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

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.

Happy Anniversary to my Husband Karl

Twenty-seven years and going strong. Throughout all of our trials and tribulations we have grown stronger, loved harder and served a wonderful God. My husband Karl McNeill Sr. is an amazing man and a wonderful father. When I was diagnosed with Sarcoidosis fifteen years ago, he held my hand and said Baby we got this. And I have to say, we are all fighting this together. #SarcoidosisSucks!

Our wedding day

Happy 27th Anniversary

Sarcoidosis Caregiver tip 2 {Reference: SarcoidWarriors.com}

C__Data_Users_DefApps_AppData_INTERNETEXPLORER_Temp_Saved Images_needs_a_cure_2_sarcoidosis_t_shirts_gifts_postcard-r9d09a89e126d4962a3b3d6c42d19407b_vgbaq_8byvr_324Caregiver Tip 2
Posted on January 25, 2015 at 5:34 pm
Sarcoidosis can be a very isolating and extremely lonely disease. Even when we are surrounded by people who love us we can feel so alone and it hurts. When your friend or family member has sarcoidosis there are a wide variety of ways that it can affect them. It diffidently affects our physical bodies and can be crippling and very painful which limits our ability do do all the things we have done in the past and still desperately want to do. Mentally it can cause memory loss and a since of confusion which is frustrating and leads to a loss of confidence in ourselves. Then there is the emotional aspect of Sarcoidosis, this can entail a wide array of issues and a lot of the medication we take can increase these 10 fold.

 

This is where my tip of the day comes in. There is no way for you to fully understand and know how it is to feel the way that we do unless you  have this disease. You can however validate what your friend or family member is going through. It is important for you to validate how they feel physically , mentally as well as emotionally. By doing so you show not only your support but also that you truly care what is happening. It is much easier said than done that you will support someone with a chronic illness such as Sarcoidosis. It can take a toll on you as well as it progresses and new changes and health issues arise. It may get tiring to see and hear about the pain and frustration your loved one is going through but that is when it is most important to validate and show understanding. If you are tired of seeing and hearing about it stop and think of how they must feel living with it.

So often what we are going through and feeling goes dismissed and unheard by even busy medical professional that may or may not even know what this disease is capable of. The general public in our own communities know nothing about it and have never even heard of it. This leave a great sense of despair and frustration and leave the burden of validating what we go through on a daily basis on our friends and family. Fair? maybe not but that is the truth about this disease, it does not even know the word fair. I hope that you understand how important you are in your loved one’s life and in helping, supporting and caring for them. Validating what is going on with them and letting them know it is okay to be feeling the way they do plays a big role in that support and in the outcome of our battle.

Reference:

http://sarcoidwarriors.com/blog/?p=100

 

A Post for my Niece…She runs for her mother and grandmother

Hey there,

I think we can all agree it’s about time to change the course of
cancer. Well, I’m putting my time and money where my mouth is.

I’ve signed up for an endurance race with the American Cancer
Society DetermiNation team. That means every step I take and every
mile I conquer throughout these next few months of training will save
lives and create a world with less cancer and more birthdays.

Why am I telling you all this? I’m hoping you’ll join me
in fighting back against cancer. Don’t worry, you don’t
have to sign up for a race! You can support my efforts by visiting my
personal page and making a donation of whatever amount you can. Your
donation will help the American Cancer Society save lives by helping
people stay well, helping people get well, by finding cures, and by
fighting back.

http://main.acsevents.org/site/TR/DetermiNation/DNFY11National?px=36351794&pg=personal&fr_id=62089

Thanks to the generosity of people like you, 11 million cancer
survivors are celebrating another birthday this year. I’m pretty
excited to be a part of this DetermiNation team – and I’m
grateful to have people like you in my life who care about changing
the course of cancer forever!

Sincerely,
Shemaiah Murphy-Nash

 

Did You Know:
The American Cancer Society provides free temporary lodging to patients
and their caregivers who must travel far from home to get quality
cancer treatment at our Hope Lodge® facilities. To find out if there is
a Hope Lodge in your area, call your American Cancer Society at
1-800-227-2345 or visit

DN Icon 15×15
cancer.org/hopelodge.
http://www.cancer.org/hopelodge

View the American Cancer Society Privacy Policy and State Fundraising
Notices.
http://www.cancer.org/docroot/SU/su_0.asp

http://www.cancer.org/docroot/SU/content/SU_1_6_State_Fundraising_Notices.asp?sitearea=SU

Karl McNeill Sr.

I always feature my children KJ McNeill and Ka’miko so today I wanted to share with you from who their talent flows; the love of my life, Karl McNeill Sr.

1986 Marilyn & Karl Sr.

Back in the day with my hubby. ❤

Karl has been a touring musician for well over 30 years. Having toured with greats like Regina Belle, Bobby Womack, Lou Rawls, MSFB Orchestra and others; my husband put his touring career on hold to stay at home and care for me.  I have said it before, Sarcoidosis does not just affect the patient; it affects the whole family. I have always felt a sense of guilt from taking that life away from him. I do know that it’s not my fault, but for the life of a musician having to succumb to a 9 to 5 is like going to Hell. I have to keep telling myself that God never gives you more than you can bear.

I’ve been with my husband 28 years and married for 25. I love him even more today than I did when we first became one. He’s my husband, father but most importantly, he is my best friend that I could not live without. Thank you God for my blessings.

My husband Karl has been back in the studio with his power team; KJ, Ka’miko, Hadar and Ki’mora-Lynn, grinding out new music and marketing them to producers. You never know, the next big hit you hear might be one from KMSR Enterprises.  

Listen and enjoy two of my favorite songs from my love.  To hear more visit  KMSR Enterprises website at http://kmsrenterprises.webs.com or purchase his music on CDBaby.com:

http://www.cdbaby.com/cd/karlmcneill (Compilation album)

http://www.cdbaby.com/cd/tmwright (Gospel album produced and arrangement by KMSR Enterprises)

 or iTunes:

https://itunes.apple.com/us/album/kmsr-enterprises-artists-compilation/id81981382

http://www.youtube.com/watch?v=tN3mZM-1AqE

http://www.youtube.com/watch?v=0NkoxSPk_qQ

MFL

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

Come join us on April 5, 2014 for our Marilyn’s Fight for Life KICK Sarcoidosis Balloon Release event where KMSR Enterprises and others will be our musical entertainment for the day. Hope to see you there. ^~^

My best friend

image

My best friend who just happens to be my baby sister. Tammie, I love you. Thanks so much for making my day. 😉

Support Sarcoidosis Awareness – RainCloudMom