After just one day resting up from over exertion, ( see last post) I was able to climb up 14 stairs to where my power chair was parked, sit down, drive onto the elevator, ride down 1 floor, drive off the elevator, stop, stand up, and walk to my apartment door. All with very little loss of breath. Feeling good today.
After thinking it through, it was far less damaging and even easier than I thought it would be.
I had the blues
As I had no shoes
Until upon the street
I met a man who had no feet
-Dennis Waverly
This year on my birthday, one of my gifts was 6 hours per week of in home care. It’s been great. 3 days a week, for 2 hours each day somebody comes over, I get into the tub, she vacuums and dusts, then helps me get out of the tub, helps me dress, is with me when I walk or climb up and down one step multiple times, and sometimes I even get a meal.
Night before last, I had a vivid dream that I climbed up to the second floor, so I got the idea to do just that. I parked my power chair just outside of the stairwell, walked in using a heavy quad cane which my aid brought with her up the steps and climbed all 14 steps to the second floor and, since the stairs and the elevator are on opposing ends of the hallway, attempted to walk to the elevator. I did pretty well, making it 3/4 of the way there, before I got so out of breath that I had to stop and wait for my aid to get my chair. It was the most exercise I’d done in one sitting since my stroke, more than 3 years ago. I probably would have made it to the elevator if I’d used my lighter aluminum quad cane, or if the floor hadn’t had carpeting. Walking on carpet is not so easy for me, it clings to my rubber soles.
I was so proud of having my best exercise day. Until I noticed that my right hand and forearm were numb and not responsive. I worried that I had burst one of the aneurysms in my brain and had now paralyzed my only usable hand.
Thankfully, my husband came home early yesterday, so he put a brace on my wrist. I didn’t use my right hand for an hour or two, and it slowly came back to life. Apparently I had exhausted my hand with the handrail up the stairs, followed by using a heavy cane without a break.
As proven by the fact that this blog post is here, my hand is fine. And I’ve thought through an alternative, to make more exercise easier.
Next time, my aid takes the chair to outside the second floor stairwell, while I wait at the bottom of the stairs for her to join me. I climb the steps to the chair, sit down and catch my breath, then drive the chair to the elevator, go to the first floor, and walk the tiled floor back to my apartment, using the light cane. Since tomorrow is next time, and my left leg has been sore all day, it may not happen until Monday, but I will keep you posted. Also there will be another video update as there is some improvement in my walking.
I had been moping about my one handed life, but it’s far better than a no handed life, as my short time with no hands taught me.
The call I waited 9 days for came in yesterday and … the result is, I don’t have Carney complex. So, that’s one less thing that could have caused my heart tumour. My next scans take place in January, so we’ll see what, if any, changes my heart and my brain have gone through and go from there.
My entire family let out a sigh of cautious relief. Cautious because my doctor still recommends that they get an echocardiogram regularly . It’s amazing to me, that only 750ish people have been diagnosed with the disease since it was discovered in 1985. And that’s in the entire world!
So with the new brain scans, we’re looking for growth of and /or new aneurysms . If they show growth, they’re likely myxomatous aneurysms, like my first neurologist originally thought, and I still believe. I’m not sure what it means if there are more aneurysms, but I’m sure I won’t like it.
I’ve been getting bad headaches again, they were debilitating for about a week, a couple of weeks ago.
Lately, while walking the tiled hallway outside my condo, the caulk that outlines the tiles moves, not actually, it’s just the way my eyes see it. It’s almost like I’m under water.
It doesn’t get better from here. Just because something is benign doesn’t mean it can’t kill you, it’ll just do it slowly. The stress might kill me faster than the cerebral aneurysms!
So, today I got a phone call from the cancer agency telling me that my test results have come in. If you recall, I had my blood taken to test for Carney complex, a genetic disease that could explain why I had the myxoma tumor in my heart and why I currently have at least 5 aneurysms in my brain. And here’s what she told me … The medical oncologist will be calling me with those results on Thursday the 25th .
End drumroll. Begin countdown at 9 days.
Recently, my nephew asked me what was wrong with me. His mother had been telling him that my instructions got hurt. I went on to say that your brain is like a computer full of instructions for everything that your body does and when your brain gets hurt some of those instructions get damaged and the brain has to find new ways to access the body parts that aren’t working, and the brain takes a very long time to find them.
Depending on how much damage to the brain there was, you can have a full recovery, or you might just partly recover? That’s why I try to exercise my brain as much as possible.
It’s important to keep learning so your brain will be nice and strong and tough to damage.
He went outside to think, and about 15 minutes later he came back and said that he’s sorry my instructions got damaged.
He’s absolutely correct.
In my life I’ve been lucky enough to see pairings of some of my favorite people creating projects that may as well have been called this was made for YOU! The first time this happened was in 2008, my favorite director of all time, Martin Scorsese, decided to take a documentarian look at my favorite band of all time, The Rolling Stones, in the film Shine a light. Not only was this the movie I’d been waiting to see since I was 11 (1976) and fell hard for Mick Jagger, but since 1990 , when Scorsese’s Goodfellas , the true story of Henry Hill, hit theatres. I’ve seen that film at least 20 times and there is not one frame that I’m not in awe of. Putting rock genius together with film genius to make a movie that I can’t find fault with. It’s the perfect blend of behind the scenes footage of the band and the best photography of a stage performance I’ve ever seen. It’s also a pairing where I don’t know who I’m more jealous of, Martin Scorsese or Mick Jagger. Oh to be the fly on the wall of this friendship. I’ve never been so creatively fulfilled.
It’s currently happening again. My favorite female singer /actress, Cher, who i have wanted to be since I was 6 years old, teamed up with my favorite European disco band, Abba, for an album of covers of their hits called Dancing Queen, and a tour titled Here we go again. Just the good natured fun I need desperately right about now. Unfortunately for me the tour doesn’t get close enough to where I live for me to go, I would have to either take a 5 hour fight across Canada, or go to the States, which isn’t going to happen. Even if she was coming to Vancouver, it’s a 2 hour ferry ride, and a hotel stay of 2 nights. Why 2 nights? I have to have a day to rest after a travel day because my brain becomes overwhelmed with information and I become exhausted. Stupid stroke! Stupid cerebral aneurysms!
Thankfully there is the Internet, so my greedy ass is asking for a little help. Greedy because I’ve seen the movie, will buy the album and have actually seen Cher live once, back in the 1990s. But I crave more.
If you or someone you know is going to be in the audience, try to put up a clip for me .
