Rheumatoid Disease Plays by Prison Rules

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Roo bowlingThis is really hard for me to explain. I’ve quit doing many things that I can’t do any more like wash dishes, knit, or paint. I’ve modified the things I do and focused on the positive. So, even I hardly believe it when things like opening my car door or making a bed are really hard. Can I tell you that in public I usually use the handicapped toilet since it’s easier for my knees if it’s not as low? This reminds me of many comments on the blog asking, “Who would fake this?” Yes. Who would pretend their knees are bad alone in a bathroom trying to stand? I think of thousands of rheum patients I’ve connected with, I may have only suspected exaggeration a couple of times.

Today, I thought about how unfair this disease is to the mind.

Roo went to a birthday party at a bowling alley and I had something like an out-of-body experience. I kept experiencing disbelief – maybe because the setting was unfamiliar. My hands don’t look very Rheumatoid-ish, so even I keep thinking they should still work the same.

Titusville is has many vacant lots due to the termination of the Space Shuttle program. We pulled into one of them where the K-mart once was. We drove down to the bowling alley and suddenly the parking lot was jammed. Even the two handicapped spaces were taken, so I circled around and parked around the empty edges. I actually thought to myself, “You will walk fine and you’ve been sitting all day. So you shouldn’t need handicapped parking anyway.”

It was either crowded because the food is great or just because (we know) there are not many places to go around there. Hopefully both, I thought.

Roo had to stand next to the car while I decided how I was going to carry my stuff inside. In the packed bowling alley, I paused, “Roo, look around. Find your friend’s parents and say hello.”

Kids were running passed me. When they brushed against my bag, I literally worried that I’d be knocked down. Needing to put down my computer and camera, I scanned the large bowling alley, restaurant, and bar for a chair. Two types of bar stools. So evil to my knees I’d rather stand. Some sofas at far away lanes.

Roo bowling scoreA few parents were in chairs; there must be an extra chair somewhere… Finally, I saw two spare chairs stacked and laid my stuff on a bar nearby. As I’m sure you guessed, I determined to pick up the top chair to bring it over to where Roo’s party was. I did. I plainly struggled, but I did.

The party went fine and Roo had a great first time bowling. (Score says “Jose.”) I mostly sat, typing a little. The fried mushrooms were really good.

I don’t know. It’s unfair that you can’t “see” the disability or pain of this disease. But visible changes are unfair too. I think my friend Trey got it right, “RA fights by prison rules.”

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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/

19 thoughts on “Rheumatoid Disease Plays by Prison Rules

  • December 3, 2012 at 8:06 am
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    Prison rules! That’s really funny precisely because it is so true! I think most serious diseases play that way – nasty things! I hear you though. I have responded really well to a combination of MTX and Humira and my pain and fatigue levels are way down; I can now count on one hand (that now opens AND closes) the number of joints that have significant pain, but I too would be looking for a close parking spot and chair that will be easy on my back and knees. I would probably ask for help to get it off the stack since my right shoulder doesn’t work worth crap. Bowling, ah, I used to be on a team. I own a ball and shoes. But none of my joints would even consider this activity now. Like you, just watching would be a task!

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    • December 3, 2012 at 9:36 am
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      Hi Leslie,
      I hold out hope of finding med that helps, but like you I dont think my hands will ever bowl. I cannot imagine in a million years or for a million dollars doing that to my fingers. If holding a dish to wash it is hard because it feels like the fingers are coming apart, I cannot imagine holding that 10 lb ball.

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  • December 3, 2012 at 9:12 am
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    I know exactly what you mean…I need to use the handicapped stalls also, not fo r the height of the toilets, but for the grab bars…and if it is occupied, i wait and see who comes out of it and then let them have it…one lady told me i looked fine also, i asked her if she would help me sit in the regular stall and then pull me back up, she said no, why, then i told her, she did apoligize….but it was heartfelt and sincere…people just dont understand what this disease does to someone , espeially someone that is not dependent on anyone…i hate to have my husband do things that i should be doing, but i have to realize that i have been dealt this hand and i just try to go on and struggle with day to day tasks….there is one thing that i do use to help with the pain, it is illegal but gonna make the move to a state where it is…good luck to you….

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    • December 3, 2012 at 9:54 am
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      Perfect timing…I have not been to Rheumatologist yet–come on 12/12. But had a bad flare this weekend, started thursday and by Saturday I was in the bed all day. Sunday was my 14yo son’s b-day so I made myself get dressed and drive 45 minutes to where he wanted to eat- completely worn out–my husband said at the salad bar “did you not feel good enough to put on some make-up?” I told him I did have on make up but no I did not feel up to putting it on. Then later on last night, asked me when I was going to the doctor because he was ready for me to get back to normal–I told him I think this is my new normal. Do you know a good RA for dummies that I can use to explain it to him?

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  • December 3, 2012 at 9:37 am
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    I was born with rosy cheeks. Not those ugly, red-veined cheeks but good rosy cheeks. It is indeed rare that I sport a pale face, only in extremes circumstances. I regularly get the ” but you’re looking so good” response complete with raised eyebrows, if I say I’m not feeling so great. Some days I manage to be gracious and shrug. It’s the other days when I find myself telling everybody that despite my 46 years, I have ALWAYS had rosy cheeks and I land up cursing what should be a blessing. So yes, it plays by its own really screwed up rules.
    Thank you for your very informative n suppportive site. It’s provided a lot of answers, particularly the washing hair thing, I really just thought I was getting extra lazy n going nuts… But washing my hair has become a BIG palaver…
    xx Sharon

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    • December 3, 2012 at 10:12 am
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      funny isn’t it how we all assume it’s just us! and doubt our sanity before we blame the disease!

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  • December 3, 2012 at 9:43 am
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    My wrists have very little motion in them. Regular stalls are a problem just because I need more room because my elbows stick out. I need to set at the end of the row in restaurants. It’s got so I barely notice this now.

    My friend hates to eat out in restaurants because of her troubles with her hands

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    • December 3, 2012 at 10:10 am
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      As for restaurants, I try to find something I can eat with my hands since I have such difficulty with cutting. And I have to sit on a booth instead of a chair since the chairs are usually too small and unstable & that takes so much out of your hips & knees. Something you’d never realize if you didn’t have problems with them. I’ve gone into a restaurant w/relatives & said I have to have a booth & they say no, it’s ok… and force me to sit on a chair in pain. They can’t see it so it’s not really a problem..

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  • December 3, 2012 at 9:57 am
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    I struggle so much with this! I don’t like people making assumptions about me, but it’s frustrating when people don’t see the disease. I always feel so guilty when I need to use the accessible stall, but the toilet is higher and there is a grab bar! I’m dealing with getting my new parking permit and wondering who is going to be judging me, questioning my disability as I am not (this winter anyway) in a wheelchair.

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    • December 3, 2012 at 1:46 pm
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      No one has said a word or given me a dirty look over mine. A lot of times I have walking aids though. You could 1) walk with a cane or increase your limp or stiffness to make it more noticeable if someone bothers you, but I say ignore the looks. I don’t know what I would say to someone who wanted a conversation about it though. The worst treatment I have gotten is over using the scooter/cart things (sorry, mind is blank right now). People can be really rude and cut me off because they are afraid to end up behind me. They make me stop so that they don’t have too. So I avoid using those, but someday I’ll probably have to give in and there have been times I should have but didn’t. Paid for that later…. The worst time I was in so much pain by the end of the shopping trip.

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  • December 3, 2012 at 10:55 am
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    Speaking of judging, I have to tell you about my experience. I had just pulled into a disabled parking space at the grocery store one saturday and was sitting in my car getting organized before going into the store. All of a sudden there was this loud pounding on my window. I looked up and there was a woman standing outside my car. I put down the window and she was loudly screaming at me. Where is your sticker? You don’t have a sticker. You can’t park here! You have to move your car right NOW! I pulled out my permit from the door pocket and held it up too stunned to speak. She then went stomping back to her car, which was behind mine in the traffic lane with the door open, yelling “well hang it in the window!” One of the grocery boys who was collecting carts came up to me and said ” are you all right, that lady was really yelling at you”. My daughter said if she could have seen how I walk she wouldn’t have done that. Unfortunately, my arthritis isn’t the invisible kind. I always have people asking me if I need help because I lurch about when I am walking and sometimmes when I am just standing trying to stay upright.

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    • December 3, 2012 at 2:00 pm
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      Wow! I am really sorry. Doesn’t she know you are not supposed to drive with your placard in your window? I always put mine up after parking (except when I forget). It is not any more your fault if you took the last handicap space than it would have been hers. It just happens sometimes. I do understand getting upset over people who are fine using them, but since it is impossible to know if the seemingly healthy person that gets out of a car is using their parent’s or their own I figure that is the police’s place to question it if they want to take the time to, certainly not mine. I know two handicapped people that use their parent’s instead of getting their own (asking for unneeded trouble since they are both eligible). So I prefer to assume the best. And even if you had forgotten as I sometimes do, not only would your walk prove it as you said, but more than that sick people forget things. Hugs to you, Kay. People should be more understanding.

      Reply
  • December 3, 2012 at 10:59 am
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    Prison rules are really grim Kelly. I guess that filling tins with Christmas cookies might not be your first priority for the season.

    The problem with some booths is that the seats are so low compared to the table top that your shoulders get strained. I now have 2 go-to dishes at my local restaurant – salmon with mashed potatoes and curry chicken with rice. The pastas are too full of ingredients that I avoid. Like you cutting things up is a problem. I can’t imagine bowling anymore but I have the same wrist splints as bowlers use. haha

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  • December 3, 2012 at 11:22 am
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    These posts came at a great time for me. I was just diagnosed in July and am on mtx and sulfasalazine. I’m still working full-time (I’m a hospital pharmacist) but I’m off today. I was feeling sorry for myself. The pain isn’t too bad today, just one bad knee and a swollen wrist and fingers, but the fatigue really gets to me. I feel like such a disappointment to my family. I should be enjoying this time in my life- my sons are grown and I have three young grandchildren. But I can’t do fun things with them like I would like to- no energy. I feel guilty that my husband does so much around the house now with no complaining- he’s an angel. Depressed that I guess I have to get used to this “new normal”. Had to smile about the discussion of bathroom stalls, I love the grab bars in the handicapped stalls. I need a grab bar to get into the car some days. Have to physically lift one leg to get it in sometimes. The holidays coming doesn’t help, I feel overwhelmed. (even though my husband already put up most of the decorations)
    Kelly, thanks for all your hard work on this website. So very informative in so many areas and it helps me to feel less isolated.

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    • December 3, 2012 at 2:14 pm
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      Hugs, Fran. You are not a disappointment to your family. You have a disease and even if someone blames you for it (as some will) they are wrong to do so. You didn’t ask for this. None of us do. Take care of yourself and enjoy the season. It really is the little things that count (like the pretty xmas decorations or someone’s kindness). Thinking about the big things gets your down. And don’t be too hard on yourself for feeling depressed. Those who are ill go through the stages of grief. I find it helps to take things one moment at a time. And of course Kelly’s blog is a big help. 🙂

      Reply
  • December 3, 2012 at 1:23 pm
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    “My hands don’t look very Rheumatoid-ish, so even I keep thinking they should still work the same.” Yeah, I know that one. I am putting off surgery in my thumbs and wrists (may be thumb replacement depends on how bad it is so I am hoping it won’t be bad enough.) And yet even though there is some subluxation in both thumbs (it isn’t even the joints that need surgery and the swan neck deformity that has started is never noticed. I didn’t see it until a hand therapist told me) and I have been seeing a hand surgeon, I still don’t believe the issues I have with them. Point is, they could be better, but I keep thinking I can function like my mind tells me I should. And how embarrassing it can be when we can’t. I was completely shocked one morning when I couldn’t get something from the back of the refrigerator. I was so stiff not only could I not see the back of it (more normal) My wrists refused to bend enough to reach what it was I wanted for my meal. On the one hand I was thankful I was alone instead of around someone who doesn’t get it. On the other hand I had to find something else to eat. :p

    My thumbs/wrists are the reason I can no longer play piano. I keep thinking surgery may bring that back, but recently I have started to see myself as not a piano player. Probably for the best. If the surgery enables me to play even just a little, RD will just take it away again someday. At this point I have zero hobbies. When people start asking me what my hobbies are I change the subject. If they want to talk about theirs I am more than happy to listen. Actually I generally keep conversations on the other person. I learned in retail that most people don’t care what you have to say anyways. And when the highlight of your day is your pain pills working or completing a task like washing dishes or even turning a doorknob, they certainly don’t want to hear about that. Thank goodness for all of you online! 😀

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  • December 4, 2012 at 9:14 am
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    http://www.everydayhealth.com/rheumatoid-arthritis/the-challenge-of-diagnosing-ra.aspx?xid=aol_eh-arth_1_20121201_&aolcat=AJA&icid=maing-grid7%7Cmain5%7Cdl35%7Csec1_lnk2%26pLid%3D240943

    Kelly, I saw this on AOL today. Thought you might enjoy it. They post this stuff like it’s breaking news and of course we all know what this is about. I’ve read about it on your blog. Trouble is the doctors don’t know. Maybe if they start paying attention and listening to their patients and stop with this one size fits all, typical scenario, she would not have had to see “seven ophthalmologists over a period of six months.”I have connective tissue issues and have had this type of stuff for years and kept asking if this could be related. We ought to be given a gold star for coming up with our own diagnoses half the time !!

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  • December 4, 2012 at 5:23 pm
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    I have to tell my story too. I get to my sons school an hour before he is let out. It’s crazy but I don’t have to fight for a handicapped spot. I get to school early and there are two spots open so I pull forward to back into the spot. It’s easier to back in so I don’t take a lot of time when schools out. Plus I don’t want to hit anyone. Well this lady pulls up to my car and starts shaking her head no at me. I just smile at her and continue backing up. This lady unhappily backs up and has to park in the empty spot next to me, and her spot is actually closer. Anyway I put my handicap placard in the windshield. I look over and this ladies grandchild gets out of the car to go get her sibling from school. I couldn’t believe it. I almost felt sorry for her. I haven’t seen her since. I’m trying to think of what I should say next time I see her. By the way I was a little jealous of the grandchild as she playfully skipped inside. The nerve of some people.

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  • March 22, 2014 at 1:55 pm
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    Dear Kelly,
    I am so sorry you are going through such difficulty. I feel like we are common in our goals of raising awareness though I primarily study about neurodegeneration and only lightly about rheumatoid arthritis. I searched your site for the word silica. Have you studied about silica and how it causes inflammation and is in our products and foods? I have a lot in blog. I am not sending you here to raise my stats; I see you are in pain and are wise. Would you prayerfully read over what I have about rheumatoid and see if silica could be causing your disease? http://jesusdiedandlives.wordpress.com
    Thanks. May the Lord bless and keep you and heal your diseases.

    Reply

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