Rheumatoid Arthritis Support: My Nicest Examples

Rheumatoid Arthritis support: 3 sources

This blog is about the nicest thing that someone has done for me since I became ill with Rheumatoid Arthritis. It’s not tough to decide, but it’s tough to talk about.

First, there are some honorable mentions.

1) There’s that first good doctor who confirmed my diagnosis of Rheumatoid Arthritis. Support from the doc and nurse was generous. They treated me like a fragile flower that they wanted to preserve. I was handled gently and spoken to kindly.  The nurse carried my bag and the doc put my shoes on and off for me. Doc prescribed an aggressive course of disease treatment and made sure that it went through the insurance approval quickly. For 2 months, they kept tabs on me over the telephone while an insurance problem prevented paying for an in person visit. They got 5 gold stars.

2)  Except for my kids who see me every day, my family and friends do not understand how I have been affected by Rheumatoid Arthritis. Support is not given because they don’t realize how much I am limited in what I can do or how much pain I live with. They don’t understand why I no longer garden or build things or write letters. However, my mother knows that I‘ve had tremendous pain in my feet since I was 15. When the doctors could not find a cause, she would always mention her mom. My grandmother had plantar fasciitis and nodules that were painful to stand on. I think that helps my mom understand that my feet hurt even though she does not understand my Rheumatoid Arthritis. Support meant sending me large thick gel mats for my kitchen floor. It has been the best present for someone with Rheumatoid Arthritis.

3) Some special friends who have Rheumatoid Arthritis support each another like no one else can. There have been several special people who befriended me in the last year and have shared my journey. They open up their hearts to me and are always willing to listen. They never doubt me or try to one-up me. They genuinely want to know about how I feel and apply gentle pressure to get me to take good care of myself and keep fighting RA. Life would be harder without people like that. And it’s much more blessed with them.

My biggest Rheumatoid Arthritis support…

Without question, the prize for the kindest and most generous support has to go to my kids. They had to reverse roles and start taking care of their mom a couple of decades ahead of schedule. Each one has made special efforts, but I especially must mention my daughter Katie Beth. It’s not just that she makes dinner most nights without complaint. It’s not  just that she sits in on every doctor’s appointment with me and carries my purse everywhere I go.

I could not manage without that support, but there is more. She has decided to attend college locally until or unless I’m well enough to do more for myself. I told you this was hard to talk about. The last couple of years I’ve wrestled with this. The Rheumatoid Arthritis continued to progress, but I continued to insist that Katie Beth have the same opportunities as her older sister. People who don’t understand pressured me to pressure her harder to go away to school.

After a lot of tears, I’m trying to accept that Katie Beth will have different opportunities, not fewer. Like her sister, she has earned a scholarship that will open many doors. However, she has already walked through one door that many people never do, learning to care for others as much as herself.

:star: :star: What is the nicest support anyone ever gave you because of Rheumatoid Arthritis?

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

50 thoughts on “Rheumatoid Arthritis Support: My Nicest Examples

  • July 19, 2010 at 8:33 am
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    She had a good teacher & no I’m not talking about school:)

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  • July 19, 2010 at 9:07 am
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    You have an amazing daughter! She may be giving so much to you, but you know, she is getting much, much that is molding her into an incredible human being.

    I am going to look for a gel mat…never heard of that!

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    • July 19, 2010 at 9:37 am
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      Joan, I was too tired to take a photo of the gel mats last night. They sell some at Bed Bath & Beyond & more colors & sizes online. They are so good for hurt feet.

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  • July 19, 2010 at 9:14 am
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    Kelly what a wonderful blog today. I can honestly say the nicest thing to happen to me since I got RA is RA Warrior, you and the special friends I have made. Without this group, I would be lost.

    Your daughter is one special lady. She must take after her mom with her kindness and support.

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  • July 19, 2010 at 9:18 am
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    Katie Beth sounds like she’s learned a lot about caring and giving from her mom. 🙂

    My husband is my rock. He doesn’t require explanations or excuses. I just tell him how I’m feeling and we roll with it.

    My brother understands more than anyone, I think. He has Fibro and an as yet unidentified autoimmune disorder. We can always get together to commiserate, gripe, and swap ideas that help us lead a more comfortable life.

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    • July 19, 2010 at 9:41 am
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      Mary Kathryn, it must be wonderful to have them “get it”!

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  • July 19, 2010 at 9:29 am
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    What a heartwarming post Kelly! I agree with Dixie that she must have a very good teacher. I am glad you have some true people who care for you and your needs. We all need them in our lives but especially with RA they seem to be even more valuable. A good friend who is honest,caring and always has your back is a keeper, especially when they are good listeners! Katie Beth you are a extrodiary girl and of course gold stars to you!

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  • July 19, 2010 at 9:30 am
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    OOOOOOOOOOOh Kelly YES.. you have the GREATEST of all gifts (from God and) from KB. She is not “putting off” her scholarship and schooling.. she independently choosing to grow in patience, self esteem and kindness. There is time for her, and there are more important things than a scholarship for her. You will see and she will know.
    I do not believe she is “putting off” anything. I believe she is “putting on” the walk and the talk and the spirit that will be with her the rest of her life and afterward. Thank you for enabling KB to be the gift she means for herself to be and, no , I do not think it is a deviation from her education.. but moreso an evolution of her soul.
    There is much love and appreciation in my heart for what you do and for those who “sponsor” you. Give yourself and KB (and of course Roo and sibs) a fuzzy blanket cuddle hug from me.

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  • July 19, 2010 at 9:34 am
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    Heloo Beautiful Kelly. I love this post! You are so very lucky that your children, especially Katie Beth, are growing up to be such caring young people. It warms my heart to hear that you have that support from your kids. I was fortunate enough to have my kids understand right from the beginning what I was up against only because unfortunately my mother-in-law had RA and they saw first-hand what it does to a person. At 7 years old, my son was brushing his 4 year old sister’s hair every morning…… and they both brushed mine. It’s little things like that that mean the most. I’m happy that you were blessed with your children and I pray for understanding from the rest of the people in your life.

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    • July 19, 2010 at 9:43 am
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      What wonderful thoughts, Angie. I remember Katie Beth working on my hair during the months I couldn’t do it. They have been like little angels about this.

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  • July 19, 2010 at 9:52 am
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    Wow! you are too kind Momma. You showed me how to care. :heart: :heart:

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  • July 19, 2010 at 9:53 am
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    I don’t get alot of support but i will say yesterday a special lady i have known my whole life said to me, “I have arthritis but i couldn’t even imagine the pain you go through having RA” i wanted to hug her so hard..lol finlly someone besides my kids understood…

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  • July 19, 2010 at 10:37 am
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    I was so blessed to read about your daughter. God has certainly blessed you greatly and He is blessing Katie Beth too. What a great gift to know how to give compassion as God only can. Thanks for sharing your life and your heart.

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  • July 19, 2010 at 10:48 am
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    This just defies logic in so many ways.

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    • July 19, 2010 at 11:43 am
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      Hi Joanne, I dont understand your post….. What do you mean by it just defies logic. Im confused?

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  • July 19, 2010 at 10:53 am
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    Oh Kelly, I think this is the one of the most special things that has happened to me…finding your support group yesterday! :present: What a blessing to know I am not alone. I was just diagnosed last October and one of the sweetest things that someone did for me was from a good friend who came to spend the night and cleaned and reorganized my tack room to make it easier for me to take care of my horses. I smile every day when I enter it! Much love to all, Nancy :heart:

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  • July 19, 2010 at 1:01 pm
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    Kelly, I have to say the nicest people to help me has been my doctor and her wonderful staff,
    But I want to thank you Kelly for this so so informative blog. Since my Ra is for right now anyway, more mild than most on this blog, it has given me a better understanding for others as well as myself. Again I would like to thank you. What a special daughter you have in Katie. She will never regret helping you.
    Help, now that is a BIG WORD for us warriors. It makes me crazy to ask for it.But this is another thought for another time.
    May God Bess And Keep You and your lovely family.
    Steph Munson

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    • July 19, 2010 at 5:53 pm
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      Hi Steph. I’m glad to hear your doc is treating you right & your RA is still in the mild range. Katie Beth is sure blessed to read all these lovely words. 🙂

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  • July 19, 2010 at 2:12 pm
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    My husband has been my biggest hero and my greatest support through my years with RA. I don’t know how I would survive without him; he has been known to come home from work to open a jar for me. Now that my boys are getting older they are becoming super helpful as well.

    I have a friend at church whose mother had RA, and she is such an encouragement to me, just in her kind words and little notes.

    Honestly I haven’t run into anyone who has treated me unkindly or impatiently. I am extremely blessed with a good support system. 🙂

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    • July 19, 2010 at 5:57 pm
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      Erin, my experience & what I usually hear is different from that, but I can truly say I’m blessed to know that you have been treated properly. It gives me hope for the rest of us. :heart:

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  • July 19, 2010 at 3:14 pm
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    What a nice post, Kelly.

    My nicest things have come from my wonderful family. My husband is always there for me, even when I say I’m fine because he can tell I don’t mean it. After 24 yrs of marriage, he knows how I’m feeling just by “looking at my eyes” as he tells me. After work, he cleans, cooks, shops, runs my epsom salt and lavender oil baths, and encourages me all the while. My two oldest children run errands for me and help with chores around the house – from gardening to washing the dogs. They take my youngest daughter, who is 15, shopping or out to eat to get her out of the house during the day once in a while when my husband is at work. My youngest is a wonderful cook and actually enjoys it (I never have). I love hearing her humming as she cuts and chops in the kitchen (we’re having baked turkey tonight!).

    My friends may not understand what I’m going through, but this wonderful online AR Warrior group and my sweet family definitely do. I am blessed!

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    • July 19, 2010 at 6:01 pm
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      Laura, that sounds like a wonderful man. & cooking children are a great blessing in life!! I’m so glad I taught them while I could.

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  • July 19, 2010 at 4:41 pm
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    Kelly, I loved this blog post. I echo what so many others have said: that your children had a wonderful teacher. I do understand that maternal guilt though, and have and still do wrestle with what impact a mother with several chronic illnesses requiring frequent, often sudden hospitalizations, had upon my sons. They are now 20, and 28. With the tremendous support of my husband, family, and church family, those boys grew up and turned out to be generally empathetic,supportive, nice, and often humorous young men. I have an embarrassment of riches.

    Kelly, thank you again for all you do, while facing your own set of struggles. You and the friends I have made, through you and RA Warrior, are the nicest gift RA has given me in quite a long time, and would be very high on my list. Please give Katie Beth a special hug from me, for the special blessing she is , in my life,also.

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  • July 19, 2010 at 4:45 pm
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    Hi Joanne, I, like Nikki ,am confused by your comment as well.I’m not sure what you are referring to, when you say that “it defies logic”? I look forward to your clarification when you have the time, and feel well enough to comment further. Thanks!

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  • July 19, 2010 at 5:13 pm
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    GREAT JOB KATIE! This just about made me cry…I think Katie will be glad she is making this decision, especially when she is older. I went to a local school and helped out my grandma (who had RA), and I’m glad I did. I looked in on her every once in a while, helped her get groceries etc. One day I found her on the floor – she had had a stroke and was just laying there on the bathroom floor. She didn’t really get better after that, but I’m sure glad that I was there to help her, especially that day. You will need help with some of the same things I would help my Grandma with, groceries, cooking, garbage, whatever….and it will give Katie a sense of fulfillment to help you do these things – to know you are living with a certain quality of life, thanks to her.

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    • July 19, 2010 at 6:04 pm
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      Michael, I’m so glad you were there for your grandmother. How ironic you got RA too. I hope none of my children inherit this. It skipped my mother’s generation, right?

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  • July 19, 2010 at 6:31 pm
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    Dear Kelly, i cried when i read your post, because as a mother we want our children to have the best opportunities that this world offers. I have always said ” Children are what they see”, and you have managed to show your children compassion, love, understanding, caring and other peoples needs are important.
    You have managed to mold your girls into fine young women, and, Roo will grow into a fine young man.
    To Katie Beth, God has given you a great mum, and your strength comes from God above,and im sure your decision, was an easy one to make, whether or not mum fully agrees.
    I also say that “Angles are sent from heaven and walk amongst where ever we go”
    Kelly, you are truly blessed !

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  • July 19, 2010 at 9:44 pm
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    beautiful post…I envy you your daughter, but in a good way. I have just one son who lives too far away to be of help at this time as well he has his own family to worry about. Without my husband though I admit I’d be screwed. I just sometimes wonder how much more he can take. Every morning he asks me, “what hurts today”…ciao

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  • July 20, 2010 at 10:51 am
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    Katie Beth— what an amazing example you are setting for your peers– to see how important empathy and caregiving are…you will be BLESSED abundantly for your tender heart and the love you have shown your mom and many others!!! (I know you don’t do it for these praises; but for the love for your mom) :heart:
    Some of the nicest things others (especially my hubby) have come in the form of “effort”–I have been so touched when he buys something for me or the house that he has checked out or researched to be “Arthritis Friendly”. Don’t get me wrong–not because he is forcing me to do housework 🙂 — but because he knows I have a stubborn nature and will do all I can to contribute to the housework. He will even find clasps on a necklace or bracelet to be AF. The best is my wedding rings are AF…if you don’t know about these–WELL WORTH IT!!! They have rings that pop open with a pin tip, so you don’t have to pull it over your knuckles, cut off a tight ring , wear a size 3 times larger than your finger base or just not wear one at all!!! People are amazed when I show them and it is real platinum, so it’s not a fake either. 🙂 Check with your jeweler, they all should know about them now.
    It’s the little things that make it all “worth” it!!!

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  • July 20, 2010 at 11:35 am
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    Kelly – I LOVE this post. It’s particularly bittersweet for me, since I was the daughter who really didn’t “get” my Mom’s RA until I myself started having symptoms. Many, many times I’ve sent up apologies to my Mom (she’s passed) for being somewhat insensitive to her suffering. How beautiful is your Katie Beth that she totally understands and wants to stay close – you must be so proud! 🙂

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    • July 20, 2010 at 8:55 pm
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      Thank you, Jackie! 🙂
      I have lots of those people in my life. Can you think of anything besides getting RA that would get through to them?

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      • July 21, 2010 at 9:37 am
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        I wish I knew of something that would work – it seems so difficult to truly understand for so many, docs included *grrr. I think the hardest thing for me to understand for my Mom was not the pain, but the fatigue. NOW I understand 🙁

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  • July 20, 2010 at 8:18 pm
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    Wow your daughter is a super star….My biggest supporters are also my daughters, definitely my husband (who has carried me through the house on bad days) the one that shocked me recently was my daughters friend. I volunteered to go on a field trip (I know crazy) it was to our local art museum which I love to go to, but somehow didn’t think through to the part where this would be at their pace this time not mine, we had a guided tour who thought we were in the indy 500 (I should have mentioned my daughter did not come on this field trip there were 2 scheduled for the same day and she was needed on the other) well this friend of my daughters would not leave my side even though I kept encouraging her to stay with the group and all along the way she kept asking me if I was ok. It was just surprising to have this come from a teenager who I have not talked to about my RA, but she just knew by watching me that it was a bad day. I am the same as you in the fact that I do not talk to my family (other than hubby and my girls) I have one sister who will never let me get a word in, and always has to one up me, I am also not a good patient and tend to keep things in and not tell others. Wow sorry I wan’t expecting to post such a long comment. Thank you so much for your blog I recommend it all the time.

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    • July 20, 2010 at 9:14 pm
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      Tara, thank you for the lovely comment and recommending the blog!!! Your daughter has a good friend 🙂 Won’t it be better when more people know what RA is & behavior like that is more common?

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      • July 20, 2010 at 10:42 pm
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        Kelly,
        That would be an almost perfect world where we could walk through with people understanding everyone with hardships in their lives, wow what a great idea. I still hold hope that the world will be that way some day.

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  • July 21, 2010 at 3:51 pm
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    This was so cool reading this today Kelly (I know I’m always a couple of days behind). You have raised a wonderful, compassionate daughter/best friend.

    I think the nicest thing for me has come from my wife. She has supported me racing motorcycles, but now that I have RA, she still has no problem with my riding anywhere, anytime. By the way, I’m getting a spot locator soon so she can track where I’m at on the computer.

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  • July 23, 2010 at 9:07 am
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    My best support is my husband. He lost his first wife to complications from RA and Lupus and he truly understands me. He believes me and knows when I need a break even before I do. I am blessed to have him.

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    • July 23, 2010 at 1:02 pm
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      Hi Heather,
      Wow, that is ironic isn’t it? I’m glad God has turned it into a blessing for you. O:-) And that he has been blessed with you, too.

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  • July 23, 2010 at 9:42 pm
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    My greatest supporters hands down have been you and the special people I’ve met through your blog and facebook page.
    My husband and daughters have also been nothing short of incredible. In reference to your beautiful daughter who is doing the right thing: The best people I know are those who did not have everything “perfect” in their lives. To say someone has had a perfect childhood to me, is to say this person has learned to be compassionate through some hardships and a loving parent or mentor to follow. Compassion is the greatest virtue, the golden rule to living. She will be blessed. I believe in our fast paced modern world of “It’s all about me”, we have forgotten what being a family really means. She is setting a great example.

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  • Pingback: Patients for a Moment: Nicest things edition « The Queen of Optimism

  • November 29, 2010 at 2:02 pm
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    I also wanted to let you know that I also have a very caring daughter who takes care of me. She has Type I Diabetes and has had for 9 years. I was always the one taking care of her and now she is helping me! She is now a 2nd year nursing student (who lives at home) and works in a hospital part time. I have only been diagnosed for about a year, but it is spreading throughout my body very quickly. My husband is getting better, but my son doesn’t get it. Support of the family is sooo important. It is also great to have the support of the RA Warriors!

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  • August 23, 2013 at 4:11 pm
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    Our daughter and son share the cooking. I always want to cook but it never works out. Sometimes they let me help but not very much or very often. Our son moved back home to help us and our daughter stays over a lot. I am very proud and grateful to them however I feel guilty sometimes but they will have none of that and no negative vibes are to be heard.

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    • August 23, 2013 at 4:17 pm
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      Dear Tempie, thank you for sharing such a wonderful example. This is the way it should be & they all know you’d do the same for them if it were reversed.

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  • August 23, 2013 at 5:44 pm
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    Our son moved back home to help us and our daughter stays over a lot. She does almost all of our laundry. Sometimes I can load and start the washer but she puts them in the dryer and folds and puts them away. Son does most of the vacuuming & all our yard work.
    Our daughter and son share the cooking. I always want to cook and think I can but it never works out. Sometimes they let me help but not very much or very often. I am very proud of and grateful to them however I feel guilty because I’ve always been the one to nurture but they will have none of that and no negative vibes are to be heard.
    My brother gave us a jar opener a few months ago and it helps so much although some of the jars are to heavy for me to put into the opener.
    My husband is a huge support and helps as much as possible we have been married 47 years this year and we are both retired now. I was diagnosed when I was 50 and I’m 66 now.I have found so much knowledge and encouragement in the RA Warriors blog & wish the it had been available to guide me in those early years.

    Reply

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