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May 06, 2009

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Millicent

It's understandable, & you're entitled to have these moments of sadness. Life isn't fair--no way, no how. Sleep well & as Scarlet said, "After all, tomorrow is another day."

trisaratops

Been there, done that. Even the best of us get frustrated by this disease's constant stream of reminders that no matter how in control you are, you're never really in control.

Kathryn

We can handle grief better when we're feeling well.

Am

:( i know exactly how ya feel. been there. it gets better tho :)

Elana en Mass

Thanks for sharing this brief moment in time, as it does offer up a reminder of the helplessness I know I sometimes feel with this friggin' disease. Letting 'it' go is healthy and normal- holding 'it' in, and thereby letting RA take hold, isn't.

Beautifully written, Sara.

RA Guy

My emotional roller coaster of this past week is finally slowing down, and I once again feel I can breathe. The moments like the one you describe are hard to have to go through continually, but I'm beginning to think that each emotional "relapse" actually gets us one step closer to accepting our lives with RA. Thank you for sharing.

sara

M-Thanks, Mom.

Trisaratops-sooo true. Thanks for your comforting words.

Kathryn- what a profoundly wise point. I hadn't thought about that!

AM-thanks....I need to hear that!

Elana-thanks so much. It really helps to know I'm not the only one feeling this way.

RA Guy- I think you may be right...thanks, and glad to hear that your emotions are also calming down a bit! I know you are in a rough period.

Christine

So good to know that others have the same feelings of resentment and rebellion against the truth of living with RA! Reading your entry, Sara, I felt like I was reading my own words and thoughts to a T. I was diagnosed at 21, now I'm 30 and still feeling a little angry. If you would allow me to offer a small piece of advice: don't stop taking your meds just because you feel alright, and stick to the required dosage. I have messed with this in the past and paid the price: I have no cartilage in my left shoulder and some of my fingers are deformed. It's very important to take care of yourself, and listen to what your body is telling you. Now that I'm married, I want to think about getting pregnant, but I can't quit my meds cold turkey. If anyone knows anyone who has RA and was pregnant, I would love to hear their experience.

BarkingDogShoes

I haven't had a good cry about this disease for a long time...until I read your entry tonight. Here you are 10 years my junior and diagnosed at about the same age I was. I remember those early days with RA, my pain was insidious and intense. I would cry myself to sleep many nights only to pull myself together the best I could to face co-workers..and 120 middle-school students.

Looking back, I see how far I've come. I feel better today than I did 10 years ago. My disease, although not in complete remission, is set at a very low simmer...but the burner's still on. My energy level is not what it should be...but then again, I'm a 40 year old with two small children, so I just cut myself a break and take a nap when I can.

I'm so glad you're taking your meds. So many newly diagnosed try to do the holistic route SOLELY only to find the disease thumbs its nose at astragulus root...

Blessings,
Kirsten

sara

Christine-thanks for the words of advice, though no worries here. Despite my rollercoaster feelings about meds, I'm not one to mess around with them. I remember too well what it was like before they started working. In terms of RA and pregnancy, check out the blog Muscles and RA- she just had a baby a few months ago!

Kirsten, thanks for your words of wisdom and encouragement. (though sorry to have made you cry!)

claire

Sara, I love reading your posts - they are an inspiration to us all! I have had RA for the past 8 years (since I was 16) so I can definitely relate to a lot of your emotions. Keep up the great posts and stay positive :)

sara

Thanks, Claire! Sorry you got sacked with this at an even younger age than me, but thanks for the encouragement.

Tiffany Westrich

Sara,
Boy do I understand that feeling of wondering if anyone would want to accept someone knowing of my condition... and knowing me "after" the disease. No more throwing the football on a first date or going for a hike, or bowling...unless I'm on a really 'good streak'. But the last guy I was with surprised me with how much he 'didn't care' about it. When I asked him if he knew any recipes so I wouldn't have to use my hands much in preparing he said, "yeah, I'll cook everything for you!" It's nice to know they are out there but it's also hard to wonder if they'll ever know "the original version you".

Amanda

The best advice one of my friends gave me was that it's ok to take a second to cry and it's ok to take a second to be pissed. I've been there too and it's overwhelming. But this too shall pass. It'll be ok.

sara

Tiffany-you said it. Glad to know you've had some luck, though, too!

Amanda-thanks for the comforting words. It's good to remember.

S.

I'm feelin' you Sara. I'm going to be immature and say it. RA is a stupid disease. :-)

sara

Immature? How about true. stupid stupid disease.

Lisa Copen

I have active RA since age 24 and am 40 now. And I still have days just like this that come out of nowhere and for no apparent reason. I've enjoyed reading your blogs and actually found you via Twitter!

I am the founder of National Invisible Chronic Illness Invisible Week at http://www.invisibleillness.com . We have lots of articles and we're accepting guest bloggers and I'd love to have you submit for both!

Sept 14-18 we will be having our 5 day virtual conference online with 20 guest seminars. I hope you will join us and of course, if there is any way you can let others know we appreciate it too! It's people like you who make the difference it spreading the word.

sara

Hey Lisa- Thanks so much! This all sounds really great. I tried to email you but I'm not sure it went through...wo will also try to leave you a comment on your site..or if you read this, send me an email.

sweatysickgirl

i too know this all too well. i've been sick since childhood but only diagnosed (first with RA which is still active) when i was 16... then fibromyalgia and chronic fatigue syndrome to be promptly followed by both psoriatic arthritis and ankylosing spondylitis. i never understand how they can keep which thing straight from the others and many symptoms i don't know which of the bunch is most to blame for. now in my early 30s i've been bedridden (housebound on good days, but, really bed is my home!) for 7 years. it's sooooo hard to stay positive at times. and it's amazing how it seems so easy to go back into this blur of denial only to be smacked down with a bad flare and then shocked at my reaction followed by shock at how unkind i've been to myself about having that very fair and human reaction. i put so much energy into keeping my spirits up it so easily feels like a failure when i respond somewhat appropriately. oh the constant battle! my heart goes out to all of us and everyone coping with whatever kind of chronic suffering in this world. it's especially difficult with illness which we're all too ready to shut away and follow our cultural and societal conditioning to not expect to be sick, sad, unfortunate at times when all the world suffers. maybe not always chronically, but all the same, suffering escapes no one. if only we had better cultural tools to cope with it so that with things especially taboo, like illness, we weren't so often left feeling isolated by this very human and very (unfortunately) normal situation. for all those reasons, i really appreciated this post. soldier on and may love and perseverance keep you safe.

sara

Sweatysickgirl- thank you so much for such a grounded and wise comment. It's true-our culture resists suffering quite a bit, which makes it even harder to deal with it when it inevitably comes around. It sounds like you have really overcome so many obstacles despite being bedridden. thanks for sharing what you have learned with all of us.
take care-
Sara

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