Monday, December 17, 2012
Pretty long video, but WELL WORTH IT.
http://www.youtube.com/watch?v=rixyrCNVVGA
As those of us who have endured Lyme Disease, or still continue to endure it, know, everything we eat and put in our body affects how we feel. It is sad to me that most of the nation doesn't understand the importance of the environment, food, and how much it affects our health.
What is in this video is NOT new to most of us: eating safe, non-genetically modified organic food free from antibiotics and hormones is essential to feeling well. But, Robyn O'Brien does an amazing job illustrating the story, the facts behind all of this, how the food industry perpetuates this cycle of ilness-causing foods, and why good clean food is still inaccessible to most people (cost). Some interesting stats from her talk: Americans spend more on health care than any other country, and have more cancer than any other country. 1 in 10 breast cancers is genetic; the other 9 are due to environment (according to Robyn).
I struggled with convincing my parents to buy me only organic food, and the grocery bills were so high for the 6 years that I was sick. They thought it was all BS. My bills grocery continue to be high because I refuse to put anything else in my body even though it's not in my 'budget.' But being disabled, in bed, and sick again is also not in my 'budget.' I need to keep myself healthy.
I hope we can change the policies of this country so that the food industry stops inherently contributing to illness. I don't think 'regular/healthy' people realize how important this is; I have many friends who have the means to eat organic/pesticide-free but do not. I suspect this is because the message hasn't alarmed people enough. The message needs to be loud and clear HOW dangerous chemicals, pesticides, and other agents in our food are.
I hope we can drive this point home to many so we can prevent more illness in this country.
Even the American Pediatrics Association (hardly characterized as holistic or radical) reported that the evidence is “robust” for associations between pesticide exposure and cancer (specifically brain tumors and leukemia) and “adverse” neurodevelopment, including lowered I.Q., autism, and attention disorders and hyperactivity in children. The article is here. The APA linking pesticides to these health concerns is VERY alarming in my view.
My dear friend Johonna has been creating a blog of ways to keep ourselves healthy, in home, food, everything we do - I learned about both of the above pieces from her.
http://www.littlegreenmoments.com/
I feel it is our duty to educate others about what we have learned. So please share this information with those you love, and let's try try to get consumer demand for clean foods high enough so that EVERYONE can afford it.
Tuesday, December 4, 2012
This month, I was honored and humbled to be featured in San Francisco Magazine's December issue. I was in a section where they profiled Women Social Entrepreneurs and in Philanthropy. The reason they chose me was because I am a co-founder and Board Member of a nonprofit, called Spark (www.sparksf.org). I co-founded this nonprofit with some other women when I was in law school about 7 years ago.
I post this here along with the theme of the last post, to show Lyme patients out there that ANYTHING is possible. I never thought I would be able to walk 10 minutes again, to get through the day without napping again, to be able to use my brain again, and I certainly thought I would never work again. Not only am I working, but I am doing well, thriving, and continuing upwards. After years of feeling near-death was imminent (or at least hoping it was because the suffering of this disease was intolerable). I am here to tell you that ANYTHING is possible. I couldn't even imagine working 7 months ago. I am still paying off that medical debt, but I feel blessed to feel independent, healthy, and happy. I would say I am between 85-90%, and still going for the 150%.
Never EVER EVER give up....Below are the photos from the article..I am at the very bottom picture. The link to the online article is at: http://www.modernluxury.com/san-francisco/story/the-philanthropists?page=3.
As I promised, I would detail every piece of my protocol to share what helped me and hope that you can also use some of it to guide you in your treatment process..I'll be posting snippets of info soon, on detox, hormones, etc. Stay tuned!
I post this here along with the theme of the last post, to show Lyme patients out there that ANYTHING is possible. I never thought I would be able to walk 10 minutes again, to get through the day without napping again, to be able to use my brain again, and I certainly thought I would never work again. Not only am I working, but I am doing well, thriving, and continuing upwards. After years of feeling near-death was imminent (or at least hoping it was because the suffering of this disease was intolerable). I am here to tell you that ANYTHING is possible. I couldn't even imagine working 7 months ago. I am still paying off that medical debt, but I feel blessed to feel independent, healthy, and happy. I would say I am between 85-90%, and still going for the 150%.
Never EVER EVER give up....Below are the photos from the article..I am at the very bottom picture. The link to the online article is at: http://www.modernluxury.com/san-francisco/story/the-philanthropists?page=3.
As I promised, I would detail every piece of my protocol to share what helped me and hope that you can also use some of it to guide you in your treatment process..I'll be posting snippets of info soon, on detox, hormones, etc. Stay tuned!
Thursday, November 22, 2012
A YEAR OF FIRSTS
Many months ago, I was compelled to write about my YEAR OF FIRSTS after an exhilarating realization that this year, after 6 years of complete and life-sucking disability from the sci-fi disease most of us know as Lyme Disease, I am not only Lyme-free but have had so many breakthroughs this year. So many firsts at so many things. Granted this list is not representative of things I am doing for the first time ever, but rather or the first time in 5 or more years since being taken hostage to this illness over 6 years ago. So, so it might as well be the first time I am experiencing them. It feels like the very first time!
I write this to share the progress of my journey but also to give you HOPE, as I know how valuable this is when sick.
I was at the airport a few months ago, slept 5 hours (5 hours too few for my needs). I was exhausted but exhilarated. This was the first time I have gone to the airport by myself, without a wheelchair to help me get through security because I would have been too exhausted to stand in the security line, and unable to pick up my bags to put them on the conveyor belt in the past.
It was also my first time without my portable oxygen concentrator to help me breathe on the flight. Again, first time since I became sick with Lyme, not the first time ever. But it still feels so amazing to take these giant leaps that can only be seen by others as baby steps. I know you know what I am talking about. I had this same feeling when I was able to walk up my parents’ driveway (literally 10 yards) at the age of 33 (2 years ago only) when it had before been an unimaginable feat.
Back to the airport: I checked my bag in, rolled my small carry on and carried my purse to the security check out, feeling….EMPTY. Usually I had an entourage of bags – about 4 to be exact: a purse, a food bag, a medicine/supplement bag, a carry-on, and a huge portable oxygen concentrator, which looked like a small black cloth robot that hums and purrs when it is on. No oxygen today! First flight without it! No bags strapped to my every limb, things hanging off me and me a contorted mess trying to figure out where my phone was. Here I was with just a carry on and a purse, everything neatly tucked like a NORMAL person! I was walking through the terminal. As I walked by the passengers in wheelchairs, I remember what it was like to be a young person being pushed in a wheelchair, and how I felt everyone was staring at me (well a lot of them were staring, like what is wrong with you, you are so young?)
I was at the airport on my own and walking through it by myself! Never in a million years would I have thought this was a huge feat! Writing about this now seems silly, but it was my routine for almost 6 years...and we must always remember the steps that for us are the building blocks to complete and total health. If you are just experiencing some baby steps of improvement, please know that these truly are paving your path to the person you once were and will become again.
In reviewing this amazing year of firsts, I hope to remind all of you Lyme warriors and anyone else facing a health challenge or an uphill battle that there is ALWAYS a light at the end of the dark tunnel. I am not trying to brag (well a little, but I deserve it given the last 6 years)...so here is my year of firsts. This past year, I went to:
• my first concert (after 7 years!) – Foster the People at the Greek
• my first baseball game (after 8 years)
• my first camping trip (complete with tick-freakout)
• I danced for the first time (you know, fast enough to feel my heartbeat and enough to exhaust me afterwards even though it was only 30 minutes!)
I had:
• my first time biking (and biking up a huge hill and around Lake Washington for 40 minutes), and now I bike regularly
• my first time drinking caffeine (yes, chai tea lattes, wow caffeine is amazing. I never drank coffee but now I understand why everyone drinks caffeine, what a pick me up!)
• my first trip cross-country by plane without oxygen
• my first airplane trip without wheelchair assistance
• my first pro bono case as an attorney after many years of being sick
• my first time working again for the first time since Lyme knocked me out of life many years ago!
• my first time hiking at 9,000 feet in Tuolumne Meadows, first time fly-fishing (EVER) and catching my first trout up there (Thanks Andrew!)
• Other exciting firsts for my life not just this year, but in life, were being invited to speak at the United Nations Headquarters in March on women’s human rights at the 56th Commission on the Status of Women. I was later invited to speak at the State Department Active Citizen Summit on “Investing in Women and Girls.”
• first time EVER on a paddleboard, and first time on a surfboard in over 8 years! Ok I wasn’t really ready to surf yet, but my (now ex)boyfriend did most of the paddling and tugged me out there so I could sit in the waves and play with sea turtles and try unsuccessfully to catch some waves
• first time working out (that was 2 days ago) at a gym!!
• First time being in the press for something other than Lyme Disease (San Francisco magazine is profiling me for their December issue for my role as co-founder of Spark, www.sparksf.org, a nonprofit I co-founded while in law school 7 years ago). Should be on newsstands in the next week!
All I can say to those of you with Lyme Disease (or any other illness/health challenge) who are sitting in your bed, attached to an IV pole, with your picc line, or your 900 supplements and meds, brushing through tears and vertigo and memory loss and incomprehensible pain to even look at this screen, your time will come. There IS light at the end of the seemingly long tunnel. Don’t ever let someone say you cannot beat this disease. My first LLMD laughed at me when I told him I would climb Mt. Kilimanjaro. I cried the next few appointments when he told me it would basically be very difficult for me to be healthy Mona again, and a few appointments later, I switched LLMDs. You CAN and you WILL get where you want to be. Just believe. As Wayne Dyer says, when you believe it, you will see it.
I have many more posts to come, and apologize for lagging on updating my blog, life has been busy, in a good way! Please check out my new site - www.monamotwani.com - and www.monamotwani.com/#!ebooks/cl3g, where I plan to detail in depth my full treatment protocol that got my healthy over the past 6 years (similar to Perry Fields’ Lyme Warrior book) and many other helpful guides. I plan to keep updating this blog as well.
I found it next to impossible to find people who beat Lyme and went on to their normal lives when I was sick. I drudged through millions of online messages, contacts, but couldn't find anyone who had beat it. Could that be possible? It was maddening, disheartening, and depressing. I lost a friend to the disease, and found it unfair that the Lyme community didn't have a central depot like livestrong.com or other resources like the cancer community to help them stay positive and follow those who HAVE gotten better. I found the most inspiring posts those where someone told me how they were better...I hope you see that it is possible. I did a LOT of hard work, physically, emotionally, and spiritually. I went into massive debt and still have a lot of that debt. But there is no price we can put on health. I am lucky that I had parents to take out their retirement money to fund most of it, but that doesn't make any of this OK. More on that later or I will go on for hours...
"When you have come to the edge of all the light you have
And step into the darkness of the unknown
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!" ~Richard Bach
Be well,
Mona
Wednesday, May 23, 2012
Molly's Story
A great young woman I met via email, Molly Franken, who found out about my story on the California Lyme Disease online support group, posted an incredible synopsis of her story. She is from LA, and though we have never met, she has been in touch with me since I recovered from Lyme in January and before I slipped back into something that feels like a relapse. She has been emailing me and checking in on me constantly and I want to thank her for reminding me about the importance of sharing my story. Also, I want to thank her as she inspired me to get back to writing on my blog.
I want to share her eloquently written story. It shows how this disease strikes so many women who are young, driven, independent, and who suddenly because isolated and sick. Molly is in the business of making movies, and most recently, in the business of writing words. She is a strong woman who was taken out by Lyme but will be back at it one day. For now, Molly, I commend you on your strength, and your beautiful words that you have shared about your story. I think we will learn a lot from this experience and be able to help others with it....One day, Molly and I will be mt biking and drinking margaritas (when we meet in person, that is) and we'll show the photos of our Lyme-free selves to y'all!
http://www.theconversation.tv/wellness/my-journey-with-lyme-disease/
I want to share her eloquently written story. It shows how this disease strikes so many women who are young, driven, independent, and who suddenly because isolated and sick. Molly is in the business of making movies, and most recently, in the business of writing words. She is a strong woman who was taken out by Lyme but will be back at it one day. For now, Molly, I commend you on your strength, and your beautiful words that you have shared about your story. I think we will learn a lot from this experience and be able to help others with it....One day, Molly and I will be mt biking and drinking margaritas (when we meet in person, that is) and we'll show the photos of our Lyme-free selves to y'all!
http://www.theconversation.tv/wellness/my-journey-with-lyme-disease/
Tuesday, May 22, 2012
Remembering Possibility
Hi all,
Apologies for being out of touch for so long. I have been meaning to write about my new life as a Lyme-free Mona since January when I found out my tests were negative that month. Of course, we all know Lyme is a difficult battle, with not always reliable tests to tell us when the disease is gone. Though I felt better than I had in 6 years and had negative tests, I wasn't out of the woods. We all know Lyme is a disease unlike any other disease we've come across. It makes no sense, affects ALL systems of the body (including your mind), and is different for each patient.
Though I wanted to write excitedly about my amazing progress at the end of last year and beginning of 2012, I unfortunately have hit a dark patch again. Numerous factors contributing to this: a parasite cleanse, a kidney infection, overexertion, emotional stress, throwing out my back. But in reality we (my doctors/naturopaths/healers, you know that team that we all have that costs us every cent in our bank account but is the only thing keeping us going) think I may have a relapse of either Lyme or Bartonella. Toxicity is present for sure, and as soon as I come down from this rollercoaster ride, I plan to write a DETAILED post about everything I did to get over this disease. I also plan to write informational guides for Lyme patients, advocate for legislative changes for Lyme patients, but the universe isn't letting me get to that part as fast as I'd like. So I am trying to be patient. I had my big emotional breakdown a week or so ago, crying, panic attacks, wondering how it was possible after 6 years of being sick (but only 4 years of treatment), this disease still has a hold on me.
Well, I realized I think too much. I try to figure out HOW to get from point A (not well) to point B (150% healthy). I realize I have no idea how I got from Point B (healthy) to Point A (completely disabled). So as much as I want all the answers and someone to tell me what is happening every step of the way, Lyme doesn't provide that type of certainty.
But I do remember that no matter what, in wanting all the answers, sometimes I believe it's important for us to just remember the POSSIBILITIES of healing. What the mind believes, the body achieves. I truly believe the reason I healed myself (current setback excluded) was because of this belief. I had quotes (at least 50) plastered all OVER my bedroom for years. I repeated affirmations. I made vision boards. I visualized my body getting better. I still do. Keep believing. That belief transforms into REALITY. It may take months, years, decades, but this belief CAN bring you healing. Believe that you will be better. No matter what ANYone else (patient, doctor, person) tells you. Mind over matter has truth - I have lived it.
I was just at my LLND's office a month ago and he was telling me something I read in a book recently as we looked at my blood under a dark field microscope. If doctors were to take my blood (or anyone's for that matter) and put it under a microscope, and subsequently stress my body (even a mile away from the office where that sample of blood was sitting), the blood (that is now a mile away from my body and under a microscope in the doc's office) would RESPOND negatively to the stress, the SAME WAY the blood cells in my BODY respond! That is, the blood cells would still feel the stress even when OUTSIDE of my body. HOW IS THIS POSSIBLE?
There is clearly a connection from the body to cells that is above and beyond what science can explain. Some higher power, consciousness, energy, whatever you will call it, is present in the ability of our cells to know stress. Consequently, our cells must have the ability to know healing on this level. There are things that affect our body that science cannot explain!
Keep believing in yourself. I promise you can get there. I look forward to getting back to healthy so I can share with you what I did to get there. For now, back to dealing with toxicity and possible slight relapses with Lyme or Bart. All hope is not lost. It is the final cleanup, the storm before the calm.
Tell your heart that the fear of suffering is worse than suffering itself. And no heart has ever suffered when it goes in search of its dream.
-- Paulo Coelho
One of my favorite TED talks that I haven't seen in a while. I am sure many of you have seen it but it is a reminder that ANYTHING is possible and we CAN heal ourselves. It is WITHIN ourselves to heal. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html
Apologies for being out of touch for so long. I have been meaning to write about my new life as a Lyme-free Mona since January when I found out my tests were negative that month. Of course, we all know Lyme is a difficult battle, with not always reliable tests to tell us when the disease is gone. Though I felt better than I had in 6 years and had negative tests, I wasn't out of the woods. We all know Lyme is a disease unlike any other disease we've come across. It makes no sense, affects ALL systems of the body (including your mind), and is different for each patient.
Though I wanted to write excitedly about my amazing progress at the end of last year and beginning of 2012, I unfortunately have hit a dark patch again. Numerous factors contributing to this: a parasite cleanse, a kidney infection, overexertion, emotional stress, throwing out my back. But in reality we (my doctors/naturopaths/healers, you know that team that we all have that costs us every cent in our bank account but is the only thing keeping us going) think I may have a relapse of either Lyme or Bartonella. Toxicity is present for sure, and as soon as I come down from this rollercoaster ride, I plan to write a DETAILED post about everything I did to get over this disease. I also plan to write informational guides for Lyme patients, advocate for legislative changes for Lyme patients, but the universe isn't letting me get to that part as fast as I'd like. So I am trying to be patient. I had my big emotional breakdown a week or so ago, crying, panic attacks, wondering how it was possible after 6 years of being sick (but only 4 years of treatment), this disease still has a hold on me.
Well, I realized I think too much. I try to figure out HOW to get from point A (not well) to point B (150% healthy). I realize I have no idea how I got from Point B (healthy) to Point A (completely disabled). So as much as I want all the answers and someone to tell me what is happening every step of the way, Lyme doesn't provide that type of certainty.
But I do remember that no matter what, in wanting all the answers, sometimes I believe it's important for us to just remember the POSSIBILITIES of healing. What the mind believes, the body achieves. I truly believe the reason I healed myself (current setback excluded) was because of this belief. I had quotes (at least 50) plastered all OVER my bedroom for years. I repeated affirmations. I made vision boards. I visualized my body getting better. I still do. Keep believing. That belief transforms into REALITY. It may take months, years, decades, but this belief CAN bring you healing. Believe that you will be better. No matter what ANYone else (patient, doctor, person) tells you. Mind over matter has truth - I have lived it.
I was just at my LLND's office a month ago and he was telling me something I read in a book recently as we looked at my blood under a dark field microscope. If doctors were to take my blood (or anyone's for that matter) and put it under a microscope, and subsequently stress my body (even a mile away from the office where that sample of blood was sitting), the blood (that is now a mile away from my body and under a microscope in the doc's office) would RESPOND negatively to the stress, the SAME WAY the blood cells in my BODY respond! That is, the blood cells would still feel the stress even when OUTSIDE of my body. HOW IS THIS POSSIBLE?
There is clearly a connection from the body to cells that is above and beyond what science can explain. Some higher power, consciousness, energy, whatever you will call it, is present in the ability of our cells to know stress. Consequently, our cells must have the ability to know healing on this level. There are things that affect our body that science cannot explain!
Keep believing in yourself. I promise you can get there. I look forward to getting back to healthy so I can share with you what I did to get there. For now, back to dealing with toxicity and possible slight relapses with Lyme or Bart. All hope is not lost. It is the final cleanup, the storm before the calm.
Tell your heart that the fear of suffering is worse than suffering itself. And no heart has ever suffered when it goes in search of its dream.
-- Paulo Coelho
One of my favorite TED talks that I haven't seen in a while. I am sure many of you have seen it but it is a reminder that ANYTHING is possible and we CAN heal ourselves. It is WITHIN ourselves to heal. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html
Tuesday, April 17, 2012
Dr. Phil features Lyme on his Show!!
Last Friday, The Dr. Phil devoted an entire segment to chronic Lyme, using several minutes of footage from the disturbing but powerful documentary, UNDER OUR SKIN. In a behind-the-scenes chat with staffers after the show, Dr. Phil says a key issue was left out of the "Deadly Consequences" Lyme segment: "The political-financial-insurance aspect that impacts diagnosis." Could not agree more myself.
I don't watch Dr. Phil personally, but I think he did a GREAT job with this segment: http://www.youtube.com/watch?v=reqyYSAFb9I. One of his staffers has had Lyme for years and had her Hickman port (much like the picc line I had in my arm for 2 years to deliver IV antibiotics) in while working. I have no doubt watching her opened his eyes to the reality of this disease that some people, particularly IDSA (Infectious Disease Society of America) doctors, claim is MADE UP and all in patient's heads. I think Brooke Landau, a San Diego newscaster and former model who survived a 13-year battle with Lyme Disease, did an excellent job speaking up for Lyme patients. Her unbelievable triumph has been featured on the Today Show, Good Morning America, Discovery Channel, Extra, Fox 11 News, and news stations nationwide.
I believe some in the Lyme community were upset at the IDSA doctor that was featured on Dr. Phil, and though I too found that doctor's comments deplorable, I think the featured guests - patients and a Lyme-literate doctor - did a great job rebutting his comments.
The tide is turning, and more and more people, press, practitioners, and policymakers around the globe are becoming aware and educated. As the epidemic continues unabated and often unrecognized, I am happy to see Lyme advocates' commitment to persisting to create change and HOPE for hundreds of thousands if not millions of people suffering from this disease. Despite the relative lack of movement in this time by the official bodies of the IDSA and CDC, as patients are educated--one screening at a time, there's no turning back. The power of media coupled with the power of the people is working...
I remember sitting in my bed years ago, completely disabled, imagining what I could do and the community could do to get mobilized around this hidden epidemic...I feel we have made so much progress, but there is much more to be done...
I plan to write a book on my experience, more on that later...more on my experience and treatments in my blog later...I apologize to those of you waiting for the update on my treatments, but I have had a number of unforeseen circumstances (some health-related) come up the last 3 months that have prevented me from updating my blog...I promise it IS coming!
*Note, the documentary, Under Our Skin, is now on Hulu. Tell your friends and family they can watch it online!
Friday, April 6, 2012
INANNA HOUSE's FIRST FUNDRAISER
Reposting a Post from Mara Williams, Lyme literate NP at Gordon Medical Associates in Santa Rosa. I am on the Board of Inanna House, an incredible new nonprofit she started. More about Inanna House here.
http://puttinglymebehindyou.wordpress.com/2012/04/04/feedback-on-the-inanna-house-fundraiser/
I was not well and unable to attend the first fundraiser, but copied the Feedback on the Fundraiser post. I bolded much of Dr. Eric Gordon's (a brilliant LLMD) speech. It is incredibly helpful language to explain to others WHY chronic Lyme and TBDs (tick borne diseases) are not addressed by modern medicine and why the treatment is so complicated. Feel free to share.
Putting Lyme Behind You
Questions and Answers with California Lyme Doctors
Feedback on the Inanna House Fundraiser
Posted on April 4, 2012
Running Rabbit Ranch and Vineyard
The first Inanna House Fundraiser was an amazing success. We were so honored and proud to have had the opportunity to share our vision with so many supportive people. The day started off chilly, but as the guests started to arrive, and the room began to fill, the abundance of loving hearts and hopeful souls warmed the room.
Inanna House Founder Mara Williams, Dr. Eric Gordon, and author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit, Katina Makris were the featured speakers. Mara Williams spoke of her vision of Inanna House, and where it originated.” These patients are so marginalized and mistreated in the conventional medical system. We want to provide a supportive and safe place for those with chronic Lyme disease to receive treatment while integrating the best of all health modalities to achieve optimum results for each patient. “
Mara Williams, Eric Gordon, Katina Makris
Dr. Gordon spoke of Lyme disease and the need to look at each patient individually, and how Inanna House would allow for this. He shared some of the notes from his talk:
You are here so you know this is important.
If this project is to be realized, to be more than a dream, it is going to take a series of small and large miracles and some wonderful energetic connections.
When Mara first spoke to me about her vision for a place to care for people with TBD (tick borne disease), I knowingly smiled and rolled my eyes. I have heard many plans of and been involved in some attempts at delivering comprehensive care to people in the past, and had seen them all fail when the money or energy ran out.
Mara was ahead of me in planning, she knew she needed an endowment. I knew the sum needed was large and so wished her luck. I realized that instead of discouraging her, my words just helped her focus and she came back with the breathtaking sum of 25 million, and instead of giving up she went out to start making it happen. That is when I got interested in being involved.
In order to succeed we need to attract lots of donors and to do that people need to know why this is so important. And why many well meaning physicians will shut you down when you mention the need to help those with chronic Lyme.
I am going to give you a brief overview of what is special about the needs of these patients and why most doctors don’t get it. There are lots of ways our bodies can be ill. Why do those with chronic Lyme, or as I like to call it, chronic complex illness, need their own place? Why isn’t the standard hospital and rehab center good enough?
Hospitals have slowly begun to realize that people do better when there is some attention to the physical and emotional needs of patients and they do try to provide care above the utilitarian basics. There are some hospital-like settings in Europe and Mexico that offer something similar to what Inanna House is hoping to do. These still don’t come close to the inclusiveness that is part of Mara’s vision. They are fairly expensive and generally have a well defined approach to healing that will serve some, but will not help if you don’t fit their paradigm.
If this was just a dream to give better treatment to people with chronic TBD it would be important, but what should be understood is that without facilities such as Inanna House many people will not receive appropriate treatment.
They will suffer and some will die.
Wealth almost always gets you better care, but usually even those without resources get the basics in America. NOT SO WITH LYME. Even the wealthy get neglected when they have chronic Lyme disease. The failure of the medical system to comprehend chronic inflammatory illnesses that fall outside a few well defined diagnostic boxes is amazing. It is a product of our current medical and scientific educational system.
Factory medicine is designed for and is brilliantly effective in the acute stage of most illnesses. Think war injuries. That’s where big intervention medicine has its roots. Asclepius tended the Greeks at Troy before he was made a demigod – this is good stuff – it will save your life. The miracles of modern medicine are mostly based on battlefield medicine. Not many vaguely healthy people die of infections anymore- that used to be the main cause of death. Same with major injuries – get to the hospital and even if you are fairly mangled they can put you back together. Our hospitals were developed on the strict hierarchical structures of the army. The biggest change is that for awhile the doctors were the generals and now the accountants and statisticians are.
Where modern hospital medicine shines brightest is when people are in critical condition or suffering from acute illness or trauma, medicalese for “it just happened.” With an acute appendicitis the hospital and surgeon is a good bet, but they are useless for preventing the problem and not much help for recovering well.
With acute Lyme (acquired within the 6 weeks), it often responds quickly to oral antibiotics and probably herbs, as well. In many people their own unaided immune system will do the trick. But many people are not diagnosed with Lyme within 6 weeks of being bitten. The tick is not seen, symptoms don’t develop, or they are not specific enough to cause suspicion of Lyme disease. The disease is there, but no one notices it yet, or at least it is not identified. If the person’s immune system is not strong enough to keep the infection under control, or another stressor leads to the infection coming out of hiding, it is already well entrenched.
When we get past acute Lyme disease to Lyme disease that has been around for 6 months and more – we are now in the land of chronic Lyme.
Black and white.
Chronic Lyme is not the land of black and white diagnosis or treatment protocols. Tick borne diseases when they persist don’t fit the military model of health care at all. This is where patients fall through the cracks in the current health care system. Because the illness is not understood, patients are marginalized, stigmatized, mistreated, or left untreated at all.
Every patient is different – there are people who will respond beautifully to IV antibiotics and others who will crash and burn.
What is right for one is poison to the other.
This is one reason chronic Lyme is poorly understood.
Now is when Hygea – healthy living and health promoting environments are needed to balance the Aesclepian modern hospital. This is about balance- we need both acute intervention and supportive care- which is more important depends on the situation and the individual patient. With Inanna House, we are offering both.
Katina spoke about her personal journey with Lyme disease and how she found hope and healing using Homeopathy. After the lectures the floor was opened for questions, and there were plenty to go around.
Feedback from a Lyme patient who attended the event:
Oh, wow. It felt so good to be surrounded by such incredible human beings! The energy was so positive and supportive in the direction Inanna house is moving in with regard to treating Lyme Disease. The speaker panel was down to earth and spoke with such heart. Hearing Mara and Katina’s stories moved me to tears. They have such courage, and conviction. I know a lot of us have similar life experiences with having Lyme disease. It was held in the place where the wine tasting bar was. Beautiful knotty pine walls made it a cozy & inviting atmosphere for me. Thanks again for your part in helping me get there.
- Rayeanna
Inanna House is so thankful for all those that pulled together to throw an amazing event. The food and wine were delicious, the speakers were knowledgeable and entertaining, and the guests were fun and encouraging. Inanna House is proud to be part of the Lyme community.
Plans for the next fundraiser are already in full swing. If you would like to help out and get involved, go to www.InannaHouse.orgto contact us, we would love to hear from you!
Inanna HouseInanna House is the vision of Mara Williams NP. She sees it as an oasis of peace, health, and healing for those with chronic Lyme disease. Inanna House will be a residential facility for those who are debilitated by chronic disease, and in need of intensive therapy. The treatment would be designed to address all aspects of healing, including the physical, emotional, mental, spiritual, and energetic. Mara is the author of Nature’s Dirty Needle: What You Need to Know About Chronic Lyme Disease and How to Get the Help To Feel Better, the parent of a chronic Lyme patient, and a health care provider at Gordon Medical Associates.
Dr. Eric Gordon has established Gordon Medical Associates as an internationally recognized center for the treatment of patients left out by the conventional practice of medicine. “My deep respect for the individuality of my patients is the heart of my practice.” Dr. Gordon knows there is an interwoven complexity to these illnesses. There is a layering of the body’s adaptations to environmental toxins and infections from pathogens that is unique to every person, depending on their genetic susceptibility, organ vulnerability, toxic exposures, medical history and life circumstances. The body’s various biological systems – immune, endocrine, neurological, gastrointestinal and so on – influence each other and are influenced by each other, both in the development and progression of illness, and also its resolution.
Katina Makris is the author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit. At the peak of her career, Classical Homeopath and health care columnist Katina Makris was stricken with a mysterious “flu”. Only after five years of torment–two completely bedridden–and devastating blows to her professional and family life was Katina’s illness finally diagnosed as Lyme Disease. But diagnosis was only the beginning of her journey toward healing. Katina Makris’ vivid story offers practical information for diagnosing and treating the bacterial invasion, as well as powerful guidance for mending the broken spirit.
http://puttinglymebehindyou.wordpress.com/2012/04/04/feedback-on-the-inanna-house-fundraiser/
I was not well and unable to attend the first fundraiser, but copied the Feedback on the Fundraiser post. I bolded much of Dr. Eric Gordon's (a brilliant LLMD) speech. It is incredibly helpful language to explain to others WHY chronic Lyme and TBDs (tick borne diseases) are not addressed by modern medicine and why the treatment is so complicated. Feel free to share.
Putting Lyme Behind You
Questions and Answers with California Lyme Doctors
Feedback on the Inanna House Fundraiser
Posted on April 4, 2012
Running Rabbit Ranch and Vineyard
The first Inanna House Fundraiser was an amazing success. We were so honored and proud to have had the opportunity to share our vision with so many supportive people. The day started off chilly, but as the guests started to arrive, and the room began to fill, the abundance of loving hearts and hopeful souls warmed the room.
Inanna House Founder Mara Williams, Dr. Eric Gordon, and author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit, Katina Makris were the featured speakers. Mara Williams spoke of her vision of Inanna House, and where it originated.” These patients are so marginalized and mistreated in the conventional medical system. We want to provide a supportive and safe place for those with chronic Lyme disease to receive treatment while integrating the best of all health modalities to achieve optimum results for each patient. “
Mara Williams, Eric Gordon, Katina Makris
Dr. Gordon spoke of Lyme disease and the need to look at each patient individually, and how Inanna House would allow for this. He shared some of the notes from his talk:
You are here so you know this is important.
If this project is to be realized, to be more than a dream, it is going to take a series of small and large miracles and some wonderful energetic connections.
When Mara first spoke to me about her vision for a place to care for people with TBD (tick borne disease), I knowingly smiled and rolled my eyes. I have heard many plans of and been involved in some attempts at delivering comprehensive care to people in the past, and had seen them all fail when the money or energy ran out.
Mara was ahead of me in planning, she knew she needed an endowment. I knew the sum needed was large and so wished her luck. I realized that instead of discouraging her, my words just helped her focus and she came back with the breathtaking sum of 25 million, and instead of giving up she went out to start making it happen. That is when I got interested in being involved.
In order to succeed we need to attract lots of donors and to do that people need to know why this is so important. And why many well meaning physicians will shut you down when you mention the need to help those with chronic Lyme.
I am going to give you a brief overview of what is special about the needs of these patients and why most doctors don’t get it. There are lots of ways our bodies can be ill. Why do those with chronic Lyme, or as I like to call it, chronic complex illness, need their own place? Why isn’t the standard hospital and rehab center good enough?
Hospitals have slowly begun to realize that people do better when there is some attention to the physical and emotional needs of patients and they do try to provide care above the utilitarian basics. There are some hospital-like settings in Europe and Mexico that offer something similar to what Inanna House is hoping to do. These still don’t come close to the inclusiveness that is part of Mara’s vision. They are fairly expensive and generally have a well defined approach to healing that will serve some, but will not help if you don’t fit their paradigm.
If this was just a dream to give better treatment to people with chronic TBD it would be important, but what should be understood is that without facilities such as Inanna House many people will not receive appropriate treatment.
They will suffer and some will die.
Wealth almost always gets you better care, but usually even those without resources get the basics in America. NOT SO WITH LYME. Even the wealthy get neglected when they have chronic Lyme disease. The failure of the medical system to comprehend chronic inflammatory illnesses that fall outside a few well defined diagnostic boxes is amazing. It is a product of our current medical and scientific educational system.
Factory medicine is designed for and is brilliantly effective in the acute stage of most illnesses. Think war injuries. That’s where big intervention medicine has its roots. Asclepius tended the Greeks at Troy before he was made a demigod – this is good stuff – it will save your life. The miracles of modern medicine are mostly based on battlefield medicine. Not many vaguely healthy people die of infections anymore- that used to be the main cause of death. Same with major injuries – get to the hospital and even if you are fairly mangled they can put you back together. Our hospitals were developed on the strict hierarchical structures of the army. The biggest change is that for awhile the doctors were the generals and now the accountants and statisticians are.
Where modern hospital medicine shines brightest is when people are in critical condition or suffering from acute illness or trauma, medicalese for “it just happened.” With an acute appendicitis the hospital and surgeon is a good bet, but they are useless for preventing the problem and not much help for recovering well.
With acute Lyme (acquired within the 6 weeks), it often responds quickly to oral antibiotics and probably herbs, as well. In many people their own unaided immune system will do the trick. But many people are not diagnosed with Lyme within 6 weeks of being bitten. The tick is not seen, symptoms don’t develop, or they are not specific enough to cause suspicion of Lyme disease. The disease is there, but no one notices it yet, or at least it is not identified. If the person’s immune system is not strong enough to keep the infection under control, or another stressor leads to the infection coming out of hiding, it is already well entrenched.
When we get past acute Lyme disease to Lyme disease that has been around for 6 months and more – we are now in the land of chronic Lyme.
Black and white.
Chronic Lyme is not the land of black and white diagnosis or treatment protocols. Tick borne diseases when they persist don’t fit the military model of health care at all. This is where patients fall through the cracks in the current health care system. Because the illness is not understood, patients are marginalized, stigmatized, mistreated, or left untreated at all.
Every patient is different – there are people who will respond beautifully to IV antibiotics and others who will crash and burn.
What is right for one is poison to the other.
This is one reason chronic Lyme is poorly understood.
Now is when Hygea – healthy living and health promoting environments are needed to balance the Aesclepian modern hospital. This is about balance- we need both acute intervention and supportive care- which is more important depends on the situation and the individual patient. With Inanna House, we are offering both.
Katina spoke about her personal journey with Lyme disease and how she found hope and healing using Homeopathy. After the lectures the floor was opened for questions, and there were plenty to go around.
Feedback from a Lyme patient who attended the event:
Oh, wow. It felt so good to be surrounded by such incredible human beings! The energy was so positive and supportive in the direction Inanna house is moving in with regard to treating Lyme Disease. The speaker panel was down to earth and spoke with such heart. Hearing Mara and Katina’s stories moved me to tears. They have such courage, and conviction. I know a lot of us have similar life experiences with having Lyme disease. It was held in the place where the wine tasting bar was. Beautiful knotty pine walls made it a cozy & inviting atmosphere for me. Thanks again for your part in helping me get there.
- Rayeanna
Inanna House is so thankful for all those that pulled together to throw an amazing event. The food and wine were delicious, the speakers were knowledgeable and entertaining, and the guests were fun and encouraging. Inanna House is proud to be part of the Lyme community.
Plans for the next fundraiser are already in full swing. If you would like to help out and get involved, go to www.InannaHouse.orgto contact us, we would love to hear from you!
Inanna HouseInanna House is the vision of Mara Williams NP. She sees it as an oasis of peace, health, and healing for those with chronic Lyme disease. Inanna House will be a residential facility for those who are debilitated by chronic disease, and in need of intensive therapy. The treatment would be designed to address all aspects of healing, including the physical, emotional, mental, spiritual, and energetic. Mara is the author of Nature’s Dirty Needle: What You Need to Know About Chronic Lyme Disease and How to Get the Help To Feel Better, the parent of a chronic Lyme patient, and a health care provider at Gordon Medical Associates.
Dr. Eric Gordon has established Gordon Medical Associates as an internationally recognized center for the treatment of patients left out by the conventional practice of medicine. “My deep respect for the individuality of my patients is the heart of my practice.” Dr. Gordon knows there is an interwoven complexity to these illnesses. There is a layering of the body’s adaptations to environmental toxins and infections from pathogens that is unique to every person, depending on their genetic susceptibility, organ vulnerability, toxic exposures, medical history and life circumstances. The body’s various biological systems – immune, endocrine, neurological, gastrointestinal and so on – influence each other and are influenced by each other, both in the development and progression of illness, and also its resolution.
Katina Makris is the author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit. At the peak of her career, Classical Homeopath and health care columnist Katina Makris was stricken with a mysterious “flu”. Only after five years of torment–two completely bedridden–and devastating blows to her professional and family life was Katina’s illness finally diagnosed as Lyme Disease. But diagnosis was only the beginning of her journey toward healing. Katina Makris’ vivid story offers practical information for diagnosing and treating the bacterial invasion, as well as powerful guidance for mending the broken spirit.
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