Groceries, Guilt, and Feeling Old from Rheumatoid Disease

At our family get-togethers, people tell jokes about how we’ll always be “Young.” I stopped telling those jokes a few years ago. And I think I just figured out why.

Rheumatoid disease makes me feel old.

It’s not the wrinkled brow from unspoken pain. Or the pale spotty skin in place of my former perpetual tan. Or the extra grey hairs from the stress of illness. Okay, maybe it IS those things.

But even more so, it is the way I move. Or don’t. That has to be the one thing that steals the most youth from me.

Moving through the grocery store alone

Friday, I was picking up a prescription and got a call from home that we needed bread and jelly. Gee, I wonder whether someone was trying to make a PB&J for Roo? A few minutes later as I was going into the Publix, I passed a woman who was shuffling stiffly toward her car. Her neck didn’t move; her hips didn’t sway. She just pushed herself forward.

I couldn’t be sure, but it certainly appeared to be a characteristic walk of Rheumatoid disease.

Move Meet Match windowIn the store, I watched how people walk and move. I saw a woman about my age who was heavier than I am. She had a spring in her step that reminded me of dancing. We smiled at each other and I noticed the cute heels she wore with her jeans. She walked happy and I remembered being able to do that.

A woman with long grey curls walked past me. Her shorts revealed large rock-hard angular calf muscles. Coloring her hair obviously wasn’t what made her feel young.

One by one, I struggled with screaming hands, wrists and shoulders to put a bunch of things in my cart. When I finished gave up, there were two senior ladies to check me out and bag my groceries. This actually hadn’t happened to me before because I rarely go into the grocery store alone and I’m normally there later in the day, when there are strong teenagers to bag the groceries and load them to the car.

I slogged all of my groceries onto the belt except for the boxes of Coke I had drop-guided into the cart. I pushed the cart around near the register so Carol the cashier could ring them up with a handheld scanner. Maybe she didn’t have one though because she picked them up, with a noticeable effort. Which felt more terrible, the wrists I was already clutching or my heart from watching this woman pick up our soda? (I don’t even drink soda and I only buy it when it’s on sale… But mental bargaining didn’t help. I felt like I was somehow mean to her.)

Then the worst part: “Do you need help out with these?”

case of Coke

I had to choose between letting a senior lady load my groceries and protecting my hands that hurt so badly from driving all day the day before. My hands won. But, I determined to help her and I did.

Then when she bent down to get the Coke, I cringed.

Many times, I yearn to move. I want to join every runner I see. I long to walk with a light happy step.

I wonder if anyone can understand actually wishing to load boxes of Coke in a parking lot.

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Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

70 thoughts on “Groceries, Guilt, and Feeling Old from Rheumatoid Disease

  • November 5, 2012 at 5:45 am
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    I had to chuckle reading this. Sounds like my experience exactly. I was thinking how clever I was at Wal-Mart the other day when I managed to tip the kitty litter over quite cleverly so it landed by my feet on the little scooter basket I was driving around the store. I’ve learned to have helpers position things just so in the back of the car so I can slide them off onto my walker to get them up to my apartment. I watch people enjoying a walk and I remember what that used to be like. My ra is complicated by lung problems. Today I don’t feel as “crunchy” as I did yesterday. I do see my rheumy today and am going to ask if he was in Chicago this past weekend.

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    • November 5, 2012 at 7:01 am
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      wow, it sounds like you’re ingenious at managing things – getting groceries up to an apartment with a walker! I’m lucky I usually have help in the store from one of my kids and if they want the groceries to be in the house, they have to bring them in now! 😉

      Reply
  • November 5, 2012 at 5:56 am
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    I know how the guilt feels when I can’t always play with my little boy who’s 3 years old and doesn’t understand, I’m 27 yrs and I feel so old with the disease to, my hair has been falling out recently as well as going white, my skin doesn’t look radiant any more and I can’t remember the last time I had a spring in my step

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    • November 5, 2012 at 7:05 am
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      yeah, Kelly, it’s not something we usually talk about much because we focus on the fight. But it does feel strange to seem older than our years doesn’t it? Little ones understand when something’s wrong even if they don’t know what it is so I’m sure he knows you wish you could.

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      • November 5, 2012 at 11:38 am
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        I was diagnosed at 27 and had my first child at 29. I always thought I would be the mom who played ball and rode bicycles with her kids. I never have been able to. But, I have the most amazing, compassionate and helpful children. My oldest are teenagers now and they help with everything and are very kind to all around them. I believe that much of their compassion has come as they have seen me struggle. My husband is also very kind, patient and supportive (his mother also had RA). So while I feel very old and people in their 70’s and 80’s are constantly leaving me in their dust…I am so grateful for and proud of my amazing children!

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        • November 7, 2012 at 3:49 am
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          Like my grandparents. My one grandmother is doing great. Cruises, trips, group this and that, club house this and that. Wears me out listening to her! My other grandmother is not as well. I worry about her. I used to be able to do the AF water class and these 60 something year olds would tell me to try different classes because I would be more challenged. I didn’t comment because why explain that I have and I hurt myself doing them.

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  • November 5, 2012 at 7:12 am
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    It was very hot in Kansas this summer with almost no rain. When the rain finally fell from the sky, I longed to run out and twirl around letting the sweet drops soak me, to dance and welcome the long awaited break in the terrible heat. Instead I was in too much pain to even venture out and sit on the patio. My heart and spirit desired it so much, but my body just couldn’t comply.

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    • November 5, 2012 at 7:21 am
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      Dear Lisa, that describes it so well. At times it feels like we are trapped in this body. Sometimes I am joyful just watching my kids do what I wished I could do too.

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      • November 11, 2012 at 10:00 pm
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        So great to know that I am not alone in experiencing difficulties in the simple tasks in life. For me, I didn’t know what was going on until I looked at the stairs in my house and wondered how was I going to climb them! Shortly after, nearly 10 years ago, I was diagnosed with RA. Since then simple tasks like carrying soda at the grocery store have become a significant event not an everyday task. Before RA everything was easy and effortless, today I think about everything I do, especially the grocery store!! I don’t look sick thank goodness but if everyone knew how bad I feel they would understand. RA is a lonely disease…thank goodness for this site to share our experiences and not feel alone:)!!

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  • November 5, 2012 at 7:21 am
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    I no longer make old jokes at my own expense or others eithers! And yes, I wish I didn’t need help. Sometimes I try to soldier through because I don’t look like I need help. The humira has relived a lot of my pain and swelling but I am left with vast muscular weakness. And only two months into the humira I have had to suspend treatment for bronchitis and of course, the pain is coming back. Buying groceries? I do ask for help with heavy items and when I get home I call my daughter for help to unload. Meanwhile I take my 83 year old mother shopping as well and carry her things for her. I feel bad when there are things I can’t do for her.

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  • November 5, 2012 at 7:30 am
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    Great article! There are times when I can barely get the cat litter into the cart let alone in the car and into the house! Some days are better than others 🙂

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    • June 20, 2013 at 7:09 pm
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      Boy do I not only totally get this article, I also get the older siblings thing. My sister is 10 years older than me..50, and has spring in her step and can work out and do walks n all kinds of fun stuff. I however, spend most of my day in bed, begging my body to stop with the pain already. And when I do walk, I need crutches or a walker. I walk worse then my 74 year old mother and I feel guilty and awful that I cant help her out…I cant even help myself out, lol. Ohh, sigh….maybe some day I will find a good RA doc, been searching for 20 years now

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  • November 5, 2012 at 7:32 am
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    My sister was lecturing me a couple days ago about how she is 2 yrs older than me, but I’m sooooooo much older than her because I’m not active like she is. I could not deny it. In the past 5 yrs I’ve aged 20 yrs. Apparently I’m supposed to feel guilty about this.

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    • November 5, 2012 at 7:32 am
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      as if it’s a choice you made? 😛 sigh.
      (btw, I think my brother thinks the same things about me)

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  • November 5, 2012 at 7:40 am
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    I want to run with all those runners out there too! As I read your post, I am so thankful to know I’m not alone.
    Sometimes I just want to cry, but I also go to the grocerie
    stiore in the afternoon, I am a little more flexible. I hate
    to be weak! I have had RA since I was 39, I am now 60, everyone always is telling me how great I look, boy if they
    only could take a look inside 🙂 Thanks again, keep writing!

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  • November 5, 2012 at 7:59 am
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    yes.. the guilt!
    this article made me cry.. It reminded me of what I try not to be feeling everyday…guilty. I have no true humour anymore.. I go searching daily for the remnants of laughter that may be lingering (from better days) in the corners of my life.. My friends(?) and family do tend to encourage me to be more active and suggest that my off an on disabilities are a choice I make. The physical pain is simply not enough so I must be emotionally compromised as well. Stay strong everyone.. seek balance.

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  • November 5, 2012 at 8:04 am
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    Oh, Kelly… I could have written this myself, if only I was as creative as you (and as gifted a writer).

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  • November 5, 2012 at 8:13 am
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    I understand! Yesterday I intended to take a short nap after church, then to the library with overdue books, then I’d stop at the store for three quick things, then back to church for a meeting…

    But I napped too long and didn’t have time between the library and the meeting. But I HAD to get lunch meat or starve today at lunch, so 8:15 I arrived at the store. Need lunch meat, eggs, bananas, and peanut butter. OK, four things. And they all happen to be along the perimeter.

    Moving as quickly as I could, because steam was evaporating fast and when I hit the wall I hit the wall and nothing can induce me to move farther, I got my things and left. The nice girl put my things in 3 separate bags — didn’t want to crush the eggs, but why couldn’t the lunch meat go in that bag?

    Really, though, it’s a toss-up: fewer bags I can’t lift, or more trips from car to kitchen?

    I am only 35 but I definitely feel old!

    God bless, Kelly!

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  • November 5, 2012 at 8:19 am
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    I was diagnosed with RA and Sjogrens in 2003. Added in Fibromyalgia in 2009, and in 2011 I was diagnosed with cardiac and lung problems. I have been home on disability since January 2011. My sister is in Florida this past weekend for our annual November weekend. I have short little legs and always walked faster than her. They are staying at a large hotel in Orlando; I had to pay $21 to valet park, as the self parking lot was over a block away and there was a pretty steep incline on the sidewalk going up to the lobby. I managed to walk fairly well to get to her room (thank goodness she was near an elevator), down again to the pool bar (that blue margarita was soooo good)where we sat for a few hours; and then out to the front lobby to claim my car. We went out for dinner, I had some trouble getting out of my chair after sitting over an hour, and by the time I got home I could barely move. I would not have missed the last 3 days for anything. I took some prednisone that I have for flares, a couple pain pills (Ultram because my rheumy will not prescribe narcotics) and my Flexaril. After a sleepless night spent with multiple ice packs I was better Sunday after noon, but by nighttime I was hurting again.
    My sister has not seen me in a year…I now am snail speed, my hair is so gray, my joints are puffy and I walk with a cane and am so short of breath with any activity. We stopped at Publix to pick up a few groceries, and like Kelly said,most of the folks working were elderly and I almost felt guilty asking for help out, yet they could run comparative circles around me. I know I get “the scowl” because most people think I am using some elderly relatives handicap sticker, but it’s all mine.
    I would love to have some kind of part time job that did not have walking, breathing or lifting as job requirements. I give these older workers credit for having a job (but sadly, I think some of them probably have a job as a necessity) I have always been really independent and having to accept help doesn’t come easy; and I am grateful for their assistance. I just wish we could rewind back to 6 years ago when I felt fairly normal and active.

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    • November 5, 2012 at 8:24 am
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      Hi Laurie, I’m sorry you’re doing worse. It was sure funny to read “a job that doesn’t involve walking, breathing, or lifting” – lol. I think so too.
      I hope the time with your sister is a blessing.

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    • November 5, 2012 at 10:39 am
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      If your rheumatologist will not prescribe OxyContin tell him it is a well known fact that people in absolute pain do not become addicted because this is for our pain. Ultram does little. Constant pain takes over our lives people who become addicted are those who take drugs for sake of taking them. And it becomes a psychological situation instead!
      Any dr who does not prescribe and monitor pain pill management is not a good doctor
      They are just for themselves and feel no empathy whatsoever for their patient
      Also if you ever get better, weaning off can be done gradually and easily
      It is the pain that is the bane of our existence! Tell him and ask about what his problem is in relieving patient pain. All ultram ever did for me is blur my eyes!

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  • November 5, 2012 at 8:52 am
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    I just have to say thank you for making me aware that other people are going through the same thing, I felt so disabled. Yesterday was my first solo trip to the market for a few items. I had trouble lifting a bag of potatoes, the infamous box of soda and cat food. As I made the last turn to go to the checkout counter, I wasn’t quite sure how I could get the items out of the cart to the counter, pushed through and did it. Shuffled out to the car with ankles screaming. We don’t get help in NY with loading groceries into the car, so flopped the heavy items into the back seat. Made my wrists join in the screaming loading the other 2 bags into the trunk. Drove over the lawn to get as close to the back door as possible and was only able to get the perishables into the house. Will try to get the remainder in today after work, but both wrists and left ankle are complaining mightily.
    God bless us all for managing all we can. I sure do miss being energetic and pain free.

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    • November 5, 2012 at 9:02 am
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      what an eye-opening description Pat. Thanks for sharing. And yes! God bless us all for pushing ourselves to do as much as we can.

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  • November 5, 2012 at 9:24 am
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    Kelly you were able to put in writing what I feel so often. I also find myself watching people more, especially those with walkers, canes, motorized carts, etc., wondering how old they are and why they are limited in their mobility. Wondering what lies ahead. Considering items at the grocery store like cokes and kitty litter. Bottled water, potatoes, sugar, flour (which always seem to be on the lowest shelf so I have to bend to get them and then lift) and the worst for me-MILK JUGS! Things I NEVER considered before. You wrote what so many of us think about as we compare ourselves. Thanks Kelly. I am not alone, am I? Its good to remember 🙂

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  • November 5, 2012 at 9:25 am
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    Hi Kelly Point on this morning. Had a ruff weekend. Had shots in my back and hips. By sunday i was feeling really good. I havent felt that good in years. dont take the shots regurly. I found myself favoring my back and legs. I automaticly grunt going up the stairs. I realized it didnt hurt today. One for me. I could walk like my age. Not like an old person. No insult intended.Im 55 yrs old. What would it be like with no pain ever again. I dont know. I do know i feel great and Young right now. Thanks Kelly

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  • November 5, 2012 at 9:46 am
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    Excellent story on how it feels daily
    Today I am lying down in front of a beautiful Key West harbor and should be enjoying bicycling with my husband as I used to in vacation but each year worsens and I ad another appliance to assist me. Everything is an effort and without my husband I would be lost completely
    However that is not my reason for this comment
    I have had this horrible insidious disease for over 20 years now. It began with a swollen index finger! Who knew nothing would contain the viciousness of RA. BEGAN WITH MINOR DRUGS FELT GOOD for years, then Wham . I believe age takes its toll with RA.

    Humira, Enbrel,Simoni all anti TNF factor biologicd stopped working. Then I found out that there are other cytokines like INTERLEUKIN 6. I did blood test for it and mine was off charts. Will try ACTEMRA NEXT. Remicade made il6 higher. Look it up for those that biologics have failed. Not all RA IS BASED IN TUMOR NECROSIS FACTOR. Excuse IPHONE BREVITY. JOANNE

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  • November 5, 2012 at 10:10 am
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    I’m 17 years old, and I think this has literally been the hardest task to do that has caused me psychological distress. I am a college student, who doesn’t really have anyone else to help with the groceries. I also get dirty looks when I park in handicap even with the sticker. It had gotten to the point to where I would walk to the store and carry the groceries back by hand just to prove… something to myself, I guess. But now I can’t hide the pain anymore and have to just deal with the looks and snide comments I receive. It does make me giggle a little though to make jokes about how old I feel (as morbid as it sounds).

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    • November 5, 2012 at 8:21 pm
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      Andrea,
      I can relate! I was dx at age 10, and found my college years to be a huge struggle. I was surround by thousands of heathly active people my own age and yet I would struggle to walk to a class. I didn’t want others to see my disabled bus pass for the campus bus giving me 1/2 price (so I could ride more often). Sometimes even the bus driver gave me the side eye! Anyway, I get it. I’m 40 now, and still making an effort every day!

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  • November 5, 2012 at 10:59 am
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    Kelly, reading this started the tears. I’m almost 53, but never looked, and especially never acted my age. I have a really cool cane lying on the back seat of my car. I used it once, but felt so embarrassed, it is now relegated to being my semi-permanent backseat driver. But it’s a constant, painful reminder of what I can no longer flaunt…the spring in my step. My 84 year old mother still takes the stairs 2 at a time. I hope I can celebrate 84. On my feet. Keep on truckin’ Kelly.

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  • November 5, 2012 at 11:17 am
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    I can so identify. In fact, aside from dreading grocery shopping for all of the above mentioned issues, feeling foolish when I must carry a gallon of milk like a squalling baby, and if I need to squat down, it is with the knowledge that I might not be able to pull myself up again without a groan, moan or other sound effect.
    But we do what we need to do. And I am thankful that I do not need to work these days, as so many seniors are with the normal aches and pains of aging. My hat is off to them.

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  • November 5, 2012 at 12:13 pm
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    Kelly, so on point. One of the thoughts that keeps circling in my brain lately (though I’m trying to fight it) is that I feel 88 years old, not the 58 that I am. Between the RA and the Prednisone side effects – stiff painful joints, fatigue, compression fractures, incredibly fragile skin -I am startled at how old I feel. And it sounds like we all can relate to the grocery store adventures. Lifting from the cart to the check-out counter is the worst for me. And after the groceries are bagged, sometimes they are left there, I guess with the idea that I need to put them in the cart myself. With reluctance, on bad days, I apologize and ask if they can do this for me. I think we have all learned some tricks for shopping, like buying only the potatoes needed for the night not a 5 or 10 pound bag, asking that perishables all go in one bag, so they can be brought in from the car with the rest left till later. OK, there’s a positive! RA teaches us every day to be flexible and creative!

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  • November 5, 2012 at 1:25 pm
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    I loved your post. It is exactly how I feel when I go to the grocery store or Walmart. As a matter of fact, I am headed to Walmart today. Grrr! I do try to go during the week when there is less of a crowd, but I do find, like you, a lot more people older than me working there and helping me. Guilt is such a terrible feeling and it sure seems like our brains are not always on our side. Great article and thank you for all you say and do for all of us. You are truly an angel. You lift much more than the weight of those darn cokes with your blog and activist work for RA patients. You move mountians girl!!! 🙂

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  • November 5, 2012 at 1:45 pm
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    I choose to reject guilt. I am thankful for those able to help those less able. A disease is not a sin. I am overcoming my type-e personality. (where one thinks they have to be everything to everybody.) It is okay to be weak. It is okay to have needs. If somebody has a problem helping me, that is their problem, not mine.

    My father (my hero) was an alcoholic. He dove into a lake where it was four feet deep and broke his neck leaving him a quadraplegic at age 33. At 42, he went through treatment. After he got sober, I watched him get up at 4:00am every day to get ready for a 9:00 class in college. It took him that long because of his disability. After graduating, he got a job with the state administering grants so that drug and alcohol treatment centers could provide services for people with disabilities. He has spoken before Congress. He chose not to let his disability hold him back but to overcome it. He set an example for me that has served me well with my RA. I am thankful beyond words for his strength and courage in the face of a mountain of obstacles.

    Finally, I am thankful I can get up every day and love those around me. That I can do no matter what my physical condition.

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    • November 5, 2012 at 3:15 pm
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      Although I felt so badly for everyone struggling with those darn groceries, it made me feel so much less alone.

      I am lucky—-I am not alone—-I have a husband and two very helpful daughters, son-in-laws living just a few blocks away. Also lucky that even though I have had autoimmune issues since my early 20s, the RA did not really hit until 6 yrs. ago. I am now 66, but if I compare myself to my few friends, I come up lacking!

      My movements are slow and deliberate, and I tire very easily. Recently, muscle weakness has increased a lot. The dog and I walk 45 min. a.m. & p.m. which used to strengthen my legs, but something has changed.

      Of course, I AM older now, and the RA is picking up speed now. Will try to outfox it with med. change!

      Good luck to all…….

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  • November 5, 2012 at 2:52 pm
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    Your story bought a tear to my eye, I’m 46 and diagnosed with RA almost 2 years ago. Usually I can cope at the supermarket,but last week, I tried to put an 8kg bag of dog kibble in the trolley and couldn’t lift it. Luckily for me, a shelf-stocker was right there and said, here, let me help you.
    When I got to the checkout, I knew I wasn’t going to be able to lift the bag, so asked the checkout operator if she could scan it from there as I wasn’t able to lift it today. She took one look at me, looked at the bag and then went out of her way to help. She closed the counter she was on, finished scanning my groceries, repacked a few bags that might be too heavy, then pushed my trolley to the car and put it all in the trunk. Wished me a happy day, and went back inside.
    I reflected on her kindness and drove home in tears, that someone hadn’t judged, they had just helped… then gone beyond just helping and shown me kindness.

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  • November 5, 2012 at 2:53 pm
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    Kelly
    I haven’t been following your blog for long but I wanted to tell you I appreciate you and what you do.
    I know how you feel. I was just laying here curled up in a ball of pain wishing I had the energy and strength to clean my house. I really want to be able to do the things I took for granted 10 years ago, even the things I thought I didn’t want to do at the the time.
    Thanks again,
    Connie

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    • November 5, 2012 at 3:00 pm
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      It is good to meet you Connie. Don’t you laugh when people say, “Don’t worry. The dirty house will be there tomorrow.” LOL – that’s what I’m worried about…
      Good luck with your new blog.

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  • November 5, 2012 at 3:03 pm
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    Dear Kelly thank you, thank you, thank you. Five minutes before reading this posy I was literally sitting in the living room crying and talking to my partner of 27 years, telling her that “I just don’t want to live this way any more and I’m scared because I really have felt thoughts of seriously just ending it all because I am so tire of fighting a never ending battle, physically and emotionally”. God bless her, she just let me cry and talk and then she talked about how proud she was of my and how she doesn’t know how I do it evey single day! We talked about how this is not the life we thought we would be living as we enter our retirement years (we are both 58yrs old). Thankfully she is as healthy as a horse but after nursing for 35 years, I had to stop working last May because it was nearly killing me faster than the RA. I was diagnosed 8 years ago and my whole world changed in the blink of an eye. Despite trying over 8 different medications nothing has worked and I have never been in a remission. I have been physically sick and in constant pain for 8 years. It has affected my lungs, my heart, besides the typical joints, it is in my sternum and ribs, neck and spine. Besides the fact that the medications have ot worked, I have endured horrible and serious side effects from them including Septic Shock which put me in the Intensive Care Unit for two weeks and on IV antibiotics for 3 months. Every ” bug” that is flying around I catch from being so immunosupressed from the medications! I say that “I am so sick and tired of being sick and tired” ! And now I am fighting the Social Security System trying to get approved for disability who h is like “jumping through hoops” . From the last day that I physically worked it will take two years for me to hopefully get approval. In the meantime, my loving partner works herself to death to keep us going. Her job requires that she travel for the whole week leaving me to be home alone and try to stay out of trouble! 8 years ago I was full of life, loving and living every day to the fullest, wallpapering, refinishing furniture, doing all my own canining for the winter, caring every day for our four horses and tending to our 100 acres of land. I ran 3-5 miles a night and worked out every other day. I was on top of the world and loving our life together. Then my world crashed in just one day. That was the day that I was diagnosed with RA. I could go on and on, as all of us could….but my life yesterday went from sitting on the couch crying that I could entertain ending this all and then I dried my tears and went. To rad some emails and there lo and behold was your post! I sat there Nd cried more tears but these tears were tears of joy…joy because someone else got! I AM NOT ALONE. It helped in ways that no one will unrest and that there is at least onemoreoerson who is right were I am. So I thank you for all that you do and today is a new and better day. I am getting ready to try an Invesrigational Drug Study but it isnot without trepidation. Every time I try a new drug I hold my breath….that it will work and there won’t be serious side effects. So to all of us with this horrible, horrible disease that 90% of the world thinks is either ” in your head or just arthritis” God bless and watch over us all and pray that something will someday be found to help us. Hugs and kisses to you Kelly.

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    • November 5, 2012 at 3:25 pm
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      thank you so much for taking time to type all that Kate. We are so much in the same boat, many of us. But this disease is isolating and we often feel alone. I know your story will touch someone too.

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  • November 5, 2012 at 4:11 pm
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    rawarrior Wow. I feel like I wrote that. Did I write that? I still feel like the only one until I read a warrior’s post. #Rheum

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  • November 5, 2012 at 5:09 pm
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    Kelly, I’ve been in remission for about a year now, but see a flare trying to push it’s way in. Two years ago, I was severely disabled in all extremities. At that time, my (now ex) husband used to tell me I was “embracing the disease”, “not sticking to my diet” – he would ask me to scratch his back at night, and I would do so as a loving wife, but with tears of pain streaming down my face at the pain I was in. I’d rather have just done what he asked than be faced with another comment that made me feel like a guilty quitter. Now, I am blessed that Enbrel is working for me (or, has been), I’ve divorced the man with the itchy back and I push myself to go beyond what I did before RA. I’ve run 3 5Ks this summer (while on MTX, too!). As this next flare starts up, I am keeping my race tags to wave in the face of ANYONE who might want to call me a quitter if/when I fall back into disability.

    Like most of us who suffer from this disease, the pain of being labelled lazy, overreactive, pain-sensitive, will have to answer to me how a lazy woman with joint damage on chemotherapy was able to push herself into running 5K.

    My wish for you, as always, is that you get a reprieve — however brief — to give you some relief even for a bit. This is a hard cross to bear, and I see in you a woman who has chosen to fight against all odds. Thank you.

    Reply
    • November 5, 2012 at 7:34 pm
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      Hi Judy. First, I stand with you, proud of your hard work! And yes, the pain of being labeled “lazy, over-reactive, pain-sensitive” is an extra offense and I’ve often dreamed of having a response to treatment so I could also make that point as you said, with waving your race tags. Your comment rings so true with me. I’ve often said I feel so responsible to represent those suddenly invisibly disabled in a world where others continue to “expect” the usual from them. And so many times I’ve thought that as I’ve always pushed myself to the limit, if I ever got a remission or a response to meds, I’d demand that others see not I’m not just lazy either. People with this disease do as much as they can and the very minute they get a reprieve, they go right back to the things they love – not evidence they were just being “sensitive”…

      Reply
  • November 5, 2012 at 6:37 pm
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    I’m 53, and have had RA for 35 of those years. Eleven surgeries in the past 4 years–both hips replaced with complications so multiple surgeries there, plus both knees replaced (no complications, yeah!) I live with my parents, 78 and 85, and they take care of me! Neither is much better off than me, but they feel like they are.
    I’m a teacher, and it’s scary how easily the kids will believe I am 100+! A sweet kinder with whom I have never worked recently told me “You look old”, then “You look sad.” I told her thanks for reminding me to smile more!
    Rituxan infusion #2, second set, is Wednesday. Everything else has either not worked or stopped working. I’m not convinced this one is working either. But I’m hanging on, not ready to retire quite yet!

    Reply
  • November 5, 2012 at 6:39 pm
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    I love your post, Kelly! You always seem to capture some part of your experience that resonates with mine.

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  • November 5, 2012 at 8:09 pm
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    Oh, the mental gymnastics I go through to decide how I’m going to answer that question: “do you want help out?” And the worst is when I have ONE bag, and still need help out. And the person pushing the cart is trotting so quickly I rush to keep up and am ready to drop by the time I get to the (disabled) spot where my car is parked!

    Then on other days I can load 4 bags by myself knowing my teenage at home can get it out of the car and unpack it.

    Kelly, thank you for sharing this story. It means so much to know someone else goes through this.

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  • November 5, 2012 at 8:26 pm
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    I can totally relate. However, this is ironically the opposite of feeling really old. I am 38 years old, and last night we met friends at a restaurant. At the end of the night I had the most food scattered around my place setting from having trouble getting food and utensils to cooperate with my painful hands and wrists, and to add insult to injury, my husband had to help me zip my coat like I was three years old. I couldn’t get it started or pull it up.

    Reply
  • November 5, 2012 at 8:44 pm
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    thank you for stating how I feel a lot. I’m 2 years into this mess of RD. I, and my family, have over the years, sacrificed many things to channel me into taking over the family land and farm. My parents sacrificed an early retirement for this, I have worked like mad to keep it going, a huge amount of physical work, for anyone, And then I get RD. Great. I still do more work in one day than my some of my office friends, but I’m no where near the work machine I used to be, and still want to be. When I have a frozen shoulder, I lift with the elbow. When the left hand is swollen, I use the right…Usually I look like an absolute fool, and often this summer I’ve limped through the grocery store getting lots of looks. thats what I do these days, while waiting to get approved for the biologics. Good thing I’m one of those that don’t really care what I look like. In my mind, I have not given up yet to reality, too much at stake, even though I’m pretty sure I have an aggressive form of this disease. And on the once a month days where I feel fabulous, I go for a run after work. But still, there are those days when I dont recognize who I am, and my 72 year old mom works circles around me. And I need to keep explaining my pain, and if I’m real lucky, I have swelling, so I can SHOW them why I’m slower than usual.

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  • November 5, 2012 at 10:05 pm
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    Read your post today and cried. I used to run six miles a day. Do arobic , play volleyball in a league. I got diagnosed at age 53 this time in November I am 55. I feel eighty. Everyday I wake up and think it’s all gonna go away. As you know some days r better than others. I am not always in pain only my foot when I walk. I am grateful for that. I am trying to do things
    That I’ve always wanted to do before I can’t anymore. It sounds kinda morbid. I just want everything to be in order before I get worse. For those of you who are young living with disease I pray for you all the time. I can’t even imagine. I just hope someday there will be a cure. Prayers for all Mrs Apple

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  • November 5, 2012 at 11:54 pm
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    Thank you for sharing this. I am 54 and this has been the worst year ever for me. I am really struggling with the limitations of RA. Like you, I remember what it was to walk and do things without effort. The other day I vacuumed two rooms and had to sit down. And yah, most Octogenarians in good health could kick my butt with one hand tied behind their back. It is strange to have to make peace with issues I never expected to happen until I was truly “old”.

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  • November 6, 2012 at 7:29 am
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    Ugh, the guilt (and jealousy!) I feel when a senior citizen has to do something for me that I am not capable of can be very over-whelming.

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  • November 6, 2012 at 11:34 am
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    Kelly – you alway know how to put how Im feeling into words-I find I cannot think as clearly anymore – and I am forwarding to my mother who continues to as ” why are you always mad at me” – its not that im mad – I am in pain (she just does not get ( she is a spry 76yrold) and it does not matter how much I explain. I am tired of always appologizing!!

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    • November 6, 2012 at 11:00 pm
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      Thank you for your wonderful comments, Kelly. I share comments here on the blog w/my mom to – to help her get it. I think it really has helped since this disease can be invisible & really confusing to those who don’t have it.

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  • November 6, 2012 at 11:46 am
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    Hi Kelly, I have to say that I feel older than my 43 (almost 44) years. I notice it particularly when I spot myself in a store window walking slowly with my stick.
    Grocery wise I’m very blessed here in the UK as I have my big main grocery shop delivered (I shop mainly online nowdays). Usually my kids are here to bring in the bags & they help me unpack and put away, if they’re out then the guy brings the bags right into the kitchen for me.
    My hubby picks up the odd top up bits each evening so I rarely go into a supermarket these days but when I do, usually on a weekend shopping trip when we get our ‘bits’ while we’re out, that is agony. And then when we get to the till and Mark unloads and bags up I feel like a chocolate teapot, useless!!

    Reply
    • November 6, 2012 at 11:47 am
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      I should add that I also feel older when I am all snuggled up in bed or on the sofa with my wheat-bag or hot water bottle & wearing my snuggly robe!!

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  • November 7, 2012 at 3:44 am
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    I totally understand how you feel. This disease indeed makes us feel or appear old. Even when we patients can get past all the “oldness” that surrounds us others can’t look past it. Using a walking aid in public for instance like a walker or a cane. It is very isolating. For just one day to move like I used too….

    Reply
  • November 8, 2012 at 1:34 pm
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    Hi Kelly, I can so relate. I emailed my story in a few days ago and mentioned buying pop. When I had my one and only big flare last winter, and finally went to the store (with open mules, 2 wrists splints, knee brace), I asked a guy to put the pop in my shopping cart. Buy the time it came to paying, I decided to leave it there. How could I possibly load it into my car, drive home, get it out and into my apt.?I have learned to wait for visitors and then I go out and shop. I didn’t know what ‘flare’ meant. After just being diagnosed with RA after my hip replacement last year, I was prescribed prednisone first, bad stomach cramps, then MTX pills, bad side effects. So I tried fish oils and serrapeptase. A few weeks later I woke up with a knee the size of a grapefruit, hands and feet like sausages, and almost paralyzed. My GP put me on MTX injections, and after about 3 months my symptoms calmed down a bit. Since then I tried Arava, Plaquenil, hydro…., now on Humira and MTX. But I still have to be organized during my ‘shopping sprees’. One lady was kind enough to empty the box of clementines into a shopping bag so I could take it. I use two bags on wheels now to put my groceries or laundry in and wheel stuff around.

    Reply
  • November 12, 2012 at 8:54 pm
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    The Young Old Lady
    Early morning rising,
    Sun shinning so bright,
    The Young Old Lady’s grateful,
    After a long painful night.
    Placing her feet on the floor,
    Attempting to stand,
    The Young Old Lady’s wishful,
    For just a small helping hand.
    Approaching the bedroom door,
    Which seems miles away,
    She takes a deep breath,
    And prays for a better day.
    While standing over the sink,
    Squeezing out the paste,
    The stinging in her hands,
    Are due to muscle and bone waste.
    Carefully pressing,
    The water from her face towel,
    She places it over both hands,
    And sigh a little louder.
    Combing her hair,
    And applying make-up,
    This won’t add to her pain,
    If she’s in luck.
    After her struggle,
    To put on her skirt,
    She knows it’s going to be even harder,
    To put on her shirt.
    No heels for her,
    Not even shoe strings,
    For her fingers are also too swollen,
    For her precious wedding rings.
    A look in the mirror,
    All ready to go,
    The Young Old Lady looks at life a lot different,
    And this I know.
    Though elderly on the inside,
    She looks young on the out,
    The Young Old Lady you see,
    Is none other than me!
    By: Barbara Chaney
    *Support Your Local Arthritis Foundation*

    Reply
  • November 12, 2012 at 9:14 pm
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    Oh my, I’m married to that same guy! And yes, I have to scratch his back at night and the pain is horrible. I just have to put up with it because I really depend on him. I try to do my very best, but I’m still labeled as being lazy. I’m so happy for you. I’m 46 years old, I’ve had RA for 3 years and sinking fast. It must be wonderful to be free! I know God has a plan for me. By the way, I’ve written The Young Old Lady poem below in response to another post.

    Reply
  • November 20, 2012 at 8:57 pm
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    I wanted to cry reading all the different post. I have just been diagnosed with RA in July. I finally couldn’t take the pain anymore and I knew something was terribly wrong with me, but my longtime friend and nurse practitioner said it was just bad shoes and probably a little carpel tunnel from writing on my dissertation. Yes, I am finishing a PhD in Nursing. I woke up that fateful day in May with my hands hurting so badly that I couldn’t think of not one thing more. I called my friend and demanded she refer me to the rheumatologist, she finally did. I waited another month for the appointment and then in June was told what I already knew, I had severe RA. My hands were swollen, my feet so swollen I could hardly tie my shoes and forget walking any kind of distance. I hurt to badly. I was to teach CPR that week, I fretted about how I would be able to get up and down off the floor. Thankfully my partner took up my slack and was able to get on the floor and allowed me to teach from a standing position. No one or no thing, not even my years of nursing, prepared me for this kind of pain. Sure, I had RA patients in the past I cared for and listened to their stories but I never understood really until then. Now the things I took for granted like walking a couple blocks seem like just a vague memory. I ask my mother, who also has RA, will I start feeling better if the medication ever works? She said you have good days and bad, not me, I just have bad days and worse days so far. My boyfriend has a new car, when we go out in it I swear he parks a mile away from anyone and I complain because of the extra walking, which he thinks will do me good to work it out. He doesn’t understand it isn’t like a strained muscle that you can work out the pain. My sister, when I say something about the pain, (I try not too, because lets face it no one wants to hear someone complain all the time.) she says she knows all about it because she has had back surgery several years ago. I gently try to explain it isn’t like that kind of pain, but whats the use. I now just talk to mom and refrain from telling my sister anything. I am so happy to have someone who actually does know what it feels like. God bless each of you. I will be looking at these posts to give me strength when I feel down. Thank you each one for sharing.

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  • November 21, 2012 at 9:09 am
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    Theresa I cried reading your post. I hope that by now you’re on medications that will help you some. I would try explaining to your boyfriend that the more you push when you already hurt, the more you’ll hurt. If he is to be by your side through this, he needs to educate himself alongside you about RA and what it really means, how it really feels. It’s so hard for anyone to understand what we really go through, how could they, but those who really care about us will do what it takes to read up and learn and most importantly to listen to us and believe us. I remember doing a first aid course, and the day we did CPR my hands & wrists were so swollen. I told the leader and I did the best I could but I couldn’t put the weight behind the chest compressions and I felt so bad. Over the years I’ve learned not to feel so bad, after all this isn’t of our doing. We learn to adapt & find new ways of doing. I wish you luck on your journey & remember that you are never alone.

    Reply
  • November 21, 2012 at 5:12 pm
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    Maybe we think we have the middle name “Stoic” sometimes. I have tried to keep the RA to myself as much as possible when I started a new job 2 1/2 years ago. Went off the methotrexate and prednisone (after 10 years of it)so I wouldn’t catch every germ I came across and miss work. Continued with pain meds and meds to sleep though to survive. Been through a couple mild flares without catching too much notice at work. Also been getting a rash with the flares the past couple times. But one started in September and has been demanding my attention. Gave in and went to the family doctor for prednisone. I have a love-hate relationship with that stuff. Taking some vacation time to get through it, talked to the boss and admitted what was going on finally. I mean its kind of hard hiding a limp and clawed hands on a pen. Oh and the mistakes from pain and fatigue brain fog! I think she was a little disappointed I had not trusted her enough to be honest about my health currently and she is very understanding as her father has RA. I just don’t want anyone looking at me with pity or the opposite – contempt because I’m not young, hale and hearty. The flares when I need help from my husband to get dressed or showered frighten me. At least its been 3 years since I had one that bad.

    Cannot get in to my rheumy right now. Some patient sold her meds to a friend and that person overdosed, so this wonderful doctor that has helped so many is currently in trouble. Its a rather interesting situation if there is anywhere I can post it here without mentioning his name of course. I have read it is happening to a lot of our rheumatologists all over the country.

    Reply
  • December 3, 2012 at 11:17 pm
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    I had really bad symptoms of fibro, after the birth of my third child. Put down to depression, etc(meaning in my head). I was 30 Arund 10 yrs later i was finally and formally diagnosed with fibro. Given very little help in managing it. I self medicated with alcohol, which led me to AA. Meanwhile, i rediscoverd yoga, which, almost miraculously put the pain somewhere behind me. At 60 i lost he equilibrium i had faught so hard t attain with the fibro. At 62 i was diagnosed with astha (another setback. At 64 ( after 9 months and seven doctors) i was diagnosed with RA. I still managed to go to yoga classes and to teach two (to MS ers and seniors). Last november, i woke up with significant OA. I gave away my last two classes, down from 8-10, pre RA i am so tired and worn out and, as someone else shared, i sometimes wish to die. Most days i plod through ,unable to do my beloved yoga. Or walk more than 2blocks. Or bike. Especially around the holidays, everyone has such unrealistic expectations. I can barely comply. I found i can order cat litter and cat food from Amazon. I’ve been blesses meanwhile with all the helpful people in Wegman’s. a stock person puts the litter in the cart so i don’t have to remove it for the cashier. Helping hand lovves to help, otherwise they just hang around bored. Right now, i have a plan that works. One. Day at a time.

    Reply
  • December 5, 2012 at 1:00 pm
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    Hello All
    I found out that I have ra about 8 months ago.
    I have now lost my great paying job,just could not do it,bad pain.
    I am 58 years old.Walking the dogs or just walking to the mail box is painful.
    My wife tells me that I just feel too sorry for myself.
    Going to the store is terrible.
    I have worked for over forty years.
    Now I cannot.
    Having a bad time trying to get disability.
    I don’t feel sorry for myself,I just can’t do the things I used to.
    I do have a rheumy.Good doctor,very bad bedside manners.
    What do we do?

    Reply
    • December 6, 2012 at 7:25 am
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      Hi Robert, my only real piece of advice right now would be for you and your wife to learn together just what this diagnoses is going to mean to you both. Read up on RA, treatments, maybe join a support group if you feel it would help, but the most important thing to remember is that your are most certainly not feeling sorry for yourself, you have been hit with a massively intrusive diagnoses that is going impact on both of your lives. You are going to need an awful lot of support from your wife if you are going to keep yourself as well as possible. I’m 20 years into my RA & I’m luckily blessed with a very supportive husband, who over the years has seen me deteriorate & has adjusted with me to be as supportive/helpful and understanding as possible. It is hard for your wife to understand what you are feeling and going through as chronic, invisible pain is something that only those of us who live with it can really understand. There is a miriad of good advice out there, this blog, RA Guy’s blog, support groups online and many other good information sources. Being proactive in your care is highly important and learning as much as you can about living with and treating RA is vital. I would suggest maybe for a good starting point that you and your wife read together ‘The Spoon theory’ http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
      Most of all, know that you are never alone, there are so many of us living with this, there is always someone to talk to that will understand and be able to offer advice. Good luck in your journey.

      Reply
      • December 6, 2012 at 9:02 am
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        Thank You
        Just hard to get used to it.

        Reply
  • December 29, 2012 at 3:42 pm
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    Kelly, I can relate to what you said about feeling guilty. I’m always being told I’m “too nice”, in other words I worry about everyone else before me. Now I’m having to rethink that and its hard to do. I’m lucky my hubby is very understanding so he carries the groceries for me. It doesn’t help he’s 12 years older than me and has a heart condition. I get very cranky and want to do it myself even though I know I can’t do it without pain. I’m discovering a stubborn streak I didn’t know I had!

    Reply
  • June 20, 2013 at 6:29 pm
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    Dear Kelly –
    I just read this post for the first time and, yes, I can understand wanting to be able to load Coke boxes into your trunk or schlep them into the house. I am a “senior lady” of almost 67 with RD and I STILL want to be able to do these things myself. Recently my RD has taken a turn for the worse. My MTX and plaquenil are no longer working and I will be going on my first biologic – with much trepidation.
    Like you, my previous self was strong and vigorous. I would attempt just about anything. Heck, 6 years ago I trekked in the Peruvian Andes. I was already symptomatic at that time but somehow, I did it. Now I can’t even lift a grocery bag. With my left hand I can’t lift even a piece of paper without pain.
    I think this desire to get back to the “old self” is a characteristic of RD and other AI diseases that is pretty much universal.

    Reply
    • June 20, 2013 at 9:46 pm
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      Dear Marcia,
      I hope the biologic gets you back some of your normal strong self.

      Reply

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