Monamorphosis: The Old Monas: a Picture Story

Wednesday, May 5, 2010

The Old Monas: a Picture Story

I thought I'd post some pics of the old Monas. Most of you knew her at some point in her life. Some of you may have never met her. She intends on coming back. In fact, she has told me she intends to be healthier and happier than she EVER was before this all happened. Getting to that place is and has been a long journey. But I will never give up trying to get there.

Picture story here: http://picasaweb.google.com/monamotwani/OldMona

When I look back at these pictures, I am amazed that I was ever able to do these things. Simple things - like cook a meal, or have the energy to cook a meal with my niece! I think it's been years since I've had even that small amount of energy. But then I see pictures of me dancing, hiking, snowboarding, having the cognitive ability to get through law school and pass the California Bar Exam! All these things I took for granted.

Nowadays, I am happy if I can make a meal and not be exhausted after. I am happy if I can read the front page of the New York Times and remember what I read the next day (or sometimes the next hour). Dancing, hiking, surfing, rock climbing, traveling, those all seem like memories from another lifetime and another body that I inhabited. Even getting on a plane is a challenge without an oxygen tank and usually requires a few days to a week to recover (the hypoxic environment is VERY hard on Lyme patients and causes major symptom flares).

How did I galavant across South America, Europe, India, Colorado, Hawaii, how did I do that? Even simple things like going to a concert. I could never do that now. My noise and light sensitivity is so bad that sometimes I have to wear sunglasses when I watch TV or leave my cherished Target visits (yes, that's what I do for fun) b/c the lights and noise are too much. I haven't even listened to music for the greater part of 2 years because it hurts my ears.

I feel like I've inhabited this strange body - that isn't mine, but that has become mine, this ungodly thin and frail woman who is nobody I know but who I have been for almost 3 years. And so I cannot remember what it FEELS like to have the energy to just leave the house like a normal person for an ENTIRE day, without bags of meds and supplements and bags and coolers of special diet foods and a time schedule because I always tire out easily and need to return home to my nest to nap, and earplugs. I want to just go, just go for a walk, drive to the store, to the gym, go for a hike, spend the whole day playing frisbee, go for a swim, to a concert, for some beers, and dance all night long. I just cannot imagine what that is like. It is so foreign and yet I took it for granted my entire life and now I am 32, and have less energy than my 90 year old grandmother (Aji) who is sitting on the couch with me.

All I can do now is employ the powers of my mind, meditate, believe, strive, and keep believing on days or weeks when I am crying and hysterically ill for what seems like FOREVER and cannot see through the darkness to the end of this long tunnel. In those times, I read the many quotes I have taped all over my walls, one of my favorites being:

"All the powers in the universe are already ours. It is we who have put our hands before our eyes and cry that it is dark We are what our thoughts have made us; so take care what you think. Words are secondary. Thoughts live; they travel far. When an idea exclusively occupies the mind..it is transformed into an actual ...physical or mental state. We reap what we sow. We are the makers of our own fate. None else has the blame, none has the praise. There is no help for you outside of yourself;you are the creator of the universe.

Like the silkworm, you have built a cocoon around yourself.
Burst your own cocoon and come out as the beautiful butterfly, as the free soul. Then you will see the truth.
In one word, this ideal is that you are divine. God sits in the
temple of every human body." - Swami Vivekananda

2 comments:

AnonymousMarch 2, 2011 at 1:28 AM
I know it's totally immature of me to say, but my first thought when seeing this picture was "Why is Mona wearing a helmet in a speed-walking race? And why is she in a speed-walking race in the first place??" Granted, this is probably a triathlon, or some other physical endurance test I could never complete (I have an excuse: I'm Jewish). But still, I had to drop a note to share my ridiculous thought. : )
-Daniel Schweitzer
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MMMarch 2, 2011 at 12:43 PM
Daniel, you are SO funny! It DOES look like I was speed-walking. In fact, I think I was. It was the Muddy Buddy (running and mt biking race) - I am a much better mountain biker than runner, so you may be in fact right that I was speed-walk racing. I love you!
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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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Wednesday, May 5, 2010

The Old Monas: a Picture Story

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All About Late-Stage Lyme: the Disease, the heated Controversy, and the Repeated Misdiagnoses

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