Rheumatoid Arthritis Breaks Your Heart | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Breaks Your Heart

RA breaks your heart watermelon

Straight talk on Rheumatoid Arthritis

I used to say, “Rheumatoid Arthritis is not in your head; it’s everywhere else.”  Then I realized that for some of us, it does get to the head. Specifically, RA gets to the jaw joints and the eyes. So technically, my Rheumatoid Arthritis is in my head.

So, I started to say it like this: RA is not in your mind; it’s everywhere else. But, lately I think I have changed my opinion on that, too. Rheumatoid Arthritis might actually change the way we think. Remember my very first post, RA can make you patientBut perhaps it doesn’t stop there.

Rheumatoid Arthritis can also break your heart.

My heart is broken by what I hear and read from other RA-ers who either post their own blogs or write private messages to me.

I have heard the ache of women who want to have children but live on medication which prevents that. Countless young ladies have told of their distress over aging much more quickly than they had planned. There are troubles with bosses who don’t understand and long-planned careers that have washed down the drain, courtesy RA. Of course there are the myriad beloved activities we are forced to curtail.

But the most heartbreaking tale that I hear is about family members who do not understand how Rheumatoid Arthritis changes the rules of the game. Women tell me they are accused of having “grown a lazy bone.” Men are distressed because their families cannot accept a lowered physical output with childcare or chores.

That is the dismay of living with an invisible illness.

Pain is invisible. Stiffness and muscle weakness is invisible. One man wrote that his wife could not be convinced that his pain is very bad at all. Numerous women have told me that their husbands criticize them for their lowered standards. Just today, I read a woman’s comment about her grown son complaining of how little she can do for him now.

My heart is especially heavy for one person who may actually be divorced because of becoming disabled. This disaster is, one man or woman at a time, as bad as any I have watched in the news. It is no different than watching hurricane victims lose their homes. The suffering is just as real. But the sympathy is not.

My heart has become as sore as my wrists and hips and knees…

More than once, I have heard it suggested that we could expand understanding of Rheumatoid Arthritis if we could only loan it out once in a while. If we could let our spouse borrow it for a day, would s/he “grow a sympathy bone”? I know it is said in jest (well, probably it is), but I think there is a nugget of truth there, too.

Could it be that living with Rheumatoid Arthritis does affect your heart? For so long, I was perplexed that RA seemed to affect the nicest people. Maybe it was the other way around all along: the long term suffering of Rheumatoid Arthritis breaks our hearts. It makes us into more compassionate people.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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43 thoughts on “Rheumatoid Arthritis Breaks Your Heart

  • July 2, 2009 at 7:14 pm
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    I am missing something..watermelon?

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  • July 2, 2009 at 7:46 pm
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    It is extremely difficult to get this invisible disease understood by someone who hasn't the foggiest notion as to what it is like, living with consistent pain 24/7.

    On the other hand, I happen to be luckier than most. My mother's side of the family all have one form of arthritis or another in addition to fibro, and I myself got the double whammy of rheumatoid and fibro. So my mother knows what this is all about.

    And even though it's unfortunate, it is also a blessing that my wife also has the identical double whammy. The good days are when one of us needs help and the other can provide it. The bad days are when both of us need help and we're unable to help each other, much less ourselves.

    I have three people that do not understand this disease: My stepson and his wife, and my stepfather. They say they understand, but you can tell by the looks they give and the look in their eyes that they both do not understand, and have placed blame… As if I actually conspired to hurt 24/7. It's infuriating.

    I wish I knew of an easy way to show people just how bad this can be. The only thing I can think of, is that self torture chain that some people wrap around their thighs… as a form of penitence. You can only describe the sand, icepicks, red hot rivets, or any other simile that you can possibly think of, before your just too tired to give a tinkers damn what they think anymore.

    So yes, it does affect the mind. Consistent pain that nothing gets rid of drains the psyche of the necessary mental stamina.

    I could go on, but I think I'll stop short before I end up going into an utter rant.

    Nice post. I can so relate.
    ~ Jonn

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  • July 2, 2009 at 8:04 pm
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    Thank you for your thoughtful comments Jonn,

    I guess it would not be as effective as the tortures you described, but I know a good blog your family could read to start getting a clue. 😀 Haha.

    I cannot imagine both you and your wife being affected at once.That is incredible. God help you both. And like you said, at least she understands…

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  • July 2, 2009 at 8:07 pm
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    Thanks for your comments. I've felt RA in my heart this week. As some of my family are visiting this week, it's been interesting to see and hear their reactions to my RA. They said things, supposedly in jest, like "it's all in your head", "just suck it up", "everyone has arthritis", etc. They can't seem to understand why I have to inject myself with a very expensive, biological drug once a week. I've had to spend time trying to educate them, pointing out the problems. It was nice to see my wife jump in and help. They've seen a few of the symptoms affect me but it's lack of visibility for the most part (other than some swollen joints) makes it hard.

    I'm thinking of something like the sympathy packs for feeling what's it's like for a pregnant women. Can we invent something like that for RA?:)

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  • July 2, 2009 at 8:15 pm
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    Andrew!

    A sympathy pack? BWHAHAhaha!!;D
    Okay, like the torture methods Jonn described? or maybe a chemo dose to simulate weakness & fatigue?

    You sure are blessed to have your wife go to bat for you and with you. And I can recommend a couple of good RA blogs to rest of the family… 😀

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  • July 3, 2009 at 5:19 pm
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    Logial people, gotta love em. If it weren’t for the logical, feet firmly planted on the ground kind of people in my life, I would very likely be an airhead in the clouds floating slightly above the surface of the planet, doing little earthly good! Since I have them in my life, they keep me anchored, and I expand their horizons!

    Step back from the computer, Miss Dazy, approaching with your good eye closed, focus only on the red. You will see a delicately curved, lovely heart shape. And, it comes, all the way from the core (heart) of the melon! What's July without watermelon?

    Don’t feel bad, Miss Dazey, I just happen to have a doctorate in looking at the world with my one bad eye, ignoring a lot of reality!

    Reply
  • July 3, 2009 at 5:27 pm
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    Oh, Abby-

    You are so funny. And perceptive.

    It is a cut-out heart.
    And it is July 3rd.
    Just want to make ya'll smile. 😀

    Thanks for stopping by!

    Reply
  • July 3, 2009 at 5:29 pm
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    Miss D,
    I only waited a day so I wouldn't give it away to soon…To give someone else a chance!

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  • July 3, 2009 at 8:20 pm
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    Hi, I'm Jonns wife. We spend a lot of time teasing eachother about the various pains and struggles we face each day. Somehow that makes the day go easier even when we hurt. What is that saying about troubles shared? Something about them being halved? Well Jonn listening to me and helping me takes half the troubles for me. I hope I take half the troubles for him.

    Reply
  • July 3, 2009 at 9:07 pm
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    Nice to meet you, Rayny!
    Being alone is half of the battle!You guys are an inspiration. 😀

    Reply
  • July 4, 2009 at 12:06 am
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    My own sister has actually laughed at me for saying that the hardest thing to me about the makeup I use is opening the containers…I didn't mention to her that medicine bottles are also difficult. Now, this was BEFORE my actual diagnosis, but the pain has been there and she's seen it…just thinks I'm a wimp. I hate to say this, but she needs a good dose of pain for about a day and a bigger dose of compassion.
    🙂

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  • July 4, 2009 at 7:25 am
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    Jenny,
    Like the "sympathy pack" discussed above? Wish I could help her understand! Can you get her to read something?

    The hardest thing about makeup is holding the mascara wand. Can't do that anymore. Worn makeup only a handful of times the last few years. It is another casualty of RA. :>(

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  • July 4, 2009 at 10:08 am
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    Jenny, I'm right there with you on the med bottles. I love how I get my RA meds from my doctor and I can't even open the bottles. Do they not realize who their patients are?

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  • July 4, 2009 at 10:18 am
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    Giants Fan & Jenny:
    Bottles are made safe so kids won't get into them; MY KIDS OPEN MINE FOR ME!! Hahaha.

    Have you ever tried to get Prilosec out of the 2-layered foil blister pack. My dr. put me on it when I went on Mtx and it is impossible! I think the company has no clue folks with RA use their drug…

    …almost forgot to mention how hard it is to fill the little needle for the mtx…

    Reply
  • July 5, 2009 at 8:31 pm
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    Well kids, as much as I would like to make a list of people who I want to spend a day in my shoes, I don't know if I would wish this disease on my worst enemy. And, luckily, even tho I've been feeling really good from the meds I'm on, this is still an every-day battle.

    There are so many other things aside from the pain and swelling. Between knowing I can never have anymore children to my diet changes to the monthly blood tests to the possibility that I may not be able to stay on this med long-term to organ damage, etc who would want all this?

    So aside from wishing this kind of pain and lifestyle changes on others, how about if we just start saying to these people in out lives:

    "I'm sorry that you don't understand the disease I have and what I'm going thru. When you have an opportunity, Google RA. Maybe if you read about it, it will all make more sense to you."

    I was very leary about telling my friends and family. There are still some people that I am sorry I told. But I figured that people were gonna notice something was wrong. Most days I couldn't walk easily and my hands were in a state of what I like to call perma-swell.

    Surprisingly, a couple people were aware of what RA is. A few others asked for clarification. A couple people acted as if I was on my death bed. But most people had no clue. All they heard me say was the word 'arthritis' and then the assumptions began.

    I still have to remind people that I don't have creaky joints, and it's not about getting old, and my body isn't wearing out, and all the other responses I have to come up with as answers to the stupid things that people say.

    I have also gotten so much unwanted free "medical advice". Anybody else get that?

    What I have found is that the people who are in my life who really want to understand are making the effort. They will take my diet changes into consideration. They ask how the drug study is going, is my bloodwork ok, am I still OK on the stairs at work, bring me gluten-free beer, and follow this blog, my Non-Dairy Queen blog & FB page, and follow RA Warrior's FB page. I have friends who follow Kelly's RA Warrior FB page simply for me.

    I have also seen more clearly something I always knew…..people fear what they don't understand. Think about it. Where does discrimination come from? Fear. We discriminate against race, religion, creed, nationality, and disability. I have to wonder how many people actually do understand what RA is and have such a blinded view that they are fearful of the worst. I would never ask my BFF to help me walk or anything like that even tho I know she would in a heartbeat. But is that fear latent in the people in out lives? Are they afraid that we may ask for help?

    Maybe someday they will really get it. Maybe they won't. But I can't keep worrying about it. If I'm worth it to them, they'll make an effort to really learn about what I'm going thru.

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  • July 6, 2009 at 7:37 am
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    GF,
    Gotten "free medical advice"? Haha. yep.
    How about the T-shirt which says "My invisible illness is more real than your imaginary medical expertise"?
    Haha. At least we can laugh about it together.:D

    Reply
  • July 12, 2009 at 5:54 pm
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    I have had RA for that last 20 years, starting when my daughter (premature) was 9 months old. I had at that time three young children, and looking back, I think a part of their childhood was robbed by my disease ( I didn't have alot of the cool new meds we have now). Thanks for this blog it's great!

    Now, I have been laid off, and am struggling to find something that I can do with my physical limitations. Oh Joy LOL

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  • July 12, 2009 at 6:44 pm
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    Sarah,
    Thank you for sharing on the blog. Some of us are closer to the start of our journey than you and it is great to have a veteran RA fighter aboard.

    "Oh Joy LOL" – sarcasm appreciated. See newest post. 😀

    Reply
  • April 12, 2010 at 3:44 pm
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    Another on the money blog Kelly!

    (and the watermelon looks like a heart that is broken – at least that how it looks to me)

    Today I had a new heart break. I love my Rheumatologist. He is understanding and listens and treats me with respect. He does not treat me as if I am imagining things or trying to get sympathy.

    I received a voice mail while at work this morning that stated – “The is *****Arthritis Care, we are calling regarding your appt on …..with Dr. S – we need you to call to reschedule with one of the other doctors as Dr. S. is leaving the practice. WHAAAAT!!!!!! I have no idea yet WHY he is leaving or if he is moving or starting his own practice, whether or not he could not take his existing patients. I am heart broken that he didn’t say anything. I am heart broken that I have to try to find another doctor. I just talked to him on Saturday because of a bad reaction to Arava – I am still kind of stunned and have no idea what I am going to do. I don’t know any of the other Doctors in the practice, nor do I know anyone who has gone to them. I guess I will have to just file this under ‘one more disappointment’ but Wow I feel absolutely lost right now……. And what does it say about our relationship with our Rheumies that this feels like he just “broke up” with me!!!

    Thanks for this Kelly you are so correct – RA breaks your heart but even though I was pretty compassionate before, I have become even more compassionate since battling this demon. And yes it is in our heads, our hands, our feet – and for me it is also in my mind – ALL THE TIME no matter how hard I try to forget about it for even a little while – it never goes away.

    Hope you had a wonderful day with your daughter! You work so hard you definitely deserve a good day.

    Keep fighting the fight – you help so many with what you do.

    PM

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    • May 11, 2019 at 5:41 pm
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      My worst nightmare! I have trusted, felt free to question, respected and always felt enormous gratitude to this hard working, dedicated, knowledgeable, and endlessly caring man. I know I will see him retire within the next five years or less. That will be a very difficult, heartbreaking bridge to cross.

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  • May 29, 2010 at 3:48 pm
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    Once again, thank you so much for writing your thoughts for us to read…I’ve been consumed lately about having no one, and those that I do have, have no clue. If I’m capable of getting up in the morning and taking a shower, brushing my teeth etc., then I’m completely exhausted after it. My mom recently saw a little video at her dr. office – which talked of some RA facts. Of them, what struck her was that 3 times as many women are effected by RA, but the men that get it tend to be effected more by it. Whether true or not, this video made her realize I think, that I wasn’t just being lazy around the house, or exaggerating when I spoke of my pain. I think all relatives of RA patients should be made to watch a “facts” video!

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  • September 15, 2010 at 8:23 am
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    God bless you, Kelly- and everything you have done- and that you are doing for this insidious disease.

    My husband and I are “gearing up” for my entree to the MTX world- and though we are naturally uneasy- we are in our 30s- and want a life together that is slightly normalized.
    If MTX or a biologic- or both- are required- I will go into that place, just as Barbara ( damn, are you a brave woman, worthy of our collective respect) did with breast cancer.
    I know I will find a “support group” here, where I live—but I will be on this site as long as my hands will allow me to type. I am grateful beyond words for your work.
    Bless you- and all- and let us support each other, regardless of distance.
    Peace,
    Nicole

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  • October 9, 2010 at 1:11 pm
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    Does anyone else have times where you hurt on the inside? I don’t know what the hell it is, but it’s pain on the inside of my body. Around the organs, between and around my shoulder blades, between my breasts on the inside. It is the most awful feeling!! I don’t have joints in there!! LOL. I just wondered if anyone else has this. It’s extremely hard to describe cuz it’s like the very area between organs HURTS!! WTH???
    Any replies are welcome :-/

    Raini

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    • October 9, 2010 at 1:24 pm
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      hm. Well you have ribs & they can hurt where they attach to other bones. And there could be symptoms in lungs or heart. Digestive problems or pains are common too. Have you asked a dr yet?

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    • October 9, 2010 at 7:57 pm
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      Raini yes experience this often. RA frequently affects the membranes in the Bursea, causing bursitis. I wont bother to list all the “strange” places we have them, but most your complaints seem to center around the one located inside the chest, just behind the aortic arch. It can hurt so bad you think you are having a heart attack.

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  • March 7, 2011 at 2:48 pm
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    RA has broken my heart, over and over again. I became disabled four years ago. I’ve had eight surgeries in those years but the mental anguish I’ve experienced has been much worse than the pain. I felt that I’d let my family down. We lost half of our income and struggled financially. The medical bills were horrendous. I couldn’t garden, do most housework, watch my grandchildren etc. It took a very long time to come to terms with it all. Fortunately I have a very loving and understanding spouse. He assures me everyday that I am still beautiful and important to him. That helps alot.

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    • March 7, 2011 at 3:27 pm
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      It must be a great relief to have someone who believes in you Betty. You said it so well – RA breaks hearts over & over for many reasons.

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  • May 9, 2011 at 12:42 am
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    RA breaks my heart a little more each day…….my 11 year old daughter has been “suffering” since she was 2 years old. She has ups and downs, but this year it seems to be mostly downs. She is home more than at school and it makes me feel so sad for her 🙁 I’m feeling very overwhelmed by it all at the moment, I can’t imagine how bad it feels for her, she is soooo brave and tolerant. Such a cruel disease.

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  • May 12, 2012 at 6:31 am
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    Yes, RA does affect every part of the body and it is in the head, I have had migraines every day since the mid 1990’s and sometimes I wake up with one and get one in the day later. Imitrex helped a lot but insurance only lets you get 9 a month. I have always been headache prone, but while on Methotrexate I started getting them every day. Took this drug for 3 years till I told the doctor I couldn’t stand feeling like I had the flu and the headaches every day. I lost the flu symptoms when I stopped Methotrexate but kept the migraines. Now my vision has suddenly gone so blurry I can;t see as far as I could 2 months. I have an appointment to have cataract surgery evaluation, When the RA first hit me so hard in the beginning, it was in my head. My jaws locked up to where I couldn’t get my mouth open more than an inch or so. I couldn’t stick my tongue out or run it across my front teeth without extreme pain. I lost so much weight I was skin and bones before the doctor brought out what he called the “Big Guns.” Since this was the mid 1980’s he used a shot of gold and a cortisone burst. That is what he called it, but it was a miracle and brought me out of it even though the gold shot gave me a rash that lasted a few months.

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    • May 12, 2012 at 9:50 am
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      Wow, Bon, you certainly have some veteran tales to share! RA treatment has made progress, but I also wonder how we’ll look at today’s issues 20 years from now – perhaps it will be much the same experience.

      You’re right about symptoms in the head area. I’ve had RA inflamed jaw many times & neck, causing headaches. Do your drs have any suggestions about your headaches? Since it’s so common for RA to affect the cervical spine, I hope they’ve checked that out. It can cause terrible headaches.

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  • May 14, 2012 at 12:44 am
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    Truly live with all the evidence daily, losing jobs, eviction from group homes, lost a marriage. 3 mins post diagnosis, my husband life me. Diagnosed and grieving almost Took me away. Every person should read and learn, disease is life long and incurable.

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  • May 31, 2012 at 8:17 pm
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    I lve with the heartache every day as well. I lost my first career to this disease along with my marriage and two pregnancies.I have one child but I can no longer have anymore children. I had a miscarriage in september due to inflammatory issues. The only thing keeping me going right now is my son and many days I wish I wasnt here at all.

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  • September 27, 2012 at 12:10 am
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    RA is very hard on marriage. Very few marriages survive any type of chronic disabling disease. I know my own didn’t. She simply could not accept that I was never again going to be the bread earner that I used to be or the fact that I was physically incapable of doing things around the house that I used to be able to do. Such is the story of my life.

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  • March 29, 2013 at 1:55 pm
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    I too feel lost within this horrible disease, and sad that I have lost my family to this horrible disease. My mother has suggested it is all in my head, there is nothing wrong with you. You look good, and if they only knew the pain that I am living with!

    I have become so all alone, and try so hard to stay positive, because I have seen those who are worse than me. I pray for them and my heart cries out for understanding. I want to give up the fight, but I see my husband and how he looks at me with such love and compassion that I continue to fight without my family. I forget how much we become closed out from the world!

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  • January 21, 2014 at 6:49 am
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    Finally diagnosed a couple of years ago (after about 5 years chasing more and more mysterious ailments) I started going downhill fast. Five months into methotrexate treatment (which didn’t seem to be working very well anyway) had a sudden and violent reaction to it, in the space of one shower lost about 1/3 of my hair (tho that might be due to other issues as well as months later down to about 1/3 of my hair), developed rashes all over and every little nick or cut I had – even mostly healed ones – swelled up, burst open and started bleeding. I was taking the shower to get ready to go see my Uncle who was in town for a convention. I still went.
    Several months later had to beg my relatives for help ’cause I wasn’t well enough to keep up paying rent, etc. A couple of them are extremely well off, and so I hoped and figured they’d be the ones to pitch in. Rent help arrived for a few months, and meanwhile a somewhat old friend who lived elsewhere offered to marry me so I could have health insurance.
    The “fun” of living with progressive RA (which may actually me MCTD/UCTD… as there appears to be some confusion over the definitions I’ll just say pick which one you like, so long as it’s the one you consider worse!) aside, things seemed about as decent as they could get and (again, lol, RA aside) considered myself pretty lucky.
    Fast forward… The relatives who could actually afford to do so did not pitch in for rent, they all left that to my aforementioned Uncle, for whom it was a burden. OK, end that scenario. And tho of course by all means I didn’t want my Uncle helping if it was a hardship for him, could have done without the lecture informing me I had lived my entire life wrong (I’m 42, have run my own design business for 17+ years – never made a fortune, never wanted to – did what I loved and for people I believed in for what they could afford to pay), shoulda been prepared for these kinds of things, and apparently I never get in touch except when asking for money – and always with some new ailment, people are getting tired of it. Huh? um, yes, I’d asked for help at times when younger – but every time I got in touch? Really? And the ailments… well, I’m sorry. Trust me, I don’t like it either, I’m pretty damned tired of it myself ’cause gee, I actually live it. And if I’ve been living my life wrong the whole time, don’t ya think ya might have mentioned that, oh, maybe 15 years ago or so? BTW, I have friends that lived that way – they aren’t any more prepared financially than I am for this kind of illness. Health insurance is hardly a given for our generation.
    I never hear from them anymore. Actually, that’s incorrect. I get the family emails with photos from all the events I’m no longer invited to. Not quite sure if it’s intentional, or if everyone merely forgot to take my email address off the list.
    The guy I married for health insurance? Well, I’m sitting here right now looking at the last bit of pain medication I have trying to figure out how I’m going to pay for a refill at full price because while the divorce isn’t quite final he went ahead and had my health insurance cancelled during open enrollment at his job – despite that being illegal in his state. Out of spite, as is clear from the taunting message via Facebook informing me what he’d done. Why? Cause apparently it wasn’t really ever about me having health insurance, just a ruse to get the girl by any means necessary. If I’m lucky and he and his lawyer aren’t just feeding me a line (as, needless to say I can’ afford to fight a divorce in a state over 1500 miles from me) he’ll have to pay for three months of health insurance (though that might mess up my Medicaid application so I might have to turn it down after all, as I just spent most of last year waiting out a pre-existing condition clause so I haven’t had any actual treatment for the RA or my spine that the RA is doing its best to rapidly destroy since the MTX blow-out and if I thought I was in a world of hurt then… so really, I just want to get some medical care). But even if he ends up paying for insurance – what am I supposed to do in the meantime? I’ve barely been able to make it out of bed for a week now and while I’m not fond of pain meds or having to rely on them, reality is, without them I can’t function.
    Left the place I’ve called home for 21 years, most of my adult life, as there wasn’t much left for me there. Pretty much all my friends drifted away – some faster than others and a small few still kinda playing lip service. Figured I might as well go somewhere where the climate is better for me and there’d be access to better medical care once the insurance issue got straightened out. That’s when the few friends still playing lip service dropped out, didn’t agree with me going to get back together with my sorta ex ’cause he’s got some issues that had made life difficult in the past.
    Well, unlike them I have a hard time abandoning people I care about, and my no longer ex has taken major steps setting his head straight and “fixing” his issues. Good thing, ’cause I need him (lol, and I love him) and he’s promised he’s not going anywhere, regardless of what I can and can not do, regardless of the financial havoc this is wreaking on our lives, regardless of how my illness also hurts him and leaves him feeling helpless. I used to be one of those people that took on the world and more, put on fundraisers for friends or even people I barely knew when they had crises in their lives, organized things in the neighborhood, etc.
    I guess people have a hard time accepting it when we become “helpless” (in quotations because I and “you,” we aren’t helpless… just need more help!). And don’t understand no matter how hard you try that most of the time we just want people to keep being our friends. Yes, maybe they might have to come over more than we go to them or go out to dinner or the bar or a movie – but they certainly aren’t being put on the hook for anything they don’t want or can’t give.
    While it still hurts, I can kinda understand my once were friends – kinda. But my relatives? That hurts beyond belief. And same goes for them – if they can’t or don’t want to help, ok, so be it – my guy and I will figure things out one way or another. But to make it so entirely clear I’m nothing but a burden on their lives? And rub my face in it with the family emails? It makes me so sad. Oh, and they took away my Grandma as well, she’s closing in on 100 and while it too her ’til 97 or so to start loosing some of her faculties, I can’t just call her up anymore and apparently no one’s going to tell me on her good days and as she’s the one who has always been there for me (mother died when I was very young) the realization that I most likely will never see her again just completely shatters me.
    But then I’m so grateful for everyone here and a few other places I like to visit online – don’t know if this makes sense, but while I still feel very lonely I don’t feel so alone thanks to places like this! And for the few friends I still have who can accept that I’m different but also still the same, and for my guy who has come home every day this week from long hours at his new job and cheerfully made me cups of tea and way more food than I can eat and helped me up and down when needed and, most amazingly, lol, has even started doing laundry (tho that might have at least as much to do with having run out of clean clothes!).
    Like so many others here trying to focus on the positive, even if some days there doesn’t seem to be much of that… as otherwise, yeah, there’s a world of cr*p (‘scuse my language!) our there and it really can break your heart (if you let it… trying not to let it!).

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  • January 21, 2014 at 9:27 am
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    I have another theory. We are highly sensitive/compassionate people in the first place. As such, we are prone to absorbing stress and negativity from others and to creating or experiencing stress more profoundly than the average person. We all know the role stress plays in illness… I believe our sensitive natures along with our genes can predispose us to acquiring autoimmune/inflammatory conditions. This could be part of the reason so many of has have dual or triple or quadruple diagnoses… and part of the reason that of four siblings with similar genes I am the only one with these illnesses and the others pretty much run marathons. As the sensitive middle child who tried to keep the peace in my family of origin, I sponged up stress from others while my siblings worked theirs out in other ways. It’s nobody’s fault, it’s just the way my body worked and I was too young and unaware to prevent it. I am working on keeping stress and negativity out of my life and surrounding myself only with people and activities around which and whom I feel good. I think it helps. Also trying not to create/perpetuate any negativity or stress myself. I have noticed that consciously cultivating peace and joy is contagious in those around me and my whole family is getting along better. Not always and not perfectly; but when things do get hairy I’m trying to maintain calm and encourage it in my kids…

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  • January 22, 2014 at 8:38 pm
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    Anna… Sounds like you have dealing with a lot. I am so glad to hear that your husband has been around
    recently perhaps you guys will be able to work it out. I sure hope so. My husband sometimes forgets that I am hurting. It took me quite a while not to lash out at him about ” being insensitive” to me. Now I just have to say “remember” I try to remember to smother him with praise, and that so builds up his ego, that he wants to help me even more. Many churches have volunteers who would absolutely love to bring over meals,clean up your kitchen, or just visit with you over a cup of coffee or tea. Yes I must agree the health insurance nightmare sucks. Perhaps in the end with Obama care, we will all get the needed coverage. If you are able to apply for disability do it now. Then you will have Medicare which will pay for your meds, in addition to living expenses,that is what I am doing. The pay doesn’t nearly compare to what I made working, but at least its something. We also go to our local food bank for free food. I am pretty sure my spouse will qualify for Medicaid. Still waiting to here back It is extremely difficult to not get the help from your friends or family that you need, want, and deserve. However, you just need to let that go. It is not healthy for you. I know you don’t understand why, and you may never, but the negative energy that comes with that, well it will just make you sicker. Be angry at the RA not your loved ones. I am 57 years old an was dx with RA four years ago. I pray that this is somewhat to you Anna. Love, Nan

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  • January 22, 2014 at 8:47 pm
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    I meant somewhat of a help, but you probably knew that, lol!
    Nan

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  • January 21, 2017 at 9:42 pm
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    #rheum – It sure does break your heart. From the damage of RA to the synovial fluid around our heart & lungs or the loved ones who leave a 25year marriage because “I don’t love you anymore”, or the adult-child who treats you like crap because… who knows…

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