Tuesday, December 28, 2010

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.


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.


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.

Tuesday, December 21, 2010

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.

Sunday, December 12, 2010


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.

Friday, December 3, 2010

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:

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!