Power story……. Just those words make me wanna run and hide. I imagine a power story to be about a major struggle, and an ultimate victory. I don’t feel like I have had either. However, as I sit here reading other power stories, I realize that every struggle and every victory, big or little, matters. So maybe, just maybe, my story will help or inspire someone else out there.
The last year has been one of the hardest years of my life. I have always been a go, go, go kinda girl. Working 2 jobs, hanging out with friends, traveling and being everyone’s “support beam” (to quote what a great friend once said about me). All at once my life changed, in a big way.
I was first hospitalized in May of 2010 (on my 30th birthday, no less). About 6 days before that I had started experiencing perineal numbness and then 2 days later numbness and tingling started in my feet and eventually (in about 4 days) moved all the way up my legs. Three doctors’ visits later, I ended up in the ER. 1 week, 3 MRIs, 31 vials of blood, and 1 (very painful) lumbar puncture later, I was diagnosed with Transverse Myelitis and told it would take several months to straighten out and would likely never happen again.
Well, I never could do things the easy way. Four months later (to the day) I ended up back in the ER. Symptoms came back and a new one appeared, numbness and tingling in my left arm. More blood work and 2 more MRIs later, it was confirmed, my mother’s worst fear, Multiple Sclerosis. Sept. 9, 2010, I’ll never forget that day. I cannot begin to describe the fear and absolute sadness that went through me. However, I did not have time to dwell. I had too many other wonderful people in my life that needed my comfort and reassurance, even though, to be honest, I had NO IDEA what I was facing. I started going to counseling shortly after my diagnosis. And there I was diagnosed with Major Depressive Disorder – great, one more thing to deal with……
I have had to slow down, BIG TIME. It has been so hard to relearn my limitations, cause let’s face it, I have a whole set of new ones. It is frustrating to get tired after 10 mins of walking through the store. I HATE that I have to walk with a cane. I really hate the days that, no matter how much sleep I get, I am exhausted. I have to tell you though, I have learned some very important things in this past year.
I have learned that I am not super woman (never was, altough I hate to admit it). I have learned that my disease DOES NOT define who I am. I have learned that I have so much more love and support than even I imagined (and believe me when I say, I have a pretty big imagination, and thought I knew how much I was loved). I have learned that when it comes to my treatment and my health I HAVE TO SPEAK UP. And I think, most importantly, I have learned that we all have bad days, and that’s ok. I am not less of person (even though I am a meaner, grumpier person) because of my bad days.
I am doing ok. I have had 2 relapses since my diagnosis and everyday I am getting better at dealing with this life altering illness. I truly believe that God is walking with me every step of the way and that there are lessons to be learned from this, not only for me, but for others around me.
My name is Jaclyn and I am living with MS, and my disease DOES NOT DEFINE ME!!
Jaclyn
New Mexico/Tennessee
Submitted 6-23-11
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Hi, Jaclyn! I have MS myself and was so surprised – delighted, too! – to see that in the relatively short amount of time you’ve had t his crappy disease, you’ve developed a healthy philosophy for coping with it, as well as a strong, reasonable concept of how the disease has impacted who you are. I’ve heard – and it’s been my experience, too – that two of MS’ most frequent “bedfellows” are fatigue and depression. I’ve had my share of both as well, and fatigue seems to be the one symptom which never seems to lessen, at least for me. My diagnosis was back in ’93, and I’ve been taking the injectable meds – Avonex, and then Copaxone – since ’96. I couldn’t agree with you more: It’s a lousy, unwelcome condition, but it doesn’t define who we are…or who we’re becoming. More power to you!
Hi Susan! Thank you for the encouraging words! It has been a hard transition and painful lessons learned. I am so thankful for the wonderful support network I have. It would have been so much harder without them. I have delt with depression my whole life, so that is nothing new, just worse. But the fatigue really bothers me. But I will keep fighting, and I will make the most of my life, even if I have to do it with this crappy disease.
Hello Jaclyn,
I would like to thank you for your story. I found it so inspirational.In October of 2008 I was diagnosed with Progressive MS.I was 32 years old when I had a major “attack”. I had double vision, was unable to walk, had zero cognitive thinking. It was a mess. I had several years before some issues and they saw changes in my brain and said they were due to a long history of Migraines. That my memory nd cognitive problem were results of a complex migraine that could take years to recover from. We had never heard of MS. What a shocker. I have 2 children with auto-immune diseases and alot of medical issues.
This diagnosis makes me very tired, depressed, frustrated. I feel I am somewhat in denial because I can’t slow down or take the time I need for myself because of the kids. I do try saying I have been diagnosed with PMS instead of I have PMS. It is all mind over matter I suppose.
Thank you again for sharing your story. You are a Remarkable woman with great strength!!! Best of luck to you. ~Shilo~
Thank you, Shilo. It has been a struggle for me. I cannot imagine what you must be going through. I do remember the denial part very well. And I still get frustrated with my new limitations, too. I am glad my story was able to inspire you. Best of luck to you!
i know the feeling, 11 years ago , I went numb from the waist down. After quite a few MRI’s, spinal tap, I was diagonsed with MS. I was on Avenox for 5 years, tried Copaxene, had side effects with all, had 1 year of monthly steroids IV, had to stop due to hip pain. I am not taking any monthly meds. I have had no problems, until 3 months ago, I thought I was having a sroke one night, went to the ER, after quite a few test, found out I have a new lesion on my brain. it is so frustrating, everything is going good for 6 years, and bang, it is back. I know that a positive attitude is everything and to just believe. I am tired everyday, but I made myself a promise after I found out that I had ms, that I will keep on fighting, I will not end up in a wheelchair…. good luck to you.
I am a 64 year old female, I was diagnosed of Multiple Sclerosis (MS) in 2008 (MRI), my symptoms started out with severe fatigue, poor balance, numbness, double vision, heat intolerance and anxiety. I was unable to go back to work, I tried Betaseron for about 6 years. Tried every shot available, all made me sick. In November 2023, I started on Multiple Sclerosis (MS) Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my MS condition. I used the Natural MS Herbal formula for a total time period of 3 months, it totally reversed my Multiple Sclerosis. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS.