Never have I been so afraid as when the doctor told my husband and me that the
biopsy he took proved that I have Polyarteritis Nodosa. That was the beginning of a rough ride. Not knowing what
that meant, we searched the web sites. There we learned that this was a rare and dangerous disease. The treatments
weren't so hot either.
That was in the fall of 2000. What a way to begin a new century!
By Christmas I was beginning to swell up form the prednisone. At that point I was just chunky and my clothes still fit.
I was over 60 and becoming overweight. The Cytoxan had not curbed my appetite and the prednisone was making me hungry
a good bit of the time. So far I really wasn't sick. However, there were some big angry looking sores moving around
my left leg. With some topical ointment I was able to with stand the discomfort pretty well.
As the winter months in South Dakota progressed so did the Polyarteritis Nodosa.
The sores continues to spread and heal over. First it was the front lower leg. It moved to the sides then to the
back lower part until it reached above the knee. The amount of prednisone was increased as well as the Cytoxan.
I can remember one day when all hell broke loose on my leg. I called the clinic to let them know that I was coming in
and needed to see the doctor. They were not happy with me but I was in too much pain to give a rip.
When we arrived at the clinic, we latched onto a wheel chair and wheeled me up
to the 4th floor to the rhuematology department. They were ready and waiting. I first saw a Nurse Practitioner.
I dropped my slacks, she took a look and headed out the door to return in a few minutes with the rhuematologist. From
that point on I was a very important patient.
Eventually the other leg was affected--from ankle to hip. I guess if I
hadn't had a hysterectomy there was a possibility of it affecting those absent organs. Never have I been so pleased
to have been through a major surgical procedure. The prednisone and Cytoxan were constantly increased until I was at
80 mg of pred. and 60 mg. of Cytoxan for quite some time. Eventually things began to slow down. An angiogram showed
that the liver, kidneys, spleen, etc., were not affected. That was a sweat-er, I'll have you know. (Not the sweater
that is clothing.)
Over the next 2 1/2 years I was pretty isolated. My husband set me up with
a great computer station overlooking the East lawn. Then he got a local green house to put in a large area of that lawn
into ponds, waterfalls, and perennial garden. I spent many hours learning all that I could by surfing the web.
I watched the flora and fauna of our 10 acre home site. Many naps were taken on the photon (sp) in the computer room.
My dog shared the room with me. She learned to sit in my lap as I banged away at the keyboard.
My hair fell out. It was a traumatic day spent in the shower pulling out
globs and bawling. My husband stood at the door of the shower and collected the hair globs as I pulled them out.
Foresight had proved a boost since I had a wig all bought, cut and styled. My hairdresser spent some time helping me
get ready for the inevitable.
My big question was: "Was I going to die any time soon from this wild and whacky
disease?". Well, I didn't. Somewhere I read that there was a 5 year average life span for people diagnosed with
Polyarteritis Nodosa. If that was a true statement, I should never have gone into a complete remission.
I am off all medications. The nasty sores are gone from my legs. All my
hair is back and sadly just a gray as it was before. I am left with a condition known as peripheral neuropathy that
is a left over gift from the Cytoxan. It started with a mild numbness and tingling in my toes. Several months
later it became a sharp, burning pain throughout my feet. It is a frustrating and painful nerve condition. The
pain in managed with a couple of medications and a narcotic. Had I known about it sooner, I may have been able to prevent
this from getting out of hand. But, it's better than having full blown Polyarteritis Nodosa. (sometimes at night I don't
think so).
I tire more easily than before I got sick. I can't do the traveling that
I'd like to do. I'm thankful that I was able to get to Germany, Ireland and many states in our own country. I
have many pleasant memories stacked up. Pictures tell the story. Now, I have a second puppy that drives us dingy.
(My other companion went to sleep) I enjoy reading, doing things with the grandkids and being able to leave the house
(yard) when I want to. I still have the lovely view of water falls and enjoy the view from my computer.
And so at age 66 I've been there done that...and then some. Soon five years
will go by and I'll still be alive (with a little luck).
