Wednesday, March 20, 2013

One for the books

This Book



Years ago my mom took me to the orthodontist.  I had an unusual problem with my teeth.  After inspecting my mouth, the orthodontist excitedly proclaimed that my situation was "one for the books".  So they photographed my freaky teeth and kept it in their books for future reference.  The whole thing was rather embarrassing, and kind of humiliating. But ultimately they were able to fix my teeth situation, and show "before and after" pics in their book of bizarre teeth. 

Every time I do a google image search for any kind of health disorder, I feel bad for the people that are on display for us to see.  But I suppose anyone that agrees to be photographed is ultimately helping mankind by letting others view them, and by letting experts learn from them.

My dad has been having a rough time lately.  Several months ago he noticed a wart-like thing on his chest.  He went to the doctor and they performed a biopsy.  While waiting for test results, more of these spots showed up on his chest.  Then on his face.  And then all over the place.  And then his skin turned a reddish-orange color, thickened, and began itching, burning, and flaking/peeling everywhere.  Several doctors and dermatologists reviewed his case and took biopsy after biopsy.  His condition worsened by the day, and he was pretty much photographed every time he went in for a doctor visit.  Not fun.  Rather humiliating.  After many tests, much time, and much research, the doctors finally figured out that my dad has a rare and painful skin disease, one called  Pityriasis Rubra Pilaris.  If you do a google image search for this disease, you will see very scary pictures.  You might even see pictures of my dad.  :[

One of my dad's doctors recently took a few moments with my dad to "thank him" for the privilege of treating him.  ?!   He said it was "an honor" to treat my dad, as only 200 or so people in the United States have this particular disease, and most physicians never get to see it in person. Uhhhhh, high five?  You're welcome?  Sometimes doctors can be such clods, but I know they mean well. 

Sorry to leave you with a message, (does anyone else get annoyed that every Kardashian episode seems to have a MESSAGE or a MORAL attached?!  ugh)  but I guess all I am saying is that we should be grateful to people that offer themselves up for scrutiny and research.  There are so many weird and scary diseases that can just happen out of the blue.  My dad has been pretty healthy up until recently (welllll, he has had skin cancer, a stomach ulcer, and back troubles, but all-in-all still pretty healthy), but this crazy disease just came up on him at age 70.  He is doing the best he can, and we are all hoping his situation improves soon.  Hopefully. Fingers crossed, as it is so hard to watch someone you love enduring terrible health issues.  More pictures, more exposure, and more research of the disease could only help, so we will see what happens.


P.S. If you want to learn more about this disease, this PRP Support Group website is extremely helpful.  And this interview with recovering PRP patient Ralph E. Gilmore tells it like it is. 



15 comments:

Dancing Branflake said...

I'm so sorry about your dad. I hope they find a cure or relief.

And seriously. Kim always has these 'morals of the story' and I'm like, "phef". Whatevs.

Cheryl Ann said...

I'm sorry to hear about your dad. I hope they're able to ease his pain and quit patting themselves on the back for being able to treat a one in 200 case!

doctors can be such assholes, which is 100% the opposite of what they stand for, so i totally don't get where that dumbass attitude comes from.

GFS said...

I hope you father gets better. Gosh, if it's not one thing , it's another the older we get.

As for the dr who thanked your dad, I would have been like "ummm, you're welcome?"

Annabelle Archer said...

awe, honey, that sucks! im sorry your dad is going through this. i know its stressful for your whole family.

big hugs

nicole said...

i'm sorry. it's awful to watch someone you love suffer. i hope he gets relief soon...

Mandy_Fish said...

I hope your dad gets better soon or they find some sort of cure for it. It looks extremely painful!

Maegan Tintari said...

I mean, that's a really good point and optimistic way to look at this disease {I just clicked the google images link. OUCH!!!} I hope they find a way to ease his pain and cure this thing fast. :(

Trissta said...

I would tell your dad to send his doctor a bill in order to treat him. If it's such a privilege, he should be getting paid, right???? I hope he gets better soon, but I'm also hoping that it's not your dad's junk that I just saw all over google. I might be scarred for life.

Seriously, though, all jokes aside. I feel for your dad, and for you. It's no fun going through things like that.

Much Love,
Trissta

Kristine said...

Oh! I'm so sorry about your dad! I hope he gets some relief and doesn't have to deal with too many dumbass doctors. Some doctors really seem to have lost the art of the bedside manner. Watching a loved one go through something like that is so hard. Hope you are collecting on lots of hugs. Sending you and extra one.

cerebral e said...

I am always so humbled when patients in their last days and weeks of life let medical (and nursing) students spend time with them. Same as people who sign up for clinical trials even though it's too late for them to benefit from any treatment. They just want to make medicine (and doctors!) better for others in the future. Awww.

PS hope your dad is okay.

PPS I have a freaky rare eye condition called multiple evanescent white dot syndrome and whenever I tell ophthalmology friends they get really excited and treat me like some sort of celebrity.

WendyB said...

Your poor dad! I hope it goes away as mysteriously as it arrived! :-(

Chic 'n Cheap Living said...

Oh man, i'm glad they at least figured out the issue and hopefully are treating it appropriately.
It is true though - we document, learn, and make it easier for future generations right?

xoxo,
Chic 'n Cheap Living

Kathryn said...

Sorry to hear that about your Dad. I got itchy just looking at the pictures. The best way the doctors could thank him is not charge him.

While no one wants to be guinea pig,if it would help someone suffering feel less alone in their plight, I guess I would be ok with being photographed and posted online except I wouldn't want to be buck naked.

Kitty Stampede said...

awwww....your poor pops!!! dammit stupud random health issues that crop up. I hope he gets past this ASAP.

and I know what you mean by stupid morals at end of stories, etc. But I can be a bit of sucker for them sometimes, I guess it's all on the approach and as long as it's not too too lame or preachy. Sometimes we all need a 'feel good' lesson... I feel like I might be a little more sensitive after having baby though...heehee...ah well. She totally just farted really loud...SNORT. she is a tooting machine!!!!!! :P

Tom Tuttle from Tacoma said...

praying for your dad. i hope he's taking it ok.