Another try to get a CT Myelogram from the UC doctors. I have been trying it for about three weeks now, to no avail. I met with two doctors yesterday, first at 9AM with my PCP and then at 1PM with the Spine Clinic, I even asked Kev to join me so that maybe there's more chances that we can convince the doctor to refer us to radiology but it was a fiasco. constipation, loss of control of urination, sexual difficulties, abnormal sweating and the body’s temperature control system going haywire. Even breathing and heart rate can be affected. Also there's the issue of accessibility.
Injuries or diseases affecting the brain may also lead to difficulties with thinking or mental processes and to changes of behaviour; problems with balance; and difficulties with vision, speaking, swallowing and so forth. These issues need to be addressed along with the loss of movement when a person is being treated and is learning to cope with paralysis.I was just really glad and thankful that Kev took the day off and it was nice to have him for another day also.
Last night was the worst though in terms of my pain from walking, it was horrible. It's so hard to describe it, my buttocks feels like it's broken in small pieces like broken glass and my trunk and stomach feels like it wants to separate from my body, like it wants to break away and with unbelievable excruciating pain. The trunk is at the same time so stiff that if it gets twisted even a little bit is so painful!! My arms right now are even hard to lift up and the root of it is sooo painful with deep pain!!!I suspect that I have upper neuron damage since I have pain on the back of my head just on the left side and it feels like it is my brain although I fine it kind of weird because I have more weakness and pain on my left side now as oppose to in the beginning was all on the right. I don't know if it's because of compensating for the weakness on the right that I try to use the left. I don't know anymore.
It is more evident now that I can no longer walk long distances. I'm scared to walk the hallway of the hospital since before my Dad's passing in December but now it is even worse. If I did walk it today, the next day I have to stay in bed.
The loneliness I felt for missing the days when I used to spend hours exercising, toning my arms, doing body sculpting and constantly trying to keep my abs tight have long been forgotten. Every now and then the reminder is a flab that forced me to forget about my size two's and my arms that are now starting to wiggle with me.
At this stage of my ailment, I'm just living it for my son but I'm not having a fun time anymore. Seriously, it's not living anymore, I'm here because I'm not dead yet. I'm sure others would not understand at all. They would say it could be worse but for me the only thing that is worse than not being able to sit up is bedridden. I told my specialist that I prefer to be paralyzed and bedridden now. I know it's not a good thing to say but I'm just too tired. Been too many years of struggle. At least if you're paralyzed you don't have to struggle to walk, you'll use a wheelchair, lol.
Woke up from my tongue quivering last night again. The pain in my buttocks is indescribable, weakness in my legs gets worse everyday. The constant sweating and feeling hot in the back of my head and neck area is uncomfortable and annoying.
I guess I just have to live it day by day and just hope for the best.
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