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!!!

www.womenshealth.gov

Owww

I'm having an 'ow' moment. And if my friends in my online autoimmune support group offer indication, they are all having 'ow' moments, too.

Those of us with Lupus, Fibromyalgia, Rheumatoid Arthritis, or any of the other hundreds of diseases and disorders that cause one's body to attack itself, we are all in this boat together. Living with these painful reminders of ourselves becomes rote. Most of us don't even feel the pain any longer unless we are reminded by a bump of the elbow, a twist of the wrist, or a simple kneel.

But then there are the days or weeks or months where the pain just doesn't seem to let up. Colder weather certainly affects us plus stress and overdoing anything. It's really hard to be a Type A personality with an autoimmune disorder!

My friends in the online group each have their own story, some that break my heart. Yet we all come together to support one another and offer guidance, advice, or simple and virtual {{gentle hugs}} to feel community - that knowledge that we are not alone in our pain.

As I plan a trip South where I will drive 12 hours over two days, I start to panic a bit. I put together my kit of essentials - car seat pillow, neck support pillow for sleeping, heating pad, BenGay or BioFreeze, special foods for my gastroparesis, ibuprofen and, of course, all my prescribed medications to last the up to two weeks I will be away. I also visited my local library to get two long books on CD. Listening to a book while driving keeps my anxiety level down and makes the trip more tolerable and even enjoyable. I do like my alone time.

I stay at the same hotel every time I make the trip so the management staff know me. I bring my dog, Shadow, and he provides comfort (and lap warmth in the car sometimes) but also forces me to walk which is a tremendous help to 'oil' my joints and something I haven't been able to do in the frigid cold in New York of late. Like the Tin Man in the Wizard of Oz, I see myself crying out: "Oil can. Oil can."

And then it's 'ahhhhhhh.' I've reached my destination - a condo near Myrtle Beach, South Carolina. Shadow practically leaps out of the car when I roll down the window to smell that we are there, in my wonderful world of warmth and exercise and oceanic beauty. This trip I am hoping to finally meet Dr. Dalal Akoury, the holistic practitioner who cared so tenderly for my dear friend and colleague, Susan Murphy Milano when she battled Stage IV cancer last year and whose book Holding My Hand Through Hell is a must read for anyone who went through childhood trauma of any kind. Susan's experience is all the proof I need that childhood maltreatment can lead to adult physical illness, a thesis my own memoir supports.

On this trip, I go alone and know that I have many friends there who can come to my aid, if needed. That, in  itself, is a great comfort. Laughing and joking with them when we go out for fun is great medicine, too. I just ask them not to hug me too hard when I arrive. When I depart, they can hug me as hard as they want because I suddenly feel 'cured,' free of most of the pain that I've banished while down South. The drive home is easier, too.

It's no accident that my husband and I purchased a condo within walking distance to a hospital. I've taken myself there at least once to get a bolus of steroids or pain medication. In years to come, they'll all get to know me, too, just like the ER staff at my local community hospital in New York. I've learned to manage myself and my disease and my pain.

For those of us with chronic illness, a trip like this is huge. My similarly-afflicted friends will understand and, perhaps, those who read this will understand that most pain is invisible - that we don't mean to isolate ourselves, be cranky, or cry. Sometimes it's just the pain - that damn pain. Bon voyage!