(What I thought was my Last) IV treatment and a True Friend

Hi all, I am almost a year overdue on a blog post, YIKES!! I was either feeling too crappy to post or feeling well enough to be out doing things. A HUGE update will be coming soon! But for now...today's news...


Definition of a true friend: my dear friend, Yael. She has rekindled the light inside me when it has gone out (many times), she threw a massive fundraiser for my medical bills while she was 8 months pregnant AND working, and she just happens to pop in doctor's office while I'm doing my IV treatment where we share laughs and smiles @ the many blessings 2012 has brought. I love you Yael!

Fundraiser Link

I want to thank my incredible friends, especially Yael Dahan Marmar, for putting together this amazing fundraiser for me: MONAPALOOZA on Thursday, May 12th at 111 Minna in San Francisco 5-9:30 pm. Thank you and hope to see you there. Part of proceeds will go to CA Lyme Disease Association as well. EVENT LINK: http://www.brownpapertickets.com/event/166958

It's been a while since I have updated the blog; it's been down again then up a little, bit of a rollercoaster...more soon.

Some inspiration quickies

These words have so much meaning in my life now...even if they don't have meaning in yours, read them and hold them in a place in your heart as maybe one day they will have meaning when you least expect it.

"Misfortune can force you into doing things you should be doing anyway. Lessons come from adversity. Anything can happen to anyone...You can find a new lease on life - more meaning than you thought possible in simple things... Let go. Live in the moment. Go forward." ~Christopher Reeve.

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise. When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Option #3: sob hysterically on the floor, hide under your bed, break a table in anger at the word, lock yourself to oh say..6 seasons straight of The OC or Gossip Girl via Netflix and ignore everyone near you and only have excitement for the trashy tv show that is at that point the only thing that is getting you out of bed in the morning. When it's that bad, and oh I've been there for many years off and on, just keep on keepin' on. Keep going. There is a light, I PROMISE. I didn't believe it many times, but then that was all I had to hold onto - BELIEVING.

I was in that stage for at least 6 months last year, and I am out of it now! There is nothing wrong with being in that place - we are all human and need to express anger, sadness, crushing hopelessness, sense of loss, and numb ourselves to the magnificent pain life can sometimes deliver with the soothing narcotic of mindless television. Better to engulf ourselves in others' torrid lives than face the reality of our own....TEMPORARILY, of course. When it's that bad, give yourself permission to feel it. We cannot be Polyanna every second of the day. I remember a certain someone telling me if I just looked at everything with a better outlook, I would probably be much healthier. Easier said than done, especially when you feel like you are dying and 33 and living with your parents attached to an IV pole and hopelessness like it's a drug. I wanted to throw cheese at his face. But I did not. Instead, I went downstairs, curled up in my leopard-print snuggie, put in 4 hours of "The O.C." and projected my sadness into Marissa Cooper's identity. Yes, sometimes I thought I was her, the broken, sad, young girl. I finished the O.C. and now I'm back in San Francisco and happy and on my way to better health every day....

Honor yourself and where you are, and you will BLOOM.

~Your friendly butterfly-in-the-making, Mona

I hate Blue Shield!!!!!!!!!!!!!!!

Alright, it's 2 am, I am fucking exhausted and I fucking hate Blue Shield of California (and every other insurance company for solidarity sake for my other Lyme friends' battles with them). There I said it!!

I was trying to be all zen like (well, sometimes) for the last oh, 3 years, fighting tooth and nail with health insurance companies (utilizing all my energy and strength) to hold them accountable for paying my hundreds of thousands of dollars of medical bills, fighting with long term disability insurance companies trying to get them to pay me what I paid into the system, now fighting with state disability agencies...I mean does it ever fucking end!????? I thought it had come to an end when CBS kindly decided to expose Blue Shield in November in a newspiece on me. But I am still hemorrhaging money. For what? MEDICAL TREATMENT THAT IS GETTING ME BETTER THAT I AM LEGALLY AND MORALLY ENTITLED TO!!

I just unloaded about 82 separate legal files today handling different aspects of JUST my medical care, health insurance, disability, etc. I am lucky to be equipped a J.D. and to have numerous lawyer friends to help me with my numerous legal questions, and even had CBS do a piece on me and STILL, I am fighting these A$%HOLES tooth and nail til the wee hours of the morning because I refuse to lay down while they try to stick their bullshit "American health insurance screws over every sick patient in America" on me. I SHOULD be in bed. I SHOULD be resting. I SHOULD be drinking water and taking my vitamins and supplements and eating healthy. I usually do, but fighting these people has become so intense I cannot even do that. I just sit here exhausted and yet POSSESSED to fight these people.

I just finished a 2 hour IV infusion after going trying to organize these 82 medical files today and having a near mental breakdown. I am now far past mental and physical exhaustion. I need to get someone to help me; I cannot fucking organize these piles alone. It's 2 am. I need to be asleep.

After Blue Shield apparently came to an 'agreement' with the state agency that investigated them (the Department of Managed Health Care), I am now told by Blue Shield that NONE of my IV meds (at $3-4K per month) are covered after December 24, 2010 (they only covered the meds for about 40 days). The reimbursement they provided for previous payments I made out of pocket were COMPLETELY inadequate: one example was $17 paid to me for a $2,000 claim - that was for 4 days of IV supplies and meds. This, even though they led me astray me for 8 months in my attempt to find a participating provider to supply my meds. It's almost 1 YEAR to the date that I got my picc line in and this bullshit still isn't settled.

And I am now to the point where I am at least able to handle (well that's questionable) calling these people and opening the 5-10 letters and EOBs (explanation of benefits) per DAY I get from Blue Fucking Shield. I just got another one from a "Senior Regulatory Coordinator" with factual inaccuracies. I've written a legal letter numerous times by mail, email, and fax and sent it every Tom, Dick, and Jane at Blue Shield and every state agency outlining STEP by STEP the timeline of events from March 2010 until present and they STILL can't fucking get it right!??!?!

Sorry to you f-bomb haters who think I am a moral degenerate for swearing so much but I'd like to see normal people deal with this disease, the controversy, the frickin' catheter that lives up inside your heart for almost a year, and THEN deal with 72 legal files of medical bullshit (and this is only 1 of my bins; I have more!). This is ridiculous. REDUNKULOUS. I am fed up. F-bombs are warranted and if you I am trying to move on with my life, trying to don't believe it, read this report that says swearing eases pain: "Why Swearing Helps Ease Pain," http://www.time.com/time/health/article/0,8599,1910691,00.html. Thank you, TIME Magazine, for making it ok for me to fucking swear!! It feels so much better! I'd rather be resting and getting better so I can start working EVENTUALLY but Blue Shield and the government and another unnamed long term disability insurer seem to want to thwart my efforts to return as 150% Mona. Well guess what, assholes!??? I won't let it happen!!!

Yes I am going to stay up past my bedtime when I should be sleeping and fight you bastards with all my might. And you are coming down. I'm not giving up. I'm getting my $100,000 or $200,000 back and I'm going to get it back for a whole bunch of other chronically ill patients in the future.

Ironically, I came across this organization called "Insure the Uninsured" here in California, and found a lawyer working on their policy in Sacramento...though I said I didn't want to be involved in health care reform and policy and law, I am finding I know way too much about it and might gravitate towards that path when I can work again.

For now, I think I have the right to vent for myself and for all those others who are too fucking tired to vent and are properly in bed sleeping at 2 am for oh the 300th day in the last 2 years! This is for you, Lyme masses, and anyone else fighting any other illness and bogus health insurance company whose sole job is to pad their CEO's shoes with solid gold and shit on sick people.

Scene from 40-year Old Virgin above where Steve Carell's character swears profusely to diminish the severe pain experienced by waxing his entire body.

That's what health insurance companies are, a bunch of evil back waxers. Well if I were a male, they would be a bunch of evil painful body waxers. I am making no sense and exhausted. I wish I could just say, I've done my best and go to bed. But I can't. I have to keep going. Evil waxers. I may have to delete this post in the morning after I read it while coherent and undrugged.

RAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAWWWWWWWR!

The Obligatory New Year's Post

First, Happy New Year. Second, since this is my first blog, I think a New Year's post is quite expected. I was planning on skipping it altogether. For though most Lyme patients' New Year posts can be found recapping the difficulties of the disease while simultaneously uncovering the small gifts we have been given through this journey, I was not ready to go there. Until now (a couple weeks after Jan 1).

Since I have been sick off and on since late 2005, and was diagnosed with Lyme in 2008, I'm kind of over hearing "this is your year, Mona. I can feel it." Yeah, I felt it at the end of 2008, 4 months into treatment. Nope...didn't feel anything at the end of 2008, oh other than the bitter cold pile of snow stuck against my back while lying flat in the snow in my parents' backyard at 3 am crying hysterically waiting for my parents to come home from a New Year's Eve party. Now that New Year's I will never forget. Those were some dark times.

2009 would be my year of FULL recovery! Oh but then December 2009 rolled around and I was back in Michigan AGAIN, though this time I had my 3rd date with my to-be-boyfriend. It was wonderful to get dressed up and go to a nice dinner but I was so ill that day I barely made it to the date in one piece, though of course I did a marvelous job hiding this. I almost vomited the fancy lamb dinner he bought me. And I had vertigo the entire night. But, I made it through without throwing up on my date or severely embarrassing myself, and at least I was not alone in my parents' yard in the snow crying! I was happy...So yes, then I heard again from my friends, "2010 is going to be your year, Mona. I know it!"

Well 2010 just passed. I will say I have come a loooong way from the girl in the snowpants in the backyard, but I wasn't 100% healthy. December 31, 2010 was just a few weeks ago and I'm still not working, exercising, or 100% Mona again. Of course I've made great progress, with PAINFUL ups and downs, plaguing me like a never-ending rollercoaster. You'd think the rollercoaster would get easier, sometimes it does, sometimes you're knocked out for 2 weeks and think your going to just wither away and die. But then you get back up again, and boom, you resume some sense of who you were before you dipped down that steep hill on the Matterhorn (you know the rollercoaster).

So now you can see why I was hesitant to say "Happy New Year, this is my year, I know it!" but you know what, I DO know it. I didn't know it January 1st but I KNOW it now, January 11, 2011. So it's my year. I feel it so strongly like I've never felt anything before. I think the word they use to describe that is HOPE or PERSEVERANCE. Together, it makes for a wonderful start to 2011.

And I can snowboard next year! Dr. G (my Lyme specialist) told me this. I had a 1 hour monthly check up with her and after our session, I ran back to knock on her office door, interrupting her sacred lunch time, and asked flat out, "Do you think I'll be able to snowboard in a year?" She answered "Yes, not this year, but next year."

"WHAT!??? Really!!??" I was so excited I couldnt stop smiling.

A sidenote: Dr. G almost NEVER gives a categorical answer - YES or NO - when you ask questions like this. When will I be able to stop treatment? When will I be better? When will I be able to go back to work? There is NEVER a definitive answer to this because there is no way of knowing; every patient is SO different. However, I usually ask, "is it possibly I can go back to working part-time in 6-9 months?" that kind of thing, and she can say, "yes it's likely." Never has she ever said flat out YES to ANY of my questions of what I could do.

(Had someone told me with certainty back in 2007 when I was mysteriously ill (before my Lyme diagnosis) that it would take FIVE years for me to be able to exercise and SNOWBOARD again (or mountain bike, surf, or rock climb for that matter), I'm pretty sure I would have run to Golden Gate Bridge and tried to jump off. The outdoors/sports is my life. But when hope keeps carrying you from year to year, 4 years have gone by and I'm still here...)

So this gave me great hope. In the end, it doesn't matter what ANYONE tells you - your doctor, your family, your friends, your healers, your acupuncturists, it only matters what YOU tell YOURSELF. And as I have learned to reweave my story and truly BELIEVE in getting better, and not characterize my identity as a "Lyme patient" though I sometimes refer to that term as I did above, I am NOT a Lyme patient. And what my friends and family and healers have taught me is that I AM not this disease. YES, I will advocate for late-stage Lyme patients forever. YES, I will educate others about it and be vigilant about it so they can prevent it. YES, I will use my law degree in a major way to advocate for adequate treatment of this disease, insurance coverage, and disability coverage. YES, I will be testifying before medical boards and Congress until things change. YES, I will take pro bono cases for sick Lyme patients (or other chronically ill people) who cannot afford legal counsel. BUT, that does NOT make me the POSTER child for the disease.

Identifying myself as the poster child for late-stage Lyme makes me feel more sick. And I find myself more and more not thinking of myself as a Lyme patient, but as MONA, real MONA, who happens to be dealing with Lyme. And that mindset (which believe me is MUCH easier to accomplish when you are feeling well and not like death) has propelled me, I believe, to new heights of health and happiness. I feel so free, amazing, I am FINALLY living on my own for the first time in 15 months... More on this in the next post...

But for now, I feel awakened, alive, blessed, as my friend Yael (and Bryan) said, "You will look back on this whole experience as a complete gift." Of course I will. I can do that already (on many days, not all)!! A blessing in disguise...as the blog is aptly named about my metamorphosis, literally. The disease was just the vehicle in which my mind, body, and soul would transform...slowly into that butterfly I keep dreaming of.

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.