Dear Doctor: No Means No

"I have a new sebaceous cyst on my neck, so I can't get any injections in my neck today," I said, hopping up on the examining table. These nerve block injections had become routine; I had been getting between eight and ten of them in my neck and shoulders every week for over a year.

"What does a sebaceous cyst have to do with injections?" asked Dr. S.

I assumed he hadn't heard the part about the cyst being on my neck, or maybe he figured the cyst affected my chest or pelvic area, like many PCOS-induced symptoms do. So I repeated myself. "It's on my neck, so I can't have injections in my neck. Just my back today".

Dr. S. walked to the back of the table, brandishing a needle. I braced for pain in my upper back, but it didn't come.

"That's my neck!" I squeaked, tears in my eyes. Neck injections always sting, but the shock is what really startled me.

"That didn't hurt so bad, did it?" he laughed.

I gripped my cane and gritted my teeth, waiting for him to finish. 4 injections in my neck, now aching worse that it already had been. Some shots in my shoulders. 

I wordlessly got up from the table and left the clinic. Then the tears came.

This is the second time this doctor has given me injections in an area I did not consent to. This is the second doctor who has performed a procedure without my consent. 

All three times have given me flashbacks of being raped.

When I was raped, my ex did not accept no for an answer. He did what he wanted, for as long as he wanted, and laughed when it was over. The only way these nonconsensual medical experiences differ is they weren't in a bedroom, but a doctor's office. 

I've said this before on this blog and I'll say it again: I won't be the last survivor of rape who's triggered by an idiotic man taking "no" as an invitation. And I sure as hell won't be the last person to speak up for patients' rights, either.

The Ultimate Fad Diet

Trigger Warning: Emetophobia 

You know those crazy diets you see in the headlines of gossip magazines at the supermarket checkout? Or those wrap things all over Instagram?

Well, I didn't believe any fad weight loss plans worked. Not until I tried a brand new one. I lost 35 pounds! This revolutionary new lifestyle is called the Mysterious Undiagnosed Abdominal Disease, or MUAD for short.

The cool thing about MUAD is that you can eat whatever you want, and still drop pounds. I stick to a mostly healthy diet of veggies, fruit and whole grains, with the occasional venti white mocha or huge slice of cheesecake. 

Here's how it works: You eat 3 balanced meals a day, plus lots of water and a couple light snacks. And then... you throw up. Violently. Every single day, and sometimes more than once. You get the shakes, you feel hot and clammy, and you think you're going to die. Your abdomen is excruciatingly sore, 24/7. Even the slightest touch makes you flinch and tear up. You can't leave the house without a few thick plastic bags, a ton of Gravol and an intense fear of dying of embarrassment. 

But who cares, because you're losing weight! Right? 

Wrong.

The truth is, I don't believe in fad diets. I believe they're bullshit. They're expensive, they fuck with your self worth, and the majority of people who lose weight on them gain back all the weight, and then some. 

I do have a Mysterious Undiagnosed Abdominal Disease. And I did lose 35 pounds in 6 months. But it wasn't on purpose. And I wouldn't call this a revolution. More like a curse. 

I've cut down on caffeine, dairy and spicy foods. I drink tea and clear sodas to calm my nausea. I take Prevacid to keep my stomach acid at bay. I've had a colonoscopy, a gastroscopy, a stomach emptying test and multiple abdominal ultrasounds (all of which show absolutely nothing). 

I'm tired of being in pain. I'm tired of the way this illness has affected my career and social life. I'm tired of the impact this illness has on my other illnesses. 

But all my doctors see is that I've lost weight. And apparently that's a victory. Even when it's not the goal. Even when it comes at so high a cost.

I'd celebrate, I guess, but... I'd rather stick my head in a garbage can. Again.

The Truth About Chronic Illness: A Poem

There will be times when you have to live off ramen, poptarts and take-out because you don't have the strength to cook.

There will be nights you can't sleep because the pain is so bad, and days you can't stay up because you're so tired.

There will be days you'll wish the ground would open up and swallow you whole.

There will be years you have to rely on welfare, or savings, or the kindness of others.

There will be times you feel guilty for that.

There will be countless doctor's appointments. You'll be weighed and questioned and pricked with needles. You'll have x-rays and blood tests and ultrasounds. Lots of meds. Lots.

There will be invitations you'll have to turn down, parties you'll have to leave early, brunches you'll have to cancel at the last minute.

There will be times people won't understand. And you'll feel awful about that.

There will be weeks you can't leave bed, days you can't leave the house, mornings you can't shower or brush your teeth. You'll feel unkempt and pathetic and ugly.

But

You'll think to yourself, 

"I'm stronger than ever before.

Other spoonies understand me.

My family-- my true, chosen family-- has never left me.

And I am not my illness."

And somehow, you'll survive.

Image via

Just keep fighting.

Every day, I pray my pain will go away and this dark, increasingly heavy cloud of fatigue over me will dissipate... but it doesn't. The more tired I am during the day, the more my insomnia plagues me at night, and I eventually pass out, sleeping all day. Then I can't fall asleep the next night. It's a never-ending cycle.

And yet, optimist that I am, I keep hoping my fatigue will magically go away, my doctors will find a cure for my pain, I'll 'snap out of' this, I'll drink a few cups of coffee or take an Advil and be totally fine.

But chronic pain and fatigue don't just disappear.

It's a daily struggle to walk the very thin line between accepting we have an ever-present disability, and allowing that admission to derail our attempts to live a fulfilling, happy, meaningful life. 

I know the struggle is worth it, deep down. Even on days like today, when I've been up for almost 40 hours or when my joints ache so much I sob or when I can't stop pulling my hair out.

Just keep fighting.

I shed people like snakes shed skin. I'm not proud of it.

I'm so tired. All the time. I can't keep up with the people in my life, and I'm afraid they'll decide they don't want to be part of it anymore. Sometimes that's exactly what happens.

Days feel like weeks until I finally fall asleep. Then I sleep the week away, and find everyone's moved on with their lives but me. I'm stuck in a constant fight between insomnia and fatigue, too exhausted to do anything at all.

Relationships take work, and I'm willing to put in the time and effort. I'm just not (always) able to. My nearest and dearest understand, but I feel like an awful person when I'm not able to give them that.

There's a very thin line between cutting yourself slack and indulging in self care, versus using your illness as an excuse to eschew responsibility. Illness is a reason for falling behind, not an excuse to stay there. I know you know that. I know I know that. And I know we're careful not to cross that line.

How do you pick up the pieces after an especially tough couple weeks of unrelenting fatigue?

(note) Title inspired by two lines of It's Love by The Jane Austen Argument.

10 Fun Things To Do This Fall (Whether You Have Fibro or Not!)

My pain has been really bad for the past few weeks, so I've been down in the dumps (hence my not writing as often as usual). Fortunately, Autumn is here; the new season is an excellent opportunity to renew enthusiasm for the little things in life. Goodness knows that in coping with chronic illness, a little positivity goes a long way.

So this Fall, why don't you...

1 Take a hike. Tread on crisp, crunchy leaves and admire the foliage's breathtaking colour.

2 If your body can't take a 10k, just get outside. A leisurely nature walk or sitting in a park may be more your speed (I know it's mine-- at least for now!).

3 Head to an apple orchard. Few things say Fall like hot apple pie and picking your very own Granny Smiths.

4 Make nature-inspired crafts. Try leaf rubbings, carving pumpkins or painting with fall colours.

5 Flaunt Fall nail art. Head to your favourite manicurist, or try a DIY mani. Ideas: Oxblood polish, black cats or cozy plaid.

6 Exercise outside. Since I have fibromyalgia, my doctor recommends I do stretches daily. I plan to take advantage of crisp Autumn mornings by taking my workout outside.

7 Upgrade your fall wardrobe with chunky knits, tall boots and fuzzy socks.

8 Donate non-perishables to a local food bank. Sometimes when your own pain is bad, helping a stranger can help you feel better. And since Thanksgiving is coming, food banks need all the help they can get.

9 Embrace an Autumn beauty trend, like the smoky eye (a classic), or black lipstick (for the daring).

10 Bake cookies. Bonus if they're shaped like cats, leaves or pumpkins!

Do you have anything exciting planned this Fall?

Don't Wish You Could Stay At Home

I'm an optimist. I'm usually all glitter and kittens and rainbows and smiles. I usually think positive about my disability. But even the most optimistic of us have bad days, pessimistic days, 'can-this-possibly-get-any-worse' days. Sometimes, having a chronic illness is downright miserable. 

"I work two jobs and go to school full-time and help raise my little sister. What do you do?"

"You work from home. Can't you like, spend most of your time in bed?". 

"Chronic Fatigue? You're just tired. Everyone gets tired!"

"Well maybe if you took better care of yourself you wouldn't feel so bad".

"I work full time and clean the house and cook most nights. I have an illness too, but I don't have the luxury of staying home and doing nothing like you do".

Most of the time, I brush these comments off. Or I argue my side of the situation ("I'm the one experiencing this. You can't tell me my experiences are wrong, that I don't understand what I'm going through"). But sometimes they hurt, and make me feel awful about myself. I wonder, could I live a normal life if I just push myself? Am I making a choice when it comes to staying home as often as I do? 

Rationally, I know the truth: I push myself to exercise and eat healthy and be productive. I've read all the studies and take all my meds and see doctors regularly. I am doing the best I can. Sometimes rational thoughts (read: the truth) just don't register.

All I can do on days like today is practice Radical Self Care and tell myself tomorrow will be better. Because it will be.