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Winning The Battle

A Caregiver's Poem
A Caregiver's Story, Scleroderma
A Smoker's Story....."I Just Want To Live"
Card of Thanks
Coping With Autoimmunity
Fibromyalgia and Ankylosing Spondylitis
Fibromyalgia Talks To You
Hypothyroidism, Low Thyroid Condition
Induced Platelet Disorder
Life With SLE
Living With Chronic Pain
Lupus Knows No Boundries
Lupus, Scleroderma & Raynaud's
Lupus, I Just Want To Be Normal
Multiple Sclerosis, Diane's Story
Polyarteritis Nodosa, "My Old Doctor Is History"
Polyarteritis Nodosa, Winning The Battle
Pregnancy Loss and Lupus, This Is My Story
Raynaud's Phenomenon: Cold Hands, Warm Heart
Recovering From Depression

Winning The Battle


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).


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