Alexa

Alexa

Real Profiles of Rheumatoid Arthritis
Photos © Alexa

Name?

Alexa

Age?
21

Location?

Clinton Township, Michigan, United States

How long have you lived with RA?

9 years.

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

I would say be strong, don’t let it get you down and discourage you, you’re still normal and can do what everyone else can do, you’ll just do it a little bit differently. I would also tell them to go to Rheumatoid Arthritis Guy because having others that share the same struggles as you do helps you feel as though you have your own little support system cheering you on.

Do you use any mobility aids?

I do not use any mobility aids, although I have been thinking about getting some.

How has living with RA helped to improve your life?

I take less for granted now and really appreciate the days where it isn’t painful to do my favorite activities. I really appreciate those who understand my condition and it has made my family and friendships grow stronger. My entire life attitude has been improved and I always try to think positively about my RA. Because of this, my positive thinking carries on to other things like my attitude on being able to do well in school and at my job.

Do you have any visible signs of RA?

I have some nodules on the side of my foot that is slowly worsening and my toes are swollen to different sizes. My second toes look completely different from each other because one has RA and the other does not. There is often swelling but it comes and goes.

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

Painting, painting gets me through everything, it is the one thing that I can really do that doesn’t hurt. When I paint, I forget the worries of arthritis and can even sometimes forget I have it in the first place. Another emotional coping strategy that I have is going on Rheumatoid Arthritis Guy, I can laugh at those “You know you have RA when…” comments.

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

I have been trying to fix my diet and exercise more to strengthen my body. I am on indomethacin tablets but have been thinking about going on Humira. I would prefer to get into remission through diet and exercise but I think I will give other medications a try to see if it can prevent joint damage better.

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

I’ve got a wonderfully supportive family and boyfriend that love me and want the best for me. I love teaching and can’t wait to do my student teaching this year with second graders. I also love traveling, it is an adventure for me (plus the fresh air in the England countryside does wonders for my mood). I am so blessed to have the opportunities that I am given and the strength that I have been able to carry throughout my difficult times.

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Holly Dennett

Holly Dennett

Real Profiles of Rheumatoid Arthritis
Photos © Holly Dennett

Name?

Holly Dennett

Age?
22

Location?

Surrey, England

How long have you lived with RA?

I think I had been living with RA a lot longer then I think I have, I was diagnosed when I was 18, but I simply went to the doctors for a fat joint on my little finger which I had for a few years and wasn’t going down. I used to get really really bad ‘growing pains’ in my legs when I was a child. I also have Raynaud’s phenomenon, and possible lupus. Which mean I have very cold hands and feet which I was told can come with RA.

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

At the moment I’m unsure because I still feel I need some advice myself to be honest. I would say be honest and realistic with your body and don’t push it too much. I have a bad habit of if I’m ill with a flare up or any illness the minute I am feeling better I try to go back to normal like nothing has happened and I don’t give my body enough time to fully recover and end up worse in the long run. Now I have learnt that I have to be slightly more sensible with my resting and looking after myself. For example if I know I’m going clubbing on a Saturday and will be drinking and wearing high heels then Sunday all I have to do on Sunday to purely rest my body with my legs up, otherwise it’s a down wards spiral of tiredness, sleeping then even more stiffness and pain than normal.

Do you use any mobility aids?

I need to change my car into an automatic as I can’t drive a manual anymore due to the pain in my knees from changing gear. But normally No, but when I have a flair up I do need a walking stick or something to help me walk.

How has living with RA helped to improve your life?

That’s a very hard question, I personally can’t think of anything that it has helped me with; it does slow me down and irritates me on a daily basis. However I don’t take my walking and life for granted anymore and I appreciate ‘good days’ so much, because I know tomorrow I might be a ‘bad day’ and I won’t not be able to walk or get out of bed. I also have found out who my real friends are, I know who is truly there for me when I need it most.

Do you have any visible signs of RA?

I have swelling on my fingers which can be red and people say I ‘carry myself’ when I walk, due to stiffness and pain. When I’m in a flare up it is very visible because I am unable to walk at all or move ‘normally’ as it affects most of my body, feet, knees, hips and back etc..

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

Well this is interesting because recently I haven’t had any problem with coping with it emotionally until a few months ago when I started my current huge flare. Normally when I have a flare I do get very depressed, the only thing that does get me though it is that I know when I’m out of the flare I do automatically feel back to myself again. For the past few months I have found it harder to stay so positive, as my RA is gradually getting worse. I am a student nurse which I am finding it very hard to learn about the condition from a nurses few instead of a patients few. I do find shopping helps a lot!!!!!!!! (it is not the best form of coping for my bank balance) For me personally if I feel good on the outside with buying nice clothes, doing my hair, painting my nails, it covers up and takes me away from the feelings, the pain and the stiffness that is going on inside my body and makes me feel better about my inside self. I try and write everything down, write a dairy most days so I can let all my feeling out because they build up inside and then I explode. Also never stress over anything because as soon as I do, that causes a flare up and then things will get worse, so I try and stay as relaxed as possible.

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

I’m taking hydroxychloroquine and a large dose of vitmin D, which is helping me at the moment. I was on regular prednisolone and ibuprofen for pain, but a few weeks ago it caused a hole in my stomach wall, so I am unable to take them anymore. So now I’m on other medications for the hole in my stomach.

I also don’t eat Dairy or eggs any more, for a year I was able to control my RA with my diet which was really good. I now know instantly that I have eaten dairy, in about 30 mins or so I can feel the inflammation building under my knees. However at the moment I need the medication as well as my symptoms have been getting worse.

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

Only that I do try to live my life to the full when I’m on a ‘good day’ because you never know when it is going to be a ‘bad day’. I still wear my mega high heels, even though they are going to make my knees hurt. But in my few there might be a time in my life later on that I might not be able to walk at all. I would like to talk to any one of a similar age and get some advice with coping emotionally or anything. My Facebook page is www.facebook.com/holly.dennett.

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Krystle Smith

Krystle Smith

Real Profiles of Rheumatoid Arthritis
Photos © Krystle Smith

Name?

Krystle Smith

Age?
26

Location?

Massillon, Ohio, United States

How long have you lived with RA?

I’ve been battling RA for 25 years. I was one of the youngest patients to ever be diagnosed in the northern Ohio area (at 9 months old). Luckily, I’ve had an amazing support system to stand beside me through all the trials and hard times that have been sent my way because of RA.

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

The best advice I ever received was to try to stay as active and as positive as possible, even when it feels completely impossible. My parents always tried to provide me with as normal of a childhood as possible, and although I knew I was different from other kids my age I never felt out of place. However, there were many times when I felt alone and would question God’s reasoning behind all my health complications. Connecting with other RA warriors has been a great help for me. I no longer feel alone and love talking to people who actually understand. I would tell anyone who has been newly diagnosed to keep that positive attitude and connect with other people who have the disease because unfortunately, most people don’t understand the disease unless they have personally dealt with it. I’ve tried many times to explain what is happening to my body to my friends, but some of them just don’t get it. Hearing the word “arthritis” is completely deceiving when it comes to RA. I don’t think anyone realizes just how much of a person’s life the disease impacts.

Do you use any mobility aids?

When I was younger, my biggest problem joints were my knees and wrists. My knees were locked at 90 degree angles and my family was told I would never walk again. I slept in leg braces every night and fortunately I am able to walk.

How has living with RA helped to improve your life?

Although sometimes I feel like my younger years were stolen from me, I try to stay appreciative of the things I do have and the things that I can do. I know that for me, this has litereally been a lifetime illness but God has a reason and a plan for me-I hope I can figure out exactly what that is sooner than later.

Do you have any visible signs of RA?

I have visible contractions of my wrists and they are stuck in one position. This makes it very difficult to do simple things like open bottles, to cut vegetables. As I’ve gotten older my neck, back and elbows have become more and more bothersome.

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

I try to count my blessings and remind myself that things could always be worse-but having an understanding support system has made the biggest difference in coping with RA.

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

My current treatment consists of Enbrel injections, plaquenil, steroids & lots of vitamins to boost my immune system & treatment really takes a toll on my body. Because I haven’t seen much improvement, my meds will be changing once again.

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

I have days where I literally cannot turn my head. I was also told I have visible bone thinning (osteoarthritis) now on top of everything else.

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Jordan

Jordan

Real Profiles of Rheumatoid Arthritis
Photos © Jordan

Name?

Jordan

Age?
21

Location?

Texas, United States

How long have you lived with RA?

2-½ years.

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

Don’t be discouraged, overwhelmed, or pressured by your new diagnosis. And don’t let RA keep you from having fun, you can make it!

Do you use any mobility aids?

When flare-ups are bad, I do have to use a cane in the mornings to get around. I’m constantly trying to stay away from stairs as they are my hardest obstacle!

How has living with RA helped to improve your life?

So far, I’m still learning to handle my rheumatoid arthritis. It started off mild and has now grown to severe. On a positive note, it has taught me to be appreciative of what I can do and not discouraged by what I CAN’T do.

Do you have any visible signs of RA?

I have a chronically swollen right knee after having surgery two years ago for removing a (luckily) benign tumor, my scar is 5 inches long. I also walk with a noticeable limp some days and recently me left elbow hasn’t been able to straighten completely, so I have to keep it bent most of the day.

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

I pray every day, read my bible, and put my trust in God. He’s the author of my life and I know despite my illness, I’m in His hands.

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

I’ve been pressured countless times to get back on methotrexate and enbrel, but I’m highly uncomfortable with their side effects in the long run. I’m taking a natural approach by starting a healthy, lean diet, there’s a ton of research on foods to stay away from, and using a long list of natural vitamins and herbs to help reduce inflammation and even pain.

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

I’ve been blessed to have a great support group around me, I’ve got a wonderful (new) husband who takes amazing care of me, and great family and friends that are always encouraging and offering advice. Very thankful for that!

3 Comments
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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