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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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.

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

 

 

Raising Funds for Upcoming Sarcoidosis Event

Hi everyone,

I am currently raising funds for my Sarcoidosis event by selling some beautiful jewelry items and also T-Shirts. If you are interested in purchasing, please email me and I will provide a link to my PayPal account.

I have healing crystals in both clear and purple on sterling silver chains, available in both 18″ and 20″ for $14.99 each:

Also available are amethyst healing stones on an 18″ gold overlay chain for $10.99 each:

 

I also have beautiful white crystals and purple crystals bracelets available for $4.99 each:

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White and purple crystal bracelets

Aren’t these charming? They are purple leather love wrap bracelets for $4.99:

Next we have sterling silver chokers with a iridescent snowflake charm for $9.99 each:

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Sterling silver necklace choker’s with iridescent snowflake charms.

As always we have my Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign T-Shirts for $25.00 each:

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Available for a limited time are these sterling silver 16″ chains with a cute Sarcoidosis ribbon charm for $9.99 each:

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Sterling silver 16″ chain with Sarcoidosis ribbon charm

If anything interests you, please contact me via email: marilynsfightforlife@live.com

Peace and Blessings everyone,

Marilyn

 

Sarcoidosis Awareness Month 2016

April has been deemed nationally as Sarcoidosis Awareness Month around the country. Please help me to spread awareness and educate the masses about this debilitating and deadly disease.  There is so much misinformation out there and people need to know that we are dying waiting for a cure. Please read:

http://1drv.ms/21Mndmp

 

A time of reflection…

Psalms 91:2

I will say of the Lord, he is my refuge and my fortress: my God, in him I will trust.