“Fine Thanks, and You?” and 5 More Stupid Things I Say
1) “Do you want your rubber duck?”
The favorite rubber duck has a squeaker which lets water in. Squeezing the water out of that duck brings severe hand pain. Not quite as much as the softer Thomas squeaker toys. (And water also hides in the duck so it has to be squeezed for two days.)
2) “I can do it myself.”
The worst RA example is not a jar. For me, it’s window blinds. I have those faux wood blinds that are heavy and hard to stack. Every single time I wrap that cord around my hand and pull, I tell myself not to ever do that again.
3) “I can be there at 9 a.m.”
Not if I don’t get up by 5 a.m., I can’t. Why do I think I can wash my hair and get dressed in only two hours? Even though I’ve lost about a third of my hair since March, it takes longer every time.
4) “Fine thanks, and you?”
Occasionally, I get a letter or comment saying “I feel bad for others who suffer more than I do with RA. I can still do so much.” I think: I know; me too.
Meanwhile someone else says, “Why is your website full of people who can still run and ride a bike? I feel like I’m the only one like me.” I know; me too.
Whether it’s because of sub-types of the Rheumatoid itself or our genetic differences, our experiences with the disease differ greatly, even in the same patient over time.
If we can be honest, this is how RA is. And we can and should fight our hardest to overcome, but still… it is what it is.
It’s extremely frustrating to hear others talk about what they can do, assuming we can do it too, whether they have RA or not.
It’s hard to explain all this, and I suspect most of us don’t try to.
One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance.
So, instead of saying what it is, I say “I’m fine thanks” and save a lot of trouble.
5) “Why does it hurt so much?”
When I stay on ibuprofen and Lortab long enough to make a difference in the pain, it never fails: I start think I’m not very sick. Any more. Until I miss a dose. Then I’m mad.
6) “Is this considered swollen?”
When I was off of the methotrexate for a while, I had more swelling. Now, I sometimes forget what my joints looked like before RA. Until I try to put on shoes or a watch. A ring would not even enter my mind.
Personal note: To make a long story short, my spine is a pain. I’ll try to clearly explain what I mean by that soon. If I seem to be absent, it’s because lately I’ve spent lots of time unable to sit or type. Staring at the ceiling is a special challenge, but today I need to push myself extra hard. Please send prayers and support as I drive away by 5 a.m. to take Roo for his hernia surgery. It should be a routine procedure and we’re praying it’s simple and easy.
Edit 12/29/11: Roo’s surgery was in August when this post was first published. It went very well and he’s doing great! Since I got new coupons this week, I updated the coupon below to the current offer.
NOTE: The NEW RA WARRIOR STORE IS HERE – Click here!!
One final thing: I received a coupon this week to share with you. You can use it on anything from the RA Warrior t-shirt store here.
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Dates: December 27 to December 31.
Recommended reading
- Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
- A Rheum Full of Contradictions
- Rheumatoid Arthritis Disease May Be the Scarlet RA
“One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance. So, instead of saying what it is, I say “I’m fine thanks” and save a lot of trouble.” — Am guilty of saying this line a lot of times :P…it’s sometimes tiring trying to explain yourself to other people & expect them to understand/grasp what you’re feeling.
Also, when i’m in pain and ask the question “why does it hurt so much?” my sister would always tell me “what’s new?”…then it hits me but then again, pain is pain & it hurts… 🙁
I do hope that you’ll feel better soon, Kelly. I’ll be praying for you & your son, Roo. God bless… 🙂
Kelly,
Please rest assured that you and Roo are both in my thoughts and prayers. I pray that Roo’s routine will be simple and easy and that his recovery will be quick. I also pray that you will experience some respite from your unrelenting pain so that you will be able to do all that you need to do for Roo at this particular time.
It’s uncanny how you’re able to articulate so many of the things I go through and/or so much of the “conversations” I have in my head from time to time. Thank you for all you have done to help me and others cope with the challenges of this disease.
Praying for you and Roo today! Hope the surgery goes smoothly and hoping you are able to get relief from your pain in your spine (and everywhere else that hurts).
I get it. I’m a horsetrainer who has finally admitted something is WRONG! I’m still doing everything and I tell everyone “I’m fine” because they don’t want to hear different. Amazing how the pain can be in both shoulders one day and my jaw aches the next like a son-of-a-bitch. This is new to me and I don’t want to accept it. I hope Roo is okay.
Praying for you and your son.
Prayers out for Roo and you! Hopefully it is over by now and Roo is in recovery. Prayers that you are able to comfort Roo and not over do it so that you pay for days.
I have learned to say I’m okay today. Works for me. I thought about it and I came up with that so as not to undermine the fact that I rarely feel good. I don’t want sympathy, just understanding.
I was visiting with a few family members the other evening. I started to tell my sister about my first visit with my new Rheum dr, she stood up and walked off. This is the one who told me I should be positive, I might be one of the 6% that reach remission. I thought at the time she must be joking. Well there you go, guess she wasn’t and guess she doesn’t want to hear about it. I waited a few minutes and excused myself to go home. I seem to spend a lot of time there. At least I can share my feelings with you guys on here.
Hi Becky, I just wrote about Roo to Kathryn above. He’s doing really well tonight & I’m relieved! Tonight we will sleep and we need it!
Your sister makes me mad because I know just how it is – I have some family members who do that to me too. They actually walk away or talk over me to change the topic. My kids have noticed how disrespectful it is. So.. seeing I’m not the only one, I wonder what’s going on? Maybe it’s denial. Whatever it is, it will improve things when we have PSA’s on TV & magazines that tell the truth about RA & make it harder to ignore.
Kelly, I am so glad to hear things are going well for Roo and you. It is tough enough to deal with this crud day in and out but when we struggle to take care of our kids, that is the pits!
I’m not sure why a family member would act like that but it makes my decision easier. I am learning to walk away from people like that, family or not. I have to reserve my energy to get through school and to do the little bit of housework that I can do. I don’t want to waste it dealing with hurt feelings.
Someone mentioned hitting the nail on the head, reminded me of recently trying to fix a board on a fence that had come down because of my horse. I helped build the fence a few years back. I simply could not believe it when I could not pound a nail in, even using both hands. I finally got a roofing nail and got it to hold until it could be fixed right. Unbelievable, how fast this disease changes us.
Kelly and Becky, your not alone, my sister is like that, she says take a magic pill but doesn’t want to hear anything. So sadly we don’t have much of an relationship. Kelly get some much needed rest and pray you find relief for your spine.
Becky, I’m sorry about your sister, how awful.
Vickie, it stinks doesn’t it? And the sad part is normally she is a kind, loving person. So does that mean it’s me?? I’m just being too sensitive? I do know that it is possible, being so emotional now that I might read things wrong. So I use my daughter as a gauge, check with her first to make sure. I don’t even trust my own emotions any more.
Ronda, thank you. Guess I can claim all of you on here as sisters and brothers united in the cause of knowing what the others are going through. Couldn’t pick a better group if I tried.
I identify with many of these but the one that hits home is “Is this swollen?” – it’s funny how you can’t tell until you have something or a photo to compare with…..
“One of the harshest things, next to RA pain, is the assumption that we are somehow weak, lazy, exaggerating, or have a low pain tolerance.
So, instead of saying what it is, I say “I’m fine thanks” and save a lot of trouble.”
I just want to say you hit the nail on the head with this one!! (not that many of us COULD hit the real nail lol). I find myself saying this ALL the time – it does save a lot of trouble – people just don’t GET IT!! (Don’t we say that all the time??)
We are NOT lazy!!! Despite the fact that I work full time (with a lot of praying, swearing and OWs in getting there), I collapse on Friday nights and am basically near incapacitated during the weekend! I save all my spoons for M-F so that I can work – I NEED to work (mentally)…doctors tell me all the time to file for SSDI – like many of us, I just cannot do it right now. I LOVE my job – I have wanted this type of job all my nursing life – I worked hard to get my degree – I NEED to work…(It’s so hard to explain that to people….)
I hope Roo’s surgery goes well – I’m sending you spoons and virtual hugs Miss Kelly!!! <3
The worst thing for me day in and day out continues putting on socks and shoes. It doesn’t last too long bit it hurts my knees, ankles, hips, sometimes my shoulders and of course my feet. It’s frustrating to me that something so simple can inflict so much pain. I would love to be able to run or ride my mountain bike again, I’m happy for the ones that can still do it. I was off MTX for some surgery a couple of months ago and I had less fatigue, more energy and more swelling. There is nothing routine about surgery, you and Roo are in our prayers.
I tell people I’m “F.I.N.E” which really means I’m F-ouled up, I-nsecure, N-ormal–hurting as usual, and E-motional and remind them FINE is all capital letters.
I hope Roo’s surgery goes well and I’m sending good thoughts your direction. Please let us know how it went. (I have two hernias and I’m really curious!)
I love-love-love your explanation of F.I.N.E.
Thanks, I’ll let y’all know. I’ve just gotten online tonight Kathryn since we just put Roo into bed. He’s doing really well tonight and hopefully the hernia won’t be an issue again. Doc said there was a pretty big hole but he was able to stitch it all up with internal stitches. They do these on kids routinely at that hospital, so I was confident with the plan.
Ditto on what everyone says here with you Kelly on fine thanks… Prayers for you and Roo.
I went to see a ortho about my back. I got a script for PT luckily, but what he said was appalling…you just need a real hard workout not a day at the spa…assuming I am a lazy malingering princess, if he only knew. Well, at 50, I am not one to take this anymore and told him exactly what I thought and how he needed to do more studying. (he was a new young doc.)
You can’t imagine how much I wish I heard that exchange! Thank you for inspiring me to do better next time I encounter that – several times, I’ve left quietly and cried.
The back surgeon I saw last year told me “You dont look like you have RA to me” and sweepingly dismissed all of my symptoms, despite an abnormal mri. The rheumatologist gave a rare “reaction” to that encounter – at least I knew it wasn’t “just me” because the rheum doc thought that interchange had been “ridiculous.”
After doing reading here and there, concerning RA, OA and scoliosis pain, I have come to the conclusion that a back surgeon is not the place to go. Our GP’s or whoever mistakenly refer us to them, and this is what we get. Many people have this same experience. I won’t tolerate a doc or any person that is needlessly rude to a person in pain looking for help. There is confidence in knowledge,and we shouldn’t be afraid to share it.
Ronda, as someone else with RA, OA and scoliosis I’m wondering who i should see? I’ve already lost an inch and half in height. Back pain, and some leg issues that I wonder might be related to the back. I was debating ortho specializing in adult idiopathic scoliosis or starting with a neuro guy first. Well first first will be a dexa scan b/c of long term prednisone. New rheumy says I might have spinal fractures but oh, nothing can be done about them. Wants to do wait and see on leg problems b/c those probably prednisone myopathy which should get better with time (not so far). So I’m trying to figure out what way to approach or what to approach first. Funny that some of the increased dmards have been helping some of the spine/OA pain but not all/not new back stuff….
Sorry you are having the same problems. The back is a major pain! I hear going to a scoliosis specialist or pain management specialist is more worth your time than a back surgeon, not sure about the Neuro. We don’t have a scoliosis specialist in my small town. It’s great that you do. It’s sounds like you are on the right track to work through it all. good luck!
yep, the back pain is no fun. Much of the problem is when i sit for any length of time, but sometimes if even for 5 minutes. Then there’s a couple of new spots of mild pain on the spine itself that I generally only feel when leaning forward from sitting, higher up from my usual spots. Anyway….my last three height measurements have all been different (go figure) so don’t know how much height lost. Back problems on hold for while while we get other things out of the way first. I don’t know if there’s an adult scolio ortho surg here or not, but pretty big city, so probably. Think I’d start with xrays to check for progression of curvature before looking for a referral. Problem is, they NEVER look up past xrays that are over a year or two old for comparison! Afraid if I give them my disc i’d never get it back.
My thoughts and prayers go out to you and Roo, and to you, too, Becky Smith. I can’t imagine the hurt when a sister shuts you out that way.
Thanks again for all you do, Kelly. This week, I went to my first orchestra practice as the new music librarian rather than as a violinist, having to give up playing with the orchestra. I haven’t been on my mountain bike in almost a year. My rheumy told me last week that I had to give up the idea of ever jogging again, that I was going to do damage to inflamed joints if I tried. My appearance has changed so much that two people have made me write down the magic cures that cured their friends of RA. And yet, this week, I am battling that feeling that I’m a malingerer. I don’t have to have someone else accuse me: I accuse myself.
Linda, I doubt myself too if I even have a minute with less pain, I say, “It must not have been so bad.” And then it attacks in another joint, etc. You remind me of when I wrote about how I have felt like I’m not a real RA patient.
Linda,
When you said “I am battling that feeling that I’m a malingerer. I don’t have to have someone else accuse me: I accuse myself.” it so struck home with me. When I have good days I wonder why the heck I’m not out there working or exercising or doing something…and do feel like I am malingering. (Mind you the pills I take in the morning in the afternoon and the evening do remind me that there is a reason I am taking them). If someone asks me how I am doing when my family is around I can just see them holding their breath waiting to see what I am going to say. And really, why should that be? I AM NOT DOING ANYTHING WRONG! I have a nasty disease that I am trying to deal with! I too am grateful to be able to come here and realize that I am not in this boat alone. Kelly ~ thoughts and prayers are always with you.
I feel bad that there is such misunderstanding, expecially from health care workers. I am a physical therapist (my area, is working with children with developmental disorders, cereberal palsy, etc.). I am thinking of seeing a PT myself to bounce some ideas around about how much I can push myself, and also to review taping techniques (haven’t done it in a while, and I’d like to tape my knees for stabiity, during exercise). I have to say, when I was in PT school I remember learning about chronic pain patients, and secondary gains. I feel so bad about how that may have jaded my outlook as a new grad. Trust me, i get all the same comments you guys do, although I’m new at this, lol. I’m sure there are wonderful PT’s that have a lot of experience in this area. Maybe, this is my mission (to bring understanding to other healthcare professionals).
You know Deb, I’ve learned most of what I know by listening to patients. Your comment used a phrase I don’t think I’ve heard before, so I looked it up. It’s going to take me a while to think about this one. RA has been called by researchers the worlds’ most crippling disease. It’s known for being painful, incurable, and life shortening. It had never entered my mind that someone could think that by taking nauseating methotrexate & losing my many abilities, social life, and a lovely comfortable home, I could “gain” anything. So, of course, it never occured to me that health care professionals are actually taught that could be possible.
True, there are a couple of posts here ( such as here and here) about pain tolerance that I wrote as I encountered so-called research that tries to prove RA pain is subjective or apparently not so bad. But, I guess I’m still a bit too naive.
Thanks for opening my eyes, even if it was by using a phrase inadvertently. The reactions that many patients encounter to RA and some comments described here could be explained by this concept. If this is what people believe they see “from the outside,” then we need to figure out how to help them know something different – something more accurate.
Wow, jaw is dropped, I am dumbfounded with “in PT school I remember learning about chronic pain patients, and secondary gains”
I didn’t know this existed, or let alone taught. So not only do we get a world of pain and limitations, but we get prejudice and suspicion too? I’m gonna cry.
honestly Ronda, I prolly told you this before (or confessed it in a post somewhere) the first time I heard from a trusted person about the pain tolerance baloney and the research about how our pain is somehow caused by our stress instead of the violent processes in our musculoskelatal system, I lay down and cried.
I feel like this revelation is the other shoe dropping. How many times have you heard me ask *why* so many medical professionals seem to be so insensitive? This is a clue. What are my relatives and Becky’s sister thinking? Maybe this is part of it.
There was also an article recently by the new head of the ACR about how he distinguishes between pain and chronic pain. I did not identify with his terms at all. Hopefully, we can unravel this and make the truth known.
I do remember reading here what you wrote about the myth of our low pain tolerance and was flabbergasted by that. I don’t remember ever reading that health care professionals are taught in school to be suspicious of chronic pain, how archaic is that!
You are right, this is a clue to the inexcusable type of care we both experienced with the back surgeons, just to name a few. I ran across an interesting website today when looking into the chronic pain stigma. http://www.chronicpain.org/
Hi Kelly, I just wanted to respond, because I’ve been thinking about this since you made this post. I’m hoping that I didn’t offend you or my fellow warriors with this topic. I certainly don’t think anyone I have met through this site is seeking to gain anything (it’s laughable to think that). This was a term I heard back in school 15 years ago (so it is archaeic as Ronda said). I would like to say that I have been in physical therapy as a patient a few times (back/hip pain, hand therapy for carpal tunnel, breast rehab, and post ACL surgery). I had good experiences with all of these professionals (very commpasionate, and knowledgeable). I also did some research before going to these professionals to find out who was known in the area for that particular therapy. I have also had great experiences with most of my docs (I have several). My rheumy, well we are still getting to know each other (lol), I think it’s a learning curve.
Just wanted to clear that up.
Hi Debby, It doesn’t seem like anyone is offended by you. I’m not. But you can also tell it’s a sore spot with patients that there are actually those who are prejudiced that we are malingering, at least to some degree. With a disease as violent as RA, it’s staggering to us, yet it’s so.
I think it’s something we want to unravel and correct in the system. If we can figure out why many rheum patients receive inadequate care or have professionals doubt them instead of treat them, THEN we can try to improve the system. That “secondary gains” is a topic taught in schools is another piece to the puzzle. This discussion reminds me of one from last year here – click here.
As I’ve said, I truly hope your RA is halted by treatment and you do well, of course! But I also hope we can work together to find ways to teach medical professionals the truth about RA – the ones that need to know. Like you, I’ve seen good ones too in other fields so I know what it’s like – I just want all rheum patients to have the best care possible.
Not offended at all, I feel the same as Kelly. There are many great PT’s out there. How does one go about researching one that fits best as you did? I’ve had my script in hand since July, but afraid to make an appt, because I don’t know which one to go to.
Hi Ronda, many PT’s specialize. For example, if you are looking for a hand therapist, or a lymphadema specialist, youb can google them to see who is certified in your area. Also, ask your rheumy, or orthopedic MD who they suggest (I went to the same PT for my back and neck that my orthopedist uses). Also, because I am in the field, I can tap into my colleagues. For a good orthopedic therapist, you can also look for someone who specializes in manual therapy. I would also want to find out if they see a lot of patients with rhematoid arthritis (If it is a sports therapy clinic for example, they may be used to athletes, and not as in tune to the special needs of Ra clients). If you can find a therapist who works with a pain managment doctor, that might be a good fit. Some times it’s just that, finding a good fit. Good luck!
I just want to add something about the low pain tolerance thing. I had someone say to me, after my carpal tunnel surgery, and before I knew I had RA, “oh, i have carpal tunnel syndrome too, i couldn’t imaging having surgery, I must have a very high pain tolerance!”. Now, i had this surgery 2 months after bilateral mastectomy. So I said, “well I don’t know, after my breast surgery, I got out of bed, pulled the industrial strength cord from my IV pole out of the wall, walked myself to the bathroom, came back and rearranged my over night bag (I’m a little type A), etc. I think my pain tolerance is pretty good! LOL
Actually I think we probably have a high tolerance for pain. But I don’t care who you are, when it stays at a constant level over a period of time, any one would say UNCLE!!! I just want to scream at that little demon that is using pliers on my toes to twist them to stop it. Yet you look at them and they look normal as ever. I don’t want to be deformed, I really don’t. But at least then no one can think you are faking it.
I did the same as you. After a spinal fusion, I had them stop the morphine. Made me crazy! I wasn’t using the pump much anyway. I ended up causing too much drainage by walking too much, just wanted to go home sooner. Ended up staying two extra days. I’m a little Type A too, afraid that might set us up for RA.
Good luck and prayers for all of you. I just wanted to add that “I’m fine (not F.I.N.E.), thanks is not good enough when the swelling and pain are so bad that you can’t tell the difference between “normal” pain and traumatic injury. My daughter, who is lucky enough to be able to be involved in sports, didn’t realize that she had sprained her ankle because it wasn’t as swollen or painful as some of her other joints. How do you explain THAT one to her coach (or grandmother)??
Sally i know what you mean I walked around on a broken foot for a week because i thought ” just another flare up!”
As for the secondary gains I would love to get rid of the attention and i rarely get sympathy, and as for financial gains – I don’t see how going from earning $75k to earning $35K is a gain but then maybe my math is off 🙂
I hate to say I have no gains at all since I’ve gained insight and patience. But that was also becuase I forced myself to do that so I might have done that anyway since I’ve always been a making-lemonade type. I think I could write about the primary & secondary losses for about 10 pages so I will do as I said and just let this sink in for a while.
Kelly, great post. I’m glad to hear surgery went well, and I appreciate your dedication to our cause, even as you fight other battles. I’m particularly prone to using the “I’m fine” line, even with family who worry about my condition. I do this in large part because it’s easier than trying to repeatedly explain that endless pain that accompanies me everywhere I go. So my family has learned that fine means “normal” levels of pain — i.e., within my threshold to bear and still perform much of my regular activities.
But then I have days like yesterday/day before. Worst flare-up I’ve had since diagnosis — basically left unable to sleep overnight, not even able to lay down. Hands/wrists/elbows were swollen and felt like they were caught in an endless churning of a wood-chipper, while my knees and lower back felt like they were being pounded not-stop with baseball bats. After about 30 hours of this I was able to finally get 30-45 minutes of sleep, then a few hours later, I crawled outside and discovered the one place I could actually sit without adding to the pain was a “hammock chair.” I crawled in and eventually fell asleep in the sunshine for about 4 hours yesterday afternoon.
Today, I’m not able to tell my family I’m “fine” but I’m at least able to talk without groaning in the middling of sentences. Which is good, because I was able to tell off a co-worker after he suggested I should have just alternated ice packs and heating pads on my hands (“It always works for me when my hands are sore from rock climbing!”) yesterday rather than taking a sick-day from work.
I’m won’t even go into the “low-pain threshold” issue — you know where I stand on that. Having lost a finger to a chain-drive unit on a powered lawnmower, pulverized my heel bones in a paraglider crash, broken my leg, cracked ribs, broke my tailbone, and endured more than 25 injuries requiring stitches over the years of my outdoor adventures, I am very familiar with pain, even before my RA diagnosis. I’d gladly suffer all those injuries again rather than deal with the regular, ongoing pain associated with RA — not to mention the excruciating flare-ups.
Well said Dan..
Pleased Roo is doing well.
That secondary gain theory is so wrong.. As I said to my rheumy when he rang me today.. Why would I want to take all these meds if I didn’t have too? If I wanted attention and to get out of the house work why not just say I’m not doing it? Why should I clean up your mess?
After my appointment yesterday I was in pieces.. I was going to have to wait till November before I could have another bite at the cherry my rheumy holds.. I don’t normally cry about my RA.. I’m not that kind of person, but yesterday it really got to me. I suddenly thought.. Non of you care..I went into town on my own and just sat with a coffee and cried..
I hate going to see the rheumy as I find it hard to deal with the fact I can’t do. I also find it so hard to tell them how I feel.
Yes I’ve had a busy few weeks, but when I was taking Humira that didn’t really matter.. I could deal with it without my body going into melt down. When they say how are you doing I say fine.. It’s so engrained into me now it just comes out.. Things have to be very, very bad before I’d admit it. One of my friends now comes and looks at my hands when I say I’m fine… Just to reassure himself that I am talking the truth!
The reason we all say we’re fine is that we don’t want to admit to ourselves or others that we can’t do…
I am the first one to say that I just push through the pain as much as I can. If I want to do then I will try my hardest to do it, but it’s always at a price…
Over the last few weeks I have had 3 birthday parties to prepare for, do the cooking and organising of the cakes and prepare 2 BBQ feasts.. It takes me 3 days to do it all and a week to recover! But I did it because I didn’t want to see the disappointment and those looks from people who should know better.
Healthcare professionals, even ones you are married to can be very scathing at times. It hurts me to the core when it happens, so I say I’m fine and I can do it, just so I don’t get hurt! Other times they can be so great though!
Sorry it’s been a bit of a post…
Roller-coaster ride these last few days..
Today to prove I could do it.. I changed the beds, baked a homemade pie for dinner and got all the washing done… MISTAKE..
But I’ll still say I’m fine if anyone asks!
Kelly my prayers went out to you and Roo. I am so glad to hear that it went well yesterday.
It is hard to say I’m fine when you are not. But you just say it so people don’t ask a million questions. Or again the just blow you off. I have told people that I have RA and I have notice like family…they don’t ask how I am. But I work at a chiropractic office and everyone asks how are you today. So I give the easiest verbal response.
I think I will try the FINE…by Katherine!
This doesn’t have anything to do with the column. I just need a place to say things because no one else understands. My son is 19 tomorrow and tomorrow he leaves for college. In the past 2 months he’s been in the ER three times and the doctor’s office once to have fluid removed from his knee. 122 ccs the last visit. He’s also spent 5 days in the hospital for staph and had to have another run of antibiotics when the infection returned two weeks later. He “forgets” to use the Enbrel. He refuses the Leflunomide. He refuses pain meds. He knows the consequences, but I think he just tries to pretend he isn’t sick. He’s been sick at least since 10, diagnosed at 12, but I think he’s been since toddler-hood. He won’t ask for assistance or special considerations. I think I’m just scared. Who else will look at him and recognize anything is wrong? I’ve never treated him with kid gloves. We’ve never told him he can’t do anything; he’s always made those decisions based on how he felt. He’s more mature than most 19 yr.olds simply because he’s had an adult disease all his life. I’m just scared to let him go.
Dear Jane Ellen, I went through this 3 yrs ago & I cried for many nights. My daughter went 12 hrs away to college and she’s been deaf since she was 4. She was homeschooled & never had traveled alone, etc. I was worried since she didn’t want to have others notice she is different and might need considerations such as sitting in the front of a classroom.
We can’t stop them from making mistakes but I bet your training that he’s responsible for himself will win out in the end. He has to be the one to take ownership & be responsible for his care. Of course he wants to believe he’s not sick – that’s understandable. I’ll pray for him to be safe & catch on that he needs to take care of himself sooner than later. My daughter has done beautifully – of course.
Thank you, Kelly.
Don’t we all get tired of saying “Fine thanks and you?”. It does get old, but the bottom line is no one really wants to hear the truth, and most don’t give a damn either way. My stupid thing I say (to myself) is “What’s wrong with me?” My eyes are fuzzed out–what’s wrong with me? I can’t catch a breath–what’s wrong with me? Something (knees, elbows, hands, ankles, feet, etc., etc., etc.,) hurts bad–what’s wrong with me? It seems that everyday there is something that makes me ask that question and I give myself a whack on the noggin and say–oh yeah, I have RA.
Kelly, praying the all is now well with little Roo and you. I find myself often using I am fine a lot as well. Mostly because I have learned over years I been living with RA that the majority of people don’t really want to know how I am anyways. It hurts though at times because I know I am not being honest, even with those who I know genuinely care about me. It’s just somehow gotten to be a habit because I can not bare the pain of people’s reactions. What really gets to me though is when people categorize me as being lazy. I have always been a hard and diligent worker and I would truly love to go back to doing all the things this disease no longer allows me to do. As far as the pain goes I can no longer remember what a normal day with no pain is like. Everyday I have pain or swelling to some degree. Life as I knew pre-RA is gone and It is never coming back.
I catch myself saying “it could be worse”! To people who know I have RA when they ask how I’m feeling….. When really its the worst right now’.i guess its a habit so I dont feel like a whiney butt when I want tosay “i feel like poop (putting it nicely)*smile * hows your day going?”
Thank you so much. I have felt so lonely these past few days.
God bless you.
Instead of saying I’m fine especially at work, I say either “I’m getting there” or “Ehh, like my Dad says, this too shall pass. It may feel like a kidney stone in the process but it shall pass”. At that point, whoever I’m speaking with or passing gets the message that I’m not at my “normal” 100% (which is like 25% for everyone else). I eventually got them “trained” (Took me almost 10 years lol)to look at how fast I was moving and they would respond with “Where you heading” if I was moving slow or “You’re leaving tracks today” if I was moving “quickly”. Kind of a bummer that I’m going to have to retrain a new set of work acquaintences lol!
I’m still trying to get the folks at work to understand the invisible parts of the disease. I do find I am sort of discriminated against and looked over because I can’t move as fast as most of the others.
This touched me when I saw it. I had no idea Chelsea. Like most of us – you are such a fighter. I had no idea you went thru anything like that. We all just press through so much, don’t we?
I am not alone, as other older and less physically able co-workers are also discriminated against and also overlooked for the other non-physical and “intellectual” contributions we could make. In this economy, we tell ourselves we are just lucky to have A job, ANY job. I tell myself I am lucky to still be able to do it, albeit in an altered and slower fashion. I and the others do ask for help where we need it, and do usually get it, although often times with an attitude of resentment from the young and more able ones.
This is my first time to respond and am not sure this is the right way but here goes.
And Thank you Kelly for creating this site and to Change Magazine for the article they did so I could find you, you have given me so much information over the past month and now I know there are others dealing with some of the same things I deal with.
1. The Dreaded Rubber Ducks (at least 20 of the quackers) for my 30 month old granddaughter were raising. my husband has finally found a solution!
Slicing their tummies.
2.I Can Do It Myself! Filing my fingernails, nope I now just cut them off or have my husband cut them off.
3. I can be there at 9:00 am if I start at 4:00am and the baby doesn’t fight me on dressing and if I can buckle her in the car seat without calling a neighbor.
4.I’m Good! Who cares.
I have got so tired of hearing myself say I’m tired, I hurt or just don’t feel good so I say I’m good, then my husband says “Liar” I just quit saying it as it seems not to matter.
5. Why Does It hurt So Much?
I ended up in the ER with bleeding stomach ulcers after Rheumatologist # 2 told me it was ok to take the BC Powders (even though I told her I was taking 6-10 a day) she assured me for a year as soon as the Methatrexate got to the right dose I would take less. She understood why I hurt so bad since the MRI’s of my hands showed so many holes in my bones. Never once would she prescribe a pain medication.
I ended up in the ER again with stomach ulcers as Rheumatologist#3 insisted I take Aleve the past year.
I will take your tips now on finding #4.
6.“Is this considered swollen?”
My knees don’t look swollen but it is becoming more difficult each day to squat to eye level of my toddler to communicate and picking her up is out of the question with both rotator cuffs torn, the right repaired but re-torn.
After a year of complaining of severe pain again in the right shoulder to my Orthopedic Surgeon, only when he had the new MRI and scheduled the surgery did he ask if I needed something for pain. My reply was automatic “No I’m Fine”
7. With the rotator cuff tears and RA in my back I’m thinking a Wi-Fi connected TV mounted above my bed!
I love number 5 i do that all the time lol
Ok, *what* is with the hair thing? I feel like a small animal has died everytime I look at the shower drain!
oh no, is it side effects of your meds? Have you had your thyroid checked yet? Low OR high can cause that.
Nope, none of the above. I had figured it just ran in families like male baldness because my gramma had the same problem, but since it was mentioned above, I thought I’d ask if it was related to RA.
I’m glad to see I’m not the only eternal optimist! Everytime I feel well I think maybe I’m not as bad others until…then it hits me like a sledgehammer…crap! I AM that bad :/
Oh that made me smile! I was just writing in another project about that optimism. It’s enough to feel silly – but it’s also what makes me me & keeps me going. There is a funny discussion about in with my friend Dave in the comments on this post: https://www.rawarrior.com/by-the-way-i-have-ra/
i do that thing, too, when i feel a little better and it’s suddenly something different in my head: meds are working, let me make some plans! and then it doesn’t take long and plans are long forgotten, can’t even imagine getting in a car, much less a plane. i have a group of friends on each coast just waiting for me to say the word, and they’re ready for me to come. i hope they don’t give up on me.
my body/mind seems so bipolar. when i’m having a ‘normal’ pain day (only knees and shoulders, maybe a little bit in my back), i’m…well? no, i know somewhere in my head that i’m not well, but i’m well enough for that day that i forget just how nightmarish it all can be, and then when the nightmarish flares come, i’m somehow surprised and i can’t imagine feeling any better and sometimes just wish for it ALL to be over with. but how can i ever even forget? it’s not quite forgetting, i guess, but it’s something similar.
i want so badly to say ‘fine, thanks, and you?’ and mean it. i don’t even say it anymore. i’ve resorted to shrugging and saying ‘you know.’ or saying ‘im okay right now because my pain meds have kicked in’ or just simply ‘bad day.’ people are asking more and more about it, though, and it seems they want details, and of course that’s a conversation killer lol. i say im sick of talking about it, but here i am…talking about it.
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Oh, Kelly, #5 really resonated with me! I’m still a baby RA’er, haven’t even seen the rheum yet for my first visit, and I’ve caught myself saying to myself, “You can’t have RA, you aren’t hurting! What are you, a hypochondriac or something?”
Then I forget to take my Tramadol and Tylenol cocktail, or I remind myself of having to loosen the laces on my left shoe before I started on prednisone, or I don’t take my Percocet at night, or…
And then I remember that I’m seronegative RA, my anti-CCP was over 250, and it’s a done deal except for the parade and the confetti (the rheum visit).
I feel silly for suggesting this to you, I’m sure you have already heard of this, but on the .01% chance you haven’t and this may help you I’ll subject myself to being silly… Microsoft word has a speech to text program in it that I wasn’t even aware that I had already, a lot of us actually have it already. It works pretty good to! A friend of mine found out about it when she was in too much pain to be able to type a school paper. Well I hope I helped you! Have a great and low pain day!!
I know this thread is old, but still so very relevant. last year, I walked around for two months with lung pain thinking it was the RA, and I actually had a massive lung infection with 1/2 a collapsed right lung, that took another two months of antibiotics and two lung drains to get over. I didn’t have RA lung before….but I do now.
I was shocked when you said that about your spine! Mine’s been very severe since the first week of Sept. My RD doctor ran more tests & told me my 3 lowest disks are badly fractured. It’s caused me to shrink & have scoliosis in my lower back. He said my ribs rub against my hips on the right side when I walk. Next he said my RD markers were off the chart. (No duh!) He then informed me I now have osteoporosis, & some other weird auto immune disease (Sarcoidosis) on top of the RD, Sjogrens, raynaudes, GERD, & IBS. I don’t believe I have Sarcoidosis no matter what he says. Anyway I’m about to join the ranks of those who inject their methotrexate. Throughout all this, I’ve too have told people “I’m fine.” Thanks for letting me share. I needed to tell someone. These past few months have been really hard. Hope you start doing better soon.
I forgot to say, that for the 1st time I felt vindicated because all my doctors were horrified by my test results and said the results showed that I had to be in tremendous pain. (I felt like saying “no duh” but didn’t) I was just grateful they could finally see what I’ve been complaining about for the last 3 years.