Jordan Lynne

Jordan Lynne

RA Guy Real Profiles of RA 16 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Lynne-Jordan
Photos © Jordan Lynne

Name?

Jordan Lynne

Age?

9

Location?

Los Angeles, California, United States

How long have you lived with RA?

7 years and I have uveitis.

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

Don’t think that it stops you from doing things you like. There are ways to treat your JRA. Do all the things you like but if it hurts you may want to stop and rest.

Do you use any mobility aids?

Daddy carries me if I hurt.

How has living with RA helped to improve your life?

I don’t give up.

Do you have any visible signs of RA?

I have 2 scars on my right knee from surgery when I was 2 and my knees are bigger then they should be because of the JRA.

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

I cuddle up with my parents in bed and watch movies. I have a little stuffed dog, Peter, that was given to me as I was coming out of surgery when I was 2 and in the process of being diagnosed. I need Peter and the blanket my mom made me when I’m having a bad day.

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

Remicade, CellCelt, naproxen, pred drops too when my eyes are flaring and physical therapy.

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

When I’m sad I always pick myself back up. I try not to keep myself sad about having JRA.

Jordan blogs at Warrior for JRA and also has her multiple videos available on YouTube.

Marissa Hormell

Marissa Hormell

RA Guy Real Profiles of RA 5 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Hormell-Marissa
Photos © Marissa Hormell

Name?

Marissa Mullins Hormell

Age?

16

Location?

Kennerdell, Pennsylvania, United States

How long have you lived with RA?

14 years. I was diagnosed at 2 with JRA.

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

Don’t be afraid to ask your doctor/rheumatologist questions. Find local or online support groups that help with dealing with pain/depression. Check sites like arthritis.org or, of course, rheumatoidarthritisguy.com for facts and other people who have RA. No one understands better than they do! RA tests your courage and emotional strength in many ways, so don’t give up on yourself. This isn’t the end of a long wonderful life and you are the strongest you can be at this time.

Do you use any mobility aids?

No aids yet!

How has living with RA helped to improve your life?

Living with RA has helped me realize that I CAN do things I’ve always wanted to do. I still swim, hang out with friends, and go on vacation. Also, some days I feel like I am stronger because I can cope with my arthritis in a mature way. Some people wouldn’t think that RA can help you in a positive way, but it really can.

Do you have any visible signs of RA?

I have purple blotches on my legs and dark bags under my eyes. I also occasionally have visible swelling of my knees and fingers.

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

When it comes to feelings and mood and my RA, it’s like a rollercoaster. Some days I feel great about myself but other days I feel as if nothing is going right and I am always in pain. The #1 thing that always can help me through a depression stage is music. Usually I’ll listen to the kind of music to fit my mood. Like if I am angry, I’ll listen to loud rock music. Or, if I’m sad or depressed about my pain, I’ll listen to inspirational music. I remember when I was going through a tough time a while ago with school and everything was so messed up it seemed, and the only song I listened to for 3 days straight was “No Boundaries” by Kris Allen. It really helped me realize that I could make it through the bad days. Music really helps me cope with a lot of things, not just my arthritis pain. I’m glad to have such an awesome therapy method.

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

Right now for my RA I am not on any medications. I was put on Methotrexate and Folic Acid a couple of years ago for my RA. I was doing exceptionally well and my arthritis was also doing great, so I was taken off. Now though, since the pain has returned, we concluded that I was just in a remission. As for my pain, I have another condition called RND, which has to do with my nerves. Most of the pain is in my nerves and muscles now, which I only take OTC drugs for that pain.

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

I am a huge animal lover. I have 3 cats, a bunny, and my grandparents have the cutest dog. All of my life I have been around animals and have always had a knack for getting them to trust me. Hopefully someday I can have a job that deals with animals along with my dream of becoming a journalist. I can also be found on Facebook.

Joseph Bayliss

Joseph Bayliss

RA Guy Real Profiles of RA 11 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Bayliss-Joseph
Photos © Joseph Bayliss

Name?

Joseph Bayliss

Age?

22

Location?

Dudley, United Kingdom

How long have you lived with RA?

While I wasn’t diagnosed until I was 10 years old, I’d had severe aches and pains in my legs since I can remember. Though we always put it down to ‘growing pains’. It simply never occurred to me to ask why I was the only boy who was in immense pain after a kick around or when we played soldiers in the school playground. It wasn’t until my right knee swelled up badly one day that I and my family started to worry. Unfortunately it took nearly a full year going from hospital to hospital until I was diagnosed with juvenile rheumatoid arthritis at the Birmingham Childrens Hospital. I have found it difficult to live with it ever since.

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

Seek out fellow sufferers! The internet is wonderful for seeking out help and advice from people in the same situation as you, with the exact same feelings and physical challenges. Learn to understand the mental challenges that come along with any form of chronic condition, especially when chronic pain is involved. Find a good rheumatologist! Do your research, thanks to great sites such as RA Guy’s site, trustworthy information is just a click or two away.

Do you use any mobility aids?

I use a walking stick(s) quite often due to both pain and an inability to walk when the condition is at it’s worse. I sometimes use knee pads to both protect my knees and calm things down, they actually work surprisingly well. Had a stair railing fitted to help me with getting up and down stairs.

How has living with RA helped to improve your life?

Hmm, that’s a difficult one. I’d say I’m more understanding of the limitations and challenges disabled people suffer from and care a great deal about them. I appreciate a comfortable seat more then most, same can be said for baths.

Do you have any visible signs of RA?

Thankfully I currently have little serious disfigurement and the only signs of surgery are two small holes in my knees where cameras were used to inspect inside the joint.

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

I struggle to live with this condition daily, so I’m certainly no expert on coping with it to well. But I’d recommend writing down your feelings daily to help you mentally get a grip of matters and will help you understand your pain and the best ways to cope with it. Become part of a social environment where you can discuss RA, this can be locally or of course on the web, there are many great sites out there but it’s good to interact with people who simply understand. A weird one, but I’m a fan of self-hypnosis and it might be worth checking out.

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

Currently take Celebrex Celecoxib. Been doing the usual physical exercises to help the joints and muscles. Take painkillers to help with the immense pain, not sure where I’d be without them.

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

Yes, I’ve struggled with handling RA both physically and mentally. I’ve had spells of depression and even other related symptoms such as panic attacks and anger attacks. I think it’s important that those newly diagnosed are told about the mental challenges that RA can bring let alone the physical troubles. RA is as confusing to those who suffer from it as those who do not, so helping people understand this condition should always be of importance to anyone who is in such a situation. Don’t be afraid to ask for help, especially when it comes to doctors and specialist who will more then happily ignore you if you don’t speak up for yourself. Oh and stay strong!

Deb

Deb

RA Guy Real Profiles of RA 8 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Deb
Photos © Deb

Name?
Deb aka murphthesurf

Age?
54

Location?
Wilmington, North Carolina, United States

How long have you lived with RA?
13 years.

What advice would you give to someone who has just been diagnosed with RA?
First, find the best doctor you can! Find a doctor that will not judge how you feel based on your test results or the number of swollen joints they can count (or they can’t count) but one that will listen to what you have to say. This relationship, the patient doctor relationship will become one of the most important relationships on your new journey with RA. You want a doctor that is compassionate, knowledgeable and one that is available when you need them. Having a rheumatologist that truly listens when you are trying to explain how you are functioning or not with your RA is paramount. Together you can find a way down this new path, together you can make this journey much easier and together you can learn to manage your RA. You need a team player, a doctor that will go to bat for you if the need arises and one that also is willing to treat the possible pain you may experience with RA. A lot of doctors fail to treat the pain of RA. Find a doctor that will treat all aspects with pain management included. And most of all, RA can at times bring us on an emotional rollercoaster. That journey can be very turbulent at times. Never, ever forget that you can get help with this emotional roller coaster as well. RA can be an all encompassing disease that includes our emotional well being. Please reach out and get that help if you need it too!

Second, find a support group for yourself. Your support group can be a local one that meets weekly or if that isn’t available, find one online. It is very difficult for people that do not have RA to understand all the challenges that come with this systemic disease. Surround yourself with as much RA support as you need to walk this journey. We have all stumbled at one time or another and having others there to lift us up, to give us a helping hand, to give us hope is what makes living with RA easier. Chances are this “group” will become like a second family to you over time.

Third, forgive yourself. When I was first diagnosed with RA I always questioned why. You did nothing wrong. I chalk getting RA up to the luck of the draw. It is what it is. I just now have to figure out what to do manage it and how to keep doing those things I love to do. Try not to beat yourself up emotionally on the what if’s, try not to push yourself physically and do take care of yourself the best you possibly can. Eat well, sleep as you should and find those things that make you smile. For me, laughter truly is the best medicine and I believe that if we can find the humor in things, coping will be easier.

Do you use any mobility aids?
I use wrist splints a lot and find canes or walkers are pretty much too painful with my wrists. I have bought many of the RA friendly cooking tools out there and I am continually trying to modify everything I do to make it simpler for my RA body. I don’t own a wheelchair yet but on those bad flare days, one can find me driving the grocery store’s electric scooter. I suspect that eventually I may need a scooter and when and if that day comes…I have my happy scooter stickers ready! My motto is to keep going.

How has living with RA helped to improve your life?
RA has taken a lot from me physically but I have grown a lot emotionally from this disease. I appreciate the simple things in life and have taught myself to find new ways to do the old things I love to do and still refuse to give up. My process is akin to a forest fire. Once the fire has come and gone, leaving the ground damaged, a rebirth starts. The gentle rain comes, the sun shines once again and the seeds start to germinate again. My forest is now filled with beautiful flora and I tend to it carefully.

Do you have any visible signs of RA?
RA is pretty much everywhere. I have RA in my hands, wrists, elbows, neck, ribcage, hips, knees, ankles and let me not forget…the footsies too. It is quite visible in my fingers and wrists and one arm is shorter then the other. Although my hips and knees do have RA damage, so far they have managed to stay even unlike my arms.

Can you please describe some of your favorite coping strategies for living with RA?
I love to laugh. I really believe that laughter is the best medicine and I try to surround myself with positive people and positive things including uplifting people, music and comedies. I also find that when I am feeling a little bit better that doing creative things helps me personally. I love to write, take pictures, garden (well more like my hubby does the gardening while I direct), and I have two fur babies. I also have Fridates (we go out for desserts on Fridays) with my daughter if I am up for it. I started a blog recently entitled abcsofra.blogspot.com in the hopes of sharing my RA experiences. I also love to read other bloggers stories and I frequent several online RA communities regularly.

Can you please describe your current medical (traditional and alternative) treatments?
I have done the following medications: plaquenil, methotrexate, azulfidine, prednisone, Enbrel, Humira, Mobic, Celebrex, Ultram and multiple narcotic pain medications. Unfortunately I have had many allergic reactions over the years. I am currently taking low dose prednisone and ultram for my ra. I am also taking the following: Evening Primrose oil, Omega 3 fish oils, Chicken Cartelidge II, Vitamin D3, Calcium, Multiple Vitamin and Flaxseed Oil. We don’t eat red meat and I also try to eat an anti-inflammatory diet as much as possible. Fridates excluded.

Is there anything else about yourself that you would like to share?
There is a quote I try to live by: “Keep your heart open to dreams. For as long as there’s a dream, there is hope, and as long as there is hope, there is joy in living.” Anonymous

I have decided to write a bucket list to keep my heart open to my dreams. The first three items are done: visit Disney World, do a blog and write a children’s book. I am now trying to figure out how to accomplish the fourth one…stand at the top of the Eiffel Tower.

Nan Hart

Nan Hart

RA Guy Real Profiles of RA 4 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Hart-Nan
Photos © Nan Hart

Name?
Nan Hart

Age?
57

Location?
Rutland, Vermont, United States

How long have you lived with RA?
15 years diagnosed.

What advice would you give to someone who has just been diagnosed with RA?
First of all, be glad that the pain and suffering now has been diagnosed as most of us with RA wait a long time to have it diagnosed and that is tough enough!

Secondly, understand that there are treatments and strategies for managing RA that will allow you to live a joyful, productive life if you commit to what needs to happen and utilize all the tools available.

Third, seek support and comfort and guidance from your “team” which should include your medical folks, family and friends and any support or online RA research and support groups you can find!

Do you use any mobility aids?
Just the standard neoprene braces now and then.

How has living with RA helped to improve your life?
As cliche as it sounds, I have a much deeper appreciation for EVERYTHING from nature to my family to the simplest pleasures in life.

Do you have any visible signs of RA?
I have some nodules, but not many and my wrists are a bit mishappen….otherwise very little.

Can you please describe some of your favorite coping strategies for living with RA?
A good cry now and then is really helpful even though I try sometimes to bury it. I have found that “letting go ” (in an appropriate place -not the grocery store for instance ;-)) provides a huge emotional release. I also really love guided imagery which allows me to fully relax and meditate. Very useful.

Can you please describe your current medical (traditional and alternative) treatments?
Medication wise I am on methotrexate, low dose medrol, celebrex, remicade (but switching to Simponi next month as the remicade is failing).

Is there anything else about yourself that you would like to share?
Throughout this journey I have found great support and relief in continuing my work as the Director of three elder service programs where I have had the amazingly good fortune to develop programming for our community. I also serve on a number of boards, including our New England Regional Arthritis Foundation Advisory Council. I have found that participating in other organizations is very rewarding. I also volunteer at the Court Diversion program which works with first time offenders to find an alternative to incarceration.

I love to read, I an avid swimmer, I love Zumba. Most of all I love spending time with my family – my husband of 34 years, my three sons, my brother and my Dad and my friends and co-workers who are a priceless source of comfort, love and support.

I just started an RA Support Group for our region which has not had one for over 20 years, so I am excited for that to take off. We have had two meetings and the numbers are growing! We are on Facebook – the link is http://www.facebook.com/pages/Rheumatoid-Arthritis-Support-Group-Rutland-Region/202315596455903.

Finally, I have blog I started a couple of months ago and I would love folks to check it out and let me know their thoughts on the topic and/or suggestions to make it better. the link is http://livingwithra-nan.blogspot.com/.