And now for a little VHL humor

• By orangebud
• Posted May 26, 2007 at 3:33 pm

With all the emails from my family regarding the reason why the Hattfield and McCoy fued started. If you do not know this story yet, read this link about the "Hatfield-McCoy feud blamed on ‘rage’ disease, Rare, genetic condition may have fueled violent tempers across generations"

http://www.msnbc.msn.com/id/17967965/

So here is my joke:

You might be a VHL paitent if your friends say "You got a temper like “Old Randal” McCoy!"

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• By beccaloo
• Posted May 26, 2007 at 5:37 pm

I've got one! You might have VHL if you've ever walked into the office of the hospital's main oncology doctor and he just shakes his head and says something like, "Hm. Well now. Not quite sure why they sent you to me. There's nothing I can do."

Or...

if you've ever told your "story" stem to stern for at least 5 or more interns in ONE office visit!

you've memorized all the neurological dexterity tests like touching your thumb to each finger one by one and now it's so familiar it's become a habit and not a test.

your veins run and hide as you approach the entrance to the lab or MRI/CT machine.

you feel like a major league manager but your team has yet to win a game! (man, I miss the ballpark!)

Hm...I'll have to think up some more...

:o)
Rebecca.

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• By Deededell
• Posted May 27, 2007 at 2:52 am

I absolutly love the ball park analogy. How true that is.
How about the fact that your dear mother is insistent that you are going to get so much better one day that VHL will be healed and she and I can run in the Boston marathon.

My rage from VHL (hatfield and McCoy) is no a genetic thing (I dont think) I think its a issue of when people ask me what does VHL do to the body. Heck, I don't know.

Thought I would throw out there that my current doctor thinks I should just go ahead and try drinking red wine. I have never had alcohol in my entire life. So, as of right now I am willing to try anything. Does anyone have a thought about this.

Deede

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• By gale
• Posted May 28, 2007 at 9:07 am

I would stay away from the alcohol. Alcohol affects the blood vessels. There are many other ways to take in antioxidants, which I believe we all need.

Gale

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• By dltabrz
• Posted May 29, 2007 at 12:10 am

Merlot.

Luvyalotz.........Lynn

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• By JennyBlue
• Posted May 30, 2007 at 12:21 pm

Your doctor tells you "Of the top five toughest tumors I have ever excised, you've had two."
and follows it with..."Let's not do this again."

Or He says, "I usually only videotape one or two hours of surgery for training purposes, but yours was just so interesting, I let the tape run. We've got 13 hours of video, do you want a copy?"

You get an MRI back with new massive "developments", that would scare any non-VHL-er to death, and you breathe a sigh of relief & say to yourself... "Thank God, they're benign"....

You start actually understanding some of your "weird" Aunt Tilly (name changed) mania/depression/weirdness.

You just get home from the MRI, try and relax on the bed, and your phone rings... three doctors having already had a conference call.

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• By beccaloo
• Posted June 3, 2007 at 5:00 pm

Along with the comment about a 3-doc's conference call before you even get home from the MRI...

you know how "bad" it is if you DO get a phone call immediately after a MRI/CT/test and it's either: A) the nurse (not the receptionist) calling to TELL you you have an appointment w/the doctotr(s) the next day/tomorrow morning or B) the doctor him/herself saying you have an appointment later that day/tomorrow morning.

And there may be more...

Regarding the doc who told you to knock one back (aka drink some wine)...


I had a doc who believed the pain I said I was having from 4 surgeries and radiaton was all in my head and I was addicted to pain meds. Me addicted to meds; a person who hates pills and had tried in the past many many times to ween herself off the meds. She had me a smidge convinced though. Enough so that I went to not one, but two (and had an appointment for a third) pain clinics both of which said that there is no way to really say how much or even if a person really is in pain and in my case, it made sense if I was and I appeared to truly have physical pain. Both of these clinics were no less than an hour from home, and the third was almost 3 hours away. It was at this point that my husband said, "Honey, I know you're in pain. YOU know you're in pain. Why are you letting this "doctor" (and yes, he used air quotes) tell you you're addicted to pain meds and it's all in your head?" I cancelled the pain clinic appointment and never went back to that doctor again.

Sometimes that little voice in your head isn't so little; sometimes it's that 6ft.2in, 260lb. love muffin you married!

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• By donnab
• Posted July 13, 2007 at 3:08 pm

I love this topic, have to add to it:

.......you correct the nurses and/or lab techs in how to pronounce catecolamines and metanepherines.

.......you read your MRI results and complain to your hubby that the Radiology Doc doesn't know how to spell hemagioblastoma correctly.

.......you see a new doctor or nurse and after speaking with them a short while they ask what field of medicine you're in.

......the nurse you're talking to on the phone asks you to please spell that {pheochromocytoma, catecholamines, metanepherines, hemangioblastoma, vonHippel-Lindau, etc]

......you joke with other VHL patients about how we all seem to come with spare body parts or extras that we can live without. While you and your new friends are laughing uproarously, the other patients and nurses are looking at you all as if you are slightly off in the head.

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• By Batsec
• Posted September 12, 2007 at 2:17 pm

You know you are a VHL patient if you go for your Yearly scans and the radiologist calls in other radiologist and together they freak out about the small cysts on your kidneys and pankreas which you know are there but its nothing to worry about yet.
Or
you have a CT and a MRI in one day as a standard check up (most people i know doesnt know the diffrence between a ct a mri and a x-ray)

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