I’ve had lots of alternating excitement and disappointment lately. I guess for the most part that’s called life. It just seems magnified when ALS is always with you. That goes for the person with ALS and the people who love them. Don’t get too used to anything. It will change. What an adventure ALS is. If given the choice I would have chosen something else like the frustration of living out of a suitcase, moving from one 5 star hotel to another all over the globe. How awful! Yeah, I would have chosen that.
I’m a little disappointed we’re not fully downstairs yet. I’m disappointed that my husband and I can’t share a full size bed. We love each other but that’s just too close. My mom warned me. So after buying a mattress cover that I insisted on after seeing all the shows on the dust mites that feed on your dead skin, nice sheets and a simple bed spread, it’s a no go. So there’s a little disappointment. It’s been great really though. I’ve been spending my afternoons down there. Tony carries all the things I need down and It’s almost like leaving. With the TV mounted, it’s cozy. For one.
There are many silver linings! Our son, Tyler, is moving back so we will put the bed upstairs (tony will) and Tyler won’t have to sleep on the couch until he gets his own place. He will also be a big help to Tony with all the work he’s doing. Tony is almost finished with the door to our new space. Right now he’s waiting on some mudding to dry or something, he’ll paint the small area and it’s ready. He bought a 36″ inch door. I drove my power wheelchair through the frame last night very easily. So there’s some excitement. It’s getting close. He has to move the full size bed up and get our king size down, with a couple other items we’ll have everything we need to be down there full time. The next thing is installing the pedestal sink and we’re really set with what we have to have. All that is really much more excitement than disappointment.
Even though I’m scheduled to go back to Emory next week to continue with all the tests making sure I meet all the criteria for the stem cell study, I’m basically on call for a specific test so I can get it out of the way. It will make next week’s appointment much more likely to be able to do my Validation of Biomarker study on that same day. You won’t find me complaining about that! I’m ready to get it all finished. It will actually work out great and not disturb my biomarker study. Hopefully I’ll have the surgery early enough to be fully healed up and never skip a beat on the Biomarker study. My goal is to give three full years of that for research. So I’m hoping we can get that in early this week because the end of the week is when we go to Steven’s white coat ceremony.
It’s so easy to get overwhelmed, scared and stressed over it all and we do at times. Staying busy with all the different things we have going on is driving us crazy but, it’s exactly what’s keeping us sane really. I wish so badly I could be more of a help physically, instead of coming up with ideas for Tony to bust his ass working on. The physical work is helping ease his worries by keeping him occupied and busy even when his real work day is finished. We both agree we are taking no chances of risking injury to myself and not being able to meet the study criteria. So we keep up with my range of motion exercises and take no risks. I’m still eating healthier and all that good stuff and I’ll have a nice ground level, comfortable place to come home to for a quick as possible recovery.
My documentary is coming along slowly but surely. That’s a good thing because it’s going to span the rest of my life with ALS. This expense is a concern and we’re working on getting that all figured out. I must work on my website content. Every time I plan to dedicate some real time to it, something comes up. I will get to it. Keep checking it out. I’ve added and changed a few things. It still needs a lot of work.
Well, I’ve touched the surface of our excitement and disappointment we’ve been dealing with. I probably shouldn’t even use the word disappointment. Everything is far from perfect but I’m really lucky in so many ways. Most important, and no cost, the love and support of my family.
Until next time, take care,
This article was written by April