For someone that has to rely on opiates to experience a somewhat “normal” life. The only problem is that I have to supplement my diet with a lot of fiber and various laxatives, including teas each day. It can become very costly. My major concern is the side effects that all of these have on my body as a whole. I feel overly bloated when I am unable to relieve myself; and once I do, I feel dehydrated, drained of all my energy and empty. That’s a good thing right? LOL 😉 But am I loosing necessary vitamins and minerals needed to sustain my life. Well, I found an article that hopefully answers all of my questions and also those that are from you as well. Click on the link below for the article.

Peace and blessings to you all,

Marilyn a.k.a. Lynn or Mommielynn

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Digestive Disorders/Bowel Transit Time

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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 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

 

 

Am I paranoid or what?

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Well here’s the problem, my baby girl has been running a low grade fever for the last couple of days with a headache. Her body aches too. Now not to long ago she was a passenger in a car that was involved in an accident. She was rushed to the emergency room and diagnosed with a mild concussion, neck sprain, bruised sternum and ribs. She stayed home for two days as instructed by the ER doctor and then returned to school. Her neck stayed stiff and sore. I am contacting the physical therapist tomorrow to get her started but I am wondering if she needs to go back to the doctor. Because I have been battling Sarcoidosis for sixteen years, I am paranoid about my children not recieving the testing to rule out them from being misdiagnosed like I was. Am I paranoid or just concerned? I just don’t want my children to hurt. Just the mommy in me I guess.

Until next time, peace and blessings to all and please be safe during this holiday season.

Marilyn

http://stopsarcoidosis.org/donate

http://gofundme.com/marilynsfight4life

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 Sarcoidosis Warrior Cry for Help

MFL

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

People who know me know that I rarely ask for anything unless I am truly desperate. This campaign is very important to me and I have reached out to friends and family for help. Well, I have not received the help I was expecting so I don’t know what to think. This is why there is a need for this campaign. People do not understand how Sarcoidosis affects our lives and that there is a need for awareness and education about Sarcoidosis.

This disease is very debilitating and has left me dependent on oxygen support to breathe. It has me relying on my family’s support and help with little things that many take for granted like combing my hair or helping to get dressed. There is a definite need for research to find a cure. Many patients and their families are fighting for media attention, government attention and medical attention everyday.

What this all boils down to is that I am again asking for donations to help with my campaign to spread awareness about this disease. Please click on the link below and donate today.

https://www.indiegogo.com/projects/marilyn-s-fight-for-life-kick-sarcoidosis-campaign

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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A Must Read about Sarcoidosis and Relapses

This is the most recent report on “Relapses of Sarcoidosis”.  A must read…

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http://www.ersj.org.uk/content/43/2/337.full.pdf+html