Sometimes Assholes Are Right: A Fibromyalgia Life Lesson

“You are not weak. You do not have some personal shortcoming to overcome. You are sick.”

That’s the straight talk I got at the doctor’s office yesterday. And with every admonishment, I felt like my doctor was whacking me with a really hard, really stale baguette. It hurt on a basic level, like being hit with any hard object would (especially in my condition) but there was the added humiliation of knowing that I armed her with the stupid baguette.

***

I was diagnosed with fibromyalgia in October 2014 by one of the worst doctors I’ve ever had the displeasure of meeting.

He was the kind of doctor you’ll hear Spoonies talk about often: arrogant, dismissive, sometimes even combative.

After dropping the fibromyalgia diagnosis on me, he handed me a pamphlet and said “Here, you can read about it and I’ll be back in a minute.” He left the exam room.

I opened the 300-word brochure and stared blankly at the glossy pages. When the doctor returned, he told me he was putting me on Cymbalta and asked me if I had any questions. Of course I didn’t have any questions; five minutes alone with a pamphlet was hardly enough time to process what I’d just been told.

***

After a brief tangle with my health insurance provider regarding preauthorization for Cymbalta, I went on the drug.

I could write a novel about the six months I was on Cymbalta. It was just so horrible. I’m not a huge fan of trading symptoms for side effects anyway, but this SNRI was fucking with my brain chemistry in ways I never would’ve imagined possible. I didn’t feel like myself, I was gaining weight fast, I was short of breath, I’d have mini breakdowns over nothing. Instead of feeling like my overactive nerves had been gently persuaded to calm down, I felt numb. Everywhere. The lack of sensation only made me more anxious.

slide_18

When I brought these concerns up at my next appointment, my doctor didn’t seem too interested. He looked up from my chart just long enough to tell me that if I went off the drug or lowered the dose, I would suffer.

When I tried to ask more questions—because, you know, my health is kind of important to me—I got the “difficult patient” treatment. To him every question was a personal assault on his intelligence, not a quest to learn more or find a better treatment option.

It was my last appointment with him.

***

So back to yesterday and my current doctor calling me out for being in denial for two years: it was a really, really hard appointment for me. For significant portions of the extended visit, I couldn’t talk because I was too busy wiping my nose and eyes with a tissue.

I am disabled now. I still can’t say that out loud yet; I can only write it. I’m not in a wheelchair, if that’s what you think when you hear the word disabled. I’m disabled because I haven’t driven in over a year for fear of injuring myself or others. I have to sit on a shower chair, and sometimes can’t lift my arms above my head to wash my hair. I can’t walk very far or very fast or sometimes even at all. I can’t think straight because the pain is so distracting. I can’t think straight because I am not sleeping at night.

***

Plenty of things have contributed to my two-year denial. For starters, because that first doctor was an asshole and a bad listener, I also wanted him to be wrong about my diagnosis. I mean, how could someone who wanted me to be complacent and follow orders possibly know what was wrong with me? He never listened to me!

I had test after test after test to look for the “real” source of my chronic pain, each time hoping something would pop up positive and I could mumble a self-satisfied “neener-neener” to the jerkwad.

I also internalized a lot of skeptical messages about fibromyalgia, despite outwardly defending myself and other fibromyalgia patients against them.

That’s not a real diagnosis.

You wouldn’t be sick if you could handle stress better.

You just want attention and pain meds.

Doctors decided to call it fibromyalgia because “female hysteria” is no longer politically correct.

Also, I didn’t want to be sick. I just didn’t want to be in chronic pain, so I pretended I wasn’t whenever possible. And I didn’t come up with that coping mechanism on my own. For years people have been telling other people to “just ignore the bee and it’ll leave you alone” and “just ignore the kid that’s picking on you and he’ll stop.” So why not take that same approach with pain?

***

I started yesterday’s appointment like I always had. “I keep continuing to decline.

“My heart rate…

“The dehydration…

“What about the possibility of something seronegative…”

Eventually, my doctor started getting through to me. “You have to deal with this chronic pain. Your muscle weakness, your high blood pressure, your erratic heart rate—those things are not happening independent of your pain. They are happening because of it.”

I nodded.

“Fibromyalgia is a real thing, not a character flaw,” she pressed and waited for me to look her in the eye. “It has an ICD-9 code and everything.” She searched my face for signs that I was getting the message.

Finally, I confessed that I knew my refusal to try different medications because of my Cymbalta experience hadn’t helped me at all and was likely making my life worse. I was ready to try.

“You’ve probably read a lot on the internet. How do you feel about trying gabapentin?” she asked, handing back the baguette.

***

Hi. My name is Emily, and I am sick. I have fibromyalgia*. That asshole doctor was right.

…but he is still an asshole.

*Actually, I should have trusted my instincts on this one, it’s a brain tumor.

Got My Illinois Medical Cannabis Card

Got My Illinois Medical Cannabis Card

It’s here! My Illinois medical cannabis card is here!

I went to the Medical Cannabis Outreach mobile clinic on August 13, 2016 for help with my application and fingerprinting, and I received my card in the mail on September 26, 2016.

That’s 44 days from start to finish.

I am relieved that marijuana is now available to me, particularly after fighting through some very difficult days in the past couple of weeks.

The plan is to write about my experiences, which promise to be enlightening. You see, not only will I be able to write about them from a patient perspective, but also as a new user.

That’s right, folks. Aside from a couple of contact highs in college, I have absolutely no experience with recreational marijuana. That’s because when I was growing up about all you could do was smoke the stuff, and that didn’t appeal to me. (For better or worse, no one ever offered me a brownie.)

Also, I had a very real fear of Satan, demon possession, jail and criminal records. So, yeah.

Anyway, my hope is that writing about using medical marijuana to treat my fibromyalgia will accomplish two things: 1.) opening a patient-to-patient dialogue that helps me and others discover what works, and 2.) showing non-patients on the fence about medical marijuana that it’s not something to fear.

Please feel free to use the comments section of any post or my contact form to ask questions along the way.

UPDATE: It wasn’t fibromyalgia. It’s a brain tumor.

You might also like this recipe for cannabutter and this one for cannabutter brownies.

Dehydration & POTS: A Mini Self-Study

Dehydration & POTS: A Mini Self-Study

This weekend I conducted a mini self-study. It included taking about a hundred more pulse readings and just generally being more aware of what I noticed in my body. (I put all that mindfulness practice from my meditation sessions to use and it really helped me evaluate where I am now.)

I’m Not Lazy, I’m Practicing Self-Care

Who am I trying to convince? Why, myself, of course.

My heart rate lowers immediately when I’m lying down, and I feel so much better. Until I started tracking my heart rate, I didn’t fully understand the connection between the position of my body and how good or terrible I felt.

So with the exception of getting up to pee and grabbing the occasional Gatorade from the kitchen, I watched TNT’s Star Wars marathon from bed this weekend. I can’t live like that all the time, of course, but after two days of simply accepting my limitations, I felt better.

All of that’s gone now that it’s Monday and I have a paycheck to earn, but I feel like I’ve found a secret weapon for feeling better.

I Always Wake Up Feeling Dehydrated

gatorade

This has been going on for a while and increasing in severity. Dry eyes, mouth, sinuses, skin. My lips are permanently chapped. Even my ears are dried out and itchy. Dehydration affects heart rate, so by the time I wake up in the morning, my heart rate is revved up (130-140 bpm), and I have a severe headache.

I had assumed all this dehydration was a side effect of the nortriptyline, so I stopped taking it for a few days to evaluate. The drug might be worsening things, but I feel dehydrated even when I don’t take it. What’s more, skipping it leads to my IBS creeping back. Not. Acceptable. I’m back to taking 10mg most nights.

On the In Sickness + In Health podcast, I heard that patients diagnosed with POTS drink Gatorade to ease their symptoms. My POTS suspicions coupled with my feeling dehydrated all the time got me to thinking that I should give the drink a try.

And, Yay! Gatorade makes me feel better too, sort of. Adding about 16 ounces a day lowers my heart rate by about 10-15 bpm across the board (though the 30 bpm difference between lying down and standing up remains). That means I’m not living my entire day in the target heart rate zone for aerobic exercise. Which makes me feel less exhausted, as long as I don’t try to do anything too bold (like live my life like I did before.)

All of the drinking comes with a price too: frequent urination. Every 30 minutes I’m up peeing, and I’m also up in the middle of the night. Which is bad since I have trouble sleeping even without nature calling at 3 am.

There are no solutions with chronic illness. Only tradeoffs.

One last thing about the dehydration; I am using Blink gel tears three or four times a day. That seems excessive, but maybe it’s not really for someone whose job is staring at a computer screen all day. My eye doctor first told me to use them in, I don’t know, 2011? She said that I had dry eyes and some scratches. But now I feel like I need them way more. Because the eyes and nose and sinuses are all connected, the tears actually sooth my nose and sinus irritation too.

I haven’t been to an eye doctor since we moved to Illinois three years ago. I should probably set that up. But getting dressed and leaving the house is so stinking hard.

Sjorgen’s Syndrome?

Sjorgen’s Syndrome?

I. Am. So. Ill. Today.

No Medical Marijuana news links for this week. I think I’m going to move to bi-weekly posts for that. Instead, a few notes about this crazy little autoimmune thingamajig I’m curious about: Sjogren’s Syndrome.

Point 1: Chatting with another Spoonie on Twitter this week, I was reminded that sometimes autoimmune diseases are sero-negative. I mean, I did know this already, but the conversation really got me thinking about how useless my bloodwork has been.

Point 2: Since I’ve mostly convinced myself that I have POTS, and since it is very often secondary to some other condition, I started looking into the possibility that I have some other primary illness that is sero-negative and not fibromyalgia. Perhaps something in addition to fibro or instead of fibro.

Point 3: I read up on Sjogren’s. (You may have read that Serena Williams has it.) I have so very many of its symptoms. There’s a lot of overlap in autoimmune and fibromyalgia symptoms though, so it’s anyone’s guess right now. Still I can check off too many of the items listed in this image from sjogrens.org to not ask my doctor about it.

sjogrens_body

Point 4: I was reading a study abstract (sorry, too tired to look it up and link it right now) that said that people with sero-negative Sjogren’s experience more intense symptoms. I have an appointment with my nurse practitioner (can’t see my primary doctor until late October, and that’s too long for me to wait) on Thursday. I might push for an MRI or see if there’s more we can do to investigate, since my blood isn’t giving up the goods.

Why I Think My Autonomic Nervous System Shit the Bed

Why I Think My Autonomic Nervous System Shit the Bed

I didn’t need my morningtime wake-up kisses from Dan and Boomer this morning, because I was staring at the ceiling by 6:20 am, fully aware and urgently needing to pee. I squished my eyes closed and wished for what I wish for every morning: to stay in bed just a little bit longer.

That wish didn’t come true. My bladder wouldn’t be ignored.

***

“Babby’s* up!” Dan proclaimed when I made it to the living room. He put his hands on my shoulders and looked at my wild morning hairdo. “You’ve kind of got this ’80s thing going on,” he smiled while reaching out and gently patting my hair so as not to flatten it. “How are you?”

“I have POTS,” I announced without ceremony. (POTS stands for postural orthostatic tachycardia syndrome.)

He took his hands off my shoulders turned his head slightly and looked at me, one eyebrow a full inch higher than the other.

***

I should probably back up a little. Last week, I made some new Twitter friends in an attempt to embrace my fibromyalgia diagnosis. You see, life is not getting easier for me, it’s getting harder. And I fucking don’t know what to do about it. So I thought maybe connecting with other Spoonies** would be good for me. I joined #SpoonieChat last Wednesday evening, and made a lot of new internet friends. The discussion was nice, but not profound.

The profound part came a couple of days later when some of the Spoonies I had recently followed started tweeting with the #MedX hashtag. One patient, Kirsten Schultz, was gearing up for her trip to Stanford to attend the conference. I was in awe of her. She was getting on a plane, attending days of conferences, speaking, and advocating for other chronic illness patients, all while managing her illnesses.

I spent three spoons just imagining what it would be like to be in her shoes. And that’s not a flippant remark. As an empath, I seem to take on those kinds of burdens just by thinking “What if that were me?”

Anyway, I had never heard of the Medicine X event before, but I was curious and took in what others had to say about it. A day and a half into the conference, I learned there was a livestream. I listened in on a few presentations and tuned in again when my Twitter feed erupted in white-hot anger during an opioid panel discussion with Hurt Blogger Britt Johnson.

I learned so much from #MedX—even from my couch, and I hope to get around to writing about all of it, but the thing that’s most relevant to this post is that I was introduced to the In Sickness + In Health podcast.

shit-the-bed

The podcast has been around for about a year now I think, but I started listening from the very beginning. The first five episodes were interviews with people diagnosed with dysautonomia, a medical term that describes several medical conditions where the Autonomic Nervous System shits the bed.

In those interviews, POTS (one form of dysautonomia) was brought up frequently. The show’s host mentioned a couple of times that she had diagnosed herself with POTS, and then had taken her findings to a doctor for verification and treatment.

***

The symptoms associated with POTS sounded very familiar to me: vertigo, lightheadedness, fatigue, the inability to perform any physical activity without being completely wiped of energy. So I decided to research the condition online***.

What I discovered was that unlike conditions and diseases like fibromyalgia, lupus, and MS, POTS was very easy to diagnose. The criteria are pretty cut and dry. From Dysautonomia International:

The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.

All a girl really needed to do was take her pulse after changing positions from lying down (supine) to sitting to standing. So I whipped out my trusty cell phone with its heart rate sensor and went to town. (I have moderately high blood pressure that my PCP has been hinting needs medication. Orthostatic hypotension was easy to rule out.)

***

Holy shit! This is why I want to spend all of my life lying down!

Monday afternoon around 2:00 pm, I took a break from work to lie down on my bed and rest. Rest time is something of a ritual for me these days. Using my phone, I took my pulse: 75 bpm. I congratulated my heart for beating so normally.

Then I stood up next to my bed and took my pulse again: 114 bpm.

What the fuck?

I wasn’t walking around. I wasn’t dancing. I wasn’t scared. I wasn’t doing anything but standing still and holding my finger against the sensor. I’ve read that most people notice an increase of only about 10 bpm when standing, so an increase of 39 bpm seemed noteworthy.

I took my pulse all day long Tuesday with similar results.

Then this morning, I got out of bed to respond to that insolent bladder I mentioned. The familiar whoosh of dizziness washed over me when I stood up. I wonder what my heart rate is right now, I thought. So I picked my phone up from the nightstand at 6:30 am: 140 bpm.

Perspective? Target heart rate (THR) for a 36-year-old person during aerobic exercise is 92 to 138 bpm. When I stand up, my body seems to think I’m doing strenuous exercise.

By 6:33 am this morning, I had all the data I needed to diagnose myself, but I kept logging data for the sake of logging data. Sitting on the toilet peeing: 106 bpm. Back in bed to catch my breath (because walking five feet to the bathroom and peeing is hard work, apparently): 83 bpm.

Ahhh.

Bed felt so good, I felt so wonderfully unburdened lying down****.

***

“I’m serious,” I said to Dan, going over the numbers. “I am diagnosing myself with POTS.”

“But you’ve thought you had everything figured out before.” He was skeptical with just a hint of condescension. He tires of my constant yapping about my body, probably because he’s been fighting his own battle with chronic illness for over 20 years. I don’t blame him at all.

He’s “lucky” though; he has the mangled joints, psoriasis, and blood work to prove he’s sick. Whatever I have going on, it’s seronegative*****—meaning there are no definitive markers in my blood—and the only visible change in my body is that now I’m fat and sometimes moon-faced. Doctors shoo me away and tell me to exercise. Their mouths don’t say psychosomatic, but their body language does.

I squelched my anger. Dan was right, in a way. I had suspected that I had celiac disease when I temporarily felt better after going gluten free. Then when I went through GI testing for my IBS (that’s a pretty way of saying I was constantly shitting water) I was sure that the results would reveal I was intolerant to lactose or fructose or that I had small bowel bacteria overgrowth or all of the above. Those tests all came back negative.

I didn’t push the POTS thing with Dan much after that. I’ve got like two spoons right now and an eight-hour workday with virtual meetings to fit in before I collapse this afternoon. Using my brain to justify POTS—even in light of the actual data I have—is futile. It doesn’t pay the bills or put food on the table. In fact, it prevents me from doing those things. So I dropped it rather abruptly.

“Sounds like you need to talk to your doctor,” Dan met me halfway.

“Requested an appointment yesterday through the patient portal,” I replied.


* This is spelled correctly. The term “babby” comes from this internet gem.
** Spoonies are people with chronic illnesses who identify with Christine Miserandino’s Spoon Theory and use it to explain their fatigue to healthy (or non-chronic) people.
*** I get a lot of grief from people for using Dr. Google to self-diagnose. If you are one of those people, fuck you. Get a mystery illness, sit in the exam room while your doctors fat shame you or call you anxious, and then tell me how you still think there’s nothing to be gained from patient stories, pubmed.gov, and  MedX discussions.
**** 
According to Dysautonomia International, the disability caused by POTS is compared to that caused by COPD or congestive heart failure.
***** My only positive result was for an antinuclear antibody (ANA) test, which is inconclusive because some healthy people test positive for it too. But I clearly am not healthy, and it doesn’t logically follow that I am fine because some healthy people test positive for it too.

Update: My Medical Cannabis Card Fundraising Campaign

I received a $40 donation for my medical cannabis card application, and that donation got me to 100% of my fundraising goal. Here’s my Go Fund Me campaign update:

screen-shot-medical-cannabis-fundraiser

I have great news to report! This weekend I received the donation that got me to 100% of my fundraising goal.

I am excited and so very thankful to everyone that contributed, shared posts on social media, and offered words of encouragement.

When I first set up this campaign, I thought, “It’d sure would be helpful if I raised a couple hundred dollars.” I didn’t have any expectation that I would raise the full $685.

So much about my prolonged illness has felt like a fight — a fight with doctors, a fight with bill collectors, a fight with pain and insomnia, a fight with bad prescriptions, a fight to get out of bed in the morning, a fight against myself, a fight against the bureaucracy of the State of Illinois.

This $685 battle was one a bunch of other awesome people fought for me.

THANK YOU!

It might be a while before I have my card and am able to participate in the Illinois medical cannabis program. If you’d like to follow along with the rest of my progress, please connect with me on my blog:
http://www.emilysuess.com

The Perfectly Posh fundraiser continues until September 25, and proceeds will help me pay for dispensary purchases. (As you probably know, medical marijuana is not yet covered by insurance.) You can join the Facebook event. Joining the online event doesn’t obligate you to make a purchase, by the way. You can just lurk and check out the products that are available if you like.
https://www.facebook.com/events/885633958204043/

Thanks again to all of you.

Peace, love, medical dope!
Emily

Unfortunately, Sunday was a high pain day, which means that as a matter of course it was a low mental health day. So I don’t have energy to write much more right now. Stay tuned, though, because later in the week I hope to write about some things I learned from the MedX conference livestream.

Now, to make some weed butter!

Countdown to Meltdown

Countdown to Meltdown

I got the first quote for the gutter work and the bathroom remodel yesterday, and then I had to open my Calm app and meditate for ten minutes to stop the building anxiety.

To answer your questions:

  1. Yes, this is just the first quote.
  2. No, I am not obligated to go with this particular company.
  3. No, I didn’t really think we would be able to afford an accessibility remodel of our bathroom anyway. (But I did let myself hope.)

Thing is, anxiety doesn’t stop to ask questions and then respond reasonably based on the information provided. That’s why I had to diffuse the situation with a few minutes of meditation.

Money is without a doubt one of my anxiety triggers. I’m not going to rehash the details of the medical bills I’m ignoring or let myself relive the nightmares of trying to sell The Condominium from Hell™, but money stress gets to me in a very painful way.

So when I saw the dollar signs followed by numbers WITH COMMAS, it was fight or flight. And since my fight and flight both seem to be broken right now, the result was what I like to call Countdown to Meltdown.

***

We can keep using our 1963 bathroom for the foreseeable future. If the day comes that I just cannot step in or out of the bathtub, there are more affordable (if a little bit janky) options available. I’ll deal.

However, the gutter and rotting fascia is a problem that needs a solution before it becomes a ginormous problem in need of an even bigger, more expensive solution. I’ve been trying to find other companies to provide a quote on the work without luck so far.

The problems with finding additional service providers:

  • Fibro fog makes it hard for me to speak on the phone. I hated the phone before I was sick.
  • Web searches for residential construction companies don’t turn up much in the way of results. The one company I did find is the one that provided the aforementioned quote.
  • I’ve been pretty much sick since we moved here. We don’t really have a huge network of people to ask for recommendations.

Not that I’ve given up. I’m just not looking forward to the work I’ve got ahead of me.

Response from Rep. Rodney Davis Re: Medical Marijuana

Response from Rep. Rodney Davis Re: Medical Marijuana

Just dropping in on a Saturday to say that Rodney Davis did eventually respond to my letter. For Senator Durbin’s response and more background, see the post: Make Medical Marijuana Legal in the US: An Open Letter to Senator Dick Durbin.

That Davis (or his staffer, rather) decided to go with “Mr.” is amusing, but basically of no import. Much as I hate to agree with Davis, I gotta say this part gets my approval:

“I believe we shouldn’t handicap the doctor patient relationship and that doctors should be able to provide the best possible medicines for their patients on a case by case basis – including medicinal marijuana.”

Wish he had the same hands-off approach to uterii, but that’s another topic for another day.

I’m also glad to hear that he voted in favor of prohibiting the U.S. Department of Justice from interfering with state medical marijuana laws. But it’s still necessary to outright legalize medical marijuana at the federal level, since a major problem with the discrepancy between state and federal laws prevents doctors and administrators from recommending cannabis to patients.

They can pass legislation take away rights in a heartbeat, but granting them or giving them back is next to impossible. Why is that, I wonder?

September 9, 2016
Mr. Emily Suess
XXXX X XXXXXXX XX
XXXXXX, IL XXXXX-XXXXDear Mr. Suess,Thank you for contacting me regarding legislation related to marijuana.  It is important that I hear from constituents in my district and I appreciate the time you took to share your thoughts.

As your member of Congress, I have supported efforts to allow industrial hemp production.  Additionally, I voted in favor of an amendment in the 113th Congress that would prohibit the U.S. Department of Justice from interfering with state medical marijuana laws and I cosponsored H.R. 5226, a bill that would remove therapeutic hemp and cannabidoil from the definition of marijuana, and allow it to be used to treat children and individuals with epilepsy.

Furthermore, too many of our veterans are suffering from PTSD and sadly, an unacceptably high number of our veterans have taken their own lives.  I believe we shouldn’t handicap the doctor patient relationship and that doctors should be able to provide the best possible medicines for their patients on a case by case basis – including medicinal marijuana.

Know that I appreciate your comments regarding marijuana legislation and I will keep them in mind if legislation regarding this issue comes to a vote in the full House of Representatives.

Please let me know if my office can be of assistance to you in the future.  If you would like to stay informed on what is happening in the 13th District, I encourage you to sign up to receive my e-newsletter by visiting https://rodneydavis.house.gov/contact/newsletter.  It is truly an honor to serve you in the United States Congress.

Sincerely,

Rodney Davis
Member of Congress

RD/JB
5 Ways Chronic Illnesses Cost More Money: The Chronic Illness Tax

5 Ways Chronic Illnesses Cost More Money: The Chronic Illness Tax

While Martkin Shkreli and Heather Bresch continue to make headlines, regular people struggle. You don’t need to buy Daraprim or an EpiPen to know that the cost of drugs, and healthcare in general, is prohibitive for too many Americans. It’s often called the chronic illness tax.

So, yes, let’s call out individuals for making disgusting salaries.

But let’s also remember that the system allows it, and it needs to be changed. Especially for people with chronic illness.

But we don’t just pay out the ass for daily meds, medical testing, and routine doctor visits. We also pay more than able-bodied people on items often taken for granted.

whole-foods-orange

1. Convenience Foods

Remember when the internet was scandalized by Whole Foods and the already-peeled orange? People called the $6 food “the Ultimate in Bourgeois Laziness.”

But for someone with RA, for example, a peeled orange can be a healthy snack alternative. That it costs a chronically ill person $6 to acquire shows what sacrifices patients have to make to eat healthier.

If you’re generally healthy, you might grab this once in a rush to find something convenient on your way to soccer practice and not give it another thought. If you’re a fellow chronic, you would probably wince at the price tag.

What if you wanted to eat an orange every day? Or even once a week? It’s cost-prohibitive, that’s what.

2. Utility Bills

Fibromyalgia causes a host of problems for me, including extreme temperature sensitivity. That means keeping the house at a steady 70 °F throughout the summer. And believe me, I pay for that comfort when I get my Ameren Bill every month.

A small jump of just two degrees might save me some money on my bill and be better for the environment, but at what cost to my health? Sweating, headaches, increased blood pressure, and the inability to sleep.

Guess which option I’m going to choose as a chronic patient?

3. Pillows

Yes, pillows. The good ones cost absurd amounts of money; the affordable ones either cause more pain or fall flat so quickly you have to keep spending money to replace them.

It’s not a frivolous concern either. Sleep is important for everyone, and patients with chronic illnesses are no exception. Insomnia, poor sleep, and not enough sleep can intensify pain and impair the body’s ability to heal and restore itself.

4. Toilet Paper

I’m not going to get too graphic, but can we have a moment of silence for all the chronics who suffer from ulcerative colitis, Crohn’s, IBS, and similar diseases and conditions?

If you’re going that frequently, that cheap institutional toilet paper is NOT an option. Don’t you dare suggest it.

5. New Clothes

And I’m not talking about getting the “essentials” from Vera Wang’s new Fall line. I’m talking about replacing clothes with items that fit our ever-changing sizes. (Weight loss and weight gain are prevalent symptoms, sometimes caused by chronic illnesses themselves, and sometimes a product of prescription drug side effects.)

As a person’s ability to dress herself deteriorates, there’s also a need to switch to clothes that are easier to put on. I’m talking front-closing bras, elastic-waisted dress pants, and shoes without laces, straps, or buckles.

This really just scratches the surface of the way patients with chronic conditions pay more for day-to-day living. Just something I hope more able-bodied people will consider as they try to understand what it’s like to be someone who will never again not be sick.

Relieving Resting Pain Face with Meditation

Relieving Resting Pain Face with Meditation

resting-pain-face

You’ve heard of resting bitch face, right? Well, I’m launching an awareness campaign for Resting Pain Face™ (RPF) because September is Pain Awareness Month.

One of the truly suck-ass things about having fibromyalgia and other chronic-pain-causing illnesses is that they increase your risk of unwittingly displaying pinched facial expressions. I catch myself doing this all the time.

I’ll lie down at night and realize that instead of letting my eyelids gently fall, I’m squinting with my eyes already forced shut — that’s like double squinting.

Or something.

Anyway, it’s bad because I’m giving myself headaches or exacerbating existing headaches on top of whatever pain I’m feeling in the rest of my body.

One of the most effective tools I have for combating RPF is meditation. But if you’ve ever tried meditating (even while healthy) you know it sounds a whole lot easier in theory than it is to actually practice.

A key concept of using meditation for pain management is leaning in or accepting or welcoming pain. I know. It sounds insane, but the idea is that when we fight or react to our chronic pain, we actually intensify the pain sensations. I 100% and wholeheartedly subscribe to this theory.

But let my give the pain-free folks out there a little analogy, lest someone start saying nonchalantly to The Pained “Have you tried meditating?”

Imagine that you’re experiencing pain because you burned your finger on the inside of a 450-degree oven door. The laws of meditation for pain relief state that in order to free your finger from the pain, you need to lean in, accept, or welcome the pain. It’s a bit like holding your finger to the oven door instead of pulling away. It’s next to impossible to do because it’s not fucking natural.

You see, the body instinctively winces, pinches, and fights to pull away from all kinds of pain. And when those reflexes become chronic because the pain is chronic, plenty of muscles tense and flex. And then the muscles just fucking stay that way because the pain is internal and there’s nothing to jerk away from, causing more pain and extreme fatigue. (Don’t believe me? Try flexing your bicep for two years without a break and let me know how things go for you. Next try flexing every muscle in your body for two years.)

I’m not trying to be Debbie Downer about the whole thing though. As I said, meditation is one of the most effective tools I can currently access for pain relief. If you’re a fellow sufferer, I recommend guided meditation. Someone gently whispering in your ear to exhale, relax your toes, or sink into your bed makes for a pleasant distraction that kind of tricks you into becoming more accepting of the primary source of your pain. The more you meditate, the better.

I recommend the Calm app, and nobody paid me to say so. You can also try Calm in your browser.

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