Where Is My Relief?

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Waking up in pain everyday isn’t how I envisioned my life to be. Diagnosed 18 years ago and been living debilitating pain that no one could possibly handle on their own. Prescribed medicine’s do not work for my good. They just caused more problems, more pain.

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Waking up in pain is not what I envisioned my married life would be. I hurt because I can’t be the wife that my hubby Karl needs. Instead of me taking care of him, he instead takes care of me. Causing an extra burden to be placed on his shoulders because of my stupid illness hurts my heart. Watching him age before my eyes. Saddening. Hurtful. Regretful. Sorrowful. In his eyes he loves me and I am thankful. Karl honors our vows to each other. Honestly, that speaks volumes to his character. Cares for me like no other. He is a blessed man of The Most High that was created just for me. I am blessed because he chose me. Selah

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Waking up in pain each day is not what I envisioned my life as a parent to be. Diagnosed when my children were 12, 9 and 2 months respectively. Just babies themselves having to take on the role of caretaker to their own mother. Missing out on a lot because of me. Having one resent me because of it. Missing out on caring for the baby a lot because of the pain. They are 30 (KJ), 27 (Ka’miko Mai’) and 18 (Kimora-Lynn) now and I can truly say I am blessed that they chose me as mom from heaven. They make me fight each day to live. Even with the pain, I could not have made it this far without them. There are many others in my shoes that do not have the support system that I have and I pray for them everyday. But I am so thankful that my family loves me and stays in my corner. The Most High seen favor with me and blessed me with another daughter. My daughter Hadar, KJs wife, not only loves me but she is also an active advocate for me and Sarcoidosis. She helps me with my health choices and also with my life. She educates others about Sarcoidosis, making them understand what I struggle with everyday. She loves me and that is such a blessing.

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Chronic pain, living with Sarcoidosis, living with an Invisible illness, living with an incurable debilitating disease and finally, living with a rare disease; this is my life. I fight through the pain, I smile through the pain, I live through the pain.

Peace and blessings to you always Warrior’s.

 

RE: MOVIE NIGHTMARE @ Cinemark Christiana Movie Theatre Pt. 2

 


This is a follow-up to the Cinemark Christiana Movie Theatre debacle.

I called the theatre the next morning after being humiliated the night before and spoke to a representative who intern stated that I would be receiving a call from their manager (Stephanie) on Monday. Well that didn’t happen. I called this evening around 4:30 pm and actually spoke to Stephanie herself. After explaining to her how I was treated, she told me “where I was wrong.” She said that I, indeed was sitting in someone else’s seat.? Wrong! I understood the meaning of reserved handicapped seating and I was indeed sitting in a seat that I had reserved. Stephanie also stated that they sat those that was supposed to sit in our seats elsewhere, and that the usher was supposed to tell us this. NOT! LIES BEGAT LIES BEGAT LIES! Stephanie then went on to say that I had no right to raise my voice to her. I rebutted with, why Not? You are not listening to what I am trying to explain to you about what actually happened. She then apologized for her staff not alerting me to reassigning the other moviegoers Stephanie promised me a refund, in which I was prepared to give her my confirmation number so that it could be reimbursed to my card. Stephanie said that was not possible and that I had to come back to the movie theater and show her my digital receipt. Again reiterating that it would be hard for me to do so tonight because of my disability, so may I email it to her. Of course she said no. Stating that I must present the ticket in person in order to receive my refund out of their petty cash fund due to the ticket being purchased via Fandango. She said that it would be okay to send a copy of the ticket with my husband. Stephanie stated, “that if she was not there, then she would leave word with the other managers to refund my money. Hubby went there and the staff denied our refund. A manager named Carlos specifically, spoke very negatively to hubby.
I am venting this because I already deal with being handicapped because of Sarcoidosis and what it has done to my life, but to be humiliated when I was in the right for sitting in a seat designated for the handicapped. Especially, when being asked to move for those who were not. #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SarcoidosisAwareness #LivingWithChronicPain #TheRightsOfTheHandicap #Fighting4OurRights #MistreatmentOfTheHandicapped

TEAM K.I.S.S. -DE 5K RUN/WALK

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My best friend

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My best friend who just happens to be my baby sister. Tammie, I love you. Thanks so much for making my day. 😉

Support Sarcoidosis Awareness – RainCloudMom

Feeling melancholy…

Lately I have been missing my sisters a lot. Crying uncontrollably until I have to use my inhaler to breathe.  My daughter’s try to calm me down, but they know that their aunties meant a lot to me.

Missing my ability to pick up the phone to call my sister’s Leah, Zipporah and Dinah so much that my heart hurts. People don’t understand that Dinah and I were each others support system while facing life with a debilitating illnesses.

Although I miss them all dearly, I miss them for different reasons. My sister Leah was like my second mother. She kept all of us in check. Leah was there whenever, wherever you needed her. I remember her visits to my homes both in New Jersey and here in Delaware. We always had so much fun. When I was diagnosed with Sarcoidosis, I believe she took it the hardest. She is responsible for me meeting my husband and she reminded me of that event all the time. She adopted a lot of my husbands peers as little brothers and would provide them with a home cooked meal at least once a week. For them, she along with my parents, meant the world.  They would drive up from South Jersey or wherever they were to visit my mom and Leah.  Leah, Dinah and Zipporah were all creative and could build or fix whatever they set their hands. Zipporah was our beauty queen, just like her daughter’s are today.  She left us first in 1993.  That took a toll on my whole family.  Most of all, that is when I noticed changes in my health.  I started school to become an R.N. after her passing because I wanted the knowledge and ability to make sure that nobody left us like that again.  My funniest memory of her was during the birth of her daughter Kamiah.  Zipporah made sure that her hair was in place, her makeup was intact and the birthing process was Oscar worthy. ^~^ Now Dinah was our go to sister. Wise beyond her years in life lessons, music and education. She was the one responsible for all of our childrens understanding about the importance of getting a great education. Dinah was their first teacher even without earning a degree herself. I give her all the credit for my son KJ being able to speak, read and write before he turned three. He was accepted to a mentally gifted school at the age of three to start kindergarten at four. KJ surprised the top educators in New Jersey by being able to read at a fifth grade level at three.  She is also one of his role models for his vast knowledge of music. Dinah was also our comedian. We always said that she missed her calling.  She could do impersonations and do card tricks.  She kept us laughing til we were in tears. Can you see why I miss them?

Now I feel lonely because they are gone. There are days I forget and pick up the phone to call them only to remember that they aren’t here anymore. My sister’s Tammie and Judy, and my brother Joel are my hearts and they are all I have now.  Karl Sr., KJ, Ka’miko, Kimora-Lynn and Hadar, don’t think I discount your love.  Please God, I pray for their continued life, health and strength. I can’t lose anybody else.

My mother

Hard time sleeping. Thinking and praying all night for my mother who was admitted to the hospital last night to the I.C.U. Family, Cloud family and Sarc family; I ask for prayers.