It’s August 5th and we’re still not in the den… Have I had my moments of being frustrated? Yes I have. Have there been moments I let my frustrations be  known to Tony with an argument ensuing? Yes indeed. Have I later regretted it? Yes.

OK, quiz over. Tony is doing everything he can. I’ve made a few extra requests for our new temporary home downstairs. It seems so far away. It’s not. When you can’t so easily run up and down stairs, it may as well be.

Another thing is Tony and I have always worked on projects differently. When we were both completely able-bodied, we would fight about an hour. kiss and make up and continue on. We were always happy with the end result, with one exception I won’t get into, but concluded we didn’t work well together. We just do things different. Neither necessarily being wrong, but hard for us to stay in sync.

For me, once I started on something I hated to stop, I was a wreck just stopping for food or sleep. Tony, on the other hand, as long as there was no deadline, was comfortable to stop and sit and ponder over what had been finished and what was left to do over a cup of coffee. He knew we would finish. I, on the other hand couldn’t stand it, I had to continue. With that said, we also had a lot of fun, laughs and great memories working together. I’d love to be doing it now, arguments and all.

What we both wish now is that we would have continued years ago with some DIY home improvements. The house would probably have already sold. We just stopped. We did plan to continue and probably hire help for some things. Now we are too scared to let go of any of the very little money we have. Mainly because we so desperately need a wheelchair van and it’s scary spending money in case anything happens. Extra expenses from ALS put us back and we have to keep paying the mortgage and all other expenses of this house until it sells. There is certainly not any, I’ll buy this just because I like it, going on.

Back to the den. After he made my shower, which he has revised a couple of times since, I had it in my head we’d be right on down very soon. As time has gone on and we realize we may be there a while before the house sells, not to mention it may help the house sell, we want to make it as nice as possible. This is hard on a shoestring budget. For one thing, in the half bath/laundry room there is a big boxy dated sink in there. Looking dated doesn’t help sell and it really is an obstacle for me. After realizing the  possible hazard to me, Tony has scoured Craigslist for a pedestal sink. The original plan was to hang curtains in the opening of den. Well, now we’re looking at putting a door in the hallway right before turning into the den. Since we have a wet bar, we’re thinking more and more of this being a full little efficiency apartment basically. This is why the shower has been revised and what is taking so long.

What I have to keep in mind is I can’t change the fact that I can’t help like I used to. Tony likes doing things his way, and since he is doing it, I have to accept he’s doing it his way and at his own pace. It’s coming along, and he’s doing everything right. We’ll likely move down before everything is finished. I’m just so ready. It’s something to look forward to.

I have plenty of other really important things to keep my mind busy. We are looking forward to going to Steven’s White Coat Ceremony next week. We are of course very proud of him. The following week I have my third observational month appointment at Emory. I’m excited and reasonably nervous. I usually forget most of my dreams after being up a few minutes, but I have had such vivid dreams about this study both good and bad. I like to know and prepare for things. This study doesn’t fully allow for that. It does for the procedure itself, but it’s getting there that can be nerve-racking if I let it because I don’t know exactly when it is. Certain tests have to be performed within a certain amount of time before the procedure. I’m hoping this last required third observational month will give me more of a timeline. Nothing in this is guaranteed. I’m just trying to stay calm, eat healthy and think of other things. The den is serving as a great distraction. The TV  wall mount will be here today and we have the bed ready so we’ll be down there soon enough. I’m excited!

So that’s most of what has been going on in my exciting life. I will return with more soon.

Please visit my website at http://thealsexpress.com

Until next time, Take care,

April

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