Human Pincushion February 4, 2013

The bruise encircles a pinprick on my thigh, the site of yesterday’s injection.  I must have screwed up, placed the auto-inject pen at a slight angle instead of going straight in.  Plus, yesterday was my left thigh’s turn to get lucky, and it’s a crapshoot how things turn out then.

To give myself  the injection, I need to ‘pull up’ (ugh) some adipose tissue (say it, FAT) to receive the needle.  The tops of my thighs don’t have quite enough to perform this task with ease.  The upside of not being in the best shape of my life is there’s more of the aforesaid adipose tissue on my abdomen, and at least four out of six injections end up there.

My husband discovered my injection chart the other day.  I had taken a picture of my abdomen with my Photo Booth, and every six weeks I mark a circle of dots around the belly so I can keep track of where I prick myself and when.  He said he was a bit shocked because you just don’t expect someone to have a picture of their belly laying around.  True.  However, this whole RA (rheumatoid arthritis) business has changed things up in my life, to be sure.

Like every two weeks I stick myself.  They say not to inject in the same place twice, to avoid veins, to avoid scars, to avoid moles.  I try.  I’ve been doing this for about 1 1/2 years now, and I suspect I’m now making my own scar tissue.  As there’s no cure for RA, I imagine I’ll be continuing my injections for the duration.  Or until they stop working, or start hurting me.

I’m grateful for the medicines that make it possible for me to live a “normal” life.  I can walk with ease, usually.  My elbows are only a little cocked.  Although some aches persist, I can’t say I’m in pain.   I’m especially happy that I don’t have to inject every freaking day, as I’d have to if I was diabetic.  Life is good.

An occasional bruise is a small price to pay.

I Love My Car June 26, 2012

I love my car.  I say it unashamedly, giddily, goofily, as any lover would about the object of her desire.  I admit at first it was just physical attraction.  The chemistry was immediate.  We looked good together.  People remarked on this, and still do.  “Wow. Like your car.”  “That is a nice-looking car.”  “Wish I had a car like that.”  “Thank you”, I reply, a little smugly.  Sometimes I can’t help but break into a big ol’ grin and holler, “I KNOW, right?”  I just love my car.

It’s not like I had ever pictured myself with a car like this.  Previously, cars had simply been a way to get around, cart kids around, carry groceries, etc.  I prided myself on not caring about cars or what they looked like.  My entire driving life had been lived behind the wheels of used, compact cars.  They were good on gas, didn’t cost a lot, and we drove them into the ground.

The one exception was a 3/4 size van which we actually bought new, although I have no idea where we got the money.  It was awesomely roomy and comfy and I felt like I was driving an indestructible tank right up to the moment I got hit by an SUV doing 50 mph which flipped my van over onto the roof and stoved in one side.  I vividly remember hanging upside down until I woke up enough to undo my seat belt and crawl out the window next to me.  I had visions of the whole thing going up in flames.  The van was history, but no one was injured.  Just a bit traumatized.

My current car, my ‘Stang, was purchased slightly used at the end of a summer which began with me pulling into the credit union next to a red Sebring convertible.  As I disembarked from my Focus I thought, “Geez.  That looks like it’d be fun to drive.  LIke every ride would be a little vacation.”  A woman got into the car who was a few years older than me, and I was jealous.  I mentioned it to my husband when I got home, and that was the beginning of the quest for a Mustang for me.  It was really all my husband’s fault.  He sometimes gets these nutty ideas, like ‘life is short, why not do things to make yourself happy?’.  Despite the total impracticality of such a car, we somehow got focused on finding a Mustang convertible for me…for ME!    Why a Mustang, I can’t remember, but that’s what we had to have all right.

By the end of summer, we had found my baby.  I try not to get too attached to “things”, and believe me, we are quite thrifty people.  Second-hand has always been find with us.  I shop the super-clearance sections of the store.  But once in a while a thing turns out to be a very good thing, and my baby has been good to me.

Case in point is last summer.  I had just been diagnosed with rheumatoid arthritis.  I was swollen, I was sleeping in a lounge chair because it hurt too much to lay down.  It was painful to sleep, eat, dress myself, walk, move, anything.  Pain was everywhere, all the time, and many times I thought I didn’t think I could continue to live in that condition.  Sometimes I barely moved all day.  Often, though, my husband could coax me into shuffling out to the Mustang on a sunny day.  It hurt to get in the car, but once there, with the top down and the wind blowing through my hair and my tunes blasting out of the speakers, I could still feel that life was good.

I guess that’s the test of true love.  You enjoy the good times together, but you also support each other through the bad.  You give back as well as take love, and that’s what my baby did for me.  Yes, I love my car.

But not nearly as much as I love my husband…..

Me,My Yard and the Get Out of Jail Free Card1. June 20, 2012

There’s a couple of things I want to add to my things to do with the rest of my life list:

1.  Write at least one song that I can perform.  Oh, I got a whole other post for that one.

2.  Act some more.  Or act up a lot.

3.  Win the battle for the soul of my yard that I am only moved to wage periodically, especially now that I have RA and all.

So, here’s the Get Out of Jail Free Card part:   Went to see my rheumatologist the other day.  Since I’ve gotten off the wonder poison prednisone, some stuff’s started going wonky, especially my elbows and my right knee.  My doc offered me a shot of prednisone that hopefully would bring down the swelling and get me through a flare I’ve been having.  Says I to the doc, “Wow, you know that’s like offering parole to a prisoner?”  I thought my comment was pretty funny, but apparently making a career out of working with people in chronic pain doesn’t do much for your sense of humor.  He said, “yes” in the flattest voice I’ve ever heard.  Another goal is to make that man laugh before I die.  Or he dies.

A shot of prednisone is indeed a Get Out of Jail Free card, as you know if you’ve had one.  It will make you feel totally awesome while it’s coursing through your body.  The previous times I’ve had it I’ve felt I could put on my cape and tiara and rule the universe.  This time, I have to say,  not so much, but still feeling good enough that I’ve indulged in a copious amount of physical activity.  Which brings me to The Lawn.  Which I know I’ve mentioned in this blog before, but whatever.

The hub and I bought our house largely for the lawn, which is about half the size of a football field.  The kids were young then, and we figured they could run around out there til they dropped.  Which never actually happened.  Well, maybe once…

Anyway, our yard apparently used to be a wetland area, and there are drainage ditches at the property line in the back.  We get lots of moisture out there when there’s any to be had.  In the spring especially, anything will grow in our yard.  Which should be good news.  The bad news is, anything DOES grown.  Everything grows, all over, on top of everything else.

This still might not be such a problem except my husband takes a ‘naturalist’ approach to yard care, which means if he can’t mow it he doesn’t want to mess with it.  Trimming bushes, pulling weeds, etc. sullies the ‘natural’ look of the yard.  Not to mention it’s not fun to do.  I can agree with that, but I feel a certain amount of shame when our shrubs in the front yard are hard to distinguish from the weeds growing up around them, and our mighty pine tree in the front is being choked to death by vines that come up out of nowhere and take over, seemingly overnight.

I used to take more responsibility for keeping the yard looking half-way (and I do mean half-way) decent, at least until the dog days of summer set in.  Then everything dies anyhow.  However, last summer I was totally incapacitated, and the dang yard took the advantage.  I wandered out yesterday morning and started to pull up things.  Good news again, many of the weeds, if they haven’t twined around something, are pretty easy to pull up.  Unfortunately I can fill every trash bin we have and still have 3/4 of the yard to tend to.

If I keep feeling good, I’ll try to work in the relative cool of the morning for a half hour/hour every day, and at least the neighbors will see me out there trying.  There’s also a new ray of hope this year.  With both of us retired, my husband’s taken a bit more interest in the yard.  He’s borrowed a chain saw from a friend and he’s got a dangerous glint in his eye when he looks at our wayward trees and shrubs.  This could get interesting.

 

Well I’ll be…… October 2, 2011

Was finally prescribed ‘something more’ by my rheumatologist.  We decided on Humira, as he said it was comparable to Enbrel, but only needs to be injected twice a month.  Both are biologics, the newer wave of ra drugs that apparently target certain parts of the immune system rather than taking a broader approach.  They’ve been on the market for about 10 years and carry some risks, the most obvious being you can get sick, really sick, easier because your immune system is knocked out.

Another downside, of course, is they need to be injected.  However, they seem to work really well for a lot of people, and if you’re an ra sufferer it’s not long before you reach the point where you’re willing to do just about anything to get your life back, even if it’s shortened somehow.  RA will do that anyway, from what I understand.

The idea of poking myself with a syringe was pretty off-putting.  Even though I’ve been stuck maybe more than the average person in my life, due to a variety of disorders, and watched other people injecting medications, the thought of doing it to myself made me pretty queasy.

This is why I decided on the autoinjector.  It looks something like an epi pen, the big selling point being you don’t have to see a needle.  Just put it where you need to inject and push the button.  I could do that, I thought.

I always thought knowledge was power, so in an attempt to get some control over this whole injection thing, I went online to see how other people fared with the autoinjectors.  Not such a good idea.  There were a few people who said ‘no problem’, a few more who said there was some pain, but worth it, and a large contingency of bloggers, community members and you-tubers who said, ‘IT WAS THE WORST PAIN I EVER FELT IN MY LIFE …LIKE BEING STABBED WITH A KNIFE AND HAVING SOMEONE THROW A LIGHTED MATCH IN AAAAAAARGGH!”   I mean you wondered how they survived the injection.  Now I know that a lot of times people who actually post, especially repeators, are sometimes sort of …..over the top.   Er, present company excluded of course.  I also know that everybody’s pain threshhold is different.  But I managed to get  myself pretty nerved up about the injection.  Luckily, this also made me search for ways to make the injection less painful.

I set a day and a time to do the injection.  When it was 45 minutes before countdown I took the Humira out of the fridge, which is what everyone from bloggers to nurses recommend, but is not stated on the Humira site.  They say to keep it refridgerated.  Apparently ice cold Humira getting shot into your system is a great way to feel like you’re getting embalmed alive or something.  Fifteen minutes ahead I iced my thigh,where I had decided to give myself the injection.  I’d also practiced pulling up the skin and going “3-2-1” in preparation for pushing the button.  I’d viewed the instructional video a number of times AND made written instructions.  As the moment approached, I called Thor for moral support and to time the injection which was supposed to only take 10 seconds.  A little yellow marker also stops moving in the pen when it’s over.

I think my brain was probably frozen with fear, but my thumb obeyed and pushed the button.  I heard the click and at first felt nothing.  Some folks say you don’t really feel the needle.  As I waited I could feel a warm, slightly burning sensation that built and probably crescendoed at about 6 sec.  I remember thinking that I hoped it didn’t get worse, even though it really wasn’t too bad.  Then it went down, and Thor told me time was up.  I looked at the window and there was the yellow marker.  Surprised, I withdrew the pen and dumped it in the sharps container.

After accepting congratulations from Thor on being gutsy, I cleaned up the stuff and started moving around.  I swear I could immediately feel a slight difference.  As the day progressed, I found I had more energy, was more alert, had less pain, so of  course I overdid it and chugged on until 8 at night when my feet and ankles were hurting and I was exhausted.  Yep, still have RA, I thought.

This morning I woke and realized my legs weren’t hurting as they usually do in the morning.  I sat up.  Just like that.  I didn’t feel my way carefully through each movement, groaning as I pushed myself up and swung my legs over the side.  I just did it, almost like before this whole thing happened to me.  I walked, not shuffled, out of the bedroom.  I found myself reaching for things, climbing steps, kneeling, doing things I usually can only do much later in the day or not at all.  It’s  now 3 p.m.  I’ve been out shopping, I’m make dinner, I cleaned out my closets.  The only thing I can compare this to is being ‘normal’, or when I’ve been on prednisone therapy.  Thor is amazed.  We are filled with hope that we mights be able to have that life we planned on after all.

Being who I am, I am kind of waiting for the other shoe to drop.  Subsequent injections may not be as easy as this one was.  Some folks say the pain varies.  Yes, there are risks and the things that can potentially happen with these meds are scary.  Plus, it’s not unusual for meds that work to stop working for ra patients.

But right now I’m raising up prayers of thanks to God.  I’m enjoying every minute of feeling good.  Not perfect, but good.  I can still feel the ra in my body, but it’s just not a big problem right now. And it’s funny, how when you feel almost back to normal, it’s easy to forget that you haven’t been for some 6 long months.

My ‘terrible, awful, no-good, very bad days September 25, 2011

That’s what they’ve been alright.  Since I returned to work three weeks ago things have seemed to slide progressively downhill.  This past Friday the pain in my knees, legs and feet reached the point where  I was shuffling again.  I felt the difference in my energy level and emotionality, too.  I always feel weird trying to ‘rate’ my pain, but if I’m crying at the drop of a hat it’s a good indication it’s wearing on me.

I went home in the afternoon and put my feet up, but for whatever reason, it   didn’t sooth me.  During the course of the evening I reached that place where all I could do was cry.  I was disappointed, frustrated, angry that the improvement I thought I had been seeing wasn’t materializing.  I was again grief-stricken at the loss of my old life.  And, of course, I was ashamed that I couldn’t bear this with more grace and dignity.

When I’ve prayed about my rheumatoid arthritis, I generally don’t pray to be healed.  Well, I do, but what I really focus on is asking God to help me deal with  this with grace.  Sort of a, ‘if it’s your will take this cup from me, but your will, not mine be done.’  Yeah.  Maybe I just don’t want to be disappointed.

Anyway, on Friday I was more into, “My God, my god, why have you forsaken me?”  Yes, I AM a drama queen, aren’t I?  I remembered though, that I’d made a bargain with God before.

When one of my children, some years ago, was standing at the edge of a figurative  abyss I had prayed to God to spare him.  I pleaded his innocence, his guiltlessness, his compassion and innate goodness.  I prayed that my child be saved, and offered to take his place.  I prayed for the health and happiness of my children, and that was all I wanted.

When I remembered this, and thought of where both of my chldren had progressed to, that they were both independent and relatively happy and healthy, I was reassured.

I don’t know if God puts trials in our lives, or if all lives  just have times of trial.  I do know that at some point you look back and see what you’ve learned, how far you’ve come from that dark place you were in, and then, if you are a believer, you tend to see God’s fingerprints.

Living in the Future September 10, 2011

I went back to work this week.  It shouldn’t have been a shock.  I’ve been gradually easing myself in over the last few weeks, putting in a couple hours of desk work here, a parent meeting there.  It seemed to go well.  In fact, the structure of having a time to rise, a deadline for getting out the door, seemed to  help distract me from the stiffness.  I could do this.

This past week was the first week with kids.   Only 3 1/2 full days.   This week, though, I was focused on the priorities of the beginning of the year.  In my job there are certain tasks that MUST be taken care of and taken care of quickly .  They are frustrating, time-consuming, and seemingly endless.  Because a lot of the completion of these tasks depends on others, and some of the others don’t cooperate or apparently feel the urgency of the situation, I get aggravated.  There are also special projects and presentations to prepare for and carry out.  And then there’s children who want to talk, and adults who want them talked to.

3 1/2 days.  It’s not much.  But over the course of those 3 1/2 days things got worse and worse  By things I mean my ra symptoms.  I began shuffling again.  My back, which usually isn’t a big problem, began to clench up.  My wrists got sore. I realized that even though I was ‘only’ walking a lot around the building, and ‘only’ doing a lot of paper shuffling, and ‘only’ talking to parents, I was hurting and worn out.  I think maybe I was having a flare.  At first I thought things were worse because I was comparing this to how I felt on the prednisone.  But I’m more convinced now it’s the stress, and possibly the rain that’s made things worse.

Last night, on my birthday, I cried and cried out of frustration and anger.  When I have a flare, the emotionality comes to the forefront.  Eventually it results in a meltdown.  For whatever reason, I feel better afterwards, apparently sobbing it out of my system.  Today seems a litle better, I can rest up this weekend, and hopefully handle work better next week.

It’s times like these when I have to believe that in the not too distant future I’ll feel better, I’ll be more like my old self, I’ll be in remission.  The pain and frustration of the present can suck the hope right out of you.  What is, is.  But thinking about good things that COULD be can help you get through what is.

Just When I Was Having a Good Time September 3, 2011

So my previous post was about the great day I had…to a point.  And then you might say the other shoe dropped.

As most folks with rheumatoid arthritis do, I take a ton of meds.  I take methotrexate to halt the disease and hopefully, eventually help with pain.  I take 5 mg. of prednisone and 2 600 mg. tablets of ibuprofen a day to control pain and make it so I can live a life.  I take prescription Prilosec to buffer my stomach from the prednisone and ibuprofen which can cause bleeding, amongst other things.  I take fosamax due to my osteoporosis, although I suspect I’m only breaking even because the methotrexate, prednisone and prilosec all cause your bones to thin. I take folic acid to combat side effects of methotrexate.  I take iron because I recently became anemic, sometimes caused by rheumatoid arthritis.  I’m pretty tired of trying to remember when to take all these pills.  6 months ago I was a basic vitamin woman.  Because then I was healthy and ignorant of what the future was to hold.

I just became anemic in the few months, since  I’ve been on all the meds.  My internist suspected the prilosec was to blame.  My rheumatologist disagreed and wanted me to take it to protect my innards.  None of us thought there was anything very wrong, but to be safe, my internist had me do a hemoccult kit and referred me to a gastroenterology guy.

A hemoccult kit, for those of you who are blissfully unaware, is a handy-dandy, do-it-yourself, at-home stool sample collection kit.  For three days you get the really incomparable thrill of putting a tissue in the toilet, depositing a ‘gift’ upon it, and then digging at your poo with a little stick so you can smear it on a card and eventually (love this part) seal it in an envelope and let the U.S. Postal Service deliver it to your doc.  With wrinkled nose I completed my duty (and doody) and mailed it off to my doctor hissing, “Back to you, doofus”.  I delayed calling the G.I. guy.  I was busy, and not especially worried.

At my appointment yesterday my rheumatologist noticed the hemoccult results hadn’t been posted.  I thought they’d had plenty of time so I e-mailed my internist’s office, figuring it’d been lost in the mail (wow, I’d hate to find THAT lost letter) and I’d have to go through the whole odious procedure again.

No such luck.  While I was out getting ready to spend my “birthday reward” cards from a couple shops I frequent enough that I’m a ‘valued customer’ I got a call from Sharia at my internist’s office who, in a business-like manner informed me that the hemoocult kit had returned positive results, i.e. blood in my stool.  I told her I had, just today, set up an appointment to see the G.I. guy, but the first opening had been late October. Sharia explained my doc wanted me seen within two weeks and she would help me out and call over to Gastroenterology.  After thanking her I hung up and wandered back through the stores to my car. Shopping didn’t sound like so much fun anymore.

I got a callback in the next few minutes.  Sharia had gotten me in to see a G.I. guy on Tuesday.  As today is Friday, and this is the Labor Day weekend so no docs are working again until Tuesday, I thought this was pretty good.  And a bit scary.  I could imagine the phone conversation between Sharia and the G.I.guys.   G.I. guys:  “Sorry we’re booked for another month.”  Sharia:  “You don’t get it.  Her doctor wants her seen STAT!  For Christ’s sake, she’s got BLOOD IN HER STOOL!  She’s probably DYING!”  G.I. guys:  “OMG!  BLOOD IN HER STOOL?  We’ll cancel someone, anyone, we MUST get her in STAT!”

Yeah, that’s what I thought.  I again thanked Sharia, who said, “OK, and good luck!” which seemed addtionally ominous to me.  I felt myself tear up.  Crap, I thought, it’s not enough I get osteoporosis, then ra, now I have to be bleeding internally?  I just want to make it through this year, retire, and have a few years where I feel good to enjoy not working!  To sing!  To act!  To throw my skirt over my head and show my panties to everyone if I feel like it!

I felt a sob coming up in my throat, but then I just stopped it.  I’m a big cryer, and I’m all for expressing my feelings, but maybe after too much of the unexpected and unwelcome happens you reach a point where you just figure there’s no point getting too upset over what you can’t control.  Crying and agonizing over what will happen next isn’t going to do my body any good.  And I’d had a really good day.  I did go home and google, “blood in stool and anemia”.  This is always dangerous, but I’m learning how to pick the fact from the fiction/histrionics.

I really don’t suspect cancer.  The anemia, and I’m pretty sure the bleeding, is recent.  I had a good colonoscopy last time and am not due for another for two years.  Of course, that doesn’t mean the G.I. guy won’t want to do one.  And I suspect an upper G.I. thing or endoscopy or whatever they call it.   I’m going to have to go through some crappy medical procedures and it makes me feel like hurting somebody.  But I’ll do it.  I suspect they’ll decide all the ibuprofen I’ve been rocking is the cause of the bleeding.  They’ll probably want to get me off it.  My understanding is other drugs that will do the trick, but not hurt your stomach, are potentially addictive.

Well, at this point, I don’t think I can function without something for pain.  Maybe next month I’ll get put on Enbrel or something and it’ll do the magic I keep hearing about and I won’t need pain killers.  Maybe I’ll go into remission.  Whatever, it looks like I’ve got a lot of ground to cover before then.

The Day of Cleaning Joyously September 2, 2011

Today was almost totally awesome. The almost part will be addressed in the next post.  The awesome part was due to my getting a shot of prednisone yesterday while at the rheumatologist for my inflamed knee.  I was warned not to exercise excessively to let the prednisone do it’s work.  No big hikes or bike rides.  But they didn’t say anything about cleaning.  And I was ready to clean. One of the problems with rheumatoid arthritis is you just don’t have the flexibility or energy you had before.  Reaching down to wipe something up can be a major endeavor, and you wear out easily.  This really tears me up because my pre-RA self was a fearsome multi-tasker who could go all day, concientiously following the list I made in the morning. But that’s no more (usually) me.  That’s RA for you.

But not today!  Prednisone takes away all pain.  Not only that, but I wondered midway through the morning if the doc had slipped a little something extra in for me, as I was brimming with energy and good humor.  I had only one task I really had my heart set on:  clean my bathroom.

My bathroom was remodeled about two years ago.  We covered the rather battered walls halfway up with white wainscotting.  I sponge painted the rest of the wall a sky blue.  We got new flooring to cover the awful pink chipped tile floor.  We covered our old tub and shower area in white with whatever it is they cover tubs with.  I got a new pedestal sink and toilet and hung photos of Arcadia National Park flora.  I love it.  Hardly anyone else uses it. Lately  I sadly would look at the dimmed white of the wainscotting waiting to  be cleaned, the dust that gathered behind the sink and under the white cabinet.  I just haven’t had the energy to keep it up.

But today that would change.  As I prepared to tackle the bathroom, though, I ran into a problem.  Everything I touched in the house seemed to scream to me, “Hey, me too!  What about me?  See the dust here?  When are you tidying us up?”  Before I knew it I was happily stripping the bed, including the dust ruffle (which had obviously been doing quite a job), cleaning out the linen closet and tromping up and down the basement stairs to do laundry and go into my seasonal silk flower collection to change my home’s decor to autumn.  “I might not feel this good again for weeks!” I reasoned.  “Get ‘er done now!”

Then I did my beautiful little bath, Formula 409ing the wainscotting and tub (per installer’s directions), completely cleaning out the white cabinet, taking everything out so I could REALLY wash the floor.

My brother called and I walked outside with the phone to put some bills in the mailbox.  On the way back in I got what seemed like my first look all summer at the front bushes.  There was a vine growing all over one.  The damn Rose of Sharon bushes were invading there too. (Yeah, they’re pretty until you’re pulling them out of the lawn, the garden, the bushes…don’t get me started!) I went over and started to pull down the vine and hesitated.  I suspected I was overdoing it.  I told my brother who said, “Step away from the bush, L.”, and I did because I knew once I got started I’d pull and clip until my shoulders screamed.  And then I’d pay even bigger in the next few days than I already suspected I would.

I was done cleaning, but I continued on to run errands, getting my flu shot early because the next round of drugs I’m on will probably really kick my immune system, taking back a defective fan Thor bought the night before.  I planned to do a little fun window shopping, and I even had some “reward” coupons as my birthday was coming up.  Then I got a call.  I’ll talk about that in the next post.  The call threw me, and I almost went into my ‘crap, why is this happening to me, sob, sob’ thing.  But I dried up in a few minutes.  I’m learning there’s not much reason to get upset about some things. Well, there may be a reason, but it don’t change a thing if you get upset and probably makes it worse.  Not that I’m against venting or expressing feelings (obviously), but sometimes you just have to say that expression we’ve all come to  hate, “It is what it is” and let it go.

So I did my best.  It had still been an awesome, joyous day.  I’d been happy.  I’d been without pain.  I’d felt pretty much like my old self.  I wasn’t going to let bad news take that away from me.

Barbie in the spotlight August 28, 2011

Yesterday I sang publicly for the 2nd time since I was diagnosed with rheumatoid arthritis in May.

The first time was a church event, and I was successful, I’m sure, only through an act of God, because for several days before I’d felt horrible both physically and emotionally.  Yet, somehow, come the Sunday of the big event, I was able to walk, stand up, sit down and sing all I needed to, which was considerable.  I wasn’t so good at unflinchingly accepting  handshakes of well-wishers who didn’t know my joints couldn’t take the pressure they were applying.  But Lord, was I happy.

Over the summer I intended to go karaoking as this is my other opportunity to get performance experience.  No one is yet knocking down my door offering to PAY me to sing  so I take what I can get.

I didn’t go, though, not once.  One of the hallmark symptoms of RA is fatigue, and I’m now usually out like a light before karaoke even starts.  Plus, the stiffness is often in my neck and jaw, which is a little daunting when you’re trying to sing.  Heck, even getting up and performing can be scary when you’re hands won’t straighten out like everyone else’s does.  Maybe no one sees that you’re different, but you do and you think THEY do.

So here comes my voice recital yesterday.  I’ve taken lessons for a few years from a woman younger than myself who has been unfailingly supportive and encouraging.  She has also been amazing at using visualization techniques to help me improve my singing.  Having more control over my voice has helped me get rid of a lot of the nervousness I’ve felt over performing.  In fact, the little girl who was painfully shy and terrified of having attention brought to herself has developed into quite the ham.

I agreed I’d do the recital which involves me singing one song and usually being one of two adults to perform.  The rest are teens or younger, vocalists or piano players.  I usually end up being last. I always feel a little embarrassed at the fact that here I am, a (ahem) “mature” woman, so desperate for a chance to sing that I’ll wait out 45 minutes of 8-year-olds playing Chopstix for a chance in the spotlight.

I have a fondness for the old standards and the time period they remind me of.  I’ve probably said here before that my fantasy was always to sing in a smoky jazz lounge like Billie Holiday, or Lena Horne.  I loved the era, the clothes, the music.  I grew up listening to Nat King Cole, Ella Fitzgerald and the rest.  I can sing other genres, and I enjoy it, but the standards are what I do best and  where my heart is.  I picked “Someone to Watch Over Me” as my piece.

From the time I woke up yesterday until an hour before I left, it was touch and go.  My joint pain at this point doesn’t seem to be incapacitating, but I frequently have chills, allover sensations of pain, difficulty walking normally and a generally poopy feeling in the morning.  It’s usually remedied when I can take my prescription strength ibuprofen, but as I can only take two a day, I try to space them so I can feel comfortable as much of the day as possible.  It came to my rescue again.  A half-hour after I took it, I was good to go.  I even put in my contacts and put on makeup.  And off I went.

As I sat through the recital, I felt fine.  I wondered if when I got up to go onstage it would be difficult to rise.  I wondered if my voice would break as it does now sometimes.  But I guess I’ve gotten to the point where I figure, ‘whatever…what will be will be and I’ve never died of embarrassment before.’

It was my turn, and it went well.  People complimented me.  One woman who had seen me sing about 6 months prior said I was even better than before.  I was surprised.  Maybe my singing ‘career’ will not be ruined by my rheumatoid arthritis.  Maybe more parts of the old me can survive than I had hoped.

There’s times with this disease when you feel your old life, the being you were, is gone.  You feel so painfully the things you can no longer do (at least for now), you despair of being sick all the time, of not having the energy and joy you once had.   But for me, yesterday was  a sign of hope.  Who knows in the future what I will find I still can do, what new discoveries about me I might make.  The knowledge that I still have a future, a good future, though changed from what I had envisioned for myself before, will carry me through the dark times.

 

Even Luckier August 21, 2011

OK, this post is about my stinkin’ rheumatoid arthritis (hmm, maybe I haven’t quite reached the ‘acceptance’ stage of this), but also about counting your blessings, because I’ve been lucky in a lot of ways with how this developed.

I thought I’d write about my ‘luck’ because I woke up feeling sore and sorry for myself.  My pain is not what I would call excruciating.  You just get tired of waking up with it every day.  Every single day.  And thinking about waking up with it for the rest of your life.  You get tired of wondering how much of each day you’ll feel relatively ‘normal’.  You get tired of rejoicing over the good days and getting your hopes up, only to find the next week is not nearly as good.  You especially tire of those days when you find yourself spending the day curled around heating pads in a lazyboy, because you just can’t push past the forces warring in your body.  Vented a little bit to Thor (aka  the Saint, a handle he has made known he is not happy with), took a shower and felt better.  And that’s when I remembered.

About 15 years ago, the drugs that are now used routinely to stop the progression of ra, help with the pain and even nudge you into remission didn’t exist.  Some of my contemporaries who contracted ra in their young adulthood have permanent damage, and horror stories to tell about what they’ve gone through.  Risks?  Yes, the drugs carry risks.  But if you have ra, you know you reach a point where you’re about willing to take any risk so you don’t feel like putting your head through a wall. So you can just live a life.

I ‘got’ ra at a point in my life where I have a stable, VERY long term marriage, grown childen, and a career history behind me that I am proud of, and now feel ready to leave before too much more water passes under the bridge.  I can’t imagine being a young adult trying to date, establish a career, being alone, being a young working mother.  Holy Pepita….just don’t know how people do it.  As I contemplate returning to work, I wonder if I can work through the morning pain, the ‘sick’ feelings during the day, the fatigue.  But for me, if I can’t, well, I’ll just catch the boxcar out of Workworld a little early.

Also, I’ve reached the point where I know there are good days and bad days.  Kind of a drag if that thought pops into your head when you’re feeling good, but nice to know when you’re having a ‘bad’ day.

Off to make crockpot veggie chili for my family dinner tonight.  Peace out, buds.