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! 

Feeling Groovy

It's been over two weeks that I've been eating a diet prescribed by Dalal Akoury, M.D. to eliminate toxins in my body and begin (finally) to take control of my health through a proper diet.

It's a lot of damn work!

My goal is to - simply - feel better and try to stop using some of the many pharmaceutical drugs I have come to rely on as a chronically ill person. And to put a halt to future degradation of my physical well-being. Can I do it?

I still don't know.

First of all, some of the foods are tasteless and I have to find novel ways to spice them up - literally. Secondly, it is pricey to buy all natural, organic, free-range foods. So much of what used to exist naturally in our fruits, vegetables, chickens and cows has been altered up to 4000 per cent since the 1970's, leaving many nutrients behind, explains Dr. Akoury and the research studies I have been reading.

Lastly, I have to cook. I hate cooking. I used to love to bake and I will return to that now that I have healthful recipes to try. We really need to all go back to the prairie yet I just read in my local newspaper today that a family is being fined for keeping goats and chickens on their property. Zoning doesn't allow it and we all know those laws grew out of great hygiene concerns of the last century or so.

But I'm feeling good and that has to count for something! Yeah, I'm still cheating now and then but food is love for the soul - or is it the other way around? Don't care. Gonna keep trucking and trying.

* * *

In other news, I must speak about our own paradigms for suffering or tragedy. When we are in crisis, we are told to look towards someone who has it worse to put things in perspective. It's good advice and it may help for the moment but your individual crisis is - well - individual and personal to you. Pain, whether in body or spirit, is real. Anguish is real. Distress, in whatever form, affects us no matter how many others have trouble in their own lives. But recognizing and empathizing with others' troubles are what make us human and connected.

Today is my niece's birthday. She is nearly my age having been born to a sister who is 18 years older than me. I wished her a Happy Birthday even though she is in the throes of one of the biggest challenges of her life. Knowing her, she will tackle what seems to be insurmountable right now with grace and acceptance - in due time. I ache for her and her family; yet I also know she will still be the first one to help someone else in need even during this time of sheer agony for her.

This blog, then, is written in honor of my amazing, wonderful, compassionate, brilliant niece. May the food on her table be bountiful and prepared with love, the prayers sent her family's way count as high as the stars, and the tremendous difficulty of her family's healing journey begin today.

I love you, Leslie. 

"Free" Food

Wheat free, gluten free, dairy free, cholesterol free, carbohydrates free, sugar free, peanut free, soy free, corn free, citrus free, additives free and I'm not even hung-ree!

Even though it hasn't been easy, I've stuck to this elimination diet prescribed by integrative/functional medicine physician Dalal Akoury, M.D. for seven days now as best I can. Yeah, I've cheated a bit but it's really, really hard not to indulge a craving, as you all know. Best of all, I've added a new natural sugar, quinoa, flax seed and sea salt, and a number of other foods and products I never would have tried.

I've learned a lot about genetically modified foods (bad) and organic and free-range meats (good) and find I'm eating a lot of rice  - white rice, rice milk, rice waffles, rice mozzarella cheese and even rice cakes. Yes, Delilah Jones of Imagine Publicity, I have found a brand of rice cakes that don't taste like paper towels!

I've also learned that purported healthy food is not necessarily good for you - even those found in a 'healthy' supermarket, grocery or supplements store. It's the food additives that are most hard to avoid. In Dr. Akoury's upcoming book, "Please Don't Eat the Donuts," she lists these additives and their consequences. YUK. I never want to eat 'un-healthy' again.

And I think that's the whole point of "Dr. Dolly's" elimination diet. Even though I am doing a 'toxic cleansing' for 10 days, I am also introducing myself to a wide variety of foods armed with educational materials (that I carry to the stores with me) to make the right choices. In my 16 years as a professional patient I can honestly say I have never had someone in the medical profession present this information to me in such a clear, concise and loving way. I am so glad I went ahead with my first intake appointment at AwareMed Health & Resource Center and didn't get scared.

I'm not going to launch into a lengthy discussion or reference any health food sources here because MY diet is tailored to MY specific needs. And I think that is key. Although Dr. Dolly will extol the virtues of the new food pyramid that puts fruits and veggies on the largest bottom tier rather than meats, there are so many other things to learn about what we put in our guts.

I will leave you with one final story: Years ago, post-chemotherapy treatment, I went to the Omega Institute in Rhinebeck, New York for an Introductory Weekend. I went alone and roomed with a stranger - a first for me. And I went with wobbly legs, chemo brain, and an overall weakened immune system. But I needed to explore restorative health practices including foods, yoga, humor, etc. It was a life-changing experience and I was so proud to have done it all by myself.

One day, we did a session on food and it was obviously geared more towards those who have trouble with being overweight. However, the exercise (which I thought was quite foolish as we began) invited us to chew one raisin for at least 60 seconds; that is, not gulp them down in handfuls like we usually do. We experienced the sweetness, the tartness, the texture and learned how to appreciate a single item of food.

As we went around the circle describing what we'd learned from the exercise, surprisingly, I burst into tears! I realized then that I had been mortally afraid of food. You see, when you are diagnosed with cancer or Lupus or any other life-threatening illness, you are immediately bombarded with messages, information, and books about what kind of diet to eat to prevent or cure cancer. I tried some of Dr. Andrew Weil's stuff (even writing to him in desperation only to get a form letter in return) and a macrobiotic diet (miso soup for breakfast - UGH) and went to a naturo-pathic doctor leaving his office with hundreds of dollars of supplements that I couldn't swallow because my throat was so mangled from the emergency tracheotomy.

So a food imprint was born and I strove to get back to my fairly healthy diet where I ate everything in moderation. That worked until I was struck with gastroparesis a little over two years ago. Since it's time for a food revolution in my body, I am so glad to have a skilled healer to guide me correctly.

So, perhaps, you might start your own new food journey. You can start with one small raisin.

NOTE: I have been told that many of you are having trouble posting on my blog site. Please send me emails at ascrohn@gmail.com and I will be sure to post any comments you'd like. Thank you to those of you who have contacted me in one way or another and, once my website is complete, you will have another avenue to reach out to me. I love reading your comments! 

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? 

Asteroids and Meteors

We're all familiar with the saying that Saturday Night Live's Julia Sweeney made famous in her skit, memoir and one-woman show: "When you make plans, God says ha!"  I've had some interesting experiences in these past two weeks that have, once again, cemented my belief that things happen for a reason when the time is right. Shake, rattle and roll... Just maybe that asteroid or meteor was meant for me.

First, for fun, I had my Tarot cards read by Jennifer Johnson (a lovely lady both inside and out) at a Mardi Gras party on Fat Tuesday. It was a 'mini-reading' but with five cards laid down and the meanings given to me for each, I was somewhat taken aback. They were spot on. But Jennifer, who is quite the professional I must say, explained that she was just telling me what each of my drawn-from-the-deck cards represented. She never spoke of me personally because she didn't pretend to know me or my situations. It was my job to absorb the information and see if it was relevant. It was and it threw me off course a bit.

My professional photographer friend took my "book cover" photo and I am pleased with the results. Now I am no longer a woman with sunglasses holding her dog, but a writer sitting at her computer. The pose was painful, I'll admit; but, damn, Sherry Vance knows what she is doing. Click on her link and take a look at some of her amazing photos. The prices on that site are stupidly high so if you're interested in any of them at a reasonable price, let me know at ascrohn@gmail.com.

Then I was given a wonderful blessing by being able to spend several hours with two ladies who will now play a very important role in my life - Delilah Jones of Imagine Publicity and Dr. Dalal Akoury, founder of the AWAREMed Health and Resource Center who is a pioneer in the field of integrative medicine. Delilah rearranged my puzzle pieces deftly. She answered my questions about social media marketing and suggested that I start an internet radio show so I can share all that I've learned about health and wellness with others and referred me to my pal Denny Griffin, true crime author, private investigator and radio host of CrimeWire where he regularly interviews former mobsters, I will launch my own Blog Talk radio show called "I Told You I Was Sick" on his InsideLenz network in upcoming months. With Dr. Akoury, I am going to take a huge step forward in caring for myself and my numerous chronic ailments by starting and blogging about my personal journey through integrative medicine. After nearly 16 years as a 'professional patient' of traditional medicine, I am going to try something new during the last third of my life and bring you all along for the ride. As Doctor Akoury says: "Health is the new wealth" and I've just got to give it a try.

My memoir and book proposal are done. It's being pitched to agents. I'm almost finished with my website. I've signed up with all the social media network sites - Facebook, Google+, Twitter, Pinterest, Linkedin, etc. and I ask you to please share the links with others. And I'm not sitting still while my editor pitches my book. I am going back to Amazon.com's CreateSpace to self publish which is truly the modern way to attract readers and the eye of more traditional publishers.

Finally, I have also started filling out the paperwork to become a Court Appointed Special Advocate (CASA) for children in the foster care system; something I've wanted to volunteer to do for many years. If the social services system currently in place was in place when I was a child, I would have surely been removed from my home. As a foster and adoptive mother now, I can't wait to help other children who may be floundering and need another voice in the courts. I know many of the States' children and family services programs are a muddle right now, but I'm ready to dive in and help affect change in whatever small or large ways I can.

So for just two weeks in South Carolina where I can think and work and spend time in solitude, I've been guided to map out a new plan and I doubt it is mere coincidence that all of these things are coming together now. It is the proper time and I am being guided by a force greater than myself.

Most of all, I promise to be faithful to you, my readers, and deliver information that is important and relevant to good health and living a life that is always kind and wise. I am blessed to have you travel alongside me.

Watch out for asteroids! You never know when they are going to shake up your life.

Amy at five-years-old.

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

Writer's Blockhead

It's happened. A first for me, yet as I sit here trying to get back to work on my books and proposal, I feel like I'm stepping off a cliff.

I know that I will become immersed and completely unavailable to anyone or anything that wants or needs my attention. I know I will cry and laugh and be, once again, fascinated by medical research that supports the theory that childhood maltreatment contributes to adult physical illness such as the ACE Study.

I know I will become more aware of how important it is to stay on a path of holistic health while integrating traditional medicine as well as alternatives. I am blessed to learn of Dr. Dalal Akoury at AwareMed who breathes knowledge on this topic.

So my blockhead is cement; not unlike the other-worldly image of a statue that I have envisioned since I was a teenager that was my barometer of me. First thing in the morning, I would do a mental check of my statue and some days it would be teetering back and forth, other days a limb would be broken and laying on the ground and on another it might be in many pieces. Each daily image would signal to me how I should take care of myself that day - both mentally and physically.

Today, my statue is rock solid and impenetrable and even a bit obstinate (it's eyes are closed and it's arms are folded across its chest). So I'm taking it as a sign that now is not a good time to delve back into a memoir that is painful to edit, especially on the heels of the recent passing of my friend and colleague, Susan Murphy Milano to whom nothing was ever daunting enough to stop her except that damn cancer. I feel that my words may be colored by my anger and grief that she is really gone.

Besides, I convince myself, there is house cleaning and holiday decorations to pull out of storage and bring to cheerful life. I finished my holiday shopping completely via the internet. Gotta love that Cyber Monday!

But, to be honest, I am hurting today. My ailments - particularly Fibromyalgia are in full throttle. I tried to scrub the tub but it hurt. I walked the dog and it hurt. I am carrying laundry up and down the stairs but it hurts. I re-injured my back in a car incident on Thanksgiving day and it hurts. Tomorrow I'll get back into the physical therapy pool because I've got to keep moving through the pain and, perhaps, the next day will be writing/editing day.

This blockhead's deadlines loom but only by my own making. Now that I have a respectable amount of followers of this blog (mostly those signed up by email) and am learning the ins and outs of making it better (particularly for the European readers I seem to have according to my stats. Howdy mates!), I will get moving and writing and editing. It's the best medicine there is.

Autumn in Murrells Inlet South Carolina.