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).

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! 

Shop for What?

Okay. I did it. I made my first foray into the world of all-out organic food shopping. I spent $69 yesterday on new foods.

For my first step in my integrative/functional medicine journey - the elimination diet - I have 10 days to eat or drink foods that are mostly foreign to me. Some, like roasted veggies and fresh fruit are not new but the following have me trying really hard:

• A new protein drink rather than Boost. It has no sugar or carbs or FLAVOR. Blah. Dr. Akoury is helping me find an alternate.
• Almond butter. First of all, I never liked peanut butter and I'm not particularly fond of almonds either. I have yet to try this gooey paste. 
• Stevia is a natural sweetener that I bought in packets. Since I'm off all sugars, this was a nice addition to my tea tonight.
• Rice milk. Haven't taken the plunge yet. Scared. 
• Puffed rice. Haven't tried it yet and - no - Rice Krispies don't cut it. Too many additives. Seems like it will taste like paper but if I put enough bananas and strawberries in it and add the rice milk???
• Tapioca bread because it's gluten free. I find it surprisingly light and toasts fine with Lox instead of my usual bagel. 
• Sea salt. Since I don't salt my food, I figure I can use this as a seasoning, as needed.
• Melon, strawberries, sweet potatoes, Portabello mushrooms, zucchini and squash. Love them all and always ate them. 
• Squash soup. Always liked it, especially with chicken and greens thrown in. I couldn't find the kale though. 
• Rice pasta. I am very afraid. 
• An organic vinaigrette. I put some on top of the roasted veggies. Yum. 

My diet can't include raw veggies or nuts or beans that would all be allowed for a 'mornal' person but not for me with gastroparesis. And I can't have dried fruits or anything that is difficult to digest. 

I found all these things at the regular supermarket. Tomorrow I am going to the organic market and do some more exploring for tasty things and purchase organic chicken or turkey. Yeah, I'm that whacko in the aisles with my reading glasses peering at labels like they are the next John Grisham novel.

Even just one day into this, I am CRAVING CARBS!!! Where are my cookies and cake? And I am missing my dairy - eggs, yogurt, ice cream. 

But I'm keeping busy with work. Took a long walk by the Hudson River with a new MeetUp group for people who work at home and want to get out for a break during the day. And - finally - my book and website are coming together. I'm still shooting for the end of April for publication. It's very exciting. 

Food, glorious food! It's a whole new world that I am finally ready to explore for health benefits that I expect to be life-long. 

Food, glorious food. From Oliver, the musical. 1968

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? 

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!

Depression

Here it is: The dirty little secret. I suffer from bouts of depression. As described by the National Institute of Mental Health, I am most likely experiencing a minor depression right now; a lackluster feeling of not wanting to do anything or see anyone and an overwhelming sadness that could last up to two weeks. I've been here before and, trust me, I'm not good company.

My work halts. My mood is low. My appetite is poor and my health issues are exacerbated. I actually had an episode of sweating through my pajamas one night this week and fear struck deep. The only other time that happened was when I had Hodgkin's Lymphoma and that was more than 15 years ago. It is a symptom and it also brings back hints of my PTSD from the emergency tracheotomy and its aftermath.

I think, too, I am wary of my 'ologists' month. By January 31st, I will have seen my rheumatologist, my oncologist, and my gastroenterologist and, undoubtedly, will be run through the gamut of testing I hate and the never ending adjustment of medications. Shortly thereafter, I will get my osteoporosis injection (the latest and greatest, or so they say) and continue my blah diet regimen. I have some new concerns and some old concerns. The docs and I will undoubtedly discuss them all.

Oy.

I don't like dealing with my health problems. I like putting them on a shelf and rolling along. But this past week alone, I've spent hours up late at night wondering whether or not to go to the hospital because my stomach is in spasms and pain from the gastroparesis I have lived with for some two years now, the strange night sweat and headaches and overall malaise. It is not pleasant when I have to go to the ER when the pain is at a +12 on a scale of 1 to 10. But that's what I wait for - the +12. I've learned.

For those of us classified as 'sick' or disabled, we don't know which comes first - the physical maladies or the depression; but both always come and there is no schedule. I know that, too.

According to the NIMH:

"People who have depression along with another medical illness tend to have more severe symptoms of both depression and the medical illness, more difficulty adapting to their medical condition, and more medical costs than those who do not have co-existing depression. Treating the depression can also help improve the outcome of treating the co-occurring illness."

I don't think many 'ologists' get this; nor the many specialists we must see individual for each piece of our bodies. There are so few holistic practitioners. Thanks to friend and colleague Susan Murphy Milano, and her courageous fight against Stage IV cancer last year, I've become acquainted with Dr. Dalal Akoury and her AwareMed Center in South Carolina. God, I miss your wisdom, Susan, and I'm definitely going to set up an appointment to meet Dr. Akoury when I'm down south in February. I know Dr. Akoury gets it and, perhaps, (just, perhaps) I might finally have a captain of my ship to guide me. Many have promised, none have succeeded. But it's worth a shot 'cause I ain't givin' up yet.

Lone Mallard