Thoughts about Schedules & How Evil Tongs & Barstools Are | Rheumatoid Arthritis Warrior

Thoughts about Schedules & How Evil Tongs & Barstools Are

Joy braceletSometimes there’s a weird reason it seems impossible to write – I have too much to write about and I don’t know where to start. There are lists of topics I want to write about and dozens of articles begun that I haven’t finished. Today I want to write about how evil tongs and barstools are, but there is so much else I should tell you about.

The past few weeks months have been a blur. After the computer crashed (September), I got my new Mac just in time to prepare for ACR. After ACR, I worked long days on a HAQ paper (don’t ask – it’s still unpublished – soon I hope to get back to it) and a presentation RPF is putting together for next year’s ACR. After that deadline, we were straight into preparations for Rheumatoid Awareness Day. Immediately after, I worked around the clock preparing for the RPF Annual Meeting, which took place last Friday to Sunday. When I got home, I went to sleep at 6:45.

Monday, straight to preparing for next week in D.C. Add in a couple blog posts, phone conferences, and hundreds of emails… Every night I have good intentions for many good things – but sleep grabs hold of me early.

Who came up with “it’s all good”?

Mostly, it’s true. One: we can make the best of any situation or we might as well try to do so. Two: mostly, these are good things we want to do and whichever ones we can get done will be a blessing somehow.

The problem of no press agent

I usually don’t have time to report back to you the details of what’s happened. I learned the hard way that it’s not always what’s accomplished that matters to people – it’s the story people read about it. Maybe you’ll want to subscribe to my posts by email and The Spear newsletter so you can read whatever I do get written. And subscribe to the RPF’s blog so you’ll get updates from members who write posts about RPF events.

Seeking God’s will

birthday  cheescakeI’ve done some soul searching lately because of the pressure of only being able to get done a percentage of what’s on my plate. The past year had too much pressure and I’ll have to make some changes. The “it’s all good” thing has been a problem. Good things can grow and become too much. Boundaries are important. Yesterday was my birthday. I think the quietest ever. But my mom sent flowers and KB baked cheesecake. MK had already sent a handmade bracelet. It was chilly, but we took a 10-minute walk on the beach just to be sure to touch that base. Now, I’m in the try-to-not-miss-the-plane mode, so more balls will drop. I do miss planes. It takes forever for me to pack (or do anything).

Tongs are evil

Oh yeah, tongs. The kind of tongs at salad bars. Sometimes tongs are the only utensils on a buffet. Heavy tongs with springs in them can be painful and difficult to use if the tendons in your hands are affected by Rheumatoid disease. When I travel, I hope not to meet too many problems with unfriendly utensils.

Barstools are my enemy. A few years ago, I bought two bar stools. Pretty ladder-back ones. Then the Baker’s cysts started in my knees – my first perpetually swollen joints. For a long time, they didn’t hurt (the knees did but not the cysts). I’m pretty sure they’ve been swollen three years now and hurt for two. Standing hurts and sitting hurts. But barstools or anything that makes my legs hang is a type of torture.

Two little things that I’ll try to avoid to I can keep moving the best I can. What about you? What’s a little thing that looks so innocent, but could cause you great pain?

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/

40 thoughts on “Thoughts about Schedules & How Evil Tongs & Barstools Are

  • February 22, 2013 at 1:15 pm
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    I am right there with you on the “too many good things” that I can’t do them all! I suppose it’s a good problem to have, but it makes it super hard to prioritize!

    I have to comment on the “it’s all good” saying. A number of years ago, I was in a Bible study and we were studying the book of Romans. Eventually, we got to this verse:

    “If God is for us, who can be against us?” – Romans 8:31

    One of my friends in the group made a comment that has stuck with me ever since. He said, really, that verse is the epitome of the saying, “It’s all good.”

    And really, it is! Even when things are bad, even when we can’t do the things we want to do, we know that God is for us, weaving even life’s tragedies into something beautiful so that we can truly know: It’s ALL good.

    Reply
  • February 22, 2013 at 2:01 pm
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    I will comment that one thing that is hard for me is the cans that have the tabs for you to pull open. Who came up with that idea? And the pesky foil wrap pills you have to cut & pry out. Right now my nodules on 2 fingers close together make it hard to hold a utensil. I hope to have yet another surgery in early spring to get some of these nodules off to make it easier to do things.
    You are inspiring Kelly with all you do for the fight against RA disease, the energy it must take I know I wouldn’t have. I thank you for all you do & have done.

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  • February 22, 2013 at 2:03 pm
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    Oh my gosh you are so right. Salad bar tongs are terrible. I also hate that some eating establishments have the silverware with the really thin handles. Also bar stools and the tables and chairs that are made for people that are all least seven feet tall. And don’t even get me started on how evil ziplock bags are.

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  • February 22, 2013 at 2:06 pm
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    Kelly you were me out just reading all you do. Every time I read a page your subject matter is right on the button! Them dang bar stools kill me! Can’t do that. Your so busy get more help. I wanted to ask if anybody ever had lower back surgery? My Rheumy sent me for MRI and her office has called twice now for me to have surgery! I have two sisters that have had back surgery and Thier no better! So I just don’t see why I should put myself thru it. I had cortisone shots which were so painful for two days and then felt like a new person! I just can’t do it again! I’m so tired of the pain! So now I’m going Monday for a epidural. I asked if it was painful and they said yes but they offered sedation. So I’m signed up for that! Anybody ever had that procedure I would love to hear Thier experience. Thanks for your hard work Kelly! Your blog keeps me goin cause knowlege is power! Also I would like to say its Not always Good!

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    • February 23, 2013 at 12:29 am
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      JudiB,
      I had back problems off and on for years and then finally “tweaked” it enough that it was horrible everyday after that. I had general achiness, pain and spasms in my whole lower back and sacral area. Once I “tweaked” it I had sharp shooting pain down one leg that would come and go and was not realy as painful as everything else…. That’s what worried the surgeons. They felt with an MRI that showed a buldging disk and some spinal stenois that they could take away the sharp nerve pain but not necessarialy all of the other. Of course, I’m in so much pain that I am willing to try anything, but they were very worried that I would be going into surgery and be disappointed because I may still have the generalized pain over the low back and sacrum. Then it got to the point that the nerve pain was not going away so they finally did the surgery (just did a discetomy/laminectomy and no rods)and as predicted, the nerve pain went away. The other pain was gradually getting better and I was recovering and starting to feel good when I started wondering what was going on with me!?!? I was sooooo fatigued in the mornings and my hands were stiff and sore when I woke up, but then by mid morning and some days not til the afternoon, I would feel great!!!! Thus the beginning of my 5 month trek to discovering that I had RA (I’m RF seronegative, but finally I figured it out on my own and begged my FP to draw anti-CCP….which came back the highest they had ever seen). So, my back surgery was successful and I was very glad we did it, but from my understanding, it all depends on where your pain is, what surgery they are proposing, and what your expectations are. If you have no evidence of nerve involvment,or spinal stenosis, the surgeries for just ruptured or buldging discs taht might be causing generalized pain can get a little more iffy on success since back surgery does not take care of the generalized chronic low back pain predictably. As a bonus, it can take care of that pain sometimes, but it does a much better job of fixing nerve pain (shooting down one leg or another, numbess in a portion of your leg or foot, etc). Good luck. I had a lot of success the first few times with the epidural injections. Remember that anxiety and fear can affect how you react to some of the procedures or surgeries, so if meditation, hypnotism, valium or anything else can help your fear going into a procedure then you are less likely to have pain with it and it is likely to work better. I have an advantage….I’m an OB nurse, so I have very little fear about someone sticking a needle in my back for pain relief…. I also dontate blood, so have gotten over any fear of needles (good since the self injections like Enbrel can HURT!).

      Reply
    • February 24, 2013 at 6:22 pm
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      Hi Judi, in regards to epidurals, they aren’t so bad: I’ve had 6 for L4 and T10 disc herniations. You will feel a little sore for a few days but not terrible. I really wasn’t terribly thrilled with the results; expected more pain relief but it helped some for maybe a month or so. As far as surgery, I guess it depends on what your issues are. They have never offered surgery to me for my problems. MY 33 year old brother has had his 3rd back surgery and he is feeling much better. He had a lot of sciatica and walked around in a hunched position for 6 months until he could get insurance. His problem is that he overdoes it and he has DDD which will only worsen with age as do most of my siblings (only 1 out of 6 has not had disc herniations or bulges). My back pain started about the same time as my other joint symptoms and I still would like to know if the RA caused the back problems or if they are 2 seperate issues? Best of luck to you with whatever you decide to do. Just take it easy a few days and use the ice packs after the epidural and you should be fine.

      Reply
  • February 22, 2013 at 2:06 pm
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    rawarrior Nearly-empty tubes of hand lotion are evil too! Not only are my hands dry, but trying to moisturize is hurting them!

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  • February 22, 2013 at 2:29 pm
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    Tongs and barstools indeed! How about gas stations that don’t have those little notches on their nozzles so you have to squeeze the whole time. And I try to avoid Windex… the whole scene. Oh the product itself is fine… it’s just squeezing the trigger and wiping the mirror or glass that kills my wrists!!

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    • February 23, 2013 at 7:02 am
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      I hear you. I rarely go out alone, but yesterday I did and I needed gas…and I simply couldn’t hold the pump handle long enough to fill up. =(

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    • February 23, 2013 at 7:06 am
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      Happy Belated Birthday, Kelly! Praying for all you have on your plate right now. Thank you so, so much for all you do for the rest of us – you are a gift. Love, Patricia

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  • February 22, 2013 at 2:38 pm
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    Little things: my daughters hair elastics. I suffer every time. …and it is so worth it!

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  • February 22, 2013 at 3:19 pm
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    I can’t believe you can get everything you do,done. Your website saved my sanity. I’m 70,and didn’t appreciate getting RA.I’m close to my 5 year anniversary from having uterine cancer,and suddenly my joints started hurting.I limped to doctor and she took some tests.I was fortunate enough they showed I had RA.It was the worst pain I’ve ever had. I would’ve thought I was being crybaby until I found rawariors. I read for many hrs.and I thank God this wonderful site.I’m a retired nurse and did not take care anyone with RA,but I don’t believe in treating anyone like some people with RA have been treated. The biggest reason I’m commenting is I’ve been reading everything and I haven’t found out how you are doing on your new treatments.

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  • February 22, 2013 at 5:03 pm
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    Boy..I sure can appreciate your comments on bar stools…but any chair that has my feet lower than my hips totally exacerbates the swelling and pain.
    I have Lupes, RA, Sjogrens and Raynauds and it hard to detemine where one ache starts and the next pain begins. My recliner is my best friend..Oh..did I mention spinal stenosis?
    But do you know what? I was diagnosed 2 years ago..went through the “pity bag”, “PO’d, and now I am in he somewhat acceptace mode. I need to find a peace within myself to work against these. Having a good attitude is a great blessing.
    I wake up full of stiffness but my son helps me make fun. I love it. I tell him I am doing the “fankenstein walk” and we do it together, and we laugh and laugh.
    It is not disrespectful but really totally fun. He is a great kid!
    I try to laugh through alot of stuff…my son (13) is wonderful!! Blesse are we to have children.

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  • February 22, 2013 at 6:46 pm
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    The total irony…the thing I hate is caps on medicine…once I get a friend to open the bottle for me, all medicines go into the same arthritic cap bottle. it’s good i don’t have young children in my house!

    Reply
    • February 25, 2013 at 9:34 am
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      Hi. Here’s a tip that may help you open those product or grocery bags. Moisten your thumb and index finger (I just use spit…after all, it’s my bag) and rub the two layers of bag together near the top, but not quite at the very top. The front and back of the bag usually separate pretty easily for me when I do this, but it probably depends on how your hands and fingers are feeling that day. Good luck and best wishes for feeling well today.

      Reply
  • February 22, 2013 at 8:33 pm
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    Here’s one that’s really been getting me lately: the plastic bags in the grocery store that you put vegetables in. Separating the two sides in order to open the bag – yow! Did they make them much more difficult to open ?(couldn’t be changes in me, could it?) And as someone else noted, gas stations are very problematic. I recently had to ask someone at a neighboring pump if they could unscrew the gas cap for me- I could not twist my hand to open it and had so little gas I could not get where I was going till I got some gas. Btw, the person was very nice, as they usually are when I need to ask for help. But I don’t like having to do it…

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  • February 23, 2013 at 12:08 am
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    What about the Zip-Loc freezer bags that are inside the hot melt glued packages of frozen meat? I have to saw the end off the carton with a breadknife and then slice off the ziploc end of the bag. I have pliers and exacto knives in the kitchen drawer

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  • February 23, 2013 at 12:41 am
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    Kelly, thank you so much for your honesty. I am so glad to see that even people who appear to have it all together are not perfect. I have such a daily struggle to get the simplest things checked off of my list.
    Things I struggle with…..still cannot get the hang of the handshake without cringing. I love shaking hands with my rheumy….he very gently offers me basically a brush of our fingers…..and then turns to my hubby and gives a full grip handshake. And I used to be proud of my firm handshake!
    I agree with medicine bottle safety caps. I hate when I pull open a door and the person behind me kind of expects that I will hold the door for them. I cannot hold a dooor backwards one handed like I used to. We just got these new IV pumps at work that have pretty stiff buttons…..I have a hard time pushing stiff buttons repeatedly. And clapping!!!! How do you express appreciation, without banging your aching hands together? I have gotten pretty good at a different version of a clap so it at least doesn’t look like I’m the only one in the group not clapping. I gently clap the fingers of one hand onto the back of my other hand (no palms involved). Doesn’t really make much noise, but at least shows the visual effort.

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  • February 23, 2013 at 6:16 am
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    Kelly,
    The “little” thing that causes me great pain is trying to get the veggies out of the crisper in the fridge. Kills my lower back and hips every time. I try not to constantly ask my son to reach for stuff, even though he’s happy to lend a hand. Last week my wife and son where both down with terrible sinus infections and I was on my own trying to keep them comfortable. After last week I have one more “little” pain to get by with and that’s the knowledge of the hundreds of little kindnesses given to RA’ers as part of their daily lives. We owe so much to the selfless devotions of the ones closest to us who diligently and with out reward help try to make our daily lives better. One thing I do to repay is to cook the majority of the meals in our household. And unless I’m completely incompassitated, I wake early to fix my son his breakfast before he goes to work. This is one kindness I’ve made the greatest effort to fulfill, because I know sooner or later he’ll have to spend his time taking care of me. I wish we could place more enfices on the countless helpers out there who devote their time and energy to us.

    I really like your blog Kelly, it’s a safe place to express our trials and triumphs.
    Thank You,
    -Roger

    Reply
  • February 23, 2013 at 9:53 am
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    I am short and have never liked barstools, nor this trend of counter height tables. The world is not made up of basketball players.

    The trick to opening the veggie bags at the grocery store is to lick a finger, rub the bag end between that finger and anything else, and it will open. Then of course you HAVE to put something in it and buy, can’t leave it lying around because it’s nasty. But it works. I don’t know what the trick is to ziploc bags, I am starting to avoid them lately. Chip bags and any plastic bag that you have to pull open, those are things I just stab and cut now. Pull tabs? I grab a knife for a lever.

    For me the worst place is work. Every thing nurses do is fiddly stuff, and so the next time y’all see a nurse making weird faces trying to get your pills out of the little packets, just smile. I can’t cuss up a blue streak in front of patients so I’m trying to get stuff done, just humor me (and many others like me). We’re working hard to get our house paid off in anticipation of the day I am only fit to try to give flu shots to people occasionally instead of work full time.

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  • February 23, 2013 at 12:12 pm
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    Right up there with bar stools are the chairs at the lab I go to for blood draws. They are high, and the bar for your feet is tucked under the seat a few inches. Some days my knees just don’t bend enough to get my heels on the bar. How about the car wash? Holding the trigger down on the nozzle for a couple of minutes is excruciating. Good thing I can stand a dirty car! Windows, mirrors, wiping down the fridge, any of that is hard if my shoulders are acting up. I have learned the hard way to buy smaller jugs of laundry detergent.

    For those of you who have mentioned pill bottles, the pharmacy will put prescriptions in bottles with non-childproof caps. Just ask.

    Finally what’s up with all the nurses on this and other RA sites? Are nurses somehow more likely to develop RA?

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  • February 23, 2013 at 12:45 pm
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    Yes, those terrible veggie bags in the produce section–argh. I am going to save mine instead of tossing and bring them to the store to reuse so I don’t have to stand there trying to open them.

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  • February 23, 2013 at 3:23 pm
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    Spray bottles; and even perfume bottles–I can barely press them. Toothpaste–I have to use my elbow to squeeze it out. I agree about the cans with tab tops, too–I push a wooden spoon through and try to pry with that. I vowed I wouldn’t buy things in cans any more…

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  • February 23, 2013 at 11:10 pm
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    The smooth, tulip shaped glasses that seem to be used in every restaurant lately are the WORST THING for weakened arthritic hands. They are so smooth to begin with, and then with some melting ice and condensation on the outside, they slip right out of my grasp. It’s soooo embarassing!

    I look at them with fear and trepidation!!

    Reply
  • February 24, 2013 at 6:43 pm
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    Does anyone have a solution for flossing teeth. The Dentatape I love is just too thin and painful. Also has anyone found a solution to the skinny toothbrushes, even the sonicare toothbrushes are too thin for my hands. I struggle trying to keep a clean smile. Am using more mouthwash and use gauze to help floss the teeth so i don’t have to brush so long.

    Reply
    • February 25, 2013 at 11:10 am
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      I use the Crest spinbrush that is much bigger than a regular brush. It works for me. I also use the floss holders. They are small but I find them easier to grip that the floss itself. Might check with your dentist to see if he knows of any specialized tools. Good Luck!

      Reply
  • February 25, 2013 at 11:05 am
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    I drove to work one day then drove home that afternoon, pulled into the driveway, but I could not put my car into park or release my seatbelt! I had to honk the horn to have my son come outside to put the car in park and to push the button on my seatbelt. (Yes, honking the horn was painful too!) I am now afraid to drive to work where there is nobody to do that for me!

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  • February 25, 2013 at 2:44 pm
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    Thanks again Kelly for all you do, all you manage to get done, & the way you bring us all together to help each-other normalize. My problem is stairs, any stairs. I am one of those that doesn’t visibly suffer from RA, but the minute, the second that my knees bend or straighten they make the most got awful crunching grinding sound. People actually look around to see what it is. Yes, it hurts, but I’m used to it. What I’m not used to is having people make a huge spectacle of it. Ugh. I also hate push button seatbelts and the way my fingers stick in odd positions if I hold anything too long. I look like an android having to manually adjust my fingers back into a “normal looking” array of digits.

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  • February 25, 2013 at 7:17 pm
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    What I have run in to are problems when my wrists are too weak. Turning the key in the ignition of the car (had to use a wrench). Twisting off any sort of screw cap on a bottle (especially if it has the little sealed tabs that strong people can just twist right apart). Anything with a handle and weight…any sort of pitcher for water, etc., any pot or pan with just one handle that needs to be lifted off of the burner when hot. I have scores of tools that are great helpers around the kitchen, for those with or without RA. I will photo and post them on my blog in the next few days. They have been life-savers.

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  • February 28, 2013 at 5:12 pm
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    The produce guy showed me a trick to open those plastic bags — wet the tips of your fingers w/the water that most produce sections mist their vegies. As for pumping gas, in some states if you have a disabled placard, a gas station worker can help you pump gas. You have to go to a place tho where there may be more than one worker, also if possible pick a weekday or time of day, when they wouldn’t be too busy.

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  • March 1, 2013 at 10:29 am
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    Putting on makeup, cooking (especially baking, which I love), and writing anything! My hands are my biggest problem, and boy does that make everyday life difficult sometimes! Thank you for this blog and website!!!

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    • October 23, 2013 at 9:08 am
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      cooking and baking for me too. It’s the clean up that gets me. Washing dishes is almost impossible now. I really miss it. (baking, not the dishes lol,) I haven’t worn make up for about 2 years now. This coming from a woman who wouldn’t get the mail without a full face on! Priorities how they change. I fantasise about having a make over. Hair and make up and nails. But then I think, where the hell am I gonna go all dolled up? LOL!

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  • March 2, 2013 at 8:14 am
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    The teeth flossing gets me too! The last dentist I saw recommended the flossing stcks but I can’t hold them :(. Haven’t seen a dentist in a loooong time as they don’t want to mess with the RA and corresponding TMJ in my jaw. Turning he key to crank the car is a little thing that’s painful for me as well as reaching out of the car to check t he mail or to get the little capsule at the bank! It’s funny the things we get used to and don’t think about anymore. My daughter (now 16) said she was 12 before she realized that adults COULD run , it’s just me that couldn’t. Lol

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  • March 7, 2013 at 11:27 am
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    My nemesis is finger nail clippers. Holding and squeezing them is havoc on my thumb joints. After that, any packaging like the bags inside cereal boxes, frozen pizza wrappers, microwave meals, etc. I use scissors to open all those things now, but even this scissors can be challenge on some days!

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  • March 13, 2013 at 5:21 pm
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    Definitely bar stools-I dread them. Also, having to walk down steps when people are behind me while I slowly limp down one by one while holding the rail. And what about trying to grip a sewing needle! Sheer torture.

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  • May 8, 2013 at 3:13 pm
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    Computer mouse and mouse pad for RA sufferers. Does anyone have any recommendations? I currently have a gel mouse pad with wrist rest but it hurts and adds pressure to my wrist. The mouse I have has a scroll wheel and that irritates my right index finger. Any ideas would be welcomed.

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  • October 23, 2013 at 11:58 am
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    I agree that tubes and bottles are difficult to get the product out. As I finish difficult to use items I replace them with the pump once type dispensor. Makes life easier to get rid of the things that make us frustrated…. at least in our own homes. My favorite are the self dispensing ones, until the batteries need replacing, but that’s the hubbys job. ; )

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  • October 25, 2013 at 9:57 pm
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    Yes, I use and love the Crest Spinbrush, as well! Sometimes the vibration is a little bothersome, but mostly so much better than regular toothbrushes! For someone with a smaller size mouth, like a lot of women 5’6″ and shorter, a kid toothbrush might do the trick! A lot of kids’ brushes, with cartoon characters and all, have very chunky handles. Some are labeled “soft” and some are “extra soft”. Watch out for that because the extra soft ones likely will not clean an adult’s teeth.

    My pet peeve little thing (although I agree with just about every one from everybody else, as well!), is the squeegee at the gas station. Trying to clean my windshield of bugs with the squeegee on a stick is horrible! I wind up holding it in all sorts of positions, usually pushing on the stick with the heel of my hand or my forearm perpendicularly, to get enough force to get the bugs off. Most of the time I drive alone, so I cannot ask someone to do it for me, but living in the lush mountains of the Carolinas leaves my windshield too covered in the little buggies to just ignore. I hate when I have to do this. Sometimes my hands get so worn out it is very difficult to drive afterward.

    Also, trying to use my iPad during a more sensitive finger day. I feel lucky to have this little device, especially for web surfing. Just lightly touch the screen to do what you want, but some of the controls are a nuissance. I have to swipe across the screen with four fingers to move between programs, or apps as they are called now. That can bring on pain where there was none before. No other easy way to do it! I have even tried using those little touch pens but they’re so small and difficult to grasp and I keep losing them! Someone needs to build a chunky touch pen for handicapped people! Probably sell like mad!

    Reply

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