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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TEAM K.I.S.S. DE 5K RUN/WALK 2017

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Register here for FSRs TEAM K.I.S.S. DE 5K Run/Walk

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 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,

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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

 

 

New Sarcoidosis Information Site (provided by FSR)

This is a great site and also it provides templates for Sarcoidosis pamphlets that we can use at our awareness events this month.

http://www.chestnet.org/Foundation/Patient-Education-Resources/Sarcoidosis?utm_source=alisonpartners&utm_medium=online&utm_campaign=sarcoidosis

Also, here is a reminder for my upcoming event. Remember to R.S.V.P. to marilynsfightforlife@live.com. Also, T-shirts will be available to purchase on that day.

MFFL Event Poster 2015

MFFL Event Poster 2015

MFFL T-ShirtThank you all and have a blessed day.

Marilyn McNeill – Founder

Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign

phone: (302) 521-2816

email: marilynsfightforlife@live.com

Facebook page: http://facebook.com/marilynsfightforlife

A Little Update, and a Good Article About Auto-Immune Disease

The Professional Patient

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.

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An Inspire.com Post that I had to share… “STAND UP FOR SARCOIDOSIS AWARENESS: PURPLE POWER” by MZBIGGREDD

Stand Up For Sarcoidosis Awareness

We have two options, medically and emotionally: give up, or fight like hell. Unite for one, unite for all. After a Sarcoidosis diagnosis — whether it’s your own or that of a loved one — the right information can be one of your most powerful weapons. Sarcoidosis is often misunderstood, there are many misconceptions about this disease. But education is the best defense. Finding a cure is our goal, spreading awareness plays a role. A brighter future for all we all secure, if everyday we keep seeking a cure. As long as we have HOPE and each other to help us cope, we all can be better together.

Sarcoidosis didn’t stop me from being me, it helped me find who I am and what I want to do with my life. Time is shortening. But every day that I challenge this Sarcoidosis and all of it’s unwelcoming friends and I survive, is a victory for me. A person has 1000 wishes. A Sarcoidosis patient has one, “To Get BETTER.” Once you choose HOPE, anything’s possible. People will never truly understand what it is to fight like hell to win a battle. Not until they are faced with the words, you have Sarcoidosis.

Thousands of individuals are diagnosed with Sarcoidosis. Even those who aren’t stricken with the heart of the illness are touched in some way by the deadly disease. Sarcoidosis is something that will show how strong or weak a family, relationships and friendships really are.

“Dear Sarcoidosis, we as Warrior’s are stronger than you. You may be winning the battle but we are determined to win the war. For many Sarcoidosis comes with a lifelong battle, just like life. It comes with battle against a life threatening disease, when life is a continuous battle against the restrictions set by fear and hopelessness. It comes with life altering conditions that may shatter your world to the core. But while Sarcoidosis is a word, it is not a sentence “

Next time you feel yourself getting annoyed about your bad hair and nail day, bad traffic, shitty bosses, and screaming kids, just remember there’s somebody going through a flare-up, indescribable pain, weight gain, hair loss, loss of breath, severe depression who would welcome and gladly trade places with you. Pain is nothing new to many Sarcoidosis patients. Of all life-altering disease, Sarcoidosis is one of those which subjects patients not only to a wide range of painful and exhausting symptoms but also to a wide range of emotions.

Sometimes in our lives we reach rock bottom. We experience what we call HELL. For each of us it’s dressed up differently, but for all of us it is dark, tough and devastating. This HELL can be our awakening. Some people call it a breakdown; I believe it is a breakthrough. Being diagnosed with Sarcoidosis comes with a lot of uncertainties. It comes with a baggage that is bound to test your very character. Sarcoidosis is not the end of your life; it actually marks a new beginning. You should not let this disease rule over your life. It has to be fought, not feared. It can be handled and it can be battled with. Many people have done it, many people have survived it, and so can you. The main message Sarcoidosis patients is to convince you that You Are NOT Alone in this fight.

Sarcoidosis has threatened many lives. But must it remain a threat? Succumbing to this threat will only make you a slave of fear, fear for your life. The thing is that you can fight Sarcoidosis, no matter what form it shows up in. People have done it and do it every day. It may be a very serious disease but on the other side, spending your life with this disease allows you to realize how fragile and precious life can be.

So please keep in mind that Sarcoidosis is not a joke, so don’t treat it like it’s one. Fighting today for the chance of a cure tomorrow. Many of us may be in some form Disabled … But don’t for one minute get it twisted for we are very well Enabled! While everyone’s journey is unique, knowing that others before you have been through something similar can give you the strength encouragement motivation and inspiration you need to keep everything in perspective. We are NOT just Thriving, We are Surviving and Purple is our signature color! Life – A Race Worth Fighting For!

Purple Power!!!

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email : Webview : The Devastating Impact of Sarcoidosis

email : Webview : The Devastating Impact of Sarcoidosis.