Leslie Rott

Leslie Rott

Real Profiles of Rheumatoid Arthritis
Real-Profile-Rott-Leslie
Photos © Leslie Rott

Name?

Leslie Rott

Age?
25

Location?

Ann Arbor, Michigan, United States

How long have you lived with RA?

Diagnosed in 2008.

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

I would say that it’s really important to know that RA isn’t a death sentence. And contrary to public opinion, it’s (obviously) not a disease of old age.

Do you use any mobility aids?

Most of what I use are more everyday type things like jar grippers and things like that.

How has living with RA helped to improve your life?

That which does not kill you makes you stronger. I think RA has taught me that being a one woman show isn’t enough, and that I need to surround myself with people who enrich my life in multitudinous ways. I think being impacted by any chronic illness is a test of relationships. And those that stay despite illness are the ones who are always going to be there. RA has taught me that I deserve to feel like a whole person, and that some relationships just aren’t worth salvaging.

Do you have any visible signs of RA?

RA has done a number on my toes, but I try to keep those hidden. My right hip is also a bit deformed, but it’s not like I whip my hip out for everyone to see.

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

For me, one of the best ways to cope has been through blogging. The online lupus and RA communities, along with the chronic illness community in general, have been immensely helpful for me.

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

Currently I am on Centrum, Flexeril. Folic Acid, Lo-ovral, Methotrexate, Quinacrine, and Seroquel. I am also on Prednisone on an “as needed” basis. My treatments have mainly focused on the more “traditional” medicine side of things.

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

Leslie Rott blogs at http://gettingclosertomyself.blogspot.com/. She can also be found at http://www.healthcentral.com/.

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Pollyanna Penguin

Pollyanna Penguin

Real Profiles of Rheumatoid Arthritis
Real Profile Pollyanna Penguin
Photos © Pollyanna Penguin

Name?

Pollyanna Penguin a.k.a. Anne but prefer Penguin (or Polly occasionally!)

Age?

41

Location?

Nearest city is Norwich, Norfolk, UK, although I live in a small town outside Norwich.

How long have you lived with RA?

Good question. Diagnosed in 2007 but I’m sure I’ve lived with it for longer than that!

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

1. Read up everything you can about it, but don’t assume that everything you read applies to you. Everybody’s experience of RA is different.

2. Don’t be afraid to try the drugs because of possible side effects. For a lot of people they work and work well; those are the people you tend not to hear from because they’re busy getting on with their lives!

3. Educate your family and friends about it – they can’t read your mind and they won’t know what you’re going through. Don’t assume they aught to just pick it up by telepathy. (It’s very easy to assume that, especially with people you’re really close to.)

Do you use any mobility aids?

I have a cane in the car but almost never need to use it these days.

How has living with RA helped to improve your life?

It’s made me make the most of the good days and it’s also made me pace myself, which means I have forced myself not to be a complete workaholic any longer. It also got me an excellent free trip to Barcelona! (See www.mydayforRA.com)

Do you have any visible signs of RA?

Only if you look really, really carefully! Slightly off kilter toes but I’ve seen worse on people who haven’t got RA, and slightly bent index fingers.

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

Cuddling the cats, ranting at my hubby, cuddling my hubby (often post rant!), living one day at a time, making the most of the good days, focusing on the positives, writing my blog (which has really helped me to focus on the positives … as well as occasionally rant about the negatives)

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

Methotrexate 15mg, hydroxychloroquine, Arcoxia (an anti-inflammatory), folic acid (to counteract mtx side effects, presumably works as I don’t have any side effects!). I also take 5-HTP (a herbal remedy that’s supposed to balance seratonin and help with mood swings and sleep) to help counteract the fibromyalgia I also have.

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

I am very happily married (inspite of above mentioned rants) with three cats: Enormous Cat, Middle Sized Cat and Tiny Cat. The latter is more usually known as Nollie (her official name) or Noodle (because she has the brains of a noodle, or because she looks like a noodle, although based on the latter I have started calling her Ravioli, as she’s ‘filling out’ rather too much). I am slightly cat obsessed – guess you guessed that. I also love doing embroidery and other crafts when hands allow, and going for country walks when feet allow, delving into natural history (especialy entomology) and photography (especially of entomology, but also landscapes, trees, stuff generally). I work full time but not as full as I used to!

Pollyanna blogs regularly at Pollyanna Penguin’s RA Blog.

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M Allen

M. Allen

Real Profiles of Rheumatoid Arthritis
Real-Profile-Allen-M
Photos © M. Allen

Name?

M. Allen

Age?

35 years

Location?

Southwestern Ontario, Canada

How long have you lived with RA?

5 years diagnosed but suffered with systems many years before this.

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

Take a deep breath. It’s not the end of the world, but it is scary. Read all you can. Learn from others. Take it one day at a time.

Do you use any mobility aids?

I do not have any mobility aids yet. I am working on getting orthotics because of my feet issues.

How has living with RA helped to improve your life?
I have been (and sometimes still am) a very independent person. Having RA has forced me to not be “an island unto myself”. I have to take it easy sometimes and give myself permission to take rests. I used to be a perfectionist with my home. Now, I’d rather enjoy my children and take things easy than worry about what my house looks like. Having RA has also taught my children that some people need help and we should help others if we can.

Do you have any visible signs of RA?

I have large nodules on my right hand and smaller ones on my left. I have nodules on my feet, knees and elbows. I used to have large nodules on my elbows but had them removed before I was officially diagnosed. I do not get to wear cute shoes that other women my age wear. I have to wear shoes that do not give me pain. Unfortunately I haven’t found many.

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

During rough times I really enjoy listening to music that lift my soul.. I also enjoy reading my Bible. I have friends that I can vent to as well.

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

I am currently on 15mg of methotrexate, 5mg of Folic a week, 20mg of Arava, 200mg of hydroxychloroquine, 10mg of amitriptyline daily. I also see a massage therapist and chiropractor monthly.

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

I am a divorced Christian mother of three. I have homeschooled all three children for six years, but this year I’m only schooling my youngest. I love my lab-shepherd Ginny. I also love to scrapbook, watch tv and movies, read books, outdoors and the beach.

M. Allen blogs regularly at Making Lemonade…. Please take time to read one of her recent posts, which I thoroughly enjoyed: Year in Review.

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Julie Faulds

Julie Faulds

Real Profiles of Rheumatoid Arthritis
Real-Profile-Faulds-Julie
Photos © Julie Faulds

Name?

Julie “Jules” Faulds

Age?

42

Location?

New Albany, Indiana, United States

How long have you lived with RA?

4 years.

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

First, I would tell anyone who is newly diagnosed to read everything you can about the disease and do not be afraid to ask questions. Second, find your support system- it may not be who you think it is so be open to what you may find. Third- You have a choice to make- you can either live with your disease or you can suffer from your disease. Take time to go through the stages of grieving and then be ready to move on to a new phase of your life. Your outlook and how you approach your disease and treatment makes all of the difference in the world.

Do you use any mobility aids?

Not at this time, but I have a full complement of wrist, knee and ankle braces to use when I need them.

How has living with RA helped to improve your life?

RA has changed my life completely- in a million good ways. Since being diagnosed my husband and I and my parents and I have become even closer. I have stopped being a complete workaholic and slowed down to a manageable workload giving me time to rest when I need rest and time to play outside of work. I have certainly become much more aware that my body is more than my years-long self esteem issues. That in itself has given me a measure of peace. Slowing down has been the best thing I have ever done outside of raising my child.

Do you have any visible signs of RA?

I am fortunate to have very few visible signs. My pinky fingers don’t straighten any longer, and neither they or my thumbs meet my rest of my hands if I try to straighten my hands. My toes are turning outward and I waddle when I walk. The more pain in my hips- the more I look like a Weeble!

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

First and foremost I count my blessings. With the exception of my RA and Fibromyalgia – I live a VERY blessed life. When I am feeling down, I start a list of the things I am grateful for in my life. I also have a blog where I share the journey of trying to live from a place of gratitude. It makes me really think about the good things in my life when I write it, and when I get comments on it, it helps to know that I am sharing my journey.

Additionally, I try to live from a positive place. Negativity and Drama can take over your life if you let them. It can be very difficult to be positive all the time, but I treat it like a challenge. When you are looking at things from a positive place- the “bad stuff” doesn’t seem so bad! It is hard to be sad/angry when you are smiling.

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

For the RA I take: 1cc of injectable Methotrexate every Sunday, 50mg Tramadol 3x a day, 1mg Folic Acid (we are upping it to 2 on my next refill) daily, 50mg Enbrel by Injection every Wednesday.

For the Fibro I also take Flexeril every night to help me sleep and I get massages every 8 weeks.

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

I am a mother, a daughter, a wife, a sister, a friend and an employee. I love to travel-road trips being my husbands and my favorite. I love to read a good book and usually have three or so going at any given time. I enjoy crafts and have found ways to modify my crafting to my abilities. One of my favorite things to do is to raise funds and walk for my causes. I have done 4 Avon Walk For Breast Cancer events (a full marathon each!) and this season two Arthritis Walks. That is a huge thing for someone who is not super athletic. I have also come to love the “sport” of geocaching. I enjoy pro football and baseball- I follow the New England Patriots and the Boston Red Sox like it’s my job.

I am also a bit of a techno-geek. You can find me on Facebook, Twitter, Linked-in and surfing the web at home or via my blackberry. I manage the website for my father’s churches and am my parent’s go-to girl for all things computer related. My favorite holiday is Halloween- it is just about the most fun you can have legally. One of the few things I miss about New England is dressing up on Halloween and spending the day/night in Salem, MA. I am bound and determined to go ghost-hunting one day as I am fascinated by all things “haunted”. I have a dog that I am just nuts about, Harley is my “fur-baby”.

I know that this is a lot of information about who I am- but the message here is; if you take nothing else from this piece- take away that RA cannot take any of these things from me. It can’t change who I am inside. It can make things more difficult for me, but I will find a way to do thing things I love. I only have one chance to live this life and RA or not- I am going to enjoy it!

Julie blogs regularly at An Attitude of Gratitude. She can also be found on Twitter as @CharmedOne1.

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Marianne Hoynes

Marianne Hoynes

This profile is particularly poignant, because just a couple of days ago Marianne shared some encouraging updates about her recent spinal surgery. Many of you may know her as the “lady in the wheelchair” who was heckled at a town hall meeting this past August. That description may not fit for long, though. Marianne walked in on her own, with cane and husband in hand, to her most recent appointment with her surgeon. Please join me in wishing Marianne the best as she continues with her surgical recovery!

Real Profiles of Rheumatoid Arthritis
Real Profile Hoynes Marianne
Photos © Marianne Hoynes

Name?

Marianne Hoynes

Age?

47

Location?

Ocean Grove, New Jersey, United States

How long have you lived with RA?

5 years, along with Sjogren’s Syndrome, Fibromyalgia and degenerative disk disease, all related to RA.

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

If you have not already learned to love yourself, now is the time. Learn to give yourself compassion for how you feel, permission to grieve, self loving words to lift yourself up. Get yourself a doctor you can talk to, and one you feel comfortable calling in between appointments. Flares do not always keep the same schedule that you do.

And of course, you need to educate yourself about the illness and all of your treatment options. It is also very helpful to bring someone with you to the doctor appointments. A trusted friend or family member can take notes while the doctor is talking. It is easy to become overwhelmed with all of the new information and treatment options, and easy to forget something important.

Do you use any mobility aids?

A cane, a wheelchair and my husband.

How has living with RA helped to improve your life?

Living with RA has allowed me to see the love and devotion my husband has for me, in a way I never would have if I were healthy. It has allowed me to make so many new friends, and be part of a community of strong people, who accept me just as I come, and who know…. They just know.

Do you have any visible signs of RA?

I have a widespread rash called Granuloma Annulare, which lays across all of my joints , torso and extremeties. A fresh spinal surgical scar, and very sensible shoes, as I have had to give up my beautiful collection of sexy high heeled shoes and boots from my trips to Europe. And about 30 extra pounds on my former trim athletic frame.

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

I watch my inner dialog, and am careful to say loving, compassionate things to myself. I allow myself a day or so if I need to grieve, but I do not isolate. On those days I make myself reach out to others who are living with RA. That is always validating and comforting, and helps me pick myself up and move foreward.

I focus on what I can do, instead of what I used to be able to do, and if I stumble, I tell my husband, who practically throws me a party if I tell him I folded a load of laundry. I was one who always set the highest goals for myself, and had a “no mercy” attitude about my own accomplishments and perceived failures. Now, I spend more time focused on what I am grateful for, and I am learning the strength of patience.

Periods of chronic pain can make me selfish, as it robs me of any ability to see beyond myself, and getting through each moment is hard labor. I am careful to thank my husband if he has to do extra, and let him know he is appreciated. My RA is a family illness, and we are a team. Before every doctor appointment, we sit together to discuss what to say to the doctor, and my husband writes down a list of questions. He also looks up the side affects of new medications. Some of these practical tasks allow him to be an active participant, and make him feel like he is helping and contributing. In this way, we have been educated together about RA and we overcome it together.

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

Orencia chemotherapy infusions, vitamin D, balanced B vitamins, magnesium and calcium, hydrocodone, a heated mattress pad, as well as medication for Sjogren’s Syndrome and Fibro.

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

When I graduated from school, I was armed with a good education, a strong faith, a deeply embedded belief that we are all our brother’s keeper, and fluency in more than one language, thanks to my parents. I saw the whole world as my place to play, and I wanted to see all of it. I studied at University in Italy , took corporate jobs with international companies so I could live overseas, traveled and made art. There were some very hard times, like the death of my dear father, my mother’s homicide at the hands of a loved one, but I worked always at becoming the best person I was able to be from what life had to offer.

My life experiences so far have taught me to focus on what is beautiful in so much ugliness, and that God graces us even in the worst of times if we are willing to see it. Having been physically fit in my adult life, a weight lifter, runner, hiker, scuba diver, I am learning to live in this new body, and learning how to love what I have been given. With the blessing of close friends, two big dogs made of pure love, and my husband, I am finding God’s grace even in the midst of chronic illness.

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