How Many Eggs in Your Basket?

I am one of those people who puts all their eggs in one basket. The more important the issue or opportunity, the more laser focused I become on the one path I want to take. I get all spun up and excited, whether it is likely to work out or not. Sadly, most situations seem to end up the latter. Like the latest one.

For Type 1 diabetics, there are a lot of elements to control. There are also a lot of options to choose from: long-acting and short-acting insulin, separate or mixed; blood sugar monitoring devices, either by finger (or other body part) prick or continuous glucose monitor (CGM); and insulin delivery systems, vial and syringe, pump, or even an inhaler.

I have never been one to pursue the latest gadget as soon as it comes out. I don't like to be the guinea pig, and if others are willing to weather the glitches before I have to, more power to them. It took a long time for my doctor to convince me to get a pump, but that was the only major change I made from the basics chosen for me at diagnosis. I tried a few CGMs, but they never worked, and I was happy with the regular finger prick method. Until recently, that is.

My recent detour from my regimen has resulted in progressively worse control, and I was starting to feel desperate, mostly because I no longer understood how my body worked. None of the biorhythms I had learned over the decades applied anymore. When one of my providers suggested a six-month-old technology that would intuitively keep my blood sugars in a good range, I dumped about two dozen eggs into that basket. It would be easier and quicker than any other option.

Once I made the decision to go forward with the combination pump and CGM, I wanted it now, which turned me into a bit of a Ms. Hyde. I am not entirely proud of how I handled some of the communications involved, but everyone came through for me (shout-out to Blue Cross Blue Shield CareFirst Administrators, who approved my new device in less than 24 hours even though I had six months on my old pump warranty. Never thought I would say that.).

I spent a few hours getting trained on my new device, setting it up and navigating it, putting all the pieces together and putting them in the right places on my body. And then, and then . . .

Not once did it occur to me that it wouldn't work.

Even though not one of the previous attempts to use a CGM had worked, I just couldn't accept that it wasn't working. I tried for over a month, tweaking the tech, moving the glucose sensor, but the CGM just wouldn't read accurately, and even when it did, the pump couldn't keep up with its readings, so my blood sugars remained high.

Well, what now?

Cheat, that's what, at least as much as I needed to. If that word is uncomfortable, think of it more as making my own rules, something at which I excel.

I moved the glucose sensor to an area on my body not approved by the FDA and turned off the artificial intelligence (AI) part of the tech, which was supposed automatically adjust my base rate insulin. Suddenly the readings, while still high, were looking a lot more accurate, so I let it run another week to make sure it wasn't just one accurate sensor. (It wasn't. ) Well, that was exciting. But when I tried to turn on the AI again, the whole thing malfunctioned, including the sensor. Not so exciting.

I theorized that the problem was either that the AI was based on information I had entered that no longer applied or that the pump itself was broken, but no one at the manufacturer knew enough to help me figure it out. My only option was to go back to basics, basics I hadn't needed to employ since my first pump in 2001. I started running fasting tests to figure out what my true insulin dosage should be.

And that's where I am now. If I got it right, I will try talking again with the manufacturer to see if they can answer my questions about why the AI doesn’t work when all the other parts do. I still hope I will get to use the AI eventually. It sure would make life easier. But for now, I will keep the two halves of my new device separate: one half proven tech upgrades (the CGM) and one half methods that have been around since the first injections (manual insulin calculation).

So please, try not to do what I did and assume that every new device will be the only solution to problems that have been effectively addressed for decades. Keep an open mind and see more than the easiest path. I wouldn't want anyone else to end up with the disappointment of a basket of broken eggs.

Some Nights

"Some Nights" by Fun. (2012) 🎶

Not to be morbid so soon after my post about fear, but for a long time, I was fairly sure I would die before I turned 60. This was one of the cornerstones of the overly strong mental defenses I developed in my teens and made insurmountable in my 20s. What was I supposed to think with all the diseases I had, including kidneys that only operated at about 50% at the age of 29? And if that were true why bother? With anything?

I unconsciously built my life around that concept. I didn't allow myself to commit to much, not people or activities or work. I never thought about buying a house. I didn't care much that work was a job and not a career. For the life of me, I could not visualize where I would be in five years. I used to tell people it was because every time I tried, everything would change. But it was really because in five years, I could be dead, so why bother to plan?

Then something strange happened. The chronic kidney disease – the one most likely to kill me – started to get better. When I was first diagnosed, I was led to believe that I was most likely on a slow decline toward dialysis and then a transplant if I could get one, depending on how stable I could keep myself. Ten years later, was that not still true?

Generally, it was, although studies were starting to show that if a patient could stabilize their kidney function, they could go on at that level forever. However, there was no evidence that people who reached stage 3 kidney disease ever recovered function.

None of us really knew what was going on. We speculate that I am hypersensitive to dehydration, which makes kidney disease worse, and as I began to exercise regularly, I also began to hydrate better, and my kidneys reacted well. Then again, it could just be that my body doesn't react as everyone else's does. The peripheral neuropathy of my early twenties is all but gone and I was that 0.03% of patients that reacted to amitriptyline with grand mal seizures. Whatever the reason, as my kidney function improved, my worldview began to change.

Maybe I wouldn’t die early. Maybe I would have time to leave some kind of legacy. Maybe I would have time let more people in. Or let any people in. On purpose, that is.

So what now? What do I stand for?

As they say in the title song, most nights I don’t know. It’s no coincidence that I started this blog shortly after I started getting better. Or that I switched employers for a more equal salary and better treatment.

The beauty of it is, I don’t have to know. Not really. Not yet.

It seems I might have time.

Detente

n. the easing of hostility or strained relations

I went to the World Congress’s Patient Advocacy Summit last week. It was part of four concurrent conferences addressing advocacy and clinical research. My guess is that the majority of attendees were from pharmaceutical and biomedical companies, both big and small.

For all of you patients reading this, I would also guess that your reaction to that last sentence was an almost involuntary stiffening of the spine and defenses locking into place. If you’re anything like me, your perception of the pharmaceutical industry is mixed. We are grateful that these companies are working on things to save our lives. Angry that the price often limits the most cutting edge of these treatments, without consideration of a patient’s financial situation or level of need. They also haven’t exactly been famous for including us in the development of their new products. Kind of like a toy company failing to consider kids. Doesn’t make a lot of sense, does it?

But I learned something last week. When I first read about the Forum, I thought the conference would be filled with people like me – civilian patient advocates. There were a few, but the patient advocates who filled the ballrooms in Philly were from the pharmaceutical companies.

Before last Monday, I didn’t even know that patient advocacy, outreach, or relations were careers in this industry, but there were lots of advocates there. And they weren’t just there to pay lip service. These advocates were sincere in their desire to close the gap between patients and their companies.

They acknowledged their own role in the disconnect between patients and researchers, and brainstormed ways to get patients more involved in clinical trials at every stage. One way was illustrated by the Parkinson’s Foundation, which has developed a program that works very well partnering researchers and patients. The Foundation keeps a database of advocates that the Foundation knows well enough to assign to specific studies when researchers ask them for patients who would be interested in helping to develop the study.

Pharmaceutical companies, academics, disease association representatives, and patients talked about adherence, and the barriers that keep patients from following drug regimens, including cost, access, even a little about mental health (which I believe is a big barrier to adherence – sometimes negative feelings prevent us from making the choices that are in our best interests.)

I met advocates and researchers from Pfizer, Sanofi, Novartis, Horizon, and Boehringer Ingelheim. There were a lot more I didn’t meet. When I did my follow-up, I got a better than 80% reply rate to my emails. They didn’t have to do that; there would be no consequence if they didn’t reply, and I promised no reward. This reinforces that their interest was genuine.

High drug costs are still a point of contention, but involving patients in the development of new drugs and therapies is a huge step in the right direction. If we patients can find a larger role in clinical studies aside from being subjects, we will all end up with more effective and efficient solutions to some pretty heavy problems. Who would say no to that?

Interested in growing the relationship between pharmaceutical companies and patients? Consider participating in studies to help others whose chronic disease patterns may look like yours.

Let's Talk About Fear

I’m going to die. Eventually. It terrifies me.

I pulled my monster out from under the bed yesterday. There was a lot of kicking and screaming involved. This was the raw, emotional side of myself I have been avoiding for over 20 years.

See, I am an almost entirely cerebral creature. I think it was both inherited and by choice, but I have beaten my emotional self back so far and so often that it hurts to even consider what I feel. When my therapist asks me how I feel about something, I automatically start talking about what I think. I don’t know what I feel.

It was a defense mechanism at first. I needed it. Boy, did I need it. When I was young, I felt that if I let myself feel anything, I would collapse, consumed by having to deal with my life. When I got older, it was so big I didn’t – don’t – know how to let it go.

Those of you who read this blog know that I realized my mortality early. I was not quite six when I was the only one in my city to survive spinal meningitis. That was hard, and it made me angry. I wanted to fight. Which was good, because I needed to fight in order to recover.

Then I started losing people. My grandmother to lung cancer when I was 10, a family friend and surrogate grandfather the same year. He had a heart attack. At the hospital they told us he would get better, but he had a second heart attack and died. Then it was a peer, a friend, Paul, who died over Christmas break when a drunk driver jumped a highway median. He was 12.

I got angrier and angrier with each one. It wasn’t fair. It felt like I was always waiting for the next shoe to drop. And shoe after shoe after shoe did drop. I was in a constant state of braced for the worst. But I wasn’t afraid. Not yet.

It took diabetes to make me afraid, or rather, a gaggle of well-intentioned providers – doctors, nurses, nutritionists – to teach me that. To be fair, that was the prevailing wisdom in 1991. They would harass, harangue, and threaten. “You will die of a stroke before you’re 19 if you don’t follow the rules.” I am sure I am one of thousands who has had to unlearn how I was socialized to my own disease.

I did try to follow their rules. It didn’t work out so well. And instead of helping me find the right path, they kept trying to force me down a path I didn’t want to follow. My fear compounded when I was finally scared straight by the development of serious complications. Compounded, but never addressed.

By then, I had college to keep me occupied, at least for a couple of years. But before I could even finish that, my mother was diagnosed with pancreas cancer – a death sentence. I was sad and scared and desperate to hang on for as long as I could to the one who kept pulling me out of these things I got myself into.

That was the big one. My fear grew until all my other emotions had to hide behind it. I didn’t cry at my mother’s funeral. I would set my chin and clench my teeth and if I had to cry, I would wait until 2 in the morning, when I was sure no one could hear me, even when I was by myself in my apartment. I clamped down so hard on my subconscious that I actually didn’t dream for over 15 years. And no, it wasn’t just that I didn’t remember. I didn’t dream. I got REM sleep, but I did not allow my subconscious to participate.

I couldn’t afford to let any emotion touch me. If the floodgates opened, I would lose my self. (Not myself, but my self.) I still feel that way.

Ironically, the solution is to step away from my self, and to observe it for as long as I can, to recognize and understand whatever bubbles up. My therapist told me that in psychology, there is the rational mind (me) and the emotional mind (not me) and the best place to be is in the space where they overlap, the wise mind.

I've been running away from this for a long time. I'm not sure I even want to be in the wise mind. Rationality is easy, comfortable. It takes no energy, no change. But just because you decide you don't want to feel doesn't mean that you don't. I think that if I keep on as I have been, I will explode, which means my emotions will come out either way. I can either do it with some thought and control or wait until I have none. I'd rather it not come to the latter. So, I'll try. I make no guarantees, but I will try.

An Open Letter to CIGNA

Dear Mr. Cordani,

I hear you are buying Express Scripts. This letter is a plea from a former Express Scripts customer to closely scrutinize their business practices, which, during the time I patronized them, were burdensome at best and actively harmful at worst. I am not talking about a “simple” denial of services, but policies that substituted the company’s experts, whomever they were, for both the judgment of a provider who knew the case, and long-accepted medical standards.

Several years ago, my former employer switched pharmacy benefit management (PBM) organizations after only three years, from Express Scripts to CVS. For a company with over 20,000 employees, that was an incredibly short span for such a cumbersome change. I suspect it had more to do with employee complaints than some kind of better deal. In my account alone, the lighter transgressions consisted of: dropping two asthma medications in the space of a year, discontinuing access to the type of insulin that was specifically engineered to work well in insulin pumps, and changing the policy for blood glucose testing strips to go from rounding up to rounding down. The latter cost me 100 strips per quarter, which is a lot for someone who tested 8-10 times a day.

With my background, I always understood that plan coverage fluctuates. It is the literal cost of doing business. The real issue with all of those changes was that they were implemented in the middle of calendar years without notification. In fact, I knew nothing of any of these changes until I tried to renew the various prescriptions.

But as I mentioned, this was not the most egregious thing Express Scripts did. No, that label is reserved for the fiasco that occurred around Aranesp. Aranesp is an expensive anemia treatment often administered to cancer patients by a physician to counteract the effects of chemotherapy. In July 2012, The Washington Post published an expose detailing how Amgen, which makes Aranesp, was inflating costs, and some medical providers were purposely misusing it to make a bigger profit. As a result (presumably), Express Scripts acted to limit access to Aranesp across the board, lumping all patients who used it into one group.

Huge violation all the way around, I know, and all of those who were taking advantage of the system should have been investigated and punished. However, there were those of us with milder conditions than cancer or kidney failure (another common cause of anemia) who self-administered very small doses. We required a blood test and prior authorization for each prescription refill. Under those circumstances, the chances of us abusing our insurance plans was virtually nil.

Shortly after that article was published, Express Scripts instituted a policy where they decided they knew better than the entire medical community, as well as the patient’s (sometimes multiple) doctors, who were more familiar with the details of individual cases. Against the protests of both patients and doctors, they lowered the qualification for receiving Aranesp from a hemoglobin result of 11 to a 10, effectively putting it out of reach for those of us without severe anemia. No matter how many appeals Express Scripts received, they would make no exceptions for me or any of my doctors’ other patients.

Maybe to Express Scripts, it didn’t seem like such a big deal. It was just a point’s difference. Many of us with chronic condition-induced anemia fell into that category. We had mild cases, but we couldn’t fix it with more leafy greens and red meat. And I can’t take iron pills or liquid. They all give me a rash. Ironic, isn’t it? An anemic who can’t tolerate taking iron. I even tried putting the liquid in Jell-O. Tasted like I was sucking on pennies. And it still gave me a rash.

What did that mean for me? Sometimes I struggled for breath, and I felt sluggish and foggy all the time, which affected my job performance. It wasn’t a great quality of life then, and so easily fixable. The low likelihood of misuse should have warranted at least an individual assessment. But no, Express Scripts lumped us all together, as if all patients and all diseases were equal. But we are individuals, with individual needs and diseases that are as unique as fingerprints.

As far as I am concerned, what Express Scripts did in 2012 was ethically and morally wrong. So, please, as our healthcare system turns to a more value-based, patient-inclusive model, I implore you to closely evaluate all of Express Scripts’ harmful policies and decide what is right, not just for your business, but also for the patients who have no other choice but to use it.

Sincerely,

Claire Sachs

Founder, The Patient Advocate’s Chronicle

Buyer Beware

As chronic and autoimmune patients, we live lives of heightened control. Different conditions can be controlled by varying degrees. Some, like diabetes (my main one) allow for a lot of control because we know what causes it and therefore, what to do to regulate it. Some, like fibromyalgia are less well known, and therefore, it is harder to regulate. Either way, we focus on whatever details we can. We plan, we plot, we obsess over every possible way to exercise as much power as we can over our recalcitrant bodies. We think that if we can control all of these little details, our lives will be as close to normal as we can get.

The control we seek can involve several elements: nutrition, exercise, physical therapy, psychotherapy, medication, and medical devices. As research and treatments evolve, new or enhanced ways to address those elements become available. They may or may not be right for your condition, but we tend to jump on them anyway. If it’s new, it must be better, right? The next thing is the best thing.

Not so fast. The risks involved with new treatments can be scary, especially if the old one is working.

I have a thing when it comes to my condition. Everyone has a thing. We do it when we feel anxious or out-of-control, or sometimes when we feel anxious and out-of-control. Mine is research. If I learn of something that could help me exercise more control over my condition, I will research it to death. I read academic articles, reviews, technical specs if it’s a device, and talk to the people who run it.

While some of that information might be useful, not all of it is necessary. Here are a couple of things you can do to make an informed decision about a new treatment:

• Check with the FDA: Their processes for approval are lengthy and burdensome, but (annoying as they are) they are there for a reason. Run any new drug treatments, devices, and sometimes even diet supplements through their database and see what they have to say about the risks.
• Check with your trusted providers: You know your disease, but they will often know a lot about these “next best things”. Discussions with them are better than whatever you can come up with on the internet because you can’t tailor someone else’s reviews to how your body works. They will tell you whether the next development is just bells and whistles and not worth the money, or whether the latest diet trend is worth a try or a total fad. They will listen and make suggestions if you want to try new avenues of treatment.
• Listen to the voice inside your head: The truth is, we know. With a basic understanding of how the next best thing works, we know whether it will work for us. Instinct tells us. It’s hard to hear if we are feeling insecure or out-of-control, though. In those moments, we are prone to bury our inner voice under whatever we need to justify a new tool to address an old problem. Every time I have asked for a crutch to help me lose weight, the answer – from multiple doctors at different times – has always been no. Even using something as basic as an appetite suppressant could have a negative effect if used over a prolonged period of time. Each time I knew what they would say before I asked. I also knew they were right.

There’s a large industry built around all of these treatments, both legitimate and not. That industry spends a lot of money on advertising. They wouldn’t do that if it didn’t work. So, evaluate, but don’t get stuck in what the business world calls analysis paralysis. If whatever you choose doesn’t work, you can always go back to the way it was.

What Lawmakers try to Do to Your Healthcare While You're sleeping

The gears of American government are supposed to grind s l o w l y. Like molasses flowing uphill slowly. In winter. This is to protect us from emotional, knee-jerk policy, and to allow reasoned, public discussion and debate. Under our system, we the people know what a bill says before it passes, and we are given time to consider how it will impact us, our families, our neighbors, and our communities. It's also a good way to tell whether the people we elect are representing our priorities. No matter what they say, nothing shows a politician's agenda better than their voting record.

Our current Congress (the 115th), should know better, but, spurred on by an administration that doesn't understand how government works, it has repeatedly diverged from "regular order." Instead, lawmakers are attempting to rush things through state and Federal legislatures without giving us the opportunity to catch up. In fact, I suspect that it was Senator John McCain's (R-AZ) disgust with this lack of regular order that spared us from the outright repeal of the Affordable Care Act (ACA) last year, not necessarily any major objection to the bill's purpose.

After the failed ACA repeal, it was a relief to hold on to our rights as patients. Or did we?

A lot has been going on in Washington since then. Amidst news on Russia probes, Olympics, and horrific school shootings, our political leadership has been busy hoping you wouldn't notice a few little bills that slowly chip away at ACA protections as well as parts of the Americans with Disabilities Act, which has been around much longer.

Trump's tax bill already gutted the primary funding mechanism for the ACA. Here are some of the government’s 2018 efforts to both undermine and protect the ACA. For better or worse, each will have a profound effect on large sections of the chronic and autoimmune community:

• HR 3976: The Access to Marketplace Insurance Act – Probably the most common way to change things is through Federal legislation. The majority passes bills with hidden clauses or new laws and the states have to follow that rule. In this case, the House has introduced a bill to correct a bad loophole in the ACA. It bars charities from helping patients pay for their insurance premiums. For some reason, in at least 42 states, they are interpreting a line in the ACA to mean that only the one specific charity named – the Ryan White Foundation – is allowed to help instead of using that as a precedent to say all charities can help. If you would like to help see this bill passed, contact (write, call, email, Tweet) your Representative in the House. Let them know that you feel strongly that this is a wrong that needs to be righted. It’s nice to write in support of a bill for once.
• Step Therapy Bills – Another prime example of why we shouldn’t just let the states do what they want (see above). Though the states do good work in a lot of areas, most don’t in healthcare. Many states (14 with existing legislation and another 12 with legislation pending in 2017) allow insurance companies -- which often don’t employ doctors with expertise in your specific condition, and certainly don’t know the intricacies of your case -- to decide that they know better than a patient’s doctor. These states already allow or are trying to allow insurance companies to force patients to try less expensive treatments and fail before allowing access to the prescribed treatment. Some also allow extended prior authorization times. These practices can worsen a patient’s condition and, in extreme cases, cause irreparable harm. With these bills, we have to write our representatives on the state level. The bright side: state level legislators require fewer voter contacts to make an issue a priority and things happen a lot faster in statehouses. Oh, and both Florida and Oregon are doing the right thing, and have introduced state legislation to protect patients against these types of actions.
• HR 620: The ADA Education and Reform Act – This one’s a doozy. And it has already passed the House. Basically, the bill makes it a lot harder for disabled people to get equal access to buildings. It introduces a process that would allow businesses to potentially wait years to make legally mandated Americans with Disabilities Act accommodations. It also seeks to promote mediation and other “alternative dispute resolution mechanisms” over lawsuits. This is not intended to help the disabled person. The best way to stop this bill is to make sure it doesn’t pass the Senate. So far the House bill has been received in the Senate, but hasn’t been assigned a number yet. Watch this space for updates, and in the meantime send your letters, emails, Tweets, or calls in the direction of both of the Senators for your state. You could even get your friends in other states to do the same.
• Department of Health and Human Services (HHS) expands short-term insurance plans – Another way for the administration to take away patient rights is to alter the interpretation of some rules and regulations. In this case, they have expanded the period of allowed coverage for short-term insurance plans from three months to 364 days. These are meant to be stopgap measures if you decide to take time off between jobs or after 26-year-olds have to leave their parents’ plans. They often pay out less than half of what consumers pay in, and they are allowed to kick people off their coverage after major diagnoses, like cancer. There’s not a lot to do about policies enacted through the legislative branch except voting the President out of office (he and his appointees set agency agendas). You can always lodge a complaint with the agency, but executive branch employees have less at stake than legislative branch employees.

Want to take action, but not sure who to contact? Find your Congressional and state representatives here or use this letter writing tool here. 

The March of Progress

Technology is not my friend. I can walk by a computer and it breaks. When IT comes, the issue magically doesn’t exist anymore.

Because of that, we don’t talk much about healthcare tech in this space. But there are some pretty interesting things going on in that field. I was reminded by that when I started seeing emails for two upcoming conferences in my inbox: HIMSS18 and Health Datapalooza. Those savvier than I am -- tech companies, government, and nonprofits -- are all working to develop the next big advance. One of the most foundational, that might have a huge impact on our everyday lives, is medical interoperability.

Medical interoperability is when medical data systems talk to each other. Right now everything is siloed, partly because many doctors, hospitals, and pharmacies are using outdated systems and partly because of laws in this country that protect patients’ privacy. It was a long hard fight to get that second one, which manifests itself in the Health Insurance Portability and Accountability Act (HIPAA) and protects an individual’s health information as a measure to prevent discrimination against people with medical conditions. You don’t want to be the topic of general conversation in a hospital break room or for your family to be used as a worst-case scenario by your insurance company as mine was in the 1980s (and that was before I had diabetes). The only reason we even knew about it was because there was a family friend in the room.

Interoperability could revolutionize the healthcare industry if they can figure out how to keep privacy rules intact. If all your providers, insurance companies, and even you can see your entire medical record, your providers would have a more detailed and holistic view of you as a patient. Trends would be less likely to be missed and one provider might catch a warning sign in their specialty that another doesn’t consider important. If you were in the hospital, vital sign monitoring equipment could talk to IV equipment. Your doctor could monitor you from your Apple Watch or Fitbit. Research institutions could take information that had been scrubbed of your identity to help develop new treatments for your condition. Real-time information would take the place of catching up after months.

Technologically inept as I am sometimes, I would welcome advances in medical technology. Not just the ones that blow your mind like gene therapy, but those that address the back of the house. Let’s face it. Our biggest nuisance headaches come from the administrative side of the medical equation. If they can figure out how to save time by getting everyone’s computers to talk to each other, that’s something I can support.

If you want to know more, check out the conferences mentioned above. They’re coming up soon, and I for one will be curious to see what the new year might bring in medical technology. What new advances would you like to see?

The Things They Don’t Talk About at Parties

It’s bad enough to be diagnosed with a chronic or autoimmune condition. After the initial rush of fear, anger, and anxiety about what it means, there’s a period of adjustment during which you learn your disease. You get your prescriptions, your devices, the plan your doctors recommend, and then you have to ratchet it into your life. There’s a lot of trial and error. And if it doesn’t work, you start playing with what you’ve got.

For me, that manifested itself in something called diabulimia, an eating disorder where you don’t take enough insulin to cover your food intake and basically end up starving yourself because your body doesn’t have the tools to absorb what you are eating. One article I read years ago compared the damage done to your kidneys to putting an entire turkey – not a chicken – down your garbage disposal every day. Like any eating disorder, your body will start to shut down if it doesn’t get what it needs, but the damage is accelerated because of the already-impaired immune system.

Into the woods

I was diagnosed with Type 1 diabetes when I was 14, a very vulnerable age for girls and boys. I had never been thin (it’s just not my genetic build), but before my diagnosis I weighed about 90 pounds. It was just when women’s clothes were vanity sized into size 0, and even that was a little loose. Everyone – teachers, friends -- told me how good I looked. Funny how my parents never did. They must have been worried to see me eating about 5000 calories a day and still be that thin.

When we finally figured out it was diabetes, doctors put me on a 2500 calorie diet and wouldn’t take me off. I gained 60 pounds in six months, started associating insulin with weight gain, and hello, eating disorder. It lasted six years and almost cost me my vision (retinopathy) and my mobility (neuropathy), and did cost me at least 40% of my kidney function.

Out of the woods

I was lucky. We had a family friend whose wife was diabetic. When I started getting retinopathy, he arranged to send me to the Joslin Clinic, which is the gold standard for diabetes research and treatment. They helped pull me out of it.  I was 20 by then. If I had continued, I would have killed myself eventually.

Apparently, diabulimia is a fairly well-known phenomenon, although it is not recognized as a complication of diabetes either in the United States or the United Kingdom. I never heard a medical provider mention it until long after I’d been scared straight. Granted, my first endocrinologist was an egotistical jerk, but even as I pulled myself out of that very bad place, no one ever named it and told me that I wasn’t the only one.

There’s a danger in this lack of discussion. I suspect that teenagers aren’t the only diabetics vulnerable to diabulimia, and I suspect that other chronic and autoimmune conditions have equally dangerous potential when we stray from medical advice – I’m looking at you, opioid addiction.

Don’t get me wrong. Being able to understand your body and manipulate your treatment can be vital to living your best life, but there are many paths you can take and not all of them are healthy. If your mind isn’t healthy and you are suddenly handed a tool you can use to get you what you think you want, like an “ideal” body weight, it’s just so easy to take the unhealthy path.

A good provider and a good therapist may have been able to keep me from that path, or at least shorten the duration. If we had known the danger, if we had been able to put a name to it to understand it, we would have been able to see the path out of the woods. It’s a lot harder to remain in a dark place when you can see a path toward the light.

What Happens If They Don’t Do The Right Thing?

Last week, I wrote about some things a former employer did – or rather, didn’t do – that violated Reasonable Accommodation laws that protect people with medical conditions. Repercussions from such misbehavior can be far-reaching and harmful.

Upon starting a truly horrible project with a hostile work environment in a dangerous location, the first thing to go was my exercise regimen. I held on for about a month, losing sleep to exercise since I no longer had time with my 1.5 hour commute each way. I didn’t feel it much at first, but my blood sugars started to rise.

The next thing to go was my meal plan. I no longer had time to carefully plan meals and calculate nutritional information. At first, I used frozen and prepared meals to stay on track, but that became expensive and a nutritional challenge. There is no way to track what’s in prepared food  any more than there is to track what’s in restaurant food.

Those two things together slowly eroded my blood sugar control, but I was too tired to keep up with monitoring more and increasing my doses of insulin. After about six months, I began to gain weight. With the weight gain came increased insulin resistance, which called for greater and greater doses of insulin.

I no longer understood my body’s relationship with my conditions.

Once I crossed that particular line, it became a game of tag. I chased after high blood sugars with high insulin doses, confused why I was so high. Or not since I wasn’t controlling my food intake. Every once in a while I would catch myself -- exercise a few times in a week, bring my blood sugars down for a few days – and gain 10 pounds in the process (which happens when an out-of-control diabetic brings themselves under control).

Twenty months of this rollercoaster can be damaging physically and mentally, but the impacts might not show up immediately. Here’s what has manifested in that short time: Since I have caught myself three or four times in my endless game of tag, I have gained 35 pounds, which means my damaged systems have to work much harder for basic functionality. The insulin I need every day has increased by over 100%. I have little spells of vertigo and nausea often enough to notice. I have had to quadruple my blood pressure medication. I have lost 25% of what kidney function I had. I hope that the lab results are temporary, maybe due to dehydration, but I don’t know.

As I struggle to gain the advantage over my own body, I reach for tools that might help: the latest technological advances in diabetes care, meditation, and journaling how I feel during the day. But these are external tools. I have to figure out how to fix the inside with inside tools.

I’ll be honest. I haven’t been this out-of-control for 20 years. It’s scary and depressing. But I keep coming back to the simple fact that this likely wouldn’t have happened if my former employer had followed the law.

But perhaps I can help you avoid my mistakes.

Take Action to Protect Yourself:

• Speak up. Know that you are allowed to ask for what you need, and that your employer can’t share your medical information without your express permission.
• Know your rights. Employers with more than 15 employees must comply with the Americans With Disabilities Act, which is where Reasonable Accommodations (RA) laws come from.
• Call for help. The Equal Employment Opportunity Commission is the government agency that oversees RA violations. If you have made reasonable accommodations requests to an employer that refuses to act, you can call their hotline.
• Consult an attorney. If you’re not sure whether you are have a case, call an employment attorney. Some offer a free initial consultation, but many will charge an hourly fee (No retainer should be required unless you hire the attorney to pursue a lawsuit.)