Both the sound of the clock and my body…
There is a pattern to my tics, though the pattern seems to change to another, which in turn changes to another over time and on to more patterns.
There are now noises accompanying the tics. Gasps, low ugg sounds, or a “NNN” noises. It’s just great because if I’m somehow going unnoticed in a crowd (even with pink hair) the noises will bring it all back to me. The difference between being noticed for pink hair and for having a movement disorder is that people aren’t frightened or weirded out by pink hair. Not so much with the tics and noises.
Buspar was added to my regime since having all Welbutrin removed from my system. So far it seems to be fine. I am depressed with moments of grief and hopelessness. Reminding myself that this is environmental and that tomorrow will come, even though I will be fighting the same fight, seems to help bring back hope. I mean, anyone with this going on would get depressed. This IS a big deal and it’s ok to keep talking about it, even if everyone in groups will grow tired of it. Though they don’t, it is a worry of mine. To become tedious is more frightening to me than an audit or the monster under the bed ever was to me.
Watching others on video who have different movement disorders helps me place this in perspective…though sometimes I have to back away from others with it because it triggers my tics. That’s kinda tough, needing others stories and experiences but being triggered by them also. It’s a little funny in a macabre way, watching ticcing while ticcing. If it wasn’t so real I wouldn’t have to laugh to keep from crying.
The good news is my insurance has been straightened out. I can now go see a neurologist (for the movements) an immunologist so we can continue to work out the auto-immune disorder (which will cover the hives and times of weird tiredness and illness) and , of course, a general practitioner to over-see all of it. Gratefully, the prednisone is out of my body and the weight is trying to come off me. One down, just a few more to go. My already complicated medical history is slow to untangle.
My spiritual beliefs have been tested and I lose them for periods of time. I wonder if there really is the God I have come to “know” and trust. Then, later, a moment of gratitude will be grasped as if it was a life saver. Doing jokes on Twitter helps me get out of myself and focus on others, and give something back to those who may be having a bad day…or me having a bad day.
The anger is not as prevalent now, but the grief is coming, which I know is normal.
Who would have thunk it? Me with normal.
Enough. We all need a break from the heaviness, from worrying about myself and my future.
My grandson was born March sixteenth. He is the embodiment of hope for the world, every baby is that form. Of course, as a modern day Memere (grandmother), instead of carrying a wallet full of photos, I have a phone and Facebook wall full of them. E. is just as guilty of photo spamming on her wall. She is the proud Aunty. He is perfect and warm and beautiful. My son and daughter-in-law are amazing parents and a good team. I am proud of all three of them and grateful for my sons in-laws being such good people. S. flew in from Chicago and we will probably spend Easter dinner with them all in Philly. E. and I will go home to south Jersey that night and S. will stay and pick her flight back to Chi-town the next afternoon.
I am blessed to have these people in my life.
I hope you are just as blessed.