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.

7 Comments
Rob Moore

Rob Moore

Real Profiles of Rheumatoid Arthritis
Real Profile Moore Rob
Photos © Rob Moore

Name?

Rob Moore

Age?

40

Location?

Phoenixville, Pennsylvania, United States

How long have you lived with RA?

16 years

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

Learn as much as you can about it and be as aggressive as possible with medications right from the start, regardless of the severity of your case. The disease only gets more resistant with time and you need to knock it out ASAP.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has forced me to slow down, live for today, and enjoy simple moments much more. I enjoy my children and my wife a lot more. I try to surround all of them with moments they will never forget, try to do things with them that become traditions, etc.

Do you have any visible signs of RA?

Bilateral knee replacement scars, finger deformities, elbow replacement scar, wrist replacement scar. Luckily I have had good surgeons so I am told I have really nice scars! I tell my kids I am a scar collector.

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

I always pride myself on having a short attention span. So if I am upset or sulking I know within a minute or so I will be thinking about something else and forget all about what was upsetting me.

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

Imuran, Remicade (going to try Rituxan), and heavy doses of prednisone. I have rheumatoid vasculitis as well as RA so the heavy prednisone is important to keep this at bay.

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

I am the proud father of 3 wonderful children as you see in my pictures. I have been out on disability from work since January of this year and God has blessed me with the opportunity to spend much more time with these guys and I am making the most of it. I have been married for 15 years to the most supportive and wonderful woman in the world – she’s my best friend and without her, I couldn’t be half as positive as I am.

6 Comments
Michelle Gonzalez

Michelle Gonzalez

Real Profiles of Rheumatoid Arthritis
Photos © Michelle Gonzalez

Name?

Michelle Gonzalez

Age?

36

Location?

Milwaukee, Wisconsin, United States

How long have you lived with RA?

34 + years (Diagnosed in 1975 with JRA, at the age of 2 but probably had it since birth.)

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

Don’t let anyone else set your limits. You can set your own limitations-YOU are in control. Do a lot of research, reach out to blog sites, RA groups and maybe a local chapter. If you don’t like your treatment plan, work with you doctor. It is you body and you know it best. What may work for some, certainly doesn’t work for others. Communication with your doctor is essential; just because he prescribes something doesn’t mean it’s meant for you. Be your own advocate!

Do you use any mobility aids?

No, but I have after recovering from surgery. I used a sock aid, a platform walker, crutches and those reachers/grabbers….to be honest, I still use my reacher-I’m only 5’5 I still need to use it to grab things that are out of reach or sometimes I use it to kill spiders that are out of reach, lol!

How has living with RA helped to improve your life?

I have developed and incredible sense of empathy, compassion and loyalty towards others. If I see someone in pain, I am the first one there to help them. If I see someone who needs assistance-I will offer mine. If someone needs a shoulder to cry on-I’ll give them mine. I am most thankful for those qualities.

This disease takes SO much away from you but it has also given me so much strength, and courage for one person I feel like I could conquer the world if I needed to. I have the drive and determination to get through anything. Without RA I don’t know if I could do that.

Do you have any visible signs of RA?

Oh absolutely! I have hip replacement scars (right and left sides) swan neck deformities in my wrists, deformed ankles, swollen fingers, hands and elbows.

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

If you are having a bad day, talk to a good friend, relive fun memories or cry it out. Just remember to take it one day at a time. It may take awhile but sooner or later-you will begin to feel better. I know I am stronger for having RA and I know I fight a good fight everyday but we all get knocked down, it’s up to us to pick ourselves back up again.

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

Two tablespoons of Tart Cherry juice concentrate daily, Calcium, Vitamin D, the occassional massage and acupunture treatment as well as Humira, Imuran and Mobic.

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

I am the type of person that if you told me I couldn’t do something, I would do it anyways out of spite. That’s the determination in me. I have had RA for 34 years but I refuse to let RA have anymore of me then it already does.

If I do, RA wins….and I am not a quitter nor will I be defeated.

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