Thank you for visiting my blog.
I’m Karen, born and raised in New York. I’m proud to call Staten Island, New York (one of the five boroughs that make up N.Y.C.) my home for the past five decades. I’m Mom to my beautiful 37 year old son and Mom to five dogs. Three Pugs, a Puggle, and a Morkie. I worked in Manhattan (as us Staten Islanders say) for a computer company and a major financial institution before changing direction and becoming a N.Y.S. Certified Emergency Medical Technician and later working at a skilled nursing and rehabilitation center prior to being diagnosed with Multiple Sclerosis. I was an Alzheimer’s caregiver for over a decade. My entire life changed last year when I lost my Mom and Brother one week apart.
I love music. I love going to concerts. Recently, well, right before the pandemic I went to the Celine Dion concert. It was on my bucket list! The year before Billy Joel, YES, and Melissa Etheridge. I enjoy everything from the Fugees to the Bee Gees and attend throwback 80’s disco concerts.
About that ms: I originally sought medical attention in 2011 at the age of 44 for excruciating neuropathic pain, heavy legs, extreme fatigue, bladder issues, and so on. I had gone to just about every specialist there is including urology, hematology, gynecology, rheumatology, and neurology in a desperate search to find the cause of my symptoms and naturally a cure (ha!) I underwent major surgery, bladder procedures, and even a lymph node removal. It was actually a neurosurgeon who I visited for my “spine and leg pain” that was the first to tell me it looked like ms which led me to about three different neurologists who all said, “this doesn’t look like ms”. It didn’t look like ms because it was progressive ms. Progressive ms presents differently. One of the Neurologists did suggest a spinal tap as he stated it doesn’t look like ms. Well if he doesn’t think it’s ms I’m not having a spinal tap I said to myself. I left and never had the spinal tap. Why would I? It doesn’t look like ms! At one point a very good friend asked me, “how many doctors are you going to go to”? I was devastated. I went on with my life. Fatigued and in pain, I had to give up a job I loved with no explanation. During the Fall of 2016 my eye became painful and twitched for three weeks non-stop. An ER visit and a CT scan ruled out a stroke. I was diagnosed with bells palsy (still have the crooked smile) and discharged. Later I learned that CT scans do not show Multiple Sclerosis. Again, I went on with my life. In 2017 I lost all feeling on the left side of my body, facial paralysis (I can’t feel my face to this day), and non-stop muscle twitching including my eye again. Stupidly, I went back to the Neurologist I had seen in 2011. Stress. That’s what he said. I left there in tears and called a different Neurologist from my car. It would be a one month wait. Okay, I said.
“This is not stress” the second Neurologist adamantly stated. And I could breathe. For the first time in six years someone heard me. This dramatic series of events led to the diagnosis of Multiple Sclerosis. At the age of 51 ms was attacking my brainstem. After reviewing my brain mri’s going back to 2011 it was determined I had ms since then.
One year after originally being diagnosed with relapsing remitting ms I was diagnosed with progressive relapsing multiple sclerosis which affects only 5% of people who have ms. Some Neurologists no longer use this term, however, mine did.
Six years to get a diagnosis.
While I do experience the insidious nature of progression, I have not had any relapses or mri activity since 2017.
I created this blog to raise awareness through sharing my story. Although most everyone has heard about ms, I realized not everyone is aware of the different types of ms. I’m not the typical ms patient. Diagnosed later in life and I have the progressive form of the disease. I hope by sharing the struggles and the victories it may help someone else not feel alone. I hope to encourage and spread hope that life is still worth living and a good life!
I enjoy writing about different things. I mean how much can you “talk” about an incurable neurological disease? Life goes on.
Has life changed since diagnosis?
I discovered a passion for fitness. Three years ago I started weight training and it’s completely changed my life. It has helped me manage if not eliminate the fatigue and spasticity that accompanies this disease as well as the depression and anxiety that goes along with having your brain attacked.
Because I’m no longer able to run or walk long distances, I started jumping rope and it feels AMAZING! It’s not only good cardio, it’s helped me with coordination, spatial awareness and it’s FUN! I’m trying new things!
I went back to school and became a certified professional life coach.
I fostered and adopted a very special senior (diabetic) dog which I thought I probably would never be able to do again after diagnosis. There’s so many unknowns when newly diagnosed. I’m currently fostering another very special dog, a paralyzed dog.
My blog is named in honor of this guy, my very first Pug. It’s a euphemism for F–K you ms! This little Pug has been by my side for thirteen years. He sat on the couch with me for a year when I couldn’t move. There’s such comfort in an old friend.
Don’t get me wrong, ms is not easy. Some days are grueling. I refuse to let it define me or dictate my life. I have deficits and challenges. I also have a strength I never knew I had and maybe that’s the gift.
A diagnosis of Multiple Sclerosis is not the end of the world.