Recently someone remarked that my blog has gone on to religious topics, and how was I doing? And I said to myself, “Self, they are right, I’ve done a really bad job documenting this time in between!” So thank you for keeping me in line, and here’s what’s been going on!
As well a special thanks to everyone who has been helping us, family and in-laws, parents and friends. I’d name you all but I don’t want to leave anyone out.
First off I should tell you all that I don’t feel a physical difference with the stem cell treatment, meaning I don’t know if I’m getting the placebo or I’m just not responding to the drug. Another option is that I am responding but in minor ways, like still being able to walk around and eat and drink and kind of talk. I don’t know for sure.
Overall I’m doing well, but progressing. Going through a bit of depression. I probably should not drive to work anymore. It is too far away and I’ll be exhausted by the time I get there. Food is about the same but there are definitely things I know I can’t eat. Speech is a lot harder to understand. Typing is getting difficult too. Stuff like this is slower to progress, but I notice them day to day. I’m not trying to depress anyone! I am just aware of my condition!
Anyway, recently I was having a hard time sleeping and was waking up with headaches. That’s a classic symptom of breathing loss, so we called up Hopkins to get a breathing study done. You remember, “push push push”!
Hopkins, not the Anthony type, was a fun trip. Mel brought the transport wheelchair, which was humiliating but so practical and useful for me. I’m slow! Getting in and out of chairs is hard! Get off my lawn! But we were able to get around quickly because Mel didn’t have to wait for me. Breathing function test at 11, pulmonologist at 2, but we got in early.
We also found the Baja Fresh in the cafeteria and got chips and salsa. it’s hard for me to chew but chips and salsa!
Like I said, we got in to see the Dr early. Things look good, and I will see a respiratory therapist soon for the BiPap.
The best news is that I’m still not medically forced to get on the BiPap, but it’s time to get familiar and comfortable with it. While we were there, we also talked about a feeding tube. So I’ll hopefully be getting that done later September or something.
Ok, I should explain. It is better to get all this stuff installed and ready NOW, before I absolutely need it, because by then my body may be in such bad shape that they won’t operate on me. Which means even SOONER death! I won’t be forced to use them and can eat and drink what I like, but I won’t have to lose another ten pounds because I can’t nourish myself. Does that ease anyone’s mind? I’ve got bottles of beer, Chartreuse, scotch, vodka, and others, that I want to taste and finish!
So to me, this is a positive, a proactive step vs reactive. Along with it, Joey and others are going to build a ramp to the house, which will allow Isabella, (My name for the permobil), and the EV that Jack is building, in and out and allowing me to do things like go down the street. Or go to Tim and Jen’s house to watch sports and have a beer without falling over in my driveway! Little things!
Ideally, I’ll be able to drive the EV around town, because it has the range, thank you, Jack! And that means we still have time to spare before we need that wheelchair accessible van. I’m still able to walk flat surfaces.
All in all, I’m doing pretty ok. How’re you doing?