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Old 05-30-2013, 02:21 PM
 
8,920 posts, read 13,377,068 times
Reputation: 13727

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I'm so very glad its working!

She might feel tired at first, due to the stress of the unknown. It should get better over time. With RA, whatever works! I was first dx at age 21, they didn't have anything to treat it with. I was taking 16 asprin/day....4 at a time....that was what the doctor recommended. It was a big deal when Motrin came out, it was the first non-steroidal-anti-inflammatory, and by RX only. BTW, I'm 58, I'm not "ancient". Treatment for RA has made tremendous progress in a relatively short time.

Also, are you a member of the Arthritis Foundation? If not, consider joining, they have excellent resources, including their magazine, which has a ton of useful information. God Bless!
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Old 05-31-2013, 11:11 AM
 
Location: NoVa
18,435 posts, read 26,644,764 times
Reputation: 19517
Quote:
Originally Posted by MaryleeII View Post
I'm so very glad its working!

She might feel tired at first, due to the stress of the unknown. It should get better over time. With RA, whatever works! I was first dx at age 21, they didn't have anything to treat it with. I was taking 16 asprin/day....4 at a time....that was what the doctor recommended. It was a big deal when Motrin came out, it was the first non-steroidal-anti-inflammatory, and by RX only. BTW, I'm 58, I'm not "ancient". Treatment for RA has made tremendous progress in a relatively short time.

Also, are you a member of the Arthritis Foundation? If not, consider joining, they have excellent resources, including their magazine, which has a ton of useful information. God Bless!
It really has made a lot of progress. What we need now is public awareness. This is not your grandmothers arthritis and you can't get a touch of it every once in a while.....

Maybe I should become a member of the Arthritis Foundation..... thanks for mentioning it in the OPs post!
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Old 05-31-2013, 11:12 AM
 
Location: NoVa
18,435 posts, read 26,644,764 times
Reputation: 19517
Quote:
Originally Posted by nmnita View Post
The good news is she has some mobility in her hands. That is wonderful. the bad news, she says she is very tired. This is what we are all living with right now. Medicine has come so far and we are so lucky, but for every positive med or treatment there seems to be a down side. We have to make our decisions on treatments based on good information from our doctors and weight the pros and cons.
This sure is the truth. I take so many meds that can have so many side effects and that have been known to cause cancer, etc, etc.

You get to a point where you need a quality of life and sometimes, the risks are worth it.
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Old 05-31-2013, 11:13 AM
 
Location: Lone Star State to Peach State
3,397 posts, read 2,790,488 times
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Thx. I will join the foundation.
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Old 05-31-2013, 02:53 PM
 
8,920 posts, read 13,377,068 times
Reputation: 13727
Quote:
Originally Posted by Pikantari View Post
It really has made a lot of progress. What we need now is public awareness. This is not your grandmothers arthritis and you can't get a touch of it every once in a while.....

Maybe I should become a member of the Arthritis Foundation..... thanks for mentioning it in the OPs post!

I really think they should change the name of the condition. RA = rheumatoiod arthritis has nothing to do with Grandma's Arthritis. I was first dx with RA at age 21. If I had a dollar for every time I was told oh, you're too young to have arthritis---I'd be a millionaire! I've even had healthcare "professionals" say that! I had a total hip replacement at age 26. I had to go round and round to find a doctor willing to do a THR on "someone so young" although my hip joint was totally destroyed. I told one doctor, in utter frustration "I'm getting old as fast as I can!"

I usually tell people I have a connective tissue disorder. That shuts them up! Otherwise, I get a ton of worthless, ridiculous advice that cured someone's Grandma. I used to say I have an autoimmune disorder, but found people thought I had AIDS Well, at least I'm now older, so people don't challenge me that I'm "too young". Next thing they will be telling me I'm too old! whatever...........


If you have a chronic disease, the most important thing is to educate yourself. YOU are your own advocate, your own healthcare manager. You will run into the most ridiculous attitudes and advice, oftentimes from so-called "professionals", such as doctor office staff, nurses, etc. Fortunately, we are now in the Information Age. Obtaining information is easier than ever before, but beware of misinformation as well. Take care of yourself!
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Old 05-31-2013, 05:26 PM
 
Location: NoVa
18,435 posts, read 26,644,764 times
Reputation: 19517
Quote:
Originally Posted by MaryleeII View Post
I really think they should change the name of the condition. RA = rheumatoiod arthritis has nothing to do with Grandma's Arthritis. I was first dx with RA at age 21. If I had a dollar for every time I was told oh, you're too young to have arthritis---I'd be a millionaire! I've even had healthcare "professionals" say that! I had a total hip replacement at age 26. I had to go round and round to find a doctor willing to do a THR on "someone so young" although my hip joint was totally destroyed. I told one doctor, in utter frustration "I'm getting old as fast as I can!"

I usually tell people I have a connective tissue disorder. That shuts them up! Otherwise, I get a ton of worthless, ridiculous advice that cured someone's Grandma. I used to say I have an autoimmune disorder, but found people thought I had AIDS Well, at least I'm now older, so people don't challenge me that I'm "too young". Next thing they will be telling me I'm too old! whatever...........


If you have a chronic disease, the most important thing is to educate yourself. YOU are your own advocate, your own healthcare manager. You will run into the most ridiculous attitudes and advice, oftentimes from so-called "professionals", such as doctor office staff, nurses, etc. Fortunately, we are now in the Information Age. Obtaining information is easier than ever before, but beware of misinformation as well. Take care of yourself!
We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Autoimmune Disease (RAD) | Don't miss this! | Rheumatoid Arthritis Warrior

I def am my own advocate. I had to go through many doctors to find one to treat me. I was dx with RA and FM several years ago and I was seronegative. In their minds, it meant I only had FM and no one would treat me for the RA. I went for around 4 years without being treated for my RA. I finally went back to the dr who dx me even though she is a three hour drive. I had some specialty lab work done, I don't know if you have heard of it. Vectra DA. It takes many different lab tests and comes up with the level of your disease activity.

The dr who ordered the tests did it I think to prove to me I did not have it. He kept looking at my labs and telling me there was no reason for the pain I was explaining. I have been through so many drs saying the same exact thing. He looked at my test and told me there was no disease activity and I just looked at him and shook my head and cried. He asked if I had seen a psychiatrist.

That made me so upset. I asked for a copy of the report when I left and I went out and sat in my Jeep and I looked at it. Not my date of birth. Not my name. It was a practice type sheet to show them how to read the results of the test.

I went back in and told them it was not my result. I said maybe if you were looking at my test it may better tell you something.

I showed the dr and I was so so mad. I had a level of high disease activity and he was trying to send me away like a crazy person. He called me a couple of nights later and apologized and said we need to take invasive action.

No ****, I told him. I told him I would not step another foot in that office and I went back to my dr who dx me. She looked at all of my records and just sat there astonished and shaking her head, how could they not see this all along she said.

I just broke down at that point because I knew I was finally going to get the care I needed......
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