Deliciousness Of Rain

The pain creeps up from my toes, and I don't know why. Flu? Fibro flare? Whatever, it's unwelcome and ill-timed. 

I grab for my solutions, the things I expect will make it better, and they mask it for brief moments, and then I'm forced to admit The Ick is winning for today. 

Between its wins, I fit mine. 

Children parented, conversations of importance, boxes unpacked, and clothing sorted. Counters are wiped, and towels are folded.

Small wins. Big wins.

Date nights and gardens tended.

Love.

Dreams.

The scent of the first rain sneaks in through our window. I grab it as it passes over my tea.

A little win. 

I put these wins together into a box I keep to show to myself when I forget. I say, See! You are a winner! Look! 

I pour them out into a pile and feel them tangle between my fingers. All of the wins. The big ones fall to the bottom of the heap. The little ones are plentiful and the easiest to see. 

I vow to add more, even if I have to squeeze them in between the losses. 

The Importance Of Taking Sides

What can I do, you ask me? How can I make it better for you? How do I ease your pain?

Take my side?

Of course. No hesitation. Not a millisecond.

Phones, pillows, water glasses are moved in less time than it takes to run a red light.

Will it work? Will it fix my pain? We don't know. I don't know. You don't know.

What is known is that you take my side; I take your side. In an instant. Just because it might help.

We give our best and the most to the people we love because their journey is our journey.

Better together. We really are when that's how we see ourselves—together, as a team.

My Body Stole My Hair: A Poemish Thing

My body let me wake up today, which was sweet of her.

Then she decided to knock me back out for about three hours when I really had better things to do.

I wish she’d ask me about my plans for the day before she does these things.

Cunt.

And we need to have a meeting about the condition of my shoulder. Quite sore. I get the feeling she’s been out partying while I’ve been home playing house with the Brady Bunch.

The voice came alive inside her head.

Pumpkin Farts?

It's 1:30am. My bedroom smells like pumpkin farts and a cold I'm tired of having. Depression is wrapping its bony fingers around my shoulders as it often does when I can't do things—when I'm useless. It's the catch-22 of mood and mend. I don't feel well, can't do, therefore don't do, therefore feel badly about not doing, and the spiral of loathing begins.

Fortunately, I think and hope, I have some kind of clarity about it this time around. I also have people making sure I know it to be okay. So important. Also, writing. And pictures. And sunshine. Amen for sunny days and fresh air. Even a few rays sneaking in through sunlights and open windows make a huge difference. Eventually, the tunnel of suckitude will cease, and I will feel better.

Colds shouldn't knock me on my ass like this. The more I read about fibromyalgia, the more it makes sense that they do, but I hate to think that's the case. Big pile of crap.

I feel like a character from a Victorian novel. Truly pathetic. Fetch me a hot water bottle, and lock me away in a room on the third floor.

And why pumpkin farts? Is the ghost of Thanksgivings past ripping ass under my bed? Oh, NyQuil, what have you done?

Battling Demons: Things That Go Bump In The Night

battling demonsI suck at sleeping. Have my whole life. I did a great sleep training program through Kaiser (my health insurance company) that worked wonders, but that was before Bob got sick and LIFE happened.

Now, my sleep is royally fucked up again. I haven’t had the energy to repeat the program, which is, ultimately, what I’m sure I’ll need to do. Until then, I’m relying on a last-resort medication and the luxury afforded to me by not having a job that requires me to work 9-5, kids who are also vampires when it comes to sleep, and a flexible homeschooling schedule.

HOWEVER, that’s not really helping my second issue, depression. When my sleep is fucked up, it feeds the depression. I don’t get enough time outside, I don’t get enough daylight hours, and the cycle turns into lather, rinse, repeat.

This ALSO works well to feed the chronic pain associated with fibromyalgia. You see where this is going? Yes. A giant pity party for which I refuse to send out invitations. UGH. I have no patience for this crap. I have no patience for myself.

My hair has been falling out at such an alarming rate, I told my doctor I’d be bald by Christmas if she didn’t help me figure this out. Fortunately, there was one big clue (in addition to the OMG has anything stressful happened in your life?), Vitamin D deficiency. It turns out that NOT spending countless hours outside and in the hot tub soaking up the sun’s rays has been a problem. Supplements have been started. Fingers have been crossed.

Now, pass me a tissue because I feel another crying jag coming on. For a woman without a uterus, I sure wish I could skip the chronic PMS. (Really questioning the wisdom of keeping those damn ovaries right about now.)

Oops. That was probably a bit more information than y’all were looking to find out about me. I’ll try to skip my pap smear and mammo results. I said I’ll try. No guarantees. It is my blog.

Psst…I’m going to post something fun over on my review blog pretty soon. Like, within the next 24 hours or I’ll turn into a pumpkin, and not one that’s been made into a pie, so don’t encourage me. Stay tuned. It might have to do with a game whose name rhymes with Must Pants Poo. And there might be a giveaway. Shhh…keep it down.

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Vicodin Is Good

the wait

Image by califmom via Flickr

Bless ye Vicodin for easing the pain in his bones caused by the Neupogen shots o’ plenty. Shots he did get. A grand total of 8 Neupogen shots, plus the Neulasta shot, which is the equivalent of 10 Neupogen shots. The job of Neupogen and Neulasta is to stimulate the bone marrow into making neutrophils.

My husband does not cry. He didn’t cry when out babies were born. He didn’t cry when he dislocated his shoulder. He didn’t cry when his grandparents died. He’s not callous, he just doesn’t cry. This pain? It had him whimpering like a puppy. All. Night. Long.

Fortunately, he had an appointment with Dr. W on Monday. He planned to tell Dr. W the pain was “pretty bad.” I nearly punched him in the throat. I then helped him practice articulating just how bad the pain really was—on a scale of 1 to 10 (9); when you were brushing your teeth and bent over to spit (nearly passed out); while you were sleeping (could not sleep); as you were getting dressed (had to wear slip on shoes). Hell, I had time to park the car in the time it took him to walk to the building. He couldn’t move. Only his pride stopped him from using a wheelchair.

Vicodin. I gave him the maximum dosage when we got to the car. He asked if I was trying to give him too much. I told him to shut the fuck up. Forty minutes later, he said he could still feel the pain a little bit, but it wasn’t as bad. I told him to shut the fuck up and the next time I told him I knew what I was talking about regarding pain he needed to listen. Fucker. He only needed it for the next 12 hours or so, but he definitely needed it. A body in pain can’t rest or recover. Thick. Skull.

Good news: his white blood cell count and platelets are back up into safe ranges. He still has to be careful, but he should be able to avoid a blood transfusion and more Neupogen shots until the next round of chemo (which won’t happen until the first week of January).

Thank you all for keeping us in your thoughts and prayers. This is a much rockier road than last time. The cancer seems more aggressive, and this chemo regimen is ruthless. He’ll be going for a hearing test later this week to make sure one of the chemo drugs isn’t causing permanent damage. If so, the doctor will change the regimen for the next cycle. They want to kill the lymphoma, but don’t want a permanently deaf Bob.

It’s been harder to keep it together (physically and mentally), but dammit if our friends and family haven’t been here once again to wrap some duct tape around us just when we’re about to lose it.

Y’all make our socks go up and down. We love you.

And for those who keep asking about my nether regions, my second round of MRIs showed that I’m a normal degenerate (no more degeneration to my spine than they’d expect for my age). I have an appointment to see a neurologist on Monday to continue to pursue the mystery that is My Fucked Up Back. Until then, I hump my ice pack like a trouper. Or it humps me. Because, technically, it’s behind me. I’m not behind it.

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News In Small Doses And What Your Mother Meant About Wearing Clean Underwear

Various styles of panties

Image via Wikipedia

There’s some line about God not giving you more than you can handle. Apparently, we’re not getting more information than we can handle. At least, not today, which is fine.

Let’s start with the shit news. Get it out there where we can smell it.

Dr. W and Bob talked briefly today. The cancer is back and widespread, which explains the rapid return of the symptoms. We meet with Dr. W on Wednesday to discuss the treatment details. For now, all we know is that chemo will be two days each time instead of one.

Tomorrow, Bob will need to do a MUGA scan to confirm his heart’s in good shape for chemo, which he would like to start on Thursday. Dr. W is on board with this request assuming the MUGA looks good, which he expects it will.

And, good news, Bob’s bone marrow is clear. No cancer there. Fuck yeah! We’ll take that one.

While Bob was gathering all this news from Dr. W, I was driving my numb butt/spasming back to the Spine Clinic to meet Spine Doc. I dressed in yoga pants thinking I’d be needing to show my range of movement to the doctor. Maybe do the splits. A pirouette.

Yeah, so when your mom tells you to wear clean underwear, she means granny panties. And here’s why:

I was led into the exam room by Nice Nurse. Nice Nurse took my history as I did Lamaze breathing because my fucking back fucking hurt. Nice Nurse said Spine Doc would want to do an exam so I’d need to disrobe from the waist down.

No problem. I’ll strip. Gown.

Nice Nurse kept talking. Nice nurse said I should leave my underwear on. The gown would open in the back.

HOLD UP.

BACK UP.

There are only two types of underwear worn with yoga pants:

  1. None.
  2. Thong.

Knowing I’d be going to the doctor, I’d opted for #2.

And, having seen the patients exiting Spine Doc’s office prior to me, most of them using canes, all of them a good 30-40 years my senior, I’m guessing my ass was, even at 40 years of age, one of the firmer asses he got to see today. And the only one in a thong.

Dignity. I left it there. Right where my naked ass cheeks stuck to the paper.

Fuuuuuck. And I still don’t know shit about what’s wrong with my back. But, Spine Doc is going to do another MRI, I’m going to see some more specialists to see if they can unravel the mystery from other angles (yeah, laugh), and see if I can’t find some suitable granny panties. Maybe something with a nice daisy print.

Now, time to hit iTunes for some downloads to entertain us during chemo. We’re gonna need some funny shit to get us through this round.

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And Now, We Wait

I am not a patient person, but I’m learning. I’m being forced, like a buttered-elephant through a rabbit hole, inch-by-buttery-squeaking-inch, I learn to wait.

I learn to wait to be able to pray again.

I learn to wait for Bug’s tics to settle so he can sleep.

I learn to wait for my own sleep to come.

I learn to wait while my back heals from overdoing it the day before.

I learn to wait for doctor’s appointments.

I learn to wait for test results.

I learn to wait for answers to questions I don’t really want answered because I didn’t really want to ask them in the first place—What’s the prognosis? What is the stage? What is the treatment protocol? When will it start? Will he make it? Where will we be for Christmas? Will there be a next Christmas? How will we do this? Will I be strong enough?

Why?

Why?

Why?

And then I remember I’m a buttered elephant in need of a shower. Have you ever tried to fit a buttered elephant into a standard-sized shower? Fuckin’ A.

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The Family Tard Cart

If I could afford it, this would be our family car.

cool_20short_20bus

Instead of shirking away from the word retarded, we embrace it. Steal it’s power back.

If this was our car, we’d paint “Family Tard Cart” on the side in gothic letters and cruise around town with pride.

Why? Because that’s who we are. We’re all special. And we rock. We have acronyms and long words after our names like ASD, TS, OCD, ADD, and Depression, and Migraine, and Fibromyalgia, and we’re crazy homeschoolers, too. Oh, Lord!

I think it’s high time the special needs population reclaimed the words used against them.

It wasn’t that long ago that “queer” was an insult. Now there’s a Queer Nation.

Not so many decades ago, my son would have been locked away, considered possessed in some cultures. My daughter would have been thought too nervous and fragile. I would have been kept on the upper floor, never seen, and seldom referred to. Now, thanks to modern medicine, and education, we roam free. Scary, huh?

There’s no reason our short bus has to be ugly. There’s no reason for us to hide in shame. There’s no reason for us to let words like “retard” belong to our enemies.

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