Few minutes to fill out the Lyme Disease Map Project!

Inspiration for today


LYME DISEASE MAP PROJECT - take a few minutes to fill it out!

A friend who had Lyme passed this along to me and I hope each of you who has had Lyme or has Lyme Disease will take the few minutes to fill it out: the Lyme Disease Map Project.

The Lyme Disease Map Project is a voluntary study to evaluate the effectiveness of social networking for public health education and to prevent the spread of Lyme disease. To explore the map, click on the pinpoints and read the personal stories of people who have had Lyme disease.

It took me less than 4 minutes to pinpoint myself (no identifying information) on the map, and explain my story in brief. If we can get all real Lyme cases on this map, we will have a better idea of how many people really have Lyme (according to us, not the CDC or MDs who do not believe in or even report the Lyme epidemic). More about this project project.

On another note, I have been dealing with some ups/downs physically. I know all Lyme warriors go through this rollercoaster of UPS and DOWNS, whether they are small or big (let me tell you the good news is that they get less intense until they are really mildly bothersome). I do have a lot of great information to pass along that I learned from many healers, LLMDs, a naturopath on addressing all of this. I will write this out in another post soon.

I also will do a post on "What to do when antibiotics are no longer an option." This was the case for me many years ago after a few years of treatment with antibiotics; even with a picc line in and daily improvements with IV antibiotics, I had to stop because of the acute pancreatitis I developed from the antibiotics. I was hopeless. I had tried herbs before, and they were not strong enough to counter the level of Lyme and it the co-infections that were ravaging my body. I believed antibiotics were the ONLY thing that could cure me. But this was a blessing in disguise because I found an incredibly potent holistic treatment protocol that has worked wonders and really got me to where I am today! More to come soon...Remember, there is ALWAYS hope...when one door closes, another really does open.

Tidbits of Health Info

I am going to start using my blog as more of a dissemination of information for those with Lyme, recovering from Lyme, or other chronic illnesses (rather than as an update for my friends and family). I also am in the midst of writing my full protocol and what worked for me to get past Lyme Disease. I know different things work for different people, but I want to share what I have learned.

I have transitioned into the world of wellness, working and exercising again, having recovered from Lyme though I still deal with strange things and symptoms occasionally. So I still eat the most healthy diet I can (most of the time), take care of my body, mind, and see the practitioners I need to to make sure everything is doing well.

Detoxification
Detox is essential when on treatments (antibiotic or holistic) and even when not on any kind of treatment. This is because there are toxins everywhere in our world. I keep learning more and more about what is toxic everywhere, and it frightens me. I do what I can (and can afford) to keep myself safe, but I also try not to over-stress. I realize stress is the grand exacerbat-or of any illness or symptom!

• Detox Smoothie: 1 bunch organic dandelion greens, water, 1 full lemon (can keep peel on or off, as the peel itself is very detoxifying; make sure it’s organic if using the peel), 1 organic apple (I use Fuji), and blend. This comes out in a great consistency if you have a Vitamix. Dandelion greens help cleanse the liver as does lemon. Apple is great for the gall bladder, and helps take away the bitter taste of the dandelion green and smoothie and make it palatable. Additionally, if you are on IV antibiotics, the apple is great to help cleanse your gall bladder (I did this smoothie 5x/week when I was on IV meds for Lyme). Other benefits of dandelion I just learned here.
• Mosonatural bags. I stumbled across this product at a Golden Gate National Park store at Land’s End in San Francisco. I bought one for each room and the car. Made of 100% Moso Bamboo Charcoal, this air purifying bag is non-toxic, fragrance free, and scientifically proven to absorb bacteria, harmful pollutants (including formaldehyde, ammonia, benzene, chloroform, and other gases emitted from paint, carpeting, furniture, rubber, and plastic), and allergens. I am still sensitive to chemicals so this is a great product, and a great addition to keep your environment clean.




Emotional Well-Being

I think most people with Lyme Disease or any other ongoing condition understand the connection that emotional well-being has to our physical health. I firmly believe my work with many different healers and practitioners for years around my past emotional patterns was half the reason I got better. I think each person is dealing with a different set of stressors, and each person internalizes them differently. I will go more into detail in future posts, but I have to say as I encounter any fear, stress, anxiety, or sadness in daily life, meditation has an enormously POSITIVE impact on any of those feelings.

I went to a 45 minute meditation class Friday, and did some basic sitting meditation with Pranayama breathing. I felt 50x better than when I came in, feeling a bit sad, anxious, exhausted, and in a lot of pain from a recent car crash a few weeks ago. I highly recommend even 5 - 10 minutes a day of meditation. I have been practicing meditation for 8 years, but I have not consistently practiced. Even when I was sick. It was sometimes too scary to go sit in that place, but often it was what I needed most. When I did practice, especially consistently, I felt the most balanced.

Diet

I still eat a primarily gluten-free, dairy-free, alcohol-free, caffeine-free, very low sugar, anti-inflammatory diet. I cheat once in a while but I find I feel so much better when I eat this way. The reason for taking out these substances is that it reduces inflammation. The removal or reduction of sugar is also a huge part of creating a well-functioning immune system. There are many studies that show sugar feeds cancer cells and wreaks havoc on immune systems.

Before I got sick, I ate 4 pints of Ben & Jerry's ice cream weekly. Plus cookies and candy. And sweetened drinks. I always had a high metabolism, so gaining weight was not a concern, but I had this unhealthy high-sugar lifestyle since I was a little girl. I slowly weaned off of ALL sugar (over 3 months), including vinegar and honey. It was a painful experience, headaches, irritation, etc. But I don't even crave sugar anymore. I actually feel sick if I eat too much sugar. I remember cheating one Thanksgiving when I was treating Lyme, and eating pecan pie, pumpkin pie, all kinds of desserts. I felt sick for a week straight! I eat fruit now in moderation, and occasionally treat myself to a dessert when I crave it. If all of this seems overwhelming, try to simply cut out one item at a time, and do it slowly. You don't want to overwhelm your body. And you want to keep some happiness in there. For me, eating is joy. So treating myself to something delicious and 'off' my diet every now and then keeps me happy.

FYI, I based my diet on the Body Ecology Diet, a book someone recommended to me. Highly recommend it. It explains all the reasons for cutting out certain foods as well as recipes.

*Note, I am receiving no financial or other compensation for the books or products I have mentioned or endorsed today; I am doing so because of my personal positive experience with them.

Wishing you health, happiness, and well-being!

Tribute to a Fallen Lyme Warrior: Jeremiah K

Tragic news about Jeremiah Katches, a Lyme patient who passed away a few days ago. This tribute to his life and their relationship with him by Mara Williams and her daughter Sara Donnelly, who I have been working with on Inanna House. The contents below are viewable with pictures at: http://www.inannahouse.org/. Mara's daughter has late-stage Lyme and Mara and Sara are fierce Lyme Disease advocates.



From Mara Williams

Jeremiah Katches died Friday February 15, 2013. I know that he was suffering greatly, and in intense pain. I am so saddened by his passing. His art speaks to the man he was- creative, loving, strong, and kind. He got Lyme while in the military. He fought for the United States and then his country let him down by denying his illness.

Too many are suffering for years and then dying. How can a soul prevail when one continues to suffer and not move forward? How can someone recover when they have limited resources? Treating Lyme is expensive and all consuming, sometimes for years. Spiritually, I believe no one agreed to take on these infections but because of other agreements were vulnerable to being overwhelmed by infection.

Jeremiah had a deep faith that helped to give him hope. He was a fighter. And, now he is gone from this world. Let his passing be a galvanizing point of light for the rest of the Lyme community, that along with all the others who have not made it, leads us to become one, united to build a place where healing can happen for anyone, including those with no ability to pay.

If every person with Lyme, and every one of their family members and friends, were to donate just five or ten dollars, we would have enough to build at least two Inanna Houses. I have no agenda saying this other than to make you think. If Inanna House had been a reality, Jeremiah might have made it. I pray that not another person dies due to Lyme disease. May the power of community make it so.

Thank you and Blessings, Mara




My daughter Sara, who has mostly remained behind the scenes in the creation of Inanna House, chose to write something about Jeremiah. They became friends after working together on his Lyme Artist of The Month page. She speaks from her heart, saddened by our loss, as so many others are...

From Sara...

My name is Sara Donnelly, I am 34 years old and I suffer from Chronic Lyme Disease. I suffer because my fellow human beings are suffering. I suffer because my sister suffers. I suffer because my friend Jeremiah was suffering, and is now gone from this world.

My suffering does not come from the physical pain that so many Lyme patients have, because in fact, I have never been bitten by a tick. My suffering does not come from the insomnia, vomiting, fevers, and shakes that so many Lyme patients deal with daily, because in fact, I don't have the actual Lyme infection.

My suffering comes from a place of knowing that if one suffers, we all suffer. My suffering comes from a place of knowing that there can never be right, if so many are wronged.

I got involved with Inanna House as a way to help my mother. Inanna House was her vision, her dream. It was through communications everyday with people needing help, no where to go, no money for treatment, frustrated, overwhelmed, alone, that I saw it was way more than that. I started to "get it". This is a huge issue, enormous. It is not only isolated to my sister, or a few people here or there claiming a mysterious disease that no one seems to know about. This is a debilitating, painful disease, that in fact, is killing people.

I came up with the idea for the Inanna House Lyme Artist of The Month shortly after Jeremiah reached out to me on Twitter. He had heard about Inanna House and wanted to help, he wanted to do something for the Lyme community. That was the kind of person he was, even though he was suffering so much with his own illness, he still wanted to help others and build awareness. It was from seeing his passion and love for photography that I realized it was through art that he, and so many others, cope with the hardships of Lyme. I asked him to be our first artist. He was so ecstatic about showing his work and telling his story. He loved taking photos, it was his out, his escape.

The current health care system failed Jeremiah, there is no other way to say it. I can not help but feel as if I failed him as well. He was crying out for help, he needed help, he did not get help. He did not have to die. He was a warrior and fought through more pain and hardship than any man should have to in one lifetime. There is only so much one can take, and I pray that he is well now. I pray that his broken body is strong and he can once again be active, run around, shoot some hoops, look down upon his family that he so loved, and feel no pain.

I know that because I do not have actual Lyme disease that I can never fully understand what it is like. I want you, Lyme community, to know that I am here though, and now more than ever we need Inanna House. We need others to see and realize that this is out of control, criminal, and nothing short of a travesty. We need to come together and make this happen ourselves. We need to become like water and make our own path. We need to build the new reality that makes the old model obsolete. I promise, for you, my sister, others who have fought but lost their battle, that I will not give up. And I promise you Jeremiah, my friend, that I will not stop fighting for the change you so needed. I will miss you, as will so many others you have touched in this life.

Sara

DAILY INSPIRATION

I know many of you are still struggling with Lyme Disease (or for those of you that are not dealing with Lyme Disease, perhaps something else). One of my dear friends who started this journey with me at the same time (we 'met' through an online support group and became dear friends through our struggles) still struggles with Lyme Disease. My heart breaks when I hear that she is still not doing well and unable to feel like herself in most ways.

Having been blessed with recovery, and a normal life again, I feel it is my duty to share what I did to get better with others. At the very least, I should provide inspiration to those who are still struggling. When I was undiagnosed, sick for years, and then sick through treatment for years after that, I looked everywhere for HOPE from someone who had recovered from Lyme. I could not find but one. This, of course, contributed to hopelessness.

I am here to tell you that you CAN and WILL get better. I never DREAMED I would be doing what I am today. I have started working on my small booklets (the most important of which I believe will be an outline of everything I did to get better) to share with this community. I promise to work on them more in the New Year (but work and life are quite busy), but please feel free to bug me via email to encourage me to finish them. I know not everyone will get better the way I did, but I have a lot of information to share that I believe can at least help.

For now, I will provide you with some hope. When everyone else is celebrating the holidays and you feel blue (I remember this very well from years past), please remember that ANYTHING is possible. Miracles do happen. My first LLMD told me I would never get better (I quickly changed doctors). I proved him wrong. HOPE can never be taken away. If you want some inspiration from days when I was in IV treatment for Lyme and could see through the light, see this post. To that vein, here are a few inspirational quotes:

"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, best-selling author.

"Kites rise highest against the wind - not with it." ~Winston Churchill, was a British politician and statesman known for his leadership of the United Kingdom during the Second World War.

"Little minds are tamed and subdued by misfortune; but great minds rise above them." ~Washington Irving, was an American author, essayist, biographer and historian of the early 19th century.

Also, for those of you really feeling you need to try something new - 2 women on the CA Lyme group who did not get better through traditional LLMDs or other complicated holistic treatment posted that they BOTH became symptom-free and healthy through an Ayurvedic doctor from India (I am not promoting this doctor nor do I get any sort of incentive for promoting him). He is visiting the U.S. in 2013. I also saw a doctor in NYC for many months (and still work with remotely) that helped me get to where I am today. I am happy to provide either doctor name to you in a private email.

With warm wishes for health, happiness, and peace...Mona

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.

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!

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