Monamorphosis: November 2012

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

DEFINITIONS

Late-Stage Lyme Disease: An infectious bacterial tick borne disease that is transmitted through the bite of a tick, though many doctors believe it may now be transmitted through some infected fleas and mosquitoes. When first bitten, if a person develops a bulls-eye rash and is aware that they have been infected, the disease is easily treated with antibiotics. However, only 40-60% of patients develop the classic bulls-eye rash, called Erythema Migrans. Additionally, the rash is often invisible in people with darker skin, like me. When the tick bite is missed and a person goes months or even years without knowing that they have been infected, the disease enters its late disseminated stages, infecting many if not all systems of the body – limbic, neurological, physical, nervous, psychiatric, cardiac, and the list goes on. At this point, it is excruciatingly difficult, painful, and expensive to treat (note most Lyme treatment is not covered by insurance and highly controversial). Years of antimicrobials and complicated treatment plans (including many holistic methods of healing) are necessary to heal a late stage Lyme patient.

Herxheimer reaction ("Herx"): definition should be "torture." Can be used as a noun or verb as in "I herxed so bad I felt like I was run over by a truck and then dragged by a pack of wolves through hot dry sand." Scientifically speaking, a herxheimer reaction is what occurs during the treatment of Lyme disease and its co-infections. The common misconception is that when a patient is treated with meds, it should be all uphill from there. Medication should make you feel better, right? Very wrong. When spirochetal bacteria (like Lyme) is killed off, it releases a massive load of toxins in the body. These toxins are "neurotoxins" and "endotoxins", which putting it simply means that it is a toxin to the brain and the patients' organs. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process (hence the need for tons of detox supplements, herbs, and strict diet). Herxing can cause a whole host of symptoms, ranging from seizures, migraines, excruciating pain, dizziness, relentless hours of crying, anxiety, heart rate issues, pain, inability to breathe, insomnia, episodes of rage, confusion, memory loss, and much, much more. This, therefore makes Lyme treatment grueling, and very similar to cancer treatment with chemotherapy.

Co-infection: another Lyme-like infection transmitted by the tick that is tantamount to having another Lyme Disease, often with worse presenting symptoms for certain patients (like me). Because the late-stage Lyme patient (almost all of us have co-infections) has been so ill for years, the immune system is more compromised and unable to handle all three diseases (though they are all blanketed under one disease, Lyme). Treatment is also very complicated because the doctor has to be sure to address each co-infection and Lyme and do so in a very delicate balance so as not to Herx the crap out of the patient and on the flipside, to make sure Lyme or co-infection are treated aggressively enough so as not to experience a relapse or flare of symptoms. I have experienced both of these unpleasantries and let me just tell you, they are frickin' miserable.

Babesia: a co-infection of Lyme. Babesia is my worst co-infection, hardest to eradicate in the co-infection world (IMO), causing horrible vertigo, dizziness, crippling depression, sweats, nightmares, fevers, fatigue, air hunger (inability to breathe; that’s why I have an oxygen tank and take beta-blockers), heart palpitations/chest pain that make you think you're having a heart attack, severe cognitive impairments, and neurological difficulties.

Bartonella: another co-infection characterized by migraines, confusion, joint and muscle pain, spaciness, feeling disconnected from your body, cognitive impairments, bone-breaking chills, numbness and tingling in extremities, fatigue, depression, extreme agitation and anxiety. Note that all these symptoms overlap to some degree with each co-infection and with Lyme so it’s often difficult to determine what is the cause of what symptom and sometimes many infections are the culprit. My first 3 months of Bartonella treatment, I became so confused the first 2 weeks that I got LOST in a grocery store (no joke), and put the scissors in the freezer by accident. I also called people and forgot I was calling them and walked away from my dialing phone several times to come back and find someone talking. Truth is stranger than fiction.

LLMD: a Lyme-literate medical doctor. Lyme patients love them. We Lyme patients are very educated about our disease - we have to be; so few doctors know about the severity of late-stage Lyme, most have no idea what a ‘co-infection’ is when I tell them, and most don’t know how to diagnose or treat it. I had a doctor ask me if Lyme was hereditary!!!! wtf? There are so few LLMDs for the huge number of us and on average, most late-stage Lyme patients see 9-15 doctors (over a period of years) before they get properly diagnosed. Seeing a regular infectious disease doc would be suicide - he/she would put you on 28 days of drugs and if you were sick after that, tell you that you have chronic fatigue or what IDSA docs notoriously refer to as "post-Lyme fatigue." Ha! I was on an 8 month-wait list for my last LLMD, and flew to DC every 3 weeks to see him - one of the best LLMDs on the East Coast. Not to mention he costs a small fortune because no LLMDs can take insurance. This disease is a huge political controversy and I explain in detail in one of my posts, entitled: "The Great Lyme Controversy." The controversy is so great, in fact, that the Connecticut Attorney General brought an antitrust investigation against the IDSA (the enemy who writes insurance guidelines for treating Lyme and works with the CDC). The investigation “uncovered serious flaws in the IDSA’s process for writing its 2006 Lyme disease guidelines….The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions. Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification….My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” See http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284.

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