There’s Doctors and
Then There’s Doctors…
Last night I was at a book reading and signing for Take Me Home From The Oscars. My book is about overcoming adversity more than anything else, so I speak to many different types of groups and organizations. Because this one was general in nature, I adjusted my talk to be about attitude and adversity.
After the reading and questions a woman came up to me asking what medicine had put me into “medical remission.” She had never heard that phrase. She shared her ordeal with rheumatoid arthritis, saying her doctor told her “he hoped he could keep her out of a wheelchair.”
This made the hair on the back of my neck stand straight up at attention. “He hoped….” I had just spoke about all the new treatments and medications and quoted my doctor’s hopeful words “Today, rheumatologist are not needing wheelchair ramps in their offices because patients diagnosed early and treated aggressively are not ending up in wheelchairs.” Obviously this quote struck a nerve with her and that’s why she sought me out to talk.
She, like so many was hesitant to challenge her doctor on his negative approach to her health care. In our continued discussion she said he was older and perhaps a little set in his ways.
The hair on the back of my neck is now silently screaming. I try to keep calm with my answer.
“And you still go to him?”
“Yes, I’ve been with him for a long time,” she replied.
“And how are you doing?” I asked.
“Not good. We’ve tried a few things but nothing seems to work.”
The word that caught my attention was a “few” and brought back memories of my doctor not only trying every drug on me, but then every combination of drugs and all the while offering up hope by saying,
“Christine we just have to keep you going. Keep inflammation down as much as possible because there are new drugs coming through research and they are exciting.”
It was the combination of his never giving up on me and always offering me hope that kept me going, that and many different drugs while we waited. And it worked. He kept my inflammation down as much as possible and I didn’t have any visible damage and then a new drug was available for a research program at UCLA and he got me in the ground door.
Research programs are not easy. They are only for those who have run out of options. But for those people, and I was one of them, it was hope and I went in positive and hopeful that this drug was the one.
In research programs you have to sign weekly memos about someone dying from cancer, someone having a heart attack, or someone suffering kidney failure. Pair that with being told that this person and that person had dropped out and you can get scared. But you have to put a reality check on your fears. Those people weren’t necessarily dead or sicker because of the research program, it could have happened to them without the program, but the program requires everyone be informed of everything. This is a good thing and a bad thing. I just knew I couldn’t let it derail me.
So what did I say to this lovely lady looking for help? GET A NEW DOCTOR.
One of the most important components to good health is having a doctor who understands you, listens to you and is aggressive and cutting edge. You don’t’ want a doctor who stopped keeping up ten years ago, you want a doctor who knows what’s going to happen next year and the year after that.
As we were walking out of the event the woman said to me, “I’m going to call UCLA tomorrow.” I had stated in my speech that teaching hospitals are usually very advanced and on the cutting edge.
“That’s great, and don’t stop until you find the right doctor at UCLA, or wherever else you end up.”
We spend more time researching buying a car, a computer or a phone, but it’s time to put that time and energy in finding a doctor who never gives up on you. Who always offers hope. A doctor you believe in. You can always buy a new car, computer or phone; you can’t buy a new body.
We only get one.
Honor it.
Treat it with respect.
Find the best maintenance man in the business to keep it going.
Info Overload…
Since my diagnosis of Rheumatoid Arthritis I have been on almost every drug available. When individual drugs failed I was put on combinations of drugs. My issues were if a drug worked for my RA, it would take a toll on my system. If a drug agreed with my system it didn’t control my RA. My doctor was very aggressive and cutting edge. His goal? Keep me going without damage to my joints or organs until the new anti-TNF drugs were tested and FDA approved. It was quite the roller coaster journey.
When I picked up my first medications at the pharmacy I did what you are suppose to do. I read the side effects pamphlet. Then I waited for each and every one to happen to me. A slight headache, aha, side effect. Upset stomach, another side effect. I was a side effect wreck always anxious and nervous, waiting for the medicines to attack. As my medicines became stronger and the combinations more unique, the listed side effects increased from a mere paragraph to pages and pages. Pages that tormented me and diminished my attitude in life to “the glass is half full.” Actually on many days nearly empty.
And then one day for whatever reason I read the side effects on the aspirin box: hives, vomiting, difficulty breathing, tightness in chest, swelling of the mouth, confusion, hearing loss, severe stomach pain, dizziness and on and on and on. I had been taking aspirin for years; everyone took aspirin for almost everything. And that’s when I decided to stop. Stop reading the side effects. Stop being anxious and waiting for them to attack my body.
After seven years on the RA roller coaster the new anti-TNF drug became available in a research program at UCLA. Hope. And then the paperwork started requiring me to sign off on almost anything and everything that could happen to me during the trial. As the weeks went by and participants in the trial dropped out I had to sign more papers stating I was aware that someone developed cancer, someone died, someone, someone. Devastated, my glass of life became half empty once again until I realized the person could have developed cancer or had a heart attack without taking the drug being tested. Medical trial laws require that participants be notified of everything and anything that occurs during the trial
I had to stop reading. I had to just sign. My only other alternative was to drop out of the program. Give up hope. I had to stay in. Why? Because I had run out of medications. Amazing how brave and courageous one can be when they have no other possibilities.
Am I crazy? Maybe. But surely more peaceful. The intellectual side of me said, you should read the side effects and understand what may happen to you. My emotional side said why read and live in fear. And somewhere in the middle I realized that if a side effect developed, I would be the first to know it, or my doctor would find it in my monthly labs. It wouldn’t sneak up and knock me down. So I stopped reading. And my glass in life became not just full, but overflowing.
Am I saying don’t read the side effects? Only you can decide. For me, I am happier, healthier and more positive without the reading. Sure, I her bits and pieces of info through social media or magazines and TV. I know that the drug I have been on for 14 years may cause cancer, heart failure, blood problems and more. But I put it in the back of my mind. I have my life back. I am not going to let the possibility of a side effect take it away. I feel RA is an aggressive, mean disease. I can either let it control me or take my chances with the side effects I don’t want to read about. It’s an easy call. Call me crazy but call me happy, optimistic, and for now, in remission.
The Diagnosis
It all started in my feet during a week of make-overs on Live with Regis & Kelly. My feet, in designer heels were killing me. Overdid on the treadmill. Too much running around in the city. I had it all figured out.
Or so I thought. By mid-week the pain had traveled up my ankles to my knees. Sneakers to the rescue. Should have thought of it earlier.
Back in LA at an Orthopedics’ office. X-rays. Nothing. Positive he had missed something I made an appointment with another Orthopedic. Still no damage, even though my legs and feet told me otherwise.
The Orthopedic recommended me to a rheumatologist. I had no idea what a rheumatologist was and he didn’t explain. One exam and blood work later he informed me that nothing appeared wrong with me. He recommended a cutting edge Rheumatologist at UCLA. Denial being my mode of operation, I never thought to ask him what a rheumatologist does or why I needed another opinion. Couldn’t he just give me a prescription?
Walking from the parking lot to the office at UCLA was agony. A very busy doctor came in and examined me, had blood drawn and quickly disappeared saying if I could wait he would give me a diagnosis.
One hour later he announced that nothing was showing up in my blood but he was going to make an educated guess and say I had “Rheumatoid Arthritis.”
Pictures of old and crippled people flashed through my head and tears flowed down my face. How can a fashion reporter on TV have an old and crippled disease? And what in the world is rheumatoid? Devastated I barely listened to him telling me that many times the disease doesn’t show up in the blood for months. Take these anti-inflammatories and he would see me in a few weeks.
Four doctors and all I had was an educated guess. I was positive they were all wrong. I had just overdone on the treadmill. Manic was after all my middle name. I traded in my designer heels for stylish sneakers, stayed away from the treadmill and diagnosed myself. After all, I was a fashion reporter who knew a lot about style. Arthritis didn’t fit into my style.
Sure enough my feet got a little better but fatigue was overwhelming my body and aches and pains were popping up all over. Stress. It was just stress my denial told me. And I listened and believed.
On my second visit my sed rate was slightly elevated. Translated, Rheumatoid Arthritis. Most people would have read up on the disease. Not me, didn’t want to know. I preferred stress.
By my third visit I was in serious pain. Fatigue and sore joints. The doctor changed my prescription for something stronger.
As I look back at my denial and naiveté I realize I was one lucky lady to end up at a teaching hospital with an aggressive doctor. I was a foolish patient. I didn’t want to know, I just wanted to get better, but that wasn’t going to happen, not for a very long time. In fact I would get worse. Much worse. But my aggressive doctor would add, subtract and change my medications, always keeping me well enough to work.
Denial was the wrong path but it was the only one I could get my head around. In hindsight I was so wrong not to get involved in my medical care. I was a compliant patient but an uninformed one. I didn’t want to know. It worked for me only because I had a great doctor who never gave up hope even when I felt all hope was lost.














