I think an update is in order since it’s been a while since I’ve posted. My brain has been all over the place so you can expect this post to be, as well. I can’t seem to get my mind to slow down enough to have one thought at a time. Instead, it’s like my brain is throwing a million different ideas at me in a single second. You obviously can’t see this since I’m sharing a final draft and not what it looks like right now as I’m writing it but I started this post 5 days ago and I have so many separate thoughts and ideas going on. I’ll write one thing and then get another thing in my head that I want to say so I’ll start a new paragraph twelve spaces below. Hopefully, by the time you read this, it’ll be one coherent blog post.
Anyway, I’m through the toughest part of the medication increase, I think. I’m not wobbly (or any more wobbly than I usually am, LOL) or super slurry with my speech so I’ve made is passed that awful stage of medication increase. I’m still in a good amount of pain and no doctor’s appointment on the books yet because she’s still away. I am, also, still experiencing trouble with my vision and problems with my memory and brain. My memory is defective.
My poor brain has struggled since I first got sick but it’s worse than ever. And I keep getting so frustrated. Sometimes I ask the same questions over and over again. I can’t remember things I’ve just been told or people I’ve met multiple times and I can’t recall words. I’ve had issues with my speech and words since I first got sick but it’s just getting worse and worse. I always seem to just draw up blank and it gets me down. I’m trying to learn coping mechanisms, though.
For example, in the shower, I often forget if I’ve already washed my hair and end up washing it several times, so I now look for the suds on the ceiling and that will tell me if I’ve already done it or not. Don’t ask me why I shampoo my hair so vigorously that shampoo bubbles end up on the ceiling because I can’t give you an answer but I’m glad I do because they give me visual confirmation that I can move on to the next step. I guess that’s kind of a weird example to share but I’m trying to come up with clues like that for most things. I might not be able to remember a lot but at least I can find signs to help me out. Forget diamonds, coping mechanisms are a girl's best friend.
I’m still really frustrated, though. Especially when I’m trying to have a conversation and I have no words or I open my mouth to try to speak and I just make some weird noises. I’m not a seal, obviously, but sometimes I sound like one. Half the time I laugh at how silly I sound, but sometimes I get pretty sad. When I’m feeling really upset I like to mention how smart I used to be but that doesn’t do me any good. I’m still smart, I’m just different now. Like I always say, this is my new normal and I just have to accept it.
Speaking of acceptance, my hair is falling out. I got so frustrated with it right before Thanksgiving that I chopped off about 6 inches on my own. I normally cut my own hair and I've been doing it for years and years but I messed up. It was so ugly. I cut my own hair because a salon + my anxiety don't mix so my Mom asked one of her former students is she would be willing to come over and fix it. She did such a great job and it looks better than it has in a long time so the whole thing ended up as a win. I'm always so appreciative of people who are kind and understanding about my anxiety and it always warms my heart.
Moving on, I got recertified for disability. I didn’t mention it before but my interview was the day after my MRI. That really added to the stress of the week but thankfully I was approved. It was stressful, thinking that I wouldn’t be able to pay for things. My family would support me fully, no questions asked, but I like being able to pay for my room and board. I like taking long showers and soaking in the bath for hours, and that right there is expensive alone. Not to mention my food and electricity and just living, you know. I don’t receive much money each month but it’s enough to help and that helps me feel better about my financial situation. I don’t ever like to really mention that I receive disability because I’ve seen and heard a lot of people say horrible things about those who receive disability. I’ve seen friends of mine on Facebook say that people shouldn’t receive money for being disabled, especially when they’re young, but you know what? I need help. And if I was still able to work and anyone else needed help, whether I know them or not, I wouldn’t mind paying taxes into government funds to make anyone’s life a little easier.
Oh, the reason I brought up the disability interview is because it was with a psychologist, the same one I saw 3 years ago for my original interview. He is a very kind and warm man, which makes the process a little easier. He said I would probably see him again in 3 more years. I should have known when he said those words that I would requalify. Anyway, he asked me a question which made me understand something I hadn’t before. He asked me if my pain causes my anxiety to be higher and it was then that I realized that my anxiety comes directly from my illness. My pain and confusion and memory issues and weakness are what cause me to be anxious. It makes so much sense. I never thought about that before. I was never anxious before I got sick. I was brave and outgoing. I was super social and loved meeting new people and talking to strangers in public. I was such a different person back then (again, not in a better way, just a different way) and I never understood where the anxiety sprang up from. It’s just nice to understand my symptoms a little better.
Something else I’ve been thinking about a lot is how my Grandma was sick. My Mom’s Mom was one of my favorite people in the world and I miss her and my Grandpa every single day. I think about them so often, especially at the Holidays. My Grandmother was sick, like me. She died of Congestive Heart Failure but before that, she had a lot of symptoms similar to mine. She also suffered migraines. She likely had undiagnosed Parkinson’s Disease. She tremored and shook, like me, but worse. She probably had an autoimmune disease. Maybe she even had Trigeminal Neuralgia like me. I'll never know. I wish she was still here for a million reasons, but I also wish I could ask her questions about her health. Maybe I could understand my health problems more by knowing about her health problems.
The final thing I want to talk about today is my Dad. My Dad was gone for almost a year. He wasn’t physically gone but he wasn’t here. I know that is really hard to understand. He was put on a medication last November that took him away from us. He wasn’t himself, at all. I really thought he was going to die. My Mom thought he was going to die. He even thought he was going to die. It was a really hard year for that reason alone. He doesn’t really remember the past year whereas my Mom and I do, but that part of our lives is over now and he’s back. My Dad is here and he’s happy and healthier and we’re getting along and being a family again. I couldn’t be happier. All I need in life is my family and now I have my family back again. The cancer is still gone, too, by the way!
That was a lot to throw at you. Sorry about that. Like I said, I had a lot of stuff floating around in my brain and now it’s out!
One last thing I need to put out there is a big thank you to those of you who read my blog and/or blogs. Sometimes my writing is all that I have, besides my family of course, and I really need it. I want to say an especially big thank you to the former student of my Mom’s who wrote such kind and lovely words about what my blog and what I've written. You made me cry, in the best possible way, and I am very grateful for what you said.
Okay, that’s it for now I guess! Can you believe Christmas is almost upon us and the fact that it’s almost 2018? Where does time go? Please leave a comment telling me how you’re doing and what you’ve been up to! I’m sure not all of you celebrate Christmas but Merry (early) Christmas to those of you who do and Happy New Year to all of you!
I'm feeling happy and positive. I've been reminded of what really matters in life and I have a feeling 2018 is going to be incredible. I can’t wait to see what it brings all of us! Remember, life is what we decide to make it. Talk to you all in January!