Shana

Shana

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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

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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

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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

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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.

Holly Dennett

Holly Dennett

RA Guy Real Profiles of RA 1 Comment

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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.