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Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!
My name is Marilyn McNeill and for the last 14 years has battled a debilitating disease known as Sarcoidosis.
April is Nationally acknowledged as Sarcoidosis Awareness Month and I am hosting our very first annual Kick Sarcoidosis Balloon Release Event on April 5, 2014 at 4pm sharp in New Castle, DE. We have hopes to provide our Delaware Sarcoidosis patients and families, friends and supporters; an afternoon of food, fun and entertainment. For more information or if you are interested in attending, email me at: firstname.lastname@example.org.
We are looking for vendors and anyone who would like to offer their services ie, massage, beauty, etc… This is in hopes to help those with Sarcoidosis to forget about their pain for just one day. Wouldn’t you like to help?
*I posted this back in May of 2013 and I decided that I would re-post it again. I truly want to thank the original author of this piece because it speaks to all of us that suffer with chronic illnesses.*
To love someone with a chronic illness is to be a doctor. It means helping them to remember their medications. It means driving for an hour to the only 24 hour pharmacy when your local Walgreen’s does not have the medication they need. It means helping them to know when their normal symptoms turn into something serious that requires more attention. It means driving them to the emergency room in the middle of the night, holding their hand in countless waiting rooms, talking with their doctors, and knowing their diseases almost as well as they do. To love someone with a chronic illness is to be patient. It means knowing that some days they won’t feel good and there will be no visible reason. It means canceling long term plans when suddenly they don’t feel well enough to go on a trip. It means waiting to go to bed while they do their night-time medication routine. It means knowing that preparing to leave the house, for any reason, can be a time-consuming ordeal. To love someone with a chronic illness is to be a counselor. It means consoling them when they’re tired and feel like they can’t do it anymore. It means listening while they try to figure out their new diagnosis and medications, and not passing judgment if they make mistakes. Or, during those tough times, listening to their burial wishes – just in case. To love someone with a chronic illness is to be a guardian. It means standing up for them when strangers accuse them of being a drug addict. It means discreetly asking their friends to keep an eye on them when they are testing new medications and don’t know the reactions to their body yet. It means defending them when doctors dismiss new symptoms. It means making explanations to family and friends when you have to cancel plans at the last minute. To love someone with a chronic illness is to not be superficial. It means seeing their bruises as beauty marks. It means seeing their scars as evidence of strength and survival. It means kissing their dry lips when they are hooked to IVs. It means learning to look past the mobility aids and medical equipment and being attracted to the person behind it all. To love someone with a chronic illness is to be smart. It means investigating new medications, even though they never asked you to. It means listening to them explain their research findings in terms that aren’t “normal” language. It means knowing how to make them smile when they desperately wants to scream. To love someone with a chronic illness is to be selfless. It means going to a restaurant based off a menu that fits their dietary needs, and planning dates around their limitations. It means going without when money is tight so that you can buy their medication instead. It means learning how much more difficult normal daily activities are for them, and scheduling your time around their time. To love someone with a chronic illness is to be brave. It means keeping your chin up while they talk about those scary, painful moments. It means keeping a positive attitude even though all of the websites tell you that their life expectancy will be far too short. To love someone with a chronic illness is not easy. It means putting their medical needs before any other finances. It means worrying every moment whether or not they are okay, especially when you aren’t with them. It means trusting their life in the hands of so many doctors who do not know them, or love them, like you do.
Thank you for loving someone with a chronic illness.
Family pic 2013
* My family is awesome. They have me and Mom Akiko to look after. God bless them and may heaven smile upon them. That truly is my prayer. I love you guys so very much and could not fight this fight without you. Thank you also to my sister’s Judy, Tammie and Deanie. Your prayers and support have gotten me thus far. My big brothers Joel, Paul and Carl; thank you for your guidance and words of wisdom. My nieces and nephews; I love you from the bottom of my heart to the depths of my soul. Cloud USA Sisters; thank you for your laughter and for being there. Block-A-Holics; thank you for making me smile. My extended family of the Murphy’s; I am truly blessed to be born of this family. God is truly AMAZING!^+^ I know this battle is not mines alone. *
FSR public service announcement featuring Bill Russell.