I try to do the safe things, I really do. Even when I’m trying to be at my safest I still have issues. Let’s take last night as an example. My dad called as I was about to go to the ladies room, so I told him I’d call him back in a minute. On my way back, i safely maneuver my wheelchair directly in front of my comfy chair to make my transfer. Easy and safe. As I was…
I truly want to write happy, uplifting blogs but I haven’t been able to do that lately. For every good day I’ve been having a few rough days following. It seems like I’ve been having more rough days than good days. Each time I think I’m through the worst of it, like my infusion, something seems to happen. If it is a tough night sleeping or a great night sleeping, I’m waking up tired. Doesn’t seem to matter. Today I…
Yesterday was so rough. Like complete physical exhaustion rough. Wishing I didn’t have to use the bathroom rough. Each time I had to get up was so much effort. Is this still from the infusion? Or is this from the weather change? We’ve had some crazy weather changes over the last week in New York. One day it was 70° then all of a sudden it dropped to 50° I actually had the heat on one day. I was bundled…
I think I’m through the worst of the infusion side effects now, more or less. I didn’t have the greatest weekend. By the end of the days my legs felt very weak. I did sleep on my chair both nights. Thankfully I did because Saturday night, without my water pill, I was still up every two hours to use the bathroom. My legs would have been too weak to get me up and down into my bed. I made the…
I called the pharmacy first thing this morning and they reassured me that my Rituxan will be delivered first thing tomorrow morning. I am not going to call my infusion nurse and I’m going to hope for the best. Normally my infusions don’t go smoothly. There always seems to be a problem somewhere through the process. When the pharmacy changed I thought, great another infusion to give me agitation. Then it was all arranged weeks in advance. I was shocked….
There’s been a lot going on this week and I’m not sure where to begin. After being traumatized this weekend, it was hard for me to even focus on everything that was happening, and a lot was happening. My new aide started on Monday, I got an OT evaluation to start that twice a week in the house, and Mikayla left. I’m also going for a urologist appointment on Friday to discuss the Botox in the bladder. I haven’t decided…
What I don’t understand is how are you supposed to prevent things from happening? If there was something I could’ve done, I would’ve done it. What is a person with a disability supposed to do when they are alone? I just can’t understand how this situation not only could’ve been prevented but could’ve been done with any dignity whatsoever. This is the part of multiple sclerosis that I find so unfair. The embarrassment and the shame that I felt is…
I could write about my horrific Saturday night and Sunday morning I will write about it, eventually. I honestly am completely traumatized by the events that took placed. Yet I will tell the tale because i promised when I started this blog complete honesty. However I am just not ready to retake the tale yet. That’s how bad it was. So instead I’m going to leave you with a video that my dad sent me Perfect video for a great…
My daughter is packing because she’s leaving today not tomorrow. My aide of three years had her last day with me yesterday. My new aide starts Monday and is working 11-7. Not exactly the hours I wanted to change them too but it is still is better than my original hours. I can now do my normal morning routine. I prefer working out when no one is around. I always did. Now I’ll have the morning to myself. What could…
Amazon’s been promoting shark week on discovery channel for a while now. However, now the promo is Tyson versus jaws, rumble on the reef. Is this really what we’ve lowered ourselves to? I actually like shark week. They’ve actually had some really interesting programs. I think my stepdad’s told me it is the longest running cable event in history. Do really need to be promoting it alongside Mike Tyson in his boxing gloves? OK, maybe it’s just me. It is…
