Monthly Archives: August 2011

More Thinking About Perspective

Perspective

When you find out that you have (or someone you love deeply has) a chronic condition, whatever that chronic condition is, it is kind of like suddenly finding yourself lost in a lonely little rowboat in the middle of a dense fog bank.

You may not be alone.  You may have the best support system around you that you could ever dream of having, but finding out your new reality hits you so hard that you suddenly find yourself lost.

The sun may burn off the fog in hours, days, or months.  The wind may fill your sails and push you out of the fog.  It may roll back in later, but it will likely not be as thick or as frightening the next time you find yourself feeling lost.

If you are the one in the fog, reach out to the light houses along your way, find your candle on the water to help you find your way.  If you have been in the fog… you can be someone’s lighthouse, even if it is only virtually (on line… on facebook or other social networking site, or in another medium).  If you love someone who finds themselves being lost… understand that the fog can roll in suddenly and overwhelm their little boat… throw them a rope so they can feel safe.  Knowing the rope is there, knowing the light house is there, knowing that there is anyone who gets it (understands, has been there, gives a dam) is sometimes the most important thing in the world.

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My Pre-OP arm

This is my little scar from my last surgery.  It was a LITTLE scar until they had to go back in and clean out a eensy little problem with a leaking blood vessel that they didn’t catch during the surgery.

Adam still talks about the scream that I let out when the original stitches ripped out and the blood drained out through the cast.

This is the top side… it looks mostly normal from here…

And my knuckles don’t look too awful.

I will be really glad when I can take my meds again so it doesn’t get bad…

This one creeps me out big time… This, coupled with the “yeah, you are probably feeling the bones move both in your arm and in your imagination” just makes me wish that Friday would get her NOW… it can’t happen too soon.

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That’s About The Size, Where You Put Your Eyes

Been humming the old Sesame Street song, That’s About The Size Of It… Here are the lyrics Oh everything comes in its own special size I guess it can be measured by where you put your eyes It looks big … Continue reading

Two Weeks Off Meds

Up bright and early this morning… nothing out of the ordinary there, I’m almost always up obscenely early.  But this morning I’m not enjoying it nearly as much as I usually do.

I stopped my Enbrel and my MTX about a week and a half ago… and I’m really feeling it the last day or two.  My knuckles are achey… the front half of both feet feel tingly and achey and my toes are starting to not feel right again.  I was hoping it would take longer than this to start feeling the “going away” effects of the meds, but no such luck.  So I’m taking naproxen to try and ease out the swelling this morning and looking forward to being able to take my meds again.

And according to my surgeons (and I think having doctors with a sense of humor is awesome) I can start taking my meds a couple days after the surgery.  It made the PA laugh that I was so surprised…

Yesterday was my pre-op appointment.  I found out that it isn’t just in my head that I feel the ends of the bone in my arm moving sometimes.  It probably is, since they aren’t connected to each other.  And they have apparently never been connected to each other.  Nice.  At least I’m not smoking anything anything good and imagining it.

The PA told me that they are going to chop off the ulna and wrench my arm to make it able to turn the right way (to pronate, to supinate, to make it work the right way).  In my heart I don’t really want to know the details, but it’s good to be told.  The answered all my questions about how the chopping off is going to work, what will happen inside my wrist when it happens and they calmly told me all of the ways that this works.  In my case it will be cutting off the end.  Other people have to have he middle of the ulna chopped out and the end affixed to the end of the radius so the twist happens in the middle of the arm instead of the wrist.

They figure that the surgery will take at least 3 hours (give or take) and it is the kind of surgery that they do all the time.

They took time with me and talked to me.  Told me that I need to be taking Naproxen (not the over the counter kind… the holy crap dose they can perscribe) to keep the inflammation down now and for the next month or so so I can heal until the Enbrel and MTX can kick back in.  Not thrilled about taking so much, but if it will help and it is just for a specific time frame, I will suck it up and keep my body in as good a shape as I can for the time I need to.

So today I go on a ‘script’ run to the pharmacy and get both pain pills and NSAIDs.

I’m kind of scared of all this.  But I probably would be more scared if I wasn’t actually looking forward to being able to use my hand again the right way and all of the weird places and all of the new ouchies are.

The saga continues.  I am going to take a nap while this morning’s over the counter meds dose kicks in and hopefully enjoy the biggest part of the day.

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Insanity in Green

She screams at the vacant spaces In the place where her internal demons scuttle Shit and silence and solitude Coil around Tripping her Tongue, feet, memory Gripping her Word with lonely fear and madness Sadness Ripping her Heart from her … Continue reading

10 misconceptions about RA

There are so many myths floating around the world today… here are a few that irritate the crap out of me.

–Rheumatoid arthritis affects everyone the same way.

Kind of like one of my LEAST favorite RA commercials… My RA isn’t your RA.  I had 28 joints involved at one time.  Now I have four, so not only is my RA different from everyone else’s, mine is currently different from what it was before.  Mine may be different a year from now than it is now, that’s why maintaining a frequent open dialog with my Rheumy is critical.
It affects mainly joints, but can also damage heart, lungs, liver, kidneys, and eyes.

–Only old people get rheumatoid arthritis.

Only people who are alive can get RA.  OSTEOARTHRITIS is more common in older people but RA touches the lives of 1 our of 750 women in their 20s and 1 in 2800 men in their 20s, and can affect children as well.

–If you don’t look “sick,” you don’t really have rheumatoid arthritis.

This one I think is the one that irritates people who have RA more than anything.  I have never looked sick (except maybe when I had the flu).  Yet, I have joint damage in my fingers and my toes.  I ache.  My body is fighting itself, but to look at me, you can’t tell.
Even at the end of both of my half marathons, I have hurt and been amazingly tired, but I don’t look like it.
And add to that, I’m me.  So… I, yeah, I am the Mary Sunshine one who doesn’t let on no matter how much I ache.  You have to be quick to catch a wince when I move the wrong way to even think maybe.

–Rheumatoid arthritis is a normal part of aging.

RA is a disease.  It is your immune system turning on your body and fighting it like it were a disease.  Despite nearly 1.5 million Americans having RA, that is by far not the majority, so it isn’t ‘normal’

–Rheumatoid arthritis symptoms aren’t treatable.

RA isn’t curable, but it can be forced back and the damaging pain and inflammation can be treated.  As I said, I used to have 28 involved joints and now I’m down to 4.  The pain is way lower than it used to be.  If I had gone earlier to the doctor, I probably would have made it much quicker to where I am now.

–Rheumatoid arthritis quickly leads to disability.

According to my Rheumy, she has gotten four people disablity in the last two years.  There is nothing to say that you can not live a long and reasonably comfortable life.  You can be productive.  You may need to change how you do some things, you may have to be creative.  You may even have to rethink your career and change what you do (maybe re-start an old dream?) but even if you can’t work, you can still be productive by being a volunteer or communicating on line and providing your wisdom to other people.  The only thing I can say is that if you resort to continuous whining, you will end up making yourself feel more bitter and less at peace.

–If you have arthritis, you shouldn’t do physical activities.

I have walked two half marathons very quickly.  I know other people with RA (some in my yoga class) who are also active and who can do things to keep themselves active.  Again, you may have to change how you do things, make adjustments.  Even if you can only do corpse pose in yoga (laying and relaxing and breathing and taking account in your own body) you can still be physical and find your relaxation and peace. Trite and irritating as the phrase and the commercial is, My RA isn’t your RA, but you can do something and even the smallest and easiest movements help your mobility.

Staying as physical as your body will allow will also help you feel as normal as you can and keep you from getting as depressed as quickly and easily.

–Any exercise is good for rheumatoid arthritis.

Despite what my coworkers ASSURE me, loudly and repeatedly, this is not true.  My doctor (who I check with no matter what changes I’m making) has told me that I personally should not do Pilates… yoga is okay for me, and walking a half marathon (NOT RUNNING… never running… but walking very fast) is great.  The chick on TV can do stairs and the gym machines and the guy on TV who is helping her seems to be cool with weights.  Ask your doctor what you should avoid.  And, if it hurts, it is not a deal of no pain no gain… if it hurts, stop, or reign it way in.  You would be surprised what a work out just walking back and forth in the pool, or sitting on the steps of the pool and just moving your arms and legs in the water can be.

It irritates me SO much that I get dumped on by OH SO WELL MEANING (saccharine sweet sarcasm) people I work with because the wonderful exercise that they manage to do for three MAYBE four weeks until they give up because it is too hard is the exact thing I should be doing all the time.  They look me in the eye while I’m wearing my half marathon finisher shirt and tell me I’m just too lazy to do THEIR routine, and I’m using my doctor as an excuse.

Yeah, that’s it, skippy… I’m just lazy.

–Living in a hot, dry climate can cure your rheumatoid arthritis.

It can NOT cure RA.  It may actually irritate some people’s RA.  Again, each person is different… each person can have different things that cause a flair.  Is it worth a shot to see if it will ease some of your symptoms?  Maybe.  That is a judgement call.  If it helps, YAY, if it doesn’t, it might be costly to relocate again… But CURE it, no.

–You should wait until you have serious joint problems before you start taking medications.

You shoud seek medical advice LONG before you have serious joint problems.  Once you have serious problems (and yeah, this is me, the choir, singing about the sermon) you already probably have serious damage.  The sooner you can go and see about symptoms that MIGHT be RA, the easier it will be to fight the beasty and the fewer potential long term joint issues you may actually have.  And don’t be so afraid of injections that you make the same stupid mistakes I made.  I could have saved a whole year of feeling exhausted and pukey if I had sucked it up and tried injections from the get go of Methotrexate.

Up and trying to loosen up

Up early this morning even for me. Starting to feel the stiff achy creep in. It’s been a week and a half without either enbrel or mtx and I’m starting to feel it. I think it is going to be a long month…
Today is yoga day and pager turnover day so it isn’t like I’m not looking forward to today. I think it is helping sitting here in the quiet dark not quite meditating, but at least communing with the local owl and the morning freight trains. Even the silly wiggle dog isn’t minding the 78 degree morning. It definitely is better than the 105 that it will be this afternoon.
I’m thinking that no matter what my brain thinks about how wonderful a nice hot bath would feel, a cool soak would probably make my fingers and toes feel better. I wonder if maybe I could find a way to soak all but my hands and feet in a hot bath and those in cool water… Hmmm… Probably not and be very comfortable, huh? Ah well.
Well… Have a marvelous Thursday!

Feeling Decidedly Down

So… Sitting here thinking about it being the launch day of the Rheumatoid Arthritis channel on WEGO Health.  I’m one of the video providers.  I’m not sure how I managed to make it into the running as an activist.  It is one of those days/weeks when I keep asking myself who do I think I am.  I suppose it doesn’t help that I’m facing down the barrel of surgery to probably not fix my wrist or that I haven’t had ANY meds in a week for my RA.

It doesn’t help that it is pager duty week and I’m barely able to stay awake to get stuff done let alone get my videos done… guilt…

It doesn’t help that Squirrel Girl’s doctors are butt heads and figure the BEST thing we can do is circle like buzzards waiting for carrion…

Who do I think I am to be an activist.

RA Pain

I’ve been working on pulling together my first couple of Videos for WEGO Health TV on RA and I posed the question to a group of online friends (partly to get the answers… partly to generate a lively discussion about what RA pain is like).

I was partly surprised at the answers… and partly not so much.  The physical description was what I thought I was after initially, and I got that too.  Now, I’m not so sure that is actually the best way to attack it.  I think it matters even more to remember that all of the pain in RA isn’t necessarily the pain in our joints or the utter exhaustion that we feel.  The pain itself is only the beginning… and in a lot of cases not the worst.  The worst of the pain in what happens in your head and in your heart.

Think about the things that you treasure most in your life.  Not the money stuff, the stuff that really matters.  Now, think about what if it hurt to do them.

What if it hurt to hold your 5 year old child’s hand on the first day of school?

What if you couldn’t get out of bed to watch your baby graduate from high school because you were in so much pain.

Holding your first grandchild

Baby sitting your neices and nephews (maybe you can’t lift their tiny body because of the pain and fatigue and weakness… maybe you are scared to death that your joints will give way and you might drop them)

You wake up one morning and your kids are depending on you to get them to school or to camp or to a sporting event (maybe counting on you being there to watch them for the day) and you can’t get out of the bed because your body refuses to listen to what you are telling it to do (muscle memory works in reverse, too, sometimes your body just get pissed off at you and won’t do what it knows will hurt) and your kids are late for the imporant events, events you never do get to attend.

You love to take pictues of all of the events in your family’s lives, and you can’t hold the camera long enough to take the pictures any more, or steady enough to.

You write… communicate with friends or family, or write for disbursing information and pleasure (poetry, stories, journals) and you can’t type for long periods of time (if at all) any more and holding a pen is difficult on a good day.

Pealing an apple with a paring knife

Knitting

Crocheting (my mom remembers a great aunt crocheting with thread when she had RA, her hands were so knotted and her fingers so twisted that she had to use a pillow to help hold her thread and her projects and she fought the pain to be able to make the stitches)

Picking flowers… gardening… cutting the grass…

You are too exhausted to go to family functions (holidays, birtdays, celbrations)

You can’t walk to the mail box most days because your toes and ankles and knees and hips hurt too bad.  You fight your body after half a day at an ammusement park because your feel hurt so bad and are swelled to such an extent that they won’t carry you from one bench to the next or from the parking lot to the hotel room.

You see the hurt look in someones eyes because you instinctively (not deliberately) flinch when they try to hug you or shake your hand or touch you.

You cringe and fight back tears when you see that the guy is cleaning the revolving door and you know you are going to have to try to pull open the regular door with your hands.

You avoid going to the zoo, or on a field trip, or a concert because you can’t get a “good” seat or you don’t know what steps you might have to walk up, or if there will be a place to sit down to rest (or time to sit down to rest) or what the bathrooms will be like (autoimmune disease means that you have to think about what you are touching and who might have touched it before you, who wasn’t quite as clean as they should have been maybe fixing your food or opening the bathroom door)

You try to figure out how to make the keys to the car/door/mailbox big enough (or turn easy enough) that your fingers will be able to unlock or lock or start or shut off whatever it is that needs the key to work.

you can’t color because the crayons are so small

You know that someone avoids anything physical with you because they are afraid that they will hurt you.  You maybe appreciate that they are being careful, but there are times when you would much rather deal with just a little extra ouchie rather than dealing with feeling like you are a bother or that you are too RA to be touched and hugged and played with.

Not every day is this bad.  Not everyone has these situations or has them to the same degree (my RA isn’t your RA as the commercial says) but it is what it is, and it always will be. But everyone with RA has had the pain that hurts the body, but hurts the heart and the spirit even more more times than anyone would like to remember.  And that is a pain that Prednisone or NSAIDS or even Darvocet can’t chase away.  It is a pain that pokes at you every time you remember what you miss.

I try hard to stay positive most of the time in my life.  I figure that how I look at something is as important as the something I’m looking at.  But sometimes reality is what it is and some things just need to be said.

Share Your Favorite Rheumatoid Arthritis Activists & Resources with WEGO Health!

Well… I’ve gone and become an activist…

 

For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company – with a mission to empower the top 10% of online health social media contributors to connect with one another and with healthcare companies.  They call those folks Health Activists – but they’re people like me and you who are community leaders, bloggers, on Facebook, on Twitter, leading online forums, and usually “all of the above.”

 

As part of their mission, WEGO Health has recently launched a new Health Activist video platform called WEGOHealth.tv where they are presenting the authentic voice of the online community in the form of Health Activist-created videos and resources.
Right now, they’re working on a Rheumatoid Arthritis Channel and they’ve asked for my thoughts on resources and video ideas.  I wanted to make sure that all of you had a chance to weigh in as well so I hope you’ll take a minute and let them know what you’d like to see on the channel!  You can share your resources and ideas (or just sign up to get notified when the channel launches!) here: WEGOHealth.tv Rheumatoid Arthritis Channel.

 

By sharing our favorite resources and tools, we’ll help to make this new Channel as valuable as possible.