RA Reality Versus “The Lie”
When everything looks normal but it’s all wrong
Countless times I’ve said that I would gladly be wrong about RA. I’d gladly be delusional instead of this sick. I often say “If only I actually were crazy. Then, I could take medication and at least believe I felt better.” Of course it’s a facetious remark, but it’s also a reference to this notion I have about what’s real and what’s not with RA. We live with this real RA that brings pain, fatigue and fever, damage and disability; but on the outside, things can look fine.
All around me, life goes on as normal. In the midst of seeming normalcy, I can’t walk properly or open a car door or whatever. It’s frustrating. Or I look down at the toes that I feel pulling and there’s no rubber bands on them. Or at the ankle that’s being stabbed. And there’s no blood. Nothing to see. When my shoulder won’t move an inch from my side for two weeks, an ER doc says it’s perfectly fine because he can’t see anything.
This is how it it’s been for five years all day, every day. Every joint. But, it’s all only my reality. No one lives it but me. Do you know what I mean?
One of the first difficult things when all this (unrelenting RA) started was the way people look at you when you claim you can’t do something. I couldn’t hold an iron or a soap bottle any more – and at times even a cup of coffee. Even if I asked them not to, people handed me heavy things and looked incredulous if I said I can’t hold that. It’s just hard for the mind to overcome what the eyes see.
In the privacy of my house, when I’m frustrated, I call the normal façade of RA “The Lie.” I say, “If only The Lie were true. If only I could find the door into that reality.” It seems like the whole world has the benefit of The Lie, except those who are stuck in RA-reality land.
Even I have been fooled by The Lie as I tried to find the door back into the normal world. With enough medication and rest, I get fooled into thinking that my shoulder or knees are doing better. RA is not that bad.
Go ahead and laugh at me if it makes you smile. Just the other day I was lying on the sofa thinking, “Oh, my knees are fine now” until I tried to walk to the bathroom.
RA pain won’t yield to the “The Lie”
I’m very tired of pain. I imagine that those around me are just as tired of hearing of it. I can’t say it out loud or write it out loud every time I’m typing. There are so many topics I want to write posts about that I have long lists of them! But am I the only one who feels frustrated by others assuming that the RA is only bad when I say so?
I know that we are not all in the same place. Many readers don’t even have RA themselves. I try to tell enough of what I deal with to help paint a true picture, but not more than people can handle. Hopefully, it’s sufficient that the world will at least begin to doubt the “The Lie.”
Postblog: Back in May, I was offline for a week because my computer caught a virus. This time it was my turn. Our house was full of fevers, sick stomachs, and the headache from hell. I passed some miserable days when I couldn’t get down any food or meds to mask the RA. I absolutely hate it when so many joints are screaming that you can’t do anything, even read. I doubt I’ll ever catch up on emails and or anything else, but I’ll do my best.
Recommended reading
- To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?
- If I Were Not Living with Rheumatoid Arthritis: 10 Things I’d Do
- 20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me
Glad you’re doing better.
I get tired of trying to explain it too and I haven’t even had RA for a full year yet. It’s the burden we bear.
You poor lady! It’s no lie, it is unfortunately our daily reality. But yours was compounded with the flu. Well that makes flu x 2 for you. All I can say is (((HUGS))) and do know that many were worried about you during your non posting days. I can only hope you find the road to your “normal” again.
Kelly,
So sorry that you had to deal with gastro and other ailments on top of your RA. Hard enough to have stomach virus, but having a problem that causes you to be unable to take your meds that keep you going is even more challenging.
Thank you for being brave enough to share your story, and to come back and share your life with other RA patients as well as people like myself who can learn more from you.
I really sympathize, Kelly! I have psoriatic arthritis, another inflammatory type. There are days when the fatigue or pain is so severe and constant, that the only thing going through my mind is “Gosh, I’m so tired.. man, am I really hurting,.. I’m REALLY hurting…” – over and over and over again. The pain and fatigue can be so overwhelming that it dominates everything. As hard as I try to distract myself away from it, it can just completely take over what I’m feeling or thinking.
I remember one time when my sister and I went out to eat. She “knew” that my fingers were hurting a lot, but when I was struggling so badly to simply cut my steak (and failed), she asked “Is the steak really that tough?” I had to tell her “No, my fingers are hurting so bad that I can’t handle the knife!” Without significant swelling or severe deformities, people just can’t believe that the pain can be so severe. It just doesn’t seem to really sink in.
I have a pretty good rheumatologist, but because I don’t have a lot of visible swelling or deformities, it doesn’t always seem that she really understands how hard it is for me to do things. The last time I saw her, I told her I had a couple of “good” days that month – I could mow the lawn for the first time in many months. But I had to mow for 15 minutes, lie down for an hour, mow for another 15 minutes, lie down, etc. But I managed to work for a whole 1 1/2 hours that day. Her mouth dropped open, and she said “but it took you the whole day to accomplish that!” I said, yes, and that was a good day for me.
I know you have been going through a particularly hard time recently. Here’s a gentle (((HUG))). Best wishes!
Hi Debra,
Really good example with the steak.
I eat meat (and other things) with fingers at home. But in a restaurant, I ask my daughter to cut the food if I can’t. Still embarrassing but I just ask out loud, Please cut this for me.
Neither of the rheum docs I’ve had – not even the 1 pretty good 1 nor the first one (not really smart but very compassionate) had any IDEA what I experience with RA. Never asked about fatigue or how much pain or what I can’t do, etc. Really felt like they did not have a clue.
By the way, your description of mowing the lawn is exactly like my description of painting a room! Which I could do for the first couple of years and hope to find the right meds so I can again one day.
Kelly – so sorry to hear about your bad (worse than normal) week! Hope your house is back to ‘healthy’. It can take a while, but I think once people get the right information (several times), they will come to know the truth about RA. They will know that you hurt, even when you don’t say it; even though they might not understand, they will learn there are things you can’t do, can’t pick up, can’t hold; and they will know that none of it is your fault and that the disease is there even when you can’t see it. But, that doesn’t mean they won’t forget from time to time 😉 I imagine it’s very difficult to truly understand without having been there; I think it would be for me. I wouldn’t have believed myself saying that I couldn’t hold a cup of coffee…except that I couldn’t hold a cup of coffee. It’s more than strictly pain; it’s pain, plus weakness/loss of strengh, and loss of mobility. Having just a taste of what bad RA can feel like, I really emphasize with those whose symptoms are unrelenting. I pray that God will give you the strength to keep on doing what you’re doing. The Lies need to be stopped; the Truth needs to be told.
Kelly, I’m sorry you all have been sick. I’ve been worried, and now I see rightfully so.
You words are always so deep, emotional and heartfelt, no matter what you are writing about. This post, has me right there with you. I haven’t progressed into the stage where you are, but the pains you speak of are definitely something I can empathize with you about.
I am always here for you.
K
sorry you were sick. iam glad things on are on the mend virus wise anyhow. I feel the new viruses and RA are much worse then they used to be pre ra. i got the flu s bad i should have been hospitalized this spring and because i couldnt move they coudlnt get me to the er. I hope its not a show of things to come for many years.
Dear Sweet Kelly
I’m very tired of the pain also. Not just the pain from my invisible RA but the pain of saying no to invitations so many times that the invitations no longer come my way. I stay home where I don’t have to hide my hurt from family and friends because I know it hurts them so much to see me miserable, knowing there is nothing they can do to help me find relief.
I have been dreading this week all year. I have now been out of work one full year and will no longer have insurance. A funny happened to me last week. My conception of this week took a 360 turn. I’m looking forward to spending what little energy I have on me, on time with family. Not going to the doctor five, sometimes six, times a month.
I am not asking for my life back. I am just yearning for a little itty bit of a life. Maybe it will help take some of my emotional hurt away. I’ve surrendered any hope for my joint pain to end.
I hear you Kelly.
hi Rachel, I’m so sorry this terrible RA helps us understand each other so well. I know what you mean about going to the dr that many times. It feels like a waste of time most of the time. Hope of a pain free moment is a thin thread.
Rachel – I’m with you. I’m so sorry we are all having this pain. And I, too, am tired of turning down invitations – that are now getting fewer and fewer and fewer as time goes on. My friends have given up on my being able to attend events, so they seldom even mention them to me anymore. Not whining about it, you understand, just acknowledging the reality of the situation.
I try not to be a burden on family and friends, but I’m less and less able to take care of myself, and in more and more pain. My flares get more frequent and last longer. And I’m tired of having my ever patient husband cut my meat up for me. I no longer have to ask. He just automatically does it in the kitchen when he serves the plates.
Isn’t it a drag?
Hope all of us can help find a cure – soon!
Dear Kelly!
I am so glad that you wrote this article. I am an RA patient, a student and a silent reader of your blog but today’s post insisted me to reply. You are so right and your words tell me that I am not the only one feeling like that!
Sometimes I fear that my exteremely supportive family would get tired of my complaining. But you know that we RA warriors are so patient. We wouldn’t complain if it wasn’t something very very excruciatingly painful. Now when such days come (which they do very frequently nowadays) I just tell my sister or mother that my joint is hurting but then at the next moment I say to them, ‘Hey what’s for lunch?’. I mean I don’t want to worry them. Not anymore. I adopt a ‘happy-go-lucky’ attitude in front of them.
I am also a patient of Granulomatosis with Polyangiitis, commonly known as Wegener’s Granulomatosis, which is a form of vasculitis. Due to this, my RA is often overshadowed.
I read your blog often to get inspiration in fighting RA. Its good to see that others like me are out there.
Keep up the good work :))
This is a long lonely journey but i’m thankful that I have you to remind me that I am not my illness..to keep on keeping on for the good days..and that no matter how bleak or discouraged I get there is someone who knows exactly where I am and comes to find me…
I think that’s what we’re all doing when we come to this site..thank you.
Amen, Michelle! Amen!
Kelly, my dear, have been praying for you and am glad you are back – at least a little.
I, too, live with The Lie. I think my husband gets more frustrated with me when I try to do things I shouldn’t or can’t. He knows I hurt and wants me to not hurt because he loves me.
We worry that he will have still another heart attack and not be able to work (from home at his computer) nor be able to take care of me. And I’m frustrated that I can’t take care of him – that’s what nurses do, isn’t it? Take care of their family?
Today I don’t want to talk about. Couldn’t even take a turn around our so-called “garden.”
But tomorrow must be better. We are out of some of our meds and I need to be able to drive tomorrow. So I’m going to bed even earlier than usual with a heating pad and a pain pill.
Sorry, I don’t usually unload here – I try to keep it to providing some medical info or just encouraging people.
On a lighter note, Dianne and I “Met-Up” and are starting a support group here in Lawrenceville! Yea! Next meeting we’ll get the waitress to take a pic of us to send to you!
Cheerio!
Elizabeth
RA reality Versus “The Lie”.
You hit the nail right on the head Kelly. Could not have said it better myself. You are the BOMB!!!! Hope you have better days ahead and soft ((((((HUGS))))) to you for your excellent articles.
Sorry to hear that you’ve been unwell, in more ways then just living with RA. Glad to see you back online, you’ve been missed.
Fantastic post, an experience I and I’m sure all RA sufferers can relate to. Your words are all to familiar, and unfortunately led to some dark patches mentally. There are times when I have hope that maybe I can live a normal life of a 22 year old only to wake up barely able to walk down the stairs. In that regard I’m very thankful for having a family who understand.
Glad to see you back Kelly, hope good health for the future.
Hi Kelly,
Thanks for making it back to a chair, back to a keyboard, and back to all of us. You give us hope and acknowledgment…I hope we give you a little, too. Know that you were in my prayers during your absence, and you will remain there always.
We know that The Lie isn’t true; sometimes, just knowing 1 person KNOWS is enough for me for that day. Tomorrow is another day…
Hope you’ve recovered from the virus. Baby steps…? 😉
Peace,
Jeanne
YES! you DO!
Kelly, wow, you said what I wish those around me truly understand, but I know they don’t. thank you for speaking the invisable truth so well.
Thanks Kelly. So fun to have another Kelly aboard. 🙂
Kelly – I missed you and your posts. Welcome back and sorry for the sickness at home. YUCK. I empathize with you and your unrelenting pain. I was there for a number of years and did ultimately find some relief, but this post and the comments do bring that low point back to me. I would order sandwiches so I didn’t have to cut. I couldn’t prepare dinner. I would look healthy and ask the clerk not to fill the bags too full. That would generate strange looks for sure. I recall crying when I got home because the bags were too heavy for me to handle.
I recall running into a friend at a store who said “I haven’t seen you around? Where have you been?” So I told her about the RA and laying low and she looked at me and said “well you look wonderful.”
Huh. I never ever got that. Kelly – I wish you lesser pain, I wish you relief. I wish it for you every day.
Hang in there.
Leigh
Leigh, thank you for making me feel understood, and for the “funny” story and thanks so much for telling that you have “found some relief.” For one, it gives hope to many readers who see your journey still hoping for either a remitting of the RA or a response to treatment. Second, hearing from our readers who are in many different places with the RA helps to create an accurate picture of what RA is like, one of main goals of the site.
Sorry everyone was so sick Kelly. What a week.
I have been telling myself The Lie lately. I’m trying to keep active and keep my kids out of the house since it’s summertime, but by the end of the day my body is reminding me that I am just kidding myself when I think that I’m really not doing that badly. In the end I wind up exhausted and hurting, cranky by the evening, etc. I can’t decide if it’s better to rest, or to give my kids as much of a summer as I can, while I can. God forbid RA leaves me with serious mobility issues during their childhoods, they are just getting to ages where they may form some lasting memories (my older will be 5 in Oct, and the baby was just 2 in June) and I don’t want them to be of me sitting on the couch while they watch movies and entertain themselves.
It’s a battle we face – getting that balance – of how much to do. Most of us do a constant trade off to fight for doing the things that they have to or think are most important.
My Roo turned six in June so this is what he’s known his whole life. Some days when we were sick last week, the hardest thing I did was pour advil for Roo when we were both moaning from fever aches. At times, I’ve used my forearms to drag him onto my lap and that’s all could do – look at a movie or read a story. Other times, I can do more. But I never was able to teach him tennis or put on his socks… OTHER mothers with RA encouraged me that it would be okay and from all I see they are right. I’ve had a lot of help from his sisters, but Roo is doing fine. Even when I can’t bathe him myself, I come into the room so “we” give him a bath. It’s hard – not how we would want it – but it’s still ok.
Hi Kelly,
Your feelings are shared by many of us out here. This disease is in our face 24/7. It is hard enough to deal with RA, let alone deal with the questioning looks and raised eyebrows of people who wonder why we don’t just ‘get on with our lives’; oh but it’s not that easy when something is yelling at you all day every day.
I often wish I didn’t know what I know about this illness, the relentless progressive nature of it. In the knowing we may sacrifice a simpler life with RA, yes ignorance can be bliss, but I do believe that knowledge can protect us more in the life long run of this disease.
New to RA diagnosis (two months now), I still easily get caught in the denial and lie that it’s NOT RA. Hard to face that this will still be tempting me five years down the line. You really help me with all you write about, especially today. I am also glad you are feeling better.
Been trying to live the lie today as a matter of fact. Sometimes I think that since I don’t look sick to me either then I must not be sick. I must be making it up in my head even though everything aches. How’s that for scarey…..
same as me – I thought I was the only one. And then I can’t move at all or something actually swells and I have to admit I didn’t dream it up – I really have RA.
Kelly, we’ve been concerned about you, and we hope that you’ll be feeling better very soon. Please take care of yourself…wish we could take care of you as well as you take care of the rest of us! It’s good to see you back and chatting with us, but it would be even better to hear that you’re feeling much more comfortable now!
Take care, and if good thoughts could cure you, you’d be 100% cured now!
My right hand is killing me Violet, but I’m excited to type a little too. LoVe you!
Kelly, so glad to see you back, knew something had to be going on. Sorry you had to go through the flu on top of your RA. I was just talking to my brother tonight about how scared I am about having another bad flare. I do seem to be doing a little better on Plaquenil, praying it continues. I am going to ask to go to injections with the MTX, very sick of feeling sick! But you really hit the nail on the head about the Lie. I feel like if I say something, people are tired of hearing about it. So I don’t. Then someone will say, “But you haven’t said anything about being in pain lately!” No way to win here. So frustrating on top of dealing with all of the pain and being so tired, no beyond that. I could sleep 20 hrs a day, if I could just stay asleep. Anyway, you know, Lord knows you know. Helps so much to come here and read that I am not the only one that couldn’t pick up a glass to drink, or brush my teeth or even pull the sheet up over me in bed. It is the RA, I’m not crazy. Thank you for that.
Megan and Kelly:
I am so glad that you posted this. I a, battling the same thing right now. My children are two and five as well. I am having a rough month and struggle between wanting to not move and not taking my kids to places. I am trying to find the balance between caring of my health and not letting the momy guilt eat me alive. I have been having a pity party this week lol. Seems so unfair that my kids have to deal with this and I am tired of not feeling well and people not understanding. At least I am not alone:)
Yael
I cannot relate to the invisibility of disease. I certainly have some things that are invisible, but people “see” my disease which is still undiagnosed and feel my doctors are crazy to not help me (quite the opposite of many of you isn’t it?) I get labeled with arthritis and a question mark. People see my crutches or walker, my taped knee, my splints and some have taken the time to notice my deformed thumbs which is essentially osteoarthritis at the age of 31. They notice when my hands shake because I drop things, just can’t hold on to stuff some days. They notice when I struggle to hold a fork or use two hands to lift a glass. They notice when I walk slow. I feel strange. I am a part of this arthritis autoimmune group yet alone. I appreciate articles such as this because they talk to so many people–they are essential. But it’s not my experience. When people with RA or lupus or (and the list goes on) talk about taking hikes or going for walks, I don’t relate; without tools I cannot walk for long. I need thumb replacements and no one knows why! So where are the people like me? I go into the RAW group on facebook now (last couple weeks) with the intention only of trying to be encouraging to others as I wait for my diagnosis, my medicine to stop the destruction on my thumbs or at least prevent loss of another joint. My plan tonight was to just like posts on facebook as a way to encourage or just post simple encouraging words. I don’t want to complain about my disease, whatever it is, but I still wonder: where are the other mes? The ones who worry they may end up in a wheel chair? The ones who started off with a big bang and what do they have?
Jenn,
It sounds like you feel lonely – the only one who is like you. I have felt that way many times. I don’t know if this will help.
I don’t know everyone who reads or responds here, but I do know many of them & many of the FB community. And I know that many of them do use various assisitive devices, like you. Some use wheelchairs and others hike. It can be hard to hear about either- when I know I can walk, I might feel guilty about others who cant. But HIKE? That just makes me jealous. But what can we do? All we can do is encourage one another and hope for better days for us all. I believe that is how others will probably treat you too.
The disease is waxing and waning in some. And full force unrelenting in others. Some have only a few joints affected. Others have all. And worst of all… it can change. However you are today, it could be different next year & you have NO way to know.
The other more subtle things you mention such as the way to hold a glass or struggle to eat – many of us share those. I know because I’ve seen it in person. However, unfortunately, it’s too subtle for most to notice. None of those things have ever gotten me any sympathy or help except from my own kids who ALReaDY get it, so they notice how strangely I move.
Please let us know when the thumb replacement surgery happens and we’ll pray for you.
Thank you. 🙂 There is no date for surgery at this time. A retired nurse in my water class said let her know too because she would come sit with me afterwards (awww). I just saw a new rhueumatologist and he was just concentrating on diagnosis. (I wrote about this over on fb too). My first doc at one point had said lupus or RA before saying he had no idea and it could be hundreds of things. My new doc says lupus or RA and he is leaning towards RA. I am supposed to fax him tomorrow or Thurs to check in and see where things are at as far as him being able to get my records and then more blood tests and xrays. He examined my feet and asked when I had xrays of those. Never, I replied. So perhaps I will be getting feet xrays. (Hoping hands and knees too). I just hope this time I get the diagnosis and go on with treatment instead of last experience. I feel more hopeful now.
Hi Kelly, So glad to hear that you are at least nominally feeling better. I watched for you all week and was very concerned and hoped that you were on vacation. Sorry you weren’t. Recently, I had a co-worker ask me if living in constant pain had changed me. I think that perhaps I am more cynical now. I truly wish that all could understand the hurt we exist in but I still try to laugh off as much of it as I can. Everyone’s comfort level is more important than mine. (I have read that here many times and I know I am not alone in this.)
Don’t you just hate, hate, hate grocery shopping!!!
“Healing is…”
Written and Posted by Susan Laurier @ Cheshire Chronic Lung Disease Forum, 6/21/01
Love is like water: it seeks its own level, like water flowing down a mountain. Bounded here by ancient cliffs of innumerable and unnamable sufferings and towering strengths that have fortified the soul in its travail–bounded there by unstable, undependable banks of clay that offer no support, only a treacherous and precarious sense of powerlessness–
Love is like water raging torrentially downstream, threatening to overwhelm our souls with its untamed passion while seeking out our dry, desolate hearts where, like boulders of terror, the flotsam and jetsam of emotional and physical, psychological and spritual debris obstruct the free flow of CHI, the life energy.
Water, life-giving and life-destroying, a mystery of the natural world that mirrors the internal universe of the Human Being, unfettered and yet bounded by obstacles both real and imaginary–
The sould cries out, “Nourish me, I am dying!” and suffers the agonies of feeling unloving and unloveable. “Oh, nourish me!” cries the soul as it wilts in the drought of self-denial and self-pity–or drowns in a flood of an obsessive narcissistic myth of itself.
How then to find a path to the healing waters, a path that is challenging yet safe? And who shall walk with this soul–to counsel wisely when the way feels too dark, the pain too unyielding, and defeat seems inevitable?
One looks around at humanity and feels a chaos of energies. Some kindness there, some cruelty here, apathy, rage, despair–and yet withal one intuits a mystical beauty, a mystical compassion, a mystical intelligence–
And sometimes these intuitions lead a soul to another Being, one who has known the pangs of being human and has acknowleged his humanity with humility and integrity–and the Being, who demands nothing of you but your truth, as you have accepted it so far, and your willingness to know yourself more deeply–
Beckons to you, invites you into the sanctuary of compassion’s embrace–
And you surrender your pain and fear into his care, into his hands– the Hands of a Healer.
Hi Kelly,
Mine was amongst the emails you missed; I guessed something must be very wrong because it’s so unlike you to not reply. I pray that you get better soon. Hugs!
Hello Miss Kelly. I have been worried beyond worried for you. My heart sang out when I saw a real post from you! The misery of the whole house down with the flu is so very hard. You want to be there for your children who are sick and want mom, but you are so sick yourself that you can’t even think of getting out of bed to go to them if you could. That is not even counting “The Lie” into the equation. There are many words I have come up with for this all consuming disease we all share a common bond with. Several of them are not decent enough to post here. Many times I call it “The Evil One”. The Evil One lies to me and tells me my legs will do just fine for a little trip to the bathroom. Then reality finds me on the floor from my legs buckling again. It tells me I will be fine to go out with my family for a nice dinner. Then “The Evil One” laughs in my face as I have to ask for food to be cut, have tables moved so I can get to the restroom in my wheelchair, etc. Once again it has made sure to define my life on its terms.
The fourth of July was to be an awesome day for my family. I rested up for it, did not do anything to over burden my body for 2 days. The big day comes and I get to sit in my old recliner with the permanent butt groove in it from me. My joints are laughing and screaming at the same time. My young daughter must adjust her plans and go with a friend to the parade and a cook out. I sit at home staring out the window, hoping she is having a good time. When fireworks time rolls around I feel up to rolling 2 blocks to the ball field and watch the neighborhood fireworks. All I did was sit and watch. We were there for 1 whole hour. It has taken me almost 2 days to anywhere near my “usual” self. Yet my joints do not swell and everyone says you look fine to me, what’s your problem. As was stated earlier, the LIE must end.
TOTALLY get what you mean….sorry Kelly:(
I’m sick of hurting and I’m sick of hearing myself talk about it..internally and externally…..the RA is here…….it’s not going anywhere (well nowhere good..) those that “get it” do and those that don’t ..well, I just don’t have the energy to explain that yes, they saw me do something earlier that day..or the other day …but that was “IT” for the day… I have to pick and chose what I can try to tackle for the day…always pending my “broken report”
CAN I do laundry today?? CAN I even lift my tea to my lips to take these meds?! will my throat let me swallow?! are my arms broken? are the meds kickin? ok I’ll try some……..
one day all my toes are “broken” ….what the heck?! …….the next day it’s my voice…my ankle….my elbows…and as we all know, it’s always a combo of “broken” parts……..and exhaustion..frustration…
who really wants to listen to the daily “broken report”?
I’ve been trying to focus on what ISN’T broken that day and enjoy it because I’ve learned it will change
most the time I feel like screaming……
“just because I can stand~up today doesn’t mean I can RUN!!”
“This is how it it’s been for five years all day, every day. Every joint. But, it’s all only my reality. No one lives it but me. Do you know what I mean?”
Oh, Kelly. ((((gentle hugs))))
I do know what you mean. Even with me being on a cane people forget. I guess it’s because it’s not them dealing with this disease that I wouldn’t wish on my worst enemy. Lately I’ve been feeling very down on myself because I can’t seem to make it through a day without pain meds. Sometimes I wish I could just pretend and go back to a time when this disease didn’t seemingly control every facet of my life. Go through that door you’re talking about. And I get very depressed when I realize that it’s pretty much forever closed to me. I want to garden! I want to learn to knit! I want to do beadwork again and learn some of the new and fantastic techniques I’m seeing out there. Heck, I’d like to take a walk without feeling like I’m coming apart at every joint. I try to count my blessings but some days it’s really hard. Sorry, I didn’t mean to turn this into a giant whine but I’ve been feeling down lately. (((hugs to everyone)))
Never give up hope. I know we have some older members around whose RA calmed down quite a bit as they got older. There is no way to predict but there are also new treatments in the pipeline all the time. I always say maybe someday. I refuse to give away my tennis racquet & knitting needles, etc. You are NOT whining! Hugs back. xo
This morning I have been sitting here reading and crying. The tears are tears of sadness, relief, pain and joy. I was getting some relief when the UTI took me back and of course have been off helpful(?) meds and will go back this week and hope for something. Then the new RA flare hit and my pain is ever so unrelenting creating problems sleeping and getting rest, and walking. Sometimes when I think the only thing working is my mind, I get attacked there too. The wreck we were involved in may have taken my vehicle, but did not cuse body damage other than soreness and bruises and we were truly blessed for that. The stress involved in all this is not what I need. At least we have rental insurance, so have a car to drive for now. It was during the week of your illness. Then my computer would not let me into my e-mail unless I updated and it is a mess, so I thought I would never hear from you again and I was so worried, that I had lost the only support I have. What a relief to have you back, but understand the struggles you went through. On top of the RA, we have to deal with the creeping crud too and the misery it brings. I am soooo Thankful you are better, and your family. One of my oops moments came last week as I was taking my pills and the glass did a flip with water going every where and into the container I use for putting my pils in. Grabbed the pill container with pills soaking and downed it anyway.(I use a tea bag ceramic holder to put the pills in). This time I laughed! I can flip more things, drop things and am a regular disaster in the kitchen. That RA lie that tells me I am okay makes me become even more of an RA Warrior.
The love you have Kelly touches so many lives, and just saying “thank you” never seems enough.
We struggle so. I pour my pills into a large plastic 2 cup liquid measuring cup. Then I can scoop them out with my fumble fingers and easily pour them back into the prescription/vitamin container. Then lighter the container the better.
oh, thank you. smiling & crying with you. comments like this help me shrug off the emails that just tell me to try harder and eat better.
I hope your car situation is fixed soon. That reminds me to call to be sure my rental coverage is active too.
try harder and eat better?? People are so cruel!! Everyone seems to have a diet comment don’t they? I tell people since I am veg that I already eat a diet inline with a low inflammation diet. Or, and some have been well meaning family, they’ll say maybe it is just tendenitis or a virus. My response has been I have been told by three medical professionals (more than that now, like 5) there is something clearly rheumatological wrong but they just haven’t named it yet. I actually want to get a tattoo when I get my official diagnosis but I guess that is a no no. I am more mild right now so unless pred is an issue, maybe I should do it now. I just want a small RA ribbon. Sorry, off topic.
just wanted to add……
totally feeling all you moms that are struggling to give your children what you want but cannot physically provide.
TOTALLY THERE
I’m single with four children and can hardly believe that now I have disease to deal with on top of everything else…….2 yrs ago diagnosed….
however…..on my positive moments I do see how my fight with this disease is teaching my children compassion..empathy…and let’s face it~independence that will serve them well in their futures
I’m trying hard to let God help me parent since all my bright ideas have gone right out the window with this disease.
I spend too many hours crying and just coping with pain and “getting moving” then it’s compounded with the audience of my children so always trying to suck it up and work that “lie” 🙂
what I have found so far that matters MOST with the kids….even if it’s not the “super mom” plans in my head… is just my presence
just BEING with your kids means more than you think…..
hang in there moms!! savor the small moments ♥♥♥
completely agree.
Kelly thank you for this, my PCP informed me I now have pneumonia in the r lung, which he feels the Orencia and Arava caused. He strongly suggested no more biologics for me, I left the office in tears, since I know that means back to not being able to walk or hardly move. It is hard to accept thats the way it is. I was diagnosed with RA back in 1995, only in the last 2 years has RA decided to become very active. The funny thing is you would think with all the meds my inflammation would be goen, thats the lie we cling to in hopes of being okay again. So praying now as to which way I go, no more biologics and live longer, or continue with the meds and live a shorter life. I love your blogs, as the others says, it helps knowing someone else is in the same boat. I’m blessed as to I have a cousin who also has severe RA, she is my mentor in living with RA. She made me laugh yesterday instead of crying, as you put a smile on my face when I read your posts. Please keep up the good you do with baby steps so you can get better too. You are in my prayers as well as everyone here who has RA. Thanks for listening.
I live in a very small town. Everybody knows everybody else and usually their business. It is so strange how little people know about RA. I was diagnosed back in Oct. Seems so long ago but I know I have a very long road ahead…People just don’t understand what they can’t see. I want to go back to the post where 1 person could share in my RA experience for a day. As I see it I have 365 days a year with RA, I would pick someone new everyday. I really find that I have become more and more secluded because I just don’t know what to say anymore to people who mean well but give advise without trying to educate themselve on the matter first. I am in pain, misunderstood and cranky as all get out. I push myself everyday and watch slowly as more and more of the things I enjoy dissappear from my life. I am too busy just trying to do what needs to be done. Not alot of me is leftover. Thank you for this site. Although I don’t think they understand what I am going through, I take the time to print the articles and share them with my family. This way maybe they will understand… I AM NOT ALONE IN THIS! Thank you for being there with me. I look forward to every word you write and all the fellow RAW followers! Please be well. Sending prayers, gentle hugs and Angels to all of you!
That hit home. I understand what it is like to every day see something else you enjoy be taken away. To be able to go on a light hike or a bike ride or even go up and down stairs without feeling so overwhelmed. I see those RA/lupus walks posted sometimes. I assume it is more for supporters than those suffering. I am hoping to get all my family on board with what is going on. As far as making new friends (I am too new here to know very many people), I am sticking with those who understand some from the beginning. Like the older ladies with osteo at my arthritis foundation water class. Or someone in a wheel chair or someone trying to get diagnosed.
After years of living with RA and hearing you look great! I gave up! My husband see’s the pain and the struggle everyone else are blind to it! They look at you as if your crazy, also after years of telling my doc how I feel they finally said oh yea! you have what we call overlap RA/Lupus.
I am tired of the fight just to stay healthy, and everyone at the ER looks at as if your crazy. With my lungs filled with inflammation what a life! Will it ever change? Will they ever understand our pain? WE NEED HELP!
I know this will soung like im complaining,and maybe it is .But I dont understand why my family acts like this is no big deal no one talks to me about it or asks me how im feeling its really feeling lonely mostly bc i waited four years for the levels to read in the blood test and i only got diagnosed a couple moths ago,but those closest to me know i have been in pain hell for a long time.My husband is tryinng to be supportive but he doesnt understand what is going on with me and I think hes scared of whats to come,truth be told im terrified and im trying to be informed but the more research i do the more scared i become,why does this have to be so unpredictable? I havent felt so alone in a long time ,but im so glad I found this on Fb .Glad to have people who understand to talk to.
it does not sound like complaining to those who are going thru the same as you.
“But I dont understand why my family acts like this is no big deal no one talks to me about it or asks me how im feeling its really feeling lonely..” That sounds pretty common & it’s not just you. I think those are some of the reasons I call it The Lie.
It helps me to know I’m not the only one. I hope that helps you too.
Kelly, Sooooo glad you’re back-I was worried. This is definitely a post that we can all, I’m sure, relate to-I sure can. Although since moving to Hawaii the lie is harder to believe as I’ve been almost constantly ill. Two staph infections, I think the 3rd is creeping up as I type grrr, and a kidney infection-all in one month! The E.R. doc said he thinks the RA has now gotten in my kidneys,gee thx doc just what I wanted to hear. I see new rheumy on 28th so I’ll wait till then to get po’d! lol Anyway so glad you’re over the treatable illness and back in our lives again 😀 (((Kelly)))
Kelly- you write what we all feel – and thank you for that. To let ones like me we are not alone in this misery. My RA Dr. is starting me on Humira – which my husband thinks will be the cure all – will put me back to normal. Does anyone have comments regarding the humira and how it working for those out there?
Sometimes I find myself telling people, “I’m not making this up.” ‘It’s just a plate with a piece of cake on it.’ “Yes, but I can’t lift it.” I have reached the point, however, that I am not ashamed to ask for help. Cutting steak? Heck, some days I can’t cut French toast! But God gives grace for each day, and I am grateful!
exactly right, Melissa.
I really relate to this. Right now I am on a maintenance dose of prednisone & Humira shots every 2 weeks & woke up this morning w/ both hips in full flare. I get so tired of my family asking me “What’s wrong?” if I am quiet or irritable. How many times do I have to say “I AM IN PAIN 24/7!!” It never goes all the way away. NOTHING makes it stop, predinsone, methotrexate w/Humira,Tramadl, even 7.5mg Lortab can’t touch it. I LOVE my family & want to be “normal” again. But the lie is alive & well in this household. I just wonder what it is going to take for them to all realize how much I hurt? Or how good I am @ hiding it & faking my way through life?
I know. it’s like either fake that it’s not so bad – or be sounding like utter desperation every day. How many times could a person be taken seriously saying stuff like “it’s the worst ever” ? how worse could it be, right? Many people do get a lessening in the symptoms now and then so I’ve been asked, “well how come so and so can do all this and you claim you can’t?”
The Lie, seems like a easy word for such a complicaed illness. My “lie” gets worse every visit to the Rheumetologist. Prednisone has destroyed my bone density, and fractured 3 vertibray, compressed 2 more and is causing my spine to curve in an unatural way. I was only diagnosed a year ago.”Aggressive” is the label. So I have an Aggressive Lie to live. The world just does not get it. I look so normal. The lines in my face have to show, from the pain lived every monent. I’m only 46, how can I be failing so fast? I’m mad as hell, Is anyone else mad? I could use a dose of phycotherapy,but this anger might be what keeps me going, not letting RA win. I might lose in the end, but I must fight for my kids. For me and my hubby. I want to grow old with him, and I don’t want to be a burden.
your response sounds very reasonable Rebecca & I have the same line on my forehead – unspoken pain. It reminds me of a post I wrote about anger last year – click here.
Sending you lots of love Kelly, take care my friend xx
Firstly Kelly I like everyone else, am so pleased to see your post. Each day I sneaked a peek here and knew after a few days that things could not be well. RA makes other illnesses so much tougher to handle doesn’t it? I know for me it’s a bit like the proverbial last straw. I’ll just mention that you may have noticed that I’ve changed my ‘login name’. We mentioned it a while ago and I decided on something that is plain and simple me (though I’m pushing the ‘lass’ part I know).
I thought that I had defeated ‘the lie’ but then at different times when pain lessens albeit briefly and/or when it shifts, I catch myself thinking “Maybe I don’t really have RA” and on a ‘good’ day “See it’s improving, it isn’t permanent” and then I move and reality hits. The peculiar thing is, the worse I get the more frequently ‘the lie’ seeps in. I think I really do understand Kelly.
The progression of my RA of late has been more insidious. Early on it was more evident – like a sledgehammer. My toes seem to shift further not suddenly, but slowly over a couple of days and the pain increases as they move. A few weeks/months ago I was at the dropping things stage and I still do but now have swelling and pain in my distal joints, one finger in particular, then another and so on. I didn’t realise before just how much I used those joints and for me how much pain could be packed into such a small area. My left knee is permanently swollen now both bony and fluid swelling and is easily noticeable. My fingers are getting stiffer and the pain in my lumbar spine is nastier. My knees were a problem long before my actual diagnosis and the pain is hard to ignore.
Moving onto my feet/toes they are twisted and I physically have to move them with my hands to be able to shower without real discomfort. But given the slightest relief my thinking jumps back to “It’s gone” or “I’m better”.
Up until now I think I have coped reasonably well with my limitations, but lately the tears are nearer the surface and they fall much more easily but usually in private. I am concerned for my future and with my mum as my only family and my house-mate an adopted family member, as my RA progresses, my thinking shifts to the “what if” and my future. Maybe for me this is the reason that I’m so keen on grabbing hold of ‘the lie’ even if only briefly and for that short time I believe it.
Dear Kelly – and to all – thanks for this wounderfull support group that I have found here on the web- where others like me can read and relate to what the RA is doing to us and how we seem to have to mask what we really feel because of the lack of understanding. you have done a great service to us all – Kelly for putting this blog together. god bless
Kelly,
I do hope you are feeling better. Your heartfelt post and it’s honesty leaves me feeling humbled.
The Lie is present everday but less physically aggressive towards me at present (thanks to biologics & mtx) but the fatigue and the desperately trying to be who I was has left me weepy and uncertain. I don’t know who I am, I feel lost. I’m not the old me any more and yet I can’t find a new me. I try so hard to keep up the working persona and then feel I fail at home. I feel so very lonely. I love my husband dearly and he loves me but I fear that unless I get a handle on this I will drive him away.
The community here is such an inspiration and reading the posts and being able to write my true feelings has helped. Thank you so much.
Thank you so much for your post, Jane. I agree it can be a lot of pressure on our hartners or care givers and it takes some of that pressure off if we know we have others who understand. So, we won’t demand quite as much from them hopefully, if that makes sense.
Bless your heart for trying to keep that up at home too even when you feel lost. I’m sure you’ll have better days than that, but you don’t have to push yourself too hard either.
Kelly
Gosh I feel alone, especially at 2AM, but thanks to blogs like yours I can get some releif from the misconceptions, misinterpretations, and lack of understanding about this disease. As always you have my best wishes and hopes that you will continue to help us understand the real issue and not buy into the lie that we can just choose to take control of our symptoms, sometimes we just go along for the ride.
Take care
Phil
Thank you Phil. That’s such a good point. No matter how hard we fight, many of us still face this spectre every day. If we are along for the ride like you said, maybe it’s like trying to tame a wild bronco.
Wow… where do I begin? I am so emotional right now after reading this post and some of the comments. I am 30 years old, and I was first diagnosed with RA a little over a year ago. I just found your site doing a google search. I was trying to find an article or something I could share on Facebook that would explain to my friends and family what living with RA is like. Often times I still find myself in denial, or with a ton of anger.. then there’s good ol depresion… been dealing with that so much lately. It’s so true that no one understands what this is like. Im my case, I don’t think anyone in my life even makes an effort to understand how this terrible disease makes me feel and how it is affecting me, and could affect me in the future. I live with my mom and brother… you’d think that’d be great… at least she has some help for those really bad days. Nope. I don’t even talk about it with them, and if I actually ask for help I have to really be going through hell. They just make me feel like I am being a baby and it couldn’t possibly be as bad as I say sometimes. I currently work full time in IT, and go to school full time at night. A couple of months ago my RA started getting REALLY bad again (thanks to having to stop taking my meds because of an infection that wouldn’t clear up). I went from being an all “A” student to straight C’s. I was very upset about it and tried confiding in my mother, I mean, I really needed someone to talk to! I was going to say “my grades really dropped because of my RA affecting me so much lately” – but mid-sentence she interrupts me and says “because you’re lazy.” Wow, really?! Yeah, I am lazy, thats why I got straight A’s until now. I’ve never talked to her about my RA or school again after that. That hurt so much. Then there’s work. I swear my boss thinks I make stuff up. I swore to myself after I got my diagnosis that I would never call in sick to work due to my RA. That was such an ignorant promise I made. I’ve only called in sick maybe twice this year, but I was told at my midyear review to make sure I am think about how my calling in affects the other members of my team (also had 2 call-ins for other, uncontorllable reasons this year). I just wish my boss would take some time to read up on it and get an idea of what I go through. I don’t like missing work, I HATE having to give in to this disease and take a day off. I HATE having to choose being loopy on narcotics instead of doing my homework. I HATE RA and all of the BS it puts me through… do people think it makes me happy because I have an “excuse” not to do things??? I just want my life back. I’d rather have the RA be gone and work 80 hours a week with no social life than this. I am sorry to unload here.. I know you all can understand where I am coming from, I just wish those close to me would try to…. Thank you for this blog. I hate that we are all going through this, but it means so much to know I am not alone.
Nellie, RA is a very emotional on many many levels. there are times that it becomes too exhausting to even attempt to explain it to friends and family. I have, on many many occasions, simply forwarded Kelly’s posts with a note to also read the comments. Some times I get a response about it and sometimes I don’t. And I am OK with that. I know I have ‘spoken’ my mind with out their interuption, their hurtful comments and the condesending remarks. These are Kelly’s words I forward on.. but she speaks for all of us! I’m glad you found The RA Warrior.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ Here is another good one to post.
Thank you for this. This article does so well explaining what life is like. This is definitely one I will be sharing.
But Gosh you look so good! How many of you are sick of hearing that? Does itreally mean get over yourself already and quit complaining! My mom repeatedly asks why my house is such a mess though I work, have three kids and am having extreme difficulty with the ra right nnow. It is hard to comprehend what you can’t see I get that. I’ve given up hope on getting the empathy of others. No matter what, they expect me to be me and to provide what I always have. I do my best to do what is expected of me bc it gives me joy to do my job well and to Take care of my family. It just hurts when they feel the need to point out im not what I used to be…
Yes, if they can’t see it, it must not be there. I was just turned down again today for SS Disability, now I go before a judge. I am 55, started working when I was seventeen. Other than 1 1/2 yrs while out with a back injury and 2 operations in 2005, I have worked two jobs for a lot of that time. What someone sees when they look at me now is an older woman that is 50 lbs overweight(thank you Prednizone)so I must just be lazy, right?? I can’t even talk about it right now without crying and I am really tired of that. This current Dr just rubber stamped it, admitted as much, used the same medical info as the first one. That included my first office visit to my rheum dr. Stated that although I have some arthritis and it may cause some pain and discomfort and fatigue and weakness, it wasn’t enough to cause significant limitations. I don’t even know what to say… what is enough?? I got copies of all of my return visits and sent them in, don’t know why he didn’t read them. And that included a recent MRI of my spine that shows three discs bulging. As it is I have a sink full of dishes that I have been trying to talk myself into doing in shifts. That will go over real big with an employer huh, let’s see I can do the glasses, then I have to sit for about 5 to 10 minutes, then the plates, hopefully I won’t break one, never realized they are so darn heavy!! Oh sorry, another rest. But if I don’t my back is going to scream and my hands will puff up and be useless and I just might need them. You know , to drive home or lift a glass for a drink or open a door. Even taking care of potty duties can be an issue. I’m tired of lying to myself that it will all be okay. That I could if I only tried harder. I can’t, okay??? Because if I could I would already be doing it.
i am crying right now- thank you( and i mean that) and i want to say sorry i really do understand just coming to the reality i have ra and this is the first blog, ariticle or anything that hit home about the lie. thank you i need to be more honest with myself and start doing something besides lieing. this article and stuppid response is a start.
wish you well in everymove you make.
I recently saw a friend in a doctor’s surgery, we were both there for our kids her with one and me with my three under six. I had a rare moment of “letting the crazy out” and just said exactly what was going on with me.
Wow what a mistake. The next thing I have my best friend (who is our mutual friend) calling me. “I’ve been worried about you for a while” “I see you take pills alot” yadda yadda.
So then, I have to go through the “I’m in real pain” speech. Which always gets blank looks (well, we were on the phone but you can still get blank looks there). That I have to take the prescribed pills to function on some level, that it only puts a very small blanket on the pain and it never, ever lets up. In every part of me.
Then she suggested can’t I go on rehabilitation and strengthen my muscles to get better! WHAT the …. &*%$# This is my best friend, and I thought she had at least some understanding. For …. sake.
After my third baby I put on loads of weight. My father would tell everybody who would listen that if I just lost weight I would not have RA anymore. I lost all the weight. I still have RA – TA DA!!
Huhpf. Well, thanks for being there Warrior Queen. Awareness is key and venting to those who have a clue is a Godsend. Keep up the good work. Hey! Maybe I could suggest a weight-loss clinic or some strengthening exercises and our RA will disappear?! MAGIC
PS the only way I lost weight is to go off the Prednisone (which is why I became Mrs Blobby in the first place) and get allllll the pain back.
Then I get to take loads of pain meds so I could exercise.
And Yep, “But you look so Great!” I get that a lot. Whilst my teeth grind and every joint is screaming. It’s great to look nice and get lots of compliments.
It frankly sucks to have to put myself through more screaming pain to get and stay that way.
Nellie, I am in almost exactly the same situation as you. Talk to me anytime, email me, I’m not sure how as I don’t want to publish it, but either way, know there’s someone here just like you. Young, and in this spin of rubbishy drugs and denial and anger and frustration and and and…
Doctor brush offs, begging/arguing with pharmacists, arguing with yourself, getting your family off side. All of it.
PPS If someone offers me another miracle cure I might just kick them (that is if my feet are OK at the time which will be unlikely, but hey it’s the thought that counts!).
My doctor wants me to go on Humira. I don’t ..want to as I am scared of it. Destroying an inheriant part of you just seems the wrong way to go (even if it’s destroying you), I know my logic is off but..
I would like to know more about it too please!
Breanna, I’d love to chat with you sometime. I am currently only taking Methotrexate, which makes me SO sick… and my doc wants me to start on Humira too. I don’t feel I know enough about it, so even though I have it sitting in my fridge, I have yet to inject the first dose. It scares me, all of these medications do. And I am right there with ya, ready to kick the next person who has a miracle cure to offer me… I can’t tell you how many people suggest PT, exercize, etc… Exercize would be GREAT if I could do it. Heck, I would be happy to walk my dog on a regular basis! If my knees and/or feet aren’t in too much pain to walk her, then it’s my hands being in too much pain to hold her leash with her attached to it. Oh what I’d give just to have the people in my life at least make an effort to try and understand or at least act like they care… I emailed that article someone posted above on “The Spoon Theory” to all of my family and some friends too and not one single person bothered to reply to me… Seriously?! (Thanks family, love you all too!) I don’t really want to publish my email address either, but if you’d like to contact me I have a yahoo email address I don’t really use… I can check it and give you my “real” email addy… just add “2s” to the end of my name and then the “at yahoo dot com” part and you’ll reach me 🙂
Humira is awesome. It’s helped me for 11 yrs now! Mtx though makes me very sick. Good luck!