Welcome to My MonSter

Hello everyone! My name is Amy and I was diagnosed with RRMS in 2009. I worked in the medical field most of my life, first as a CNA, then as a group home manager/care provider. I have had other jobs throughout but in 2007 I decided to return to health care.

I noticed that I sweated a lot, like I had run a major marathon and that was from walking down the hall picking up dinner trays. I also had a bad burning and awful pain in my feet. I was tired all the time, even on a cpap machine, with plenty of rest and taking my time doing things. I dropped things, felt weak, had tingling in my hands and felt like things were crawling under my skin. I would forget things that were not that easily forgotten and even part of my routine. My moods were up and down all the time. I had no desire to do anything and had to force myself to do them. My neck and shoulders killed me when I tried to do paperwork and things on the computer or just peeling potatoes. I had some incontinence issues as well, I would get the urge to pee and before I could get to a bathroom I was doing the gotta go right now walk. It was very frustrating for me, my neurologist put restrictions on my job that were nearly impossible as a nurse’s aide, so they tried to find me something else to do and were not able to, therefore I lost my job.

I have not worked in about 7 yrs now and I really want to try to work part time. My meds caused me to gain weight, well didn’t help with the issues I already had so I had gastric sleeve surgery last May. I hope it would help with some of my symptoms and it actually did, I got off the diabetic meds, the cholesterol meds, the only thing it didn’t help was the sleep apnea which apparently is hereditary. I have also recently decided that I want to try to go back to school, but I don’t know about that one… without financial aid it won’t happen, but that’s okay because I have decided to take Tai Chi or something to that effect.

In march I celebrated my 25th wedding anniversary and last June I became a grandma of a beautiful little girl, then my grandson was born in January of this year.

I have decided that I will not let my MonSter win no matter what.I am hoping to participate in an MS walk sometime this year. I am happy to give advice if I can and would love to do some volunteering. My husband is a truck driver and being by myself is bad because then I have too much time to think.

I have tried several MS treatments, even participated in a Gilenya study. Nothing seems to help for long so I am currently doing Rituxan therapy. It helps up until about a month before my next infusion then I start being really blah and I hate it. I want to do things but I just don’t have the energy and forcing myself only makes me suffer.

I can’t seem to get my youngest son and his girlfriend to understand that I am tired, I rarely see my granddaughter and when they do come over they stay for 15 min and leave. They live 45 minutes away but that seems like a 4 hour drive when you are already tired and pushing it. It breaks my heart but I try not to dwell on it, my grandson and his parents live with us so I see my little man all the time. I just wish I could be with my little angel more. They won’t allow us or even her parents to take her anywhere without them, at least not until she learns to talk. It is what it is I guess, and I don’t feel like they should put the lack of time we spend on us…her family all live close. Even holidays are spent with them first.

I have two little dogs that I adore and keep me busy. They are my fur babies and my best friends. I wouldn’t give them up for anything.

My husband is my rock even though he isn’t here, he checks on me and when he is home he won’t let me do anything. I am blessed in with the support I do have, I just wish I could get everyone to see what things are like through my eyes.

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