12 Years Diagnosed; 23 Year Journey
Hi my name is Karie I am 42 years old and I live in New Jersey, and this is a continuing story. MS is a never ending story to me at least. After having my daughter in 1995 my symptoms started. Thinking it was new mom stuff I never said anything. I noticed hand and arm cramping, insomnia, numbness and tingling, falling a lot, and eye issues. So I began the 10 year journey. I was diagnosed with so many other things, then I found out my dad whom hadn't spoken to me for 15 years lived in Florida, had MS. So I asked my doctor to please send me for a brain MRI they were hesitant but finally did. I was working at the time and had them fax me the results. It was a nursing home facility and I didn't know what demyelinating disease was and asked a doctor and long story short was fired - no i couldn't fight them.
So there it was, the final diagnosis. But the scariest thing I ever went thru. My husband at the time starting drinking more blaming it on me and my MS and the MS was really bad. My daughter couldn't understand why I couldn't get off the couch, she was only 11 and my in laws thought i was faking and being lazy. It was awful. Needless to say I had my mom and that was it. And the depression was painful. So incredibly hard to overcome.
So now it's drug time- here I go. I tried almost every MS drug out there at the time. Started with Copaxone trial. that didn't work out very well. Then to Betaseron which was horrid, the flu-like side effects lasted 24/7 never went away I lived on advil. And painful injection site reactions. So from then until now I tried almost every MS drug out there, IVIG 2 different times, Tysabri, Gilenya, Aubagio, Tecfidera, and LDN. Which LDN worked awesome but got expensive dumb reason to stop. Now I am only on CBD oil medical Marijuana and Gabapentin for pain. I’m sure there is more I just can’t remember right now. At an older age, 15ish, my daughter finally started to understand MS and was one of my biggest supporters!! Then she turned 22 and that is a whole other story...
On this journey I worked on and off. Was in some relationships after my divorce never really picking the right guy and just always scared of what the future held for me. Tried for SSDI several times and got denied. So I tried working again. As my marriage was failing I moved out worked full time and MS got me again. Went out on disability again… So attempted SSDI again…In another long battle, I was finally awarded after eight years of pain and suffering. Now that I have it finally, I feel a bit better knowing my financial future or lack there of but not for anything else. They give me enough to kinda live but not enough to actually live. It’s a double-edged sword.
I have daily pain, my back being the biggest part of my pain. Also terrible fatigue and brain fog. I used to be able to multi task even through my pain now I can’t even take simple directions, its extremely frustrating and scary. My neck shoulders and arms are being badly affected lately for no good reason except MS, it can get so painful then dissipate then its back. My feet and ankles swell for no reason I can pinpoint and it hurts to wear sneakers I usually only wear the cotton UGGs or slides or slippers. Socks ever irritate my feet and ankles most nights and sometimes during the day. The cognitive bothers me the most, and scares me and no one understands if I try to explain. I feel very alone at times because “I LOOK FINE” NO ONE no one gets it even if they are close to me and its so very upsetting and frustrating. I am so tired of even telling anyone anything anymore, that I am tired or in pain or don’t understand something. And as always they wonder why I am sleeping or not going somewhere with them or not doing something I was supposed to. I sometimes wished it was visible. I am just extremely tired of reminding everyone everyday! So I don’t anymore.
I am just trying to live what life I do have and to the fullest that I can. I need a place to live I can afford, which has been next to impossible to find. So now I have an MS navigator getting people to help me which I am very excited about. I hate that I can’t do simple things for myself but I am sure appreciative there are people to help me. I need to alleviate some of the emotional pain right now which one is living with my mom and step dad, and just finally getting a place to call home. When I moved out and got divorced and went on disability again I moved in with my grandfather as he was alone my Nana had just passed away. Then not too long after that he went into a home and I moved in my boyfriend’s house, that turned out to not be a good idea then bopped from my sister to my mom's and finally stayed at my mom's. None of which are ideal places to live, it’s a really hard situation for me and going through moving around so much my 22 yr old daughter driving me crazy, a lot of my symptoms are going crazy too, so I excited to maybe have options I know they are out there I just don’t know how to get to them so looking forward to them helping. None of this and STRESS is good for any of us and going thru all this definitely aggravated the MS. Emotionally I am seeking help thru my church and that has been helping a lot!! I thank God for the friends I’ve made and for the relief I have been feeling. This isn’t an easy journey even if nothing is going on. It’s extremely hard no matter what is or isn’t going on and I pray for help thru this MS journey for me and all my MS friends and family. Xoxo -K
Does your employer provide workplace accommodations due to your MS?