Men with Rheumatoid Arthritis Carry a Heavy Burden | Rheumatoid Arthritis Warrior

Men with Rheumatoid Arthritis Carry a Heavy Burden

Study recognizes needs of men with Rheumatoid Arthritis

A study of 30 Rheumatoid patients indicated that men with Rheumatoid Arthritis may not get the support they need. From my vantage point, I agree. Let’s take a look at the findings of the study, “’It Gets Me Down Every Single Day’: Are Men with Rheumatoid Arthritis Getting the Support They Need?” presented last November at the ACR meeting.

Men with RA: “It Gets Me Down Every Single Day”

Five Guys signFactors that were predominantly female agreed with the following statements in relation to their disease: “Just a fact of life” and “It’s a very small part of you.” However, eight study participants were part of a group more characterized by “It gets me down every single day,” and they were 63% male. My math tells me that 63% of 8 is Five Guys – five divided by eight. (Sorry, couldn’t resist.)

The authors point out “These predominantly male patients are never symptom free, experiencing pain and fatigue daily: It’s like feeling ill all the time,’ they describe fatigue as ‘the worst symptom.’”

Some statements made by men led researchers to conclude that RA leaves them “unable to effectively manage their symptoms,” and frustrated and angry: “I get very frustrated with it, the problem is then I get irritated and take it out on the wife.”

“They report being unable to be spontaneous or to exercise and they struggle to explain their experience to their family. These patients feel their body has let them down, life is unfair: ‘Why me? Why now?’ and the idea that they are lucky in comparison to others is ‘ridiculous.’”

Five Guys screenshotMen with RA need coping strategies

“Interviews with these (5) men confirmed a need to adapt traditional coping strategies: ‘You can’t go and thump a wall because you end up with a flare and you can’t go and kick a football around or anything like that, so you need to find an outlet and talking is the outlet I suppose.’” The men were said to reject traditional “female-gendered” RA support: “The self help groups don’t confront it enough, it might be all lovey dovey [sweet and gentle] but sometimes you have got to be quite hard about it.”

Conclusion lacks teeth

I agree living with Rheumatoid disease is tough, and that men face certain battles that are different from women, and that sufficient support is usually not had for either. Asking questions about the impact of Rheumatoid disease is also a worthwhile investigation. However, the conclusion begs clarification: “Whilst some patients cope well with their RA, others struggle to accept and adapt to their condition; the majority of these being male.”

1) The fact is it is extremely tough for a man (or a woman) to contend with unrelenting pain, accompanied by systemic illness and increasing functional loss. Most people with RA eventually find a way to manage the new normal, as they often call it, but the study authors admit that these men are “never symptom free” and have an average disease duration of 15 years. That’s a long time to hurt, and a tough level of disease activity (HAQ 1.3 and patient global 4.8); it does not make me think they are poor at coping, but that they are trying to live life while seriously unwell.

2) And, some cope well (mostly women) while others just struggle to adapt (mostly men) does seem a broad conclusion to draw based on interviews of five guys.

POSTBLOG: Hamburgers aside (& apologies to Jay), many studies like this are done on a small number of patients. A white paper published this week by the Rheumatoid Patient Foundation studied the experiences of about 1500 men and women with Rheumatoid disease. Not only was the patient population large, but the population also seemed analogous to that of other large patient studies such as those presented by Strand and Wolfe.

Data from the RPF survey was previously published in poster form for the RPF exhibit at ACR in November. Click here to download.

Recommended reading

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 https://www.rawarrior.com/kelly-young-press/

32 thoughts on “Men with Rheumatoid Arthritis Carry a Heavy Burden

  • April 23, 2013 at 5:30 am
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    rawarrior Chronic pain can do that to us. Accepting our limitations is difficult but necessary for happiness and survival.

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  • April 23, 2013 at 8:56 am
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    I’m thinking it’s representative of the entire gender and their approach to health care — men tend to ignore symptoms and “tough it out” because that’s what a man is supposed to do. So they ignore early symptoms until it’s unbearable, and by that time they of course have more damage and a more entrenched disease situation.

    And then, “as men”, they’re supposed to suffer in silence, being strong and impervious to pain, work through it, all that utter bullcrap. So they may not take their analgesics as they should. Because that’s seen as “weak”.

    Not to mention men tend to be in more physically demanding employment than women, where the heavy-duty pain relievers we have to have could cause issues with using heavy machinery, or cause them to fail a pee test, so they don’t take them.

    Then with no one to talk to or vent about it (because men aren’t supposed to have problems they need to talk about), their pain, confusion, misery, fear, and loneliness comes out as an attack on the wife (verbal).

    It’s bad enough being a woman with RA — I’d hate to be a MAN with RA.

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    • April 23, 2013 at 7:03 pm
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      Lorri has hit the nail on the head! We men have been raised to “tough it out”. A man should not be defined by his physical abilities but many of us were raised with that as an integral part of our identity. Men also have the greater tendancy to be hyper-competitive. As RA starts to take away our ability to be competitive, to show off for our mates, it feels like it is stealing our masculinity! My head swells when I can impress my wife and I hear her say, “thats no boy, that’s a man!” Now RA is taking that away much too young. Our egos may be huge but they are often very fragile!

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  • April 23, 2013 at 8:57 am
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    Instead of wife I should have said “attack on their loved ones.”

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  • April 23, 2013 at 9:04 am
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    After living with RA for well over 30 years, I find this study to be down right disturbing. I have been told by health care providers that RA does not cause pain, love that one! As a woman, it is considered catastrophizing when we say we hurt or are unable to do things, while for men, it would be considered real and in need of support, just saying it looks like more gender inequality. We all need support and recognition of disease impact!

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  • April 23, 2013 at 5:24 pm
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    I don’t know how much you can conclude from a study with just 30 participants – that’s a small group, of which you pointed out 5 out of 8 that said “it gets me down every single day” were male.

    I’d be interested in knowing more about these participants – their socioeconomic group, yrs of education, length of time they’ve had RA, marital status, access to healthcare. I think those characteristics would play a role in how someone manages a chronic disease.

    It’s hard for anyone with a chronic disease to openly talk about how it’s affecting them without worrying if they are perceived as a whiner or malingerer – why RA support forums/groups are so important. Most of the RA groups are predominantly women cuz RA affects women more than men, but on the RA forums I’ve been on, the men seem to have no problem writing about their feelings and challenges. The anonymity of an online support group might contribute to that openness.

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  • April 24, 2013 at 1:40 pm
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    Knowing a man who suffered for years, my fiancé passed at a very young age 51 from “complications of RA” RA lung, it was the most disturbing thing I’d ever seen, I had to literally watch him die as Dr’s tried to figure out what to do. He didn’t take his meds like he should have, I believe because then he would have admitted their was a problem. And unfortunately he turned to alcohol and that of course just made it worse for him. Then I was diagnosed oddly with severe RA and several other auto immune issues. Man or woman he robs you of your life and leaves you feeling violated

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  • April 24, 2013 at 1:43 pm
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    ***that’s supposed to be it robs not he robs you of your life**

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  • April 24, 2013 at 2:54 pm
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    Living with and coping with this disease isn’t easy for anyone, regardless of gender. At 34 years old, after 7 years of misdiagnosis, I have been diagnosed with severe RA and then came the medications. As a welder, it gets in my way constantly. Most days I can shrug it off, having been dealing with the pain for years already, but I certainly have my ‘poor me’ and ‘why me’ days, as I have to imagine we all do. The side effects of the medications don’t help much either. I have to hope that as time wears on, my depressed and angry days will get fewer and farther between rather than the other way around, but I also know I have a lot of work to do to make it happen. Very glad I found this site. I don’t feel nearly as alone as I did.
    Thank you.

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  • April 24, 2013 at 5:18 pm
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    Kelly, Thanks for continuing to draw attention to the fact that RA is not just a disease that women fight. There are men in the battle as well!

    And Joie, in spite of stereotypes, some of us men are able to share feelings and challenges! 🙂

    Andrew

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    • April 25, 2013 at 8:00 pm
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      Andrew – I agree! I’ve been on several online RA forums for 5 years now, and there have been men on them openly talking about their life w/RA. A support group with a diverse group of participants – men and women — has more to offer, is more interesting – we can all learn from and support each other.

      The findings of this study of 30 participants however, were that men w/RA don’t get the support they need and that “support that is acceptable to their masculine identifies” needs to be considered. I think such men should consider online support groups. The anonymity of online forums – away from the eyes/ears of family, friends, employers, co-workers – makes them a safe place for not only men w/RA, to open up and write about their feelings and fears, but also women – and thus find needed understanding and support to face the daily challenges of a chronic disease.

      Bill wrote men have been raised to “tough it out” – you could say that’s a stereotype too – I know several women who’ve lived with RA a long time, had major joint damage requiring surgeries, and despite all the challenges of a chronic disease still have a good outlook on life – they are tough cookies too! 🙂

      Reply
  • April 24, 2013 at 7:24 pm
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    As a man, firstly I would never refer to “The Wife!”
    I have pain every day and I resent the fact that it “steals” a portion of my 100% happyness. A good day with no pain is a distant memory for me now. A good day with pain is my reality.I resent the pain part being there as it steals a bit of my 100% but I accept it, C’est la vie! No, it doesnt get me down, every day.
    I would agree that the fatigue is the worst part (for me). To be beaten by something that has no tangiable attributes that you can touch or control is hard to take regardless of gender. Its like “going under” a general anaesthetic and its the fatigue that debilitates, cuts me off from friends, going out and accessing my “support network.” Theres also a stigma with fatigue that is different to pain. Fatigue is often interpretted as lazy, tired, careless and again, not easy to live with, regardless of gender. I never get asked “and how is your fatigue?” But I might get asked “And how’s the pain?” Its not a respected symptom! What I would say is, I have met some amazing fellow sufferers – I wouldnt have met them unless I suffered too. These friendships give me great hope and help in part to overcome the dark times we all get whether with RA or not. We’re all in it together…I think!

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    • April 24, 2013 at 7:46 pm
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      thanks for sharing your amazing comments Cal. Very well said. I hope we both find something that will bring a break to this pain & send this thief packing.

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  • April 24, 2013 at 8:13 pm
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    Ive had RA for at least six years. Im here to say that no one understands what we go through. The pain and fatigue are there every day. A good day is far and few between. Im trying to get disability now and now Im on my second try. No one at work understood and talked behind my back. My poor wife takes care of everything. We have a two year old who is my world. I feel horrible that I cant play with her the way she needs.

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  • April 24, 2013 at 9:54 pm
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    Having finally be diagnosed with RA about 5 years ago I fine the fatique the worst. Today I came home and slept for 4 hours. I really had no choice. The swelling in my hands forced me into retirement and friends just can’t understand it. I look normal but I’m not.

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  • April 25, 2013 at 9:12 am
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    Men are regarded differently in all areas of life and RA is just one of them. I have been a single woman for almost 20 years. I essentially was the man, even when I was married. It was common for me to work two jobs in order to meet obligations, even when I was married. I married a man who wanted to be a “stay at home dad” no matter how much it required me to work. Whatever. I’ve always been a work horse, and never gotten the kudos for being the “man”. In nursing, male nurses are treated differently; not only by physicians and patients, but also other nurses. I have always heard that when men get RA it’s much worse. I wondered about this. It has nothing to do with how the RA affects the man. I believe it has to do with support and expectations. Men are supposed to be strong, and when they are reduced by the RA, it is perceived by others as “such a blow” because men are accustomed to “being the man”. Maybe it’s because jobs for men are often more physically demanding and women’s work is considered to be more sedentary; such as a secretary. Even while doing the same job, men in nursing are always mistaken for doctors, and patients will often refer to male nurses as the “doctor”. I am a nurse, and it is very physically demanding. I am female and now my disease is really making my job more difficult and at times, impossible. My rheumatologist (who is really a great doctor) asked me on my last visit “What about your boyfriend? Can he help you so that you can reduce your hours?” It is always assumed that someone will come to our (women’s) rescue, even when the world doesn’t roll like that any more. For the first time in my life I think I have penis envy. Men and women will always be treated differently in all areas of life. To assume that RA is worse for a man is just another kick in the teeth. RA is horrible for all. People are just more understanding of a man; even if the man is fortunate enough to have an understanding and nurturing female in their life to help them cope. Women are seen as the weaker sex. I feel a double whammy with the RA. Not only are women viewed as the weaker and less respected sex, they are viewed negatively by physicians, as a whole. Take a look at this blog http://predatort.blogspot.com/2007/07/i-hate-nurses.html written by a resident about nurses. The comments made in this blog, though they are mostly derogatory comments about nurses and the unhealthy environment in the medical community, really frighten me. There were over 200 posts supporting the author on why doctors hate nurses, so this is not an isolated case. I have worked in nursing for over 20 years, and I have witnessed it. We, men and women, but mostly women, (maybe because a guy is more likely to punch their lights out) are at the mercy of these people making these horrible comments. It’s scary that these people have the ability to affect the lives of patients. These people are writing in your permanent medical record, and future health care providers are swayed by their words. These people affect how we live and unfortunately how we die. I don’t think these crazy folk have the right to judge the way my disease affects my life or my coping skills.

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  • May 7, 2013 at 3:12 pm
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    My husband was diagnosed 7 years ago and put on steroids and 6 other drugs. It is hardest on him (he’s 58), but I got to tell you it’s hard for me and our teenage son, too. If you could tell your loved ones one thing, what would it be? How can we help? Thank you.

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  • May 12, 2013 at 1:36 pm
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    Really need to find some web sites for men.
    I known that I am a burden on my wife.
    I cannot not hold a job anymore,too painful and tired all the time.
    terrible feeling when you are 59 years old.
    The only time I leave the house is to go to the doctor.
    When I finally do some work around the house,I can hardly walk for two days.
    Thank You.

    Reply
    • May 12, 2013 at 4:16 pm
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      Im in the same boat you are and Im 38. My RA doc is the worst. Im affraid to switch because Im in the middle of dealing with SSD and I dont know if it will look bad and if they will still want to do my paper work.

      Reply
      • June 4, 2013 at 8:47 am
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        At your age be real careful with the ssd.
        I just got approved.
        Hire an advisor,like Allsup.
        They know how to help you.

        Reply
  • May 14, 2013 at 6:42 pm
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    Ive decided to look for a new doctor. Is there a good place to look at for reviews. I do not want to waist my time with another bad doctor.

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  • June 4, 2013 at 7:46 am
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    I’m still the only twentysomething man I’ve ever seen at my rheumatologist’s office, but these comments at least show me that I’m not alone as a man with RA.

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  • July 15, 2013 at 2:01 am
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    This disease is hard for everyone, men ands women. I toughed it out for years because I was afraid that if something was really wrong, my wife would consider me weak and leave me. After several years, the pain and fatigue became overwhelming and I went to urgent care. I was right about my wife and the day I told her my diagnosis, she was gone with her new man. And she took my child. She tried to take everything from me but my stepkids stopped her. I doubt my story is unique. It isnt fun to suffer in silence for fear of losing everything. But I have stories of love and support too, particularly about my friends and my stepkids. Its neither all good or bad, it is life and you learn to forge ahead. Men and women alike. Best to all.

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  • July 16, 2013 at 1:08 pm
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    As a mid 40’s male that was diagnosed with RA this year, this article articulates my fears.

    The overwhelming fatigue I have has redefined my opinion of myself. I’m no longer the man I was. I can already see the changes in the way my wife perceives me as well. I feel that, even though I realize it’s out of my control, that I have disappointed my wife and children.

    I know this isn’t a male only problem, but it sure impacts how I feel about myself as a male.

    Reply
  • October 12, 2013 at 7:41 am
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    I identify with this article. When asked by my counselor to describe how I feel about having RA, I responded that it feels like my body is betraying me; it’s like a mutiny. I have worked my entire adult life and still do. I am fortunate that I am self-employed and have a lot of control over my schedule – this means I also work evenings and weekends because rest becomes necessary during the work day. If I had to be an employed person with a “real” job, it would be impossible – so I am very fortunate in that regard. My house and yard are not as well tended as I would like. My social life is lacking but I do have family and friends. I have always been a physically active person, when feeling well I like to run, hike, play tennis, ski, white water raft, swim, and exercise in general. During a flare, it is a struggle to do a ten minute floor work out three days a week. It’s hard to reconcile it all but maybe finally being diagnosed and receiving treatment will help.

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  • October 12, 2013 at 7:44 am
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    Also, I have to say that the fatigue is the worst part. I have a high pain threshold and while it knocks me off my feet at times, the fatigue is my worst symptom.

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  • October 17, 2013 at 2:34 pm
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    It’s good to see I’m not alone in this fatigue part. I’ve been diagnosed about 6 months and did not expect the tiredness.

    I imagine pain is pain and women definitely can stand up to it, maybe better than men. I work a fairly physically demanding job, have helped neighbors mow their yard, cut trees that have fallen, and get asked to lift and move and replace things at work a lot. I think that expectation, that you will do those things is more associated with men, maybe a pressure that women don’t feel as keenly.

    As others have said, you still look pretty much the same, so others sometime assume you have gotten lazy or just don’t care to help them. I also am on call at my job to do emergency work, it’s kind of hard to tell a dispatcher to call someone else as I don’t feel good.

    I could go on but, but this seems like enough. I am pleased to find your website and appreciate all you are doing.

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  • May 18, 2014 at 10:47 pm
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    Yes I have to agree the fatigue is the worst. What makes it even worse is the ignorance of fellow workers…..I have tried to explain to a few, but they never really “get it”. Sometimes I hit “the wall”, and am literally falling into my keyboard at work. I have been reduced to a job inside, sitting down, and dealing with the general public’s, questions about banking issues. (The stories I could tell!) I would rather do something else of course but physically unable.
    I do some some website work for folks and dabble in some website affiliate work. I would like to pursue…but health benefits at work to awesome to drop currently.
    I am very blessed to have a loving wife who seems to understand, and to have a good job.
    One thing about work is they do honor my FMLA days….however my earned sick leave, vacation leave sometimes is depleted…..So now I have chronic disease, and take vacations with out pay…. However as I said I am grateful to be working!

    Reply
  • November 23, 2014 at 5:35 pm
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    Sorry can’t feel for the the men ,my dad had RA he was tough as a nails and yes I saw him at his worse ,now I have it and don’t wish it on anyone but I feel I’m even tougher then my dad was and men in general are not able to even handle a common cold .

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  • June 30, 2016 at 2:33 pm
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    Hello, Just found the site. Where to start. I am 51 was a motorcycle cop hit by a tow truck. 8 back surgeries and year later. I will say for about 2 years having problems that I put off to old age/injuries then in March had full on flare ups. Pain everywhere and even more in old injured area’s. More pills pain care doctor’s then the test that came back positive for RA. Been on the oldest medicine now for about 5 weeks still getting flare ups but levels off and just feel crappy and tired. Go to the doctor this July 5th and hope they change to something else. But as everyone said when you tell people they don’t understand and day you look ok. It plays with your mind. Don’t feel like doing anything. Good luck everyone. Have a great weekend. Brian

    Reply

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