Pam's Patio: My Story

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There's an anonymous quote in a little book of quotes I bought the other day. Someone wise was quoted as saying, "when you get to your wit's end, you'll find God there". Although you can find God before you make the journey to your wit's end, if you happen to pass up all the obvious clues along the way, once you get there He is unmistakable. I had always thought I knew God, but when I reached my wit's end I met Him.

Sometimes in life inexplicable things happen. In 1987, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD), (which has since changed to a diagnosis of Lupus). The doc who broke the news was a friend. He had tears in his eyes. He told me the course of the disease could not be predicted and my life was going to change. I would have to slow down and in fact, learn to pace myself. He said my friends might not understand how sick I was because I would not look sick. THAT came true!!! If his tears didn't give me a clue about how sick I was, it should have been clear from what he said to me. But it didn't sink in. In retrospect, I guess I didn't understand because no-one expects to be struck by a chronic life-altering (and sometimes life-threatening) illness. When most of us have an ailment, we go see a doctor and get a prescription or (heaven forbid) have surgery. Then before we know it we are well again and return to taking health for granted while life goes merrily on. Sorry to tell you folks, but sometimes it doesn't work that way!!!!

In case you are wondering, I am coming to the part about reaching my wit's end. Now I won't let this degenerate into a woe-is-me diatribe, because I don't feel that way at all. But let me tell you about my life after diagnosis. When I wasn't at work I was in bed resting so I could go to work. (My doctor didn't want me to work and more than once commented he did not know how I could work). It was thru sheer stubbornness and the grace of God that I continued working thru my illness. Most people would have quit. My life became a maze of joint stiffness, inflammatory myositis (intense muscle pain), extreme fatigue, low-grade fevers, weakness, sun-sensitivity and heart and lung problems. (Not to mention the depression which accompanied coping with all this or the myriad of side effects I experienced from the drugs used to treat Lupus).

All those symptoms mean nothing to a healthy person like you. To me it meant my life took a hard left, crashed and turned upside-down. It meant living with constant pain and shortness of breath, experiencing frightening episodes during which because of over-whelming fatigue and weakness, I literally could not get out of bed, sometimes for hours at a time and could not even lift my arm to answer the phone on my bedside table. It meant not making plans with friends because I never knew when the fatigue would strike.

In fact, I soon learned that healthy folks don't understand after the third or fourth time you cancel on them because you aren't feeling well. It is hard to cope with both a chronic illness AND the folks in your life who don't understand the illness because they can't see it. Truthfully, it is hard for healthy folks to understand how UCTD, Lupus and other auto-immune disorders basically run your life. We don't look sick so it is hard for healthy folks to understand we are seriously sick. This is a fact of life which makes dealing with the illness even harder.

I found myself at 35 years old wondering if I was dying, some days wishing I would, some days worrying I would end up in a nursing home unable to take care of myself and certainly facing disability and perhaps, the loss of my home (and my pets).

I have been more fortunate than most others with connective tissue disease. When I reached the point where disability was looming overhead I had the good fortune to hear about Dr. Stanislaw Burzynski. Dr. Burzynski is the founder of the Burzynski Clinic in Houston, Tx. and the developer of the drug Antineoplaston. He is running numerous FDA-approved clinical trials treating certain cancers, HIV and Auto-Immune Disorders (Sjogrens, Lupus, UCTD among others). I have been on antineoplaston therapy since 1994.

Within a couple years of starting Antineoplaston therapy I was able to get off nearly all the drugs with which I was being treated, even prednisone (despite being considered to be steroid dependent). Today, in addition to Antineoplaston, I only require my inhalers (for my lung problems) and protonix for my GI problems. Although I am not totally well , thanks to God, Dr. Burzynski and Antineoplaston my symptoms have greatly reduced. Low-grade fevers, joint stiffness, inflammatory myositis, over-whelming fatigue and sun-sensitivity are no longer a part of my daily life. I have most of my life back, though I still deal with a fatigue problem. In fact, I have had to drop to part-time at work due to fatigue. STILL THERE IS NO OTHER DRUG WHICH COULD HAVE GIVEN ME BACK ANY PART OF MY LIFE IN THE WAY THAT ANTINEOPLASTON HAS. Keep in mind the best standard treatment for Lupus could offer me, was to attempt to suppress the disorder with drugs that made me as sick as did the disease.

Antineoplaston has restored some normalcy to my life and given me back hope and some choice. I am hopeful one day soon the FDA will approve this drug, so everyone afflicted with a CTD, Cancer or HIV will have access to it and the hope of a second chance at life. I thank God everyday for my second chance. There is no reason that i know of, for the FDA to sit on this drug, it is my understanding that it meets and exceeds fast track criteria for approval.

ANTINEOPLASTON THERAPY LINKS:

Burzynski Patient Group

Burzynski Clinic

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