Rheumatic Fever

Hi, my name is Sashymish00. I'm looking for guidance because it gets scary and hard to face it alone

#MightyTogether #RheumaticFever

Hi, my name is Sophia. I'm here because I want to talk to people like me.

#MightyTogether #HeartDisease #Depression #RheumaticFever

Hi, my name is LucyLupus. I'm here because I believe my childhood diagnosis of rheumatic fever was really lupus.

#MightyTogether #Migraine #RheumatoidArthritis

My whole life I’ve always gotten terrible body aches and rheumatic fever when I come down sick with anything from strep throat to a head cold.

I thought every one else did too.

Now I’m learning that it’s quite uncommon in my peers.

I assume it’s because I have an autoimmune neuropathy.

Does anyone else with autoimmune neuropathy get this?

What about if you don’t have autoimmune disease, do you experience this?

#AutoimmuneDisease #AutoimmuneAutonomicNeuropathy
#Strep

When my parents approved a biopsy from my 3.0.0.75 year old ankle to differentiate between RA and rheumatic fever, they never explained what lay ahead of me. Not even in my teens when I had a synovectomy of my left knee just prior to senior year in high school did anyone say things would keep going down hill. Probably a good policy as a preschooler but not helpful as a nearly adult woman who saw few limits I. Her future. Hmmm. I don’t blame anyone because looking at possible future “me” might have been too depressing. Fortunately, my father was a street fighter in the sense that he ran away from home in 1925, lives with virtual strangers, and put himself through dental college with minimal help back in Chicago at Loyola Dental School. Even at age 82 he was still climbing onto his roof, albeit a ranch house, to clean gutters and whatever caught his fancy. Terrified my mom, the other rheumatoid arthritic in our tiny family. I have walked away from more physicians than I can recall, concluding that they were more clueless about m condition than I. I am currently searching for another rheumatologist who will write scripts for generic ultracet, a drug I have used for 20* years that is the best option to augment my Xeljanz, Celebrex, and assorted heart medications and antihistamines. Ohio, my current and probable final residence, has a lousy attitude toward low level opioids which is ridiculous in my case. I don’t abuse them. Don’t exceed dosage levels. Don’t request scripts far in advance, a real joke since our drug insurance enjoys sending refills a month or four in advance. I am a good patient. I’ve endured right and left hip replacements in 1986 and 88, an ankle alignment in 2000, bilateral knee replacements in 2006, a left hip revision that required a second surgery a week later when the tip of the new implant popped through the femur in 2011,, aright hip revision in2018, a second right hip revision in 2021…so many incisions and so much fun. I gave up ballet and toe shoes in 1970, piano in 1977, cycling in 1882, walking without a cane in 1887, the list goes on.
It is difficult to accept each physical loss. I still experience enter over the piano and ballet. Of course, using a Rollator now to protect myself from falling makes ballet a joke. I am lucky to walk upright since I have a propensity to fall at odd moments. Some of those stories are hysterical. I had five falls in two weeks after our move to Ohio and loosened screws in my right hip. Yes, just like the ones in my head EXCEPT that one was pressing on my iliac artery to add a bit of drama to that last right hip revision. Scares that surgeon a bit but came through just fine. My wrists barely bend abs my elbows abs shoulders ache to varying degrees daily from use as supplemental legs. Five years after that right ankle surgical fusion my left ankle voluntarily fused itself. So thoughtful to keep both feet at 90 degrees. The list goes on but so do I. I am determined …
#RheumatoidArthritis

Fever. I did have it as a child.
#RareDisease

Losing a sibling young is an abomination of the natural order of the universe. Your siblings are, in theory, the only ones who know you your entire life. They share every childhood moment. They watch your children grow up. They help you survive a parent’s demise. At least this is how it’s supposed to be — in theory. Unless you lose your one and only sibling at a young age. Then you effectively become the only one who knows you your entire life.

This is my new solo journey now. My wingman, my partner in crime, my younger brother, was taken from me at the age of 27.

My brother was born the day before my 4th birthday, so I was convinced he was my birthday present. And when he came home, I was convinced he was mine, period. “Don’t touch my baby,” I’d say to anyone who dared to go near him. At night, after my parents went to sleep, I would steal him away and lay him in bed beside me.

And throughout his life, I continued to be the big sister with a vengeance. In my mind, I was his protector, his guardian angel, even when he didn’t really need one. We fought as normal siblings do, but we laughed more. We had that rare sibling relationship where we actually enjoyed spending time together. We were best friends, movie buddies, had the same sarcastic sense of humor.

#RheumaticFever, the doctors said. Irreparable heart damage. My brother spent his 18th birthday in the hospital, and was gifted with a 50/50 chance of living another five years prognosis. He defied them all by living another nine.

Grieving the loss of a sibling while they are still living is one of the most heartbreaking yet valuable lessons one can possibly learn. Knowing my brother was going to die sooner than later forced me to confront the notion of mortality, showed me you must seize every opportunity to live life to the fullest. But mostly it taught me the most valuable things in life are your loved ones, and you must never take them for granted — not for a single second. Because when they are gone forever, all you will have are your memories of your time together. And if you have any regrets at all about how you treated them or how little time you spent with them, they can haunt your soul.

The memories of my final years with my brother will forever burn brightly in technicolor. The trips we took, the birthdays we spent together, the afternoon we just randomly stopped and played a game of catch in the park. Leaving the hospital on the day he died, all I recall is the outside world looked grey, devoid of all traces of those vivid colors. Where had they all gone to?

That first year, I barely slept, rarely left the house, walked around clutching Joan Didion’s “The Year of Magical Thinking.” I was wading through knee-deep snow to place flowers on his grave for his birthday. What little sleep I did manage culminated in dreams about him that caused me to wake up bawling hysterically.

But one particular dream I had was beautiful and gave me much needed peace. In it, we were walking over a bridge together, looking out over a beautiful meadow. In the next instant, he was no longer beside me. I looked over to see him standing in the meadow, arms reaching overhead skyward. Was he trying to send me a message from heaven? Was he trying to tell me that it was OK to let him go?

#Grief completely consumes your life at first, but its almighty power over you gradually subsides. Over time, you are able to laugh again, to look through old photos with a smile instead of through a haze of tears. The color does return, but it will never be as vivid as before.

Someday, I will be the only surviving member of my birth family. My intimate childhood recollections will remain mine alone, as the only other person who shared them with me is missing from the story.

This is not the journey I chose, but I have to somehow make peace with it. Although my brother will no longer be accompanying me on this journey through life, I like to think there will always be a set of invisible footsteps walking beside me.