As I wrote the title of this post, I tried not to laugh. My rheumatologist teases about how close I am to remission but I have been close for a while now and generally my symptoms get worse, not better. The research I continue to read on remission reports that at least 30% of RA patients do go into remission and generally these are the people with the mild to moderate form of the disease. That is the category I am in right now with a moderate form of RA. My rheumatologist brought the remission idea up at my last appointment. She said that if you have 15 minutes of morning stiffness and no tender or swollen joints for at least three months, you would be in remission. However, those short periods of no more than 15 minutes of stiffness and no tender and swollen joints have lasted no more than a week. I always end up going backwards.
According to Désirée van der Heijde, MD, a professor of rheumatology at the University Hospital Maastricht in the Netherlands, today’s newer treatments along with more aggressive use of older treatments such as methotrexate, nearly half of the people with RA can – and should – achieve remission. For most of us with RA, it seems that the chance of remission is unlikely. When I think of the idea, I think of something that lasts more than a few months and I don’t see that happening for me.
Here is the other side of the coin. So, if someone achieves remission from rheumatoid arthritis, how is it remission if they continue to take medication for the rest of their life to stay to keep disease activity from returning? I read somewhere that if a person stays in remission up to one year, drug free remission is possible. For those of us who have been taking medication to treat rheumatoid arthritis for quite some time, (years, in fact) we don’t see this being a possibility. If the chance is remission is similar to the chance of being struck by lightning, then drug-free remission is like finding the Holy Grail.
I know that this may sound a bit silly but for me, RA is part of who I am. I have had it for so long that I don’t know how to be without it. It has changed my life so drastically that I can’t imagine being the person I was before RA came into my life. I am not saying that I wouldn’t mind going back to living without pain but there are other things that have happened since my diagnosis that I don’t want to change. It is also part of my identity and while I know that I would evolve with the change should I be as lucky as remission, it is hard to see myself any different than I am now. I wouldn’t mind my life being easier but I am not sure what that would be like. Feeling the pain of RA reminds me that I am human and that being human means I feel pain.
In the beginning, I just wanted things back to the way they were before RA. So, here are I am almost four years after receiving a diagnosis, and this is how things are now. There is no back before RA because that is long in past. I have found my comfort zone and I am okay where I am not. A life without RA symptoms and pain is a small possibility but the reality is that either I stay where I am at or get worse. I have not really considered remission because it is probably like my law school dream. It will probably never happen. And you know what – I am really okay with that – no remission and not going to law school. RA took so much from me but it also allowed me to become someone that I would be proud to know. The person I was before RA took so much for granted.
Speaking of taking things for granted, my younger sister that had the fire called Monday and told me that they found a new place to live. She told me up until that fire, she had taken so much for granted. She didn’t realize that her possessions were merely things that were replaceable. What is most important isn’t replaceable and for one moment, she had completely lost sight of that. Rebuilding your life is a process that often times comes from a life changing event you never imagined. Whether it is a fire or an illness; it is all the same cycle and process. Once you get past the initial shock, you can work towards rebuilding your life.
I am set to move to my new place on January 31. I am ready to move forward and past the reasons why I never felt at home where I am currently at. Many years ago, I was laid off from a job I loved very much. I was a single mother trying to make ends meet so I took the first job offer presented to me. That job never felt like a place I belonged. I never found it in me to put up pictures of my kids or to bring in items to add to my workspace to make it feel like my own. Needless to say, I only stayed there four months before I took another position. Moving to my current place kind of felt like that. That annoying property manager didn’t help either but here I am moving to a new place that I am certain I can call home. I really feel good about this. I made arrangements for the movers and contacted the utility providers. Boxes are packed and more will be packed by Monday evening. I feel like this is yet another chapter in my life I am ready to put behind me. I am moving on. With or without you, Remission.
Since I started at Blogger, it took me two years to pull together an “about me” section which I have now moved here. When contemplating about writing an “about me” section on my blog that would talk about my diagnoses and the effect that they have had on my life. Every time I start to type, I am not sure what it is that I want to say. I just know that what I have to say has to have a profound effect on those reading the words and having all the same questions that I have had for some many years and even the questions that I still have.
When I was enduring a variety tests and looking for answers, all I wanted was closure and that meant an answer for what was going on inside of me for so many years. At some point, I thought it was normal to feel sick everyday of your life because if it wasn’t normal, then it would mean that I wasn’t normal. After years of misdiagnosis, mistrust towards so many medical providers and frustration at the lack of answers, I started to wonder if what was wrong with me was all in my head. It took time but eventually the answers came.
From the day that I received my first diagnosis, rheumatoid arthritis, I promised myself that RA would not win. A couple months later, I was also diagnosed with fibromyalgia. In beginning, I went through a variety of emotions: Fear, denial, optimism, frustration, numbness, and skepticism. My emotions would change several times day and hope and acceptance were a long ways down the road. In beginning, I thought that I would fight the inevitable but it didn’t take very long for the diseases to win. I became depressed even though I insisted to everyone in my life that I was not depressed and I kept going on because I had to. I leaned on my love and dedication to my children as my coping mechanism. I knew that no matter what I was going through I still had to be their mother.
The years of trying to find answers taught me and gave me patience, dedication, strength and survival. I don’t know who I would be without that experience. So many times in my life before RA and FMS when life handed me lemons and I always threw them back. With RA an FMS, I can’t throw the lemons back because it doesn’t work that way. I just have to keep reminding myself that the lemonade will get sweeter with practice.
Steroids, a lack of energy, and physical pain take a toll on you. I stopped stepping on the scale because I am tired of the weight gain. I stopped visiting friends and family who think that my conditions are simple and that I am just being a drama queen. I stopped trying to be perfect, having an impeccably clean home, and trying to be everything to everyone. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. I am not saying it will ever be easy but it is what makes us exceptional.
I can no longer carry my toddler and sometimes, it takes a lot out of me to make it into work every single day. There are nights where I lie awake staring at the ceiling whispering and repeating the words “I am in so much pain” until the sleep finally consumes me. I didn’t invite RA or FMS in my life. They just showed up one day and never left. I used to be a planner and my diseases ruined any plans that I will ever have. When I was pregnant with my now toddler, I scheduled the induction the day after I started my maternity leave because I wanted to spend as much time with my kids as I could before I went back to work. I refused a C-section when it looked like things weren’t progressing because it would ruin the “plan,” and now, I don’t make plans. I just live for the moment and if there is anything I hate more than the unexpected, it is disappointment and failure so I stopped planning. If I have to live side by side with my conditions, I have to understand that I cannot always win.
Imagine being a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. Of course, I wanted closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me so that I could gain some normalcy back into my life now that I had some closure.
One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too.
My blog is about who I am, my struggle for answers, and how I have made lemonade. I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FMS may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worst than the physical but we all struggle with something and for me, it is RA and FMS.
I am the patient advocate for two Alliance Health online communities, Arthritis Connect and Fibromyalgia Connect. It is something I am very proud of and I ask that you join me so that you can find answers and give support to others who have a multitude of questions.
I so love the way you describe remission and how it plays into our ra lives. I really believe that there are so many out there with ra for whom these rules decided and written by doctors do not apply. I believe they were devised to sell the tnfs, the dmrads, the meds that pull in the big dollars for investors. But for the real raers out there, remission is something we re led to believe can happen. And maybe because I was diagnosed with the severe ra form, I have never achieved this mysterious beast…remission. It has been like a ghost haunting my life. I gave up on remission years and years ago and I am now so much more mentally and emotionally and even physically able to cope with the ups and downs of ra. Instead I have choosen to put what energy I have every single day into living my life instead of hoping and wishing for remission. Loved this blog post. Thank you for sharing And good luck on the move. That Jan 31 is a special day for me so I am hoping it will bring you lots of luck and good fortune in your new to be home.
Hi Deb, Thanks for visiting. I think that so many of us with RA wonder if remission actually exists. We also know what the possibilities are for us. I hope that Jan 31 is a good day for us. Thanks.
I’m not convinced that true remission from RA exists. Clinical remission maybe, after 8 years, I would be very happy with clinical. Like Deb, I gave up on it also and just live in reality. I hope the upcoming move will be kind to your RA.
Terry, I personally believe that there is a point where remission possibilities become less likely. I honestly haven’t given up but my hopes are tiny. But you are right about live in the present and with the current reality – that is all any of us can do
You are not kidding that we are blogging about the same stuff right now! Thanks for your thoughtful comment on my last post – I responded to it on my blog. And thanks for the hopeful thoughts about motherhood, I really appreciate it. Nice to be “talking to” someone who has already gone through RA and pregnancy. ~;o)
Thanks for stopping by Mariah. Yes, I did see your comment under mine in your post. Hopefully, you don’t deal with what I dealt with after delivering but be prepared with your support system just in case.
Lana, my RA has been diagnosed as severe, yet according to the guidelines from your rheumy on remission, I am almost there! It is possible. I was diagnosed with RA in 2004 and experienced a short remission a few years later, came out of it, and now I am experiencing it again. This may just be my sunny side of looking at the world, but I believe anything is always possible. During my worst days I didn’t see myself returning to the me before RA as I know I will never be that person again, just as I will never be 22 again. We move on and that is good. Yet, I always visualized myself healthy, even when struggling to get out of bed alone.
Lana, good luck in your new home. You have had so many challenges over the last year that I hope finding “home” will give you a chance to let your body feel some calm.
So how does one keep up the fight? You take it one day at a time. You get up every morning hoping that today is better. You don’t stay in bed and think hopeless thoughts. You live for today, you do what you can and you don’t allow yourself to worry about things getting worse. Be thankful for all the things you have rather than what you don’t have. Strive for the strength and courage to accept chronic illness with self-respect and humility. Take care of yourself and those who love you and support you. Enjoy the beauty of today and don’t spend your days worrying about tomorrow. This is all you can do and this is all any of us can do. From Do I Ever Feel Sorry for Myself? READ MORE. http://livinglifewithraandfms.wordpress.com/2012/01/27/do-i-ever-feel-sorry-for-myself/
Rheumatoid Connect is a social network that empowers people living with rheumatoid arthritis. We make it easy to start conversations, share treatments, read and post product recommendations, and much more.
The Law of the Garbage Truck
Many people are like garbage trucks. They run around full of garbage, full of frustration, full of anger, and full of disappointment. As their garbage piles up, they look for a place to dump it. And if you let them, they’ll dump it on you. So when someone wants to dump on you, don’t take it personally. Just smile, wave, wish them well, and move on. Believe me. You’ll be happier. David J. Pollay
Check out my article “What does it mean to accept your chronic illness diagnosis” at Invisible Illness Week.
Disclaimer
Disclaimer: This blog is a personal blog written and edited by me. Nothing in this blog should be taken as medical or expert. I am not a medical professional. Any information presented on this blog or related endorsement is for educational, informational, and entertainment purposes only. You should never consider any of the information presented here as a substitute for consulting with your physician or healthcare provider for any medical condition or concern. Any information presented here is merely general information. It is not medical advice, nor is it intended as advice for your personal situation. Please consult with your physician or health care provider if you have concerns about your health or suspect that you might have a problem.
I so love the way you describe remission and how it plays into our ra lives. I really believe that there are so many out there with ra for whom these rules decided and written by doctors do not apply. I believe they were devised to sell the tnfs, the dmrads, the meds that pull in the big dollars for investors. But for the real raers out there, remission is something we re led to believe can happen. And maybe because I was diagnosed with the severe ra form, I have never achieved this mysterious beast…remission. It has been like a ghost haunting my life. I gave up on remission years and years ago and I am now so much more mentally and emotionally and even physically able to cope with the ups and downs of ra. Instead I have choosen to put what energy I have every single day into living my life instead of hoping and wishing for remission. Loved this blog post. Thank you for sharing
And good luck on the move. That Jan 31 is a special day for me so I am hoping it will bring you lots of luck and good fortune in your new to be home.
Hi Deb, Thanks for visiting. I think that so many of us with RA wonder if remission actually exists. We also know what the possibilities are for us. I hope that Jan 31 is a good day for us. Thanks.
I’m not convinced that true remission from RA exists. Clinical remission maybe, after 8 years, I would be very happy with clinical. Like Deb, I gave up on it also and just live in reality. I hope the upcoming move will be kind to your RA.
Terry, I personally believe that there is a point where remission possibilities become less likely. I honestly haven’t given up but my hopes are tiny. But you are right about live in the present and with the current reality – that is all any of us can do
You are not kidding that we are blogging about the same stuff right now! Thanks for your thoughtful comment on my last post – I responded to it on my blog. And thanks for the hopeful thoughts about motherhood, I really appreciate it. Nice to be “talking to” someone who has already gone through RA and pregnancy. ~;o)
Thanks for stopping by Mariah. Yes, I did see your comment under mine in your post. Hopefully, you don’t deal with what I dealt with after delivering but be prepared with your support system just in case.
Lana, my RA has been diagnosed as severe, yet according to the guidelines from your rheumy on remission, I am almost there! It is possible. I was diagnosed with RA in 2004 and experienced a short remission a few years later, came out of it, and now I am experiencing it again. This may just be my sunny side of looking at the world, but I believe anything is always possible. During my worst days I didn’t see myself returning to the me before RA as I know I will never be that person again, just as I will never be 22 again. We move on and that is good. Yet, I always visualized myself healthy, even when struggling to get out of bed alone.
Lana, good luck in your new home. You have had so many challenges over the last year that I hope finding “home” will give you a chance to let your body feel some calm.