I can’t believe it’s been six months already. Well I guess it has because all my reminders went off. Actually about a week after my last infusion I started receiving phone calls to set up my appointment. It was crazy. Actually I thought CVS specialty pharmacy was crazy. I never used them for my Rituxan or my Ocrevus so I was so confused why they kept calling me. Sure enough another change with my insurance. Great, because those have always…
I went to the urologist on Friday to discuss Botox in the bladder.The last of the week trip to urologist Botox for the bladder. What a genuinely honest and patient doctor this was. He came in and knew that I needed questions answered and was prepared to sit and talk. Not only was that nice of a doctor in general but it was nice of a doctor during these times with Covid. He was very honest when he answered and…
I put up a permanent link to the MS gym on my homepage. I really encourage anyone with any disability to check this out. I have no affiliation with the gym. I’m not making any money. I really have put up this link because I honestly feel this is an amazing website. I’ve been doing one of the programs now for about 8 weeks and I’ve seen a difference. that’s a big deal. I’ve had MS for 22 years. It’s…
It’s Friday, this was such a long week I am very happy to be here. I couldn’t imagine having to work. I’m dreading driving and I only have to go down the block today. This week has definitely been an abnormal week for me. Starting with my traumatizing weekend The horrible weekend tale. Multiple Sclerosis at it’s worst, A new aid My new aide, PT therapy Occupational therapy in my home and today is the urologist. Compared to other weeks,…
I’m very happy to report that my new aide is extremely nice, has been helpful but most importantly likes my dogs. If the person couldn’t get along with my dogs then they couldn’t get along with me. It’s only been three days now compared to my last aide of 3 years so of course there is an adjustment. Thankfully, it is not at all as difficult as I thought it could be. She lives with her sister and brother very…
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…
I’m doing a lot better with my new wheelchair now. I don’t love everything about the chair but I am consistently using it now. It turns horribly, I hate that. It is also difficult if you maneuver wrong and hit a wall. You can’t just do a simple correction. You have to move forward or back still hitting the wall to maneuver yourself off the wall, if that makes sense. The wheels that move this chair are in the middle…
