To the Amazing Husband Behind This Chronically Ill Wife by Samantha Moss

Behind every great man is a great woman, or so the saying goes.
Let’s flip that on its head a little. Behind this chronically ill wife is an amazing husband. A husband who has become a full-time carer. A husband who has gone beyond the call of duty. A husband who has become my legs, my cleaner, my cook, my shopper, my gardener, my driver, my nurse.

A husband who holds my hand when I’m writhing in pain. A husband who heats wheat packs in the middle of the night or makes me a cup of tea in the early hours of the morning, when sleep is completely disturbed by pain.

My husband is nothing short of amazing and I don’t know how, I don’t even want to think about how, my life would be without him by my side.

We share this chronic illness journey, warts and all. He knows me better than anyone else. He can tell when I’m exhausted even before I can. He never complains at this life that has been landed in his lap. He never gets annoyed at me for my limitations. If anything he gets annoyed at me when I try to do things beyond my limitations. That’s when I frustrate him.

It’s a frustration born out of love though. It’s because he knows how much pain I will endure for stretching my limits. He speaks to me of hating what my body is doing to me and how he feels so helpless. That breaks my heart to hear him say that.

Somehow we have managed to create a world of our own that works for us. While it is an extremely limited life, it is also a full and an ever-expanding life. Most of it is spent in the four walls of our home but we are together and we create our own adventures on a daily basis. We laugh and cry together, we read together, we watch our favorite TV shows, we sit in our garden and chat as if on a beautiful date. We share the jobs around the house and keep our environment a place where we want to be.

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We also have our alone time during the day. I have my online support forum and writing commitments and my husband always has a project on the go that he potters with in his “man cave.” Although we usually only spend two or three hours apart each day that time is precious and important, particularly for a carer.

I was recently asked to write on the topic of “Partners – Where would we be without our partners?”

I have a very simple answer to that question. Lost, lonely and in a permanent residential care facility.

Thank you, sweetheart, for all you do, your devotion, care, acceptance of our situation and your unfailing love.

Words really can’t express my love for you but I hope this article will always remind you that I think you are amazing and I love you so much.

Follow Sam’s story at My Medical Musings.

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Photo via michaeljung on Getty Images

Samantha Moss
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Focus Retriever

Cardiac Sarcoidosis

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

❄❄❄❄❄❄❄❄❄❄❄❄❄❄❄❄

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,

MarilynFB_20160731_13_39_14_Saved_Picture

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