CBS Segment on my Insurance Struggle

Back in June, after I was over $70,000 in debt from medical bills and IV meds that insurance wouldn't cover, getting nowhere with the Appeals Unit at Blue Shield of California, I sent out emails like clockwork trying to find someone in the media who would cover my story in the hopes of convincing Blue Shield to address my case properly. I was at my wit's end with Blue Shield. I've probably logged OVER 85 phone calls with them this year alone. Some of them more painful than others; some of them excruciatingly long with numerous transfers and some of them, which make you want to scream at the person on the other end of the phone and ask if they know what added stress they are causing you when you're basically bombarding your body with incredibly toxic chemo-like meds from an IV pole at your parents' house where you have no friends or life at the age of 33! Ah, but I digress again...

Many phone conversations, emails, 5 months and hours of filming later, a producer at CBS KPIX (local in San Francisco) did a segment on my struggle with covering my medical debt on the news. In fact, there was so much discussion after the FIRST segment, that CBS KPIX aired a second segment to address the controversial nature of the segment.

http://sanfrancisco.cbslocal.com/2010/11/23/healthwatch-bay-area-lyme-disease-patient-fights-insurer/

I am incredibly grateful to CBS KPIX for doing this piece on me. I won't lie - it was exhausting for me to talk about the situation for hours, and do the filming, and gather the hundreds of pages of insurance denials and paperwork for the producer. But worth it. And most of you who know me that I won't give up on anything. I didn't choose to be in the Lymelight, but I am. (God, I wouldn't wish this torturous disease on anyone). And I'll keep fighting them til the end!

After watching with much anticipation (they don't show you what the segment will look like until it airs on TV), my comments to my friends were as follows:



Dear friends,

Glad they did the story and hope it will help my insurance situation, but a bit frustrated that they were perpetuating the most common MYTHS, like saying Lyme disease is USUALLY treated in 1 month and it's rare to have late-stage Lyme like me. WRONG. What was wonderful was the over 35 comments from mostly Lyme patients at the bottom validating this through their own experiences with the disease and with insurance, which resemble mine very closely.

And that ridiculous doctor at UCSF that they interviewed (I understand they have to present both sides), he said that Lyme is treated in 6 weeks. HA! They forgot to mention that Connecticut State Attorney General Richard Blumenthal launched the first antitrust suit against a medical society in the US - against the IDSA/Infectious Disease Society of America (the medical society that master puppeteers these doctors and that says all Lyme is treated in "4-6 weeks") and that the judge found them GUILTY. Lyme controversy: http://monamorphosis.blogspot.com/p/great-lyme-controversy.html. He and the IDSA are the reason I can't get my IV meds covered...

Guess how many people I know that have been misdiagnosed at UCSF who have late-stage Lyme? Over 200. One who was told she had ALS and was going to die. She did Lyme treatment for 2 years including 12 months of IV and is now 99% better and swims 6 days a week.

Guess how many late-stage Lyme patients go to UCSF Infectious Disease Clinic? Zero.

I am very glad they did the story and HOPE Blue Shield will pay me back $100,000 but there is still major media resistance to exposing the mainstream medical culture's denial of this disease, appropriate treatment, and its insurance coverage! I know CBS KPIX was trying to be unbiased but I wasn't so happy when the newscaster called this (my) treatment 'VERY controversial.' I have more than a mouthful to say about that. I wouldn't be experimenting with a catheter in my body for a year unless I knew I was getting better! Nor would I be putting my family and I into tens of thousands of dollars of debt for a treatment I thought was controversial. Controversy, my ass!

Thanks for watching, for your support, but this fight ain't over til I'm in front of Congress testifying against the IDSA. Mark my words, it will happen. First, I have to finish my infusion.

Love,
Mona


Will keep you all posted on what happens. The Department of Managed Health Care (DMHC), profiled in the first news segment, and the CA Department of Insurance(CDI) were VERY responsive to me after CBS called them. Interesting how a little media attention gets you VIP treatment. The DMHC and CDI (both state agencies who oversee insurance denials and disputes) have been incredibly compassionate and helpful in investigating the case.

BUT, Blue Shield is still putting up its walls, and I hope the DMHC and CDI will press them for a fair resolution. DMHC closed my case and I called them to reopen it, when I found that Blue Shield wasn't really reimbursing me for the last 10 months. Blue Shield told me over the phone they used "formulas and allowed amounts" to explain to me why they still can only cover $17.00 on a $2,000 bill (that's for FOUR days of IV meds). Hmm... Though I thought this media piece would signal the last of this ongoing insurance dispute, I see the Universe wants to teach me a long lesson in patience. Patience is not one of my virtues. Perhaps it will be after this.

Update: January 10, 2011 - Although Blue Shield covered my IV meds for ONE of the last 10 months, they have decided to abruptly stop coverage of all IV meds and equipment as of December 24, 2010. I just found out they stopped coverage after receiving a $1500 bill for 1 week of supplies and meds. I was IRATE. Angry, pissed. Now I realize that YES, this is worth devoting my energy to, it's a lot of debt otherwise. But NO, I don't have to be angry and waste my emotional energy stressing out about this. Yes, I may incur oh...$30,000 alone in the next 5 months in additional medical treatment. Is my health worth that price even if it bankrupts me? YES.

After losing any idea what it feels like to be a normal healthy human being for almost 5 years now, I can say with confidence there is NO PRICE one can put on health. Be grateful...that you can just get up and go to work. That you can make it to the train or bus station. That you can get your own groceries and cook a meal, and go snowboarding, all in the same day! That you can walk 6 blocks in the park without worrying how you'll get back home because you know you cannot make it that far. That you can go to Cirque de Soleil or a movie without freaking out at the light and noise. That you can get errands done in one day instead of three because you don't have to sleep 14 hours a day. That you can shop til you drop because there is no time on how long you can be standing up. That you can sip the sweet taste of sugar and alcohol and gluten! Mmmm...That you can get on an airplane without assistance, or a wheelchair. That you can carry more than 3 lbs. on your left hand because you don't have a catheter in it. Oh, be grateful, because it is the most precious thing you have. Losing it, though, has probably been a gift to me. I know I will look back one day and realize this time was a blessing in disguise. I realize it even now on certain days...Ah I digress..

Not to get up on my high horse here, but I have done a pretty damn good job fighting this insurance appeal (and my two disability appeals) from every angle for THREE years now. I've tried letters, legal means, media outlets, and the paperwork is endless. I'm still fighting but I have no choice other than to keep taking the treatments that are getting me better. So, yes, it SUCKS that those fuckers at Blue Shield have put me through so much shit. But, my health is more important. THE most important thing. It will all work out. Somehow. We've made it through this far. And thanks to MANY of you who have donated to help me pay for my treatments. I am beyond humbled.


Sidenote to other Lyme Patients: I have decided to collect information from all Lyme patients as to amount of debt incurred by you and your family for all Lyme treatment (traditional, holistic, HBOT, everything) - a rough amount - and insurance company name. I have received numerous responses already but am hoping to collect a large sample of this data, and post it to my blog to illustrate to people how extremely endemic this disease is, and how many lives and how much livelihood and money it takes from people. Also, thinking of doing an op-ed on it when I have some energy. Perhaps then people will understand it is an epidemic that is looming dangerously, and needs to be addressed.

A great piece in the Roanoke Times

This picture is of a fierce attorney and her husband (also an attorney) assisting his extremely ill wife with IV treatments for her late-stage Lyme Disease.

My friend sent me an excellent series of articles done in the Roanoke Times (Virginia) on the harrowing stories of many Lyme Patients in Virginia as well as the massive controversy that follows the disease, the patients, and especially the doctors who treat us (LLMDs, "Lyme-literate medical doctors"). See http://blogs.roanoke.com/lyme/2010/12/17/salvos-launched-in-lyme-dispute/#comment-152.

The stories of these Lyme patients are detailed, and bring to life the painful reality of this disease. The stories are almost identical to mine and thousands of others, years of misdiagnoses, hundreds of thousands of dollars of medical debt, searching for someone to treat your Lyme for a long period, painful treatments.

Despite what some doctors say, the disease is growing to epidemic proportions. And I'm not about to stand by and watch it ravage thousands of more people when it can be prevented with education of the masses, but especially MAINSTREAM doctors.

The story in the series above about Taylor Albright, a young attorney who has been completely side-lined by Lyme for years, had a really deep impact on me. She is (well, was) a lawyer as well. "Her husband called her The Tiger. Their colleagues did too." I felt an immediate cyber-connection to this woman I have never met in the article written about her. Although we differ in that she has a husband and three children, I could tell she was a fighter. A real fighter. Someone who doesn't back down, and who will prevail.

And I hope when (not if) she and I get back to being attorneys, she might join me in the fight against the IDSA to get this disease the medical recognition it deserves, and the insurance coverage it requires. As I've said before, I find it no accident that this disease fell into my lap. Some days like the last week, I feel awful, and don't know why. Nothing changed, and I feel hopeless again. Not as hopeless as I used to feel, but despondent and robbed of my life. Especially when I hear of friends having happy hour jaunts, going skiing in Lake Tahoe, traveling the world, even just going to holiday parties. I feel lost when I hear about all the wonderful things my friends are doing with their careers. But I don't scream at the world, "Why me?" anymore. I know why me. I just, well, I am just fucking pissed off some days that it is me. I know my purpose. I do. But, you know, it gets fucking old after 3 or 4 years working towards that purpose when I feel I have nothing to show for it and I just want to go for a hike or even a walk longer than 15 minutes! Or work a full day or be able to make dinner for my friends or get my errands done all on my own.

I cannot even imagine how difficult it is for the Lyme patients I know that have been going through this for 10 or 20 years.

I know to be grateful for everything I have. I do.

Alright, Ms. Taylor Albright, I hope you get to read this and I hope we can work together one day in fighting for the rights of Lyme patients who are too sick to fight for themselves.

Scared

I am fucking scared. I haven't been feeling well the last 2 weeks; hardly getting any sleep for a variety of reasons (and I mean over 4-7 hours, getting under 11 hours a night is like 2-3 hours for most healthy people), probably overdoing it a lot, and now my body seems to have latched on to some weird downward spiral that scares the shit out of me. The kind of fear that I am TEETERING. You know teetering on the edge like a tightrope or inbetween a seesaw, or wait a jigsaw, no a seesaw, my brain cannot function right now and word-finding problems is one of the scary things that lets me know Lyme is acting up in my brain...anyways, I am teetering, feel like I was getting SO much better and doing so well on the IV meds, and FINALLY my stomach and pancreas allowed me to keep taking IV meds consistently without stopping or just infusing every other day without stopping...

But now I've had to stop meds consistently for a variety of reasons listed below, and I'm teetering between hope and peril. What seems like life and never ending illness. One one hand, hope towards wellness and TRUE belief that I can get through this or any illness no matter how many years it has eroded me. On the other hand, I peer over the corner to the other side and see a SHARP dark drop into the abyss, a black nebula where you barely have the energy to put a plate of food in the toaster oven or wait for it because you're exhausted and your head feels like it's spinning and your brain is being mashed up in a blender every time you turn your head or move, and the nausea is so intense you have no idea if you can put anything else in your body and the anxiety is so awful that you are too afraid to sit down with it and meditate because you know you'll just burst out into tears and then THOSE tears will mean I am getting worse and I am too FUCKING scared to even entertain that notion. This is just part of the years long chemo that is my life for 4 years; and this is bound to happen, right? I don't know...my doctor is on vacation for December and I need some reassurance!

It's the kind of teetering (that you other Lyme patients know all to well), where you were doing well and going upward, and think you've FINALLY turned the corner (that's why the non-profit Lyme advocacy organization is called "Turn the Corner") then something (there's always something at some point) comes in and swoops in to FUCK with your head, tears away your progress, and you think you can make it through one more physical and emotional rollercoaster (after all, all Lyme patients go through these torturous rollercoasters hundreds of times in years), and your ability to walk 10 minutes or 15 minutes or get a few groceries go to dinner or see a movie is compromised, and you feel like you are inhabiting an alien's body that is not yours and you see your friend coming back from a 10 mile run and wonder HOW on EARTH can people do that? RUN, for 10 MILES?? I can barely make it 5 blocks! But I used to rock climb and run and snowboard...what eerie planet am I living on and WHY HAVE I BEEN HERE SO FUCKING LONG!!? 4 years is enough! I'm 33 and I want to return to normal life!

And then you want to cry again...But this neat old outdated defense mechanism our body developed called "fight or flight: causes us to run the other way (despite years of knowing to face those feelings and many spiritual texts and meditation classes encouraging one to do so), away from the anxiety, the fear, the sadness inside for the loss of so many years of my life - almost 5 years for me - and you avoid the pain until one day, like a champagne cork, it EXPLODES and you burst into tears for no reason over your computer at, oh say, 11:44 pm, and want to throw yourself under the table in the fetal position and have someone wake you from this horrible dream that is your life. But it's not a dream. It's real.

And then I remember that I HAVE to keep believing, no NOT just believing, but KNOWING, that old Mona will return, that she is on her way, slowly but surely, or even speedily, because I do believe in miracles, though right now I believe in Klonopin and Neurontin and that's about it. You know what I'm talking about Lymies, pop that Klonopin and Neurontin for sleep and the Lyme creatures that make you feel you will vomit through your head subside til morning. Ahhhh...

If the feeling like crapola is attached to herxing (See definitions on side for newcomers) and treatment, I at least know WHY it's happening. Even then it's hard, but I can have some rational understanding of what is going on. But I have no idea what is happening. And my overanalytical lawyer brain cannot handle NOT KNOWING. I went through NOT KNOWING what was wrong with me for so many years and that was such a fearful place, watching your body erode and having over a dozen doctors tell you there is nothing they can find wrong with you.

I think I'm regressing because I have been off and on IV meds erratically over the past 2 weeks. My pancreas and stomach issues resurfaced a little, so I had to take a few days off IV, then I always take a few days off before flying so as not to feel like complete death on the plane. I am flying back to cold snowy, suburban Michigan tomorrow, to stay with my parents for 2 weeks, visit my 90-year old grandmother, and mostly, get some rest and get in the IV treatments at a rapid pace. I don't think I could keep up with them so rapidly here because then I couldn't function (at least for the first part), so I have my parents to get everything and I can just lay in the recline position and hammer my body with IV meds and kill of those nasty little Lyme bugs...stopping treatment so quickly can often cause the bugs to get resistant or cause a relapse. I don't know what is happening but I've been under a LOT of stress the last month (aside from the regular being ill and financially ruined)...other stuff...Stress is a BIG no-no for any illness, but ESPECIALLY Lyme.
SO my self-prescription is to RELAX, decompress, and meditate, and nurture myself.

Anyways, please I ask you, dear blog-reading community, to say a little prayer, or ask some higher being above, the Universe, whoever you believe in to send some light and some love and to keep me going and make sure I turn that corner FOR GOOD. I am so close, and then I feel so far away again. I think I am also probably subconsciously emotionally freaked the eff out about going back to Michigan, where I spent almost a year totally depressed, attached to an IV pole for 6-8 hours a day everyday living in a suburban neighborhood with my PARENTS every day and looking forward to Target outings for fun.

I remember being there and being SO ill for most of the time (not all of it), but more so just SO isolated and alone, and being at the end of my rope, so close to the end I didn't want to go on anymore in this world, and I'm not embarrassed to say that because most Lyme patients I know have been there and it should be acknowledged. I remember crying under yes UNDER my bed so many times, feeling trapped in that house, in that life, and that I would never be well again or be able to live in SF again....but with the help of my fairy godfather/friend who loaned me money, I made it out here and have been IMMENSELY HAPPIER....and I haven't been to Michigan since I left in September and I'm sure some part of my body is scared to go there again and be in that environment and be reminded of the absolutely worst year of my life....not to mention the dark dreary sunless days and snow, oh and speaking of snow that reminds me of laying in the backyard at 2 am in he snow in my snowpants one night crying on NYE while my parents were at a party and I was home alone and ill...ugggh bad memories..suppress suppress!!

OK, I hate airports (let's see I'm sure TSA will inappropriately frisk my picc line in my arm, I'll get into a battle with them, they'll question my 800 bags of IV meds, syringes, needles, 800 medicines, and ask if I'm a drug mule OR part of Doctors without Borders. I wish I could say the latter). I also hate when I'm too weak to walk through the long security lines and get a wheelchair and EVERYONE STARES at me like some freakshow as if to say, "Why are YOU in a wheelchair? You're young and healthy." HA!! Looks can be deceiving, I deceive my friends and family all the time. Nobody knows what is going on inside...If I had an NYSE ticker on my forehead sometimes (esp when people said "You look Great!)," it would say, "I feel like I'm going to sweat through my clothes from my fever and then shiver to death from chills and I want to barf on your shoes. Is that OK? I only look great because I put nice clothes on and makeup and blew dry my hair to assimilate as a normal person in society!"

Alright, happy holidays people. BAH HUMBUG.

An Angel from above: Sweet Cindy

Thank you to my DEAR friend Cindy, a sweet angel I met 3 years ago (pictured top left). She wrote a piece about me on her blog that I feel honored to share. I am humbled by her words and love her to pieces:

http://anartsychick.com/2010/11/24/a-brave-warrior/

She is also a talented artist, and painted a picture of me at top right.

Cindy was magic from the moment I met her...she had early onset (at the age of 47) Parkinson's start in 2007.

About 3 years ago, when I was sick, with no diagnosis, but wandering in the world of loneliness and fear and spiraling downward health-wise and was no longer able to work, I pushed myself and apprehensively went to a 3-day yoga/meditation retreat and met Cindy Deluz. She and I couldn't do most of the yoga classes and opted just for meditation, but I looked forward to our little chats outside on the wooden cabin porches when everyone else was dong yoga...talking about our lives and our struggles with our illnesses. How some of our closest family members couldn't accept our illnesses and the pain felt in that. And how safe I felt talking to her, validated, accepted, heard, understood, all with a jovial smile and warm light radiating from this stranger to me in such a short time.

Despite Cindy's battle with this debilitating disease (we actually have very similar symptoms and share them and laugh about them by email), Cindy has continued to shine like a light. She has given to the world in so many ways, and to me, she has been an ANGEL. She discovered her hidden talent as an artist during her battle with Parkinson's and makes incredibly beautiful art pieces. She has sent me more care packages than I can remember, filled with quotes and feel good 'soul food' as she calls it, and beautiful prints, cards, magnets, necklaces with her art on it. I only met this woman once, but she pierced my heart with the arrow of unconditional love. And we remain good friends still and hope to reunite in 2011 once her daughter can drive her down to see me!!

It is through meeting amazing friends like Cindy that I know God or the Universe or whoever it is you believe in is saying, "I'm looking out for you." These seemingly small chance meetings are really just little ways for angels to come into my life. Thank you, Cindy, for inspiring me with YOUR courage, your happiness, your smile, your love, your friendship. You are beautiful inside and out.

Please consider perusing Cindy's website, Whimsical Art Designed for the Heart: http://www.cindydeluz.com/. She makes amazing, unique prints, cards, and art. It is incredible...I have given her cards to friends, nieces, and they all love it. Perfect holiday gifts!

I'm in the 120's!!

HOLY MOLY!!! I went in to see Dr. G today, my amazing Lyme doctor, and I weighed in at 121 lbs!!!!!!!!!! YEAH BABY!! WITH clothes, yes, but as many of you know I lost 30 lbs and was a very skeletal 105 lbs. at one point (a size -1 if there is such a thing), complete with my ribs popping out of my body. It was very unhealthy. I'm eating like a champ and finally some of it's staying on. Now my size 0 jeans are actually tight on me and even my size 2 ones are uncomfortably puncturing my stomach! I know I should be careful what I wish for (more lbs.) but this is definitely an indication of better health. A hallmark! 121 baby!!! Woot woot!!

WOW, I haven't been in the 120's in over 3 years...Well I'd say 10 more lbs. and I'll be at my mark. But that will be muscle so probably will have to wait until I'm allowed to exercise again. Anyways, one score for today. Except that I'm exhausted because I hardly slept. Oy.

Sweet, painful, inspiring IRONY

IRONY. Definition: an outcome of events contrary to what was, or might have been, expected.

When I was in law school, I took part in the Civil Justice Clinic. The Clinic was a semester long and offered amazing professors to guide a small number of students in working on real cases and representing real clients, primarily from low-income communities. My case was a Disability Case. I was assigned to represent a homeless woman who had applied for Social Security Disability benefits (from the government), was denied, and who had the right to a hearing on her claim before a Social Security Administration Administrative Law Judge. I took the case from start to finish in front of the Administrative Law Judge and won!! It was the most memorable day of my law school experience. That was 2004.

It is now 2010. I expected to be a successful civil rights and human rights lawyer, championing for social justice causes and helping people that could not afford legal representation or who have been wronged in some way and who could utilize the law (and my free legal counsel) to help them rise above their circumstances. Ah...what we expect of ourselves. What we hope and dream our lives will be. Many wise adages say that our live will not turn out like we planned. Mine, as I've mentioned before in a visual I like to use, took everything I knew, threw it in a blender and vomited it up on the kitchen walls. That is what happened to my life.

Ah the sweet painful irony. Instead of being that lawyer to the poor, activist that I hoped to be, engaged or married, able to travel, snowboard, mountain bike, rock climb, and do all the other things I love so much, I have been sick with a chronic debilitating disease for 4 years, unable to work, exercise, function as a full adult for over 3 years, and paying $4,000+/monthly in medical bills for Intravenous medication to go into a semi-permanent catheter in my arm that my insurance won't cover because most of the mainstream medical community doesn't treat late-stage Lyme disease.

Instead of helping disabled clients facing Social Security disability denials (which by the way often pays a measly $900 per MONTH; how can these people afford food and clothing and shelter and medical bills with that kind of stipend?!), I am fighting for my own disability benefits. I dropped off over 3,000 pages of medical records that my parents helped photocopy at the Social Security office a few weeks ago.

NOPE, did NOT see this one coming. Did NOT plan on being disabled at 29-33, years after graduating law school. Who the hell plans on that? The ironic part is I now have been in the VERY SHOES my PAST CLIENTS have been in, literally walking into the Social Security disability office, taking a number, waiting in the lifeless stale depressing office, and fighting the system of bureaucracy just to get a small monthly stipend I paid into when I worked.

If it were not for my parents, donations to my blog, and my enormous tribe of loving, amazing, generous friends, I WOULD be homeless. I would have nowhere to go and some of these people if not most, had nowhere else to go. That CRUSHED my heart into a million little pieces.

The SS OFFICE EMOTIONAL BREAKDOWN

When I went to drop off my medical records and speak to the Social Security disability office about some things the online system messed up, I was confronted by
a reality I had not seen in years, since my days volunteering with homeless clients in law school. There was a man outside who looked very poor, had 1 leg in a wheelchair, nobody to help him.

I asked him if he wanted me to open the door to the building, and he declined. I went through security and took a ticket and waited in a depressingly lit room filled with people that, without a doubt, were severely disabled, very poor, if not homeless. I looked around and felt DEEP SOUL-wrenching sadness in my heart. Me - a lawyer, having so much trouble with the bureaucratic hurdles with my application, and most of these people didn't have help filing out their applications. Many would be denied, and then they would have to find a pro bono lawyer to help them appeal their case (let me tell you these are not easy to find).

Did they know about these resources? All this for about $900 a month!? I couldn't stand to think of the hardships all these people faced, and how I wish I was not sick and was able to work again and do these cases on a pro bono basis again. Now!!

There were over 30 people there that I could have been helping. That is the ONLY REASON I WENT TO LAW SCHOOL!! But instead, I was there for myself. I couldn't take it - everywhere I looked, I saw sullen, worn faces that tugged at my heart. I started bawling. Crying hysterically. I put my sunglasses on so people wouldn't notice. I stared at the screen waiting for my number to be called and wondered HOW I GOT THERE. How did I get to the disability office for my application when I was supposed to be helping those people as an advocate? It was too much. I was also having a rough day with treatment and that didn't help.

Three years of not working and feeling helpless when my whole REASON for going to law school was to help others. I couldn't stop crying, and then the man across from me, said, "This is Toto, she is my girlfriend, she is my girlfriend because she scratches my back. This is Toto." Um, what????!! There was nobody sitting next to him, and clearly he had a mental illness. But at the time, it was too much to bear, I felt like I was in a movie and my head was spinning from the infusions and I felt like I was going to just lose it and throw myself on the floor and flail about (except eew it smelled like stale pee, sort of like the stairwell to the parking garage in law school) crying until my fairy godmother came to rescue me.

Finally, I was called into the office to discuss my case, and I had to wipe away all my tears, push all that sadness, all that grief, all that feeling of helplessness down deep into my throat, stuff it away, so I could talk to the man at the office. IT WAS AWFUL, my throat was saturated with a sadness, a glimpse of who I once was and could have been. Who I could have helped in three years instead of sitting attached to an IV pole and living in pajamas and being miserable.

I know now that I will be a better lawyer and advocate than ever before having sat in these people's shoes.

BACK To MY SOCIAL SECURITY CASE and "Gwen," my client
As I mentioned, in 2004, I was representing "Gwen" (name changed to protect confidentiality) at the Civil Justice Clinic in law school.

I wanted to do a housing or employment case (you could choose what type of case you preferred to work on at the Clinic). The Disability case wasn't my first choice but I spent many hours up until 3 am for four months going through boxes of medical records of Gwen, interviewing her, counseling her, researching, and writing a brief for the judge that would eventually win her disability benefits back. She was homeless and living in a car at that time. The benefits were only $800-900/month. How she could even live on that was questionable, but it was something. We tried to get her set up in low-income housing after we won her case but there was a waiting list. I could go on for hours describing the horrific challenges that the homeless population experience.

I don't think it was any coincidence I was assigned to represent Gwen in a Social Security Disability case 6 years ago. I am now basically advocating for myself in the same case. If I didn't have family and friends to support me financially, I TOO would be living in a car like Gwen. I am blessed and so grateful for the things I am given because someone with very little family or no resources could not survive a disease like late-stage Lyme.

INSPIRATION
Where is the inspiration in this seemingly sad story? Hmm, let me count the ways:

I have seen the world in ways I never thought possible.

I have lost all material things and physical and cognitive abilities and through regaining them slowly, have discovered a gratitude for life that has never been experienced before.

Walking through that disability office was painful, but it gave me a refresher course in WHY I am on this planet - to make a CHANGE. To help others, and that IS catalyzing my recovery. Gratitude has new meaning in my life; a 15 minute walk is an exciting feat for me nowadays. I am grateful, for though I could complain about my circumstances, I probably have it much better than many of the homeless people I saw there at the SS office. I am in a position to use my experience to help others and create change - in the Lyme world, in my field of work as a lawyer, in so many ways. I have a responsibility. To NOT take this experience and use it for good would be morally and ethically irresponsible in my eyes.

TREAMTENT UPDATE:
(1) Saw Dr. G last week; she did some memory tests by asking me what I had for dinner the night before and how long it takes me to remember. This time she asked me how often I am SHOWERING. I think to assess fatigue if the rounds of treatment make it too difficult to do that. I don't smell, I assure you. I do shower! Every other day, because showering with a picc line on your arm has to be wrapped thrice is not enjoyable.

(2) Was doing SO well for 2 weeks straight (with some minor hiccups) and was SO happy and then I knew I had to prepare myself mentally and physically for the pain and wrath of new treatment and what it would do to me. Saturday I laid on the couch, felt like I was drooling on my leopard print Snuggie (Thanks Ellen, makes me laugh every time I see it) watching the TV hoping food would magically make its way to the couch because I could barely get up to reheat anything. The day after, I was so nauseated I felt I was going to barf on my friend. 3 days later and 2nd day of treatment, I don't feel grand, but I can feel it working! Hallelujah!

(2) Speaking of irony, isn't that the story of my life...you know I have to say I really don't love when people say "Oh that SUCKS" what you're going through. I know it sucks. But does it? Yes, if you asked me two days ago when I started new round of IV Leva and IV Doxy together (AM & PM) everyday, I would have said this sucks. But I've been through the beginnings of new treatment rounds SO many times that I'm beginning to actually 'handle' them with a bit of poise and even KNOW that it's OK to feel like I am going to keel over and die even in the fetal position under a blanket(as described before, we know that means the meds are working) because I WILL come out from under that blanket a few days, weeks, or months later (thank GOD it's been only days and weeks recently).

Lotus Flower: I feel good and I'm coming out of the muddy swamp!!!

The LOTUS FLOWER (the national flower of my ancestors' country ironically) is one of the most ancient and deepest symbols of our planet. The lotus flower grows in muddy poopy swamp-like water and RISES above the surface to bloom with remarkable beauty. At night the flower closes and sinks underwater, at dawn it rises and opens again.

The persistence of this flower and its ability to create beauty from what we perceive as mud has been brought to my attention by many books, friends, and spiritual teachings. In many ways, whatever our shitty muddy water is, whatever pile of perceived hell on earth we may experience from a breakup, a change, a job loss, a divorce, depression, illness, lack of love, impending death, abuse, internal demons, war, genocide, whatever it is, we all have the capacity to rise above, as nature intended, from a place of darkness to one of complete beauty and self-discovery.

Untouched by the impurity, the LOTUS flower symbolizes the purity of heart and mind despite the sludge and mud it lives in that we humans perceive as 'bad.' The lotus flower is viewed as a symbol of spiritual unfolding. The lotus has its roots in earthly mud, but as it grows upward in aspiration toward the light, its petals open out in a beautiful flower. Om Mani Padme Hum, meaning, "Hail to the Jewel in the Lotus" is the sacred mantra of the Tibetans.


Ok yes I am going to be that annoying person right now who reminds you (and I) how lucky we are to have arms and legs and a home and access to food and not have to live in a shack and walk miles to get a sip of water that might give you cholera. I have to say when people tell me that, and I am suffering in a way that words cannot describe, I want to sucker punch them in the FACE! Someone once told me, well at least you have your arms and legs, and then I told them all the symptoms of Lyme and how 4 years at least have been taken from me, my job, my career prospects, my cognitive abilities, sanity, physical ability, possessions, life, and how I've spent over $100,000 on credit cards for out of pocket medical costs and how I barely talk to most of my family b/c of this disease, and how fucked up the disease is, and then he was like, "Oh, yeah, that's bad." Thanks smartypants. But, I digress.

Back to being happy and annoying you. Yes, I am happy today so I will annoy you with my "BE GRATEFUL" motto. It's painted across my face in bright neon today. Gratitude brings abundance. It's true. Ok, I digress again.

I had a rough few weeks starting my last round of IV treatment. IV Doxy now. You know the kind where 1 night you want to die b/c it's like someone fed you 20 hits of acid (HONESTLY, I have never taken acid and have no idea what it feels like but I imagine 20 is near the overdose level and that's what it feels like). Every new IV drug brings on more herxing (see definition at the side of blog), a chemo-induced state of feeling like death for hours or days or weeks and then retreating to complete exhaustion, bouts of unexplained physical and psychological warfare on your body that you know is coming and you have gone through over and over for years as a Lyme patient, but that you just somehow cannot get used to. Years and you want the rollercoaster ride to be over....and then.....

HALLELUJAH! I wake up one day after 1 week through this Round of IV meds, feel progress. The drugs are working!!

Most of you know that I am not an advocate of Western drugs - I am much more holistic. But it is NIGHT and DAY with IV drugs. IV feels like it will kill you at first, and then wow, you, Mona, feel alive, feel that mischievous passionate love of life and happiness that emanates NOT from circumstances but from within! I feel and see Mona returning. It's like reuniting with a friend I haven't seen in 4 years.

I had 2 good days behind me. I was in the muddy sludgy trenches and just as nature says it is possible with the lotus flower, I rose above the surface of the brown water, and out come my white petals (or in this case, gold and yellow - I celebrated Halloween for the first time in FOUR years and went to a loud house party for the first time in 3 years!) It was scary, the noises and the lights and the people, I was overwhelmed, but I felt ALIVE. The Mona who loves to be crazy and laugh and well many of you know her - she made a visit that night and I actually made it through a whole party dressed up as a bee. Again, I digress. Gold petals, lotus flower, bee, you get the picture.

Then yesterday I was able to DRIVE to the store and get groceries! On my own, without feeling like a beached whale after! This is huge! I haven't done this in 3 weeks! And took myself to an appointment, and then went to the Conservatory in Golden Gate Park (my old special spot), where a beautiful white ornate building sits atop a huge field of trees, pathways, flowers, hills, and a bench always filled with about 5 drummers (mostly adorable and some toothless old men) and a didgeridoo and a little guitar player and the token hippie or two dancing in circles. I was just sitting meditating and I was drawn to the music (even though Lyme patients on IV notoriously hate noise) and as I came closer a piece of beauty was revealed to me through remembering how many times I had visited this place in the last 4 years, wondering how I got here.

Then I felt this feeling I've had many times since being ill, this feeling of acceptance, acceptance of loss of all my identities, acceptance of happiness being possible even while 'ill' and not able to do what all the other 33-year olds are doing, happiness with love in my heart, and just then (sorry to go all drum circle soul sister on you but this is my true nature as you all know, though sometimes disguised by my lawyer apparel), I saw a little baby learning to walk, and she kept falling and rolling over onto her side.

She kept coming towards me and her big blue eyes could see right through my sunglasses into my soul and she kept coming to me, and I held my hands out to motion her near. She kept falling and rolling like an adorable pudgy rolly-polly that I wanted to squeeze and kiss (but thought her grandmother would have me arrested so I didn't do that).

She kept ALMOST making it and then with the drums and music in the background and her eyes piercing my spirit, I could hear her saying (no she wasn't talking, she was hardly 1!) "Mona, see the world through my eyes, you see them. See the eyes of the world as a child, you see them. See the world the way I do. Walking, falling, rolling, music, clapping, simplicities. It's all as if for the first time. See how happy I am!"

If you are now wondering what IV drugs I was on at that moment in time, the answer is NONE. Hello, I don't infuse and drive - very dangerous. But I was on the Mona drug - the kind of endorphin that magically appears on occasion when enough Lyme has been killed off to make me think that something as simple as seeing the clouds is the most amazing and wonderful thing and I smile like a cracked out strawberry. That made no sense. Back to the story..

Now, NOT to brag (b/c really it's not anything to brag about), but little kids and babies and I have always had this really special vibe with each other, as in every one that passes by stares at me and I stare at them like we are sharing some kind of common understanding...we just gravitate towards each other and always have. It's like we're saying to each other, "Yeah these stupid adults running around in their monkey suits are buffoons. We know what real happiness is. It's having no filter and being deemed inappropriate by other well-mannered adults, laughing, seeing, and being SO excited about these things as if it were the first time we've done it."

Well, not to sound like a cliche, but some of these things ARE like new to me. I haven't had alcohol (sigh) or walked more than 40 minutes in 3.5 years. I haven't exercised or traveled outside the country or been to a concert (because of the noise) or been able to handle a baseball game or parties in 3 years! Walking fifteen minutes and getting groceries and feeling happy and able to handle noise in a restaurant and just enjoy a few hours with friends is a HUGE deal for me! Going to a Halloween party is a big deal! I pushed myself a bit, but I did it.

Nobody knows how I feel inside, as I have become a master actress at hiding my symptoms and just letting myself believe I am completely healthy. Why think I am sick? NO need. No sympathy wanted. I don't want to be pitied.


I cannot describe in words the immense happiness that literally radiates from my bones like the blinding sun on these days. These days are far and few between but they come. God, getting groceries and going to the park and taking a nap as a GOOD day - that's such a far cry from a full time attorney, athlete, friend, aunt, with a social life and all the community activities I was involved with. How can I think I will jump to that life anytime soon? I don't know - I don't worry how I'm going to get from point A to point B anymore. That's a lie, I mean I don't worry about it today and yesterday. I just have to BELIEVE it will happen.

Nothing special has happened. There weren't any amazing circumstances; it was just happiness from WITHIN. And you know, I don't know that I really ever knew that before I got sick (or appreciated it if I did feel it). My happiness depended on SO many other people, events, circumstances. I have finally learned to let go of those circumstances.

Before the last few days, I felt like I was hibernating in brown filthy mud underwater, nearly suffocating, drowning, couldn't tell my tears from the water around me and gasping for breath to feel like me. I hated life. The drugs torture your body and mind so much that you think you will NEVER be ok again. And then one day, you wake up, play some good music (MUSIC! I stopped listening to music for 3 years bc the noise was too hard on my ears), pry through that water and spread your petals and you flourish, as a beautiful happy lotus flower on land again. Land of the real people, not the underground of darkness that feels like you can never get out.

WHY did I feel good the last few days? The treatment - the IV meds - remember it's a rollercoaster. I cannot give you a formula. Today, I feel NOT so nice. But I am still happy because now my body and mind REMEMBER what it felt like to be ME. ME - SHE is under there. No matter how many months, years I spent under the brown muddy water, I can and will rise up, and one day I will be above ground FOREVER.

I write this for you, my friends, because I know how happy it is for you to see make progress. I also write it to myself, to remind myself on dark days of IV infusions that are rocking my body like a boat, that I am me underneath it all, and that I will continue to come out from the muddy water. The Lotus Flower does it. It is Mother Nature's way. So it will be!

Sidenote: why didn't anyone tell me on Halloween that those 'bee antennae' were hideous?!

Deep Inside My Soul on a Dark Summer Day

Flashback to June 2, 2009


I never thought I would watch the Bachelorette again. I loathe reality TV. I need the escape, anything to take me out of my world for just an hour. I never thought I’d wake up on a Tuesday at 3 pm and watch Full House because I was so lonely and could do nothing else including even make my own meal. I never thought after rock climbing, surfing, snowboarding, and mountain biking my whole life, that I would only be able to walk 2 blocks down the street to the bridge at the age of 31. I never thought I’d be spending my free time contesting an appeal whereby doctors have deemed be able to work full time and I am spending my precious energy that should be used on healing and resting in parsing through thousands of medical records to contest this and ‘prove’ my disability so I can get some income so I don’t have to claim bankruptcy from the $80K I have spent in medical bills.


I never thought I would forget how to spell words or get lost inside the grocery store or just put scissors in the freezer b/c I think that’s what you do. I never thought I would take 6 pills every night just to sleep when I used to sleep like a baby through alarm clocks my whole life, and definitely never thought I’d take 79 pills daily just to keep my system functioning and fight a disease that nobody knows about or believe exists, and even fewer know how to treat properly. I never thought I’d spend most of the year with my parents at their home, having them – in their late 60’s – cook for me, do my laundry, do my dishes, sometimes make my bed or cut a cucumber when I am in too much pain or too incredibly exhausted to stand, while I am 31.

I thought it would be the other way around. I thought I’d be married, engaged, have a meaningful career I love, travel, safari and backpack through Africa, climb Kilimanjaro and come home and tell family friends at holiday parties about my adventures, set up legal justice projects abroad, see parts of the world I haven’t seen, and help people in those places, be active in all the sports I love, working diligently on the Spark Board, trying to make a difference in many ways with my pro bono cases, learning, volunteering, participating, rock climbing in Lake Tahoe, skiing in Canada, mountain biking and hiking on the weekends, camping and drinking too many Pacificos, having wine & dinner and friends, hiking on the beach and getting lost, CONNECTING with the world and other humans. Instead I am with me, myself, and I all day EVERY day and, even more exhausting, my own thoughts. Try being with your thoughts and no physical outlet for 3 years – it will drive you to insanity.

I always thought I would have to make sure to give myself alone time with the incredibly busy Type A lifestyle I led, a civil rights lawyer, overachiever, general spaz, and now I have to make concerted effort to just see another human besides my parents or get out of the house more than once a week. I never thought I’d be going to Target on a Saturday for my daily outing, for my source of “fun” which is in quotation marks on purpose b/c clearly my idea and ability to handle fun has been altered. I never thought that walking ten minutes without fatigue would be immensely gratifying and a feat for me. I never thought I would pee orange. I never thought I would hallucinate and hear weird noises and voices but I do now (unless I was on drugs of course, and I am on drugs, but prescription ones not illicit ones).

I never thought I’d walk up and down my parents’ driveway in the hot summer a few times for exercise, and be too scared to leave the smooth black tar and step out into the bumpy gray street b/c I was in my nightgown. At 2 pm. Ashamed to walk onto the gray concrete street and see the construction workers stare at me like some kind of alien. I never thought I’d have 5 large binders full of medical records that I guarded with my life and organized more meticulously than any of my cases when I was a working attorney.

I never thought I would wear a plastic ring every day that my mom bought me as a silly trinket 6 years ago because I now thought it had healing power. But when you are down low, any source of faith will do. I never thought I would throw an avocado at the wall after the age of 10 from a temper tantrum, but I did last month. And I do, sometimes, when the Lyme rage is at its best (or worst, depending if you ask my parents who are there to witness it). I never thought I’d break plastic toys in the garage to get my anger out. I never thought I’d be in so much excruciating pain that I’d rather trade it for my vertigo & dizzy & crying spells.

I never thought I’d spend New Year’s Eve in my snowpants buried in snow in 5 degree weather in the backyard of my parents’ house at 3 in the morning crying hysterically until they found me outside (clearly, that was a low point and majorly induced by herxing from the treatment).

I never thought I would lose 25 lbs. after reaching my 20’s. I never thought I would drop from my healthy athletic size 6 down to a size 0 at 31. Every girls dream right? Ha! Be careful what you wish for. (And for the record, I never would wish to be a size 0). I never thought I would spend $6,000 a month on doctors and pills and supplements and acupuncture and energy healing. I’d much rather spend it on a trip to Bali.

I never thought I’d get this much free time to myself until I was retired. I never thought once-cherished noises like bird chirps and small children laughing would make me want to scream bloody murder because they sent throbbing pain through my ears. I never thought I’d hit refresh so many times in a day on my computer to see if anyone out there in cyberspace was reaching out to me.

I never thought a piece of machinery – a computer – would be my best friend, my closest ally in times of all insanity, depression, anxiety, anger, boredom, frustration, confusion, panic, in all times of happiness, reconnection with my old self that occasionally returns to me in pieces, those pieces all getting ready for the big Mona system reboot in a year or 2 or 3 whenever this hell is over if it ever is and it better damn well be. I never thought my computer would be my connection to the outside world and that I’d long for a cubicle in my old office just so I could feel like I was doing something and even had people within 20 feet of me to talk to during the day. Be careful what you wish for. I never wished for this much free time; I never wished for any of this.

The thing is I NEVER in a million years thought I’d be where I am today. Sometimes I feel like I’m in a bad bad dream. But I never wake up. I was always do it all perfectionist Mona. On the path to success and happiness...Don’t they always say oh life is not going to turn out like you plan? I always knew my life would follow a virtuous and perfect and successful plan, and it didn’t. Not only did it NOT follow this carefully crafted plan, it strayed so far in the opposite direction that it took all that I know and knew, put it in a blender, shredded it to pieces, liquefied it, and vomited it all around the kitchen walls. It turned my world upside down.

And today, I hate that plan, that master planner above that crafted this destiny for me. But on my good days when I am not so sick from treatment or the disease itself, I know with all the truth in my heart that this was my intended plan and that I needed my world to turn upside down b/c the happiness I thought I was living was not sustainable.

The turning over of my life has revealed a wonderful discovery of so much more underneath my material and physical identities that I did not know about. It revealed the coming to terms with the truth of who I am, and discovering a way of being that I cannot believe I did not know before. Spirituality, Buddhism, Eckhart Tolle, letting go of my attachments with identity, and learning this all at the tender young age of 32 (well it’s tenderly young compared to elderly Buddhist monks!). I'm no Buddhist monk, but this journey will turn me into a better person than I ever could have imagined. The Mona I wanted to be accomplishing all kinds of things and doing and making and producing and running around without stopping to breathe would not have been 1/10th the Mona that will now emerge from this transformation once my caterpillar gives birth to her butterfly. I’m still in the cocoon. But the time is coming soon.

And watch out, because when this caterpillar transforms into the butterfly, there will be GOO EVERYWHERE!

FAQ's - all your questions (well many) answered!

FAQ's
Just posted this as a permanent page at the top of the blog, but think enough people have asked me that I want to post it as a blog entry:

Because I get so many inquiries in person about what the symptoms of Lyme are and what the prognosis is (every Lyme patient gets chills down the spine being asked this question), I decided to make an FAQ dedicated to just those questions.

It's honestly frustrating for me to talk about in person (4 years into it), and exhausting. That's part of the reason I created the blog, so my friends and others could understand what symptoms I am feeling but that they cannot see. That way, they know my story; and I can try to live as much of a normal life as possible, focusing on other things in life besides Lyme....I don't want to act like a sick person, and talk about it all the time. I have to live as much of a 'normal' life as possible. Much if not most of the disease is completely invisible. Below is copied from the "My Lyme Story" page at top of my blog:

(1) WHAT ARE THE SYMPTOMS OF LYME?
The answer should really be what ISN'T a symptom? This disease manifests differently in everybody and the type of symptoms this disease creates are so widespread and honestly more hellish than anything I could ever even imagine. Here's a list of the ones that plague me (and most Lymies, yes I said Lymies):
• heart palpitations that make you feel like you are having a heart attack
• chest pain, inability to breathe or get oxygen to Lyme-infected heart and lungs
(a good portion of Lyme patients, myself included, have gone to the ER more than once for the above symptoms because it literally feels like you are having a heart attack)
• bone-crushing fatigue (as in sometimes you can barely make it to the bathroom or down the stairs); on good days I can go to the store and buy myself some stuff and maybe go for a 10-20 minute walk and do some computer work as long as I slept 10-12 hrs the night before and have a nap
• dental & jaw pain to the point you cannot eat anything cold or hard for days
• vertigo and dizziness that make you feel like the world is going up, down, swirling around, and someone gave you a bad dose of some hallucinogenic drugs and the experience never ends, sometimes the ground feels like it's moving up and down
• weakness
• fevers, chills, nightsweats (80% of the time I have one of these to a certain degree)
• endocrine dysfunction, which can cause disorders of thyroid and adrenal glands
• INSOMNIA, the kind where you take 2-3 sleeping pills per night and still only sleep 3-4 hours!
• excruciating joint, and muscle pain EVERYWHERE (to the point you cannot turn a doorknob or type a word because your wrists hurt so badly and it feels like someone is knocking a 50 lb. hammer directly onto your neck and spine)
• electric neuropathic pain that feels like you are being electrocuted
• migraines, headaches
• nausea, stomach pain, organ pain, inability to eat
• auditory and visual hallucinations
• extreme noise and light intolerance (think no music, sunglasses even at night, inability to watch TV for long periods of time)
• Rashes
• memory loss, complete and utter loss of cognitive ability (as in I put scissors in the freezer and got lost when my dad dropped me off at Whole Foods once, IN the store)
• short-term memory loss, confusion, word-finding difficulties, major visual disturbances (blurred vision, even had a herx so bad where the entire house was 'cloudy' and covered in fog and all I could see out of my eyes was a thick fog vision for 10 hours straight - scared the crap out of me),
• numbness and tingling in toes and fingers, inability to feel parts of your body at times
• depression, anxiety, weird psychological manifestations of all sorts, irrational rage (yes it's real and called "Lyme rage" wanna see my break a table after someone yells at me?)
• dizziness and lightheaded-ness, especially on standing, the spins, like a hangover x 20 but for weeks at a time
• Ringing in the ears, buzzing in the ears that makes you feel like you are hearing dolphins from thousands of miles below the sea
• Eye pain and blurred vision
• Extreme intolerance to heat or cold; especially freezing hands and feet and bum for some reason
• Shaking, tremors
• Seizures - the WORST thing ever. I've only experienced these about 2 times while on IV, and infusing too fast, and it was most likely a herx (die-off reaction) or maybe drug toxicity as my doc said since I never had these before IV, but it was TERRIFYING, couldn't speak, stuttering, couldn't hear what my mom and grandma were saying, total confusion, shaking, then my body went limp and was extremely exhausted and unable to move, crying, and limp/weak for hours after. It was like I inhabited another person's body and felt I was about to die. SO FRICKING SCARY. None since then. So now I go SLOW on all meds.
•Depersonalization, feeling like you are not present or in your body


The worst part of this disease is that your symptoms and level of ability to function can literally change by the DAY, the HOUR, even by the MINUTE. Up, down, up, down.. I was on different treatment, addressing different co-infections, and when you ignore one, another creeps up. Then you need to knock that one down. Then Lyme creeps back in. You have to keep changing the game, the drugs you use because the bacteria get smart, and figure out what works.

Then the treatment itself, like chemotherapy, makes you sicker than sick. Then you feel a day or two or even a week or month of improvement. Hallelujah!! You feel good!!! At the beach, laughing with friends. Boom, then you're bed ridden for 3 days. It makes NO sense, it is not linear, and one just has to accept this as long as you know you're generally trending upwards.

I love my parents, but even after watching me battle this disease and learning all about it, they still ask me, "what happened? you were fine just 3 hours ago!" What happened? It's called Lyme. NO RHYME OR REASON.

One minute you're standing up in Target (after browsing around for only 15 minutes) and 3 minutes later you are scooting on your ASS down the aisle at Target while people stare at you because you can no longer walk or stand up without collapsing from weakness and they think I look totally healthy (yes, this happened to me and I had to scoot to the front and page my mom in the store to come get me, it was like being 5 years old again). Then you're crying in the car and have traumatic memories of Target.

(2) WHAT IS THE PROGNOSIS? WHEN ARE YOU GOING TO BE BETTER? WILL YOU BE BETTER?
I'm sorry to sound rude, but this question makes us Lyme patients cringe, want to vomit in the mouth. You know, kind of like Dee, It's Always Sunny for those of you who watch that delightful TV program (that has seriously saved me with laughter). (Late-stage) Lyme is such an individual disease with no set protocol of treatment (there are dozens of Chinese herbs and more than 40 drugs to choose from and many different variations of symptoms in different patients that make each individual so unique that no set pattern or treatment protocol works for every person). Because of the co-infections (Bartonella, Babesia, Ehrlicia, etc.) AND the Lyme, it is basically like treating 4 full blown Lyme Diseases, and balancing treatment and symptoms of each tick-borne disease. Also, the more drugs patients rotate, the better. I have been on 5 different oral meds, and now that I'm on IV, have done IV Merrem, IV Clinda, IV Levaquin, IV Zithromax, IV Rocephin, IV Doxy, and probably will go through a couple more. After a drug has done its job, it's on to the next one. Kill the other bugs....so you see, there is no answer. The prognosis is different for EVERYONE.

No doctor can ever tell you with certainty WHEN you will be better or WHAT will make you better. If this uncertainty is frustrating to you as a friend, imagine living it. It is enough to cause you to want to give up on life sometimes. They estimate based on the thousands of patients they have treated, but we are all so different.

Symptoms come, go, good months happen, 10 steps forward, 5 steps back, etc. Chemotherapy is toxic; therefore, taking IV meds - basically the same principle behind chemotherapy - inevitably means getting sick before getting better. The darkness before the dawn. As long as my numbers are going down (which they are), and generally I'm trending upwards, that is good. I would have expected to be done by now, but my body is UNUSUALLY sensitive and so many meds that helped clear my symptoms and kill the Lyme damaged my organs temporarily and made my stomach so raw I couldn't eat for weeks. So I had to stop a lot of those good treatments. But my doctor told me it was necessary to keep my liver, pancreas, and stomach. I joke, but you can see how desperate you get to get the treatment in you. You almost want to risk anything.

Now you see why there is no straight answer to the prognosis question. I also believe a LOT of recovery has to do with mind-body-spirit and the emotional place you are in. Once you have accepted this, forgiven yourself for not being what you thought you were going to be at 33, forgiven the stupid doctors and the world and God and fate and the Universe and your family and whoever you want to blame for this situation, let go of the anger, sat through countless months and years of crying over lost life and experiences, then you start to see the light at the end of the tunnel. You start to see yourself as healthy, with Lyme as part of something you deal with, but not your defining characteristic. Soon, it will be a blip of my life and GONE. For now, it occupies a lot. But I don't think recovering from any disease completely is possible without examining and digging deep (and I mean DEEP) into the emotional baggage that is attached to and surrounds the disease process.

It took me YEARS to find people who fully recovered from Lyme Disease. I had to scour the ends of the Earth to find people who knew them. But they exist, and now run, go to grad school, work, run triathlons, have kids, travel, drink too much, and have normal lives. I have to believe I am one of them; I have to believe no matter WHAT OTHER stories I hear (and believe me there are a LOT of tragic stories, people being sick for 10 years, etc.), I have to believe that I am different. And I DO. Just some days, I need reminding.

All my friends and family tell me, "Mona, if anyone can beat this, you can" or "You have more strength than anyone I know and you WILL get through the other side" or "You are NOT like those other people who are sick. You are Mona, you're different."

My good friend Bryan emailed me the sweetest thing that made me have renewed faith in myself: "Like I told you, Mona, you are stronger than 99.8 % of the people out there. Things that would kill others are stuff you have the strength and determination to laugh at. I love you Mona and as much as it kills me to see you going through this, I know that it's turning you into a person that will be so special and capable of so much when this is all over. I know plenty of people that would've given up a long time ago. The things that I say to you about your strength and determination are not things that I would be able to say to a lot of people with the same conviction as I can say to you. If I were getting these kinds of emails from any number of other people, I would have serious concerns about the person's future" This makes me HOPEFUL. But wouldn't any good friend say that to you? I mean, AM I different? I'd like to think so, that I have what it takes to push mind over matter through this. But on days when I feel like a pile of shit sandwich caked inbetween two other shit sandwiches, I wonder if I am all that different, why am I still so sick sometimes? As Katherine - my dear friend says - I just feel so sick b/c there are so many of those damn little Lyme buggers exiting my body those days. I like that image.

...Post note....the shit sandwich days are the chemo-like days, the days when round of treatment is new and that's when it kicks ass, like it's supposed to. That means the drugs are working. I have been feeling pretty good the last week after getting over the hump of the first 2 weeks of this new treatment..and I infused last night!

Blog RESPONSES

I've received some very heartfelt blog responses via email and other means and I am incredibly touched by the people (many who I have never met, many friends of Lindsay's, my friend who lost her life to Lyme) who have reached out to me and offered love, support, and just words of inspiration...I suppose that was part of the purpose of this blog, to reach out, connect, and feel heard...thank you.

"D" wrote:
Dear Mona,

I was an acquaintance of Lindsay, and found out about her death last week, but even more sad about her long battle with Lyme. I read your blog today, and like Lindsay's it has touched me in so many ways.

Lindsay and I went to law school together, and I remember her as sweet, quiet girl.

Mona, I am currently not working but like you South Asian, a social justice minded lawyer. I have had my own tale of woes this year, but NOTHING that comes close to your pain. Ironically, Eckhart Tolle was my first intro into coming closer to my being and the last couple months I've been practicing Buddhist meditation and going to temples here in Los Angeles, where I live. I am doing a 10 day retreat at spirit rock in the bay area to further my practice and mental healing.

Unfortunately, I donated what I can give now, when I start working I'd like to give more.

You are so inspiring and I think you should get out to even a wider audience. I wanted to know if you would be comfortable if I posted your blog on my facebook page to draw more attention to the disease and potential donations. I know this is wild but its Oprah's last year, I know cliche, but I think your story, your advocacy/message should make it to a larger audience. Have you already tried? Here is a link where you can ask her for your story. If you'd like I can piggyback on your story, after you write her with your story. I'd also like to write her as someone new to information about this illness, and to ask her to feature the courage, and pain you and other survivors and those less fortunate like Lindsay have been through. You are so right, insurance companies and people need to know the prevalence and the struggle!

https://www.oprah.com/ownshow/plug_form.html?plug_id=3337311

You are in my prayers Mona, I have hope for you and your life's purpose to touch people, impact change, compassion, so much greater than most of our purpose. Yes, I am 34 and I can work, run, dance, drink with friends, but you have been given a life with so much more universal meaning and impact. Unfortunately with that has come so much pain and suffering, but I believe your journey is to continue to heal and heal others.

I hope this email and message isn't too personal. I just wanted to tell you how inspiring you are.

With love,
D

Anne J. wrote:
Hi Mona,

My name is Anne, and Lindsay K. was one of my best friends in college. In the years after I continued to think of her that way even as our lives became more and more different as she got sick. I helped her move back from Berkeley to Minneapolis and saw just a little bit of some of the horrors she faced every day from Lyme, but am realizing now that, as I'm sure you have heard countless times from your own friends, I really didn't understand the depth of the pain, not even close.

I'm writing to you because I finally read your blog entry and I'm so glad I did. It was a wonderful tribute to her and reminder to me that as Lindsay's friend, I have an obligation to be knowledgeable about Lyme and advocate for better treatment and understanding of people with Lyme. I hope so much that you keep fighting--from the spirit of your blog, I can picture what a wonderful civil rights lawyer you must have been and will be again.

I can't believe that Lindsay is gone and the more it sinks in the more emptiness I feel at her loss. There has never been anyone like her and there never will be.

You can count on my prayers and hopes for your own recovery, and if you ever want to email me, I am here.

In hope for better days,
Anne

Meira B. wrote:

Hello Mona,
I am a dear friend of both Jennie and Lindsay. My heart, much like yours, is broken.
Thank you for posting your blog. I knew that Lindsay was suffering, but I never quite grasped the scope of it. I wish you endless strength in your journey....

I have read up on Lyme disease since Lindsays death. But your blog had the most impact on me.

I saw Lindsay 2 weeks before she died. It was the best I had seen here since Jennie's death, she seemed hopeful for the future and excited about starting the stem cell research. I though she was finding her way out of the the incredible devastation that had befallen her. I can only think that she must have succumbed to a moment of Lyme's induced darkness.

From your writing I can tell you are a very vivacious person. I pray that you conquer this disease and travel to all corners of the earth....

Mona,

I can't tell you how much all of this (Jennie and Lindsay's passing, and your incredible determination ) has impacted my life. It is just a whole new outlook. So many things that once seemed important, simply are not. I could go on and on, but honestly i am not a great writer and I find it very difficult to put my myriad of thoughts on to paper (or email). Probably why I decided to be a dentist.

But I am really writing because there are 2 songs that I love to listen to when I am feeling down. They always bring me back up with renewed vigor. The songs are "Desire" and "Push" by Pharaohe Monch. Have a listen. (noteworthy: These songs are featured on a dance party mix a friend and I recently made for a party that has yet to happen......but I will let you know of the date so you can fit it in to your world wide tour)


Mona,
this may seem totally weird (but i guess with all you have been through there is no weird anymore), but i somehow feel like I know you. When I fist saw your picture on your blog I swore that I had met you before.

Anyway when things get rough, remember that there is a random stranger in Chicago rooting for you and when start your travels again make a stop in Chicago. I know this great roof top bar with amazing views of the city. We can also head up to Northern Minnesota. Jennie and Lindsay spent a lot of time there. The sky and water are so clear and the stars at night are amazing.

Love,
Meira

Joan wrote:
Dear,Dear Mona,

I have read your blog and I am so very,very touched by all that you have gone through.
I wish I had the words to tell you how much they touched me. YOU HAVE GONE THROUGH HELL!

I have always had a special feeling towards you. I remember going to see you ice skate as a young child.
I have always known you to be a"special person". Kind,intelligent,beautiful and compassionate. Who could not love you!!!!

Do Not give up hope Mona. Our God.the one God, who made this universe has a special reason for all of this. And as much hell as you have gone through is just how much JOY!! Is awaiting you.

I believe that you have been chosen to do great things with your life.
May God Bless You and hold you close in His arms. You shall have a special place in my prayers.
Joan


Sue G. wrote:
Mona, I read most of your "diary" and Mona, all I can say is you HAVE to plan to put this all in a book someday as it will be a top seller! Your ability is express yourself is overwhelming and will benefit so many who are struggling with the same issues as you. This IS a gift from God and will be used mightily if you allow it to be used. I am sorry to hear about the rocephin and as you know, had to quit also after 14 days.

Your pictures too are great--this truly is a sad but well-done blog! Stay with it, gal. Wonderful therapy for you also. Wanted to express my sympathy to you in the loss of your dear Lyme friend who is no longer there for you. Mona, I recall 3 people who were friends calling me when I was very bad and said they know someone with Lyme and of course, first question of mine was how are they doing. All three had taken their lives!!!!!!!!!!!! Now is this a friend who needs to put her "tongue in check" or not? That was so tough for me. . . cannot imagine having someone you personally know what passes. My sincere sympathy to you. God knows you can and will get through this and will replace her in your life with others.

Terri (Lindsay's mother) wrote:
Dearest Mona,

The more I look at your blog, the more amazing I find it. It is beyond incredible.....informative and yet personal... you are a such a great spokesperson for lymies. How I wish that Lindsay could have seen it. Thank you for the update. I truly feel a deep connection to you, even tho we have never met.

We have just returned from "up north" (that's what Minnesotans say). to bury Lindsay's ashes next to her sister Jennie. I threw myself on the ground and blubbered until I could cry no more. The final good-bye. I have rarely seen Lindsay's dad cry,, but he needed kleenexes too. I still cannot believe she is gone..........

Stay strong, Mona, you have been thru soo much, but I know you will win.

I want to write more, but too tired (and I don't even have lyme). Remember that Lindsay's spirit is with you and so is mine. She is with us both, and senidng her Lindsay Love down from the heavens.

Love you Mona, Maybe someday we will meet and hug, and celebrate your recovery.
Terri

Another Lyme death...can it really be?

Greenwich Village Death Ruled A Suicide:

Not to depress people further because I really would like to put positive news on here as well, but reality is hard and Lyme disease reality is really fucking harsh. It is sad, but I've been told suicide is the number one cause of death in Lyme patients, and there have been a lot this year. After my friend Lindsay's passing last month, I just heard about this Lyme suicide:

Greenwich Village Death Ruled A Suicide
http://gothamist.com/2010/10/06/me_rules_west_4th_death_was_a_suici.php

The note states: A suicide note was found in Event Planner Bryan Jacobson's apartment at 250 Mercer Street, and the Daily News reports, "In the note, Jacobson wrote that he could no longer deal with his health issues, the sources said. He suffered from Lyme disease. Investigators believe Jacobson first tried to suffocate himself, and when that didn't work, he jumped from a window about 10:45 p.m." A neighbor told the Post that Jacobson's business wasn't doing well.

What irritates me is that another link states that neighbors said Jacobsen, who planned the 2008 wedding of Raphael De Niro and Claudine DeMatos in the Bahamas, had fallen on hard times.

“He was definitely depressed. His event planning business wasn’t doing well, and that might have been part of it,” said one neighbor. It seems that he just took his life because of hard times....That may be, but knowing the extreme nature of this disease, my question is:

HELLO, what about the Lyme Disease? WHY was it skipped over like a safety pin on the road? Is so little known about the actual Lyme patient experience (the answer is yes) so that people wouldn't even imagine he would take his life because of the horrific physical and emotional suffering that accompanies it? Not to mention it strips you financially bare.

So much is known about the difficulties of living with cancer, HIV/AIDS, MS, ALS, and I think the time has come for Lyme.

If the general public was educated about Lyme, one could perhaps easily link the fact that he had fallen on hard times (possibly) because he was ill with Lyme Disease, an illness that most people know very little about and that strips you of so much more than just physical functioning, but your mind and your cognition. Every person I know with Lyme, able to work or not, faces major challenges with their illness affecting their work and day to day living.

Just food for thought. Again, AWARENESS is so key. I'm not trying to march in with Lyme colored glasses and blame Lyme for everything. I am trying to open a dialogue, which sadly, most of the medical community REFUSES to hear about.


That's where I come in.

If it means I have to scare the living shit out of people to explain this disease until something is done in this country about the state of this epidemic, so be it. If it means I have to spend the first three years when I'm back on my lawyer feet testifying in front of Congress, so be it.

I am sooo sick and tired of this disease on some days after years of this shit; last night after my infusion, I just wanted to lay on the ground and flail about and cry til someone rescued me. But it's not going to happen. Then horrible, tragic things like this occur, and it reminds me to delicately peel my teary sticky face off the ground, realize no caped superman is coming to hold me in his arms, get up, and FIGHT.

How the Documentary "Under Our Skin" Saved Nathan Land's Life

"Under Our Skin" Documentary saved Nathan Land's life....a sadly too common story about misdiagnosis for years and being told you've made up a disease in your body when you really have late-stage Lyme....how many more of these stories it will take to change the mainstream medical establishment (esp. the IDSA -Infectious Disease Society of America), I don't know....

HERE is the quick story:
http://www.underourskin.com/news/under-our-skin-saved-my-life

An excerpt from his story which I know is probably the same story with most Lyme patients:

"I also began seeing every type of doctor I could find. Neurologists, cardiologists, psychologists, a rheumatologist, a gastroenterologist, etc. I was examined by anyone and everyone I could find. The answers were always the same. “You look like a healthy strong young man. You need to go out, live your life and stop thinking you are sick. The mind can really be powerful. You should go to see a psychologist, they can help you.”

I would like to make a personal THANK YOU to Julie and Sara (my 2 lovely SF friends) for making a great contribution to Turn The Corner Foundation on my behalf, a non-profit supporting research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases. Turn The Corner Foundation was a funder of the amazing documentary, "Under Our Skin," profiled above.

Catch 22

I had to stop my new round of treatment (IV Rocephin) about 5 days ago because I had too much pancreatic and gall bladder pain. My doctor made me come in for a physical exam a few days ago (she always manage to poke my organs in ways that are ridiculously painful). "Does that hurt, Mona?" "Um, yes, it hurts when you jam your four fingers like a jackhammer under my rib cage into my liver."

Anyways, my lab tests were abnormal and my extreme nausea (looking at food made me want to barf) and stomach problems made it clear that my body was not going to tolerate the new round of IV Rocephin (despite the fact that it helped my Lyme immensely and I was doing so much better on it in just a week).


I keep running into this problem - this is now the 3rd or 4th time in the last 7 months that I've had to stop treatment and my body (mostly my organs and my stomach) will not let me take the treatment. Messing around with your organs is no small matter, and my Lyme doc knows the risks of treatment. I am unusually sensitive to everything, so of course my little body throws tantrums and my organs freak out at many meds even though they are the only thing that help kill the Lyme Disease (for me I mean - I tried herbs for 6 months but after a while, got much worse and needed the big drugs as opposed as I am to them). It's a Catch-22 that I have struggled with a lot now.

Stay on the meds, health improves! Then my organs are in excruciating pain or I have acute pancreatitis or my liver or gall bladder or are in writhing pain and I am hunched over crying from that pain. OR Get off meds, health deteriorates quickly (because the Lyme is no longer being killed and Lyme symptoms rebound quickly), and lay in bed til 4 pm all day with chills, pain, fever, and hopeless that I will never beat this disease and feel like an 80-year old woman forever.

When I first had this issue back in April (extreme organ pain and rejection of meds, and having to go off meds for a month at a time), I basically lived at the hospital - had to see tons of GI and liver specialists, and undergo tons of different tests, an endoscopy (honestly the sedation part of that procedure might have been one of the best hours of the last year - on the way home from the hospital, I kept taking pictures of myself in the car with my phone laughing like a drunkard while my Dad kept shaking his head), a barium X-ray, abdominal ultrasound, CT scan, tons of lab tests, and an MRCP (basically an MRI of your biliary ducts to see if they are clogged). They were all normal for the most part, but every hospital gown I put on and every injectable dye or substance that went into my veins or my mouth was another painful rung on this ladder towards confusion and still no answers. I had a minor pre-ulcer, and then found out I possibly had had PSC (primary sclerosing cholangitis), what can be a very serious liver disease. Of course I read online about it and IMMEDIATELY (Jo, you can relate to this one) thought I was going to die and cried for 2 days. My friend even said she would donate her liver to me. I love my friends. The Internet can be very dangerous at times, and I panicked because if I was going to die in 20 years, well, damnit, I wanted to know! Luckily, I later found out I did NOT have PSC, but it was a good lesson into DON'T GO THERE MONA UNTIL YOU HAVE TO.

Back to the current story....The catch-22 is where I am tonight. Cannot take meds and stomach and organs hurt so bad. Want to barf. Don't know why, but know cannot take this round of treatment. I feel trapped. Like I cannot win. I cannot take the meds. I cannot NOT take the meds. Either way, I feel like shit. I feel hopeless, like I will never get better. Like this is the rest of my life. And then I start freaking out. I start peering into the future wondering if this is my life. It can't be. Can it? But just ten days ago, I was feeling so much better than I had (because of the IV Rocephin), and sure enough my body rejects it and says no.

There is no question here - stopping this medication is necessary because damaging my organs is not an option. But what about my suffering in the meantime until my doctor says I can resume treatment (and try another drug, probably IV Doxy is what she told me today) next round? She has no answer for me..do all the normal detox routines that can help me feel a little better but at the end of the day I am huddled in the fetal position on a Friday night totally confused about my life and what is happening to me. Four steps forward, two steps back, four steps forward, eight steps backward, eight steps forward, 1 step backward, on and on and on it goes for years until you feel like you are in some sort of TORTURE WHEEL.

Mentally, it's unbearable. I tried to call a few friends. Nobody was answering - it's Friday night after all. Maybe I shouldn't bother them - I always feel guilty (even though I should not) about bothering friends with my problems related to Lyme. I then start thinking about Lindsay, my friend with Lyme who took her life, and wonder what would have happened if she had just picked up the phone. Then I start bawling hysterically, crying, and crouch to my knees because I cannot bear the pain of her loss or this disease or the world from a standing view. I keep asking myself why she did it, why she did it, even though I know the anguish she experienced. I am in physical and emotional pain but how could she do it...she told me she never would.

I am in the midst of a big transition and her death came as a horrible shock. I'm still grieving. I'm still angry. I'm still sad. I'm still scared as shit some days like today.

Will I ever be OK again? Dear God, I hope so.