P-Diddy and Rheumy-V

If you haven't picked up on it, I give nicknames to the ailments I have, hence "P-Diddy" which is short for Parkinson's Disease and "RV or Rheumy-V" for Rheumatoid Vasculitis.

Found out that in addition to the lovely Vasculitis, I have Rheumatoid Arthritis as well. I can hardly wait for the gnarling of my fingers to come! Just a little joke. And, believe me, after being on steroids for...I've lost count of how many days, I'm feeling punch drunk.

Without further adieu, some good ole' self-deprecating humor:

Contributed by Dianne Shaw, 2006

Vasculitis Humor

"It's time to take Prednisone AGAIN?

You know you have vasculitis when:

* Any conversation can suddenly turn into a round of "Charades".

* A "good hair day" is when you realize you have some left.

* You tell your kid to "clean up the floor" and they just get the broom out and start sweeping.

* You make a grocery list so you won't forget anything, and then forget where you put the list. * (On a REALLY bad day you also forget where the grocery store is!)

* You bathe the lawn, fertilize the dog, and brush the kids.

* You use the smoke detector to tell you when dinner is done.

* You try to type and discover that you've invented a whole new language.

* You keep sunscreen by every door.

* Getting some fresh air means sitting near an open shady window.

* You have a temperature and moisture-controlled room for keeping your large quantity of meds.

* You're the only one who believes you're THAT sick.

* You sit in the car for three hours wondering what you needed to do, not even sure where you are.

* Someone asks you what vasculitis is and you've forgotten.

* It takes so long to get one project done, because in the meantime you've been distracted by at least a million other things.

* You put the ice cream in the cupboard (and then wonder why somebody else did something THAT stupid).

* You know every doctor, nurse, within 50 miles of your home - AND you've financed most of their vacations.

* The pharmacist sees you coming down the aisle and doesn't even have to ask your name.

* You decide to buy stock in pharmaceutical companies (because you buy their products so much they ought to make lots of money) but you can't afford to invest (for the same reason).

Take my constricted blood vessels please! (Bah-dump-bump)

**************************************************************************

Parkinson Disease Humor

is that dyskinesia or are you just glad to see me?" ....."I think she likes me; she's been staring at me all evening!" ......"we take drugs pretty seriously at our house".. ....."hey, looks like somebody got their prescription filled recently!" ........and I said to her, "As long as you're feeling dyskinetic, how 'bout getting started on that butter-churning"? ..........so I asked him, "Why don't we go to your place and you can show me all those child-proof containers you're always talking about?"

***************************************************************************

Favorite T-Shirts about PD:

"I have Parkinson's not cooties"

"Levadopa, Breakfast of Champions"

Favorite Rheumatoid Arthritis T-Shirts:

"My immune system attacks itself, what does yours do?"

Ya gotta laugh, right? Time for more steroids.

More Musings Later-

Run! I'm on S T E R O I D S

That's no lie. If you've been following this blog, you know that I periodically take steroids. Have you ever read the flipping warnings on the pill label? It ain't pretty.

"Prednisone is a drug that's commonly used to treat a wide variety of diseases. Common side effects include mood swings, increased hair growth, facial "mooning" (also known as "chipmunk cheeks"), increased appetite, night sweats, acne, headaches, weight gain, and many more too numerous to list here. Long-term use could result in steroid dependency and bone density loss."

Shall we sing a round of "I Feel Pretty?" Jeez my knees. After being on mega doses in the hospital last year, I found out that I have a lovely array of side effects!

This looked alot like me when I was n the hospital on steroids.

Notice the attractive, yet crazy bugg-eyed look.

Have you seen some of the people that use steroids? Especially athletes...they go nuts!!!! Whereas, I might find it fitting to cry for 45 minutes over the idea that I must write an article. You never know with that stuff....it's crazy. And, it makes ME crazy.

YOU try putting on a bra while on steroids!

So, you can imagine my angst when the doctor took one look at my vasculitis ridden legs/feet and began scribbling that familar name: Prednisone. YUK. But, it does the trick somehow. So, if you see me out and about, RUN....it's for your own safety!

So far, my sense of humor is still intact.

More Musings Later-

Falls, Referrals and Boots, Oh My!

Can I say one thing I have observed in recent months?

HEALTHCARE SUCKS

Now, I didn't bitch when I got the vasculitis (Churg/Strauss Syndrome) although I wanted to! I won't post the pics of my breakout they are so disgusting...but, I am 46 and have been fairly healthy for the most part...no major surgeries and so forth. So, what the hey, I decided to grin and bear it. I kept thinking of my sister putting up with the same crap only much more so and now I was feeling some of her pain.

So, I still have a nasty rash on my legs and feet and I guess I've grown used to seeing it. I'm on my last antiobiotic (Praise Jesus) and I've weaned myself off of insulin and massive doses of steroids.

Can I say steroids SUCK? I was SO depressed while taking it in the hospital and at home. I remember when I watched a football game one evening, it was the NY Giants vs somebody that I can't remember at the moment and they lost. (I was rooting for NY). What did I do? I cried like a baby. Then when my Titans lost, I sobbed. Why???? STEROIDS. Don't take them, they suck.

Okay, then I am weaning myself off all this crap, right? Then on Sunday, I had been working and was seated with my laptop on my lap. I stood up and my Parkinson's got me. My balance was horrible and I could feel myself going down. Next thing I know, I feel something crack and my ass is on the floor. My knee is swollen and my foot was throbbing in pain. Oh, it's just a twisted ankle, I think to myself. I try to get back up and stand up on that leg....no, it isn't a twisted ankle, nor a sprain. I mean this HURT.

So, once again I go to the doctor who is trying to make an appointment with a Rhumatoid Arthritus doctor for my vasculitis. "Change in plans, doc...I hurt my foot really bad." So, I go to see a orthopedist today. I roll up my pants leg to show him my foot and he looks horrified. "Oh yeah, I have vasculitis." He puts on plastic gloves and looks like he is going to pass out examining my foot. He starts examining my foot, pressing here, pressing there....nothing too painful.

He goes to look at my x-ray. He comes back and takes his thumb and presses in the center of my foot below my 2nd toe. After he regained his hearing from the shriek of pain I bellowed, he remarks, "Did you take alot of steroid for your vasculitis?" I tell him yes.

"You know that steroids weaken your bones, right? That's probably what happened with your foot. By the way, your metatarcel bone is broken."

So, here I am hobbling out of the dr's office with a big honking foot brace. "See me in 2 weeks, it should heal on it's own," he reminds me.

Part of me is pissed and the other part thinks it's funny. I wish you could have seen the sheer horror on the dr's face when looking at my legs/feet.

I guess this long post brings me to this; I was trying to look on the bright side of all of this and it felt like it just kept coming at me. I was mad about it! But, I was brought up to make the best of things. Which I tried my best.

But tonight, I thought of a section of Roseanne Barr's book when she was detailing a similar situation. Here's the gist:

"I went to the store as a little kid and bought groceries for the family with money my mother gave me. I would walk to and from the store with 2 big bags...On my way out of the store, I saw an old lady that dropped some money and didn't realize it. I put my bags down and ran to get the money to give back to the old lady. I tripped when I ran through a pothole and fell.

It was then that I learned that God hates a kiss-ass."

More Musings Later-

Gearing up for 2009

Hello all,
Greetings from my easy chair with my swollen, vasculitis ravaged legs and feet perched on an ottoman for as much comfort as I can muster. That along with pain medication is helping me to get past the hitch in my get along.

As 2009 creeps up on us, I wanted to be the first to wish everyone a very Healthy, Happy, Wealthy and Wise New Year. We've had some weirdness in 2008, but I'm hoping for better things to come in '09.

Now, for your viewing pleasure, I am posting my newest Presskit trailer. I'll be posting a bit more regularly now that I am not incapacitated in the hospital.

Cheers Everyone!~

Parkinson's has a new playmate...

I have to say in the last several months or more, I haven't been feeling myself. I am not one to focus on things like that unless it knocks me for a loop. Consider my loop thoroughly knocked. Now, when my Young Onset Parkinson's disease being my only malady, my body said, "Nah, I think you can handle one more..." And so it goes. I have what is termed as "Churg Strauss Syndrome," which is a disease that falls under the general heading of "Vasculitis".

This isn't me, but close enough. I broke out in the worst case of rash, sores and other grossness all over my body a couple of weeks or more and it landed me squarely in the hospital for a week. I took every blood test known to mankind (literally) as well as had a biopsy of my rash, steroids on drip and more.

Oh, and did I mention that I was and am on so much steroid that I have to take 2 forms of insulin to keep my blood sugar from skyrocketing from all this? Needless to say, this isn't fun. I go to the dr tomorrow to see how I am doing...the rash, sores and other grossness are not quite so "pronounced" but still having trouble walking and so on. Bleh.

Oh well....I guess my Parkinson's will have a new playmate. Parkinson's, meet Vasculitis (Churg Strauss Syndrome). Where shakiness and bad balance meets neuropathy and pain.

Booyah.

More Freaking Musings Later-