Welcome! My health problems add craziness to my life. Here I post ideas I've tried, also questions I'm still asking. I have an electrolyte disorder. So I have crazy neuro stuff like complicated migraines, alkalosis, loosing my speech and paralysis. (including legs and hands) Little by little, foods had to go, they affected my brain and immune system. So I avoid like the plague: soy, dairy, gluten, nightshades, and try to avoid refined sugar. My body requires pink salt and electrolytes. I now use a speedy red wheelchair that I love. I've craved a simpler life, but how do you do that with crazy health stuff? I've already had a fire and flood, so I really don't value possessions. I value people and experiences. I am not compensated for any posts, just my opinions.
Monday, August 10, 2015
It's been really wonderful to finally stay migraine free! I'm also glad I've been able to ignore my wheelchair, braces and canes for several months. I had hoped maybe this meant I wouldn't need that stuff anymore. But I wasn't holding my breath over it either, knowing full well this was most likely a break. Three weeks ago I was rear ended while at a red stop light. Immediately I remembered every recently recovered herniated disk and started shaking with pain. I took two days off, trying my best "to do nothing" to recover. The pain did go away 2 days later. But all my neuro stuff started coming back with a vengeance. (Except migraines and my fingers being affected. Yeah!) One thing that became a real problem, is that I kept loosing my voice for long periods of time. My vocal cords were affected by the paralysis episodes. Gradually my episodes got worse until Thursday and Friday I needed leg braces and cane again, then Sat and Sunday I was in my wheelchair, paralyzed from mid ribs down. Saturday I could only speak a few words the whole day and that was with me really trying to force out words. So I spent my 40th birthday, (yesterday) in my wheelchair. Did that ruin my day? Surprisingly, no. I still got out to see people. (big accomplishment) I also went to my parents house for my siblings, nieces and nephews to have dinner, cake and ice cream with me. And we played board games. I also got my own violin for my birthday, so I don't need to share with my daughter anymore. About midnight, the episode stopped. I got up to walk around a bit, stretch and take more potassium.
I asked a support group for periodic paralysis if any of them had speech issues. People responded back that they did or had family who had the same problem. This really got me thinking. First thought was, "I need back up plans for non speaking days!" Then I thought about communication in general and its complexities. I remember learning a whole communication program for teaching children with autism to communicate, to help a family member. I once saw a TV show where a lady with autism explained language for her. She didn't start speaking until she was about 17. She heard people talking, but never knew she was supposed to respond to it. For her there was no difference between someone talking to her and the dishwasher running. It was noise that's just there.
When I was 18 I took American Sign language classes (ASL). Soon after, my health started to get crazy so I stopped doing ASL. Interesting though, that when I can't speak, I immediately think of sign language. But then I remember that the people around me don't know sign language. I haven't really signed for 19 years now. But I decided to start back up this month. I'm starting to watch videos, and will practice with a friend. I might start taking formal ASL classes soon too.
Writing is another form of communication. Once several years ago, I had a bad episode and a policeman was close by. He summoned an ambulance. I couldn't speak. They asked me if I needed an interpretor. I gestured that I just needed paper and pen. I wrote the answers to their questions and how to reach my husband... I regularly look for adaptabilty ideas. There are some great blogs, books and websites out there, that have given me lots of ideas.
Music is another form of communication. It is a language too. I was able to start violin lessons back up last week. (My next post will be about that.) I like to take pictures. Partly for preservation or history. The other part is to try to communicate the pictures in my head to others. I learn in pictures, and I often teach using mostly visual formats. Right now, I'm working on improving my 3 other voices: writing, violin and ASL. Thankfully my fingers have not gotten weakened again in the last few months, or I'd have to look for some other ways to communicate.
Love and compassion can be communicated without words too. There's a need for interpreting. I could easily sign for others, even on wheelchair days. I can always hear, I've never lost my hearing during an episode. So I'm determined to learn how to sign really well. Much of sign language is facial expressions. I also listened to a guy telling his story about recovering from cancer. He said there's healing for your body and healing for your soul. He's a cello player. The cancer center found a cello player who played for him while he got his chemo. He said that helped heal his soul. I dream of playing good enough to do a service like that for someone one day!! I plan to live to be at least 100, so I've got time to learn and get better. It is so important when you have limitations to feel like you can still do worthwhile things that can make a difference. What can you do for language and communication? And how can you show love and compassion, even if you can't speak the words? Finding a way to speak and show the words in actions and deeds is always good.