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…
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…
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…
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…
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…
Morning. Happy Monday!!! It’s freezing in NY. I’m actually wearing a sweatshirt for the third time this entire winter. I am still cold. I might even turn on my bedroom heater for the first time ALL winter. Spring officially begins in like a week. Just goes to show you, you never know with Mother Nature. My older sister lives upstate is expecting like 2 feet of snow tonight. OMG!!! Crazy. I guess this is one of those days I’m happy…
