Honey, We're the Big Door Prize
Finding Some Whimsy

Getting Real

Blog-land (like social media, in general) is such a funny place. Carefully curated slices of someone's life: stories we decide to tell, views we decide to share. With pretty pictures, to boot!

I try to be authentic here on my blog. I don't shy away from hard things, but I still curate, y'know? There are plenty of thoughts I keep to myself, stories that I consciously decide not to share. I try to keep most of my pictures . . . pretty.

I guess this is my way of warning you  . . . that shit's gonna get real here for a minute. Not so pretty today.

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You see, I'm in a bit of a . . . stuck place . . . right now. Life has thrown me a curve ball. And after thinking about it for a few weeks, I've decided to put it out there. To share it with you. Not because I'm looking for sympathy (I'm not), but because . . . maybe it will be relevant for you in some way. Maybe it will strike a chord for you, personally. Or maybe it will help you understand someone else better. Or something.

So.

As I mention from time to time, I have RA (rheumatoid arthritis), and have for over 30 years now. It's pretty severe, and has caused me many problems (including my bout with lymphoma) over the years. I don't talk about it much. I try hard to pretend it's not a part of my life, actually. It's been well-controlled through medications, and I tend to grin-and-bear it. I don't want it to be a defining trait of Who I Am. Most people have no idea I have RA, and those who do . . .usually forget. And I like it like that!

But I've been having some trouble with my RA this summer. And right now, I'm in the midst of a full-blown, major RA flare. Not just an oinky-joint or a bit-of-discomfort-for-a-few-days kind of flare . . . but a Big One. The likes of which I haven't experienced for 20 years or so. Why? I won't go into the complicated details of this for you (and, trust me, they are very complicated), but . . . basically, I had to go off my tried-and-true-but-possibly-liver-killing meds for a few weeks to prove that YES! it WAS the meds killing my liver and not something more insidious. But stopping those meds for a couple of weeks? It opened the door for the "RA inflammatory process" to step in and take hold (there's a reason I was taking those meds). And now . . . that "process" doesn't want to let go.

So I'm having some bad days. And some REALLY bad days. But there some good periods thrown in, too, where I can almost live my life normally. (RA is a Very Weird Disease.) I've re-started the liver-killing meds (yeah I know), and I'm starting some steroids that might help. I'm also looking to "re-start" another longer-term medication that I used to take but haven't during the pandemic (because it wipes out your immune system and . . . well . . . that's something I decided to hold onto during these covid times). Like I said, this is pretty complicated, and it gets overwhelming sometimes.

So these days, I'm in pain, a little depressed, very irritable, frustrated, exhausted, and Sick of This Shit.
But also Dealing With It. 

I will get through this. 
I'm not just sitting here, waiting for a solution to drop into my lap. I'm actively pursuing options and gathering a team to help me figure things out for the future. (Because obviously the liver-killing option is not good for the long term, and covid isn't going to magically disappear.)

So . . .  I might just blog a little bit more (but not all the time) (don't worry) about this not-so-pretty slice of my life.

Because right now?
I decided to share.

Comments

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Valerie

I'm sorry that you are going through this, especially with all the other sh!t in the world going on.
Thank you for your candor.
Sending all the mojo your way....

Bonny

We do tend to curate, and I'm not exactly sure why. We all have some sort of painful shit in our lives, and maybe we should share more often. My Swedish grandmother used to say "glädje som delas fördubblas, sorg halveras" (joy shared is doubled, sorrow halved), and I hope this is true for you. RA and other autoimmune diseases are not for the weak, and especially during a pandemic. I wish you good health, lessening pain, and that you are able to keep moving.

Chloe

I went through a period of my life where I actually thought I had RA (but didn’t, long story), so I am somewhat aware of the extreme symptoms and psychological effects this condition can have - and so I admire your courage and determination to not let it define your life. But sometimes all you can do is just exist till it gets better. I hope sharing helps somewhat to alleviate those symptoms because holding it in all the time can’t be good either. I hope for you this “bad patch” is over soon without additional complications And bravo to you for living a very full and active life despite all the challenges. I send strong wishes (don’t pray much these days) and hopes that it will be over soon. I think of you as a friend, Kym, and hate to see you going through this. Chloe

Geri

Thanks for sharing Kym. I certainly hope that your team will come up with a solution that will provide some easing of your symptoms. I cannot image the pain and discomfort you must feel. I can only whisper healing thoughts your way.

Mary

I think Geri's comment sums it all up.

Thanks, Kym, for sharing realness.

Margene

I am one of your friend that knew but FORGOT! When friends (and I have several with RA) are active and willing to go, go, go and have the appearance of health even in a flare, it's hard to remember they need a little different love and care from you. Awareness from you! From across the miles I send you strength and hope that your team can find the cocktail that works for you. Meds are such a balancing act and sometimes it's just very difficult to find the answers (at least not as fast as we want). Please, please take care of yourself and please, please let me if you need a shoulder or a virtual hug.

Caffeine Girl

Thanks for being real, Kym. I truly believe that writing about our challenges and getting support for them are two of the best ways to get support. I also think any community is stronger when there is honesty.
I'm not sure I really understand RA, but I know enough to be very grateful that it is not one of my challenges. It is clearly one of those conditions that can affect every aspect of a person's life and demands constant vigilance.
And, of course, this is a terrible time for an autoimmune disease to flare up!
You've done an amazing job of putting one step in front of another and continuing to take life one day at a time. You've already developed the strategies to get through this. I am so sorry that you have to dust those off and use them -- but I know you will get through this!

Debbie

Thank you for sharing, Kym. I hope your health care team will work out a plan that is just right for you and I hope that your current flare will ease up and give you some pain relief. I send you my care and encouragement.

Bridget

I can certainly appreciate your feelings right now. And the frustration as well. I'm glad that you shared this, because I for one like to know that I am not the only person whose life is not perfect, and who is often just tired of things. I was telling a co-worker the other day that even though intellectually I know how lucky I am, I'm really tired of everything being such an effort. And chronic illness is that, even in the good times.

Take care.

Carolyn

Kym, from the moment I spotted you on Ravelry, with that gorgeous shawl, I felt some sort of...energy. Whatever It is--it emanates from you. While I can only speak for myself, I have a hunch that plenty of others--here and there and everywhere--have that same response to you. Which makes us really damn lucky. Your way of being in a space just sort of...attracts...sets a tone...draws others in...regardless of topic or content or what have you.
I don't really know where this is going--at all--except to say I want to send some of that good energy back your way. (In fact, I was JUST thinking of it yesterday, about the thoughtful email you sent me when Troy's job hung in the balance.)
May love + science work in your favor, always.

Vicki

Oh, I'm sorry to hear this, Kym. Chronic/fluctuating pain is a b*tch. I have confidence that y'all will find a combo of things that works for you!!

Vera

I am sorry to read this Kym but certainly appreciate your honesty. As others have said, I think it helps to put the "not so nice" stuff out there to share...sort of lessens a burden to a degree. And, good to not hold it all in (that cannot be good...but I tend to do the same). Sending you ALL the healing juju and praying that the right combination can be found for you quickly. You are strong, intelligent and thoughtful and that has got to help.

Mary

oh Kym, that sucks. Thank you for sharing. I always appreciate honesty over pretty pictures. I'm cheering you on and in awe of how you can manage your RA so that some folks (me!) don't even know about it. Sending all the good vibes your way!

kim in oregon

Sitting with you as long as you need.

Patty

I am so sorry to hear this. My co- worker’s daughter is walking the RA possibly-killing-the-walk right now and it is so difficult. I am sure you know that I am sending all of the get-this-resolved juju your way and the understanding that at times you just want to jump up and down and scream! You’ve got this (damn you do) and we love your honesty and ability to help us see that we’ve all got fights to fight. xoxo

Dee

Well, as I said to someone about stuff going on in my life ..............Oh yay! Another cow-patty in the shit show that is my life.

Sorry YOU got another cow-patty too. RA sucks. I hope the flare goes on the wane soon.

Helen Mathey-Horn

Love to you. Love your posts, but post when you can.

Sarah

I appreciate your openness and honesty, Kym, and though I know you weren't looking for sympathy, please know that I'm thinking of you and sending whatever good mojo I can your way. I've also dealt with a chronic condition for much of my life (though it wasn't diagnosed until a few years ago) and know how it can completely take over your life. But I also know that you have a lot of healthy habits and practices and that you'll get through this, just as you've gotten through past health challenges, and I know you won't let this beat you.

Kim

Kym, thank you for putting yourself out there with the reality of your RA challenges. I hope that you turn a corner soon and achieve a liveable working rhythm.
Sometimes it does seem like everyone on social media has a better reality than one’s own. Scratch that, pretty posts make me feel exhausted and defeated sometimes since I can’t help but compare my actual life to their curated ones.
Every year seems to bring new, unanticipated changes in our world as we age, my coping skills are stretched and I want to stop existing and start enjoying life again. I hope this note finds you feeling good about being vulnerable with your followers and feeling heartened by the sisterhood we all feel with you.
Take care, Kym, and kick RA’s ass.
Your friend in Canada,
Kim

kat

I think the best thing about sharing hard things, is not having to carry the burden alone. I agree with Bonny's wise grandmother... sharing the load unburdens the loaded.

There are some social media places that you just know are "fake" because no one has a picture perfect life. This is one place that has never, ever been one of those spots. Your real-ness is inviting, and so comforting. I am so wishing that you will feel all of us gently around you... each picking up a part of your burden and leaving you strength to continue your journey in return.

I am hoping beyond hope that they will soon sort out the meds that will make your RA head back to the shadows. And that some kind of miracle happens that causes the unvaccinated to all go get vaccinated so that those who can't or those who have compromised immune systems can feel a bit safer.

Sending you all my love. XO

Anne

Kym-
Thank you for reminding us that we can, and should, lean on each other.
I will be thinking of you.

Carole

Hey, friend. I didn't know you were struggling with all of this right now. I'm glad you decided to open up about it because I think it's good to share the lousy stuff as well as the happy stuff. Putting it "out there" gives the universe an opportunity to help, I think. I'll add that I'm so sorry you're in pain and having to make some really hard choices about how to manage that. I'm here for you if you need me. XOXO

Karel

I tend to stoicism myself, but it can be overrated and so am glad you lowered your shield for a spell. It's difficult to learn, after finally meeting you face-to-face, that you are bearing so much. Even after spending several hours with you on Friday, I had no clue. I echo what Carolyn wrote, about "your way of being in a space." With her (and the rest of your admirers) I "send some of that good energy back" to you. If you can use a distraction, let me know: my travel knitting is always packed and ready. If you need to lick your wounds in private, I'll be here when you're ready to venture out. And of course, if you need anything... well, we know each other now. Isn't that great? xox

Pam

Well shoot! I'm sorry this is happening to you - at all but especially right now, when the world is a little more dangerous anyway. Thanks for your openness. I hope things are soon more under control. And in the meantime, friends near and far are rooting for you.

Jane

Oh Kym. I sure hope the docs can help you sort this out. Coming at this time with all the other awful news, this must feel overwhelming at times. I'm sorry. I'm also not sure I understand all you are going through. It sounds complicated. Thank you for being open and honest. I'm holding a good thought for you and sending you hugs. Take good care. Write what you want, when you want.

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