Tag Archives: rheumatoid arthritis

Choosing Joy… 99 Walks… Joyful Wanderer… July 4th edition

It’s the 4th of July 2020. I am so over politics. I am so over Covid 19 and its evolving cousins. I’m over the Murder Hornets and the Meth Gators and being scared all the time.

January is the traditional time of “reset”. And in January I decided that my word for 2020 was going to be JOY. And then February happened… then March happened… then April and May and June. I have been fighting so hard to just maintain any vague semblance of sanity and not falling into a pit of depression.

Don’t get me wrong. I’m on year three of my anti-depressants. And there are days when I really want to message my Dr to see if we can’t adjust the dose. It’s not like I have much to be depressed about. Bear on hospice, knowing that the flu probably put him there. Races being cancelled. Fairs and Disney. Movies at the theater being a thing of the past. The world as we know it changing to one where hate and derisiveness are rampant. Realizing just how polarized things really can get. It’s made this Mary Sunshine pretty much a Debbie Downer for a lot of days.

Then I found 99 Walks.

I’m not even sure how I found it on Facebook, to be perfectly honest. It might have been an ad on my feed. I don’t know. I know whatever it was, I saw the shiny thin bracelet that is your reward for making your walking goal every month and I was hooked on the bling. Ask anyone… I have a crap ton of medals hanging in the window of my office at home. Bling is an awesome motivator. And I needed some heavy duty motivation. Three good things every day for months on end wasn’t doing it. Something had to.

So I went and investigated. There is an app for that (go figure). There is a book. There is a central Facebook group. There are spawned off other Facebook groups. Everyone is so incredibly supportive and friendly. It is my respite from the world. It’s not a magic bullet. I still find myself in a pit with nothing to look at but mud walls and worms kind of frequently. But it is helping.

This month the theme is Joyful Wanderer (did I say that yesterday?). I’m taking this month very much to heart. I’m very mindfully walking. I’m stepping up my game. I’m very determined to get my Joyful Wanderer bracelet.

I’m struggling to get back to Choose Joy.

I’m manufacturing ways to try to trick my brain back into some semblance of who I am because I really really miss being me.

Does that make any sense?

So tonight I’m sitting here waiting on French Fries to be finished cooking, nursing a shoulder that has been flairing for about four days now (it usually doesn’t last this long and I’m really not enjoying it). I’m putting my left hand where I need it to be with my right hand so I don’t move the muscles so much in my left shoulder. I’ve been putting Boo Boo Salve on it pretty regularly (it’s awesome stuff… all natural… a friend of my mom’s makes it… https://www.rainbowskytrading.com/) and adding in the Napproxen at night.

Today we went to the zoo again. It’s coming up close to the Asian Lantern Festival and we wanted to see them in the daylight. That, and the Dinosaur experience is open so… yeah.

It was particularly scary to be out and about today. The state isn’t as bad as Florida or Arizona or California right now… but we are double what we were a month ago and it isn’t looking better any time soon. Our county is the second highest number of Covid cases in the state. The mayor of Cleveland made an executive order that everyone has to wear a mask when they are in a public place.

It was good to see, though, that people were actually wearing masks this week at the zoo.

I worked hard today at mindfully spending time with Bear and Squirrel. It was, altogether, a good day. Pictures to treasure. Memories made.

Should we have gone given everything? Probably not. But we were as careful as we could be. Handsitizer. Clorox wipes. Masks and 6 feet apart (even when it pissed people off that I deliberately would not push Bear’s wheelchair past them when it was too close. Bear says he will die sooner if he can never leave the house. I can’t take everything away.

Starting now I will be starting to use curbside pick up.

Am I scared?

Hell yes

But I can do this. I can’t say this is any kind of new normal… but it my current reality and I have to find myself again.

Today was one walk of 2.6 miles pushing the wheelchair and one walk of 1.2 miles. both were mindful and peaceful.

Love and Light

AprilJoy

7/4/2020

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Is this what you see when you see me?

I’ve been sitting here, reading posts on a Facebook group about… do you or don’t you wear a mask? Do you or don’t you believe it’s a pandemic? Do you or don’t you bleat when you walk around all day … Continue reading

Just Like It Was Before…

People are talking about when life can get back to the way it was before. The way it was before Covid-19. The way it was before everyone became aware of all of the things they touch and all of the ways you can spread diseases… any diseases… not just the pandemic one.

Funny… I thought I was super duper careful about what I touched and how I thought about things before. I mean, I’ve had active RA (been classified moderate to severe for what… 12 years?). I have been washing my hands and singing happy birthday twice. I’ve been washing tables off at restaurants. I’ve been “careful”… but I’ve never really, I guess, been CAREFUL.

People talk about how it’s just like the flu. People talk about how mild their symptoms were, they barely knew they had it.

People talk a good game about social distancing… and meet every evening in the driveway within arms length of each other to discuss the day. No gloves, no masks.

The mail man walks up to you to hand you your delivery box… no gloves… no mask… hands it to you… and you have an internal panic attack because… because you were just walking around the house to go inside and you didn’t have your gloves on and you didn’t have your mask on and he just hands it to you. It was in his truck with lord knows what other stuff. He has touched mailboxes and mail and (apparently) other people… and here you are walking around your own yard and should you wear your mask and gloves not out in public but in the semi-privacy of your yard?

Back to normal?

I don’t know if I will ever get back to “normal” if what before was was normal. Covid can live on surfaces 72ish hours (or 14 days depending on whether you are a cruise ship or not…) but the flu can live on surfaces (yeah yeah… depending on surface, humidity, temperature and the phase of the moon and what color underwear you’re wearing blah blah blah) for 48 hours. Two days. Who touched that door handle two days ago? Who pushed that elevator button in the last 2 hours let alone the last 2 days?

Am I a germaphobe? No. I will eat tomatoes off my vines without washing them. I will snuggle my dogs knowing full well they have been rolling in the mud. I will talk to people (eventually… when all of this is over) without the use of technology between us. My house will never be pristine (I have four dogs… I’ll just be glad if I can keep the dust down to a small “Pigpen” cloud most days).

But I will be way more aware of things.

I will probably bag my groceries less by just tossing anything in the bags… I will bag cardboard together, cans together, perishables together. I will leave the cans in my trunk (unless I NEED them sooner) for a few days.

But more…

Normal looked very different in more ways than just that. Normal was running and going and doing and not time for this and no time for that. I love having time. I love being able to do things as a family that we just didn’t find possible before.

Movie night. Game night. Putting jigsaw puzzles together, together. Sitting on foldy chairs in the front yard and talking.

It will be nice to be able to get in the car and drive to the lake. It will be amazing to get in the car and drive to mom’s for a few hours. It will be a hugely special treat to go to the store and walk around and browse rather than just get in and get out (or more… order everything delivered).

Will I ever go to Disney again? My plans are still to run the Goofy in honor of my Goofy. Looking at it now, that may not be before there is a Covid shot I can get about the same time I get my flu shot. Will I look at running in races differently (10000 of your closest friends herded into corrals)… oh yeah. Will I do it? Hell yeah.

I will continue making my own hand sanitizer because I just like mine better than the commercial gel kind. Will I carry some in my car, my purse, my pocket, my backpack, my desk… yeah. And I will use it way more religiously than I ever have before. And I will carry gloves and a mask and my buffs (which I do anyway because well… buff)… yeah, and I will use them.

Life has changed here. Covid-19 situation in the world has changed me in a lot of ways. Some good… some not so much. Monkey butt said, last night, that he thinks some of what I’m doing right now will stick forever… making four thieves vinegar… making citrus cleaner… making citrus enzyme cleaner… coming closer to zero waste. He’s probably right. And I’m enjoying getting back to growing my own herbs and starting my own plants.

Life has changed.

It will be good to get back to not being terrified of the outside world. It will be good to not think judgemental thoughts over what other people do in any situation.

I will take way less for granted.

And I really really hope that life doesn’t actually get back to what normal used to be.

Will it ever get back to “normal” if normal was what it was before? Probably not. At least not for me. There will be a whole new normal. I’m not sure when that normal will be… but there will be a whole new one. And it’s okay.

Love and Light
AprilJoy
4/9/2020

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Stress… change… parties… doctors… and taking a deep breath

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O-Dark-Thirty… listening to iHeart radio on the Echo Dot my boss got me for Christmas. I was kind of looking for a gift card, but I’ve decided I really like this option better. I don’t have to use my phone … Continue reading

Realizing how far you have come

I refuse to tell people that this is what to do… or this is what will work for everyone… because that is a bunch of hooey. Everyone knows that nothing works for everyone and what works for one person simply can not work for others.  It irritates me when other people do it.  I won’t.

That said… this is where I am this morning…

This morning I hit what my PCP suggests ought to be my goal weight. That means I’m about 15 pounds from my actual goal weight.  THAT means I, very soon, need to start going to the stupid Weight Watchers meetings so I can hit goal there and become lifetime.  I still resent the hell out of that little ploy, but it is what it is.  Yay Nestle…

In celebration I drank a cup of coffee with creamer as a morning treat.

Then I got ready for my run.

I started playing Pokemon Go as a way to see if I can do something distracting during my run.  Hatching eggs.  Unfortunately, the app calculates really badly… I can run 2.5 miles and not QUITE accumulate 1k distance in egg hatching.  But steps is steps and they eventually hatch.  I thought maybe that my fanny pack would count the distance better than my flip belt…  Turns out it didn’t… but… in the process… I had to put my fanny pack on.  This is the utility belt I had always used in races.  This is the utility belt I used before I started on my little weight loss adventure… and my little running adventure.  It fit.  The way the strap was… it fit… 6 months ago… it fit.

This morning when I put it on, this is what I found…. When I strapped around me and held the pack side… I could see my feet between my stomach and the bag.

OLYMPUS DIGITAL CAMERA

When I let go of it this is what happened!!!

OLYMPUS DIGITAL CAMERA

I have officially lost enough weight that my fanny pack needed to be VERY much tightened.  I was, suffice it to say, not only SHOCKED, but very pleasantly surprised.

Today, I adjusted my run/walk/run time so that I ran 30 seconds and walked 45 seconds… I did 2.37 miles this morning in just under 30 minutes.

It got me thinking…

When I first started running (2008… 2009… ish time frame) it was right before I was diagnosed with RA.  RIGHT before… I was doing pretty well… but I was no where near as quick or consistent as I am now.

My first several ‘runs’ I did in the middle of the darkness in the morning around our cul de sac.  I would leave our driveway, jog to the next driveway… make it to the end of the street… walk the rest of the way… and fall down into the yard.  I started adding a little distance.  I would go to the next driveway plus one sidewalk square.  Sometimes the next dandelion.  I worked my way using the First Day to 5K pod cast.

I eventually worked my way up to being able to finish about a mile and a half… run walk running… but I was doing it at about a 16 minute mile.

I finished my first half marathon two months after I was diagnosed with raging RA… 37 joints involved… inflammation everywhere…. My hips screamed the last mile.  I almost couldn’t make it into the house from the attached garage.

When I finished my first Disney half marathon 4 years later, I managed to stay ahead of the balloon ladies but not by much.  I half way trained.  My RA was kind of mostly controlled but I had just started on Orencia.  I was still on MTX.

I was determined to finish Disney…. and it was a personal best time for me.  It wasn’t a great time, but I finished it.

I was 218 pounds when we moved to Cleveland.

I refused to do the math on what that meant BMI wise.  I didn’t want to know.

That was 4 years ago.

February I started back walking very fast to train for Disney.

Then I read that for every 10 pounds weight loss you can shave off 20 seconds per minute off of your run time.  I was determined to get to a 14 minute mile so I could half way comfortably finish ahead of the balloon ladies and still get my picture taken coming out of Cinderella’s castle and maybe even with Goofy on the golf course.

So after my PCP told me that WW is the silver bullet and that I should only EVER eat 0 point foods, I got pissed and joined.  I was determined to make it work.

I needed to shave my time.

I needed to get healthier and stronger so I can help Bear as much as I can through everything that is to come. I need to be as strong as I can possibly be.  I need to be healthy enough to support him enough through everything.  It matters.

And here I am at 165 pounds… 15 pounds short of MY 150 pound goal…

The walmart leggings I started out running in stay MOSTLY up but slide down a few times during a 2 to 3 mile run.

People at work who haven’t seen me in a while have started to comment on how much weight I’ve lost.  I kind of look at that sort of in a hard way… I didn’t really think of how heavy I was.  I didn’t think about how I looked to other people.  I didn’t think… Now I think.

I’m down 4 pants sizes.  I’m running in between a medium and large pair of running leggings.

I don’t hurt as bad as I did before.  I don’t hurt as badly when I am nearly to infusion day.  My hands still ache some days and I still am stiff in the mornings but I feel less bad (does less badly equate to better?  I’m not sure).

And I’m starting to think of myself as a runner.

But it’s not all sunshine and roses in my own head.

Men have started to notice me… started to flirt with me.  There was a guy in Pittsburgh when Bear and I were waiting on the Gateway Clipper who bought pop corn and brought it over so I could help him feed the ducks.  It never dawned on me until Bear pointed it out later that he was flirting.  People rarely ever talk to me so flirting isn’t something that ever crosses my mind. My first thought was… I want very much to go back to being invisible and I should stop trying to lose weight.

But I like feeling better.  I like thinking that I might not need to be on some of the “you’re too heavy” drugs that I’ve been on for years.  High BP meds… cholesterol drugs…

So… yeah… it’s been very much a thinking kind of day… a day of how far I’ve come over the years.

Running isn’t for everyone with RA.  Knee damage, ankle damage, feet and toes… it seriously curtails what you can do with working out… but moving is a good thing and I’m convinced that weight watchers (much as I STILL hate trying to find the logic in stuff) and running have made an incredible difference and I know that I really really don’t want to go back to having a BMI of 36.  Goal for me is now a normal BMI… and making sure I’m around to help when Bear needs my help.

And… of course… doing races…

August … Rock n Roll Hall Of Fame 10k

October…. Towpath 10k
Pumpkin run in Akron

November… Made In America in Massillon Ohio half marathon

February…. Disney!!!

 

Love and Light

April

7/13/2018

When People Ask if the Cold Bothers my RA

So, I live in the great white (sometimes white… often for four or so months of the year there is at least the chance of white, and the resulting cold) northeast-ish.

Okay, I live in Ohio.  It’s not like I live in the wilds of Canada or in Alaska but I live in the north east where there is usually the chance for cold starting in late October and running through at least late February.

Yes, I knew it when I moved back north.

Yes, it was deliberate.

Yes, as I sit here in early August dreading my walk to work this morning and dreading more my walk to the car this afternoon after work, I long for the crisp autumn days and the smell of apples and drying leaves.

 

First  RobinNo, cold does not make my RA angry.  If I let my hands get too too cold they are very uncomfortable but, duh, that’s kind of a no brainer.  Everyone’s hands kind of ache if they are too too cold.  Cold makes my Raynauds a little bitchy so I carry hand warmers in cold weather in case I need them.  I buy them in bulk at <insert discount department store or super center here>.

I was told, when we started discussing Aspergers with the shrinks in Texas that if you have met one aspie you have met one aspie.  Aspies tend to have similar traits and experiences but it isn’t cookie cutter.  The same can be said for RA.

This is RA for me.  This is my reality and my experience.  August (hot humid weather) makes my RA a bit more on the bitchy side.  It makes my hands get floofy and it makes my fingers and toes ache.  It makes my jaws swell and leaves me with a headache that reaches from half way down my back between my shoulders, up my neck and stops at the bridge of my nose.

Rocky Days can have their own beauty

I have a jar of Tiger Balm in every backpack, purse and fanny pack I have.  I plunge my hands into cold water and revel in the relief.

This is my RA experience.  This is not to say it is yours. It is not to say it is anyone else’s.  I guess that has been playing in the back of my brain a lot lately.  The differences in how RA manifests, how it reacts to treatment, how it behaves in the body.

Guilty admission… I have gone looking longingly at the Facebook post of a friend after she was told that she can probably count herself as being in remission with RA.  I have to admit I’ve never understood why they call it remission, but that is a doctor thing.  I’m so happy for her that she is with less pain.  I pray that it stays asleep for a long long time for her.

I’ve been talking to someone I used to work with in Texas off and on about her experience with RA.  She has decided that the pain and swelling are just going to be her constant companions.  She is hoping that one of the newer drugs can help her but all of the biologics they have tried with her have not helped at all or if at all not for long.

And here I am, stuck in the middle again.  The biologics work for me.  I’m hitting three weeks between as of today again (looking forward to having to work from home next Wednesday because of my infusion).  I’ve signed up for December’s Santa Hustle and I’m looking forward to walking that half marathon.  I fully believe that, if we don’t have a foot of snow to ‘run’ through it will be a better race than the Presque Isle half a couple weeks ago.  Warm and humid do me in.  My fingers are all still parallel.  My aches are still mostly tolerable.  I’m exhausted by the end of the week, sometimes by the end of the day, but I try hard to remember to save spoons whenever I can.

No, cold does not irritate my RA.  Being looked at and groused at because I know my limits and I need to make alterations (“but you do half marathons”) when I need to irritates me way more than the weather ever irritates my RA.

So, yeah

Don’t let people pigeon hole you. Don’t take shit from anyone and be gentle with yourself.

Love and Light
April
August 3, 2016

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…

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Boye 4 in 1 crochet tool

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Hello!  I don’t usually get this excited about kitchy kind of things (okay, sometimes I do, but this one is so cool I just have to write about it).  I went to WalMart to see if I could find a … 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