Don't eat too many fortune cookies

Per your request, dear readers, I will provide some clarification about how all these various and sundry medical issues intertwine. Whenever I talk with people about my current medical\mental health, an image of a growing grapevine filmed at high speed comes to mind. All those little tendrils, reaching out for the sun and curling up and over their grape stakes and over one another. In my body, those tendrils seem to be attempting a death grip on my autoimmune system.

So, we start with the diabetes. Type 1, as I have previously mentioned. I’ve been “officially” diagnosed for over 27 years. I have an insulin pump and check my blood glucose levels whenever I eat something.

Then there is the Hashimoto’s Disease. The definition, as provided by the Mayo Clinic, say this: “the immune system attacks the thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism)”.

I take a medication for this and the drug side effects are minimal, if any

When I was in college, I was given blood pressure medication as a follow up to a very severe and misdiagnosed kidney infection.  Stupid college kids! What do they know about following up with prescriptions? Okay, they should know and I generally did but somehow I didn’t understand that this was now a life-long blood pressure issue so I took the medication off and on for several years. So, now we add high blood pressure. More meds.

High blood pressure issues, along with the Type 1 diabetes cause stress to the kidneys. That stress turns into Chronic Kidney Disease (CKD). Our friends at Google Health share this information:

“Chronic kidney disease leads to a buildup of fluid and waste products in the body. This condition affects most body systems and functions, including red blood cell production, blood pressure control, and vitamin D and bone health“.

There are six stages to CKD. I’m at Stage 4. For more information about the stages, check out the National Kidney Foundation website.

People who suffer from CKD often develop a condition known as secondary hypoparathyroidism. The following description provided by Nephrology Channel:

“With the loss of kidney function, phosphate accumulates in the blood. Excess phosphate in the blood reduces levels of blood calcium, and low blood calcium levels trigger the parathyroid gland (located in the neck) to release more parathyroid hormone (PTH). PTH then dissolves bone tissue to release stored calcium and raise the level of calcium in the blood. This chronic cycle of events is called secondary hyperthyroidism.”

Remember that broken foot I mentioned? Yeah, its lack of healing is related to this condition. There are a couple of different medications involved with this condition, as well as vitamins and supplements.

Are you still with me? Thrilling reading I know, but pertinent to story. I promise.

So, we have covered Type 1 diabetes, Hashimoto’s Disease, CKD and Secondary Hypoparathyroidism. What could possibly be left? A bunch of other things but these are our main players at the moment. Onward to the cause for being on disability…

Waayyy back in one of the first blog posts, I mentioned that I had been working a lot and then finally collapsed. What did me in was the muscle and joint pain I was experiencing. At first, the ER doctors thought I might have Lupus. Dr. Olive, the endocrinologist ruled that out. Dr. James, my first rheumatologist figured out it was a bad reaction\side effect to one of the medications I was taking. We switched it out and things got much better. And then they got worse.

I was still in significant pain and while the systemic inflammation had decreased, it was still present. I tried a strict gluten free diet, they two different meds, a lot of physical therapy (which I still do) and nothing made a difference.

While at an appointment with Dr. James, he asked me to stretch my foot. I stretched the foot and my planter fascia tendon snapped. It’s hard to walk out of a doctor’s appt. when you can’t walk. I immediately chose a new rheumatologist.  

The inflammation continued to flummox my entire team of medical professionals. Meanwhile, my CKD was rapidly getting worse. More tests, more specialists. Not much progress.

And here comes what we now believe is the key to these many issues: In March of 2008, I had Lap Band surgery. I had high hopes. My body did not agree. I lost ten pounds. That was it. I then started having complications with eating and stomach acid. I’ll spare you the details but in June 2010, I went to see a gastric surgeon about removing the band and having gastric bypass.

Why the weight obsession? We have all heard about the benefits of being at a certain body mass index and with my health issues, it was even more crucial. By the time I saw the surgeon, it was anticipated that I would need a kidney transplant in five to six years. Transplants go a lot better if you aren’t overweight. In fact, most people cannot receive a transplant if they have a BMI of over 35. More on that another day. 

When I met with the surgeon, I told him about everything that was going on and why I wanted the surgery. The first thing he said to me was “It sounds like your body is rejecting the lap band. Perhaps you are having an allergic reaction to it”. Everybody on my medical team was quickly in agreement. We scheduled the surgery because I knew it was all covered by my health insurance plan.

And then Husband was recruited to work at another company.

I can’t believe I didn’t think to have him ask about the medical plan but, such is life. Everything else about the company was amazing. Fantastic opportunity, fantastic promotion, at a fantastic company. I encouraged him to take it and he did.

When the surgeon’s office called to check on the surgery coverage with the new plan, we found out that they didn’t cover any weight loss related treatment, regardless of medical necessity.  I thought they couldn’t possibly be serious and yet here we are, five months later and still no surgery.

All of this distilled down means the following: The ongoing allergic reaction to the lap band is putting a tremendous amount of extra stress on my system. It is taxing my organs, muscles and bone structure. All my previously diagnosed conditions began to become more severe and here we sit, still fighting with the insurance company.

Sometimes, life hands you lemons and forgets to tell you where to find the sugar to make that proverbial lemonade. I’m turning over boxes and banging heads together to find that sugar but when I do, it is going to make the best tasting beverage I’ve ever had.

Forgive your enemies, but never forget them

My darling boy will eat almost anything. He is rather great that way, if I do say so myself. Gnocchi, carrots, kung pao chicken, broccoli, brown rice, calamari, salmon - there isn’t much he won’t eat, let alone try. While this is great for us as parents, he didn’t seem to think it was so great in preschool. Nearly  every day in his final year of preschool, he’d come home with a tale of some friend who was now allergic to dairy or soy, red food dye or peanuts. Several of our Muslim and Jewish friends don’t eat pork and since Husband is Hindu, he rarely, if ever, eats meat.  

Darling boy felt very left out of all this “speciallyist” as he called it and decided he really must be allergic to something too. Although he never officially declared his food allergy, there was a time when he refused to eat anything red – especially if he had seen it on Husband’s plate. If it had been on Husband’s plate, that meant it was spicy and darling boy apparently decided he was allergic to anything spicy.

He’s since grown out of this phase and while not a huge fan of change, he does approach life as an adventure and is generally willing to head into new activities with a sense of enthusiasm. His only hard and fast rule is that he wants to get places quickly and he wants to get there without an airplane (this could have something to do with the fact that the first time we took him to India, it took us almost 32 hours to get there). He is just sure he can figure out a way to make that happen. His unwavering belief that if he can imagine it, he can do is one of his most endearing traits. If he had a motto, I’d say it was “Physics be damned!”  At the end of our first trip to India, he just could not understand why we couldn’t live in India, and have his US based Grandma and Grandpa, aunt and uncle, and several friends come be with us on weekends. He had loved the month we spent with his Indian Grandparents, aunts and uncles and three cousins. They had showered him with love and he wanted to stay. More importantly, since US Grandma and Grandpa “didn’t have to work anymore”, they could come to India anytime they wanted to see him. He thought they should want to come at least once a week.  In his mind, it was the grown-ups who couldn’t figure out how to make this work. He had his plan and he was sticking to it.

This is the point where I will draw my analogy to health insurance. You knew I’d get to it eventually, didn’t you? But I’ll start with insurance appeal information first. On Thursday, I received a letter from my health insurance company that provided the outcome of my appeals hearing from Monday. It took them three pages to say it but essentially, the message was “Sorry kid, your policy doesn’t cover you. We can’t do anything about it. Tough luck. You can pay for the treatment if you want to but you won’t be covered if anything goes wrong.”  

Anger is inadequate to describe my sentiments upon reading that letter. However, the complexity of my emotions would fill several pages and none of us has the time or inclination to read all that. The lack of control I felt over my own life at that moment was truly overwhelming. Also at that moment, a sort of nauseating realization hit me - they don’t care if I die. Worse yet, I can understand why they don’t.

Health insurance is just that – insurance against ill health.  Any kind of insurance – home, boat, car, life – you can hedge your bet and work towards never having to use your insurance. You can keep your home well maintained, you can keep your boat clean and well cared for, you can keep your car in good running order and you can keep your life by avoiding risky or stupid behavior. Insurance is meant to cover those times when there is an accident, when there really wasn’t anything you could have done to prevent the situation. One could argue that in a certain percentage of people, you could hedge your bet against ever needing your health insurance. Don’t smoke, get lots of exercise, limit your stress, etc. But your health insurance is there if an accident occurs – you break your leg playing soccer, you cut your hand opening a bottle of wine, you hurt your back raking leaves. When you are just covering for the accidents, this system works pretty well.

But what happens when there is a catastrophe? Insurance companies don’t do catastrophe. How many homeowners’ insurance firms went bankrupt trying to cover homeowner losses from the Northridge, CA Earthquake in 1994 or the storm related damage of Hurricanes Andrew, Rita or Katrina? The inevitable result is that most homeowners in California now find it extremely difficult to get earthquake insurance. New Orleans residents, years after their disastrous storms are still fighting with their insurance companies to get the coverage they paid for.  Personally, I think insurance companies really need to set up their headquarters on the Las Vegas strip. It would make for a very visible reminder of what insurance really is – legalized gambling. Casino, insurance company – the odds are the same because the house always wins and they’ll never play when the odds aren’t in their favor.

And so it goes with health insurance. If it were up to the health insurance industry, I’d never, ever, ever be granted an insurance policy. And for their business model, that is reasonable – I completely screw up their cost\benefit ratio. They would need to have many, many healthy people who never use their insurance to make up for having one of me in their system. Is it fair that those other people pay for me? Not really. However, is it fair for me to have spend nearly $8500 a month to care for a body that didn't want to work when I was only ten years old – especially given that I have little to no control over those monthly costs?

This is where my darling boy and I are similar. The emotional, humanist side of me says that the health insurance company just needs to understand that this is about my LIFE. Pay for the surgery already, damn it! Allow me the luxury of thinking that I am worth saving. Let me get on with living! From this standpoint, I would argue that the cost for the surgery is minimal compared to the contribution I can make to society if I can go back to being productive in some way. Although incalculable in business dollars, the societal impact is immeasurably greater.   

The rational capitalist side of me is like the grownups telling my young son that his plan to stay and have his family with him wasn’t possible.  A sensible person would accept that the surgery will never be paid. And even if it were paid for, there could be complications, problems or issues that would require yet more money spent on a previously unsupported policy.  One person’s medical care costs might be higher by not granting the surgery, that person’s life might even be ended through a lack of treatment, or worse yet, the patient’s family might file a lawsuit.  However, the out of pocket costs of these potential scenarios is far less than the real possibility of having to grant exceptions to future health insurance users. The better business decision is not to pay for anything at all.

Darling boy’s plan for staying in India didn’t come to fruition. He was disappointed but as always, he immediately started drawing up a new plan, even before the plane had taken off. I’m not giving up either. While it might not be rational to expect a business to accept that my life is valuable enough to save, it is important enough to me to keep trying yet another plan.

Everything will now come your way

I’m sick. Yes, I know you already knew that but its cold and flu season and I am even less immune to these nasty bugs than the general populous. I’m coughing, congested and sounding pathetic all of which will hopefully impress the decision panel at the health insurance company. As many of you know, it was Decision Day (aka The Showdown) with the medical review panel at my oh-so-helpful insurance company today. And to be honest, I have no idea how it went.

It’s taken over four months to get to this point. According to the company’s handy dandy website, this so called “expedited” appeals process should have taken less than a month. Ha! I have project managed the heck out of this appeals process and my physicians are rather amazed I’ve been able to get it to go this quickly.

I didn’t sleep well last night. I went and did a longer session with my physician therapist this morning just so I could try focusing on something else. My endochronolgist called this morning to verify that she had the right phone number to call into and we quickly reviewed strategy. At high noon, Husband was by my side when the call was made (and dealing with a dying water heater - but that’s a story for tomorrow).

It started out like any other professional business call I’ve been on. You receive a conference call in number and a passcode to access the planned called. Once you’ve dialed in, the conference calling system asks you to identify yourself to the group and then you sit and wait until the calls “host” activates the call. When I called in at precisely noon pacific standard time, there were already four people waiting on the call. My butterflies went into high gear.

Several weeks ago, I had to get very pushy with the organizer of this meeting to ensure that my physician would be allowed to speak on my behalf. They claimed it would be difficult to reach her, they had to get something scheduled right away and that they wouldn’t have time to wait for her to call them back. If I wanted her to participate, I would have to figure out how to get her there. As all good project managers know, when the going gets tough, treat the tough like kindergartners.

I walked the organizer through all the different phone numbers she could use to get a hold of Dr. Olive, I laid out how to walk through her phone system. I told her exactly who to ask for, what to say and how best to get an immediate response. Most importantly, I reminded the organizer that she\they would be in violation of state mandated guidelines that were posted on THEIR website, if she didn’t get the meeting scheduled that afternoon. Amazingly, she got it all put together.

But back to the phone call… The organizer asked everyone to introduce themselves. There was one doctor, two nurses, the organizer, Dr. Olive and myself. The organizer then turned the call over to Dr. Olive by saying “Well, go ahead…”

The intent behind this call it to get my surgery paid for. Of course, that requires Dr. Olive to make me sound as sick as I really am.  She walked through the list of every issues, its impacts and its ongoing effect on my health. It is amazingly painful to hear. Diabetics, both Type 1 and Type 2 are told, almost from the beginning of their treatment that if they’d just take care of themselves, they’d be fine. Listening to all that is wrong with me sounds like a long litany of failures on my part. Dr. Olive doesn’t treat me that way but it hits pretty hard none the less.

Once Dr. Olive was done speaking, the organizer asked the panel if there were any questions. The doctor on the call asked if I had anything to say. This was the part I was dreading. I have so much to say, I am so exceptionally angry and I didn’t want to be unprofessional and start sobbing like an idiot. I walked through the length of my condition, they quality of care I had received until I met Dr. Olive over a decade ago and shared the lengths I had gone to in order to find the team of medical professionals I work with now. I reiterated my commitment to my own health and stated categorically that I would answer any possible question they had.

At first, it seemed like no one was going to ask anything. Finally the organizer asked each panel member individually if there were any questions. One nurse did ask me if my lap band surgery had previously been approved by this insurance company. I walked them all through my past situation – the incredible health insurance with Husbands other company, the recruiting process his new firm went through to get him to work for them, and all the ensuing difficulties I’d faced once Husband started with the new company. I also stated that if this appeal was not voted in my favor that we would be involving Husband’s HR department, we would be pushing for a final and extraordinary appeal (their words, not mine) and have an attorney familiar with the case ready to work with us if necessary. I also stated that my husband in considering new employment opportunities, at a significant cost to his career, in order to find better health coverage for our family. Unfortunately, these are all true statements.  Dr. Olive took an additional moment to add up the additional costs the health insurance company had spent to date and that if the surgery was not performed, the potential costs to them for my care going forward.

No one had anything else to say. When I asked the organizer when I would hear about the decision (I’ve been quoted everything from 180 days to 30 days to a week), the organizer stated that they would send out their decision to me by registered mail on Wednesday.  

The organizer announced that they would then terminate the call and they would  discuss the information. I hung up my phone and promptly fell apart.

Husband swears to me that I sounded professional, well organized, educated and thoroughly business-like. I’m glad because I was really afraid that I would come off sounding as angry and desperate as I feel.

I know health insurance is a business. Like all business, it needs to make a profit and there are lines and treatment policies that must be implemented and followed in order for it to be a profitable and investment-worthy business. I just wish that my life wasn’t the commodity on exchange.