Cranky Fibro Girl

Harnessing the healing power of snark

Planted Firmly In The Second Stage Of Grief

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So after hanging out in The Land Of Denial from approximately October of 2007 until last Monday, I have now landed squarely in the Land Of Being Really, Really Pissed Off About Being Sick. I’m trying very hard not to inflict this on anyone else, but sometimes it is EX-TRE-ME-LY difficult. Because if I thought I had problems with people back when I worked in retail, they were nothing-NOTHING!!-compared to what I’m dealing with now. Which can pretty much be described as People Finding Out That I’m Sick, And Then Acting Like A Dumb Ass.

For example:

1. The day I received my diagnosis of fibromyalgia I posted it as my Facebook status, to update everyone who was sending me good vibes that day. I was SO relieved to finally have this sucker identified, and so, SOOOO happy to finally have my first significant pain relief in over a year. So I was pretty much reveling in the little things like, oh, once again being able to walk and use all of my limbs, and just about everyone I talked to understood what a big deal this was, and rejoiced with me. Except for the person who sent me the following email:

“Gluten intolerance’s most common misdiagnosis is fibromyalgia. We have a friend who was diagnosed with it for 10 years – miserable, on lots of meds for pain, etc…she went off of gluten and she’s fine – off of all of her meds.”

Honestly, when I read this email, I became so enraged that I started to shake, and I lost my ability to speak for a few minutes. Not because of anything related to the idea of going gluten-free. Obviously that in itself is pretty innocuous. Instead, it was how invalidated and dishonored this person’s response made me feel.

After all the agonizing pain, and suffering, and not knowing, and being misdiagnosed, and trying things that didn’t help me at ALL, and being afraid that this was what the rest of my life was going to be, I finally found someone who could correctly identify what was happening to me, and who gave me hope that there are lots of things I can do to get relief and to continue to have a really good quality life, and most importantly, SOMEONE WHO STOPPED THE PAIN. It was a Divine Gift, and I was so, SO grateful for it.

And then to have this person completely disregard and dismiss all my experiences of the past year, without knowing anything about me, what I’ve been through, what my doctor and I have talked about, OR ANYTHING ABOUT THE PRACTICE OF MEDICINE IN GENERAL, OR THE DIAGNOSIS OF FIBRO IN PARTICULAR, and then invalidate the only thing that’s helped me feel better or get relief from pain in the past year and tell me that IT’S WRONG AND I SHOULD STOP IT, BECAUSE THEY HAVE THE ACTUAL, CORRECT ANSWER FOR ME, made me want to rip out their tongue with my bare hands, and then feed it back to them through their eye socket. Obviously I didn’t do that. But I did think about it. A Lot.

And speaking of people who wanted to take things away from me, then there was this:

2. As I mentioned in a previous post, I had to go to the dentist earlier this week. I shared the details of my treatment plan with him, since he is one of my health care providers, and I assumed he needed to know what was going on with me.

I explained that I had been put on Lyrica, and that it was providing quick, amazing results in the area of pain relief, and that I loved it deeply with my whole heart, and wanted to marry it and have its babies (and I don’t even WANT children.)

And his response was, (after incorrectly identifying Lyrica as an anti-depressant-which it’s not; it’s an anti-convulsant-and lumping it in with other drugs that affect Serotonin levels-which it doesn’t; it has nothing to do with Serotonin) to ask me, “So, is there any hope that you’ll be able to wean yourself off of it in a little while?”

And I looked at this man and thought, “WHY IN THE NAME OF GOD WOULD I EVER WANT TO DO THAT?! I AM ALMOST COMPLETELY FREE OF PAIN FOR THE FIRST TIME IN A YEAR. WHY DO YOU WANT TO TAKE THAT AWAY FROM ME? WHY DO YOU WANT ME TO SUFFER AGAIN, STUPID PERSON WHO IS SUPPOSED TO HELP ME CARE FOR MY HEALTH?!”

Dumb ass.

And then, speaking of babies, I must also share this email I received shortly after the doctor pronounced his diagnosis:

3. “What kind of treatment plan have they suggested? Also, I’ve never asked but do you have any children? I have a friend who suffered from fibromyalgia and a chiropractor suggested that pregnancy could potentially “cure” it or minimize the painful effect.. It worked for her.”

I don’t even know what to say to this, because there are So! Many! things wrong with it that they all try and come out at the same time, and then my brain explodes into a million, billion pieces, and then I have to go lie down on the couch and watch my husband slaughter super mutants on Fallout 3 in order to recover.

Here endeth the first lesson on DumbAssery.
Let us go forth and irritate the crap out of others no more.

Ladies And Gentlemen, We Have A Diagnosis

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So the bad news is that it seems I’ve been misdiagnosed for, oh, conservatively speaking, at least the past year.

The good news is that I went to a specialist and am now getting treated for what I actually have.

The bad news is that I have fibromyalgia, which frankly, SUCKS GIANT DONKEY BALLS.

The good news is that if you’re going to get fibro, now is apparently the time to do so, since there are a lot more treatments, including some new medications that allow you to not spend each and every moment in excruciating pain, which ironically makes this the first time I’ve ever been part of a current, leading-edge trend. THANKS, UNIVERSE. HA, HA, THAT’S A GOOD ONE! (Grrr.)

It’s an awful lot to take in, so any prayers/good thoughts/healing energy/holding in the light/chanting/drumming/nakedness/burning stuff, or any application of your particular method of invoking the presence of The Divine on my behalf would be much appreciated.

What Not To Say: Part 4

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6. Projecting your personal “stuff” onto us.

Lordy Day, did I experience this when I made the mistake of telling anyone who was not me or my doctor that I was taking steroids to help control the agonizing, incapacitating arthritis pain that I was experiencing back in the spring.

I thought I was saying, “Yeah, my doctor gave me some Prednisone to help with the pain,” but apparently what everyone heard was, “I’m currently ingesting a special tonic composed of the leftover radioactive material from the Chernobyl disaster, laced with some accompanying drops of the dark black essence at the pit of Satan’s soul.”

Unfortunately, no one would ever just come out and say, “Hey, I’m concerned that you’re on steroids.” Instead I was regaled with many, many stories involving friends, family members, or someone they’d heard about while standing in line to pay for gas who contracted some kind of illness, stupidly took steroids, then found out that “that was the worst thing they possibly could’ve done,” and now they are crippled/maimed/disease-ridden/comatose/an invalid/dead FOREVER.

The implications in all of these stories were, of course, that a)I was an ignorant, reckless, idiot, who just leaped onto the first treatment plan that caught my attention without actually knowing what I was getting into, b)that I was selfish and inconsiderate for doing something that was clearly upsetting the person I was talking to, c)and that if I were a “good” friend/family member/whatever, I would immediately cease said upsetting action, and instead choose a treatment plan that they were comfortable with. You know, because my illness is all about everyone else.

Give me a fucking break.

It’s not like I just woke up one day and said, “Hm, what can I do that will recklessly endanger my health, as well as freak out the maximum number of people possible? I know-I’ll start using steroids!” I took that medication because I needed it. When it’s your turn to experience such excruciating pain that you can neither move your arms, stand, walk, or even get out of bed, then you can treat it however you want to. But I’m the one who had to live through all this stuff, and this was my choice. So BACK OFF!

Nobody but the sick person knows what they are going through, or what they need to survive. Telling horrifying stories to someone who is barely able to function as it is is just mean, especially when you’re doing it to “punish” them for upsetting you with their choices. Either come out and say what is bothering you, OR KEEP YOUR BIG MOUTH SHUT!

What Not To Say: Part 3

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I really appreciate all the comments you guys have been leaving me the last couple of days, as well as the fact that my ranting has not driven you away. 🙂

If you’d like an additional perspective on this situation, the awesome Lynne Morrell has written a companion piece to this series which lists things you can do to help someone living with a long-term illness.

And so, without any further ado, I give you Part Three of What Not To Say:

5. Appointing yourselves as our personal Director of Information.

Attention healthy people: On behalf of chronically ill people everywhere, I would like to take this opportunity to tell you to STOP RESEARCHING OUR ILLNESS FOR US!

We have all the information we need, thank you very much.

We know exactly how sick we are. We know what treatment options are available to us. We know all the bad things that can happen as a result of our particular illness, because we are living through them every day. We are working closely with our doctors, and are following the treatment plan that works best for us.

It may not look like it from the outside, because we aren’t doing things exactly the way you would do them, but I promise: we are already doing everything that can be done.

Oh, and while we’re on the subject? Please also stop telling us about all the additional awful illnesses you’ve found that match the symptoms we are having. We already have enough to deal with; we do not have the energy or the resources to worry about something new that, more than likely, WE DO NOT HAVE.

This kind of research may be a nice, intellectual exercise for you, but it just causes massive stress for us. It is also frustrating to be treated as though we have no idea what we’re doing, when we are the ones living with this illness-not you-and all we are ever doing is working to get better.

So please, just keep this information to yourself, because we don’t want it. Otherwise, don’t be surprised when we strangle you with your own computer cables. Because you deserved it.

What Not To Say: Part 2

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Alrighty then. Now that I’ve most likely chased off my five remaining readers with my intense and unfiltered pissiness, I guess there’s no reason not to keep right on going with it. So this morning I present my next installment in the ongoing saga of

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

3. Expecting our recovery to be linear and predictable.

This occurs whenever we’ve experienced a handful of “good” days, and then suddenly go back to feeling bad again.

What you say:

-“Oh no-what happened?”
-“What did you do?”

What we hear:

-“What did you do wrong?”
-“Wow, how’d you fuck this one up?”
“It’s obviously your fault that you’re not feeling better anymore.”

Um, no-it’s not. Healing is messy. Healing is not pretty. Healing does not follow a nice, tidy, predictable path that you can plot on a graph. Healing has no cohesive form. Healing is primal and cuts right down to the bone. Healing brings up all the dark, nasty, unpleasant, icky places-that’s what’s being healed. Healing has its own timetable, and works on its own schedule. Healing doesn’t give a rat’s ass about when you feel you SHOULD BE WELL ALREADY, DAMMIT! Healing just goes right along doing its own thing, often in spite of you.

Having one good day means nothing, except that in that particular moment, we are feeling okay. It is no predictor of anything; there is no ongoing meaning that can be extrapolated from it. It just means that right now, we are feeling good. But there’s not one single thing, good day or not, that will prevent us from feeling utterly miserable in the very next moment. And, once again, that doesn’t mean anything either.

So whenever we’re out there, bashing around, trying this, that, and the other, feeling good, feeling bad, experiencing utter unpredictability, randomness, and chaos, remember: This is what healing looks like. Please don’t attempt to hold us to anything, because right now our lives are in constant flux, from one moment to the next. There is no constant for us right now.

4. Pushing us on

What you say:

-“I really think you’re on the upswing now.”
-“I’m praying for a complete and total recovery/miraculous healing/some other extremely specific outcome for you.”
-“We’re gonna get you back to your old self again really soon.”

What we hear:

-“You need to hurry up and get well.”
-“Where you are right now isn’t good enough.”
-“You need to be somewhere other than where you are right now.”
-“Only this Very Specific Outcome that I have completely detailed in my mind is acceptable for your ‘healing’; nothing else will do.”
-“Your healing has to look a certain way in order to be ‘good enough’.”

Oh my god, this is SO. MUCH. PRESSURE on us. Because, as I might have mentioned once, or twice, or eleventy billion times, we have absolutely no control over this healing process that is taking place inside of us.

We have no idea what anything will look like once we get to the other side of this thing. And feeling like we have to somehow make our healing live up to whatever it is that you’re expecting from us, sometimes just makes us want to stay sick, because that would be a whole lot easier.

We very much appreciate your care and support, but we really need it to come in a form that is much easier, gentler, and more open-ended. Statements like,

-“I’m holding you in the light.”
-“I’m sending you lots of love and healing energy.”

are very gentle, supportive phrases you can offer us, if you are so inspired.

This concludes today’s rant. We now return you to your regularly scheduled day.

I Suck, Thanks For Asking

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I’ve learned a lot over the past 10 months as I’ve dealt with all of my ongoing health problems, but the one issue I want to address in my next few posts is this:

The Worst Things You Can Say To Someone Dealing With A Long-Term Health Challenge

Because unfortunately, I’ve had an awful lot of experience in this particular area of late.

And so, in no special order, here we go.

1. “How are you doing/How are you feeling?”

This most likely comes as a surprise to you, because you probably feel it is a sign of your care and concern to ask this question. But speaking on behalf of chronically ill people everywhere, this question just makes us feel worse. And I’ll tell you why.

Because we are shitty. And we are TIRED of having to talk about how shitty we are all the damn time.

So if you know someone who is living with a long-term illness, and you’re ever wondering how they’re doing, DON’T ASK! Instead, just go ahead and assume that they currently fall somewhere along the following Scale Of Shittiness.

10-we wish that we were dead; we don’t understand how someone can continue to be alive while experiencing such excruciatingly unbearable pain

5-able to get dressed and sit up, but not much else

1-able to function at about 50-75% of our pre-illness ability; pain is mostly managed, but still felt; and most likely we are having to deal with some new physical problem (migraines, allergies, infections, etc.) due to our compromised immune system

So remember, when you catch yourself asking us how we’re doing that, even on a “good” day? We’re still shitty, and we’re sick of talking about it. And when we’re not shitty any more, we’ll let you know. Trust us.

2. Asking us to mathematically quantify our illness and recovery for you

What you say:

-“So, did your doctor give you any kind of time line for when you’d be over this?”
-“On a scale of 1-10, where are you today?”
-“In comparison to [some other day], where would you rate this day?”

What we hear:

-“Why aren’t you well yet?”
-“You’re still sick-geez!”
-“What’s wrong with you?”
-“You must be doing it wrong.”
-“Please ‘spin’ your process for me in a way that I can understand, and that will make me feel better.”

And, most especially, “It is really upsetting me that you are so sick, because it reminds me that this very same thing could happen to me/that I am totally powerless in this situation. But I don’t want to realize that, so you really need to hurry up and get well so that I can feel better. You need to stop upsetting me by being so sick.”

HELLO! We barely have enough inner reserves to wake up every morning and face the day. We do NOT have the energy to take care of your feelings on top of everything else, nor is it our responsibility to do so. If you’re upset by our illness, then go away and figure out some way to DEAL WITH IT YOURSELF! Our illness is not about you.

That’s probably enough for today. Stay tuned for more on this subject later in the week.

On My Way To Winning “Coaching Client Of The Year”

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Here’s an excerpt from today’s session.

My coach: “So, how are you doing?”

Me: “Not so good. I’m feeling really bad physically.”

My coach: “What’s up?”

Me: “Well, I keep thinking that maybe I don’t actually need to keep taking Ibuprofen for my arthritis. So I keep stopping, and then I’m fine for a few days, and then I start to hurt again.”

My coach: “Why don’t you want to take your medicine?”

Me: “Because for some reason, I just think that I should not take medicine. Also, I just want this to BE BETTER, DAMMIT!”

My coach: “Well, isn’t it better when you take your Ibuprofen?”

Me: (blows a giant raspberry into the phone)

Update

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I’m sorry I haven’t been on here much lately. I’ve been having a lot of health challenges.

The good news: No problems with C DIF since I finished my medication in December, and they didn’t find anything wrong on any of my blood work.

The bad news: The reactive arthritis is still going strong, and could be here for 12-18 months.

They gave me some steroids last weekend to help with the inflammation, and that helped bring the pain down from a 9/10 to around a 1 or a 2. But being in near-constant pain for the past 7 months has just really ground me down emotionally and mentally, as well as physically. It’s hard not to go to the dark place in my thoughts when I feel so bad for so long.

So I’m currently spending all my time trying to figure out how to waterproof my computer, my knitting, and all my books so I can live in the bathtub, as the water helps take all the pressure off my joints.

Any good thoughts would be much appreciated 🙂

I’m Not Dead Just Yet

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You may have noticed that lately, I appear to have dropped off the face of the earth. Unfortunately, this is due to my having had a pretty major relapse in my recovery from The Autumn Of Illness. Thankfully, there has not been a return of The Hostile Alien Bacteria. But everything else-the arthritis, the fatigue, the feeling like I’m being pulled naked across asphalt all day long-that’s all back.

I finally had my first pain-free day in about a month last Sunday. And I’m tentatively optimistic, because I’ve now had 3 in a row.

So hopefully I should have a little more to say around here. I appreciate everyone sticking around while I’ve peeled myself up off the floor yet again. 🙂

The Word Of The Lord

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Since January 1st of this year, Marianne Williamson has appeared on Oprah and Friends radio each afternoon at 3 pm to teach A Course In Miracles. I first went through the Course about 5 years ago, and I thought it would be a really neat experience to go through it again under the guidance of Marianne Williamson, whose work I really admire.

I’ve been doing the daily exercises, as well as practicing applying the principles to my everyday life. Yesterday was a hard day, because I was dealing with a lot of health challenges-AGAIN-and it was making my arthritis flare up-AGAIN.

So I prayed, “Dear God, please help me. I need a miracle.” Then I got really quiet and listened.

I felt guidance and support come in, and I could tell that it was God because it was loving, kind, and gently amused with me.

“Dude,” it said, “take some pain medicine.”

Oh…right.

The word of the Lord.

Thanks be to God.