My plans for today got ruined thanks to stomach issues. Since I can’t always control the backend chute I couldn’t risk having an accident outside my home. I was supposed to have mahjong today and I’m so bummed I had to cancel. I love playing and look forward to it each week. This would have been very welcome on a Monday replacing physical therapy. I have no problems skipping that. I started today with an “accident”. Right when my aid…
I was talking this morning to my step sister about MS attacks or relapses if you choose. We were talking about someone undiagnosed for years therefore not on any MS disease modification medicine. I told her how lucky I was that I was quickly diagnosed but more so that way back then there was ANY medicine for MS. I strongly believe that if I wasn’t on some kind of medicine I would have been completely disabled within a window of…
I say this all the time, you can’t plan for things because you just don’t know. What doesn’t cause problems one day may be a gigantic obstacle the next day. One day you feel fine the next you can’t get out of bed. People around me always say it’s the weather or may say maybe you’re getting sick, I just know it’s the nature of the disease. A good example is when I was playing mahjong. I’ve had issues many…
Gabapentin is an anti-epileptic used to control some types of seizures in epilepsy. It is used in multiple sclerosis to control dysesthesias (pain caused by MS lesions) and the pain caused by spasticity. (As per the National Multiple Sclerosis Society) I’ve been taking this drug for years. I’ve had it in a wide range of dosages from 100mg to 600mg. Probably about 4 or more years ago my doctor started prescribing me 300mg to take daily. I took them every…
I’ve been having such problems again going to the bathroom. This is an issue I’ve struggled with for years but continues to to get worse. Every time I think I found something that works it eventually stops working. My main problem is twofold. I can’t push and I can’t hold. Meaning I can’t get it out and if it’s coming out I can’t hold it in and I’m going to have an accident. Sorry to be so graphic but is…
I could have spent the day in bed. That’s the one thing two dogs and a nursing aid that comes early in the morning prevents. Not that my aid would mind or wouldn’t help me but my dogs would drive me crazy running between her and me. I can’t shake the exhaustion in the morning and the fatigue in the evening yet. I actually think this started from my rituxan infusion back in mid March, I believe I said I…
As the weather starts to get warmer I start to get more sluggish. It’s beautiful outside and I’m ready for a nap. Yesterday the temperature hit over 60 degrees for the first time, a gorgeous weather day but after physical therapy I was thrilled to be home. I was exhausted. Physical therapy was difficult. My therapist, knowing I hate this answer, said it’s weather changes as always the body has to adjust. Our symptoms get worse than hopefully level off…
It used to take me a long time to accept each stage of MS. Each relapse and each steroid treatment it would take time for my head to get on straight to get better. People use to tell me I was so brave but the truth is, I wasn’t, I was in denial. I tried to pretend it wasn’t happening to the outside world. To my immediate family, especially my mom, I cried and complained often. They heard it all….
Another good day with good news for me. My insurance is covering for a new Hooveround MPV5. I bought my original one used a few years ago and I loved it but it always had issues. First of all it doesn’t drive straight. The chair’s steering was always messed up and to get it to go straight meant I had to steer slightly to the right. Sometimes if I went to fast I zigzagged and ran over peoples feet. The…
I went in my pool yesterday for the first time in almost 4 months. It’s the first time I even swam since the middle of January when I was away. My elevator was broken for so long and it is my elevator that is attached to the building with the pool. For me in my wheelchair, I have to go outside to get to the pool when my elevator is broken because otherwise there are steps. Other people wouldn’t have…
