Why I’m not Fighting Rheumatoid Arthritis

I have Rheumatoid Arthritis and I’m not fighting it. I’ve posted updates for y’all to read and to see at various times, and I’ve worked hard to assemble a team of physicians that can help me get into remission.

I’m not in remission and I’m not fighting this thing.

I’m in pretty good shape these days. I come dangerously close to actually making a fist with my right hand and yesterday and today I was able to run in the canyons without needing narcotics afterward. That is a huge improvement. I haven’t opened a bottle of Advil in several weeks, my energy level is mostly high, and steroids aren’t a part of my life any longer.

Still, I have symptoms and discomfort. I have swelling and some numbness and tingling. If it never progresses past this point this is Arthritis I can live with. Sadly, it’s improbable that I won’t see some progression unless the medicines get this into remission.

You see the medicines are the ones that need to fight the arthritis, not me.

I know everyone loves to fight their diseases and Fuck Cancer is a wonderful sentiment. Recently I was with my friend Becky who had been treated for cancer and she explained to me how much she disliked people talking about her “fight”. She talked about the people who had cancer but died, is that because they didn’t fight hard enough? Were they not strong enough? What if your cancer is just deady like the pancreatic cancer that killed my Grandmother? Was she not up for a fight?

My children have a mother with RA, which is an autoimmune disorder closely linked to leukemia. Of their four blood grandparents three have, or have been treated for, blood cancers. Should I raise my children to be fighters just in case? Please understand that my single greatest fear is that Jane or Alexander will have one of these disorders. It’s a fear so overwhelming that it wakes me up at night, I feel cold like I’m dead and like cancer is just sitting on my chest like a ghost from a cartoon.

I’m not a physician. I’m not a scientist or a researcher. I’m a 41 year old woman with a debilitating diagnosis and an overwhelming desire to see her children remain healthy. I’m not fighting arthritis. I’m living with it, and I plan on living nicely. If my illness is to progress I wouldn’t want to be made to feel like it’s because I didn’t fight hard enough.

 

Facebook Comments

Comments 18

  1. I live with it to.I can lift a child out of a crib and not use my hands but my arms. I can do many things most people take for granted.I can NOT do alot of thing people take for granted but you know what…I live every day to my fullest and I live like tomorrow will never arrive.RA sucks and so does Lupus but I ry to have the attitude that it will not win.

  2. That is a great outlook. Of course you are living with it and dealing with it. I like the word ‘fight’ because I never feel like my doctors do enough. Is that my fault for not getting the best doctors? Or not having the best insurance? It could be.

    Sometimes I think it’s because I don’t listen enough. I need things written out for me. Which is why I often go to Dr Google. The past three years I have FOUGHT to figure out what was wrong with my body. I call it a fight. It was long and brutal. I saw doctors, naturalpaths, an acupuncturist. I bought meds online, went on crazy diets, and did very strange things.

    It ended in a final diagnosis of Crohn’s Disease, which is also an autoimmune disease. Am I fighting now? No. I am freaking happy I finally figured out what it is, or close to what it is. Strangely enough, some of my fight before I got to my final doctor, helped my body out and kicked the main symptom. I am not taking any medication for this now (I will probably have to later) and I am feeling okay. So, yes, I am living with my disease by monitoring my food intake. I know certain foods that trigger my symptoms. It’s not an active fight right now.

    Is it a fight? Or am I just living with it?

    I think it’s a fight for me. If something goes wrong, I will be investigating what I can do to make myself feel better. I will be going down every exhausting avenue to figure this out.

    My kids have bowel issues as well. They are actually on over the counter meds to help them (Miralax and mineral oil). I think we fight for them because the amount of freaking work we do to balance the meds on a daily/weekly basis is crazy. We are constantly adjusting it. Adjusting their diet. Making sure they don’t eat junk and get in high fiber. The doctors don’t help enough. We are present on a daily basis to help them figure to make their body work.

    “She talked about the people who had cancer but died, is that because they didn’t fight hard enough? Were they not strong enough?”

    They just didn’t win. They may have been strong but they weren’t strong enough.

    What a novel, sheesh. I think you hit a strong point for me. :-) I have a relative that has the same type of problems as I did. I told them what I was going through. I gave them suggestions. (I feel) They half-assed it and continue to suffer. Do I feel like they could have fought harder? Yes.

    Maybe for me it’s more of an information game. If you come up to a wall and can’t move forward, you have to live with it. In the problems that I have personally come up against, I have researched and found solutions to help me. The time and effort that I put into it has shocked me. I say I fought and fought hard.

  3. This post has given me a lot to think about. I know so many people who are dealing with cancer, arthritis, obesity, eating disorders, hormonal imbalances, alcoholism, and asthma. I’ve always considered them fighters, just because they get up and deal – beat their diseases into submission, breathe in and out, and live their lives. Aren’t they fighters? I know I felt like one, when I beat anorexia, and when I overcame the bad days with osteoarthritis. But friends and family of mine, whose diseases killed them, they were fighters, too. They didn’t lose because they didn’t fight hard enough. They lost because science, genetics and circumstance weren’t up to the challenge. They didn’t have the weapons they needed to win those battles. I’m really hoping that if my kids ever have to fight this fight, their arsenal will be unbeatable.

  4. I see it a little differently – fighting a disease or illness of any kind means that you’re not giving up and letting it take your life away. It means you are working with doctors and treatments and even positive thinking to keep hold of your self. I’m glad you’re living with it and dealing with it, but I have a feeling that if push came to shove, you’d fight your ass off if you needed to. :)

  5. Rheumatoid Arthritis can effect your internal organs…my RA just returned with a vengeance. I treat because I don’t want the organ involvement. God Bless you!

  6. Years ago I was diagnosed with Fibromyalgia and I fell into that mindset. For two years I fought it – I read all about it, took the medications, went to physio. It consumed my life and I started to think about everything in terms of the illness I had. I gave up very important plans to go to medical school because I had this syndrome and it was important to beat that first.
    And then one day I decided I was sick of fighting. I had two options left: kill myself or kill the fight. And I kinda liked myself. So I quit fighting. I quit thinking of myself in terms of what was wrong and how I had to battle it. I just lived as healthy a life as possible. And within a year I went into remission and haven’t had a flare-up since. There are days I doubt I ever even had it. And there are days I fear it’s coming back. But coping with the symptoms and forgetting about their cause has made my life much happier.
    So I completely understand.
    Our body acts in strange ways and if we can be at peace with it – and it’s failings- then we can thrive. All the language involving disease and disorder is geared around this fight mentality. We succumb; we lose the fight; we are overtaken. It does make out those who die or experience radical life changes due to disease out to be losers who didn’t fight hard enough.
    Sometimes instead of raging against the dying of the light we just need to turn our heads to another light source.
    I’ll quit blathering on now, but it seems to me, Jessica, that you’ve put yourself in the healthiest place you can. And with regards to your worries about the children: the fear is born the moment they are, with or without just cause we will worry and fear and want everything to be perfect for them. Your mother felt the same way about you, I’m sure. IF your fears are justified they’ll have been lucky enough to have a great role model.

  7. I like the perspective of living with the disease. I believe that’s how my mother and her sister both dealt with their respective autoimmune disorders – neurosarcoidosis and rheumatoid arthritis.

    I can also see the perspective of fighting it. Not the disease itself but the mental battle of keeping your emotions from becoming overwhelming. My mom went through periods of depression off and on for many years. She didn’t technically have a disease (neurosarcoidosis) that was life-threatening, but it was incredibly debilitating. She was forced to retire in her early 50s.

    Through it all, she fought a mental fight to stay positive and hope that her plateaus would last longer. She had a long plateau of a year and a half that, when it ended I do believe she got tired of fighting. Did she fight hard enough? Without a doubt in my mind she did. So does every other person who “fights”. Does everyone have to characterize it as a fight? No. I think the words don’t really matter. It’s all about living the best life you can with what you’re given, IMO.

  8. I see fighting a disease as also living with it but not giving in to it. My mom had Ovarian cancer stage 3c and was given 3 years, she lived with it for 10. Her decision to fight gave her 7 more years with us. It was a mental fight as well as a physical one but she tried everything and during those 10 years she had 3 remissions. Maybe fight is not the right word for it because one thing I know my mom did not like the use of was ” people who lost their battle” with a disease. She really hated that because it made her feel like the disease won in the end. She wanted people to see the true victory was surviving all those years with the disease, not the final outcome. There is a grace to accepting a diagnosis and living with it. But for me seeing my mom never give up hope that there could be more moments she would experience, never quitting the treatments, the hospital visits, that for me in my opinion is something to be admired, in my eyes she is a champion.

  9. My mother was diagnosed with stage 4 advanced metastatic breast cancer at 44 year old. I was 21 and her primary caregiver. For nearly 4 years, she decided to live, to the best of her ability and with a dirty joke and a smile on her face. She WORKED until 6 months before she died, when it became necessary to perform radio-neurosurgery. This after numerous rounds of chemo and radiation. I don’t know that she’d have called it a fight, but some days it WAS one – not necessarily against cancer, per se, but to get out of bed in the morning.

  10. Great post explaining how you are dealing with RA…I agree that the word ‘fight’ connotes a certain meaning but for me it is a metaphor…. Some times people with cancer need to picture chemo fighting with the cancerous cells somewhat like game of pac-man it helps them to create a positive mind-set which may elevate their immune system to help ‘conquer’ the diseased cells.
    I guess it is whatever helps the individual be the best they can be…and reach their maximum health potential that counts.
    Thanks for sharing your thoughts. It has given me yet another perspective on how patients deal with chronic illnesses. This is so helpful to me since I am a nurse and a social worker who works with people who have End Stage Renal disease.
    Good luck to you and your family.

  11. One of my biggest fears is getting RA like my mom & grandma had. My grandma was confined to a wheelchair for most of her life because of RA. I already have psoriasis which is also an auto-immune disease (thanks, dad) so I fear that this could turn into something worse, including psoriatic arthritis. But the fears that stop me cold are the ones of my daughter inheriting any of the myriad of diseases and cancers than run in her family, including a horrible form of diabetes that killed her grandmother & great uncle on her daddy’s side.

    I wish I could stop being afraid of these things, but it’s not possible. But should any of these things befall myself or my amazing daughter, we will let the medicines do their job and live the best we can while still advocating for our health (that’s where the fight comes in).

    I hope your medications work well for you and you get to enjoy and live your life to the fullest.

  12. Brilliant food for thought. Our illnesses are our teachers and we can choose to “learn” rather than fight. I consider myself in dialogue with my RA/Fibro, and some days they talk too much and too loud. Other days I’m fortunate they quiet down and listen to what my doctors have to offer and what my body can provide in the way of rest and acceptance. It’s a conversation. I try to keep my end civil.

  13. How much of a try have you given to proper dieting and nutrition, and anti-inflammatory foods such as ginger? Although it may not be a solution with the severity of your condition, it may help a little.

  14. EXCELLENT article!

    I agree with your sentiments exactly!
    I have RA myself and “fighting” it require too much energy and becomes all encompassing. My wife alerted me that every conversation would find its way back to RA somehow. So I finally GAVE UP; best thing I have done in years. SO now I am looking forward to finding a new way to earn a living if I can or be at peace with my “fighting” workaholic mindset that makes RA worse. We were NOT fighting a bully we were fighting ourselves. The more you push against RA or try to push through it; the more it pushes back which is a very hard lesson to learn and a painful one, I might add.

    My dad recently lost his “fight” with one of the most aggressive forms of cancer known to man. Does that make everyone that loses the “fight” a loser??? I HARDLY think so, as he was taking care of my disabled mother til his last few days, all by himself, with a collapsed lung.

    Rather than “fight” which makes people hostile, sometimes; we should encourage people to do their best to LIVE their life even if it is shorter after a diagnoses or not as active. Most excercise is out of the question for me and a lot of other activities; but that does not mean I do not LIVE. My children’s smiles are even brighter than they were before…maybe because I have more time to see them…and maybe because I watch them live rather than “fight ” a war with some disease. Tactically speaking we often WIN a war by NOT fighting it…sometimes a “cold war” is better waged than “fighting”.

    Of course you take your medicine and hope for the best results; but also prepare for the negative and how you will continue to enjoy a LIFE, come what may; rather than just get discouraged at losing the “fight”…roll with the punches. :)

  15. Pingback: Why I’m not Fighting Rheumatoid Arthritis,drug abuse treatment program – FactsonHealth

Leave a Reply

Your email address will not be published. Required fields are marked *