Information & encouragement to fight RA
Thank you, Kelly, for your post. I really appreciate the way you explained it. I must say that I am upset with the self-definition fairy at this moment. :/
I think what has been the problem with me this week stems from having to choose what I can do in a day. My 32 year old daughter just got out of the hospital today after 4 days in the cardiac ward. It looks as though she will be fine, but she will need to change some medications that seem to be irritating her heart and making the vessels spasm. It was quite a scare. So, I have been spending almost all of my time at the hospital (which is a different hospital from where I work). Everything in me has been focused on staying with her, "being there" with her, and talking with doctors, resulting in me not taking care of myself and resting as I should right now. My body & brain are tired & fuzzy (I guess due to the methotrexate & coming down off of steroids). Part of my self-definition is to be a good parent, and to be there for my children. It is something I truly value. Will there come a day when I don't need so much rest? At some time, will I understand my limits? My character and spirit are here, but they seems to be quieted at this time by fatigue and pain.
I am so glad she is okay!!No one can pretend to understand how hard this must be for you.
Of course you did not ask for this to happen to you. Of course you want to do everything for your daughter. You ARE a good parent already!
Obviously, you are not defined by what you could not do, but wish you could do! We can all hear your heart: to support and care for your family and your patients. Your spirit is beautiful. If we can see it, so can your children. God bless you, Noelle.
Kelly, I'm stopping by for the first time and thought you did a great job with a question that is constantly on all of our minds. I was diagnosed at 11 years old, a month before 7th grade, and the beginning of my "first stage of self-definition". So, there is no doubt in my mind that who I am and how I am looked at is no doubt in huge part due to RA. I think it depends on where you are in life when you get it. For me, I don't know what I was like without it, because there was no "defined me" before I got it, just a cute little girl bopping along the golden road of childhood. As I grew into a teenager, it became the decider. It decided what I could do, what I could wear, eat, when I could hang out with friends, etc. In that way it defined who I became. Wouldn't it be interesting to know who you would be if you never got RA? -robin
It's amazing how much I had to change who I am to accomodate RA. It's an odd sort of thing because technically, I own this disease. It's mine, right? But it's like the rest of my possessions. I can't dictate how RA should act. I can't control the flares, tiredness, and pain and tell them to go. By some miracle, I am now controlling it but how long will that last? Will RA stage the take-over of yet another drug? For 37 years and 10 months I had always known who I was. But since that first symptom dropped by and RA started to rear it's ugly face, I had to redefine my self over and over. That's a lot of change in less than a year. I started to have an identity crisis! And here I am, still redefining. I think I can honestly say that who I am as a person is going to be a work in progress. A constantly changing story. I'm not sure I like that much change.
I was recently having a major melt down, both physically and mentally. I thought I just couldn’t handle this anymore. Then unexpectedly a memory of another bad time flickered across my mind. I mean BAD TIME. That was also circumstances beyond my control and changed my whole life. I started writing down how many of these things I’ve lived through and survived. Gee, I am stronger than I thought.
Kelly you are so right that, the RA Fairy does give us a short cut to our true inner person.
First I should say that I don't have RA, but I have ME/CFS and EDS and a laundry list of other acronyms which disable me so I think the effect in terms of self-definition is very similar, if not identical.
I first got sick when I was 19, in the middle of University. I had dreams of finishing my undergrad studies here in Australia and doing postgrad work in the USA in the field of cognitive science/artificial intelligence. I was really good at it! I'd finished almost 3 years worth of Uni work in 2 years and I was loving the challenge.
Then I got sick and never got well enough to go back to Uni. Managed after 4 years or so to finish my degree via correspondence but it was a huge struggle. I've never been able to work or support myself. Feel in some ways that the disease has never allowed me to be an adult – never supported myself or had a carreer, never bought a house, never married, had kids, etc. I know lots of 34 year olds haven't done many of these things yet, but I probably never will.
In other ways I feel I'm much older than 34 – stuff I've been through means I can be pretty damm wise about some things. Nothing specific to me – it's a going-through-tough-stuff attribute I think. And of course physically I feel decrepit and useless. Realising my 89 year old grandmother is more able than me is challenging!
I used to think a lot about the Ricky-who-never-was who didn't get sick. Wonder where she/I would be and such. I don't do that now, at least not much. I just be me.
A friend has been yelling that he “just can’t handle this anymore” regarding a whole lot of difficult things happening in his life recently.
I found myself thinking we ALWAYS handle those things and not handling them is just not an option. Sometimes we handle them in a way that is positive or at least useful, sometimes we handle them poorly or handle them by running away from them.
But we always handle them, and in that way we have some choices available of how we choose to handle them.
Well put, Carol. And, even when we run out of options physically, we can choose how to respond emotionally. It can get hard when you are physically more limited than you’d like to be, but the perspective you describe is more “empowering,” as they say. Less desparate. :disdain:
I have to say RA has changed me as a person. I am not the same person I was before RA. To me this was suppose to be the time in my life where my husband and traveled and took vacations and basically enjoyed life. Our kids are grown. Then little by little it was like pieces of me were changing, I was becoming a different person. I wasn’t the fun, energentic person I use to be. We would host dinner parties, visit friends, meet for drinks at different places and shoot pool. To me RA has changed me dramatically. I can no longer work, I take medications throughout the day. I can’t plan anything, due to the fact that I have no idea how I will feel that particular day. I have become depressed, I have anxiety due to wondering how I am going to be years from now.
Been waiting over 2 years now for SSDI. Been denied then appeal denied now awaiting for a hearing date. Our retirement money is deplinished. We are barely making it money wise. Medications are expensive, my husband’s health insurance wasn’t any good for me. So we have to take out private insurance. Needless to say this is not how I planned on my early 50s!! Basically broke, hurting, fatigued, stiff, showing signs of deformity in hands and wrists……….
Wow, your situation sounds almost identical to mine. I was 56 when I was formally diagnosed. Looking back over the years, there were clearly signs of starting with RA. The aches and pains were minimal; nothing debilitating until two years ago. We were also empty nesters and looking forward to retirement. My husband lost his job, due to the economy, about the time I was needing numerous meds to keep moving. I was also dealing with a mother with dementia that demanded a lot of my time. My stress level was through the roof. I figured the stress wasn’t helping the RA, so I requested my Dr. put me on an anti-anxiety med. Can’t tell you how much better I feel, mentally. I don’t lie awake at night stewing about all my problems or cry at-the-drop-of-a-hat. My mind-set has improved tremendously. I have my deformities, too, in my hands and wrists. Some things are difficult to do. My right shoulder keeps me from reaching over my head. Before Humira, my knees were unpredictable; now I can walk without struggling too much. I thank God every day that He gave me RA and not cancer to deal with. My daily challenges are to not feel sorry for myself; not to complain to other people about my physical challenges; and to live every day with a sense of humor. Life can ALWAYS be so much worse.
Deb, What a great attitude.
Sheila, Familiar themes there – I miss a lot of the social things, too. Hold on. Hopefully, ssdi will come through soon.
As much as I fought the battle to NOT let RA define me I lost. When I was in my early RA years with small children, I was determined that no matter what, I would do everything my friends did plus a little more. I kept telling myself that I would not be limited by this disease. Needless to say I did keep up with my friends (most of the time) but paid a high price for it. Instead of joining in once or twice a week and enjoying it, I wouldn’t miss anything and I would suffer in silence as I dragged myself shopping or playdates then come home, collapse and feel sorry for myself. I did this to convince myself (and others) that I was living a NORMAL life. Quite delusional isn’t it??? As the children grew so did I. I finally cut myself some slack and didn’t feel that my life would suffer if I missed a shoe sale or some other silly outing.
RA still defines me in the traditional sense of aches and pains but I have accepted this as MY LIFE and have learned to love my RA self.
Would I have chosen to have this disease in my life? Of course not. But it does define everything I do in my life and the way I do it. Even with RA, I think I have a pretty good life and wonderful friends who accept me AS IS!!!
Hard to fight something that comes along in the middle of the night like a thief isn’t it?
I guess what matters is how we look at it – you are so right – even if RA draws the lines around us for us to draw in, we can decide what color we will make it inside those lines. I still love life, too.
Kelly, what a great read! RA and Fibro tapped me on the back almost 3 years ago. I was newly married and my only child had died 2 years prior. It threw me over the edge as far as my “life plans”, and where I thought my 44 year old life was heading.
My ex could not handle a “sick woman” and left. I fell into a huge depression and wallered in self pity and questions of what did “I do so terrible in life to deserve so much.” And now, a stupid disease!
My biggest “fear” now is to commit to plans. As, I do not know what I will feel like on a day to day basis.
But, that being said…I have learned to like me, even on days when I can’t do a darn thing. I have enjoyed the solitude to reflect and write. I have enjoyed a recent move to my own apartment. I enjoy petting my pup. I have accepted that I can say “no”, not because I don’t want to, but because I just can’t…be it energy or pain.
The absolute MOST important thing that the RA Self-Defination Fairy has taught me is that I can release guilt and shame from my new lifestyle. And it is ok.
Some friends have left, but were they really friends then?
I had this situation come up early in my prognosis. My sister, a nurse, said the same thing to me. Do not make your life all about your RA. Okay, great idea…but my RA has my life in its hands. Any thoughts on how to handle that, sister mine?
My life is about my RA as it is my constraint. It is my constant companion. I can focus on what I can do, and make that my goal, but asking me to deny my RA is like asking me to deny that I breathe.
Basically, you’re asking me to ignore my chronic illness. In a word, I can’t. But what I can do is work with my body, instead of against it, learn my new normal, and try to do the best I can to be the best me I can. And that me includes my RA. That’s just a fact.
Good points about learnng to work with it, Jennifer.
And I’d like to say that if I had even 10 seconds when my RA could be ignored, I’d be really grateful for that. I don’t think anyone around me even realizes either the constancy of the disease activity or the severity of it. The can’t see it, so they just can’t understand what you said about “constant companion.” I know some patients do have breaks between flares where it’s not as bad – that makes more sense to them – so they assume it’s like that for everyone.
I’ve just had lab work done, I was told my rheumatoid level was abnormal. I’ve been living in pain for the last year+. I started taking whey protein amino acids, the stuff body builders use for muscle recovery. The stuff is working! I take one scoop of protein w/ milk in the morning and I’m good to go for the rest of the day. I’ve been ibuprofen free for over 3 weeks now and no you will not gain weight on the stuff. In the morning just before taking the amino acids my body does hurt, but the amino acids are like magic w/in 15 to 20 minutes the pain goes away. Give it a try it can’t hurt. Good luck and blesses to you all.
Beautifully written, Kelly. I didn’t have the diagnosis of RD in 2009, when this post was initially written. I was diagnosed in 2012.
You have put the experience of complete change of identity from RD in such positive terms. I just love how you’ve pictured it for us. It is so important to learn a way to accept this disease and all the changes that come along with the severe, treatment resistant form of RD. To not find a way to frame the experience positively is to settle for a life of misery – and for me, that isn’t an option.
Many thanks !!!!
Hi: I don’t think of myself of a “victim” of RA, but at the same time, there is a reality that it is a serious disease and there are things I can’t do because of it. I know I have to take my meds. That’s real. I have to rest more now and some days I feel lousy. Reality. I love the way people who don’t have RA make up these rules. I don’t “define” myself by the disease, but RA is now part of who I am and I can’t change that.
Kelly, what you have written really resonates with me. I have often thought that RA has made me a better person. I used to move at a rate of speed that left me skimming across the surface of life—never stopping to appreciate the depth. RA has slowed me down, taught me empathy, and helped me to appreciate the little things, like birds in the bath out front and neighborhood kids playing in the dirt laughing the whole time. I haven’t exactly made friends with my constant companion, but I have learned to see the value in the changes.
Thanks for your wisdom, Kelly.
I have shared before how RA resulted in the end of my marriage – not because of the RA, but because it brought to the forefront how mismatched my ex and I were – I had married for love, he had married for (my) money – and when RA threatened that, he booked. He used to try to disparage me by telling me I “embraced” RA…as if by educating myself and focusing on my diet and going to the doctors I had brought it upon myself. Reading this website was an example of “embracing” this illness. For me, it has defined me by teaching me what and who is important in my life. The friends who are authentic people have stuck by me – those who were using me for what I could do for them disappeared. While seeing the wheat separate from the chaff was initially shocking and disappointing, I’ve learned to be SO grateful for this “shortcut” to a more authentic life.
It’s hard not to be defined by RA because it affects us at so many levels. Knowing I can’t do everything I used to do (in terms of exercise, working around the house, stuff like that), nor can I do everything I want to do now. I sometimes, well ok often, resent that. Expectations get lowered. Things take more time because I have to rest more often, or work until it hurts so much I have to stop all the while knowing I will pay for it later with more pain. Learning to pay attention to how I hold onto things, or lift and carry them, or hold the steering wheel, little everyday things that remind me that I have this disease. But then, I see my coworker with ALS, and how far that disease progressed in a very short period of time (we’re the same age, too), seeing his very positive attitude in what is a very tough prognosis, and it puts my struggles in perspective.
SIGGHHHH THANK YOU so much for this! I have been trying so hard to not identify with RAD that I have done more damage to myself by denying it’s existence. I have worked with the belief that anything can be healed. The body heals itself. But I forgot about my mind. lol and other things. I am constantly changing and developing as a human, mom, healing facilitator, mentor and friend. RA fairy…brilliant. Thank you
I keep revisiting this post. I have to say – you have to be in a position of great privilege to look at it like this. You have to have a support system, people who can take care of you, you have to not be in danger of losing your home because of no longer being able to work. Personally, I was just recovering from the previous “poof” when this horrible economy spit me right out. I’ve worked hard for several years to regain my footing and figure out how to make enough money to feed myself, and now that’s being taken away. It’s not a blessing by any definition.
In battling this disease called RD – I am still struggling with how to respond to others. I just started Rituxan infusions. My foot today has been hurting so badly I can’t put weight on it at all. I was asked could something else be causing the pain in your foot? Well, I guess anything is possible – but I have shown the bony protusion on the inside of my foot to my rheumy. Then when I feel horribly debilitated, tired and just overall miserable, I’m told other than your RA results, your blood work is stellar. My hemoglobin is low, my kidney function is high, my sed rate and Vector scores are high, my CCP is >250, etc. I am told methotrexate is NOT chemo. Is it chemo? I was told that chemo was used in conjunction with the Rituxan. I’m using MTX – it is just a constant challenge to know how to deal with this disease as well as other people. I am thankful I don’t have cancer – and I try to be positive in attitude. However it sure would help if people would just understand. Thanks for listening….sometimes that is all we need – just someone to listen and care.
I’m so worn out with my definition of RA. If I talk about it people think I’m whining or looking for sympathy. They have issues and I listen and try to help. I think they are so worried they just put themselves in denial or some just don’t care. I go about my life not speaking about it. I’ve been invited here and there and if I can’t make it they get mad at me. My own sister won’t educate herself. If I try talking to her about it she gets so mad at me. I tell her I would love to work. She says volunteer someplace. You can do that. I tell her I won’t be able to know if I get in pain so I’m unreliable. She doesn’t accept that and thinks I’m just looking for sympathy! I’m worn out with all of them and myself. Tried going to Florida with my husband and stepdaughter. Such a mistake. We were going on a boat we rented and I wasn’t moving fast enough for her so she starts pulling me by my arm and yelling hurry up! We came home early! So we just put it on the back shelf and don’t talk about it. I’m so worn out! Thanks Kelly
Everyday Rheumatoid Disease defines what I can do physically, but does not define the person inside. For me, it’s not an invisible disease because it is very obvious something is wrong. I find that people, including doctors and health care professionals constantly try to define me. I’ve been at this since I was 16 and now I’m in my fifties. For example, I’m interviewing new physical therapists and actually had one tell me that I was going to have to learn how to put up with pain because it would be painful! I looked at her and said then you have no idea what you’re doing in dealing with someone that has rheumatoid disease,we are experts at living with pain! Of course I left.
Pain has been such a part of my life that I thought it was normal when I was younger. Now it’s a good day if I can get out of bed,feed my fur babies and go to work. I work full time but take a lot of time off for my flares. My vacations consists of trying to get some rest and recuperate. The traveling part of my life is over and very sad because I really love to travel. I have turned down so many opportunities. The last trip I took my traveling companions (family) lost patience with me, they are used to the adventurous me that did all kinds of physically challenging things not the me that needs mobility aids.
My physical life has completely changed but my spiritual life is actually better.I find joy in just being, and love to spend time alone even more than I did when I was young and fit. I still get out and do things but it takes so much managing. If I go one day the next has to be rest. So,yes I allow some people to define me physically, but I am doing my best not to let them define my spirit.
So very grateful for this piece that articulates so well my personal experience as I navigate daily this new way of Being in the world. Diagnosed three years ago I continue to make peace with the gift of the RD Fairy. Thank you for such understanding.
Many things define me, RD defined me, being a mother of a son with autism, depression, generalized anxiety disorder, and many other things. But for better or worse these things have made me what I am. But their is a core me that is unchanging. This me is made better or worse by how I let these things change me. It is by remembering me that I can survive the hard things.