Monday, December 14, 2009

- I Didn't Sign Up For This

Okay, do you guys really want to know this stuff, or should I stick to inspirational, deep blog-type postings? Well, for those of you who love ER & General Hospital, I will thrill you with medical details. I was diagnosed today with small vessel vasculitis. You can click on that title to see what Wikipedia has to say about it, if you care.

I always think it's so cool to get a diagnosis of something that is difficult to pronounce and is rare; something people have never heard of. It all fits in so nicely with the life of a Drama Queen. Who wants to be diagnosed with something common when you can be diagnosed with something rare and exotic!?

Anyways, that's what the bright red rash is on my legs and on Other Parts Of My Body Which Will Go Unmentioned. Here I thought it was just some random cool rash, but no, it's - everybody repeat after me: small vessel vasculitis. You heard it here first.

Or we can just call it SVV, even though probably no medical person calls it that, and when you write it that way, it looks kinda like "SUV", which is a type of vehicle, as we all know.

Come to think of it, it kinda feels as though there is a vehicle sitting on my legs. One of the side-effects of SVV is swelling of the joints, including my ankles, wrists, elbows and knees (as if you didn't know what I mean by 'joints'). This meant that today, instead of walking around the hospital from appointment to appointment, I had to be chauffeured in my Very Own Personal Wheelchair, because walking was just an excruciating experience.

As the day progressed (not that any part of today remotely resembled 'progress' to me), my fatigue levels caused the joint pain to get worse, which meant that I was slowly losing the use of my hands. The wrists didn't want to rotate in any direction at all, my fingers felt like sticks, and it became more and more difficult to hold onto things.

The bright side of all this? I now have a sense of what people with severe arthritis feel like, and it's simply abysmal. I don't know how anyone can stand this on a chronic, daily basis. The pain is just terrible.

So, they couldn't do Chemo #2 (oh, well - boo hoo), and I'm now on steroids for a week. We'll re-evaluate next week to see if I'm ready for the next chemo, and they may have to change the type if they think it was the cause of this condition.

What else causes this? It's viral, so it could be a number of things. My view on this tonight? Who knows, who cares? I just wanna go to bed.

Despite everything, Liliana and the crew bounced along with me everywhere: Blood tests (twice), Oncology (oncologists said this condition is rare & referred me to: Determatology (where the rash & swelling got diagnosed), Ultrasound (checking that my puffy, swollen right hand was not a sign of lymphodema - a side-effect of lymph node removal), Oncology again (to check in with my fave oncology nurse Kathy and get the clips from my Port-A-Cath incision removed), and X-ray (to see if the Port-A-Cath is installed properly in my chest).

My new friend Mo caught up with us in Oncology and brought along a lovely Christmas card (the picture on the card is the Virgin Mary playing a banjo or a guitar, I think) and some DELICIOUS banana bread. Thanks, Mo - you rock, girl!

And again, despite everything, Liliana and her film crew and I managed to have many laughs, because Liliana and her film crew are all just really cool people. We joked around with random people in the hallways, introduced ourselves to total strangers, and I plunked out a tune on a piano by the elevators that workman were trying to wheel out of the hospital to get a much-needed tuning.

We listened to an interesting sales presentation by a nice Medic Alert saleslady who said she'd like to buy one of my CDs! I offered to swap her a CD for a Medic Alert bracelet, but she graciously declined.

We ate ham sandwiches in less-than-clean corridors, blocked entryways with camera, sound and other assorted equipment, stopped traffic with our celebrity-like looking presence, and just generally caused trouble wherever we went. So that part was fun and certainly distracted me from stuff!

And through it all, George was just amazing and efficient as usual, running from department to department collecting necessary paperwork, lining up appointments, pushing my wheelchair, carrying my purse, bag, water bottles, winter coat, and a dozen other things, and never complaining one bit. He's simply a great caregiver and I truly appreciate him.

Well, my SVV rash is feeling awfully weird (it's very raw in parts and I can feel it pulsating in time with my heartbeat, if that makes ANY sense to anyone - very weird), so I guess I'll call it a night and go to bed.

Good night!


  1. Wow, Wendy. You definitely didn't need this on top of everything else you are dealing with. Poor you. Well at least now you know where that rash came from. I'm so glad George is taking such good care of you. Please give him my best. Looking forward to seeing you at church this Sunday. Take good care my friend.
    Wendy G

  2. Hi Wendy!

    I love your attitude and your statement " Who wants to be diagnosed with something common when you can be diagnosed with something rare and exotic!? "

    It shows to me a tenacity for life and an excellent point of perspective.

    My name is Lew Newmark, and a year ago this past June, I was diagnosed with the rare vascular disease Churg Strauss Syndrome.

    Welcome to the " Rare Vascular Disease Family ", and I think you'll be a great addition. I will keep up with your blog, and I wish you nothing but the best for your future.


  3. Hi Wendy,
    Wow...There is nothing else to say! Your are an inspiration to all who has had to battle this terrible health issue. My sister-in-law Julie sent me the link to your blog and suggested I read it. I was diagnosed with breast cancer last February at the age of 31. Since then I have had chemo, masectomy and radiation. I am cancer free as of now and enjoying every minute of every day. Your ability to laugh and find humor in this situation is wonderful. I know how hard that can be at times but I do believe that laughter is the best medicin. Looking forward to reading more about your journey.
    Best of luck