Brad Carlson

Brad Carlson

Real Profiles of Rheumatoid Arthritis
Real-Profile-Carlson-Brad
Photos © Brad Carlson

Name?

Brad Carlson

Age?

I am 46 years old.

Location?

My wife and I live in Myrtle Beach, South Carolina, United States.

How long have you lived with RA?

I have had severe pain on and off for at least 7 years. I went to Orthopaedic docs, Podiatrists, GPs, and was always told I had OA or it was just from working too much. I used to be a store manager for a department store chain. I once wore surgical boots for 8 weeks to “stabilize” my feet. I was always given a brace and some pai meds and sent on my way. Two years ago I awoke to my wrists swollen to twice their size. I went to the ER and was put in a cast and referred to a orthopedic doctor yet again. This time I was put through a battery of bloodwork, xrays and mris, then referred to a Rhuematologist. I finally had a dx! RA, PA, Sjogrens and Psoriasis. Since then I have also developed Diabetes from the high dose of Pred I am on as well as Addisons. I also have high BP, and COPD.

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

To someone newly diagnosed I would say that knowledge and support are everything. Make sure you are getting answers to the questions you have from your doctor. Research the internet and join support groups. You can feel VERY alone when you get a dx like this, it effectively changes your life, like it or not. You are not alone, there are many people out there in the same boat as you. Connect with them and share your fears, your knowledge, just connect, it will help a great deal. Get copies of your blood-work and research those as well, I wanted to know all there was to know about what I had, it made it easier to cope with. Depression is very common for people with autoimmune diseases, do not try to just block your feelings, If you think you are depressed, talk to your doctor. I take Zoloft myself for depression.

Do you use any mobility aids?

I use canes in my woodshop, forearm crutches in the house and a Power Wheelchair for any sort of distance or going outside. I had special shoes made by an orthotic doc that fit my feet exactly. I use Knorks (half knife, half fork) and wide handled cooking instruments. I have several pick up tools and aids for getting dressed. I have hand braces to stop my fingers from curling up at night. I also have a recliner that will stand me up when I need to get up. If it helps, USE it! Parking placards, wheelchairs, power chairs or scooters may seem an embarrassment to use. Once you find how much pain they will save you, you will not think twice about using them!

How has living with RA helped to improve your life?

I would say living with RA positively affected my life by slowing me down. I worked 80 hr weeks and commuted 3 hrs round trip a day. I am now on Long Term Disability and SSDI. My wife and I spend much more time together, and I have learned to appreciate the small things in life much more. I have also found many great people online through Rhuemamisfits and My RA central that have become great friends.

Do you have any visible signs of RA?

My hands are always swollen, red and several fingers are twisting. My ankles and feet are constantly swollen and red, and my feet are twisting sideways. I continue to find ways to do the things I love to do. RA will change you, but it doesn’t have to stop you!

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

My coping strategies, I pray. That always helps, God will not give you more than you can deal with. I also use online support groups, Rhuemamisfits, RA Central, etc. They can really help you to vent and to reach out to help others in the same situation. I also recently became a contributor for RA Central. Putting my experience to work to help others with this disease gives me a sense of purpose that I really needed.

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

Medical Treatments. I take Orencia once a month, Arava, Salagen, Morphine Sulphate, Oxycodone, Prednisone, Glucophage, Glucotrol, Potassium, Vit D3, Lipitor, Zoloft and a host of other meds. I also take OTC Folic Acid and Omega 3.

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

I have been an avid woodworker for over 20 years, and while I cannot do work like I once did, I am teaching myself to do small projects again. Currently I enjoy making simple toys for the neighborhood kids! Don’t give up on your life, find ways around the pain and keep yourself up!

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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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