This last month has been very, very challenging. I made a big change in effort to try and find a better way to live, and to further rehabilitation.
I have experienced a few extreme (but short lived) drops in functionality, return of two bad symptoms, combined with all of this, further strengthening of walking and standing. Overall, HSCT is giving me more and more improvement. I’m so afraid to write this as I dread if it ever reverts….
Just under a month ago, I moved to Oregon again so I could horseback ride, evade the rain and cold of my home town, and to find a more accepting environment of my disabilities. This move was nothing short of an immense amount of stress, money and extraordinary detailed coordination on my end. Thanks also to some of my amazing friends and people for their incredible help.
Sometime in April, I felt this new sensation in my brain, saying, “I think I can drive again”. In May the feeling was strong so I moved forward on a wing and a prayer, to track down a used van, in a used car market that is tight as heck. There are only 5 van models that my chosen Bruno Joey hydraulic lift (for a mobility scooter) can be installed in. I found a Honda Odyssey, and only thanks to the unbelievable help of my dear friend Ian. Once bought, I could then order the lift for the van.
This is the basis of the biggest news to share, although I know I dropped a nugget of this last post. I am driving again for short distances, and consistently. It is the first time in 8 years, since I lost this soon after diagnosis! Latest bad news is that from the beginning the lift has had issues, and just recently it has unexpectedly cracked and broken so I am housebound until this can be fixed. It’s amazing that how much energy, time and money I spend organizing things, then they crash and burn when the least expected, and desperately needed.
That aside, up until this, I made my first few drives to the grocery store, with my scooter, shopped on my own, and took the food home. I have not driven to a grocery store to shop on my own in over 8 years. To do this has made me feel almost like an adult again and it is surreal. I’m still processing it.
I have driven to my equestrian centre (Healing Reins) multiple times on my own and sucked up the yummy smell of horse manure. The lovely ladies at the barn have been fitted me into the schooling schedule and I’m riding twice a week. It is a 20 minutes from my home.
My sensory symptoms are, generally speaking, the same. A lot of pain, and in particular, I have had a return of bone pain with a vengeance. I am in the queue to see an Internal Medicine specialist for this as they can’t figure out why this is happening. It comes on in the middle of the night, wracking my already challenged sleep, and goes on into the early morning.
The other symptom that has returned is the bladder pain. It burns 24/7 and is worse when I go pee, and I do not have an UTI. It is the same feeling as when I went through HSCT. My bladder feels like a hornet’s nest, so to speak. I am going to see the doc this week.
I have had moments of brilliance with longer standing periods, more solid walking, and for longer periods. I have included a short video of walking. I can see I am still quite stiff in my hip flexors (dang, that spasticity, and some tendonitis), but really, it is a miracle what is happening ❤️
Ramp Into House
Click for New Ramp For Entry Into House
Click for Walking Video