Category Archives: rheumatoid arthritis

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On NOT Living In Fear

A very talented musician and artist died this week.  Glenn Frey died of complications for RA/Crohns/Pneumonia.  When I heard what the cause of death was, I stopped one thought about the fact that… he was like me.  He struggled with … Continue reading

Starting a New Support Group

 

So, Kim Nolte and I started a new support group on Facebook.  Living Life Large with Rheumatoid Arthritis.

The idea that winded its way through my brain, as I walked home from Giant Eagle on Thanksgiving morning (yay needing milk), was… most groups seem to spend a lot of time “one upping” each other on how bad their RA is, how bad their pain is, how much they can’t do.  If anyone (including my boss) has noticed anything about me, it’s that I try to do as much as I can do despite my RA.

This, apparently, is a good thing.  This… apparently… is motivational to people.  So, we were talking, and we decided that motivational is a good thing.  So we started a group for just that purpose.  People with RA, to lift each other up, to provide useful dialog.  Yeah, some kvetching and bitching, because, let’s face it, RA kind of sucks even if you are determined to keep going.

The ground rules… no bullying… not dumping on people for their religious beliefs… no dumping on people for speaking a different language (they have really cool tools to help translate different languages… google translate got me through my Brazil project at work, it can freaking close the RA gap between people, too).  RA bullies us enough, we don’t need people bullying each other. I’m a  DBA (literally, database administrator… but philosophically(( LONG long story)) dat bitch April) and I will not hesitate to delete someone for behavior unbecoming the group.

SO… if you are on Facebook and you have RA (not to bully, or shun anyone here… Fibro, Sjogrens… any of the wonderful flavors of pain we deal with) and you want to have some support and motivation… come join us.  I have a really hard time with being in your face with self promotion, but I really think this is something worth being outside your comfort zone with… COME ON DOWN… and join us.

It’s very disheartening to see 2 members every morning…

That Time of The Month Again

2010 09 07 16 49 28

2010 09 07 16 49 28

Not quite dawn and here I sit, waiting for it to be infusion time.

I wasn’t totally sure I was going to be allowed to get my infusion today… I have been messing around with an infected toe for… well… several months.  You would THINK I would have had it taken care of long ago, since my out of pocket maximum for the year is well past and I should KNOW better than to mess around with stuff too long.

I didn’t.

Instead I waited for it to get better on its own.  I cleaned it all the time and kept bandages on it (to keep my sock from sticking fast) but it would not heal.  Finally I went to the doctor (have to go to the family practitioner first so they can look at my toe and tell me it is infected and I should see a podiatrist.  They can also tell me that I don’t look like I have RA because all of my fingers and toes point in the ‘right’ direction and “Let me TELL you about my mother’s RA.  It was so bad, when she was 70, that she couldn’t make a fist any longer and rather than pulling weeds, she took to pouring gasoline on them”… so yours must not be that bad.

grrrrr

sigh

So, I go on a mad podiatrist hunt.

There is something about being affiliated with a megalopolis hospital system (I thought… ha ha ha) is that there are bunches and bunches of doctors in the system so I would probably not take FOR freaking ever to get in to see any given specialist, even if I would have to drive 30 or 40 miles to see one.  Yeah… NOT so much.  I have an appointment (the soonest I could get) December 10 35 miles away.  They changed it from the one I had on December 28th just up the road.

I was a bit miffed, to say the least.  I have two ‘races’ coming up in December and I really didn’t want to have to deal with it that long.

The ‘other’ hospital system wasn’t any better.  They could work me in on December 18.

There are hospitals and medical pavilions EVERYWHERE around here.  HUGE ones.  Dermatologist?  six months waiting list (better hope that melanoma can wait just a LITTLE longer… ).   My family doctor is taking “sick people” appointments a month out and physicals are three or four months out.  <<that reminds me… it’s time to make my April appointment for my physical>>

I remembered the third option for doctors and… amazingly… called Friday and got worked in on Monday.  The doctor, argyle socks, burgundy denims and an incredible bow tie, was amazing.  His computer had a 26.2 sticker on it (made me smile).  He fixed me up before I left.  Cleaned out the yuk and its cause and made sure it would say gone (at least for the foreseeable future).

He told me that my RA has spawned bunions (haven’t you noticed your running shoes fitting less well?) that may need to be addressed in the future. He sent me on my merry way.

I emailed my doctor yesterday to make sure I should ACTUALLY come in for my infusion.  No answer, so I guess I should.

So here I am, dressed in sweats and a long sleeved T-shirt getting ready to go to work at the other computer in my office and get some crap done… in a couple hours I will trot off to the doctor and infusion center!

I hope they have the yummy graham crackers today…

For now, let me leave you with this parting observation… if something hurts, have it looked at.  Don’t put it off hoping it will fix itself.  Don’t chalk it up to old age.  Have it looked at.  You are worth feeling better for…

Author: April Wells
Updated November 11, 2015

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WHY ME!?!?!?!?

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Sometimes it gets very easy to fall into the  “Why Me”s. Why do I have this <insert what this is>? Why do my kids have to fight <whatever it is they are fighting>? What did I/We/You do to deserve this? … Continue reading

Brushing My Hair

20150314_141350As often as not, we of the great RA club, hands have issues.  Sometimes they hurt.  Sometimes they are just really tired, or have limited range of motion.  Regardless of why or what or how, hands tend to be a little more of an issue than some other pieces and parts.

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While being a part of the club also often means that (thanks often times to the drugs that work to keep the rampant inflammation in check) we might have thinning hair, it is important that we can work to maintain at least appearances the best we can.  You really do feel better if you can find a way to make yourself look a little more human.

Something I’ve always enjoyed doing is brushing my hair.  I also like brushing my kids’ hair but they are kind of getting old enough that they don’t need me to do that for them anymore.

I have discovered the usefulness of animal brushes.  Not all brushes are easy on my hands, but the ones that don’t actually have “normal” handles are much easier on my hands and wrists.  Some of them remind me a lot of the horse brushes we used to use to brush out the horses when I was growing up.  Those brushes are REALLY big, compared to a human head, but the idea is really neat.  You put your hand inside the strap and you don’t have to actually hold onto anything. The other alternative (the ones I found this morning that are a lot like the one that my daughter lost in Sequine when she went for drill team) has a kind of handle on the back of the brush that fits between two fingers on your hand and you don’t have to hold onto them at all.

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Granted, these brushes aren’t cheap.  The blue ones are <insert OOOOOOOOoooooo here> are Martha Stewart Pets brushes and are 13 dollars a piece at PetSmart.  The others are ConAir Pro Dog brushes. They are smaller and lighter and roughly half the price.

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There are several different styles, several different “tooth” styles that are effective on different styles of hair.  Today one I found was Boar Bristle (with Nylon) and it feels really comfortable.  One of the ConAir ones that I found today was just srpingy wire and I thought it was probably going to be too hard on my head.  I might be wrong, but I really didn’t want to take the chance.  I have a variety now, some I can just toss in my bag when I go to work or on a run.

While I do understand that there are people who have a very great aversion to combing their hair with a dog brush even if it has never been through a dog’s coat, I also know that I’m learning more and more that I need to not worry about what people think about what I do.

These brushes help even when I’m having big issues with my fingers.  I’ve used all of them today, to see the differences.  I’m glad I found them.  I’ve been looking for the replacement brushes since 2011 when my last one went missing.  They help.  And they are very much worth the money I spent to be able to comfortably brush my hair.

At least they are worth considering if you are willing to take the chance.

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Where did my week go?

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Sitting in front of my window watching out at the not quite yet winter storm round whatever round this is.  We are supposed to get half a foot of snow by tonight.  Should be interesting.  I plan on surprising the … Continue reading

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Freaking Cold

So… today I go back to work.  A week of vacation and a day of work from home and today I go back.  It’s going to be -1 when I start my mile walk from my parking lot to work.  I’m … Continue reading

Twas the Day After Christmas

Sitting here in the livingroom smelling the remnants of yesterday’s fire, Christmas tree for company and Mythbusters on TV. Pumpkin pie and coffee…  I started my work day early today trying to get ahead of any curve that might be coming my way when “normal” people come in.  Something tells me it’s going to be a long day.

The flu brought on a flare.  My fingers are not happy and my knee/ankle/foot combination are very very not happy.  I’m thinking that working from the couch with my feet propped up on the coffee table might be my very best bet for the day.  Yesterday my knee/ankle was very bad by the end of the day.  Bear barely bumped my knee and I winced in pain.  I sat on the floor watching the turkey for the last half hour of the turkey cooking time… watching to see if  I could see the timer pop up.

The turkey was very very greasy.  The skin wasn’t the yummy crispiness that Thanksgiving’s was.  But it was a good turkey.  The ham was ham.  Dinner was really good, though.

Today, I’m thinking back over the last year, trying to psych myself up for the rest of the day and trying to be gentle with myself.  Tiger Balm fills the air.  I have checked the weather report fifty times.  It’s not going to get cold.  I’m almost as disappointed as my son that the weather refuses to turn seasonal.  It’s going to be 47 degrees today.  It’s going to top 50 again tomorrow.  I really really want to see the cold and the snow.  Logic dictates that there is lots of time for the season to turn cold but Christmas is Christmas and it was far from white.

The holidays are not over yet.  There are still hours and hours of potential stress and festivities.  Whatever you do, remember to be gentle with yourself.  Be gentle with your body and take time for absolutely nothing… it can certainly pay off.

What did I learn from having the flu?

— be very VERY careful in a race situation.  You come into contact with the germs of thousands of people and, an already compromised immune system, germs are germs.
— no matter what anyone thinks, the doctors, the CDC and the vaccine manufacturers all agree… the flu shot is reasonably effective in lowering your chances of the strains of flu that are included in the vaccine, not the ones that aren’t.  It will not prevent the flu and anyone who comes up with the snarky remarks about you should have gotten the flu shot and you wouldn’t have gotten the flu if you would have just been smart and gotten yours is full of… um… themselves.  BUT this is assuming that the CDC and the Doctors are a little more edumacateded up than Lucy Lou and Skippy down the street are.
— the flu sucks.  All kidding aside, I don’t ever know if I have hurt in that really horrible all over hurt worse than the day I actually came down with the flu.
— when they tell you it takes a week or more to feel better, they aren’t kidding.  It takes a week.  And with RA tossed into the equation, the absolute exhaustion and continued run down feeling hangs on even longer.

If you have a compromised immune system… get the flu shot.  The more variables you can take out of your health equation, the better your chances are of getting through the season without coming down with something that could land your butt in the hospital (or worse).

And… it’s time to get on with my day.  I hope I’m wrong about what is going to hit the fan today with everyone out of the office… but… for now, I’m going to try to get done what I can while I can.

I hope you all had the Merriest of Christmases.

30 Day Chronic Illness Challenge… Day 3… How did I get my diagnosis…

069I knew I couldn’t make it on consecutive days… but this morning is beautiful.  I’m sitting on the porch in the fog and drizzle with a fire going in the chiminea and it’s perfect!!! The wet in the wood is making the fire pop and crackle.  The morning music is astounding to me today.

Okay… so… I probably ought to have read ahead a little.  I guess I kind of answered this one a little.  But… I guess I could answer it a whole lot deeper if I try…

So… I had been hurting for a long time.  My hands… the front half of my feet… my knees off and on… and then the knuckle bump came.  (Nodule… I’m one of the “lucky” 20% who get nodules) and I got scared.  So I went to my PCP and asked.  It took a couple days to see her… it took 20 minutes after the appointment to get into the lab to get the ordered blood work done (She didn’t tell me what she was looking for) and two more days to get the results back (in a phone call from the PA).

That was the official diagnosis.  My Rheumatoid factor was WAY WAY high.

I got sent to the rheumatologist who looked at my hands and feet and said… you have been active for a while.  She sent me for x-rays… which showed I had been active for at least 18 months probably more… and that I already had joint damage.

I “should have come in sooner”

okay… 20-20 hindsight.  woohoo…

But… yeah… that was my diagnosis story.

Nothing overly glamorous.  I would probably have a much more long and convoluted story if I had gone when I started to hurt rather than just chalking it up to my imagination or writing too much or whatever.  I might have had a longer story, a bigger fight, a different reality today.  But I waited long enough that damage was done and there was no denying my reality.  :/

The other co-dependent conditions… those were diagnosed as I went, in the dr’s office.  It was kind of an evolution…

30 day chronic illness challenge… Day 2: How have these illnesses affected your life?

my handsI think it’s kind of weird… today’s prompt… how has it changed my life… I’ve thought about this an awful lot…

I was diagnosed with “forever” stuff just a couple months before my daughter was diagnosed (at 15) with epilepsy.  I had made it far enough through my learning to cope with the idea that I had something that would impact my life for the rest of my life that I was able to REALLY be there for my daughter when she needed someone who understood.  After having dealt with people doubting my actually having things wrong with me my whole life and wanting attention it means that I knew how she was feeling having people doubt her.  Having found out that I’m not crazy and my body really is fighting itself, it meant that, when she started to complain about pain in her back and stomach and she would pale and throw up, I fought with doctors to find out what is wrong.  It means that today she still copes with health issues but it also means that she has found the people who can help her.

It meant that I could recognize, in my son, the signs of sjogrens.  I had a rheumatologist who would listen.  She wasn’t as aggressive in treating him as i wish she had been, but she listened and didn’t say he was too young to be dealing with it.  It means that he’s now fighting his fight and I can help him.

For me… it means I have slowed down.  I have started to think more about my mortality and trying to take a little better care of myself.  It means that I take the opportunity to have an adventure when an adventure presents itself.  It means that I try very hard to make the memories while I can because you never know what will sneak up on you and impact your life.   And I try very hard to help anyone I can to understand this.  Not just understand but to UNDERSTAND.

It means that I think very hard about drinking a can of pop that I haven’t wiped off.
It means that every single time I push the elevator button (especially the buttons where EVERYONE goes… the first floor lobby… the cafeteria floor…) I stop and think and try to push the button with anything that I can that I can either disinfect later or that I will throw away when I get off the elevator.
It means that I think twice about buying a glass of lemonade from one of the kids down the street at their lemonade stand… I think twice… and then I buy it and drink it and make a big fuss anyway… because there are some things that are just worth the risk of an infection, and the looks on their faces and knowing that they will probably remember that they can succeed at lemonade stand are worth it.
It means that I wear fingerless gloves what seems like all the time.
It means that once a week I get a shot in my stomach and have a headache the next day and I get an infusion for 30 minutes once a month.
It means I have very thin hair because methotrexate has caused a significant amount of it to fall out (it’s a chemotherapy drug after all).
It means that I have to think before I do things.  I take into account how much my hands are hurting (about a 7 this morning for some reason) before I pick out the cloths I’m going to wear for the day.  I may have to put on a couple pairs of shoes before I find the pair that doesn’t make my feet hurt worse because they are floofier than normal.  I carry pills and gel with me wherever I go so, if it gets bad, I can fight back.
it means I get tired far easier than I should and when I’m exhausted I hurt almost logarithmically more than when I’m not feeling tired and stressed.
It means I wash my hands about fifty times a day and I sing happy birthday in my head twice every time I wash my hands… and I invest an incredible amount of money on hand cream (and I get to enjoy the smell of hand cream seasonally!)
I have to think more about insurance benefits than I ever dreamed I would ever have to.
I treasure skype calls more than I ever dreamed possible.
I’m way less apt to tolerate bullshit.  I don’t have the time or energy for passive aggressive garbage or for someone who has nothing better to do than to dump on me.

What does it mean to me?  How has it affected my life?  It means that I have a whole new normal.   I’ve learned to treasure people far more than things.  I’ve learned to be gentle with myself whenever I can.  I’ve learned to use my phone as a computer and a camera so I don’t have to carry any more than absolutely necessary (good thing it is about ten times more powerful and versatile than my first computer was) and I am drooling over the Samsung Note 4… I really REALLY wish I were closer to my upgrade date for my phone… I rely so much on technology every day… I become fixated on it.

How has it changed my life.  Some for the better… some not so much.  But it is certainly nothing like it was before.