My Life with Multiple Sclerosis… I Got This

Life with Multiple Sclerosis...I Got This

By Penelope Conway

No one likes to think about where multiple sclerosis may lead…not even me. But I can tell you from my own experience, ignoring the possibilities of progression is to live in denial and will only set you up for defeat. Trust me, I lived there my first year after diagnosis.

I chose to deny what was happening in my life because I was afraid of the unknown. Continue reading

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The Art of Reflection

By: Meagan Freeman

The start of a new year brings with it the opportunity for each of us to do an internal review, analyzing the things we experienced during the past 12 months. With an illness like MS, we are constantly challenged to evaluate our treatment choices and lifestyle decisions, and this time of year is a wonderful time to do some reflection. How did we feel during the past year? How many relapses occurred? How are we feeling now compared to the previous year? Are there things we would like to change, or are we content with our current state of health?

Life with MS brings constant, daily “fluctuations,” with some symptoms appearing and quickly disappearing, and others seeming to accumulate and resolve very slowly or not at all. I find that looking back over an entire year, comparing full years rather than days, is more helpful in determining whether my treatments are successful. It is important to keep an optimistic attitude despite our condition, and try to see the coming year as a time of opportunity and renewal.

I always like to spend time around January 1st reflecting on the past year; doing a sort of “life review,” and analyzing the success, failures, and learning opportunities. I am always amazed at how many things have changed during the year, and it takes the perspective of time to realize that. Sometimes, we feel that everything is “stuck,” standing still, and no progress is being made. However, if we simply turn back and look at how far we have come, we can see that everything changes.

Often, I hear other MS patients asking why a cure hasn’t been found yet, why it seems that no progress has been made. I would argue, quite the contrary. From a historical perspective, we can see incredible progress. We have come such a long way in our fight against this disease, even though we haven’t quite reached the end of the battle. We have 13 disease modifying drugs in 2016, and in 1992 there were none. Isn’t that a striking statistic? In just over 30 years, MS has gone from being untreatable, to having 13 possible treatment options. Much progress has been made, and we need to try to keep our collective eyes on the finish line, toward the inevitable day that will bring an ultimate cure for this disease. There is much to be hopeful for, and much to be grateful about. Never lose hope, and stay strong knowing that you are never alone. Happy New Year to all!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

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