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, you hit it out of the ballpark on this post. Everything you wrote I have felt or heard. It’s hard for people to relate to us because we keep pushing ourselves day to day to live as normal a life as we can. Most people don’t see us struggle doing simple little things in life such as walking down stairs (I can walk up stairs with much less pain than going down them), getting in and out of your vehicle, taking the lid off of a jar …etc. I’m also tired of the fatigue, when I wake up after 7-8 hours of sleep, why am I still tired?
I keep waiting for a drug that will attack RA like a police K9 chasing a one legged crack dealer, but until then, I’m fine with my RA too.
My reply may surprise you –
This post had been coming for a few days. I finally wrote it last nite. Spent lots of time backspacing. This a.m., I turned on the computer with half a mind to take it down.
First thing I saw was your comment. Thank you so much for showing up with encouraging words. We all go thru some of the same cr@p, don’t we?
Oh, YEAH!!!!
“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…”
This one got me, today. If I mentioned my pain everytime it bothers me, NO ONE WOULD WANT TO BE AROUND ME!!! So, yeah, I don’t hardly ever mention it. What would be the point?
Hoping for pain-free days for you, my friend. Or at least less pain.
Love Mer
Yep. You know how much it would mean to just be believed?
Same good wishes to you, Mer.
Yep…I get tired of it too. I’m going to see a new doc soon who uses antibiotic therapy for RA. You can follow my progress in my blog if you want. Minocycline is commonly used…not only for its antibiotic effect but also it helps to block the enzyme that is destroying the cartilage in the joint. I’ve researched it tons …there is a great book about it…I bought mine off ebay…”New Arthritis Breakthrough” Just something to check out if you want. If you are skeptical thats fine…just thought I would mention it 🙂
Hi Leslie, yes I do feel skeptical, but nothing personal. I’ve just asked others about the “science” and been told why it can’t work on RA. Please forgive me – I can barely understand the technical aspects of the reasons, so I cannot articulate them. :razzmad: Someone more qualified is writing a guest post for me on this issue soon. There are plenty of websites de-bunking this theory just as there are also those who believe in it – I hope you will look at both sides too.
EXACTLY. I, too, have isolated myself because I am tired of complaining, of not complaining despite the pain, of pacing myself, of researching and hoping and keeping my chin up. This is my life now. I know I don’t have cancer or some other short-term death sentence, and I am grateful for that. I’m grateful for my family, medical insurance, and the few friends that are really trying to understand. But, I just want to feel well again and RA really sucks.
hi kelly,
ur article has brought tears in my eyes.seriously it hurts me a lottt.but wat do i do? i cant even give up…i hv to got to college yet.its 17, hw will life pass…….
then i think if 10 years hv passed others will too….
u know when i was a kid,it dint use to hurt that much…because there r not tooooo much expectations from a kid…..i cud not walk ,it used to hurt but still i used to hv a hope “a few more days” this was wat elders used to say n i used to feel ok.but now,when i see my frends n compare myself……it sucks….bt i dnt hv any option….m lazy always aching….n hiding pain….pretending to b ‘ok’ ….
the “WHY ME” thing hurts the most….hope one day we all get cured of our aches n experience a pain free life….
when iwas b\w 1-5 years .i cud not remember hw i used to feel n all…sixth year of my life i remember a little that i was naughty n quick as i saw pics n all..after sixth year my laziness follows me till date….. :sidefrown: :weep:
Rachel!! You said what I tried so hard to say. I think that’s what I say in my mind: “I can’t even give up.” Lately, I’d really like to quit – but how?
Sending :heart: to you girl.
thanx for the heart sweety…lol :laugh: :rose: :rose: :rose: :rose: :rose: :rose: :rose: :yes:
take care.
What I don’t enjoy is going to the Rh. Dr. He is nice enough – just not very understanding of the day to day stuff – including the depression & fatigue. I don’t want to switch Dr.s’ (nor could I as my insurance plan only accepts this one.). I get good care from him – just not a lot of warmth or personal touch which would be appreciated sometimes.
I’m tired of it all too. I have a 9 year old daughter and I try to be active in her school. I always strived to be a dependable person. However, RA has robbed me of dependability. These women that devote their every second to the PTO appear to look down on me. I explain, I will help in whatever way that I can however, I may have to cancle last minute as I do not know if I will be able to get out of bed on my own or need assistance straight through getting dressed by my husband. And then explain why. They just look at me and then walk away. I am left standing there feeling indequate. I can’t begin to tell you how that makes me feel inside, and at that very moment I wish I would just dissolve into thin air.
Worse than ever for me is that at home it is just as bad. My husband also doesn’t get it. He tells me he gets it because has OA throughout his body, therefore he “knows exactly how I feel!” Believe me, I would never wish this pain on anyone, but the fact that he is so stubborn, I wish just for one hour that he would have my symptoms. Maybe one day instead of an hour, so he can have the 95 degree temperture, fire hot to the touch and no matter how many blankets on him, he could not get warm, all while every movable joint is screaming in pain! Just one day! I am sorry if that makes me sound mean. I am not a mean person.
In September I had the worst flare I have ever had, I was terrified to the point that it woke me up to get my butt back to the rheumatologist. I literally could not move a single part of my body. I was lying in bed needing to pee so bad. I called out to Joe and he came in. I explained I could not move and needed help. He proceeded to grab my hand and was going to shake my arm while saying, you have to move it and shake it out! I literally Screamed…”Don’t Touch Me!” I started yelling, we do not have the same thing. You will break my arm! He did get me to the bathroom, I could not sit myself down on the toilet and asked him to help me. He said, just fall onto it like I do. More yelling from me! Finally he assisted me to a sitting position and left me with privacy. When I realized I could not extend my arm to get the paper, I cried, because I knew I had to call him back in and ask him to do this for me. Most upsetting to me was that I could not wipe my own self! How degrading to have to ask for help wiping at age 48!
So, even through all of this which happened twice that week, he doesn’t have a clue and will not. He believes that I have arthritis. He does not and will not understand that I have a debilitating destructive disease. My rheumatologist tried explaining that there is no comparison between the two. My strong personality spouse interuppted the Doctor and stated, “pain is pain! and there is no difference”. My Doctor ended the discussion. I ended the visit feeling alone. I grieve in silence. My own father once said “your a hypocondriac”.
Grief is a loney place. I sure could make good use of your eject button Kelly 🙂
Thanks for the website, its less lonely here.
Cindy
Cindy, sad story. Sorry it happened. The “hypochondriac” thing because of confusion & comparing to OA – the suffering silently – It is all awful & it does wear on a person who is already in pain. Yes, it helps me to knowing I’m not alone.
Cindy
I’m so sorry that you have to go through what you do. I’m sorry that you feel so alone. My heart goes out to you my sister. Here, on Kelly’s blog, we’re not alone, and we’re sisters and brothers. I pray that your husband comes around. I know that must be difficult to live with on top of everything else, day in and day out. Know though that we love and support you here.
Nic
I try to block out all the assumptions people make and what they they think they understand about it. The truth is you cannot truly appreciate this disease until it is inside you.
The prejudice will continue. I always try to educate people but they just nod and pretend to understand. I am sure they roll their eyes behind my back and that is something I have gotten used to. Sad isnt it?
Dawn, Thanks for a thoughtful comment. I’m sure you’re right “the prejudice will continue” but something in me makes me want to fight back – I alternate wanting to give up & knowing I can’t. We must fight the 2-front war – RA and the way it’s viewed.
Hi Kelly,
I can and do relate to your every word here and feel sometimes that I am “too expensive” to maintain also.
I get a kick out of people who complain about the weather, or traffic or some other inane daily issue that will GO AWAY after a period of time… even better, women who martyr themselves because thev’ve given birth, (having never given birth myself), but would still trade ANY AMOUNT of labor with ANY ONE who will take 11 years of RA pain in return, because labor ends!… call me!
Keep up the good work Kelly, you’re awesome!
So obviously, I have less than most to grieve here comparitively yet – as I am only recently dealing with symptoms of RA for a couple of months now and still waiting an ‘official’ diagnosis, but I had to respond in regards to the depression piece.
When I initially went into the doctor’s office in pain and struggling – scared about why my body was suddenly no longer familiar to me and knowing something was WRONG – the main two concerns the doctor had were NOT figuring out what was going on with my body so much as 1) What drugs did I come in to get for pain and 2) If my lab work came back negative, I needed to understand that there was a good chance this was just ‘depression’ and we would need to consider that as my further course of treatment.
Pain and illness have overcome my body … overnight … and he wants to dismiss this as depression? Does depression cause you to not be able to unlock your thumb from over the palm of your hand? Run a fever? Drop small boxes of lemonade out of the refrigerator? Fall to your knees in pain from bumping a knuckle into a trash can? Take each stair on your staircase two footed for fear of your legs buckling? Fall dead asleep on your bed because you can no longer move at 3 in the afternoon while the sun is out? Oh … I see … yes – this must be depression!
I have already heard that phrase “at least if it is ONLY RA you can take Tylenol Arthritis. It could have been something really bad!” as well as “yeah, I got diagnosed with that in one knee when I was 12 … now I just manage the pain with ibuprofen” 😯
People truly cannot understand what they cannot ‘see’ or ‘feel’ themselves … and that is one of the additional symptoms we must deal with having this disease – being discounted. This is not a new idea for me as I have dealt with so many things and just ‘kept on going’ like the Energizer Bunny because the last thing I want is to be labeled as ‘weak’ … and I can already see that this too will be yet one more circumstance in my life that is going to be another opportunity to cause me need to love more, forgive more, prioritize more, grow more.
Forgive me for not being too excited about all that … standing here on the brink – but I know I will get there – and I hope I do it with the grace that so many of you do.
I don’t qualify to reach for the EJECT button nearly as much as most of you … yet. But I have joined the ranks of those who understand deeply how difficult this is.
Love and Hugs to you all.
My adult children already don’t want to be around me b/c I always have something for them to do. Like clean the ceiling fans, there’s a hard one for my 6’3″ son! I’m tired and nobody understands that it’s this stupid disease I AM NOT LAZY! It makes me even more ill when I look at my home, a place that used to always be clean and organized, is now dusty and cluttered to the hilt! :curse: I remember when I first got diagnosed and the GP I had at that time asked me if I was depressed I must have had a crazy look on my face when I looked at him and said very quietly, I’ll never forget it. “Depressed? Why would I be depressed? You just pulled the rug out from under my LIFE, I came here b/c of knots on my wrists and pain in my them you were supposed to tell me I had CTS NOT RA! Of course I’m DEPRESSED YOU MORON!” He gave me a script for Effexor ER and got out of there quick! Everyone knows that when the humidity is up and it’s raining I’m in agony so don’t ask-that means the last past few days and today, I start PT in a few hours. Ok my spoon and I are done complaining and will go about the CHORE of showering which will be repeated after PT we have such a lovely disease…. :pain:
IN GOD’s LOVE :rose:
I totally understand all to well everyone’s stories. I am in pain 24/7, some days better than others, yet keeping up the pretense, makes me so tired, it’s depressing. For someone who was sooo active and now limited, that is also depressing. I know people around me try to understand, yet it takea a TV program or article on RA for them to take notice. Keeping up the pretense is the hardest for me, I hate for people to feel sorry for me, but now the older I get the harder it is.
Agree we need a TV program or at least a commercial to tell the truth. How about a public service announcement from the Ad Council like they get for every other disease?
Kelly – you totally ROCK, GIRL!
I try to hide my disease as much as possible – it just isn’t always possible. I am only 50 but I move like a 95 year old. I do not want this disease, I do not want to be sick. I want to be able to go grocery shopping, clean my house and go to work like a NORMAL person. Not like a crippled, hurting person. Depression – it comes and goes.
I thank God for HIs grace and His strength – it is the only thing that get’s me through…and the narcotics, prozac and MTX…
Hang tough, Kelly!
It’s SO normal to be tired of the pain and the disability and the misunderstanding. That said, it doesn’t make it any easier. Antidepressant meds,counseling at times, adequate
(attempted) pain control, and an understanding doctor have all helped. But there are still days when I am feel SO down. I try to remind myself that my mood will improve in a day or so, and it does. Cindy-my heart goes out to you as you struggle for your husband to just provide compassion and support. I’ve also been thru situations like the PTO moms who don’t understand that we can NOT predict how we are going to feel from day-to-day. It makes your self-esteem do a nose dive. I’m glad we have this forum to seek support,gain understanding, and just be able to say: “I feel lousy today” and be understood and accepted. Thank you to EVERYONE who is a fellow RA Warrior.
Nicely done Kelly,
I understand why you had self-doubts about posting this, and then considered taking it down, but you need to know this was a GREAT post. You were absolutely right to share it. Thanks!!
I appreciate the sentiments you share. This RA thing has not been easy — I’ve always been a strong, active person. 6’2″, 220 lbs, used to carrying 70-100 pound backpacks up mountains for days on end.
Some of my “friends” now snicker and call me ‘weak’ (or worse) for having to slow down, and carry smaller loads (50 pounds max now). What I’ve realized is that these people are not now, nor where they ever, really my friends.
My friends are supportive and understanding. They may not understand RA and all its complications, but they accept that they don’t understand but support me nonetheless. Indeed, my TRUE friends are proud of me for continuing to pursue my outdoor lifestyle. They are impressed I can still carry fairly large loads, and hike and climb even if it slower than previously. Heck, since my onset, I’ve even been enjoying regular shoulder and back massages in camp from several true friends.
Bottom line, one of the most important lessons from this RA experience is this: Know who your true friends are, and focus on them. The rest are mere acquaintances and don’t deserve the time and effort we put into worrying about what they think of us.
Stay strong, and keep writing.
Dan
Thanks Dan. That means a lot.
BTW: Who would be brave enough to snicker at you? I thought that only happened to the girls. :laugh:
KimbraLee-just had to respond to your post. My heart goes out to you as well as so many others. I too was dismissed at first except to have the recommendation of a psychiatrist.(Depression did come but much later after years of unrelenting symptoms.) Instead I found a wonderful new rheumy who I’m still with.He did NOT think I was imaging things even though initial bloodwork was negative and watched things as the inflammatory arthritis developed. He started treatment on his observations regardless of the negative labs. I think it was hardest dealing with the RA when I was at your stage-sick with fevers,joint pain, nausea, fatigue, etc but NOT officially diagnosed. Hang in there. You have so many here to support you. You’ll be in my prayers.
I’m with you! I’ve had RA for two years, and I’m now in what the Rheumy categorizes as “Clinical Remission”. This still does NOT MEAN that I am not weak, tired, and achy!
BTW, Celexa is actually Citalopram, which is much more effective than Prozac for anxiety symptoms (and we RA’ers have a lot of that!). I take Celexa, but unfortunately, it does not cure RA.
Darn. Maybe it was a bigger dose… 😮
Before I was diagnosed I would ask for the kids (teenagers) to do things for me – get things from another room, help with the cleaning, etc. I got so tired of them calling ME “LAZY” because I didn’t want to do those things myself! I tried to explain that going down a flight of stairs is very hard, that I’m tired ALL THE TIME, that it’s a struggle to come home and cook dinner, much less keep a house clean. But they still think I’m LAZY.
It’s a terrible thing when you get more sympathy from your doctors than people that supposedly love you.
Chris,
Unfortunately, I know just what you mean. Thankfully, it’s not my kids though.
Chris, you just need to remind them that food and shelter do not come free. Even if you were perfectly healthy, they’d need to do these things anyway. Just part of being a family – they keep it functioning. I’ve found taking the focus off my illness relieves those mixed guilty/rebellious feelings my teens get so confused about. Straight rebellion is so much easier to deal with. 🙂
Kelly,
You have a great gift to be able
to describe our collective experience so
well. Everytime I read your articles I feel
like you are describing MY experiences, just
as so many others do. You are giving me
a voice and for that I am so grateful.
Rosanne echo’s my sentiment. You have a gift and your gift brings relief to those who read this blog.
I read this and felt sooo relieved; not because of your pain, but because we can feel that we are in a vacume and that no one understands. If you try to make people understand you feel like ur complaining or dpressing them and still u end up with the dissatisfaction of knowing they will NEVER get it.
I have sometimes wondered if there were not a convenient rock to crawl under and die. I hate when ppl tell me I’m negative if I tell them I have to prepare for the eventuality that I may not be able to walk in future. I want to shout that I am not negative! That this is my reality! No one gets it and as you rightly said ppl seem to think that its gone away if you don’t mention it. It is frustrating.
I tend to have these Charlie Brown moments when I just raise my head and shout “AAAAAaaaaaaaaaaaaarrrrrrrrrrrrrgggggggghhhhhhhhhhhhhhh!!!!!!!!!!!!
It helps! 😉
It’s bad enough living with RA, but the lack of understanding is an entirely different pain. I remember years and years ago, when I was working and before two knee replacements, that I found out my coworkers thought I was “reserved” and had NO CLUE that I was in pain. I was astounded. I was in *constant* pain. But no one could relieve the pain for me, and I’d literally have had to be mentioning it all the time.
But it’s the friends and family whose lack of understanding really hurts (thankfully not everyone!) These are people who KNOW I have severe RA, that I’ve told OVER and OVER about the difficulties of not being able to predict when you will have a good day that will allow you to do something social, about the limitations that differ depending upon which part of the body is acting up, and so forth. I find it frustrating to have to re-explain the same thing over and over, and so I have distanced myself from some people as a result. That’s an extreme measure for me, but it’s either that or I am really going to bite someone’s head off!
Mary,
“But it’s the friends and family whose lack of understanding really hurts (thankfully not everyone!)” Yes, I agree.
“I find it frustrating to have to re-explain the same thing over and over, and so I have distanced myself from some people as a result.” YES.
And like you, I know they know because I’ve told them “over and over.” What else can we do but like you said – put distance there?
Btw: you also said “lack of understanding is an entirely different pain.” I wrote a post with almost the same name here.
Kelly,
Thanks for the post….unfortunately it describes what I’m going through and what almost all of us with RA are going through. Just today, I was asked if I wanted to run errands…normal things…I had to say no as my knees and ankles are so inflamed and painful I can barely stand to walk around the house. I keep pushing myself and working out thinking getting stronger will help, but this pain is awful and I don’t know if I should push or not! I would like an Eject button….best thing ever if I could get RA out of me.
Thank you for sharing yourself so vividly with us. My mom has RA, and this blog has helped me start to understand what she might be experiencing. I don’t think I can begin to imagine what all of you are going through, but I hope to at least be able to support her through the bad days and encourage her on the good ones. Your stories help me see a little of what she might deal with daily, thanks for sharing the good and the bad!
Keri,
What an angel you are to your mom for caring enough to read this. O:-)
Home run post Kelly. You know what I am tired of? The stigma attached to living in the reality of what RA does to a life. Most RA’ers I know don’t camp out in the feelings of despair and loss that come with this disease. But we have to visit them once in a while, or we are living a lie.
You know what else I am tired of? Having no margin of energy to deal with emergencies that come up. Last night, I was in the ER with my 16 year old. My husband’s working in another city, I’m flaring in between making the switch from Orencia to Cimzia. And the ER is packed, and my son has a nail bed injury to his finger that needs emergency care.
And the whole night I am feeling overwhelmed, on the edge of tears, and hiding my pain so I could tend to my son and comfort him. Small disruptions that I used to be able to flow with can now derail me. I have no margin to confront emergencies with. I hate that.
Your honest writing, though, lets me know I am not alone, and I am not that bad off, really. Thanks for leaving this post up, I needed to read it.
Hey there! First time posting here!
Frustration #1.)I was just diagnosed in October with RA, but ever since my sister dragged me walking miles in Paris and in Germany up hills, down hills, me complaining all the way last March, I knew something was wrong with me. It took me having a CT scan for what they thought was appendicitis, but found nothing except,”maybe a little arthritis in my back,”(found this out from an on-call doctor calling me in some pain meds for my “phantam pain”} that made me go to a rheumatologist for both my hands which were so swollen I couldn’t close them and my back! I thank God for my PPO allowing me to refer myself! My GP sure wasn’t going to do it! He recommended braces for my hands, because he was sure it was carpal tunnel. Braces never stayed on my hands at night because they hurt so bad I would rip them off.
Frustration #2.) I thought a diagnosis would make me feel better because then I could do something about the problem. It did make me feel less crazy LOL, but then everything takes so long to make a difference in this disease.
Frustration #3,4 and etc.) I hurt. I hurt every day.I hurt every hour, yet I get my behind up and out the door for work. I walk my dog. I’m tired ALL the time, but I have to function or I cannot pay my bills. I’m afraid. I’m scared I will have to find new work. Without a college degree, how will I support myself on less pay, having to start a new career path. I’ve worked as a manager in retail for 22 years.
I am lucky to have people around me who do understand, but there are those who do not. I would love an eject button for those who say you don’t look sick!
OK, in my grief stages, I would say I’m at anger LOL!! It was a great post which hit the nail on the head for me. I’m tired of being in pain. I’m tired of explaining this disease. I’m just tired! Nap anyone?
Welcome, Maria.
Very well stated. Many of us share the similar concerns. I hope it will help some to know you are not alone.
I’m amazed at how many of us feel, think and do the same when it comes to this disease. “I no longer feel alone anymore” it has been a long time since I’ve been able to relate to others, only through my journal did I express my anger and hate for this disease. As I read Kellys article and the comments that followed, I feel validated, I feel normal, I feel likable, each comment is strong with true emotions and with backbone! I couldn’t express myself any better than what has already been said. For those of you having a hard day, take peace in knowing we are all with you and do understand. Its especially hard when its all new ….. In my early years of the disease there were no web sites and support meetings , so I went about feeling no one understood, I would tell myself “I won’t give in, I’ll continue to try and look normal, be normal and think normal… but as days turn into months then years, my disease would chip away at me my determination to be normal wavered. RA, no matter what type it is or how it affects each person…. seems to have one thing in common with all of us… it does as time goes by “chip away at our lives”, we need each other to validate our feelings, read of others and how they stead fast through their pain and disappointments. My only wish would be to reach those who feel alone and feeling less then normal….. Today….I’ll accept one of those Eject Buttons! and proudly carry it with me and eject any negative thoughts I give myself about “not being average or normal”. Thanks Kelly as always you seem to tap into those emotions and feelings that are all too well known to many of us, your a true Warrior and I Salute you!
Oh yes…I look at all sides when it comes to my health. I worked as a nurse for 13 years before having to find another job that didn’t involve as much stress or being on my painful feet. I was never one to go against the grain on anything medical. But, I believe sometimes other issues come into play and we do have to be our own advocate. It’s amazing that we will agree to put poison in our bodies because a rheumatologist gives it to us but we are skeptical of milder meds because that same rheumatologist didn’t offer it. There are plenty of rheumatologists using antibiotic therapy though. I will know how it works for me as time goes….like the old saying is..time will tell 🙂
In my reply here – above, I did not say that I was skeptical because a rheumatologist did not give me that as therapy. I took time to explain why I am skeptical.
And no one who has read much of this site would say that I took RA disease treatments just because a rheumatologist gave them to me either. I actually went & found a rheumatologist who would give them to me in order to treat my disease. RA spreads like cancer & I was hoping to fight the RA & outlive my grandfather who died from it prematurely.
There are also several things that have been prescribed to me by rheumatologists that I refused to take. I take what will fight my disease and I do that with my eyes open.
Bravo Kelly for this post. Reading it gave me tears and at the same time relief that I was not the only one with these feelings. I can relate with just about everything written here. I would write more, but having one of those too tired to think and make any sense fatigues, and go figure I am at work and have to accomplish something here. Just making it through a work day sometimes is a struggle.
I am sick and tired of being sick and tired. I’ve been fighting RA now for almost 20 years and I’m tired of having a few good days and knowing that it won’t last. I know that’s a bad attitude, but that’s how it is. I’m tired of ppl who love me and should understand and know better, telling me when I struggle to just go back and replicate what I did when I was feeling better. How did you get there? Do it again and you’ll feel better again! Aaaaggghhhh! So far as the social stuff goes – I’m just plain paranoid – even as I write this I’m afraid of how it will be received! I assume everyone is annoyed or exassperated or impatient with me – bc I’m impatient with my own body! I get what you’re saying and I can’t express that to you effectively enough – but I do get it!
I hate my internet connection for ditching me today…and that I got to read your post 7 hrs late! I think if I took an x-ray of my brain, I would find exactly what you wrote up there!! I am tired…I am so tired of pretending to be strong all the time….tired of pretending that I believe its going to be fine, whereas I get petrified when I think of what could be in store for future….
please please….let me be fine without RA!!
Thank you, Shweta! 😎
Hi, Kelly! I love ya, girl! Keep telling it like it is. {Hugs!}
wow you got really defensive…I was speaking about myself actually….
I can see where it sounded like I was speaking for everyone and I apologize….brain is on coast right now 😛
Thank you, Kelly, for being “real” and giving us that opportunity as well. A positive attitude is so important but we need an outlet for the frustration that comes with a chronic disease. Right now I am tired of the high cost of my new reality-physical, emotional, financial. Cindy’s toilet story is such a good example of things we deal with. I am supposed to be the care-giver, not the one needing help. I am losing my identity. And just when the methotrexate really starts helping and hope returns, my labs show an elevated ALT. I don’t know whether to pray that I can continue to take methotrexate or be afraid of harming my liver. Thanks to everyone who has shared-it helps and an eject button is brilliant.
Kay,
Oh, I’m sorry to hear this. I hope the levels improve & maybe you can just stop the medicine for a while & go back to it. 🙂
Leslie, I just read your post and it did sound like you were making a crack at Kelly..Hard thing about writing, no one can hear your tone of voice. I would have responded the same way as Kelly.
Kelly, my SIL told me recently that b/c I don’t say much except for when I’m having a really bad day, they often forget I’m fighting this disease. Mind you she lives at the end of my street and I see her almost every day. I try not to let the RA run my life but it does most days. I try to stay positive and optimistic but, living in constant pain makes it difficult. I grieve my old life. I wish I had it back but, know that won’t happen.
Dearest Kelly…and my fellow RA’ers who have posted here today…I hear you, and you all ROCK!
I too am tired of always being Ok….I am a new “member” of this support group. An unwilling member to a group that I would rather not belong :). Kelly, I am so thankful for your blog. I stumbled across it about two weeks ago, in an effort to try to find some words to explain my pain to my spouse. Your blog came up and I have been so grateful for it. It truly gives me hope where there was little. I was thinking that I was going to have to live in quiet desperation, thinking that I was crazy, until I came across your blog.
I was diagnosed with an aggressive form (according to my Rheummy) of RA about 4 years ago, and since have been through so much it is frightening. I have been through plaquinil, Methotrexate, Enbrel, Remecade and now Orencia. I thought Orecia was my savior, as it “worked”(read: allowed me to not be in constant pain, only at night and a some flair ups) for about 6 months, but now it isn’t working anymore. I have been suffering rejection with them all. My body is allergic, and even with orencia I have to take large doses of steriods prior to the injection, just so I don’t break out in hives and suffer breathing problems…now I don’t know whats next, I am truly frightened.
I am a mother of 4 and I have to be Ok… I have to go to booster club, and play practice and track meets and soccer games and…….. life doesn’t stop for me. I have had to quit my job as a preschool teacher (which I loved) because I can’t get down on the floor anymore. I have quit all the things that I loved, no more bunco, or book club, because I have no more energy at the end of the day. I have lost contact with most of my “friends” who have become tired of me not being able to go to “Mommy boot camp”, or wine tasting or shopping with them. They are getting fit and they look at my lumpy, overweight body with sly looks of disgust.
I have a hard time bending over to pick up the kids clothes off the floor, my kids treat me with a quiet disdain, my husband doesn’t want to talk about “it” because he can’t fix whats wrong. He is just “sad” that I can’t ski, or bike with him anymore. but maybe tomorrow I will feel better? He asks hopefully??? BTW whats for dinner??? I am alone.
I too grit my teeth as I walk down the stairs or whimper in pain when I have to stand too long at an event, yet I continue to stand, as I know that if I sit it will be EVEN more painful when I get up. I collapse in my too hard, coil spring, painful bed every night at 9:00, HOPING that tonight I will sleep through the night. I have begged my husband for a new bed for 2 years, but he doesn’t understand the need. I get up at night and sit on the couch, sometimes sleeping sitting up is better. Then, my husband thinks I am trying to get away from him, sigh!!! I often can’t breath right, or think correctly, I thought I was crazy until I read your blog about sleeping/brain problems.
It is so nice to know that I am not alone. If you met me you wouldn’t know that I am dealing with all this. I am known as an outgoing positive person who is always there to help out others. well, I can’t do it anymore. I am not ok I am sad, disheartened and frustrated with my body failing me. I am tired of constantly putting others feelings before mine. It sucks! This disease sucks and it just keeps on sucking. I too would like to find that EJECT button!
Sorry for the length of this message, but it really helped to write it all down. Thanks for listening.
Anne, reading your post, I thought you were me! I too live the same live you are living. I have gone through all the same medications. Like yourself, with all the infusion therapies, I have severe allergic responses ending up as an inpatient as I go into anaphalatic shock. Enbrel worked wonders, I felt “normal” for 6 months. Medication stopped working and back to trial and error. With each humira injection, I developed diverticulitis, eventually having to undergo colon resection surgery. Just took my 6th month injection of Simponi which seems to have stopped working. I feel for you! I feel for all of the Warriors! Thank God we have each other.
Hang in there. BTW, what’ for dinner? That’ my favorite question of day too! EJECT!!
Cindy
RA Warriors, You all ROCK!!
Hi Anne. Waving hello & welcome to you. 😎
:heart: Anne, I’ve been meaning to get back to you on the mattress thing. I want confess that no one ever acknowledged my need for the better bed. I decided to take matters into my own hands and research & shop & order that bed. I used Original Mattress Factory because it was the best deal I could get – Anyway, I did it without anyone else’s acknowledgement that it needed to be done. Of course only you can decide, but that was my decision. It has been part of my RA journey to learn how sad it is that others do not realize my needs, but it’s ok if I have to get what I need by my own initiative. I hope that came out right. Email me if you need to.
Krista….I apologized to Kelly. I apologize for making it sound like I was talking about everyone on this blog. I was speaking for myself as the typical RA meds are toxic to me. I do not want to take them any longer. That is MY personal decision and I am happy with it. Everyone has a right to their own opinion. I have friends having problems with them too. So, when I said “we” basically it was in reference to people I know having issues not particularly anyone here on this blog. No you can’t hear my tone of voice so please don’t assume I am being contrite. I am not that way..but I do speak my mind. I will apologize when necessary and I did. It does not change my views on these medicines for ME though. This post sounded as if Kelly was having difficulty in her life and I just suggested what I was planning to do. I’m sorry if it was offensive to anyone here…that was not my intention. I wish everyone well in this journey with RA.
Hi Leslie,
I can see where you’re coming from and i didn’t take offence at your post and i understand that we all have our own path with this disease. I’ve given up on the stronger meds myself and I’m realising how few of us can do this. I chose to manage my disease my way and deal with the pain rather than try to treat the progression of the disease. I have the deformed hands to prove it.
The only good thing about these lumpy, bent hands is that it provides conclusive evidence, at a glance, that I genuinely have RA and people don’t think I’m making it up. They often don’t realize that I have pain everywhere else in my body too, but hey it’s a good starting point to their understanding. It’s amazing how much value a visual aid can be! Seeing really is believing, plus on the dark humor side, they make a great accessory to my witches halloween costume! Gotta find something amusing in this! PS my nickname at my last job was ‘crab hands’ cos all my fingers were going sideways! Well it was hilarious at the time! You know you’ve got great friends when you spend most of your working hours having a damn good laugh, with them, at them and at yourself!
I always joke that at my age (heading rapidly toward 47) all my girlfriends are worried about gravity sending everything south, me I have to worry about things heading east and west! My left hand fingers are starting point west and my right hand fingers are decidedly eastward bound! My toes too!
OK well that was my laugh release for the day – I hope I haven’t offended anyone, these comments are all about me and my own experience, so don’t take it the wrong way. It’s important to maintain a healthy sense of humour, (at least I have something that is healthy)!
Cheers
I’ve read most of the posts on this thread but something about yours just made me hit’reply’! I had surgery last year on my worst hand, receiving artificial MCP joints in all 4 fingers. I had no complications and it has been amazingly successful. However other parts of me are still a problem! Daily I’m thankful for my caring and understanding husband and my useful sons to help me out with things I cannot manage but I try to keep as active as possible. I’m in a Search & Rescue team with my dog and walk miles MOST weeks but sometimes a flare up means I can’t do it. I find this SO frustrating and annoying aside from painful of course. Everyone’s messages I’ve read on here are helpful to me, despite some of them making me cry. Its SO good to find others who do know what it’s like on a bad day! I wouldn’t wish this disease on my worst enemy but somehow we deal with it and at least here in England I have free health care to eae the burden. Blessings to all of you.
Anne,
Your post bought tears to my eyes, for you and for me, hang in there!
Pingback: I quit! Not. « RheumaBlog
Today I sent an email to our friends telling them that I could neither host (it’s my turn) or even attend our monthly bridge dinner parties. I just simply don’t have the strength. These are friends who don’t really understand RA so I used my eye as an excuse (bad cataract surgery) which is true as well, it just seemed easier. I guess the only way out is in a wooden box which just doesn’t seem like a good alternative just yet…ciao
Anne,
Your post made me cry. I am your age, and I am a Mom. If you feel like you want to talk, write to me at RAblogger@yahoo.com
I have been through everything as well as ALL the drugs you’ve tried plus one. We have a lot to talk about!
– K
Hi Im new here and came across the site looking up how CT SCAN s may effect someone with RA. Didnt find the answer lol but found this. I was diagnosed with RA 6 months ago. I had been having a series of problems that doctors kept relating to stress. 1 day at work I had enough. Along with everything else I was having horrible blurred vision in my left eye. So I went to the urgent care and the PA listened to me carefully and decided to give me a ANA test. I found out soon after what I had. Completely shocked but made sense with all my symptons. I ended up having to have cataract surgery which everyone was surprised at the dr visits cause I am too young. I had my tear ducts blocked last week it helped at first but I cant tell now cause my eye is achy. I do customer svc and sales for the phone company. And it’s been very stressful. I had to take time off for all this and now that Im back it’s soo hard. Much is expected of me cause I was a top seller. Now I am like a fish out of water and just cant find my way back. Im divorced for 10 years and single raising my 2 boys (14 & 16) who really dont understand. Thier dad died last year during the summer and that’s when I had more problems not knowing it was RA. I hear often how good I look although I sound terrible because it has also attacked my voice and my cords are always swollen. Since I talk all day it’s hard especially when customer s say I cant understand you. OUCH! I am getting depressed. No one can understand why I am still single because of my good looks and that’s depressing as well. Just being alone, no energy to even meet anyone. Im afraid as I get older if I get bad off WHO will be there to help me. Sorry so long I dont share these feelings with anyone. Im glad I found you. Thanks for reading and sharing.
Hi Michel, Welcome. Thanks for stopping by & sharing. Sounds like you have been through a lot.
OMG…….this has been my world for the last few months. For me, it started around the holidays. I was bound and determined to have my “normal”, pre-RA Christmas. I made my homemade pierogis (an all day project). I did a 7 foot real tree. I put up outside decorations, and inside ones too. I baked cookies, granted not the 12 different kinds I used to, but I baked cookies. I made a huge Christmas Eve dinner for friends. I baked bread.
And then I spent the first 2 weeks of the New Year in bed.
Crying.
I hit bottom, and haven’t been able to drag myself back out, because like you I AM TIRED.
Of only working 3 days a week.
Of having a sucky, no responsibility, no challenge job, which is all I can handle, and for which I am grateful, since it gives me insurance.
Of wanting to go back to bed after I’ve thrown on a bit of make-up and showered.
Of not being high-maintenance, and giving a damn about how I look, so long as I don’t smell.
Of absolutely EVERYTHING I do taking 5 times as long for me to do it, because I feel like I’m wrapped in bubble wrap and can’t move.
Of deciding if I make dinner, or do the laundry.
Of having people wonder WTF is my problem.
Of people asking me “how are you”, knowing full well that they don’t want to hear the answer.
Of low heeled (or no heel) shoes.
Of not being able to find a comfortable position in bed, or at my desk.
Of not being able to stand at my kitchen counter for more than 10 minutes.
This morning, as I was going to make coffe, I couldn’t get the coffee filter to separate because my fingers felt like sausages at the end of my hands. I’m done with that.
I’m done with it all, and I honestly do not know how I can live the rest of my life with this. I’m relatively young, and the thought of another 20 or so years of feeling like this is terrifying.
Yeah, I’m fine considering I have RA, I know many, many have it worse than I do. But I have it pretty crummy too. And when I talk about it to the non-RA world, I feel like a frigging whiner, because I know that’s what they think I am.
Well stated. Thank you, Roberta.
Roberta,
Slam dunk I hear ALL of that!
I am very grateful to have this blog, tired of having RA, constant pain, judgemental pharmacist (like everybody that uses pain medicine to at least somewhat manage the pain, needs an Intervention or dr “aetna” to decide what treatment , meds etc my disease requires. There should be requirement that drs offices, pharmacies, DRS, have a consult with a person with RA, to get an idea.
Casey, YES!
Roberta….I understand SO much of what you are saying! Standing for 10 minutes, fingers like sausages, low-heeled shoes (I usually just wear flip flops) and wanting to go back to bed after a little bit of exertion. I took my daughter to the fair last fall and we walked around for three hours…It took three days to recover! I hate RA!
Anne…wow I just read your story…you and I must have posted close to the same time last night. I feel so bad for you. It must be hard being married with RA, especially to someone who doesn’t understand. I’m a single mom and while that can be hard sometimes, I don’t think it would be as hard as what you are going through. Maybe through these blogs he can understand more as others are going through what you are. I hope he will read them and our stories. Take care.
Kelly ~ Next time you consider taking down a post, remember the response you got from this one. So many times I am in tears from reading even the most basic of your posts. Just because there is somebody that understands.
I want to give cyber hugs to all. I am one of the very fortunate ones that has a loving support system. I can’t imagine hurting the way I do…and dealing with family that doesn’t understand. Even my FIL made the comment once that he knew what I felt because he has arthritis in his knees. My husband quickly jumped to my defense and said FIL should look up the difference, that RA was totally different. Of course my family still expects me to keep the household running because most of the time, if I am able, I try to keep their lives as normal as possible. They usually jump and help if I ask or if I am still in bed when they get home from work or school. I hate keeping my pain and struggles to myself, but I refuse to give up. This evil disease makes it really hard sometimes…but I don’t want my kids to remember me leaning over the commode because my meds make me sick. I don’t want them to remember me laying in bed for almost two weeks because I was covered in a blistering allergic rash. If I can get up and fix dinner…it’s my absolute pleasure to give them that loving memory of me fixing their favorite meal. I know that I have to start my prep in advance to give myself time to rest. I enjoy knowing their friends love coming to our house because I’ve always got something good for them to eat. If I have to suffer in silence…I do so willingly and will for as long as I can get out of bed. Darvocet is my friend and I don’t give a rats behind if my pharmacist gives me that holier than thou stink eye. But only one has. Our main pharmacist saw me when I had my allergic rash and we had a nice little conversation about RA. Now he always has the sweetest smile when I pick up my meds and asks what kind of day it is.
Loving, gentle hugs! Know that we all have our own pain and struggles. What makes the difference is knowing we’re all here for each other without judgment.
Thank you SO much Chelle. You wouldn’t believe how often I do… 😎
So glad to hear the good example of your husband, by the way.
Thank you for this blog. I’ve only been dealing with this for a little over a year and the thought that the rest of my life will be in increasing pain scares me. I’m 46, have 2 grown children, three grandchildren, and we became foster parents about 4 years ago and took on 2 little boys. They are now 5 and 6. We think the adoption will go through his year. It is very hard to explain to my husband that I can’t go and do all the activities he wants to do with the boys. The last time I went to the Zoo with them, I was in bed for a couple days after. Now, I just stay home while he takes them. He thinks I don’t want to be with them. Just keeping up with the laundry is more than I can handle. I had a talk with him last week and told him that I would have to have more help from him. Moving a load of jeans or towels to the dryer hurts too much. I had him read a couple of posts on this blog. I thought it would help him understand and I think it did for a little while. Then, the jeans stayed in the washer until I moved them to the dryer. Anne, I understand what you are going through. I’m planning to keep having him read these posts until it sinks in and stays there.
Yes, this disease sucks! I want to be able to do stuff with the boys and my grandchildren. I want the EJECT button!
Hi Becky,
I so hear you about the laundry! Feels like my hands are separating from my arms and my fingers are coming off. Sometimes, I just can’t.
Just a quick note of thanks to all who commented on my post, it felt so good to be validated. Thank you from the bottom of my heart to all who wrote back, you made my day! You Warriors ROCK 😉 Anne
Amen to this post. I have been having a flare and the other night I couldn’t sleep for all the screwed up thoughts going through my head…I had to find a way to get them out so I could quit having my mind run in circles. The link to the Facebook note I wrote is attached…before this, I had not openly told the world and it did the trick and helped me get to sleep. My heart goes out to everyone, especially you Kelly…this site has helped me so much.
http://www.facebook.com/notes.php?id=1174628869
Thank you, Robin. I could not open your link. If you want others to see it you many have to change the privacy setting on it so that it says “everyone.” Or just friend everyone… 😎
This is the first time Ive felt ANY sort of connection with anyone for many many months…thank you !!! ~Beth
Beth, I felt the same way when I read these comments. 😎
Kelly,
An “Eject Button”. Interesting concept. As someone who apparently has had RA a lot longer than the 3 years I have been diagnosed. I have become my own worst enemy in some ways. With 4 kids, there is always something going on. I also still work a full time job. I try so hard to make sure that everything gets done. It doesn’t matter how much I hurt later or how exhausted I may be. I’ve already had 2 biologic therapies fail. On Thursday I go back to discuss “the next step”. At this point I don’t know what I want that to be. I would love to have a little relief from pain and fatigue. I really would like to make it through 1 day without haveing to figure out another way to do something, or fight through physically. What medication is that that can make that happen or does it exist?
I think after trying just about everything including retiring on disability and requesting a more mature attitude and family participation from my 14 year old, you have to make choices. Do you want pain relief or more energy (relief from fatigue)? I currently have to take narcotics for my RA pain, peripheral neuropathy and multiple unhealed metatarsal fractures (7). This was not an easy decision because it means I cannot drive until it is completely out of my system…about 48 hours, otherwise you risk a DUI.