Have a Magical Day

Hurrica2018-bright-celebrate-230898ne Florence tried to screw with my bucket list. She caused the closure of Disney’s Hilton Head Resort. Related or unrelated to the trip, I had a PBA episode over communication issues so we drove back home ready to let ALS ruin another part of our lives. But instead of ruining the trip, Disney and our hospice representatives managed to move our trip up a few days and now I am comfortably situated in Disney’s Old Key West resort. Those lemons make for a great lemonade, thank you Disney and Duke Hospice for taking care of the big and small details.

We were able to make a short visit with friends from our former church in Hasbrouck Heights, NJ. My PBA kicked in so I didn’t have much fun and I couldn’t get in the house because as all PALs know, a flat entry is never really flat and no one wants to take off the door moulding trying to get in someone’s home.

I spent the first day hanging around the hotel. It’s harder for me to drive the wheelchair now, but we are looking at a possible solution. The second day was a great day. We met with some friends who relocated to Florida. Of course, we had to move inside because Tobii Dynavox does not work outside. Funny how that is is not part of the sales pitch.
Have any PALS come up with a solution for that?

Besides being able to visit with friends, the rest of the trip has been a nightmare for me. I am now stranded in Florida because part of I-95 have been shut down. This was supposed to be my Goodbye trip to Mickey and Minnie and it was not a memorable one. The trip was a nightmare that will not be repeated by me. I know that I should have stayed home. They say you should go with your gut feeling. I guess I should start listening to my gut and stop being so agreeable to other people’s idea of what is fun for me. I only have myself to blame for not being more forceful.

So the lesson to myself is just say no. I would prefer doing something else.

Wonder Woman

So the other night I posted on Facebook that I felt like this could be my last blog. Things are getting difficult now. Can’t get my Toby to do what I want. Can’t find a bed to operate by eyegaze (a/k/a eye tracking) or some other person who can change the remote so I can sync it with bed to make it work with eyegaze technology. I feel more tired lately, I don’t know if it is the new medication, dissatisfaction with getting my device to work according to instructions (which is frustrating), or just ALS hitting on me now.

So, I have been wondering about a lot of things lately.

1) I wonder why some people visit one time, promise to come back, and are never heard from again. When you make a promise to a dying person, they don’t forget.

2) I wonder how many people actually read my blog and how many just click like on Facebook.

3) I wonder how many blog readers have taken the time to find out what ALS really is all about.

4) I wonder sometimes how a family can be so F’ed up that they can’t say “I’m sorry,” or tell you why they are angry.

5) I wonder what it takes to have to deal with these issues when you are dying. When you are looking death in the face, you can wonder about a lot of things. Not all of it is good.

I once read a sign on someone’s property that said Friends are our True Family,. At the time it shocked me to see the sign, especially when you are leaving a relative’s home. But I saw the true meaning behind that message when my mom passed and those relatives did not show up. I know all families have their own horror stories and that mine are not
unique, but I could probably write a book about it and it would be a bestseller.

So I don’t know how often you will see a blog post from me or if they will just be shorter. I believe I wrote on Facebook that I was really only telling you 90% of my true story. So I will throw in a few teasers about my full 100% story:

A) The hospice nurse just left. We called because I was very uncomfortable and felt like I had to take a wicked pee. I felt that something was wrong with my Foley catheter. There was. She worked her magic and the urine came flowing out. If you have ever popped a zit, you will understand the feeling of relief you get. Well, that might not be the best example, but it’s all I got right now.

B) The other day I had diarrhea so bad that I had to cancel a friend’s visit. They give you some really strong laxatives when you can’t go. The laxative is better than the alternative method and believe me I’ve had it done. My husband had to do it, and he was pretty good. It put me on the right track. And that laxative – wow. It filled the bed pan to the top.  the clean up was a long ordeal.

Picture 68


C) I have never smoked but recently took up vaping! Actually it’s a nebulizer to help me get all the crap out of me that you can simply cough up

So how do you like hearing what it is really like to have ALS? It’s about the same amount of fun my husband and caregiver has everyday along with his usual daily breakdown watching me slowly slip away.


AML. AML, Joseph