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.
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
This is a great site and also it provides templates for Sarcoidosis pamphlets that we can use at our awareness events this month.
Also, here is a reminder for my upcoming event. Remember to R.S.V.P. to firstname.lastname@example.org. Also, T-shirts will be available to purchase on that day.
Marilyn McNeill – Founder
Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign
phone: (302) 521-2816
Facebook page: http://facebook.com/marilynsfightforlife
This summer has been the summer of medical procedures and surgeries for me. Last Thursday and Friday marked my fifth and sixth minor surgeries of the summer, and since then my body appears to have gone on vacation. No matter what I ask it to do, and no matter how nicely I ask it, my body will not cooperate. I am hoping that in the next few days I will regain some ability to sleep and take care of myself and my wounds. Sometime after that I will be able to start thinking about blogging in earnest again. Expect a mid-month Real Post.
Thank you for all you bring to my life, dear readers. I appreciate that you give me your audience and support. As a thanks, I leave you with a thought-provoking article on auto-immune disease and the tale of one person’s quest to get answers and get better.