Nerve-Wracked ~ by Sam

Peace12:21:17.JPGIt’s the evening of December 21st, and I am not rushing around checking things off my shopping list.  I’m not baking sweet treats, wrapping gifts, cleaning up after our annual Tree-Trimming party (or planning for yet another very late one, because we didn’t get it together and plan one). I’m not planning to receive out-of-town guests, or planning my out-of-town trip for Christmas (‘though we will be heading out of town soon after).

Nope.  Not doing any of that.  Which is weird, because, normally, this close to Christmas, I’d be running around like that chicken you always hear about.  Right now, I’m lounging on the sofa after a nerve block at 2:30 this afternoon.  I debated posting about what’s been going on lately.  I feel like I’m THAT FRIEND.  You know the one.  The one that talks too much about their health problems?  And so…I just didn’t really say anything about this for a while.  Honestly, when the CRPS started flaring up again, I thought, “Well, I haven’t been walking every day, and I haven’t been great about doing my PT, and I had to lower the dose of my medication because it interacts with the medication I have to take for that other thing, and makes it really hard for me todo things like stay up late, and get homework finished, or help kids with whatever they might need, or, you know, wake up in the morning and make sure everyone gets off to school without a hitch….so…it makes sense that it’s flaring up now.”  I decided to try fixing those things.  That should work.  Right?

But it didn’t.

So, when I contacted my pain management doctor and explained the situation, he, naturally, wanted to see me.  After assessing the situation he determined it wasn’t just flaring up.  It was progressing.  The pain was moving much farther up my leg than it had in the past, and that is not a change we want to see.  We discussed various options.  Since I can’t stop taking the other medication, upping the dose of the medication I currently take for CRPS is not a great option, since it is already, in combination with the other med, making me very sleepy at night (which, at least, is the right time to be sleepy ~ and, hey, it’s a solution to my longstanding battle with insomnia).  Adding another medication at this time is also not at the tops of our list since a) I currently take two daily meds, and b) the other meds we might consider adding next are things I had already tried, without much success, as treatment for fibromyalgia symptoms years ago, so he doubts they would be helpful here.  Because we have had success with lumbar sympathetic nerve blocks in the past, it seemed like a no-brainer.

The only downside was the timing.  Due to both the amount of pain I was experiencing, and the fact that the CRPS was progressing and we needed to try to nip that in the bud, it was important that we get me in for the nerve block ASAP.  Right now.  You know, at Christmastime.  Me.  Right now. At Christmas.  Because it’s not like there’s other stuff I would rather be doing.  Like going to parties.  And hosting a party.  And baking stuff for teachers, and friends, and family.  And decorating my home.  And buying and mailing gifts. And going to Mass.  And attending shows and concerts. And driving through all of the lights, and walking through the Zoo Lights, and visiting with friends, and shopping.  Did I mention shopping?  Shopping?  Shopping with my kids!  I want to be shopping with my kids.

But instead, I am sitting here, resting, for several days, in hopes that this nerve block does the trick; because, quite frankly, if it doesn’t, I’m back to not doing a lot, which is kind of what I was doing before, in case you hadn’t noticed.

By the way, if you had noticed, recently, that I kind of had my head in the sand, well, now you know why. Things started getting bad while school was in session.  So, I suddenly found myself needing to juggle kids’ schedules, my schedule, Shane’s schedule (you know, the usual stuff), but with a lot more pain than usual.  I am used to pain.  I have pain that I manage ~ hence the pain management doctor ~ but that’s the thing: we work to keep it manageable.  Suddenly it was totally unmanageable pretty much all of the time.  The problem was, I just didn’t have the time to stop and do anything about it.  I had all these things I needed to do (or, at least, that’s what I kept telling myself), so I kept doing them.

I guess it sounds like I’m whining.  I guess that’s because I am.

See…that’s why I avoided talking about this.  It’s hard to do without sounding like that.  Ugh.  I feel bad for dropping so many balls.  I did not give any teacher gifts.  I forgot to RSVP for virtually everything.  Most nights, I looked up and went, Oh, crud.  It’s like 8pm, and I haven’t even started dinner.  Then, we ate dinner (such as it was) at some time between 8:30 and 10:00.  I know.  I totally rock.  More often than not, we ate leftovers, or I told people dinner was “catch-as-catch-can.”  Again.

This isn’t coming off the way I want it to.  It’s frustrating.  I don’t need people who read this to come back saying to me, “I’m sorry you have pain,” or “I’m sorry you have to deal with that.”  I mean, I totally appreciate that sentiment, and I believe that you mean it.  What I mean is, I am not fishing for that.  I just…What do I want?  I guess I want people to understand what’s been going on with me, and why I have been kind of “out of it” recently ~ and that, hopefully, things are going to get better.

I decided to sit down and write this because I figured people have noticed.  I’m a mess.  I am running behind on everything.  Now, you know why.  So, if you’ve been fed up with me recently, I apologize.  I probably should have explained sooner what was happening.  In some ways, it’s just all part of the same old thing, and I guess maybe I get tired of explaining ~ I guess I think people get tired of hearing it, too.  But maybe you can understand that, if I say, “It’s been a rough day (or week, or time, or whatever I might say that sounds similar to that)” or even if I say nothing, but I just don’t do a great job of keeping up with things.  Maybe you can think back on this post, and think to yourself, “Ah, yeah.  I get it.”  Maybe we can all just sort of do that for each other.  Just try to assume that we’re all trying our best all the time, and that, if we aren’t getting things done, or aren’t getting them quite right, there must be a good reason.

Moving forward, I’m hoping to end this year, and start the next, on the upswing.  I don’t want to be just sitting around doing nothing, so I think maybe I will sit here and work on some scarves, and practice my banjo, instead.  Maybe I’ll read a book.  I’ve already managed to do some online shopping.  It was late, but at least I got it done.  The nerve block went well.  I mean, we won’t know for a while whether or not it actually did the trick, but at least I didn’t pass out or anything.  Things are already looking up.  Now, if only I could figure out how to cook and clean while lounging on the sofa.

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How Bad Is it? ~ by Sam

Last night, my foot went out.  I don’t mean it had a pleasant night out on the town.  It’s done that, with me in tow (if you’ll pardon the pun), but that was not the case last night.  Last night, my foot just sort of ceased to work.  I call this “going out,” as in, “My foot’s gone out again.”  You know, like when your transmission goes out.  This happens in a number of ways.  What I mean by this is that it simply freezes up and refuses to move.  Sometimes, it sort of seizes, and assumes an usually grotesque position before freezing (often folding vertically in a way that feet don’t actually fold, so that my big toe rotates in to a position that is under or over the rest of my foot).  Other times, it just sort of flattens and becomes stiff, like a boot, all the way through the foot and ankle.  In any case, it is useless, and it feels freshly broken.  No, scratch that.  I would say it feels more painful than a break.  It feels… hmmm… It feels like it was broken, and then…I don’t know…something else happened to it.  Like, maybe it caught on fire, and got slammed in a door.  Yeah.  I’m gonna go with that.

But that’s a mouthful; so I just say, “My foot’s gone out.”

It goes out a lot lately.  I think I should buy it some fabulous jewelry.

Anyway,  this is a CRPS thing, and, yeah, it has been happening, so I guess I had better call my excellent Pain Management doctor, because his job is, after all, to help me manage my pain.

But, see…

It’s hard, because I can’t think of myself like that.  As a person who has a Pain Management doctor, and a chronic pain condition that needs to be managed. Coincidentally, just yesterday, Justice was asking me if I considered myself to be disabled, due to fibromyalgia, CRPS (and a host of other health concerns that have cropped up recently, I suspect), and I told her I don’t.  Of course I don’t.  I am able to get around and do what I need to do.  …pretty much…  I might not feel great, but I get by. …most days…  I mean, I had to quit my job, but I am still able to do a lot of things.  …usually…  I am even able to do things I enjoy.  …sometimes…

And then, here we are, on a day like today, when CRPS has brought me, literally, to my knees.  I am not looking for sympathy.  I am not making excuses.  The thing about CRPS, for me ~ where I am with it, anyway ~ is that I have been advised to just keep using my foot as much as possible, no matter how much it hurts.  I just have to keep making myself use it, even when it feels like it’s broken, and on fire, and someone slammed a door on it, because, if I don’t ~ if I let that stop me, and it stops me for a day, and that day turns to 10 days, then a month, then 4 months, then a year…well, then, eventually, I might lose the use of my foot.  And that  would be unacceptable to me.  I think, perhaps, I am writing today to figure out where it is I stand with all of this.  (Again, if you’ll pardon the pun.  There are just far too many foot puns.)

So, last night, when my foot went out, I took my Nortriptyline, like I always do.  I struggled to get my jeans off and pajamas on over my stumpy boot-foot.  I used the ketamine gel that I only use when I really need it, because, frankly, it’s just too expensive to use more often.  I ran through my exercises.  I cussed while doing all of the above, because, frankly, it hurt like a motherfucker (you can consult the  McGill Pain Index to see exactly how much a motherfucker hurts, if you are curious ~ it’s a lot).

(Sorry.  That was rude.  I probably apologized last night for cussing, too, even though Shane was the only one in the room, and he was asleep.)

This morning, I got up and made coffee, and didn’t help much with getting kids ready for school, and drove Kaia to school.  Then I went to the store, because I had to.  I mean, I probably didn’t have to, but there were a few things we needed, so I did it.  At one point, as I was pushing my cart, a man said to me, “Oh, come on now ~ it can’t be that bad,” and I thought, “Fuck you,” but I didn’t say it, and I think he’s kind of lucky I didn’t say it, because, really, just a little bit, fuck him.  I mean, I get it.  He had no idea what I was going through today.  He has no idea what my life is like.  In fact, I have no idea what his life is like.  He might have a terrible time, for all I know.  But, you know what, it is that bad.  Sometimes, it really is that bad, and I guess, this morning, maybe that was evident, in my demeanor.  I know I was limping.  I know I was using my cart for support.  I can assume I was obviously not having a great time, or he would not have commented.  And yes, as a matter of fact, it really was that bad.  I guess, I’m lucky he didn’t ask me to smile.  Or maybe he is.

On the way out of the store, after I had paid, I noticed a woman walking directly behind me with her shopping cart.  “I’m sorry,” I said, as we made our way through the automatic door, “I’m very slow.”

“Oh, that’s okay,” she replied.  “So am I.” After a moment she added.  “At least we have our carts to lean on. I don’t know how I’d make it without that.”

“Yes,” I agreed, “that does help, doesn’t it?”

We walked very slowly to our cars together.

So, I’ve come to the end of this entry, and I haven’t figured out anything ~ except, perhaps, that, sometimes, it’s enough to know that someone else understands.