Nathalie Bennett

Nathalie Bennett

Real Profiles of Rheumatoid Arthritis
Photos © Nathalie Bennett

Name?

Nathalie Bennett

Age?
32

Location?

Toronto, Canada

How long have you lived with RA?

30 years.

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

Well I was diagnosed with JRA at 2 years old, so I’m not really sure what I would say except, this is not a death sentence, you’re just on a different path now. Parents don’t read all the Internet information on medical websites, they will drive you nuts. Talk to real people and other children as their experience will help you gain some perspective, but remember that each person who has RA will have different symptoms, and will require different treatment. Always voice your concerns in the doctors office, and if you don’t like your doctor, you can always look for a better one. My physician who treated me as a child is still in my life, and makes times to see me when I have concerns or good news! Your doctor will become family! Always do what’s right for your child, they will need a lot of love and support. This advice kinda blends over to those who are not children and were diagnosed in there late teens to older adulthood. For these people here, I would say that learning about your own diagnosis is the best thing you can do for yourself, for example in research articles, or other health professionals. I know everything about my RA now, it may take awhile, and remission does happen, so keep positive and take it one day at a time.

Do you use any mobility aids?

No, I do use mobility aids.

How has living with RA helped to improve your life?

Now this question is funny to me because, at first thought I was like ummm RA has ruined my life. My now that I think about it more deeply, I only had 2 years without it and I was an infant. So RA is my life, it has helped me learn a lot about myself and become a stronger woman in life. It’s what drove to me to become a nurse, because I had great nurses who help take care of me growing up, and I wanted to be just like them…and I am lol! It has shown me who my true friends are. When I was kid I got a wish from the WISH foundation to Disney world and it was amazing! It gives me a better perspective on life, meaning I try to live life to the fullest. I say try because sometimes my RA roundhouses my butt, so I remember to take time and relax to roundhouse it right back!

Do you have any visible signs of RA?

Yes I do. In my hands my knuckles are big, I have limited range of motion in my neck, and I walk with a “gangsta” limp!

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

My favorite emotional coping strategies are spending time with family, my new niece and nephew, my bigger nephew, my friends, my colleagues, and sleeping on my foam mattress!! I love watching comedy movies, laughing always relaxes me afterwards. Listening to music that goes with my mood, dancing, cooking, did I mention sleeping on my foam mattress ahh that is truly heaven! Oh and my Xbox 360, ipad 2, and PS3 also work wonders!

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

Ok so as I mentioned before I have had RA for 30 years. I have tried so much medications that it’s crazy!! But, during my last biologics drug simponi, I said I am done! My doctor said, you have been on everything except Actemra. I couldn’t believe that after 30 years of this rollercoaster, there was nothing left to try. So, I said fine ill try Actemra. Now, I know that everyone responds differently to medications but Actemra … Oh how I love thee! My CRP and ESR Levels were sky high and now they’re both

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

I would like to share that, YES. I am 32 and I know I look 16. I don’t use mobility aids because I had my hips replaced when I was 26/27. To open jars I either run them under hot water or tap the edges with a knife and it seems to work. Feel free to ask me questions and I will respond! My email is nursebee2009[at]gmail.com.

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Maira

Maira De La O

Real Profiles of Rheumatoid Arthritis
Photos © Maira De La O

Name?

Maira De La O

Age?

22

Location?

Alexandria, Virginia, United States

How long have you lived with RA?

4 years.

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

I would tell them to have faith that they’ll be ok and to look for their family for support because they’ll be needing a lot of it. Also to look for help if they feel depressed because there are other ways out besides ending it all, and I say this because I have been there and at the time my only motivation was my newborn child.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I take everyday as if it’s my last one and I enjoy every minute I can enjoy with my son without having to struggle.

Do you have any visible signs of RA?

No, well my right pinky is crooked and it is noticeable.

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

Watching my son grow gives strength and just hearing his laugh makes me feel better and makes ME want to smile as well. I love him to death and he makes me want to live long and hard.

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

I get an IV Infusion once a month I am not quite sure of the medication name, I think its tolanocitabe??? I also take Leuflonomide, Calcium and Alendronate.

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

I was on steroids for over a year after the birth of my son. You can imagine what I looked like. I used to be a skinny girl and I got so big in like 3 months that I didn’t even look like myself. Some of the pictures I sent you I still look a little swollen but I don’t have any when I was really fat. When I was on steroids is when I wanted to hurt myself but the only reason I didn’t was because of my son. It was hard at first and my pregnancy was with no doubt the most painful 8 months of my life. I’ve been through so much and still 4 years after people think it’s whatever, they don’t care to know that it’s serious and very painful to live with RA. I have been through so much and I really love reading the same stories others tell it helps me not feel like I’m completely alone with it in this world. Still now I get depressed and sometimes I wish I could find a cave very far away and just hide for the rest of my life, and when I feel like that I like to be left alone and I hide in my room and just cry because my life just started and RA is a lifetime of pain and suffering.

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Annie

Annie

Real Profiles of Rheumatoid Arthritis
Photos © Annie

Name?

Annie

Age?

19!

Location?

Plainfield, Indiana, United States

How long have you lived with RA?

I had gotten very sick with RA around 7 years ago and finally got diagnosed 6 years ago.

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

I would advise people no matter what age they may be is not to be scared. This is just a “speed bump” in life. By having this disease, I believe it only makes us stronger. Also, don’t let people degrade you for it. This makes you special.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I’ve had numerous people came up to me and telling me that they never knew arthritis can happen in younger people. I’m ready to be an advocate for those my age to tell people that I’m not even half the population with people my age that has a form of Arthritis.

Do you have any visible signs of RA?

As of right now my fingers are turning to the side, but I have “ring straighteners” that veer them back to being straight. My fingers and toes are like normally very swollen. Thankfully, I have no more visible deformities. Unfortunately, the RA had gotten into my joints such as my shoulders and hips.

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

I absolutely love to cry. I believe it can be the best way to let out frustration. When I am stressed because my doctor’s appointments are not going the way that I want to go, or I just feel like a blob, I just sit in my bed and listen to music.

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

Currently, I am taking plaquenil, along with B-12 injections. Other than that, I like to be on less medication as possible.

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

Along with RA I was diagnosed with multiple other health problems. I was diagnosed with Sjogren’s syndrome, Lupus (yay for Rupus!), and Crohn’s disease. Thankfully I was diagnosed with RA so I can handle all these other “speed bumps”! I love to joke around about my diseases’, but I will never let them tear me down.

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SAMSUNG

Vicky Besley

Real Profiles of Rheumatoid Arthritis
Photos © Vicky Besley

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.

3 Comments
Deb

Deb

Real Profiles of Rheumatoid Arthritis
Photos © Deb

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.

11 Comments