Category Archives: rheumatoid arthritis

But I Caaaaaaaan’t

I’ve been haunting a lot of websites lately trying to figure out 1. just how weird I am and 2. how to get to be a better me. I guess maybe that makes me even weirder but hey.

I’ve been reading a lot about can’t.

And I’ve been getting irritated.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”  ~Albert Einstein

Girls can’t

Boys can’t

fat people can’t

skinny people can’t

people with RA can’t

people over can’t

I heard a lot when I was growing up all of the things that I was told I can’t.  I worked really hard to prove out that some of those were wrong.  Some stick in the back of my head and I fight the words EVERY SINGLE DAY.

There are a lot of things I know I can’t do.  I can’t “win” a half marathon (marathon) but that is because I never loved running when I was in a position to train that hard for it.  I suppose if I really REALLY trained now, in several years I might actually have a shot at at least winning my age group. I’m not sure if I care that much, and that is on ME.  It isn’t that I can’t.  It’s that I won’t… that I choose not to.

I can’t do a full marathon.  NOT because I can’t (believe me I have been thinking very seriously about training for one… and maybe some day) but because I can’t justify in my head putting in that much work to git-er-done.  I am not incapable.  I choose to not put my effort there. For now.

I got all caught up in my head that I couldn’t lose weight.  I resented being told by the doctor that WW was the magic bullet and that all I needed to do was follow their sheeple and I would magically be perfect. “THE PLAN” works.  It completely works if you work the plan.  I just went out and bought (thank you for the Salvation Army 50% off clothes sale for Memorial Day) pants that are 2 sizes smaller than I have worn in YEARS and they fit (some actually are already baggy).  It works.  I’m kind of scared that when I reach goal that I won’t be able to maintain because the math really doesn’t work in my head still.  Anyone can lose weight if they are running 2 – 10 miles a day and eating 900 calories.  The trick is to be able to maintain a healthy weight and a healthy lifestyle.  I’m trying to learn.

I thought, I can’t.  But I have, I am.

I was registered for a half marathon when I was diagnosed with RA. I immediately went out and googled stuff (duh… and DOH) and what I read suggested that I can’t do half marathons (or 10ks or whatever).  My rheumy suggested that I probably ought not (at least then) run.  I was not controlled in my disease.  I am still only marginally controlled… If I insisted on this, I should train to walk very fast.  So I did.

Only a couple months after diagnosis, and just a month (maybe 6 weeks) after starting methotrexate, I finished my first half.  I almost quit.  Thanks to Monkey Butt walking out to walk me in I didn’t.  But I almost did.  My hips were screaming about an 18 on a scale of 1 to 10 and it was all I could do to move.  But I was stubborn and I was determined and I did it.

And I did it again.

And again.

This morning I have been reading.

One thing I read was the Cleveland Marathon Facebook page and I realized that my PR was even better than it should have been because the course was .18 miles longer than it was supposed to be (so I ‘ran’ 13.28 instead of 13.1 and I still shaved 19 minutes off my time).  That was surprising.  People are SOOOOO upset because there is a decent sized hill in about the middle of the half marathon course and it is a smallish brute.  Austin’s was way bigger.  And Cleveland had awesome signs to entertain you going up the hill.

Did you ever stop and think that a lot of life is kind of like a marathon?  There are hills.  There is pain.  You get tired.  There is rain and heat and utter exhaustion.  But you keep going.  You might bitch later.  You might whine that you can’t can’t can’t can’t can’t… but you can.  And you do.

Don’t get me wrong (and I know I could take a LOT of grief for the misunderstanding here)… not everyone is cut out to run.  Not everyone wants to, cares to, thinks about, running races (or running at all).  There are people with RA that are way more debilitated than I am.  There are people who’s bodies will not allow them to get out of bed.  There are people (I love you Bear) who struggle every day and finally take a deep breath and admit that they need assistive devices.  But we all have our challenges. There is no shame in needing help.  There should be no judgement in running our own races and learning what we need to learn from them.

And in trying to help each other up the hills.

If I was an elite runner (or an elite anything), I probably would have a different mindset.  I would be determined to win at all costs.  But for me, the races are mostly just life.  We are all in it together.  We are all running our own races, and we are running side by side up the hills, through the rain.  Sometimes we fall and need help getting up.  Sometimes we just do what we need to do and push through it all alone.

But you can’t give up.

You don’t know who is watching you.

You can sit down on the curb sometimes and cry until you can’t cry any more, but in the end you just pick yourself up, wipe the dirt off your butt, and keep plodding along.

Some time around mile 9 or 10 (or 19 or 20 as I hear tell) you start to feel so very very alone.  Sometimes alone is accurate.  And that’s okay too.

And when the course gets rough and the hills get long and steep, it’s okay to stop and catch your breath… rest a bit… and keep on plodding on.

 

Love and Light
April
6/2/2018

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On CBD and Achey Days

Cannabidiol (CBD) has been studied as a way to help with pain and inflammation of RA.  I know that it helps in other things as well, like my mom’s fibro and sometimes when she has chest discomfort from a cold.  I won’t pretend that I had my doubts about how much it could help the RA pain.  I’m nothing if not a cautious convert.

I also have to admit that it takes a lot to make me think twice about using Tiger Balm when I start to get achey.

But… When I won one of Vicki’s contests at Rainbow Sky, the prize I opted for was XXX special BooBoo Salve from Vicki’s Rainbow Sky Trading Company.  Rainbow Sky has some of the most interesting things.  I’ve been a long time fan of her BooBoo oil and salve.  It helps my headaches.  It helps when I have scrapes, bug bites and poison ivy.  She is a close family friend and when I won (one of the winners) one of her contests, she offered to make me up some special booboo salve.  She mixed some CBD oil in with the other oils.  It smells a lot like the regular booboo oil, which is a mixture of 43 (44 with my current mixture) essential oils in an all natural base.  It works really well in its “regular” formulation but the addition of the CBD really gives it some amazing kick.  On days when my back aches, days when my wrist of my fingers scream, it helps.

Only down side to BooBoo oil/salve is that it has a scent.  I like the scent, but since Bear has been having symptoms (and now diagnosis of) IPF, it triggers (so does my Tiger Balm) a spate of coughing.  It’s not so bad when I’m in a different part of the house or not in the same place as he is, but if I’m in the car with him, or in the same room with him, it triggers him pretty badly.  I know that a lot of people have a problem with heavy scents, even if they aren’t “chemical” based (and hey, it’s not like H2O isn’t a chemical or anything… so… yeah).  I’m becoming more and more aware of that sensitivity as time goes on… I try to be gentle with my fellow humans, as much as I can.

There have been times when I have really wanted to put on something to take the edge off.  Booboo oil… or salve… Tiger Balm… SOMETHING… but… I don’t want to cause more pain than I have to.  I have been where I know I would trigger him if I had used anything scented and I have gone without until I could be somewhere where it would dissipate before I was back near him.  The scent isn’t that strong, and honestly I like it as much as I like the Tiger Balm smell, but easing his breathing is paramount in my mind.

About the same time as Vicki was making me my special concoction, I got a sidebar from someone at Outch and they pointed out that Outch Ointment is a CBD and Chinese herb infused topical. And that CBD is widely reported to improve the quality of life of those suffering from RA (as well as many other conditions).  It provides a safe, natural alternative to other methods used for chronic pain relief.

I was chagrined to admit that I had never really researched CBD.  I had never never tried it.  I knew it helped (not really topically,  but orally) with Epilepsy and with chronic pain.  I have professed to be as holistic as I can be and yet I never tried this?

I looked up Outch.  It was started by Brian Bowen, a traditional Chinese medicine herbalist and nationally certified acupuncturist” from Colorado.  I read their “about us” pages and really liked what I read on The Philosophy page.  He kind of reminds me of a doctor version of Vicki.

 So, I let the representative from Outch send me a free sample of Outch.  I got a tube of the roll-on (adds camphor and menthol to the ointment version) and a pocket sized jar of the ointment.  The Outch ointment combines the ease of pain with the added benefit of having absolutely no scent.  I’m not sure how that works or how they managed it, but I can use the ointment in the car or sitting beside bear in the living room without triggering a coughing spell.

Today, I ordered a 1.7 oz jar of the ointment from Outch so I can routinely refill the little jar that came in the mail as the sample and I can just toss it in my bag and use it whenever I am around people.  I will be saving up a bit of extra money over the next month or so to send to Vicki to make me up another batch of her BooBoo salve with the CBD in it, too.  I’ll be saving for a bottle of the roll-on Outch, too because I really like the cool tingle on my back when I rub it into the muscle spasms.

I hadn’t done the research.

I had never tried CBD.

I am a convert.

Am I 100% convinced that it will cure RA?  No, I’m not convinced.  Am I certain that it helps when I ache?  Yes.  Even on the steamy, too warm, too humid days we have been having in up-state Ohio recently. EVEN when I’ve been typing too much or crocheting too much or pushing too hard mowing the grass… it helps take the pain away without resorting to pills.

Haven’t tried CBD?  I highly recommend a trial.  You can get straight CBD from Vicki to try or one of the mixes that these to places have.  What can it hurt?  You might be out a couple cups of coffee from either shop, but if it helps, it’s well worth it.

 

Love and Light
April

7/22/17

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My RA eyes are getting really dry

Well, while this isn’t new… it is definitely very irritating (in a lot of ways).

For the last several years it has been a given that I have dry eyes and dry mouth  (sjogrens).  It’s kind of getting old fast.  But the newest development has really started to get to me.

I have started to have dry crusty discharge at the corners of my eyes.  Yeah, I know everyone does now and then, especially when you wake up in the morning.  Mine has gotten to be like that only fifty times worse.  My eyes are like that almost all the time and a few times it has gotten bad enough that when I tried to clean my eyes it has scratched my lower eye lid.

I use Refresh lubricating eye drops several times a day but the relief is only temporary and then it keeps coming back.

I’m going to have to break down and 1. rat myself out to my rheumy on Monday when I go in for my infusion and 2. go see my eye doctor to see what she has to say about the new development.  So far, I think that the epithelial basement membrane distrophy hasn’t gotten any worse but only the eye doctor can verify that.

When my hands/feet/hips/shoulders/knees hurt it’s annoying and they hurt but when it comes to my eyes I really start to worry.  The fear, I know, is needless… but… it’s real and it’s there none the less.

Anyone else have this interesting development?  I have been doing considerable reading but it is still kind of new and concerning.

 

April
11/26/16

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

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