Happy Birthday Hubby ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ

20170515_230002The love of my life is celebrating his birthday today. This man has a heart of gold and a giving soul. He is the epitome of a man of The Most High, letting his light shine so that others may see The Most High in him. Those that know Karl or come in contact with him see how humble he is with the gift of music that The Most High has blessed him with. He has taught those that went on to become the best they can be in the business without expecting thank you’s or any form of recognition from them. I think of the story of Joseph when I see my husband in action. You get what I am saying? Well today I celebrate with the man that The Most High has blessed me with and celebrate his excellence.

I love you so much Karl McNeill Sr. I love you now and forever more.

Wifey

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.ย 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!ย 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

True Emotions

The Might: Dealing With Anxiety and Depression by Stephanie Roberts

 

I have to admit that I sometimes share the exact emotions as the author Stephanie Roberts has shared in her article post on The Mighty.

I try to remain a positive person and know that God has me, but sometimes your mind begins to wonder and those what ifs come into existence. I thank God everyday for my family stepping up to the plate as my caretakers. It is an overwhelming tasks. Just like this author expresses about all of the specialists visits and the times when I thought that I could prepare dinner only to have them wondering what they were going to eat later. Many days and nights I lock myself in the bathroom and cry because I don’t want them to worry as much, but they do because I can’t hide anything from them. They know about my mannerisms when I try to mask the pain. They know… I feel so sad for my husband because in spite of his own very painful leg due to an injury and his own medical condition, he still helps me with my everyday situations. I love him to death. My baby girl Kimora-Lynn has never seen me a day or night without pain. I was diagnosed right after she was born almost 18 yrs. ago. She doesn’t express her emotions to anyone. If she does then it is like an explosion all at once. She holds everything in. Not good.  I know. My two older children express their emotions through music. They are very talented lyricist, vocalist’s, producers and most importantly, multi-instrumentalist like their father. I am proud of them but they wear their emotions on their sleeve which can be dangerous. My son once argued with one of my old doctors because the doctor made a derogatory comment about my weight. I was on 60 mg of prednisone at the time. That was my last visit with that doctor. These are the things one deals with when you have both a very rare disease that is not known to almost all medical and human knowledge, it is more than most misdiagnosed, under funded federally and under researched.  Most of the time I have to educate those who I go to for care about the symptoms and problems caused by Sarcoidosis, Rheumatoid Arthritis and Fibromyalgia.

So this month is Sarcoidosis Awareness Month and I am advocating it to the fullest whenever I can. My hopes is that I can obtain at least a $500 donation goal towards a cure. Either through participation in my upcoming Team K.I.S.S. DE 5k 2017 Run/Walk for a cure or my Marilyn’s Fight for Life KICK Sarcoidosis Campaign’s fundraising page via the Foundation of Sarcoidosis Research. All monies go to funding for research and it’s tax deductible. I like to thank all those who have registered so far and also those who have hopes to register or just contribute. Thank you from the bottom of my heart.

So in conclusion I say to all of my Warrior’s, cry, blog, express any way you can about your emotions and what you are feeling truly and hopefully you will feel better in the long run.

This explains me to a “T”

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I Smile Through My Pain??!!

I am getting sick and tired of smiling through my damn pain. I am really upset right now at whomever came up with that concept. WTF!!! When you are Fake, do not get upset if you do not receive the understanding and compassion that you desire. There is a saying that a lie begets a lie begets a lie. Meaning that the lie you tell keeps on building up the more you tell it and sooner or later that lie is gonna bite you in the ass.

What I am feeling right now is very lonely. Why? Because in the mist of all of my confusion of trying not to let on how much pain I am in, so as not to worry my family, a misunderstand intrudes. Just a simple conversation seems to always makes me feel like anything that I say will be the wrong thing. What I mean is that because of this stupid debilitating disease I am by myself 97% of the time, not discounting my two dogs as my only company. No one calls from my family except for one niece and my immediate family is so busy working and going to school that they barely have time for me. So at that one chance moment that we do come together as a family, it’s like whatever I say is the wrong thing. Don’t get me wrong. I know my family loves me, but I don’t think they get how lonely I have been for almost 18ย yrs. There is no date nights for my husband and myself because we are barely getting by financially. Sometimes we go without food or I can not afford my very needed medication to live. I have been hospitalized three times in the last five months because of this. What does that say to you? The first was for pneumonia and congestive heart failure. That stay was for 2 1/2 weeks. The next was for the onset of a GI Virus in which I was the only one in the family to be affected. Whilst there I suddenly lost all feeling and mobility on my right side. I was diagnosed, after an MRI of my brain, with a Lucanar stroke. My stay this time was for 1 week and was discharged with PT and a home nurse. While undergoing PT in my 3rd week my BP spiked to 200/150 and where I had gained my mobility by 50%, I had another stroke. Another week in the hospital, but this time I was discharged with PT/OT and a home nurse. They also provided me with a social worker who helped me obtain my monthly meds.

So getting back to my earlier point, I am the number one advocate for positivity with other Warrior’s and I truly try to remain positive myself, but answer me this: How can you maintain positivity within yourself when you lack understanding about how you can be happy by yourself?

Peace & blessings to everyone who takes the time to read this,

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P.S.: please check out my FB page to get information on the upcoming Sarcoidosis Awareness Month events. http://facebook.com/marilynsfightforlife

 

 

After The Scare

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I really hate Sarcoidosis! This dis-ease has taken through many trials and tribulations over the last sixteen years. From being diagnosed in my lungs via a bronchioscopy and being scared to death each time I visited the doctor’s office thereafter. Every doctor asked if I was told how long I was told I was going to live to “you bet you should’ve never smoked.” The thing is, I never did. Next while participating in a clinical trial for a drug call Remicade back in 2001 at the University of Pennsylvania Hospital; Sarcoidosis attacked my sinuses. This resulted in three sinus surgeries and the loss of two of my senses; taste and smell. Later it has attacked my blood, bones, skin and eyes in no chronological order. Now, after an 11 day stint in the hospital after being admitted with congested heart failure and pneumonia, my blood pressures are hard to regulate. Went in with the first reading of 200/115. Scary as you know what. I was also told the my potassium and magnesium levels were dangerously depleted and I had to be admitted if I didn’t want to die. My family took it very hard and stayed with me after being admitted until 3 a.m. We cried, prayed and strategized because that’s what we do. I absolutely love my husband and children. So now what’s being said is that they believe that the Sarcoidosis is attacking my heart which is causing the irregularities in my blood pressures. I am on so many different meds for my blood pressure. One in particular, Hydralazine, causes severe headaches sometimes after I take it. So this brings me back to the title, after the scare of congested heart failure I am fighting for my life with a vengeance now. I want to live a long healthy life. My goal is to eventually get off of these meds and find a way to build my lungs back up to wean off of the continuous Oxygen. So all I ask is for prayers for a healthy recovery please.

As always, peace and blessings to you all. Until next time be healthy, happy and please support Sarcoidosis Awareness by donating via http://stopsarcoidosis.org.