While participating in another blog I realized that the multiple hits I have taken in the last dozen years have somewhat soured my attitude. Must do something about that. The title of this posting gives you an idea. Sometimes we need to bemoan our circumstances, really. So I will give you some of mine and welcome other contributors.
Here goes: I am SO tired of hearing how well I look /doing when I feel like s--t. I am even more tired,exhausted actually, with doing everything for myself, and hearing that I am not given more than I can handle. Booo Hoo that one really makes me scream. STOP you don't know what you are saying. I don't want to spend any more time 1. in a providers waiting room, 2. on the phone on hold with either advertising or mind numbing non-music. 3. driving to 2 different pharmacies because the one near me is out of what I need. I am in pain, fatigued, lonely, not tolerant right now of anything.
I feel so much better!!! your turn!
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gran5-
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I understand. Am not sure I would if I didn't also have PD.
Good on ya Gran. I had a rant the other week and felt better for it. I especially relate to the "you look well". Well, I bloody well am not well. I feel an eff off coming on! But of course you don't but maybe just maybe one day.......
Gran5, sometimes we need to get it out! Sometimes I want to scream and cry and throw things; but I don't....throw things. I've found that my family members and friends avoid the subject all together. It's like everyone pretends it doesn't exist because "I look good"; but it does, and I can't make it go away. It's here to stay, and I feel so alone because I don't have anyone that I can talk to about it. My husband knows what PD is doing to me because he lives it with me everyday; but it's like this dirty little secret that we don't talk about to anyone else because it makes others uncomfortable.
You are describing my circumstamces to a tee. No one wants to talk about Parkinsons, but I do. I need to talk to people, but I know they don't want to hear what I have to say.
I don't think it is because they are ashamed of me, more if we don't mention it, it will go away. If only. I know that I am lucky to have my family and understand that they are frightened for my future, but what about the present.
I don't look good, or feel good. I'm alone in myself. I don't talk because people cut me off and it's not worth the effort to try to get a word in. Screw them. I sit in the living room..they sit in the kitchen on those awful chairs that I tend to lean to the left in. Very few people visit with me. I'm here..............they are there...that's fine..frankly I'd rather wait until they are whispering and the I say "You talking about me?"
i tell everybody even total strangers I have PD. And all the weird things it makes me do especially if it's happening right then. like the one leg can can or the armadillo curl. They've stopped telling me "you have to get over this!" I even tell them there are 2 types -- with tremor and without, but it's really different for every Parkie. Don't get me started
This reminds me of a good friend who said "you're too young to have PD! She kept insisting that it must be something ele ( I was 46 @ the time of diagnosis). I finally gave in to humor her and said " I bet you're right. It's probably just a cold!" haha! I love to laugh & think a sense of humor is life-saving at times! She just stopped dead in her tracks & giggled.
Well, we may need 2 gatherings, one for bitching and moaning, the other for humor. In my experience they often lead into one another. I certainly would not be here w/o a well developed sense of humor (often bizarre,I was involved with PWAids from the early '80s, talk about humor). I'll have to remember the one about Chirpees for next time
How's this. I LOST MY WALLET with 3 credit cards, 1 ATM card, social security and medicare,Drivers license, service dog ID, $40 and New Mexico Medical Cannabis ID Wahhhhhhh. I'm writing in patches while sitting on hold for one of the above to respond to my cries. Can't shop to relieve the frustration. Boo Hoo
PS I hope no one is taking me too seriously, it is a pain in the butt and a nuisance but we've got far worse to be really down. It's the hours on line to redolve all this
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I've found that my family members and friends avoid the subject all together. It's like everyone pretends it doesn't exist because "I look good"; but it does, and I can't make it go away. It's here to stay, and I feel so alone because I don't have anyone that I can talk to about it. My husband knows what PD is doing to me because he lives it with me everyday; but it's like this dirty little secret that we don't talk about to anyone else because it makes others uncomfortable. 
Call for a long overdue discussion on this seldom disclosed issue with PwP's. 
My dad
The Caterpillar and the butterfly
Dead Tired
Just thinking about MJF and his new show.
