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.
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
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.
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.
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.
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.
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 18 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,
P.S.: please check out my FB page to get information on the upcoming Sarcoidosis Awareness Month events. http://facebook.com/marilynsfightforlife
Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!
To add along with my excruciating pain in my swollen joints, especially in both hands; now I have broke out in an itchy rash. Oatmeal bath, take me away. The question is, who do I turn to. I owe my dermatologist and I am afraid of them requesting monies that I don’t have prior to seeing me. I know it’s illegal, but the embarrassment is something I can’t handle right now. Where’s publishers clearinghouse when you need them.
Please pray for myself and my family.
At the suggestion of my Rheumatologist that I thought I loved, I found someone who examined me, listened to me, read my chart thoroughly and diagnosed what I kind of already knew. Well, my prednisone prescription was tripled and I am to take, after labs, is a drug that is the next step above methotrexate. Forgot what it was called unfortunately.
Sarcoidosis is now affecting my bones and joints. I called it a long time ago because the pain was extreme, but was told it was the Fibromyalgia or Rheumatoid Arthritis. MRIs and Xrays showed that my lymph nodes were swollen, yet it wasn’t being addressed.
All I ask is for prayers and to all who read this, listen to your heart. If it seems as though you are not being taken seriously, seek out another doctor. Don’t waste your precious time making them rich for doing nothing.