Friday, March 15, 2019

Alie Campbell VP

ALIE CAMPBELL

PORPHYRIA and ME
TYPE OF PORPHYRIA
My story is probably not much different than most. I was misdiagnosed most of my life, sent to psychologists because physicians just couldn't find a cause for my illness. Finally, after an incorrect Lupus diagnosis and a week of testing, I received my Variegate Porphyria diagnosis.
As a child growing up in Tampa, FL, I would constantly complain that the sun hurt my skin and my eyes but "children" were not supposed to wear sun glasses. Today I am rarely seen without them, day or night. I craved sweets and of course "children" should not eat too much sugar! I went to a boarding school most of my life and "they" had the same rules about sun protection and sweets the same as my parents. For reasons like this, I have always wanted to write a book "If you Can't See it...It Must Not Be Real" for all of "us" who are ill but it can't be seen, and so it must be in our "heads"!!
How might I be different? I have always known I am a survivor in life and have tried to maintain a positive attitude. At a very early age, I chose the "high road". I have pushed myself both mentally and physically to go beyond and not make my disease a focus in my life. I worked hard to receive a good education, eventually owned a successful cooperation, raised three step children and married twice. Now I ride and show horses (jumpers), work out daily and volunteer whenever I can (I have recently been helping women coming out of prison to assimilate back into the business world) and continue to look for areas and people to add to my life.
I have not had the best experiences with physicians. I was made worse by a physician claiming I would NEVER meet anyone else with my disease. He was like many physicians, who know very little about the disease and read only one chapter in medical school. Nonetheless, he was a self-proclaimed expert on porphyria with his own "treatments." I am alive today after surviving his dilation toxicity for three years and having a gland removed by his surgeon friend. This left me with permanent double vision at three and half feet out. Thus, reading is almost impossible for me other than my large computer screen.
Next, I broke most of my fingers and had another serious problem. I am going through implant surgery now because of mishandling by a dentist. Then I was left bleeding to death in "after surgery" care, overdosed with morphine, followed by a surgeon who was drunk and performed ovarian surgery incorrectly. I could go on, but I suffice to write this to let you know "we" must be our own advocates in health care. I still seek the good in all I meet and do believe there are wonderfully talented and gifted physicians, but my experiences have certainly caused me to be vigilant over my own care. As for porphyria, I thank God for Dr. Anderson, his colleagues and Desiree.
My attitude is to count my blessings, allow myself some few "moments" of self pity...pick myself up and move forward. We all have challenges in life and sometimes hurt so badly that it is hard to live another day--but we do. We need to share information and stories, support to each other and always keep our sense of humor. I try to look at what I have rather than what I don't have.
In the end it will always be our "attitudes" that drive our lives. As a very wise man long ago told me, "You have two choices in the morning when you start your day" for whatever reason, hearing him tell me on that day changed my life, and I say this to all of you hoping I can make the same difference. Good luck and God Bless!

1 comment:

  1. I have been in relationship with my boyfriend for 2 year now and we were planning to get married soon and all of a sudden he left me for another girl, i really love this guy and never can imagine my life without him. I further tried all my best to get him back but all my effort to get him back in my life did not work out. It was on this faithful day, i came across some comments on a website about this great spell caster called Chief Dr Lucky, so many persons claimed that he help them to renew their relationship and bring their ex back, i had to contact him because he was my last hope. I contacted him through his email and he assured me that in two days time my boyfriend is going to leave the other girl and come back to me and it was a very great surprise to see my boyfriend coming back to me after two days. I am so very happy today that he came back to me and i achieved this with the help of Chief Dr Lucky, and i advice if you need his help too Email: Chiefdrlucky@gmail.com or Whats App: +2348132777335
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Judy Snyder Personal Story of AIP

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