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😎 I just added these smilies last night, but they are so tiny. Don’t know whether I’ll keep them… 😎 (hey, look! they work with the keyboard characters! haha.)
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to people who continue to be ignorant about it and try and cure you with sunlight when their intentions are just their own discomfort with your chronic illness…
i’ve got a list ready & waiting lol. Wouldnt it be great if when people heard you’ve got RA that they know exactly what it is you’re going through & how tough life can sometimes be. I dont explain to ppl unless they need to know (for my benefit not theirs).
None of us are after sympthy — just a little bit of understanding..
Oh, there are several people. My rheumatologist to start. Then a few friends who are understanding but I don’t think they see the whole scope of it. Not trying to be mean, but my husband, so he’d have a better grip on what we’re dealing with here.
But mostly my rheumy. :p
i wish nobody this pain…
my brother-in-law….he says he has it, so I’d like to give mine to him for a while so he can see what it is really like. (And realize that he doesn’t have anything wrong with him.)
It can be difficult because people feel that you have to look bad on the outside to actually be going through anything on the inside and therefore you aren’t taken seriously, but I wouldn’t want anyone, even those that don’t understand, to have to go through this. For some reason this is part of my life and it isn’t for me to want to loan or wish my RA on anyone. It is for me to make the very best of the life I have been given and try, through my experiences, to help and encourage others that you can make it even in the hard times and not give up. There are people out there who will always be ignorant about RA and will never change but our attitude through this is up to us.
the reason I would wish it on my BIL is that he has faked his way to disability and it makes me angry that there are people out there who are really deserving of help. I have RA and I work. I couldn’t get disability if I tried (not that I want it). I just really feel that people who abuse the system should get some return karma. It might make them realise how good they have it
maybe one of my friends, but only for awhile. the degeneration of my physical being is confusing to her. She keeps thinking I’m mad at her cause I don’t go on errands with her anymore.
I would like to loan my RA to a less than sympathetic rheumatologist that I had 9 years ago. I would love for him to walk a mile in any of his patient’s shoes. I would love for a dr to tell him to not over-react just because your feet have swollen 3 shoe sizes, that he cannot walk by himself, that he cannot use his right hand, or even put a coffee cup to his mouth. And, then, the dr could tell him to come back in 6 months if he didn’t feel better. Oh, and by the way, this rheumy no longer practices, he went to work for a drug company!
And, lovely Maria, I had to vent, but I agree with you. When I was diagnosed, I instantly knew that my lot in life could always be worse. I also decided that I would make the best of what came my way and find the best drs and the best treatment for me. When I had this realization, I started taking better care of myself and I was less judgemental about what others were going through….I was in total denial for a long time about my RA and what it was doing to me and to my family
Sometimes I feel as though doctors, after a while of practicing, seem to lose the compassion that they start off with. For me I would like the Disability Determination people to see what it feels like. I am not sure of other states, but the state of RI automatically turns you down the first you apply for SSDI. I feel it should not be this complicated to get on SSDI. If your doctor says you can not work, then why do we have to jump through these hoops? I have the RA mostly in my hands, wrists, and feet. Also have Fibromyalgia, and OA of the knees……….For those of us that have worked hard all of our lives, and build a little nest egg only to get financially ruined while waiting to hear from SSDI is just down right WRONG
My husband
Fortunately my rheumy is really great and he seems to understand. Orthopedic surgeons perhaps need an education…they’re mainly interested in the mechanics of joints and really don’t understand the effects of RA (based on experience with two orthos). Some friends/colleagues need an education…just received another one of those comments yesterday…”yea, I have arthritis in my knees also.” But I’d really wish RA on no one…it’s too nasty. I guess I really wish that decision makers, the ACR, drug companies, insurance companies, researchers, policy makers, etc. would have a better picture of what RA is really like.
I would also loan it to my orthopedic surgeon who put me through 4 surgeries and I’m still at square one!
I would love to loan my RA to my husband for 6 weeks only. Don’t want him to have the joint destruction I have, but a reality check. He is supportive in many ways. What he doesn’t get is how we can plan something for a week from now and when the time comes I have to back out. He says I don’t think you wanted to go all along. He then gets pouty for the day!!!!!!!!
If I would loan my RA, besides my rheumatologist, I would loan it to my brother. I love my brother and he loves and supports me but there are a lot of times that he doesn’t get it. He doesn’t get the pain that I’m going through.
Oh well, but in reality, I really want no one to have and experience RA. :-)) O:-)
yes, for all RA to go away is an even better fantasy! :rainbow:
I would not want anyone to have this RA, but if I could loan it out I would give it t0o my son, he just does not understand. I’m 61, he does not get it that sometimes I may need his help, that I may just need to talk about things etc.
I have had 3 Rheumy’s, I know one understood, one did not give a hoot and the third is very nice and gentle but I’m not sure he quiet gets it.The wonderful understanding Rheumy passed away. I cryed like I’d lost a family membere but he was a dear friend.
Don’t let RA beat you everyone!
My Rheumatologist – without question
This is hard…. I would love to give RA to my boss so she could just fricken understand and stop fricken hounding me. Or I could give it to my hubby. He says he gets it but yet he complains when I ask for help. Tough choice.
Or, even better, I could give it to the dr. who told me he doesn’t believe in treating chronic pain with narcotics. Yeah, he NEEDS to have RA for a day.
Hi Samantha,
I’ve heard this from too many people. Wouldn’t it be great if RA didn’t hurt. Or if all the rheum doctors KNEW how much it hurts. It shocks me how many patients can’t get appropriate treatment for pain. Click here to read an answer I made to another person with a similar comment today.
I would definitely loan it to my ex, but then I would have to take it back because he would not be able to handle it. But, I would like for him to know what I have had to deal with since he always assumed I was just lazy.
As for doctors who don’t treat the pain of RA(or any other pain for that matter). I really have to question their motives for becoming doctors in the first place.
You mean Dr. Borenstein, the president of the College of Rheumatology? The same man who wants to remove the methotrexate and plaquenil regiment my rheumy of the past 4 years has me taking because, in his words, “The emperor has new clothes.” He seriously said he wants to see my symptoms with his own eyes before he can define a treatment regiment for me. Nevermind that the tendons in my forearms and calves have widdled to nothing, my eyes hurt, my fingers and toes and knees swell (ocaasionally), or that I just had ACDF surgery because the RA is eating up my cervical spine. Nevermind the MRI that shows incredible swelling at the C1-C2 level. I’m imagining all that because my blood tests aren’t giving him a strong enough indication that I have a RA. Without methotrexate and plaquenil, my wrists, elbows, shoulders, SI joints, hips, knees and ankles are swollen and I’m in the most incredible pain of my entire life. Yeah, I’d like Dr. Borenstein to feel that for a week or two, just to wear this emperor’s clothes.
hi Katherine – Dr B is a past pres of ACR – http://www.rheumatology.org/about/newsroom/2010/leadership/2010_borenstein.asp
Current:
http://www.the-rheumatologist.org/details/article/3989431/Meet_the_2013_ACR_President_Audrey_B__Uknis_MD.html
I actually did not know whether he is still practicing. I’m sorry he’s not giving you the care you need. Are you able to find another doctor?
Yes, I am transitioning to a new care team. Dr. Borenstein was highly recommended but I am still overcoming the obstacle of blind faith in my doctors. Your foundation and website is instrumental in helping me better understand RD and advocate for myself. Thank you!
I’m glad you’re doing what you need to take care of yourself. It’s not easy, I know. We are approaching it from both sides – patients can advocate for themselves, but we also need doctors to be better educated about the disease.
Reading stories about Prednisone experiments caused me to want to share mine even though it was years ago. Prednisone saved my life as far as I am concerned. RA hit me so suddenly and completely from my jaws to my feet. Not one part of me was untouched. It seemed each area had different types of pain. It was totally debilitating and excruciating. I couldn’t open my mouth or even run my tongue over my teeth. I didn’t know what to do. That is when my Rheumatologist said it was time to use the BIG GUNS…that meant massive doses of Prednisone. I never had heard of Prednisone at that time but I didn’t care what he gave me…I didn’t care if I died really. Within 15 minutes of taking a handful of these tiny pills all my pain was gone!!! I felt so good and I could open my mouth and EAT. I had lost a lot of weight but now felt great. This is why Prednisone saved me and I gave been on it for 40 years…however now only 3 mg. a day. I don’t gain weight on it. It has been a blessing.