Wonderful article Kelly! It’s so hard when your mind says one thing and your body says another. I go through this everyday. My RA is in remission, so for the most part I’m not having any issues with it except for damages wrists. I do have a degenerative disk in my back that makes it very difficult to get up and moving. I want to do so much and the next minute the pain is so great and I feel as though I’m going to go flying to the ground. I’d love to have my life back too!
Kelly,
Your posting this morning says it all….my heart aches for you and all who have RA, and every day I wish so much that a “miracle” med will be discovered to alleviate your discomfort and let you all have your lives back!
I closed my eyes when I read this and imagined I was high in the sky on that swing…among the clouds..drifting..free from my ra body. I hope you reached that height on your swing. Funny how my imagination has gone into overdrive with my ra…taking me to places and sights I may not ever get to in my ra body. I am grateful I still have my mind…the ra has not touched that too much…yet. I wish from the depths of my heart that you find a doctor to help you in your search, in your quest to conquer this robber of your life.
I greatly sympathize with you. I have been having more of those kind of days then I care to validate lately. Wondering why? We always want to see if we can figure it out because we must be doing something wrong, right? If we just lived life right we would be one of the healthy people. Then I open my home page and see a new post from RA Warrior read it and realize that not only am I not alone but I am in excellent company. Be blessed today dear one.
I hear you Kelly. I’ve just had my bathroom re-fitted & it now needs prepping and decorating, a job I learned freshly out of school while working with my Dad. I used to lay turf, build sheds, garden & move heavy furniture with Dad, I loved that kind of work. Now I sit in my bathroom & think to myself, ‘Hubby’s going to have to do the prep, my hands, shoulders & wrists won’t cope with it’. I’m determined to paint it myself, it’s only a small room, but I know I’ll pay the price afterwards.
So many things I’d like the chance to have back, walking for hours with my kids, my little job, being able to dance!
But on the flip-side I look at the friends I’ve made through my support group, through posts on your pages & I feel blessed to have them in my life. I feel blessed to be able to help others as you do, when I have a new member, scared and alone, to be able to help them feel less afraid & to help them learn about the coming journey.
I’m glad you enjoyed your moment on the swing today, I wish you many more ‘moments’.
I was just crying about this the other day during one of my pity parties. I am newly diagnosed and have a 3 year old daughter. The list of things I’ve had to stop doing with her is so much longer than I’d like it to be. Yesterday I got so mad about not being able to give her the fun childhood that I had, I took her out for the day and overdid it… big time. Today, I’m paying for it. I can’t imagine doing this for 26 years when dealing with it for 26 WEEKS has me in such a depression that I now take medication for it. Enjoy your swinging time and if that’s all you accomplish today, at least you made one more memory.
I really want you to look into trying Collegan (Genacol )and L-Lysine 500 mg(now). read about it and change your diet. No potatoes, oranges,tomatoes, gluten, and peppers these all cause inflamation. Use a blender to blend Kale and strawberries with 1 cup of water. Release the body of the toxins will help you considerably. I was you and I feel so much better. I have no drugs in my body and i no longer take methotrexate. I have been on a raw diet, mediteranean diet for almost 6 months and i have been doing so much better.
Hi Tammie – that is great for you, so glad diet is your cure! You may not know is that many, many of us (myself included) have tried various diets – with the discipline that only comes from the fear that failure means either toxic medications or disability. I myself have tried gluten free, sugar free, caffiene free – both vegetarian and not — diets that feature high collagen, high Omega 3s, etc., etc., I could go on. Went to some VERY FAMOUS nutritionists (ie, million best seller authors) and tried their diets as well. Please be careful of sounding “know it all” by pronouncing your diet a cure all – Kelly has likely tried it, if it’s out there (I know I have). You are LUCKY that your diet is your cure – you are not more disciplined than others…LUCKY, LUCKY. Be cautious about taking on a tone that insults others who are not so LUCKY, and yet may have tried harder than you to cure themselves through diet and alternate therapies. Unfortunately for some of us, the Prednisone, MTX, DMARD route may be the only path…and even some of us are resistant to that. I only caution you on this becuase I have experienced first hand the bigotry of nutriotional “know it alls” that insist I’d be cured if I could only stick with the diet – it’s a bunch of BS that I don’t think other folks should have to suffer. If diet works, that’s great for you. If it doesn’t IT’S NOT YOUR FAULT…keep trying other therapies until you find the one that works for you. Now, off that high horse girl, eat that yummy food and feel good, but be sure to not prosteletyze that RA is cured by diet just because you are one of the lucky few – it hurts the newcomer to this disease by making them feel responsible for their pain and debilitation. Thanks.
I have been living with this disease for more than 5 years now and my brother has it too. My brother has been taking medication for over 26 years and has been uping the doses every year. The injections are so painful that he has difficulty doing it just once a week. As you probably know an autoimmune disease learns how to manipulate and change and what may work for you for a few months will soon change. When i developed this disease i couldn’t diaper my own baby, my 3 in half year old had to. I would have gone on the medicine back then but i knew there was a life risk and i needed badly to find a natural way to work with this disease. I have tried many different ways of working wth this disease naturally and after about six or more months the dissease affects me even harder. However, I am not willing to give up. I did take Methotrexate a year ago because i couldn’t stand to be touched i was in so much pain. i am 42 and i love people, i love to be hugged but i couldn’t handle it one bit so the natural way was failing and so i tried methotrexate and did i feel horrible i felt more weakened and dizzy. So when a friend of mine gave me articles about another natural healers of course i was skeptical, but i stopped the meds and dove right in. I am able to dance with my kids and they can hug me. I can do so many things that i wanted back. This may only be for a few months or weeks but i’d rather try then lose. I don’t care how many things you have tried that is you. Don’t tell me to get off my high horse. This is my life and i can tell my story just as you can. And perhaps, you are right and i am the lucky one. But who are you to say that someone out there doesn’t have the same chance. Our bodies are different!!!!!!!! NO one is the same. We will react differently to what ever we put in our bodies. I am sorry you haven’t had luck with natural ways. My physical therapist helped heal me as well. he worked with my body to find differed pains and helped me move again. Life is an everyday battle!!!! I am going to win!!!!!
I loved Julie’s reply and I’ll add. I have followed the “diet” for more than 1 year now. I am 100% vegan, no processed food, no gluten, no milk, so on. I was the biggest meat eater, junk food addict. Now I love my new eating habits. I got rid of high blood pressure, pre-diabetes, down to normal weight and got many other health benefits — but could not “cure” the RA (damn it, now I cannot even die from a heart attack – was hopping for a quicker and less painful end).
I love blended kale with papaya and pineapple – try it Tray 🙂
Regardless of the RA I plan to stay vegan – maybe it will work for me after 26 years 🙂
Just like Biologics, sometimes you are lucky and the diet works. Sometimes it does not. I recommend to all to give it a try. But I recognize it is not a magic bullet.
I have had numerous folks suggesting diet and all natural supplements to treat my RA. I also have a good friend that her mother has dealt with RA since she was a teen with multiple joint replacements etc. Now my friend has been diagnosed with RA. She said that the main point of seeking treatment is to try and slow or stop the progression of the damage done to your joints. Diets and supplements may help you to feel better but nothing except the drugs you get from your Dr will slow or stop the damage and that’s if your lucky and respond to the treatments. Not every one does. Is this correct?
We are all in the same boat in one way, shape or form. I’ve been experiencing muscle fatigue and weakness too. Doc noticed some quadricep wasting a few visits back. I get leg muscle fatigue/weakness that is more noticeable now upon walking fast, or up and down minor grade surfaces. Don’t know if it’s from Ra, back problems, long term prednisone use or what. What ever it is though, it’s been going on for years. Years ago I had to stop a stress test due to leg fatigue. And over the years, three seperate docs noted reduced knee reflex, though this has never been followed up on.
This exactly how I feel! I can deal with the pain that comes with this disease and that of also having fibromialgia. What has been the most difficult is losing the ability to physically do the things that I enjoyed just three years ago. I used to be active in sports and now can’t throw a ball or go bowling with the youth at my church. I can no longer swing a golf club or lift weights like I could before. I have to sit on the sidelines for so many activities that I enjoyed or not even attend functions that I enjoy with my teens because I’m fatigued beyond measure. I’m supposed to do a local mission trip in less than two weeks and am already concerned that I may become a burden to my group even though we have an easy work site as I never know when I’m going to wake up and struggle to get out of bed. I fear that it may be my last big event with the young people I’ve grown to love (I’ve been a youth ministry volunteer for over 20 years). All I know to do is lift it up in prayer and let the Lord be the decision maker and let Him be my source of strength and guide me where He wants me to be.
Hi Bernadine, I hope that you can go and be able to do more than you thought you could. I don’t know how, but we often FIND a WAY to FORCE ourselves to get ourselves up & keep going. I prayed for you that you won’t have to give up working with these kids before you are ready.
Thanks Kelly! I truly believe in the power of prayer and it truly is what many times gets me out of bed in the morning. I’m really glad that I found your site and others where I’ve been able to network with others and learn more about this disease. I remember the first year after my diagnosis I struggled to find information but as my disease has progressed I’ve been introduced to people who are a great source of encouragement to me.
I’m new to this site and soooooo appreciate this article as well as ALL the others! I’ve had RA for 31 years now, since age 15, and have felt so agonizingly alone in it…until I found this site. I can truly relate to waking up every morning with my healthy athletic self-image ready to go, that is until I try to move. Every morning is a process of letting go of all the things I want so badly to do… to bike, dance, hike, garden, play the piano again..or even just to walk or move without pain…. to feel graceful again. This disease BLOWS in so many ways most people could never imagine! I wish us all more movement, less pain… and those beautiful moments of peace in our hearts … swinging on the swing!
I YEARN for the life I lost. I MOURN for it. I’m not feeling pity or sorry for myself, but I definitely cry mourning for something that I fear will never come again. I was so strong (for a woman) – my kids use to tease me about “Mom’s guns” – and the strength I had. I was proud of it, and even when I was married I chose to do hard physical work around the house because I enjoyed being able to do it Now, my husband asks me to do things “just help me move this table”, “just help me bring this package up”, “here hold this for a minute” — I CAN’T DO IT! So, on top of the loss of my independence and pride in my ability to work hard, I’m also disappointing to my new husband, who thinks he has a lazy woman on his hands. He didn’t know me before RA (onset 2 years ago) and has no idea what my kids are talking about when they reference “Super Mom” — the woman who was capable of anything. Today, I can’t hold a bag of groceries and, if you hand me a dish to dry, chances are I will drop it. I see his frustration in this “lazy” “weak” woman – if he only knew who I really am (or, was) he wouldn’t come down so hard on me not doing these “easy” tasks he gives to me. I mourn my independence, I want to be strong and free again.
Judy
Judy, I really feel with you and feel for you on this. I too, so wish my husband knew me “before” ….or during those blissful but all too brief years of remission. It’s so painful knowing your potential and who you are in spirit and not being able to follow through body wise. Ugh, painful isn’t even the word…agony. I was so strong and athletic before too. Still am on the inside. Its like a cage. I wish for you to be strong and free again too. If only your husband (and mine and many!) could really understand that getting through a day with RA takes more strength than they could even imagine. Sending a big hug to you
Dearest Kelly,
I am new to your site, for, unfortunately, obvious reasons. Your insights hit home as I sit, on short term disability, waiting to get a return to work.
I am a desk jockey nurse, a “wuss” among those hard core a-hole nurses (one of whom I used to be – DON’T CALL OUT ON MY SHIFT YOU WEENIE!!”) …I should be able to do a simple 9-5 at my desk, yet alas I cannot . And no one at my office can understand…..no one….sigh….even the nurses….
I am not yet “officially diagnosed” with RA or possibly AS. I do have lingering effects from a recent weird bout of mono (the old kissing disease) that I also had when I was 16. I have a positive RA titer only once, and a positive HLA-b27 (if I have that right), yet not one Rheumatologist (I am seeing my 4th next week) will commit to me- because my ESR is low normal, and I have swelling free but extremely painful joints and low back. My GI doctor did diagnose collagenous colitis, and seems sympathetic, but he too has AS, and has an insight he cannot document for fear of shedding light on his own problems and risking his career…how sad…
Now an Infectious disease doc (do I have lyme or HIV?? there’s a stretch in the diagnostic continuum!) and a pain PA-C (you have migraines from stress “dear:) have told me NO WORK until this is straightened out (there may be a cardiac problem, and I seem to have a cognitive issue…one that I was woefully want to admit to, but apparently a common part of this autoimmune disaster). Colleagues don’t believe me, my fatigue, my pain are poor excuses for whatever they think I am trying to escape. I look OK, yet I sleep for hours to rest and divest myself of the pain. I am persona non grata in a workplace full of “compassionate” care givers. It does not give one a sense of support. Yet I find myself getting used to their opinion, and second guessing my own situation. Their influence is incredible…
Thank God for a family who supports me no matter what. They do get an occasional giggle when I have forgotten something trivial….did I feed the dogs? They (the dogs) lie to me and I believe them…then wonder why the golden retriever is looking a little pudgy!! Or why did the Jack Russell poop in the house??. Mom, they say, don’t you remember? You just fed them!! That is a benign issue, but getting lost coming home the other day, at age 48, is just plain frightening and discouraging. The docs say it will get better once I am “in remission”…from what I ask, no one dare give me a diagnosis I can work with!!…Ugh! Somehow, I know you understand…
This week, I came upon your website, and I cried, laughed and felt validated. And my heart goes out to you, because I think I understand. Better yet, i KNOW you do.
I won’t bother you with more details, except to say I hope I can maintain your sense of humor and spirit. Along with your wisdom and intellectual insight. And that if I write to you on occasion, and you get a lift just a fraction of what you have given me in the last few days, I will be honored. .
Thank you for your well written, and validating blog. God Bless, Sister.
Love,
Nancy Petlon RN Dover NH.
Hi Nancy,
Your letter says so many things that are unfortunate common themes for people with RA or seeking diagnosis. I’m sorry you are going through all this and thank you for making your letter public here so that others can read and learn and be encouraged. I will look forward to hearing from you more.
Four rheumatologists is not that unusual. It’s not you. Hopefully the diagnosis will become clear soon. There are more extensive things that can be done if you have neg. blood work. Very few are skilled in it yet, but there is ultrasound of an affected joint. There is also examination of the fluid from an affected joint. I’ve even heard ofl unusual methods of diagnosis that came from non-rheumatologists when a person could not get diagnosed- like some who are diagnosed during surgery because a surgeon “saw” the RA.
wanting a life back. wow that is just something so important yet it most people would never think that a common disease like arthritis could capture. I have laid in bed at night crying, and not just because of the pain but because it is frustrating. frustrating that my doctor, family or friends dont understand. frustrating that this has happened to me so young while I watch my friends run, and bend and lift up heavy things. I am frustrated by the horrible aching coming from every hing of my body and i am frustrated becuase it has taken my life away.
This article’s title certainly caught my attention. I’m newly diagnosed this last spring, and the “I want my old life back” phrase has been my refrain in my worst moments. I of course don’t wish these feelings on anyone else, but it does help to know I’m not the only one feeling them.
You know, on the diet question, I was a jogging, mountain-biking, kayaking vegan grandmother before the symptoms of RA hit. I was familiar with the work of Dr. McDougall and many others, so when I was diagnosed, the first thing I did was begin a rigorous elimination diet in earnest faith that it would make a difference. I wasn’t on dairy products beforehand, of course, being vegan, but I eliminated nightshades, citrus, gluten, corn, nuts, and many other foods known or supposed to heighten inflammation. I was strict about it. It unfortunately made no difference to my symptoms because I have worked all my life to make sure I don’t need the kinds of medications that are caused by lifestyle choices that I could control. Neither did adding back any of the eliminated items one by one worsen my symptoms. Foods just didn’t make a difference one way or the other. I do believe that some people probably suffer worse symptoms if foods trigger inflammation, and some are helped or see their symptoms disappear by eliminating those triggers. However, I don’t believe that finding and eliminating food triggers is possible for all. Despite diligent research, strict discipline and full faith in the possibility of finding a food trigger, it just didn’t work for me. It was a struggle for me to come around from the feeling that I had done something wrong that was causing my illness to the idea that I hadn’t caused it and couldn’t correct it by myself. I’m now on Enbrel, begun when the methotrexate I took first did not work. I actually think I see some difference for the first time since this saga began, and tonight, that belief was confirmed when a friend blurted out, “You seem better. You seem like your old self.” Not like my old self, certainly, because I was putting on a good face in a social situation, but better, and I will be so grateful if I turn out to be one of the lucky ones for which a second medication regime works.
Linda – thanks for this note. I am in the exact same boat. I also did a 15 day water-fast (I highly recommend it – but did not “cure” my RA). I’ve met people who got rid of RA by changing the diet. It works, but not always. You and I are here to proof. Good luck with Enbrel.
I was wondering, did you ever had test for “leaky gut”?
Alberto, I had no test for leaky gut to my knowledge, although my rheumatologist had been open–but not particularly hopeful–to the idea that food triggers might be found. I was just operating on the thought on my own that the leaky-gut problem might have been part of what was going on. Unfortunately, if it is, my very strict elimination diet didn’t find it. My rheumatologist also believes that with my positive ANA, high RF factor and high anti-CCP antibodies, I need aggressive treatment. I’m so anti-medication that I resisted that idea, but after much research, I came around to a different way of thinking. If there’s something I can do to avoid medication–my vegan diet that lowered my cholesterol level from 241 to 140 without medication, for example–I’ll do it gladly, but if not, I don’t want a disease simmering for years while I refuse medication. This is just my opinion and maybe not the right option for everyone.
Kelly,
I’ve only had to live with my RA diagnosis for 1 year, 1 month, 6 days and can’t imagine having to live 26 years with it as you have! Given my age — just turned 60 — I doubt if I have 26 years with RA ahead of me. But, like you, I wish I had my life back, too.
I always thought I’d be able to accept my aging process “gracefully,” which is why I never did anything to change the color of my hair as more “highlights” (as my stylist calls my gray hair) continued to be more prominent with the passage of time. But RA has imposed physical limitations on me way before I was ready for them and am truly frustrated by the way my body has betrayed me.
My husband and I went on our first cruise in 2008 and on our land excursions I was able to climb the steps of arenas in ancient ruins of Greece and Turkey; now I barely manage the 3-4-inch change of levels between the rooms in our home. I walked the streets of Rome for hours on end; now I need an accessibility placard to ensure I can park close to the entrance of stores and restaurants and a walker to support my effort.
My children and grandchildren are very aware that I’m in pain 24/7 and that I do what I can to manage it. My husband shares the care of his Mom who has Dementia of the Alzheimer’s Type with his brother. They are the only two here on Guam because their other siblings live in the US Mainland. Neither my husband nor anybody in his family seem to “get” that RA is a serious disease which limits my capabilities. MIL stays with us on weekends and when I ask him for help (break the seal on my water bottle, hook/unhook my bra … whatever) while she’s with us, he sighs (but denies doing it, even though I hear him) as though he has too much on his hands in helping not just his frail Mother whose disability is apparent but also his wife who looks healthy but seems to be unable to do much for herself. He’s more willing to help me during the week when it’s just the two of us, but he doesn’t realize that I still need his help on weekends.
Needless to say, my stress level is higher on weekends so my pain level increases and my physical limitations feel worse — UGH!!!
that sounds very tough Mary Lou. I hope you can find a treatment that makes it get easier on you.
It’s so strange how “looking healthy” can fool people about RA. When people are diagnosed with cancer or diabetes, they often look healthy too. It’s not an accurate measure of health.
Sometimes I think that it is much simpler this life I live compared to the much more complex, challenging existence I once had. I too, used to do it all…the sewing, painting, cooking, woodworking and on and on. Now all that is left of that life are the traces, a picture on the wall, that table, etc. Recently I moved. I have paint swatches in every room. Hope springs eternal! My arms ache just looking at them. I do believe in magic. Last month I managed to paint my front door. It is now the boldest, brightest, deepest shade of yellow. It makes me laugh. I seem to be the only one on this planet that likes it. The name of the paint color is forsythia. I call it defiant. Now I will think of you too, Kelly whenever I come home.
Thank you for your message Donna. A front door is symbolic, isn’t it? It can symbolize what’s in the house & who’s in the house. Mine always had a wreath. Often fresh for the season or holiday. Now it looks neglected. I won’t give up hope that somehow I will be able to get it taken care of.
I’ve just come across your brilliant website for the first time today. I’m 28 with PA and it drives me mad – I woke up today thinking exactly ‘I want my life back’ and then remembered all the things I am grateful for and how much I don’t want to be a victim of it.
Swing therapy sounds a great place to start! I think you and Roo are onto something
I totally understand. There are some moments that though they may be filled with pain, are so happy for me. It’s worth the strain of the shoulders, the pain in my hands, the ache in my back to rock my baby to sleep. I absolutely love your blog. It’s like I’ve found my own thoughts written out for me. Thank you!
Kelly, it is amazing how you touch on so many different ways this disease effects us all. I also realize how hard it must be for someone that does not have RA to relate. For the most part we do look “normal”. I’m around 50 lbs north of normal for me thanks to steroids, but people probably think I’m just fat. I would love my old life back. I am single so there is no one else to do all of the things I loved to do before. Like mow the yard, paint, etc.
I have had a problem with nausea since my ill fated bout with Sulfasalazine. Not severe, just constant. It has been close to a month since I quit taking it, wonder why the nausea is sticking around? My dr did start me on Plaquinil a couple of weeks ago. Does it take a while for sulfa drugs to leave your body? Just wondered if anyone else has experienced this.
Hi Becky, I haven’t taken that drug so I looked it up for you & called a pharmacist & it seems the sulfa would be out of your system in a day or two.
I can’t say what’s going on w/you & you should talk w/your docs about it; but personally, I have blamed meds for symptoms (including nausea) & later realized that it was actually my illness (RA, I suppose) because I went off the meds for a period & the symptoms continued.
Hope you feel better soon either way.
Thank you Kelly. Maybe it is something else. I will ask the dr when I go next month. Makes it hard to take my MTX but tonight’s the night. Wish good days for all of you!
I cried when I read the first paragraph. My name is Donna Lacey and I have just joined this site. I have non-discript connective tissue disorder. I have lived with this for I don’t know how long. This winter it blew up. Symtoms reached a critical state and I have not handle it well. With the love and support of an incredible family and I am working on accepting the change. Looking forward to hearing other people’s stories.
Hello Warriors
for those interest….I just found a wonderful site for those of you that are Christians and would like to connect with other Christians suffering with chronic pain and disability.
It’s called Rest Ministries. It picks up where our churches may be lacking. The also connect with a home support group ministry called HopeKeepers.
Here’s the link http://RestMinistries.com
Hope this is ok to share, Kelly.
Hi Nancy, I’m sorry to read of your pain and illness. I’m also an RN with RA, and your story is oh so painfully familiar. I too suddenly became terribly, terribly ill with no clear diagnosis. I went from being “the healthy one” who exercised and ate a healthy diet to unable to work. My colleagues ranged from supportive to downright mean. And as you have experienced, nurses can be shockingly unkind to their own. I had been a nurse for 25 years, but I didn’t know much about autoimmune disease and neither did my colleagues or my internal medicine doc. I finally got into see a rheumatologist, and it took almost a year to get a diagnosis, and another year to bring the disease under control by finding the right combination of medications. Life is different now, my pace is slower and my priorities have changed, but I’m finding a new balance and a new way of living, which includes shedding those unsupportive people from my life. Hang in there. Its a hard road but you will find your way too.
Hi
I went to a rhuemy the other day PC sent me my Rheumatoid factor came back abnormal.
So the rheumy said after looking me over it looks like you have a type of inflammatory arthritis just have to narrow it down to which one? There was synovitis of the hands and feet. I asked her about her about my knuckles( i cant get my wedding ring over them) she said once we get you on the good meds they may go down. they took many vials of blood and xrays of my hands and feet. she also insisted on giving me a shot of depo medrol in my bum. I go back i 2 weeks the waiting is killing me not to mention I hurt and ache my ankles,shoulders,stiff hands in the morning wrists sometimes
I am also new to this website. It is incredible. I have had RA for over 20 years now and it is getting worse. I think I have been in remission for the last years. I have taken MTX and Sulindac & folic acid and that is it. The main problem I have is with my shoulders (mainly the left one) and my elbows. Other joints are affected also but not to the point of needing replacements. I am 53 and wonder just when do you opt for a replacement for a shoulder? I can only move my left arm half was up and that is with considerable pain. Unfortunately, my rheum didn’t help me with exercise to keep the joint limber. Maybe it wouldn’t have helped anyway.
Also, do you have excessive fatigue? If I sit down in the afternoon I can fall asleep almost instantly. I have very little energy to do anything. I work retail and am on my feet for about 7-8 hours a day and that is getting harder all the time too.
I will be seeing a new rheum this fall because the one I had since I was diagnosed has cancer and is on medical leave. I will be going to a young, female Dr. from Nigeria. I am hoping she will have some new insights for me and will help me.
Thank you for this website. I will check it often.
Carol, I’ve been off a few days. I hope you are still reading.
I think there is a lot of variety about how doctors handle shoulder joints – replacements or therapy or resurfacing. Maybe it would be good to get more than one opinion – possibly from an orthopedist. Good luck with it.
There are some posts here on the fatigue. It varies, but many are in the same boat with you. You can click on the Tags List at the top of the page to look for RA Fatigue. You might find the comments helpful.
Kelly its amazing how you can tap into what we are all feeling. I was just thinking that this weekend as I walked around Catalina Island and saw all the cool thing i would have done before this disease. all my friends went snorkeling and i had to pass because the rocks were to slick and i was afraid i was going to fall. they all went out dancing and drinking and I had to go home and go to bed because i was so tired.
I used to be the one lugging the big bags of cement and building things with my dad, then in college i could man handle large pigs and sheep ( i was an animal science and microbiology student), and saddle horses. now i cant even bathe my dog.
I have been with my husband for close to 20 years (we meet when we were 17) and even though he has been by my side this whole time he still thinks i am being lazy and that i should just fight the fatigue like he does. he does not get that its a different fatigue then just going to bed late. its a full body, sitting on the couch wondering if i really have to pee that bad or can it wait cause you don’t want to get up, fatigue.
to top it all off the dang steroid caused me to gain 65 pounds that i now have no energy to walk off…
really feel for you tonight. I actually miss lifting 50lb bags of concrete or compost! I’ll bet you’d prefer that too. I’m right there with you. I actually put this link up tonight as I had been muttering to myself something about I can’t take being sick any more…
I’m so tired I almost didn’t have it in me to post but I had to. This wonderful article made me think and cry (as I am sure most of us did). I am so sick of being sick and tired. Pain is just an everyday common occurrence. And then I get mad at myself because there are people out there with much more horrific ailments than me and I say I shouldnt complain.
Everyday is a crap shoot. I never know how it will be. I used to be like an Amazon woman – tough as nails – I’d lay my own floor, paint the house, put in a patio. Now I need help opening my coffee can. I was diagnosed one month before I turned 50 (almost 3 years ago). My husband is 15 years older than me and I am scared that when we are older I will be the one that needs the help. You are all in my thoughts and prayers.
innie my mother has HORRIBLE Ra and is basicly disabled. my father is 14 years older then her (she is 68 and he is 82) and he does take care of her, but he does not mind he says he loves spoiling and caring for his beautiful hild bride!
Kelly~ I feel it. Many of us feel it. It was hard to hold back tears. I know the “no pity” thing. It wasn’t because I felt bad for you that the tears fell, it was because I completely understood and was to relieved to see my feelings so well-put in your words. You are not alone. I want my old life back too. ~Hugs~
Ive had my RA since I was 23 and am now 61. I still want my old life back after all these years, but honestly its been so long that I dont remember what it was like to be well. I have a lot of old photo albums of my old life, but when I look at the photos of that once healthy young man,a great sadness overwhelms me and I have to close the album. I really dont remember being that agile and physically fit, but I was, once upon a time, but no more. I guess Im not tough enough and Im not ashamed to admit it. I hate this life with RA. Its a cruel disease that takes everything of physical value from you.
Thank you all so much. I am an LVN and was granted disability 3 years ago. Still feel guilty about it cause in my head, I should be working. I don’t share that i’m on disability because ” I look so good ” and just don’t want to hear the negative comments. Always afraid that ” they will take it away from me”. I can’t imagine anyone hiring me after a drug test. Even though the drugs are prescribed. During my hearing, I was told I could be a telephone operator or a copier. Really? Fortunately, didn’t have to do that. God bless you all. This site is a blessing. BTW. I tripped and had my first fall on Monday. Nothing broken, just bumps, bruises, skin tears, and lots of pain. I pray for my warriors every day.
I read this article and it may have hit me harder than many others. I am new to the site, but not to the disease. I have been fighting this for a very long time now, maybe 25 years in various forms. It is a battle and I read this and realized how tired I am. Some days I am tired of fighting and am ready to give up. Some days I don’t want to wake up because laying in bed is it’s own torture. But, Every morning I get up and go to work and not talk about it. Every day I do what I need to do to make it through. I have people who count on me. My family, my employer, people at church… They are all tired of hearing about my problems when they all have their own to deal with. So, I deal with it. We try stuff, it doesn’t work and then we try something else. Because I know that I am still here because God has a plan for me. If He didn’t, I wouldn’t be here. “I can do ALL things through Christ who strengthens me.” Thank God, it’s not through my strength, or I would have given up long ago. Stick with it, fight the good fight. Keep trying. I really feel like some people look at the medicine as a “failure”, but I know I couldn’t do it without them. I will keep trying different diets and changing with this disease of Satan, but I won’t stop taking the medicines short of a miracle from God!
First, wow…so rude! Second…are you RF positive? And third…you “success” may very well be coincidence as you may have coincidentally just gone into remission. Saying a particular diet will cure you is the same as I’ve been told on many occasions that I obviously do not trust God enough or worship enough because if I did, surely I would have been healed 23+ years ago!!! Yea, right…
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Wonderful article Kelly! It’s so hard when your mind says one thing and your body says another. I go through this everyday. My RA is in remission, so for the most part I’m not having any issues with it except for damages wrists. I do have a degenerative disk in my back that makes it very difficult to get up and moving. I want to do so much and the next minute the pain is so great and I feel as though I’m going to go flying to the ground. I’d love to have my life back too!
Thank you for sharing a much needed reminder that the simple, sweet moments are medicine for the soul!
Kelly,
Your posting this morning says it all….my heart aches for you and all who have RA, and every day I wish so much that a “miracle” med will be discovered to alleviate your discomfort and let you all have your lives back!
I closed my eyes when I read this and imagined I was high in the sky on that swing…among the clouds..drifting..free from my ra body. I hope you reached that height on your swing. Funny how my imagination has gone into overdrive with my ra…taking me to places and sights I may not ever get to in my ra body. I am grateful I still have my mind…the ra has not touched that too much…yet. I wish from the depths of my heart that you find a doctor to help you in your search, in your quest to conquer this robber of your life.
tearful thanks, deb.
I greatly sympathize with you. I have been having more of those kind of days then I care to validate lately. Wondering why? We always want to see if we can figure it out because we must be doing something wrong, right? If we just lived life right we would be one of the healthy people. Then I open my home page and see a new post from RA Warrior read it and realize that not only am I not alone but I am in excellent company. Be blessed today dear one.
thank you ♥
I hear you Kelly. I’ve just had my bathroom re-fitted & it now needs prepping and decorating, a job I learned freshly out of school while working with my Dad. I used to lay turf, build sheds, garden & move heavy furniture with Dad, I loved that kind of work. Now I sit in my bathroom & think to myself, ‘Hubby’s going to have to do the prep, my hands, shoulders & wrists won’t cope with it’. I’m determined to paint it myself, it’s only a small room, but I know I’ll pay the price afterwards.
So many things I’d like the chance to have back, walking for hours with my kids, my little job, being able to dance!
But on the flip-side I look at the friends I’ve made through my support group, through posts on your pages & I feel blessed to have them in my life. I feel blessed to be able to help others as you do, when I have a new member, scared and alone, to be able to help them feel less afraid & to help them learn about the coming journey.
I’m glad you enjoyed your moment on the swing today, I wish you many more ‘moments’.
reading your words is such a blessing – I just want to say: Yes. & good luck w/the painting. I hope you can do it!
Thanks Kelly 🙂
I was just crying about this the other day during one of my pity parties. I am newly diagnosed and have a 3 year old daughter. The list of things I’ve had to stop doing with her is so much longer than I’d like it to be. Yesterday I got so mad about not being able to give her the fun childhood that I had, I took her out for the day and overdid it… big time. Today, I’m paying for it. I can’t imagine doing this for 26 years when dealing with it for 26 WEEKS has me in such a depression that I now take medication for it. Enjoy your swinging time and if that’s all you accomplish today, at least you made one more memory.
I’m crying with you Kelly. My arms are so weak and they look worse. I want my strength and my life….God bless us!
I really want you to look into trying Collegan (Genacol )and L-Lysine 500 mg(now). read about it and change your diet. No potatoes, oranges,tomatoes, gluten, and peppers these all cause inflamation. Use a blender to blend Kale and strawberries with 1 cup of water. Release the body of the toxins will help you considerably. I was you and I feel so much better. I have no drugs in my body and i no longer take methotrexate. I have been on a raw diet, mediteranean diet for almost 6 months and i have been doing so much better.
I would rather bleed from the throat than blend kale with strawberries and ingest it.
*snortlaughing*
Hi Tammie – that is great for you, so glad diet is your cure! You may not know is that many, many of us (myself included) have tried various diets – with the discipline that only comes from the fear that failure means either toxic medications or disability. I myself have tried gluten free, sugar free, caffiene free – both vegetarian and not — diets that feature high collagen, high Omega 3s, etc., etc., I could go on. Went to some VERY FAMOUS nutritionists (ie, million best seller authors) and tried their diets as well. Please be careful of sounding “know it all” by pronouncing your diet a cure all – Kelly has likely tried it, if it’s out there (I know I have). You are LUCKY that your diet is your cure – you are not more disciplined than others…LUCKY, LUCKY. Be cautious about taking on a tone that insults others who are not so LUCKY, and yet may have tried harder than you to cure themselves through diet and alternate therapies. Unfortunately for some of us, the Prednisone, MTX, DMARD route may be the only path…and even some of us are resistant to that. I only caution you on this becuase I have experienced first hand the bigotry of nutriotional “know it alls” that insist I’d be cured if I could only stick with the diet – it’s a bunch of BS that I don’t think other folks should have to suffer. If diet works, that’s great for you. If it doesn’t IT’S NOT YOUR FAULT…keep trying other therapies until you find the one that works for you. Now, off that high horse girl, eat that yummy food and feel good, but be sure to not prosteletyze that RA is cured by diet just because you are one of the lucky few – it hurts the newcomer to this disease by making them feel responsible for their pain and debilitation. Thanks.
I have been living with this disease for more than 5 years now and my brother has it too. My brother has been taking medication for over 26 years and has been uping the doses every year. The injections are so painful that he has difficulty doing it just once a week. As you probably know an autoimmune disease learns how to manipulate and change and what may work for you for a few months will soon change. When i developed this disease i couldn’t diaper my own baby, my 3 in half year old had to. I would have gone on the medicine back then but i knew there was a life risk and i needed badly to find a natural way to work with this disease. I have tried many different ways of working wth this disease naturally and after about six or more months the dissease affects me even harder. However, I am not willing to give up. I did take Methotrexate a year ago because i couldn’t stand to be touched i was in so much pain. i am 42 and i love people, i love to be hugged but i couldn’t handle it one bit so the natural way was failing and so i tried methotrexate and did i feel horrible i felt more weakened and dizzy. So when a friend of mine gave me articles about another natural healers of course i was skeptical, but i stopped the meds and dove right in. I am able to dance with my kids and they can hug me. I can do so many things that i wanted back. This may only be for a few months or weeks but i’d rather try then lose. I don’t care how many things you have tried that is you. Don’t tell me to get off my high horse. This is my life and i can tell my story just as you can. And perhaps, you are right and i am the lucky one. But who are you to say that someone out there doesn’t have the same chance. Our bodies are different!!!!!!!! NO one is the same. We will react differently to what ever we put in our bodies. I am sorry you haven’t had luck with natural ways. My physical therapist helped heal me as well. he worked with my body to find differed pains and helped me move again. Life is an everyday battle!!!! I am going to win!!!!!
I loved Julie’s reply and I’ll add. I have followed the “diet” for more than 1 year now. I am 100% vegan, no processed food, no gluten, no milk, so on. I was the biggest meat eater, junk food addict. Now I love my new eating habits. I got rid of high blood pressure, pre-diabetes, down to normal weight and got many other health benefits — but could not “cure” the RA (damn it, now I cannot even die from a heart attack – was hopping for a quicker and less painful end).
I love blended kale with papaya and pineapple – try it Tray 🙂
Regardless of the RA I plan to stay vegan – maybe it will work for me after 26 years 🙂
Just like Biologics, sometimes you are lucky and the diet works. Sometimes it does not. I recommend to all to give it a try. But I recognize it is not a magic bullet.
I have had numerous folks suggesting diet and all natural supplements to treat my RA. I also have a good friend that her mother has dealt with RA since she was a teen with multiple joint replacements etc. Now my friend has been diagnosed with RA. She said that the main point of seeking treatment is to try and slow or stop the progression of the damage done to your joints. Diets and supplements may help you to feel better but nothing except the drugs you get from your Dr will slow or stop the damage and that’s if your lucky and respond to the treatments. Not every one does. Is this correct?
We are all in the same boat in one way, shape or form. I’ve been experiencing muscle fatigue and weakness too. Doc noticed some quadricep wasting a few visits back. I get leg muscle fatigue/weakness that is more noticeable now upon walking fast, or up and down minor grade surfaces. Don’t know if it’s from Ra, back problems, long term prednisone use or what. What ever it is though, it’s been going on for years. Years ago I had to stop a stress test due to leg fatigue. And over the years, three seperate docs noted reduced knee reflex, though this has never been followed up on.
This exactly how I feel! I can deal with the pain that comes with this disease and that of also having fibromialgia. What has been the most difficult is losing the ability to physically do the things that I enjoyed just three years ago. I used to be active in sports and now can’t throw a ball or go bowling with the youth at my church. I can no longer swing a golf club or lift weights like I could before. I have to sit on the sidelines for so many activities that I enjoyed or not even attend functions that I enjoy with my teens because I’m fatigued beyond measure. I’m supposed to do a local mission trip in less than two weeks and am already concerned that I may become a burden to my group even though we have an easy work site as I never know when I’m going to wake up and struggle to get out of bed. I fear that it may be my last big event with the young people I’ve grown to love (I’ve been a youth ministry volunteer for over 20 years). All I know to do is lift it up in prayer and let the Lord be the decision maker and let Him be my source of strength and guide me where He wants me to be.
Hi Bernadine, I hope that you can go and be able to do more than you thought you could. I don’t know how, but we often FIND a WAY to FORCE ourselves to get ourselves up & keep going. I prayed for you that you won’t have to give up working with these kids before you are ready.
Thanks Kelly! I truly believe in the power of prayer and it truly is what many times gets me out of bed in the morning. I’m really glad that I found your site and others where I’ve been able to network with others and learn more about this disease. I remember the first year after my diagnosis I struggled to find information but as my disease has progressed I’ve been introduced to people who are a great source of encouragement to me.
I’m new to this site and soooooo appreciate this article as well as ALL the others! I’ve had RA for 31 years now, since age 15, and have felt so agonizingly alone in it…until I found this site. I can truly relate to waking up every morning with my healthy athletic self-image ready to go, that is until I try to move. Every morning is a process of letting go of all the things I want so badly to do… to bike, dance, hike, garden, play the piano again..or even just to walk or move without pain…. to feel graceful again. This disease BLOWS in so many ways most people could never imagine! I wish us all more movement, less pain… and those beautiful moments of peace in our hearts … swinging on the swing!
Thank you, Karen!! So well said.
I YEARN for the life I lost. I MOURN for it. I’m not feeling pity or sorry for myself, but I definitely cry mourning for something that I fear will never come again. I was so strong (for a woman) – my kids use to tease me about “Mom’s guns” – and the strength I had. I was proud of it, and even when I was married I chose to do hard physical work around the house because I enjoyed being able to do it Now, my husband asks me to do things “just help me move this table”, “just help me bring this package up”, “here hold this for a minute” — I CAN’T DO IT! So, on top of the loss of my independence and pride in my ability to work hard, I’m also disappointing to my new husband, who thinks he has a lazy woman on his hands. He didn’t know me before RA (onset 2 years ago) and has no idea what my kids are talking about when they reference “Super Mom” — the woman who was capable of anything. Today, I can’t hold a bag of groceries and, if you hand me a dish to dry, chances are I will drop it. I see his frustration in this “lazy” “weak” woman – if he only knew who I really am (or, was) he wouldn’t come down so hard on me not doing these “easy” tasks he gives to me. I mourn my independence, I want to be strong and free again.
Judy
Judy, I really feel with you and feel for you on this. I too, so wish my husband knew me “before” ….or during those blissful but all too brief years of remission. It’s so painful knowing your potential and who you are in spirit and not being able to follow through body wise. Ugh, painful isn’t even the word…agony. I was so strong and athletic before too. Still am on the inside. Its like a cage. I wish for you to be strong and free again too. If only your husband (and mine and many!) could really understand that getting through a day with RA takes more strength than they could even imagine. Sending a big hug to you
Hi Kelly
My feelings exactly.Even after 15 years, I so
want my life back.
I am trying so hard to trust that the Lord wants
to give me some kind of meaningful new one.
Enjoy your swing. don’t know if I could do a swing, but so wish I could get into a nice warm pool. That could happen sometime. (-:
Dearest Kelly,
I am new to your site, for, unfortunately, obvious reasons. Your insights hit home as I sit, on short term disability, waiting to get a return to work.
I am a desk jockey nurse, a “wuss” among those hard core a-hole nurses (one of whom I used to be – DON’T CALL OUT ON MY SHIFT YOU WEENIE!!”) …I should be able to do a simple 9-5 at my desk, yet alas I cannot . And no one at my office can understand…..no one….sigh….even the nurses….
I am not yet “officially diagnosed” with RA or possibly AS. I do have lingering effects from a recent weird bout of mono (the old kissing disease) that I also had when I was 16. I have a positive RA titer only once, and a positive HLA-b27 (if I have that right), yet not one Rheumatologist (I am seeing my 4th next week) will commit to me- because my ESR is low normal, and I have swelling free but extremely painful joints and low back. My GI doctor did diagnose collagenous colitis, and seems sympathetic, but he too has AS, and has an insight he cannot document for fear of shedding light on his own problems and risking his career…how sad…
Now an Infectious disease doc (do I have lyme or HIV?? there’s a stretch in the diagnostic continuum!) and a pain PA-C (you have migraines from stress “dear:) have told me NO WORK until this is straightened out (there may be a cardiac problem, and I seem to have a cognitive issue…one that I was woefully want to admit to, but apparently a common part of this autoimmune disaster). Colleagues don’t believe me, my fatigue, my pain are poor excuses for whatever they think I am trying to escape. I look OK, yet I sleep for hours to rest and divest myself of the pain. I am persona non grata in a workplace full of “compassionate” care givers. It does not give one a sense of support. Yet I find myself getting used to their opinion, and second guessing my own situation. Their influence is incredible…
Thank God for a family who supports me no matter what. They do get an occasional giggle when I have forgotten something trivial….did I feed the dogs? They (the dogs) lie to me and I believe them…then wonder why the golden retriever is looking a little pudgy!! Or why did the Jack Russell poop in the house??. Mom, they say, don’t you remember? You just fed them!! That is a benign issue, but getting lost coming home the other day, at age 48, is just plain frightening and discouraging. The docs say it will get better once I am “in remission”…from what I ask, no one dare give me a diagnosis I can work with!!…Ugh! Somehow, I know you understand…
This week, I came upon your website, and I cried, laughed and felt validated. And my heart goes out to you, because I think I understand. Better yet, i KNOW you do.
I won’t bother you with more details, except to say I hope I can maintain your sense of humor and spirit. Along with your wisdom and intellectual insight. And that if I write to you on occasion, and you get a lift just a fraction of what you have given me in the last few days, I will be honored. .
Thank you for your well written, and validating blog. God Bless, Sister.
Love,
Nancy Petlon RN Dover NH.
Hi Nancy,
Your letter says so many things that are unfortunate common themes for people with RA or seeking diagnosis. I’m sorry you are going through all this and thank you for making your letter public here so that others can read and learn and be encouraged. I will look forward to hearing from you more.
Four rheumatologists is not that unusual. It’s not you. Hopefully the diagnosis will become clear soon. There are more extensive things that can be done if you have neg. blood work. Very few are skilled in it yet, but there is ultrasound of an affected joint. There is also examination of the fluid from an affected joint. I’ve even heard ofl unusual methods of diagnosis that came from non-rheumatologists when a person could not get diagnosed- like some who are diagnosed during surgery because a surgeon “saw” the RA.
wanting a life back. wow that is just something so important yet it most people would never think that a common disease like arthritis could capture. I have laid in bed at night crying, and not just because of the pain but because it is frustrating. frustrating that my doctor, family or friends dont understand. frustrating that this has happened to me so young while I watch my friends run, and bend and lift up heavy things. I am frustrated by the horrible aching coming from every hing of my body and i am frustrated becuase it has taken my life away.
This article’s title certainly caught my attention. I’m newly diagnosed this last spring, and the “I want my old life back” phrase has been my refrain in my worst moments. I of course don’t wish these feelings on anyone else, but it does help to know I’m not the only one feeling them.
You know, on the diet question, I was a jogging, mountain-biking, kayaking vegan grandmother before the symptoms of RA hit. I was familiar with the work of Dr. McDougall and many others, so when I was diagnosed, the first thing I did was begin a rigorous elimination diet in earnest faith that it would make a difference. I wasn’t on dairy products beforehand, of course, being vegan, but I eliminated nightshades, citrus, gluten, corn, nuts, and many other foods known or supposed to heighten inflammation. I was strict about it. It unfortunately made no difference to my symptoms because I have worked all my life to make sure I don’t need the kinds of medications that are caused by lifestyle choices that I could control. Neither did adding back any of the eliminated items one by one worsen my symptoms. Foods just didn’t make a difference one way or the other. I do believe that some people probably suffer worse symptoms if foods trigger inflammation, and some are helped or see their symptoms disappear by eliminating those triggers. However, I don’t believe that finding and eliminating food triggers is possible for all. Despite diligent research, strict discipline and full faith in the possibility of finding a food trigger, it just didn’t work for me. It was a struggle for me to come around from the feeling that I had done something wrong that was causing my illness to the idea that I hadn’t caused it and couldn’t correct it by myself. I’m now on Enbrel, begun when the methotrexate I took first did not work. I actually think I see some difference for the first time since this saga began, and tonight, that belief was confirmed when a friend blurted out, “You seem better. You seem like your old self.” Not like my old self, certainly, because I was putting on a good face in a social situation, but better, and I will be so grateful if I turn out to be one of the lucky ones for which a second medication regime works.
Linda – thanks for this note. I am in the exact same boat. I also did a 15 day water-fast (I highly recommend it – but did not “cure” my RA). I’ve met people who got rid of RA by changing the diet. It works, but not always. You and I are here to proof. Good luck with Enbrel.
I was wondering, did you ever had test for “leaky gut”?
Alberto
Alberto, I had no test for leaky gut to my knowledge, although my rheumatologist had been open–but not particularly hopeful–to the idea that food triggers might be found. I was just operating on the thought on my own that the leaky-gut problem might have been part of what was going on. Unfortunately, if it is, my very strict elimination diet didn’t find it. My rheumatologist also believes that with my positive ANA, high RF factor and high anti-CCP antibodies, I need aggressive treatment. I’m so anti-medication that I resisted that idea, but after much research, I came around to a different way of thinking. If there’s something I can do to avoid medication–my vegan diet that lowered my cholesterol level from 241 to 140 without medication, for example–I’ll do it gladly, but if not, I don’t want a disease simmering for years while I refuse medication. This is just my opinion and maybe not the right option for everyone.
Don’t know what I have, but can relate especially the coffee cup. Thanks for the reminder at the end.
Kelly,
I’ve only had to live with my RA diagnosis for 1 year, 1 month, 6 days and can’t imagine having to live 26 years with it as you have! Given my age — just turned 60 — I doubt if I have 26 years with RA ahead of me. But, like you, I wish I had my life back, too.
I always thought I’d be able to accept my aging process “gracefully,” which is why I never did anything to change the color of my hair as more “highlights” (as my stylist calls my gray hair) continued to be more prominent with the passage of time. But RA has imposed physical limitations on me way before I was ready for them and am truly frustrated by the way my body has betrayed me.
My husband and I went on our first cruise in 2008 and on our land excursions I was able to climb the steps of arenas in ancient ruins of Greece and Turkey; now I barely manage the 3-4-inch change of levels between the rooms in our home. I walked the streets of Rome for hours on end; now I need an accessibility placard to ensure I can park close to the entrance of stores and restaurants and a walker to support my effort.
My children and grandchildren are very aware that I’m in pain 24/7 and that I do what I can to manage it. My husband shares the care of his Mom who has Dementia of the Alzheimer’s Type with his brother. They are the only two here on Guam because their other siblings live in the US Mainland. Neither my husband nor anybody in his family seem to “get” that RA is a serious disease which limits my capabilities. MIL stays with us on weekends and when I ask him for help (break the seal on my water bottle, hook/unhook my bra … whatever) while she’s with us, he sighs (but denies doing it, even though I hear him) as though he has too much on his hands in helping not just his frail Mother whose disability is apparent but also his wife who looks healthy but seems to be unable to do much for herself. He’s more willing to help me during the week when it’s just the two of us, but he doesn’t realize that I still need his help on weekends.
Needless to say, my stress level is higher on weekends so my pain level increases and my physical limitations feel worse — UGH!!!
that sounds very tough Mary Lou. I hope you can find a treatment that makes it get easier on you.
It’s so strange how “looking healthy” can fool people about RA. When people are diagnosed with cancer or diabetes, they often look healthy too. It’s not an accurate measure of health.
Sometimes I think that it is much simpler this life I live compared to the much more complex, challenging existence I once had. I too, used to do it all…the sewing, painting, cooking, woodworking and on and on. Now all that is left of that life are the traces, a picture on the wall, that table, etc. Recently I moved. I have paint swatches in every room. Hope springs eternal! My arms ache just looking at them. I do believe in magic. Last month I managed to paint my front door. It is now the boldest, brightest, deepest shade of yellow. It makes me laugh. I seem to be the only one on this planet that likes it. The name of the paint color is forsythia. I call it defiant. Now I will think of you too, Kelly whenever I come home.
Thank you for your message Donna. A front door is symbolic, isn’t it? It can symbolize what’s in the house & who’s in the house. Mine always had a wreath. Often fresh for the season or holiday. Now it looks neglected. I won’t give up hope that somehow I will be able to get it taken care of.
Hi Kelly,
I’ve just come across your brilliant website for the first time today. I’m 28 with PA and it drives me mad – I woke up today thinking exactly ‘I want my life back’ and then remembered all the things I am grateful for and how much I don’t want to be a victim of it.
Swing therapy sounds a great place to start! I think you and Roo are onto something
Kit
welcome aboard Kit. That’s one of my daughter’s nicknames. 🙂
Kelly,
You’re not kidding when you call yourself “a Warrior” a lesser person would have given up a long time ago…but to do this for 26 years?
That’s gonna be a great testimony for others…
I totally understand. There are some moments that though they may be filled with pain, are so happy for me. It’s worth the strain of the shoulders, the pain in my hands, the ache in my back to rock my baby to sleep. I absolutely love your blog. It’s like I’ve found my own thoughts written out for me. Thank you!
Hi Hill, I love your blog too. You do a nice job of writing out your own thoughts. 🙂
Kelly, it is amazing how you touch on so many different ways this disease effects us all. I also realize how hard it must be for someone that does not have RA to relate. For the most part we do look “normal”. I’m around 50 lbs north of normal for me thanks to steroids, but people probably think I’m just fat. I would love my old life back. I am single so there is no one else to do all of the things I loved to do before. Like mow the yard, paint, etc.
I have had a problem with nausea since my ill fated bout with Sulfasalazine. Not severe, just constant. It has been close to a month since I quit taking it, wonder why the nausea is sticking around? My dr did start me on Plaquinil a couple of weeks ago. Does it take a while for sulfa drugs to leave your body? Just wondered if anyone else has experienced this.
Hi Becky, I haven’t taken that drug so I looked it up for you & called a pharmacist & it seems the sulfa would be out of your system in a day or two.
I can’t say what’s going on w/you & you should talk w/your docs about it; but personally, I have blamed meds for symptoms (including nausea) & later realized that it was actually my illness (RA, I suppose) because I went off the meds for a period & the symptoms continued.
Hope you feel better soon either way.
Thank you Kelly. Maybe it is something else. I will ask the dr when I go next month. Makes it hard to take my MTX but tonight’s the night. Wish good days for all of you!
I know what you mean. & could be the mtx too – can come and go even while your dose stays the same. hope you are sleeping it off.
Me too! Soft hugs:)
I cried when I read the first paragraph. My name is Donna Lacey and I have just joined this site. I have non-discript connective tissue disorder. I have lived with this for I don’t know how long. This winter it blew up. Symtoms reached a critical state and I have not handle it well. With the love and support of an incredible family and I am working on accepting the change. Looking forward to hearing other people’s stories.
Hello Warriors
for those interest….I just found a wonderful site for those of you that are Christians and would like to connect with other Christians suffering with chronic pain and disability.
It’s called Rest Ministries. It picks up where our churches may be lacking. The also connect with a home support group ministry called HopeKeepers.
Here’s the link
http://RestMinistries.com
Hope this is ok to share, Kelly.
Hi Nancy, I’m sorry to read of your pain and illness. I’m also an RN with RA, and your story is oh so painfully familiar. I too suddenly became terribly, terribly ill with no clear diagnosis. I went from being “the healthy one” who exercised and ate a healthy diet to unable to work. My colleagues ranged from supportive to downright mean. And as you have experienced, nurses can be shockingly unkind to their own. I had been a nurse for 25 years, but I didn’t know much about autoimmune disease and neither did my colleagues or my internal medicine doc. I finally got into see a rheumatologist, and it took almost a year to get a diagnosis, and another year to bring the disease under control by finding the right combination of medications. Life is different now, my pace is slower and my priorities have changed, but I’m finding a new balance and a new way of living, which includes shedding those unsupportive people from my life. Hang in there. Its a hard road but you will find your way too.
Hi
I went to a rhuemy the other day PC sent me my Rheumatoid factor came back abnormal.
So the rheumy said after looking me over it looks like you have a type of inflammatory arthritis just have to narrow it down to which one? There was synovitis of the hands and feet. I asked her about her about my knuckles( i cant get my wedding ring over them) she said once we get you on the good meds they may go down. they took many vials of blood and xrays of my hands and feet. she also insisted on giving me a shot of depo medrol in my bum. I go back i 2 weeks the waiting is killing me not to mention I hurt and ache my ankles,shoulders,stiff hands in the morning wrists sometimes
Hi Kelly:
I am also new to this website. It is incredible. I have had RA for over 20 years now and it is getting worse. I think I have been in remission for the last years. I have taken MTX and Sulindac & folic acid and that is it. The main problem I have is with my shoulders (mainly the left one) and my elbows. Other joints are affected also but not to the point of needing replacements. I am 53 and wonder just when do you opt for a replacement for a shoulder? I can only move my left arm half was up and that is with considerable pain. Unfortunately, my rheum didn’t help me with exercise to keep the joint limber. Maybe it wouldn’t have helped anyway.
Also, do you have excessive fatigue? If I sit down in the afternoon I can fall asleep almost instantly. I have very little energy to do anything. I work retail and am on my feet for about 7-8 hours a day and that is getting harder all the time too.
I will be seeing a new rheum this fall because the one I had since I was diagnosed has cancer and is on medical leave. I will be going to a young, female Dr. from Nigeria. I am hoping she will have some new insights for me and will help me.
Thank you for this website. I will check it often.
Carol, I’ve been off a few days. I hope you are still reading.
I think there is a lot of variety about how doctors handle shoulder joints – replacements or therapy or resurfacing. Maybe it would be good to get more than one opinion – possibly from an orthopedist. Good luck with it.
There are some posts here on the fatigue. It varies, but many are in the same boat with you. You can click on the Tags List at the top of the page to look for RA Fatigue. You might find the comments helpful.
Kelly its amazing how you can tap into what we are all feeling. I was just thinking that this weekend as I walked around Catalina Island and saw all the cool thing i would have done before this disease. all my friends went snorkeling and i had to pass because the rocks were to slick and i was afraid i was going to fall. they all went out dancing and drinking and I had to go home and go to bed because i was so tired.
I used to be the one lugging the big bags of cement and building things with my dad, then in college i could man handle large pigs and sheep ( i was an animal science and microbiology student), and saddle horses. now i cant even bathe my dog.
I have been with my husband for close to 20 years (we meet when we were 17) and even though he has been by my side this whole time he still thinks i am being lazy and that i should just fight the fatigue like he does. he does not get that its a different fatigue then just going to bed late. its a full body, sitting on the couch wondering if i really have to pee that bad or can it wait cause you don’t want to get up, fatigue.
to top it all off the dang steroid caused me to gain 65 pounds that i now have no energy to walk off…
I am so dang sick of being sick!!!!
really feel for you tonight. I actually miss lifting 50lb bags of concrete or compost! I’ll bet you’d prefer that too. I’m right there with you. I actually put this link up tonight as I had been muttering to myself something about I can’t take being sick any more…
I’m so tired I almost didn’t have it in me to post but I had to. This wonderful article made me think and cry (as I am sure most of us did). I am so sick of being sick and tired. Pain is just an everyday common occurrence. And then I get mad at myself because there are people out there with much more horrific ailments than me and I say I shouldnt complain.
Everyday is a crap shoot. I never know how it will be. I used to be like an Amazon woman – tough as nails – I’d lay my own floor, paint the house, put in a patio. Now I need help opening my coffee can. I was diagnosed one month before I turned 50 (almost 3 years ago). My husband is 15 years older than me and I am scared that when we are older I will be the one that needs the help. You are all in my thoughts and prayers.
innie my mother has HORRIBLE Ra and is basicly disabled. my father is 14 years older then her (she is 68 and he is 82) and he does take care of her, but he does not mind he says he loves spoiling and caring for his beautiful hild bride!
It will be OK…
that should read Child bride not hild bride! opps!
Kelly~ I feel it. Many of us feel it. It was hard to hold back tears. I know the “no pity” thing. It wasn’t because I felt bad for you that the tears fell, it was because I completely understood and was to relieved to see my feelings so well-put in your words. You are not alone. I want my old life back too. ~Hugs~
Ive had my RA since I was 23 and am now 61. I still want my old life back after all these years, but honestly its been so long that I dont remember what it was like to be well. I have a lot of old photo albums of my old life, but when I look at the photos of that once healthy young man,a great sadness overwhelms me and I have to close the album. I really dont remember being that agile and physically fit, but I was, once upon a time, but no more. I guess Im not tough enough and Im not ashamed to admit it. I hate this life with RA. Its a cruel disease that takes everything of physical value from you.
Thank you all so much. I am an LVN and was granted disability 3 years ago. Still feel guilty about it cause in my head, I should be working. I don’t share that i’m on disability because ” I look so good ” and just don’t want to hear the negative comments. Always afraid that ” they will take it away from me”. I can’t imagine anyone hiring me after a drug test. Even though the drugs are prescribed. During my hearing, I was told I could be a telephone operator or a copier. Really? Fortunately, didn’t have to do that. God bless you all. This site is a blessing. BTW. I tripped and had my first fall on Monday. Nothing broken, just bumps, bruises, skin tears, and lots of pain. I pray for my warriors every day.
I read this article and it may have hit me harder than many others. I am new to the site, but not to the disease. I have been fighting this for a very long time now, maybe 25 years in various forms. It is a battle and I read this and realized how tired I am. Some days I am tired of fighting and am ready to give up. Some days I don’t want to wake up because laying in bed is it’s own torture. But, Every morning I get up and go to work and not talk about it. Every day I do what I need to do to make it through. I have people who count on me. My family, my employer, people at church… They are all tired of hearing about my problems when they all have their own to deal with. So, I deal with it. We try stuff, it doesn’t work and then we try something else. Because I know that I am still here because God has a plan for me. If He didn’t, I wouldn’t be here. “I can do ALL things through Christ who strengthens me.” Thank God, it’s not through my strength, or I would have given up long ago. Stick with it, fight the good fight. Keep trying. I really feel like some people look at the medicine as a “failure”, but I know I couldn’t do it without them. I will keep trying different diets and changing with this disease of Satan, but I won’t stop taking the medicines short of a miracle from God!
First, wow…so rude! Second…are you RF positive? And third…you “success” may very well be coincidence as you may have coincidentally just gone into remission. Saying a particular diet will cure you is the same as I’ve been told on many occasions that I obviously do not trust God enough or worship enough because if I did, surely I would have been healed 23+ years ago!!! Yea, right…