It has been far too long since I took the time to write here. I would have to look back through my posts to figure out where I last left off, a task I do not wish to undertake tonight. So for now I will just make a guess as to where to begin.
In good news, I have been volunteering at one of the local elementary schools. I work with kindergarten and first grade students who are struggling with reading and writing. It is awesome to be back in a school setting and feeling productive. The kids are wonderful and so open to differences - we talked about why I use a wheelchair and the kids got to ask questions and then they were good with it. It was just a part of me, a tool I used. The bad news is that I scheduled volunteering for my worst time of day and have missed at least double the days I have gone. So now we are trying to switch to afternoons, which work better for me, and I am just waiting on the local bus company to set up transportation. Either way I am exhausted by the time I am done and I am usually down and out for the day, and the next. But it is so worth it to feel that meaning in my life again, to be in a school setting, to be working with children.
Medically I have been neglectful of my own care. I have not set up a neurology appointment in months. It is hard to coordinate with my Dad's schedule (since I can not drive) but not impossible. I have ignored Gollum, the pituitary microadenoma, for over a year and probably need to get in to see an endocrinologist about him. I think it is time to scan and check his size as he is causing more problems. The muscle weakness is continuing its progression. My arms are growing weaker and I am afraid that soon I will no longer be able to push my own wheelchair. It does not help that Gollum and some of my medications have caused me to gain weight making more to push. My name finally came up for an appointment at the Mayo Clinic after two years of waiting, but I could not accept the appointment. I just plain can not afford the expenses of the trip - the airfare, the shuttles, food, the hotel for up to 7 business days. I also can not imagine trying to wheel myself around that massive campus and to obtain meals and such. I am back on the waiting list in the hopes that when my name comes up again I will be in a better position to go.
I do have an appointment with a psychiatrist in a month. We knew from my genetic abnormalities found when testing for mitochondrial disease that I am predisposed to bipolar disorder and early onset alzheimer's. Well, my brain decided that it wasn't screwed up quite enough with all of the issues it has and it went and developed bipolar disorder. I am taking a big risk sharing that here, because people have stereotypes of what someone with a mental illness is like. There is still a huge stigma involving these disorders even though they are as real and physical as any other issue I may have. I have started medication for the bipolar disorder, and although I think we will need to adjust it I have hope that everything will be well controlled. I am still the same person that I was before someone put a name to my scrambled brain, still the same daughter and sister and aunt and friend, the same writer and wanna be artist and photographer, the same passionate idealist and child advocate and teacher. I am me.
I plan on writing more on here again, but I am very tired after going to Target today to pick up greeting cards and a pair of pajama shorts. All I had were long pants and it has been warm lately. I am so thankful that winter is finally over and spring is here!! I love sleeping with the windows open, being able to go outside without layers, and the abundance of new life. It reminds me that in spite of everything, I am still unbelievably blessed and wealthy beyond measure!