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)

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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?"

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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-

I've got the P-Diddy Pity Pot Blues...

Okay, Doc Hollywood (my neuro) said that the honeymoon period of my Parkinson's would end at some point and I would start experiencing more symptoms. Blah blah blah is all I heard. I had a great attitude, I knew that I could get through it just fine, thank you very much.

Okay, I'm pissed off. Can I say that? Can I say that and still have a good attitude? Well, even if I can't, I'm pissed off! Why? Okay, I'll let you into the world of me. A middle-aged woman, with sarcastic humor with PD, scarred up legs from vasculitis and a broken left foot.

Imagine yourself sitting in your chair in the living room tippity typing on your laptop. You are working on a client's memoirs and enjoying the work. Then your beautiful aging beagle puts her head on your knee and looks at you with that "I need to go outside to do my business" look. Then, she starts whining...then yelping...and wait...let me type one more word...then she starts "yelling" by barking loudly. Okay okay! I tell her.

Baby, the aging beautiful beagle

I stand up and I can hear my bones crack. I immediately hunch over because....well, that's what I do. It's part of PD. I feel lightheaded and unsteady...I start clutching furniture on the way to the kitchen. The beagle is running in circles, tail is wagging with such force that it looks like a propeller. I'm coming! I tell her. Wait....grab on to the kitchen chair. Quick, turn it around and sit down I tell myself....wait, my knees are buckling....wait....WAIT! I sit on the edge of the chair and clutch the table trying to sit in the middle of the seat. I can't do it. I'm going down with the ship. CRAP! Ouch! CRAP! I hear a "snap" sound and my foot is engulfed in pain.

Meanwhile, the beagle comes over and looks at you and burps in your face. then she licks your nose and waits for you to get up and let her outside. Damn! I can't move for maybe 2-3 seconds...Finally, I can get up. Crap! my body hurts. You finally situate your body so that you can let the dog out and take a breather sitting on the floor holding her retractable lead.

Okay, that is one burr in my butt. Here's the next:

I'm tired. Have I said that already? I'm not just tired....I'M TIRED. Sometimes it takes all I have just to get my butt out of bed. Which brings me to the next point of contention. I take naps. Not just 1 nap a day...I've taken as many as 4 naps in one day. You're probably muttering to yourself, "No way," I'm here to tell you "Yes Way."

I'm also tired of talking and in mid-sentence my mind goes blank.

• Walking into a room and wondering what for?
• What did you say?
• When did that happen?
• Where was I?
• Huh?
• Why did you do that?
• What day is it?

Well???

More Musings Later, (If I can remember)

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-

P Diddy, Doc Hollywood and Me

About a week or so ago, I had the pleasure of interviewing my P Diddy Doctor, AKA "Doc Hollywood".

You're probably asking yourself, What in the hell is a P Diddy Doctor?

"P Diddy" is my nickname for Parkinson's Disease. Other people think I am referring to a rapper. It's all the same, only I don't rhyme when I have my symptoms.

Anyway, I freelance for Parkinsons Hope Digest and they are running the series. You're probably thinking, I do believe I'd rather watch paint dry than interview a neurologist about Parkinson's. I hear you. But, I LOVE my P Diddy Doctor! And, I will give you the type of conversation we had that didn't make it into the Hope Digest. Photography by: Mindy Schwartz.

Me: When you diagnosed me, you seemed to nail it almost immediately. How were you able to determine a firm diagnosis right away?

Doc H'wood: I'm good.

Me: Don't give me that! I'm not writing that down.

Doc H'wood: Whatever! (laughing) (Then he launches into his diatribe of neuro dialogue).

Doc H'wood: She keeps taking pictures of me. What should I do? Pose?

Dr. Martin Wagner, AKA Doc Hollywood

Me: Act natural if that is possible.

Doc H'wood: Ok. (He continues pontificating about getting honors in all his neurology and psychology classes at Baylor University.)

Me: You went to some excellent schools. I can almost see your brain throbbing from knowledge. Your receptionist told me you went to the "Domenican Republic Brain Academy, specializing in P Diddy disease."

Doc H'wood shoots me a look.

Me: Kidding. Take a joke, Doc! (He is laughing at me)

Doc H'wood: Nice shirt

Me: I think of you each time I wear it. It's better than wearing the other one I have...

Doc H'wood: What happened?

Me: I wore my 'I'm not getting jiggy with it, I have Parkinson's" shirt to the Opryland Hotel. I arrived at peak blue hair time (senior citizen time=4pm). They were PISSED. They followed me all over that hotel and fussed at me! I couldn't convince them I had the disease! They thought I was making fun of them. Jeez, if you can't laugh at yourself....

Doc H'wood: I wished I could have seen that.

I shoot HIM a look.

Me: That's why I like you. I remember the first and only time I complained about having Parkinson's to you.

Doc H'wood: What did I say? I don't remember.

Me: I was moaning about it one day during my appointment and I noticed you weren't saying anything. I looked up at you and you handed me my scripts and said, "Yeah, it sucks." I left your office and sat in my car and laughed until I cried!

Doc H'wood: You're weird. Not really, you crack me up!

Me: Really?

Doc H'wood: No.

More Musings Later-

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UPDATE: My sister's cancer HAS NOT spread! We are all faithfully praying for her and will continue to do so. I would be grateful if readers of this blog would pray, send good thoughts, etc. for her as well. Read about her journey HERE: "Every problem has a gift for you in its hands."

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The Hilarity of Parkinson's Disease

As you may or may not know, I was diagnosed with Young, Onset Parkinson's Disease several years ago. I'm now to the ripe old age of 45, and feeling every year of it cubed.


That's not to say that I don't like to have a good laugh at my own expense! I've invested quite a few dollars in t-shirt collections such as:


"I'm not getting jiggy with it, I have Parkinson's disease",

or another favorite that is short and concise:

"Parkinson's Sucks"


I finally decided to stop wearing the first shirt because all the older people at the mall thought I was making fun of Parkinson's patients. The blue hairs get mighty pissed if they think you are dissing one of their own. I can't wait to be a blue hair!


Here are some of my favorite Parkinson's moments (all true, mind you)

• I'm seated writing...the doorbell rings and I get up to answer it. I open the door and see the mailman and pass out (only for a few moments). When I come to, he leans over and says, "Sign here please."

Now THAT is funny!!!! I couldn't quit laughing and did just that as I continued laying on the floor. (fainting is a PD symptom)

• I'm at the grocery store with my partner and I'm walking like I'm drunk. She offers me the basket to hold onto as I hear a couple behind us whispering very loudly, "Oh dear, she is drunk as a skunk! It's only 1:30 pm! That is shameful!"


• I started talking to my partner rather loudly. "Can we go back to the bar now? My vodka buzz is wearing off."


• I'm at the neurologist's office. He has a sarcastic wit about him and I'm moaning and groaning about new symptoms. I keep waiting for him to say something soothing and he looks at me and deadpans: "Whaddya want? Parkinson's sucks" and he smirks. Ya gotta love'em!


• My neurologist's phone number is programmed in my phone. When I dial it, or he dials me, Michael J. Fox's picture is displayed.


• I went bowling with my partner one time and when I let the ball go down the lane, so did my body.


• When you're drunk, no one knows it.

I gotta go, my neurologist is calling me...Later