Joni S

Joni S.

Real Profiles of Rheumatoid Arthritis
Photos © Joni S.

Name?

Joni S.

Age?

35

Location?

Guangzhou, China

How long have you lived with RA?

Over 17 years.

What advice would you give to someone who has just been diagnosed with RA?

Never give up hope! You may have to change the way you do things but they can still be done! Continue to do light exercise and keep moving. With RA if you don’t use it you sometimes lose it.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I’ve always felt a sense of urgency to find a way to do the things I want…now! I understand that my RA will probably only get worse so I try to really live life! I probably also have more compassion for other people and a greater amount of patience. I appreciate the little things and tell people how much they mean to me.

Do you have any visible signs of RA?

Yes. The joints in my right hand are quite deformed and it is very noticeable. Both wrists have nodules. My left arm no longer straightens all the way because of the deformity of my elbow. I walk with a limp on bad days.

Can you please describe some of your favorite coping strategies for living with RA?

I enjoy meditation and believe it helps tremendously in coping with the pain.

Can you please describe your current medical (traditional and alternative) treatments?

I currently live and work in China and I’m on TCM (Traditional Chinese Medicine). I love it! In the past I have been on Methotrexate, Enbrel, Daypro, and other NSAIDs. Currently the TCM is working well for me.

Is there anything else about yourself that you would like to share?

This is the first time I’ve ever shared my experience in a forum such as this. I’m more of a “get on with it” type of person and don’t like to dwell too much on my illness. In finding this website I’ve found great comfort in hearing about other people’s stories. I sometimes feel alone in this journey, though I have a great support system. It is encouraging to hear from others who will never give up the fight.

8 Comments
8 comments
  1. Deb aka abcsofra says:

    Oh my….lions and tigers and bears! And how did you get so close up with the tiger? I so love your attitude and although I have had ra for 14 years now I so agree with you. Just do it! That is my new motto. And do it the best way, anyway I can. Thank you for sharing your story and the lovely photos.

  2. Lily says:

    Joni it was great to read your profile! Hope you are enjoying your time in China, so exciting! :) I spent some time in China teaching also. While I was there I was able to get some Chinese medicine, but it never quite worked for me. Can I ask what you’re taking now? Are you completely off your “western” medications? That is pretty great if you are!

  3. Sharmila Chakraverty says:

    I am 57 yr old female and just started feeling pain in my hands, wrists and in my knees. I am afraid it probably is RA. I am in constant pain and it started about a year ago and seems progressing fast. How do you cope with the pain? Don’t want to take to many drugs. Where do I find out about any alternative treatments? I wish you the best.

  4. Shan says:

    Sharmila – do you live in Asia? If so, there are Chinese herbalists and acupuncturists everywhere. I’m not too sure about America – but I’m sure you could also find them around the place. I suggest starting as soon as possible so that the Chinese medicine can begin its magic. I too am medication free – as from the start of this year, thanks to the Chinese methods. All the best.

  5. Joni says:

    Hi all, I’m sorry I’m just seeing some of your comments. I am in America now visiting family for the summer. I forgot to mention that I am still on 2.5 mg of Prednisone daily. I have been on it since I was 17 years old and this is the lowest amount I’ve been able to get down to yet. I have been on the TCM for about 5 months now and LOVE it! I feel sure that I will eventually be completely off of Prednisone. Shan, I will read your blog. It is great to hear from a fellow TCMer! Sharmila, I too want to be on as little medication as possible. I highly recommend meditation, a healthy diet, and low impact exercise to help with inflammation and pain. I am always amazed at how much better I feel after meditating.

  6. Britt says:

    This is very inspiring. I am 23 living with RA since I was 15, and though my disease is currently in remission (because of harsh drugs Remicade/Metho) I battle depression everyday. It’s always helpful to hear the stories of young women like me who can actually understand my struggles. I will take your “get on with it” mentality to heart and let that motivate me to enjoy everything I can! Thanks for sharing–I needed this today!!

  7. Joni says:

    Hi Britt,
    It is so hard to get on with it some days. I understand the depression. It is hard to get away from with this disease. Meditation has really helped me a lot with regards to the depression and control of overall pain. When you are having a bad day, know that you are not alone. There are so many of us battling this disease…one minute at a time. Take care! :-)

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>