular doctor at the six month mark. Everything was going well, going as planned.

A few days after my appointment, I showered and blow-dried my hair, only to discover that my plans had been canceled.

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Photo by: Jessica McBride

There it was. Round. Bald. Incurable. On the opposite side of my head.

The color drained from my face as I slowly laid my brush on the counter. I stared for what seemed to be hours. My heart had fallen so hard and fast into the pit of my stomach. It was happening again.

I did everything right. I took my medicine like I was supposed to. I listened to everything the doctors said. I made sure to take really good care of the hair I had.

But it wasn’t enough. My body had killed the hair follicles in another spot on the right side of my head.

I knew how this story line went, because I had lived it before. This would make parting my hair even harder to cover my disgrace, and I knew that eventually I wouldn’t be able to part my hair any more. The head band would be a part of my daily life to hide from the world.

I took the picture, and finished my routine to go to work. I pulled on the head band so the world wouldn’t know, so the world wouldn’t see and attempted to block the new bane of my existence from my thoughts.

I was cursed. I was plagued with an insufferable abnormality of which no one could understand the pain.

When I returned home, I pulled out my husband’s hair trimmer. I sat in the floor of the bathroom with the trimmer in hand. I thought about why I even wanted to keep my hair. I absentmindedly gazed at the device that might be the gateway to my freedom.

The slideshow in my head portrayed images of beautiful, smiling, bald women. I was minutes away from joining the society, shaving the connection to my suffering.

I had a dermatologist appointment in a week. I didn’t know what in the world I would tell her if I chopped off what she had been trying to grow. Then I compared myself to Britney Spears and her head shaving episode. I couldn’t let my unhappiness land me in the crazy club.

I put the trimmer back in the cabinet. I would hear what she had to say.

As I pulled off the scarf in the her office, I strained my face so the tears wouldn’t appear. I told her it had happened again, and looked down so she could dig through my hair to examine the damage.

She stepped back and I studied the grim grin on her face.

“This most likely won’t be the last time,” she said. “This will happen again, that’s part of alopecia.”

I knew this. I knew all along that this was likely. So, why did it sting so much when it did?

I decided not to shave my head. I didn’t think it would help, but it would remain an option. I wanted to give the doctors a chance to make their plan work.

Would it take a year or longer? I didn’t know. She thought my medication would help this one grow back faster. I refused to get my hopes up.

 

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/


4 Comments

Reflection

Backyard Flowers

Photo Credit: Jessica McBride

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.

It wasn’t long after my diagnoses that I began to see results. I generally felt better, not as sluggish.

Little hairs began to appear in the follicle desert on the top of my head. I tried not to get my hopes up. There was a good chance that my hair would never grow back since it had been bald for so long.

There was a good chance it would grow in completely grey or white. (Again, I’m going to put my theory out there that Rogue has alopecia.)

There was a good chance it would be patchy or thin. I was prepared to shave my head when that time came.

There was a decent chance that it would grow back. I wanted so much for this to happen and for it to all be over with. Just a story that came up every once-in-a-while that my hair fell out and grew back. Almost like it was just a bad dream.

There was also a good chance that I would lose my hair again, whether it be in the same area or a different place. This was something I would have to accept.

Around January 2015, the excitement built inside, and I dreamed of long, flowing locks of chestnut hair. I imagined styling my hair again. I envisioned a tousled mane waving in the gentle breeze as I jogged down the beach. Ok, minus the jogging part.

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Photo by: Jessica McBride

Then reality would set in and I would be reminded that it was quite possible I would wear a headband the rest of my life. The tears would begin to flow, and I would have to spend a few minutes reminding myself that I am stronger than this, that even though society dictated a woman’s hair strengthens her beauty, I would not let society’s expectations bother me.

I wondered how long I would take a pill in the morning, another one at dinner, another twice a week, and rub the greasy serum into my scalp every morning and night.

Only time would tell.

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/

 


5 Comments

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/