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Eyes on the Prize: Fighting Past Wegener’s Granulomatosis
By Candace Ross
Published by Author House 3/27/09
ISBN: 978-1-4389-5481-3 (sc)
Paperback
“ This is the story of a young woman’s frightening, and eventual disabling illness, which started as eye problems, vocal problems, then turned to lung, joint, skin, and kidney failure.
She was that somehow this was all her fault as a result of an event that had occurred in her younger years, until one persistant doctor got to the root of all the problems: Wegener’s Granulomatosis.
Not wanting to sit around, she decided to put her unfortunate life circumstances toward a purpose of helping others and to go to school, but found that funders were opposed to this dream for many reasons.
She kept her eyes on the prize, and although it was not easy, and oftentimes, suffered health crises throughout collegeand graduate school, did obtain her goals by 1995.”
November 20, 2009
Discuss your teenage years and some of the experiences you had with a bad lifestyle.
Well, as a mental health professional, and one who has experience in doing therapy with mental health diagnoses and addiction we have a saying “You are only as sick as your secrets.”
There were a lot of secrets in my family. This was the 1970’s—no one talked about anything—no Oprah, --we all pretended everything is great. But when you have children, their behavior will manifest with the secrets and “dysfunction” of the secrets of the family.
The bad lifestyle may have been a reaction to some of the things going on in the family (chaos, etc). I now understand that. I understand addiction, and how my behavior could have turned into addiction—at some point habits and behavior cross that line to disease.
I look at Wegner’s as a gift—it prevented that line from being crossed. I was heading down a road there. It gave me a purpose, even if that way of thinking took a while.
Was there anything in those early years that may have signaled a health problem like Wegeners later in life. Specifically weight and headache issues.
I was not a “healthy,” kid. I did not feel “normal.” I had no problems up until about 4. Then I gained a bunch of weight. I remembered being told I needed to diet. But I was not eating. I had congenital hypothyroidism. Every single person on my mother’s side of the family has this, her father did, all her siblings. Yet my mom tells me a doctor back them told her “kids don’t get this.” Today they test babies for this.
Talk about first clue that something systemic was happening. You had eye problems that needed medical attention?
Yes—again and there is no pun intended here, hindsight is 20/20. I had an ophthalmologist, who incidentally is still in practice in the Pittsburgh area, who looked at me and said—this is more than corneal inflammation. I think you have something serious going on.
I was 17. I did not want to hear that. I knew I was feeling sick, but I talk about that denial also in the book—again, growing up in a family of secrets and “don’t talk about that” came naturally to me.
Later, you had reoccurring flu symptoms.
The flu symptoms really began in the fall of 1986. I had been out of high school, and was working both in the restaurant and radio businesses. Radio was my chosen career path. I was so tired, I slept until noon which was OK with the hours I worked. I had zero energy. By this time—I was living a clean lifestyle other than cigarettes.
Discuss symptoms at that time, coughing and muscle pain.
The pain was unbearable-it felt like I had been stabbed in the lung –in my back. I coughed and would go into spasms. I coughed up stuff and when I was finally diagnosed with pneumonia, and sent home three times to take antibiotics and wait for a recovery, and did not get better, my family was getting angry. The anger they had at the hospital was displaced onto me. I lost a lot of weight by this time and had no muscle tone.
Share with us the first time you learned you had Wegeners from Dr. McCollum. How did you take the news? What kind of thoughts were you thinking?
I had been ill and hospitalized at two hospitals by this time. All doctor’s names had been changed so if there is a real doctor out there named Dr McCollum, it is sheer coincidence.
By the time this diagnosis came, I had experienced a thoractomy (which is an “open lung biopsy”) and was on a respirator. I had lost hope frankly, that they were going to find a name for this. They had already been telling me that I may have lupus, several types of cancer, etc. I was on no medication and the pain was terrible.
The doctor did not want me on meds as he did not want the labs to be messed up any more. I was in kidney failure with glomeronephritis.
How did you cope with the physical changes you endured weight gain, scars? It must have been challenging to keep a positive self image.
I was 19 year’s old. Prior to this, I had issues with my self image, but looking at pictures of myself I would love to look like I did at 17, 18. However, to go from 120 or whatever then I dropped to ridiculously low weight while ill and then go on Prednisone and balloon up to 270 was hard. The worst was facial scarring. I later had reconstructive surgery. I would be lying to tell you this did not affect me all through my 20’s and even part of my 30’s and even affected my choice of relationships.
Share some of the ways that the drugs, specifically steroids caused you a lot of problems.
I was on very high doses of steroids. Some of my family thought I was on anabolic steroids. Ha. I wish. I would have rather been able to pump up like Arnold Schwarzenegger.
Any of you out there who have been on these know the challenges. Inpatient they started me on 90 mgs a day. I was discharged on 80 mgs a day. I literally gained 15 pounds the first week of the steroids.
I developed a “buffalo hump,” striae or extreme stretch marks—still present on my skin 22 years later. I had horrible mood swings, including what felt like psychosis. (I did not know these technical terms back then)
I was on steroids alone and with chemo. I was definitely sicker on them. I have only had to take them once since—for a severe allergy, and they still scare me to death.
Interesting quote in your book—You wrote, “I realized I would probably always have to have proof because it was so unbelievable.”
I was given the old “Oh really?” when I would tell some docs and other practitioners later when I looked “normal” again. I decided that the story did sound like it was made up by someone who could be hypochondriacal.
Was it difficult for family and friends to accept what was happening, or to understanding the illness?
Yes-friends were also 19, 20. Some visited once, and I did not see them again or hear from them for 20 years. I did not understand this until recently. Those who did stick by me, I will hold a special place in my heart for them for the rest of my life. I do not know if I could have been that person that they were.
When you have a busy life, with college, maybe having babies, it takes a special person to take time out with a sick friend.
Tell us some of the obstacles you faced from the medical community with your illness. Misdiagnosis, or assuming it's just psychological?
Not so much psychological, but as I mentioned earlier, the big obstacle I found, is one I mentioned maybe later in the book—and I could have written a separate book about this: there is a stigma with low income patients. When I was a low income patient, even though my diction, grammar, and presentation was not typical “street” or “drug seeking,” which is what a lot of practitioners assume. They also assumed that since
I was on welfare/ medical assistance I must have a potential to be pregnant or have a STD. This is why in my 15 years of doing therapy, I make sure that I never make that snap judgment. And I frankly go out of my way to treat the lower income clients kindly, because I may be one of the few who do “Yes sir, or “Yes ma’am” them.
When you are seeking help, you are scared and you do not need to be treated like a dreg of society.
What are your thoughts about getting disability and being eligible for Medicare? Do you feel that patients aren't always aware of their options for medical assistance?
Yes, and again—it may be due to that mentality I speak of in that the people who are getting this or that for free already get so much, why should I tell them about more stuff that they can get for free? I had no idea that for example, I was indeed able to work and make money while receiving SSI.
When I decided to go to work after receiving a master’s, the person on the lone at the social security administration told me I had to pay back my SSI for the month. I was unaware of a gradual way of going back to work. I was unaware of a lot out there for the disabled.
In what ways did Wegners help you find your purpose and give you the motivation to earn a degree.
I felt that no one should ever feel disrespected the way I was at times or alone like I was. That is the bottom line—I was determined to help others in one way or another feel less alone, in their suffering.
In your experience how can vasculitis patient empower themselves to ensure they are getting the best treatment from their doctor. How do you know if you are getting the right treatment for your vasculitis disease.
You are the consumer. You can ask questions. And although the internet is full of misinformation, it also is full of good info. Ask other WG patients about treatment they are getting. Also go “with your gut.” Don’t be afraid to talk openly with your doctor.
I absolutely lucked out with the doctor I call Dr McCollum. He talked to me like a friend and human being and did not sugar coat. I had a doc after him who did not talk to me that way-He was condescending to me. I now have one who also talks to me like Dr McCollum. They are not “prescription happy.”
Talk about your absolute low point after being diagnosed with WEG. How did you come out of it?
Absolute low point was when I stopped all medicine. I sat in the dark for days . I thought about suicide or frankly did not care if I did die. I knew the risks of having a “heart attack”. I even drank—this was years after having a drink. My family was pretty frantic.
My doctor finally told me that I would have to start at “ground zero” (that was his phraseology). I came out of it knowing that he was in my corner when he heard what I had to say. I told him “I won’t and can’t do this anymore.” “This” was the medication—steroids and chemo.
I would say “Don’t try this at home.”
For about a month I was medication free, went vegetarian. Nothing “bad” happened. He promised me he would get me “off” meds as soon as medically possible.
This was in January 1988. By May, I was off the steroids. By October, I was off the chemo. I was not officially in remission until 1990. That is the way I wanted it. I am not sure I explicitly wrote this in the book…again “don’t try this at home.” And I am pretty sure I do say “I am not a physician. Please do not take what I say as medical advice.”
I can count on two hands the times I have eaten red meat since then (a slip maybe at someone’s barbecue, 4th of July). I eat chicken rarely. I am as I point out to people, the fattest vegetarian you will ever meet.
What resources or people or experiences were turning points for you as a patient? What gave you the strength to go on.
In mid 1988, I found NORD through Pueblo Colorado’s information catalogue. I paid 5 bucks for a copy of a copy of a copy for a printout on vasculitis. But someone was kind enough to attach a post-it-note with the Wegener’s granulomatosis support group’s address. I wrote to them. Marilyn Sampson, founder wrote to me many, many times. I began “pen pal” relationships” with many other Wegener’s patients.
How did writing the book help you deal with the illness.
I started this book in 2000. I work …a lot. So I wrote in spurts. A lot was written in 2004, 2005. I was involved at that time with a man who was very supportive and regimented in his schedule. He bought me my first “flash drive,” so I worked a lot at his home, and he suggested that I do at least a chapter each weekend.
I remember writing the chapters (chapters 4,5, 6) that touch on the worst part of my illness when we were snowed in at his house. It was very cold, and snow was up to our knees, but I felt hot reliving the fever, and the lung operation, and the recovery room. I had kept a journal during my illness, thankfully so a lot wrote itself, so to speak.
I felt I had a story to tell. I worked on it little by little, and finally finished it in early 2009. I decided not to go with a large publisher as it is such a specialty area (Wegener's granulomatosis).
I went with a self publisher-You pay to get it published and it is a "print on demand." You do not make a lot of money. I have done little marketing--I have a facebook page. Mostly people who have given me feedback are other Wegener's sufferers or family members. The feedback has been inspiring and even sad. When I read an email from a family member who has lost someone at age 20-something to Wegener's because of something similar to what I went through (the hospital thought it was pneumonia or something like that) it makes me feel so sad for the mother writing it.
The success is not monetary--it is intrinsic. I said to myself, if I could help one person with this book, I will have succeeded. I feel I have succeeded in that respect from some of the feedback I have gotten.
What advice do you have for newly diagnosed patients who are trying to navigate the medical system. How can we maintain the best possible relationship with our doctor and be proactive about our own care?
I think that it is important that newly diagnosed patients try to obtain copies of their records, as I explain in the book, in the appendix, keep good records of surgical and medication histories, and also understand their diagnosis and treatment s that they can effectively communicate. Do not be passive and take the attitude of "whatever you think is best--you are the doctor." Conversely, do not go in and boss people around, because, doctors and health care professionals also do have knowledge and do have experience. Have a healthy curiosity and respect for the knowledge and the expertise they possess.
Conversely, what would you say to doctors treating vasculitis patients. How can they best serve the patient through communication, educations, etc.
I would say that each case might be different. I had a doctor who was cautious in prescribing,and am grateful. he did not ever over prescribe with pain meds. For this I am grateful. I have met some vasculitis patients who have become very reliant on pain meds . I would frankly caution docs to be alert to this. Vasculitis is indeed painful, but it is chronic.
I met one peer who actually said that she feels that she deserves to be on Oxycontin because she lived through Vasculitis. she had one doc who had prescribed this to her for years. When he passed away and she went to a new doc, she was angry that he was unwilling to do this.
As a therapist who works often with addiction, I completely see the doctor's point and support this. When you need that level of pain support one day, you will not have the efficacy,. Use pain control wisely! Docs, do not be afraid to confront us and yet be educated, too.
Sometimes they don’t understand the vasculitis patient. What would you suggest to maintain friendships and relationships?
I always found comfort in writing when I was ill. I also realized that not everyone is going to understand, which is why it is important to talk to others who do. I remember writing back and forth to people (before chat rooms) and saying things like "We are in a club that we did not voluntarily join, but here we are." If you feel supported somewhere, you will not feel that anger and abandonment.
In what ways is your life better, richer, or more satisfying since your illness. What was a silver lining for you?
I would not have had the motivation to help others. I would have stayed in broadcasting. I always had a desire to succeed, for sure, but my life would not have taken this turn to work in health care. I had absolutely none of that calling before getting sick with Wegener's. It was a silver lining in that I may have been led down a more destructive path. I had a history of some destructive behavior. I also eat better. I stopped red meat in 1987, for example. I lived in poverty for a long time because of the illness, and having gone through that, respect my clients who do.
“Candace gives an honest and open account of her life that was full of some dark, difficult times. However, she cuts through the challenges with a positive message that will connect with all vasculitis patients.
I recommend this book to anyone who has gone through the common experience of trying to find a diagnosis while coming to terms with the rare disease.”
Ed Becker, Director, PAN Support Network
“ I read Eyes on the Prize in one night. It was very inspirational.”
Cindy Webber, MPA patient.
