It's A Start

Over the last couple of years, I have been fighting the weight gain that accompanies out of control Type 1 diabetes when you get it back under control. In the past two years, I have gained nearly 50 pounds due to some pretty big circumstantial and psychological stressors. I have often felt desperate and helpless against the onslaught of this kind of weight gain, and there have been times where I have had to make a conscious choice not to do things that would be overtly harmful to my body, like allowing my blood sugars to stay high so I don’t gain weight. (The weight gain happens when your body goes from high blood sugars that don’t allow you to absorb all the food you are eating to good blood sugars, where your body absorbs every calorie. Ten pounds every time.)

Read More

Personae

If you’ve ever seen that word before it was probably at the beginning of a cast listing for a play, which only makes sense since it’s the plural of persona, “a role or character adopted by an author or actor.” But it has also come to mean the face we show the world. Without a public persona, there would be no privacy. Everyone we know would know everything about us. My colleagues see a version of me that is completely different from the one the friends I grew up with see. And, of course there is little or no persona with family. Hard to hide anything from the people who were there to witness you develop all your flaws.

Read More

Everyday Drama

I was all set to write my article this week when something threw me for such a loop that it needed to be aired. I am used to my fair share of difficulty within my healthcare universe – insurance reimbursements gone missing, fellows that argue over test results, etc. – but I am not used to my medical life bleeding into areas completely unrelated. Let me explain.

Read More

....Or Not

Last week, I encouraged you not to sacrifice the things you love to accommodate your condition. Now I am going to play my own Devil’s Advocate. I have cataracts. Large central cataracts, a gift left over from my treatment for meningitis. (It happens sometimes when you take high doses of steroids.) Back then, it was just something in my medical file. My doctor once told me that they develop about as slowly as sand moves. Slow as that is, eventually the sand does move.

Read More

Oh, The Concessions You’ll Make

If you have a chronic condition, you are immunocompromised. If your immune system worked properly, it never would have attacked whatever system it did until said system didn’t work anymore. That poses a problem for us during cold and flu season, or any season, really, whenever someone you spend time with – friends, family, colleagues – is sick. Even a little sick. If something is going around the office, it takes me three times longer to shake it than it does for everyone else.

Read More

In The Eye of the Chronic Beholder

I hate my body. Well, that’s not fair. It’s more of a love-hate thing. I love that it’s resilient enough that I am still alive – truly amazing! – but I hate everything else. There is the exhaustion that drags at me any time my blood sugar that isn’t within a fairly narrow range. There is the nausea from damaged nerves in my stomach. There is the occasional, but crippling pain that shoots into the base of my skull from my shoulder, a leftover from my paralysis. I could go on, but this is not the time for what my family calls the “organ recital.”

Last week, I started seeing some articles about “Snapchat dysmorphia”, a condition where people are starting to get plastic surgery so they can look like what their Snapchat filters make them. This shouldn’t be a shock in our social media society, but it is one of the saddest things I have ever heard. It’s just a leap (bigger than a step) too far.

Most everybody has something about their bodies they want to fix, but chronic conditions make it worse. When you are seriously ill and not treating your condition helps you suddenly fit society’s physical ideal, or at least your perception of it, it is harder to take action to bring your condition under control. (How many of us are not so upset to lose a couple of pounds if we have to suffer through the flu?) When you take medication that makes you put on weight or causes hair loss or affects your skin, it is tempting to skip it, even at the risk of your condition’s stability.

I’m no different.

When I lose control of my diabetes, getting back in control means automatic weight gain. Going from not absorbing everything you’re eating to absorbing every crumb will do that. If you want a healthy and stable diabetes monster, you have to just accept it. Exercise can help mitigate the weight gain, but not all the time. In the simplest terms, if I am unhealthy and I want to be healthy, it means I am going to get a little bit fatter. And if it’s an improvement I can’t maintain, I will get a little bit fatter every time I get my diabetes under control.

The most dramatic example of this was my initial diagnosis, when I gained 60 pounds in six months because I had basically been in a state of starvation, and the less than stellar medical providers available to me wouldn’t work with me to appropriately adjust my diet plan. (I hadn’t developed yet into the advocate that would have ignored them and done what felt right to me.) This is how I developed a diabetes-specific eating disorder.

At least I was lucky on the social side. I never lived in a house where there was an emphasis on fashion or beauty. My mom was beautiful, but she was the kind of woman who, on the rare days she used makeup, would use her lipstick as blush. She had Crohn’s disease and could never quite get off the Cortisone that made her gain weight. I suspect it bothered her, but I can’t remember hearing much about it. I also can’t remember ever seeing a Cosmo or Vogue in our house, ever. There was zero pressure from my family to conform to society’s dictates. Even so, I thought I was fat even when my BMI said I was not even in the overweight category.

AdobeStock_185242088.jpeg

Luckily, my body image ideal has evolved since I was a teenager. I don’t want to be thin like I was then. I want to be strong, like I was before my unfortunate work situation a couple of years ago knocked me off my regimen. When I was exercising regularly and my progress was tangible. When I could run intervals for the length of an entire TV show, it gave me confidence and a sense of purpose that leaked into other facets of my life.

I know it’s not easy to change your perception when we are surrounded by the shallowness that social media society causes. It’s so tempting to compare ourselves to the people we see in magazines or on Facebook, but those are only snippets of their ideal, not their whole lives.

So try not to do that. We’re outside the norm already. Just going to work every day – or every other day – makes us stronger than the average bear. And we understand our bodies in ways healthy people never will. If we try, we can recreate our physical ideals based on where we want our conditions to be (the parts we can control). Forget social media. Why not let that be our new standard of good and beautiful?

Silent and Unsung

Let’s talk about the caregivers. Not all chronic and autoimmune conditions require a caregiver, but a lot do, especially at the beginning. No matter what the diagnosis, it is a big, traumatic adjustment, and it’s always better with someone to lean on during the days when you just don’t want to deal.

Silent and Unsung.jpeg

My entire family served as caregivers when I was little. I couldn’t walk because of the effects of b strep meningitis. They had to get me stuff, feed me because one of my arms didn’t work, and take me where all six-year-olds need to go – to school, outside, to the doctor. Even my 2-year-old-brother gave to the effort in that he was (unintentionally) marginalized when he should have been the center of attention.

When I was a teenager, I didn’t want help. I pushed everyone away until I couldn’t anymore. That didn’t mean my family wasn’t caregiving.

Sadly, I had the chance to give back a decade later when my mom was diagnosed with pancreatic cancer, which, thus far, is always a death sentence. I was lucky – I was between college and beginning a career, so I was able to focus on her completely. Both she and my dad told me to get a job, but if they’d really meant it, they would have pushed harder. For 11 months, I didn’t do much but spend time with her, take her to doctors’ appointments, and care for her as she deteriorated. It never occurred to me to bring in outside help, even as she got to the point where she struggled to bathe herself and use the restroom on her own.

I couldn’t let anyone else see her like that. I think we both felt that she had done for me, so it was ok, but anyone else would have dented her dignity too much. If she hadn’t been caretaker for my diseases, I’m not sure she would have let me. I think a lot of caretakers think they owe it to their loved ones to take care of them, and expense notwithstanding, would feel guilty if they didn’t do it themselves. I felt guilty for leaving the hospice for a couple of hours on my birthday.

Eleven months is not a long tenure for a caretaker. It didn’t tax my time since I didn’t have a job. But watching someone I loved so much dying was unbearably stressful and emotionally taxing. Don’t get me wrong. I don’t regret a minute of it, even the two weeks I spent on a cot in hospice with her (over my 24th birthday) and telling the truth when she asked if she was dying. (That is probably the hardest thing I have ever done, and I got yelled at for it, but how could I have done anything else?)

By the time we buried her, I could barely move. I called one of my closest friends and ran away to Texas. I didn’t need much attention from her. I just needed to be away. Two weeks passed quickly, and I wasn’t ready to go back, so I doubled my stay. Even after that, I was still tired enough to fall asleep at a Smashing Pumpkins concert.

When you care for a loved one, you don’t just go through the motions. You put everything you are into it, sometimes more than you can afford to. If I felt completely worn out after less than a year, I can’t imagine what happens to those who are long-term caregivers. Depression, anger, and guilt are all common. But there is support now. Caregivers shouldn’t feel bad about taking time for themselves, to regroup and recharge. If you do, keep in mind that everyone, including your loved one, will benefit when you feel better. You won’t be able to take care of anyone if you don’t take care of yourself.

Paving the Road

We all know where good intentions can lead. I thought about that while reading about Seattle’s new ban on plastic straws.

Paving the Road.jpeg

There is a growing global wave of bans on single use plastic products—straws, stirs, utensils – that aren’t often recycled. Policymakers want to fix the awful issue of plastic in the oceans, but there are people with physical disabilities who use plastic straws to drink because they can’t lift a cup or if they don’t use a straw, they run a significant risk of choking to death.

At least in Seattle, there is an exception for people with medical conditions who require straws, but it is not well publicized and suggested alternatives are not viable. The most likely situation is that restaurants and other watering holes just stop carrying them. Most of us with conditions have to carry supplies – medication, equipment, etc. – with us, but we all forget. I have run out of insulin often at work because I didn’t know I didn’t have enough to get me through the day, and keeping a medication on premises that expires in a month doesn’t work that well. For something as vital as getting a drink, this ban adds significantly to the burden we already have.

Difficult as the straw ban will be, it pales in comparison to the possible impact of new policies intended to address the opioid addiction crisis. I am not going to speculate about the intentions of the manufacturers who lied about how addictive opioids are or the doctors who took money to prescribe. Hopefully they will be held to account like cigarette manufacturers were when we discovered they had done something similar.

No, the problem we need to address is what states perceive as a solution. Many are instituting measures that would limit providers’ ability to prescribe. On the surface, it sounds like a logical solution. But the unintended consequences could be severe.

  • Increased administrative burden: office and hospital administrative staff are already stretched thin because of the cost of doing business. This would stretch them even further.
  • Stigma and restrictions: it’s all very well and good to be wary of a class of drugs that has caused so much misery, but there are plenty of patients who have a legitimate need for strong painkillers to treat severe pain. If the patients who need the medications can’t get them, they will be reduced to a state of existence, as opposed to living a life. And terminal patients, for whom palliative care is vital for maintaining dignity and comfort – addiction is not really an issue if you have weeks or months to live-- will wait in misery for death to come.
  • An excuse for industry: insurers and pharmacy benefit managers (PBMs) hardly need another reason to delay or deny filling expensive prescriptions.

I have not heard a good solution to this one. Usually, I adhere to the theory behind our legal system (admittedly overly idealistic) called Blackstone’s Formulation, that it is better to let 10 guilty people go free than to imprison one innocent person. Translated for this situation, that would mean anything other than a solution that would punish the chronic pain sufferers for their conditions. I can’t make that work here since those addicted to opioids would be cast as the “guilty” ones. But they are victims, too, victims of a system that abdicated its purpose and its duty to put profits over patients.

So, what can we do? The only thing that comes to mind is increased patient engagement. We are headed in that direction, but slowly, too slowly to mitigate the negative effects of this latest slate of legislation.

I don’t think we as patients can wait for them to find us. At a few of the conferences I’ve attended, I’ve heard industry representatives speak about how difficult it is to find patients who want to be involved in research. This seems like an odd disconnect to me, as I am very aware of how vocal the online communities are. I bet nearly all of us, if given the opportunity to improve some part of the process/drug/system, would jump at the chance.

So, in the spirit of prevention and planning ahead, pick the entity (insurer, legislator, pharmaceutical company, etc.) you think is the biggest problem, and look up their public affairs office. Write or call or email or tweet with a message that if they ever decide to address X problem, you, as a user, would be happy to assist. Let’s see what happens!

Drink Up

Drink Up.jpeg

Ah, water. The most constructive and destructive force in nature. Too much and it will destroy your life (hurricanes, sinkholes, floods). Too little and it will, well, destroy your life (drought, wild fires). It’s all about balance. The human body just can’t live without it.

Dehydration is a danger to everyone in the summer, but especially for those with chronic conditions. It can cause, worsen, or be a symptom of heart disease, hypoalbuminemia (too much albumin in the blood), hyper-/hypothyroidism, cancers requiring a certain course of chemo (cisplatin), and my own lovely monsters, diabetes and kidney disease. If I’m outside too long, I’m dehydrated. If I travel on a plane, I’m dehydrated. If I get sick to my stomach, I’m dehydrated. If my blood sugar is high, I am dehydrated. Around 66% of adult bodies are water, and if we don’t replenish what we use, it can make our conditions worse.

Every year, there is a host of articles warning about the dangers of dehydration, especially in the summer. But what happens if you actually get dehydrated?

Dehydration is a sneaky little devil. Even a little imbalance can cause you to feel spacey and clumsy. Inside your body, your blood thickens, which makes it slow and sluggish, so your heart rate rises. Your body starts conserving water for the most necessary tasks like blood flow and cell function. By the time you feel thirsty, you are already dehydrated.

And it’s not just a matter of being thirsty. Cottonmouth, unexplained exhaustion, and not needing to pee for an unusually long time are all pretty well-known symptoms. But in my experience, dehydration can also cause headaches/migraines, muscle cramps, and a weird, extended numbness in your extremities, like your hand fell asleep and won’t wake up when you shake it. That time I didn’t hydrate properly for exercise, I had the worst cramps I have ever felt. I felt it coming, and just wanted to finish the last few minutes. By the time I got off the treadmill and grabbed water, I couldn’t even sit up straight. I felt nauseated as I slowly sipped water. It didn’t let up completely until over 20 minutes had passed, and that was in an indoor, controlled environment. I have never made that mistake again.

How do you treat it?

Sometimes it’s not as simple as drinking a glass of water.

Water is great, but it may not be the best or fastest treatment, at least by itself. There is a reason “smart” drinks and sports drinks are popular with athletes. They have electrolytes. Electrolytes are a collection of salts -- calcium, magnesium, potassium, and plain old table salt – that help regulate water flow in and out of your cells. A banana can help (but not too much – too much potassium can mess with your heart) and if you don’t have one of those enhanced options close when you need it, you can add salt and/or lemon juice to tap water. There is also Pedialyte, which comes in popsicles!

While you are treating dehydration, you also might want to avoid caffeine, alcohol, sugary drinks (and foods), and anything overly salty, like soy sauce, as they will just work against you.

In the most extreme cases – you can’t tear yourself away from the bathroom due to one end or the other – it’s time to visit the emergency room or urgent care center. They can hook you up, literally. A few hours on IV saline (diabetics out there, make sure it’s the kind without glucose), can work miracles.

Even when you start feeling better with treatment, don’t be fooled. When I asked my doctor about it last time I had this issue, he said that it takes a day or two to recover completely. Don’t be surprised if you are completely wiped out for one or two days.

Of course, the best treatment is no treatment at all. It’s prevention, like all those articles tell you. Keep a bottle of water with you if you’re going to be outside (especially in the summer heat) or away from somewhere you can easily get a drink. Throw a few bottles in your car or your bag. Your body will thank you for it.

Helpless

Most of the time, I do ok. Even as I struggle to be where I want to be medically, I still know why my blood tests come out not where I want them: it’s something I ate or exercise I didn’t do. There are times when I don’t know. A few times here and there are ok. Well, not ok, but I can deal with them. However, if it goes past a couple of days in a row I start to feel helpless. Not knowing what’s causing it, and not being able to get my blood sugars down feels like I am not in control of my body. It’s not pleasant.

Helpless 2.jpeg

It’s a feeling I have had more and more lately. But not because of my condition. Because of our political situation. I knew this administration was going to be rough, but I expected Congress and the courts would do their jobs and check executive power. They are failing miserably. That means that a lot of rights and protections are being eroded, if not outright disappearing, including protections for chronic patients. (And I suspect that living in Washington amplifies that feeling.)

I think many of us feel like there is nothing we can do. I spoke with a friend this week who wanted to talk about the latest developments. He was so frustrated after just a few minutes that he couldn’t. We had to take breaks and circle back. I could sympathize.

What he was feeling about politics mirrored what I felt with my disease. I know from experience that sometimes you need to take a deep breath and step back for a while. It must have been worse for him though—he is of the generation that worked so hard to secure our rights in the first place. I can’t imagine how it feels to have come through the social movements of the 60s and 70s, only to feel like that work is being erased in a fraction of the time it took to accomplish it.

As with a chronic condition, the important part is re-establishing that slipping control. You don’t have to start with jumping back into control of everything. Start small. For my condition, that could mean walking up the last flight of stairs instead of taking the elevator all the way or testing my blood sugars a little more often.

For my friend, I suggested that volunteering for a charity or grassroots organization might help (I have two – the Chronic Disease Coalition and the Right Care Alliance.). If you are like my friend, even an hour a week is enough to feel like you’re getting your foot in the door, like you are taking control of your little corner of your little world to help make it a little less bad. And believe me, whatever organization you choose will be happy for the help.

Don’t let circumstances, political or medical, run away with you. Take back your corner of the world through action and suffocate the helplessness instead of letting it suffocate you. If you help yourself by helping someone else, you will never be sorry.

P.S. There is one more thing you can do, of course. (If you read this column, you know what I am going to say.) Vote. We are almost through primary season, although there are still a few. Midterm elections don’t usually draw much attention, but this is different. If you don’t like how politics are making you feel, vote for someone you think will make it better. That person doesn’t have to be a perfect match to your priorities – what politician is? – but I’ll bet you can find someone who gets close. Look at their voting records (or read their platforms if they’ve never held office), listen to them speak, get a feel for how connected they are to your community, and therefore to you. Choose the one who will stand for you. There is even someone who will give you a free ride to the polls.  And to think they told you there was no such thing (as a free ride).