An unexpected relationship will become permanent

Party time faithful readers! I’ve got six little boys at my house running high on pizza, root beer and cupcakes. To celebrate his tenth birthday, my darling boy chose to have a slumber party and watch Ghostbusters 1 & 2 with his friends. Both Husband and I have been laughing and commenting to each other as we eavesdrop on “man talk” as the boys call it. They talked throughout dinner, while putting on their pajamas and while their settling into their sleeping bags to watch movies. They talk and bicker and giggle in a way I never thought I would hear from a group of ten year old boys. As I write, I am "supervising" the controlled chaos of a pillow fight. There are so many oxymoronic statements in that last sentence they aren’t even worth counting. However, they are things I dreamed of for a long time.

I was ready to have kids when I was 25. Some people, especially those who've known me since childhood could easily argue that I have been ready since I was about 8. My dolls and bears were much loved, well cared for, fabulously dressed and if they been anything other than inanimate objects, would surely felt completely smothered. Suffice it to say, I was ready for the real thing. A few months after my 31^st birthday, Husband brought darling boy into my life when said boy was three years old. I’m the only mother he knows and very, very selfishly, I’m glad about that.

Not many people would guess that we aren’t genetically linked. We have the same big rosy cheeks. His voice projects as well, if not better, than mine and he is kind and compassionate in all the ways I hope myself to be. And speaking of genetics, he is of both European and East Indian decent so he certainly looks like he belongs to both Husband and me. Our family makeup is a bit like my illness – it looks completely normal on the outside but inside, it is a bit more complex.

Darling boy’s birthday parties became my domain when he turned 4. It has been a lot of fun to plan and even more fun to attend each of these events. We’ve had big family parties, cowboy campouts, fire station extravaganzas and adventures to an 19^th century style working farm. I've gone to some long lengths to "be there" for each year's celebration. Two years ago, I was in Boston for work just days before both his actual birthday and party. I’d been in Boston for a week already and had to be there for another week’s worth of work. 16 hours before darling boys party was supposed to start I flew home to Seattle. Less than 48 hours later, I was back on a plane to Boston. I didn't get much sleep but I will never forget being part of that party. I am now fully cognizant of how ludicrous that kind of whirlwind travel sounds but I will never regret that I did it.


For this year’s birthday party, I decided to buy the pizza and cupcakes. We had party favors but they were water bottles with their name on it so nobody needed more than one cup and they could find themselves.  I’ve added to my local landfill with a mountain of paper plates and hundreds of napkins and the helium balloons and streamers were put up by Husband and darling boy. I reserved my energy for dishing up pizza and sitting with the boys (under the guise of reading my book) while they giggled themselves into dreamland. It was definitely a different kind of party planning process and a more low key event than we've had previously however the important things were still the same - the confirmation from darling boy that he had fun and that he loves me.  

You've got what it takes but it'll take everything you've got

Have you searched for a chronic illness blog lately? Here I thought I was so unique and individual but when I did a Google search today, I came up with 356,798 using the key words “chronic illness blog”. Yikes! That’s a lot of sick people. So much so, that you can even purchase an “Ask me about my illness” or a “Don’t look sick, do I?” T-shirt. I felt so out of the loop. After taking a few minutes to feel sorry for myself in the face of a seemingly significant lack of creativity, I did spot a difference between my writing and much of what is out there in the chronic illness blogosphere.

Most chronic illness blogs are designed to:

1.       Help people who are newly diagnosed with a chronic condition

2.      Help people manage an illness developed after adolescence

3.      Support for parents of children with a chronic illness

So what happens when that child becomes an adult? And then that adult has not only a chronic illness but other health issues as well. Why had I not realized the situation I was in? Because two-thirds of my life has been lived with “just” being a Type 1 diabetic. Prescriptions, injections, numerous physicians have been such a part of my life that I’ve never realize it was something both outside of the norm and therefore worthy of making a statement. It wasn’t until I couldn’t function like everyone else that I realized something was different.

An example of something routine for me but realize is not for everyone else:

Before I eat dinner, I check my blood glucose level. Based on what that number is and the number of carbohydrates I will be consuming in that meal, I will program my insulin pump to dispense the appropriate dose of medication. But let’s say that I don’t eat as much pasta as I had thought I would. I check my blood glucose level before going to bed and it seems close to normal, maybe a little lower than normal but close enough not to be concerned and I fall asleep. Later, perhaps three hours or so, I become semi-conscious – my thoughts are spinning through my head I can’t catch the tail of any one thought. I’m clammy with sweat and occasionally, I have hallucinations (I think my son is in the room but he’s not, the dog is outside howling but there is no noise). Add to these symptoms the fact that I can barely stand and I can hardly see – the color is gone from my vision and I can see vague outlines of familiar objects. Here is the hard part – I know I need to eat immediately but I’ve lost all ability to concentrate. My thoughts are racing after each other in one constant buzz - Ihaveto gotto eatgottoeathavetoeatnowsomethinghelphelpfoodneedtoeat. The lack of glucose in my system is now stressing all my major organs and my body is shutting down to protect itself.

Sound a tad harrowing? It is when I think about it, but it has happened to me so many times in the last 30 years that it doesn’t seem abnormal nor, frankly, does it even seem unusual. Here is the oft repeated resolution to my low blood glucose:

When I was single, I reached over to my bedside table and drank the juice box that I placed there just for that reason. With some glucose in my system, I could then function enough to get to the kitchen if I needed something else. Now that I’m married, I will wake my husband who will help me check how low my blood glucose is and will help me with drinking the juice or making a peanut butter sandwich with a glass of milk. By the time my blood glucose has stabilized, I’m sweated, exhausted and drained of energy. And then about three hours later, I get up and go about my day.  

I’ve never taken a sick day because I had a bad “low reactions” as they are called. No one I consider a friend or member of my family has ever commented on the blood-letting ritual I perform before every meal. I certainly was never allowed to miss school, skip homework, or simply not do something because I was reacting to my Type 1 condition. I love that my family and friends did this for me.

I recently met with Dr. Swedish, my coordinating transplant surgeon. In preparation for my eventual kidney transplant,  she asked a series of questions about my life. Married? Yes. Kids? One. Job? International Software Project Management. Volunteer? Yes. How often? Weekly.  Spouse's work? Software Development and Testing. Pets? Yes. Kind? Big dog. Travel? Whenever possible.

After writing all this information down she looked at me with a smile and said, “You really thought you could do it all didn’t you?” I gave her a look with arched eyebrow and said “Yeeeessss… “. She laughed kindly and said that 90% of her patients hadn’t done half of what I’d crammed into my lifetime thus far.

From the time I was diagnosed, I have had four friends who were my age and were Type 1 diabetics. Two of them are dead.  I realize that my life may be shorter than I want it to be – all the more reason to live it exactly the way I want to. I didn’t realize I was doing just that until I couldn’t anymore.

Make two grins grow where only a grouch was before

I must tell you, my fine and fearless readers, that when I start writing my blog entries, my intent is to write something funny. Really, it’s true. Okay, maybe that war\health insurance analogy post wasn’t an upbeat one but I’ll use the excuse that I’d had a bad day.

Funny is a lot harder to write than I originally thought. I do take a certain amount of pride in the fact that I can usually make people laugh, even in a tense situation. It’s a skill that can sometimes go sideways in professional environments – you gotta time your comments juuuuusssttt right.  The same thing applies to physicians; if you’re going to make them laugh, you’d better time it right.

As I’ve mentioned before, I really like the team of physician’s I’ve chosen to work with. I don’t have a general practitioner because everyone I need is a specialist. And really, what does one call a group of physicians? Group really doesn’t convey the cache’ they deserve. At my house, we fondly refer to them as “a plethora of ‘ologists”.  Plethora is just a fun word to say, and so much more interesting than boring old “group”. And that is part of the reason why I like to make my physician’s laugh – it allows me to absorb the news they impart with a smile.

Some of this “need to be funny” is just my personality. Keeping people happy and laughing makes me feel at ease. I think it also comes from many years of awkward appointments where I was ashamed or uncomfortable and I didn’t know how to “fix” what I was feeling.

I was ten years old when I was diagnosed with Type 1 diabetes. It was 1983 and the way you checked to see how much glucose (sugar) was in your system was to pee on a stick. Three to five times a day. So just imagine – your ten, summer before fifth grade, you’re feeling a bit self conscious already because that’s just what happens when you’re ten and some doctor tells you that you are going to have to pee on a stick, AT SCHOOL! Nope, noooo embarrassment in that situation at all.

Now that I am the parent of a ten year old, I can’t imagine how my parents dealt with me in those early diabetes days. People seemed compelled to say truly terrible things to them such as “You must have given her too much sugar”. That was a common one when I was in hearing distance. Then there was the nurse who pulled them aside to tell them they should prepare themselves because most Type 1’s didn’t live past their teenage years because they couldn’t take care of themselves. As an adult I am aware of how hard my parents worked to keep my diabetes related embarrassments to a minimum. I’m sure it took a lot of energy to make that possible. The least I can do to repay their efforts is to be as comfortable with my illness and physician’s, as possible.

I will spare you embarrassment stories about my first pediatric endocrinologist who is currently in jail for being a pedophile or the endocrinologist I had in college who is world renowned for his research but who screamed at me for having difficult insurance.  The difficulty of dealing with them has lead me to a successful technique for selecting and working with my physicians now.

Yesterday I had an appointment with Dr. Redmond, my podiatrist. We talked about the broken foot that still isn’t healing (and thus results in my wearing the boot cast for another month). Having talked with my other physicians, we agreed that until I have surgery and a kidney transplant my condition will remain the same. With great sincerity he said that he wished there was something more he could do. I gave him a deadpan look and said “Have you considered organ donation?” He let out a big surprised laugh and said that he hadn’t but that he’d look into it. We both walked out of the exam room with a smile. That’s a pretty good way to end a doctor's appointment.  

May life throw you a pleasant curve

I’m an optimist. I’m not necessarily a morning person mind you, but I don’t wake up grouchy or demanding coffee before I can function like a human being. I find humor in many things and look for happiness where possible.  I am grateful for this - whether it is skill or genetics -  because it keeps me sane in the face of absurdity that is my current condition.

But what is an optimist to do when what they can do isn’t much? I’ll spare you from having to consider options – I’ve already spent enough energy on that for myself and all the blogosphere. So, here is what I’ve considered thus far:

1.  Gardening

I love to garden but have difficulty holding a spade or digging in the earth for more than a few minutes at a time. Gardening in ten minute segments makes for a lot of frustration and not much planting.

2. Outdoor Activities

I’d love to go on a walk with my son and our dog but remember that boot cast I mentioned previously? Besides, I’m not really an outdoors-y person when faced with Northwest winter weather.

3. Decorating

Those who know me know of my personal obsession with interior design. High end or thrift store – doesn’t really matter so long as creativity is involved. Two downsides here – lifting and carrying objects greater than 5 to 10 pounds is not advised. So much for moving the sofa! Then there is the purchasing part of design. That requires money – something that you run short of when you are receiving only 50% of your paycheck but having to pay for many of the things you used to be able to do for yourself.

4. Children

In June, it was determined that my body could no longer sustain a pregnancy. Why is it that everyone seems to be pregnant in the month of June?!? About this one – I’m angry. I’m sad. I’m pissed off at God but we are working it out.  Nothing optimistic here per say but I find that I don't enjoy wallow in negativity.

 

These are all things I cannot "do" now. The crucial element here is that none of "can't dos" has prevented me from continuing to do what truly matters - loving my family and friends or even pursing things I’m skilled at, such as writing and reading.

Many people have many things they would like to do but can’t. I happen to know a couple of them…

My father-in-law dreamed of coming to the United States from his native India. He thought that dream might actually come true when his son came to America for work. Unfortunately, the health issues that plagued him for much of his life have now made that dream impossible.

Or my friend C, who was all set to study physics until a semi truck and a speeding Cadillac saw fit to crash into her car and cause brain trauma the likes of which our areas top trauma hospital had never seen before in a person who was still alive.

 Or my friend M, who already knew she had a severely painful nerve illness, but was managing her pain and working towards her teaching certificate. Then she found out that an undiagnosed genetic disorder would be rapidly draining her of energy and it will eventual be the cause of her death. Worst part? She does not know if it has been passed on to her children.

As it is with all of us, once something happens to you, you become more aware of it. I know people with chronic illness because we are, seemingly, bound by a common condition. My father-in-law is angry about his state of being. My friends try to take each day for what it is – a chance to live on their own terms. That is how I define optimism.  

You gotta start somewhere

Dictionary.com has a number of definitions for the word "patient". When used as a noun, the word is defined thusly: "a person who is under medical care or treatment". When the word is used as an adjective, it is defined as: "bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like." While not entirely defined by these definitions, both accurately describe my life - the later definition being most applicable to me during the last year. At least, I hope it does.

Why use the word "patient" to define myself? In all honesty, I'm something of a chronic patient. Having a chronic illness will do that to you. However, more recently I've become something of a professional "patient". I have been on disability since June of 2009.  Not necessarily unusual, you say - except that I’m only 37 year old. And I have developed a series of mystery ailments that have yet to be completely defined. Which is further complicated by the chronic illness I was diagnosed with as a child. All of which leaves me feeling as though I should be writing a script for the TV show “House”.

Over the past year, I have gathered a team of excellent physicians and agreed to dive headlong into the wild and mostly unknown world of treating serious illness in the American medical system. I undertake this adventure not for investigative purposes – I simply want my life back.  

Why use the moniker "fortune cookie" for this blog? My focus is on the fortunes themselves, rather than the cookie. Like the cookie, doctors are the delivery vehicle for the fortune, which is in this case, a diagnosis. However, much like American fortune cookie fortunes, a diagnosis is often somewhat cryptic and most definitely open to interpretation.

Over the next several months, I’ll cover some of the hidden costs and challenges of dealing with a chronic illness. Look for the following items at the top of some blog entries:

1.   Amount of money spent on parking

2.   Number of miles driven each day

3.   Social interaction moment

You may be asking, “How in the name of heck are these things relevant to the American medical system?” Let me explain:

1.  Most hospitals and physicians office charge for parking because they are located in city centers. Several of them seem to do it simply because they can.

2.  I live in the suburbs. The major of top quality medical care is located at city centers. Why? Refer back to what I said about parking fees.

3.  The majority of my day is spent with doctors, on the phone with insurance companies, or in the car driving to or from an appointment. It gets pretty lonely. I’ve been told to do something each day not related to my condition. It’s a challenge.

So, if you’re feeling brave, willing to laugh at some dark humor or just curious about how things really work for patients in America, check back here from time to time. I promise, an interesting fortune will be waiting.

You are more influential than you think

War is a nasty business. However, there is usually some justification or belief that a greater good will be served by those who fight the battles. When a war is fought nation against nation, thousands, if not hundreds of thousands of people are involved in the effort to garner a win for “their” side. Money is poured into the effort and speeches are made in support of the choices being made.

Historically speaking, most wars have an element of David vs. Goliath.  Someone, or some entity, is usually better financed or has more lawyers but the other party usually has the moral high ground. Hollywood is full of movies redolent with this message. “Philadelphia” is the movie I think of when my own David vs. Goliath battle threathens to overwhelm me. Tom Hanks’ portrayal of the tragically heroic attorney with AIDS – a disease now classified as a chronic illness, helps me try to keep perspective on my medical battles.  

In the last several months, I have been dragged into a number of skirmishes with my health insurance company. My personal military campaigned kicked off with a denial of service letter sent to me by my Medical Insurance Customer Service (MICS) department.  I launched my  first attack with help of my physician’s medical assistants.  Salvos were fired – I wrote down copious notes about who I talked with and what they said. When the medical assistances moved into forward position by asking the same questions I had asked in order to verify benefits, the MICS were unable to provide consistent answers and fell back to placing the calls on hold for ten to fifteen minutes at a time.  

Months have gone by with some battles lost, others won but overall I have been gaining ground. My troops have increased to include my physicians, their nursing staff and an untold number of medical clerics and assistants.  Unfortunately, there have been causalities. The one that makes me the saddest is the loss of my hair. Under extreme stress, my hair falls out. Earlier this year, it had started to grow back. Since July, when the opening shots of this battle were fired, it began to fall out again. 

Why fight? Why lose hair, have increased anxiety attacks or short term memory loss due to extreme stress? What could possibly be worth fighting about at this level of intensity? It’s a little thing called a line item veto.

For those of you not required to know this kind of medical lingo let me quickly explain. A line item veto, also known as a “contractual exclusion” or the more innocuous term “general exclusion” is any medical treatment that an insurance company will not pay for, regardless of the condition. These exclusions usually include the a statement that says “except when medically necessary” but in my experience that usually has more to do with avoiding lawsuits than the actual care of patients.  

The line item veto is literally the bane of my existence. With so many mystery illnesses, plus a chronic illness, addressing issues of contractual exclusions and pre-existing condition has always been a way of life. When I was first diagnosed with Type 1 diabetes, blood glucose meters were a line item veto. Now blood glucose meters are given away for free and the testing strips they come with are covered by ever insurance plan in America. 

My current line item veto war has many facets but here one of the more compelling examples:

·         My current health insurance has paid $4,500 (and another several thousand in Dr. appt fees, X-rays and MRIs) for a bone growth stimulation machine because my bones continue to break but not heal.

·         The insurance company will not pay for the $35,000 (which includes follow up appts.) surgery that could alleviate the condition. Why not pay?  Because, like the blood glucose machine back in the early 1980’s, no physician could prove\ guarantee that the surgery will reverse the condition.

We have reached a point where a “Yalta Conference” of sorts has been scheduled. The insurance company has already spent over $10,000 to deal with my constantly breaking bones with more money coming due every day. After four months, my bones still aren’t healed and now my kidneys are failing at a faster and faster rate as my body fights off some unknown cellular army.

I’m pleased that I have been clever enough to maneuver and strategize my way into a state of negotiation with my insurance company but it has come at a price. Soliders who have actively participated in a war know that no one ever really wins. You can only hope that no one else will ever experience the nightmares you live with everyday.

Your everlasting patience will be rewarded sooner or later

Paperwork doesn’t bother me. Perverse, I know but there it is. I like making sure that every ”I” is dotted and every “T” is crossed. This ability to track every detail provides a sense of accomplishment, especially now. These types of little accomplishments are now what I strive for everyday. It is a means of keeping myself focused. After working at an exhausting pace while parenting and living life to the fullest, I find that I am irritatingly limited and occasionally desperately bored while my body continually reminds me that I am not physically capable of doing a quarter of what I used to.

What is a bright but bored girl to do? She wages war on her insurance company, that’s what. Okay, war is perhaps a bit strong but then again, when each interaction is a battle and planning your care coverage requires the strategic skills of both General Patton and Viceroy Mountbatten you can see how the analogy might come to mind.

Lest you think this is going to become a political diatribe I will now set you at ease – my particular battle has nothing to do with the current state of American politics. My particular story will not help solve the for-profit\not-for-profit argument that is alive in the halls of the Congress and the Senate at this time. Maybe it will be someday but that is not the topic for today. Today, it is all about those “I”s and “T”s I mentioned earlier.

A quick bit of history – until July, 2010 I had the type of health insurance most people only dream about. I could see any physician I wanted – it was covered. Want to work with a naturopath? Covered.  Need expensive medical hardware? Covered. Weight-loss surgery? Covered. In full. For four years, I did not have a single co-pay for doctor’s appointments or medication.  I could see who I wanted, when I wanted and follow-up with any treatment recommendation I chose to follow. When you are chronically ill, this is a special type of nirvana. All was well in my medical insurance magical kingdom but things were not so rosy for the man providing this coverage (a.k.a. My Husband).

The job that allowed him to provide this amazing medical magic was draining the life and soul out of my once energetic and thoughtful spouse.  Work hours got longer, bosses got more critical and projects that had once inspired him disappeared with the worsening economy. As his company strategized and re-strategized the role for his department, people began to leave like the proverbial rats from the sinking ship. He wanted to go and he tried many options but all led back to the same place – lousy healthcare plans.  Increased salaries and bonus structures sounded as though they would make it all worthwhile until we started counting the cost of co-pays, prescriptions and non-preferred provider charges.  $18,000 out of pocket here, $22,000 there. And yes, I am well acquainted with the tax-credits for medical expenses. We were taking that into consideration in our counting. For those of you who are healthy, I would now like you to bow down and kiss the genetic gods who have blessed you. 

Alright, off your knees already, there will be more to feel grateful for later.  

Husband found a new job at a place he liked. As I predicted, they loved him. He started working on his new dream and my medical pie-in-the-sky existence came crashing down. I was prepared for some of it but five 3.5” binders full of paperwork later and I’m not so sure I did enough expenditure calculating.

Five months into this new insurance plan and the company is just now getting around to sending out bills and reimbursing physicians. I’m on a first name basis with several medical billing firms around the country. I have a tab for every physician billing department, notes about who I talked to, when I talked to them and VERY specific details about what they said.  The insurance company themselves have their own special binder with similar sets of notes. I have first and last names, phone numbers, extensions, dates, times and every scrap of paper is cataloged.

In all honesty, I’ve dealt with crappy medical insurance for most of my life. However, I am no longer willing to accept that what they say is gospel. I’ve seen exceptions made where they swore there were none. I’ve had hundreds of dollars of medical bills wiped off my accounts because of billing errors.  I have a goal - I need to get healthier. I’m really good at paperwork. More importantly, I have the time to become stronger.  In the words of John Paul Jones, that hero of the American Revolution, I have only begun to fight.

Your ability to juggle many tasks will take you far

Parking lots are my nemesis.  Unfortunately, there are precious few physicians who don’t have a parking structure attached to their office. Even when there is no fee to park in said parking lot, there are innumerable hazards lurking around every dark turn. Perhaps you think I exaggerate? Guess again oh un-initiated!  My automobiles have a catalog of parking lot related injuries almost as long as my list of illnesses.

I can almost see you out there – you are thinking “What does parking have to do with chronic illness? I thought she was going to be talking about how to cope, etc?”. Well friends, let me tell you, parking garages can have a much more profound impact on you than you might initially assume.  

It all starts with getting to the garage itself.  In Seattle, the location of my many and varied physicians, we have a mind-boggling collection of one-way streets.  To get to the garage for my endocrinologist, a driver must exit the freeway and within five seconds must immediately choose one of five different streets to turn onto. The streetlights are no help – it is almost impossible to tell which one is tied to which street.  If you are lucky enough to have chosen correctly, you must proceed down another few blocks knowing which block is the “magic block”. The so-called “magic block” is the only street you can turn onto and proceed far enough into the city center to then perform a series of right turns which will eventually lead you to the left side of a one way street garage entrance into a 100 year old building where the exit and entrance are the same location. Did I mention that entry\exit is on a 70 degree angle and wide enough for only one car? Assuming you have been clever enough to make all these turns and not run into anyone else, you must proceed into a garage where you leave your keys in your car and pray that a parking attendant is somewhere nearby. Otherwise, you simply have to trust that your car will not be stolen while you go looking for someone to give you a parking slip as you try to get one of the two perpetually pokey elevators to come all the way down to the basement of the building.  All this fun and excitement will only cost you the price of a half tank of gas and $10 per hour.  Fun! Does anyone wonder why my blood pressure is consistently elevated?

Of course, this scenario is one of the more extreme examples but imagine – I do this kind of parking garage dance-of-death four to eight times a week. Each office has a different challenge. Some are so poorly designed that they aren’t wide enough for cars to back out if an SUV is parked across the aisle.  Other garages don't have obstcles but cost per hour for parking is $20. Park on the street you say? I absolutely agree but that would require my being able to find a spot on the street and there is still the matter of that pesky boot cast that severely limits my mobility.  I’m also taking anti-anxiety medication. Does anyone see the contradictions here?   

In the coming days, I’m sure to talk about the challenges of medical insurance, the difficulties of drug coverage and other such topics but keep in mind – just getting to the appointment is really half the battle.

Your attention to detail is blessing and curse

We have made it to another week of stories here at Fortune Cookie Med. and I’m rather pleased with all the generous comments my fine readers have shared thus far. Important to note – a few have mentioned that some words seem to be missing at key places. Honest criticism is crucial to the writing process and appropriately humbling when one gets a bit too pleased with their own writing.

To date, I have resisted the urge to go back and fix the issues. Once posted, I consider my writing on the subject to be “published”. An odd compunction for an admitted perfectionist but it has purpose. What purpose could possibly be served by leaving mistakes in my writing? It serves as a reminder to me that I am not as well as I like to pretend.

Just as the phrase “get well soon” is intended, by my estimate, as a kind gesture, the words “but you don’t look sick…” are meant to be reassuring and thoughtful.  For most people with a chronic illness, me included, those words grate on the soul of the sick persons self-worth. It is much easier to pretend you aren't sick when you don't look it. It makes it even easier for others to believe you aren't sick either.  

Lately, I’ve considered wearing a sign around my neck to serve as visible notice that all is not as it appears to be. The feeling usually strikes after I’ve been glared at by the hundredth elderly person as I pull into a disability parking spot.  On those rare occasions when I don’t have a boot cast on, the glare is occasionally followed by some choice words or snide comment.  I’ve also considered sign-wearing after some asks me where my kids are or what husband does for a living. Apparently, a woman running errands in the middle of the day who does not have the polish of Jackie O and is therefore not a “lady who lunches” must be a stay-at-home-mom who has ditched her kids with a nanny or is attached to someone in the high-flying software industry which so readily produces young multi-millionaires. Nope, not me.  Not by a long shot.

My intention is not that anyone should feel sorry for me – quite the contrary. I feel amazingly blessed to have a son who comes home and says "How can I help, Mommy?", a husband who has long work weeks and comes home to do 90% of the housekeeping, and friends who come visit from places both near and far.  I suppose my point is simply that for most people, all is not as it appears. You never know who has just lost someone important in their lives or is struggling to make difficult choices for an ailing partner or parent. Or in my case, is struggling with the loss of the skills and abilities that were once the core for her  career.

I never really understood the saying “if I didn’t laugh, I’d be crying” until recently.  Most days, I laugh. My darling two year old friend whose penchant for dresses and dirty feet always brings a smile to my face. My husband singing in Tamil while folding the laundry is another good one because he does it with with such enthusiasm. I look for reasons to laugh because really, it is a lot more fun than crying. And it doesn't mess up your mascara nearly as much.

You are talented in many ways

Daily Totals:

Parking Fees: $0

Miles Driven: 5

Social Interactions: 1

Keeping track of appointments, phone calls, prescriptions, and receipts for FSA can present an interesting challenge for someone with short-term memory issues. Okay, it is a really big challenge for me but I’ve decided to tackle it with all the project management skill I can muster. My solution is lists and binders and calendars, oh my! Well, it’s really only one calendar but it is very well loved.

The keys elements in my organizational arsenal are my medication list, the physician’s list and a chart note and test binder. The lists get updated monthly and my binder gets updated daily. The benefits of these organizational aids are actually three-fold:

·         One – they save me from trying to remember which medications have and haven’t tried (especially when meeting a new physician and the chart notes from some other necessary physician haven’t been sent yet). When you are taking a dozen different meds at a time, you lost track pretty quickly

·         Two – when trying to get those chart notes sent, it is best if you can simply hand over a list with physician’s names, addresses, and phone numbers. ANYTHING that prevent the office staff from sticking your request into their massive pile of other similar requests will get you what you need a whole lot more quickly.

·         Three – being on disability requires filling out lots and lots and lots of paperwork. The long term disability insurance company wants proof of all the meds, all the doctors, all the tests, all the office notes, you get the idea. If you’ve already put together what they want, you don’t have to spend hours on the phone with them (I really hate spending hours on the phone with them…)

And those physicians? They really are the crucial actors that make up this little drama that is my life. I’ll introduce you now to the cast of characters who fill the majority of my new “professional” life these days.

NOTE: Their names have been changed.  I really like working with these people and I’m not feeling generous about sharing them. Do you know how long it took me to put this team of people together?!?  It’s hard enough to get in to see them as it is...

Dr. Olive: endocrinologist (and the de facto coordinator of care which means she's fabulous)

Dr. Capitol: nephrologists (taciturn and treats me like an equal – a unique trait in a physician)

Dr. Redmond: podiatrist (I like to think I make his day interesting with all my weird foot challenges)

Dr. Greenlake: psychologist (she is both a mirror and a window and I'm eternally grateful)

Dr. Bella: nutritionist (the first “food” person who has no interest in scolding me. Love that!)

Dr. Northgate: rheumatology (she’s new but she’s scary smart. I’m hoping for good things)

Dr. Trader: physical therapist (he sees me twice a week and he always has something interesting to say)

There are others, many, many others who come and go from my routine (which means I only see them every three to six months instead of every week or every other week). Look for their names to be added to the list as they appear in my daily travels.

Tomorrow is an appointment free day. Yippee! Now, if only my phone hadn’t been possessed by demons, I might have been able to make some plans with my good friend, T. Perhaps the phone is trying to say it is just as tired of calling the insurance company as I am. Something to ponder…

Your confidence will lead you on

Illness is a rather flexible word. A bit like “patient”, it can be applied to situations of widely varying severity. In the US, when someone says “I have an illness”, most people respond “I hope you get well soon”. A kind, thoughtful and I believe genuine response.  With someone who is chronically ill, there is no immediately appropriate phrase. “I hope you don’t die soon” just doesn’t have the same sort of kind and thoughtful ring that “Get well soon” does.

Chronic illness is, obviously, a constant condition and we seemingly have no socially recognized way for those who care about us to quickly share their sentiments.  To underscore my point, here is an example from the last few months…

In March, I tore the planter fascia tendon in my left foot. How did I do that? At a doctor’s appt. But more on that in a later post…. To heal the tendon, I needed to wear a neoprene and Velcro boot cast. With a custom-made orthotic to prevent sores from developing on my foot. With additional special padding to prevent skin damage to my leg. And a compression stocking to help with circulation so crucial to diabetic feet.  After wearing the cast for nine weeks, my podiatrist (we’ll call him Dr. Redmond) and I decided that I had to stop wearing the cast because my back and my hips were now in constant pain from limping around with the 4 pound, 3 inch platformed monstrosity.   The tendon had not healed as much as it needed to but I swore an oath to wear only my custom orthotics and tennis shoes.  I was out of the boot for three weeks. Then I broke a bone in my foot.

Back into the boot for six more weeks. Then another two weeks. Then another two weeks after that. The really insulting part is that no one knows how I broke my foot.  My left foot has now been MRI’d, Xray’d, Dexa scanned and pressure tested multiple times.

Strangers notice casts pretty quickly. They will ask “How'd ya do that ?” People in elevators say “Gosh, I had to wear one of those once, it was miserable”.  The people who know and love you see you wearing the same cast for almost seven months and they their concern is visible but no quick quip comes to their lips.  

How to deal with this? I don’t have an answer that would work for everyone.  For me, I have found that it is best to focus on the actions, and not just the words, of those who know and love you. I consider myself especially lucky as I have a pretty special group of clever and thoughtful people in my life. The young man who babysits my son told me the story of how his Mom “bedazzled” her cast. An artistic friend suggested that the cast could be stylishly enhanced with paint and markers. My Mom and I agreed that this is a great opportunity to wear silly socks since you can see my toes. My husband helps me put my boot cast on and sets up my bone growth machine every day. Today, some good friends presented me with a bunch of peel-and-stick rhinestones to embellish my now seemingly constant medical footwear.  Most days, I simply wear black pants and black socks to camouflage my black behemoth of a cast. However, I know that if the leg of my pants rises a little, I can see the love and care all the wonderful people in my life  -  the tightened Velcro straps of the cast, the paisleys on the cuffs of my socks and the little rhinestones winking up at me.   

May you live in interesting times

DAILY TOTALS

·   Parking fees: $9

·   Miles driven:  47

·   Social interaction: none

When last I posted I alluded to “mystery illnesses” and stated I had a chronic illness. In all fairness, I should be willing to name the conditions that make up my challenge if you’re going to be kind enough to follow along. But before we dive into that, a little background on how I got here…


I like to manage projects. I especially like really big, messy, filled-with-challenges projects. Most of my career has been spent in the deadline heavy world of software development. These likes present a unique challenge for someone with a chronic illness. The fear that you are over-stressing your system and thereby “letting” your illness interfere with your work often leads to an obsessive sense of needing to prove yourself.


Hours are sucked away by email. Late nights and early mornings are spent on conference calls talking to people working in faraway places. Addressing issues of employee infighting, hiring (and firing) staff, and eventually trying to squeeze in a few hours of actual work. Add in some people pleasing genes and a penchant for taking on impossibly screwed-up projects and you rapidly find that drawing boundaries to protect your health\sanity is tough. For me, it's nearly impossible.


Hundreds of hours, week after week after week. 100 hour work weeks were becoming my norm.  I was ignoring what was happening to my health. I told myself that if I just worked harder, concentrated more carefully, I could manage it all and things would get better. Things did not get better. 


The warning signs were all there – my hair was falling out, I was having issues with my short term memory, I couldn’t sleep but was exhausted, my skin had taken on an unhealthy grey tone and a constant sense of dread made the acid in my stomach go wild. I ignored and ignored and finally, I collapsed. 


After as day in the ER, my physician demanded I come into her office. One look at my pathetic state and she laid down an ultimatum: keep working and die or stop working and try to recover.  I love my family more than I loved my job. I stopped. I didn't get better.


Back now to the illnesses. During the last 15 months, several diagnoses have come and gone.  Sometimes things are better, sometimes things are worse. Here is the list of my conditions as they stand today:

1.     Systemic inflammation (aka arthritis) – cause unknown

2.     Systemic muscle weakness

3.     Bone destabilization (bone is breaking but the cause of the break is a mystery)

4.     Chronic kidney disease, stage 4 (there are 6 stages)

5.     Hyperparathyroidism, secondary to the kidney disease

6.     Hashimoto’s disease

7.     Hypertension

8.     Muscle tremors

9.     Depression

Did I mention I have had Type 1 diabetes for nearly 30 years? Some of these conditions are related to having had a chronic illness for most of my life. Others are new. It’s all a mystery.