Blessed just at the right moment…

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To have the feeling of loneliness countered by a moment of feeling loved is awesome. In one moment a picture of my elementary school class picture was posted on FB with a message, “Marilyn, I thought you might like this,” Isn’t The Most High wonderful?! To be contacted at that moment of utter loneliness. All of a sudden my DM was hit up with all of my closest friends that I had lost touch with. Now a meeting has been set up for all of them to come visit me for the day. Isn’t that wonderful? Feeling so blessed. 😊😋😊

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

Movie Theatre Nightmare

Theatre: CINEMA CHRISTIANA XD at the Christiana Mall in New Castle County Delaware.

This being the first and the last time I come to this theatre. I am legally handicapped and I purchased four tickets to see the new “Thor” movie. I purchased two seats in the handicapped section, seats C13 and C14, as well as two more seats in row B. There was no other handicapped person in the theatre this night. All present were younger children ages 26 on down. But why was I harassed over and over again about the seat I reserved. Ushers stating that I was in another person’s seat and had to move. Showing my digital receipt over and over again. What did they do, they brought a hard, uncomfortable chair out and asked me to sit in it because I “should have been in a wheelchair.” I use a walker. Why was I singled out. Next to me on my right, a young couple lounged and talked throughout the whole movie. Never was they asked to move. Also, no handicap there unless it was their inability to SHUT UP!!! To my left, a young man sat very comfortably alone. Mind you, no one ever came to sit next to me. I am a married mother treating her husband and the boyfriend of my daughter to a movie of their choosing for their birthday. I hope they enjoy it because I will never do this again. Back to the safety of my home to wait for the movies to become available on cable. This place SUCKS!!!
Cinemark Christiana Mall gets barely 1 star. I will stick to Regal Cinemas at Peoples Plaza.

To take pain medication when in pain or not to???

https://themighty.com/2017/04/pain-medication-fibromyalgia-fear-embarrassment/

In reading this article I hear my children Karl McNeill Jr. and Ka’miko McNeill screaming at me to stop waiting to take my pain medication. I also have heard the labels that are given to those who seek to relieve their pain in the E.R. and before I became a patient I contributed to the ignorance. The truth is, I as a chronic pain sufferer have difficulty taking my pain medication because I do not want to be a statistic. I need my pain meds because I suffer from not just one chronic illness, but three that are very debilitating. I would not function each day if not for the opiods prescribed for me. So to my children, I say thank you for being such wonderful caretakers. But also for just loving me.

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Where is our Sarcoidosis recognition?

Here it is 16 years after my diagnosis and the knowledge of what Sarcoidosis is or where its origin began is still a mystery.  Why is this? I know for a fact that we Warriors are still fighting for our lives. We are still spreading Sarcoidosis awareness throughout our communities and on social media. We are still wearing our purple and holding our events. We are still obtaining proclamations from our governors of state. So what is the hold up? Why aren’t there more specialists out there to treat the many symptoms and problems caused by the disease and the medicines used to treat it? Why are we still not being treated in the emergency rooms across the country properly? Why isn’t there funding to find a cure? The answer is simple. They don’t care because it is not happening to them.  At least that is my opinion. They are not suffering from the debilitating pain. They are not feeling their lives slip away. They are not dealing with the financial strains that the disease brings on the family. They are not dealing with the lengthy and costly misdiagnosis processes. They are not being looked at like they are crazy.

No energy. Tired of being tired. Pain beyond comprehension. Frustration and loss of self. Financial strain. Loss of friends and family who do not get what Sarcoidosis is or what it does to you.

If anyone else has an answer, please tell me.

Peace and blessings,

Marilyn

MFL

United front against Sarcoidosis. We’re fighting for a cure!

 

Sarcoidosis Caregiver tip 2 {Reference: SarcoidWarriors.com}

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Posted on January 25, 2015 at 5:34 pm
Sarcoidosis can be a very isolating and extremely lonely disease. Even when we are surrounded by people who love us we can feel so alone and it hurts. When your friend or family member has sarcoidosis there are a wide variety of ways that it can affect them. It diffidently affects our physical bodies and can be crippling and very painful which limits our ability do do all the things we have done in the past and still desperately want to do. Mentally it can cause memory loss and a since of confusion which is frustrating and leads to a loss of confidence in ourselves. Then there is the emotional aspect of Sarcoidosis, this can entail a wide array of issues and a lot of the medication we take can increase these 10 fold.

 

This is where my tip of the day comes in. There is no way for you to fully understand and know how it is to feel the way that we do unless you  have this disease. You can however validate what your friend or family member is going through. It is important for you to validate how they feel physically , mentally as well as emotionally. By doing so you show not only your support but also that you truly care what is happening. It is much easier said than done that you will support someone with a chronic illness such as Sarcoidosis. It can take a toll on you as well as it progresses and new changes and health issues arise. It may get tiring to see and hear about the pain and frustration your loved one is going through but that is when it is most important to validate and show understanding. If you are tired of seeing and hearing about it stop and think of how they must feel living with it.

So often what we are going through and feeling goes dismissed and unheard by even busy medical professional that may or may not even know what this disease is capable of. The general public in our own communities know nothing about it and have never even heard of it. This leave a great sense of despair and frustration and leave the burden of validating what we go through on a daily basis on our friends and family. Fair? maybe not but that is the truth about this disease, it does not even know the word fair. I hope that you understand how important you are in your loved one’s life and in helping, supporting and caring for them. Validating what is going on with them and letting them know it is okay to be feeling the way they do plays a big role in that support and in the outcome of our battle.

Reference:

http://sarcoidwarriors.com/blog/?p=100

 

New Sarcoidosis information

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

http://www.lifeandbreath.org/living-with-sarcoidosis/treatment