Tracy Pierce

Tracy Pierce

Real Profiles of Rheumatoid Arthritis
Photos © Tracy Pierce

Name?

Tracy Pierce

Age?

33

Location?

Elizabethton, Tennessee, United States

How long have you lived with RA?

10+ years.

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

Educate yourself about RA. Work with your doctor to see what is best for you. No one persons treatment and results will be the same so if your meds are not working then you need to let your doctor know. If you have a doctor that doesn’t want to help or change your meds or work with you then find another doctor asap. I made this mistake by sticking with the same rheumatologist even when my treatment was not working at all and was in the worst pain of my life. I was simply shrugged off as overreacting but as soon as I switched RA drs…I got relief because he changed my meds and really listed to me when I told him what hurt and the pain level was simply out of control. Also, I would advise a good support group either in your area or online. A good support system is essential with RA.

Do you use any mobility aids?

Not at the moment. I do own a quad cane, a raised toilet seat, braces/splints for wrists, hands and knees and alot of different heat raps. One heat rap for the neck, small ones, medium sized ones and electric blanket. I also have to wear a mouth guard at night when I sleep because the RA also effects my jaws and without it my jaws KILL me!

How has living with RA helped to improve your life?

I have always considered myself as a nice quiet person that is very compassionate but RA has taken my compassion to another level. It has taught me to not judge a book by its cover that you don’t have to “LOOK SICK” to be sick and in pain. It has definatly made me a much stronger person. My husband tells me I am the strongest person he has ever met. (Although I don’t feel that way most of the time) I just know at the end of the day I can’t give up…I just can’t! It is not an option. My children and husband need me too much to give up and if I give up my disease wins and I lose.

Do you have any visible signs of RA?

I have a ton of rheumatoid nodules on both elbows and at times it makes me self conscious. My big toe on each foot is turned in. Visible swollen fingers. Very restricted jaws (can’t open mouth very much at all and can make it hard and painful to eat.)

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

I am very thankful I have a good support system and my husband is my rock and without him I don’t know what I would do. If I am hurting alot then rest is my friend. I use heat wraps and packs alot and electric blankets. Heat feels so good on aching joints and muscles. Thankfully my husband steps in and takes care of household things and the running so I don’t have to push myself to do it when I am hurting. Honestly if I am hurting alot a good cry always helps me. Keeping it bottled up only makes it worse for me I do try to be strong and not complain it does help when it gets to be all too much to talk about it to someone.

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

I have been on Arava, Methotrexate (pill form and shot), Prednisone, Enbrel, Immuran and Percocets and a TON of Ibuprofen. I am in the process of getting started back with a RA doctor and as of right now I am not on anything but Ibuprofen and percocets till I go back next week to the RA doctor.

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

I have a passion for raising awareness for Rheumatoid Arthritis. It is so missunderstood. Even my family doesn’t really have a clue what it is like and to the degree of pain that one suffers with RA. I have an Ebay store were I sell edible cake toppers/images (cake not included, cake topper only) which is named Cakes 4 Cause to try and raise awareness for Rheumatoid Arthritis. Each order comes with a website link with tips and tricks for your applying your edible cake topper along with alot of RA information and my story and such. One day I really want to write a book on my journey with RA.

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Jody

Jody

Real Profiles of Rheumatoid Arthritis
Photos © Jody

Name?

Jody

Age?

61

Location?

Cascais, Portugal (Europe) Born in New York City.

How long have you lived with RA?

Since 1995 but only diagnosed as having Psoriatic Arthritis in 1998…..I was inspired to profile myself after ready about Kate who also has PA.

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

Read, inform yourself like crazy and never stop, find a good Rheumy AND a good natural doctor who can compliment the medical doctor. Talk to other people with inflammatory autoimmune disease…join groups with people with similar problems…in person or on the net. Early diagnosis and treatment can stop joint destruction…I waited too long to get proper medicine trying to treat it naturally when I should have been on the disease modifying drugs to stop the destruction…so unfortunately I have a knee replacement and a fusion of some joints in my foot and a very crunchy elbow and my other knee is a bit dodgy and various bits and my back are sensitive if I over do it…and until I was stabilized by my Rheumy I was in intense pain all the time and could hardly walk and would wake up in the morning with fingers that were stuck and very painful.

Do you use any mobility aids?

Hardly at all now…used to have to use crutches, wheel chair, splints for my wrists.

How has living with RA helped to improve your life?

I am more humble, less arrogant, more patient, more accepting of me and others…and I can relate better to my patients…I am a doctor myself…I used to be a real sports guy…always doing sport when I could, very fit…I had to change that image of myself…I miss the intense physical activity and still live vicariously through my friends tennis and golf exploits…

Do you have any visible signs of RA?

No…not to the average person. In fact even many of my close friends find it hard to believe that I have had such pain and that I have a serious disease and I am on strong medicine…I try to be graceful with my problems…and also its not such good advertising if the doctor has bone and joint problems himself!! When my friends find out they say I have courage and show me respect and admiration for overcoming such difficulties…I like that…its satisfying to know that people respect me and know that I have overcome immense hurdles.

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

Talking, sharing with a good friend about my limitations, hugging somebody, good sex with my wife. Listening to music, helping others with similar problems…I used to see a psychologist and that was helpful. She helped to accept myself and see the disease as a gift. She also gave me permission to feel sorry for myself sometimes!

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

Methotrexate once a week, Meticoten 5mg daily, Paracetamol 500mg twice daily, Ibuprofene 400mg once daily…paracetamol with codeine from time to time. I try to have a regular massage, acupuncture, I try to have a sauna and a swim twice a week (but I have not had time for this lately.)

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

Yes…I have 7 kids from 31 to 6…one boy the rest are girls…4 still live at home. The teens drive me crazy! I love kids but sometimes need a break from them. Because I have so many mouths to feed I had to work full time through all the pain and discomfort. I was and am the main money earner so just had to do it. I am fortunate that I can still regularly work 8-10 hour day…I love my work, and live only 5 minutes from the office. My team at the clinic is very supportive and enables me to do my best. Good healthy food and regular sleep are really important to staying in remission.

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Rhian-Welham

Rhian Welham

Real Profiles of Rheumatoid Arthritis
Photos © Rhian Welham

Name?

Rhian Welham

Age?

29

Location?

Llanelli, Wales, United Kingdom

How long have you lived with RA?

1 year.

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

Research it as much as possible, especially via support groups online and locally such as the NRAS in the UK.

Don’t despair. You will feel better in the future.

Try to explain it to family and friends in simple terms and how it affects you every day, so they can begin to understand how much it affects you and what you are able to do at this time.

“Accept that you have a disease beyond your control. Do not judge yourself based on what you used to do or what people expect you to do. Life has changed. Your life will be better if you ask people to help. When your life is better, you will find joy again….”

Do you use any mobility aids?

Have podiatry insoles I use everyday in whatever shoes I am wearing, and also have resting splints for both wrists to sleep in and wrist supports for daytime use.

How has living with RA helped to improve your life?

Helped me to be less judgemental of other. You can’t tell by looking at someone how they are feeling or if they are ill.

Do you have any visible signs of RA?

Swelling of my fingers and hands, a limp.

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

Talking to my husband, venting on social networking sites, reading about others’ experiences online.

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

Methotrexate, diclofenac, Enbrel as of 2 weeks ago.

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

I am a mum to a 2.5 year old girl who keeps me going, without her I don’t think that I’d be getting up each morning to try and have a decent day. My husband couldn’t be more supportive, he is an angel, and I have wonderful parents who also help me whenever I need it. I am very grateful for all my family.

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Erika-Hodgson

Erika Dawn Hodgson

Real Profiles of Rheumatoid Arthritis
Photos © Erika Dawn Hodgson

Name?

Erika Dawn Hodgson

Age?

32

Location?

Calgary, Alberta, Canada

How long have you lived with RA?

I was officially diagnosed in January 2010, but have had joint swelling and issues for about 5-6 years.

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

Ask your doctor for potential links to support networks as well. This was something I didn’t do in the beginning. I saw my Rheumatologist, received my diagnosis and then walked out with no information. I did my own research though, so being armed with the education, however you obtain it, is valuable.

Do you use any mobility aids?

When my knees were really really bad I would use a cane. Since medication though, I have had very few problems with the knees. When my elbows were at my worst I used my children as aids…running and getting me things etc…

How has living with RA helped to improve your life?

I am much more grateful for what I have in my life. I feel like I can teach my kids by example, to plod on in life through the difficult moments, because there are ALOT of them. I feel happier and more confident too, because when I started researching RA, I started educating myself about alot of issues and health concerns. I have other autoimmune diseases that are tricky and annoying and that affect my life (for instance, I have alopecia, so I am visibly different to most others) – and the RA has given me the opportunity to focus less on that and the other diseases, because in comparison, they really aren’t that horrible – and none of these things have ruined my life exactly.

Do you have any visible signs of RA?

When I flare my elbows look twice their size and I can’t bend or straighten them. They are big and red and hot and angry looking. The way I walk because of some damage in the knees and ankles is a sign, too.

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

Talking about my frustrations with people who care and want to listen. Educating myself more. Putting myself out there on message boards and resources like this to show people that life doesn’t have to be awful when you have RA or other diseases. When I accomplish more and more physically during the days too, it makes me feel good about myself, both like I have accomplished something kind of major in my world, but also knowing that I am setting a good example for the kids and my friends and family. I also focus on not feeling guilty on the days when I accomplish nothing but rest. Rest is good though, and needed.

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

Regular gentle exercise for starters, Methotrexate, Prednisone, Folic Acid, Ibuprofen, Losec and I try to get all my vitamins and calcium through diet because vitamin pills kill my tummy.

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

I’m a MOM of two first and foremost – my children are who make me want to continue on this path of education, happiness and contentment. I live with RA, Alopecia Areata Universalis, Chronic Uveitis that flares up often, Thyroid disfunction, a bulging disc in my back from years of walking funny and a recently diagnoised pulmonary embolism. Life is too short to focus on all of the negative things, and I say that I live with these disesases and I mean it. I live with them. They don’t run my life, they don’t define who I am, but they are my daily challenge in this life, and you know what? I feel like I am conquering mountains sometimes just by facing the day, and that feels good when I can function and feel contentment.

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Moselle Irr

Moselle Irr

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.

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