RECORDS AND PAIN

MY MEDICAL RECORDS CAME IN! IT WAS LIKE OPENING A TREASURE. I WAS IN SUCH A FOG 11 YEARS AGO, I COULDN'T REMEMBER A LOT OF WHAT THE DR.'S TOLD ME ABOUT WHAT CONDITION I HAD. DR. SOBIESK TOLD ME SOME THINGS THAT HE THOUGHT THAT IT COULD'VE BEEN. SO THAT'S WHAT I REPORTED IN MY LAST POST. HOWEVER, WHAT DR. SOBIESK FOUND OUT WAS MUCH DIFFERENT THAN WHAT HE THOUGHT.

I EMAILED HIM AND TOLD HIM THAT I HAD A FIRST BRANCHIAL CLEFT CYST. HIS RESPONSE WAS INTERESTING.

THIS REPLY WAS... WELL I REALLY HAVE NO WORDS FOR HOW THIS RESPONSE MADE ME FEEL.

LET ME EXPLAIN A BIT ABOUT THIS CONDITION. ACTUALLY I'LL DO IT THIS WAY.

http://www.healthline.com/health/branchial-cleft-cyst#Overview1

THE LINK ABOVE IS A PRETTY GOOD EXPLANATION. THE FIRST BCC (BRANCHIAL CLEFT CYST) IS THE MOST RARE AMONG BCC. THERE ARE A SET OF BRANCHIAL CLEFTS THAT DEVELOP WHILE IN THE WOMB. BETWEEN WEEKS 5 AND 7. BCC ARE FORMED WHEN THERE IS A BIRTH DEFECT WHERE THE CLEFTS DO NOT FUSE TOGETHER CORRECTLY. CYSTS FORM IN THOSE EMPTY SPACES. THE BCC I HAD AND AM PRAYING I DO NOT HAVE AGAIN IS LOCATED DANGEROUSLY CLOSE TO OR INTERTWINED WITH THE FACIAL NERVE. MINE WAS SEVERED IN AN ATTEMPT TO REMOVE THE BCC. RECURRENCE OF THIS THESE CYSTS ARE RARE. BUT THESE CYSTS ARE ALSO EXTREMELY RARE. SO WHAT CAN I SAY ABOUT THAT!?

IT HAS EFFECTED ME MUCH WORSE PSYCHOLOGICALLY THAN IT HAS PHYSICALLY. IT HAS ALSO EFFECTED ME IN SOME WAYS THAT ARE HARD FOR ME TO EXPLAIN. SOMETIMES I WONDER WHO I WOULD BE TODAY IF THIS HAD NOT HAPPENED TO ME. I PRAY EVERY MINUTE OF THESE DAYS THAT I AM HAVING PAIN THAT IT HAS NOT COME BACK. GOD IS TEACHING ME. THAT IS ONE THING THAT I AM SURE OF. HE IS MOLDING ME. I STARTED HAVING PAIN THE LAST FEW DAYS OF SEPTEMBER. NOW IT'S NOV. 9 AND I'M STILL HAVING PAIN. SOME DAYS ARE WORSE THAN OTHERS BUT IT'S ALWAYS THERE. IT'S HARD LIVING WITH PHYSICAL PAIN. IT REALLY IS. IT DOES SOMETHING TO YOU. IT TAKES YOUR ENERGY AWAY. IT TAKES YOUR FOCUS AWAY. IN THESE DAYS IT GIVES ME SOME COMFORT TO DO RESEARCH ABOUT THIS CONDITION. I'M SEARCHING FOR ANSWERS REALLY. BUT THIS CONDITION IS SO RARE THAT IT'S ALMOST IMPOSSIBLE TO FIND OTHER PEOPLE WHO HAVE HAD IT.

LEAVE IT TO ME TO HAVE SOMETHING SO RARE. MAMA ALWAYS SAID THAT I WAS VERY DIFFERENT. I CAN DEFINITELY AGREE WITH THAT!

THROUGH MY PHYSICAL PAIN, I AM TRYING RELENTLESSLY TO STAY PRESENT IN MY MARRIAGE AND AS A MOTHER. I TRY TO FOCUS MY ENERGY TO THOSE THINGS. ONE THING THAT I HATED ABOUT BEING IN SURGERY AND HAVING INFECTED CYST EVERY 2 TO 3 YEARS WAS THE TIME I LOST. I REFUSE TO LOSE TIME WITH THE LOVES OF MY LIFE.

I DON'T KNOW WHY I HAVE TO GO THROUGH THIS. I'M TIRED OF IT. EXHAUSTED OF IT ACTUALLY.

11 years

the past couple of weeks have been quite emotional for me. after 11 years, i had to finally open a deep emotional wound and look at it in all it's glory. 11 years ago i had a surgery that paralyzed half my face, then another surgery to attempt to repair the nerve. if you know anything about nerve damage, it ain't good. so after 11 years, i started having pain. it got so bad that i finally went to the ent to find out that it was tmj. i felt a great deal of relief, emotionally. i had a crying spell from all the anxiety i had built up. not a little wimpy cry but a wailing cry. the dr was great and gave me so much info. no one has ever sat down with me in my adult life to tell me exactly what likely happened to my ear and the cysts behind my ear that were removed. it was like my mind finally stopped spinning.

then a few days later, a soft bump began to form on the back of my ear. right where my cysts were so long ago. i felt a peace. if my pain were a color, it would have been red. it was hot and sore. so i got in touch with the dr. he said for me to come that day bc it looked like an infected cyst. i thought, yea i know. so i went and he said, oh yea! i'm gonna numb that and lance it. boom! instant relief. he was great! it was pretty quick and easy. i was relatively unafraid. my dear friend, mrs. ann, had told me a week ago that i wasn't a little girl anymore and i could handle this, and i did. all by myself in that dr's office. all by myself. i was alone physically, but i know i was not spiritually and emotionally. the way this sickness has affected my family tugs at my heart. my mom was there when i woke up with a paralyzed face, my brother fell silent when told that i was having to have yet another cyst lanced, my daddy is the most loving and caring and tender-hearted man i know...he made me get out of the house and get out into the public when i was physically ready but scared emotionally. and chris, my love, stuck around 11 years ago, and today he has been the one to take care of me. the cleaning and bandaging. he prays that this is not going to become a normal part of our lives. he has hurt for me and prayed for me. he has let me rest on his chest while in pain. my sweet baby girl even watched as her daddy had to change her mama's bandage and reassured me saying, oh mama, it's ok, you're gonna be ok. i am immensely thankful for the people i have in my life.

11 years ago i remained silent. but after living life for these years, i learned to speak up. i have had to tell chris how i feel in a way that he would understand. i've had to open up to a dr about such a terrible time in my life. 11 year old wounds untended grow pretty ugly you know. what an emotional and spiritual journey! my friend at work has taught me and reminded me numerous times that all i have to do is speak His name and He can do anything your heart truly desires. i'm going to start teaching ruby that right now.

some technical things about the cyst behind my ear.

• 2 cysts were located in my salivary gland behind my right ear.
• they became infected at age 6, 9, 11, 14, 17, 20 (a surgery was required for each)
• at age 20 my facial nerve was cut bc the cysts were so deep
• two days after that surgery, i had a nerve repair surgery, and have tremendous results (from the drs have told me when they see me)
• the surgery lasted 8ish hrs and they flapped my entire ear over and had to chisel at the bones in my skull to do the repair. i remember waking up hurting so much with my entire head wrapped in white gauze.
• no more problems for 11 years
• 2015, age 32, small sebaceous cyst infected right under the skin, lanced, drained, wicked, and put on antibiotics. 
• current: on antibiotics and healing. a little sore physically and emotionally.

• this is a diagram of the facial nerve. mine was cut behind and under the ear

• this is the salivary gland behind the ear

i didn't have google and all the devices i have now 11 years ago, so this situation has sparked the researcher in me. i'm waiting on my medical records to come in from jackson. they had to find them in storage. i'm curious to see them.