Living In the World, Not on It

Well, we finished watching last night's MasterChef, and while I had liked Krissi and admire her cooking ability (she'd surely laugh at me as all my friends who cook do, since I can make hot water for tea and that is the sum total of my cooking ability), I was not happy to hear - by her own admission - that she was a bully in high school. I was bullied very badly in school, and I don't respect anyone who did/does that to people under any circumstances. To hear her say this (as if it were admirable, no less), has severely lowered my opinion of her. She has what I privately refer to as either "fat woman's attitude" or (alternatively) "short woman's attitude". In Krissi's case, it is the former. Now, don't give ME a hard time for nailing that sort of "C'mon, let's fight" attitude that both overweight and diminutive women (and some men - although for men the stature one is the most common - overweight men seem to care...

Well, okay, only one rainy day. I love living in thunderstorms. We started out today with the nice thunderstorm, around 09:30, maybe 10:00. There are no real benefits to early-morning thunderstorms, of course. No storm before the late afternoon, evening or at night (before midnight) has any benefit - it just creates heavier humidity - as if anyone wants that . But still, a storm is a storm, so I enjoy them any time of the day. But today's thunderstorm brought with it a slew of rain, and I don't care for plain old rainy days. If it is not going to be thrilling and exciting and full of raw power and insanity, then I want it to be sunny and lovely, no humidity (I will settle for low humidity, which here is a number such as 40. Once it hits 55%, it becomes remarkable and of course on those days it hits the 80s and 90s forget it. I want nothing to do with that as well. And while I can't completely admit that is was not without its element of surprise - we received f...

The phone rang and what sounded like a law firm was calling. I decided I'd best answer that call - it's one thing to blow off-- well, anyway, I answered it and a woman's soft voice was off and running, inviting me to a dinner at another house in Parsippany to meet a Ms. Hart, who is running for Senate. Her biggest thing is to save the watershed while the current incumbent wants to change or modify the laws protecting the watershed to build. I don't give a rats ass what the incumbent wants to build, it is wrong. But before hearing about the watershed, I was just listening and thinking that this is a canned message - which seems crazy as that would be a LOT of people showing up - potentially - at one's home. And when the message got to the dinner invite, I chuckled. and suddenly the message stopped! I found myself suddenly stumbling and tripping over my own tongue. "Oh --OH! You're not a message. You're a live person!" I laughed again, and said,...

I suspect that while those close to me understand what I am going through, those not close to me have no clue (whether I tell them or not). Telling someone of this is not necessarily a window to understanding for them. And the weirdest part, the big unscalable wall I keep constantly and consistently hitting is the part of this I can't wrap my head around and get past. No one can see what is wrong. This is a much more difficult thing than I anticipated. I  know I'm sick. I know I have major health problems. My family, my husband and my closest friends and anyone who has had the misfortune to be on any of my calls to 9-1-1 knows I am sick. But to the rest of the world I am healthy, so what is my problem?! Just because you can't see it, this does't mean it isn't there. The first time I saw that sentiment was not all that long ago on Facebook. I was still working at the time I'd first seen it. I was eating lunch and took about three minutes to glanc...

I find it staggering how many people are openly critical of the number and types of medications I take to manage my Dystrophia Myotonia D-PROMM Type II condition. Stop it. It's easy for you to say, when you have zero medical issues, sleep like a baby at night (this does not mean that, like me, you woke up every two hours and cried), have a slender figure and feel great every minute of the day. No. You clearly have no idea what it means to live like this: to know you'd be bedridden and unable to do anything, really, without the muscle relaxants and the pain meds. When you do live in my specific brand of hell, then yes, go ahead and criticize. Just keep in mind, you have to have the exact same condition, the exact same complaints (everyone with this will tell you that none of us exactly mirror the next person's symptoms), and progressed to the exact same level and problems. THEN, and only then, do you get the right to bitch at me about my medication list. The actual fact...