I’ve been nominated for a WEGO Health award! (But I need your help)

Please help me use my voice to influence healthcare! I’ve been nominated for a WEGO Health Patient Leader Hero award, but I need endorsements from YOU. It’ll take 2 seconds, and mean an incredible amount to me. Click here, then click the “Endorse Lala Jackson” button. 

WEGO Health Awards connect the healthcare industry with top patient influencers. By endorsing me, you let healthcare companies – insurance, medical, advocacy, wellness brands, etc. – know that I’m a person whose voice is worth listening to in the health space. You know this is my jam, and I’d really appreciate your help to make these relationships happen for me.

I was diagnosed with type 1 diabetes when I was 10, in 1997. I started meeting with local congress people through JDRF’s Promise to Remember me campaign, and traveled to DC with ADA when I was 17 to speak to lawmakers on the hill. My being a “bulldog” (ADA’s head of government relations at the time’s word, not mine lol) made it so an important bill got signed to allow kids with chronic illness to better and more safely take care of themselves in public school.  Continue reading “I’ve been nominated for a WEGO Health award! (But I need your help)”

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What you focus on, grows. (aka, maybe your perspective sucks.)

Imagine what you’re doing to your brain if, for days, weeks, months, years, you are repeating the story – I am sick. This is hard. I’m tired. Everything hurts.

Imagine how much it fucks with your brain to HAVE to repeat that story to doctors in order to get them to believe your symptoms. To explain to your friends and family, over and over again, why you’re not up for doing XYZ thing.

Imagine how much, in the struggle to know your experience is valid, that this isn’t just in your head, that what you’re going through is real, you have to ground yourself in that reality.

In having to tell your sickness story over and over again just to be seen, heard, or understood, how many times have you emphasized to yourself just how sick you are? Continue reading “What you focus on, grows. (aka, maybe your perspective sucks.)”

My superpower is transparency

Speech HugVideo from my keynote below! This past weekend, I had the really wonderful opportunity to give a closing keynote at the Students with Diabetes national conference. I spoke about the superpowers we gain from the challenges we go through. I shared some stories from others and a few of my own –

– At the start, I taught hula, because that’s how I wake people up at 8:30am on a Sunday.

– At 12:34 I tell a story about how my mom taught me to use my superpower of voice.

– At 20:30, while talking about the superpower of vision, you’ll see why I think some of my superpowers are transparency and vulnerability, because I share an incredibly tough and personal story from last year.

– And at 42:02, Continue reading “My superpower is transparency”

Diabetes + the inevitable eating disorder

Unpopular opinion time – I think having type 1 diabetes is a package deal with at least a low-grade eating disorder.

Even if most of the time we can have a healthy relationship with food, there are always the intense times when all the counting we did just didn’t add up and everything goes wrong. I know many of us have had the thought of “type 1 diabetes would be easy if I just didn’t have to eat.”

I’ve certainly had days when, after a week-long blood sugar roller coaster, I just gave up. It’d be water for the day because I could (usually) count on that to not affect my blood sugar, which I just couldn’t deal with anymore, but then after 20 hours of no food I snapped and ordered phad thai because fuck it.

Or, with a major low blood sugar that had me to the point I was shaking on the kitchen floor and could barely see, I would shove 4 sandwiches, a half-jar of nutella, and 6 packs of fruit gummies into my mouth before I felt like I wasn’t going to die. Continue reading “Diabetes + the inevitable eating disorder”

Why I’m not talking about being sick anymore.

A few days before my first book published, I found myself suicidal for the first time in my life. I’ve had rough times before, but I never before knew what it felt like to truly want to give up until that moment. That moment terrified me.

In a few years, I know that I will look back on that early morning – standing in the shower with my hand on my heart, shuddering in sobs until my back muscles ached, trying to tell myself that I was okay – and see it as one of the times when I got knocked down but got back up again. Per my own book, it’s what I’m in the practice of doing – getting knocked down. Getting back up again.

But that morning, I was just knocked down. Exhausted. Feeling broken. Continue reading “Why I’m not talking about being sick anymore.”

Four ways to love a messed up body.

Here’s the backstory; the four ways – how is a bit below. My body is constantly killing pieces of itself off. When I was ten, my immune system attacked my pancreas and killed off the beta cells that create insulin, the hormone vital to breaking down the food you eat into fuel for your body.

In my twenties, it decided to start treating the food I ate as foreign invaders, everything I ingested setting off the immune system response squad and leaving me in joint pain and nausea spirals.

At thirty, it’s developed a weird need to constantly break down my muscle fibers like an Olympic weightlifter and, no matter how much I try to coax it that we are not, in fact, aiming for any gold medal, my body seems to think that it needs to act like it’s training for the podium in our sleep. My shoulders are in a cycle of freezing, draining the fluid that allows me to reach and bend to the point that my joints lock up, then – months later – magically deciding we’re done with that and granting me motion again.

The cycle is frustrating but throughout it, I have to give my body credit. For all it messes up, it is trying REALLY hard to protect me. Like the guard dog who has lost all semblance of cool at the mean, scary leaf that just drifted into its yard, my body seems to have no idea that it’s in major overkill mode. Its intentions are good; it’s just supremely bad at its job.

In my early twenties, all of this overzealousness led to almost 60 pounds of weight gain. Continue reading “Four ways to love a messed up body.”

Sick doesn’t equal weak.

 

It’s been really interesting to watch how some people react to the idea of being sick, particularly when it comes to mental and chronic health issues. Having a body that doesn’t quite work the way everyone else’s does isn’t weak. It’s the most normal damn thing there is.

No one’s body works the same as anyone else’s. Some of our quirks are a little more pronounced than other’s, sure. But the same way someone has freckles, my pancreas doesn’t produce insulin. The same way someone has a thumb that bends all weird (you know what I’m talking about), my brain doesn’t produce enough serotonin.

It doesn’t make me weak. It makes me human.

It doesn’t make YOU weak. It makes you strong as fuck. Continue reading “Sick doesn’t equal weak.”

How to feel better today

I used to be that person who woke up at 5am, wrote morning pages, did yoga, drank 32 ounces of cold water, and was in my home office seat at 9am ready to go with gusto. I have not been that person in a while. Extensive morning routines can be exhausting and unsustainable, but there are a few key things I really try to stick to because they make such a massive difference.

In this video, I go into the two most fundamental things to make sure I stay in the mindset I want throughout the day.

 

How about you? How do you start your day so that it’s your best? What are the practices that keep you in the mindset you want to be?

When my doctors don’t listen to my pain.

ONE
Before I was diagnosed with type 1 diabetes at age 10, I had been sick for months. Not eating, downing gallons of water and soda every day, lethargic, sleeping as much as possible, peeing every 30 minutes. In the last month before diagnosis, as I rapidly lost 30 pounds (on a 5’2″ frame), multiple doctors told my mom I was doing this on purpose – losing weight on purpose – to better fit in with my new classmates. I actually had an incurable autoimmune disease but, because I was a preteen girl, multiple doctors assumed I had an eating disorder. When I was finally diagnosed – by a nurse, as I was carried into the emergency room at 4am on Thanksgiving morning – I was likely less than hours from a permanent coma or death from severe diabetic ketoacidosis.

TWO
When I broke my ankle in 3 places while hiking when I was 26, I called 911 from the trail. I told them my ankle was broken (it was visibly broken – bone at odd angles and everything). They kept on insisting it was sprained. They took an hour to find me on the trail. When the EMTs walked up – and I mean SLOWLY walked up – as soon as they saw my ankle they sprang into action. “OH SHIT. Shit. We should’ve brought you pain meds. We didn’t bring the stretcher down with us. Can you hop?” Three places. My ankle was broken in three places. And I told them that. And they didn’t listen. Continue reading “When my doctors don’t listen to my pain.”

What my fibromyalgia feels like.

While not exhaustive, this post is meant for you – the person who is trying to figure out exactly what’s causing you so much pain, the person who is looking for answers after a fibromyalgia diagnosis, the person who is trying to find better ways to care for your body.

I’m going to try to be as thorough as possible and share what has helped me, but different things can help you. Do your research. Consult doctors and wellness professionals but know that you know your body best. Look into patterns. Keep food and activity journals.

Just like with my type 1 diabetes, my fibromyalgia is a game of data. I have specifically engineered my life – what I eat, my activity levels, my exercise, and more – to gain control of my health. You can too (and no, I didn’t just meant to sound like a motivational poster. I just legitimately know that you got this. It’s hard, but you do.)

On my worst days, noises cause me pain. I’ll hear a car horn blaring and it feels like every nerve ending in my body has been set off. I’ll try to tense and release my muscles – my calves, my thighs, my forearms – as a distraction, but it’s like the sound waves are reverberating through my body and there’s nothing I can do to stop them.

On my best days, it’s like I’ve never been sick. The human brain is a wonderful thing and tends not to hold on to pain if we train it to do so. People will ask me how often I have pain flares and I can cheerfully answer, “Oh! Not more than, I dunno, once every few months? It’s not awful.”

In reality, I have pain and inflammation flares once every few weeks. Some are worse than others. Sometimes I’ll just wake up with pain – a lulling ache in my muscles, sharp pains in my joints and the typical fibromyalgia pain points (all of which flare for me) – feeling foggy and lethargic, my brain chemicals doing everything but helping my mood, but my symptoms will level out by midday and I’ll be back to feeling like myself. Sometimes the flare lasts a month or more and I’ll be working from bed most days, willing my joints to stop feeling like they’re on fire, avoiding eating for as long as possible because anything I consume seems like it sends me into further inflammation. Continue reading “What my fibromyalgia feels like.”