Stages of Rheumatoid Arthritis Heartache
Warning: This post is for the faint of heart.
Tired of the stages of Rheumatoid Arthritis grieving
Yeah, I’m probably not supposed to say these things. Whatever…
Some of these RA changes are wearing thin. I never wanted to be branded by anything negative. I’m getting tired of feeling like I’ve lost credibility because of the chronic illness label. Does anyone else feel like this?
Tired. I’m tired of hurting all the time. Also, I’m tired of having to pretend I’m absolutely fine and physically able around folks who can’t handle the truth. It’s physically so difficult to do that – I have to avoid people most of the time. Tired of losing that social interaction, but it’s too difficult.
You know what else? I’m tired of not being believed. A pharmacist just told me, “At least you are not really sick. We have really sick people.” But, we need these expensive medicines to treat the disease. Employers don’t like to pay the health insurance premiums for an RA patient either. Did you ever have to defend how expensive you are?
I’m tired of so many things. I’m tired of the way it’s assumed this RA pain only bothers me when I mention it. If I’ve explained what it’s like, then why can’t I be believed? Stop telling me you know I’ll feel better tomorrow – it’s been four years of RA pain that only gets worse.
Remember the RA Help button last month? This time, I’m looking for the Eject button. Do you get the feeling there is no way out? Like Alice in Wonderland: Where’s the right door? What’s the right mushroom?
Stages of Rheumatoid Arthritis grief: enough already
Sometimes, we just feel like we can’t take it anymore. The other day, someone left a comment about wanting to go in the closet to lie down and die from too much pain and too little understanding. And no way out. There are many others – I could go on.
Maybe you’ve read this post on RA depression. There is some discussion of the normal stages of grief and how they relate to RA. Would you believe I just read an article about the anti-depressant Prozac (Celexa) being used to fight Rheumatoid Arthritis in an experiment on mice? Wouldn’t that be convenient?
My rheumatologist asked me if the medication “failures” depress me. I explained that I’m fine because I have had contact with others who live with RA and that has helped me. I know I am fine – I am just tired of being fine with RA. I’d rather be fine without RA.
Recommended reading:
- Where Is the RA Help Button?
- The Rheumatoid Arthritis Warrior’s RA
- Be Your Own Counselor with Rheumatoid Arthritis
- Rheumatoid Arthritis and Depression
Kelly,
Thank you for your blog, your post, and to all who responded. It felt so good to read comments of exactly how I feel every day, and how so many people in my life do not understand.I was diagnosed this past year, and am having a tough time adjusting to having RA. If I had to have this disease, I just wish it could of come later, when my kids were grown. The pain was so bad last night, I went to bed crying only to wake up in more pain. Every day seems to be a battle on just trying to live and function normally, work, housework, taking care of the kids. I won’t give up, I will keep trying different meds, diet etc, but so far nothing is getting better.
Just wanted to say reading these posts made me feel “normal”, whatever that is now!
Thanks Kristen. I share a lot of those feelings and experiences.
This hit home with me:
“I’m tired of so many things. I’m tired of the way it’s assumed this RA pain only bothers me when I mention it. If I’ve explained what it’s like, then why can’t I be believed? Stop telling me you know I’ll feel better tomorrow – it’s been four years of RA pain that only gets worse”
My family (who are very supportive) have to be reminded, that although I don’t say it —I am always in pain, somewhere in my body—and have been for 6 years, I just have learned to be quiet.
Yes.
I’m just coming out of the worst bout of depression I’ve had since I was first diagnosed. For me, my pain is physical and emotional. I think I’m pretty lucky that my co-workers are very understanding of the pain aspect, I’ve worked very hard at educating them as to the pieces and parts of this cr@ppy existence. The worst part is that they are better about it than my family. I have pretty much just chalked it up to being a lost cause. The other part is that I am by myself. I have no boyfriend, husband, kids or the like. My family lives in another state so I have to be thoughtful as to the time and availability of people when I have to have a surgery. The last time I had surgery, I almost had to go to a nursing home for recovery until I could help myself. Luckily, my Dad was able to make changes in his schedule and was able to spend some time with me. I get so tired that I get behind on my housework because I still work full time. So, I am embarrassed by this and don’t have people over. This sucks and I really hate the weakness I see in myself. I haven’t been on a date in over 10 years, you can tell by watching me walk that there is something wrong with me and it definitely isn’t a sexy walk. So, am I grieving? yes. What stage? I guess it depends on the day. Today? Well, a good friend is in labor at the moment. I’m really happy for her, but incredibly sad that I won’t get to experience that joy for myself, I’m 45 and have been diagnosed since I was 28. Usually on Fridays & Saturdays, I’m angry because I’m so tired from the week that going out for anything other than dinner is not in the cards. For me, the eject button would be best used on the weekend to eject me out of the sick Becky and land in the normal,able-to-wear-sweet-stiletto pumps Becky and dance the night away like I used to.
I’m very grateful for all your testimonies! I’ve been ill for 5 years now! I got RA when my beautiful little girl was only 4 1/2 years old…when she turned 5 I could barely walk or move anything. The pain was so bad that I thought I was going to die. However..the hardest part of this illness was missing my daughter’s Mothers Day party at school, her kinder graduation, being the only parent that couldn’t help out in her classroom, needing after school help(I couldn’t see her until my husband returned from work around 8:30 in the evening!) I missed EVERYTHING! funny or not so funny thing is that all her memories are of me being sick with RA! I mean…she has good memories..but this illness took its toll on the whole family. I have a hundred little notes that I have saved and will keep forever that say,” I hope you feel better from your disease mommy!” “I love you!Please don’t cry!” I always tell her that she’s my angel!!!! And she is!!!! And I’m truely grateful for being blessed with a very good husband!!! He always tells me to hang in there…be strong!! and that someday this will pass. One thing I know is that WE are brave souls!! We must be strong if our Heavenly Father thought that we could handle this illness! I always tell him I can’t! But he knows best and does love each one of us no matter what belief…So each day goes on..in pain…but atleast I’ve learned to be grateful for the good things/people in my life! I wish I could meet all of you! It would
be great to have a once a year get-together where we could all meet, talk, shop, and maybe even dance the night away! : ) love You!
-Angela B.
Angela, what a beautiful comment. Thank you for taking time to share.
About the gathering idea, there is something called the Gathering in Arizona next week. I think it sounds just like what you said… They are having it every year. There was a post about it today on our Facebook page by Arthritis Insight.
Thanks for sharing, Becky. I’m wondering about the baby now… everything come out alright? :chic:
I miss a nice normal lady walk w/ nice shoes, too. Once in a while, I get about 10 steps and it makes me so happy. Then a knee or ankle or hip crumbles.
What do you think helped you out of your depression? Just regular ups & downs?
My friend had a beautiful baby girl named Kaitlynn. She is absolutely beautiful with a full head of sandy brown hair :). Then I started a flare that covered my whole body. Normally I’m able to pull myself out of a “blue moment” just by forcing myself leave the house and go do something–a movie, dinner, time outside with my dog, in the summer I would go to a nursery and look at the plants and maybe buy one to take home and plant in my garden. Just being outside helped. This time though it was really bad, I literally saw everything in black and white and had brain fog. I had to talk to my GP to get medication because it was to the point that I couldn’t even function, doing everything on autopilot–wake up, go to work, come home, take the dog out, crawl back into bed & repeat. I don’t really even remember January & February. On top of that, I couldn’t get my flare under control and had to go back to 10mg of prednisone every day with some days at 15mg which in turn put 10 lbs in a month. So, now I am taking Zoloft which is helping with the fog and general depression. I feel myself getting a better positive outlook but my flare is really making it hard. I will beat this one way or another. Thank you Kelly for all you do here, it really does make a difference!((HUGS))
Thanks for taking time to let me know about the baby. And I learn from everyone’s stories! I know just what you mean about the autopilot thing! There is so much pain that you can just shut down your feelings so you can try to just coast in neutral and “ignore” your body. You go thru the motions as much as possible, but it is bad.
I also know about how it starts to wear you down – four years of only flare – every day worse than the day before is wearing on me right now. So this is what “progressive” means. I hope the Zoloft helps you. Up late with sick boy – I need to go sleep now. Thanks for the hugs.
Becky, I have followed the same journey with this disease, where I was away from my family and had no support. I was diagnosed 5 years ago, and doing this alone is incredibly hard, and when you see friends celebrate the milestone events like marriage and babies, it’s all the harder.
After a year of doctors, medications, disbelieving stares, unable to work and financially stretched within an inch of my life, I found myself in my GPs office absolutely broken. Beside myself with stress and distress, she recognised I was on the verge of a pretty serious breakdown and got me into a counselling program run by our local council. It saved my life. Finally there was someone who could hear me and provide the support I needed so badly.
If there was one button i could have, it would be [pause]. I’d love an Eject button but I’m realistic enough to know that won’t happen, but to be able to pause my pain? Even for a day? That would be unreal. I’ve forgotten what it’s like to not be in agony everyday.
That’s a good one Rebecca – at least a pause for a moment.
Hi Kelly,
Yeah, I have been on Celexa for 9 years. My RA has still gotten worse, but it helps the depression well. I go totally crazy if I don’t take it or try to wein myself off of it.
Vicbo
I think I get more depressed about how others view Rheumatoid Arthritis then having R.A and all the issues that go with it. I am not asking for sympathy nor am I asking for special favors, all I am asking is for people to understand it is not your typical arthritis. I just want those who are around me every day to understand……Everyday is a struggle for me. It is a struggle just getting out of bed, taking a shower, tying my shoes, putting on my clothes and going to work, not to mention spending all day at work. However the struggle does not stop there, once you come home it starts all over again. There is dinner to cook, household chores and even laying in my own bed, trying to get a good night sleep…if there is such a thing, this is what depress me!!
Toni,
Yes, it’s a tough contest some days which is more depressing. I’ve had someone ask me about why we care about that. I’m not sure, but I think it’s what you describe: RA just affects every single thing we try to do & every single moment (for me) and is almost completely invisible so everyone else does not adjust expectations or acknowledge that I am struggling.
I have a hard time explaining to people that its not ARTHRITIS its an AUTO-IMMUNE disease that can attack every joint and organ in my body. So far its doing a good job my eyes, skin and entire back have been effected not just my hands, wrists, feet and ankles. Don’t forget the elbows and knees and shoulders too. The only meds I’m on right now are MTX and pain meds as I impatiently wait for insurance to say they’ll cover Orencia. Not a spot on my body does not HURT and I am tired of telling people my house is a mess today b/c I hurt too much to bother or even care. I’m about ready to move into a assisted living apartment….. :pain:
Oh Alice, I’m sorry. I’m so tired of the same thing. It bugs me that my neighbor thinks I’m a nut to make this website, etc. Only my kids “sympathize.” Think I’ll go read the sympathy post & get a piece of chocolate – having sympathy for myself & you, at least! :hugright:
thanks Kelly, we all know that chocolate cures everything…LOL…Honestly though if I can’t start to “get it together” the assisted living may become a reality for my 49 looking 89 year old self. I’ve checked some out and they ain’t so bad, I can have my dog b/c she’s under 12lbs, can keep my truck if I want, rooms look more like apts.! and….drumroll….THEY CLEAN FOR ME! 😀 Will make no decision until I’m on Orencia and MTX for awhile and see how they work for me, and as always I will pray pray pray until God tells me what to do! Going for chocolate 1 for me 1 for you hugs sister
link
Funnily enough, i was put on prozac jan 2009, i have had RA symptoms for over 20 years now,but, i was diagnosed in april 2010 after being in a serious flare for over a year….so bang goes the theory that prozac halts the progression 🙁
Hi Sharon, oh well…so much for that. 20 years is a long time. Had you been misdiagnosed previously?
Im just really glad I have finally found a place where people actually understand! I appreciate this site, I know I am new but already I just love it.
Knowing that others are out there going through these same things make it feel like I am not alone. It’s nice to be able to just be real with someone instead of the automatic “Oh, Im fine” response.
Hi Angela,
Oh do you do the “oh, I’m fine” too? It seems it’s the only thing some people will accept so I say that sometimes too. Then I worry that it makes me guilty of lying or not helping RA awareness. It’s just hard.
Kelly, thank you for putting this on Facebook today! I know this was already discussed….but my goodness….it needs repeating over & over! It is a known fact that people with chronic diseases have a very high chance of depression, and that is something we should be treated for also….not just left to deal with it. This is a mighty thing for anyone to have to bear. I hope that everyone’s doctors are taking how we feel AND how we are dealing with this seriously.
Hi Roberta, I read recently ( was it in a link in Friday’s post?) that a large percent of those w/ RA are treated for depression. That matches what I see in comments/ emails. Why is it so hard to get the dr to understand how bad RA can limit what we can do? I’m trying to prepare for my own visit tomorrow & it’s always the same thing – how can I make the doc understand?
I’m right there with you. Not much more to add than that. I’m ready to crawl in the closet, too.
Mary, hope it’s a big closet so you can lie down flat & stretch out if you like. :heart:
Kelly, I really think that the reason Dr.’s will never fully understand what this disease does is because they don’t have it..and because of the broad spectrum of the way we get attacked…they just can’t possibly understand everything this does to us. I am a firm believer in moving on to another doctor if the one you have isn’t taking you seriously. AND LET’S CHANGE THE NAME…LET’S GET ARTHRITIS TAKEN OFF THE NAME!!!! That word gives us a bad rap especially when you have articles in magazine, commercials on tv, emails coming to your inbox about how easy it is to treat this, or cure this….so that we can go skipping down a sunny beach with life just as wonderful as can be!! No wonder we are depressed!
I hear that all the time Roberta. I don’t know if anyone will ever listen especially because of the “Arthritis” Foundation – there is a lot of money attached to RA. The best thing I’ve comeup with is Rheumatoid Autoimmune Disease. I’d use it on my website, but no one would be able to find me on the internet since that’s not what is used. But I hear you – and I’m thinking about it.
“A pharmacist just told me, “At least you are not really sick. We have really sick people.”” This – I’ve been thinking of a response for this comment. This disease is so severe that those of us who love life will risk taking a drug with a black box warning just to try and feel better. And the cost!! I just got off the phone with my benefits plan because Horizon BCBS has stalled so long on payments for my Cimzia that my doctor is refusing to treat me. And that raised all kinds of fear that now that my benefits plan knows how much I cost there will be some kind of repercussion.
Anj, obviously the pharmacist was not very informed about RA. It left me pretty speechless too. All I can think of is that, since I’m not in a wheelchair & I wash myself up before I go out to these doc appt days, I don’t look sick enough?
I totally feel the exact same way!!
I hear you, Tammy.
Kelly,
Thank you for sharing this site, I look at it every day, so I can feel some sense of normalcy. I think, if I am not the only one, then maybe it will help me feel better. I am still shocked by the lack of understanding and sometimes just complete stupidity of people that do not have RA or come close to knowing someone who does. You are doing a good thing, and you help people that may feel completely alone, and you will always be able to have that, even when you are feeling your worst. Keep doing these great things and hold your head high; I’m sure you will hear from me again. ; )
Take care,
Kelley Dellafave
Thank you for the encouragement Kelley. Always good to have a friend named Kelley :heart:
This is so right on it makes me cry..ughh..20 years this September
Patty,
I’m sorry. That’s a long time. :heart:
I just re-read this post. Kelly, with your wry sense of humor, I think you’ll like this: one of the bonuses of getting old, for me, is that now EVERYBODY I know has aches and pains, and I don’t have to be the only one!
Amazing, how much more sympathetic all my friends are now, as they say things like “Boy, I never understood what you went through all these years,till I got arthritis.” I’m properly sympathetic, as they moan and whine about 1 finger that’s a little bit affected, even my own sister. (Try 13 joints, and that’s only counting each hand and foot as 1 each!) YOU know what I mean.
Ahh, Lyn! Thanks for noticing the humor! It is part of the point of it all 😀 Yes, I know what you mean.
I wanted to respond to Alice. I feel so bad for you, dear. Just wanted to share some experiences with you–I live in senior housing, not assisted living, but I have the blessing of a wonderful aide for 3 hours a week who cleans and launders and takes out trash, etc..Here comes the wisdom part–since you would be so young, remember it’s JUST AN APARTMENT! You don’t have to take on the behavior of older folks just because they are your neighbors. My kids worried about that when I moved in here at 66 and many were in their 80’s. Now at 77 I still act young because I feel young, and associate with the ones who are positive and upbeat only. Best of luck, but I hope you can do something to improve how you feel, and getting household help is essential.
I absolutely feel the exact same way. I come to this site everytime I start feeling that I just can’t take it anymore and I don’t feel so alone! Nobody will ever understand what we go through or how we feel unless they end up with this disease also….I, of course, don’t wish that on anyone. It just seems so much easier to avoid people these days rather than have to explain why you aren’t working or listen to the stupid ‘cure’ they heard about. I especially get so sick of hearing them compare an old knee injury or such to my RA and how “WE” just have to deal with those kind of things as we get older……..WHATEVER. What hurts me the VERY MOST these days is that everything I have worked my ass off for all of my life is gone because of this disease. I spent the last three years of my nursing career gradually tapering down my hours into a PRN position so I could continue to work while I ‘got better’….during that time I exhausted all of our savings, all of my benefits (which became nothing after I gave up the full-time position), all of my social-life (had to save my energy to work), and my feelings of self-worth. When I could no longer work, I cashed in my 401K to try to save our home…..which we ended up losing anyway after I could no longer work. So then, when your employer tells you that they can no longer use you because they cannot depend upon you to be there (and you are only PRN with no benefits and no guarentee of hours)….(after you busted your ass for them for over eleven years running as a VERY dependable employee) and you apply for disability……….they DENY you and make sure that your family suffers to the point of not being able to go to the doctor and pay a copay or pay for your medication anymore…..but hey…..you can still work. I have been out of work for a year now fighting the same social security plan that made sure they took every penny out of my paycheck for ‘my safety net plan’ due them…exactly when it was due…..for the over twenty-five years that I busted my ass trying to be a contributing member of society. The heartache this diagnosis is horrible. If I could work, I would be working……..I would make so much more money working as a RN for one day a week than I would make in a month with social security. I loved being a nurse. I spent my life taking care of other people and now I have spinal stenosis, damage to my spine in every level from T11 through S1, knees that will not hold my body up, hips that ache, and wrists that can’t support the use of the cane that my rheumy though was the solution to my knees being so swollen….and the pain….oh man, the pain! Thanks for having this place for us to vent!
Tammy! Whew. I know it isn’t any practical changes, but I’m so glad you vented too! What an evil disease this is. & isn’t that ridiculous about the cane? Hello? my wrists, elbows,, shoulders are as bad as my ankles, knees hips feet! Won’t be leaning on a cane any time soon… 😛
I hope something gets better for you soon. :heart:
Big Hugs Kelly! Thank you for sharing your life so that we feel safe to share ours! You are a true blessing!
I was blessed, not only with PsA but also bipolar disorder, (heavy on the depression, light on the mania), so I’m very familiar with the gray terrain of despair. I fluctuate between sitting in my recliner all day, staring at the walls, putting on weight from the psych meds and the steroids (I also have asthma so have to take heavy doses of these frequently) and being immobilized by pain–vs. being ANGRY and wanting my health back…exercising when I’m able, going for walks, eating very healthily to lose the extra pounds, and being DETERMINED that these &*#% illnesses will not get the best of me. That’s where I’m at right now.
But I’m also SOOoo isolated from the rest of the world. I live in a very rural area and even when I can have social contact, I avoid it. When people ask me how I’m feeling, my pat answer is “hanging in there”–even if it IS just by my toenails!
My skin is affected by the psoriasis end of my disease,my spine is being destroyed by the PsA and my hands are so twisted and malformed that I struggle to pick up eating utensils to feed myself. Fortunately I have insurance and am on SSD however, my medicine copays ALONE are over $200/month. That’s not counting all the doctor visit copays and the annual $1500 deductible! My husband has told me he’s leaving me because I cannot contribute anything anymore to the marriage, Instead, I am sucking up his comfortable income and impoverishing us. It looks like I’m also heading in the direction of assisted living.
Dear Cynthia,
I’m so sorry for you. That is horrible to hear. I pray God will help people to get some understanding of RA so that your / our suffering does not have to be increased in these ways.
hi all,
I just re-read my comment and I would like to amend it somewhat. It sounds so very angry and DOWN! I truly do not allow myself to remain in that pit for long. I have a good God who gets me through each painful moment and I have a church full of people who love me and even if they don’t and can’t understand, they sincerely try to.
I am a firm believer in doing what you can while you can…and that is how I try to live. I am as active as my body will allow me each day…sometimes that’s a decent amount and sometimes not much; I try to accept where I’m at while I’m there and if it’s too down in the dumps, I try to change my attitude. I eat healthy and try to exercise and do yoga (I find that that really helps me to retain some flexibility in my joints and preserves my range of motion for as long as possible.)
Please forgive me for the complaining and self pitying way my first comment sounded…It’s not the true picture of “me.”
I didn’t think you sounded self-pitying anyway. Probably those of us who are also suffering don’t hear it that way because we know what it’s like.
Hi Cynthia, I did not see it as self pity at all!!!
Don’t ever feel guilty for how you feel, or feel you have to justify anything. In that moment, that is what you are feeling and thank you for sharing it. Trust me when I say, that there are many of us out here saying “I hear you sister!”
{{hugs to all my fellow RA’ers}}
Jill,
Thanks so much for your understanding. that’s what’s good about this site, people are honest and aren’t condemned for it. Anywhere else and we would be told “Get over it” or else that is what the person would secretly be thinking. Paranoia on my part? Maybe. It wouldn’t be the first time. But that’s how I always feel anyway, so I never allow myself to complain…until someplace safe like a journal or here.
Thanks to all of you for your empathy and compassion!
Oh sweetie! I came back for the same reason…….to say how bad I felt for complaining and being negative since God has so blessed me in other areas and I know that it can always be so much worse than it is now! I didn’t see your story as a self-pity story either! You sound like me! I would never share that much of my life like I did this morning usually but I feel safe on this site! We are among people that care and understand what we deal with! We need to have support! I consider this site one of my blessings from God!
Tammy, I sit here with tears in my eyes as I read everyone’s comments but none hit home like yours does. I was also a RN. All I knew was nursing, starting as a nursing aide at age 15,continued schooling to become a RN, and then completing my BSN during which time I became ill.
I was at first thought to have “atypical Crohns” with more intestinal problems with some joint pain. This progressed to a diagnosis of Mixed Connective Tissue Disease which called for me to have a IV port in for 7 years, to self administer Phenergan, to prevent frequent bowel obstructions. Then MRSA septicemia 4-5times, , then finally a dx of RA. I’m condensing alot of my hx.
Over all that time, I bankrupted my husband and I; was several times even ridiculed for having something they couldn’t ,at first, well -define, as this all started 25 years ago. I was lucky enough to find an excellent rheum and my kind, supportive GI doc that I worked for, til i had to also go to PRN status, til i went on SSDI.
Through reading your comments, it brought back all the losses, the depression, and the heartache, as well as I lost 3 babies to miscarriage, most likely due to autoimmune problems. I had very frequent hospitalizations, which has now caused me to have PTSD or close to it, whenever I have to go.
However, I too, choose to count the blessings of my life. I have processed through the losses and hope I can give others a hand up, which I didn’t have , back when I first became sick. Thank God that Kelly’s site exists, and that people such as you are willing to share your experiences. I hope we can help others understand they are not alone.
I always look forward to reading a new RA Warrior when I see it in my inbox. It probably sounds nuts, but I compare it to reading a Bible verse to seek strength and wisdom. Each time I read a new Warrior post, it seems to coincide with one of my own recent experiences with RA, even though I have had RA for over eleven years. Just the other night, I was going through (yet another) physically and emotionally difficult RA day as my poor husband watched and listened to me whining how I am tired of this and want to give up. He said he was sick of me being so negative, and I asked him if he would rather I pretend that I was fine and happy…Next morning i awoke crying because I realized how difficult it must be for him to watch me carry on so. I told him, I was sorry but also sick of saying I was sorry. I told him he put in the Rainbow bright movie, but ended up having to watch Murky and Lurky all day. 🙁
Well put, Robin. Murky & Lurky- :O
Of course I don’t really think of it as “whining” :heart:
RA really does mess up the chance of many of us ever having a truly normal life. I have had the wonderful fortune of having both an excellent MD and rheumy from the start and Embrel is continuing to work for me. My new normal is not really normal, but at least I can dress myself, comb my hair, and somewhat clean house, so I am grateful for that and truly understand the fustration of those who cannot or who still have to work. I am grateful to have a husband who is kind and although he had a hard time accepting what this disease has done to me, never rejected me. When I was at my worst, he was ready to move both of us into assisted living. We couldn’t afford it, and I really wanted to stay at home. Home turned out to be the best choice for us. I grieve for the social life and contributions to the community and church that I had to give up. I still do a little for the church, but I was one of those who never said no when asked and now feel like I am not really as valued by some people whom I thought were my friends since had to start saying no. I still handle the finances and paperwork for a mentally handicapped cousin for a cousin who otherwise is able to live on her own and is the picture of health. One the men at church actually asked me if I went to her house to check on her everyday. I was barely walking that day, am 68 years old (she is 41), and it was all I could do to keep from screaming at him, “Just who do you think needs to do the checking on who?) I was appalled at the lack of understanding on the part of some of the husbands who in my opinion are just downright cruel. I can kind of understand the way kids are because, well, they are kids and remember Mom doing all the stuff, but husbands are supposed to be more grown-up. Is the divorce rate for people with chronic illnesses higher than the general rate? I would hate to be married to some of those people and wonder if some people put up with the meanness simply because they feel like they have no choice. Thanks for the blog. I have learned so much and I don’t feel so alone. I have read that in addition to genes,which played a role in mine, enviromental factors may play a role in RA. My neighbor has it and a another lady about a mile from here has it. How weird is that, and does anyone have any information about the enviroment?
Yes, there are some studies about environmental factors. Here’s one link – click here.
I agree with you about many spouses. The stories people send me or tell in comments here spell out the truth of many people who cannot deal with the reality of RA and their denial causes great pain for those with RA. The lack of awareness about RA is what I blame for most of the dumb circumstances like you describe with the man at church. I deal with this in my life, too.
Hi Kelly! As you know I’ve recently had neck and then back surgery so I’ve been off RA meds since April and in a non-stop flare :pain: ! Went to my pain doc for refills yesterday and :rotfl: he says “As soon as you can get back on mtx and start Orencia you won’t need anymore pain pills ever again. Bet you’ll be happy then!” :smirk: HEEELLLOOO! What part of I have RA, OA and FBM does he not understand? What about flares or God forbid the meds don’t work? The pain meds aren’t all that great at relieving my pain they do, at times, knock me out for a few hours 🙁 so do I become a junky? Like everyone on here I Hate RA :pissedoff: and what it has taken from me-My Life! But I must rely on God to get me through any and all storms in this life because I know that I’m headed for a better place with a new Glorified body as HE has promised! :-)) I live, like you and everyone here, with constant pain and it’s no cakewalk but we do it. Some of you have great support systems and others of us don’t have any support or poor support but,we all have the knowledge that there is a :rainbow: at the end of all this :rain: ! When you’re feeling sad or ugly just remember that “You are fearfully and wonderfully made” the Bible says it so you can believe it :beauty: ! I Love You All! God’s Blessings! :rose:
Bless you, Alice. :heart:
& Thanks for writing encouraging words to the next one who comes by here to this post on heartache! If you can hope, so can we.
omg Cindy, reading your post made me cry. Partly because I feel/have felt your pain. The part about not being able to wipe yourself at age 48 did me in. I too have trouble with that and it is mortifying!! I live alone, and some days when I can’t wipe I have to try to shower. I am encouraged by my sister to take a hot bath. I would love nothing more, but am afraid if I am able to get in the tub, I won’t be able to get out. I, too, am tired Kelly. I, too, avoid going out in public. I do my shopping at night as the crowds are smaller. I’m tired of pretending I am not hurting, of hearing “you just need to get out and meet people”, of being depressed, of missing out on the family activities that I DO try to attend because I hurt (and feeling quietly belittled because I can’t attend), of trying to talk to my sister, only to be met with silence (which I take as disinterest, disbelief etc), of being told I am no longer a good mother (because I “don’t care”) by my daughter, of being so crushingly lonely and afraid to do anything about it because how could I possibly inflict myself on a man, of life being so damned hard. I’m tired of hearing other’s complain about how they don’t want to go to work, their husband is irresponsible, they’re tired. I would give anything to take on a stressful job or an annoying husband in place of what I go through every damned day. I’m tired of being told to “buck up”, “I wish you would meet someone”, “get a part time job”…etc. I am just flat f*$#ing tired.
I have a question that is kinda different from what’s here. If you are attempting to find your mate on an online dating site (I don’t get out much anymore to actually meet anyone 🙁 ), do you mention your RA in your profile?? lol. It’s humorous but also a serious question. Any input is good :). Thanx!!!
O my what a fantastic question. I guess it depends on how affected you are – whether it means you are disabled. Still, would you mention any other physical disability? Maybe not? Grat question.
Thank you Kelly for responding :). I am on disability, and am unable to do a lot of physical things…well most. AND I live in Montana where everything to do is outdoors. I still LOVE to go for drives in the mountains, but cannot hike as I once did. Seems all the men want a woman who can take part in their “active” lives. 🙁 I just wondered what others thought. Another kick to the proverbial groin of women with RA.
“She enjoys being sick”. This was a comment that has started drawing me into the isolation that many of you have spoken about. After six months of pain I was finally diagnosed with RA last month. Through that time I assumed when I spoke about my pain that I was receiving some empathy from those who listened. I was wrong. They are tired of hearing about it. After everything I have said they don’t understand. And the pain in my heart from this thoughtless comment is worse than the pain in my joints. This is not some hobby…it is a monster I am forced to carry with me wherever I go. It is always in the room. It effects everything I do. Now I can’t even talk about it. Yet I need to talk. The load somehow feels a little lighter, more bearable, when you can unburden your heart to an empathetic listener. Thank you for this blog. Tears come to my eyes when I read these posts. I understand. I know what you are going through, and I know you know what I am going through. Hang in there. Know that there are people who care.
Becky,
thank you for being here tonight & saying that. I’m right there right now. Its 5 years this winter & it is only worse & never better & no one wants to hear that all the time. It doesnt even sound believable to me & I’m living it. You said it all so well. At least I know I’m not alone either.
I’m sorry you were hurt by someone who does not or cannot get it. Of course this is not your fault. All day long, I read comments or emails like this – we are not ALL crazy or liars or whatever – it is just a really cruel disease. And its being “invisible” most of the time is another cruelty of it. :heart:
This is the first comment I have written anywhere on RAWarrior, so I must begin with a THOUSAND blessings for all you do and how fabulously you do it. I have just recently found your site but already linked your feeds to my blog
Though I wrote it earlier this year, last month I posted a (warning long) post titled
30 years of Rheumatoid Arthritis
http://inspiraven.com/blog/?p=1008
(comments welcome)
In it I postulated that “Of all the aspects to my life that RA has affected, I think the biggest blow was to my credibility.”
I also wrote my experiences and beliefs that along with the depression that chronic pain can bring RA flares come in with emotional chemical changes as well. Through the years my personal experience has been confusing, out of the blue emotional fragility precedes a flare up.
Does anyone else experience this?
I’m so pleased to have found this site!
The credibility comment is very “telling.”
Yes, I have experienced out of the blue depression and fatigue, and wondered WHY, to have a flare within a couple days! I wondered if that was just me!
when l learned RA sufferers usually have a shorter lifespan,to be “painfully” honest,l was relieved.to know l can die younger due to the torture of RA was actually a comfort to me.sad,but l know for many,they agree on their really bad days.
That’s really sad, Trudii. I hope you find relief before then. :heart:
Hi everyone,
Despite everything, sometimes I am reminded to feel quite lucky. My husband is great, even though he sometimes doesn’t quite get what I can or can’t do on any given day, he is completely supportive. When he gets an ache from overdoing things, he looks at me and says, I don’t know how you do it everyday!
Don’t think it’s all sweetness and light all the time, but after 13 years of active RA I am reminded that what I have may be a life sentence, but at least it isn’t a death sentence. (Yet anyway!)
Cheers
Tracey (I’m obviously having a better day to day!)
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Thank you for this site. I have found more information here than anywhere else on the internet.
Tonight, when dealing with the crazy emotions of this stinkin’ thing, I came here again. And, I found just what I needed.
Maybe one day my rheumy will figure out if its SpA or RA. New symptom for today…………right wrist.
Thank you again and God bless you.
Thank you, SSK. Glad to help and sorry you need it. Hang in there!!
I 4got 2 say that I am fed up of the no exit as well. I was told when I was first diagnosed that we would be treating the desease aggresively so that it would go into remission. 4 yrs l8r I’m still looking for that remmission. I actually vented to a doctor on this subject a few months aback. He was dumbfounded and had no response. Don’t tell me to ‘take it easy!’ Yes I have RA but I also have responsibilities. I have three children. I have a job. I hate the idea of giving up youth ministry in my church but that is where I’m heading. I can’t do it anymore. So where is my remission? I have done everything they told me to do and there is still No Way Out!
I look at my life and I know that my 19 yr old son had a better moher than his sisters do now. I also still thank God that he is a good son and picks up the slack. He’s a wonderful big brother.
I’m fed up of new ailments. I’m fed up of the Drs who are supposed to care for me acting incredulous when I say that I’m in constant pain, then asking if I’m taking my meds, then telling me I need to take it easy.
I need a majic wand!
Nicole, you put my thoughts & experiences into words almost exactly!
Thx Kelly,
Keep fightin the good fight for as long as U can. I’m not on often, but I am always happy when I come here, always relieved that I’m not alone.
Thank you for that.
Nic
Kelly ~ I love how you are able to verbalize what I am thinking. (I’m taking Celexa by the way ~ and it hasn’t improved the RA one little bit!) I really liked the counsellor that I saw the other day….she admitted that she knew little (or nothing) about RA. She talked about going through the stages of grief…so I didn’t lose it on her when she asked if yoga or exercise would help 🙁
I’m glad it went pretty well. I went for grief counseling too and I had the same problem with her not understanding enough about the pain & disability. I wonder if you could print out a an RA Factsheet or the RA Info Button page to show or – or another page from here to show her what you are dealing with. It’s kinda funny how we have to educate them, but imagine how much it will help the next patient who comes along.
Hi, I was diagnosed with RA 7 years ago. I’m now 71 and I’m trying so hard to keep myself on even keel but I’m not doing a very good job of it. I’ve been taking yoga thinking it would energize me but instead all I want to do is go to bed after my session. I’m tired of being tired. The Rhuematoid Warrior is one of the best things that could have happened to me because I know now that I am not alone in feeling like I do, physically and emotionally. Sometimes I feel guilty verbalizing my pain and discomfort because I know there are others who have been diagnosed at a much younger age than myself and will be much more disabled than I in my lifetime. Thank you for letting me sound off. It helps a little bit. God bless.
Hi Kelly
I arrived here tonight (Oz time) from reading and watching today’s blog, which led me back to a previous ‘You Tube’ and now here – exactly where I needed to be. God led me here I know.
Today I felt so fed up (I feel awful saying this) I spoke to God and said: (actually I kinda shouted it or rather wailed it) ‘OK I’ve had enough now – you can take me whenever you want’. I regret doing that and hope that he sees my tears as I type. I’m so so much more fortunate than so many others here not least of all you and yet whilst I can usually smile or laugh this morning I couldn’t.
My hands are slowly being affected this past month, my knees so much more painful and my back has worsened again. Yet today started out as one of my better days. Good enough for me to decide to drive a few minutes to buy a nice coffee for my flat mate and myself. She does so much for me that I can’t do for myself and it’s rare that I can do much for her these days. I checked on her and she was still asleep and so out I quietly crept (I do the creeping thing well with my RA feet and knees just not so great at the quiet part) and bought the coffee. This is where it goes downhill ……..
As I came back in, the cardboard holder that the cups were in bent spilling scalding hot coffee all down my hands and arms, all over the outside porch and just to top it off right under the front door down the hall about 3 feet and the door wasn’t even open yet!! My dear flatmate wakes to me crying with pain and probably frustration and annoyance too instead of a lovely coffee. Oh yes there was none left in the cups. Cold water followed by burn cream and light bandages and it appears I’ve escaped blisters – just redness.
Tonight as I type I feel relief at being able to say it as it is here.
It was never about the pain of the hot coffee, but I guess one of those last straws.
I can’t say that I don’t feel ashamed about wailing out loud to God or about what I said – but I know the only place that I could even consider writing what I just have is here.
Thank you Kelly and every single other warrior for showing me the way and sharing your journey.
Hugs to everyone and courage and strength each day.
I’m so sorry you went through this harsh day Kath. Please don’t feel bad. I think “God can take it.” & He knows anyway so it’s fine to say it out loud.
Thank you for your kind words Kelly. I normally don’t speak as openly about the ‘not so good days’ and like you more often than not use humour to deflect the less pleasant thoughts that creep in. This was one of my more ‘down’ days and I still feel a little uncomfortable in saying it as it was.
Yes – God does know.
Thank you for taking time to post a reply when I know that you are inundated day to day with posts, emails etc along with your normal day to day living.
God Bless you Kelly
I just want to reach across the wide ocean & say “I get it” to you the way you have for me!
I am newly diagnosed, but had diagnosed myself several months ago. I am familiar with the Kubler-Ross stages of grief. 1. Denial 2. Bargaining 3. Anger 4. Depression 5. Acceptance.
I am still in the denial phase. It’s hard for me to wrap my mind around the limitations this disease will make on my lifestyle. I have 2 small children and live an active lifestyle. This diagnosis has a major capability of changing my life for the worse.
I have faith in God, and I know he will not give me anything I can’t handle. He will strengthen my faith and my reliance on Him through this disease. We sang a song at church tonight…
You will never be defeated.
He will carry you through the storm.
I know you may be weary,
But he is your strength to endure
everything you need
That’s for sure.
Turn your eyes on Him.
I look forward to finding support on this site. Thank you for your dedication to others with RA!
I am so tired all of the time. It feels miraculous when I can go to the grocery store and cook in the same day! I used to do that without a second thought. I feel like people think I am just a lazy brat who complains a lot…. when I feel like I am just doing the best I can. My boss is so irritated with me. How many times can I say…. I am doing the best I can. Can’t you just believe me…. please. I always believe you…. Yee gads this is a frustrating thing and if one more person tells me I just need to do a colon cleanse I am going to scream!
I know, you’re right! I feel like I’m writing on serious topics and I get long emails or messages sometimes about bee-sting treatments or juice.
PS: Your comment reminds me of a motto of one of the featured bloggers in the blog carnival. I hope you’ll look at Lauren’s post when I put it up – probably tomorrow. You’ love it.
Kelly this is well spoken. I think of you as my ulter Kelly Ego who also happens to have RA, but seems to be much better at voicing the frustration of it, than I am.
…”Tired. I’m tired of hurting all the time. Also, I’m tired of having to pretend I’m absolutely fine and physically able around folks who can’t handle the truth. It’s physically so difficult to do that – I have to avoid people most of the time. Tired of losing that social interaction, but it’s too difficult.” These could be my words Kelly. I am also tired of a husband who keeps reminding me that his friends don’t understand what is
“wrong” with me…of course he is speaking for himself as well. I can’t fathom a pharmacist denying your illness and the meds you must take, but I ran into the same thing once—no returning to that business! Add all of the ‘little’ things that happen, or are said, or denied to the constant pain, and it does indeed at times lead one to depression, and undesirablle thoughts. I too, think of God then, and what Christ went through, willingly, for us. It keeps me going.
I guess my biggest heartache and denial is the physical limits RA places on me, at least. I was doing triathlons at 55 – my first!! And then when I decided to run a half marathon, that’s when my RA was discovered. I always said I didn’t mind getting older, I just wanted to be healthy and look as good as I could for my age. So much for that idea!! I still work out when I can and am trying to find less stressful things for my joints – like swimming full time. I have just ordered a water-proof Ipod. I can’t wait to get it!! But after 56 years of always being physically active, it’s hard to find fulfillment in just a walk around the block. But there are days when I’m thrilled to be able to do that! But I still am a full time stewardess, and I think I am very lucky to be able to work as much as I do, because I know there are a lot of RAers who just can’t. And that sucks!! It’s a vicious circle, hurting and aching if you don’t work out but if you don’t work out to some degree, supposedly it makes the disease worse. I feel like I’m chasing my tail!! And it isn’t pretty!!
Wow. Great post. Strong words. We need more examples of courage and truth like this one, because we all feel those feelings and are afraid to express them
GB
Thanks for this honest, heartfelt post…as always. Can sympathize with the person who said they want to go into a closet to die to escape the pain, suffering and isolation of RA. Am so tired of this disease and the ignorance of most people who just don’t understand and make little to no attempt to educate themselves about it. Where is that RA eject button?
As always Kelly, you hit the nail on the head and helped me and countless others feel less alone within the wreckage borne of our chronic illness/es.
hard to believe – I was just diagnosed with RA about 2 months ago and I’ve been on Cylexa for a few years, hasn’t helped me any
Thank you. Thank you so much for ‘verbalising’ what I am feeling. Nobody understands what it is like to live with RA unless they’ve experienced it themselves. Reactions like the chemist you described are hard to take, especially when it comes from those who are supposed to be closest to you.
RA never goes away. Even if it’s not a ‘flare up time’ it’s still there, it still hurts and it won’t ever be gone.
I know how you feel. I don’t have RA but my fiance does and she is going through this just as we speak. She had a dream of becoming a teacher and got her masters. She just started getting steady work as a sub and now she’s getting bad migraines and hasn’t even gotten out of the house other than to go to the doctor. I know she’s given up hope because she has told me so. I am trying my best to keep her afloat.
Dear Jose, please tell her not to give up hope. She is so lucky to have you reading! Please send her love from me & I know others here who would love to reach out to her! Keep listening to her and encouraging her that there will be better times one day.
There will be a doctor who can help her figure out the migraines too and manage them. Sometimes they are caused by the neck inflammation from the RA that’s very common, so she does need to see a doctor about the headaches soon in case something needs to be monitored.