Today is mahjong. I’m very excited I didn’t play last week. I’ve been very focused in the gym working my core to help me with the forward and backward movements in the game. I can normally make it through 3 1/2 hours of play but I still have issues and fatigue by the end. It isn’t as bad as the beginning when I first started to play. It is amazing what will fatigue the body. If I do a workout…
Back to the gastroenterologist this morning. Unfortunately the medicine Linzess in the current dosage is not doing the job. I’m on the middle dose of 145mg. He wanted to start me at the highest dose and I got nervous. My bad!!!! It seemed to work at first, I was having a bowel movement daily but they became smaller and smaller until it was virtually nothing. Then it stopped altogether. Just stopped. I’m back to not going again. I haven’t for…
Had a great morning, slept late. That is always a good thing. I’ve been tired. I’m always tired, that isn’t anything new. I just needed to sleep. I went into bed at 9 was asleep by 9:30 and slept until after 9AM. That is a good night. I went swimming right after I got up this morning. That is my Fitbit readout. Not a bad workout. Not 100% sure how the lengths are measured but I’ll take a 68 with…
Busy, busy, busy. A fun but busy weekend indeed which is slightly unusual for me. Friday, I was able to babysit, more like keep company, with a little girl who is as sweet as they come and like a niece to me. We had a great day and did so much. We went in the pool, out for lunch, bathed both dogs and even made cookies. It was a jammed packed day and a lot of fun. My dogs were…
I can’t imagine my life without this van. It was time to be in a wheelchair and I didn’t have the means to accomplish this. It took a long time and help from so many people. I still can’t thank them enough. I have a life again and I can go places without everyone worrying; how will I get in, will I be able to get there, will it be too much etc. This van wasn’t only great for me,…
Old Mc Jamie had a twitch eieio with a twitch twitch here and a twitch twitch there here a twitch there a twitch everywhere a twitch twitch Old Mc Jamie has a twitch eieio. It made for a rough night of sleep. It was one of those nights where my medicine just didn’t help through the night. I twitch which is both annoying and uncomfortable and prevents me from falling asleep. I also have my big toe symptom where it…
I have to do bloodwork this morning. You think I’d be a lot less needle phobic with the amount of shots I’ve received over the years but I’m really not. I’ve from the earliest medicine for MS. I’ve been on Avonex, Betaseron, Rebif and even Copaxone. These are all medicines that required weekly or even daily shots that I had to learn to administer myself. For the first 12 years of my journey I had to do these. When Gilenya…
And we’re back, it’s Monday again, doesn’t it seem to happen so fast? I just find the weekends go so quick and I don’t even work anymore. I’m not really complaining because each day is similar for me but on the weekends I’m kind of my own which I generally come to appreciate. I won’t lie, the weekends can be very difficult because no one is usually here. So I lie very very low and usually do very little. I…
My five minutes of fame. 😊. My little write up about how I’ve benefited from the MS Foundation https://msfocus.org/ came out this month. My writing was split on two pages so it was difficult to picture for you to read but I did my best. Pretty neat. First time my words and certainly my picture has ever been published. Btw I’m Jamie from Freeport just in case you missed that part 🙄
You might think that’s great you had no active lesions on your MRI, no new lesions either. Yes, it is but that is a Relapsing Remitting MS signifier that my main MS drug, Rituxan, is suppose to prevent. It is working which is definitely great. The reason I’m not celebrating is because this MRI result is only part of my picture with MS. There is another part, it is thought of as Secondary Progressive MS. Secondary progressive MS (SPMS) is…
