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.”

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Let’s talk about birth control.

About three years ago, I chose to go off of hormonal birth control. I hadn’t had a long story with it – I never used it in college; I relied on condoms. After college, I went on the pill and then switched over to Depo Provera shots for two years. During that same period of time, I gained about thirty pounds, also went on depression medication, and experienced a massive autoimmune crash. I subsequently decided to remove anything from my system that I felt could be contributing to the steady decline of my health. In a relationship at the time, we switched over to condoms and carefully paying attention to where I was in my cycle to make sure we stayed #TeamNoBabies.

I’m 30 now. I’m not in a stable long-term relationship and the way my finances and life goals are set up, I don’t want to have a kid right now. But I do know that I’m in a much better mental state, far healthier, and stable *enough* that were I to get pregnant, I would choose to go ahead and have the kid, and that’s not a life-experience I want to accidentally put myself through right now.

I never really had the sex talk. When I was 16, I vaguely remember my mom asking me if I needed birth control and my response being something along the lines of “OH MY GOD, NO MOM.” As I talked about in a previous post, I didn’t have sex until after high school, but there was a very short period of time between starting to have sex and – what is the inevitable when someone hasn’t had sex education since 5th grade – getting pregnant. Continue reading “Let’s talk about birth control.”

I am never naked.

If you scroll down in this post, you’re going to see a topless/nearly naked picture of me, as well as a few others that show quite a bit of skin. They are meant to challenge you to think about what I’m about to write. Please read first, then scroll if you want (but do not scroll if you think mostly nude photos of me will offend you).

I was diagnosed with type 1 diabetes at age 10. It meant that, at the age of 10, my body was no longer my own. It became the property of diabetes, of medicine, of science, of the devices it takes to keep me alive.

When I was first diagnosed and still in the intensive care unit, every part of my body was poked and prodded. I ended up with an IV in one of my jugular veins because none of the rest of my veins were stable enough to support a line. My clothes had been ripped off my body to make it more accessible to save. My necklace had been cut from throat so it didn’t get in the way. My body was just that – a body to save. Not a person. Not my own.  Continue reading “I am never naked.”

My justice is more important than yours.

Mitch McConnell, ol’ wax turtle lookin’ ass himself, is one of the major supporters of the Special Diabetes Program, a critical program that provides $150 million annually for type 1 diabetes  research at the National Institutes of Health. One great action. Check.

He also just struck down the call to get a special prosecutor or independent commission to essentially investigate whether or not our country’s government has been infiltrated by Russia. An interesting action, to say the least. Check.

He also became a new level of infamous a few months ago by uttering the words, “nevertheless, she persisted” while trying to shut down the voice of Senator Elizabeth Warren on the senate floor as she was attempting to speak out against the Attorney General nomination of Jeff Sessions, the Scar of the Keebler Elves (not my quote but I don’t remember where I saw this – let me know who to credit if you know), on the grounds that he is racist as fuck (you can quote me on that, though). Additionally, he has consistently rejected any call to actually include WOMEN when making healthcare decisions for women. To McConnell, it’s absolutely fine to not have women included in decisions about women’s bodies. Mountain of fucked up actions. Check.

mitch

Continue reading “My justice is more important than yours.”

We create these broken families.

I’m not a parent, but I am the big sister of a kid whose dad walked out on him when he was a baby so I got used to him accidentally calling me mom.

I was twelve and a half when he was born. It was a few weeks before Thanksgiving of 1999. He looked like an alien, all yellow and pallid and big-headed. I didn’t get why people called newborns cute and it was weird to know that he was an attempt-to-save-the-marriage baby so I think I probably looked at him differently.

nanyo3As soon as he could start laughing though, he was mine. He was all belly laugh, all heart. All climb-in-your-lap-and-kiss-your-cheek-when-he-wanted-something smooth. He was rambunctious and brave, all adventure and love.  Continue reading “We create these broken families.”

Quit your bullshit around money.

I want to reframe this whole Obama-getting-paid-$400k-from-an-evil-bank thing. I’ll start with a story, and then I’ll tell you why I think people’s outrage is crap.

My mom’s family was very well-to-do. My great-grandfather started a coal company in Chicago when he emigrated from Germany; that company turned into an oil company. My grandfather, not wanting to go into the family business, became a renowned cardiovascular surgeon in NYC. My mom grew up on the upper east side; my grandparent’s apartment was on 5th avenue overlooking Central Park. My grandmother (my mom’s actual mom, not her step-mom I was named after) was very high-society – lots of dinner parties and posturing to impress the “right” people. She was also a raging alcoholic, manipulative, and mean. Continue reading “Quit your bullshit around money.”

One year in NYC: on getting kicked in the back in Times Square and the beautiful conundrum that is this city.

There’s not a whole lot that can better describe my last year in New York City than the following particular 24-hour stretch.

On Sunday, October 9, 2016, I ended up at a private Alicia Keys concert in Times Square with a handful – a several thousand person handful – of my closest friends.

Alicia

Every screen was lit up Alicia – she had bought out the entire place to film a concert special for BET, promoting her new album.

To close out her set – which had included Q-Tip, Questlove, John Mayer and Nas, among others – on comes Jay-Z and they, in Times Square, every screen lit up with them switching out with classic, black and white photos of the New York City skyline, performed Empire State of Mind. Continue reading “One year in NYC: on getting kicked in the back in Times Square and the beautiful conundrum that is this city.”

Angry & Sad: Because yes, they can coexist.

On Saturday, April 8th, my friend Abeku Wilson, in his mid-30s, was fired from his job and in a fit of anger, stormed back into the gym in which he was previously employed as a personal trainer, shot and killed two people, then committed suicide. Two days later, on Monday, April 10th, an acquaintance from the same group of friends, Abeng Stuart, in his late 30s, died of a heart attack while he was driving.

The depth of grief felt by our friends, by the families of both men, and by the families of the people Abeku killed is one that I cannot begin to quantify. For us, the University of Miami community who lost two of our own back to back, the breadth of anger, confusion, shame, shock, sorrow, emptiness, and more is not one I think I will be able to describe. Sometimes there are things I just don’t know how to unpack so I’m not going to try. These were things that were things. They were dark and unfathomable until they happened.

In the days after, I put up a few posts about mental health and taking care of ourselves that I wanted to go ahead and re-share here, for the sake of them being somewhere in case someone needs them.  Continue reading “Angry & Sad: Because yes, they can coexist.”

That tricky little bastard, serotonin.

One of the most important tools in the understanding-my-brain arsenal is pure science. It makes it all more manageable for me if I know why something is happening on a basic bodily function level.

In a previous post, I talked about having a chronic mental illness called dysthymia – it’s a chronic form of depression that I’ve had since I was 12 in which my brain doesn’t produce enough serotonin. I used to manage my body’s ability to produce enough of it – since it affects feelings of well-being, mood stabilization, and digestion (your body produces serotonin in your brain and all throughout your digestive tract) – with medications called SSRIs (selective serotonin reuptake inhibitors).  Continue reading “That tricky little bastard, serotonin.”

Being chronically ill but wanting to make a difference: the balance.

Three years ago today, I spent my day in a traditional Lakota sweat lodge. Two days prior, I had walked away from my corporate job with zero fallback plan.

Already in the midst of a major autoimmune crash, I was also doing work that was breaking my soul. I had been hired as the wellness communications specialist for a 15,000-employee company. The job description was everything I loved – creating messaging and programs to support and inspire health, educating around nutrition and wellness. What my position ended up being was spinning the company’s new high deductable healthcare plan. I could’ve just created the messaging being suggested to me – “Here’s all the ways this will be great for you and your family!”

Because I’m me, I instead started digging. I started running the numbers myself. I started going back to the vendors and actuaries and asking them to give me real-life scenarios I could illustrate so people could at least plan for what was actually coming. I found that, for anyone with any kind of chronic issue – asthma, diabetes, high blood pressure, depression, etc. – this plan was going to run them into the ground financially within the first three months of the year. It was a plan designed to cover emergency needs for otherwise healthy people. It was a plan designed to save the company money, not take care of its people so they can keep doing their jobs. Continue reading “Being chronically ill but wanting to make a difference: the balance.”