Cold Hands, Warm…muscles? by Sam

One day last week, while I was making dinner, my hands suddenly turned bright red and felt as if I had poured bleach all over them. Thinking I must have come in contact with some allergen, I immediately stopped what I was doing, and thoroughly washed my hands. The redness and irritation greatly subsided in 15-20 minutes, but my hands remained irritated, and the skin was peeling, as if I’d had a severe sunburn. Over the next few days, the symptoms recurred, so I contacted my PCP via email, including a photograph of the initial reaction. I supposed there were three possibilities:
a) the CRPS was spreading to other parts of my body (rare, but not unheard of)
b) these symptoms, ‘though not like any I’d experienced with it in the past, might be related to Raynaud’s (to be fair, the symptoms were not exactly like CRPS, either, but it does involve both redness and burning pain)
c) this was something entirely new and unrelated to any of my previously existing conditions
     We played phone tag for a few days until I finally got a call from a nurse on Monday of this week. My doctor felt it was most likely that the symptoms were, in fact, a more extreme manifestation of Raynaud’s than I’d experienced in the past, and that, as my symptoms seemed to be getting more severe, it might be time to consider medication.  Hence, I was referred to a rheumatologist. That appointment occurred on Thursday of this week.
     As luck would have it, the medications used to control symptoms of Raynaud’s Disease are blood pressure meds; and, because my blood pressure is low, my doctor doesn’t want me to take them.  You see, unfortunately, they could cause my blood pressure to drop even lower, and this could result in dizziness and falling. Falling has already been rather a chronic problem for me, and it has been deemed an unnecessary risk, as has dangerously low blood pressure.
     So, I have been given recommendations to step up my efforts to stay warm. These include things that might seem obvious, like using hot water bottles and heated gloves/socks/blankets, warming creams, taking warm showers when I come in from being outside, making sure to keep my hands and feet covered and protected, even when I don’t feel cold, and keeping my core warm. They also include things that might seem a little less obvious, like increasing my salt intake, in hopes of raising my blood pressure, and building muscle mass. The challenge, here, my rheumatologist pointed out, will be striking a balance in which I work out to build muscle mass, but am careful not to accidentally lose weight. This will involve adding protein-dense calories to my diet, which means adding food to my diet.  (I know.  This doesn’t seem like brain surgery.  Stick with me.  It’s trickier than it seems.)  I started working on this as soon as I got home on Thursday. I immediately baked a loaf of peanut butter bread, replacing part of the flour with almond flour.  Then I made myself a peanut butter and jelly sandwich with it.  I figured, that way, at least I am getting lots of protein (and lots of calories ~ yay!)  Because that working out and not accidentally losing weight thing?  Believe it or not, that really is a challenge.
     I know. This all sounds sort of stupid. But…food is hard.  I mean, I have had food issues for a long time.  First and foremost, there are the lingering eating-disorder-related issues, which will always linger; but, on a more basic level, there are all of the food allergies and sensitivities.  I am allergic to milk protein (and elderberries, and echinacea, which don’t come up much, so that’s okay, really.  Oh, and shellfish ~ which never comes up, because I’m vegetarian, but does somewhat complicate eating at restaurants, or buying some prepared foods).  I also have IBS, and, while it seems to be fairly mild most of the time, it can rear its ugly head at any moment, and, at those times, it is triggered by: eggs, white/refined carbs (so, any bread, pasta, or baked goods made with that, white bread, white rice ~ basically, I do better with whole grains and more fiber in my diet), and fried foods.  Then, there are times when I think it is triggered by food.  Oh, also, stress.  It is also triggered by stress.  Then, add to that the fact that I am on a medication that makes it hard for me to keep on weight, even when I am not working out.  So, now, I am trying to eat the right things that won’t trigger my IBS, so I can be sure not to lose weight while doing PT, so my CRPS won’t flare up, so I can then work out enough to build muscle mass to try to keep myself warm ~ but not so much that I accidentally work off any of the extra peanut butter I ate.
     Because then, maybe I will be buff enough to haul in some firewood and build a big fire, and then we will all be warm.  By “we,” of course, I mean me, and all of my fingers.  And my toes. My toes are also cold, but I don’t see them often, because they are very far away, and usually inside several pairs of socks. I miss my toes.
     Ah.  But we have a gas fireplace.  So, forget about that firewood.  I’ll use my muscles to lift more peanut butter sandwiches, instead.
     On Friday, I didn’t manage to do much working out, but I ate pretty well.  I mentioned this to Hallie, adding my concern that, if I keep doing this, I won’t build any muscle, and all that extra protein will just be converted to fat.  “Well…fat will keep you warm,” Hallie responded, quite correctly.  And, so, I guess we’re good.  Because, the truth is, fat will keep me warm, and I really, really need to stay warm.  Nevertheless, I have always dreamed of being sort of buff.  Warm, and buff.  It sounds kind of dreamy.

     I guess I’ll keep working on the muscle-building thing.  To be perfectly honest, I was already working on that.  Which sort of makes me wonder if I should feel a little bit insulted at the implication that I need to build muscle mass.  Except…well, I really do need to build muscle mass, and I know it.

I guess I needed a New Years Resolution or two, anyway.  Y’all watch: by 2018, I’m gonna be stronger than I’ve ever been.  And warmer, too.

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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.

To Start Anew ~ by Sam

2017 finds us all poised at the breaking dawn of a fresh, new year.  A year full of hope, and promise and possibilities.  The problems, the struggles, the tears, the regrets, the trials, the toils of 2016 and before lay behind us, and what lies ahead is infinite and unknown.  People encourage us to move only forward, to cast off the negative, never looking back; but, like Lot’s wife, we find ourselves compelled to cast that glance aft, and then…

Then what?

Isn’t it our history that informs us?  Isn’t it our past that makes us what we are today?

And so, I offer this advice for the New Year: Don’t attempt to make a brand new start, as people suggest.  That is far too tall an order for anyone, and destined for failure.  Sure, go ahead, move forward.  But don’t just put one foot in front of the other and trudge blindly on.  Move forward informed by the past, strengthened by your experience, hardened in your resolve ~ battle-scarred and imperfectly-perfect, as are we all ~ ready to conquer whatever life happens to throw your way.

In that spirit, I give you my Resolutions for the New Year, in no particular order:

In 2017, I resolve to:

Be Kind.
Listen.
Visit Places.
Make Things.
Plant Things.
Play Music.
Take Care of Myself.
Cook.
Write.
Read.
Dance.
Laugh.
Sing.

I might clean some stuff, too.
Maybe.

I think I can handle that.

Wishing you and yours Peace, Love, Health & Happiness in the New Year and beyond.  With all of those things, how can we possibly go wrong?

New Year’s Eve Eve -by Sam

As I find myself looking back on the past year, I can’t help but think, “It’s been a rough one;” and the thing is, I’ve been here before. It’s starting to feel like I say this to myself at the end of a lot of years. You might be thinking, Oh, that must be a chronic illness thing. Some of you might be thinking (and some might be irritated about it), Is this about all of the famous people who have died this year? Is it about politics?

You know what, it’s not.

Well, or, maybe…maybe those things are all a little bit harder to take because everything is a little harder to take because there’s just always this underlying…well. Things have been difficult for our little family, dear friends and readers. The thing is, see, I don’t…well, this goes back to that complicated part of my last post, in which I talked about how I don’t talk about all of my business, because it’s not solely my business. So, I can’t just put it all out here for the world to see. In fact, I can’t put it all out anywhere, so, I am just kind of alone with it, and that’s very, very difficult for me. But I guess it’s normal, too.

What I mean is, you know, life’s not always a bowl of cherries. Or, well, maybe it is. But, maybe, sometimes, it’s not just a bowl. Maybe, sometimes, it’s a huge, steamy, rotten, mess of moldy cherries somebody bought a really long time ago, and no one ate, and they’ve been fucking sitting in your favourite chair for so long that they’ve started to decompose. Then, one day, you come home, sick and exhausted, and overwhelmed, unable to work, and in debt, and thinking, good god, if one more thing happens, it will put me over the edge!…and you flop down in that chair just as the phone rings to tell you that someone, somewhere needs you to come, immediately, to do something, or else the world will collapse, because, really, you’re supposed to be a superhero. And your coffee spills all over your lap, causing a chemical reaction with the rotten, moldy cherries, making their effect seemingly permanent.

So, now, everywhere you go, for the next two or three years (at least ~ jury’s out. This could be permanent) the rotten cherry funk is in your clothes, your skin, the very fiber of your being, maybe even your soul. It’s still in the chair, too, so other people in the household are going to be exposed, and there’s nothing you can do. It’s terrible stuff. It makes everyone miserable, and no one knows why, and no one knows how to talk about it, because no one even really knows what it is.  It is just so incredibly awful, so unexpected, so utterly preposterous.

And people can tell something is wrong, so they ask.

They keep asking.
“How are you?”
“Are you okay?”
“How’s the family?”

And, you know, society has these conventions, so you have to say,
“Oh, yeah, I’m fine.”
“We’re fine. “
“We’re great.”
“Everything’s good.”

But you know you’re not fooling anyone. You’re a lousy liar. You always have been, and you always will be.

To further complicate things, in the meantime, all of the normal, everyday things that happen in life keep happening around you and your moldy-ass cherries; and, you know, they’re totally normal things. Things that involve other people, but actually aren’t a huge problem. They’re little things, normal things, easy things that might be sort of challenging or, you know, require an adjustment in the way you think or do things; but they aren’t a big deal. They aren’t bad. They aren’t cause for strife or anguish or concern. It’s just that, sometimes, these people, who don’t know about your moldy cherry situation, they just don’t get that, and they think it’s all about them. Maybe we all think it’s all about us, all of the time. I guess that’s just the way humans are made.

And then, if you’re super lucky, you get not-a-diagnosis (which has nothing to do with the cherry situation, by the way, but conveniently occurs right on top of it), and they say to you, “Just keep on this band-aid*, and don’t take it off! I mean…we really don’t think you’ll bleed* profusely if you do, but DON’T TAKE IT OFF….just in case.” So you tell them, “Hey, you know, that’s…um…great and all, but…uh…I’d really like to know why I am having these symptoms.” And they tell you that what you can do, if you really want a diagnosis, is take off the band-aid, hook yourself up to a monitor for a few days that will cost roughly 8-gazillion bucks* and hope you bleed a lot during that time, so they can record it and figure out what’s happening. “Uh…” you say, “That sounds sort of…um…expensive…and dangerous…” They confirm that this is true, and so, you decide to keep your band-aid and lack of diagnosis, so, when people ask you what particular health problem you are having, you can now, officially, say, “Fuck if I know, man.”

So.

When I say it has been a hard year, I mean it has been a hard year. I mean it on a very personal level. I can’t say I don’t want to talk about it. I want so very much to talk about it. I mean, come on, guys, I’m a talker. It’s just, well, I can’t, because you’re not my therapist. I say I am alone with my problems, but the truth is I can go talk to a therapist, and so, at least there is a place where I can unload all of this bullshit, so I don’t have to unload it all on my family and friends, and that is good, I guess.   I mean, it’s expensive, and I will always have trouble spending money, because, no matter how much money we make, and no matter how many times I am told not to feel guilty about my current inability to work outside the home, I will always be made the way I am. It’s hard for me to spend money ~ especially money I did not earn. Also, I would rather talk to friends. Or even strangers that, you know, I’m not paying to listen to me. It just feels more natural, somehow. Therapy has never felt natural to me. I guess that’s just me. Also, it’s expensive. Did I mention that it is expensive? I’m kind of a cheapskate, in case you have forgotten.

Anyway…

I sat down and wrote this up today for two reasons:

One) I plan this year to get back to writing, and this seemed like a logical place to start. I can start journaling. Honestly, as I sit here writing, I don’t even know if I plan to share this with the world. I am writing this in a Word doc on my MacBook Air, and it may never see the light of day. If you are reading it, we will know what decision I made. Hopefully, writing this way will lead to other writing. Who knows? Maybe I will take a class. God knows I could use a little more class. (Ha. See? I’m funny)

Two) I need to get back to being me this year. I am not able to carry the weight of knowing I have this secret funk lurking in my life; and, even ‘though I cannot share details about it, I think just sharing the fact that there was a Thing, and it was Bad, might help. Just so people know that I actually have been dealing with something. You know, because I know people must have been wondering. I feel like I haven’t been true to myself. Like I have been presenting a façade to the world, and I don’t do that well. So, I guess this is me, very vaguely, coming clean. ish. sorta.

I know that, if I share this, people will, most likely, start all kinds of wild speculations about what The Thing was. Can I ask you a huge favour? Don’t. Please. Just…stop it. If it was your business, it would have happened to you. I know that’s a tall order. But, you know, it’s also a respect for privacy thing. I’m asking. I would do the same for you.

So, I guess, in a way, this is me, getting a jump on my New Year’s Resolutions.

I’m off to a decent start, really, if you count yesterday. I talked to my mom and dad, and my cousin, Alice, very briefly, on the phone. Left a message for one of my very best friends (will call another today). Texted back and forth with my big brother (because we are just so cool and modern like that), and set up a time to call and talk (we penciled each other in ~ I’m having my people call his people ~ we are ever so Important). Talked on the phone with my big sister, while going for a walk around the neighbourhood, thereby killing two birds with one stone (my least favourite idiom ~ so gruesome!). I also cleaned the bathrooms, dust-mopped all the hard floors, did some laundry, tidied up the house, worked in the yard a little, emptied the rain barrel (just in time for today’s rain), made a nice dinner, did my physical therapy, practiced banjo, and baked the last of the froggers. Then, I took a hot bath with Epsom salts, because some of that was a lot of work, and sat down to watch an episode of Major Crimes with Shane. I even worked a little bit on a ruffle scarf while watching.

This morning, I awoke to find the rain has come to wash away the dregs of 2016, and not a second too soon. So, today, I’ll balance the checkbook, and make sure all of the bills are paid. I might even make a pot of soup. Seems appropriate for a rainy Southern California day.

Wishing you all peace at the end of this year, whether or not it has been a rough one for you; and wishing us all a bright and beautiful New Year. I think we all deserve it.

 

*For clarification purposes: the terms “bleeding,” “band-aid,” and “8-gazillion dollars” are as analogous in this piece as cherries. I am not bleeding. Well, not at the moment. Give me time. I am very accident-prone. I do have a chronic health problem that requires constant medication. I would rather not be specific.  It’s a thing I do.

I Ate a Sandwich – by Sam

The other day, I was out shopping, running some errands, picking up dry-cleaning, and I realized, at about 11-ish, that I hadn’t eaten more than the sample of cranberry bread and coffee at the grocery store.  So, I decided to stop and grab a sandwich at a nearby sandwich shop.  It’s funny, I think, that it was a sandwich.  By “funny” I mean, “coincidental,” or, perhaps, “unintentionally ironic,” because, you see, I am periodically told that I need to “eat a sandwich.”  Really.  This comment usually comes from rude strangers who have decided that, for some reason, it’s okay to make comments about my weight or my body because I am thin.  It’s okay, they think, to tell me that I “look anorexic,” that I need to “get a little meat on my bones,” that they “prefer women with curves” or even to ask me if I think I look attractive like that, or what example I think I am setting for my children.  Yes, these are all comments that have actually been made directly to me by strangers.  Once, a few years ago, I had a guy at a bar tell me that I was so skinny I looked like a Cancer patient, after I turned down an advance from him.  At that point, I was probably actually sick, but really?  Because, a second ago, you were interested.

What’s even weirder to me is when friends say things like this to me.  It happens.  I understand when they express concern.  They tell me I am getting too thin. They ask if I am okay.  I get that.  I mean, that’s cause for concern.  Some of them know my history.  I’m an eating disorder survivor.  So, yeah, okay, that’s reasonable.   Even if I they didn’t know that, seeing someone lose weight…well, I guess it can look unhealthy at a certain point.  They know my health, in general, is an issue.  I can see why it would worry them.  It’s still hard, when it happens, but it’s reasonable.  But that “sandwich” line?  That’s gotta go.

The problem is, right now ~ and, as it turns out, maybe for a long time ~ I have to be on a particular medication.  I have to be on it. I don’t really want to go in to detail about what’s going on, but it’s nothing terribly earth-shattering.  The end result is that I have to take medication daily, which solves the problem, and the only caveat is it affects my weight.  It has caused me to lose weight.  It increases my appetite, which is awesome, but it does make it difficult for me to gain weight, which is not great.  However, under the circumstances, I can’t worry about that.  So, I guess I should take this opportunity to assure those close to me that I am not relapsing into my eating disorder.  I’m actually doing quite well, and eating better than I have in years.  I feel pretty great.  But I am very thin.  I’m sorry.  I know that might look frightening to some of you, particularly those who have known me for a long time.  I know it might be hard to understand.  I am going to ask you to try.  To trust me.  I’m doing okay.

I will ask my friends to please avoid the “eat a sandwich” line.  Maybe you think, by saying something like that, you are keeping it light, but still addressing the issue?  It’s really just kind of mean.  That just doesn’t need to be said.  Frankly, sandwiches aren’t my favourite, food is a bit of an issue for me, my weight is always going to be a sensitive subject, and I am very self-conscious about it.  Besides which, it’s just not the kind of thing on which people need to comment.  Aren’t people taught not to make personal comments anymore?

As for the strangers who make those kinds of comments to anyone: stop.  Just stop.  Whether you are saying these things in person or online: stop it.  Why do you think you get to do this?  Who cares what you like?  Keep it to yourself.  You’ll tell me you have a right to your opinion, and sure you do, but here’s the thing: that person you’re talking about might be very thin for any number of reasons.  Maybe they actually are anorexic.  Did you ever stop to consider that?  Why is that term thrown around like an insult?  You know, its an actual illness.  It’s not a choice people make because they are trying to be cool, or they think it’s beautiful.  Maybe they’re just naturally thin, in which case, who do you think you are telling them how they should look, and that they are setting a bad example, or that they are unattractive, just because they look the way they do?  Maybe they have some kind of health problem that causes them to be very thin.  What if that person you just said looks like a Cancer patient actually IS a Cancer patient?  Aren’t you a freakin’ rockstar, now?  I mean, whatever happened to “if you can’t say something nice, don’t say anything at all?”

This brings me back to the sandwich shop.  I was really very hungry, so I ordered my sandwich, with all the toppings I wanted, and the guy behind the counter asked me what size I wanted.  I had no idea.  I just thought they had the one size.  He explained that they had three sizes: 7″, 10.5″ and 14″.  I chose the 10.5″ sandwich.  He paused.  I waited for him to ring up my order.

“Um,” he said, finally, “Are you sure?  That’s about as big as this bag.”

He was looking down at me from behind the counter, showing me the bag, so I could fully  understand the gravity of my decision.  I was sure.  I wanted a really big sandwich.  For godssake, I can measure.  I mean, I’ve been using standard 12″ rulers since grammar school.  I buy 12″ subs all the time.  I can guess roughly how large a 10.5″ sandwich is! Now, I’ll be honest, I had a lot of errands to run, and I didn’t really plan to eat the whole thing all in one sitting, but, while he stood there judging me and my sandwich, I didn’t see any reason to explain that to him, so I just said, “Yes.  Ten and a half inches.  Please.”

“Okay,” he said, still sounding skeptical.  It kind of pissed me off.

You guys, I can’t win for losing.  I’ve got people telling me to “eat a sandwich,” and people telling me I couldn’t possibly eat THAT sandwich.  If a larger person comes in and orders the small sandwich, does he say, “Oh, I think you’re gonna need a bigger sandwich, buddy,” or does he judge them in another way, and offer them the lettuce wrap?

I guess I’ll never know.  I sat outside and unwrapped my sandwich.  A guy who looked exactly like George Lucas walked by.  I like to think it was George Lucas.  I mean, not many guys look exactly like George Lucas.  I ate 5.25″ of sandwich, then wrapped up the rest to eat during my errands.  It was a very good sandwich.  A very large, very good sandwich, even though I was a little pissed off about the guy’s attitude.  I ate it.  And I am still thin.  I still have only very minimal curves.  And I still don’t give a rat’s ass what some stranger prefers.

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.