I was pretty fired up a few minutes ago. I was talking to my mom on the phone, and then after we hung up we texted one another a bit more. I literally could not remember if I had had her on speakerphone during our conversation. (Now, it’s not “what” I couldn’t remember that is phasing me, it’s that I “could not” remember.) Not a bloody thing would come to my mind and we had just spoken on the phone about 3 minutes earlier! And I couldn’t remember if I had had the phone on speaker? What the crap?
THEN, I couldn’t remember my password to a website I log onto often. I mean, I visit this website daily and I couldn’t recall what my password was. What is going on?!
But you know what? As I was sitting here starting to become very anxious and worked-up, somehow I was led to the “Comments” section on my blog and I started to read your comments from the first days after diagnosis leading up to the first craniotomy. Man, what a way to knock me down a notch or two. Where I was compared to where I am today brings tears to my eyes. I may not have any money and am struggling severely financially, and my memory is failing, but I am not recovering from brain surgery tonight and I have a roof over my head. My cat Kona is to my right on the arm of the chair as I type this.
I am very thankful to be where I am tonight.
For the record, this insomnia I’m dealing with is killing me. It is so rough and I know this sleep deprivation is beginning to take a huge toll on me. The burden I am now forced to carry is very heavy.
Today, I am a human being struggling to manage some wicked symptoms. No positivity. No happy thoughts. Just utter frustration that my life is now all of this.
I was just thinking to myself a few days ago, “Man. I can’t wait for Fall.” Coolness everywhere is what this girl wants!
Anyway, I know it’s been a while since I checked in. Been really busy these last few weeks, which of course is a GOOD thing, but then my “recovery” after the “busy-ness” can take me a few days. Even after 5 years, I am still constantly learning how to manage my life now. Granted, I probably wasn’t doing too hot of a job before diagnosis. Now, add all this to boot? You see where I’m going, right? Also, thank you to everyone who shared my crowdfunding campaign. The deadline is in 4 days and I didn’t reach even 50% of my goal. Darn. Maybe I’ll try again another time.
I went out-of-town for a few days this week, been able to sub for a few days too. Fitting in exercising somewhere too. Sometimes, managing the medical stuff really is a full-time job. I had a few appointments a few weeks ago, so I plan to be writing about those soon. And, remember when I said I went out-of-town? Here’s a quick hint as to where I went:
Hope you all have a great weekend!
I had a very rough week. I worked at a temporary job for a few days that kicked my butt. I am noticing certain things are continuing to get harder for me; and that frustrates the heck out of me. I try to put on a good face as much as I can, but inside I’m struggling. I knew that I had to exercise last night. I had to. But, I wasn’t sure I could make it. I wasn’t sure I could drag myself out the door and to the gym. I know it’s good for me. I know there are many benefits of exercising. I know all this. But, when my brain is done for the day…it’s done. I can’t change it, you know?
But I did go workout! I am very proud of myself that I did it. I felt so much better when I got home last night. I am glad I found the strength deep down within me to do what needed to be done.
Hello friends, family, and followers:
Will you please take a look at this link and consider buying a shirt if you can? If you aren’t able to buy, please please share the link. I am very grateful for your help. Thank you.
I have met quite a few interesting people since my diagnosis of Cowden Syndrome and Lhermitte-duclos Disease. And, to be honest, many of these “interesting” folks have been medical professionals.
I had blood drawn this week, and sometimes I mention to the staff my medical history (but only if it comes up in conversation). The technician who drew my blood was new and I’d never seen her before. We began to talk about my veins, whether I was hydrated (I was fasting), things like that. I should have known things were going downhill fast when she began to push down hard on my arm. I had to hold my tongue to not tell her a thing or two!
I know enough to tell them they need to use a butterfly needle, as I have deep veins and lots of scar tissue from the surgeries. She didn’t like the fact that I told her that. Then, as this continued I mentioned the brain tumors in my cerebellum and Lhermitte-duclos Disease she said, “What’s your cerebellum?”
I about lost my noodle.
I didn’t mention this to a restaurant worker, or a teacher, or a bus driver. This conversation was with a person who works in the medical field. Basic anatomy 101. Kinda unnerving, to say the least. Especially when I got home and saw my arm.
I am dealing with a lot of exhaustion lately.
Sometimes, I think I waste too much energy trying to “figure it out”: Is it because of the brain tumors? The menopause? The depression? The brain surgeries? Something else?
Maybe I’ll just work on trying to accept what is. That’s what my mom says to do. Just accept it, live my life, deal with it, and move on. I try. My life now is all about “the try”.
Never realized how difficult of a thing that is to do.