Now that I’ve been seeing him for a year, things between me and the pain doctor have shaken down to a place where we get along well even though each of us is convinced that the other one is mistaken being  completely unreasonable wrong. So I see him or one of his PAs once a month, tell them that, yep, everything is pretty much the same, get my prescriptions, and go home.

For my latest appointment they made me come in at (in my opinion at least) an ungodly early hour, a time when I feel like a cranky, gnarled-up old bridge troll who’s been kicked in the face and then stampeded over by all the Billy Goats Gruff and their immediate families; lord knows what I actually look like.

As I sat down the medical assistant doing my intake asked, “So, are you counting down to Christmas?”

“Well, I’m not counting down, but I am feeing the Christmas spirit this year,” I told her. “I’m glad I’m not still in the funk I was in last year at this time.”

“Hm,” she said, then asked, “Have we ever screened you for depression?” I tried to interpret this as an honest attempt to help, rather than a commentary on how terrible I look at way-too-freaking-early-o’clock in the morning.

“Oh, yeah, I’m bipolar”, I replied, wondering why she was asking me this since she had my file open on the computer and I only mention this every single time I come in and every single time I ever fill out any paperwork.

She continued. “So I’m just going to ask you some questions, if that’s ok with you.”

“Sure.” Whatever got me out of there and back to my troll cave.

“Do you ever have trouble feeling interested in people or activities, or ever feel like there is just no point to anything?”

I was unsuccessful in squelching my snort. “Yeahhhhh, that’s part of bipolar.”

She immediately stiffened and said, “I’m sorry-I’m not familiar with bipolar.”

blink

blinkblinkblink

What?!

[This is me, stunned speechless.]

How can you work in a doctor’s office and “not be familiar with bipolar”? How can you work in a doctor’s office and be required to screen patients for depression, and “not be familiar with bipolar”?

In what can only be described as a superhuman act of will (cranky bridge troll, remember?) I did not say any of these things out loud; instead, I attempted to educate.  “Unipolar depression is where you just feel depressed all the time, but bipolar is where you go up and down and have really awful mood swings.”

She was silent as she took this in. I really felt like we were having a moment. And then she kept asking her f’cking questions, none of which I remember because it was taking all my energy to use my Inside Voice to answer, YES, THESE THINGS, ALL THE THINGS THAT YOU ARE READING, I HAVE ALREADY TOLD YOU THAT I EXPERIENCE THEM SINCE THEY ARE ALL PART OF BEING BI-POLAR.

I don’t have a punchline for that story because…I can’t even…

So instead I’ll move onto Completely Bizarre Things I Never Expected To Learn Yesterday News, namely that

1. It is possible for humans to contract ear fungi, and

2. There is a statistically significant correlation between people who develop this affliction and people who own cats.

In Completely Unexpected News, I did NOT have to learn these particular facts as a result of contracting this illness myself, FOR A CHANGE!

However, having said that,  knowing what I now know, and knowing that I’ve lived with cats for almost my whole entire life:

I CAN NOW THINK OF NOTHING ELSE.

 

 

So yesterday I had my monthly checkin with my pain doctor (Important Side Note: I know I left The Adventures At The Pain Clinic story hanging, and I am going to get back to it as soon as I can. I just have to recover from July and August’s relentless attempts to kill me.)

I’m taking a time out from epidurals and nerve burns to let my body recover a bit, and even though I already knew the answer, I asked what the non-surgical treatment options were. He ran through the usual list of diet, exercise, chiropractic and core strengthening, all of which I am currently doing.

“Yeah,” he then said, warming to his topic and pointing enthusiastically at his abdomen, “you know, if you could get a six-pack, that would really help a lot.” (Naturally he is tall and thin, with nary and iota of body fat on him.)

Luckily I found this statement funny rather than obnoxious, so I just made some sort of noncommittal noise that could have meant anything from, “Hm, I will make a note of that,” to “Sure, I’ll get right on that!”

But inside I was thinking, “A six-pack, seriously? I’d be thrilled if I could make 3/4 of a can.”

My fibro and bi-polar have been pretty amped up lately, so I’ve had to go back to the very beginning and write down a list of all the things I know I need to do to take care of myself during times like these.

You would think-or at least I would-that I should remember what to do after all of these years, but one effect of chronic pain and illness is that you periodically get amnesia when it comes to things like this. Once the pain, or the anxiety, or the mania get to a certain point on The Awful Scale, they take up all of the space in your mind and body, and you kind of lose access to your higher brain functions, where these kind of self-care skills live.

Serendipitously (what a great word!), I recently saw on a friend’s Facebook page a link to a post called “Everything Is Awful and I’m Not Okay: questions to ask before giving up“. It’s another list of basic self-care items, and the author has turned it into a PDF that you can print out.

While we’re on the subject of printouts, Lizzie of The Pillow Fort has put together a customizable document called “Why Don’t You Just Know How To Help Me?” that you can share with the people around you so they know what to do when you find yourself in a bad place.

And don’t forget to say hi in the comments if you’d like to be entered into the raffle to win one of 5 Clean Bottles.

It’s been one of those days where I can handle the back pain, and the Level 9 And Rising Fibro Pain, and the weird cramp on the top of my foot that woke me up in the middle of the night, and the Cramps, and the fact that when my Physical Therapist asked me how I was doing I began my report with, “On a scale of physical misery from 0-10…”,but the unrelenting frizziness of my hair is sending me over the edge,

AND

a day where the fact that it’s been so long since I’ve watched the early years of one of my favorite TV shows, that rewatching them now is like having unexpected, bonus new episodes.

The (annoyingly consistent) principle of Both/And at its finest.

Here is the post I wrote for last year’s Fibromyalgia Awareness Day. I’m re-posting it as sort of a refresher course for myself, to help me remember these strategies that I too often forget.

(Originally published 5/12/2014)

Today is National Fibromyalgia Awareness Day.

I’m never really sure what to do on this day, because of course I’m aware of fibromyalgia in every single moment in which I am conscious. Plus, I’ve been living with this illness for 6 1/2 years now, so everyone I interact with on a regular basis, whether in person or online, is aware of it as well. It’s also regularly featured on television through the commercial for the drug Lyrica, so it’s been years since I’ve met anyone who doesn’t have at least some idea of what this illness entails.

When I first got sick, all I could see for a very long time was my own suffering. I hurt, and so I wanted everyone else to hurt too. In that place, I wanted people to be aware of how victimized and betrayed I felt, and how unfair  it was (to my mind, at least) that they got to continue on with their healthy, happy lives while I had to watch so many parts of my life disappear.

After a couple of years or so I was able to move up the emotional scale just a bit, from powerlessness and despair up to anger. Anger felt much better than hopelessness and grief, and it was from this place that Cranky Fibro Girl was born.  Here I wanted the world to be aware of my attitude, edginess, and self-righteous wrath. I was always spoiling for a fight, and always on the lookout for something-or someone-to bash up against so I could unleash the full fury of my wrath.

But eventually my anger ran out. It is very exhausting to be furious all the time, and after about 3 years I finally realized that being mad was not making one single bit of difference in anything related to my illness. I finally got that fibromyalgia isn’t personal-it just is. So I could be angry if I wanted to, but I only had a limited amount of time and energy, and I was starting to wonder if there were other ways I wanted to spend them. At this point my desire for awareness started to shift inward, to the relationship between me and me. I finally had to acknowledge that I would not be able to bend fibromyalgia to my will, so given that, how did I want to live?

After about five years, give or take, my symptoms stabilized a bit. I’d learned enough about how fibro affected me, my body, and my capacity to be able to venture out in the world a little. From here I’ve been focusing my awareness on how to create a happy, thriving, everyday life while also living with chronic pain and illness. So it is from this place that I offer a few of the lessons I’ve learned over these past few years of being ill.

1. Pain is hard. It’s ground me down. It’s aged me. It’s carved itself  in my bones, and chiseled itself across my face. It can literally cause me to go out of my mind, because when it gets high enough it cuts me off from my higher brain functions and forces me to hunker down in survival mode. It can steal all my memories of pain-free days, and any hope that eventually it too will pass. Therefore, the most important thing I can do to create a good life for myself is to manage my pain.

2. I am the one who makes meaning out of this illness. I am the one who experiences life in this body. I am the one who thinks with this mind. I am the one who navigates through my days, so I am the only one who can sift through all that information and decide what it means for me. No one is suddenly going to appear with all the answers for me, and it’s my responsibility to decide if that will help me or hinder me in how I live my life.

3. Healing does not necessarily mean being symptom-free. OH, how long it’s taken me to stop fighting that one. On the one hand I hate it, because I am SO OVER this pain. But on the other hand, it means I don’t have to wait for some magical point in the future-that may never come-in order to live, and to even live well. Not that this is an easy thing to do.

Which leads me to my next point, which is that

4. Life is Both/And, not Either/Or. At first I fought this idea as well, because -of course-I wanted healing to mean the complete absence of fibromyalgia. I was desperately attached to a very specific outcome. But it never came, and it’s entirely possible that it never will in my lifetime. So eventually I got tired of the suffering this rigidity was causing me, and luckily, this was suffering I could do something about. When I move away from the demands that All-or-Nothing thinking places on life, the possibilities for having a “good” day are, if not endless, still pretty darn high.

In practice, it might look like this:

“My pain was pretty high when I woke up this morning, AND I ordered a fun new book for my Kindle.”

“I was stuck inside the house again today, AND I have a new episode of ‘Blue Bloods’ to watch on TV.”

“I’ve had to take a lot of pain medicine today, AND I’ve been able to keep the windows open because the weather is gorgeous today.”

5. This is a marathon, not a sprint, and marathons are hard. I’m still working on this one. A LOT. I like beginnings, and I like ends, but middles are really tricky for me. And chronic illness means lots of time spent in the middle of things-pain, fatigue, boredom, etc.

6. Sometimes the best I can do is to help myself feel just a little more comfortable in a given moment, because “better” is just too far away. Sometimes chronic pain is excruciating and unbearable. And you have to bear it. And it is more than can be borne. (And just so that you know, that whole, “You’ll never be given more than you can bear” is kind of a bunch of hooey. Just saying.)When I am here, “feeling better” is in a completely different universe, and one that is just too far away for me to get to at that time. So instead I focus on what could help me feel a little more comfortable: pain medicine, a cold soda, a TV show, a bath, a book. Better is not always accessible, but comfort is.

7. Despite what my mind tries to tell me, this really isn’t my fault. I’m not that powerful.

8. Chronic pain and illness are not intellectual concepts to be grasped; they are experiential realities. Many people ask me what it’s like to have fibromyalgia, and even though I’m a writer and live for words,  I know that words can’t really make other people understand what I’m going through. They only way to understand illness is to be ill yourself, and I would never wish that on anyone, except  for maybe just a few minutes so they can really get how deeply I suffer and how strong I really am. I can’t explain it, you won’t get it, and that’s OK.

Here’s to another year of living well.

…every time you go to a new specialist they remark on how you’re taking too much medication, but after all the tests come back negative and you ask them what else you could possibly try they shrug, mumble, and hand you a prescription for more medication.

(You can find Part One here and Part Two here.)

So after after a visit with my new pain doctor that was more like the accidental collision of two random objects hurtling through space than an actual doctor’s appointment, I was sent to get an MRI. This was going to be a problem due to the fact that I am a tiny bit claustrophobic, in the same way that the Pope is a tiny bit interested in religion, and Atlanta is a tiny bit warm during July and August. Plus,  I was also a tiny bit pissy because I felt like a circus animal being forced to jump through meaningless hoops in order to earn the “reward” of not having to spend every minute in unspeakable pain.

(Here I must stop and give a shout-out to my MRI technician, James, who doesn’t know me from Adam and will most likely never read this. But he was kind, patient, and very reassuring, and made a stressful experience infinitely better than I thought it could be. Rock on, James.)

Happily I survived, so the next day I went to my second appointment at the pain clinic, convinced that this was all an enormous waste of time and energy-right up until the doctor announced that they’d found something on the MRI. Somethings, actually.

Unfortunately, this news came at the end of a three-week period during which, in addition to all the medical stuff going on, one of my cats (my BABY!) was diagnosed with arthritis, my car (my OTHER baby) died, my husband was in a car accident (he was fine, but it took three weeks for his car to be repaired), he had a skin biopsy come back as cancerous (he’s fine now, thankfully),  my chiropractor moved away, and they flew those two Ebola-laden American healthcare workers here to Atlanta, which was a tiny bit anxiety provoking.

So now adding to the whirligig that was my life was learning that I have a herniated disc in both my neck and my lower back. Finding that out was upsetting enough, but as the doctor started talking about what the treatment would involve I got more and more freaked out, and I realized that it had been a mistake to come to this visit alone. Since then I’ve finally admitted that I can’t be both the patient and the patient advocate, and even though I feel guilty every time he has to take time off of work to do it, my husband now accompanies me to all my appointments.

The doctor said that the situation in my back was serious and needed to be addressed right away, so he wanted me to come back in two days to start treatment. I was still reeling from the fact that they’d actually found something wrong with me so most of what he said was a blur, but I picked up enough to know that it was going to involve needles and my spine.

But the blows hadn’t finished falling yet, because as I dazedly asked him how this procedure was going to help my fibromyalgia pain he said, “Well, I don’t believe in fibromyalgia.”

And then my head exploded, because HOW IN THE WORLD WAS I SUPPOSED TO PROCESS THAT?! Why had my FIBROMYALGIA doctor, in order to treat my FIBROMYALGIA pain, send me to a doctor that DOES NOT BELIEVE IN FIBROMYALGIA?

W.

T.

F?!?!

So I said, “Um, what does my fibro doctor think about that?”, and he just kind of shrugged it off. He said, “I’ve seen a lot of people who come in here thinking they have fibromyalgia, but the problem is that they’re depressed, so they feel shitty, they’re obese, and they have a poor diet.”

In a superhuman show of self-control I reigned in all of my natural (and frankly, completely justified) instincts to violence and replied, “Well, I guess we’ll just have to agree to disagree.”

He replied, “Well, if it were me, I would want someone who didn’t believe in fibromyalgia because they would dig deeper to try and find other causes for the pain.”

This was a really annoying response, because unfortunately, he had a good point. So I could no longer enjoy an uncomplicated anger towards either him or my rheumatologist.

I was mad at my fibro doctor for refusing to prescribe pain meds for me anymore, and for sending me for treatment to a doctor who doesn’t believe in my illness. But, his doing so meant that they discovered a previously undiagnosed problem.

And I was mad at the pain doctor for kind of being a jerk, but he had treatments that might possibly take away some of my pain.

So, as the whirligig transformed into a tornado, I went to check out and try to figure out what to do next.

(To be continued.)

 

 

 

When last we left off I was in the examination room of the pain doctor I was about to meet for the first time, frantically trying to come up with answers to whatever questions he could possibly ask, trying to anticipate everything he might say,  trying to mentally strategize every potential situation, so that there would be no possible way for him to deny me my pain medication.

Being locked into such a mentally constricted and obsessive place is awful in and of itself, but it was magnified by the fact that the doctor was two hours late for my appointment. So between my anxiety over what was (or what wasn’t) going to happen, and my guilt at keeping my husband away from a work situation that needed his attention, not to mention spending two hours in a cramped, windowless room, I was about to lose my mind by the time the doctor got there.

And then…it was totally anticlimactic.

I met the doctor, he asked me some questions, glanced at my file, gave me a 2-second physical examination, said, “I don’t have any problem writing this prescription for you. But I can’t give it to you for fibromyalgia because it’s not indicated for that. So I’m sending you to get an MRI of your spine, because by this age (Important Side Note: Thanks so much. Like this illness doesn’t already make me feel like I’m 150 years old) there’s usually some degeneration,” set a follow-up appointment, and then went on to the next patient.

He left me in a very unsettled place. On the one hand, it sounded like I was going to be able to get the meds I needed. But on the other hand, I interpreted what he’d said as, “You have to go through this completely unnecessary medical procedure before I will give them to you.”

So I scheduled the MRI, because, what else could I do? He had the meds. I needed the meds. So I had to do whatever he said.

(To be continued)