For anyone that has pain with your multiple sclerosis or pain with any other disorder, I honestly have a lot of sympathy for you. I experienced a spasm that caused so much pain I couldn’t even move. It started as what I call an indigestion bubble. You ever get that gas bubble that travels trough your body and it can be painful. I always have to try to move or stretch for it to go away. Lately it has been…
I’m still here. I have kept the blog. I know it’s been a long time since I have written anything but I have to admit I haven’t had much to say. My life is very quiet now. I choose it to be that way. I find it easier. I still workout in the mornings but I now do it only 5 days a week. I’m still obsessed with Bionic Gym. However, I spend the majority of my day in my…
I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my immune system we are once…
Hello, yes, I’m still here. I’m actually doing ok. Nothing has changed. I’m still dealing with UTIs and GI issues but they’ve been improving. I have season 2 of Alone playing in the background. The episode I am on has 4 people left. One of the participants is a woman with multiple sclerosis. I didn’t start watching because of this woman, just dumb luck. Anyway she is 45. She said 15 years ago she couldn’t walk, was on all this…
I had a conversation this morning with my neurologist. This was my specialist in NYC however I did have the conversation with my other neurologist last month. It is on a topic we have been questioning with every UTI I’ve dealt with since April. Is it worth continuing suppressing my immune system anymore? I have certainly not been stable on Rituxan. Part was due to the pneumonia, can’t blame Rituxan on that decline. However, over the last year, I have…
So I have to say I’ve never been so happy to have my chair. Who knew that I would have missed my chair so much. I am not one who usually spreads love to Kit, my main wheelchair. I probably spend more time cursing at some misfunction or slow maneuver. However, I never realized how much this chair did for me until I didn’t have it for 2+ months. I don’t think I’ll be cursing my chair anytime soon. Sitting…
Today my wheelchair is supposed to be picked up. They will be taking my chair back to the shop to fix. I find it amazing that they can afford to send a courier to pickup the chair but can’t send a technician out to repair the chair. The company is so short staffed that the cost of the courier service outweighs sending a repairman. I have my wheelchair evaluation on July 25th. It is at this appointment I will find…
I keep meaning to write. I have every intention. Then at the end of the day, I realize I didn’t write again. Normally I actually write my blog the day before but since WordPress had an update, I schedule the blog but it never posts. I finally got annoyed and stopped writing the day before and then stopped writing on the day. So here I am. I would love to say so much has happened since I last wrote, but…
Hello to all!!! I am still fighting the good fight here. I just got back my second urine culture which showed positive still for an infection. Yet at the bottom in this one little line is >=3 organisms probable collection contamination. Well how is that possible??? I know we got a clean sample from the source. The only thing is that my aide didn’t fully tighten the lid to the sample cup. The urine leaked out a little into the…
Hello again. I’m on a roll now. So it was official, lab confirmed, a UTI. I saw my doctor last week. This could have become a dangerous situation for me. I could have wound up once again in the hospital needing IV antibiotics. I could have even ended up septic if the bacteria got into my bloodstream. It is how elderly can die from a UTI. It is when UTI symptoms aren’t realized and the infection goes undetected. My body…
