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.)”

The case for weighing yourself every day.

weighI weigh myself most mornings to better understand when my body is responding to something with inflammation, or when my body is responding well to something I’ve added to my routine.

FULL DISCLOSURE: I was only able to start doing this in a mentally healthy way AFTER I identified that my body was having massive issues with inflammation as a result of food I have an autoimmune response to but didn’t know. When I first went to a gastroenterologist to try to explain that this is what I thought was going on he said, “No, you’re just fat.” Continue reading “The case for weighing yourself every day.”

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.”

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.”

I watched the bullshit documentary What the Health so you don’t have to.

TL:DR – this goddamn documentary kept me in a state of rage for about 30% of the thing, rolling my eyes for another 45%, and mumbling “fine, whatever, that’s valid” to myself for the other 25%.

I’ve yet to find a nutrition documentary that I think accurately represents the topic because Do-Your-Own-Research-Because-Every-Human-Body-Needs-Specific-Kinds-of-Fuel-and-You-Must-Learn-Whats-Best-For-Yours wouldn’t sell. These documentaries are designed to shock you because that’s how they get watched. That said, What The Health was particularly full of inaccuracies.

What set off my TOTAL bullshit alarm: 

Continue reading “I watched the bullshit documentary What the Health so you don’t have to.”

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.”

What it’s like to watch people die from your disease.

My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy-me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down. When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple mistakes – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Miscalculating how much medicine or food you would need when you’re out and about. Or, also commonly, from not having the money or resources to afford what you need to survive. Continue reading “What it’s like to watch people die from your disease.”

On being an empath.

I have a habit of jumping into a project so forcefully, and being so energetically open while I do so, that I throw myself completely off balance. For me, not only does that manifest mentally and spiritually – I get horribly drained – but physically. My health dive bombs.

Different schools of thought have defined it differently. Fair warning: I am a hippy, woo-woo, indigo child who also lives in the science-based, western medicine world. I see all of these things as essentially the same; just different definitions of the same things happening.

(no, this doesn’t mean I think that being energetically sensitive caused my type 1 diabetes. That was my immune system attacking my pancreas. But I do believe each of these things deserves equal attention.) Continue reading “On being an empath.”