Written by Mandy on Wednesday, September 24th, 2008 in Emotional Issues, Family, Links, Symptoms.
“Don’t worry, I’ll rally before then.”
“You’d better hurry up and get better, we’ve got that trip coming up.”
“I’m sure I’ll be getting better now… I’ve got so much to do next week.”
Even as we speak the words, we know how meaningless they are, but MS plays mind games in our house.
Does MS play mind games in YOUR house? Read the rest of our story here.
Written by Mandy on Monday, September 22nd, 2008 in Emotional Issues, Links, Symptoms.
Hello. Allow me to introduce myself. I am MS; that’s short for multiple sclerosis.
ABOUT ME:
I enjoy tricking your body into attacking its own myelin, the material that protects the nerve fibers in your central nervous system. I know I’ve done a good job when the signals traveling through your CNS are interrupted, causing all manner of crazy symptoms, from simple numbness and tingling to paralysis or blindness. I manage to hold off medical intervention for as long as possible by masking symptoms, and even disappearing altogether for long stretches of time. For sport, I sometimes masquerade as other diseases. By the time of diagnosis, many patients have had their sanity questioned.
Written by Mandy on Friday, September 12th, 2008 in In The News, Links, Symptoms.
I was surprised to meet up with a train on my visit to a local shopping mall. I was even more surprised to find that I was supposed to give it the right of way. Life with multiple sclerosis can be strange and complicated.
Written by Mandy on Tuesday, September 9th, 2008 in Links, Symptoms.
Life at the office can get interesting when you bring MS to work.
Tuesday, it was, “Wow… can’t believe you came in!”
Wednesday, it was, “Hey, you’re still lookin’ good!”
Thursday, it was, “You look like Tim Conway.”
Written by Mandy on Tuesday, September 2nd, 2008 in In The News, Links, Symptoms.
I like to smile and laugh. I like the people around me to feel good and I do attempt to hide symptoms sometimes. I do that because I don’t want to invite sympathy or questions. I do that because I need time off from it all. But I am unable to hide my symptoms from all of the people all of the time, or even some of the people all of the time.
The the rest of my story here:
Written by Mandy on Monday, September 1st, 2008 in Emotional Issues, Symptoms.
Wow! MS really got the best of me today. I awoke feeling as though my limbs belong to someone else — maybe that’s why they won’t do what I tell them. About the only skill I have today is working this keyboard. Thankfully, my fingers are still on the job!
To top it all off, I have a migraine as well. Just further proof that when it rains… it pours.
Will I go to work tomorrow? It’s not looking good at all.
This is one of those days when having MS has really gotten to me. I apologized to Jake for how I look today and for all the chores that won’t get done. I hate when I do that. He knows it’s not my fault and so do I. Guilt is just one of those side effects of MS.
Maybe tomorrow will be better!
Written by Mandy on Tuesday, July 22nd, 2008 in Emotional Issues, Links, Symptoms.
Marriam-Webster OnLine defines the word disabled as: “incapacitated by illness or injury; also : physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education”
Am I disabled? Are you? The definition sounds fairly cut and dry, but when I try to apply it to my own life, things get a little fuzzy.
Written by Mandy on Wednesday, July 16th, 2008 in Emotional Issues, Links, Symptoms.
It’s the foot wiggle. That’s my MS “tell.”
I’m not talking about the big changes brought about by MS. I’m talking about the tiny, seemingly insignificant things.
Written by Mandy on Tuesday, July 8th, 2008 in Links, Symptoms.
The recent sharepost by Dr. Gross, “Fatigue and Sleepiness in Multiple Sclerosis”, couldn’t have come at a better time for me. After a month of high energy, I just recently began to slide back into the clutches of fatigue. The first day that it hit again, I tried to ignore it, even though I felt as though my body weight had tripled. The second day, I couldn’t ignore it, but I tried to pretend that it wasn’t so. By the third day, fatigue was winning. Sitting at my keyboard around 3:00 p.m., I felt my eyes closing even while I continued to type. My head seemed so much heavier than my neck could possibly hold, and the fog came rolling in. I thought I’d just lie down for a moment. I didn’t even recall my head hitting the pillow when I woke up t…
You can read the rest of this SharePost by visiting:
Did Rip Van Winkle Have MS?
Written by Mandy on Monday, June 30th, 2008 in Caregiver's Corner, Emotional Issues, Family, Links, Symptoms.
“What do you mean ‘You can’t see.’!?,” I asked. We were speeding north through Maryland on Interstate 81 heading to NJ for a family weekend. Mandy was a little quiet and, when I glanced over, I saw real fear on her face. In a slightly panicked voice, she said that for the past 15 minutes she had strange wavy lines coming in and out of her field of vision. They had started appearing towards the peripheral areas. Now those lines were obstructing everything and, in places, shutting out vision altogether. With a mix of terror and confusion, she looked at me and said that there was a big hole in my head. I was stunned into silence. Continue…
Written by Mandy on Monday, April 7th, 2008 in Doctors, Links, Symptoms.
So, are you crazy? Imagining things? Faking? Just looking for attention? You know what a multiple sclerosis exacerbation is, but what does it mean when your doctor tells you that you are having a ‘pseudo’ exacerbation?Merriam-Webster’s Online Dictionary defines the word ‘pseudo’ as:
Being apparently, rather than actually, as stated: sham, spurious
Don’t let the word get you down. Your doctor is not accusing you of being a sham. In this case, pseudo has a very different meaning.
Written by Mandy on Wednesday, April 2nd, 2008 in Doctors, Emotional Issues, Family, Links, Symptoms.
Detective Ferguson climbs tentatively to the top of the step-ladder. Nervous and perspiring, he is completely overwhelmed when he reaches the third step. His fear of heights manifests itself in the form of dizziness and he collapses in a near-faint. Alfred Hitchcock’s 1958 classic thriller, “Vertigo,” starring James Stewart, uses unique camera angles and imagery to capture the fear of heights as never before. There is one small problem with that. Vertigo is NOT fear of heights. Until recently, I, along with many other people, drew my knowledge of the subject from that movie. Just further proof that life does not imitate art.
Two things happened upon hearing her neurologist at Johns Hopkins utter the words “This is MS” while examining the MRI films of her brain. First, there was a feeling of exoneration. We weren’t crazy. All the inexplicable on-and-off-again symptoms that were plaguing Mandy had their roots in an actual, true-to-life disease. Then the other shoe dropped and we froze. Though we were afraid to say it aloud, we each thought the same thing – ‘what now?’
Written by Mandy on Friday, March 28th, 2008 in General, Links, Symptoms.
Relapsing/remitting multiple sclerosis, the most common form of MS at onset, is often likened to a roller coaster ride because of its characteristic ups and downs. I often write about the relapsing portion of the equation, but how about the remitting part? Walks in the park, a little puttering in the backyard and taking care of those long-neglected tasks around the house come naturally now. Spontaneity and enthusiasm rule the day. These moments are few and far between, but oh, so cherished!
Read more…
Written by Mandy on Monday, March 24th, 2008 in Emotional Issues, Family, Links, Symptoms.
My purpose in taking you through the process of MS… from initial symptoms to eventual diagnosis is simple — I want you to buy into the life. I want you to consider, on a gut level, not my life, but yours… and how it can be turned completely inside out when either you or someone you love says simply, “Hmm, my arm feels funny.”
Read: Part III, The Rabbit Hole
Spring, with its spirit of renewal, uplifts the heart and mind. Not far behind spring come the hot, humid days of summer. We all know the rules of summer. Limit exposure to the sun, drink plenty of fluids, wear sunglasses and use a high SPF sunblock. Multiple sclerosis patients have one additional thing to keep in mind. The heat.
Written by Mandy on Friday, March 21st, 2008 in Emotional Issues, Links, Symptoms.
While at work, someone commented on how different I seem this week. How happy and bubbly. There’s a swing in my step. I definitely seem more approachable. I started to wonder how that could be. Along with my relapsing/remitting MS, do I also have relapsing/remitting personality? Why do I suddenly experience personality surges? Then it hit me. They are not observing something new in me, but something missing in me. Fatigue.
