It's been a long time since I've posted, mostly because there are few big things that have occurred to me in that time period. In the wider world, there have been reports of possible MS treatments (such as the stem cell theory), but nothing that I would trust to try. When I took a chance on CCSVI treatment in 2010, it was after many months of research and a conclusion that the hypothesis made sense. Almost 9 years later and the improvements I gained after the treatment (balance, autonomic functions, fatigue) continue to this day. So why do I look at all the new drugs and procedures with so much skepticism? I guess it’s because I’ve seen so many MS scams and, while I was excited about taking a chance in 2010 on something that made sense to me, I haven’t seen anything like that since.
So, how are things for me these days?
- I am now in a power wheelchair (Permobil F3). I still use my small foldable EV Rider Transport for car trips out of the apartment since I don’t want to buy an accessible van until I have to. So far, my upper-body strength is adequate to use the small scooter when we go out. I no longer drive since I can’t get into the vehicle myself: someone else has to load it into the back of our SUV.
- I can still transfer (usually safely), but I can only walk in the therapy pool at the YMCA. We plan to go three times a weak, but it rarely works out that way because of other appointments or being sick. This week, for example, I’ve been battling a light cold… it may only be a slight cold, but it’s still enough to dissuade me from going. I get weak very quickly if I even just have a light flu or cold.
- A similar sort of weakness occurs when I just do a bit of work on my knees or on my haunches. I’m often so weak after a little effort that I can hardly get back into my chair again.
- My left foot and hand are almost useless… which means that the arm and leg are getting weaker from lack of use. You should see my right arm, though.
- Almost constant pain or discomfort is a drag. Some of the plethora of pills I take help (Arthrotek for arthritis, for example), but marijuana oils and distillates (Sativa-dominant during the day, Indica-dominant at night) help a lot, especially if I remember to take enough before the pain gets bad. When the pain is too much for marijuana to handle, I use whiskey, but with all the drugs I’ve taken for so long my liver isn’t in great shape so I have to find an alternative.
- I’ve partly “smart-homed” our apartment and cottage. Some lights, the front door lock/doorbell/camera/mic/speaker (at the apartment) and my entertainment systems can almost all be controlled by my voice. I’d love to find some reasonably priced smart door openers/closers that would be compatible with Google Home.
Despite my health problems and the cost of coping, I’m still quite happy. My family and friends make life worth living, and having our kids in town (not even just in the country) is marvelous. And my little granddaughter is such a joy to me that I have to smile every time I think of her.
I read a lot and participate in Twitter and Facebook conversations. I want my kids and their kids to live in a healthy democracy in a healthy environment, so I’m doing what I can to challenge climate change deniers and lying, bigoted populist politicians.
Life goes on.