Hello everyone, for private reasons I will be changing my domain name and logo. I have a temporary logo up now. It’s something I just have to do. I hope the confusion doesn’t cost me any followers. I appreciate each one of you and hope you stick this out with me.
Blogging is so strange. It’s like keeping a private journal while knowing people are sneaking a peek in every entry. I want to be honest and spill out my thoughts and feelings and that has been working out great but, some things are just too private. I’ve always been very private by nature, especially online. I’m only doing this because of ALS. I’ll say again, ALS changes everything.
What can stop me is to protect others I love. This blog is about me and ALS primarily. I let everyone know from the start I wouldn’t write of them without their permission. So when I go days with all my thoughts and energy on someone else, I have nothing much to say. I don’t want this blog to turn into a ~what I had for lunch~ read. When several days are skipped, it’s most likely because my life isn’t all about me or my ALS at that time and I’m dealing with other things that I won’t write about out of respect for people I love. Yes, even with ALS, life continues on with the same stresses and unexpected tragedies. As I progress what I can do to help becomes more and more difficult. Being helpless is a very unpleasant feeling.
While I’m getting things worked out I will give updates on things as often as possible. I did finally make it to the dentist for a cleaning and x-rays. I’m cavity free I’m sure you’re happy to learn. They made accommodations to make it easier to transfer into the dental chair. I’m sure my next visit will be in my power wheelchair. My dentist said any work can be done from there. He has worked with ALS patients and he and his staff were all very supportive. I feel better knowing I have that. Being in late stage and having tooth pain is something I thought of very early on. It’s probably because I had recently dealt with a painful ordeal ending with yet another crown. Crowns still count as my teeth to me. I’ve always feared losing teeth since I was a child. I remember my Mom always saying she wanted every tooth in her mouth her whole life. She has been successful and so have I, so far.
What else? Oh yeah, I’m still waiting on my sip and puff or whatever the correct name is for my Trilogy 100. I’m still looking forward to having that when I just need a little air help. I won’t have to put on any mask. I’ve also been meaning to tell you about the latest mask I have and I love it – The Respironics Wisp Nasal Mask. It’s not a nasal pillow mask, it’s just a nasal mask covering the whole tip of nose, it’s very soft and I have no problem with a seal. No forehead torture and the head gear is the most simple and least invasive I’ve experienced. I highly recommend this mask. I use it occasionally during the day if my nostrils feel sore but it’s mainly for night and I use the mouth guard and chin strap solution I wrote about in the blog post titled ~The Trilogy 100~ to get the benefits of a full face mask. I just can’t handle any of those. They always leak and they are really painful, especially on the forehead. I can also wear any glasses with this mask.
I have big and not so big updates and experiences I’m ready to share. I hope for your patience in getting everything sorted out with the site and other non ALS personal things I’m dealing with.
Until next time, take care,
This article was written by April