Sometimes Dependent on Others Woman

jessica-jones.jpgMy mom tells this story about me. When I was a toddler, I was terrified of thunderstorms. Inevitably, I’d end up in my parents’ bedroom seeking comfort any time the thunder and lightning came.

My memories of this time are pretty fuzzy. But I do recall being afraid of thunder and sometimes falling asleep on the floor beside their bed. I guess pulling the blankets up over my head in my own room was only so consoling.

Eventually my parents decided I had to grow up. So one night during a thunderstorm, they closed their bedroom door and let me cry it out. After wailing through the Longest Storm Ever™, I crashed. They found me asleep on the hallway floor the next morning.

Mom says after that night I never left my room or cried through a storm again.


I’m no psychologist, but I like to think that the night I was left to cry it out alone was the night my independent streak was fully actualized. It’s my superhero origin story, and my superpower is: I don’t fucking need you!

Whether I couldn’t or should’t expect comfort from someone else didn’t matter. What mattered was that being okay with scary shit was on me, and I wasn’t going to let myself down.

But like I said, I’m no psychologist. And it’s probably just something I tell myself when my independent streak goes from superpower to character flaw—you know, to let myself off the hook.

It’s not my fault I don’t ask for help anymore. My life experiences made me this way.


Only now am I beginning to overcome the independent streak I let grow unchecked for the last 30+ years. I think I let it take over because I could. I was healthy and capable and got lots of stuff done.

With fibromyalgia, though, I have had to squash the independent beast within. Like smooshing down the trash in a garbage can, I sometimes have to plant a foot on top of the heap and step on it with my full weight to make room for a different superhero: Sometimes Dependent on Others Woman.


Sleep Study, Iron Testing, So Long Gabapentin

sleep-memeGetting out of bed is so hard. But I did it—for the second day in a row—and finally got to sit down with my primary care physician today. I’d hoped to write something better today, but the best I can do is keep everyone apprised of the basics:

  • I told my doctor that I had stopped taking Gabapentin and explained the nightmares that were trashing my already-trashy sleep. She made a note on my chart and said, “I’d have stopped taking that too.” She assured me I wasn’t imagining things and that although it was rare, other patients had reported nightmares and night terrors too.
  • At her suggestion, I’m going to try upping the nortriptyline again to 20 mg at bedtime to see if I can get over the slump of daytime sedation it causes. The hope is that my body will adjust. Because I don’t seem to suffer worse side effects, I’m cool with giving it another go. It could help with the fibro pain.
  • Since sleep problems keep coming up, she’s referred me to a sleep doctor. I have to have an initial consult first, but it seems likely that I’ll be completing a sleep study. “You know they torture people by depriving them of sleep, right?” she said. “If nothing else, we need to get you sleeping again or your health will never improve.”
  • Related to the sleep, she ordered tests for my iron levels and a couple of other things. I honestly can’t remember what the other stuff is right now. Since I’ve been struggling with burning, tingling, and crawling sensations in my feet and legs, low iron could be playing a role. We were surprised to look through my records and see that my iron hadn’t been tested yet.

All in all, it was a good visit. Her suggestions fell in step with The Fibro Manual that I’ve been reading. That is, prioritizing sleep, checking out iron levels, ruling out or treating things like restless leg or apnea that could be keeping me from getting the sleep I need.


Doctor Appointment Postponed

charlie_brown_pain_scaleI went to the doctor’s office this morning, but didn’t get to see my doctor. Her first appointment went way over, so a nurse asked me whether I wanted to wait for at least another hour (because there was also a patient still ahead of me) or reschedule.

I opted to reschedule. It’s a struggle to get out of the house, but she listens to her patients and sometimes things run long. I can’t fault her for that.

Still being bound up in jeans and a bra in a waiting room chair isn’t just uncomfortable, it’s a recipe for even harder times. There was a last-minute cancellation for tomorrow morning, so I’ll try again in the morning.


After I published yesterday’s almost optimistic post, the weather here turned brutal. Wind. Rain. Cold. Damp. I’ve gone from pain to more pain to numbness. And even though the sun’s out now, the damage has been done.

This is how I know things are really bad: my brain is like “I’m just going to turn the pain signals off and we’re going to go numb for a while, mkay?”

Okay, brain.


I’ll try to write and entertain another day then.


A Plan for Getting Better: The Fibro Manual

Taking a few blog minutes to assess my health today. I’ve got a follow-up appointment with my PCP tomorrow morning, and I started reading The Fibro Manual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor earlier in the week. (It has been a huge help so far. Thanks to my friend Jeff for sending it my way.)

I’ve been off the Gabapentin for a few days now, and am feeling much better. And by much better, I mean I feel as shitty as I did before the drug, but not as shitty as I felt while taking it or for the first 48 hours after quitting it. In hindsight, I’m realizing that the drug made me pretty irritable. It also increased my pain and tortured me in my sleep, so I guess the irritability was kind of a foregone conclusion.

I’m both mad at myself for taking it (knowing I’m super sensitive to medicine) but also proud of myself for being willing to try it and trusting myself to know that it was not for me and quitting it before it wreaked more havoc on my body and mind.


So, back to that book. It has been very helpful—more helpful than any of my doctors—in showing me why my body is doing what it’s doing. I believe that’s because it’s written by a doctor who has fibro and has made understanding it and treating it her whole career.

It’s taught me to break down the management of the condition into ordered steps, giving me a plan (I love a good plan; I’m a planner, baby). My first focus is restoring my body’s ability to “rest and digest” by getting better sleep. Because my stress response is always on, I have to accept that I can’t get restorative sleep without medication. I have to make it happen.

The author gives a chart for meds and supplements to aid with relaxation and deep sleep. Gabapentin is on it, as it turns out, but that’s a no-go for me. Fortunately, things I already take are on it: medical marijuana and nortriptyline. I have already discovered my magic combo for sleeping well: 10 mg nortriptyline (originally prescribed for my IBS, so BONUS!) and 1/4 of a medical cannabis gummy before bed (which also reduces my anxiety and pain).

Once I’m getting consistent sleep, I’ll be ready to move on to the next step of the treatment plan.


I have been encouraged by friends to soak in Epsom salts (magnesium sulfate) to help alleviate soreness and neuropathy, particularly in my feet and legs. So on Monday I took a bath and dumped in about a cup and half of Dr Teal’s foot soak. Turns out we had some stashed in the back of the linen closet.

It settled the nerves in my legs by like a bajillion times, plus the warm water soak made it possible for me to stretch out my hamstrings. However, I couldn’t get myself out of the bathtub. Combine perpetually weak muscles with heat and relaxation and you get bones wrapped in unset Jell-O. Dan and I devised a plan to get me out, but not before I started panicking that I was stuck in the tub forever.

Dr. Liptan, the author of the book, said some of her patients found transdermal magnesium lotions and oils gave them relief from restless legs when they applied it at bedtime. (Another part of getting good sleep is treating the things that keep us fibromyalgia patients awake. Things like RLS.)  I don’t have any transdermal magnesium yet, but I plan to give this magnesium lotion a try. I doubt it will be as effective as the warm bath, but until I can safely get in and out of the tub it seems like it’s worth a try.


Overall, I’m feeling positive about the future and even imagining a time where I am slightly less disabled than I am now. Hopefully, I can get my doctor on board with the book’s plan tomorrow. But even if I can’t, I don’t feel like I’m completely dependent on her for my treatment and care.

It’s going to be trial and error. I know that. But I feel way less overwhelmed by the complexity of my condition. That alone helps me sleep better at night.


Being Sick is Scary… For a Lot of Reasons

scared.jpg“Just so you know, Dan, I read that quitting Gabapentin can be rough. Withdrawal symptoms include suicidal thoughts. So, keep an eye on me.” He paused in the doorway on his way to the kitchen.

“Okay, I got your back,” Dan said. “Need anything while I’m up?”

“Yeah, could you bring me a knife?”


The number of nights I’ve had bad dreams in the last nine days is exactly equal to the number of times I’ve taken Gabapentin before bed. At first, the bad dreams were pretty typical. But in the wee hours on Saturday morning, I woke up from a bad dream and couldn’t move anything. Not my arms, not my legs, not my fingers, not my toes.

The paralysis only lasted a few short seconds, but that didn’t really minimize how scary it was for me. Much scarier than the bad dream I’d just had. (My parents were throwing me a birthday party, but no one came and my parents had looks of pity on their faces. I know, but trust me: It was brutal for someone who wants to be honest about her struggles but also not be pitied.)


Sleep does not come naturally to me anymore, probably because fibromyalgia is characterized by an always-on stress response. If something I do or some medicine I take further impedes my body’s ability to get restorative rest, I drop it fast.

While Dan was helping me walk down the hallway that afternoon, I announced, “I’m not taking Gabapentin anymore.” I didn’t take it before bed Saturday evening.


Sunday morning, about 2 am, I had what I’m calling a night terror. I’m assuming as a result of Gabapentin withdrawal.

I dreamed that I was awaking from sleep in the guest room because inanimate objects in my home were attacking me. A lamp. The shower head. A paper towel.

I screamed and screamed and screamed for Dan to come help me. But it was a nightmare, so naturally I couldn’t scream loud enough.

I kicked and flailed and screamed some more, until Dan finally came into the room to comfort me.

Only he wasn’t actually there; I had begun another dream. The Inception-level dream within a dream shit was already a few layers deep at that point, and the more I tried to wake myself up, the further down the rabbit hole I fell.

I did finally wake up for real, sweating and clenching my chest. I was breathing, but it felt like I was suffocating.

I closed my eyes; I had only been asleep for two hours and was physically exhausted. Two hours was no where near enough rest for the night. But as soon as my eyelids fell, the panic swallowed me again. I opened my eyes, and reminded myself that it was just a bad dream. My eyelids got heavy again; the panic swallowed me again.

That’s about enough of that.


I got up and went to the master bedroom to find Boomer snoring soundly on my side of the bed.

“Something wrong?” Dan asked. My stumbling into walls had apparently roused him from sleep.

“Just another bad dream. It was so…”

But before I could complete the sentence Dan was snoring again. I curled up in the top left corner of the bed and closed my eyes…only to be swallowed by the panic. Again.

I got up and went to the living room, turned on an accent lamp, played Farm Heroes Saga to keep myself awake, and vowed to wait it out.


Being chronically sick is scary. Of all the ways I react in response to fibromyalgia, fear is the thing that takes up the most space in my brain and the thing I talk about the least.

When a flare begins, I fear it won’t end this time.

I fear falling because I know I can’t get up on my own.

I am terrified of addiction to drugs like Gabapentin (even after taking it for just nine days!) and am scared of the inevitable withdrawal symptoms I will face when I decide to quit taking it.

I am scared of drug side effects.

I get scared that my fibro fog will lead to big mistakes with severe consequences.

I worry that I’ll collect more symptoms. I worry that those symptoms are a sign that something else is wrong. I worry that my health care providers will miss it—or worse, won’t care. I worry that I’m misdiagnosed. I’m scared that a misdiagnosis would mean I’m not treating something bad, and that the longer I go without treating the real thing the less treatable I become.

I fear that spending to much time being afraid will make me sicker.


Dan handed me the knife, and I started cutting a gummy into quarters. I’m off of Gabapentin and using small doses of medical cannabis to keep the proverbial elephant off my chest and sleep without being terrorized while my body adjusts.

Medical marijuana might be the only thing I don’t fear right now. I want to hug it.


There’s always room for grace. And carrot cake.

I don’t know if you guys noticed, but I didn’t publish anything here yesterday. That’s because it was a hard day.

I had three things on my to-do list again: complete my absentee ballot, get outside and walk in the backyard, and trim my nails. (Is it absurd that I have to make a list for such mundane things? Absolutely. Is it necessary? Yes.)

For every simple thing I got done, the universe rewarded me with unwarranted complications. First the water company called me to tell me that if I didn’t pay up they’d be disconnecting our service. Then my feelings were hurt by something Dan said. And finally the plumbing backed up while I was taking my shower.


About that first complication—somehow I missed paying the last two water bills.

“Hi, I had a message to call you guys. I’m not sure what it’s about.”

“Let me just pull up your account information. One moment.” Dan and I were listening to the Illinois American Water customer service rep on speaker phone. “It looks like your account is past due. We sent out a disconnect notice in the mail.”

“Huh,” I said. “Well, I can pay what we owe, but I haven’t seen the letter.”

“Oh, well, yeah… It was sent out yesterday, so you might not have it yet. Sometimes we call before it gets there.” I rolled my eyes and made a slightly obscene jerking motion as she backtracked and apologized. Dan laughed quietly.

We settled up for $153.33, and I hung up the phone.


Now, money is tight for us, but we can still pay our water bill. I am not yet to the point where I have to decide which utility I’m going to pay this month in order to keep someone from disconnecting us.

“I think I’m losing my mind,” I told Dan after the call was finished. “I don’t know how I forgot to pay them. Twice.”

Also, a few days ago, I accidentally paid $75.00 on my zero-balance bank credit card when I meant to transfer the money from a reserve account to my checking account.

Dan tried to help. “What can I do?” he asked.

“Short of taking over all the money stuff? I really don’t know.”

“What about reminders, or some kind of checklist?” he suggested.

“Yeah, that’s already in place. Online billing. Paperless alerts. Email reminders. I think I’m just losing my mind.” The brain fog—more specifically in my case fibro fog—is real and it’s kind of scary. It’s the reason why I haven’t driven in over a year.

“We need to get you to eat a vegetable,” Dan said, unwittingly striking one of my dysfunctional nerves.

“This,” I said weakly gesturing at my pajama-covered body and walking cane, “was not caused by my diet, and it cannot be fixed by my diet.”

He assured me he didn’t mean it like that, and I believe he didn’t, but I was riled. “Well that’s how I took it! Think about it next time!”


One of many reasons chronic patients are upset by suggestions to eat right and exercise is that both imply we brought a health crisis on ourselves because we didn’t have the willpower to stop it.

Like that ice cream cone I ate on October 16, 2014 for dessert was the straw that broke the camel’s back.

If only I’d eaten a plate of broccoli for dessert instead.

Is everyone who eats “worse” than us sick? Is everyone who eats “better” than us healthy? Don’t fucking think so.

We don’t care that your Great Aunt Ginny cut out all wheat and feels like she’s 19 again. We are not your Great Aunt Ginny.  And we resent that you think we haven’t already tried everything to make our illness go away.

Take me, for instance. I’ve tried every healing diet known to man in the last couple of years. Low FODMAP, gluten-free, no HFCS, green smoothies…yada, yada, yada.

Not only did all of them fail to heal me, most of them didn’t even alleviate a single symptom for longer than 7 to 10 days. Plus any strict adherence to a health-food-only diet stripped me of one of the few things I can still enjoy in this life—eating socially.

I might be able to shrug off these suggestions more easily if I could whip out a blood test or MRI result or something—anything—that validates my disability. But I am almost perfectly fine on paper. As a result I’m ridiculously touchy—whether someone outright accuses me of Sabotage by Diet™ or absentmindedly makes a suggestion founded on a similar premise.


“You realize we eat almost exactly the same things, right? I just pick mushrooms out of your homemade stroganoff and refuse to let you defile my serving of macaroni and cheese by mixing in peas.”

There’s no denying I’m pickier than Dan. On the surface, I can see how it might look like I’m averse to eating foods that are good for me. But on closer inspection, that’s not what’s going on.

I made him feel bad. He apologized, and not in the way six-year-old kids do when their parents make them. It was genuine, and I instantly forgave him (even if I did need a few minutes alone to chill out).


This morning when I woke up there was a carrot cake on the counter.

Every night for the last week I had mentioned how I really, really wanted carrot cake. We were waiting for the next paycheck to do any official grocery shopping, though.

Well, today was payday, and Dan went out to get groceries, and he put them all away before I even rolled out of bed this morning.

“You better eat your vegetables,” he winked.


One of my favorite internet memes is the one that reminds us to be kind to everyone we meet, because we have no idea what battle they might be facing. In the case of patients with chronic illnesses (and especially invisible chronic illnesses), I think it’s safe to assume they are fighting 9 or 10 battles at once—battles you don’t know anything about.

Not that being a patient with a chronic illness gets us off the hook for reciprocating kindness or forgiving people that hurt our feelings.

I guess what I’m trying to say is that there’s room for all of us to dole out a little more grace. And carrot cake.


Oh yeah? Well you can’t tell me that I *am* depressed.


My hands are swollen today. My skin burns. My knuckles ache.

If I use the computer mouse for too long, my hand curls into that shape, and I have to force my fingers and palm to straighten out. At the same time all off my muscles—in addition to the ones in my hands—are weak. I mean can’t-stand-up kind of weak. And can’t-raise-my-arm-to-scratch-my-nose kind of weak.

It might be the Gabapentin, or it might just be me racking up more symptoms that science and medicine fail to explain. At this point, I don’t know what’s what. And once again I find myself wondering if this is really fibromyalgia.

At the end of last week, I had accepted as much. But with so little solid information out there about fibromyalgia, it’s hard to remain 100% committed to the diagnosis. My feelings on it change with the barometric pressure.


I had planned yesterday to do a couple of laps around the backyard. But it didn’t happen. I was so exhausted after a basic shower that I couldn’t even trim my nails or keep my eyes focused on the TV until the end of the vice presidential debate.

So why the hell couldn’t I sleep when I finally gave in and went to bed? Because instead of sleeping, I had imaginary conversations with a few of my doctors.

Now, I’ll be the first to say that a lot of Spoonies would kill to have an encounter with their doctor (actually, she was a physician’s assistant) like I described last week. One where the provider reminds you that you aren’t to blame for your condition. But it was a long visit, and it wasn’t all rainbows and sunshine. One part of it in particular really made me bristle.


“You can’t tell me you’re not depressed,” she said. “Anxiety, depression. These things go hand-in-hand with fibromyalgia.”

Well, since she admitted I couldn’t tell her I wasn’t depressed, I didn’t try. I would have shrugged in her general direction but the intense pain in my neck, shoulders, and back wouldn’t allow it. So I just sat quietly, stifling the urge to shout at her. (As an aside, did you know that some doctors have signs in their exam rooms warning you that they and their staff will not tolerate swearing or disrespectful treatment? The fucking irony, guys.)


Have you ever heard of the term non-compliant as it relates to a patient? Unless you’re a chronic patient, I’m guessing not. It’s what doctors label patients who don’t follow orders. I would guess that practically every patient would qualify as “non-compliant” at some point.

Ever eat high-cholesterol foods when your doctor says don’t? Ever fail to finish the last couple of antibiotic pills in your prescription? Ever watch TV instead of getting up and moving around? Ever just cancel that follow-up appointment because you felt better and didn’t want to waste anyone’s time or shell out for another co-pay?

Congratulations! You are a non-compliant (or difficult) patient!

A decade ago as a young, mostly healthy patient, there weren’t really any consequences for my non-compliance. If I didn’t finish my dose pack for a sinus infection, the doctor would never know. I probably wouldn’t see her again for months or even years.

As a chronic patient, if I feel a medication is doing more harm than good (and presumably only I can possibly know this, right?) and I opt to stop taking it, chances are very high that I will be labeled non-compliant by the prescribing doctor. That label puts a very real strain on the doctor-patient relationship for reasons that I will assume are obvious.

As a professional patient, I’ve encountered a fair number of doctors in the last couple of years. Almost every one has regarded me as being some level of non-compliant. I don’t know that any of them would dare to write this on a patient’s chart, but it’s apparent in their body language, tone of voice, and willingness to listen.

(I just want to explain this whole non-compliance thing to help others understand why chronic patients might complain about medicines but keep taking them or complain about their doctors but keep returning to them. Starting over with a new doctor is often harder than putting up with a stubborn one.)

Anyway, back to the whole depression thing.


I cry. A lot. But I don’t consider myself depressed. I cry because of pain. I cry because of the embarrassment of living with IBS. I cry because I can’t drive, and I have to ask Dan to do all sorts of ridiculous things for me. I cry because my life has changed in ways I really, really don’t like.

But I don’t cry because the sky is blue or because someone left the milk out on the counter overnight.

I feel like my sadness isn’t a sign of an imbalance in my brain’s chemistry but a sign that it’s still working really well. Being chronically ill sucks all kinds of ass. I’m not suppressing “weak” emotions, and I’m not emotionally numb.

If I lost someone close to me, I’d cry right? People would look at me sideways if I didn’t cry. Well, I have lost someone close to me. ME!

But I can still laugh, crack jokes, appreciate a good homemade lasagna. And I still sing every time Simon & Garfunkel’s “Feelin’ Groovy” starts up on Google Play.

So I resisted the urge to raise my voice last Thursday and say, “If being sad about sad things makes you sure I’m depressed regardless of my input, you also have issues.”

But I didn’t, because I don’t have the energy to fight with my health care providers, and I don’t have the energy to find a new one.