Relapsing Polychondritis Life That Includes Sheehan’s Syndrome
As the thought of my fifty birthday candles neared so did my desire to shed a few years and glam up my world. Sadly, more days than not, my body had felt it had lived through several tremulous lives. However, my facial creases might have indicated my days spent in this world contradict the age of my internal body.
Life with an invisible disease can be deceitful. A majority of the time there are bittersweet moments where my outward appearance has seemed intact but my constant game of tug of war within my body has caused me to ache with fatigue. Each day I have tried to swallow the right combination of mediations to keep my body from being pulled into a sea of red, hot lava.
My world with Relapsing Polychondritis has been difficult to understand, there is very little information about this rare disease and the treatment plans are limited. So, a majority of the time I have felt like a circus tight rope walker and my medications have been the pole I have used to balance.
The last month my balance has been off. My father passed and the emotional grieve threw me into a downward spiral. I had upped my steroids and then upped my steroids again but my dizziness increased, sweats prevailed, fatigue radiated my body, brain fog consumed my language skills, my insides burned and my ear showcased their Relapsing Polychondritis symbol of red.
While I tried to figure out the right combination to extinguish my red ears I realized I needed to trust my inner voice. So, for the next several days I swallowed a sufficient dose of Prednisone and upped my sodium intake. My unscientific method worked and my body has slowly regained its small tug a war winning stance.
As the heat from my cartilage was doused with steroids my outside appearance received a new look. I decided to have some fun on Halloween, my birthday. I paid a small king random for my Halloween costume that included my new look; long thick, dark hair.
Before my Sheehan’s Syndrome days my hair was extremely thick. Half jokingly, numerous hairdressers had commented to me that I should pay for two haircuts due to my enormous amount of hair. It was at the start of my Sheehan Syndrome years that my thick hair shredded its volume and my once thick, shiny hair no longer existed. The effects of Sheehan’s Syndrome unbalanced hormones had caused the superficial aftermath of my thick hair. My once shiny dark hair continuously had fallen out in clumps. As I watched my hair fall out in clumps it reminded me that my hormones were amuck. I still had enough hair to cover my head and the ponytail hairstyle had been my daily go to style.
To celebrate my fifty candles I had human hair extensions woven into my scalp. On my birthday, I spent approximately an hour and a half while the hairdresser stitched the hair extensions into my scalp. I was in awe with the result. As I looked into the salon mirror I would not tell which areas of my hair were my natural hair.
Throughout the Halloween evening I stared at myself in disbelief. I was thrilled that my purchased hair matched perfectly with my real hair. I felt glamorous, I felt girly and it was fun.
The next day, my thick, shiny hair reminded me of my battle with Relapsing Polychondritis. The dark brown metal brackets that held my purchased woven hair in place constantly pulled on my scalp. The painful sensation from the constant pull of the extensions drove me seek immediate remedy.
There was no way I could wait to see the hairdresser to address the pain from my extensions. My second nature instincts had caused me to immediately try to eliminate the pain. I grabbed a pair of everyday scissors from my bathroom drawer and asked my husband to cut off three to four inches of my hair. As soon as the inches of hair fell to the floor my head felt lighter. I was immediately relieved not to have the additional weight pull on my head.
The next day I was still in a tug a war with my extensions. I had pulled, yanked, and picked out most of the extensions. As I forced self-inflicted pain with numerous strong pulls on my extensions, I laughed at my self-induced craziness. I thought I could remove the extension with greater ease if I tried to separate my extensions from my scalp.
I laughed because I promptly realized, I had again tried to mimic what my body once produced naturally. Similar to my Pituitary Gland, my once thick hair was gone. I should have realized that you can try to mimic what your body should produce naturally but it is never the same.
Below is a photo of some of my extensions in our trash can. The hair is real, the hair did not grow from my head. I still have a couple of hair extensions and I have waffled if I should just be done with the hair illusion. I am grateful there are medications that try to mimic the natural hormones my body should produce but my head screams; it would be much happier with the real deal.