I keep having trouble making people understand that RA doesn’t affect me the same on any two days. Today it is my hands, and yesterday it was my feet. Tomorrow it might be my knees and hips or all of the above. I’m tired of my dr telling me that it can’t possibly be affecting my spine, neck or jaw when I am showing him that I am in pain in these places as well as the usual ones. I lost my job because of RA, I’m having to fight for disability because of RA. I don’t see any end in sight to problems because of RA. I would love to give my RA to the people that have made my life even harder than it is. Just for a month or two. I keep seeing all these commercials with happy active people that are taking one RA drug or another, it makes it look like we can all just take this med and get right on down the road. Some of us can, and I am really happy for them. But for some of us the meds work sketchy at best and we aren’t the happy active people in the commercials who have fought back and overcome RA. All the pills in the world have not helped my attitude towards life with RA. Now that I am unemployed there are not pills at all, and no one is going to help because I can’t show that I didn’t make little enough money before I was fired.
Ok sorry for the rant, but I had to get it out of my system.
Go ahead and “rant” a little if it will help someone understand this! It’s not our fault if they have not created a med that worked for our RA yet. I’m so sorry to hear about the firing. 🙁
A few months back I tried to explain it to my 22 year old step son…who was whining because his dad lets me sit on the couch but not him…Remember what it feels like when you hit your thumb with a hammer,then multiply that by every joint in your body including your jaw, neck and spine. That is how my joints feel when I am not moving them, when I am moving them it is like hitting them all over again. He did not understand. He recently was in an ATV accident and has pins holding his thumb together and still does not understand how I feel (He thinks I am supposed to wait on him hand and foot now because his thumb does not work)The joints on my hand show the damage from severe RA that did not get treated soon enough but he thinks one sore thumb is crippling. People just do not get it, even when they can see the joint destruction they still don’t get it…I think they just do not want to get it
I’ve been skimming through your website for a few weeks now. I’m 24 and got diagnosed with RA about three years ago. I’ll admit I haven’t read everything on here but when I just read that you are among the few who don’t respond to treatment my jaw about hit the floor. I had insurance problems in the past so I went through a six month period without medication I don’t know that I’d be strong enough to make through every day like that for years! The fact that you live with that kind of pain and still live is amazing.
Dear Melissa,
I’m sorry if I confused you that there are few of us like me. At least 1/3 of RA patients don’t respond to current treatments. Only 20% respond with an improvement that is about 70% improvement. Depending on how severe their disease is, that can be relative… Anyway, about 44% of patients get about 50% better with Biologics & mtx in average clinical trials. Unfortunately, even they need research to come up with better answers, because that improvement is almost always temporary – can last from 3 months to 10 years, but then most need to find a new treatment. Here is one of the articles about it: http://www.rawarrior.com/new-way-to-report-response-in-rheumatoid-arthritis-clinical-trials/
It is very hard to live with the combination of constant inflammation/flare, all joints affected, and being a non-responder. It is very hard every day. But we just do it – I think as far as I can see, at least 20% of RA pateints are in this boat with me. Most of us deal with it by using long-term prednisoone or high dose nsaids or both and pain medications. The disabitly is the biggest issue, but it’s also hard that most people don’t understand, even some others with RA. I was off treatment for a few months last year also, and there was more swelling, but the rest was about the same.
For me the difference between having the medicine and not having it was extreme. I was lucky that I responded to the treatment they put me on with in weeks. I thank God every day for that. I know those six months without treatment I was in tears just trying to make it to the bathroom. The doctors I’ve been to give me treatments but as for info about the disease I got more information just googling RA then I did from my doctors. I had no idea what to expect when I stopped treatment. And even though now that I’m being treated I have a lot of days I feel completely normal I still don’t really know what to expect in the future. I hear all this stuff about remission and flare ups but its all really confusing! The hardest thing for me right now is I also have Thyroid disease, my main symptom for both is fatigue I have days at a time where I just don’t have the energy to get up and do anything and when I try to tell my doctor this I’m told there’s not really anything they can do about it when all my levels are testing normal. It is so frustrating especially trying to explain to friends that yes I’d love to go out and do stuff I just don’t have the energy to do it!
I do cry many days. But I hold onto hope too since there are so many like you who tell me there can be hope – between science and faith – there’s hope that it can get better.
The fatigue could be from either one, of course. But it’s a typical thyroid symptom & patients usually can tell when it’s not “right.” Sometimes when the TSH is in normal range, the T3 is still low. I had the same problem the year I had my last child and my RA went full-blown – the thyroid went nutty. Even though I’ve had thyroid disease for 30 yrs, it was much worse than before. Anyway, I found a good endo doc who explained about the T3 and convinced me to try a small dose – I cut the lowest dose pills in half because I was so afraid of becoming hyperthyroid again (tachycardia, lack of sleep, severe weightloss, headache). The doc said sometimes, the body doesn’t efficiently take the artificial T4 and convert efficiently to the active form T-3.. For me and a couple of people I’ve talked to, that was the answer. I’m just a fellow patient – but if your meds don’t help it, maybe you can ask a doctor if this might work.
Wow, I think we might be about the same person! I am 24 and have been having symptoms for 3 years. I haven’t been officially diagnosed yet because my dr (who is my mom and 2 sister’s doctor as well – yes, all four of us have RA) thought it would be a good idea to wait til I was on more permanent insurance. I’ll be going back soon for diagnosis and treatment though, cause it’s getting to be more than I can handle. But I also have thyroid problems – hypothryroidism. So I completely understand what you, and everyone else of course, are experiencing with the fatigue. I haven’t ever not been tired in over 4 years. For me, the fatigue is by far the worst symptom of RA and Hypothyroidism, though the pain is starting to catch up. And like you said, I have a hard time wrapping my mind around the fact that this will never go away. I look at my oldest sister, who is 10 years older than me – I got symptoms at least 2 years younger than she did. She is so sick, it breaks my heart for her and scares me to death to think I could get as bad as she is. Hang in there, Melissa. You are not alone!
Yes, it’s so discouraging. Even my family doesn’t understand, and I’m partly to blame for my mom’s depression, because I’m sure she had it, and I being of sound body at that time, didn’t understand her as well. If I believed in karma, I would believe that it was some payback for that. However, it has made me more sensitive to my GI patients who have autoimmune disease, and more willing to send them off to rheumatology after a consult, when I suspect sero-negative autoimmune disease. RA prevents me from being active, I see stairs I can’t climb, and used to run up.
Imagine as well, the frustration of a friend who is Deaf, unable to speak because of her RA…
Roselynn,
I just had to reply. It sounds as if you’re taking on so much guilt that perhaps you shouldn’t. Due to your “I’m sure she had it” comment about your mother, it doesn’t sound as if she had an official diagnosis or one you were told. How could you have understood? Even if she had a diagnosis, mothers often keep the worst of their symptoms of RA from their daughters and sons, as they also sometimes keep the depth of depression from them. Depending on your age at the time, daughters and sons can also be obvlious and a bit self-centered. I think of this as nature’s built-in drive that compels them to separate from their mothers and go out into the world and allows moms to let them and be happy! If your mom had RA and now you do, too, this isn’t kharma: this is inheritance, predisposition.
I’m still lucky enough with my RA treatments that I can work 40 hours weeks. It’s difficult– but I can do it. Recently, I was invited to attend a staff meeting. When I arrived at the meeting place, the table was at cocktail height and the chairs impossibly high for me to climb up on. I just remember starring at the chairs and wondering “How am I going to handle this?”. My rest of the staff and the organizers all knew I have RA. But it never occurred to any of them that I couldn’t climb up onto a chair. I ended up looking like a fool. I grabbed a normal chair and sat at the table with my chin at table height. All the people in my meeting thought it was a hoot. I think I felt humiliated and concerned. If sitting on a chair is a problem today, how long before I am no longer able to work?
I know just what you mean with the bar stools. Good illustration for the way it never occured to them.
Babs, I’m sure it’s very hard for you, but I know the longer you can work, the better. It is so hard to give things up that you used to do or that help identify you or provide for your family. Hopefully, you can work a few more years, or maybe fewer hours will be an answer one day. And hopefully there will be ways to make it easier for you at work.
It is amazing to hear from other RA suffer-gists the same things I have told my family for years, but they got tired of hearing it about ten years ago. Now, I ask if I can rant and vent…not that I should have to ask but it seems to help around here.I’m going to National Jewish Health in Denver next Monday, as my doc told me that this is the best I may ever feel.Now, I’m not doing too badly, not great but living(you know) I am worried they won’t find “anything” and I won’t get the relief I need. I don’t live in Colorado and it will mean travel,lodging and meals plus the Dr. visit so I’m a little worried that it may be a waste of time?,So many shots and meds have not worked on me and my insurance is getting snotty because an Enbrel shot every five days would work better than one every week, and they don’t want to pay for it. But they would pay $100.00 toward Orencia IV that is close to $3,000.00…how nice! This is BCBS insurance. Maybe I could qualify for a program or some help? It is nice to be able to vent here, thanks!
Hi Sarah, love the suffer-gists word.
If you have insurance & it doesn’t cover enough, each pharm company has a program to help with the payments thru a Patient Assistance program. I’ve found them easily by searching on Google. Anyway, good luck with the trip and the appointment next week!
It is constantly frustrating to live with this day in & day out. 24/7 365 with no holidays. My friends & family forget that I have the constant pain & inability to do all the things I was able to do before RA bc I would have a relatively “good” day meaning I could walk without limping or grimacing with every step or every time I would try to pick up a cup of coffee(forget handles- so not my friend!) In public, people stare if I ask someone to lift something to put in my cart so I take my daughter with me & shuffle along now. Those trips are getting shorter & shorter! I certainly miss the trips to the mall though- I always loved browsing through the shops & walking through the whole mall for the entire day, especially during the holidays. Now, online shopping is all that i can tolerate. Even that takes it toll on the hands.. speaking of which- time for a break.
Sorry for my melancholy “walk” through the life before the monster.. Thanks for being here. Pain free blessings to everyone 🙂
Hmm, a list! This has been honed just recently because of visitors in my home. My husband understands and I don’t have to deal with any of this from him, but my mother, who I have basically “hired” in the past to help me during flares still has me saying some of these things to her:
1. Yes, even though there are just 2 of us, I need a booth. I can’t sit in those hard wooden chairs, no matter how long you stare at me waiting for me to change my mind. If I try, I will leave this place with a fever and it will cause horrible pain that will last for days if not longer.
2. I am sure that picture that is on your computer behind me is AWESOME, but can you please just send it to me in an email, because turning my neck is not an option today, and I don’t see why I should wrestle myself up out of my chair in order to just stand up and turn around and look at your AWESOME picture. Really, just send it to me in email, even though we’re in the same room.
3. I would love to come sit with you in the other room, but the furniture in that room is from the 70s and I can’t sit in it without getting “stuck.”
4. To someone who has helped me because of RA flares in the past, but still doesn’t get it: pretend you have no hands. Can you think of all the things you use your hands for? No, it’s not the same thing as when you were blind because you had cataracts removed. heh.
5. Banana pudding? With all that stirring? HAHAHAH! no.
6. I can’t come to the woods with you because I can’t carry my pack, can’t walk the mile to the site, and can no longer sleep on the ground. It’s very kind of you to offer to “kidnap” me and take me out there, but it’s not the ride I need, it’s the back, hands, knees, shoulders, neck and feet that I need, sorry.
7. I’d love to make plans to do X with you on Y date, but
I don’t know if I will be completely immobile or having a decent day on that date, so I can’t invest the $ for hotel/flight right now. Maybe there will be more stability in my life at a later time.
8. Tonight is MTX night. Yes, it’s chemo, no it’s not the high dose that cancer patients take, but it is chemo. No, not many people have heard of it being used for RA, but it’s the first aggressive drug most diagnosed RA patients are prescribed. Yep, really.
9. Lord no, I don’t want to “just try” something that boosts my immune system. My immune system is evil and aggressive and I don’t want to feed it.
10. I’ve been vegan, I’ve been vegetarian, I’ve tried the mediterranean diet, the “RA diet,” the southbeach diet and several detox/fasting diets. I’m done trying new diets. I eat as healthily as I can because I don’t want to gain weight, and I want my heart to be as healthy as possible, and I do get a ton of omega-3 and nutrients in my diet and supplements. No, really, I’m not going to try your diet, I’ve got enough to worry about without going through the hell of replacing most everything in my cabinets. Again. And, no, it’s not salt that is causing my ankles to swell.
11. Thank you for hoping that I’ll get better soon. I do too. Yes, I’ll let you know if I do, because it will be a very happy day.
12. I see you are in my area. I would love to meet up with you, but I really, truly do not feel like explaining all the ins and outs of what that would entail. I am sorry, but I also do not trust that you will tell me the truth about whether or not you or someone near you recently is sick. I am sure you are more honest than the last person who came into my house with a bad cold, but I can’t risk that; it is actually dangerous.
13. Call it slacktivism if you want, but I literally cannot go occupy someplace and hold a sign up all day, or be in the sun all day, or sit or stand in unfamiliar places.
14. Yes, a 5k is out, too. (lol?)
15. Oh, I know it’s only 1 floor up, but I will be taking the elevator. My knees do not do stairs.
16. It’s great that knitting helped your grandmother with her arthritis. That’s just so awesome! But, no, I can barely even write with a pen. (some days I can’t)
17. Sure! I’ll try your friend’s Reiki Healing stuff if they will do it for me for free! Oh, you mentioned to them that I have RA and they have changed their mind? Oh well. 🙂
18. There’s a reason I have a favorite cab driver and that I won’t go anywhere unless he is on duty that day. He backs his cab up as close as he can get to my house and opens the door for me, when I get in, and when I get out. This has nothing to do with gender equality and everything to do with bad hands not being able to open car doors.
19. I am sorry I forgot your birthday/anniversary/daughter’s name/my appointment/etc. RA causes something we call “brain fog,” so I’m not all there a lot of times. No, as far as I know, there’s not “something the doctor can give me for it.”
20. Oh yes, I will be exercising as soon as I either get a pool installed in my yard, or the doc orders PT (pool therapy). Anything else is out of the question. Yes, even a walk around the block. I’ll walk with you to the fence and back if you like, but walk close to me, not only to help me balance, but so you can hear what pain sounds like.
I was trying to think of something I might have to say to gamers who want me to play with them, but, thinking about it, gamers have responded to me with more understanding than any other group has. My spot is permanently saved for me, and the main question I’m asked is, “are the meds working yet?” and I’m told that I’m missed. Maybe they are able to realize that I really want to play and the only reason I don’t is really, honestly, seriously, because I can’t. Especially right now, because the new gear for my mage will be called “Time Lord Regalia!” Want! 🙂
That was simply awesome! I could not have put that into better words, seriously- I’m in a brain fog!
I wish I had a cab service, that I need to add to my list!
Thank you so much :heart: & :stars:
haha, thanks, it was fun to write. some cities allow cab drivers to have their own customers who call them on their cells and don’t have to go through the cab company, but some cities do not allow it. that doesn’t mean that the cabbies won’t do it. when you find a good one, just ask for his number. 🙂 my cabbie’s name is abou (pronounced aboo), and he’s not very personable or anything. usually he is on his phone speaking very loudly in arabic. sometimes he complains (with a smile on his face) about his wife, who, after having their last child, is still having major cravings and calls him to bring her food all the time. once he even picked me up with his two other kids in the cab because he knows he can’t just send one of his buddies after me. he did that once and later that day, he called to ask me if the guy opened doors for me and stuff and when i said no, he started yelling, and then apologized to me and said he wouldn’t send anyone after me again. lol
oh yeah, and when you find a good one, tip well and call ahead of time, and you’ll always be very valued to them. gas prices are high and so are their cab leases. cab fares are expensive, yes, but they have a very high overhead. i used to drive and dispatch. 🙂
I suppose I’ve been on the lucky side of this issue in that I have finally figured out what works for me, but it took about 15 years to figure it out. I usually have a joint that is acting up visibly that helps me explain my situation. I’ve gotten to the point where I don’t even start with saying “I have RA” anymore because that invites the gratuitious “Oh I have that in my *insert joint here*” comment & blow-off. I start by saying I have an autoimmune disease that disintegrates my joints. At that point, I show them which ever joint is acting up, usually my ankle, and it gets like 3 times the size of my other one. At this point I tell them “they” call it RA or Rheumatoid Arthritis but the arthritis part of the name is really more of a side-effect then the actual disease. That usually starts the discussion about the disease and what it can do to a body. It sometimes takes more than one discussion to get them “trained” lol and truly understanding of my situation but that’s ok. I will tell people a million times if it means people are more aware, ask more questions and maybe even flips the lightbulb for someone else who may be suffering. Until this past July when I was surplussed, my job was a Sr. Customer Service Training Manager. I still worked 40+ hrs a week, traveled all over the US and had days where I was in the class training over 8hrs a day. Because of my educating my peers at work, there was greater acceptence of my bad days. If I was having a bad day, they learned to recognize it and would offer assistance. Now I have to figure out where my life path is being directed and what my next step is. I love this site because I know I’m not alone in my boat. Best wishes and hugs to all.
I am so lucky that my DH doesn’t complain when he has to help out more with my son. I am in the midst of an RA induced tendenitis flare in all of my major tendons (hip/groin area, shoulders, ankles) and moving is agony. Reading your post, I have to agree, I would have been in agony about half way up those stairs and barely able to walk after standing there very long. But I’m very blessed to have a spouse who understands.
On very rare occasions, I’ve added the Facebook discussion link here – the conversation here is amazing – Trill’s comment above is so funny & very popular with readers. But also the Facebook posts are very informative!! http://www.facebook.com/arthritiswarrior/posts/149752715121436
I’m sort of seeing a pattern here. I have had thyroid problems since I was in first grade, I slept through two grades before anyone caught it. My GP has been playing with my Synthriod and I was starting to have a racing pulse, and anxiety attacks, so she lowered it again. I have a TERRIBLE time trying to loose weight,I need to lose about thirty pounds but that will not happen if I can’t exercise…you know about that, anyway I have chemical sensitivities and can not get near pools. I did not know you can have tendinitis problems with RA I thought it was just my Fibromyalia, and what about those lymph nodes sometimes? Is that something related too? I have been a prisoner in my home for so many years and some Dr’s. just don’t volunteer any info, besides “take this med and this med and this shot, etc.” This site has really opened my eyes. Thanks Kelly!
Lymph nodes can swell & I’ve seen several patients say so… but always have them checked if they don’t resolve quickly. I read somewhere about how it is a common thing to have an autoimmune thyroid disease and RA together. Not always, but more likely.
Yes, absolutely you can have tendinitis problems with RA. This is what destroyed my musical career. Usually tendinitis will go away with PT and anti-inflammatories and rest, but it persisted until I had to make a choice, quit school or choose another major. I had PT, steroid shots, and lots of etc, but it didn’t go away for about 2 years. Wasn’t on any aggressive RA treatment at the time, though.
I am so blessed to have a caring husband. Our family reunion is coming up in a few weeks, It will be interesting to see how the family handles it. And– up until the recently the hotel only had stairs–
When I was working, my co workers did not get it at all… especially when I took the elevator (which was a little out of the way)– and they all took the stairs…
Surrounding myself with positive attitude RA people seems to help—
Kim
Yes, it was co-workers that I mostly had in mind too Kim. We are a very positive group – we have to develop that with a disease that is progressive and brings only bad news our way – we have to become positive propaganda machines for ourselves. ♥
When I was working, it was weird. Most of my peers understood that I had an actual disability, and they loved me, especially when I was their teamleader. But I had problems with a boss. She wanted “face time,” and it didn’t matter that we had systems in place to measure people’s production, and that I was always ALWAYS the top performer, she plugged away at me until I finally left. I should have sued. If I had had the energy, I would have, and the HR person even told me that she was harassing me. After that, I just did contract work that I could do from home until that industry kind of dried up because of the tax/India thing.
A couple thoughts on this… First, Kelly, thanks for saying this so bluntly. It’s needed. As an RA patient who looks more like the ones in the commercials, I know it’s hard even for me to always remember the limitations of other RA-warriors. I have “bad” days and certainly the diagnosis period was bad, so I *know* what it can be like–the pain, the weakness, the immobility, the inability to do something so seemingly simple–but when you don’t live with severe symptoms day in & day out, and it’s not an ingrained habit to have to do things a certain way or to avoid certain activities, it becomes easy to forget how “hard” those things can be. So, I think the blunt reminders of limitations to those you feel comfortable being that forward with are important. And if I forget how hard certain tasks can be, I’m sure those without RA do, too…especially if they don’t even share a home with an RA patient. So, cut slack where you can and continue to EDUCATE. Being that I still function very well most days, I think parts of my list will look different from many, but here it goes:
1. I have an AUTO-IMMUNE disease. Joint pain is a symptom. At this point, I am unwilling to try any “cures” or “all natural” treatments that do not have scientific evidence for helping RA. FYI. Please don’t test me in this. I don’t want to argue.
2. Just because I went on a backpacking trip this summer doesn’t mean I feel great every day. All I can say is thank God for prednisone and praise Him that timing worked out okay. I know my life usually looks normal from the outside, but I promise it’s not. If you pay close attention, you might start to notice. You can start by watching me try to use the pepper grinder at work!
3. I don’t mind talking about my RA, but it’d prefer if the discussion didn’t start with someone pointing at the giant nodule on my foot saying, “OH MY GOSH, what is THAT?!” Yes, I’m still a little self-conscious.
4. Being young with RA has some extra challenges. It can put a major wrench in family planning and add a lot of extra stress to deciding if/when to have children. I’d LOVE to have kids. I just hope my body agrees with the decision. The thought of having kids in the semi-near future has also kept me off methotrexate the past few years, which may be beneficial for me to take, but can cause birth defects.
5. I’m not likely to get better. I’m likely to get worse. I’m not being a Debbie Downer, just preparing you (and myself) for reality. I don’t want sympathy (well, maybe from my husband!); I just want understanding. I try my best to never give up hope and never give up on my faith — and I know that if my RA does get worse, it’s because God has a way to turn something good out of it.
Dana, that really helped me. We’ve talked several times and Tweeted tons – but that helped me to know more about you and gives me ways to pray for you. I’m so glad you participated – on a personal level.
Otherwise, as I’ve said before… It is so important that we hear from the whole range of RA patients so that we can have a clearer picture of the range of this disease and the ways it can change over time. Thank you.
Thank you, Kelly! Sometimes it’s hard for me to share when I know so many of you are at such a worse spot than I am– but I really appreciate the encouragement, acceptance and support you always provide to EVERYONE 🙂
I absolutely love Trills post. It is fantastic.
Fortunately I can still work. Although many days I am dragging myself home and wonder how long I will be able to continue. Unfortunately my husband has decided I am to much to handle and has decided to he doesn’t want anything to do with it. The “in sickness” wasn’t something he was planning for or wanted any part of. Fortunately I have sons who understand my limitations and are very helpful. They seem to “get it” when others do not. I don’t even talk about my disease any more. People for the most part do not understand and some do not even want to understand. My faith family is my other support system although at times some do not totally understand all that I live through with RA, and I often do not even explain things to them as it is just too tiring to go through the whole explanation time and time again. I am thankful, so thankful for my RA community. I find strength and support there whenever I need it.
You know, as I read this, one of the commonalities I see is strength. We are the ones that continue to try, making sure not to be seen as the “weakest link” so to speak, even in the face of adversity. Now granted, this can be a double-sided sword & I think that is the quandary. Do we remain stoic & strong only to have the moments where we don’t live up to someone’s expectation, like that backpack trip last summer but now we can’t carry the grocery bag in; Or do we give up everything because we we don’t have that support without looking like we are disabled. I hope this isn’t to makes sense & not to rambling. I’m proud of who I have become as a person & I’m proud of this community I am blessed to be part of. Thank you Kelly for all you do because it is thru here that I can see I’m not just being bullheaded lol!
RA sucks, pardon my french. It not only debilitates those of us who are unlucky enough to have it, but it also has the ability to confuse those around us. NO ONE, and I mean NO ONE in my family or immediate circle of friends gets it. Just because I can go for a hike at a nearby nature preserve one week does not mean I am cured! The next week I might not even have the strength to walk up and down my stairs. I do not actively “complain” so others think that silence equals remission. I just got tired of hearing myself ohh and ouch and ahh over every movement. Even my dear sweet husband, who is a nurse like myself, looks at me like “you’ve been home all day? What did you do? Why dont you just take some meds” Really? I survived the day with 2 young and needy kids! I am one of those lucky 20% to whom treatment isnt successful. I had some relief on Remicade and then Orencia…before becoming allergic to them. So current meds arent an option for me. Even my doc shakes his head and just looks at me with a puzzled face.
I guess my long ranting post comes down to this….if those closest to me cant understand it, how can I expect a total stranger to? How can I tell my sons school that I cannot volunteer because I have RA? How can I tell the neighbor who was walking his dog in front of my house that I cant come to get my runaway dog who is bothering him any faster because I have RA? How can I tell the clerk at the local store that I cant carry the bottled water because I have RA? They just look at me….and usually utter something like “Yeah, my grandmother has arthritis too….” Or, “youre too young to have arthritis!” Thanks. That helps, really. No one gets it, unless they have it too….
You are so funny: one of the smartest, strongest e-patients I know, and yet still amazed at how the world actually is. 🙂
You do a magnificent job of explaining, teaching us about your condition. You document fabulously how the world’s view of your disease is off base. But you’re still amazed when people don’t know that when they first meet you! 🙂
BUT, I know you’re new to going out into the world and teaching this. So I haz a suggestion: develop a simple page – or modify your About page – so you have a link you can easily send people when they begin to do business with you. http://www.RAWarrior.com/YouShouldKnow, or some such. It should explain, in a few short bullets (you’re good at that), that your condition makes it hard to x y z, etc, and link to your RA101 page, etc, and therefore you request:
– bullet
– bullet
– bullet
Then you’ll be seen as the inspiring people you are – and you’ll be teaching the next e-patient, too. A leader of leaders. Which you are. Woot!
Ma’am, may I humbly point out that optimism is about the future. I am too. And, in my training at changing the world, I was taught that true power comes from having a firm grip on both the vision AND current reality.
The man from whom I learned it (gack, 30 years ago??) was Robert Fritz. He called it structural tension, and he likened it to the energy stored in a rubber band when you stretch it between two hands – one representing today and one representing your vision. If you only have a grip on one hand, it has no power; hold them both firmly and you can get somewhere.
Thanks Tammy. I haven’t had a response from this treatment or any other yet – if I do, it will be very big news for me and I’ll post it here in capital letters. But the good news is that I did okay with the IV – no side effects to report yet from it. Thanks so much for asking!
No Problem Kelly, I have been looking for your response to the new meds. I also am one of those that the Medication do not work for me I ve been through them all with no relief. I love your site it gives me hope when Im really having a bad day I always go to your site and it helps. Thanks for all that you do. Tammy
I’m so sorry, Tammy. I *know* what that means, and we just tend to go on silently & complain very little so everyone assumes we r doing better. I’m sorry to hear it. Let’s hope one of these new ones coming has got our number on it!!!
Several tears ago, (when I was much healthier and physically active)I married a younger woman. I coached basketball and football, exercised religiously and was constantly on the go.
Slowly I started having constant pain in my hands and feet. It progressed to my knees, hips, neck, and shoulders. I fatigued quickly so I stopped my normal exercise routine. I stopped most of the extra curricular outings which used to occupy our evenings and weekends. Life turned into a routine of resting up just to make it to work and then come home and collapse. I stayed exhausted but I hurt to bad to lay to long in the bed. I started sleeping in another bedroom because I needed to be able to rest whenever my body needed it (day or night) instead of on a strict 10 p.m. to 6 a.m. schedule. By Sunday, I started to get some energy back but knew I shouldn’t go out or I wouldn’t have the strength to last the whole work week. Unfortunely, I was laid off this year due to the economic downturn so working a long work week is no longer an issue.
I went to the doctor, repeatedly, seeking a cause for everything but it wasn’t until “I” requested a test for RA that the doctor ordered the blood work. He began to act like I was a nut and said that he didn’t find anything wrong with me. There is no visible swelling, no redness, and the x-rays looked “really good”, BUT when the results were positive, the doctor suddenly showed more concern and sent me to “MY Rheumy” (A retired Air Force Doctor). I couldn’t have been placed in any better hands. He suffers from Psoriatic Arthritis and takes many of the same drugs he prescribes to his patients. He answered many of the questions that I had but there is STILL ONE that no one has addressed to my satisfaction:
Am I the only one who has trouble now with intimacy?
When my hands hurt I don’t want to hold hands. (Truth be told, when my feet hurt I can’t stand the covers to even be touching them) When I finally get into a comfortable position after struggling for many hours to find one, I don’t feel like snuggling, rubbing someones back, or have anyone laying in my arms. My libido has dropped to zero. Is it due to the RA, the medicines, or depression? How do you explain to the person that you love that you really do find them appealing but you just hurt too bad and feel too tired to be romantic.
What do you say when they ask for another child but you know that you will have to come off the methotrexate for 6 months or a year just to try. I shudder at the thought of going off my meds! They have reduced my pain and stiffness by half making life liveable. To me it would be like hitting me in every joint with a hammer while asking me to be tender and romantic. I love my wife and child but it kills me that I cannot be the husband and father that they need and deserve. What do you do when the “for better or worse” becomes “the worst”?
What do you say that makes them understand that you are the same person on the inside that they fell in love with but that your body has betrayed you.
What do you say … ?
My wife has non-RA bone pain problems similar to yours, e.g. sometimes she can’t even stand the pressure of sheets on her feet. So I know what you mean.
I have heard the same from so many RA patients – there is a way that we rig the sheet over the footboard to avoid anything touching the feet – maybe that would help when she’s having bad foot pain. Tell her I always say that the only good shoe is one that does not tough my feet. 😉
Gunner, it hurts my heart to see your post. I’m female, and when first diagnosed, was on the last leg of a marriage, so intimacy was kind of gone anyway. I’ve had relationships through the years, and have even had one guy say that this was in my head. We broke up 2 days after that. My current husband is my very best friend, and he understands the disease as best he can, and I never feel pressured. I just make sure that when I am having a good day, or a good moment, that I give him kisses and snuggles, and it’s cool with him. He is 15 yrs my senior, though, so I think that makes a big difference.
I do know what it feels like for self-esteem to drop drastically due to not being able to do “normal” things, though, and I do know what it’s like to have 0 libido.
I hope your wife understands the disease, and I also hope that you are able to eventually get the ‘magical’ treatment or cocktail that will help you with this.
But I think your answer is in your question. Let her read what you wrote. That’s what you tell her.
Gunner – that is a painful, and familiar story! I am on Enbrel now, which is working, but spent the prior year in agony. My husband did not understand RA, and would complain about my lack of …umm, participation, shall we say. He also wanted back rubs and scratches, despite knowing that I was in severe pain – I remember trying to acquiesce while tears of pain were streaming down my face. He would get frustrated when I said “I just can’t, I hurt too much”. It is terrible when our loved ones don’t comprehend the disease – I think the best thing would be to educate them. Once they are fully informed (this site can help with that), if they still lack compassion and place outrageous demands on us, then it does call into question the “in sickeness…” part of our vows. We might learn through lack of success in educating that we may be married to a narcissist, as empathy is not a strong point with those folks, and they may not ever be able to develop true love and compassion. Hopefully, this is not the case with you, and your significant other really just needs some education in order to develop clear understanding of your limitations. Best of luck to you.
Gunner, first off no, you are NOT the only one whose RA makes intimacy challenging on a good day and damn near impossible on a bad one. I am fortunate to have a boyfriend who is very understanding, but we both still get frustrated at times, which I’m sure you know just adds to the difficulty. One thing that we do that (for us) helps the most is to have very frank discussions about the things that we each need the most and then we make a game out of finding new ways to make those things possible. The talk and the research (or idea generation) happen at specified times OUTSIDE of when we are trying to be intimate. This helps us both stay calm and not end up arguing or playing the blame game out of frustration.
I find that the talks themselves are acts of intimacy and give us both opportunities to find out what the other is really missing, plus, it can be great fun to try out the new ideas, too!
There are some very helpful websites out there specifically to help people with ‘disabilities’ enjoy intimacy, try googling it and /or when I am next at my computer I will add some to this post (on my Nook atm).
However you go about it, being honest and willing to talk about these things is the key, imho.
Best of luck and if you would like more specific ideas, feel free to email me. I didn’t think it appropriate to be overly frank here. 😉
GUnner, I can relate to everything you said about intimacy. I want to hold my husbands hand, with fingers interlaced so badly. Or hug strongly and spontainiously. I hate to have to give a rain check because I hurt to much or the fatigue has killed any chance of making love to the man I love so deeply. THere have been times when just lying in bed and spooning or cuddling or what ever you call it that I have silently stayed in that position in pain because I didn’t want to hurt his feelings or make him feel rejected. My husband is great about all this, but he deserves better. He’s been getting better about asking if he’s hurting me or if I want him to leave me alone. I tell him I never want him to leave me alone. He wants to help me by offering me a massage for my shoulders or feet and I have to tell him no because I couldn’t handle the pain of it. SO! on the rare days where for some reason I have more energy/less pain etc. we make up for lost time! Not an easy task with 4 kids too but where there’s a will there is a way! I love my husband so much, I agree with the others, gentle frank conversations. So your mate knows you still love them and need them. And to please don’t feel rejected, it’s just about being patient.
Gunner…I agree that reading your post was heart breaking…You have been given some great advice/feedback already…The only thing I wanted to add is it sounds like your disease is not as controlled as maybe it could be by adding or changing medications…Have you tried a Biologic drug like Remicade or Humira yet? They can make all the difference in the world for some people in how you feel and how the disease effects your everyday life…If your disease could be better controlled by new or different medications you may feel more like being intimate at least some of the time…Also I don’t think there are the same warnings about birth defects with some of the newer Biologic drugs so you might be able to go off MTX for awhile when you are taking a different medication that works well and at least try to have another child if that is what you want to do…All I am trying to say is that there are a lot of options for people with this disease these days and if one is not good enough move on to another one that might bring you more relief and better control over your disease…You still have a huge chance to feel better if you talk to your doctor (tell him about your intimacy issues) and are willing to try new/different medications…This may not be the BEST you could possibly feel…Good luck to you and keep trying…
Jewell
Hi everyone…I am a 60 year old female who 6 years ago was diagnosed with RA.Was put on leflunomide and metotrexate which have now quit working. Rheumy did an MRI and found fluid on my hips, hence the horrible pain in hips radiating into the groin area. Enbrel was mentioned but I have heard soooo many things about risk and side effects of this drug. Also everyone in my immediate family has passed away from some form of cancer..my mom, my dad, and both my sisters. I’m sure you can understand my fear of doing anything that would make my risk of cancer greater than it already is.Lymphoma is high on the risk list….and my gut keeps telling me to steer clear of Enbrel. Any suggestions..or comments!?? Thanks..Robin
Hi Robin,
I’m sorry to hear about so much loss. The lymphoma question is important because many don’t know that RA itself has been shown to double the risk of lymphoma. Back when the early enbrel trials were done, the patients were not even checked for lymphoma prior to the trials because RA has been studied so little and so little is known, that the lymphoma risk had not even been acknowledged. So there have been some recent studies showing that Biologics may not increase cancer risk. It’s also important to know that even with the increased risk from RA, the lymphoma risk is still small in comparison to many other things.
Also, there are 9 biologic drugs approved for RA in the US anyway – and so you would not need to use enbrel if you’d rather not – – each of them are different in formula or mechanism or both. And there are other dmards that could be added to your combination instead of the biologics.
I’m looking forward to a study coming out at next month’s ACR on the lymphoma risk with anti-tnf therapies (like enbrel) & I’ll report on that. I recommend you read through the posts here about Biologics & the comments pages to help you decide. Just click on the Tags List and click on Biologics. Here is one from the list: http://www.rawarrior.com/do-rheumatoid-arthritis-drugs-cause-cancer/
I think the hardest thing I had to endure lately was being on a VERY long series of job interviews that involved walking up stairs and across a college campus. I begged off the stairs, knowing that my disability would rear its head the second I started going up.
It was awful: Disclose that I have a disabling chronic disease as part of the interview OR risk appearing like a fat, lazy person who doesn’t do stairs. I opted for the second. Didn’t get the job, either.
I’m still not sure how I could have avoided it short of disclosing that I have a disability, which is a death sentence in this job market.
My mother’s family has RA everywhere. I can’t say that I am thrilled that I have been diagnosed at 35 but I look at my great-aunt who at 80 with horrible RA was still going on cruises and I feel, not hope exactly, but not alone.
A cousin, a 2nd cousin my mother a great aunt… someone in our family has has had every symptom and tried every treatment so thatwhen I talk to my doctor and he wants to try it on me I say “Oh yeah ____ tried that and it worked really well.”
My Dr is lovely and says that what he likes about my family history is that it means I am not afraid of RA because I have seen people living with it and having flares and going into remission.
Today though my feet hurt and my fingers are aching and I feel sick from the meds. I kind of would’ve liked to inherit a great singing voice instead…..
I have a hard time.. feeling like I belong anywhere right now. i was diagnosed a few weeks ago, and all I know is my wrist hurt today but not until mid day, and the day before it was my fingers, all day, and the day before my knees and shoulders. I know today i was ok most of the day… I feel so LOST in this, because somedays I’m convinced it’s better until suddenly it’s not and then I go through this grieving process because I was convinced it was gone, and then it’s back. Sorry for the complaining, i just.. how do I tell someone that my relationship to this disease is ‘complicated?’
What you’re describing is common and I’ve heard it many times. We don’t see what is considered “typical RA” very often. Especially early on, it can seem to “move around” like you described.
I think it is part of the struggle because of the invisible nature of the disease. I can tell you from my own example, that even though it affects me 24/7/365, if I even have a day when the pain drops below a 5 or I don’t look swollen, I wonder if I’m better too. It only lasts minutes and a disability or pain or something else rears its head.
Forget explaining it to people…I can’t get my own freaking Rheumatologist to hear me. After Methotrexate quadrupled my liver enzymes in 2 weeks, he put me on Arava. I noticed the 1st month that I was extremely fatigued, unable to concentrate, unable to remember anything….just not me. But when the time came for my 1st follow up at 6 weeks, I couldn’t remember to tell him how I was feeling. I was mad at myself for failing to communicate at this appt. So, I kept a log for the next 5 months. The list of new issues was very long…I now hurt worse and all over, for one. —At my next appt I give him my type up list PLUS questions about exercises I could do, etc. He glanced at my list, said it sounded more like Fibro than RA, “…but you havve a positive RA factor so it’s RA…”, then he prescribes Humira, but tells me to keep taking Arava for another month so that I “can see just how good you really felt while taking it…” HUH??? He literally told me I couldn’t assess my own pain!!! I stopped taking everything and for the most part, I feel better. I still have RA and some days are worse than others, but I have my BRAIN back. I can focus on more than 1 task a day. — But the frustration of not having a dr I can trust is worse than dealing with the average uniformed, misinformed, well-meaning person. They are easier to forgive than the $150 an hr Specialist who needs to pull his head out of his rear orifice.
I read about RAWARRIOR while waiting to see the doctor today. I too have it everywhere but my feet/ankles. I feel fortunate. It is a horrible disease. I was diagnosed with it about 6 years ago but I have had the pain for over 10 years. The doctors just didn’t believe I had it for some reason. Anyone else run into that situation?
I’m in England and was diagnosed in 1995 at the age of 31 after at least 4 years of problems that were not recognised as RA, yet were ‘typical’ symptoms. SO FRUSTRATING! I could barely walk 100m and the first specialist I saw took one look at my tearful face and my ‘curled into claws’ hands and said “there’s nothing wrong with you… let’s straighten these out” – grabbed my agonising hand and pulled the fingers out straight! I let out such a scream that my husband came running in from the waiting room to see what was happening!
Fortunately (!?) that was the start of being taken seriously and I spent 3 weeks in hospital having intensive therapies to help me regain mobility in my hands and feet. Eventually a blood test showed RA and medication began that gave me back my life. It’s been 17 years now… I’m lucky I am not as badly affected as a lot of people whose blogs I’ve read on here. I volunteer for a Search & Rescue team with my dog and walk miles MOST weeks. My husband and 2 grown (but still at home) sons are helpful and understanding when I have a bad day, but this site and all contributions have made me realise that I am not alone in not always feeling ‘grateful’… I had artificial MCP joints in my right hand 18 months ago as the ulnar deviation had become so bad and painful… it has been amazingly successful in my opinion but it is only a matter of time before the other hand will need attention… and the overwhelming tiredness that hits on a bad day (let alone the pain in other parts) gets me down. I don’t need other people thinking I’m lazy…I’m good enough at that myself…but sometimes there’s nothing else for it but to give in and go with it, hoping things will be better the next day.
I hope you find someone to support you… we all need help!
I sometimes wish I hadn’t told anyone that I have RA. I feel like friends and family and even my husband of 27 years just think I have arthritis and use Ra as a crutch or something. I try to walk and exercise every day, but on days when my ankles feel like they are going to explode,and my fingers won’t bend,doing just about anything is impossible. Then there are the days when I do pretty well and cook, clean, walk etc..though noone knows things like how the menu changed,during prep, say if I was unable to use a knife, opena jar etc…I feel like my husband thinks “wow she’s healed, why was she so helpless las week?” then I’m expected to be perfect the next day. Friends seem to think now that I’m on meds I should just be the old me and be superwoman. Ther is just no wayto explain this disease to people that do not have it. It should not be called arthritis at all, because we all know “take some tylenol and get moving cures arthritis”
I have Adult onset still’s disease (in remission) and a really nasty case of osteoarthritis. my knees are bent 40 degrees. I can’t straighten my back when walking because of extensive oa of the spine. people don’t ask what I have. But if I am going in a door, people will come and open a door for me.
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I keep having trouble making people understand that RA doesn’t affect me the same on any two days. Today it is my hands, and yesterday it was my feet. Tomorrow it might be my knees and hips or all of the above. I’m tired of my dr telling me that it can’t possibly be affecting my spine, neck or jaw when I am showing him that I am in pain in these places as well as the usual ones. I lost my job because of RA, I’m having to fight for disability because of RA. I don’t see any end in sight to problems because of RA. I would love to give my RA to the people that have made my life even harder than it is. Just for a month or two. I keep seeing all these commercials with happy active people that are taking one RA drug or another, it makes it look like we can all just take this med and get right on down the road. Some of us can, and I am really happy for them. But for some of us the meds work sketchy at best and we aren’t the happy active people in the commercials who have fought back and overcome RA. All the pills in the world have not helped my attitude towards life with RA. Now that I am unemployed there are not pills at all, and no one is going to help because I can’t show that I didn’t make little enough money before I was fired.
Ok sorry for the rant, but I had to get it out of my system.
Go ahead and “rant” a little if it will help someone understand this! It’s not our fault if they have not created a med that worked for our RA yet. I’m so sorry to hear about the firing. 🙁
A few months back I tried to explain it to my 22 year old step son…who was whining because his dad lets me sit on the couch but not him…Remember what it feels like when you hit your thumb with a hammer,then multiply that by every joint in your body including your jaw, neck and spine. That is how my joints feel when I am not moving them, when I am moving them it is like hitting them all over again. He did not understand. He recently was in an ATV accident and has pins holding his thumb together and still does not understand how I feel (He thinks I am supposed to wait on him hand and foot now because his thumb does not work)The joints on my hand show the damage from severe RA that did not get treated soon enough but he thinks one sore thumb is crippling. People just do not get it, even when they can see the joint destruction they still don’t get it…I think they just do not want to get it
I’ve been skimming through your website for a few weeks now. I’m 24 and got diagnosed with RA about three years ago. I’ll admit I haven’t read everything on here but when I just read that you are among the few who don’t respond to treatment my jaw about hit the floor. I had insurance problems in the past so I went through a six month period without medication I don’t know that I’d be strong enough to make through every day like that for years! The fact that you live with that kind of pain and still live is amazing.
Dear Melissa,
I’m sorry if I confused you that there are few of us like me. At least 1/3 of RA patients don’t respond to current treatments. Only 20% respond with an improvement that is about 70% improvement. Depending on how severe their disease is, that can be relative… Anyway, about 44% of patients get about 50% better with Biologics & mtx in average clinical trials. Unfortunately, even they need research to come up with better answers, because that improvement is almost always temporary – can last from 3 months to 10 years, but then most need to find a new treatment. Here is one of the articles about it: http://www.rawarrior.com/new-way-to-report-response-in-rheumatoid-arthritis-clinical-trials/
It is very hard to live with the combination of constant inflammation/flare, all joints affected, and being a non-responder. It is very hard every day. But we just do it – I think as far as I can see, at least 20% of RA pateints are in this boat with me. Most of us deal with it by using long-term prednisoone or high dose nsaids or both and pain medications. The disabitly is the biggest issue, but it’s also hard that most people don’t understand, even some others with RA. I was off treatment for a few months last year also, and there was more swelling, but the rest was about the same.
For me the difference between having the medicine and not having it was extreme. I was lucky that I responded to the treatment they put me on with in weeks. I thank God every day for that. I know those six months without treatment I was in tears just trying to make it to the bathroom. The doctors I’ve been to give me treatments but as for info about the disease I got more information just googling RA then I did from my doctors. I had no idea what to expect when I stopped treatment. And even though now that I’m being treated I have a lot of days I feel completely normal I still don’t really know what to expect in the future. I hear all this stuff about remission and flare ups but its all really confusing! The hardest thing for me right now is I also have Thyroid disease, my main symptom for both is fatigue I have days at a time where I just don’t have the energy to get up and do anything and when I try to tell my doctor this I’m told there’s not really anything they can do about it when all my levels are testing normal. It is so frustrating especially trying to explain to friends that yes I’d love to go out and do stuff I just don’t have the energy to do it!
I do cry many days. But I hold onto hope too since there are so many like you who tell me there can be hope – between science and faith – there’s hope that it can get better.
The fatigue could be from either one, of course. But it’s a typical thyroid symptom & patients usually can tell when it’s not “right.” Sometimes when the TSH is in normal range, the T3 is still low. I had the same problem the year I had my last child and my RA went full-blown – the thyroid went nutty. Even though I’ve had thyroid disease for 30 yrs, it was much worse than before. Anyway, I found a good endo doc who explained about the T3 and convinced me to try a small dose – I cut the lowest dose pills in half because I was so afraid of becoming hyperthyroid again (tachycardia, lack of sleep, severe weightloss, headache). The doc said sometimes, the body doesn’t efficiently take the artificial T4 and convert efficiently to the active form T-3.. For me and a couple of people I’ve talked to, that was the answer. I’m just a fellow patient – but if your meds don’t help it, maybe you can ask a doctor if this might work.
Melissa,
Wow, I think we might be about the same person! I am 24 and have been having symptoms for 3 years. I haven’t been officially diagnosed yet because my dr (who is my mom and 2 sister’s doctor as well – yes, all four of us have RA) thought it would be a good idea to wait til I was on more permanent insurance. I’ll be going back soon for diagnosis and treatment though, cause it’s getting to be more than I can handle. But I also have thyroid problems – hypothryroidism. So I completely understand what you, and everyone else of course, are experiencing with the fatigue. I haven’t ever not been tired in over 4 years. For me, the fatigue is by far the worst symptom of RA and Hypothyroidism, though the pain is starting to catch up. And like you said, I have a hard time wrapping my mind around the fact that this will never go away. I look at my oldest sister, who is 10 years older than me – I got symptoms at least 2 years younger than she did. She is so sick, it breaks my heart for her and scares me to death to think I could get as bad as she is. Hang in there, Melissa. You are not alone!
Yes, it’s so discouraging. Even my family doesn’t understand, and I’m partly to blame for my mom’s depression, because I’m sure she had it, and I being of sound body at that time, didn’t understand her as well. If I believed in karma, I would believe that it was some payback for that. However, it has made me more sensitive to my GI patients who have autoimmune disease, and more willing to send them off to rheumatology after a consult, when I suspect sero-negative autoimmune disease. RA prevents me from being active, I see stairs I can’t climb, and used to run up.
Imagine as well, the frustration of a friend who is Deaf, unable to speak because of her RA…
Roselynn,
I just had to reply. It sounds as if you’re taking on so much guilt that perhaps you shouldn’t. Due to your “I’m sure she had it” comment about your mother, it doesn’t sound as if she had an official diagnosis or one you were told. How could you have understood? Even if she had a diagnosis, mothers often keep the worst of their symptoms of RA from their daughters and sons, as they also sometimes keep the depth of depression from them. Depending on your age at the time, daughters and sons can also be obvlious and a bit self-centered. I think of this as nature’s built-in drive that compels them to separate from their mothers and go out into the world and allows moms to let them and be happy! If your mom had RA and now you do, too, this isn’t kharma: this is inheritance, predisposition.
I’m still lucky enough with my RA treatments that I can work 40 hours weeks. It’s difficult– but I can do it. Recently, I was invited to attend a staff meeting. When I arrived at the meeting place, the table was at cocktail height and the chairs impossibly high for me to climb up on. I just remember starring at the chairs and wondering “How am I going to handle this?”. My rest of the staff and the organizers all knew I have RA. But it never occurred to any of them that I couldn’t climb up onto a chair. I ended up looking like a fool. I grabbed a normal chair and sat at the table with my chin at table height. All the people in my meeting thought it was a hoot. I think I felt humiliated and concerned. If sitting on a chair is a problem today, how long before I am no longer able to work?
I know just what you mean with the bar stools. Good illustration for the way it never occured to them.
Babs, I’m sure it’s very hard for you, but I know the longer you can work, the better. It is so hard to give things up that you used to do or that help identify you or provide for your family. Hopefully, you can work a few more years, or maybe fewer hours will be an answer one day. And hopefully there will be ways to make it easier for you at work.
It is amazing to hear from other RA suffer-gists the same things I have told my family for years, but they got tired of hearing it about ten years ago. Now, I ask if I can rant and vent…not that I should have to ask but it seems to help around here.I’m going to National Jewish Health in Denver next Monday, as my doc told me that this is the best I may ever feel.Now, I’m not doing too badly, not great but living(you know) I am worried they won’t find “anything” and I won’t get the relief I need. I don’t live in Colorado and it will mean travel,lodging and meals plus the Dr. visit so I’m a little worried that it may be a waste of time?,So many shots and meds have not worked on me and my insurance is getting snotty because an Enbrel shot every five days would work better than one every week, and they don’t want to pay for it. But they would pay $100.00 toward Orencia IV that is close to $3,000.00…how nice! This is BCBS insurance. Maybe I could qualify for a program or some help? It is nice to be able to vent here, thanks!
Hi Sarah, love the suffer-gists word.
If you have insurance & it doesn’t cover enough, each pharm company has a program to help with the payments thru a Patient Assistance program. I’ve found them easily by searching on Google. Anyway, good luck with the trip and the appointment next week!
It is constantly frustrating to live with this day in & day out. 24/7 365 with no holidays. My friends & family forget that I have the constant pain & inability to do all the things I was able to do before RA bc I would have a relatively “good” day meaning I could walk without limping or grimacing with every step or every time I would try to pick up a cup of coffee(forget handles- so not my friend!) In public, people stare if I ask someone to lift something to put in my cart so I take my daughter with me & shuffle along now. Those trips are getting shorter & shorter! I certainly miss the trips to the mall though- I always loved browsing through the shops & walking through the whole mall for the entire day, especially during the holidays. Now, online shopping is all that i can tolerate. Even that takes it toll on the hands.. speaking of which- time for a break.
Sorry for my melancholy “walk” through the life before the monster.. Thanks for being here. Pain free blessings to everyone 🙂
Hmm, a list! This has been honed just recently because of visitors in my home. My husband understands and I don’t have to deal with any of this from him, but my mother, who I have basically “hired” in the past to help me during flares still has me saying some of these things to her:
1. Yes, even though there are just 2 of us, I need a booth. I can’t sit in those hard wooden chairs, no matter how long you stare at me waiting for me to change my mind. If I try, I will leave this place with a fever and it will cause horrible pain that will last for days if not longer.
2. I am sure that picture that is on your computer behind me is AWESOME, but can you please just send it to me in an email, because turning my neck is not an option today, and I don’t see why I should wrestle myself up out of my chair in order to just stand up and turn around and look at your AWESOME picture. Really, just send it to me in email, even though we’re in the same room.
3. I would love to come sit with you in the other room, but the furniture in that room is from the 70s and I can’t sit in it without getting “stuck.”
4. To someone who has helped me because of RA flares in the past, but still doesn’t get it: pretend you have no hands. Can you think of all the things you use your hands for? No, it’s not the same thing as when you were blind because you had cataracts removed. heh.
5. Banana pudding? With all that stirring? HAHAHAH! no.
6. I can’t come to the woods with you because I can’t carry my pack, can’t walk the mile to the site, and can no longer sleep on the ground. It’s very kind of you to offer to “kidnap” me and take me out there, but it’s not the ride I need, it’s the back, hands, knees, shoulders, neck and feet that I need, sorry.
7. I’d love to make plans to do X with you on Y date, but
I don’t know if I will be completely immobile or having a decent day on that date, so I can’t invest the $ for hotel/flight right now. Maybe there will be more stability in my life at a later time.
8. Tonight is MTX night. Yes, it’s chemo, no it’s not the high dose that cancer patients take, but it is chemo. No, not many people have heard of it being used for RA, but it’s the first aggressive drug most diagnosed RA patients are prescribed. Yep, really.
9. Lord no, I don’t want to “just try” something that boosts my immune system. My immune system is evil and aggressive and I don’t want to feed it.
10. I’ve been vegan, I’ve been vegetarian, I’ve tried the mediterranean diet, the “RA diet,” the southbeach diet and several detox/fasting diets. I’m done trying new diets. I eat as healthily as I can because I don’t want to gain weight, and I want my heart to be as healthy as possible, and I do get a ton of omega-3 and nutrients in my diet and supplements. No, really, I’m not going to try your diet, I’ve got enough to worry about without going through the hell of replacing most everything in my cabinets. Again. And, no, it’s not salt that is causing my ankles to swell.
11. Thank you for hoping that I’ll get better soon. I do too. Yes, I’ll let you know if I do, because it will be a very happy day.
12. I see you are in my area. I would love to meet up with you, but I really, truly do not feel like explaining all the ins and outs of what that would entail. I am sorry, but I also do not trust that you will tell me the truth about whether or not you or someone near you recently is sick. I am sure you are more honest than the last person who came into my house with a bad cold, but I can’t risk that; it is actually dangerous.
13. Call it slacktivism if you want, but I literally cannot go occupy someplace and hold a sign up all day, or be in the sun all day, or sit or stand in unfamiliar places.
14. Yes, a 5k is out, too. (lol?)
15. Oh, I know it’s only 1 floor up, but I will be taking the elevator. My knees do not do stairs.
16. It’s great that knitting helped your grandmother with her arthritis. That’s just so awesome! But, no, I can barely even write with a pen. (some days I can’t)
17. Sure! I’ll try your friend’s Reiki Healing stuff if they will do it for me for free! Oh, you mentioned to them that I have RA and they have changed their mind? Oh well. 🙂
18. There’s a reason I have a favorite cab driver and that I won’t go anywhere unless he is on duty that day. He backs his cab up as close as he can get to my house and opens the door for me, when I get in, and when I get out. This has nothing to do with gender equality and everything to do with bad hands not being able to open car doors.
19. I am sorry I forgot your birthday/anniversary/daughter’s name/my appointment/etc. RA causes something we call “brain fog,” so I’m not all there a lot of times. No, as far as I know, there’s not “something the doctor can give me for it.”
20. Oh yes, I will be exercising as soon as I either get a pool installed in my yard, or the doc orders PT (pool therapy). Anything else is out of the question. Yes, even a walk around the block. I’ll walk with you to the fence and back if you like, but walk close to me, not only to help me balance, but so you can hear what pain sounds like.
I was trying to think of something I might have to say to gamers who want me to play with them, but, thinking about it, gamers have responded to me with more understanding than any other group has. My spot is permanently saved for me, and the main question I’m asked is, “are the meds working yet?” and I’m told that I’m missed. Maybe they are able to realize that I really want to play and the only reason I don’t is really, honestly, seriously, because I can’t. Especially right now, because the new gear for my mage will be called “Time Lord Regalia!” Want! 🙂
Fantastic!!!!!!! Thank you. 🙂
That was simply awesome! I could not have put that into better words, seriously- I’m in a brain fog!
I wish I had a cab service, that I need to add to my list!
Thank you so much :heart: & :stars:
haha, thanks, it was fun to write. some cities allow cab drivers to have their own customers who call them on their cells and don’t have to go through the cab company, but some cities do not allow it. that doesn’t mean that the cabbies won’t do it. when you find a good one, just ask for his number. 🙂 my cabbie’s name is abou (pronounced aboo), and he’s not very personable or anything. usually he is on his phone speaking very loudly in arabic. sometimes he complains (with a smile on his face) about his wife, who, after having their last child, is still having major cravings and calls him to bring her food all the time. once he even picked me up with his two other kids in the cab because he knows he can’t just send one of his buddies after me. he did that once and later that day, he called to ask me if the guy opened doors for me and stuff and when i said no, he started yelling, and then apologized to me and said he wouldn’t send anyone after me again. lol
oh yeah, and when you find a good one, tip well and call ahead of time, and you’ll always be very valued to them. gas prices are high and so are their cab leases. cab fares are expensive, yes, but they have a very high overhead. i used to drive and dispatch. 🙂
I suppose I’ve been on the lucky side of this issue in that I have finally figured out what works for me, but it took about 15 years to figure it out. I usually have a joint that is acting up visibly that helps me explain my situation. I’ve gotten to the point where I don’t even start with saying “I have RA” anymore because that invites the gratuitious “Oh I have that in my *insert joint here*” comment & blow-off. I start by saying I have an autoimmune disease that disintegrates my joints. At that point, I show them which ever joint is acting up, usually my ankle, and it gets like 3 times the size of my other one. At this point I tell them “they” call it RA or Rheumatoid Arthritis but the arthritis part of the name is really more of a side-effect then the actual disease. That usually starts the discussion about the disease and what it can do to a body. It sometimes takes more than one discussion to get them “trained” lol and truly understanding of my situation but that’s ok. I will tell people a million times if it means people are more aware, ask more questions and maybe even flips the lightbulb for someone else who may be suffering. Until this past July when I was surplussed, my job was a Sr. Customer Service Training Manager. I still worked 40+ hrs a week, traveled all over the US and had days where I was in the class training over 8hrs a day. Because of my educating my peers at work, there was greater acceptence of my bad days. If I was having a bad day, they learned to recognize it and would offer assistance. Now I have to figure out where my life path is being directed and what my next step is. I love this site because I know I’m not alone in my boat. Best wishes and hugs to all.
I am so lucky that my DH doesn’t complain when he has to help out more with my son. I am in the midst of an RA induced tendenitis flare in all of my major tendons (hip/groin area, shoulders, ankles) and moving is agony. Reading your post, I have to agree, I would have been in agony about half way up those stairs and barely able to walk after standing there very long. But I’m very blessed to have a spouse who understands.
On very rare occasions, I’ve added the Facebook discussion link here – the conversation here is amazing – Trill’s comment above is so funny & very popular with readers. But also the Facebook posts are very informative!! http://www.facebook.com/arthritiswarrior/posts/149752715121436
I’m sort of seeing a pattern here. I have had thyroid problems since I was in first grade, I slept through two grades before anyone caught it. My GP has been playing with my Synthriod and I was starting to have a racing pulse, and anxiety attacks, so she lowered it again. I have a TERRIBLE time trying to loose weight,I need to lose about thirty pounds but that will not happen if I can’t exercise…you know about that, anyway I have chemical sensitivities and can not get near pools. I did not know you can have tendinitis problems with RA I thought it was just my Fibromyalia, and what about those lymph nodes sometimes? Is that something related too? I have been a prisoner in my home for so many years and some Dr’s. just don’t volunteer any info, besides “take this med and this med and this shot, etc.” This site has really opened my eyes. Thanks Kelly!
Lymph nodes can swell & I’ve seen several patients say so… but always have them checked if they don’t resolve quickly. I read somewhere about how it is a common thing to have an autoimmune thyroid disease and RA together. Not always, but more likely.
Yes, absolutely you can have tendinitis problems with RA. This is what destroyed my musical career. Usually tendinitis will go away with PT and anti-inflammatories and rest, but it persisted until I had to make a choice, quit school or choose another major. I had PT, steroid shots, and lots of etc, but it didn’t go away for about 2 years. Wasn’t on any aggressive RA treatment at the time, though.
I am so blessed to have a caring husband. Our family reunion is coming up in a few weeks, It will be interesting to see how the family handles it. And– up until the recently the hotel only had stairs–
When I was working, my co workers did not get it at all… especially when I took the elevator (which was a little out of the way)– and they all took the stairs…
Surrounding myself with positive attitude RA people seems to help—
Kim
Yes, it was co-workers that I mostly had in mind too Kim. We are a very positive group – we have to develop that with a disease that is progressive and brings only bad news our way – we have to become positive propaganda machines for ourselves. ♥
When I was working, it was weird. Most of my peers understood that I had an actual disability, and they loved me, especially when I was their teamleader. But I had problems with a boss. She wanted “face time,” and it didn’t matter that we had systems in place to measure people’s production, and that I was always ALWAYS the top performer, she plugged away at me until I finally left. I should have sued. If I had had the energy, I would have, and the HR person even told me that she was harassing me. After that, I just did contract work that I could do from home until that industry kind of dried up because of the tax/India thing.
A couple thoughts on this… First, Kelly, thanks for saying this so bluntly. It’s needed. As an RA patient who looks more like the ones in the commercials, I know it’s hard even for me to always remember the limitations of other RA-warriors. I have “bad” days and certainly the diagnosis period was bad, so I *know* what it can be like–the pain, the weakness, the immobility, the inability to do something so seemingly simple–but when you don’t live with severe symptoms day in & day out, and it’s not an ingrained habit to have to do things a certain way or to avoid certain activities, it becomes easy to forget how “hard” those things can be. So, I think the blunt reminders of limitations to those you feel comfortable being that forward with are important. And if I forget how hard certain tasks can be, I’m sure those without RA do, too…especially if they don’t even share a home with an RA patient. So, cut slack where you can and continue to EDUCATE. Being that I still function very well most days, I think parts of my list will look different from many, but here it goes:
1. I have an AUTO-IMMUNE disease. Joint pain is a symptom. At this point, I am unwilling to try any “cures” or “all natural” treatments that do not have scientific evidence for helping RA. FYI. Please don’t test me in this. I don’t want to argue.
2. Just because I went on a backpacking trip this summer doesn’t mean I feel great every day. All I can say is thank God for prednisone and praise Him that timing worked out okay. I know my life usually looks normal from the outside, but I promise it’s not. If you pay close attention, you might start to notice. You can start by watching me try to use the pepper grinder at work!
3. I don’t mind talking about my RA, but it’d prefer if the discussion didn’t start with someone pointing at the giant nodule on my foot saying, “OH MY GOSH, what is THAT?!” Yes, I’m still a little self-conscious.
4. Being young with RA has some extra challenges. It can put a major wrench in family planning and add a lot of extra stress to deciding if/when to have children. I’d LOVE to have kids. I just hope my body agrees with the decision. The thought of having kids in the semi-near future has also kept me off methotrexate the past few years, which may be beneficial for me to take, but can cause birth defects.
5. I’m not likely to get better. I’m likely to get worse. I’m not being a Debbie Downer, just preparing you (and myself) for reality. I don’t want sympathy (well, maybe from my husband!); I just want understanding. I try my best to never give up hope and never give up on my faith — and I know that if my RA does get worse, it’s because God has a way to turn something good out of it.
Dana, that really helped me. We’ve talked several times and Tweeted tons – but that helped me to know more about you and gives me ways to pray for you. I’m so glad you participated – on a personal level.
Otherwise, as I’ve said before… It is so important that we hear from the whole range of RA patients so that we can have a clearer picture of the range of this disease and the ways it can change over time. Thank you.
Thank you, Kelly! Sometimes it’s hard for me to share when I know so many of you are at such a worse spot than I am– but I really appreciate the encouragement, acceptance and support you always provide to EVERYONE 🙂
I absolutely love Trills post. It is fantastic.
Fortunately I can still work. Although many days I am dragging myself home and wonder how long I will be able to continue. Unfortunately my husband has decided I am to much to handle and has decided to he doesn’t want anything to do with it. The “in sickness” wasn’t something he was planning for or wanted any part of. Fortunately I have sons who understand my limitations and are very helpful. They seem to “get it” when others do not. I don’t even talk about my disease any more. People for the most part do not understand and some do not even want to understand. My faith family is my other support system although at times some do not totally understand all that I live through with RA, and I often do not even explain things to them as it is just too tiring to go through the whole explanation time and time again. I am thankful, so thankful for my RA community. I find strength and support there whenever I need it.
You know, as I read this, one of the commonalities I see is strength. We are the ones that continue to try, making sure not to be seen as the “weakest link” so to speak, even in the face of adversity. Now granted, this can be a double-sided sword & I think that is the quandary. Do we remain stoic & strong only to have the moments where we don’t live up to someone’s expectation, like that backpack trip last summer but now we can’t carry the grocery bag in; Or do we give up everything because we we don’t have that support without looking like we are disabled. I hope this isn’t to makes sense & not to rambling. I’m proud of who I have become as a person & I’m proud of this community I am blessed to be part of. Thank you Kelly for all you do because it is thru here that I can see I’m not just being bullheaded lol!
RA sucks, pardon my french. It not only debilitates those of us who are unlucky enough to have it, but it also has the ability to confuse those around us. NO ONE, and I mean NO ONE in my family or immediate circle of friends gets it. Just because I can go for a hike at a nearby nature preserve one week does not mean I am cured! The next week I might not even have the strength to walk up and down my stairs. I do not actively “complain” so others think that silence equals remission. I just got tired of hearing myself ohh and ouch and ahh over every movement. Even my dear sweet husband, who is a nurse like myself, looks at me like “you’ve been home all day? What did you do? Why dont you just take some meds” Really? I survived the day with 2 young and needy kids! I am one of those lucky 20% to whom treatment isnt successful. I had some relief on Remicade and then Orencia…before becoming allergic to them. So current meds arent an option for me. Even my doc shakes his head and just looks at me with a puzzled face.
I guess my long ranting post comes down to this….if those closest to me cant understand it, how can I expect a total stranger to? How can I tell my sons school that I cannot volunteer because I have RA? How can I tell the neighbor who was walking his dog in front of my house that I cant come to get my runaway dog who is bothering him any faster because I have RA? How can I tell the clerk at the local store that I cant carry the bottled water because I have RA? They just look at me….and usually utter something like “Yeah, my grandmother has arthritis too….” Or, “youre too young to have arthritis!” Thanks. That helps, really. No one gets it, unless they have it too….
You are so funny: one of the smartest, strongest e-patients I know, and yet still amazed at how the world actually is. 🙂
You do a magnificent job of explaining, teaching us about your condition. You document fabulously how the world’s view of your disease is off base. But you’re still amazed when people don’t know that when they first meet you! 🙂
BUT, I know you’re new to going out into the world and teaching this. So I haz a suggestion: develop a simple page – or modify your About page – so you have a link you can easily send people when they begin to do business with you. http://www.RAWarrior.com/YouShouldKnow, or some such. It should explain, in a few short bullets (you’re good at that), that your condition makes it hard to x y z, etc, and link to your RA101 page, etc, and therefore you request:
– bullet
– bullet
– bullet
Then you’ll be seen as the inspiring people you are – and you’ll be teaching the next e-patient, too. A leader of leaders. Which you are. Woot!
Okay dinnertime bye.
Love it. And good advice should be followed, so I’ll work on that…
Bwhahaha: She’s “yet still amazed at how the world actually is.” She is eternally optimistic. It is kinda funny. 😉
Ma’am, may I humbly point out that optimism is about the future. I am too. And, in my training at changing the world, I was taught that true power comes from having a firm grip on both the vision AND current reality.
The man from whom I learned it (gack, 30 years ago??) was Robert Fritz. He called it structural tension, and he likened it to the energy stored in a rubber band when you stretch it between two hands – one representing today and one representing your vision. If you only have a grip on one hand, it has no power; hold them both firmly and you can get somewhere.
Hi Kelly , I was wondering how you are doing on the new treatment you are doing. I didnt see the post or maybe I missed it.
Thanks Tammy. I haven’t had a response from this treatment or any other yet – if I do, it will be very big news for me and I’ll post it here in capital letters. But the good news is that I did okay with the IV – no side effects to report yet from it. Thanks so much for asking!
No Problem Kelly, I have been looking for your response to the new meds. I also am one of those that the Medication do not work for me I ve been through them all with no relief. I love your site it gives me hope when Im really having a bad day I always go to your site and it helps. Thanks for all that you do. Tammy
I’m so sorry, Tammy. I *know* what that means, and we just tend to go on silently & complain very little so everyone assumes we r doing better. I’m sorry to hear it. Let’s hope one of these new ones coming has got our number on it!!!
Several tears ago, (when I was much healthier and physically active)I married a younger woman. I coached basketball and football, exercised religiously and was constantly on the go.
Slowly I started having constant pain in my hands and feet. It progressed to my knees, hips, neck, and shoulders. I fatigued quickly so I stopped my normal exercise routine. I stopped most of the extra curricular outings which used to occupy our evenings and weekends. Life turned into a routine of resting up just to make it to work and then come home and collapse. I stayed exhausted but I hurt to bad to lay to long in the bed. I started sleeping in another bedroom because I needed to be able to rest whenever my body needed it (day or night) instead of on a strict 10 p.m. to 6 a.m. schedule. By Sunday, I started to get some energy back but knew I shouldn’t go out or I wouldn’t have the strength to last the whole work week. Unfortunely, I was laid off this year due to the economic downturn so working a long work week is no longer an issue.
I went to the doctor, repeatedly, seeking a cause for everything but it wasn’t until “I” requested a test for RA that the doctor ordered the blood work. He began to act like I was a nut and said that he didn’t find anything wrong with me. There is no visible swelling, no redness, and the x-rays looked “really good”, BUT when the results were positive, the doctor suddenly showed more concern and sent me to “MY Rheumy” (A retired Air Force Doctor). I couldn’t have been placed in any better hands. He suffers from Psoriatic Arthritis and takes many of the same drugs he prescribes to his patients. He answered many of the questions that I had but there is STILL ONE that no one has addressed to my satisfaction:
Am I the only one who has trouble now with intimacy?
When my hands hurt I don’t want to hold hands. (Truth be told, when my feet hurt I can’t stand the covers to even be touching them) When I finally get into a comfortable position after struggling for many hours to find one, I don’t feel like snuggling, rubbing someones back, or have anyone laying in my arms. My libido has dropped to zero. Is it due to the RA, the medicines, or depression? How do you explain to the person that you love that you really do find them appealing but you just hurt too bad and feel too tired to be romantic.
What do you say when they ask for another child but you know that you will have to come off the methotrexate for 6 months or a year just to try. I shudder at the thought of going off my meds! They have reduced my pain and stiffness by half making life liveable. To me it would be like hitting me in every joint with a hammer while asking me to be tender and romantic. I love my wife and child but it kills me that I cannot be the husband and father that they need and deserve. What do you do when the “for better or worse” becomes “the worst”?
What do you say that makes them understand that you are the same person on the inside that they fell in love with but that your body has betrayed you.
What do you say … ?
Gunner, that’s so poignant. Ouch – in many ways.
My wife has non-RA bone pain problems similar to yours, e.g. sometimes she can’t even stand the pressure of sheets on her feet. So I know what you mean.
I have heard the same from so many RA patients – there is a way that we rig the sheet over the footboard to avoid anything touching the feet – maybe that would help when she’s having bad foot pain. Tell her I always say that the only good shoe is one that does not tough my feet. 😉
Gunner, it hurts my heart to see your post. I’m female, and when first diagnosed, was on the last leg of a marriage, so intimacy was kind of gone anyway. I’ve had relationships through the years, and have even had one guy say that this was in my head. We broke up 2 days after that. My current husband is my very best friend, and he understands the disease as best he can, and I never feel pressured. I just make sure that when I am having a good day, or a good moment, that I give him kisses and snuggles, and it’s cool with him. He is 15 yrs my senior, though, so I think that makes a big difference.
I do know what it feels like for self-esteem to drop drastically due to not being able to do “normal” things, though, and I do know what it’s like to have 0 libido.
I hope your wife understands the disease, and I also hope that you are able to eventually get the ‘magical’ treatment or cocktail that will help you with this.
But I think your answer is in your question. Let her read what you wrote. That’s what you tell her.
I wish you lots of luck and love.
Gunner – that is a painful, and familiar story! I am on Enbrel now, which is working, but spent the prior year in agony. My husband did not understand RA, and would complain about my lack of …umm, participation, shall we say. He also wanted back rubs and scratches, despite knowing that I was in severe pain – I remember trying to acquiesce while tears of pain were streaming down my face. He would get frustrated when I said “I just can’t, I hurt too much”. It is terrible when our loved ones don’t comprehend the disease – I think the best thing would be to educate them. Once they are fully informed (this site can help with that), if they still lack compassion and place outrageous demands on us, then it does call into question the “in sickeness…” part of our vows. We might learn through lack of success in educating that we may be married to a narcissist, as empathy is not a strong point with those folks, and they may not ever be able to develop true love and compassion. Hopefully, this is not the case with you, and your significant other really just needs some education in order to develop clear understanding of your limitations. Best of luck to you.
Gunner, first off no, you are NOT the only one whose RA makes intimacy challenging on a good day and damn near impossible on a bad one. I am fortunate to have a boyfriend who is very understanding, but we both still get frustrated at times, which I’m sure you know just adds to the difficulty. One thing that we do that (for us) helps the most is to have very frank discussions about the things that we each need the most and then we make a game out of finding new ways to make those things possible. The talk and the research (or idea generation) happen at specified times OUTSIDE of when we are trying to be intimate. This helps us both stay calm and not end up arguing or playing the blame game out of frustration.
I find that the talks themselves are acts of intimacy and give us both opportunities to find out what the other is really missing, plus, it can be great fun to try out the new ideas, too!
There are some very helpful websites out there specifically to help people with ‘disabilities’ enjoy intimacy, try googling it and /or when I am next at my computer I will add some to this post (on my Nook atm).
However you go about it, being honest and willing to talk about these things is the key, imho.
Best of luck and if you would like more specific ideas, feel free to email me. I didn’t think it appropriate to be overly frank here. 😉
GUnner, I can relate to everything you said about intimacy. I want to hold my husbands hand, with fingers interlaced so badly. Or hug strongly and spontainiously. I hate to have to give a rain check because I hurt to much or the fatigue has killed any chance of making love to the man I love so deeply. THere have been times when just lying in bed and spooning or cuddling or what ever you call it that I have silently stayed in that position in pain because I didn’t want to hurt his feelings or make him feel rejected. My husband is great about all this, but he deserves better. He’s been getting better about asking if he’s hurting me or if I want him to leave me alone. I tell him I never want him to leave me alone. He wants to help me by offering me a massage for my shoulders or feet and I have to tell him no because I couldn’t handle the pain of it. SO! on the rare days where for some reason I have more energy/less pain etc. we make up for lost time! Not an easy task with 4 kids too but where there’s a will there is a way! I love my husband so much, I agree with the others, gentle frank conversations. So your mate knows you still love them and need them. And to please don’t feel rejected, it’s just about being patient.
Gunner…I agree that reading your post was heart breaking…You have been given some great advice/feedback already…The only thing I wanted to add is it sounds like your disease is not as controlled as maybe it could be by adding or changing medications…Have you tried a Biologic drug like Remicade or Humira yet? They can make all the difference in the world for some people in how you feel and how the disease effects your everyday life…If your disease could be better controlled by new or different medications you may feel more like being intimate at least some of the time…Also I don’t think there are the same warnings about birth defects with some of the newer Biologic drugs so you might be able to go off MTX for awhile when you are taking a different medication that works well and at least try to have another child if that is what you want to do…All I am trying to say is that there are a lot of options for people with this disease these days and if one is not good enough move on to another one that might bring you more relief and better control over your disease…You still have a huge chance to feel better if you talk to your doctor (tell him about your intimacy issues) and are willing to try new/different medications…This may not be the BEST you could possibly feel…Good luck to you and keep trying…
Jewell
Hi everyone…I am a 60 year old female who 6 years ago was diagnosed with RA.Was put on leflunomide and metotrexate which have now quit working. Rheumy did an MRI and found fluid on my hips, hence the horrible pain in hips radiating into the groin area. Enbrel was mentioned but I have heard soooo many things about risk and side effects of this drug. Also everyone in my immediate family has passed away from some form of cancer..my mom, my dad, and both my sisters. I’m sure you can understand my fear of doing anything that would make my risk of cancer greater than it already is.Lymphoma is high on the risk list….and my gut keeps telling me to steer clear of Enbrel. Any suggestions..or comments!?? Thanks..Robin
Hi Robin,
I’m sorry to hear about so much loss. The lymphoma question is important because many don’t know that RA itself has been shown to double the risk of lymphoma. Back when the early enbrel trials were done, the patients were not even checked for lymphoma prior to the trials because RA has been studied so little and so little is known, that the lymphoma risk had not even been acknowledged. So there have been some recent studies showing that Biologics may not increase cancer risk. It’s also important to know that even with the increased risk from RA, the lymphoma risk is still small in comparison to many other things.
Also, there are 9 biologic drugs approved for RA in the US anyway – and so you would not need to use enbrel if you’d rather not – – each of them are different in formula or mechanism or both. And there are other dmards that could be added to your combination instead of the biologics.
I’m looking forward to a study coming out at next month’s ACR on the lymphoma risk with anti-tnf therapies (like enbrel) & I’ll report on that. I recommend you read through the posts here about Biologics & the comments pages to help you decide. Just click on the Tags List and click on Biologics. Here is one from the list:
http://www.rawarrior.com/do-rheumatoid-arthritis-drugs-cause-cancer/
I think the hardest thing I had to endure lately was being on a VERY long series of job interviews that involved walking up stairs and across a college campus. I begged off the stairs, knowing that my disability would rear its head the second I started going up.
It was awful: Disclose that I have a disabling chronic disease as part of the interview OR risk appearing like a fat, lazy person who doesn’t do stairs. I opted for the second. Didn’t get the job, either.
I’m still not sure how I could have avoided it short of disclosing that I have a disability, which is a death sentence in this job market.
My mother’s family has RA everywhere. I can’t say that I am thrilled that I have been diagnosed at 35 but I look at my great-aunt who at 80 with horrible RA was still going on cruises and I feel, not hope exactly, but not alone.
A cousin, a 2nd cousin my mother a great aunt… someone in our family has has had every symptom and tried every treatment so thatwhen I talk to my doctor and he wants to try it on me I say “Oh yeah ____ tried that and it worked really well.”
My Dr is lovely and says that what he likes about my family history is that it means I am not afraid of RA because I have seen people living with it and having flares and going into remission.
Today though my feet hurt and my fingers are aching and I feel sick from the meds. I kind of would’ve liked to inherit a great singing voice instead…..
indeed! me, too. or blue eyes!
I have a hard time.. feeling like I belong anywhere right now. i was diagnosed a few weeks ago, and all I know is my wrist hurt today but not until mid day, and the day before it was my fingers, all day, and the day before my knees and shoulders. I know today i was ok most of the day… I feel so LOST in this, because somedays I’m convinced it’s better until suddenly it’s not and then I go through this grieving process because I was convinced it was gone, and then it’s back. Sorry for the complaining, i just.. how do I tell someone that my relationship to this disease is ‘complicated?’
What you’re describing is common and I’ve heard it many times. We don’t see what is considered “typical RA” very often. Especially early on, it can seem to “move around” like you described.
I think it is part of the struggle because of the invisible nature of the disease. I can tell you from my own example, that even though it affects me 24/7/365, if I even have a day when the pain drops below a 5 or I don’t look swollen, I wonder if I’m better too. It only lasts minutes and a disability or pain or something else rears its head.
Forget explaining it to people…I can’t get my own freaking Rheumatologist to hear me. After Methotrexate quadrupled my liver enzymes in 2 weeks, he put me on Arava. I noticed the 1st month that I was extremely fatigued, unable to concentrate, unable to remember anything….just not me. But when the time came for my 1st follow up at 6 weeks, I couldn’t remember to tell him how I was feeling. I was mad at myself for failing to communicate at this appt. So, I kept a log for the next 5 months. The list of new issues was very long…I now hurt worse and all over, for one. —At my next appt I give him my type up list PLUS questions about exercises I could do, etc. He glanced at my list, said it sounded more like Fibro than RA, “…but you havve a positive RA factor so it’s RA…”, then he prescribes Humira, but tells me to keep taking Arava for another month so that I “can see just how good you really felt while taking it…” HUH??? He literally told me I couldn’t assess my own pain!!! I stopped taking everything and for the most part, I feel better. I still have RA and some days are worse than others, but I have my BRAIN back. I can focus on more than 1 task a day. — But the frustration of not having a dr I can trust is worse than dealing with the average uniformed, misinformed, well-meaning person. They are easier to forgive than the $150 an hr Specialist who needs to pull his head out of his rear orifice.
I read about RAWARRIOR while waiting to see the doctor today. I too have it everywhere but my feet/ankles. I feel fortunate. It is a horrible disease. I was diagnosed with it about 6 years ago but I have had the pain for over 10 years. The doctors just didn’t believe I had it for some reason. Anyone else run into that situation?
I’m in England and was diagnosed in 1995 at the age of 31 after at least 4 years of problems that were not recognised as RA, yet were ‘typical’ symptoms. SO FRUSTRATING! I could barely walk 100m and the first specialist I saw took one look at my tearful face and my ‘curled into claws’ hands and said “there’s nothing wrong with you… let’s straighten these out” – grabbed my agonising hand and pulled the fingers out straight! I let out such a scream that my husband came running in from the waiting room to see what was happening!
Fortunately (!?) that was the start of being taken seriously and I spent 3 weeks in hospital having intensive therapies to help me regain mobility in my hands and feet. Eventually a blood test showed RA and medication began that gave me back my life. It’s been 17 years now… I’m lucky I am not as badly affected as a lot of people whose blogs I’ve read on here. I volunteer for a Search & Rescue team with my dog and walk miles MOST weeks. My husband and 2 grown (but still at home) sons are helpful and understanding when I have a bad day, but this site and all contributions have made me realise that I am not alone in not always feeling ‘grateful’… I had artificial MCP joints in my right hand 18 months ago as the ulnar deviation had become so bad and painful… it has been amazingly successful in my opinion but it is only a matter of time before the other hand will need attention… and the overwhelming tiredness that hits on a bad day (let alone the pain in other parts) gets me down. I don’t need other people thinking I’m lazy…I’m good enough at that myself…but sometimes there’s nothing else for it but to give in and go with it, hoping things will be better the next day.
I hope you find someone to support you… we all need help!
I sometimes wish I hadn’t told anyone that I have RA. I feel like friends and family and even my husband of 27 years just think I have arthritis and use Ra as a crutch or something. I try to walk and exercise every day, but on days when my ankles feel like they are going to explode,and my fingers won’t bend,doing just about anything is impossible. Then there are the days when I do pretty well and cook, clean, walk etc..though noone knows things like how the menu changed,during prep, say if I was unable to use a knife, opena jar etc…I feel like my husband thinks “wow she’s healed, why was she so helpless las week?” then I’m expected to be perfect the next day. Friends seem to think now that I’m on meds I should just be the old me and be superwoman. Ther is just no wayto explain this disease to people that do not have it. It should not be called arthritis at all, because we all know “take some tylenol and get moving cures arthritis”
I have Adult onset still’s disease (in remission) and a really nasty case of osteoarthritis. my knees are bent 40 degrees. I can’t straighten my back when walking because of extensive oa of the spine. people don’t ask what I have. But if I am going in a door, people will come and open a door for me.