Thursday, July 16, 2009


So this morning I had to call the insurance company. I went into it with the best, most positive attitude. Yesterday I'd sat down and read through my plan description for an hour, and was pleased to find that the latest round of denials (of all my prescription claims) was completely unfounded. My prescriptions are clearly covered. I was stoked up and ready to send in my appeal.

Before I can send in my official grievance, I am required to call Member Services because "usually concerns can be cleared up by just gathering more information."

That is, you call them and ask why your claim has been denied when clearly it should be covered, and some pitiable person with a lousy job tells you it's all perfectly reasonable for your claims to be denied and you are completely mistaken to think otherwise. Just one more step in the company's attempt to keep from reimbursing you.

It's all just part of the game, I've been through it many times before, and I know the poor person at the other end of phone is not out to get me, she just has a terrible job that she probably needs very badly, or she would have quit long ago.


Usually I pride myself on not losing it with this illness. Of course every now and then I do lose it-- I cry and scream and even throw things, but these occasions are rare, and getting rarer. Long ago I figured out that being angry about being sick is just a waste of energy. I'd rather enjoy all the things that are great in my life and deal with the myriad elements of sickness as best I can.

So why, two minutes into this phone call was I furious? I was shouting at this poor woman on the other end of the line, at a call center in Kansas, and I was close to tears. Tears of frustration, not just at the phone call, but for the ten years of my life lost to illness and the countless indignities I have to go through. Break out the violins!

Perhaps it was how nice and reasonable this woman sounded, like she really was a nice, nice person, the kind of person who would bring me raspberries from her garden if I lived nearby-- even while she was describing to me an entirely different set of rules and regulations that were nowhere to be found in my health care plan, and in this parallel universe where the prescription benefits administrators live none of the medicine that treats Lyme is covered, especially not the injectable kind, which of course is the kind I'm on like crazy and costs a fortune. She seemed puzzled that I didn't know about all these rules and regulations in her world, but ultimately she could do nothing. She couldn't even give me the address where I should send my appeal-- she told me to call a different number to find that. (Of course at the second number they told me to call the first again, but that's a different story.)


In the whole discussion and debate about health care and the insurance industry, the thing that makes no sense to me is how people keep using the word "system" to describe the current state of health care in our country. I just would like to say, what system??? Perhaps Medicare and Medicaid have a system, but as for the rest of it, from what I can see and what I've experienced, there is no system. There is just a horse manure everywhere you go, with a few truly good people in the midst of it, such as Dr. Ross and Carolyn Humphreys, managing to help a few of their fellow humans.

When I hung up the phone I felt terrible for yelling at that poor woman. I'd already apologized to her several times before I hung up, having realized how badly I'd behaved. The worst part of it is I should be able to call up the executives running my insurance company and scream at them for an hour. I don't know if it would be productive, but at least my anger wouldn't be misdirected.

Instead I called my Congressman's office, and told the sweet woman who answered the phone that they should be sure they were working as hard as they could to make Meaningful Health Care Reform come true, because my insurance company was making me miserable. She asked my zip code so she could chalk up my call in the day's tally, and told me how sorry she was I was having a terrible time, and then we said goodbye.

I felt a little better.


So here is my plea: Call your congressional representative.

If you are as miserable as I am with this or even if you aren't but you know me or you know someone else who goes through this stuff with the so-called system. Call and keep the pressure up so this legislature goes through.

It's not a big deal to call. They have people there whose job it is just to answer the phone when constituents call, and the best way to let them know you want change is by calling. Obama is the closest thing to a demi-god I have witnessed in my thirty-six years, but he can't do it all alone. We need to help.


Joe said...

Hi Naomi:

Insurance companies. Don't get me started :)

Sounds like my disability appeal #2. I spent a fortune seeing specialists, having special tests and reports drawn up, including a beautiful letter from my LLMD. The IDSA-moron ID doctor that does the review is of course basing his decision for denial on the discredited 2006 IDSA guidelines. Ugh. It's like trying to discuss the nature of the universe, and someone just keeps saying "the earth is flat."

For good measure, this reviewer says that I can't be disabled because I sit down at my occupation. Light duty.

It's not a good feeling to have been irritable with someone, but you do realize it's part of the illness, right? Sometimes you really don't have a choice. At least that's what I've found. It's not being pissed at missing life. It's just bugs running around a certain portion of brain that day.

Take care,

WalrusMan said...


I am also a patient of Dr Ross and I would like to compare stories. Is there a way for us to exchange email addresses without telling everyone who reads this blog?


Naomi said...

Hi Joe: Yes, I know that anger springs up so much more quickly with Lyme. It helps to keep that perspective. The Poet, on the other hand, seemed to think it was perfectly understandable that I got so upset, and said he would be pissed off, too!

And I'd be furious with your disability review board as well. Not that it does either one of us any good. Anger is such a draining emotion!

I much prefer your adorable picture of your dog.



Naomi said...

Hi WalrusMan!

Glad to know there is new reader! I'd love to compare notes on Dr. Ross. If you are willing to post an email here, I can email you from my private address. I don't know any other way to do it without compromising my anonymity.


WalrusMan said...


Fellow patient of Dr Ross here. I have Lyme and two co-infections (we think) babeesia and bartonella. I have been out of work since last year, but that was for a different reason. (I told a 14 person company CEO what he needed to hear, not what he WANTED to hear...) I am using the time to take online college courses, I have the energy to do that. My family is supporting me, I am very lucky there and I have bought into a large group insurance I have access to.

With Dr Ross, has he done anything with you and yeast?


Naomi said...

Hi Bob!

Here's what I can say about yeast:

Before Dr. Ross started any of my treatment he put me on Nystatin for yeast, then he treated me for Babesia before treating Lyme. Now I am taking Diflucan as part of my Lyme regimen, and since it also kills yeast I no longer need the Nystatin.

For years my diet has been no-sugar, no white flour, no highly processed foods, and this has helped tremendously. Yeast feeds on sugar and simple carbohydrates, so when you don't eat these foods you starve the yeast out. (If you already know this then sorry for going on about it!)

With Dr. Ross I usually don't go into too much detail about diet or naturopathic supplements, since I have a different naturopath, Amy Derksen, who specializes in Lyme. If you have naturopathic coverage with your health insurance it might be worth checking her out, although she will put you on supplements, which can get expensive over time. :(

I don't know what your experience with Ross has been with yeast, I find he is open to any questions or suggestions I have.

I'm glad you have your family supporting you. I couldn't have come this far without all my family and my boyfriend have done for me.



Dwight said...

After 10 years of dealing with this chronic illness I still have no definite diagnosis. Lyme, Lyme vaccine damage, Lupus, Babesia, some insidious combination. My doctor says I am a walking furnace of inflamation. Lately I'm showing brain damage symptoms,i.e., trouble with coordination, severe memory problems, loss of emotional control. I've developed some sort of typing dyslexia This short thing took me an hour to finish. I break into copious weeping several times a day. When I'm not crying I'm just mad all the time . I can't stand to see people see me slowly deteriorate. I used to be a positive active person but now my only topic of conversation is my own health. I've become a horrible person to be around. My mood shoots up and down like a roller coaster. The severe rheumatoid arthritis has improved but I have started falling several times a day. I'm only 58 and I would have killed myself years ago except for the pain it would cause my loved ones. Is this site the real deal? I need help, both medical advice (disguised as something else) and emotional support because I'm falling apart emotionally. I used to be a tough guy, worked carpentry and construction all my life except for a stint as a computer programmer. Now I feel like a wuss hypochodriac. I'm severely addicted to oxycontin plus I'm on about a dozen other nedications. I will start Plavix today if I can work up the energy to drive to the drugstore and not hit something on the way. Even though I know there are people who have it worse than I, I feel like the biggest loser on the planet. What is this website about? Is it just friends talking together? I need something like that if anyone can put up with my constant ugly mood and outlook on life.

Naomi said...

Hi Dwight:

You are not a hypochondriac and not a wuss! Although I am not a doctor, it sounds to me like you do have Lyme disease. I have felt exactly the way you feel many times with this illness. It gets into your brain, your thoughts, your emotions. The pain and the exhaustion are enough to wear anyone down.

I do not know where you are writing from or how long you've been sick, or how long you've been on treatment. If you feel confident that your doctor understands Lyme disease well, then stick with him and have confidence he will pull you through. It has taken me three years of treatment to go from zero to 80%, which is where I am now. Before that I went without a diagnosis for seven years, barely able to get out of bed.

I can now go running, ride my bike all over Seattle, and I am very happy. But it takes a long time to see improvements with this illness, so be strong and be patient. You are not alone.

Please write back if you need more support

Naomi said...

Dwight, are you out there?

Looking back over comments on the blog, since I may use them in a writing project, I saw this comment from you. I hope you are doing better than you were last year. If you have kept up with the blog, you might see my MD has diagnosed me with genetic liver issues, connected to Lyme and other issues and this might be something you can look into. There are medications that can help with this. I have just started them.

I am thinking of you and hope you are finding our way through this jungle.