Okay, I hear you saying “you got this”… “no problem”… or the hackneyed, overused phrase “I have MS but it doesn’t have me.”
Yeah, I hear you tough guy/tough gal.
I hear you because I used to say the same. When I was diagnosed back in 1996, I thought MS didn’t know what it was messing with. I didn’t need any help. Didn’t need advice. Didn’t need to talk about it and burden someone else with my belly-aching. Continue reading
Some of us have been in the situation where a loved one has experienced a health problem, a sickness, addiction, or recent medical diagnosis and they are too stubborn or proud to admit this, let alone ask for help. As care partners we feel that it is our responsibility to push them to get help – to remind them about setting up an appointment, or to even try and convince them to go see someone about their situation.
Often someone who may be in denial will Continue reading
As I age, I’m getting more intentional about who I spend time with and how I shape interactions. We can’t always completely avoid people who drain us, but we can shift how we approach our interactions. We can’t always spend enough time with the people we love, but we can shape our relationships to maximize our joy and connection. A lot of our daily lives involve acquaintances who with a small amount of attention can become friends. Our friends and family won’t always have the skills or perspective to meet our needs, but we can find circles of friends who will fill the gaps.
People who drain me: If I can Continue reading
For this month’s featured recipe, we are delighted to highlight a delicious concoction from an MS care partner during MS Awareness Month.
Arlene’s husband David was diagnosed with MS in 1997, seven years after receiving a diagnosis of transverse myelitis that appeared with an attack of acute symptoms. Living on their family’s ranch in Montana with their children and grandchildren nearby, cooking has become Arlene’s art form over the years. She’s grown a greater skill set in this art and has continued sharing several recipes and her family’s story with the MS community.
Our featured recipe is one of Arlene’s favorites to share! This crock pot cream cheese chicken chili recipe Continue reading
As we embark on the second half of MS Awareness Month, we are focusing in on care partners. Care partners can be family, friends and in some cases individuals from agencies or organizations. Being a care partner can not only be a difficult, but also lonely position to be in. Others who have not walked in your shoes will not understand the concerns, questions or struggles that you encounter. They also may not understand Continue reading
It is tough when dealing with MS. You don’t want to be the burden and the boil on someone’s bum. But, you also don’t want to seem stubborn in not asking for help. The winds of MS are blowing at each other. I get it.
Sadly we have to buffer the winds. Bad hair days from those winds are common. Keeping calm in the wind storm is hard. MS is a strong contender. Being calm can help avoid a flare.
Not easy to please others by asking for help, keeping your Continue reading
I woke up this morning thinking about the past five years of my life. I get discouraged sometimes thinking about everything that has happened. I have days when I feel as if multiple sclerosis has flipped my world upside down and inside out. That my life, plans, dreams, and hopes have all changed more than I ever thought possible and I wasn’t prepared for the changes.
Many people go through life wishing they lived a life much like a scene from a movie where everything falls perfectly into place. Where they have Continue reading
Living with a chronic illness is not easy. Living with an invisible disease is not easy. Living with an unpredictable disease is not easy.
Living with MS is hard.
To add insult to injury, I sometimes feel guilty for the extra burden it places on my family and friends.
After my diagnosis I felt like I lost the certainty I believed I had over my health. Of course, none of us has a guarantee with health, but an MS diagnosis definitely Continue reading
In recent years, MSAA and other organizations have adopted the term care partner vs. caregiver to help reflect the grown team approach people use to understand and navigate life with MS. Join us, as we present:
“The Partnership of Care: Redefining Caregiver to Care Partner”
Monday, March 18, 2019
8:00 pm (Eastern)
From helping someone newly diagnosed learn about treatment decisions, to making Continue reading
A friend told me one time that life is war. It is a battle between good and evil a fight between right and wrong. If that is the case, then multiple sclerosis is a beefed-up war on steroids AKA Solu-Medrol. This situation means that you should not go into battle with just anyone by your side.
You should load your ranks with individuals who will Continue reading