Tuesday, November 27, 2012

i have RA.

there. i said it.

i have RA.

what's RA, you ask? it's medical abbreviation for Rheumatoid Arthritis.

most of my close friends know this, some of my family knows this, and those that follow my updates on facebook may have caught the mention of it, especially over the past several months as i've been getting infusions of Remicade to battle this disease process.

of course, those of you who have been here to the blog for some time know i've been dealing with chronic pain for many years now. you might even know that they suspected RA after some bloodwork and x-rays were done during a second opinion appointment i had scheduled before committing fully to having a 3-level spinal fusion surgery.

well, they suspect no more. it's official. (has been for a year now)

to be honest, it feels weird that i've always been so willing to talk about medical struggles in hopes to help someone else through. because i really do believe that we are given situations in life to live through them, learn from them, and then share the victories in them--even though sometimes those victories might be hard to find. i can't tell you how many times i've been able to help another mom going through sensory struggles with their child or help them deal with a child with allergies, ear infections, childhood surgeries, etc. makes our experience and struggles worth it knowing we can make someone else's struggle easier to navigate.

but this? it's kinda been the elephant in the room every time i sit down to blog. you may have noticed that my blogging took a huge shift this year as i found myself only blogging about the creative side of my life, holding everything else back. why? i'm not sure exactly. thinking about it now though, i'm pretty sure it's because i've been guarding my spoons closely...and my emotions.

yes, those spoons. the spoons talked about in the essay "The Spoon Theory."

well, guarding spoons AND freaking out.

i wake up in pain, i wake up with stiffness and sometimes i wake up not even able to get out of bed without downing a fistful of medicines first and waiting for them to kick in. so i've guarded my time and energy *ahem* spoon expediture very, very closely this year and because i'm a busy mom who also works part-time outside the home AND freelances full-time from within the home, well, blogging just kinda fell to the bottom of the 'must accomplish' list.

so why am i freaking out along with guarding spoons? well. you see, i'm quite proficient in the use of google to help me find information and have always used it to feed my inquisitive mind....except for researching about rheumatoid arthritis. for some reason, i thought burying my head in the sand would make it all go away. ha. let me tell you.....it doesn't quite work that way. (uh, duh, tania)

so, one night, while battling insomnia, instead of looking for information to educate myself on RA (booooooring), i decided to try to find other bloggers, blogging about RA. i was looking for someone to give me humor through the pain. someone to help me know that i'm not the only thirty-something dealing with this level of pain day in and day out.

and i found that. i found double...no, triple that!

i quickly bookmarked them on my kindle and spent the next week reading, and laughing, and crying over entry after entry. these people know exactly how i live and they articulate it so very clearly. awesomesauce.

that's until i realized that two of them hadn't updated in some time. somehow i missed that detail when i first discovered their blogs. it didn't take many clicks through other blogs in the RA community of sufferers to realize why.

complications of RA had taken their life. *insert holy freak-out moments here*

the reality of the disease hit me like a ton of bricks. ever since my mom died unexpectedly at age 50 it's been a sometimes crippling fear of mine.....dying young, that is. anywho. it was then that i got angry at anything and everything. every day i'd tell myself to pull my crap together and add the smile and just keep plugging along.

ever heard the phrase "fake it, until you make it?"  oh, let me tell you. i got good at faking it. real good.

i didn't even let on to my discovery turned disappointment to friends or family, but it didn't feel right to be hiding something that was affecting me so very deeply. so i confessed my heartache to them. explaining how "i am just having a hard time dealing with daily chronic pain and being only 35 years old but feeling like i'm 65. it's ripping me apart leaving a big gaping hole in my soul and affecting every part of my life. depressing, discouraging, blah, blah, blah."

i spent the next several months avoiding blogs about RA altogether, but still can't bring myself to delete them from my reader. someday soon, i'll need that humor again.

anywho. all that to say. this disease is NOT who i am. BUT, it's made me into somebody i don't even recognize somedays.

the reality is, it's my 'new normal'. it's a chronic condition where i know my limitations, but my brain just hasn't caught the memo yet and i often get frustrated with myself because of those limitations. hello, brain. pick up the pace and join me, would ya?

honestly, i just keep teeter-tottering between anger/self-hate/denial and acceptance.

i have bad days. whether that be emotionally or physically.

and that's all it is....just a bad day. i'm learning to realize that a bad day doesn't make me a bad person.

i've struggled with letting myself be vulnerable through this disease. i'm highly aware that there are many eyes watching me and i wouldn't want my shortcomings with this crutch in my life to taint anyone's perception of who i am and what i can and can't do because of my disability.  but i also realize that i am not my own savior and God's grace is a beautiful thing, whether the world decides to bestow grace on me or not.

some days, balancing all my responsibilities feels like i'm trying to balance on a unicycle, peddling with only one foot, while holding a towering stack of fine-china on my head. somehow, it all gets done---sometimes with more pain (and medication) than others. oftentimes with my husband picking up more of the slack than others.  (he's my superhero, always saving the day.)

i'm not ready to give up or give in to grip this disease currently has on my body. if there is one thing that i am, it's STUBBORN...and determined.

like i said, i used to talk a lot about my pain, but have just felt it best to be silent lately. but, as the flares get more intense and the medication changes continue to happen, it's becoming the norm in my life and is making itself clear that it isn't going anywhere any time soon so i might as well start talking about it and letting others see the beauty that can come out of a pile of rubbish.

truth is...i want to blog again, uninhibited by this thing that never got talked about, ya know.

if you've made it this far, bless your heart!  thank you for reading. thank you for encouraging me. thank you for the messages checking on me. and thank you for your prayers.
(painfully swollen RA hands)

i know, that i know, that i know this could be SO very much worse.
  • yes i live in pain all day every day, BUT i can still get out of bed every day.
  • yes the joints in my hands swell up like balloons, BUT i can still use them to make a living.
  • yes i have to use a handicap parking sticker to make shopping trips a little easier, BUT i can still drive myself and shop without a mobility device. 
  • yes, crafting isn't as easy as it used to be, BUT i can still craft. (so very thankful for that!)
  • yes, it feels like my life has taken an unexpected detour, BUT i'm not on permanently disability.
i could go on for days about how much worse i could be, but that doesn't make the reality of the struggle easier.

anywho. many of you that have known about my infusions have offered prayers and entertainment during those times i was sitting through hours of treatment.  i appreciate that. 


after 7 infusions with no problems, i suddenly starting having infusion reactions the last two times i was infused with Remicade, so it's no longer an option. i'm super disapointed because it was giving me my life back in so many ways. so tomorrow's hurdle, when i meet with the Rheumatologist, is to discuss alternative options....primarily to decide between Orencia (infusions) and Humira (injections).

phew.
now that i got all that off my chest..........let the mixture of everyday life blogging and creative blogging resume! :)

11 comments:

  1. Haven't caught up with you in a little while - just wanted to say "hi" and send some hugs your way. Knowing you as I do this must be utterly frustrating. Hope the new meds work. Thinking of you. - Kimmers

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  2. Oh, Tania, I just want to give you a big hug. Hope you will find something that works and makes your life a little easier!

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  3. I am glad you at least have answers now, but wish things were easier for you. Hugs to you.

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  4. I am glad you at least have answers now, but wish things were easier for you. Hugs to you.

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  5. Tania, I'm really proud of you for speaking out. Like you said you never know who YOU will inspire and help. Plus, I'm sure that talking about it will help you deal with it as well. I have always admired how honest and real you are in your blogs and in my interactions with you. You have so much strength and talents that are amazing. Everyone has bad days and like you said it doesn't mean that they (or YOU) are a bad person. *hugs*
    --Shavaughn

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  6. I am here, sweet friend, to hold your swollen RA hands and for you to lean on me. Thick and thin, remember? Love you bunches and oodles. Hugs.

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  7. I know that we've never met in person but from reading your blog over the years I feel like I know you. You are such an amazing woman. Your strength is amazing, the fact that while going through all of this you continue to be an amazing mom, the fact that through all this you have kept your sense of humor is amazing, the fact that you're able to work both from home & away from home is amazing. I so admire you. I'm also thankful that you've found a man like Doug to take this journey with. Sending you hugs & wishing you many days with an abundance of spoons.

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  8. What a beautiful person you are! I hope the new treatments work and you feel better soon. I will be praying for you! Thanks for sharing your thougths and your wonderful talent...you are so inspiring! God bless you!

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  9. My wish for you is that you get some relief---hope the treatments work for you.

    for today---I'm sending you a spoon!

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  10. Tania, thank you for sharing your story and opening your heart. You are amazing! I hope this new treatment works for you and that you will have the relief you need to be able to thoroughly enjoy life and all that you want to do. :)

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  11. it does take courage to tell your story but also to live with a chronic illness-i know it well as i have lupus and have had for many, many years; you are a blessing; sorry i haven't visited in such a long time; sometimes life gets in the way;

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thank you for taking time to leave me a comment! i will do my best to leave comments answering any questions you may ask :)

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