Wednesday, February 6, 2013

Doctor, doctor

It sure was a smack to my head in late 1995 when I learned I had Stage 4B cancer plus Lupus just a few weeks after my trusted doctor of 10 years told me: "You're a perfectly normal, healthy young woman. Go live your life." 

But I knew something was wrong and defied him. Lucky me!

A week before that, he told me my myriad of troubling symptoms were 'working mother stress syndrome.' He took a chest x-ray in his office and drew blood. The blurry chest x-ray has long since disappeared (during the time I tried to sue him for malpractice) and I did have my say with him just once when I conspired with a sympathetic nurse who paged him  to come to the ER during one of my many visits that upcoming year where he was surprised to be led into my room. Alone with me (and caught) he said he "made a mih...," never finishing the word mistake. He asked me if he could continue to help with my care. I told him to get the hell out.

Needless to say, I have trouble trusting physicians.

All these years later I am blessed to have lived through the emergency tracheotomy, the blood and platelets transfusions, the Lupus response to cancer, Vertigo, the many, many complications of the chemotherapy and treatment and I thank God every day. Yet when you are forevermore immuno-compromised AND have an auto-immune disease AND have major ancillary health problems due to the aggressive chemotherapy AND continue to 'light up' during your frequent PT scans and have surgery after surgery, AND suffer flares and try to get help, you've got to trust someone, somewhere in the medical community.

In my online auto-immune support group, there are  dozens of us who are ill but still have to fight for proper care. The spectrum of autoimmune diseases/disorders - from Rheumatoid Arthritis to Fibromyalgia; Sjrogen's Syndrome to Hashimoto's Disease;  Lupus to Celiac's Disease is vast. And to be reminded each and every day that your own body is attacking itself is something with which we must make peace.

I saw 12 rheumatologists before I finally got my Lupus diagnosis and treatment. These were not your run-of-the-mill doctors, either. I saw at least three who were prominent heads of rheumatology departments at renowned New York City hospitals. I was trying to get at least two who would agree with each other. It never happened. They all had different theories but - at least once - my blood work revealed the truth. I had a treatment plan and it gets tweaked every year by my local, selected treating physician.

My group of similarly-afflicted friends want to address an open letter to doctors who treat autoimmune disease. For their sake (and mine), I'm going to take a stab at one here:

Dear Doctor:

I don't feel well and am in pain most of the time. My autoimmune disease seems to be winning the war and the medications are causing side effects that are nearly intolerable, including insomnia. I am not stressed out (other than worrying about this illness) nor am I hormonal or a hypochondriac and it's not 'all in my head,' I am truly in distress.

While prescribing steroids always works in the short-term, it is unreasonable to expect me to take high doses for a long period of time during which I will gain a tremendous amount of weight and develop Cushings Syndrome. That hurts, too. It feels like I will burst out of my skin. I need a treatment plan that looks at the whole me - all of what my physical body has been through, the side effects of the medications you and other doctors have prescribed, and how my mental health is affected as well. 

I know treating people with autoimmune disease is more an art than an exact science but I am asking that you listen to me as often as I need you to hear what I have to say. I am asking that you keep an open mind while also remembering any of my own medical trends you might have recorded during my care. I an asking that you keep current on research or studies that might help me. I am asking that you understand that I am not asking for a miracle, just some relief that will last for a time. And when that course of action doesn't work anymore, you adjust with the utmost of care. 

I'm having a really hard time with all of this and need you, most of all, to be on my side. I appreciate all that you do and look forward to continuing to work with you. 

With my thanks, 

Your Patient 

Now, in my opinion, if a doctor does not receive this type of letter with grace, it's time to switch and keep searching until you find one who does. And if he or she stops being gracious, move on again. A lifelong issue requires continual change. If a doctor is stuck in a rut, leave. It's critical to follow this advice and I know we're tired and fed up. But we want to live alongside our loved ones without fear, free of most of our aches, pains, and hospitalizations, and with confidence that those who are treating us are medically sound. This is my too long blog post for today.

By the way, the lawyers handling my medical malpractice case dropped it when they realized I would live! They told me the only reason they took the case was because I was expected to die and I now had no case. Lucky me!!!


  1. Amy, I sympathize with you. I have, for the past two and a half years now, been to cardiologists, nephrologists, pulmonologists and gastroenterologists. None of them can explain my rapid weight gain, or the reason that my BP was all over the map for two years, or why my kidneys keep threatening to fail. I suspect it had something to do with the chemicals I was exposed to in Vietnam, but I have no proof. I had a very long conversation with my cardio last year, and he said to me "Well, you know medicine is not an exact science." Nice of him to admit that, after all these years and thousands of dollars spent. Hang in there, Amy. You are not alone in this.

    1. It's a tough row to hoe but we must carry on. I have met an amazing doctor who is working with integrative medicine and accomplishing great things. Check out her website at Thank you, John. Feel well whenever you can. <3

    2. I will. You stay well. The world needs your mind and your dedication. <3

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