Tag Archives: rheumatoid arthritis

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

Posted on September 16, 2014 | 1 comment

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…

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

Posted on September 14, 2014 | 3 comments

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.

 

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30 Day Chronic Illness Challenge… Day 1… My Introduction

Posted on September 13, 2014

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So… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here … Continue reading →

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On Making “one of the top” RA blogs of 2014

Posted on August 23, 2014 | 1 comment

Okay, so I’ve started to try to take myself a little more seriously. Granted, I probably should have done this a WHILE ago. Granted, it’s still probably enough..

But I’m listening to the advice I’m getting and I’m trying…

And this morning, in an admittedly vain attempt to see if what I was doing was making any difference, I googled <I still can’t get it through my head that googled is a verb> a random RA string.  I didn’t try to trick google.  I didn’t want to try to find a way to MAKE it land, somehow, on my page. I just wanted to see.

I googled Rheumatoid Arthritis Blog.  NOT surprisingly Healthline came up because they have a lot of good information on a wide variety of health related subjects.  What DID surprise me was the fact that in their “best of” list for this year, I’m there.  I’m there with the ones to whom I pay homage because of their following and their content.  I never dreamed that I would find myself among the listings.  To be honest, when I went hunting through the listings, I was trying to figure out what other blogs there are out there that I might have missed and how I can try to figure out how to make this more useful.

And there I was.  Nestled in among some that I frequent rather regularly and some that I’m going to start haunting myself.  You can never have too much information, too many different perspectives, or too much support.

I feel kind of lame that it matters to me this morning.  I have never cared an awful lot about popularity contests or about awards in general.  But it matters to me today.  And in a way, I realize, that maybe it means that I’m making a difference.  That maybe because I’m here someone won’t freak as  badly when they get the news… maybe I really can help.

I KNOW this has nothing to do with the attempts to have this quiet little hamlet in the nearly infinite back roads of the internet show up on a few more of the maps without having to dig and dig and dig.  THIS has been there since May.

But it still made me smile, just a little (okay, okay… I think it was probably closer to what was termed a shit eating grin when I was a kid… why anyone would eat shit and grin, is WAY beyond me… but it is the phrase that has always stuck with me).

Kim, at Chasing Normal, keeps prodding me that I need to work harder at making a name for myself, that I help, that I can make a difference.  So… I will keep trying to figure out how to work at that part of it… and I will grin just a little.

Presented by: Healthline

 

Updated: August 23, 2014
Author: Figment of Fitness
Keep the dreams alive

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Santa Hustle Half Marathon: lunacy

Posted on August 22, 2014 | Leave a comment

Okay, so here I am, deciding that I must be crazy.  I must be.  There is no other explanation.

What am I doing?  I’m crocheting a Santa beard in August.  WHY am I working on a Santa beard in August?  Because I’ve fallen in love with a race that I intend to do in December.  The Santa Hustle at Cedar Point.  December… Cedar Point (part of the course is along the beach on Lake Erie)… I have to be crazy.  I should not be this excited about walking as fast as I can for four hours on what could be a lovely day or what could be a freaking cold day with a foot of snow (like last year).  I have to be crazy.

And yet, here I am, working on my beard, getting ridiculously excited about the race.

On the beach

At Lake Erie

in December

Yes, I’ll post pictures when I get more of the outfit completed.
Yes, I swear I will post updates on the training
Yes, I’m hoping that, maybe since school will be out in Texas… MAYBE… Adam almost volunteered already this morning… and he just might yet…

Am I crazy (as I listen to IZ cds and rub on the Tiger Balm in August), probably… but I need to keep proving to myself that I can… that I’m not too lame (literally) to walk a half.  Ever since I was diagnosed in 2009 (wow, I’m closing in on 5 years diagnosed… 7 or 8 with active RA) walking 13.1 miles has been my thing.  And I guess it is going to keep being my thing.

I close my eyes and see Adam walking me in to almost the finish line in Austin… handing me my medal and hugging me the year he had the flu… I see all of them cheering me on across the finish line at Disney… I still don’t understand why I am my kids’ hero, but I really do have to do this.  The compulsion is just there.  And I have to answer the call.

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Socks: a retrospective

Posted on August 21, 2014 | Leave a comment

It’s scary how much time I end up spending thinking about some things since my RA diagnosis. I know that, along with my RA came Raynauds as a secondary condition and that is a huge contributing factor to the fact that my fingers and toes are always cold. But it still strikes me as odd to think so much about socks.

When they clearance the winter stuff and the “spring line” starts to come out at the stores, I always go looking for wool socks. I don’t just wear them in winter. I sometimes wear the pretty socks or the business socks in my drawer, but I’ve fortunately acquired enough wool socks in enough colors that I can rely on them to get me through on days when I know I’m feeling cold. And AC can make my feet and fingers freezing so it is as many days as not.

I recently discovered wool and silk blends and got a couple pairs of them that I absolutely love. They are soft and warm and stay up! Staying up is a problem I always have when I buy the 6 or 8 or 10 packs of athletic socks at WalMart. After a couple washings they start to fall down around my ankles, and they are knee socks or at least over the calf socks. I hate the feeling of them slid down. And that feeling is so not like just buying and wearing ankle socks. It just feels wrong.

This morning I put on the no slip hospital socks that bear got when he had his colonoscopy. They didn’t actually make him put them on and he wasn’t going to bring them home because they are just funky. No slip grippy stuff all the way around and tube socks. They are pukey brown and have an idiot smiley face staring out of two opposing sides. Who thought these up? Because having your feet smiling up at you when you are in the hospital is going to make you feel so much better? But socks are socks and they came home with me. And this morning they are keeping the chilly off my feet.

Who thought up putting registers on the wall to blow on your feet? In the summer, the AC is just too cold on your feet, and in the winter you want to be warm all over not just on the floor. I know I know, hot air rises, but it still feels counter intuitive. I was raised in a house with a coal furnace. Registers go in the floor blowing straight up… all the better to dry your hair in five minutes first thing on a snowy morning!

But I digress…

If you tend to have cold extremities, you know how important it is to find the warm. I love my Injinis toe socks especially in my Vibrams five fingers shoes (Go Hobbit Feet!!!) and the wool toe socks that I bought last fall are still holding up remarkably well. No holes. Still going warm.

I don’t understand why the 6-8-10 pairs that you get at back to school time don’t hold up any better than they do. I mean, I get planned obsolescence, but geeze… it just makes me want to not buy them at all.

I get that socks are a fashion statement and everything.  And I get that companies have to make money.  But I would far and away rather buy something that is going to keep me warm (which I think is what they are supposed to do anyway) and hold up without my having to add in elastic later than to just buy the cutsey or the garbage.

I can’t wait till gloves start showing up at the store (any day now). Since texting has become a big deal for everyone, and the gloves to facilitate have too, I can now use gloves with fingers all day long on my laptop! Technology is starting to catch up with what I’ve needed for years.

I wonder what colors this season brings!

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Finding an Oasis

Posted on August 5, 2014

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So, this morning I’m sitting on some amazingly to DIE for chairs.  I want one for home.  I want several for home.  I don’t know where to get them but I want them.  They are huge round wicker “chairs”… my … Continue reading →

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Guilt and Exhaustion

Posted on July 15, 2014

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I’m currently running on 6 plus weeks since my last orencia infusion.  I’m recalling how much it sucked to be eight weeks without it.  Last night it hit me hard what this time it is feeling like.  I had to … Continue reading →

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Mood Swings

Posted on July 13, 2014 | Leave a comment

IMG_6105So, I’ve been sitting in the growing gloom of morning as the storms creep in feeling very alone and very cut off from everything and everyone in the world.    Given that my dog is at my feet and everyone I live with are where they usually are (squirrel girl asleep on the dining room floor and bear asleep on the basement couch) the feeling is in no way based in reality.

The rain has interrupted the satellite signal so the only sound is the rain on the roof and the windows and the patio and that lends itself to the feeling.

I’ve discovered when I’m aching more the moods are far worse than they are when I’m not.  I am way more short tempered and moody (crying to anger to crying to feeling contrite) and physically exhausted when the pain and stiffness creep up.

It’s a lot like the the storm, the thunder and lighting and rain… the anger, frustration, anger and tears… they come in, sometimes blow through rather quickly, sometimes stay for days.  Eventually it blows through.

And I feel so guilty because of it.  I know it hurts people’s feelings.  I know the way that hurts, too.

I’m looking so much forward to my twice put off infusion on Wednesday to blow out the cobwebs, the aches, and the moodiness.

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The Value in Nothing

Posted on July 5, 2014

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It’s late again (for me).  Later than it should be.  Later than it could be.  And this morning I just don’t care.  I am sitting on the front porch.  My deer friend Eloise (I’ve named her Eloise… the one that … Continue reading →

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