It's Open Season! - How to Pay Less for Medical Expenses You Need

Still hunting wabbits . . .

Open season is still on the horizon, so I thought I’d offer another couple of health plan components that you may be able to choose from, the Flexible Spending Account (FSA) and Health Savings Account (HSA). Pretty straightforward, I thought, until my dad (the retired healthcare exec) laughed at me. Maybe not. There are several subtle and not so subtle differences between the two options, but they are still easier to understand than most health insurance policies.

In a nutshell, FSAs and HSAs help you budget for your medical expenses with money that isn’t subject to income or payroll taxes. You usually can’t get both unless you are eligible for a dependent FSA (not discussed here). But if offered, you should take one or the other because, as Dad always pointed out, if you don’t take advantage, it’s like paying 133% when you don’t have to.

The one thing that may limit you on this is monthly overall expenses since once you make your contributions, withdrawals for non-medical purposes come with a penalty. I would love to be able to max out my contribution (I’ve had each before), but often I need cash on hand to pay for other non-medical expenses. So, I try to get as close as I can to the total out of pocket maximum for my plan that year, as much as I can without limiting the ability to pay other expenses. I am also lucky that, if I do an annual wellness check, my employer will contribute a few hundred dollars (that doesn’t count against the maximum contribution limit). I get into what this means below.

Often, you have an idea of what your annual medical expenses will be based on the previous year: regular medications, number of doctor visits, medical device supplies, whether you are going to need planned surgery like for cataracts, or dental work. Use these estimates to come to an annual total and divide by the number of paychecks you receive per year for the amount of your contribution per paycheck, and see if you can afford to lose that much at a time. If not, start subtracting until you reach a contribution you can afford.

Then, if you have a choice, use our list to decide which option is the best fit for you. I will highlight the biggest differences between the two.

Flexible Spending Account

• The basics: Account is set up and owned by employer, there are no eligibility requirements, and no fees.
• Plan availability: Account is offered with both traditional health insurance plans (Health Maintenance Organization (HMOs), Point of Service (POSs), Exclusive Provider Organization (EPOs) plans) and high-deductible health insurance plans (Preferred Provider Organization plans (PPOs)).
• How it’s funded: Contributions are always deducted pre-tax from your paycheck. Distributions (when you pay for stuff) are tax free.
• What’s covered: Can be used to pay for health insurance expenses such as co-pays, deductible, coinsurance, and prescription drugs, as well as over-the-counter (OTC) medical necessities such as Band-Aids and medication (with a prescription – yes, your doctor should write you a prescription for OTC medication if you ask – does not include Band-Aids). You should check your plan, but most of them cover the things the IRS considers tax deductible. 
• Funds availability: The entire annual amount is available on day one, but your employer may impose a penalty if you use funds for non-medical items.
• Rollover: Before the Affordable Care Act (ACA or Obamacare), the employee had to use the whole amount every year. If you didn’t, the remainder went to your employer. Now the employee can roll over up to $500 if the insurance plan permits it, and any funds rolled over are added to the next year’s maximum.
• Contribution: The IRS has not set the FSA maximum for 2018, but projections are that it will remain the same as 2017, $2600. Employers can contribute amounts that push the total past the maximum, and you can only change contribution amounts during open season or upon marital status change.
• Portability: An FSA will disappear with a job change unless you are eligible through COBRA (a limited and expensive continuation of a previous employer’s health plan).

Health Savings Account

• The basics: Account is offered by the insurance provider and owned by the employee. Some may have a small fee, which an employer usually pays, but you should read the fine print to be sure.
• Plan Availability: Only offered with high deductible health plans. To qualify for an HAS in 2018, that means a deductible minimum of $1350 for a single person/$2700 for a family and a maximum out of pocket cost of $6,650 for a single person/$13,300 for a family. Additionally, to qualify for an HAS, a health insurance plan must not offer any coverage beyond preventive care before the person/family meets the deductible.
• How it’s funded: Contributions are tax deductible or can be deducted before payroll taxes are applied to your paycheck. Any growth or withdrawal is tax free. Some people look to these accounts as a good investment. I invariably go through them in a matter of a few months thanks to consumable medical supplies and expensive medications.
• Funds availability: You can only use funds that have accumulated by the time of need, and if you use the funds for non-medical items, those funds will be subject to previously waived taxes, as well as a 20% penalty.
• Rollover: Whatever is left at the end of the calendar year rolls over and accumulates.
• What’s Covered: Can be used to pay for health insurance expenses such as co-pays, deductible, coinsurance, and prescription drugs, as well as over-the-counter (OTC) medical necessities such as Band-Aids and medication (without a prescription). You should check your plan, but most of them cover the things the IRS considers tax deductible. 
• Contribution: The maximum contribution is $3450 for an individual/$6900 for a family. Individuals 55 and over can increase those amounts by $1000 (same for families), and you can adjust the amount of the contribution during the year.
• Portability: You are allowed to keep using HSA funds even after you are no longer eligible to contribute (if you switch to a plan that does not qualify as a high-deductible plan), and it can follow you from job to job.

For more information on these types of plans, see IRS Publication 969. And if you have more questions about insurance before or during open season, please contact me.

Birth of a Monster -- The Aftermath

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the third of three posts where I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here and part 2 here.)

The Aftermath

Thirty-five years ago, I survived meningitis. Two years after that, I had managed to recover from the paralysis of my left side. But it doesn’t end there. There were ripples, long shadows that I am still dealing with. My memory is much better for this part, or rather, my understanding, but the ripples are complicated.  They are physical and psychological, acute and chronic, affecting me and affecting others. Years of therapy have helped me understand the good (yes, the good), the bad, and the ugly.

The physical

The big stuff was behind me, but that wasn’t all there was.

• I had brain damage. I still walked into walls since I had lost some depth perception and I had seizures. I couldn’t ride rollercoasters. They were afraid that would make it worse. The first two went away. The second might have, but I missed that childhood fearlessness window, so I never tried.
• I had muscle atrophy in my entire left side, not something that can be fixed. It has caused a misalignment in the muscles in my back, which sends me to physical therapy occasionally, and may have contributed to a partially pinched nerve. My right side takes the brunt of any physical activity I do. I only discovered this when I was about 20. I went for new shoes, and the guy at the shoe store asked me if I knew my whole body sloped when I walked. Of course I didn’t. We tried to fix it with lifts, but it was so painful to shove those muscles back into alignment after that long, I gave up.
• I have a strength difference in the sides. The left side is about 20% weaker than my right. I can feel it, but no one can tell unless they see me lifting weights. The left arm just quits sometimes.
• I have had cataracts since I was 16, put there by the high doses of steroids I had to take during my illness and recovery. I should have surgery, but I don’t want to until I have to.
• I have permanently stained teeth. All those teeth whitening commercials really rub it in, too. But stains that come from a high fever are too deep for easy, inexpensive fixes.

The psychological

• I grew up too fast. After that I had no childhood. I had to know. Everything. My parents’ tenth anniversary was the summer I was seven, the same summer I started to walk again. They went to sailing school and left me and my brother with my grandparents. The only problem was that they had left the wrong instructions for my phenobarbital, a powerful drug that affects the nervous system. It is very addictive, a downer, and has a history of illegal abuse that lightened dramatically in the 70s and 80s, when it was replaced with a safer option, benzodiazepine.  We had a huge fight and I ended up locking myself in my room until they got the sailing school to radio the ship my parents were on to verify I was right. The alternative would have been a 7-year-old overdosing on barbiturates for 10 days. Dosages are difficult to calibrate, so an increased dose for that long could have resulted in coma and death.
• I hated having my picture taken. Hate might be too nice a word. Loathed. Abhored. Those might be better. I wanted no evidence of my time in a wheelchair. My shutterbug grandfather just wanted pictures of his granddaughter and I shut him down every time. Now I have no pictorial record of my triumph, which I regret. And I still hate having my picture taken.
• The closest friend I had dropped me as a friend because I wasn’t in her grade anymore, so I developed a mistrust of people and an extreme need for privacy. It made me doubt my value. My closest friends are my closest friends because they stuck around – they proved themselves -not because I invited them in.
• Boredom and apathy came often. School was easy, and what challenge could there possibly be after beating that one? I still struggle to find things that engage me for any amount of time.
• Then there’s the rage, oh, the rage. I didn’t learn until much later that the meningitis would turn out to be the catalyst every diabetic goes through to trigger the onset of my Type I diabetes. Most diabetics get a cold or the flu as their catalyst. But no, it seems my body must do everything in spectacular fashion, good or bad. It took eight years for the diabetes to develop, but when it did, I was beyond the usual level of anger new patients feel. I had already paid my medical dues, survived more medical baggage than most people would in a lifetime. Problem was, there was no outlet, no fault. So, the fury just sat there, boiling for about six years, but still simmering. I am just now learning how to find a life without it.

Harm to my family

My parents never talked to me about it, but I am sure it strained their marriage. The worst was the unintentional neglect of my brother. He was two when I got sick, a time when he needed the majority of the attention from my parents. Instead they had to be focused on me. I still feel guilty. I know it wasn’t my fault, but it wasn’t his, either.

Now for the good

• I am strong. I have no doubt. It’s something I’ve internalized, and can draw on when I need to steady myself. Nothing will ever be a crisis. 99% of likely life experiences aren’t going to be as bad as that one, so I can handle whatever you throw at me. Calmly and without drama.
• Learning is easy. The only way I could look like everyone else during was to read, so I did. A lot. I was lucky to have parents who indulged me when I disappeared into the bathroom for hours, the only place I could be (fairly) sure I wouldn’t be bothered.
• For the rest of the good, it’s hard to separate whether they’re from meningitis or diabetes or something else. There’s the risk aversion, the confidence in the value of the relationships I do have, and finding my worth outside of superficial concerns or other people’s opinions.

The bottom line is that being a child patient was a major foundational event for me, perhaps the foundational event. I have no idea who I would be without it, but I am fairly sure I wouldn’t like that person as much as I do this one.

Burnout

Do you ever want to go to the hospital? You know, when you're so tired and you can't seem to get hold of your condition? When better control is just out of reach and the easiest path seems to be to stop time and let someone else press reset? The thought has crossed my mind.

For many of us, managing our monsters is a full-time job. Add to that your regular job, your family, and any other commitments you have, and it’s easy to get sucked into that vicious circle of “I’m too tired to do X, so I skip it, which makes me too tired to do X.”

It’s a nightmare of a merry-go-round. If you can’t avoid getting sucked in, how do you get off?

The last time I had to, I was in college. I had been non-compliant (out of control) since my diagnosis and starting to develop major complications. I was almost too tired to be scared. When I decided to start following a regimen, I could give it my full attention. Even though I was working, I had a four-month summer break to hit the reset button.  

Adult life doesn’t have an off switch. The reset button is a lot harder to find when you have bills to pay. I think my job would not take it well if I just stopped showing up for a week. Or a month. I would really love a month.

My reset button is a two-parter: repairing my sleep cycle and getting back to regular exercise. Shouldn’t be too difficult. Maybe 2 or 2 ½ hours difference every day to cover both. And who doesn’t like sleep? OK, keeping one particular nephew in mind, who above the age of 7 doesn’t like sleep?

But I put it off until tomorrow because there is always something else I need to accomplish during that time. Plus, my goals compete with each other. How often do I put off exercise to get enough sleep to get exercise? Six hours is enough, right? As long as I keep my food intake in line, I can put off exercise another day, right? Right?

 (I think I’m making my monster dizzy.)

Wrong. Skipping the things we need to control our conditions compounds the symptoms and you become less and less capable of performing in the roles you put before your condition. My dad compares it to the plates and sticks trick in old variety shows. The performer would balance a plate on top of a spinning wooden stick. But there would be six. All in a row. The performer would have to run from one stick to the next to keep them spinning at the proper speed. If one slowed and fell, they all fell.

The only way to get off that particular merry-go-round is to borrow from Nike and "Just Do It". I know, I know, I absolutely hate that line. But there is a measure of truth to it. It has to do with taking stock and prioritizing in a way that will allow you to do everything you want.

A three-step process

First, close your eyes and count off your priorities in your head. Really, there is only one top priority on that list. You know what it is. I know what it is. It has to be your condition, and whatever you have to do to keep it under control. It’s the one we hate the most because other people don't have to do it. It feels the most like a burden, a chore, and we get nothing in return for our hard work. Except we do. We get the rest of those priorities, at full energy, full attention, full participation.

Second, don’t think about your long term goal, or what you “should” be doing. Think about what you can do. Can you do it once a week? Every two weeks? Once a month? Do it without thinking too much, or you will end up thinking yourself out of it. Set it as a an appointment with yourself in your calendar. If you wouldn't skip a doctor's appointment, why would you skip an appointment that was easier to get to?

Last, don't second guess yourself. Whatever you do, it’s more than you were doing before.

Every day I seem to loose a few minutes more sleep. I know my priority, but I haven't executed my plan. I'm not sure what I'm waiting for. I remember how it felt to be well rested and how powerful and empowered I felt when I was exercising almost daily. My confidence rose with my progress. I didn’t struggle to get out of bed or drag during the day. Seems pretty worth the effort to find a way back. Time to just do it.

If You Can’t Stand the Heat . . .

Summer in Washington is, um, special. Innumerable tourists flooding the attractions in matching neon t-shirts, buses eating up all the parking. Protests, interns, festivals. Tons of stuff to bring people to city center. Nevertheless, sometimes I brace myself in an attempt to not take my city for granted. The National Portrait Gallery is a favorite hidden gem.

But I digress. Everyone who knows anything about DC knows the worst part is the weather. As I write this, we are in the midst of a string of over 10 days in the mid-to-upper 90s. The “feels like” temperature often crosses 100 degrees -- all of the heat and humidity of the swamp it was, but without much in the way of relief. No breeze, no swimmable body of water. (My friends who sail take a break in the summer because the wind dies, and the Potomac and Anacostia Rivers are questionable at best.)

I absolutely refuse to protest in the summer. Shuffling along for at least six hours carrying a sign and a backpack in that kind of heat -- oh, yay. But the rest is doable. With the right kind of planning.

I’ve talked about this before, about what I have to shlep with me every day. Summer adds something to it. Heat and dehydration can be dangerous for people with autoimmune conditions. Many of our conditions make us vulnerable to dehydration without the heat – Crohn’s Disease, irritable bowel syndrome, anything that comes with low blood pressure (which makes it hard for the body to retain water), certainly diabetes. Things that are usually treated with a lie down and Gatorade -- exhaustion, dizzy spells, heat stroke -- can land you in the hospital with IV saline if you’re not careful.

I haven’t been admitted to a hospital for over 15 years and I don’t intend to ruin my record. But I also don’t want to stay cooped up in my apartment for four months if I can avoid it. I’m sure you feel the same, so here are a few tips to help deal with the worst of the summer heat:

• Drive. There is often no help for our kind of problems in metro stations. In Washington, there are no water fountains or restrooms at most stations, and air circulation is poor in the underground stations, which is most of them.  
• Even if you think you’ve had enough water, keep drinking. I bring two bottles of water with me during the day, one frozen and one not. I also keep water in my car for emergencies. Warm is better than nothing.
• Take stock often. Do that mental check you run through every morning to see how you are feeling. I am lucky that I have a way to monitor my disease dehydration, so I test my blood sugar at least every couple of hours. I only have to guess on regular dehydration. Pay attention to your respiratory rate and do not allow yourself to wait for a drink if you are thirsty. Nutritionist Kathy Rodgers says that if you’re thirsty, dehydration has already started.
• Limit your time in the sun. The National Mall and trail around the Potomac River tidal basin is over three miles. If you are out in a place like that, stop in museums or in the shade at regular intervals.
• Don’t push yourself too hard. Keeping up with healthier friends and not accommodating your condition may seem like a good idea at the time, but it will make the problem worse. I’ve never been dehydrated due to the weather, but I have experienced dehydration by pushing myself to do cardio past when I began to feel dehydrated. For me, that means excruciating abdominal cramps that take a minimum of 20 minutes to ease even when I am guzzling liquid. Great way to kill a workout.
• If you’re at a beach or a pool, splash around as much as you can. Sweat is your body’s way of cooling you down when you are too hot. Give it a boost with a cannonball or a good splash fight with your friends.

Above all, trust your instincts. They are a well-developed tool that we don’t trust enough. If your body is telling you to get out of the sun, get out of the sun.

Enjoy your August!

The Old Ball and Chain

No, I don't mean a spouse or significant other. Technically you can do without those for a few hours. I hope. But there are things we schlep with us all the time, that would literally make us sick if we went without them.

Recently, we’ve been talking about the hassles of big trips for people with chronic and autoimmune conditions, but what about every day? I absolutely hate feeling encumbered. Since high school, when I shamelessly copied my best friend, I go as many places as possible with just my phone/wallet shoved into the back pocket of my jeans. That’s hard to do most days.

I was talking to another autoimmune patient last week about having to drag a lot of crap with us everywhere we go. When I travel out of town, I usually take a backpack. It doesn’t fit much: laptop, phone (and associated cords), a couple small snacks, a sweatshirt, and . . . a giant drug carrier. Not the one with the little squares for each day, but something that holds the big bottles. I tried the other thing, but got stranded beyond my supplies a few times, so not anymore. And it’s not just when you travel. It’s every day.

The daily bare minimum for me is phone and blood sugar machine, just for trips to the grocery store or out to dinner. If I am heading out for a while, water, juice, inhaler, extra strips for the machine. An entire day hanging out in downtown DC or at the beach, insulin and needles for an emergency. Oh, and if it’s hot, a cold pack so the insulin doesn’t go bad. Maybe some paper towels so the sweating cold pack doesn’t make everything else soggy.

I worked hard to move away from a backpack after I finished graduate school. My sister-in-law even conned me into buying a “girl bag,” a.k.a. purse. I use it very occasionally. And a clutch for a formal event? Never. They are not big enough for my machine. And what about the guys, who often don’t have any kind of bag, or people who have to drag oxygen tanks behind them?

I can’t do anything without that machine. I’m one of those strange diabetics who has never been able to establish a steady biorhythmic pattern, so my insulin dosages are a weird combination of instinct and guessing. Being caught out without one has caused trouble often enough that I have five of them. One in my car, one at the two places I travel most often, one at home on the days I forget it at work, and the one I take everywhere.

Then there is the issue of insulin. I’ve miscalculated and run out a couple of times at work, which results in nothing good. I am reluctant to take it to work because I might forget to cycle them out once I open them, and they run the risk of going bad if not used in time. I can’t afford to not use even part of a vial of insulin.

Gives new meaning to the phrase “ball and chain”, doesn’t it? What’s yours? What is the one (or two or five) thing that you can absolutely not leave the house without? You carry an extra prescription in case you run out far from home and would cut a long weekend short if you forgot it. So what's your ball and chain? I would love to hear your experiences in the comments section.

Adventures in Overseas Travel: Lessons Two and Three

Having spent a recent night on Concourse C at O'Hare airport in Chicago, I am reminded of the trials of my last international trip. That's not to say the trip wasn't amazing, but the logistics of it all left much to be desired, especially as it wouldn't have been nearly as bad if I had been healthy. And since 'tis the season for overseas travel, here is a series that will hopefully inspire you not to do what I did. Read Lesson One here. 

Lesson Two: There's no such thing as preparing too far in advance

On my second trip to the Caribbean, I was determined to not face a possible medical crisis on the first day, so I tried to prepare. I doubled the number of supplies I was taking. Half of my suitcase was filled with medical supplies. I brought entire bottles of pills so I would have what I needed in case I got stranded somewhere in addition to the usual traveling over-the-counter pharmacy. I even went to the doctor the week preceding my trip, so I could get new prescriptions.

As reliable as the office is, I did not anticipate the new computer system, which caused my doctor to delay calling in the order I needed. When Friday rolled around (I was leaving at 7 a.m. on Sunday), I went to pick it up. There was no record of a new prescription. Slightly alarmed, I called the endocrinologist on call, and she said she would phone it in right away. I called multiple times over the next few hours to see if the pharmacist had received a prescription for me, but the answer was always no. I figured it was just taking a while. The problem was, I didn’t have a while.

With less than 24 hours to go, I called the endocrinologist on call again. Turns out, 16 hours later, she hadn’t called it in yet. She’d worked until midnight. I get how difficult that is, but I had explained that there was a certain level of urgency, due to my access disappearing the next morning. It was getting difficult to remain calm. She promised to call it in as soon as she got off the phone.  

By the time that happened, it was snowing. I waited it out, figuring that they would need some time to fill it, and six hours should be plenty. Wrong again. When I finally got over to the pharmacy, still no prescription. This time she had called it in, but it hadn’t gone through. Nearing the end of my rope, I called the physician on call a third time in less than 24 hours. She was kind enough to talk directly to the pharmacist. I got my prescription, but had no time to test it before I left, as I’d been advised. Nothing like trial and error on vacation!

Lesson Three: 5:30 a.m. on a Sunday is not as early as you think

I usually drive myself everywhere, even the places some people might reach by plane. It's just one way I assert control of my environment. I am very careful about when I leave so I don’t sit in much traffic. I figured that, if I left my apartment at 5:00, I would arrive at the airport around 5:30 at the latest. That gave me 90 minutes. I would be fine – I didn’t have to park, there would be no lines to check my bag, security would be a breeze, etc., especially since the first leg was domestic.

Things I didn’t count on:

• When you reserve a Lyft/Uber in advance, it is perfectly plausible that they arrive on the later end of the 10 minute arrival window.
• Most people don’t have a lead foot like mine, so it will take more than 30 minutes to get to the airport.
• The process of checking a bag is a lot longer now that we have to do it all ourselves at kiosks.
• Even though TSA personnel should be familiar with common medical devices, they will still take every opportunity to pat you down and wipe some kind of indicator strip all over it.
• Wearing an ankle brace will set TSA all aflutter and they will start the swabbing process all over again.

When all was said and done, I just made it. When I went to drop off my checked bag, there were so many, we were all just leaving them in a big mess “behind the wall.” (This happened once at O’Hare with a standby flight, and that bag made it.) I was thankful that the second leg was delayed by an hour, but it didn’t help. My bag did not arrive until the next day. At least I was traveling with friends and I could borrow a shirt.

The bottom line: whatever time you think you need to get all your ducks in a row, double it.

Adventures in Overseas Travel: Lesson One

Having spent a recent night on Concourse C at O'Hare airport in Chicago, I am reminded of the trials of my last international trip. That's not to say the trip wasn't amazing, but the logistics of it all left much to be desired, especially as it wouldn't have been nearly as bad if I had been healthy. And since 'tis the season for overseas travel, here is a series that will hopefully inspire you not to do what I did.

Oh, for the love of tape -- always overpack your medical supplies

The first time I went to the Caribbean, I was totally unprepared. The functionality of my medical equipment depends in large part on whether it actually sticks to my body. The problem with the Caribbean is that the humidity does its best to make sure that doesn’t happen. The breeze feels great, but doesn't really help with that. I had packed plenty of infusion sets (where an insulin pump sticks to you) for the week I was going to be there. That is, for normal usage. About an hour after I arrived, I realized that it might not be enough. By about half.

I started looking for my usual options. Waterproof sports tape (to replace the adhesive on the set) was first on my list. Surely everywhere had some equivalent of CVS. No. The drug stores on the island were tiny, like the old time mom and pop places that existed mainly to fill prescriptions, as opposed to selling convenience store supplies. They were also mostly closed, as it was Sunday. Even the ones that were open were closed for a few hours over the lunch hour. If they even had tape.

The second option was calling the medical supply company to see if they could deliver some extra supplies. But there was no outlet to do that on this island. It would take three days to deliver to San Juan, Puerto Rico, and then they would have to fly it over. I was only staying for a week, so scratch that.

There was no option three. Well, except $1,000 ticket home. I didn't have $1,000.

I am generally a pretty laid back person, even a fairly relaxed traveler. I have always been blessed with the ability to fall asleep on takeoff and wake up upon landing. That is, except when I run out of something medical. As soon as I realize it, I immediately feel backed into a corner. This time was no different. As the situation progressed, I began to feel more and more panicky. What would happen if I ran out of supplies halfway through? I wasn’t sure I had enough needles to spend a week on emergency measures.

In the end we returned to option one. We drove around and around the island until we found an open drug store, where the pharmacist had to help us figure out what was waterproof. Not how I would have preferred to spend my first hours ever on a tropical island.

The second visit to this island I brought plenty of tape and needles. I thought about what I had before and doubled it. Then doubled it again. Same with the infusion sets. Good thing, too, since I would need them all.

To be continued . . .

The Book of Love* Never Had A Chapter for This

*Monotones, 1958.

Note: This article was written for philly.com where it originally appeared on June 16th, 2017. 

Dating is hard enough without the extra baggage of a chronic or autoimmune condition. Since long-term relationships have always seemed beyond me, I’ve had my fair share of dating experience. It starts out the same way as everybody else. You get ready, distracted enough to keep your nervousness at bay. Checking blood sugars every few minutes to make sure the stress isn’t making them go haywire.

Wait. That’s not like everyone else? OK. Well, you just want to make sure they don’t go too high or too low while you are trying to get to know your date. Oh, don’t forget to take a look at the menu of wherever you’re going before you leave. You need to know what you can have if diet is a concern, and how much medication you will need to cover it. If you can do the estimation beforehand, you might be able to dose yourself without your date noticing. You keep your fingers crossed that you guessed right. You can always excuse yourself to take a blood sugar in the restroom, but you only want to do that once. Any more might seem a little weird. One more finger stick before you get out of the car.

Then you get there, that knot in your stomach eases, and you have a good time. Hopefully more than good.

Next round. You want to see them again. When do you tell them what you’ve got? How much do you tell them? How do you drop it casually, offhandedly? Because whenever you decide to tell – it’s such a pain to go to the restroom every time you need to check a blood sugar – it’s way too early to tell them how serious it really is, about how there will be times when your symptoms will keep you from seeing them. You might want the company, but you don’t want them to see you like that. Or that you have more doctors than any five of your colleagues put together.

You’ve gone out a few times and now you want to take them home. Using protection should be a given – the pill and condoms. Our immune systems hate us. We can’t afford to make mistakes. Ever. Does anyone really want to risk chronic or autoimmune symptoms imploding over a $1.50 condom, do you?

I also have the special challenge of being permanently attached to an insulin pump. I’ve found that guys don’t really care, but I am self-conscious about it. And where do you put it? I still don’t have a good answer for that, although attempting to find a good answer can lead to a certain kind of funny.

But the funniest part? It's all self-imposed. While I work myself up looking for the Book of Love, no guy I have ever dated blinked twice at my "big reveals." And yet, I do it every time. Just like every girl on the planet, but with that extra chapter.

First Down and 9*

*For those of you unfamiliar with American football, when a team gets the ball, they have four chances (downs) to move forward 10 yards. I have gained one yard in my first chance. Still have nine to go.

A few weeks ago, I wrote about how I’ve been struggling to get back to the routine I want, the one that, if I follow it, will lead to optimal health. (It’s only been a year since I was at the top of my game.) In the six weeks since that article, I have sporadically been following the plan I laid out for myself --simply re-starting my exercise routine and going to sleep on time -- but only sporadically. Definitely running backward a bit. My goals now are basically the same, but I have arranged things to give myself every advantage, as opposed to struggling against logistics that sometimes work against me.

First, I asked for flex time from my employer. This falls under the category of “reasonable accommodation,” something that we are legally entitled to under the Americans with Disabilities Act. Because of my bouncing blood sugars, I was having real trouble exercising before work. I was either too high or too low or too tired (because of the too high/low), and would have to treat myself before I could run. That took time I didn’t have. So, I asked to start coming in to work at 6:00 or 6:30 since I was up anyway, and leaving at 2:30. This allows the commute time to be my treatment time, and I would be ready to get going as soon as I got home. I had to get it in sometime. Lack of exercise is one of two primary reasons my blood sugars are bouncing. It took a while due to the red tape provided by my company’s disabilities office, but my request was granted. (NOTE: Disabilities offices are there for your protection and your company’s. They are your official advocate in the workplace. Just because I don’t have the patience to deal with it doesn’t mean they don’t serve a useful purpose.)

Second, I elaborated on and expanded my goals. Slightly. Sleep on time is coming easily as exercise is wearing me out. But there are a few components to exercise. My new weekly tracker has four things on it: number of days my blood sugar stays under 200, number of days I do cardio, number of days I do weights, and number of days I hit my meal plan target. I am ignoring the latter for right now and the first one will come easily with the cardio and weights, so it’s only a little tiny bit more than before, mainly more frequent blood sugar monitoring.

Third, I enlisted friends to help. I know we are “supposed” to do these things for ourselves. To find the motivation within. The theory is that if we depend on external motivation, we will falter when it goes away. Maybe so. But there is a reason workout buddies increase the amount of exercise you do (there’s a study). Mine are not actually workout buddies per se, but they are checking in and I know I’m in trouble if there aren’t enough tick marks next to a goal.

But the hardest part? As my body adjusts, I will gain weight. It will take about two or three weeks for it to figure out that I'm not actually trying to starve it. If I want this plan to succeed, I have to make myself sit there and take it. Which I am, so far. 

All of this has led me to my first baby streak – three days of both cardio and weights/resistance training. I can already tell it’s going to exhaust me until I adjust, probably a couple of weeks, about the time I stop gaining weight. It’s a different exhaustion, though. Before it was sick exhaustion. Like when you have the flu. You’re kind of stewing in it. This is clean exhaustion that will send you to bed on time because you are actually tired and falling asleep.

Along those same lines, I confess I am proud of my baby streak, made up of just three baby steps, and that goes a long way. Right now, it’s solid. It feels like it will stick. I am a master of self-sabotage and an all-or-nothing kind of person, which is generally not healthy, but if it works in my favor here, I will take it. As I’ve said before, without a return to this plan, I will have nothing. You can walk around the world in baby steps, so yes, I will definitely take it.

Tip: Make it simple.

·        My tracker is a piece of paper tacked to a cork board. I’m keeping track with tick marks. You know, four little lines then one diagonally across for the fifth. Easy.

·        I also switched from a Fitbit to a Polar 10. Fitbit is great, but it allows my neuroses to run away with me – obsessing over every number in every category without focusing on the overall picture. The Polar is just a heart rate monitor that will keep track of calories burned during a workout. That’s all I really need to estimate what my intake should be.

Simple means something to me that it might not mean for you, so experiment to see what works for you while still giving you all the information you need/want.

Paper, Paper, Everywhere (Part II -- Care Coordination)

Reader Kimberley Dahline of Finally Filed helps patients and caregivers keep track of their paperwork. She wrote in two weeks ago asking about how I keep track of mine (not just when I'm proud of my labs and pin them to the wall of my office cubicle.). Last week, we covered billing paperwork. This week we are talking about medical records.

Care Coordination

This is for when you have multiple providers who may not have anything to do with each other, but you need someone besides yourself who knows the whole story. Sadly, this one is on us, too.

Step 1. Coordinate visits for your convenience. I have a dozen providers, many of whom require different sets of labs. In order not to get stuck like a pincushion more than necessary, I coordinate them. I schedule all the appointments within a week or so of each other, and I ask for future lab orders so I can get them all done at once and so that all of my doctors will be able to see all the most recent results. I keep the orders in my car in an effort not to lose them over the three to six months between visits, but the front desk staff has gotten used to me calling to have them sent again.

Step 2. Get a General Practitioner (GP)/Internist. I shamelessly use mine as the ringleader in my circus. Everyone with multiple providers should have a ringleader – someone who has a bird’s eye view of all of your records. For him to be effective, I have to sign a release form telling the lab company and other providers’ offices to forward all results and notes to him.

I know what you are thinking. Another doctor? Really?

Once I didn’t think I needed a GP, either. But my endocrinologist (diabetes doctor) was tired of treating every sniffle and wound, so he sent me to his. I waited so long that the recommended GP retired, so I made an appointment with his replacement, who happened to be so good that I will travel across two states and the District of Columbia for my annual physical. Once, when I had an incident at work, I called my GP, who was able to look at all of my records and see that I had forgotten to tell my nephrologist (kidney doctor) that I’d had asthma when I was a child. It had been several years since I had been treated for it and I didn’t realize that it was still relevant. The nephrologist had prescribed beta blockers for hypertension, which had caused severe bronchoconstriction (constriction of the airways in my lungs) as the dose increased. My GP was able to look at the entire chart and tell me to stop taking the beta blockers immediately. The emergency room I’d gone to diagnosed it as a “cardiac incident” and let me go without changing my medication.

Step 3. Proactive paperwork. Doctors' offices and labs will not offer you a Health Insurance Portability and Accountability Act (HIPAA)-compliant records release form. (Learn more about the importance of HIPAA here). They usually have one, but you have to ask for it. If you do it this way, it's an annual process, like when you have to show proof of insurance every year. 

Sometimes it’s just easier to fill out a standard online form on your own and carry it with you to new providers. You can find one here. On this form, check field 2, option 2 to designate an unlimited period of records release. You can add to, delete, or reword any section to suit your needs, just be sure to initial any changes you make. Also be sure to keep copies for your records in order to get what you want while legally protecting all parties.

Tips and Tricks

There aren’t many tips and tricks for this one. More like one tip and one trick.

· Make friends with the front office staff. I can’t tell you how many times, and in how many offices, these folks have made the difference on a short timeline or even getting my request addressed at all. This includes the offices where I have a direct line to the doctor through access to email, cell phone, and/or text.

· If you get pushback from your provider, be firm. Tell them that you need someone who can see the whole picture, including those things that may not be related to your chronic condition. As mentioned above, drug interactions area good example of that kind of situation. And if there is still pushback, tell your provider that you are perfectly willing to use them as the repository for ALL of your information, and to see them as you would a GP -- for every sniffle, cough, and boo boo. This is usually a fairly good deterrent.