I remember it was cold outside and the school allowed the girls to wear sweatpants under our skirts while outside.
I kneeled down on the ground and damn near screamed loud enough for frozen microbes on the moon to hear me.
A teacher came running over and asked me what was wrong. I remember being scared to death to roll my sweatpants up so they could examine my knee, I didn't want to know what could be so painful.
Out of nowhere (didn't have them that morning) I had 4 or 5 huge "in grown hair" looking lesions on my knee. Extremely tender, painful, red, inflamed, and terrifying to a young school girl. The teacher thought something bit me, maybe allergic reaction.
Escorted me to the office to have my parents called.
This was the beginning of a lupus diagnosis.
I don't really recall the doctor visits that transpired, but ultimately my pediatrician, bewildered by the odd symptoms, referred us to an awesome derm & allergist.
I recall him toying around different diagnosis, but mostly rubbed it off as contact dermatitis.
I was constantly embarrassed. One mother wouldn't let her daughter come over anymore because she said we were "dirty" and that I had bugs under my skin. Humiliating.
I was alienated from girl scouts, sports. I felt deprived of femininity as a young girl because I was too afraid to wear a skirt because of lesions and residual lesions.
That was until a lovely new symptom presented itself..
Fast forward to 11 to 12 years of age. Since the lesions first presented, they continued on and off. But never as severe as when they first presented. (as a child, I noted my symptoms were always worse in cold weather and healed in the sunny warm weather.)
My grannie took my to a fast food restaurant and on the way back home I was balancing a cold cup between my legs. I had on shorts from school this time.
When we got home and I walked up to my mom she freaked out.
She immediately dropped to the ground to inspect my legs. In between my thighs were HUGE welps from the cold drink.
You would have thought I laid a hornets nest between my legs and said have at bees!
Back to the derm we go. Again we leave with contact dermatitis, instructions to carry benadryl gel & pills as needed. FUN. Benadryl knocks me out. Was not fun as a kid.
A couple months down the road ANOTHER symptoms dawned.
This the scariest yet.
Again, I was at school. Again, this was in winter. Again, during recess.
I had on gloves, the whole winter outfit, running around playing.
Till this day I remember something didn't feel right. My hands felt so cold and numb. As kid, I had no idea what was going on. It wasn't until we went back to the classroom and I took my gloves off that I screamed and almost passed out. I literally thought I was dying.
My hands were paper white from the finger tips to the beginning of my palms. Both hands.
You can only imagine the humiliation I received from my freaked out classmates.
My teacher had never seen it before.
My instinctual reaction was to find something hot. I bolted out the classroom and began warming my hands in water, and slowly and painfully I regained circulation.
This time, the derm explained ANA titers and all that fun stuff... and I was diagnosed with
"underlying lupus" with secondary Raynaud's phenomenon.
He didn't deem it full blown, it was like the lupus came and went, each time with a new bag of surprises in store.
Now, as a young adult I am still plagued with symptoms that come and go.
The Raynaud's phenomenon has never gone away, I've learned to live with it. It's like a part of me. I'm used to it.. It has gotten worse, a few years ago it progressed to me toes and sometimes my nose and ears.
That doesn't stop me.
Last summer I still went on the snowy Tahoe slopes.
The thing about RP, is once I flare up, if I "cure" it with hot water, I'm not susceptible for another flare for 6-8 hours. Weird.
Till this day I don't get those weird lesions anymore but I do get hives like its the latest fashion statement.
I get hives at random. No particular reason. The amount, frequency and duration of the hives is the same with different soaps, travel, clothing, animal dander/hair, UV radiation.. you name it, the hives are unaffected.
So, Benadryl spray it is. Just a little dab and they go away.
I always have a runny nose, this my doctors have always attributed to the lupus. The runny nose is annoying and at times, embarrassing, but what can you do.
Benadryl pills impair my daily life, Claritin don't do shit, Allegra don't do shit, Clarinex don't do shit, Zyrtec don't do shit. Just good ole Puffs + lotion.
Joint pain. Rheumatoid arthritis is always an eery thought lurking in the back of my mind. Especially with the bilateral stiffness.
The pain is usually relieved with a hot bath and some advil.
Its mainly my knees that bother me. I try new shoes, avoid crossing my legs, different sleeping positions to relieve pressure/aid alignment. No relief. This is probably the most annoying symptom aside from the hives and RP.
Now something new... I have a mouth ulcer.
:(
I am stressed, but not beyond normal and I've also been managing my stress better with some biofeedback mechanisms.
After doing some research, I'm just going to blame the lupus for this one.
What a life.
Whenever I see the quote "be nice, you never know what battle someone is fighting"
I think of myself first, and wish people knew the pain I am in, and secondly I feel sympathy for that person because I can only fathom worse misery and embarrassment than what I've felt.
Anyone who reads this can react one of two ways.
1. You will label me a hypochondriac. Your choice.
I have real pain, real suffering. I hardly tell a soul I have lupus because in the past, people reacted like I told them I had AIDS and was about to belch blood all over their face.
The public is not well educated on lupus and are afraid of it.
Lupus comes in all shapes and sizes. I do however have supporting lab work that at least, puts some sense into my symptoms.
2. You will take this as knowledge and "pay it forward"
Whether it is someone you meet or already know with lupus or RP, or some stranger you see and decide not to judge them for you know not what battle they are fighting.
Albeit all that I just spilled, I am a very healthy young woman.
I'm roughly 5'1"
Around 110-115, been a while since I weighed.
I'll toot my own horn and say I think I'm pretty good looking.
I don't "look" sick. I don't have a physical amputation, hair falling out from chemo or a cast.
I have slight symptoms that easily go undetected, or I've become used to "hiding"
I hate people seeing the Raynaud's.
There is always an *underlying* meaning.
Mine is a borderline silent ailment that causes me great personal pain, but one the same token, I value so much out of fear for how quickly this "silent ailment" can turn on me for the worse.
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