Moselle Irr

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Moselle Irr

Name?

Moselle Irr

Age?

26

Location?

Fredericksburg, Virginia, United States

How long have you lived with RA?

I was diagnosed at 21. I have a particularly aggressive case, so I literally went from feeling absolutely normal, working two jobs, being active and independent to, in the space of a few months, being unable to even get out of bed on my own.

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

Breathe. And prepare yourself. I feel like there are two levels of acceptance, accepting that you’re sick and accepting that there is no going back. The second one is much harder to achieve, and I still struggle with that. For a long time I unintentionally kept thinking in terms of “sticking it out for a while” or “Well I have to give this up now but eventually it’ll be back to normal”. It took me a few years after I stopped using high heels to be able to give them away. I kept thinking that eventually I’d want them back. Informing yourself, finding others who have been there and can help you, and being honest with yourself and others is the best way to learn to accept what you have. Once you really accept your situation then you can start learning to make the best of it.

Do you use any mobility aids?

I have a cane I use when my feet get really bad, but it doesn’t help much as my hands, wrists and arms usually hurt just as much, so leaning on a cane is pretty pointless for me. I have a walker which helps a bit more, but hate using just as much, and when the flares are very extreme I rent wheelchairs if I need to. I do not, as of right now, need to buy one. Yet.

How has living with RA helped to improve your life?

That’s a really good question. I don’t normally think of RA as something that has improved my life. Quite the opposite. I spent a lot of time thinking about this one. My RA worked really fast and aggressively so I am stuck in bed a LOT. Making plans for the future is always very tricky, and the amount of cancelled plans, and events and occasions I’ve missed are too many to count. Because of that I have learned to really, really appreciate the good days. A day in the park with my family is a treasured memory, pulling off a birthday party for my son a major triumph. I absolutely love the good days, and doubt I would appreciate them nearly as much if they were easy, or common. RA has taught me to never take anything for granted, and I can appreciate that.

Do you have any visible signs of RA?

My feet are permanently swollen and have nodules, my hands are starting to loose their shape and are knobbly. My arms do not open anymore, and I permanently limp. I also have gained a lot of weight because of the steroids, and don’t think I will ever go back to being my ideal size anymore.

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

My son is my absolute favorite coping strategy. I was diagnosed while pregnant, and I believe the cosmos must have done that intentionally. I received the best news of my life, and the worst, within the space of a few months. On those days where the pain is beyond what I think I can cope with, and I refuse to get out of bed, it’s my 5 year old who achieves the impossible and gets me out of bed. He reminds me what I am living for and what I am fighting for. My husband is the strength I no longer have. He’s very good at determining whether I need a shoulder to cry on or a swift kick in the butt to snap me out of my depression. He fights with me and I know I would not make it without him. My stepson is the kindest, most thoughtful child I know. I once told him that heat helps me feel better, and now on every single bad day, when he’s with us, I always wake up to find a cup of tea for me, so that the heat from the cup makes my hands feel better. I’d be nowhere without the support circle my little family is.

I know those of us who have RA or chronic pain are told to tough it out a lot. And we do. We tough it out every single day, forcing ourselves up in the morning, getting dressed even if it’s a nightmare, setting one foot in front of the other all day, every day. I know there are moments that creep up in which we just want to scream. I believe in screaming. In crying and telling the world it’s not fair. In being vulnerable and not superhuman every once in a while. And then, once it’s all been let out, in getting up and setting that foot in front of the other once again. I allow myself those days in which I never even get out of my nightgown, as long as every other day I get up, get dressed, take as much control of the day as I can, then I don’t feel guilty for those days in which I let myself just relax and the dishes pile up in the sink.

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

I take steroids (as rarely as I possibly can as I truly hate them), Methotrexate and Orencia. I am on very high dosages of pain medication, and take anti-inflammatories. Those rotate as they do a number on my stomach. My medications change often as nothing I have tried so far has worked.

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

Before getting sick I was very much of an optimist, and I identified myself as a tough person. I had a hard life and a very unusual one. I ran away from home at 15 and since then I took care of myself. I’m Italian, have lived in Croatia 3 years and then moved to the US. If I wanted to cross the world I’d just get up and do it. I very much prided myself in being tough, independent and needing absolutely no one. Then my world was thrown upside down. I can no longer work or drive. I will never be able to live on my own again. My pride took a humongous blow the first time I needed help to the bathroom. In the six years I’ve been sick I’ve had to re-learn everything about myself. I still very much struggle with depression. Becoming active with an RA community (via Facebook and through blogs) has helped tremendously. It has taught me first and foremost that I am not alone. Others suffer just as much, and worse. And they understand. And I can whine about having to cut all my hair off because I can’t brush it and find support, or console a mother who’s child has been diagnosed and forget for a while about my own pitiful complaints. It has been a lifesaver for me. I am thankful to each of you who have turned your struggle with RA into a means to reach others. I’m indebted to you and when I grow up I want to be just like you.

Kate

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Kate

Name?

Kate

Age?

28

Location?

London, England

How long have you lived with RA?

Probably since I was about 20, but I have never had any positive blood markers so it took about 6 years and two operations before I was properly diagnosed (through ultrasound and MRI scanning of my joints).

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

Don’t panic! Also, do whatever you can so you can accept it. It cannot take over your life unless you let it – see it as part of who you are, like having brown hair or being short, and you’ll find it much easier to manage it.

I’m also a big advocate for reading up on your condition. Don’t scare yourself by reading every whacko online article out there but use credible information so you understand the treatment options and can explain about your condition to others.

Do you use any mobility aids?

I use splints for my wrists and a crutch occasionally when my hip plays up but I try to do without.

How has living with RA helped to improve your life?

It’s made me braver. Until recently I was working in a great high-profile government job but struggling to manage that and the arthritis. I was working on so many interesting health issues but at the same time completely failing to look after my own health and suffering flare after flare.

I realised I had to stop fighting against the arthritis and find a career that better fitted by life. Now I’m training as a clinical nutritionist and doing freelance work. I also write a blog about cooking with arthritis and have never been more fulfilled. If it hadn’t been for the illness, I think I would have felt stuck on the treadmill and maybe never discovered another career.

Do you have any visible signs of RA?

I move a little stiffly sometimes but for the most part my arthritis isn’t really visible. Some little keyhole scars on my right hip from surgery to reshape the joint and remove the bursa and I’m about to have some little holes on both sides of my jaw from an operation to sort that out so I can eat pizza and cookies again! Yay!

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

My husband – seriously he is constantly brilliant and has been incredibly supportive from when I was just a whining girlfriend with random joint pains through to helping me get a proper diagnosis and treatment. He doesn’t ‘molly-coddle’ me (sorry but it’s a brilliant English expression) but he reminds me not to overdo it or try to fight it when I’m flaring.

I’ve learnt it’s better to be honest about how you are feeling with family and friends (little and often rather than a big wave of emotion).

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

Humira, sulfasalzine and methotrexate – plus a good handful of painkillers.

I find taking plenty of regular exercise and a healthy diet helps too.

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

I’d love to share my website www.cookingwitharthur.com with everyone. It’s full of healthy, tasty recipes that are easy to cook with arthritis but I’d really value feedback and comments from all those brilliant RA’ers out there. I want it to be a helpful resource so never again does someone with a flare have to live off breakfast cereal (please tell me other people do that too…).

Rebecca

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Rebecca

Name?

Rebecca

Age?

17

Location?

Brockville, Ontario, Canada

How long have you lived with RA?

Developed at around age 8 or 9. My first diagnosis was at age 9, second diagnosis following biopsy at 16… the doctor that gave me the first diagnosis lost his licence in an unrelated incident and so, when the swelling temporarily went down, the diagnosis was all but forgotten about and ignored for years.

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

Firstly, be persistent! With my diagnostic struggles, countless times having difficulty in school because even teachers couldn’t understand my limitations, struggling to get doctors to take me seriously… I have learned that nobody understands your body, limitations, needs, and abilities better than you. You need to be persistent in this, whether a doctor saying, “I don’t feel the need to run more tests” when you know you still need more answers and need to make them realize this, or saying “no” when your phys ed teacher tries to get you to do physical activity you know will harm you. You are in the drivers seat with your medical life, and you need to take responsibility for it. Never back down if you feel your health depends on it, and don’t accept answers that contradict what you know has to do with your body, even if it’s a doctor!

Do you use any mobility aids?

I am usually able to hobble around well enough on my own, but if not, I’ve got my crutches, or my mom and boyfriend to lean on.

How has living with RA helped to improve your life?

I’ve learned to never take anything, especially your health, for granted, because nothing is a given in life, even if it should be. With RA, also, I have found that a lot of things seem easier to deal with, and therefore give me a lot less stress, just because they seem insignificant in comparison to the battle that is sometimes a simple daily task. It’s a blessing in disguise, really, this ability to not give a damn about issues and therefore tackle them easier because I have this, “RA is worse, I’m getting through. This…? I could get through this while sitting on the toilet!”

Do you have any visible signs of RA?

I have scars from a biopsy on my right knee, as well as stretch marks on it from a specific flareup I had a few years back. They’re finally starting to fade! My right foot points inwards naturally because of deformation of the right knee, and my toes and fingers are starting to show subtle deformities. I usually have inflammation in my knees, fingers, wrists, jaw, and sometimes other joints, and my finger and toe nails are yellowing from my methotrexate. My hair is starting to thin from slight hair loss from mtx, but the only people who notice are those that know me very well.

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

When my dog was still alive (she passed earlier this year), I would cuddle her. She could always sense when I was in pain, and would even lick the joints that were bothering me the most. It always comforted me. I always felt like she somehow understood. Now, I run an RA blog. It helps, knowing I’ve made many people more aware of my condition. The feeling that I have done something good gives me a lot of comfort. Other than that, I will sing as loud as I can (unless my jaw hurts too much), watch movies, hang out, vent to my boyfriend, whatever.

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

I have been given many steroid injections and oral steroids, but none worked. Now I inject methotrexate weekly, though I plan on coming off of it because it isn’t helping and the side effects are too overwhelming for me to cope with. I smoke medicinal cannabis to help with the pain and to help eat when my jaw is acting up, and I do yoga with my friend, Becky, to try and keep a little active.

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

RA is a disease that you need to take control with. I find doing things that benefit the cause helps. I, personally, blog (if you are interested, feel free to check out my RA blog www.arthritisy.tumblr.com or my RA-anecdotes blog www.those-ra-moments.tumblr.com) to help spread awareness for the disease and get my feelings about it out. I find it helps, and every time I see, “I never knew RA was like that! Thank you for informing me” or “I have started donating to an arthritis charity in my area after seeing your blog,” it makes me feel so warm and good inside!

Amanda Gibson

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Amanda Gibson

Name?

Amanda Gibson

Age?

25

Location?

Lauderdale, Minnesota, United States

How long have you lived with RA?

I was diagnosed 15 years ago, but the onset of symptoms was much younger. It could have been as early as age 2.

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

It can seem overwhelming, and you might want to focus on the things you’re “losing” from your life. Try not to do that! Instead, take delight in the things you CAN do. Any day that you can tie your shoes or cook your food or open a soda bottle are days that you should feel like a superhero!

Do you use any mobility aids?

I don’t have any currently, but I’ve been looking into getting a cane to help with flare-ups. I’ve been falling down a lot more.

How has living with RA helped to improve your life?

As I said above, I try to take delight in the small things. It keeps me positive and upbeat. It makes me fight harder to keep the freedoms I have.

Do you have any visible signs of RA?

I have swan-necking in my hands, and my feet are hammertoed. I have scars from two different surgeries – a right wrist row carpectomy and a total joint replacement in my jaw.

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

When I feel down, I don’t keep it in. I turn to my friends and loved ones for comfort. They know that it’s hard on me, and they definitely try to keep me from despairing too much.

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

I take Enbrel and Methotrexate, as well as Advil for the pain and stiffness. I try to walk as much as possible. Swimming and massages are great too! I’ve also started float tanking, where you lie in super-salinized water. It feels amazing!

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

I’m a total nerd/geek/whatever you want to call me. If you ever want to talk about anything, find me on Twitter at @geeklygibby. You can also read my blog at http://ramandag.wordpress.com.

Nikki Kelliher

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Nikki Kelliher

Name?

Nikki Kelliher

Age?

21

Location?

Vienna, Virginia, United States

How long have you lived with RA?

12 years. I was diagnosed when I was 9 years old, my parents orginally thought I had lyme disease.

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

Besides the obvious start treatment right away I would say, don’t let the label scare you – you’re still the same you that you were before you were diagnosed with a disease!

Do you use any mobility aids?

No, I do not.

How has living with RA helped to improve your life?

I’ve learned not to take my health for granted, my “good” days are great days. I also believe it’s made me stronger, I’ve gotten so good at dealing with the pain that petty things don’t bother me as they would someone without RA.

Do you have any visible signs of RA?

My lovely fat fingers that can’t wear my favorite rings on most days, I make up for it with crazy nail polishes though. Also, I have a bunion along with the swollen joints in my feet so I limp pretty much ALL the time.

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

I love reading message boards, and of course RA Guy! It’s really helpful to be able to talk with other people who know what I’m going through since unfortunately it’s hard to find with my family and friends. My family and friends are all supportive of me but, as much as they would like to, they just don’t understand.

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

I am currently taking naproxen and methotrexate

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

I absolutely love the outdoors, I am a total beach bum and if I had it my way I’d quit my office job and run a shop on the boardwalk in ocean city. Every weekend I go down to my familys river house and wind down with some boating and fishing, it doesn’t get much better than than that to me. My wonderful boyfriend is extremely supportive of me and patient with me on my really bad days, I am very thankful for him and my parents. Nothing annoys me more than “ohhh, you’re too young to have arthritis!” – I wish people were more educated about RA.