Showing posts with label ouch. Show all posts
Showing posts with label ouch. Show all posts

Aug. 30: Updates on the ouchies

Except for complaining about being tired and complain-y, I haven’t blogged much about my health lately. I guess this is mostly because it’s same-old, same-old, and I was determined not to turn my blog into all-cancer-all-the-time after my diagnosis. Still, there are people who come here specifically to read about what’s happening with me health-wise, so I feel a bit obligated to give updates when I have them.

Ever since I started my follow-up chemo regimen in May, my joint pain has been 5-7 on the pain scale. My oncologist said it was probably well-managed on my CHOP-R regimen with the “P” (prednisone) and the steroid in my new regimen (decadron) doesn’t do the same trick. The interesting thing is that the major component of my new regimen is “R” (Rituxan), which is commonly used to treat rheumatoid arthritis. Seems strange that my joint pain would return, doesn’t it?

The pain isn’t unbearable every day, and it’s not even close to what it was like before I was diagnosed with “an unspecified auto-immune disorder” in 2005. Still, it’s uncomfortable. Wakes me up at night. Makes it hard to stand up after being seated for a while. Makes it really uncomfortable to sit in a car for very long. Worst of all, it makes me not want to exercise. Exercise would help the pain, but it hurts too much to exercise. That, my friends, is why I’m quite sure God is a big ol’ practical joker.

My oncologist had kinda blown off my comments about joint pain, so even though I felt she should make some suggestions, I knew I needed to see my rheumatologist if I wanted a doctor who would listen and help me manage the pain. He’s always scheduled quite a ways out, and between the day I made the appointment and today, the day of the appointment, the pain nearly disappeared for a while. I considered cancelling but I’m glad I didn’t.

What I appreciate so much about this doctor is that he asks questions about a lot of areas of my life, not just pain and how I manage the pain. He asks how I am emotionally, what kinds of stresses I have in my life, what my husband would say about me if he were there, etc. He knows that the kind of pain I have can be dramatically changed by things that seem unrelated.

He, too, wondered why Rituxan wasn’t doing a better job with my inflammation. He said Naprosyn was fine if needed (it takes the edge off the pain; I just try not to take it often) and suggested some deep water exercise. I’ve been wanting to do that anyway, so I’m hoping to start next week when the kids are back in school. He also suggested some specialty rehab. I’ll call this week to get that started. I was glad he didn’t just suggest drugs—I don’t want any more drugs.

He also encouraged me to see a shrink. He recommended one when I first saw him in 2005, right after my dad died, and my visits to that therapist became a couple years’ worth of grief counseling. I found it very beneficial. I’m going to try a different doctor this time. I liked the other one but I’ve seen him at functions at my kids’ school and that’s weird now.

The other thing Dr. Rheumy recommended was seeing a mental health nurse practitioner to get my medications figured out. I haven’t talked about depression and anxiety much on my blog—except in a joking way because, like cancer, you gotta laugh at it or it’ll gitcha—but here’s the fact: I deal with depression and anxiety. If you’re gonna go all Tom Cruise on me and tell me what I’m doing wrong, you can fully expect that I’ll flip you off five thousand times as I walk away from you forever. If you think people who take antidepressants are crazy, you are also cordially invited to go screw yourself. If you haven’t dealt with depression and/or anxiety, just do the world a favor and shut your big, fat mouth. And if you’ve been diagnosed with a killer disease and you have to… oh… say… go home to your young children and tell them Mommy might die, you are totally allowed to feel both depression AND anxiety. So says I.

(…Thinking I think I might need to talk to that mental health nurse practitioner about my pre-emptive anger issues too...)

Finally, we spent quite a bit of time trying to figure out what’s gone wrong with my left hand. He did not seem impressed that my oncologist blew it off with a “you probably slept funny.” Although the rheumatologist thinks physical therapy would be good for the long term, he suggested we start with a shot of cortisone. It’s kind of a band-aid fix, but the pain has been severe enough that we need to get rid of that part first. I was lucky enough to get an appointment for tomorrow, so as soon as I’m done with chemo I’ll get my hand poked all over again but with something that should make it hurt less.

He also asked why I didn’t get a port when I started chemo. So I screamed and tore everything off the walls and jumped up and down and cried and screamed some more and then calmly sat down and quoted that guy at the dump on the muffin tops episode of Seinfeld: “That’s what I’d like to know about it.”

Dr. Rheumy gave me five different recommendations for a new primary care physician, so I shouldn’t have to go back to Dr. Jackass again. He also very subtly suggested that I could change my oncologist if I want to, but I really don’t want to. I’m not thrilled with absolutely every move she’s made, but I do trust her with handling the cancer.

My favorite part of the whole appointment was at the end, when the doctor said, “So, we’re NOT sending reports to [Dr. Jackass] anymore then?” and I got to say HELLS YEAH. But I didn’t actually say that because he’s too nice to say the h-e-double-hockeystick word in front of. Also, Jack was with me and he would have told Vic that I said a naughty word. So I said, “No, we don’t need to.”

It was awesome.

So that’s the latest on my health stuff. I’ll have more to say tomorrow after chemo #14 and my cortisone shot.

Jul. 12: The whining and the ouchiness

I don’t know what I did, but my left hand is all jacked up. It’s messing with my ability to use my iPhone. I know! I don’t know how I’m surviving this either.

I like having opposable thumbs. I use them. Well, I use my right one, anyway. My left one is being a real a-hole. I know all the moving of boxes and furniture over the weekend couldn’t have helped, but seriously, Thumb. I kinda needja. Here’s why:

  • When I drive, I hold the bottom of the wheel with my left hand, and hook my thumb around it. Now I can’t, because it hurts. So now I drive crazy. You’d best get out of my way.
  • When I use my laptop, I tend to “drive” it like I do my car. Now I can’t, because it hurts. So I cry.
  • When I hold my phone and do very important things for hours at a time, I use the index finger and thumb on my left hand as a stand—they’re pretty perfect for that. Now I can’t, because it hurts. I figured out that if I use a boob, I can almost get my iPhone to stay upright. Whatever works.
  • When I pick things up, I often enlist the use of my thumb. Now I can’t pick things up, because it hurts. So I whine a lot more than normal, and I knock stuff around because I’m angry. HULK MAD THUMB HURTS!
  • When I open the washer or dryer doors, my left thumb comes in handy. Now I can’t open the washer or dryer doors. So I don’t do laundry. I don’t know how long I’ll be able to get away with this.
  • When I think, which I do almost constantly, I rest my chin in my left hand and tap my thumb on my jaw. It’s very “The Thinker” (not really) and I look like an idiot if I can’t do it just exactly that way at all times. Girl, you know it’s true.
  • When I sleep, I look like an angel. That has nothing to do with my hurt thumb; I just wanted to brag a little.
  • I’m afraid my promising future in thumb wrestling may be over. My dreams have died.

Why am I telling you all this? So you’ll feel sorry for me. So you’ll understand the lengths I go to for you, my adoring public of four, in keeping my blog updated even when it’s causing me great pain. It’s for you. It’s all for you.

May 2: So thankful

I had a busy weekend. It was full of friends, and it made me smile a lot, those good smiles that will keep coming back to me in the week ahead. I feel so fortunate for the people I have in my life; the ones who kinda have to be here—my mom, my sister, Victor—and the ones who choose to be. The ones who periodically show up with a kind word or a funny memory, the ones who just say “I’m thinking about you.” It’s a lovely thing, having people around who care.

Being sick makes me more appreciative, of course, and I assume that it also makes others feel a more urgent need to share their feelings. I treasure both of those things. And there’s one thing of which I am sure: my gratitude is sincere. I’m, like, the biggest bitch EVER when I’m feeling rotten, and if I can feel gratitude in the midst of my one-week-post-chemo pain, I know it’s the real deal.

And that’s where I am right now. I’ve described the feeling before as why-did-I-spend-all-that-time-rolling-in-gravel???, because it hurts everywhere. Everywhere. It hurts when I sit and rest my back against my chair. It hurts to be hugged, even lightly. It hurts to roll over in bed. It hurts to stand, to take steps, to turn my head. The pain doesn’t last more than three days or so, and once it starts to dissipate, it happens quickly. The exhaustion hangs around a little longer, but it’s more tolerable—well, it can be napped away, at least. So, y’know, the pain is awful but it doesn’t last forever, and I’m glad for that. In the middle of it, though, I’m not a nice person, and I’m pretty sure my mom will back me up on that.

So I thank you for being patient with me, and for being patient with how the suckiness of cancer sometimes dictates my behavior and mood. It’s not fair that I have to deal with it, but it’s even worse that you do. I’m glad you’ve stuck around and continued to be good to me. I probably don’t deserve you but I’m happy you’re here. Really. You’re all kinds of awesome.

Everyone else? Well, you can just bite my big white arse.   

Oct. 11: Post uno

request

I guess I’m not the only one who wishes I spent my weekend doing something other than weeping about how little sleep I’m getting and how much pain I’m in. For reals, I’m about to ruin whatever internal organ gets ruined by taking too much ibuprofen. I’m trying not to take drugs any more often than I absolutely have to, but I need to get at least a little bit of sleep and I can’t sleep if I’m sobbing. I haven’t been blogging because I don’t want every post to be all complain-y. At this rate I’m going to need to change the name from Stuff Jen Says to All Whining, All the Time—Now with More Whining, OMG So Much of the Whining!

For the past hour I looked for something I could post, a link to a funny thing or even a meme. No luck. Pfft.

Here’s a photo my FB friend Corinne posted the other day. I think it’s awesome.

Sorry, Loveliest Lori. I tried. You’re getting quantity, not quality, at Stuff Jen Says today.

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Sep. 14: September showers bring tears

A few years ago I bought one of those sunflower-like shower heads. You know the ones; they’re supposed to feel like rainwater falling above you and make you forget all the bad things in life. I thought I’d give it a try because I like to spend my money on stupid stuff.

But surprise! This new shower head was immediately my favorite thing ever to show up in my bathroom. I almost wrote about it in our Christmas letter that year, because OH, THE HAPPINESS IT BROUGHT TO MY MORNINGS. It was gentle and quiet, and yet, morning after morning, there was somehow plenty of pressure in which to rinse the shampoo from my hair. Gravity can be awesome, I tell ya. They say the water falls from this shower head like rain, but it really was much, much lovelier than that. The closest comparison I can make to what it feels like is this:

(that’s rum, folks)

When the kids started choosing showers over baths, they always wanted to shower in our bathroom rather than their own. They’re messier in the bathroom than any kid ever in the history of the world, so allowing them to use our bathroom was not the best decision we ever made. Katie insisted she didn’t like the shower head in their bathroom because “it makes the water hurt.” I’ve blogged before about what a giant weenie she is with pain; I’m all WHATEVER, it’s a standard shower head:

(how can that hurt?)

And then I took a shower in the kids’ bathroom last week. You probably heard my cursing and screaming all the way to Wisconsin. The water comes out and hits the showerer (that was me) with such pain and surprise, it feels less like water coming out of the shower head and more like someone shoved a bunch of these up in there:

(the sharp ends)

That is, except for the “dead” spots—there are areas where very little water comes out at all. Those streams feel like this:

(oh yeah, it’s a cute bunny, but worthless for rinsing soap)

And then there’s the spot here and there where no water comes out at all:

It makes the simple things, like rinsing soap off one’s body, nearly impossible. If you stand in just the right place, you won’t even need a towel when you’re done. ‘Course, you’ll still stink like a mo-fo too.

We traded shower heads with the kids because we want our bathroom back and I figured if I’m reminded every morning how much their shower head sucks, I would be more likely to replace it in a timely manner. Two mornings into this experiment, I’m ready to kill every engineer at Moen or Delta or whatever company made this thing, and I’m also getting a new sunflower shower head on the way to work this morning.

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