Getting Started on myRAteam

MHT_RA_SignUp

Part 1

Get the most out of myRAteam, by sharing a little bit about yourself. This two-part series is to help you get to know great people on myRAteam. When making valuable connections and friendships, it’s always valuable to start with oneself.

Begin With You

Getting started:

Consider the value of customizing your own profile on myRAteam. Whenever we hear something kind or insightful from someone, we have a natural tendency to want to know the person who said it. At a glance, a photo of yourself adds more personality, and builds trust in the community since your profile photo can be a large part of your identity on the site.

Your story:

Add your story to your profile. Have you ever read someone else’s account of what happened to them, and said “that’s happened to me before?” And by reading the story, you realized that it made you feel better, not because it solved your problem, but because you found someone you could relate to. Add or update your story.

story

Team:

To the extent that you have a team (Rheumatologists, Physical Therapists, Physiatrists, etc.) add them. Your team is a great way of helping others near you learn more about resources you find valuable, and possibly have in common with each other. Add to your team.

Explore:

A good first step to take when exploring myRAteam is to browse around, or “lurk”. There’s nothing wrong in getting the “lay of the land”. Figuring out who’s active and how they are active is a great way to get to get a feel for the community. However, at some point, once you’ve figured it out, you should participate. Participating means commenting, and sharing. Why is this important? It creates an awareness of you, contributes to the overall tone of the site, and builds up trust with others. No one is here to judge. If anything, this is a place where others understand, vent, and share the small daily victories. It can be encouraging and uplifting to be a part of it. Post an update or photo.

how-id-your-day

In part 2 of this series, we’ll share some simple, but effective tips to making the kinds connections you want. Meanwhile, complete your own profile following the tips above. You’ll be surprised how effective sharing a little bit about yourself can go with building trust among others in the myRAteam community.

MHT_RA_SignUp

51 thoughts on “Getting Started on myRAteam

  1. I think most folks who are diagnosed with RA are frightened with the DX and it’s potential complications, I think it would be a good thing to PUSH the Support levels for everyone to the level that they see they are not alone and can live a good and active life ( if they want to) with RA. I know from experience this can be hard, but it is very doable. I am thinking about some ways to get folks to see look at the positive .I wish I had found this support website much sooner. It is great!

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      1. There are many drugs available, you keep trying different ones until one of them works for you. In my case Enbrel worked vey well but, my insurance company will not pay for enough of it to make it available for me so I had to drop it. $3900.00 per month, my share would be 1995.00. Cannot afford that. Everyone is different so good luck with your appointment.

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      2. Methotrexate, by mouth or injection, weekly dose, is a first line of treatment which for many works well…I have been on the injections since day one (2009) and have done well. My Rheumatologist says this drug has kept many out of wheelchairs

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    1. What is DX..? I agree, since i joined i have learned about so many things that you can do to get a help…..still battle with why this after having fibromyalgia for a good 10 years….but a good day happens and I so thankful…

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  2. I think that having tags etc for lifestyle issues that pop up (ie dealing with grocery shopping when you can barely move, feedback on complementary therapies) would be a good idea. One of the things I find hardest about this disease is how unpredictable it is – listening to those who have already been through what you’ve been through is really helpful.

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  3. I was diagnosed in 2009 after unrelenting, electric type pains in my upper extremities. Much success with weekly methotrexate injections, which I continue. Minor aches and pains but remain as active as I wish and working part time as a nurse

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    1. One of the things I use on my knees back , shoulders and where ever I hurt is voltaren Gel and it’s weird some times it gives me great relief and sometimes not so well . But when the weather changes to bitter cold then it snows I’m in reall pain . That’s when I pull out the handmade heating pad out of rice really helps ! Three minutes in microwave and it’s hot ,,so be careful to wrap it in a towel ..

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      1. Never tried that gel, but do use a “cherry pit” pillow heated in microwave. Right hip and leg have been problematic, seems it may be a back issue. Will restart exercise regime given to me by PT a few years back. Rheumatologist doesn’t feel it is RA

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  4. I really feel that exercise is very important every day if atall possible, and its easier after a warm shower. I have to really force myself some days but Im always glad.I use icepacks on my knees some nights when its impossible to settle!I take Methotrexate tabs weekly , Enbrel injection also and Prednisilone. I was diagnosed with RA in 2007.

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  5. My dr sent me for xrays which h confirmed arthritis and all he said was that there was nothing he could do.gave me green painkillers that’s it.I’m in so much pain I don’t sleep at all

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    1. Hi Nora…we share that name btw😀but anyway regarding you’re issues. Are you seeing a rheumatologist? Are you on any meds for RA specifically? From your comments it sounds like your dr is not serious about treating you so may I suggest you find a “Rheumy” who can offer some medical treatments for RA. There are many meds out there that Drs use in various combinations and dosages until they find the formula that works for you. Start your search on Google for Rheumatologists in your area and start calling. Don’t be intimidated by these guys…you are the patient and that makes you the top priority. And remember they are guessing until you say that something is helping than they can forge ahead with a solid treatment plan. There are a number of therapies you can try as well. I will be trying some warm water therapy in the beginning of March so my comments will follow. BTW, I’m an RN who loved her profession and was told by several neurosurgeons that I could no longer work which devastated me. I kept searching for someone who would give me a different prognosis but was unsuccessful so I went on disability at age59. If I can help in any way my site name is NanaNora . Look forward to chatting with you and God Bless.

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      1. At the first visit to a rheumatologist the doctor will go through a checkup that includes a blood test and physically checking the joints that are involved. A test might be run on the fluid of your swollen joints. The medication is so good these days relief can be felt in days. A biologist may be prescribed (enbrel, Humara, etc.) You may be treated with methotrexate, cortisone, or folic acid. Thinking of you.

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      2. Hi Nora,
        I’m new to this site and I have RA plus other autoimmune diseases. I don’t know how to find you on this site. Is it possible for you to contact me please. I’m having similar problems and could use some help.
        Sweetly,
        Pam

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    2. Please see an RA specialist. I got the same reaction from my internist. When I saw my rheumatologist I had blood work and x-rays done and got a definite diagnosis. We had to try several combination’s of meds, but so far I’m doing pretty well on Humira and methotrexate. With RA you have to be your own advocate. Wish you a peaceful night.
      Lynn Henderson

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  6. I have RA plus austrio arthritis- austrio porosis– ambon wafferin, I had cancer in my T9 T10 In 2007 which effected my spine. I am clean (thank God) I drink oxynom 5mg every night, othetwise I dont sleep with the pain. Regards Maureen

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  7. I’ve been told I have a variety of problems. Reiters syndrome,witch is very painful I got this problem from the Hong Kong flu. Had trouble walking,for three months terrible pain.how do you treat this??????

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  8. hi there I would like advise in coping in a more healthier way in reducing my ra. I’m also suffering from under active thyroid as well as friomalgia

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  9. I was stiff an pain in neck an shoulder fa years needed a womb op woke up choking needed same op again 3 yrs on so opt for epidural An went wrong heart was pounding as I lay on table all staff panicked … An legs never been same I came out an was told my legs would be fine soon. No. They still killin me on fire as we speak , an can’t bare a light cover on them so go to my bed an just lay on top clothed. 3 yrs now. So tired Ov it all now

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  10. This site is very helpful to learn about RA. I was feeling very alone and bitter before I connected! There is also a fine line of becoming depressed due to the constant pain, uncertainty & depletion of your life as you have known it. Honestly, this site allows a connection to others who are dealing with same/similar issues and it is comforting to know you’re not alone! Thank you!

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    1. I completely agree! It has helped me so much to get advice and feel better about myself because I know that this is truly a real illness and we have to do everything possible to fight it! When we have the energy!!

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  11. I was diagnosed with RA in 2009. I could barely walk and dress myself. I was always so fatigued and in pain all over my body. I knew something was severely wrong. They couldn’t diagnose me at my area hospital so I was recommended to a Rheumatologist outside my area. I was in a Clinical Trial Study for almost 6 years and I started another one in June and I am on Methotrexate once a week. Injections or tablets, My problem is I want to be on a drug that is covered under my Medicare plan but I don’t have Part D under my Medicare. I don’t know what to do. It is so costly for any of the RA medications. I am out of the study and right now I am on nothing. Any advice would be greatly appreciated.

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    1. Ask your Rheumatologist about Remicade! It was a lot less expensive on my insurance plan….can you get Part D…I’ve heard that helps!! I put off biologicis for 2 years Try to get something! I know when you are not feeling well it’s hard to make the effort but it does help me!!

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      1. The problem is I don’t know what the cost for each infusion would be. I do know that under Part D. It is considered a High Tier drug. The Co-Pays would be expensive and I can’t afford them. I have been off my medication since March 10th. I am starting to have Flare ups. I can see my Rheumatologist in May. I know that most of the meds are about $2400.00 a month know matter what way I look. I wonder if I could possibly get help from the drug companies. I think I might just try calling some of them. I’ve heard that Remicade is very good and also Orencia. Thank you Meme!

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    2. Both of mine were replaced in 2009. I was 49 and it was the worst thing I’ve ever been through. I woke up twice during the surgery! I don’t mean to be negative, just being honest. I’m starting to have problems with my left knee again and have been reading about a knee revision. Sounds horrible! Has anyone had a revision?

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    3. I have United Health Care – plan F as my supplemental insurance along with Medicare A,B and D.
      The plan F covers my monthly infusion and the medication. Between the UHC and Medicare pàrt B cost me 469.00/monthly but I don’t pay a deductible nor medical bills. For part D, I pay almost 50.00/ month. If I didn’t have this I’d be paying thousands of dollars a month.

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    4. I have United Health Care – plan F as my supplemental insurance along with Medicare A,B and D.
      The plan F covers my monthly infusion and the medication. Between the UHC and Medicare pàrt B cost me 469.00/monthly but I don’t pay a deductible nor medical bills. For part D, I pay almost 50.00/ month. Ididn’t have this I’d be paying thousands of dollars a month.

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      1. This pain is not always manageable but when I’m really hurting I use my heating pad or ice..the pt people warm you up do a little excercise and then freeze you! It usually helps for a while and then repeat. In the meantime watch tv, listen to music, anything that can get your mind off the things that make you feel stress!!

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  12. I was diagnose in 2011 and was put on medicaytion 6 differand tablets but my hands stay swollen and a rheumatologist ad one more tablet and now my pain levels are controlled

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  13. I am being observed for RA but my mother’s body is riddled with the condition. This website only had an option in the questionnaire for a spouse. Is there a reason why they do not opt for family which is a genetic predisposition to the condition?

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  14. Good day, I’m Piet and would like some advice. I’m using methotrexate once a week (25mg) but the only way to control the pain is by taking prednisone daily. Now I’m facing a bigger issue and that is that I’ve picked up about 60 pounds in the last year.

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    1. Hello I am Cindy I have had R A for 10 years I had the same problem you are facing but the Prednisone stopped working for me I am now off of all meds and am facing alot I was on Prednisone for 8 years and now I am stranded if it helps you it is something we have to face but not always easy may God bless you

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  15. Kristen, I use Enbrel and you can get Enbrel Assist to help with cost. I pay $10.00 a month, they pay the rest. Was on Methotrexate but it’s hard on the liver and your allowed no alcohol at all and I enjoy having a glass of wine. Maybe 2 or 3. 😊

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    1. That’s good to know. I have been on methotrexate since 2009. My Rheumatologist only has me on 15 mgs. I take on Thursdays. I also was in a study for almost 6 years. I did ask my doctor about Enbrel and Orencia and shrugged me off. I think its because they (my nurse and 2 doctors) wanted me in the study. The drug did really help me a lot and I had no adverse side effects from the study drug or the methotrexate. Unfortunately last May the drug stopped working. My body became immuned to it. I will see what my options are wen I go back next month. Thank You for the information.

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  16. Hi everyone, I am struggling these days and I can barely walk. My knees are swollen and my hip is so painful. As a result am stressing. I don’t know if you have ideas of managing stress caused by these pains?

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