Warrior

2014 October 2
by Jenny

Lately I have had the pleasure of getting to know fibro blogger Julie Ryan of the blog Counting My Spoons. She has written some great posts lately that I’ve added to my lists of favorites, such as the post on self care titled “11 Things Those With Chronic Illness Need To Do“, and a helpful post for caregivers called, “Things To Say To Someone With Chronic Illness“.

I was honored to be asked to be a part of her Fibro Warrior series, and if you’d like to check out my interview you can read it here.

No Time Off For Good Behavior

2014 September 30
by Jenny

Last month Mr. Cranky Fibro Girl and I went to the beach with my parents, my brother and his wife, and their 2-year old and 4-year old sons. I always like traveling with my dad because his Inner Hedonist is as highly developed as mine is, so we always stay someplace nice. I also enjoy hanging out with our nephews because they find joy in the smallest things, like figuring out how to flip open the lock on the sliding glass door to our fourth-floor balcony, accidentally falling face first into the tub and sucking down half their bathwater, and other exploits basically designed to give six adults a week-long, anxiety-induced heart attack.

It was a little challenging to be around little ones for that long, but I met it by cornering the market on all the jobs that could be performed while sitting down. Block the unsteady 2-year old from leaving the relative safety of the living room carpet for the hazards of the tiled entrance hall? On it. Participate in full-contact racing with every Matchbox Car known to man? All over it. Holding the straw while someone sucks down a Capri-Sun? I AM THE FREAKING VALEDICTORIAN OF HOLDING THE STRAW.

In addition to the fun of little kids and the enjoyment of catching up with each others’ lives, it was also very mentally relaxing. I could sit on the couch, look around, and see absolutely nothing that had to get done. That might have been the best vacation perk of all.

The trip was lovely.

AND.

It was really hard. Because I was sick. As sick as I was 3 1/2 years ago when I got back from a trip to the West Coast and had to be wheelchaired off the plane. So sick, that most days I couldn’t manage the stairs in our condo. Sick enough that I had to miss like, 90% of all the fun things that everyone else did.

And it broke my heart.

Not being able to keep up or do much when it comes to everyday life is one thing; I’ve made a sort-of peace with that and figured out how to navigate my days pretty well. But to be unable to do something as easy as taking the elevator downstairs to sit by the pool was almost more than I could bear.

Part of it was being the lone sick person in a group of  healthy people. I could not ask for a more compassionate and supportive family. But the fact was that they could go shopping, go to the beach, or even just go down to the hotel lobby every afternoon at 3 to get some fresh-baked chocolate-chip cookies, and I couldn’t. And it was brutally painful to have that truth rammed home over and over again, every day, for an entire week. Illness can be a lonely, isolating thing.

It was also painful to realize that I was operating under certain assumptions about my life and my illness that turned out not to be true.

It’s been six years since I was diagnosed with fibro, and seven years since I got sick with the Hostile Alien Intestinal Bacteria, and I’ve had to come to terms with a lot of loss. A lot. But the past couple of years  have been about adding things back into my life, so I guess I assumed that the losses were over and fibromyalgia wouldn’t-or couldn’t-take anything else away from me.

But sadly I was wrong,  and that REALLY pisses me off.

Because that is NOT the way vacation is supposed to BE, and that’s the way vacation was, and vacation should be EASY, and vacation was hard, and that’s NOT FAIR, and you’re right, it wasn’t fair, and I should be OVER this by now, and I’m not over this yet, and maybe I can just give myself a break because this is hard, and sometimes being angry feels better than being sad.

So that’s what I’ve been chewing on lately, my latest attempt to bend life and illness to my will (because that’s worked out so well for me in the past). But in the glorious both/and that is my life, my favorite TV shows have had their fall premieres, I have a big celebration planned for my birthday next week, I’ve started getting into genealogy lately and have discovered cool things about relatives I never knew, I’ve got lots of fun books to read, and it seems that words are flowing for me again.

It seems that Fucking Fussy August Syndrome is finally over, and I am feeling the fun new energy of fall.

 

 

 

 

 

 

 

Featured Friday

2014 September 25
by Jenny

A collection of small treasures I’ve found while out and about.

Featured On The Blog:

The newest addition to the Resources page is a tool called The Satisfaction Finder, which was created by life coach and spiritual teacher Jennifer Louden. Given how much time I spend at home alone with my thoughts, I’ve found this tool to be a lifesaver when I’m attacked by thought gremlins preaching their different variations of, “You’re not trying hard enough to overcome your illness, you’re not doing enough in your life, and therefore, you suck.”

If you’d like more Cranky Fibro Girl, you can follow me on the social media account of your choice by clicking on the brown buttons in the sidebar.

You can click on the “share” buttons at the bottom of any post if you feel inspired to spread a little snarky love online.

If you’d like to receive news and updates, you can sign up for my email list by filling out the form at the top of this page.

Fun Finds:

Here’s an article that explains “The Science Behind Baking the Most Delicious Cookie Ever“.

And while we’re on the subject of food, it seems that “Edible Chocolate LEGOs Exist, Childhood Dreams Can Now Be Stacked And Eaten“.

Fibro:

The blog Life in Pain featured a wonderfully articulate post titled “Letter to People without Chronic Pain“. It is one of the best resources I’ve found that describes what it is like to live with chronic illness. For example:

“Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.”

And,

“Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.”

Or,

“Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.”

Funny:

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Free At Last

2014 September 17
by Jenny

(Originally published here on July 31, 2005.)

I think one of my favorite things about being in my thirties is the fact that I no longer feel like I have to pretend about who I really am (or am not) in order to get people to like me. This was not always the case.

Back during our first year of marriage my husband, who is himself an Eagle Scout, worked as a volunteer with a Boy Scout troop and I, caught up in the flush of wanting to impress my new husband, agreed to go along on one of his troop’s camping trips.

Important Side Note: If you have never been camping before, I would HIGHLY recommend that your first trip not be with a troop of scouts, because any points you feel you have gained by being “a really cool wife” will quickly fade when you realize that, compared to everyone else on the trip including elementary school students, trail dogs, etc., you feel like a giant, incompetent wuss.

I really should have known that I was in over my head when my husband and I went to the outdoor store to buy me some gear. We did not go there to buy a cool backpack, or a kicky bandanna, or a nifty trail tool. No,we went so that I could buy my very own, neon orange, plastic poo shovel.

Things kind of took a turn for the worse once we had hiked up the trail to the spot where we were going to camp that night. We had foolishly drunk all the water we’d packed, so my husband went down to the river, filled our two plastic bottles with water, ran some iodine through the bottles, and handed one to me. I looked at the bottle, looked at him, and said, “It’s brown, And. There. Are. Bugs. In. It!” He looked at me and said, (and please bear in mind that he had only been a husband for a little under a year and hadn’t yet developed the sensitivity that he has now after nine years of marriage), “Well, the bugs are dead. And we have this lemonade mix to add to it!”

Even now, eight years later, I can’t think of this story without experiencing total incredulity at his response.  And even now, eight years later, my husband insists that we would not have even had this problem, if only he had packed a darker colored drink mix.

Happily I did recover enough from this trip to start going out on day hikes with my husband and our friends. As a matter of fact I was pretty impressed with myself on our last trip, because not only was I wearing my very own pair of official hiking boots, but they were so well used that we had to patch them together with duct tape.

(Yes of course we had duct tape-I was hiking with three engineers! As a matter of fact, the only reason that I didn’t have to sleep suspended in between two trees in some kind of jury-rigged duct tape shelter was the fact that the other spouse who came on this trip was five months pregnant.)

However, there are still some hurdles to overcome before I can consider going on another camping trip, as is clearly illustrated by the following conversation I had with my husband the last time he went camping.

10:00 pm. The phone rings.
Me: “Hello?”
My husband: “Hey, Jenny. I need your help.”
Me: (panicking at all the possible emergencies that could befall campers, and wondering just exactly where I can rent an emergency extraction helicopter at 10 pm on a Saturday night) “Oh my gosh, are you all right?!”
My husband: “What? Oh, yeah, we’re fine. I just need you to get the Almanac so you can tell us the geographical size of Liechtenstein in square miles.”

Silly me-what was I thinking?! These were highly trained, highly capable, highly intelligent men. Clearly the only emergency situation in which they could possibly have found themselves would be to be without immediate access to the geographical data of tiny, landlocked, central European countries.

So anyway, the jury is still out on the whole camping thing, but between you and me I wouldn’t hold my breath.

A Tale Of Two Spouses

2014 August 19
by Jenny

(originally posted June 29, 2005)

The next post I’m republishing from my archives is one of the first stories I ever wrote about me and Mr. Cranky Fibro Girl.

In honor of today being my 9th wedding anniversary, I thought I’d write a little about how my husband and I have worked out our own particular division of marital labor in order to ensure a smooth, well-running relationship. Because there are certain things they just don’t cover in premarital counseling, such as how to adjust to the fact that each of you deals with stress differently.

When it comes to handling stressful situations, my husband is in charge of Being Calm, which is best illustrated through the following story.

After we’d been married for three years we bought our first house, and after we’d lived in our house for six months we had a really bad ice storm. We thought the worst that happened was that we lost power, but we soon discovered just how wrong we were when I walked into our bedroom and saw a GI-NORMOUS tree sticking through the roof.

Naturally I called for my husband, and he responded by saying, “What?” Now I’m sure you can picture this situation, so you know the tone I was using. It was not, “Could you please come in here when you get a minute, hon?” It was, “COME! NOW! BAD!” Fortunately he decided to amble in and see what was going on. That was good because I only had the one yell in me, and then I lost all ability to speak and was reduced to quiet whimpering.

So he came into the room while talking on the cell phone to his dad, saw the giant hole in our roof, and… started describing it in precise, rational, scientific terms to his father. Like, “Hm, the hole is about the size of a dinner plate, and the tree is protruding approximately eighteen inches down from the ceiling.”

And I’m standing there looking at him, the love of my life, the man I waited seven years to marry, and I’m thinking, “Who are you, and what is the MATTER with you?! Why are you not freaking out when CLEARLY that is the response called for in this situation?!”

But this is where the whole division of labor thing came in handy, because he calmly organized some roof triage, and I got to come up with a funny story to tell people.

However there are some times when being calm can backfire on you, and that is where I come in. So in addition to Getting To Do All Of The Freaking Out, in stressful situations I am also in charge of Reasonable Expectations. And I have a story for that too.

About a month after moving into our house, things were going well. I was enjoying unpacking and decorating, and I had just gotten a new job working at a bookstore, which is something I always wanted to try.

One day my husband came home from work and announced that there was a position open at his job for someone to go to Denmark for a year. And he thought we should go. And…he was serious. He honestly believed that this was absolutely the best, most rational, most logical next step for the direction of our lives. And he was upset when I responded by bursting into tears and crying for like, an entire day. He said, “I don’t understand why we can’t discuss this rationally.”

So here we are six years later (still living in America), and we’ve gotten our routine down pretty well. He is in charge of Things That Sting, Time, Calling People On The Phone, and Knowing How To Get Around In Any Given Location, and I am in charge of Funny Smells, Sneaking In Decluttering So He Doesn’t Notice It, Knowing Things About People, and Holding His Drink When We Go Out Somewhere.

It works for us.

Featured Friday

2014 August 15
by Jenny

A collection of small treasures I’ve found while out and about.

Featured On The Blog:

So a few years ago, I decided to join Toastmasters. I’ve always been pretty comfortable getting up in front of people; all through high school I performed on the piano in recitals, competitions, and plays, and then starting in grad school I was a Spanish teacher for a number of years. But I wanted more practice in getting up and telling funny stories, so that’s what did (or, tried to do at least) in my speeches.

The following year I took a class in stand-up comedy, and at graduation performed a 4-minute routine on stage, in a comedy club, in front of actual, live people. This remains the scariest thing I have done in my life so far, and consequently is one of the things I’m most proud of having done.

My speeches and my comedy routines were all recorded, and can be found on my Podcasts page; they’re a little something you can listen to when you need a bit of a pick-me-up.

If you’d like more Cranky Fibro Girl, you can follow me on the social media account of your choice by clicking on the brown buttons in the sidebar.

You can click on the “share” buttons at the bottom of any post if you feel inspired to spread a little snarky love online.

If you’d like to receive news and updates, you can sign up for my email list by filling out the form at the top of this page.

Fun Finds:

One of the basic, guiding principles of my life is the belief that there is no such thing as too many books. Therefore, I was delighted to discover the site Book Bub, which sends you a daily email full of “limited-time free and discounted ebooks matching your interests”.

Fibro:

In her latest blog post, Why don’t you just know how to help me?, Lizzy, of The Pillow Fort, shares how she was inspired to put together a list of how her friends and family can help her when she’s sick and in pain. She also shares a free, downloadable template that you can use to make a similar list for your loved ones.

Funny:

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The Telltale Tock

2014 August 14
by Jenny

While I am off dealing with Fucking Fussy August Syndrome and refreshing my blogging mojo, I’ll be re-publishing some posts from my early blogging years. This is the first time I ever talked publicly about not wanting children.

(“The Telltale Tock,” originally published here on June 26, 2005)

Image courtesy of FreeDigitalPhotos.net.

I’m at an age now where I’m apparently supposed to be feeling the “pull” of my biological clock. But I’ve been thinking about this a lot lately, and I’m pretty sure I was absent the day those were passed out.

Since this same time last summer 10 of our friends, family members, and co-workers have either gotten pregnant, had a baby, or begun the adoption process. And every time a new baby shows up, I truly believe that this time, I’m going to”get” it. I’ll be around this precious new life, and my own maternal whatever-it-is will finally just kick right in.

Instead, it usually goes something like this:

Someone sends out pictures of their new baby.
Other people’s response: “Oh, what a sweet baby.”
My response: “Wow! That looks just like a tiny, enraged monkey.”

Or, someone has brought their new baby over to show it off.
Everyone else thinks, “Oh, I want to hold the baby!”
I think…Nothing. Because I am frozen in panic. Because I know the second I touch that child everyone in the room will see that being around a baby isn’t making me want one of my own. And then my secret will be out. I am a girl, and I don’t want a baby.

Although truthfully, it really isn’t that much of a secret. Even babies know I’m not a baby person.

Once when I was in my early 20′s my then-boyfriend (now husband) and I were visiting friends who were in the process of moving. Because I was a girl (and, admittedly, not much help in the heavy lifting area), I got elected to stay with the couple’s 2-year-old daughter. Everything was fine at first but then she needed her diaper changed, and despite being a competent, college-educated young adult, I had never before changed anyone’s diaper. As a matter of fact, I am 32 years old and I have STILL never changed anyone’s diaper. (I know; some people are just lucky).

[Edited To Add: I am now 41 1/2 years old and am still going strong on the no-diaper-changing front!)

Anyway, this poor child was so desperate to have her diaper changed that she spent the last 30 minutes or so before her parents got home walking into her room, pulling diapers out of the bag herself, and bringing them to me in an effort to get the process started. Those were some of the longest 30 minutes of my life. It’s a pretty low day when your personal competency is exceeded by that of a 2-year-old.

So the fact that I’m well into my 30′s and this baby thing just isn’t kicking in for me has got me to thinking: what if I just don’t have it? What if, just like there are some people who can’t see certain colors, or some people who can’t hear certain tones, or some people who are missing the gene that allows you to curl your tongue, there are just some people who are born not wanting to have babies? What if, instead of spending all of my time worrying that I am some kind of aberrant freak of nature because I’m female yet have no desire to reproduce, I could let myself off the hook about this, and start noticing what I AM good at?

Because the truly ironic part of this story is that, while I get brain-freeze around anyone under 12 years old, I am TERRIFIC with teenagers. Just at the point when most people throw up their hands and no longer have any idea what to do, that is exactly the point where I have become somewhat of a pro-a natural, if you will.

[Edited To Add: When I originally wrote this I had my own business tutoring high school kids in Spanish. I had to quit when I got sick seven years ago. I'm hoping that one day I have the option of picking this up again.]

I suspect that the reason I was missing from the biological clock line was that I was first in line at the “Talking To Teens” station. After seeing everyone who was waiting over in that other line, I knew that one day they were all really going to need my help.

F*&%#ing Fussy August Syndrome

2014 August 12
by Jenny

For various and sundry reasons, August has always been a difficult month for me.

I am SO OVER summer in the South. I am tired of being hot and sweaty all the time. I am impatient with this transition time between seasons, and I want fall to be here RIGHT NOW, DAMMIT!

I feel ghostly emotional echoes of that weird limbo time between the end of summer vacation and the beginning of school, where you’re mourning the end of the one, and (if you were me at least), impatiently awaiting the beginning of the other.

I am bored of EVERYTHING: my books, my TV shows, my blog, my hobbies, my ideas, my thoughts, my house, my chores, my errands, my lawn, my To Do list, my body, my meal ideas, my clothes, gravity, the need to stop and eat food, and the fact that I am required to breathe air in order to live. Pretty much every single atom that makes up my physical, mental, and emotional existence I declare to be stupid, dumb, boring, yucky, and poopy.

Basically, I just throw a giant temper tantrum.

This one is a bit better than meltdowns I’ve had in the past. I haven’t swept through the house, dramatically declaring that I am a talentless, unoriginal hack who couldn’t write a good sentence if my life depended on it, and who will clearly never have another good story idea, ever again, FOR THE REST OF MY LIFE!, and therefore I have no choice but to erase every trace of my blog off the face of the digital earth.

I haven’t had bad mood swings or manic-depressive episodes, thanks to good medications and recent, healthy changes in my diet.

But I am just pretty much sick of everything.

I was talking about this with Lynne last week during our session, and she said, “So it sounds like you’re just feeling kind of fussy,” and then we were both hit with the realization that, oh, I was obviously suffering from Fucking Fussy August Syndrome, or FFAS, for short. (Clearly, our pioneering discoveries in personal growth research know no bounds.)

Just recognizing that I am weary, and worn-down from pain, and tired of my full-time job of managing a chronic illness, and sick of all the million and one things that we all have to do to keep our daily lives functioning, has brought some relief. As has just letting myself feel fussy (but not so much that it runs me).

So I’ve decided to give myself this month off. I’m not exactly sure what that will look like, but just giving myself permission to let go of things if I need to has quieted some of the inner yelling.

I may or may not feel inspired to write, so in case I don’t I’ve decided to re-run some of the posts from the early years of the blog. I hope you enjoy them.

Here’s to some less fussy times ahead.

 

 

Good Words

2014 August 4
by Jenny

Happiness is absorption, being entirely yourself and entirely in one place. That is the chapel that we crave.

~Pico Iyer

Featured Friday

2014 August 1
by Jenny

A collection of small treasures I’ve found while out and about.

Featured On The Blog:

Back in the early, more hostile days of Cranky Fibro Girl I wrote a manifesto born of my frustration in dealing with the medical establishment. I’m fortunate to have found really good, supportive doctors over the past five years, but that was not always the case in the beginning.

If you’d like more Cranky Fibro Girl, you can follow me on the social media account of your choice by clicking on the brown buttons in the sidebar.

You can click on the “share” buttons at the bottom of any post if you feel inspired to spread a little snarky love online.

If you’d like to receive news and updates, you can sign up for my email list by filling out the form at the top of this page.

Fun Finds:

This article describes how “Chilean architects from Undurraga Devés have recently worked with members of the indigenous Mapuche community in Huechuruba, near Santiago, to help build a very specific type of housing: a place that would not only meet their basic needs, but also respect their traditions and ideas. ”

This is a story about a dad who made his little girl a real-life princess by finding and claiming an unoccupied space in the world.

Fibro:

I love the tagline of The Pillow Fort magazine and community: “Making chronic illness suck less”. Lizzy, the founder of the site, has just published the third issue of her ezine.

She’s also posted an article by one of the members of the community on “An A-to-Z of Self-Care”.

Funny:

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