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.

Needles to say… by Sam

**Yes, I know that says “needles,” instead of “needless.”  I did that on purpose.  If needles are a problem for you, RUN NOW.  I still love you.  Oh, and they’re a problem for me, too; but, sometimes, you have no choice.

Well, I certainly do know how to keep ’em hopping! This morning I went in for what was supposed to be a routine nerve block. Routine for me, that is, because, while most people are told to fast and not drink water before the procedure, I am told to drink water and a cup of coffee before mine, since I have a tendency to faint. Oh, and, yeah, nerve blocks are pretty routine for me these days. Now, usually, this procedure takes about 15 minutes.  Shane drives me to Kaiser, I register in the Pain Management Department, and, within in a few minutes, they call me back.  We have learned to make sure I am well-hydrated (and have had a cup of strong coffee) when I arrive; that I am given oxygen during the procedure, and that my vitals are monitored throughout.  You know, and that there are smelling salts handy.  No, it shouldn’t be this hard.

When I arrived, my blood pressure was already low, so the doctor decided to start an I.V.  I warned him that a) my veins are tiny, and b) I am a great big baby.  Every time I need to have a blood test, I lead with, “I tend to faint.”  They have me lie down, and, as a result, I hardly ever faint.  This morning, I was sitting in a chair when the I.V. was inserted.  It honestly did not occur to me to ask if I could lie down, even though I have fainted with I.V.s before.  The doctor put in the I.V., and he did a great job.  Got it right in on the first try, and I remember thinking, “Wow, that wasn’t bad at all.  I barely even felt it.”

And then I was coming to.  They were hooking me up to all kinds of monitors and giving me oxygen.  Poor Dr. Pastushenko.  I am always doing stuff like this.  Well, since I was already there and hooked up to an I.V. and everything, they decided to give me fluids and monitor me until my vitals were back to normal.  This took some time.  Poor Shane was sitting in the waiting room with absolutely no idea what was going on, so, once I was settled, I asked the nurse if someone could let him know that I was okay, but it was probably going to take a little longer than planned.

After about 45 minutes, I think ~ it’s hard to tell, as I was a bit hazy at the time ~ my vital signs looked good, so I was moved in to the room and prepped for a lumbar sympathetic nerve block.  These nerve blocks aren’t especially entertaining.  First, you’re lying face down on a table with a pillow under you, so your bum’s in the air.  In my case, you’re doing this while attached to all kinds of tubes and wires, and the pulse oximeter keeps slipping off your tiny fingers and setting off alarms until the doctor, in a stroke of genius, clamps it on your thumb.  Problem solved!  Oh, but before the doctor comes in, they open the back of your gown and pull your pants half down.  So, face down on a table, hooked up to a bunch of crap, setting off alarms, with your half-naked bum in the air.  So, maybe I’m wrong.  Maybe it is entertaining.  It’s like your typical wild party.  I mean, if that’s the way you party, I guess.

Luckily, the I.V. fluids and oxygen helped a lot.  Also, I found that picking a spot in the distance to focus on while taking deep relaxed breaths helped.  I didn’t even have to close my eyes.  Why I usually have to close my eyes is beyond me.  It’s not like I can see my lower back while lying face down on a narrow little table.  The actual nerve block was par for the course.  First, you are numbed locally.  They do this, I think, to lull you in to a false sense of security, because, the truth is, when they administer the actual nerve block itself, you can still feel it.  Well, I can still feel it.  I have no idea how it is for anyone else.  But, you know, then it is over, and, though it is not the way I would want to, say, celebrate my birthday, I know that, in the long run, it will lessen the pain in my foot and leg, so I can continue to use them more normally, and that’s important to me.  It’s been flaring up a lot lately, and the pain now travels farther up my leg than it had, so something had to be done to try to halt it, at least for a little while.

I am monitored until the I.V. fluids are gone (not all of the I.V. fluids in the hospital, just the ones that were already hooked to my arm), the doctor evaluates me, and I am cleared for take-off.  Very slow, walking, on the ground take-off.  No lifting, pulling, driving…or, you know, actually flapping my arms and flying, I suppose.  Already, my leg feels better.  When I walk on it, I am aware of the difference.  Pain doesn’t shoot up through my knee with each step, and that is a vast improvement.  My feet are the same temperature ~ which is still probably colder than normal feet, but better than when the CRPS-affected foot is markedly different in temperature than the other one.

So, now, I rest.  Since the procedure took a couple of hours longer than anticipated, Shane called in and took the rest of the day off.  I hate to make him miss work, but I am glad to have him here, so I can just rest all day.

The verdict, in the end, was that the I.V. helped enough that we are going to have to make it part of my protocol.  From now on, however, we are going to make sure I am lying down with my feet up when it is started.  Everyone is always surprised that I have so much trouble with needles, when I have so many tattoos.  The thing is, no one ever tattooed into my veins.  I can take other kinds of needles.  I pierced my ears with pins ~ CHILDREN: DO NOT TRY THIS AT HOME.  It was a really stupid idea, and I am lucky I still have ears.  I actually have a pretty high pain threshold. I think I must just have a very low “vein threshold.”  I don’t really even like talking about my veins, or seeing them through my skin.  *shudder*

So, I have to figure out how to get over the whole fainting with I.V.s thing.  But not right now.  Right now, I’ll just read a book.  A book that’s not about veins.

Chronic Illness and Hypochondria ~ by Sam

I decided to tackle this issue today, because it hits very close to home (right smack in the middle of it, actually), and causes a great deal of stress.  Since we talk about strategies for lowering stress in our daily lives, let’s talk about a major contributing factor: chronic illness.  I am chronically ill.  I have fibromyalgia, IBS, Raynaud’s disease, asthma and an assortment of allergies (food and environmental).  My bones are weak, and I am hypermobile (which isn’t really a problem in and of itself, but does leave me prone to injury).  I seem to excel at injuring myself.  (Interesting note: people who have fibromyalgia tend to be more prone to injury, so I am not alone.)  In my life, I have had an assortment of broken bones, sprains, a partial ACL tear, a Type III tear of the Medial Meniscus, and, currently, I seem to have ruptured a tendon in the top of my foot.  I don’t “think” I am sick.  I don’t take my illnesses and injuries too seriously.  I really am sick and prone to injury.  I don’t get bumps and bruises; I get torn ligaments.  It’s different.

Oh, and I have panic attacks.  Hell, wouldn’t you?

But, I am not writing this to say, “Oh, woe is me!” and I am not writing it for myself.  I am writing for the thousands of other people who suffer through chronic illness.  I am writing this because there seems to be a great deal of misconception when it comes to chronic illness.  Some of these illnesses are “invisible,” meaning, when you see me on a daily basis, I don’t look “sick.”  So, it’s hard for people to remember (or believe) that I am.

From the outside, I look lazy, or weak.  So, I am writing to caution you, when dealing with anyone in your life, to remember that you only get to see the outside.  The world only gets to witness what we choose to put on display.   Many of us our very private people, and prefer to keep details of our illness to ourselves (you can Google them all, or ask me questions privately, if you like), and most of us hate being perceived as whiners and complainers.  So, we don’t talk about it.

Except when we do.  Because, sometimes, we DO need to talk about it.  I seek out others who have similar issues, because I know I can vent to them, and they will understand (online forums are great for this purpose).  I rely on the support of my friends and family, who I know love me, warts and all.

When you are tempted to think someone is being weak or lazy, or complains too much, please pause and think.  It’s possible that they have already fought and won numerous battles before they even left the house that morning ~ things you will never know about, like, maybe, that man woke up unrefreshed, feeling like someone spent the whole night beating him with a bag of hammers, but he got out of bed, anyway.  Maybe, that woman cried through her morning shower, because all of her skin feels severely sunburned all the time, and washrags feel like sandpaper; but she showered, anyway, because you can’t just go around dirty all the time.  Maybe, the child had to use a nebulizer this morning, and is jittery and grumpy as a result, because, otherwise, he couldn’t breathe.  Maybe, that incredibly slow walker at the the grocery store moves that way because it feels like she’s stepping on broken glass.  Maybe, your friend is late because he had an attack of explosive diarrhea, and he’s still not 100% sure it’s over, but he showed up anyway, because it’s not like he isn’t used to this.  Maybe your coworker is distracted because she is just in so much pain that she can barely think.  The fact is, we just don’t know what people don’t tell us.

Please, if you know someone who is suffering from chronic illness ~ or even someone who is just “always sick” ~ try to be supportive and understanding.  I cannot count the number of times I was called a “hypochondriac.”  There are two problems with this: a) I am not a hypochondriac, and that person with whom you are irritated might not be, either; and b) hypochondria is a real, serious, and treatable condition.  If you truly believe someone you care about suffers from hypochondria, for God’s sake, help him.  It’s important, here, to caution anyone dealing with a person (yourself, or someone you love) who seems to be “always sick” not to chalk it up to hypochondria and move on.  The fact is, even if no doctor can find a diagnosis, that person may still be suffering from some kind of chronic illness.  Don’t give up.  There are answers.

Lastly, I will offer a few words of caution about those “answers.”  They are just that: answers.  So, now, we know what to call this.  We know how to begin to treat it, and possibly improve the situation.  However, chronic illness is called “chronic” for a reason.  For some people, identifying the culprit means starting on the road toward recovery and improved quality of life.  For others, it means learning to manage symptoms, learning how to live with being chronically ill.  So, don’t hold your breath waiting for a “cure,” but don’t give up on finding one, either.

How do I manage the stress of being chronically ill?  I’ve found this works:

Relax.  Breathe.  Brace yourself.  Soldier on!

Thanks for taking the time to read.