Kayleigh Payne

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Kayleigh Payne

Name?

Kayleigh Payne

Age?

24

Location?

Westmeath, Ireland

How long have you lived with RA?

Almost 12 years.

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

GET THE RIGHT MEDICAL TEAM AROUND YOU!!! Shop around for the right consultant for you if needs be, I wish I had! I could have saved myself years of agony and severe damage. Also stay positive, its power is invincible. And meet other people with RA, whether in person or online, it has massively improved my outlook.

Do you use any mobility aids?

Sometimes a crutch, very often my husband!!!

How has living with RA helped to improve your life?

I am so empathetic of people with long term illnesses and I doubt I would be so compassionate if I had not felt the pain I have! Also, I am super strong because of it, I can get through anything!

Do you have any visible signs of RA?

It depends how inflamed I am. When I’m in a flare I have little to no mobility which is pretty obvious. I can have a limp at times.

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

Laughing!!! I am lucky to be surrounded by very funny amazing people who always make me giggle and help release those happy hormones.

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

I’m currently on methotrexate. I also use yoga to keep me mobile, and I’m part of a support group that focuses on “living well with arthritis”.

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

I am an eternal optimist. I have been through hell and still have severely bad days, but I let nothing hold me back – I have travelled the world, work full time, do a lot of charity work, and have gone back to do further education, and I also got married this year to a wonderful man and my best friend and plan on having a big family! You can do anything you want, RA or not, once you set your mind to it and make a proper plan.

I would also like to highlight my Young Arthritis Network facebook page for anyone who wants to get involved in the group.

Chad Fisher

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Chad Fisher

Name?

Chad Fisher

Age?

40

Location?

Edmonton, Alberta, Canada

How long have you lived with RA?

I was diagnosed with JRA at age 10; that was 30 years ago.

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

It’s ok…actually it’s good to cry, but don’t dwell there. Stay as active as possible and don’t let people do everything for you. Fight to the last moment before giving up on an activity or action. The longer you can do it, the better. Yes, it will hurt, but the benefits will outweigh the pain in the long run. Disclaimer – use wisdom of course, everyone’s situation is different.

Do you use any mobility aids?

None. I am stubborn and refuse anything. My wife sometimes bugs me about using a cane, especially in winter. Not going to happen.

How has living with RA helped to improve your life?

Frankly it hasn’t. I don’t say this out of bitterness or anger, but I think it impossible to suggest a disease that steals life and brings pain as something I can compliment or suggest as an improvement to my life. I have had an opportunity to learn many things, but I didn’t need JRA for that. Let’s just say I have had 30 years to think about this. I have tried to put the whole positive spin on it and in integrity of heart I can’t. It doesn’t make any sense to suggest this has benefited my life.

Again, this is not out of bitterness or anger, and I realize many people who are newer on this journey may try to look for the silver lining, and I understand that. I am an eternal optimist, but my 30 years give me a lifelong perspective that is different. JRA is trying to destroy my body, and I my goal is to crush and destroy it by living life to the fullest. JRA, you are going down!

Do you have any visible signs of RA?

Yes, my fingers and knees have some deformation. I walk with a pronounced limp.

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

I refuse to give up or let this disease rob me of my life and happiness. I learnt from a young age that attitude is everything when fighting this disease. JRA can take my mobility and try to put me in pain, but it cannot have my attitude. I guess after so many years it has become ingrained in me to keep a healthy attitude, that it is now natural.

Helping others is also a key. Being a pastor I am involved in people’s lives, and I have realized (and not to minimize the pain of JRA) that sometimes emotional distress hurts a lot and may be just has hard to handle as physical pain. When I help someone hurting, it certainly gives me a lift. I would also add my faith has given me emotional strength.

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

I don’t take any medications outside of the occasional Ibuprofen. I grew up when treatments and technology were limited. Doctors and Rheumatologists, for the most part, prescribed me large doses of Tylenol and Aspirin. Due to this, I have learned to force my body to listen to me, and this is how I manage my pain. It has led me to prefer to live as medication free as possible. I realize this is not possible or appropriate for everyone.

I use diet, exercise, faith and attitude as my main treatments. I try to eat healthy and I exercise by walking on a treadmill and lifting weights. I maintain emotional strength through prayer and my faith.

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

I don’t have all the answers. I love people, and I hurt with those living with such a horrible disease. I want to use my experience to inspire others and let them know they can thrive and not just simply exist. Oh and being Canadian – I love hockey!

I have a blog, which can be seen at: www.livingwitharthritistoday.com.

Lyda Clark

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Lyda Clark

Name?

Lyda Clark

Age?

24

Location?

Kailua, Hawaii, United States

How long have you lived with RA?

12 years – yeesh! Diagnosed when I was 12 years old.

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

Don’t get discouraged. It is possible to live a normal, happy life with RA. Take extra time to understand your body, your mind, and your strengths and weaknesses. In order to keep afloat you have to be very in tune with your needs. Also you must learn to be your own advocate. When it comes to treatment, doctors, and just dealing with people on a day-to-day basis, you need to know how to stick up for yourself and be honest with yourself about your needs.

And do your best to keep positive. There are a lot of things that have the ability to bring you down – pain, low energy, difficult people – as long as you can keep a positive outlook on your life you can overcome those things. I know it sounds easier said than done, but it’s important to keep your head held high. Learn to laugh and you’ll be fine.

Do you use any mobility aids?

Luckily, on a daily basis, no. Though on my worst days, when there is extreme swelling, I wish things were easier. The only thing I change on a regular basis is my prescription bottles from the child protective caps. Ha!

How has living with RA helped to improve your life?

I have become much more self-aware than I think I would would be had I not been diagnosed with RA. At times I’m sad that I lost a big part of my adolescence from being diagnosed because I had to grow up quickly. I had to learn to take care of myself at a very young age and I always felt different from my peers. But in a way I wouldn’t change a thing because it has made me into the person I am today. I’m honest with myself, I’m tougher, able to communicate better with others, and I’ve connected with a number of people that I never would have met if I wasn’t involved in the arthritis community. Life can be difficult but I’ve learned to see the positive more often than not.

Do you have any visible signs of RA?

Not that I know of! I do my best to keep my RA to myself, though my husband always seems to know when it’s a good day or a bad day. Only when I have swollen joints is it apparent.

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

I’ve always been the type of person to crack jokes when things are tough. I like to find something to laugh about to keep from getting too down. In the last few years, though, I’ve been getting better at talking about how I feel, especially with my husband, and I’ve realized that saying things out loud helps me cope better than anything. Even if it’s just a “ack, I feel like crap today,” it’s better than keeping it to myself. About eight months ago I started a blog talking about my life and arthritis and it has been a huge help. Before that I was very private about my arthritis, but it has pushed me to open up and discuss it – a very good achievement.

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

Currently I am taking Methotrexate and Enbrel to stabilize, but I have been on many other arthritis medications in the past. Most recently I was on Remicade (for about five years), but I decided I needed a break from such a harsh medicine, so with my doctor’s support, I took six months off from meds. It was a great experience but unfortunately I learned I need a little help, so I started up with Enbrel for the second time since my diagnosis. I also have an emergency bottle of Prednisone in my medicine cabinet for any surprise flares.

I’m a definite believer that diet and exercise can make a huge difference on life with arthritis. I did an elimination diet to find out if I had any reactions to specific foods and learned that dairy products and many grains cause significant pain in my joints. I switched to a “paleo” diet and also got connected with a personal trainer, recommended by my doc, who specializes in helping people with physical issues of all sorts. Now I try my best to have a good balance of diet and exercise along with my prescriptions to treat my RA. So far it’s going well!

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

Recently my husband’s job moved us from the Pacific Northwest to Oahu, Hawaii. It’s been a crazy transition, and I’m still trying to figure out how the change affects my arthritis. So far the stress of moving has made the biggest impact, but constant barometric pressure should be a positive! The process of moving and finding a new rheumatologist are added to the things I currently write about in my blog: lydaclark.blogspot.com.

Other than that I write mostly about my life being young and married, parenting two kitties, and attempting to figure out what to do with my life! I love meeting new people through the blog, especially others with arthritis, and I post something new every day. I started the blog with other young adults and kids with RA in mind, knowing that the most positive support is simply to see someone else out there who has RA living a normal, happy life. I hope it helps!

Cammie Solis

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Cammie Solis

Name?

Cammie Solis

Age?

50 years young.

Location?

Phoenix, Arizona, United States

How long have you lived with RA?

With an official diagnosis 4 years. However I had pain, stiffness and swelling at least 1-1/2 years prior to that.

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

First and foremost do not panic. You have RA, it does not have you. It does not make you any less than you were before; It certainly does not define you. Then, take a deep breath and begin to find out all that you can about RA. Be an informed and empowered patient, it will make you a better advocate for yourself.

Also, listen to your body and find a doctor who listens to you and who values you as the most important stakeholder in your care.

Do you use any mobility aids?

It took me a long time to admit I needed it, but I have a cane that I use when I have need of it. I also use an electric can opener. I really need to find a good tool for opening jars though. It’s on my RA “wish list” I use a brace for my hands when they are acting up. A few months back I spontaneously damaged a tendon in my left thumb. (RA can do that.) I had to use a brace for a few weeks then.

How has living with RA helped to improve your life?

It has given me a greater awareness of just how precious every moment is. I take nothing for granted anymore. I want to make every moment count in a positive way. Even though it isn’t always easy I want to take even the bad moments and make something positive from them.

Having RA has helped me to slow down and to pay attention to things I might have otherwise missed because I was in such a hurry before. Those little daily graces that come into our lives and if we are speeding through we just might miss. Like listening to the the sweet sounds of the birds singing in the trees outside my window, hearing a symphony that is in the gentle rain fall, or the beauty of the sunrise as it dances across my bedroom in the morning and caresses my face telling me it is time to wake up, smile and give thanks for another day of life.

Do you have any visible signs of RA?

A couple of my knuckles have started to shift. I remember waking up one morning and my hands were stiff and swollen. I could see that the third finger on both hands was swollen looked different. I remember thinking this is it; my hands are going to be the first joints to be affected by this disease. RA has affected my gait. I don’t walk as I used too. My walk is off center.

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

My faith is the most important thing that helps me cope with my disease. It is a source of strength for me and if I didn’t have my faith to lean on I think I would be in worse shape than I am.

My family, my faith family, and my support groups are also very important to me. They are great sources of strength and support. I couldn’t make through my RA journey with out any of them.

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

Methotrexate, Humira, Folic Acid and Oxicontin.

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

When I am not in a flare I love to cook and bake. Being in the kitchen brings me such joy and pleasure. I love the wonderful smells that waft through the house and fill every nook and cranny. Reminds me of my childhood times in the kitchen with my mother and grandmother. I also love to sew and quilt, but have had to scale back since the fine motor it requires makes my hands ache after a short while. I love to spend time with my sons and our 2 dogs, Bandit and Chembow.

Frank B.

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Frank B.

Name?

Frank B.

Age?

49

Location?

Knoxville, Tennessee, United States.

How long have you lived with RA?

I was diagnosed in early 2003, I was working around my house and my ankles became very sore. After a few weeks the pain was still quite evident and now was in my knees. I went to my Dr. and described my symptoms and he sent me to an RA specialist where I was tested and notified that I had RA.

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

I would say to get as much information as possible about RA. The Internet has wealth of information that will help you navigate your way through this disease. Don’t be afraid to ask your doctor any questions you have about your condition. Early on I had all sorts of fears about what my future held, but with more knowledge I am more confident about what I can and can’t do.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

Not sure how to answer that.

Do you have any visible signs of RA?

Not permanently, I had some weird nodules that showed up on my elbows, but they are gone now.

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

My favorite coping strategies has always been my families support. It has not always been easy, but through it all they have been awesome.

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

Currently I am using Enbrel, I have been on Celebrex, Methrotrexate, Prednisone, and some others early on that I can’t remember. My mom said my grandfather had RA and he used a salve made from devils club root in SE Alaska.

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

I am an artist that works in various mediums, from painting, carving, stained glass. Currently I am into repousse and chasing of copper, which requires many hours in position that really put a strain on my back and shoulders, fingers and forearms. Since starting Enbrel I have been able to work freely and with minimal breaks. For me it is like I do not even have RA.