Skip to main content

Posts

Summer Heat and the MonSter

What do you do when heat exhaustion and the MonSter don’t mix? It's that time of year. You know what I mean. The sun is shining, bikinis are on sale, coolers are loaded, and summer invitations are distributed. Unfortunately, a majority of MS Warriors face the disappointing reality of being inside looking out. According to a May 2022 study by the National Library of Medicine, between 60% to 80% of patients with multiple sclerosis (MS) exhibit Uhthoff’s phenomenon with heat exposure. Uhthoff’s Phenomenon (also known as Uhthoff sign or Uhthoff syndrome) is described as  a transient worsening of neurological symptoms related to a demyelinating disorder such as multiple sclerosis when the body becomes overheated in hot weather, exercise, fever, saunas, or hot tubs. I know. That’s a mouth full and likely not to resonate with, well, just about anyone. Severe intolerance to heat is one more reason MS Warriors are misunderstood. We're not whining. Our world is just so difficult to expla
Recent posts

In my Daily Life with MS, the more we learn, the more we know

In my Daily Life with MS, the more we learn, the more we know https://www.youtube.com/watch?v=fgIsUiT2dug According to legend, if you say the name Beetlejuice three times fast,  the magical trickster himself will appear before you. Let’s reverse that.  Wouldn’t it be great if we could say MS three times fast to erase the existence of this ridiculous disease? I'm pretty tired of my personal trickster. Since the Monster refuses to be exorcised, the best thing we can do for ourselves is to learn more about it. Pushing aside the negativity of multiple sclerosis, its history is kind of fascinating. As recently as the 1950s (in the realm of history, that really is recent; or I’m really old), they subjected people exhibiting inexplicable neurological symptoms to inhumane “cures”. Photo by  Gabriella Clare Marino  on  Unsplash The MonSter was first detected as early as 1300, but not assigned a label until the 1800s when the medical field recognized the mysterious symptoms of MS a nervous d

Water Works

Photo by  Joe Zlomek  on  Unsplash Incontinence. I know I talk about it a lot. It’s something I stress over every day. A friend of mine used the word incontinence once to describe a strange physical symptom she experienced. Because of her habitual hypochondriac tendencies, I really thought little of it. We were impressionable college students looking for  IT . Cheers to the  IT  we never found. Fast-forward too many years: I have had to learn to deal with many humiliations since D-Day, but this is the most alarming. When the word popped up again upon diagnosis, I immediately cringed in sympathy for anyone who experienced such a degrading, animalistic situation. And then I realized I HAD experienced incontinence and thought it was because of a UTI, for which I was prone. It is not uncommon for me to not quite make it to the toilet on time or even recognize the urgency of the need. In the early days with the MonSter, and even now, I am not comfortable in strange settings if I haven’t loc

Stop Feeling Guilty about being You

STOP FEELING GUILTY about being you. Photo by  Lubo Minar  on  Unsplash MS Warriors are like a fragile plant, struggling to rise from the earth to be recognized in the world. We require nurturing to survive. Unfortunately, that nurturing is of our own creation. Talk about pressure! If you’re like me, sometimes it’s a chore to stand upright in the morning; and there is no amount of external caregiving that can help. We handle our own welfare. I spent this weekend at a writer's conference where my creative juices were rejuvenated. The array of speakers and shared writing information fueled my passion for a craft dear to my heart. Following a day of intense presentations on Saturday, most of the participants gathered “on the porch” for fellowship, storytelling, and maybe a little West Virginia moonshine. From my lodge room bed, I could hear their joy outside the window. I wanted so badly to join them, but my body was done for the day. My spoon supply spent, I felt sad and guilty for n