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…
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…
Good morning everyone. So, looks like my latest stretch of the last few weeks of suffering might be due to a UTI. Even though we are still waiting on the lab results, my doctor prescribed me antibiotics yesterday. However, when the culture does come back, we might have to change antibiotics based on the strain. I should’ve known. I can’t feel that area anymore yet my aide has said my urine has NOT been clear for a while now. I’ve…
Did you ever watch the cartoon The Jetson’s? You know meet George Jetson ?,his boy Elroy, his daughter Judy, Jane his wife ?. They were the futuristic family that drove the cars that flew in the sky. It was their phone that I was thinking about lately. They would get a call and it was always on this monitor. You would see the person that they were talking to. I remember thinking this was such a cool thing. Granted I…
I have to say this cold has kicked the shit out of me. I know taking Rituxan lowers my immune system but I honestly very rarely get sick. Even my issues in 2022 I was on Kesimpta, not Rituxan. The last cold I had was back in 2019 when I went on my last vacation. I went to Mexico with my family. I had the worst cold. I was miserable for the first 4 days of the week’s vacation. I…
It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…
I am half way through my Rituxan infusion. Chilling out watching Ink Master. I was smart this morning. I kept my arms covered despite being slightly warm. I know, all too well, that my cold arms do not help when trying to start an IV. I overheat so easily so there is usually a fan blowing right next to me. I might not feel cold but my arms and hands are always cold to touch. I kept a sweatshirt on…
I’ve been absent again. I have just had a lousy few weeks. I have had a shitty year. If you have read my blog, I have that well documented. I’m tired of dealing with all the issues that keep occurring week in and week out. I just feel like I have not had one month where I wasn’t dealing with some issues. From sickness to bedbugs back to my chronic stomach issues, I honestly feel like I can’t catch a…
I’m sneezing. My first cold of the year. I have been taking my oregano oil for a few days. It has probably helped but it hasn’t stopped the cold like it has in the past. I think things are just not affecting me the same since my whole pneumonia debacle. Oregano oil use to knock out anything as soon as I felt the twinge. Now I feel like it doesn’t do the trick. I’m not use to actually feeling run…
