Nicole

Nicole

RA Guy Real Profiles of RA 3 Comments

Real-Profile-Nicole

Photos © Nicole

Name?

Nicole

Age?

31

Location?

Toronto, Canada

How long have you lived with RA?

I was diagnosed at 29, but like many people I think I had symptoms that I didn’t recognize to be RA signs from my early 20s. When I was younger I used to wake up feeling like I was walking on burning glass. Turns out, that wasn’t normal!

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

I have a lot of suggestions, and it’s not because I think I know everything it’s because I really wish that I would have found this blog when I was first diagnosed to learn from all of the others… so I’m just doing my part. Here are a few things that I can think of:

A good attitude will help with pain and emotional stress… BUT allow yourself to grieve too, because pretending like it’s not real is not good for anyone. I still have some ugly cries once in a while, and right after, I re-group and continue to drive on.

Educate yourself. Learn about everything you possibly can, you must be your own advocate.

Communicate: A lot of people don’t understand what you are going through. Figuring out the right way to share what RA is all about without throwing a pity party of downplaying its seriousness will help others try to understand. This will remove some isolation (sorry, this is common) that you may experience living with this disease. You’ll find that friends and family who understand make a world of difference! The ones that don’t might not be the friends you think they were…

Be forgiving: It’s ok to say no, and you really should rest when you’re tired. Things will be different, but different will not feel bad after time. It’s likely hard for you to understand that now, but you will…

Focus on the day. You can’t get caught up on how you felt yesterday or what tomorrow will be like. RA is such an unpredictable little monster. I used to put too much energy thinking I was finding trends in my health, but that used to just let me down when I was wrong.

Don’t let it change who you are. It doesn’t have to.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I am really intentional with my time. This helps me focus on what matters most to me, because I don’t have unlimited energy. I also never know what the RA monster will deliver for me tomorrow, so time is just so valuable. It’s funny though, my intentionality might simply be choosing to do yoga, take the time to curl my hair (what a treat), and going for coffee with my husband. That could be it for the day… but if I prepare myself for that mentally… then I’m alright.

I don’t take anything for granted, and simple wins make me really happy. A nice walk on a summer day feels different that it did before.

I also have a lot of patience for others, even more than before, as similar to an invisible illness like RA… you just never know what someone else is going through.

Most importantly, I have learned who the most important people in my life are. They are the ones that want to understand, who haven’t given up on me, even after a million last minute cancelations… I’m so lucky to be loved the way I am.

Do you have any visible signs of RA?

Most people say they’d never know which is meant with wonderful intent. Sometimes I’m stiff, sometimes I can’t get up at all, and sometimes the fatigue across my face is so obvious it’s funny. I have actually had to take a nap under a desk at my office before.

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

Bikram Yoga has been a game changer. It’s a time dedicated where I know I’m positively contributing to disease. When I’m doing Bikram, I seem to forget everything else, and there is something so incredibly relieving about that. I leave the class feeling so balanced and normal. It’s like a little mental vacation.

I talk to my husband and friends. I’m lucky to have people who listen to me. It helps, a lot. I could probably talk more about it.

I really wish I knew someone in Toronto going through the same thing.

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

I take Methotrexate weekly injections which is better than the tablets (for me). I’m on Plaquenil which gives me terrible side effects, but I’m being put on Enbrel so hoping I can come off that one. I take Voltaren, Tecta and Folic Acid as well. I have found that the anti-inflammatory diet has been amazing for me. I am actually nervous to think about what things would be like if I wasn’t on this diet. Worth a shot if you are open to trying new things!

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

I suppose there is a lot to know about me! I am into writing and playing music, yoga, reading, walking my dogs, finding good coffee (sort of my bad exception to the anti-inflam diet), and LOVE the days when I get to pretend that I don’t have RA. It’s happened a couple times and it’s awesome. I am still learning, and it’s a struggle. I would love to find others close by (toronto) to connect with. Here’s my Facebook if you want to connect: https://www.facebook.com/nicole.mcphail.1

Shana

Shana

RA Guy Real Profiles of RA Leave a Comment

Photos © Shana

Name?

Shana

Age?

45

Location?

Outside Butte, Montana, United States

How long have you lived with RA?

Almost two years diagnosed.

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

Educate yourself about the disease. Traditional treatments, homeopathic medicine, self care, everything regarding this disease so you become a better advocate for yourself.

Do you use any mobility aids?

Yes, my husband. No, seriously! He helps me when I am having difficulty walking, opening a jar, cooking, showering, dressing…you name it.

How has living with RA helped to improve your life?

My first reaction was NOT AT ALL, but after some thought on the matter, I realize it has forced me to slow down and enjoy the things which actually matter in our life. Togetherness, a warm home, family, a fire on a cold day, my baby girls, my wonderful husband, and that first drink of coffee in the morning (no, really lol!).

Do you have any visible signs of RA?

Swelling in the fingers. I can’t make a fist some days. Feet and toe swelling. A limp at times.

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

A funny movie, quiet times, a good book, a walk when I’m able, a warm bath or shower, cuddles with my girls, and of course I sometimes cry.

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

I take Enbrel injections weekly. Prednisone 5mg a couple times a week. Multi vitamin, vit D, Iron, Cinnamon, Raw Honey, Turmeric Root, Medical Marijuana (CBD edibles). I started with prednisone, methotrexate, then added Humira. Humira was stopped and Enbrel started. Then methotrexate stopped and Arava started. Arava stopped. I feel like a guinea pig sometimes!!

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

I used to work as a Registered Nurse in various Emergency Departments (I was a traveler) doing Pediatric/Adult Traumas and Codes. I am the caregiver of our 6 1/2 year old daughter who has TRAPS, a Genetic Auto Inflammatory disease. Her health and well-being are number one, before my own, but I do recognize that I will not be able to care for her unless I take care of myself. It is a struggle. Before I got this disease, I was very active in the outdoors, hiking, hunting (archery and rifle), fishing (fly and spin). Trying to get back to it. I have a blog at irishdoe.simplesite.com.

Lorelei

Lorelei Nettles

RA Guy Real Profiles of RA Leave a Comment

Real-Profile-Lorelei-Nettles

Photos © Lorelei Nettles

Name?

Lorelei Nettles

Age?

55

Location?

Mesa, Arizona, United States

How long have you lived with RA?

I was just diagnosed March 2015, but once diagnosed realized it had been longer (maybe up to a year or more before). I started the process by becoming almost completely incapacitated. I couldn’t roll over in bed, I could barely walk or lift my arms, etc. I have it in every joint except my hips. Once diagnosed, I realized my numerous previous exercise injuries were due to the disease.

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

Research! I am still working on that, but have learned so much already. The more you know, the better you can address the needs you have.

Do you use any mobility aids?

I do use wrist wraps and a knee brace as needed. I have been considering a toilet riser and cane for when I flare real bad.

How has living with RA helped to improve your life?

I think I am more compassionate of other people’s pain. It has also made me focus more on diet and creating a better lifestyle.

Do you have any visible signs of RA?

I have some nodules on toes and have been losing flexibility in my wrists.

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

I have fought depression. It can be frustrating to lose control of your body, but I have looked at those who are much worse off than myself and how happy they are with their situation and realized I can cope with what I have. I also have developed a “never give up” attitude. Most of all, I rely on God. I pray and know He won’t give me more than I can handle.

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

I am currently on 8 Methotrexate a week and just ending ,my second round of a 30 day 5mg Prednisone regiment. They want me to take Humira, but the side affects terrify me. I also get a lot of pressure not to take the drugs from friends and family. The RA has greatly affected my current knee issue with osteo arthritis, so I will have to get the knee replaced. After that I will probably relent and take the Humira as I have trouble dealing with the wrist and shoulder pain most of all. I also take 800mg of Ibuprofen as needed for pain, although I try to limit it. I have cut down on red meat and my diet leans heavier on veggies, rice and fruits.

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

I am a writer. That means I not only type, but love to take notes at church and write things as I think of them. I have realized hand writing has become a big problem. An hour of writing (or less) can cause me to have a week without the use of my hand. As you can imagine, that is a great problem for the dominant hand. I retain a positive attitude though and try to laugh most of it off and do what I can to be a happy family member and friend.

Christy

Christy

RA Guy Real Profiles of RA 1 Comment

Real-Profile-Christy

Photos © Christy

Name?

Christy

Age?

29

Location?

Colorado, United States

How long have you lived with RA?

I received the diagnosis in March 2012, but I think I’d been living with the symptoms for at least a couple years before that. It’s amazing what you can ignore when there’s not a name for it!

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

Limit your time researching stuff online – it can take over your life and send you into a panic! That being said, I’ve found some RA blogs – Rheumatoid Arthritis Guy included! – very helpful, inspirational and supportive. Just be sure to choose ones that help you to be positive. Also, stay strong and work with your doctors. Don’t be afraid to delve into alternative therapies. As my rheumatologist has told me, I promise you, it will get better than this.

Do you use any mobility aids?

Not really. I have a pretty handy kitchen grip that help with opening jars.

How has living with RA helped to improve your life?

This question is inspiring because when I first saw it, my mind drew a blank – there are so many reasons it hasn’t! But then, I was flooded with the reality that this disease has brought a lot of positives with it. This may seem strange, but I am a much healthier person now that I am living with RA. My diet has improved significantly and I make much more of an effort to limit stress and rest when I need to. I drink less too (thanks methotrexate…).

Another important improvement is that I’m more appreciative and grateful than I was pre-RA. I am also way kinder to myself. I don’t beat myself up over an unproductive day or missed workout as much as I used to. There are so many things to be grateful for: family, friends, nature, good movies, cupcakes, whatever makes you happy! Why waste time comparing yourself to others or being so hard on yourself? Finally, I feel like I’m more empathetic to the struggles of other people.

Do you have any visible signs of RA?

I got steroid shots in my wrist because of several rheumatoid nodules, so the skin there is a bit discolored. My hands and feet can be red and swollen.

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

I still like to set big goals because they make me feel less limited. With my rheumatologist’s blessing, I’m keeping my pre-diagnosis goal of running a marathon before my 30th birthday. Hopefully my RA will cooperate, but regardless, the goal and the vision of running through the finish line makes me feel strong and hopeful.

On bad days, a good movie, comfy clothes, and supportive company go a really long way.

I cope by reading other people’s RA blogs and books; It makes me feel less alone knowing other people are struggling with the same disease I am. I write my own blog to get my emotions out without burdening my friends and family (and hopefully educating/supporting others in the process!) — myradlife.wordpress.com.

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

Each week I’m doing 8 methotrexate and 1 self injection of Enbrel. I’ve also adjusted my diet – no gluten, limited dairy, caffeine and refined sugar, lots of anti-inflammatory foods and supplements including turmeric and fish oil. I am playing with acupuncture – verdict’s still out though.

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

I just want to say that the online RA community has been so inspiring to me! I want to thank all of you for being so open and supportive.

FinishLine

Update: P.S. I wanted to mention that I did indeed cross that marathon finish line before my 30th birthday. It was hard, but felt so good to do. Despite more RA pains lately, I’m beginning training for my second marathon now.

Alexa

Alexa

RA Guy Real Profiles of RA 3 Comments

Real Profile Alexa

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.