Hey all,
It seems that there are a lot of recently diagnosed folks here, so I want to give two bits of advice, and invite all you who have had RA for a while to chime in.
1. Learn to advocate for yourself. Ask questions and demand answers. Know that the answers might not always be what you want to hear, and that the doctors might not know the answers, but do put your questions out there, and keep doing it until you are satisfied.
2. Find SOME form of regular movement for your body. I do water aerobics, modified each class to what my body can deal with. Some people do yoga, some walk, some find a work-out that has been designed for them by a physical or occupational therapist works best. And you can ask your rheumatologist for a referral to a PT if they don't suggest it. My first rheumatologist is long gone, but there is one piece of advice I got from him that I will be ever grateful for: he told me to get in water and keep moving.
Since I am exercise-phobic, it took the threat of more severe disability to motivate me, but I have never regretted starting, and it is the ONLY form of exercise I have been able to sustain over time.
Find yours and do it.
Lecture over, but I hope other "oldies" in RA will offer their wisdom.
zzoi
folks listen to zzoi she has hit it right on the nose. We know it is hard to even think about exercise and keep moving when you have been recently diagnosed but it is important to do it. Even if you just walk around the block, do some light stretching anything to keep what movement of your body you have. The other is a good frame of mind, you need to try and keep a positive attitude. I know there are bad days believe you me I have had them but attitude is important. Remember this a place you can come and vent, tell us how good the day is, cry on our shoulders, whatever you need. We are here for each, so you will always have a friend here. Take care and think good thoughts. meme
I wish everyone luck and success in their daily journey through this difficult, and sometimes rather confusing, disease. This is a great place for support (which we all need), venting, getting tips, and finding some helpful answers.
Cris
Cris; On your enbrel contact the company and see if they can help you out they do have programs to help people who are having a hard time paying for the shots. Meme
zzoi - wow you are so right about advocating for yourself! I was shocked to see first-hand how the rheumy basically does the exam, tells you that you have a chronic, progressive disease, hands you a prescription and says "see you in 3 - 4 weeks." Not that I don't think he knows what he's doing, and he does try to answer my questions (and I have a million of them!) But I walked out of that office that day feeling like someone had just dropped a bomb on me and not really knowing what to do next! I tend to be very proactive about things and this is no exception, but I worry about people who aren't very assertive. I had to ask about physical therapy, and then he was happy to refer me, but I had to ask...
I really appreciate all the support and information I get on this website. Thanks to everyone who's willing to share!
I was diagnosed right after the birth of my daughter (second child) 11 years ago. I’ll admit I’ve had my ups and downs….sometimes WAY downs; but one thing is for sure keeping a positive attitude about it all makes everything so much better. That’s easier said than done I realize but feeling sorry for my self and having a “Woe is me” attitude only makes matters worse!!
You’ll get to a point where you’ll accept the fact that this is going to be a new way of life for you. You’ll accept that in the mornings a majority of the time you’ll just want to call in sick…and go back to bed and hurt and feel sorry for yourself all day long; but eventually you’ll learn to get your shower (morning must!!), eat a little something and take your meds. Get moving!!
One major piece of advice I have: Get ready everyday; whether you’re a stay at home Mom; or a corporate businesswoman. Fix your hair, put on your make up and get dressed!! I always feel better when I look better. I know that’s hard to do when a shower alone can absolutely wear you out sometimes. There’s been times when just brushing my teeth or trying to use a hair dryer about killed me….but keep trying. Your husband will thank you for this one too. He can ignore the fact that the dishes haven’t been done if he sees you’ve made an effort to look nice for both of you. (I know that sounds old fashion…but it’s true)
With time you’ll learn what works best for you. All of us are different and what works well for you today probable won’t work well for you two years from now. Be prepared for what’s ahead. Educate yourself like advised in the earlier post. Your Dr. sees many, many patience a day. It’s our jobs to come to our appointments prepared.
Good Luck to all of you. Boards like this are very helpful as well. I’m just now beginning to find the comfort in others who are going through similar situations. 11 years ago….even one year ago I didn’t have that. I wish I had a group like this all along!!
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