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Vicky Besley

RA Guy Real Profiles of RA 3 Comments

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Name?

Vicky Besley

Age?

27

Location?

Worcestershire, England

How long have you lived with RA?

4 years.

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

Make sure you are comfortable with your rheumatologist as it makes the whole process a lot easier. Don’t be scared to ask lots of questions no matter how trivial but most importantly don’t be afraid to ask for help.

Do you use any mobility aids?

Yes I have an electric wheelchair for in the house, a manual wheelchair for going outside in so people can push me. They were hard to accept but they mean I can still do things I enjoy.

How has living with RA helped to improve your life?

Its made me realise how strong I actually am! Its made me stop and enjoy things more and reminded me to have fun it lifts your spirits when you have something to look forward to.

Do you have any visible signs of RA?

Yes my hands are bent over, my left knee has fluid and often swells.

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

To just smile and get on with it, I tell myself I can get through this, a smile helps.

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

I have Reiki every week which helps lower my pain levels, also pain killers nothing further (see below).

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

My treatment has been affected by the fact i also have a heart defect called Tetralogy of Fallot which has had an effect on what treatment I can have and also the level of pain killers I can take.

Deb

Deb

RA Guy Real Profiles of RA 11 Comments

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Name?

Deb

Age?

47

Location?

Downingtown, Pennsylvania, United States

How long have you lived with RA?

I have lived with RA for probably 10 years, but was diagnosed 2 years ago.

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

The advice I would give someone who just found out they have RA is, read up on the disease, join support groups and ask your rheumatologists tons of questions.

Do you use any mobility aids?

I do not have mobility aids.

How has living with RA helped to improve your life?

I think living with RA has slowed me down considerably. I appreciate the small things in life.

Do you have any visible signs of RA?

I do not have visible signs of RA, but the words fatigue are written all over my face.

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

My favorite coping ability with RA is a soaking hot tub or shower. Take life slowly. I try to stay positive, everyday.

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

20 Mg of Methotrexate once a week. Folic Acid daily.

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

I think a small part of me is still in denial. I used to be so active, so full of energy. Now, just making it through a 8 hour work day, is a huge accomplishment. I try to learn as much as I can of this disease, as well as, the others I have.

Joni S

Joni S.

RA Guy Real Profiles of RA 8 Comments

Real Profile Joni S

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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.

Kimberly Cooper

Kimberly Cooper

RA Guy Real Profiles of RA 1 Comment

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Name?

Kimberly Cooper

Age?

26

Location?

Fort Myers, Florida, United States

How long have you lived with RA?

I was diagnosed in March 2002 when I was 16, but spent about 1.5 years misdiagnosed as having Osteoarthritis.

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

Don’t let the anger get to you. When I was first diagnosed I found myself in a mixture of confusion, anger and self loathing. I was angry at all the things I couldn’t do, and at people for being able to do simple things like walking and writing with ease.

Do you use any mobility aids?

I have a cane that I have to use, specifically with an ergonomic handle to ease on making my hand sore from lots of use.

How has living with RA helped to improve your life?

Having RA made me grow up and mature emotionally and mentally. While other high school kids were concerned about typical high school drama, I had to re-evaluate my entire life. It was a struggle, but I came out better for it, and with a greater respect for the joys that life has to offer!

Do you have any visible signs of RA?

My right elbow has completely fused, and as a result of the constant inflammation from when I was misdiagnosed, it caused either dislocation or mini-fractures that have warped my tibia and fibia (my friends call it my T-Rex arm). I hope to have a joint replacement and reconstructive surgery over this summer. I have large scars on my left foot because my left ankle had fused in a terrible position, so I had a surgery that essentially broke the joint and put pins in to ensure fusion so that my foot sits flat, called an Arthodesis. My surgeon also had to do an Midfoot Osteotomy to make my toes lie flat. 

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

I talk to my loved ones about my pain level and any troubles I’m having, so that they are informed and can assist me when needed. I also stop myself when I’m feeling self-loathing or pitying myself, and instead find ways to show myself that I’m still useful. I also temper my pride, because I know that I can be bull-headed and it causes me pain and distress when I refuse to accept help.

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

I am currently on Methotrexate for my RA, and I’ve altered my diet because I found that too much red meat added to my inflammation.

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

I love to knit, which I find helps keep my wrists mobile, and through the support and encouragement of a great teacher in High School, I have had the dream of being a teacher since age 17. I have had some medical roadblocks, but I’ve finally gotten back into college to be a high school teacher!

Kathryn

Kathryn

RA Guy Real Profiles of RA 4 Comments

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Name?

Kathryn

Age?

22

Location?

Boulder, Colorado, United States

How long have you lived with RA?

Only about 14 months. I developed symptoms in January 2011, and was formally diagnosed in August 2011.

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

Stay positive! Explore all your options and keep an open mind. Living with arthritis and chronic pain is tough, but allow yourself days to feel sad. Don’t let your medical team call all the shots – it’s your body and you definitely know it best. A good relationship with your doctor is key, so exercise your right to “shop” around for doctors, and find someone who really fits for you! Make sure you’re heard when you need to be; it’s okay to speak up! Don’t let your arthritis define who you are – work with your physical limitations, but don’t let them keep you from doing what you love.

Do you use any mobility aids?

I rely on my cane to help me walk, especially on the stairs, and I will sometimes wrap my swollen wrist in an Ace bandage to support it when I need to get some computer work done.

How has living with RA helped to improve your life?

Before my diagnosis, I struggled a lot with staying positive about my life. Now, I am incredibly positive most of the time! Life with arthritis can be pretty sad without constant positivity and a great attitude. I’m also learning a lot about how my body works and how I can work with it. I have a bunch of free time since I took a semester off of school, so I have used that time to learn a lot about autoimmune diseases and the best ways to take care of myself. After years of school and loads of stress, I’m finally learning to relax and do what’s best for me. I sleep in, take long naps, and read as many books as I’d like. I work from home, and develop to do lists that allow me some flexibility and time to relax. In middle and high school, I was a pretty decent artist, but dropped art in order to focus on my college studies. Now that I have time off, I’m getting back into my art and really loving it! I’ve also started collecting and planning some vegetarian and gluten free recipes; I hope to start my gluten free lifestyle soon!

My RA diagnosis has also made me a more compassionate person. I sympathize with other chronic pain sufferers, and am becoming active in a number of chronic pain circles.

Do you have any visible signs of RA?

I have rheumatoid nodules on my thumbs, a great deal of swelling in and around my right wrist and ankle, and swelling in my knees. My fingers are also frequently swollen. My gait is very visibly affected, as I rely heavily on my cane and tend to walk at a slow pace with stiff knees.

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

I have a wonderful support system in my family, friends, and especially my boyfriend DJ, who is my constant caretaker. I enjoy fresh flowers and try to have them in my home as often as possible, where they brighten up my day. I rely on my loved ones to help me through my rough days, but I’m not afraid to cry, rage, or just have a mopey day every once in awhile. Since my diagnosis, I have also started blogging as a way to express myself, release some stress, and cope with the day to day struggles I experience. I love reaching out to other RA and chronic pain sufferers and have made some great new friends through blogging (My blog is here.) When my wrists feel okay, I like to open the windows and sit in the sunlight to work with my sketchbook. As often as I can, I go out to visit my horse, Uno. I rescued him as an 8 month old, and he’s been mine ever since! He is such a sweetheart, and gives me extra cuddles when I’m feeling down.

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

I’m currently on a weekly injection of methotrexate as well as a weekly injection of Humira. I take Plaquenil twice daily and a folic acid supplement every day. My boyfriend and I make it a habit to go for short walks as often as possible, and I stretch and do a little yoga daily. I’ve recently started drinking a glass of 1/2 water and 1/2 organic tart cherry juice daily.

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

I hope to get back to school in the fall, and will complete my undergrad degree in Environmental Studies by next year. I’d like to get my masters degree in Environmental Public Policy. My ultimate goal is law school!