My next infusion is supposed to be in a few weeks for the full dosage of Rituxan. I called the infusion place that does the schedule for my medicine yesterday hoping to get a jump on things and avoid any issues. This time, for the first time, there shouldn’t be any problems. I haven’t had any insurance changes, Rituxan has already been approved from the last time and I’ve been getting my infusion with this place for a few years…
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…
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…
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…
July is ending today. I made it through the month. Only one more long month of summer to go and I should be good. It’s just these two months that are difficult for me the other 10 I can get through. However I’m still jealous of my little sister in San Francisco with that perfect mid 70’s weather year round. That would be perfect. Anyway I can celebrate successfully navigating another month of July. This was an uneventful month which…
A great way to spend the day. I have an MRI of the head and cervical spine with and without contrast. This is a long test and I have to be there 45 minutes BEFORE my appointment on top of the long test. That is for them to put in a line making it easier to add the dye during the test. Since I’m known for collapsing veins during this part, I’ll be there early. Neither of my neurologist expect…
I woke this morning with my twitches. It started up by my pelvic/hip area on the left side getting this feeling of an electric pulse. That pulse then traveled down my leg causing instant paralysis and flexing all the way to my toe. Then it stopped and released until the next pulse hit. They came every 10 minutes until I finally got up because sleeping wasn’t happening anymore. I take all my medicine at night so I can stop any…
