What advice would you give to someone who has just been diagnosed with RA?
Educate yourself about RA. Work with your doctor to see what is best for you. No one persons treatment and results will be the same so if your meds are not working then you need to let your doctor know. If you have a doctor that doesn’t want to help or change your meds or work with you then find another doctor asap. I made this mistake by sticking with the same rheumatologist even when my treatment was not working at all and was in the worst pain of my life. I was simply shrugged off as overreacting but as soon as I switched RA drs…I got relief because he changed my meds and really listed to me when I told him what hurt and the pain level was simply out of control. Also, I would advise a good support group either in your area or online. A good support system is essential with RA.
Do you use any mobility aids?
Not at the moment. I do own a quad cane, a raised toilet seat, braces/splints for wrists, hands and knees and alot of different heat raps. One heat rap for the neck, small ones, medium sized ones and electric blanket. I also have to wear a mouth guard at night when I sleep because the RA also effects my jaws and without it my jaws KILL me!
How has living with RA helped to improve your life?
I have always considered myself as a nice quiet person that is very compassionate but RA has taken my compassion to another level. It has taught me to not judge a book by its cover that you don’t have to “LOOK SICK” to be sick and in pain. It has definatly made me a much stronger person. My husband tells me I am the strongest person he has ever met. (Although I don’t feel that way most of the time) I just know at the end of the day I can’t give up…I just can’t! It is not an option. My children and husband need me too much to give up and if I give up my disease wins and I lose.
Do you have any visible signs of RA?
I have a ton of rheumatoid nodules on both elbows and at times it makes me self conscious. My big toe on each foot is turned in. Visible swollen fingers. Very restricted jaws (can’t open mouth very much at all and can make it hard and painful to eat.)
Can you please describe some of your favorite coping strategies for living with RA?
I am very thankful I have a good support system and my husband is my rock and without him I don’t know what I would do. If I am hurting alot then rest is my friend. I use heat wraps and packs alot and electric blankets. Heat feels so good on aching joints and muscles. Thankfully my husband steps in and takes care of household things and the running so I don’t have to push myself to do it when I am hurting. Honestly if I am hurting alot a good cry always helps me. Keeping it bottled up only makes it worse for me I do try to be strong and not complain it does help when it gets to be all too much to talk about it to someone.
Can you please describe your current medical (traditional and alternative) treatments?
I have been on Arava, Methotrexate (pill form and shot), Prednisone, Enbrel, Immuran and Percocets and a TON of Ibuprofen. I am in the process of getting started back with a RA doctor and as of right now I am not on anything but Ibuprofen and percocets till I go back next week to the RA doctor.
Is there anything else about yourself that you would like to share?
I have a passion for raising awareness for Rheumatoid Arthritis. It is so missunderstood. Even my family doesn’t really have a clue what it is like and to the degree of pain that one suffers with RA. I have an Ebay store were I sell edible cake toppers/images (cake not included, cake topper only) which is named Cakes 4 Cause to try and raise awareness for Rheumatoid Arthritis. Each order comes with a website link with tips and tricks for your applying your edible cake topper along with alot of RA information and my story and such. One day I really want to write a book on my journey with RA.