Chronic Tonic?

Ugh. Yesterday I had the displeasure of shelling out another $400 in co-pays for three prescription medications. And that's just for one month! On average, my monthly co-pays are about $600 for the seven total pharmaceutical meds I take, or $7200 a year.

Add the new supplements I'm taking (10) and two compounded medicines and I don't even want to calculate the cost of being chronically ill. But the U.S. National Center for Health Statistics (part of the C.D.C.) does. They explain:

• More than 75% of all health care costs are due to chronic conditions.
• Four of the five most expensive health conditions (based on total health care spending in a given year in the United States) are chronic conditions.
• The top four chronic illnesses are heart disease, cancer, mental disorders, and pulmonary conditions. 
• Cancer is the most expensive and heart disease the second most expensive.
• A 2007 study reported that seven chronic diseases – cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions, and mental illness – have a total impact on the economy of $1.3 trillion annually. 
• By the year 2023, this number is projected to increase to $4.2 trillion dollars.
• Chronic disease reaches into our homes, our hearts, and our wallets. 

No kidding!

But when they cite the trillions of dollars of impact on our economy, aren't they talking about us? It's the money WE pay that keeps these medical industries in business, particularly the pharmaceutical companies. 

As my readers know, I embarked on a journey of integrative/functional medicine about six months ago. Of course, it started with changes to my diet and continues with therapies and supplements that, according to the Institute for Functional Medicine is "healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle."

Moreover, "it emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative." It's personalized medicine that seeks to not only discover a diagnosis or diagnoses but also seeks to answer the question: Why does this person have this illness? 

They summarize: "The answer to this question is revealed by discovering the antecedents, triggers, and mediators that underlie symptoms, signs, illness behaviors, and demonstrable pathology. Further, medical genomics can identify the phenotypic expression of disease-related genes and their products, affording another lens through which to view illness. Chronic diseases cut across multiple organ systems, and this calls for a systematic method of viewing each patient."

Well, isn't that what I've been saying in much less clinical terms? The toxic stress of my childhood experience pre-disposed me to develop serious and chronic illness. Finding a solution or combination of solutions to live a quality life is the never-ending challenge. 

So, I'm straddling the bridge right now - still following 'doctor's orders' and taking traditional treatments and participating in never-ending tests yet also incorporating my integrative/functional medical doctor's orders and adding  dietary supplements and lifestyle changes while keenly focusing on what meds I can afford to lose and which new treatments I can afford to keep! 

It's enough to make me go mad! 

But I will persevere and accomplish what seems to be out of my reach; impossible. I'm trying as hard as I can and I know you are, too. Running backwards? It's an apt sub-title to my book. It's one of the hardest things to do every single day. But I'm not quitting. Nope. It's just not an option. 

Flare thee well

It's over. For now. The Lupus flare that had me in its grips for the past two weeks or so seems to have abated. What worked? I don't know.

It's been a couple of months that I've started implementing an integrative and functional medicine regimen including a complete change of diet and the addition of many supplements - slowly. Yet, I still had to turn to corticosteroids to pull me out of the depths of the flare; lessen the intense pain and fatigue and clear the fog from my brain. A failure? I don't think so. It's a combined process.

According to The Mayo Clinic, corticosteroids "mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body's usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions..."

"Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues."

There's no question that corticosteroids used for Lupus and fibromyalgia and the treatment of certain cancers and other illnesses works but they are also UNhealthy for a variety of reasons, including increased risk of osteoporosis, glaucoma, high blood pressure and Cushing's Syndrome if taken for a long period of time and in high doses by mouth and/or intravenously.

I hate them. So does my integrative/functional medical doctor Dalal Akoury, M.D. and she was distressed that it was my chosen course of action but I needed relief - fast - and I knew it would work. I simply haven't been under her care long enough to allow all her prescribed recommendations to work. And because I am in New York and she is in South Carolina, I must see her only on my visits there. I go next week.

But, I'm trying. I'm really trying. And I am seeing improvements. The flare was obviously caused by over-exertion and stress due to moving residences and the launch of my book. Now that I'm out of it, I'm continuing to add in Dr. Akoury's supplements one by one, ensuring that I have no reaction to the first before I start the second, third, fourth or fifth. I can't wait to see her again and discuss my progress.

Immune system disorders. My goodness, there are thousands of them that put our bodies in battle with ourselves. Stay tuned for more health updates! I know they are fascinating (tongue planted firmly in cheek).

WHY WAIT?

Dorothy Ellis, 92, a hospice patient in Kansas asked to soar above the fields of her hometown in Kansas as her last wish. (Yes, Dorothy. Yes, Kansas.) Here is the video link: Soaring over Kansas
Flying to Somewhere Over the Rainbow by Israel "IZ" Kamakawiwo'ole, Dorothy smiles, waves and gives her family a thumbs up. Six weeks later, she died.

Why do we wait until we're 92? 

Since I was pronounced dead in a local emergency room 15 years ago due to a missed diagnosis of Stage 4B cancer and Lupus I've tried to live each day fully; as if it is the last. I've got my "bucket list" but things get in the way, don't they? Things simply get in the way and we make excuses.

Hey, I'm scared to get up in a parachute contraption like Dorothy did! But there are many other things on my list that I could do now - like seeing Mount Rushmore and the Grand Canyon. And in the ensuing years since my devastating illness and the dastardly side effects of chemotherapy, I have crossed a lot of things off my list - like purchasing a home down south and writing my book - plus simply being here to raise my sons and see them become productive, kind and wise young adults.

But we've got to do more; get off our duffs and experience life every day. I'm heading into the last third of my life and I still have so much to do! This is why I've chosen to explore integrative/functional medicine options to help with the various ailments I suffer. According to The Institute for Functional Medicine:

"Integrative medicine is healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle. It emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative."

I'm in the second month of this trial and find surprising and good changes in my body. I'm still in control - picking and choosing what new and different treatments I will try and reviewing all with my trusted and 'traditional' medical specialists who have known me for so many years of this sh*t. Sharing all the new information with one of them prompted him to call me "meshugganah." (Crazy in Yiddish.) That's okay. I'm a bit of a risk taker.

So what new thing will you do today? Will you let me know? 

Picture by my son, Brett Santagata

Holy Smokes!

I'm a little pissed off. It is no longer possible for me to deny that the rich and/or celebrated get better medical care because they can afford preventive medicine.

My new integrative/functional medicine doctor ordered dozens of blood tests that show I am out of range in critical areas. For example, with no known heart disease in my family (other than when my parents were nearing their demise) I am at immediate risk for stroke or heart disease unless I do something about it. I am 52, albeit with the physical body of a 62-year-old due to the massive amounts of chemotherapy I received during my lymphoma treatment and the subsequent radioactive tests that I have been undergoing for the past 15 years.

I also learned from my lab results that:

• I am pre-diabetic. My body is not processing insulin properly. No one in my family has diabetes.
• My kidney function is extremely low.
• I have zero vitamin D even though I've been taking supplements for years.
• I have zero estrogen and progesterone - again after taking medication for at least a dozen years.
• Gastro-intestinally, I'm a mess. 
• I'm dangerously dehydrated even though I drink the requisite amount of proper fluids each day. 
• My body is in acute stress due to the above and is working way too hard to maintain itself.

I guess I could have told you that because of the way I've been feeling; but to see it laid out on a three-page lab results form with the highlighted out-of-range areas is quite scary and makes me angry. 

Traditional medicine will wait for the stroke and then treat you. They will wait for renal failure and then start dialysis. They will let diabetes overcome before starting any kind of treatment that could prevent it from happening. Our physicians are taught to treat the event or the symptom, not to prevent any of it years before it might happen. 

I asked Dr. Dalal Akoury to rate me on a scale of one to ten with ten being the worst. She gave me a seven. However, she also gave me great hope. She's created a Road Map or treatment and recovery that will address all of these areas and more. She will help me live a longer and more satisfying life and wean me off of many prescribed medications that have been doing harm to my vital organs and are, simply, no longer working. 

I can't tell you exactly what she's going to do yet because while she rattled off (from her genius mind) all my treatment options, my mind was wandering. I was thinking how sad it is that everyone can't get these tests done (they cost up to $2,000) or work with a preventive medical doctor. I have elected to do this and rationalized (rightly, so) that if I can get off of just two or three chemical medications, I will save up to $400 a month in co-pays. 

So what makes sense in this restless and, perhaps, reckless Obama-care state of mind? The pharmaceutical companies will continue to make tons of money. Doctors will do even less preventive medicine - if they did it at all - and treat, treat, treat. I guess it costs more to keep us alive then to have us die. I also plan to meet with my excellent and progressive-thinking cardiologist and review the blood test results with him. I want to know if he would do this same type of extensive testing if insurance companies paid for it or patients could afford it. I want to know his opinion. 

As I've written before, I'm baring the good, bad and ugly of this new medical journey of mine. As a 'professional patient,' my modus operandi is to take the lead, even when I'm too damn tired to do so. I'm placing my very life in the cradle of a new type of medicine that is really 'old school.' Identify and fix  early using the very best natural foods and plant-based medicines that are available to us. Apparently one of my intravenous treatments with Dr. Dolly (as she is affectionately known) will contain Niacin to help my digestive system, skin, and nerves to function. It is also important for converting food to energy. 

As Dr. Dolly says, health is the new wealth. It is up to us to take charge of our own healthcare in whatever fashion we choose. But, make no mistake, it is up to you and you alone.

I'll let you know how it goes. 

In the meantime, I hope you'll check out my new website at www.dyingtoliveamy.com. The book WILL be available soon - I promise. I just had to make sure it was perfect! 

Doc Dolly

Well, I've done it.

I've completed my intake as a new patient of integrative/functional medicine at AwareMed Health & Wellness Resource Center and I have my assignments. First I want to share the intake experience that was quite extraordinary.

After completing a bunch of paperwork and attaching my health history and lists of doctors and medications, I was taken to a treatment room by a very capable R.N. It had all the necessary medical equipment yet was also very inviting. It was not 'sterile' in appearance but certainly clean and crisp. She took my temperature, pulse, and blood oxygen levels as well as my blood pressure. I stepped on a very accurate 'old school' weight scale and she noted all in my chart.

Then Dr. Dolly appeared and guided me towards a very comfortable sofa in a serene and stress-free room. No details were spared with the decor to create a calm, inviting space including soft music, lighting, and comfortable pillows. She made sure I was comfortable and sat down next to me. We faced each other. Within five minutes, tears were rolling down my cheeks.

Dr. Dolly has an incredible intuitive 'sense' and, after closing her eyes for a few moments and holding my hands, she asked me a question that drove straight into my core. "What happened to you in the three to five years preceding your cancer and Lupus diagnosis? Something that hurt you very much. Something to do with loss or abandonment." I felt like those Batman cartoon balloons were floating over my head, WHAM. SPLAT. BOOM. And then we talked. Or, I talked and - together - we uncovered the events that I don't tell anyone; experiences that are not even in my book in their totality. Trauma that leads to dis-ease.

After talking for about an hour (and about a half dozen tissues later), Dr. Dolly left the room and returned with her computer. She entered what she had learned about me into a very sophisticated software application she created and my health care plan was hatched. First, an elimination diet for 10 days tailored specifically for me, especially due to the gastroparesis. Second, some lab studies and then treatments that may include certain intravenous drips. There may be supplements in liquid or crushed powder form since I can not swallow well. I'm still making sense of it all. I have about 10 pages detailing Amy's Wellness Mission. Perhaps it is the final medical blueprint for the last third of my life. I sure hope so.

Dr. Dolly's mission is "to ignite the spark of health deep within everyone, and to allow this sparkle of wellness to shine through everyone’s eyes, becoming one with the universe, and aligning body, mind, and spirit,” I am willing to believe; to try to get away from toxic pharmaceuticals as much as possible and take a new journey. I'm so glad she is a certified medical doctor as well as a practicing emergency room physician and oncologist. I feel safe combining the old with the new ... that, in her case, is really just going back to the old. It is traditional yet modern healing and she is a consummate healer.

Or, we shall see. You are on this journey with me - the good, the bad, and the ugly. So hang on because it's going to be quite a ride.

My first steps. TMI? 

Bookish

Yes, I've been accused of being bookish, studious, and a nerd. In fifth grade I remember a friend saying: "The reason nobody likes you, Amy, is because you read books."  We were eleven.

And even though I knew not to take her seriously, I wasn't yet confident enough to toss the remark away.  I read in secret, always immersed in the library books I borrowed each week. I have to thank my father for introducing me to this world of wonder. We visited the Mamaroneck, New York public library every weekend and while he perused the upstairs shelves of adult fiction, I was allowed to stay in the children's room and find my own treasures of words and pictures and, later as I grew, just words.

I would read anything I could get my hands on, including an incomplete set of second-hand encyclopedias we owned There was so much information! Imagine my delight with the birth of the internet and its vast, never-ending supply of words - words that are massaged and manipulated into thoughts and stories and opinions and reports.

Today, my dream of writing a book of my own has been realized. Although not published yet, it will be available very soon. It's not the kind of book I thought I would ever write based on the dozens of story ideas I've kept over the years in notebooks and on scraps of paper and in my head. It's a story I had to tell - about my dance with death and its aftermath. Writing Dying to Live: Running backwards through cancer, Lupus and Chronic Illness was therapy; four hard years of self-realization and healing. I am so glad it's over.

But it's done and I have a choice. I can grasp onto my fiction book ideas and delve into characters that are not real but reveal themselves through my imagination or I can continue writing non-fiction based on my upcoming foray into integrative/functional medicine. I can even stop and not write at all. I think, for me, that would be like not breathing.

As author Ray Bradbury said to a group of students who wanted to become writers:

"You must write every single day of your life... You must lurk in libraries and climb the stacks like ladders to sniff books like perfumes and wear books like hats upon your crazy heads... may you be in love every day for the next 20,000 days. And out of that love, remake a world."

My friend was right. I am a nerd.