Browsed by
Tag: Multiple sclerosis

A Jamie update

A Jamie update

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…

Read More Read More

Do We Continue MS Disease Therapy Drugs?

Do We Continue MS Disease Therapy Drugs?

I’m faced with a major decision coming up soon. Do I continue taking Rituxan? Not only Rituxan but any disease modifying therapies. I’ve been plagued with infections. I do believe that all of these infections have not only been difficult for me mentally but have played a significant part in the worsening of my symptoms. It’s the age old question, is the MS medication doing anything for me? Are the side effects, lowered immunity, and damage from the intense medication…

Read More Read More

Could Diet and Holistic Medication Cure MS?

Could Diet and Holistic Medication Cure MS?

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…

Read More Read More

Stopping Disease Modifying Therapy Drug

Stopping Disease Modifying Therapy Drug

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…

Read More Read More

Wheelchair Isn’t Only For Transportation

Wheelchair Isn’t Only For Transportation

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…

Read More Read More

My Other Issues

My Other Issues

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…

Read More Read More

Visit From my Friend

Visit From my Friend

Living on Long Island I had the dark yellow color skies due to the Canada wildfires. I felt like I was living in an eerie Stephen King novel. As eerie as my sky was, NYC was still way worse. The sky there was so dark you couldn’t see buildings in front of your face. That is freaking INSANE!!! I immediately wrote to my friend who lives in Montreal. Can you see or breathe? She replied “see, yes, breathe, no”. I…

Read More Read More

I’m writing a blog

I’m writing a blog

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…

Read More Read More

Still have a UTI

Still have a UTI

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…

Read More Read More

What I Wish I Did

What I Wish I Did

I’ve been watching the Deadliest Catch. I would love to be on one of those Alaskan crab boat’s during those crazy weather storms. I would NEVER be a crabber but would LOVE to be in the wheelhouse. I would probably choose the Saga to hang out with Jake. He is one of the younger captains. Yet I find him an honest fisherman who really cares about his crew. Plus I think he’d be a fun hang. I’d also love to…

Read More Read More

Verified by MonsterInsights