- Get a really good rheumatology doctor. Find a doctor who will spend time with you and talk to you. If you can't find one, ask someone who has RA for a referral. If you don't know anyone, ask your primary physician.
- Find reliable information about RA and don't always rely on the internet. Doing a Google search for RA will make your head spin! There is SO much information out there about RA and autoimmune diseases. Some of it is good and some of it is BAD. Ask your doctor, other people with RA, etc. for places to get reliable information.
- Find out everything you can about your medications. I met someone recently who was put on Methotrexate and was never told they would be sun sensitive. I also met someone who was put on 20 mg of Prednisone and no one told her that she would be hungry all the time and gain weight if she was not careful of what she ate. I am just shocked. I guess I should not be since I have been taking a thyroid medication for months and no one told me I should not be taking my Crohn's medication and Zyrtec at the same time! No one told me I needed to wait 30 minutes before taking each of them.
- Find out about all the mediation assistance programs for the medications you are taking. I never knew I could have been on an Enbrel co-pay assistance program long before I was on it.
- You are your own medical advocate. You know you better than any doctor, nurse or technician. Don't let any medical professional bully you into anything that you aren't comfortable with. Medical professionals are only humans who have done more schooling, they are not gods or magicians. Don't let them talk down to you, don't let them run tests you are not comfortable with, and don't let them treat you in a disrespectful manner. You are the customer and should be treated with respect. If a doctor doesn't have time for you, find another one. You have heard my story but to recap: I had a doctor years ago who told me (I was in my early 30's) that I was "getting older now" so I should just get used to feeling this way. I switched doctors and it turned out I was B12 deficient and had RA. Imagine if I had listened to him? I knew something was wrong so I switched doctors.
- When you are ready, reach out. You can reach out for support groups, exercise groups, chat groups, blogs, advocacy groups, etc. Everybody has a different way to get involved or not get involved. I also found for myself that at different times or stages, I was interested in different types of involvement. In the beginning I was more interested with finding out everything I could about RA. I tried a walk-a-thon. Then my next stage was not really getting involved at all because I was so occupied in getting myself back on track and healthy. Now I am in another stage because I am more stable (or just damned used to being sick...) and I am involved in blogging, advocacy work and I am trying to start using the Arthritis Foundation walking program.
- Help your family by giving them information about RA. If you educate them, then you will know the information they are being given.
- You will probably grieve for the life you thought you were going to have. I am in a place where I celebrate the life I have now and I feel I am blessed because I no longer live a life that is safe. If I had not gotten ill, I would have never quit my job and started my own business. I will never be rich but I am happier and healthier. I live life on my terms now. Getting sick freed me from worrying about the small stuff like I used to. My stress level is so much lower than it used to be.
- There will be really shitty days but there will be really good days too. The hope is that the good days outweigh the crappy days. I am happy with a 70/30 split! I don't think I am there yet. I think I am probably a 60/40 split right now between the RA and Crohn's.
By the way, I had a fabulous dinner with a my friend and her new boyfriend. I love eating good food. I just wish my Crohn's would not kick in when I occasionally eat rich food. Kinda makes the end of the evening not that great because I have to hurry home. I had a great time with my friends!
You have a great list going here :-) and you are right on target in my humble opinion on advice for a newly diagnosed ra patient. I think maybe the only other thing I would add is to get familiar with their health insurance policy and get to know it well: what it covers, copays, deductibles etc. And also find out if their employer is a large or small employer, under the rules and regulations of the FMLA, do they have short and long term disability through their employer and things like that. I wouldn't at this particular economic downturn go to their HR dpt. to find out but figure out another way to find out (check their employee handbook) so they have needed information IN case they need it. And surround themselves with people that are compassionate and understanding with their new diagnoses.
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