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Hi Kelly
I love your ‘not cute tips’ and would like to add one that I tend not to follow (in fact I rarely if ever follow) 😀
Thou shalt not minimise thy pain in order to make other non RAer’s feel better
What a great one! THANKS!
Kath, I like that one too! 😀
Kelly, these are right on…I don’t really have any others that I can think of at this time…but if I do, I’ll be sure to add! Thanks for the post – and all you do!!! 🙂
also love that one Kathy, and Kelly thank you for all that you do with what you have to live with regarding our RA. you are a true blessing from God for others suffering from RA
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These are awesome!
My Non RA husband, who is very supportive of me, loved your tips. He wants to add “Thou shalt not hide the truth of this disease from the public.” and “Thou shalt not believe the fantasy cures portrayed by drug company advertisements.”
and how about “Thou shalt not feel guilty about seeking therapy to deal with your feelings of anger and grief over the loss of life as you once knew it”
Thanks again for the great job you do!
Very good points Joy! And how about, “not believe every cure out there!”
Learn to remember how to replace joy in your life, your way.
Thou shalt release the guilt and the pressure you feel of not being the person you were before your disease.
Excellent commandments, especially with Kath’s thrown in there!
Hi, I’ve got one for you. This one stems from before I was diagnosed.
Thou shalt not let others tell you to push through the pain.
I’m in the military so I’ve had that happen to me way too often. “Just push through the pain, it can’t be that bad.”
I am printing these out to post at my house! : )Number 2 was a hard one to get used to! : ) How do you not feel guilty when your family and friends don’t understand why you made plans 2 weeks ago for a fun filled day, but wake up to your ankles being in a flare! : ( That is very disappointing for them! Sigh…thanks Kelly for the encouragement that it is okay. : )
I love these and because I do not know what I have (most likely either RA or Lupus ) I would like to add:
Thou shalt wait for much longer then thou wants to to find out what is going on in your body, (and just because you do not know what it is does not mean that you are not sick.)
Admit when you need help, and accept it gracefully.
Thou shalt not feel guilty when the drugs to not work as advertised (it’s not your fault you are having odd side effects!).
I have another, one I’m currently pushing myself to believe:
Thou shalt get help with mundane, heavy, enervating housework so you can have people in without having to explain how it all exausts you and how the stress over trying to get it done just sends you to bed.
I’m new here and love what I’m reading. Because I was almost instantly diagnosed and sent to a rheumatologist thirteen years ago, I may not know what some of you know….but I do know that if I didn’t take a painkiller, I wouldn’t be able to even get dressed!!
Thanks to all of you for being there….I’ll be looking in from time to time.
Judy
Welcome Judy. 🙂 Good point
Judy, Unfortunately I rely daily upon painkillers in order to function as none of the typical RA meds have proven effective for me. I have told my family that any plans that I make with them are tentative b/c I never can predict if it will be a day where I can do basic things such as get out of bed and shower or not. And it is very difficult to have people come to my home b/c I wear out trying to do basic household work so that I won’t get embarrassed that my house isn’t perfect, as it once was. *sigh*
Thou shalt be kind to thyself in times of pain and fatigue, and ask for help when it is needed.
Thou shalt be willing to say ‘no’ when demands of others exceed the number of spoons you have available.
So true…
spoons? What does that mean?
The spoons reference is from a story a woman with lupus wrote, sorry lost the link. She decribed that each day she woke up with a different number of ‘spoons’. It takes one spoon to get out of bed, one spoon to take a shower, a spoon to get dressed, etc. And when she was out of spoons for the day she was done, that’s it. The point was she always had a different number of spoons in the morning, and you can’t save them up and you can’t borrow from tomorrow so life is unpredictable. It was a great story and really helped my husband and daughter understand my days better.
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Great advice !! So true.
Barbara, your “Admit when you need help, and accept it gracefully” is something I should working on a lot… It’s hard to accept the idea you need help.
Thanks.
Right on the money kelly -and I LOVE number 10! Thanks.
Number 2 really rings true. And Betty’s point about saying “no” is also very good. I would like to add “thou shalt be honest with everyone – including yourself – when having a bad day.” Great list Kelly!
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Kelly,
Great post. My addition would be: Thou shalt love yourself.
Blessings,
Tonja
My favorite is commandment #6 Thou shalt read thy medical records. Funny how you can discover things that the doctor failed to mention, or an error in past medical history.
#7 Thou shalt find a doctor who listens to you. I think is the most important of all- we need to be a team and if you can’t communicate your needs, or feel that your doctor is not listening find one that will! With that said, I also think it is just as important to really hear what our physicians are telling us, we may not like what they have to say- but that does not mean they are not listening, it may be that we really don’t want to hear the truth.
Great 10 plus commandments/comments! I would add:
Thou shalt research your chronic illness.
Doing research on the internet leads me to sites such as these! I am a more informed patient, and I try to keep current on treatments and therapies: traditional; alternative; and complimentary. I am lucky to have a doctor who listens to me, and she appreciates my doing research.
I would love to post the original 10 commandments on my blog, as well as the comments. Of course, I would contact folks first for their permission!
Phylor, you have my permission to quote me, as long as my name and link are also used. I can’t speak for the comments though. Maybe just introduce it & put the link to the comments page. Good to hear about your good doctor.
I am constantly breaking commandment #2…. I blame myself for being sick on an almost daily basis. It’s hard when you’ve made a lot of dumb choices in your life, not to blame yourself. However, if I hadn’t made those bad choices, I would be scratching my head saying, “why me?”
“Thou shalt ask for accommodations”. This one is harder than it sounds.
It’s all harder than it sounds. 🙂 Even if your own choices affected your path, the only way you can walk is forward, so it’s better forgiven. My opinion.
Fantastic!! Here are a few that I find helpful” (i’m gonna skip the ‘thou shalt’ format..”
1. Keep a current list of the meds you take and who your Dr.s are. Keep it with you when you go out, or somewhere handy in the house..just in case. It’s come in handy for me a few times in emergency situations.
2. Have a ‘flare up’ plan of action–people you can call, routines you can follow for when you pain gets bad or your mobility decreases. This helps me and helps me help OTHERS who are helping me.
3. Focus on what you CAN do, and go in that direction…do what you CAN, try new things you CAN try. Never stop learning/experiencing.
Thanks Beth. Good ideas. This is becoming a helpful little thread here! 🙂
That is a great reminder to remember to carry a list of your meds and names of your doctors. I have another AI issue along with the RA that causes me to be hospitalized from time to time and it usually is an emergency when it occurs. I am usually hurting so badly that I can’t remember anything and it has saved me and my husband lots of stress by being prepared. I struggle with the guilt that goes along with this disease. I think I am harder on myself because I hate letting others down. It is the hardest commandment for me to follow for sure. Thank you Kelly for all that you do.
A wonderful post. After 54 years with RA, I still didn’t know much about it till your great blog came to fruition, Kelly. Thank you so much. All those years, through all those flares and pain, I still was an obsessive clean and neat freak (and paid a high price for over-stressing my hands, as well as feet and knees). Now finally here I sit at 3 p.m. in my jammies, perfectly comfortable that the bed isn’t made and the sink has dirty dishes in it. Why? Because I can! I could never have done that when I didn’t know other RA people, and heard their stories. So now I look back and realize I was the only one to whom it mattered. I’ve let go of guilt that I can’t do it all. If my aide doesn’t do it, it doesn’t get done and that’s OKAY! HOORAY!
hooray! 🙂
WOW Lyn. I am now at 3o years of RA. Was diagnosed at 23. I can’t imagin 52 years.
Love them all and as others have already said – not cute but very real. There is nothing cute about RA. Here’s mine:
Thou shalt become an RA Warrior and read Kelly’s and other Warriors’ inspiring words over and over until they sink into your soul and you find your truth and from there discover your courage and joy.
Sorry, just had to add that – for me it is a huge part of #1 and #3, in fact all of the commandments. Thanks, jmho.
I was diagnosed when I was 11. I worked until my late 30’s. Since then I had 13 surgerys in 15 years. Stainless steel in my ears and wrists, plastic knuckles, titanium screws in my toes. These parts were said to last approximately 10 years. Some have lasted longer and some are due to be replaced. It had been 10 years since my last surgery up until the fall of 2010 and now I am starting over on some of the artificial parts that are already worn out. I am now 58 and raising my autistic grandson. I have postponed surgery twice because I don’t know how I will care for him while I am laid up. Right now they want to do a total hip replacement. Sometimes I don’t know what I would do if I didn’t have strong pain medicine. God Bless the doctors that know and see the pain in my face. I wish all of you RA suffer’s the best and never give up your dignity. Do not put off the joint replacement in your hands because the sooner it is done the better the results. That was told to me by one of the most highly respected Dr’s at the Indiana Hand Center.
What a statement Lois: “God Bless the doctors that know and see the pain in my face.” God bless you and your grandson. I hope you can get your hip fixed soon.
Thou shalt accept offers of help even if you’ve always been totally independent before. Thou shalt even ask for help from time to time.
Thou shalt allow thyself a good cry-sometimes it really helps!
Thanks, that’s true.
Thou shall not let other people guilt you into denying what you are feeling. Pain, depression, anger or any other consequence from RA.
Thanks once again Kelly and all the RA Warriors out there.
I love Kelly’s 10 commandments and the other suggestions, good advice! I’ve learned so much from Kelly’s site and others. From a fibromyalgia diagnosis 12 years ago to RA this year, it’s been a long painful walk. Commandments 6 and 7 are the ones that made it a longer one…maybe if I’d seen my records & lab test results, and my doctor really paid attention to what I told her, I would have known several years ago. Knowledge is power.
Thou Shall NOT explain to you how my RA is NOT the same as your ‘old-age’arthritis you’ve had for years! Thx
Oh that is so funny! I had a Rhuemy tell me once that this all comes with getting older. I was only 37!!!! Buahahaha!!!! I was like uh huh…ok. And I see 90 year olds walking around better than I do! Go figure.
Thou shalt not self-medicate without full disclosure to treating physician.
Thou shalt be kind to yourself and not think about what you have lost.
To Cynde Damstra who wrote comment #5. Thanks. I really needed to hear that today.
#’s 1,4 & 9 give me the most difficulty. In my mind, I’m still Superman… I have kids. How do I accept limitations, or ask for accommodations? I’m teaching them that I am no victim. Life what it is and to a great degree what we make it… I still have a hard time reconciling it all… Be well…
Very good blog post Kelly! I especially like the parts about doctors. Its hard tho’ when there are only a few in the cities around me. And medical records are especially important. I was in denial. I wish I empowered myself earlier in my illness by keepign up with the records. I just was trying to keep up with my dealing with RA and my pain. Why is this disease so hard to educate about?
Thou shalt hire a cleaning lady and let your husband mow the lawn and lift heavy things. I spent way too much time trying to prove I could still do these things even though the AS in my back and SI are torture. There is no point! My cleaning ladies were here today, my toilets are clean, and I feel wonderful.
Thoug shalt not suffer a bone-headed Doctor and accept that the Doctor is always right. The day that they can crawl up into my body and feel my pain, I will wholesale accept their take on my illness. Sooo–
Thou shalt trust your body to tell you when it has had enough. Pain is a symptom of reason- it tells you the truth.
Gentle hugs to all- don’t overdo on the holiday stuff.
These are great — I still need to find a good doctor….one of those doctors who understands and listens….Those are dream doctors. I have met a few for my children — just not one for me yet!
Thou shalt not reply, “Everywhere, duh!” when the Dr. asks, “Where does it hurt?”
These are right on target. As an 18 yr. veteran of the battle with Rheumatoid Disease, I can attest that these commandments will help one make through the good and not so lovely days.
thanks Nancy. There’s so much that could be added but sometimes we just need to remember that we need to pay attention to our needs – or we won’t be able to do anything else.
Thou shalt take any and all help when it is offered.
I often decline help to “not be a burden” on others. I’m slowly learning that when my husband or friends offer help, it’s usually because it is so painfully obvious that I need it.
great point!
Thou shalt be mindful to count each blessing every day.
Thou shalt be organized and not procrastinate if at all possible — you never know when a flare might knock you on your butt!!
How about “Thy shalt not doubt yourself” This is my “sin”. When I’m having a good day, I aske myself…do I really have RA, there are so many people with more problems, more pain, more everything than me. I’m also asking myself still after a couple of years, how can this be happening to me…and the best one is me in my Rheumy’s office asking him if I’m crazy. I thank him everyday for saying NO, you are not crazy. I’m new here, thank you for this website and for slowly making my doubts disappear
Sounds like a good attitude from your doc Maura. Good luck to you.
“Thy shalt not doubt yourself” This is my “sin”.
Wow Maura! You must be my doppelganger! I have this conversation with myself constantly. Thank you.
Ok here’s the one I am currently working on Thou shalt honor the good things you do for your family and not beat yourself up for what you can’t do.
I home school my daughter who has ADHD, learning disabilities but is also gifted. When my son with severe autism was 5 I did play therapy with him where I had to play with him for 2 hours a day. This therapy made a huge difference in his behavior and our ability to interact with him. Yet at the same time I feel guilty for things we don’t do, the museums we don’t go to as a family because I can’t do that much walking. This is something I’m having a hard time with right now. I am having sinus surgery tomorrow and yesterday my husbands sister died. So because of me he can only go to the funeral(its in another state) and then has to immediately return home.
Thou shalt not feel humiliated when grimacing while trying to get up from a chair in public.
Glad I read this post, I requested my doctor’s notes since she does not “talk” to me. funny how much she typed wrong or completely left out. Luckily, I am going to another doctor, I wrote out a page and attached it to the records indicating what was wrong with her notes as well as what was left off.
I’m amazed at just how often that happens with all doctors. Some of them now want to charge you for getting your own records. And they don’t have them that same day. Just amazing.
The one thing I wish I knew was “thou shalt use prednisone as a short term solution only!”
After more than 20 years on it I doubt I CAN get off it and it has caused many long term side effects like steroid induced cataracts at 50, terribly thinning skin that tears easily and bleeds and bruises!
I like those! I would also like to add:
Be prepared to be abandoned by people who have never experienced chronic pain.
Always take someone with you to your appointments, there is just too much info sometimes.
Keep a journal of everything going on and any changes. One day you might look back and say….”the turning point was when I started this med or that!” Slow changes are best so you will know what did it. We all get desperate for relief sometimes.
Most importantly…DONT GIVE UP!!!!
These are just great. Maura, you remind me of me. Lol. Thought shalt not feel like a druggie because you have to have pain pills.