My Relapsing Polychondritis Flare, Treatment, and Results A Health Reference
As I awake to the morning light, I quickly realize raising out of bed is not an option for me.
I am not able to lift my head.
I need to use the restroom, so I decide to a different approach to getting my body out of bed.
I roll my body onto the middle of the bed and pull up the upper part of my body by gripping onto my legs.
The swaying power of my body enables my feet to land on the ground, and I move my arms from my legs to use my hands to reinforce my neck muscles.
My strategy works but the stabbing pain that jots down the left side of my neck lands me back in bed within minutes.
I lay back in bed and decide to express my Relapsing Polychondritis frustrations, experience through this HypoGal Blog post.
I think about the start of my latest Relapsing Polychondritis flare.
Friday With A Relapsing Polychondritis Flare
My Relapsing Polychondritis flare begins to rage last Friday, and I promptly raised my steroids.
Last Friday night my body feels like it is inside a crock pot set on high heat. The flesh inside my body seems like it was on fire.
When I stare into my bathroom mirror, my crock pot theory is confirmed. My ears are bright red from cartilage destruction.
The rare chronic disease, Relapsing Polychondritis that lingers in my body is in battle.
From the look of my red ears, it appears my body is in the midst of winning another battle against itself.
It is frustrating that I am unable to control my body or to redirect my body’s desire to conquer itself.
Friendly fire is destroying my body.
The redness from my ears is a telltale sign of inflammation.
Saturday With A Relapsing Polychondritis Flare
As Friday evening turns into Saturday morning, I feel the inflammation of my ears has invaded my neck.
I spend Saturday upping steroids repeating a thirty-minute cycle of icing and heating my neck.
Sunday With A Relapsing Polychondritis Flare
Sunday I spend in the same medical healing style as Saturday. Unfortunately, my neck muscles continue to weaken. My neck muscles scream in pain every time my body moves. The increase of neck pain makes it apparent I am losing another battle to Relapsing Polychondritis.
I begin to get nervous Sunday night as the tightness around my throat increases, and my jaw has a difficult time opening and closing.
To eat or drink I have to bring the product up to my mouth. Food spills down my pajamas as liquid dribbles down my chest.
By late Sunday night, I am full of self-pity, understanding medical suicide, and emotionally drained.
My mind in unendurable pain can understand why desperate people try unconventional, half-wit ways to stop their agonizing pain. The type of pain that causes you to cry like a wounded animal and blurt @!??@@!!
Monday With Relapsing Polychondritis Flare
As dawn broke on my West Coast Monday a brilliant NIH medical mind in the East Coast offers me compassion, wisdom, and direction.
The darkness that surrounds me turns to gray as kind hearted Emergency Doctors organize a same day procedure so I will not have to stay in the hospital.
My Relapsing Polychondritis Treatment
My high in demand, scheduled out for months pain management doctor, Dr. Fadavi offers to provide me with the same day steroid inject procedure. He kindly widens his day to accommodate my medical needs.
Yesterday afternoon my husband try’s not to twist his face in sympathic pain as he sees my pain management doctor inject steroid syringes into the inflamed areas of my neck.
It is an eye opener for my husband, David to watch the physician use an ultrasound machine to view the sections that are causing my neck pain.
Dr. Fadavi graciously takes the time to explain how portions of cartilage are impeding the blood flow through my neck.
I am grateful that Dr. Fadavi can see how my invisible rare disease Relapsing Polychondritis is damaging my body.
Being in a battle with an invisible enemy is hard. An enemy that may not always show positive on lab results, plays peek a boob with inflammation and leave you feeling defeated.
After the steroid neck injections, Dr. Fadavi reminds me it will take a couple of days for the steroids to kick in. He tells me to use my pain patches and not to wear my neck brace too much.
Dr. Fadavi explains the neck brace will not allow my neck to gain strength. I quickly point out that I am not able to keep my head up. I feel like I am back to the question chicken or the egg?
I will try to limit the hours in a neck brace I politely tell the doctor.
As I hobble out of the physician’s office through the waiting room with my husband, David takes a second notice of all the people in pain.
We slowly walk back to our car, and I see several patients quietly pushed by their caretakers as they sit inside the seat of their walkers.
I understand these sick people all too well. I reflect.
I do not believe what does not kill you makes you stronger.
What does do not kill you makes you different.
Your difference may be how you see that a glass is half full or half empty with water?
Like many with a chronic illness, my glass often looks different.
Today my glass is half full.
As I finish this HypoGal, My Relapsing Polychondritis Flare, Treatment, and Result blogI look around my bedroom and laugh.
Tuesday, My Health With A Relapsing Polychondritis Flare:
Here is an honest look at my Tuesday afternoon:
- For days my bed consist of piles of crumbled sheets
- A McDonald bag and coffee cup sits next to me, (my husband brought me oatmeal and coffee this morning)
- A much-used heating pad
- A navy neck brace with an air pump to adjust pressure
- Pain medication patch lays a foot from my bed
- The other side of the bedroom sits piles of my clothes
I look at my phone screen that is within an arms reach of me and note that there are voicemails I need to return.
I am not up for answering calls.
I do text back and forth with a couple of friends. These friends understand my world or lack of outside world.
I feel like my Relapsing Polychondritis flare is on the mend because my body seems stronger.
I have the energy to roll out of bed by clutching my arms to my legs and pulling my body into a ball.
My world with several rare chronic rare diseases is different from my old life.
What has not yet killed me has made me different.
I am thankful that I can laugh out loud this afternoon and say my cup is half full.
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You may also find these Relapsing Polychondritis/ Health References weblinks helpful;