I’m at the final part of a severe rheumatoid arthritis flare-up. I only get a few a year, but when they hit it’s simply a matter of surviving from day to day. That sounds ridiculous and overblown, since I at least know that eventually the pain will fade and I’ll be able to get out of bed and not bite back screams. The first few days seem like they should be the worst since they’re the most painful, and always end with a trip to the emergency room. The next few days it hurts less, but you’re so brittle from a lack of sleep and unending pain that you still feel just as miserable. Your family members and friends understand and care, but after half a week of seeing you hobble around the house and crying in the bathroom even they can get worn out by it all. Then comes two days of fatigue so intense that you feel drugged. You want to get up and work and clean and smile, but you find yourself falling asleep at your daughter’s first play, and you have to leave to get back to bed while everyone else celebrates.
Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies.
Today, as Victor drove me home so I could rest, I told him that sometimes I felt like his life would be easier without me. He paused and said, “It might be easier, but it wouldn’t be better.”
These days are the darkest. But I know they will pass. I know that tomorrow things will seem a little brighter. I know that next week I’ll look back on this post and think, “I should stop listening to my brain when it’s trying to kill me. Why did I even write that post?” And that’s precisely why I’m writing this. Because it’s so easy to forget that I’ve been here before and come out the other side, and perhaps if I have this to read I’ll remember it again next time and it will help me to keep on breathing until the medications take hold and I’m out of the hole again.
Because quitting might be easier, but it wouldn’t be better.
you’re right. i love your honesty and transparency in writing this, too. Thinking good thoughts for the lessening of the pain from the flareup, and for emotional endurance. Be gentle with yourself. 🙂
Victor sounds so amazing. Keep strong sugar. This too shall pass.
*hugs*
Feel better Jenny.
You’ll get through it woman.
We’ll be here waiting! 😉
Sometimes I feel so alone in thiese same thoughts. I hate to say i find confort in knowing you struggle with the same thoughts and feelings and pain and exhaustion. But I guess it’s comforting to know that I’m not alone. that others deal with the same crap i do. Thanks for sharing this tonight.
Sending you love.
Kinda like blogging. Or bathing the dog.
Feel better.
Jughugs, K
Sending you so very much love. Please don’t underestimate what a force for good you are in this world. It is so much better because you are here.
beautifully put. I hear you <3
Amen. Here’s to not needing to look back on this post for a long, long time, though.
My sweet precious grandmother suffered from rheumatoid arthritis her entire life. It truly is a challenge to feel that kind of pain and keep a smile on and an optimistic look at the world around you. She was one of those people who made everyone around her feel good, and I think you guys have that in common. Trust in the support from your loved ones and remember that you are always loved. <3
Believe me when I say that the world would absolutely not be better without you.
Wow. I’ve seriously got tears in my eyes just reading this. I wish I could take your pain away–all of it, or maybe even a tenth–because I wish I could help you. But I’m not omniscient or all-powerful, so I’ll cash in a few of my chips with the Big Guy upstairs and send some healing thoughts your way. Because you? You take my pain away. You make me smile when I feel sad. And that’s pretty fucking powerful.
easy isnt usually better. Anything that has come easily for us has always blown up in a fiery ball of evil, destruction and mayhem and not the fun version of any of those. I recently bought myself a necklace that says ‘life is good’ i wear it on my shittiest of days so I can run my fingers over the engraved letters and remind myself that today might be shitty and tomorrow might be too but overall Life is Good
RA blows my asshole. You are punk rock.
I’m so sorry to hear of your pain. Take care of yourself and I hope that the respect and affection of your fans fill your sails if only a little bit. Hope tomorrow is bettwr.
I’m sorry you’re so miserable. I don’t understand the pain, but I do understand the depression, and the whole, listening to the lies that your mind tells you.
Don’t let it win, because the depression and RA don’t deserve to win this fight. 🙂
sending light and love….
I’m thinking good thoughts for you.
The right thing and the easy thing are never the same. It will always be easier to give up, to give in, to be sad. Happiness takes work and dedication. I’m glad to hear that you will keep fighting!
I hope you start to feel better soon. Love and feel better vibes to you.
My husband is going through a lengthy process of trying to find out what’s wrong with him. Arthritis? Fibro? Something else? We don’t know, but I can see all of the emotions you explained running through him, yet with no treatment or relief…yet. Thank you for this post, for a glimpse into what he must be feeling. I will share this with him.
Love the column. I have RA too and can really relate to the sentiment “Quitting would be easier but not better.” A good laugh helps and Beyonce the chicken is always good for that.
Oh my. I can’t even begin to imagine how horrific the pain you’re enduring is. And I have no words, that don’t sound meaningless and trite. 🙁
My mom suffers from RA, and sometimes I “accuse” her of pulling the “RA Card”. 😉 That being said, I can see the pain in her eyes. I’m sorry you are going through this. Have you heard about bee stings and how they can “cure” RA? True facts.
I know intimately of what you speak, although my RA is depression/anxiety and addiction, and it does get better, even the dark spots come and go. It does.
And your last line is particularly poignant to me today, as it’s the first anniversary of my sobriety. Stopping fighting might be easier, but it wouldn’t be better by far.
You are golden.
Life wouldn’t be better without you. It would be damn unfunny.
Don’t forget you have all of us on FB & Twitter to remind you why we need you around. If only Beyonce came in pain relief form….
I’ve been there…more often than I care to admit. This post is beautiful because it so succinctly sums up the way life’s blows can do a mind job on you. Thank you for being so eloquent in explaining something I have felt so acutely.
hang in there – i have been going through the RA flare/depression cycle the last month. finally starting to feel back to normal. RA sucks but giving in sucks harder. keeping you in my thoughts.
You are magnificent.
Good answer Victor! I think you have redeemed yourself for threatening strangle Jenny for buying towels.
Good answer by Victor. You’ll have to give him a hand job in payment when you feel better, and you will feel better 😀
I dont know you, and I dont have RA but I have had to deal with other sometimes life-hindering illness.
I am so glad victor supports you.
I hope your physical struggles get a bit easier to handle….meanwhile let me say I deeply appreciate your candor as you share yourself.
It’s hard for me to say how much this touches me. My mom suffers from MS and recently went through a patch that pushed her to her limit. Thankfully, she pushed through, but almost didn’t. I feel your pain. Know you are loved and you have loads of people who you have touched. You are amazing, and i for one am not ready for you to give up.
Thanks Jenny.
I love your husband’s response. And my guess is that your penchant for enormous metal chickens and homicidal leperous monkeys is harder for him to take than caring for you when you’re sick. 🙂
Hoping you’re feeling right again, soon.
Jenny, you are loved. And you are stronger in the moments you feel like you’re failing than when you feel you’re at your best. This world is definitely better with you in it.
I’m sorry you’re feeling badly right now. I heart you.
Though I don’t have first-hand experience with this, one of my close friends does, and she deals with the very same thing – medications, injections, etc…so I do have some understanding, and appreciate how difficult it is. Just hang in there! Everyone’s rooting for you!
True, “It’ll never get better,” but the treatments will. When my MS started I gave myself shots that made me feel like I had the flu and had a 30% success rate. Fifteen years into my MS, I take pills that have a 60% success rate.
Jenny~ I know it’s tough, my brother has RA. However, please know that there are other women in the world, *me specifically* that rely on your honesty, sarcasm, humor and wit to make it thru each day. On a good day, I am a hot mess, on a bad day, well, you just don’t want to know. Keep your chin up and just do what you do best, torment Victor with Beyonce and Copernicus!
I know so many people that suffer from this. Just be in the moment and know that the people around you, love you.
It is what it is. There is nothing you can change about it. Sadly. 🙁
You might inspire and give hope to others in the same situation with your postings. I encourage you to post more of these, as they are from the heart and are in the moment.
Everyone understands reality, such as it is.
I hope you recover soon sans guilt! You just do what you can do, when you can do it and go on from there. That’s life, that’s your life and it is what you make it. What you focus on at any one time, is your choice. There’s no harm in focusing in on your reality.
That being said, I hope you feel better real soon! 🙂
In spite of his problem with towels Victor sounds like a very wise man. I hope you are completely pain free very soon.
I’m glad you did write the post. It reminds me that I’m not alone. You’re an amazing woman! Keep on fighting the good fight!
You know what’d make you feel better? Not buying towels. Hang in, punkin’.
I know this sounds cheesy, but you’re an inspiration. Reading your blog (and mommyblog and parenting column and sex column and twitter) helps me deal with my depression, and I really can never express to you how much I appreciate you being you. I’m sorry that you’re experiencing so much pain and exhaustion.
Feel better soon, and maybe someday I’ll get to meet you and we can have wine slushies together. Just because I’m a man doesn’t mean I’m afraid of hanging out in a ladies’ room. WOLVERINES!
I hope you feel your best again soon. You REALLY need to read Robb Wolf’s blog – he helps LOTS of people recover from autoimmune diseases that were thought uncurable. Seriously. You don’t have to live with RA. check him out, what can it hurt?? robbwolf(dot)com
Sometimes I wonder why my husband stays married to me and he said “because you make me laugh” and that’s enough.
There’s very few people that can truly brighten other people’s lives. You’re one of them. As long as there are good times then the bad times are worth it.
Feel better!
Jenny, It’s hard to see you hurting. Your posts that aren’t funny are almost painful. But they make you REAL. And, I can only speak for me, but they make me love you that much more. I know that my life is better with you in it, without a doubt. As I think most of your dedicated readers feel the same way. So I will always laugh with you in the good times and feel pain in your bad times. Thank you for writing through both times. I appreciate it so very much. I hope you feel better soon.
If it’s any consolation, my days are made both easier AND better because of your blog. So if you weren’t here, it’d be both harder and worse. Did that warrant a smile? Hope you feel better soon!
I’ve been there through different avenues and I really feel your pain. I’m glad you realize that writing so that you remember it will pass will help! I’m sorry you struggle with this. You are a hilarious and strong woman and I enjoy reading your blogs so much. I also have great respect for you for putting it all out there and your blatant honesty. You are amazing!
I’m a newbie follower (total Beyonce jump on the bandwagon fan) & lurker. And I just wanted to reach out and give you a heartfelt hug. Definitely glad you’re here.
This is precisely why I love you Jenny. Because you seem to understand, and more importantly, write what I feel when I get sick. And it makes me feel not so alone. You are amazing, and strong, and a better person than some of the people I know. Just remember you’re allowed to have bad days and that it get’s better. That you are loved.
Oh, darlin’, my heart goes out to you…I’ve been following your blog for a few years now, and I wish I could take the hurt from you. You’re a very special person and even in your darkest, pain-filed days, you still manage to inspire and bring hope to others. You’re a blessing to so many…and even now, I needed to read this as much as you needed to write it. Never stop being you. Much love and gentle hugs from Tennessee.
Rheumatoid arthritis is the pits. However, you can adjust to the pain levels and fatigue if you ever hit a spot where the meds don’t work. It is a mental thing, a trick you pull on yourself. Just remember that it can be endured on days that you feel like you can’t endure. I watch my husband live with it (the meds no longer work for him) and realize how lucky I am to be healthy. But he just mentally shrugs and keeps going somehow. He feels lucky that it is not life-threatening, just life style threatening. That it is, but somehow he just soldiers on and you will, too. Even if you think you can’t. He’s slowly figured out how to adjust to the disability and still do the things he enjoys. You will, too. Be happy the meds will eventually calm your flare. You just have to endure until it does, just for another few minutes or a few days. You can do that. I know you can and you know you can, too. It’s just nice to whine a little occasionally. Hugs from CH where we have been there and live there still.
My own pain issues and depression don’t even compare to yours, but I totally get where you are, now. Hopefully, come September 10th, I’ll have something for you that will brighten your day and leave me feeling furiously happy with myself that I could bite the bullet and really do something worthy of you.
Wow. That kind of sounds like I’m gonna shoot someone for you. Very Hinkley like. EEE.
I’m not gonna do that! I promise! Unless you consider shooting a picture of someone with something like shooting someone, in that case, I’m totally doing that.
Thank you for posting this. I don’t suffer from rheumatoid arthritis, but I have felt that awful, sinking depression. Most of the time it feels as those the depression is brought on by severe exhaustion. Sometimes it’s just life’s little hang-ups.
Hang in there. There are many strangers like me out in cyberspace who look to you for a bright spot on our own dark days.
P.S. I’ve often thought if I could just find my own metal chicken, I would put it in my front yard (I’m from Oklahoma, we can do crazy shit like that and no one would notice) and every day when I pull into the driveway after work, it would make me think of your blog about Beyonce and I would smile and be comforted. 🙂
That Victor. He’s a keeper.
I have fibromyalgia, and I am right there with you. I need to write myself one of these posts.
Can I give you an e-hug? Your husband sounds like a keeper. I’m so sorry for your pain. Your words make me and laugh and cry! Keep fighting.
Thank you for writing this post. You are so right about like being easier, but not better. My Mom took her life when I was in my early 20’s and her loss is profoundly felt.
Thank you for making me laugh most of the time, but thank you this time for being brave enough to share so I don’t feel so alone.
I have Crohn’s disease and the pattern is so familiar, though not as acute as your RA flares. It’s so hard to explain the pain and fatigue.
Love and prayers
buddists say sometimes life sucks. and it does. i went through ptsd after a 3 day labour and i felt like my family would be better off without me but they didn’t agree. neither does yours. we’re cheering for you and those of us who can relate are feeling for you.
Hey there. I know your pain, literally. Thank you for sharing you life, I would have never guessed that you still do all you do with this awfull disease. I will always fight it but when it brings me low like today, I know that I can read your blog and laugh til my cheeks cramp and my belly hurts. You’ve made my world better today. Thanks.
I have no great words of comfort for you, but as our own worst critics, it is hard to stop. Know that you are doing the best you can and that your friends and family all know life would not be better without you in it.
I’m so sorry you’re going through this.
“It might be easier, but it wouldn’t be better.”
I’m glad you have this level of support. Feel better.
I’m sending you hope and compassion and light and mostly love.
you are the best. thanks for the strength..sending it right back to you.
My nephew has RA, as well as psoriasis. My daughter has Mastocytosis (It flares like your RA does, but different symptoms) – I have hypothyroidism that appears to be treatment-resistant at this point (at least that’s how I feel)… I battle depression too. I have pain too (not like yours, though). I completely understand the mind-numbing fatigue, and the voices in your head telling you that you aren’t good enough, that you should just ‘get up and work through it’, that you are l.a.z.y. (I HATE that word). Your post made me cry, but not in a bad way. I just wish I could take it away from you is all. You bring so much brightness to so many, it sucks that you have to feel this way from time to time. Thank you for sharing your pain, because there are a LOT of us out there in pain, and we feel just a little bit closer to you tonight. Sending you good juju, in hopes that you are back on your feet tomorrow, and completely oblivious to how bad you felt this week.
ps…. we have a ‘tanning’ bed from Mercola dot com. It’s called the Sunsplash Renew. It hangs over a door, so it takes up NO space. check them out. My daughter’s flares have decreased DRAMATICALLY since we started the therapy, and I know that RA has also been linked to vitamin D deficiency. I don’t know if it would CURE you, but if it lessened the severity or frequency of your flares, I think it would be TOTALLY worth it. <3
Chronic pain is one of those things that you cannot fully grasp until you’ve experienced it. And then you wish you could go back to not fully understanding it. I’m sorry you get it, I really am.
I hope your flares stay few and far between and that your mind is also on the mend soon.
Where we all are sometimes, in our various little ways. You’re going to be okay. Who else is going to lead the zombie apocalypse?
Big, big hug Jenny… I feel your pain, get well soon and every time you feel crappy just repeat to yourself that this too shall pass <3
Louma
I have Fibromyalgia. And I feel just like you. <3 <3 <3
(((hugs)))
Thank you for this. I’ll have to remember Victor’s words the next time my boyfriend wakes up because I couldn’t control my middle-of-the-night-oh-fuck-I-can’t-sleep-again panic attack and burst into tears. His life *would* be easier without me. But if he thought for a second that it would be better, he’d be gone.
I don’t have arthritis, but this post still makes me feel less alone.
I wish I didn’t know what you were talking about, but unfortunately some days, I need Derek to help me get out of bed. RA sucks, no way around it. It’s an endless cycle of “pretty good” to “completely awful and can’t move” and everywhere in between.
I understand some of what you’re saying. That’s why I started a blog – there are some days I laugh so much I cry and some days I just cry. I have told my hubby the exact same thing and, like your Victor, he wouldn’t have it any other way. Auto-immune life sometimes sucks. I was having a dark day when you introduced me to Beyonce. I’ll be forever grateful, sistah-Texan.
Thank you. This is where I am right now.
You nailed it, and so did Victor. I can’t imagine the physical pain you’re going through and my heart aches for the mean tricks your brain is playing as well — my friend calls those voices your sabateurs (in my head they look like the cartoon gargoyles in the cartoon, um, “Gargoyles”) and they’re very talented at keeping you from being your best self.
You make the world so much better, and I wish it was easier for you. I sent my sister (who was recently diagnosed as bipolar II and is having a HELLA bad year) your blogs about Beyonce and then a desktop Beyonce for her windowsill — it was the first time she’s sent me a normal happy upbeat email in months. Thank you for sharing some of the hard stuff as well as the awesome!funny!crazy stuff.
Thank you for writing this, Jenny. Really. I was diagnosed with RA several years ago, but my pregnancies have kept it at bay for a while. (Apparently those stupid hormones are good for something after all.) But my youngest is now 7 months old and those familiar aches and pains are resurfacing. I’m so glad to know I’m not the only one who thinks “Is this all in my head?”.
Thank you. You’re blog makes me so happy with it’s mixture of laughs & reality! Pure awesomness! And it’s nice to know others struggle in the darkness caused by the shit our evil bodies deal out.
You are awesome.
Victor is awesome.
xoxo
I don’t comment much, but I always read. RA is a bitch and then some. I know because I have it too. Mine is matched with Bipolar disorder so I understand the depression part too. I also understand how the pain can cause the depression and all those damn lies it tells you. You are right though. This too will pass. It will get better. Hang on a little bit longer sweetie. You’ll get your normal back.
You are such a rock star. And I don’t mean in the ” Sid you ate all the drugs” kind of way, but in the “You inspire me all the time” kind of way.
Love!
I am sorry to hear about your flare up. I am not sure what you have used to make it feel better, but I do hope that the pain will lessen and go away soon. I also hope that you will be gentle with yourself. We all have faults, we all have needs, and that is why we have family and friends. So they can cover your butt after you have covered theirs. =D And if rheumatoid arthritis had a door way somewhere well then it would need a whole flock of metal chickens.
Im going through labor pains right now, and I wish peace on both of us, but more for you. I am thinking of you. Don’t let your mind take over. You are so much more than your pain.
Easier lives are overrated. Highly. We need you around because you poke at things until they get up and do something.
It sucks when depression eats away at you, and few people understand what it’s like until they’ve gone through it. Just getting up is a big step. It seems like small potatoes to people on the outside, but when even getting up hurts, it’s a monumental STFU to the voice in your head when you can get on the computer and blog about it. So, Jenny: 1, Demons: 0 .
I am so sorry you are in such pain. I know that chronic pain is awful and I can see why suicide looks like a viable option for those who live with it constantly, day after day, week after week, and month after month. I woke up one morning a couple of days before Thanksgiving one year with this horrible pain running down the back of my right leg. Painful so much I had to rush to a friends house for an acupuncture and massage treatment on my way out of town for the holiday. It only helped a tiny bit. After weeks of physical therapy, drug therapy, traction and an MRI, it was discovered I had a ruptured disc at L4 / L5. I was only able to work for 4 hours a day and laying down was about the only thing that felt sort of ok. Everything I tried just barely took the edge off my pain. Then I wasn’t able to stand it any longer and my doctor finally referred me to a surgeon who didn’t hesitate to do surgery the following week. I felt so much better just waking up in recovery!! Sorry for the long story but I just wanted you to know I get it. Please be good to yourself and feel better soon. We need the BLOGGESS!!!!
You, Jenny, are an inspiration to us all. You inspire us to be better than we are; to laugh and have fun. You also make us realize that we aren’t alone when we are in our darkest moments. The world simply wouldn’t be the same without you here. I’m so sorry you are in so much pain and in such a dark spot. Sending lots and lots of love and lots and lots of hugs and hoping you feel better soon! x
Most honest portrayal of the whole thing of living with an immune system that is unpredictably eating the rest of your body that I have ever read. The physical is only the half of it. It is the normal of people like us with autoimmune diseases, but it is also what drives some of us to savor that which others avoid, like James Garfield and Beyonce. One foot in front of the other. You can do it.
Thank you for making us laugh. But even more so, thanks for opening up with us. We like you.
I’m not going through the exact same thing that you are, but my anxiety is through the roof the last few days. Knowing that these horrible things will pass, that it will get easier is sometimes the only thing that makes trying possible. You are a hero to me. Finding ways to make sure you always remember it will get easier.
So sorry you are feeling so crappy! Victor is a prince, and he’s totally right. You make life better. Beautiful post.
I’m forwarding this to my Dad. He suffers w/ RA and I know it has to be hard on him and my Mom. I love how honest you are, and I think by being so, you help a lot of people, becomes sometimes laughter really is the best medicine there is. Lighting a candle for you tonight and sending healing vibes your way.
I’m pretty sure that Victor’s life would only be less entertaining without you! Thanks for sharing posts like this with us. xoxo
I’m sorry for your pain, but thank you for sharing your struggles and sense of optimism.
Jenny, I hope you feel better already. I was a chronic pain sufferer for over 14 years. I am lucky to have come out the other side, but sometimes I look back with bitterness, feeling that I was robbed of my twenties, knowing that I was lucky to have survived my late teen years when the pain steered me into an addiction to pain pills. In all of those years I never once had enough courage to be vulnerable to others, to let them in and share what I was going through. You are a hero in so many ways. Your body may completely suck sometimes, but your soul totally rocks.
Feel better soon…
Yay to Victor for finding exactly the right words. Easier ain’t always better. Know that you are loved.
It’s always alright in the end…if it isn’t alright, it isn’t the end…
Hope you are feeling better soon. The world would be neither easier or better if you went away. If you ever doubt that, make sure you ask any one of your readers.
Much Love to you!
Thank you.
I’m sitting here crying because yesterday, I fell into that pit. That blackness that is, “There is no point to a life lived this way. I drain everyone. My friends are sick of listening to me sob. What’s the point?” Those times when you really don’t want to crawl out of bed, you wish people would let you rot and die because this can’t be it. This can’t be my life. All those dreams you have to give up because of flair-ups that are unpredictable and horrible.
I have my family, but I’m an adult. And feel like such a failure for never having been able to move out on my own, or hold down a full-time job, or anything else. So thank you for reminding me it’s not just me. And life wouldn’t be better without you. I love reading your blog and relating with your pain and humor and stories that I just adore. I WOULD NOTICE AND NOT BE BETTER OFF. I’m telling you because I hope, one day, someone says the same to me.
Yea, I’ve got Lupus . . . so I know these pains all too well. They blow, on about 9000 levels. About the only thing we can do is find a way to make humor in the mix. I flip the bird at my Lupus rash, and I tell people my bruises are from climbing Mt. Everest in sling backs. Though, I don’t recommend offering someone a bloody tissue (from a nose bleed) and saying “Want some Lupus?”
Kira, I would notice if you were gone. The world would NOT be better off.
Yea, I’ve got Lupus . . . so I know these pains all too well. They blow, on about 9000 levels. About the only thing we can do is find a way to make humor in the mix. I flip the bird at my Lupus rash, and I tell people my bruises are from climbing Mt. Everest in sling backs. Though, I don’t recommend offering someone a bloody tissue (from a nose bleed) and saying “Want some Lupus?”
Victor is fucking awesome. And you are my hero. I’ve missed you and glad you’re seeing the light at the end of this shit tunnel. XOXOXO
Thank you, Jenny. So many people don’t understand chronic illness because much of the time, there’s no big outward sign of what’s wrong, no gaping wound, no cast, no bruises. But the pain is still there, and will never really go away. It kills me every time my wife is in pain, and there is absolutely nothing I can do for her, other than comfort her and do as many things as I can so she can just rest. And Victor’s right, sometimes things seem like they would be easier, but I know they would never be better.
This post was wonderful because it gives those with chronic illness something to relate to, and it also gives the people who love those with chronic illness something to relate to as well. Thank you.
You know, I’ve had a really bad couple of days, beating myself up for being overweight, mismanaging my finances, being unemployed and secretly enjoying it. My husband’s family is a cluster fuck and he just had to move his dad out of his house because he can’t take care of himself. He gets so angry when he’s stressed out and directs it toward me. The only thing keeping me from just crumbling into a heap are my four little boys, yet they are exasperating too. God that is a big whinefest, but it feels so good to get it out. I’ve become so accustomed to hiding my feelings I don’t even know how I feel anymore.
This really isn’t all about me, though. It’s about you, Jenny, and my admiration of your openness and raw honesty. All the best to you. Knowing you’ll get through your moment makes me feel confident I’ll come through mine. I really needed to hear this tonight.
Love you! And I love that Wil Wheaton is all your BFF now on Twitter.
Isn’t it nice how writing stuff down gives you so much perspective later? You have courage to share such emotions. Stay strong and feel better soon.
My life is definitely better with you (via your blog) in it!
Jenny.
This makes me want to cry because I have fought depression for at least four years and I know that voice. It says “they’ll be okay without me.”
That voice is a lie. It does get better and NO THEY WOULDN’T. With love, hugs and understanding. Stay strong, sister. Or fall apart. It gets better. Know this above all.
Heidi (girl to mom)
Just hang in there…. and here’s something to think about….
The Roller Coaster scene from Parenthood.
It’s sort of like those times when I get sick, and I never get sick. And I think to myself, “HOLY CRAP I’VE NEVER FELT THIS HORRIBLE IN MY LIFE!!” but, in reality, last time I was sick (or had cramps… or got poison ivy on my va-jay, which happened), chances are I did (in fact) feel this bad. It’s strange how your mind blocks it out, and you forget that you were there, and then the reminder helps you get through it.
I know that it’s not the same, and I know it may not sound like it compares. But I wanted you to know I am feeling for you, and my heart goes out.
I’ve had rheumatoid arthritis since I was 3 years old (now 36) and my bad flare ups still take me by surprise, knock me down a few pegs, and leave me wiped out emotionally, physically, mentally. In college, my girlfriends thought I was faking it (for weeks? really? get a clue) and my now husband has been patient beyond belief. He doesn’t understand, but he is empathetic. You’re not alone, even if it feels lonely. Be well.
Stay strong, Jenny! Our families and friends would much rather have us in our slightly damaged states than not at all, any day. And they say God doesn’t throw anything at you that you can’t handle. Unless it’s the Armageddon asteroid making a direct hit on you, cause then you’re probably just fucked.
You make the world a brighter, more fun, laughter and smile-filled place for people all over the world. You inspire us to do crazy things like, take photos with metal chickens and, let our kids write banana messages, and… remind us that life is about fun and family and friends, not just the tedium of a daily grind.
It’s not much for me to say that I hope this dark time passes quickly, but, I have no doubt thousands of people across the world are hoping it too, and sending strength and love in their thoughts.
RA sucks. I feel your pain. I was diagnosed 15 years ago, in my mid-20s. There’ve been times I felt like a human pincushion from all the injections and IVs, and got pushed to the edge because the steroids do weird shit to my brain. I can’t tell you how many times I’ve wanted to end it all just so that the pain would go away. But you just put it perfectly: “I’ve been here before and come out the other side” each and every time.
Work with your rheumatologist. I’ve been aggressive, and it’s gotten a little better over the 15 years. Hell, there’s drugs now that weren’t even available then, and even though they haven’t been life-changers like they have been for some, they definitely make the bad days less frequent.
And since I’m having a string of good days, I’ll walk in my local Arthritis Walk tomorrow in your name and mine and everyone else who also has RA.
Stay strong!! Wishing you all the best.
XOXO
I won’t even try to pretend I understand your ongoing struggle with this, but I wanted to share something. A year ago I had some sort of “disease” that went undiagnosed that manifested like RA. My joints swelled, most days I had unbearable pain, and I went through a battery of fruitless and frustrating doctors and tests. What I had went away as mysteriously as it appeared and my conclusion is that it was related to a Lyme tick bite I had gotten the year before that.
While I was sick I discovered fresh turmeric root and started making teas from turmeric, ginger, and honey. Drinking the tea itself was soothing, but it helped more than any medication in reducing the swelling in my joints and I wanted to offer that to you in case you hadn’t come across this remedy. I also offer this well aware how maddening it can be when someone offers advice for something you’ve been struggling with and have probably tried everything for, so just know that I have no illusions that this will be your answer or will cure you. But I can’t not offer something that helped me in hopes that it could bring you even a little bit of comfort.
Be well.
For some reason, the best and brightest lights in the world go through the crappiest things.
Feel better soon, I’m sure that your nearest and dearest just hate that you’re in pain, and that they can’t make you better. The world inside your head is always worse than the world you’re actually in.
I cannot even begin to tell you how much I feel you with this post. I have fibromyalgia and was sick with first bronchitis and then strep for 6 weeks, and am now fighting through the resulting fibro flare. It is sheer hell, and this morning I was lying in bed crying, feeling exactly the way you described here. Those little lies got to me, the idea that my family would be better off without me, they’re so burdened, what do I contribute, etc. I felt so, so tired and worthless, and I didn’t see the end to this flare.
… and then my husband came in, and without realizing how down I was hugged me, and told me he loves me, and asked if I wanted to go walk and then get Icees. I realized that no… like Victor said, sure it might be easier without me around (and maybe not, I don’t know), but life wouldn’t be as enjoyable. So I got up, took a deep breath, washed my face and went with them, and we laughed and told stories, and I felt wanted. Loved. Needed.
Thank you so much for being open about what you fight with. Chronic conditions are horrible, both for the people who have them and for their families. Sometimes it helps to have someone remind you that it doesn’t stay this way.
So yea… you make me laugh, you inspire me, and you make my crappy days brighter. Thank you.
I think it is harder to be broken when you know you can be better. Waking up to have your hopes dashed is hard! This, too, shall pass but that doesn’t make it easy! I hope it wraps itself up quickly so you can get back to your regularly scheduled programming.
I love you.
I fell in love with this blog when you wrote about a Big Metal Chicken named Beyonce. But, this post right here? This is the one that told me that I’ll be reading you forever. I don’t have RA, but I do have some pretty batshit crazy chronic pain and this post is It. Thank you for writing it. Thank you for verbalizing what it’s like in the vortex of the pain and the guilt that comes with it when you have a husband and little kids. Victor nailed it. This will be my new mantra. It would be easier, but not better. Thank you.
As the mother to a child with a chronic illness…your family does in share in it but the love is no less and there is NO burden to be had. It is what family does. Never, ever feel bad for having the hand you were dealt. As I tell my seven year old, everyone has something. People have heart problems, cholesterol, weight problems, depression, anxiety…overactive bladders….whatever. No one is perfect and it is our job and honor to love and care for each other. xooxo
Now I know why I like reading your blog so much – my 6 year old daughter has JRA. Most of the time she is fine. You would never know by looking at her that she has it. We just went to a camp for kids with arthritis and as I looked around, I realized how blessed we are that she is not in a lot of pain. She’s had to have three injections since she was diagnosed at 3 1/2, but that is far fewer than I was told would probably happen. I’m sorry you’re in so much pain. Thank you for writing such truth about the disease. I hope my daughter is able to one day express herself about her JRA as honestly as you do.
Hugs to you hon <3 And Kudos to Victor!
I’ve been battling depression for more then 16 years, on and off meds. I know how you’re (mentally) feeling. Besides your family there are hundreds, if not thousands of us that care about your welfare. Don’t give into the thoughts, don’t give up. We’re all pulling for you.
I just recently discovered your blog and I became an instant fan. You have a gift for making people laugh. Then I read that you have RA, and I immediately gave you a million cool points. I am 31, but I was diagnosed with RA at 19 and I’ve already had both hips replaced. Just remember that a sense of humor is better than any drug – except demerol, cause that’s my fave. And the good thing about feeling bad is that the only other option is to feel good. Hang in there. 🙂
hugs…you have put a smile on my face so many days and I hope today I can send you a virtual hug and some feel good vibes in hopes you will be feeling bright and healthy soon…x
My brother just recently introduced me to your blog, where I learned about writing messages on bananas and about Beyonce! Both made me laugh so hard! But then you started to write about RA, and I was hooked! I’ve not met another person that has RA, so it has been great to read about how RA affects you and how you are coping. I’ve had flares like you wrote about, especially after each of my 3 kids were born–nothing stinks worse than being in so much pain that you cannot even pick up your babies! But eventually I was able to get back on Remicade (a life changing infusion I get only 1x/8 weeks), and life became manageable again. Hang in there, and I hope each day starts feeling better than the last! And thank you for making us laugh and cry along with you!
My mom suffers from RA. After a five year, very scary struggle, she was finally diagnosed. Thank you for sharing this. I have only experienced my mother’s struggles from the periphery and reading this has given me a greater sense of what she goes through. Sending good (hopefully) karma your way in hopes that you have a safe, smooth recovery.
This is one of the reasons I love your blog. There’s no bullshit with you. You tell us how you feel and share the crazy stuff we all have in our head. It sucks to live with something that tests you in ways you never want to be test. I for one understand the emotion behind this post as I too have struggled with ongoing health issues. Thank you for sharing and letting us know we are not alone. I’m so pleased to see that your fans have shown you, YOU are not alone. Your husband is AWESOME – plain and simple. Say and do what you have to do and I look forward to when you feel up to crackin’ me up again. Remember your strength!
Stay. Strong. It sucks but just do it.
I can’t imagine your pain. But I admire your honesty and openness and hope you feel better quickly.
Oh, girl. sometimes i feel like i’m the only one with that bitch of an inner voice.
HI Jenny,
I don’t know you but i follow your blog. Usually it is funny. I am sad? no… surprised maybe, to see that you, too, are human and have to suffer through so much pain. I appreciate your honesty. I have been there… on those darkest of dark days. I am there for a different reason, but still, I’m there too. They always pass, like you said. But when you are living it, in the middle knee deep in sadness and fear of what the future brings, it helps I think to have people who will understand.
I hope you do feel better soon. I shared my blog that I have been keeping for my son. Take a look if you want.
Katie
Suck. Sucks more that medically-induced comas aren’t standard treatment.
Thank you. Seriously. Thank you for being there and for listening. You don’t know how much you’ve helped me.
I have so so much respect for you for writing this. To be so gut honest about suffering takes a crazy strength that I know I, for one, don’t have. Don’t you for one second regret writing this, because it is historical proof of your badassery. Chronic illness is fucked up in so many ways, but I hope you realize you have a fuck-ton of people who support you and whose lives have been enriched just from you being around. We love you!
Bless your heart. I’m so sorry you have to go through that. There’s nothing worse than extreme pain. This post really rang true for me tonight. I’m recovering from foot surgery and I keep telling myself to stop whining about the pain. I’ll eventually be able to sleep again. I tell myself to get up on the crutches and be more motivated to have a good day. I tell myself I am such a burden on my friends and family bc I’ve moved from my grandmother’s to my mother’s to my aunt and uncle’s. I’m a pain in the ass! And it’s severely depressing. But like you said, it will get better. I hate that it’s something you have to deal with more than once. It was a good idea to write this as I do think it will be a good reminder when or if there is a next time. Hang in there my dear bc I just recently found your blog and love it. Your blog and your tweets make me double over in laughter. Love it and I need that!
On July 10th I got hit with Serotonin Syndrome.
The doctors said that I wasn’t statistically “supposed to survive” it. It was serious. I’m still really sick.
Some days I can’t get out of bed. Some times I just cry without my husband knowing, because he is trying his best but this has been so unpredictable. He almost had to deal with his wife dying, and now there’s a rollercoaster of emotions and pain and ups and downs and fevers and sweating and crying. It’s impact on my entire body has been immense. This isn’t my first rodeo, I’ve had to deal with a huge variety of physical illnesses that a 20-something shouldn’t have to.
I’m crying now and I don’t even know why.
It’s horrible. It is really, really horrible. I open my eyes in the morning and try to wonder what balance of medications will make me the most productive, and I lie, and I say that I’m Ok when I’m actually exhausted and I want to curl up in bed and close my eyes and just make it all go away. I don’t know how I can get through this intact. My family has been so, so supportive but they have limits and can only emotionally handle so much.
And I am sorry for making this about me. But because of this I discovered this book: http://www.goodreads.com/book/show/503349.Close_to_the_Bone and while it’s “fluffy” in some places, it helps. It really does. Nothings going to make the pain go away, but this helped me understand things a bit more.
So much love to you.
I have FM a chronic pain disease, a friend just showed me your blog, i understand all too well! . god i do, i wish you pain free days and joyful ones too…Pain is a curse in our lives..hang in and hang on, and always love who you are…to be pain free is the true joy of living”..
Di..
Much love to you. And Kira, too. And anyone else who needs a reminder that they’re loved. When I want the black hole to swallow me up and wish that I would just fucking die already, I’ll play “It’s a Wonderful Life” on the movie reel in my head, and remind myself that we all touch the lives of so many others.
I have a son with autism; and lately, it always feels like it’s just too much. The forever-ness of it all, knowing that this. is. it. That he will never tell me he loves me, that my husband will never understand what it’s like to be screamed at all day long, that I swear to God I can’t take one more day of this because it’s breaking me. And then my husband’s good friend from work died, and it reminded me that people really do care. That we need each other. That we matter to each other.
Wishing you clarity in the darkness, too.
Today, as Victor drove me home so I could rest, I told him that sometimes I felt like his life would be easier without me. He paused and said, “It might be easier, but it wouldn’t be better.”
So, you have something like 140K followers and there are already over 100 comments on this one post and one more comment more or less isn’t going to make a significant impact, I know. I mean, I do know.
But at the same time, I have to say you, your honesty, your…realness makes such a difference in the life of this one little person. *points at self* And that statement above? That one right there? That exact conversation has taken place between my husband and I when it comes to his Crohn’s. Only, y’know, with me playing Victor’s role.
So, thanks for posting this. You make such an incredible difference in so many lives. Even if it’s via metal chickens, you make us all smile and appreciate life. LIFE.
Having a friend who also has these types of episodes, you have done me a favor by describing it so well. I do hope that you are on the up side of the hill now.
RA sucks anus. You are a total badass. Hugs and healing your way.
It’s so hard when you are living through something so intensely painful to think of anything else. Consumed by agony & alone with one’s thoughts can be a dangerous place to be, I hope this post does help you next time, but I also wholeheartedly wish that there didn’t have to be a “next time”.
RA sucks big time. I’ve had it since I was 17 and totally understand all you are going through. Hang in there, it’ll pass!
I usually keep some extra tough vibes in reserve for myself on worknights (as I do about 10 hours of heavy lifting each night), but you need ’em more than I do, Jenny. Yer a tuff broad, tho! You’ll get through this and head out on a mission to find another friend to bring home for James Garfield, Beyonce and Copernacus to cling to (and torture Victor).
Keep yer head up, chicka!
This is one of the most powerful things you’ve ever written. Thank you.
I live with fibromyalgia and crushing chronic fatigue syndrome. I am so with you on this post, I can’t even put it into words. May you start to feel better soon – I wish we all had the magic bullet cure.
I know the feeling. Not about the arthritis but man depression is such a bitch. And for the record, OUR lives would never be easier or better without you. <3
This post was particularly touching for me. Wishing the best to you and Victor. It’s always nice hearing there are others that can relate with what you’re going through, even when it’s not exactly the same situation. *warm fuzzies*
I haven’t been reading your blog for very long, but I already know you deal with everything better than most. You are strong and awesome and I can’t wait to read what you have to say tomorrow. I hope you are feeling better.
Thank You, Jenny. Thank you for reminding this depressed fibromyalgic woman that things can and will get better.
I’m so fucking tired of waiting. I could deal with the pain and the fatigue if only the depression would let up. Please, something, let up. Please.
Nadine
I understand. I have joints that dislocate and bend in wonky ways and oesteo arthritis in my hands and knees, despite being only 22. Some days it’s not easy and some weeks, giving up would be easier.
Feeling this.
Aw,honey, that Victor is a keeper. Even if he doesn’t understand six-foot metal chickens. {{{hugs}}}
Thank you. I needed this today. I hope you feel better soon, Jenny.
Sister, this touched me. I know some people are going to go on and on about how you’re supposed to be funneh, and irreverent. But I’m glad you took the risk and posted this. This shows everyone that no matter how normal people look, there could be something underneath that’s hurting them. And no matter how strong someone seems, they can feel the exact same way I do.
When you come back to yourself, and read this… know that I’m glad you posted it. And I know. Thank you.
Jenny, I’m extremely shy and almost never post anywhere on the interwebs, but I’ve been drinking some gin and feel brave enough to de-lurk to tell you first of all how sorry I am to hear you are ailing, but also how much your blog has helped and inspired me since early 2011. I know, I’m shamefully late to the Bloggess wonderland, but in a way I’m grateful for that because your posts — and I’ve read every single one in marathon stretches of feeling paralyzed and unable to communicate or leave my home — have helped me through the greatest period of depression in my entire life. I had a series of devastating personal incidents occur in the span of a month (lost my best friend, lost my grandmother, my significant other lost his job, and I went through a hellish experience at work, a job I adored and did well, but had to quit because it was making me physically and mentally ill) and could. not. cope. I’m still recovering, but your stories distracted me and gave me the courage to start writing again. Thank you for the laughs but also for helping me see the light in the throes of the crushing, suffocating, excruciatingly painful darkness. You are a national treasure. Hugs. XOXO
People talk about the grieving process. But they so rarely talk about the chronic illness/recovery process.
That feeling that it will never be right again… I feel sometimes like I forget who I am, who I was, what I’m really about, all lost in a haze of pain and fatigue and a body that is so occupied with process that it can’t do anything but be in the state that it is.
Do write… looking back on my journal, it reminds me both that it’s been worse and that it always gets better eventually. (I have fibro and am currently pregnant. The combination is Not Pretty.)
I dont have ra fortunately. That’s one of my dads myriad of probs. I alw. I always tell him all those damn meds just guarantee he will be well preserved for decades to come. Personally, i am apathetic about this living thing. I.tell my mom…not gonna off myself.bit I also have no desire to make this shit go on any longer. Yes, issues with anxiety and depression. Sorry for being captain buzzkill.
oh honey. you lift a lot of boats just being you. .
You take away so much pain and bring laughter and happiness to so many; it’s unfair that we cannot take your pain away. I’m glad you have a family that loves and supports you, and an online family that hopes you will have only better days ahead.
Thank you for sharing such an intimate and not funny side of yourself. It shows, in fact, how strong you really are.
We all love you, Jenny. Our lives are certainly better with your hilarious blog posts. Feel better, darlin’. You’re in our thoughts <3
I’m so sorry you’re hurting. But I appreciate you sharing the good AND the bad. I don’t have RA, but I do have restless legs syndrome, which I know sounds totally made-up. Sometimes it means I go up to 5 days without any sleep and my legs keep moving and it makes me BONKERS. Or sometimes I can sleep a little each night but not more than 1 or 2 hours, for weeks on end. And I worry that I’m exhausting the people around me, and that they are getting sick of me having problems, and talking about them. I hate missing out on my life because of a stupid disease, with a made-up sounding name. I even miss going to work, when I have a flare-up. Just a small aside- I had a bad flareup of the spastic legs this week, and I got really depressed one night until I saw my little Beyonce statuette I got from your store, sitting on my windowsill. Then I giggled, and plotted funny places to put it where my sweetie would find it, with obnoxious post-its. So even when life SUCKS, there can be good moments 🙂
I appreciate you sharing and so beautifully putting into words what I only feel. I live with fibromyalgia (very similar symptoms) and sometimes it’s just so damn hard. After almost 20 years I’m done with it, but I still remember how I used to feel. I regularly dream of running free (I was a runner) and I wake up even more depressed. Thanks for sharing a bit of your pain and frustration and Victor’s words – I love Victor’s words. My new manta is: it might be easier but it wouldn’t be better. Hang in.
That you have the fortitude to write your way through this is awe-inspiring. I hope all this love coming at you gives some peace, even if only a little. You make life better for all of us but of course this isn’t about us–it’s about you. Be where you are, go through what you need to, but please come back soon. Sending you hugs–gentle ones–and big sloppy kisses.
I know so many people with RA and I have an autoimmune disorder as well as osteoarthritis quite literally in every joint, so I’m familiar with the depression and ongoing pain. Probably not as bad as yours, but comparison is not relevant anyway. I’ve certainly said the same thing to my husband, who responded kindly, but not as succinctly as Victor did. My thoughts are with you. Soon you’ll put one foot in front of the other and it won’t feel so bad, and finally, finally, you’ll feel normal again. And we’ll all be waiting to read about your latest adventure or see your newest taxidermied companion or laugh at Hailey’s smart-alec comment (she is really sophisticated for her age). Until that day: {{{{{Jenny}}}}}
Thank you. My stepmother has rheumatoid arthritis, and this helps me understand her better.
Thank you…just thank you
This post really resonates with me. I am so sorry you deal with such a horrible, painful, debilitating condition.
I felt all those feelings you’ve described when I had an extreme hormonal pregnancy rash flare up a few weeks ago. Although I feel thankful that it’s all I’ve had to deal with (your condition has really put mine in perspective), I really did feel useless, helpless (especially as it took over two weeks without the right treatment or a diagnosis) and like I was a massive drain on everyone when I’m supposed to be all upbeat, funny and fun to be around – not to mention ‘glowing’ and all that shit. I felt frustrated, unproductive, unattractive (the scarring is a nightmare) and like a failure. Finding out it won’t go away until the birth (and then scaring myself on google with stories of women who never got rid of it ever) really got me down – the fear of another flare up is always in the back of my mind.
I don’t know if I have any advice to give – I’m still working through my emotions – but just know that by posting this, you made me feel like I can get through this temporary situation because what you’re getting through takes so much bravery and strength. Thankyou for inspiring me – I was having a down day, but I’m going to fight harder.
I hope the down days clear up for you soon x
I have Psa. Very similar and it truly sucks. I hope your flare goes away soon xx
I love you Jenny.
I love you when you’re silly and I love you when you’re bat-shit crazy, but I love you best of all when you’re open like this. Thank-you. I really needed to hear this right now.
It’s safe to say that I’m coming for your husband. Once you’re feeling better, of course.
I too have tears in my eyes reading your post; few people understand when you’re in pain and they can’t see why. I appreciate your sharing with us because it will teach people some things they don’t know or understand. Hopefully it will open some people’s minds because they enjoy everything you write. Have you tried any guided imagery during the bad times? You might want to look at Healthjourneys.com. There are many recorded sessions that could be of help to you. They help you fight the bad tapes in your head with good messages instead. Belleruth Naparstek is an amazing woman. She’s done a lot to help people, including soldiers with PTSD and helping them avoid PTSD. I hope this bout will pass quickly. Keep the faith; we keep it in you.
Ack. RA sucks rocks. Feel what you feel, know that you are loved (especially by Victor) and then get up and move your body again when you can! Don’t let these moments or the darn disease define you. We are all better than the stupid, messed up antibodies that think it is fun to fuck with our bodies every now and then!!
Sending you much love and prayers. This too shall pass. Even though it feels like it won’t. Feelings are not facts. The fact is you’re an amazing person who is in a shit load of pain, but the pain will eventually leave your body. I’m hoping your thousands of fans who are sending you tons of love and healing prayers lifts your spirits. xo simone
Jenny, Thanks so much for writing this! I sometimes have days with my depression where I wonder if it wouldn’t be better for my family without me. I never say anything. Sometimes I don’t think my husband even knows how depressed I am. But I love my good days with my family, so I do my best to tough it out and ignore those thoughts. Seeing that you go thru that too… well, it helps so very much. Thank you. I hope that tomorrow is filled with sunshine and no clouds and that you have all the strength and energy you need to be you!
I’ve never commented on one of your posts before, but today I felt compelled to. I don’t share your pain, but I do share in the black days and self-doubts. For me, it started when my infant son died from an inherited disease called spinal muscular atrophy. I gave him the genes that failed him, and then I couldn’t save him from his own body. I was wracked with guilt and filled with self-doubt. I quit my job. I refused to get out of bed. I tried to drive my husband away – to someone who would be easier. Then, one day I realized that, as you said, easier isn’t better. I had a wonderful son, who is now my guardian angel, and he came to me for a reason, which one day I hope to understand. I have a husband that I love who loves me when I’m at my worst. I am stronger than I give myself credit…and you are too. Sending you light and laughter.
Oh, Jenny. If I had a genie in a bottle, I would wish for you to be healthy and happy. It doesn’t seem fair that you provide SO many of us with laughter and happy tears and yet, you have to suffer. =[
Feel better soon. *hugs*
? M
I know EXACTLY what you mean, what you are going through. I KNOW that pain and the deep aftermath. I’ve had people (doctors *and* family) say to me “it’s all in your head.” Well OK then…fix my head!!!! Fuckers.
I’m sending all the positive energy I can your way. You will climb back up. I know. And I also know just how hard it is to remember/believe that. (((Big Hugs)))
That ? is actually a heart in disguise. <3
Just gotta take it one day at a time. I’d offer you a cold one, but seeing as this is the internet and not meatspace, all I have to offer are some words of encouragement and support and a rain check on the beer.
Here’s to you getting better, girl!
I’m sure you’ve read a thousand suggestions, and mine may be no better, but as someone who has said those exact same words to her husband after her 2nd cancer diagnosis (what can I say? I’m hard to kill)…your words spoke to me tonight.
An odd, but completely harmless alternative therapy for circulation problems, chronic pain, and arthritis is called “Earthing”. It’s simply grounding yourself so that your body is at the same charge as the earth’s, with the theory being that it returns you to your best healing state. I bought the sheet that lies at the end of my bed, and small wire connects it to the grounding plug in a nearby outlet. There is no electricity…it’s just connected to the grounding plug. My feet lie on it while I sleep, which is exactly the same as me standing barefoot outside. I started 12 weeks ago, and everything I read in the book “Earthing” has held true for me. My severe neck pain from an old injury is gone. I’m able to get out bed every morning with almost no hobbling (lifelong leg muscle problems I inherited from my Dad). My Dad started at the same time I did, and his pain is gone as well. No one is swearing it cures cancer, only that it gives back a meaningful quality of life for people with certain chronic health problems. The book is by Clinton Ober, Dr. Steven Sinatra, and Martin Zucker. You might find it interesting. I tried it because it couldn’t hurt me, and heck, anything is better than trying one more pill. Best wishes.
First of all. I love Victor. Second, thank you for describing how it feels to have a flare up of many chronic diseases and conditions. Why do our brains do these things to us???
I’m with you- you wrote exactly what goes through my head when I have migraines. You are so afraid it won’t pass- or they will become more frequent. Then you wonder why you can’t “will” it away. I’m not even a control freak… but it feels like there must be some way to improve yourself in order to avoid it. You are wonderful- I know this already- as a new reader… hang in there until the sass kicks back!!!
feel better!! ((hugs))
feel better soon.
you are brave , and wonderful and clever.
thank you for your honesty and brilliant writing.
Ngaire
x
There are so many times that the easier thing is by far the NOT BETTER thing to do. I have PMDD that can be pretty severe. I’ve come to recognize that when I start saying to myself, “What is even the point? Nothing will ever get better. I am not good for my family,” that it is time to take some extra good care of myself. I think it is so smart to realize that your brain can mess with you and to remember that what it is telling you is not true, even though when you’re thinking it, when it hits you, that is all that is real in the world for you. I feel fortunate that I am able to come out the other side after short periods of time. (Faster if I remember my meds.) I’m glad you have a light at the end of the tunnel too. All my love to you.
Jenny, I truly hope you’re feeling better after reading all these wonderful affirmations. Another FB friend found the Beyonce post today and reading it again reminded me why yours is the only blog I subscribe to. I think we all can relate on some level, whether it’s fibromyalgia, chronic fatigue, RA, depression/anxiety, chronic pain, or a chronic stomach disorder (I keep telling myself it keeps the dress sizes in check, so what if I’ve spent 1/3 of my life horribly nauseated)–when conditions flare up, it’s awful. And the depression, the “I’m never going to feel better” thoughts and the after-effect agoraphobia that go with it are incredibly debilitating. But I take solace in the fact that I’m not alone. Almost everyone out there has something that they deal with, whether they’re willing to admit it or not. We’re all in this mess together. 🙂 And who wants an easier life, anyways? Boooooring! God put us here to support each other and live life furiously happy, during the good times and the bad. So “WOLVERINES”! And I’m glad you’re on the last legs of the flare up. Hang in there!
::hugs::
I can’t say I know what the RA is like, but I’m bipolar and am definitely with you on the latter parts there. Good for you for being able to be so open.
I have “episodes” which are really a version of seizures as far as we can tell, but don’t tell the DMV. They disrupt my day and sometimes my life, but then they go away and I forget how strange they feel…until they come again a few weeks later. My hubby lets me nap and feeds me good food when I am having a flare. Some of these men deserve a little less mocking and a little more praise. Sounds like you have a good guy, too.
You keep writing and we’ll keep reading and laughing and enjoying the distraction for whatever ails us.
Jenny, just another follower to show how much we love you. *YOU* make *ME* #furiouslyhappy. Ever since Beyonce came into your life, you’ve been brightening mine quite a bit more. Victor, he said just the right thing.
My mom suffered RA from the time she was a young teen (amongst her other myriad of health issues), and I honestly don’t know how she dealt. Mom was probably the strongest person I knew, with the highest tolerance for pain. I recently had bursitis in my hip, and it was agonizing, I had to miss work because of it. I was laid up on my couch for 2 days almost, unable to move. Mom, she always kept going.. and she had pain on a daily basis. It doesn’t do much to boost my already self loathing low self esteem issues to know I was such a *wimp* in comparison to mom. The depression, that is another story altogether. I’ve never been diagnosed, but I definately can relate to your feelings. I too, have been there, plenty. And yes, while it would be easier, it most definately, would not be better, if we all just.. gave up.
So, positive thoughts coming your way. I hope the pain subsides soon & you get a handle on the depression again. You have a clear impact on so many lives, you have touched many, all over the globe. Hoping very much for you to feel all kinds of better, soon.
Oy. Yes, there are plenty of us out here, and I’m right where you are right now, except from fibro/Sjogren’s flaring in the stupid 107,000F degree heat. The worst part is knowing that you’ll feel better soon, but you can’t remember what that feels like from it having been so long since you’ve felt decent, and then kicking yourself in the head because you know you shouldn’t be so depressed. But it happens. Repeatedly. And that’s why the world needs more giant metal chickens.
Not sure if you know of chronic illness cat but there should be chronic awesome metal chickens too, just because. Or at least towels for everyone. http://chronicillnesscat.tumblr.com/
My friend linked me to this post, because she knew that I would feel some understanding and a bit of relief that there is someone else out there like me. I have RA, Fibromyalgia, and a damaged kidney. The month of August has been H-E-double hockey sticks. What you described is exactly how I feel sometimes. My husband works a ton and still manages to help with our two kids, do the shopping we need, and get me to the doctors. I told him recently that I would understand if he wanted a divorce, because who wants to live with a partner who is permanently ill. He responded much like Victor did and told me that I make his life better and all he ever wanted was to be with me. So I try to just remember that when things are bad.
Thank you so much for posting this. It made me take a deep breathe and pause for a moment to remember that I’m not alone in the struggles in life. I hope your flare ups are less and less. I’m glad you have a loving family to help when it’s bad. Try not to be so hard on yourself, but I know that’s so easier said then done. *gentle hugs*
Jenny- I suffer from Fibromyalgia. People don’t really ever understand what that means, unless they also have it. Reading your post- you perfectly describe how it FEELS to have a flare-up. Very moving, and glad to know that someone else out there understands what I go through as well. Thank you for posting.
I’m so sorry you’re going through this.
A very brave post and an important one. My daughter, who just started blogging, has been reading your posts and archives and reading out loud the ones that make her laugh out loud and she just has to share. So I started following you too because, quite frankly, the last year has been hell and I could use a laugh.
Yet this reminded me that we all have those dark moments. We have to hang on through the dark days and you writing about it makes the rest of us feel we are not alone.
I don’t have RA. I have a much less severe form or arthritis and, as a gift left over from sparring with leukemia, I’ve got a mean case of fibromyalgia. Whatever the cause, the dealing with it is a pain in the ass.
But days like this aren’t the only days we have. There are good days. And yeah, things might be *easier,* but they wouldn’t be better. It can feel like it — God, can I feel like it — but too many people love you and another hojillion people think you’re literally crafted from the stuff of awesome, so hang in there.
I’ll be looking forward to your next round of pwning Victor with a giant metal chicken or a ginormous baby elephant or something with poop larger than he is tall. But tonight and tomorrow and however many days it takes, get the rest and care you need. ‘Cause you’re definitely worth it — and I barely know you. Those closest to you know how true that is beyond what I can convey in a comment. Take care and feel better.
Jenny, sending you as many good vibes as I possibly can. <3
I have PTSD and your blog (my wife make me listen when she reads it) makes me laugh, then it isn’t as painful (the PTSD, not her voice). I wish Victor was funny then you’d know what I mean…
Just want to add to the chorus of love. You bring joy into this world, and it is a much better place because of you. Thank you.
Your bliog has given my son and I some major full belly laughter. Thank you for what you do.
If you follow the link below to Dr Courtney’s face book page, you will see a link to a 15 minute film he recently posted.This movie is a game changer for people living with chronic pain, folks who don’t like the side effects of pain meds. I sure do hope you find some relief.
Best regards,
B
https://www.facebook.com/profile.php?id=1303971270&sk=friends
Hang in there. Please. We need you.
Thank you for telling the truth, instead of what you guess people might want to hear. I am appreciative of the fact that you exist.
I don’t know what the opposite of appreciative is, but frustrated, disappointed, angry, hurt – none of them *quite* express my feeling when I am reminded that you live through misery, even if it is periodic. It’s Not Right, and yet, there it is. I guess one way to say it is that I wallow in that feeling of wrongness on your behalf. Willingly, because I value you; it’s awful when someone (you in this case) feels guilty that others are hurting with you [even if it’s a greatly-reduced hurt], when it’s taken on willingly.
Whenever you’re tempted to feel that, remember what it’s like when you’re insisting to someone else that you’re glad they shared their hurt with you, and remember that’s how we feel for you.
yes. i get it. i don’t know about your brain but MY brain is like a toddler. it plays in the blue water then tells me about it. i have learned that the only way to deal with it is to say “thanks for sharing but we aren’t going to play in the blue water… we are going to play over here now…” then i start doing/thinking about something else. it is a conscious effort and you have to keep after it because the moment your back is turned… BAM. it’s back throwing paper in the toilet and making a mess in the blue water. i get where you are coming from and my heart goes out to you. i hope the pain gets less and less… <3 big hugs <3
Do you know just how amazing you are? Truly Jenny, as much as I love your funny posts, posts like this that show your strength and resilience just impress the hell out of me.
Victor rocks!! It’s obvious we all need you for a good laugh. No one else looks at the world in the way you do and no one else could bring stuffed animals and metal chickens to life like you. Who else could get Wil to collate paper? You are irreplaceable. Feel better! Sending virtual pain relief your way in any form you prefer.
Sorry for your pain, I totally understand what you are going through. I have Fibromyalgia and an Auto Immune Disease and I have spent many nights blogging about them. I hope you feel better really soon, I know where you are coming from. p.s. you not joking around is absolutely sobering. Night, Jenny. Take good care.
Jenny,
Few things in life can be as exhausting and disheartening as the onslaught of chronic, debilitating pain and finding the right way to manage it. Keep your mind focused on what you know in your heart…this will pass. It always does. It always will. It’s the time spent in between really bad and better that truly sucks. Strength to you, my friend.
@Paula, I totally agree with you! Laurie F.
Quitting might be easier, but it most certainly would NOT be better. You are a ray of crazy, sarcastic, zombie Jesus-obsessed sunshine in my otherwise bleak week. Not putting pressure on you of course………. Shit. If only Nathan Fillion could make a dramatic entrance and offer a picture of himself holding twine. Although, I haven’t been able to look at him the same way after he played an evil, woman-hating priest on Buffy.
How about I’ll just say I love you?
It’s so hard to hear when others are in pain but amazingly, reading your post provides comfort that we as humans are never alone in our journey through life and the joy and pain that are a part of life. You clearly have a lot of love in your world and the perspective you have in conjunction with this love will get you through the darkness. Tomorrow will be brighter, you know it will.
RA is such an awful disease! Thank you for your honesty. Hope there are much better days ahead!
I’m so sorry you’re in pain, and I really admire you for sharing your deepest thoughts on the dark days. Hang in there…
I just wanted to say thank you for writing this post. More than it just being a reminder for yourself, that was definitely a post that helped be a lot. It’s nice to know in life that you aren’t the only one who has feeling and experiences like that, and it’s great to hear someone overcoming it. I now have a post-it on my computer screen that says “Quitting might be easier, but it wouldn’t be better.” Thank You.
Lynette
Jenny, look at the outpouring of love and support. That is the key to winning the fight against RA. When you feel like giving up, you can look back on all of your tremendous writing and know that the world would definitely be worse off without you. Chronic pain is so debilitating that I couldn’t believe how badly it turns your world upside down. I hope you don’t have to reread your post for a very long time. To the world you may be one person, but to one person you may be the world.
Sometimes being the courageous, strong woman you are isn’t enough, and that’s when love takes over and heals the part of you that needs to know how important you really are in your world. Hope you’re on the upward swing.
My sister and I need to clone Victor. Seriously. Where did you ever find this man anyway? I mean, I know why she is having difficulty finding a “Victor” (her location), but I live in TEXAS dammit!! 😉
Jenny… my heart goes out to you. I hope that knowing there are so many people in this world who value and appreciate your presence helps to give you continued strength to push through these trying times. Hope you are feeling better soon. xo
My mother has RA. She started acupuncture and is doing much better (no advice, just a fact for her).
I love you, you rock.
I’m sorry you’re in such pain. I hope you feel better soon. Yay for Victor.
Jenny – Do you see how many fans you have? Certainly you are loved. You make us think and you make us laugh. You will get better.
Get out of my head!!
Thank you for putting into words something I’ve felt inside for years. No RA, but nerve damage in my back that likes to “flare up”. Apparently that phrase comes from the feeling that, *maybe* if I light myself on fire with a road flare, the pain will dull down a bit..
I love you.
You’re my hero.
You don’t give up & I won’t either. Deal?
Change that to psoriasis and I could have written that
Everyone is celebrating…life passes. I do not have RA, but I have suffered serious bouts of depression and panic disorder. The life going on without me, the emotional disconnect with people and events…so crappy. But, I’m with you, Jenny. I know the dark days and the puking, pooping panic is only temporary. Breathe the next breath, life is still worth it even if it doesn’t seem possible in the moment. Misery loves company…and we can hang out for a long time, girlie.
One thing you’ve inspired me with in the short time I’ve read your work is that the internet is made of people. It is, Jenny, and we’re all here, praying and thinking good thoughts over you.
I have depression and anxiety (which makes me wonder if I will someday be a successful blogger like you!), and I know about the bad thoughts. It’s quite convincing to listen to your own insecurities when you’re screaming them at yourself.
Listen to us instead. You’re beautiful. You’re strong. You’re hilarious. You’ll be better soon.
Peace,
Your friend Brian, from Popcorn Day
I’m so sorry you hurt & are going thru this BUT PLEASE PLEASE PLEASE do NOT let a doctor put you on Humira……i spent 9 months with TWO paralyzed hands as a side effect, as it states “numbness & tingling of limbs” is a potential risk. The treatment is worse than the disease.
It may be easier for you, but you giving up won’t be easier on your family or on the rest of us poor slob readers. That’s not to say that there aren’t moments when you actually know giving up is the real answer, but I suspect you know this isn’t one of them. Besides, if you give up, who the hell is going to make me cackle like a mad woman at the office. I’ll have to go back to being normal and how boring is that? Nope. It’s not your time to give up and that is a purely selfish ( and obviously shared by many, many others) position. So there.
*delurk*
(((hug)))
*relurk*
Sending healing energy, Jenny…
This brought a tear to my eye- pain is no laughing matter. I know my world is a better place with you in it! Thanks for reminding me how fragile we all are. Chin up Princess and remember to breathe. This too shall pass. Smooches
My daughter, who is 14, has JIA. We are currently doing pharmacological and physical therapy. She walks with a cane. I more than understand your pain.
You wrote this post to remind you how much that man you married loves you, and I say that from his point of view, not yours. That love happens only once in your life. I got lucky enough to find it and so did Victor, and if he is anything like me, he would take your pain instead of you, without a moments hesitation.
My dear, sweet cousin, who was more like the sister I didn’t have, had her first RA attack when she was 16. She always marched on and pushed through it, although I know there were days full of misery and pain. Those days, she relied on her parents and two sisters to help her make it to the other side of the pain. The agony of what she endured is unimaginable to me. She died, while pregnant with her first child, three years ago. It has never been said, but RA more than likely had something to do with it. I miss her dearly. Take care of yourself. What else can you do than be honest about the pain? We all love hearing from you, reading your life, and are more than happy to wait a few days while you do what you need. Wish I had something funny or witty to say to make you smile. Just know you touch so many with your honesty and perspective. Feel better.
I think all of us with RA have been there more than we’d like to admit. On the flip side, yesterday I bought (and rode, for the first time in 15 years) a bike, on the promise that I’d have good days in the sunshine with my family, to balance out the grey days with the black dog.
Hope you are feeling better in mind today, if not in body.
Love and hugs to you, Jenny. I’m terrible at coming up with eloquent statements, but I still wanted you to know that even when you’re in your darkest moments and don’t necessarily realize it, you are SO loved and so important.
*hugs*
You are amazing.
So, I am awake at 2:23 in the morning because I am in agony and I am tired of bouncing from doctor to doctor without a diagnosis. I think your post sums up exactly where I am, and I think it was exactly what I needed to read at this very moment. Wow.
All I can think of was how lost I felt when Nancy W. Kappes, paralegal passed away. Please don’t think for one second that we don’t need you. Because we do.
Thank you. You just helped more than I can express. I know it’s really stupid of me but I really thought I was the only one to have these crazy thought of being a drain and maybe myy family would be better off w/o me and maybe it’s all in the head, and maybe such a faulty specimen as myself was never supposed to survive… (Don’t have RA though, I have this condition that makes me catch every chest infection conceivable and get pneumonia.)
Sending massive amounts of love and good vibes your way… er… not THOSE kinds of vibes!
Hate that you have to go through that. Don’t know how different it was, had the juvenile one. My brain edited itself to forget those 6 weeks. Haven’t had it again for nearly 30 years, so I’m luckier than I have any right to be.
I’m sorry, it sucks, and fuck that shitty agony. Pretend i said something really damn useful and painkilling right here. I’m talking painkilling like the really good chemicals.
Imagine if every single one of these commentors could take the pain away for just one hour.
How amazing would that be?
xx
I’m sorry. My pain is from a different source, but I can identify with every word you wrote. I’m not sure if this will make you feel better? Well, at least you will not feel alone in the fight:
http://www.TwentyFourAtHeart.com/twenty_four_at_heart/2011/08/facing-reality.html
It’s candid, balls-out posts like these that make you that much more extraordinary.
((HUGS)))
I appreciate your honesty. I do believe that we need to have these hard moments in life so that when we have gotten through the thick of it we can truly enjoy the furiously happy moments. <3
Hang in there, girl. Not only have you got all of us rooting for you, but you have the most amazing husband. Rest, recuperate and come back with another bloody chicken story for us all.
The world rocks and is a hell of a lot more fun with you in it. And if I feel that way as only a reader of your hilarious blog, I imagine your husband, family, and friends feel that times a million. I hope you feel better soon!
Feel better soon, Jenny…and know that those of us who don’t have the courage to talk about the hard stuff are so proud and grateful that you do.
It’s not remotely the same, yet in some way I think it’s analogous: on a winter night two years ago, I found myself in a gas station in the middle of Kansas, apparently looking the way I felt, which was destroyed. My sister had died. I had to get home — still hundreds of miles and several states away. I hurt to the very core of my being. I was having trouble with the simple act of paying for my lousy coffee. A complete stranger stopped me and said, “Breathe through this and trust in tomorrow.” I wish I knew what the hell that means, but I don’t. Nevertheless, it really helped (and wasn’t even completely creepy). Maybe you’ll understand and maybe it will help you too.
Have lived with RA since 1978; your blog entry nailed it. Now, there are other health issues in my life and I have to laugh when I hear myself saying, “I wish I only had RA.” What kind of wish is that? If given the opportunity to operate without my body, I would jump at the chance! I would also save a bundle on clothing and food, I suppose. Hang in there and keep posting. Thanks for sharing this. As others have said, it does help to know other people go through the same thing. We are not alone, even though we often feel as if we are.
Jenny, people come to your blog for the crazy, funny stuff but we stay because of posts like these. I found your blog via some roundabout connection with The Happiness Project which I’d been reading to try to gain inspiration for making some changes in my life. However, I just couldn’t connect with THP – she seemed too different to real people. (Plus she calls her husband The Big Man which disturbs me for SOOOO many reasons.And it’s boastful.) So I found your site and read through every post and every link to your other articles and it helped me through a difficult time. Your funny posts have so much more meaning because of these serious posts and you know that you have inspired and comforted more people than you know. ((hugs))
I think it’s time to send Beyonce in to kick RA’s ass. He could totally do it. Beyonce loves you. And so do we. Take care!
I have a few friends who suffer through pain that I don’t understand. Thank you for bringing me a step closer through your post. I’m glad you are past the pain and I have faith you will work through the depression to come out the other side bouncing again. Stand up to the dark side and scream out your worth. I want to give your husband a medal … Outstanding support!!!
I love you, Jenny and I am sorry you ever have to suffer.
I know this is something you will probably never actually read but I am going to post it anyway. I have never seen such a wildly popular blog. EVAR. The first thing I ever saw of yours was Wil Wheaton collating papers and I read everything since. I found you funny and smart and so many amazing things I want to be. I joked in my blog about someday being pretty enough so you would notice me and I repost so much of your stuff my friends think I might be stalking you.
I went back and read some of your older stuff and I cried. I shared it with my friends and they cried.
I am so sorry for your pain. You make me cry. You are right, it might be easier but I think you are amazing. I know it doesn’t mean much when life is all pain and shit, but what you do matters. Please keep doing it. I need someone to be my hot woman blog crush.
Oh, and keep Victor.
My thing is comedy. I love making people smile and laugh with my stories and artwork because I know the positive impact of laughter on mind, body and spirit. So I’m stepping waaay outside my usual online persona to offer an uncharacteristically personal and decidedly non-humorous reply to your wonderful, heartfelt post, Jenny.
Your post brought tears to my eyes because I know. I understand–with all my heart and soul, I do. AS (ankylosing spondylitis) is related to RA. It creates godawful pain and systemic inflammation. It also causes bone fusion. It’s depressing and frightening to think of losing my independence, and to see my body twist and bend and become old before its time.
About twice a year I throw myself a whiny, maudlin pity party and I let myself cry–I mean an ugly, blubbery, snotty cry. I make bargains with God. I ask why me. I bitch and swear. Once I’m cried out, totally spent, I remind myself that I am a survivor and I’ll be goddamned if I’ll let this shit, or anything else life throws my way, get the best of me. Pain is just a roadblock it’s not my destination.
Jenny, Kira and everyone else here–you are stronger than you realize. You are worthy and you count. You have skills, talents and gifts. You have a purpose. You are here in this life, in this world to make a difference–and you do! We all matter. We all count. Each of us is here for a reason that no one else can fulfill. None of us is insignificant. Each and every damn one of us is truly special. And the world would NOT be better off if any one of us were no longer here.
My younger sister took her own life when she was in her 30s. Years later, the pain and heartbreak is still beyond words for the rest of us she left behind. When I watch a sunrise or sunset I think about how my little sister will never see those again; about how very much she has missed and will continue to miss by not being here. She missed out on the internet, on email, on cell phones. My God…if only she had waited, how her world would have opened and changed! But that won’t ever happen. I am deprived of the sound of my sister’s laughter, her corny jokes, our long phone chats. Her children are deprived of their mother. Her husband is a broken man.
There is always, ALWAYS light at the end of the tunnel. No matter how hopeless, how bleak, how agonizing, it WILL get better, things WILL improve, and you need to be here to experience those wonderful, joyful up times because you deserve it. I can’t tell my sister those words anymore…but I can tell all of you. I care. Stay here. Please.
Hang in there, Jenny. It’s heartbreaking to read of so much pain here but at least there is a circle of comfort that seems to be swallowing everyone up. Pain is never easy but do what you must to get through it and those that love you may tire but I’m sure they wouldn’t trade their position so close to you. Prayers for you.
Thank you. Not the same hell that you’ve been going through, but after a month of broken feet (two of them) and crutches it was determined that nope, not healing. So now in a wheelchair. Which doesn’t fit places. Like the bedroom. Or the bathroom. And even though people keep reminding me that bones heal, the fact that my bones just haven’t been mending themselves has been making me various flavors of depressed, lonely and stir crazy. And odds are high that I’ll keep feeling this way, trapped in the house, for at least another month. And your post today – more than all the “bones heel, it won’t be forever” friends have been say – made me feel that what I’m feeling is normal. And that makes me feel like maybe I will be okay. So thank you.
” Maybe easier – but not better.”
A lovely way to say: “From the bottom of my heart – I love you.”
Crohns goes much the same way for me. The first, savagely acute stage of a flare is really the easiest bit to cope with. The months of getting-it-under-control are harder, and harder still is recovering my pre-flare self – usually just in time for another flare. Good thoughts to you.
First time commenter – just wanted to add my support and also to point you in the direction of a friends blog
Lene has similar problems and blogs about it daily – you may already have found her but just in case you haven’t here she is
http://theseatedview.blogspot.com/
Hugs and mojo for a quick return to a pain free state
Wow. I’m lying in bed waiting until its time to take my pain meds and reading this post. I have pain everyday and had to stop work 2 years ago. Everyday is a struggle against the black thoughts. I often feel the same as you about being a burden. I never go to my daughters sports events or anywhere too far from home. Yet my husband smiles and says the same, that they need and love me and I’m so grateful. Bless you, we all love you too. 🙂
I’m so sorry your going through this. I wish you the very best recovery and Victor sounds like the perfect partner to have when this is going on.
It will get better and life will be funny again. Until then, breathe, find other funny things (internet is good for this) and borrow other people’s humour until you can find your own again. Overall I really hope that you can see the future easily, the part that’s not full of pain but rather full of creepy monkeys and giant metal chickens and know that there is way out of this. I don’t know much about RA, but I do know depression very well and it sucks especially when you get stuck in a rut and think there’s no way out. Breathe. Believe. Love and live.
Hope you feel better soon.
That “broken glass inside my joints” feeling, and the accompanying handicaps on movement and logical thinking skills, are enough to make Mother Teresa weep. And you’re just like her, only better. You are, in fact, rock hard [even if the rock is in tiny pieces right now].
If you can laugh without dying, get your Schadenfreude on and watch videos of people falling over and stuff – I know one oughtn’t to feel better after that sort of thing, but I usually do.
Oh Jenny. My heart cries for you. I simply can’t imagine having to deal with that much pain. It may be hard to do at a time like this, but try to keep in mind the many blessings that make your life worth living, not the least of which are a beautiful daughter and wonderful husband who clearly love you. Thank you for sharing your doubts, I think that it helps a lot of people know that they are not alone.
I have systemic disease, and had to make a trip to the hospital on Thursday. On the way there, something in someone’s yard caught my eye. I looked over, and there was a giant metal chicken.
On the way home, riding down a rural highway, we passed a landscaping business that sold lawn ornaments. Lo and behold, countless giant metal chickens on the side of the road.
Tell Beyonce and her cronies to stop stalking me.
And please get well soon my dear. <3
I understand more than you know!! Hang in there and I really hope you feel better soon!! Hugs!
I’m feeling ya. Thanks for writing this.
I hope others will read this post and gain the courage they need in their own dark hours. Thanks for your gripping honesty.
I am sitting here this morning crying my eyes out because a week ago, literary, my husband was in that dark place that you are in for his severe back pain. I was able to stop him time before he did anything, thank goodness, and he is now some place safe getting the help he needs but it keeps running through my head what if… God bless you both for the pain you live hrough. It kills me seeing him hurt that way and knowing there is nothing I can do for him. Please know how many lives you touch on a daily basis for just being Jenny. And none of us would be the same without you in it. Please take care Jenny. And when you are feeling up to it give Victor and Hailey hugs for me.
You are amazing and your blog makes my days brighter. I’m sorry you are in a bad place and wish I could take some of your pain away. Keep fighting, it’s worth it.
Sending you good thoughts and wishes for a speedy recovery.
Hang in there sweetie. You have a ton of healing, comforting vibes coming your way. Wish I could deliver them in person.
you’ll be fine. worry not.
I love Victor almost as much as I love you! I can so relate to all that you have written and I don’t have RA as an excuse. I hope one day I have the courage to write about the similar lies my brain tells me, and about the far too many days I sit and listen. And the affect that has on my beautiful, loving and forgiving family. Get well and rest in Victor’s love and compassion.
Nicole x
I love Victor. Hope you feel better soon.
Hi Jenny, I hope you feel better soon. For what it’s worth you’ve brought me joy on many occasions and I look forward to many more!
And this, you amazing talented wench, is why you are The Bloggess. Rapier and clinical and brutal and honest – therapy at its best. (Bet you helped a heap of others who suffer as you do, just with this single post).
Gentle hugs from afar,
🙂
BB
Dearest Jenny,
I’ve just read this post and I am in tears. I too suffer from chronic pain that won’t go away despite my young age and ability. My sister, who is a physical therapist, has been trying to help me for years to no avail. But, I did want to let you know that I bought her the best birthday card ever….we were both huge fans of the Beyonce the Chicken post. So, for her 30th birthday, I bought her a Beyonce “Knock Knock Motherfucker” card. Inside, I wrote, “Happy Birthday! 30 Years is Big Metal Chickens!” We Hee-Hawed for many many minutes, tears streaming down our faces. I know you’re in pain, but just know that you’ve made two lives better and a lot more humorous just from your existence. Stay strong!
P.s. “Douchecanoe” is my new favorite word.
im really sorry you have to go through this. I won’t say that I can imagine what it feels like, because I really can’t. I can imagine the little lies your brain tells you though, I guess we all have those from time to time.
Just remember that if people really would be happier without you, they wouldn’t be there for you. People are way to egoistic to hang around people they don’t like 😉 That sounds a bit jaded, but I find it to be true.
I can’t help you get through these horrible moments, but I can tell you that every time you post, it makes me smile. It also makes me laugh out loud a lot and share it with other people to make them laugh aswell. You really have a gift and I’m glad you share it with us. I only wish I could write something to make you smile now, but I’m not that gifted.
I’ll just try to send some good vibes your way, and hopefully, you’ll feel yourself again soon.
Thank God for the NEXT day!!! I have suffered with migraines for almost 20 years. I LOVE …….NEXT DAYS!!
Thanks for this site as well. I love WORDS more than NEXT DAYS!! T:)
Chronic pain sucks. I have a seriously jacked up knee. 3 surgeries in less than two years and all my surgeon can offer me at this point is lots of narcotics and a grim future. (Knee replacement wont’ fix this mess) The pain is unrelenting. I know all about going into the bathroom to cry. I feel guilty that my teenage sons have to prepare and deliver meals to my bed because I just cannot stand on my leg for another minute. I feel guilty that the most of their life has been spent watching their mother battle chronic pain… and not just achy, sore pain. I mean pain that takes my breath away. I know they worry about me at a time when their lives should be carefree. They have said they wish I could be pain free for my sake, not theirs, that I bring so many positive things to their lives that they are willing to overlook the times I curl into a fetal position and whimper. Seriously, while I would not wish chronic pain on anyone, especially a mom, I think my boys have gained from this. They are kind, compassionate, giving, nurturing young men. They think about the needs of others. They have also learned from my tenacity through all this. They know when it gets hard, you push through. They have learned it is okay to ask for help when you need it. They have learned that there are wonderful people in the world who are willing to help. (Those last two were also big lessons I had to learn.)
As a pain sufferer, I know the demons that follow you around on those bad days. I tell myself that I could just be so happy if the pain could be “cured”. Knowing I won’t be able to coach my daughters’ team sports, go to amusement parks, go camping wiht them, etc., kills me. I can live a limited life, but I hate that I hold my family back. Try to focus on the things you can do and the funny, caring woman you are. Your post helped me feel a little less alone. Thank you!
I can’t say I know exactly how you feel, but I’m sympathetic because I have had arthritis (or what doctor’s though was arthritis) when I was younger. Three finger joints would balloon up, as well as my right knee and ankle. Mercifully, it only lasted a year, but my memory of it is 30 years fresh.
What I do have to contend with now is chronic ear pain. Again, I’ve been saved because it’s only brutally painful when I lay down to sleep or rest on the couch. The weight of my head pressing against each ear makes it hurt like the devil, knives shooting in either side. I’ve always said that if I had that kind of pain during the day, I would be on disability. But I’m grateful it only happens when my head is on a pillow, because it means I can remain gainfully employed and not cry all day long.
My husband may know that I’m in pain, he can see it on my face, but i don’t talk about it. I know what you mean about feeling like a drain. He doesn’t ask “Ears?” anymore because he knows the answer and I’m sick of saying “Yes.” So I live with it and thank God I can walk, my brain works most of the time and I suppose there are worse things in life. That is how I cope.
I feel for you. I really do.
My 3-year-old daughter has JRA and my husband has psoriatic arthritis…his flare ups are epic. I’ve spoken the same words as Victor…yes, it would be easier (maybe) but I would be miserable. My wonderfully flawed, scared and handicapped family has sculpted and molded me into a better person, wife and mom. Never have I felt more blessed and loved than I do when we’re coming out of the dark. Because that’s where we’re at sometimes too.
God, I am so with you. I just recently suffered a horrible, terrible loss and I am so depressed about it that I don’t even want to be around myself. My only hope is that the depression and pain will sit beside me instead of being the first thing I have to wade through on the way to the bathroom in the morning.
I imagine that the grief over your own health feels the same way.
I heart Victor. And he’s right. My life is definitely better with your blog in it, infirmity be damned. Get better.
Bless you, Bloggess. You’re a much stronger woman than I am.
Mainly because I’m a guy, but whatever.
20 points to Victor. And a gazillion points to you, pookie. Especially if you do read this post again during the next dark phase and it helps. Or if we’re playing darts and you accidentally hit a taxidermied animal instead of the board. Either way.
To quote one of my favorite smart-asses (Olympia Dukakis in Steel Magnolias)…”that which doesn’t kill us makes us stronger”.
I’m so sorry you suffer like this, and hope you’re feeling like yourself again soon! <3
Hope you feel better soon…and what an awesome husband. My close friend has the same condition. It never ceases to shock her, the impact it can have on her everyday life.
Best,
Tina
Sweet Victor! Hope you feel better soon 🙂
Just be good to yourself. My mom has rheumatoid arthritis, it’s been disgustingly humid in Phoenix this summer and she’s been miserable much of the time as a result. It’s horribly depressing for her, too. You’re not a drain, it’s not all in your head, no one would be better off if you weren’t around (I’d be much worse off and I don’t even know you), and bad shit frequently happens to people who really, really don’t deserve it. None of that is helpful right at this moment, I know. Do keep breathing. We’ll breathe with you.
So sorry about the RA. Since I was a wild man when younger, there are very few joints of mine that aren’t CATFU’d (completely and totally fucked up). However, in the late 70’s, a wacky neighbor, a conspiracy theorist, showed me an article about arthritis by a guy named Dale Alexander, the author of “Arthritis and Common Sense.” It seemed hooky but I had a friend try it. Too chicken to try it myself, you see. Three months later it worked. He lived and he is arthritis free thirty years later. In fact, my wife and I have given the article to many people. All were helped. I take it now, have to so I can play tennis. CLO is what I call it, but cod liver oil is the secret. Just a tablespoon. I take a swig at night before I go to bed. If you can stick with it, you will have great results. You will have to take it every day—forever. Go cherry flavored if you have a sensitive gag reflex.
Jenny, as someone who has fought depression off and on for years, I can say two things with certainty:
1. It WILL get better.
2. Your brain is not always on your side — don’t listen to it!
But you know both these things. I’m glad you wrote this post, and I love your blog.
xoxoxo
Sending you love and healing thoughts!
I have a disorder that and, while it doesn’t cause pain, it does have the symptoms you are experiencing. I know how crippling depression can be, and I know how easy it is to go to “the bad place” in your head that tells you to just take the step and relieve your family of the inconvenience of having to care for you. I also know the dread of not knowing when another attack will come, and the debilitating pain (though mine is emotional).
I have a slight knowledge of what you are going through and I want you to know I love you, sympathize with you, and would be lost without you because you are one of the funniest people I know and you have gotten me through days that would have been miserable without your giant metal chickens.
Take care of yourself.
Oh Jenny, I wish I could take it away for you, if even just a day. Those of us with chronic illness understand every word you’ve typed.
When first diagnosed w/ MS, I remember wtching my Hubby playing with our daughter and thinking, “they’d be just fine without me. I don’t need to be a burden on them.”
Depression can be such an evil bitch, putting those thoughts in our heads.
One day at a time girlie. YOU make this world a better place by being here and we love you and look up to you and we’re so very proud
Pain and suffering is not ridiculous and depression is a logical consequence. If we the internets only cared about you when you are feeling great and cheerful then we wouldn’t be worth having.
Sending you super strong healing thoughts (and I’m a nurse, so mine count more) and gratitude for your courage to be real.
Jenny, I recently found your blog through a tweet from Cakewrecks (yes, it was the Beyonce post) and immediately put it on my RSS feed. My colleagues began to wonder what I was finding on the Internet that could possibly be so funny (I didn’t say anything — my colleagues are not as whacked as I am). Your post this morning was something of a shock, but it only deepened my respect and admiration for your courage and honesty. There’s nothing else I can add to what has already been said — I only hope that our wishes and prayers help in some way, because you do matter to us.
OF YOU. Proud of you.
Forgot my last two words in my comment above.
Geez.
Thank you for writing your feelings. Healing energy coming your way, and hoping you are getting the rest you need. You are an amazing woman that has touched so many lives. Thank you for the humor that brightens my day, and thank you for being honest on your bad days. You have to be real to yourself and your audience – much gratitude and appreciation for all you write. Thank you. Anytime you would like Reiki, please ask, and I will send loving energy your way.
Do not listen to your brain and try your best to get through this flare. I know it’s hard my dad has suffered with this for many years. Hopefully the end of this round is in sight
I have an episodic chronic illness that leaves me feeling much the same way. It can be hard to keep sight of exactly what you articulate — that the emotional effects of a disease are just that, part of the disease. I hope that this flare passes soon and the next one is long in coming.
BTW, my family was coming home from a vacation to the beach and we passed a shop that sold recycled metal art. We had to stop to get a photo of the 2-story-tall metal rooster, it reminded me so much of your recent post.
Thanks for writing this. My mom has RA and i think i understand her feelings a little better now.
I am glad you wrote that post. Many of your readers are like me. We are experiencing pain and although we come here for a laugh, it feels good to see you are like us. I am not experiencing the same kind of pain as you, but for some strange reason hearing that other people suffer makes me feel less alone in my experience. Kind of morbid, but true.
Yesterday I had a horrible day. I blogged about it, because I wanted people to comment. I needed to feel less alone. I truly hope you have a better day today.
Thinking of you…..
I said a little prayer for you this morning 🙂
Jenna
Thursday morning I tried to wake my husband up and I couldn’t because he had taken 60 Xanax the night before. He has survived, but he let the voices in his brain and the deep depression seduce him into the lies that it will be easier and better. But here’s the thing, it’s not easier or better for those of us left in it’s aftermath. It’s a hell of a LOT WORSE and HARDER on those of us left standing. So before you or anyone else starts believing the lies, think about the survivors, the people who love you who will have to pick up the pieces whether you succeed or not. Life from the other side is anything but easier or better.
I’m sorry you are in pain. I appreciate your honesty in your thoughts and I can’t imagine the physical pain you are going through. I know it must wear you down. And I understand why you would consider the absence of pain a good thing, but to take the pain away is also taking the life away – a life that brings joy to so many people. You can’t do one without the other. I haven’t read all 300 comments, but I’m sure you have connected with someone even in this post that says “damn, that woman knows just where I am.” My thoughts and prayers are with you and I wish you a speedy recovery so you will be back soon bringing a smile to all of us. Hang in there Jenny. Life will get good again. And until then, if you have to, don’t worry about taking one day at a time, but just take one minute at a time. When you get 60 of those down, then it will be an hour. You can do a minute or an hour. Sorry for the book.
Dear Jenny,
the worst thing about pain is that it is invisible. no one else can grasp what or where you are at, and if you are like me, when the pain is gone, you are left thinking, was that such a big deal?
thanks for writing about this in your life. we your readers love all of you, your beyonce parts and your RA parts alike. you are a whole human being. when i got (?received) a malignant brain tumor 10 years ago, i had no idea what would happen. i lost a lot of myself just staying alive. i still haven’t determined if it was a curse or a blessing because it turned my life around. i’m very aware of the suffering of others now – and i was quite the self-absorbed bitch before. well, i still am. pain has a way of pulling you away from others.
i just want to say that what people are saying is true. you get stronger because what doesn’t kill us just pisses us off enough to want to live longer. and if we have our way, you would be here on the interwebz for all time. <3
Hang tight, Jenny!
The alternative is not better.
Having had my own sorts of dark moments where my husband has been a light, I commend Victor for putting it so well. We’re all here thinking happy thoughts that you get feeling right as rain very soon.
I suffer from RA, too, and absolutely feel your pain my friend! It DOES get better. Give Victor a big hug from me, because a man that can say the exact right thing at the exact right time is priceless. I hope that you’re feeling yourself again, soon, because you make MY life better.
That Victor is a-ok in my opinion. Sorry you’ve been feeling so awful – RA sucks ass.
This totally sucks. So glad the Universe sent you an angel (Victor). Know that we all need you!
Dear Bloggess, you are amazing. Your writing style rocks, the humor in incredible and all this while you battle RA. I really enjoy following you and was sorry to hear about the flare up. On the bright side I wanted to share with you that my mom is now in a medical study that seems to have some promise. Mom has been very damaged my RA over the last 20 – 30 years. Her hands are virtually non functional, surgery on her feet, knee replacement and then there is all that pain. I have always been so proud of her for efforts to continue without giving in, finding new ways to do things and trying to maintain her independance. Now after all that background the RA doc that she sees is involved in drug testing. He was able to get her into a study. Amazingly not only did she get the real drug but within 4 weeks she was pain free. She started to get more energy and was returning to the world of the living. She has always had lung issues and gets every bug possible. So of course she got a cold that quickly took over and she needed to be treated with IV antibiotics and the booted her off of the study. I was crushed she was devistated and then had to experience the rapid decline back into active RA. They had to wait until all of the study medication had left her system before putting her back on any other RA meds. The doctor assured me that he would do the best he could to get her onto another study but that was little comfort watching Mom spiral back into pain and fatique. After a long 12 weeks we went back to the Doc and he was able to get her into a second study and that med worked. Not quite as well as the first but she is again pain free. Now after all the background my point is this two different meds on the horizon. They each work in a different way, so there is hope that they will kick this RA thing. Wow, that was a lot of words to say hang in there girl I know they will figure this out and help people like you getting back to the business of humor.
Been staring at the screen wishing I could think of something helpful, inspiring, interesting… but no.
Just: thanks for this- you’ve done a lot for so many people, and being brave enough to share this stuff is part of that.
It’s easy when you get wrapped up in your own problems to forget that the smart, funny, pretty, interesting, happy people also have times like this, that it’s not all sunshine and giant chickens every day, for anyone. It’s terrible that you’re going through such horrible pain, our hearts go out to you.
But thank you for sharing, it helps when things get dark on this side of the Magic Glowy Box.
i can’t think of anything that has not been already said to you here…i’m just saying all that again. we love you. we’re here for you…
My mom suffered for years with RA before she was correctly diagnosed and all amidst battling breast cancer and a nasty divorce from my father. I still remember waking up before school to help her get dressed in the morning because she couldn’t put her own shirt on. And still she managed to work full time and get me and my little brother through the tumult of high school. Though it was hard for her to hide the pain she was in and though we were all supportive when she decided to seek counseling I’m ashamed to admit that until reading this post I never truly stopped long enough to think about the real pain and depression she must have went through during that time.
Thinking back on it now it was around then my mother started to talk about “putting it out there,” “it” being positive energy. There is certainly something to be said for reinforcing a healthy attitude – mind over matter and all that – and while it’s not always easy it does usually help. My mother still credits her remission large in part to positive thinking and a strong net of caring friends and family (and maybe the massive amounts of drugs helped a little too). She’s been in remission from the breast cancer for going on three years now and though she still has occasional flares she’s been largely healthy and active and off(!) meds for the RA for about a year now.
There is a silver lining, dear, even if it’s hard to find sometimes. See!? …the very worst part of this is you come out sounding like a Hallmark card.
p.s. I will be calling my mommy immediately after posting this to tell her I love her.
Victor’s response has me bawling. Thanks for that.
Stay strong Jenny.
I’m new to your blog and have no idea what kind of therapy/research you’ve already done, but you might consider looking into gluten. I put two autoimmune diseases into complete remission by giving up gluten. I was so encouraged I next gave up dairy (even better), and the final piece was to stop eating nightshades. If you haven’t already explored these avenues, it might be worth a try. Living in pain is no way to live–it colors everything.
I’ve been having my own dark thoughts this week – my last post was also about trying to get through those times. I felt so nervous posting it, but you’re right. That perspective when you’re feeling better is a great thing.
Life isn’t all pain, all the time. The pain does its best to make us forget all the wonderful things, but they are still there. It’s a cycle, and you just have to get to the top of it again and stay there as long as possible. An annoying balancing act, but so much better than the alternative. *hugs*
I love your outrageous writing and I love your heartbreaking honesty. Thank you for sharing all of it with us.
Hope is what we cling to during the darkest days-but it’s a slippery grip. I visit here for laughs, inspiration, and a dose of life’s trials, like you’ve shared here. Pain, the kind that stays with you until you forget what feeling “normal” is, is brutal and relentless, yet you somehow always manage to not let it grab all of you. My heart goes out to you and your tireless caregivers…this too shall pass…just never soon enough. With love and prayers, dear Jenny
I’m just some guy in Granville, OH who finds your blogs disturbing, engaging, frightening, funny, and a must-read. Your gifts to me – the the world – are many, and I hope to pay some of them forward. Feel better soon, and keep chasing joy.
Best,
Scott Gowans
Jenny, I’m sure you are sick of people trying to cure you and recommending that you take some bizarre herbal weed or go for weird therapy in tibet or something, but I can’t read this and not recommend the book “Ultrametabolism” by Dr. Mark Hyman. I believe he talks specifically about your issue. I would look it up right now, but I keep buying the book and then lending it out and never get it back. If you send me your address, I will just send one to you!!!
He’s not a psycho, but a real doctor.
Not a witch doctor.
His first name isn’t doctor.
I’m sorry that you’ve been in so much pain. I understand the depression and feeling like you’re a drain on other people. Been there. I hope you feel better soon… That your mind and body give you a break as soon as possible. Love.
Brave & kind of you to share this dark patch. Though I can’t relate to the physical part, the suffocating mental process is familiar. In your case it’s natural after all your body’s been through past days ….. so hang in there!
It took me a long time to want better over easier. But I’m so glad that I do. Thanks for reminding me.
{hug}
I hate that you hurt like that. Rheumatoid arthritis is an asshole. Please hang in there. You’re the funniest person on the Internet … and I hear that the Internet has, like, a bunch of people on it. So, you know. That.
Damn.
Jenny, I love your blog because you are irreverent, funny, and so honestly real, and I only wish that I could offer you the same colorful and humorous distraction that you offer us in every post.
I am sure your family feels the same distress that your readers do, that we are incapable of relieving your pain. I hope you know that even in the midst of your sleepless nights and drug-induced stupors, that we love you and lift you up in prayer.
My mother had RA starting in her late 20’s and I started taking care of her when I was about 10 years old. I saw those dark painful days and please know that my heart goes out to you. I hope that medicine has advanced since those days and that you have relief. You are a strong woman and as I get to know you more and more via your blog and twitter, I like you more and more! Hugs to you.
You bring us so much joy and amusement, the world is a better place with you in it.
In addition to regular medicine, I recommend ginger (I keep candied ginger around for anytime my stomach is cranky). Boericke & Tafel have an arthritis cream that does wonders for my knees: http://www.triflora.org/.
Good luck!
Jenny,
My heart goes out to you. Hold on, girl! Look at all the people who luuurrrrvvveee you!
I love your insane stories about chickens and James Garfield but the reason I keep coming back is posts like this. Even in your greatest pain you are able to bring hope and acceptance to others. That’s why I’ll continue to be a loyal member of your reading community because you’re seriously awesome and my life is better when I visit your blog.
I’m so sorry you have to go through this. One of my closest friends has RA and she had to go through several different combinations of treatments until she found one that worked for her, and what worked seemed to change over time. I wonder if your doctors are doing enough? One of my kids had weird allergy and the other had an immune disorder and with both, I found out that no doctor or hospital tried as hard as I wanted to find answers. They issued meds and platitudes and sent you on your way. Is there any research out there about what triggers the flares? It sounds like you have a great support system, but we just want more for you in terms of the medical side and reducing the severity and frequency of the flares.
<<>>
That was supposed to say HUGS
If you are as rich as Rush Limpballs or Glen Beck, get a script for Enbrel. Back when I had good health insurance I was able to get it prescribed and it fucking worked a treat for my RA. It cost $1200 a shot. No shit. Its an injected med. When the patent ran out the manufacturer changed the packaging/delivery system and was granted a patent extension so it cannot yet be manufactured generically. Way to go free market. We’re number one!!! The US has the world’s best medical system, if your a multimillionaire. Sorry about the grumpy old man tone but I’m at the ass end of a flare-up myself.
I forgot to mention, you have to inject it every week.
I do not have RA but I do have some crazy fucked up long term pain issues that make me feel similarly desperate and exhausted and cause me to cry on the floor next to my desk because I have to force myself to sit at it and type things to make money. The ONLY thing that keeps me going through those times is knowing that it will pass. But I didn’t always know that. I had to find some help first. Thank God I did.
From the immortal words of Jack Twist from Brokeback Mountain, “I wish I knew how to quit you.”
Or…his less memorable quote, “Do I look like I can afford a fuckin’ ropin’ horse?”
My favorite, “You know what, friend? This is a goddamn bitch of an unsatisfactory situation.”
Feel better, Jenny.
Oh, Jenny. I just wrote a very similar post, except about the path of my Depression. I can’t imagine the physical pain you must battle, but I think I understand the emotional pain. The exhaustion. The heartache. I’m glad you posted this. Youa re so wise and so strong. Such an inspiration. Thank you. Wishing you strength and peace. xoxo
No…quitting would most definitely not be better. I saw your tweet that life is looking brighter today and I’m so happy for you. Big hugs.
I have MS and completely empathize with your thoughts. I also can relate to the post steroid side effects…. ugh. I try and remind myself things like “Well at least I live in an age when I can get the right meds” or “at least I was diagnosed early”. I really do hope you feel better!
I tried to read the comments but I need to not be a blubbering mess today. Thank you for this, Jenny. I’ve got a chronic pain condition that’s “just pain.” But there’s so much more to cp than people know–anxiety, guilt, brain-fog, anger, denial, FATIGUE… Only my husband really gets that, and frankly, I’m glad and I hope those that don’t will never find out. Two things help me on shitty days: humor and horror. And you’re my go-to for the first. THANK YOU for opening up like this, but also for not letting your pain define you. It’s a huge encouragement for so many people.
It wouldn’t be easier or better for the rest of us without you. Thanks for staying in the fight and for brightening our world with your wit and humanity. You’ve gotta kick at the darkness ’til it bleeds daylight.
Thank you, jenny for posting this today. This week i’m suffering from a very dark recurrence of depression, andi am in aplace i haven’t visited for 12 years and hoped to never visit again. I’ve consulted with my doc and am waiting Hopefully for the meds to kick in… But until they do (if they do) i’m trapped in the dark, fighting so hard to remember that it WILL got better. My husband has never seen me like this and is so supportive, but it kills me to put him through this, too. Your post put into words everything i’ve been going through and may have to go through for another month. Thank you for taking me out of my head for a moment and showing me i am not alone. I pray we both are back to our real selves soon.
/hug
We need you, too. Just remember that. Not all of us have a Victor.
I became a fan two weeks ago after reading about Beyonce and have spent every day since then talking about your blog and how much it makes me smile. Reading this post made me realize how great you are even more than I already had. A few friends have been there, not because of rheumatoid arthritis but because of prior relationships and the drain those can put on people and inadvertently their friends. What Victor said to you and how you used it to end this post is beautiful. Jenny, you must keep on writing because you are an inspiration to those of us who enjoy sarcastic, witty, and down right crazy humor. Thank you for keeping it real today and reminding us that easier doesn’t equate to better.
Thanks for writing this. As a woman with Crohn’s Disease, and being allergic to all medications to treat it, my life goes through similar waves. Always asking myself when it’s going to happen again, for how long, where is it going to happen at???? You are not alone, and quitting won’t solve anything! Well written blog!!!
You so often make me laugh, yet today you made me cry. It was as though you had written exactly my thoughts. I stuggle with fibromyalgia, epilepsy, os arthritis and depression. I had said the same thing to my husband. He is also amazing and doesn’t want to hear of living without me. Victor also put his thought into words. Please know that you not only help others on your good days, you help others on your most difficult of days. Thank you
I’m glad from your twitter posts that you’re feeling better now. Victor’s a pretty good guy, don’t you think? There aren’t many who would embrace you, giant chickens, dead animals and all.
Keep on going Jenny and feeling stronger each day.
I have chronic migraine desease and much of what you feel I can relate to. In some strange way it is good to know I’m not the only one thinking and feeling these things and at the same time I wouldn’t want anyone to go through that. Hang in there, I’m right there with you.
Have you had a sleep study yet? Google “arthritis and sleep apnea” — I just found this at doctorstevenpark dot com:
“Various studies have shown that around 50% of all people with RA have obstructive sleep apnea, which is a very high number.
We know that one of the major effects of sleep apnea is systemic inflammation, with significant measured increased in markers such as CRP, IL-2, IL-6, and TNF, amongst many others. The physiologic stress response that’s created in obstructive sleep apnea can activate your immune system, making it hypersensitive or over-react to normal situations. ”
Before I started using my CPAP respirator to treat my sleep apnea, I was in a lot of pain all the time and couldn’t roll over in bed without moaning and tears. A few weeks after starting treatment, almost all the pain was gone. Now I can manage with just the prescription dose of ibuprofen.
Also please look into Maharishi Ayurveda and see if you can get appointments with Nancy Lonsdorf (www dot drnancylonsdorf dot com) or Kumuda Reddy (www dot samhita dot com). Both are medical doctors who are experts in Maharishi Ayurveda. Dr. Lonsdorf is the author of “The Ageless Woman” and “A Woman’s Best Medicine.” Dr. Reddy is the author of a number of books, including “Living Life Free from Pain: Treating Arthritis, Joint Pain, Muscle Pain and Fibromyalgia with Maharishi Ayurveda.” Ayurveda is the traditional medical system of India. It has a very comprehensive and sophisticated paradigm that describes how disease originates and how to diagnose and treat it. Maharishi Ayurveda is the revived form of ayurveda, restored to its full potential.
You deserve a lot of praise for not letting your mind attack you at the same time your immune system is attacking you. I send you love and very, very gentle hugs.
Hi Jenny,
I am a big fan of your blog. My sister suffered rheumatic arthritis and found some doctors in Boston that really helped her a lot. If your interested contact me.
<3
You probably wont even read this since I am post number one million and twenty four. But I just wanted to say that I unfortunately know literally exactly what you are feeling.
“Today, as Victor drove me home so I could rest, I told him that sometimes I felt like his life would be easier without me.” This is definitely something that I find myself saying to my husband at dark moments and it’s not pretty. No one knows what this disease is like until you or your loved one suffers from it and it is suffering. A side effect of my RA is a sulfite allergy. If I eat anything with preservatives in it or natural sulfites like garlic, onion, cheese, vinegar, WINE…within 4 hours my joints swell and I can’t walk. Sucky.
Are you on biologics? Oldman is grumpy and he has a right to be but if you can afford it…Recently started Enbrel and it has changed my life. I am on this 6 month free plan and its about to expire, so I will soon be selling furniture and parts of my body to pay for my shots.
Hang in there. You are a gifted writer and humourist. I find that humor is medicine for me and it gets me through the madness of a day. I wish you all the best.
Heather Moran
Knowing that ‘this too shall pass’ helps. You are such a young wisewoman to realize that. Thinking good, positive thoughts for you and hoping that you will emerge from this episode very, very soon. You are a goddess.
Lots of hugs, and what a gem you have in Victor!!!
We love you too much Jenny. My fiancee suffers from depression and when he’s going through one of those phases I tell him something that I’m going to tell you(modified slightly): If you gave in to all those little lies, our world would be a darker place. You are a light in our lives. You brighten it up so very much and never fail to remind me that no matter how stressful and complicated life can be, theres something to laugh at. When the darkness is crowding in on you, remember and cling to that light.
Pain is the worst, physical or emotional. When you are in it, you can’t imagine it will end. When you are out of it, you can’t imagine it was real.
You brighten so many people’s lives with your words and your humor. This world would most certainly be a sadder place without you in it.
Love you, Jen.
If you did nothing more in your life than bringing Beyonce to the world at large, that would be enough. I have six real chickens and they would be so happy to have a Beyonce. I’m dtermined to get one. For them. That’s my story and I’m sticking to it.
Victor is a prince of a fellow. He almost deserves you.
I devoted today’s post to you. An honor not to be taken lightly. I’ll spare you a link in my comment as CommetLuv will take care of it.
Feel better!
GOD, Jenny-I totally get it! Your honesty really makes me feel better about interrupting my ususal banter-heavy posts to feel sorry for myself about what later turned out to be Fibromyalgia (I posted it above).
Just so you know: You are my personal hero in ways you can’t even imagine. You remind me it really is OK to be myself, and maybe people (other crazy people?) will love me anyway. And you remind me I just have this one, precious life to live and I better express myself and have fun, cause I might never get another chance.
Love,
Tara
The fucking website killed my first comment so now I am writing a pissier comment.
Thanks God for your honesty. I interrupted my usual banter-heavy writing to post about what later turned out to be Fibromyalgia in April, and doing it made me feel naked and afraid. I’m so grateful to read your similar thoughts….
Just so you know: You’re my hero. You remind me that if I was as honest as I wanted to be, there would still be people who liked me, even if only on the Internet. If there was no one like you out there, I spend all my self-expression trying to be more like I think everyone else is and slowly die inside.
Thanks!
i love that you posted this… your honesty and transparency is rad. when you’re honest about your shit, it frees others to be honest about theirs. and we’ve all got something. i’m sorry about yours & sending well wishes.
Holy hell, Jenny, I’m comment #332….look how many people’s lives are better because of you!
Like so many other of your readers, I want to send you love and light and tell you that your blog has made my life better. But because I’ve been in those dark places of depression, I know that, at least for me, the things other people think or feel aren’t always enough to bring me out of the state I’m in. So, I’ve been trying to think of what else to say to help you through until it does get better, and I keep coming back to this extraordinary and totally random moment I had a little while ago. Here goes….
Two weeks ago, I was facing a day that filled me with anxiety and self-doubt and fear. As I was laying in bed, trying to muster the energy to get up and face it, my oldest son came in and lay down next to me. He’s seven, and full of energy, smart, and wild…he’s loving, but not a snuggly, lovey kid by any stretch. He was laying face-to-face with me; he reached up and with two fingers made a design on my forehead. “There,” he said, “that’s the symbol for bravery, craziness, or {something else… at this point I was so blown away by the moment that I couldn’t even hear the third option.} Which one do you think it is?” I thought for a minute…should I claim the one I wanted it to be? Did he have something in mind for this little game we’d never played before? “You tell me,” I said. He paused for a second. Honestly, I was waiting for craziness, or chicken-eyes, or whatever that third option could have been. But he smiled, and said “Bravery.”
All day long I walked around with the symbol of bravery upon me, and it has become my mantra as I continue to fight off the dark feelings you’ve described so beautifully. It’s such a seven-year-old kind of word; it makes me think of knights or superheroes, of a strength that I never really considered that I might have. I was trying to think about a way to blog about it, but instead I think I’ll pass this on directly to you, one of my blogging inspirations. The symbol of bravery.
Sending you courage, Jenny. Strength. Bravery.
OK, comment #369…I can’t even keep up with all the love coming your way!!!
My life certainly wouldn’t be better without you in it! You are amazing!
We would all miss you terribly. Feel better!!! 🙂
Thanks for this Jenny.
I’m 10 months into this whole cancer journey and on some of the darker days I’ve had thoughts like if I hadn’t survived the surgery everyone would be less burdened by me. I think anyone with a long-term or chronic illness has those same thoughts. Hang in there. The world would be a sadder place without you. I hope you’re feeling better today. (((hugs)))
Thank you for sharing this part of your life with us. We come here, not only to laugh, but to feel the sense of knowing you and caring about you. I hope you can feel the collective heartache that we feel for you. Please feel better soon. You are fucking amazing and the world just isn’t the same without you!
Jenny, I emailed you last year whilst in the middle of a crushing depressive episode and you wrote to me with such words of kindness it made me feel lighter to know someone out there cares even though we are complete strangers. It only seems fair that I do the same for you, though I don’t have your gift with words so don’t be too disappointed. I think I speak for many people when I say that we love you with our hearts, brains and souls and life would definitely not be better without you. I can only offer you positive energy and hope that the RA will get better with time, and if not, that you can find some way of getting through it but just remember that we all love you and wish you wellness. And lightness too xxx
I have RA also, and totally understand the days that the pain just won’t quit. But you know what?? Alot of those days when I’m in pain you are the one who makes me laugh until I cry!!! Please know how much you mean to oh so many people, and I for one can’t imagine a time when I can’t log on to your blog and instantly forget the amount of pain I’m in!
My mother-in-law. Wait. She wasn’t my mother-in-law. Not yet, because she died before we got married. But I’m going to call her my mother-in-law anyway because I loved her and I miss her and wish like nothing else that she had been there to see her son get married. In any case, she had multiple rare diseases that affected her much too young. She was given a couple of years to live, but then she lived 20 more. And now she’s gone and it is a constant, constant ache. For my husband, for his sisters, for his nieces and nephew, for his father, and for me. Her illnesses could be draining on her family, no doubt. It was hard for them and even harder for her. But she had lots of days of feeling good too. Of visiting her daughter in New York and getting to see a blizzard and Times Square. Of vising us in California and going to Muir Woods and seeing the Golden Gate Bridge and Alcatraz. She had periods of joy and health and periods where I’m sure she wanted nothing more than to curl up and die. But Victor is absolutely right. Some aspects of life might be easier, but nothing is better without her here. NOTHING. If it were, my husband wouldn’t still cry in my arms almost two years later while I try not to let him know that I’m crying too.
I’m thinking of you, Jenny. I don’t know you, but you brighten my days more often than you would believe. I hope yours become brighter soon.
Sending hugs and healing thoughts your way. Hope you’re feeling better soon.
My husband has kept this strip in his wallet for many years. It was the first thing I thought of when I read your post today.
http://www.gocomics.com/calvinandhobbes/1992/01/24
Hello, fabulous lady. I read every one of your posts, but this is my first time commenting. You are a brilliant writer and so fucking funny. I feel like I owe you.
So, here’s my deal. And it might sound nutso, but you might like it because of that.
I’m wondering if you’ve considered a paleo diet to help you, along with your medication. It can be a pain in the ass, but it can also be delicious… and if you read the “success stories” of people who’ve made the switch, eating paleo can do amazing things in mitigating and reversing ailments like rheumatoid arthritis. I’ve been in thyroid Hell for two years, and changing my diet has literally given me my life back.
Nutrition is not fun nor sexy to talk about — and I know it’s as tender an area as religion and politics, so I’m always hesitant to bring this stuff up. But I felt compelled to offer the suggestion because it’s the one tiny gift I can give back to you for the laughs and tears you’ve so graciously given to me.
Robb Wolf’s book The Paleo Solution is a really good place to start if you’re curious (http://www.robbwolf.com), as is this site: http://whole9life.com/2011/06/whole-30-v4/. I blog about my eating and exercising adventures – with lots of recipes – but the two links I’ve listed are the best places to ge the science that might convince you it’s worth a try.
Here’s a testimonial from someone with rheumatoid arthritis that tried paleo and had lots of success:
http://robbwolf.com/2011/06/06/real-life-testimonial-rheumatoid-arthritis-gone/
Best wishes to you for feeling better soon. We’re with you, sister.
Oh how I wish I couldn’t relate to this post. I can and I have said the EXACT same thing to my husband. I hope your pain and episode passes quickly!!
If you are that miserable I doubt seriously you’re going to scroll down to the bottom of 370+ comments, but should you be curious, I’d like you to know that I honor your willingness to be honest as well as humorous. Debilitating pain can certainly suck the life out of a person and the fact that you can overcome it is a tribute to your inner strength (not to mention good drugs, I’m sure.) I hope that when you are lying in bed feeling like you want to cross over to the land of milk and honey you can look out your window, and see Beyonce in the back yard smiling back at you. That somehow that smile will bring your a moment of joy if nothing else.
I’m so sorry, Jenny. I just learned the difference between rheumatoid and osteo arthritis this week because a close friend of mine has a rare form of rheumatoid arthritis that affected his lungs.
Hope that your dark days are soon sunny and that you’re back to your funny self very soon. XOXO
So many comments for you to read, yet I can’t help commenting as well. You INSPIRE people. You cram more into your good days than most people do in a year. Take care of yourself. Your family knows you love them.
You are amazing. You are strong. Thank you for sharing this.
Much love to you, Jenny. Reading everything you write, whether hysterical or sad, makes my day better. I wish I could give back to you what you give to me.
Every day you don’t get better, I’m going to punch some fucking college kid in the head for you!
The world would be neither easier nor better without you.
The genuineness of this post makes me love you even more. You inspire me with every blog to live a life worthy of being written down and shared for others to enjoy, and although we may not enjoy every single day, you have the ability to find the beauty in everything that happens, good or bad. (Even by making me want to irritate my husband even more so I [we] can learn to laugh..I found a metal bulldog, that had my credit card not been confiscated that morning, he would have joined our family. Had you/your blogs not been part of my life, I would have never had a desire for any sort of cast iron pet). You are extremely appreciated and have impacted mine and many other lives maybe more than you know. Thank you and please please don’t leave our blog world.
Hope you’re feeling better soon.
Thanks for sharing and hugs to you!!!!!
I get that too. Don’t listen to those lies. Tell ’em to fuck off. And I have a new affirmation for you: “The purpose of my mind is to entertain me with comedy.” Hang in there. It will pass, it always does. Much-o Love-o to you.
That last sentence has application in many of life’s arenas, but the arena you’ve picked is likely the most important one in which to employ it. Can’t wait to see you on the flip side.
Writing from the center of an emotion is just as valid and important as writing from the distance after it’s passed. I do it all the time in my writing and on my blog, and yes, sometimes it’s really boggling to look back and read how delirious your mind was at the time and wonder why on earth you thought all those horrible things that make no kinda sense.
The poet William Carlos Williams called this notion “the thing itself”…meaning “there are no ideas but in things”. It’s real, even if it’s in passing, and if it runs as deeply as pain, then it must be acknowledged. People today are so eager to dismiss how powerful our more negative emotions can be and just want to be happy all the time. I say roll with it, stay on top of the wave, and eventually it will break on the shore.
This is exactly how I feel when my anxiety “flares up”, like it did before I got my diagnosis or just after my wedding (when I thought it was a good idea to be off my medication for the months leading up to my wedding. . . . I know). It is a terrifying thing to look back on a month and not be able to remember how, exactly, you survived, and the feeling that everyone is looking at you and wishing you’d just snap out of it is miserable. I’m blessed to have a husband who also refuses to entertain the idea that he’d be better off without me, even if I often think he’s completely mad for staying. 🙂 Hang in there!
It’s hard to share the shitty parts. Thanks for doing it.
Roxanne
Sending big hugs and prayers, Jenny.
Thank you for this beautiful post. I have a chronic pain disorder and sometimes think the same thing, but the “easier but not better” distinction never crossed my mind. Thank you for speaking encouragement and beauty into my life!
My baby brother has RA and it completely sucks. My wish for both of you is some sort of miracle that takes this pain away with out ripping apart your stomach or pumping you full of dangerous chemicals or altering your moods and mind. Bless you my friend and hopefully better days are ahead.
Hang in there! I’ve been following your blog for a week or so now, and just wanted to let you know that you always bring a smile to my face! Victor sounds like a sweetheart!
Please tell me you are under the care of a Rheumatologist and are taking “Biological” drugs for your RA. I’ve been on Humira for years and my RA is totally inactive. When diagnosed I was given ARAVA, but, it didn’t work for me. Then, Remicade which didn’t last the 2 months it was supposed to. Last, I was given HUMIRA and it has been like a miracle. I don’t have “flare ups” and pain. If you’re not using these or other “Boligical” drugs, maybe you should look into it. Good Luck.
(for more information about what Humira will do for you as far as saving on co-pay cost, go to my daughter’s blog http://www.gaiabodytherapies.com)
Beautifully said, and many good thoughts to you from me. I’ve felt the same (not from RA, but chemical sensitivities). Thank you for writing it so well, and for being there for the rest of us.
Great post. You chose the right time to write that and I am sure it will serve you well in the future.
Sometimes our brains and our bodies are not our friends. If only there was a way to let them know that they are stuck with us and should play nice. I hope you feel better soon.
Aw Jen. :’0( Breaks my heart to see you struggle with yourself. Although I don’t have RA, I know that battle and the infamous ever lengthing tunnel to stability, all too well. Many a times I have convinced myself that that light at the other end was just the lamp of an on coming train. Luckily, we both have supportive family and friends. Yes, they get a bit drained by us, but it doesn’t mean they don’t love us. Just means they aren’t superhuman and neither are we. Well… actually… maybe we are! We go through hell and somehow manage to make it back, attempt to make light of our situations and crack a joke in the hopes of putting smiles on people’s faces so they don’t feel bad. Shit. We ROCK! Rock on Sista!
Yay for Victor. Glad you have him.
As for you, you remind me of the Honey Badger. “Honey Badger doesn’t give a shit. Honey Badger will get bit by in the face by a cobra and just take a light cat nap. And then he eats the cobra.” RA is your cobra.
Wolverines!
Um.. life would NOT be easier. I can say that and I’m not even your family or close friend. I had the shittiest day ever today, so what did I do? I came to your page. Because you make me happy. So no, life would not be easier without you. It would suck. Badly. It would be without the humor that only you possess. I like that humor. And I like the real. So I’ll be here while youre in the hole, waiting for the badass inside of you to climb out of it. Thanks for making my life easier just by living 🙂
You make me laugh out loud so many times a week, I could never thank you enough. Hang in there. No one wants you to be different, just to feel better. And we’re all willing to wait until you do. 🙂
I’m a new reader…only found your page via a friend a few weeks ago. You’ve already touched my life in all sorts of (non creepy) ways. I’ve already spent tons of hours going back and reading old posts and laughing and crying. I have endo that is mostly in remission but I go to the doctor tomorrow to see if this awful pain and weakness in my hands and arms is RA. My grandmother got it in her 30’s and I feel like I’ve spent my whole life waiting for that horrible diagnosis. Thanks for reminding me that life can go on through pain. Stay strong! <3
My world would be so much less without you. This will pass. In the meantime, know you are loved and that the world IS way better with you in it!!!!!!!!!!!!!!!!!!!!!!!!!!
you’re beautiful, and honest, and much more stronger than you give yourself credit. You’re beautiful and adored by many; and for many, you’re that little voice at the end of the tunnel that reminds us that there’s still a lot worth fighting for and many reasons to keep holding on. Never forget that.
Victor couldn’t be more right about it. Life would be much easier without all the struggles, pain and frustration; but it wouldn’t be any better or more beautiful; and it certainly wouldn’t make you or any of us any stronger.
keep on going, I love you, and tell that depression to go fuck herself; that old skanky bitch.
It sounds terrible. Have you tried relaxation methods? Hang in there, I recently subscribed to you feed and am really enjoying it.
What a precious, precious husband you are blessed with! Chronic pain is awful and can beat and wear you down. During those times it’s hard to think truth and darn near impossible to make any decisions. Just pamper yourself and watch I Love Lucy reruns (or whatever) and each chocolate until you feel better!
I have psoriatic arthritis, and nobody can understand the pain. Or the depression. Or the hopelessness. Or why nothing seems to make it “better”. And honestly, I’m glad they don’t, because nobody should have to live our hell. I’d hold your hand if I knew it wouldn’t hurt so damned much. Don’t give in to the depression. You’re worth more than that!
I too have RA and feel the same way during flares. Know that you aren’t alone and that your words have probably educated some people who have no exposure to RA and what it is like, helping even more people. Gentle hugs.
I’ve been in the abyss, too, with the pain (car accident). I understand. You are awesome and loved, and I’m so glad you make it through every time, because we need you to help US get through! Feel better. I mean that from the bottom of my heart!
I have MS. I get the stress and fatigue and depression and feeling like you’re a drain on your family- that’s how I feel when I get sick. But you’re a fighter. You’re awesome. You will get better. And your family loves you and wants you to fight the good fight. You’re not alone.
Thank you for sharing this. You have no idea how deeply you have touched me. And possibly saved me. Hugs to you. Hope you begin to get some relief very soon.
I’m so sorry. I didn’t realize you had RA, it’s a horrible disease. I have Crohn’s and have some RA/Crohn’s-related arthritis, but not near as bad as it used to be and nowhere close to what you deal with. I love your post about the finding of Beyoncé the giant metal chicken and read it whenever I’m having a horrible day. Thanks for blogging even when you have a flare-up, I don’t know if I could blog during a Crohn’s flare. Chronic disease bitches gotta stick together. You rock.
Never forget that you are worth it. All of these people wouldn’t waste their time on someone they didn’t love…on someone who wasn’t worth it. Hang in there. We are all praying for you. Unless, of course, they are atheists. Then I don’t know what they would be doing…but I’m sure it would be really nice. 🙂
I KNEW there was a reason I loved you-besides the giant chicken and homicidal monkey. i have RA, fibro, Reynaud’s and some other crap. It’s wonderful knowing I am not alone in my misery—ha, see how sick that sounds? Keep at it (the humorous writing part, not the flare-up struggles-I’m not THAT mean). This writing stuff really helps through the tough times.
Love you, love Victor, hate RA. BOO! I think I live close-enough to bring a casserole. But, you might not want it since I’m not a good cook. Let me know 😉
I read your blog every single day. When there isn’t a new post; I reread the older ones. Like you, I’m living with RA….your blog heals my soul as none of the infusions, injections, pills and therapy could ever heal this disease. You give me hope….take time for you…your fans can reread your blogs until you’re ready to venture out and get Beyonce a boyfriend! My life isn’t easier just better because of your gifts. Stay strong.
“Because quitting might be easier, but it wouldn’t be better. ”
That is the single most powerful statement I think I have ever heard. Thank you. You have no idea how awesome you are.
And you made it!
I have RA and Crohn’s, and I have been in the same place so many times. Victor is right (as is my husband when he tells me the same thing): Sure, it’d be easier, but it wouldn’t be at all better. Even worse, it’d be boring. 😉 I hope you’re feeling better soon. xoxo
Well, I think you know that I adore you because I always comment on this here blog and I am tremendously sorry that you are in pain. I think that, despite this disease, you do one hell of an admiral job of taking life’s lemons and making lemonade (maybe with a splash of vodka? just for fun?). You are an amazing person, and your struggles only make you even more incredible. Peace, sister. Feel better soon.
Victor is usually *really* off the mark. Like, seriously, the man wouldn’t even let you buy a bottle of tequila in the shape of a rifle. WTF, Victor?! But this time he’s right. Don’t let it go to his head.
I love love LOVE that zombie t-shit. We went to the Vancouver Zombie Walk yesterday and all I could think all day was *how fricking awesome would it have been to come as the zombie Bloggess?* Next year, baby. Next. Year. I’m gonna hit up the town with curlers, a blow drier and a TON of fricking gore.
My wife introduced me to your blog, and the happy loving crazy sad hopeful posts help me appreciate life better. You’re a strong, loving caring woman and you remind me of my late mom, which makes me happy. Sometimes life sucks, but when you share your suck maybe we all feel better together. my wife has ms(so her body is trying to kill her too) and I hope that we can stay strong and loving like you and victor our whole lives. Let victor know he’s got a 25 year old male who thinks he’s pretty cool too (and yes I’m proof you reach a male demographic.)
Oh Jenny! I don’t have the arthritis, but I have the depression. I thought I had it conquered these last few months but it hit me again, hard a week ago. It is part of who we are. The people around us love us for who we are. Thankfully we have them! All of us love you and are rooting for you. If there weren’t people like us, then life would be super boring. And if there weren’t people like Victor, life would super suck. Hugs to you and Victor. I hope tomorrow looks brighter!
I spent over 10 years battling RA so can truly sympathize with your frustrations. Try to stay strong and know that your stories lighten the day for many people.
I have RA and found this very poweful. Thank-you so much.
Hang in there kid. There is always the morning to look forward to.
I had a dream the other night where I was on a killing spree and bloody sex rampage with Stephen King.
Last night I dreamed I was Heidi….as in the girl from the children’s book.
Your blogs brighten my day and I share them with so many of my friends. All of our days are better because of YOU! Feel better soon!
My DIL suffers from arthritis since she was a little girl. Recently she has totally changed her diet (dairy and wheat are gone) and she has seen a HUGE improvement. She started by going to a naturapathic doctor…pretty restrictive at first but it might be worth a try for you? (She can still drink wine…beer is gone tho LOL)
I had no idea you were a fellow RA sufferer when I fell in love with Beyonce chicken. Don’t give up hope. You bring happiness to so many. 🙂 – Beyonce lover
I’m going through a fibromyalgia flare up right now, and it may not be as bad as what you’ve described, but it’s pretty miserable. I can’t walk very well at all and certainly can’t walk very far. It’s painful at all times and is just stupid and mean. I have these about every two months or so. Nothing, absolutely nothing, has ever helped when these are going on. I hope that your flare up is gone soon and I wish you could stab it and make it leave faster.
I thought the post itself was sad and sweet and inspiring, then I read the comments.
<3
Living through such things may really suck, but it’s still better than the alternative. Hang in there. We’re all pulling for you. And sorry if the notions of hanging or pulling cause any further twinges…
I can’t believe I’m behind on stalking you, AGAIN. I swear I’m not adding a comment now just to get a free stabbing (I’m perfectly capable of doing my own stabbing, but I appreciate the offer). I used to have seizures that lasted maybe a minute at most. But during the seizures, I would imagine them lasting FOREVER. I’d rather have my fingernails pulled out. I’m not shitting you. And after every single seizure I would wonder why I thought it wouldn’t end, because they always do. I think when your mind is at a certain dark place, it tricks you into thinking that there’s no hope. But there’s always hope, and this post is a brilliant idea to remind yourself of that when you’re in the dark place again. If nothing else, at least your experience and wisdom has given the rest of us hope.
Tomorrow will be a better day. You are a smart, witty woman and what ever your brain tells you about the pain or being a drain, is wrong. I discovered your blog a bit ago (one word…Beyonce) and I have been hooked ever since. Make sure you stick around to entertain me, but feel better. Look at it this way…it’s nothing a pound of coke won’t fix. Or point a bottle of good tequila at your head and pull the trigger. That’s what I do sometimes to make the pain better.
I am so sorry that you have to deal with something like that – but Victor sounds like an amazing, supportive, loving and wonderful man!
The flares are the worst! And writing about them is a boost for everyone who has an invisible disease! For that reason alone you would rock. I wish I could hug you!
Xo susie
I suffer from epilepsy, the fall down pass out go into full convulsions and occasionally piss yourself kind. Those feelings you described are all so familiar to me. Kudos to you, standing ovation for sharing this. I love ya, kid.
Ah, yes – the loveliness of a chronic dis-ease that flares up and takes you back into an emotional black hole just like the first day you got your diagnosis. Mine’s MS. Thank you for the smiles and giggles – nay chortles complete with snorts – you give me on my tough days. I wish I could do the same for you – love and light on the way.
Hugs to you and thank goodness for Victor putting life with you into perspective… hope you are on the mend soon!
Thank you for this post. You clearly sum up the feelings I’ve had during my flares of RA and fibro. Maybe their lives would be easier and I often feel guilty that it’s not. Thank you for pushing on and sharing yourself with all of us. Sending you lots of healing energy so that you can enjoy your days with less pain again.
I’m hoping you’re resting and/or feeling so much better that you’re out frolicking with your lovely family, rather than reading this comment. But just in case. I’ve told you before, years ago, on several occasions, how much reading what you’ve written has helped clarify my feelings towards my own depression, to remind me that if someone as incredible as you can be fooled by it sometimes, it doesn’t mean I’m a failure for not always being able to fight it as well as I wish I could.
Things are… interesting right now. All up in the air, soon to be literally – as-of-yet-unexplained illness, imminent continent move, imminent start to a program I’m terrified I won’t be smart enough for, and being on the other side of the world from the little girl I fell hopelessly in love with and plan to do whatever it takes to adopt. And when things are hard, I feel the ache of missing her that much more acutely, knowing that she’s in an orphanage wondering where I went, falling asleep alone in her crib and waking up alone. For now, though, there is nothing I can do to make her mine, and the only thing that will make her more likely to be mine later is to go to school, to do the work, to get established in a life so that if (when, please make it when) the law changes and/or I get married, I can give her the life she deserves.
And in the meantime I run my nonprofit, and we try to do the little things for all of the orphanage kids – first a well (wouldn’t have happened without your help, Jenny), now clean water (just completed the fundraiser, will install in December), next raising school fees for little Ericki, Dainess and Stevie to get them started out in the world. And I do it for them, partly, but I know I do it for me too, because the despair of being so far away from my Z is eating me up every day, and this way I feel a tiny, tiny, tiny bit closer to her.
Sometimes… often… I have moments where I wish I didn’t care. I think about what it would be like if I’d gone, and done the work, and come home, and not left a huge chunk of my heart behind in her tiny, sticky little hands, grown chubby from the spindly stubs they were when I arrived. I’d be free, now – planning my life in a new country, excited to move forward with my career, eyes on the horizon instead of looking back anxiously behind me.
It would be easier. It would not be better.
When I got there, she was so tiny and sick, too riddled with worms to gain weight or strength, unable at a year old even to crawl, her belly was so swollen and her arms and legs so thin. Then she got pneumonia. And her little system couldn’t fight it off, after her first round of antibiotics she still lay in the bed all day, little chest barely rising and falling, rattling like a stick was running up and down her protruding ribs. We went down to the hospital, the two of us together, and they confirmed that the drugs weren’t working. I held her while she bawled, as the technicians fumbled to try to find a vein in her immature, underformed arm. I rocked her and my tears mixed with hers and my sobs shook with hers and my heart beat with hers as they gave up and injected the drugs, painfully, into her leg. I held her and stroked her and sang to her, both our tears all over my face, until she finally settled down to sleep on my chest, and I knew I would never be the same.
It would be easier if it had never happened. If I hadn’t pushed to go to the hospital, if she had gotten better or died, whichever it would have been, and neither would have been my story.
Instead, I throb with missing her every day, every time I see a child, every time a kitten stretches their neck out for a scratch under the chin, just like she did – does. I scribble poems into unpublished blogs to keep for her, one day, holding out hope that I will have the chance to make her mine.
It would have been easier. It wouldn’t have been better. Thanks for reminding me. You are still my hero.
Damn it I read you for a laugh, but you made me cry because my brain tries to kill me too. Thank you for the post. Nice to know I’m not alone…
I appreciate your honesty. 🙂
Thank you so much for your eloquence. I just read this to my beloved husband with tears in my eyes. Your words perfectly express my thoughts about my chronic migraines. My husband kissed me and assured me that things would not be better, just easier. I’ll have to go find a Beyonce this week to thank him.
I hope you feel the love from all of these posts. Maybe our combined prayers and thoughts will kick your RA in the ass. You bring so much joy to us all Jenny…I am so sorry that you have to suffer. xox
I as with so many here also havebmy own chronic pain issue and am mid flare up. This post is spot on and so great. You are so great and we are all better together…. Now back to lurking
Victor is awesome. Feel better soon.
I’ve battled depression.
That paragraph struck me very deeply. People who have never been that dark, don’t know what it’s like. Nobody understands that many times it is simply easier to stay stuck down on the bottom and not fight your way back up for air. That it would just be easier to let the cold, darkness suffocate you.
But what they also don’t understand? That once you’ve been down there and have fought your way back up – you are stronger than they will ever be. You have more strength than those people will ever have. And you have more desire to live and be happy than they even know is possible.
Why? Because you fought for it.
Sending LOTS of love, continued strength, and the knowledge that you will kick RA’s ass because, well, that’s just who you are.
Love ya, girl.
Man, I would have SWORN I left a comment for you last night…it was from my phone, so maybe there were technical difficulties (aka I screwed up). At any rate…I am very sorry you are going through the struggles you are. Chronic pain so totally sucks. Thanks for sharing the way you do–you mean a lot to people, as you can tell by all the comments. Including me. You are in my thoughts and prayers!
I hope you feel better soon…and that you don’t listen to your brain. 😉
And Victor is right…life would not be better without you.
I posted about depression and suicide a little while ago…about a friend who did listen to his brain. I would love your thoughts on it if you have the time! (because I cannot keep referencing you on my blog…I do it too much already, but dammit, woman! You make me laugh!)
((hugs))
I suffer from Carpal Tunnel Syndrome. Before I underwent surgery for my left hand which was in constant unbearable pain, I used to have dreams (not nightmares – these were actually happy dreams) of chopping it off with a meat cleaver, the pain was that intense. So I know the pain you’re talking about.
I can only say what I say to myself — ” this too shall pass”. It’s a phrase I use a lot between the CTS (there are still days where a meat cleaver seems a decent option) and raising a teenager with aspergers syndrome. Your blog makes me laugh like a crazy loon on those bad days. Thank you for that. Stay strong.
I think that Victor is a darling and you should get him another 5ft chicken! ? Feel better soon 😀
What to say to the woman who has established such a community that $42K was raised practically overnight but yet wonders if the world might be better without her? What to say to the woman who has gotten me to think about being furiously happy and just what that might look like for me? What to say to a woman who has had to endure much more physical pain than I have?
What I will say is that you move me. Your funny posts, your serious posts, your poignant posts–they have all moved me. I am a little more irreverent now. I take things a little less seriously. I feel connected to people I may never meet who are spread out all over this world. I am more committed to being furiously happy. I take people’s needs more seriously. I, Mindy Sitton, would not be better off without you. It’s your vulnerability, whether being funny or serious, that allows me to connect with you. And I offer you mine, anytime you need it.
I I could wave a magic wand and make your pain go away, I would. If I could wave a magic wand and make everyone’s pain go away, I most certainly would. If I could wave a magic wand and make my own pain–while mostly not physical go away–I would do that too, even if it would not be the wise thing to do. I realized recently that I may never be “not broken.” I may always have brokenness inside of me. And I finally accepted that, and found a strength from it I’ve never felt before. Have you played a small part in me being able to do so? I believe that you have. And so, I wave my magic wand for something I can give you Akhilandeshvari, the goddess of “Never Not Broken.” I’ll share her with you, along with my vulnerability. And we will see what marvelous creations she may help us conjure up from the beauty of the broken parts and pieces.
Be well, Jenny. Be all manner of well.
Mindy
(Very gentle) *hugs* Jenny. xxx
You are an amazing woman. I can’t count how many times that I have laughed out loud reading your blog. You make this world a better and a hell of a lot funnier place! Smooches!