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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Lene Andersen

Lene Andersen

Real Profiles of Rheumatoid Arthritis
Real Profile Andersen Lene
Photos © Lene Andersen

Name?

Lene Andersen

Age?

48

Location?

Toronto, Canada

How long have you lived with RA?

43 years (since 1968 when I was 4 years old).

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

Take control of your medical care, remember that it’s your body and your life and find a rheumatologist who’ll be a team player, understand that you’re in charge and that their job is to provide you with the information you need to make sound decisions. Get counseling – cognitive therapy can be especially helpful in terms of giving you coping skills. Don’t be afraid of your meds, they’re tools to help you get back to living. Live your life, remember that the RA is part of what you are, not who you are.

Do you use any mobility aids?

Power wheelchair since I was 16 (1979), currently on chair #4, a snazzy electric blue number. Have previously used splints, crutches, manual wheelchair for travelling, etc.

How has living with RA helped to improve your life?

Living with the ups and downs of RA for over 40 years has taught me resilience and a rather stubborn belief that I can do anything if I put my mind to it – when you know that pain isn’t the worst thing that can happen, your options expand. RA has taught me perspective and the ability to see the joy and beauty in the small moments – when you move a little slower, you notice things that others might not. And in a strange way, RA has taught me hope. With the perspective of over four decades of living in an uneasy partnership with this disease, I know that RA ebbs and flows, that good times can be followed by not-so-good times and that bad times – so far (knock wood) – are followed by good. The bad times still aren’t fun (understatement of the century there), but I have evidence in my own life that if you stick it through and fight hard, the good times come again, sometimes better than they ever were before.

Do you have any visible signs of RA?

All joints have deformities and limited mobility, some fused, surgery scars from synovectomies right wrist (age 10) and left knee (age 16), both resulting in fused joints and scars from both hips being replaced (age 16 and 17).

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

I’ve found mindfulness can be very helpful, as well as remembering to be grateful to my body for getting me through the day despite some pretty intense challenges. Developing filters so I can ignore the pain and get on with my life (denial ain’t just a river in Egypt!). Good books, good talks with friends, having the occasional hissy fit and then getting back up on the horse that threw me, being in nature helps calm and centre me. Writing – angst- ridden or not – and photography. Anything that takes me out of the dark place, shows me something beautiful or makes me laugh.

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

Current meds: Humira, Tylenol #2, Tylenol Extra Strength, Flexeril , codeine as needed, steroid injections. Have previously been on Enbrel, methotrexate, Paquinil, gold, every anti-inflammatory known to the human race, misc. painkillers.

Throughout my life, I’ve supplemented medical care/treatment with alternative medicine, such as acupuncture, naturopathy, supplements, shiatsu massage.

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

I was born in Denmark and moved, with my parents and sister, to Canada in 1982 and consider both countries home. I’m the eldest, my sister Janne was born when I was 10 years old (that’s her sticking the bouquet in my face at her wedding – true sisterly love!). My family and I are blessed to have found a large chosen family both in DK and Canada, expanding our small family into a much larger one. I was originally a social worker and worked in policy development in the human rights field, but am now in my second career as a writer and photographer. Have the teensiest fascination with animals, especially tigers, share my home with Lucy the Wondercat and way too many books and I share my life with my love, David.

Lene’s blog is The Seated View (http://theseatedview.blogspot.com/) and she is a lead writer for MyRACentral.com http://myracentral.com/).

6 Comments
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.

7 Comments
Cathy Kramer

Cathy Kramer

Real Profiles of Rheumatoid Arthritis
Real-Profile-Kramer-Cathy
Photos © Cathy Kramer

Name?

Cathy Kramer

Age?

42

Location?

Chicago, Illinois, United States

How long have you lived with RA?

January 2004-present

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

Educate yourself and then figure out a path that is right for YOU. Find not only friends in the RA community, but also outside it, that support the path you have chosen for yourself. Find health professionals that support your choices. Don’t be afraid of meltdowns. Be good to yourself. Try new things. Listen to your body. Don’t stop moving!

Do you use any mobility aids?

I don’t use mobility aids, however, I generally have someone near me and have LOTS of help.

How has living with RA helped to improve your life?

Life with rheumatoid arthritis is not easy. Each day is a mystery as to how I will feel. However, living with RA has given me the gift of finding my own personal strength. I have learned that some days I need to let go of the control I want to have over RA and by doing so I actually gain more control over me. I know my strengths and have built on my weaknesses. I have learned to ask for help and how to accept it. I have learned to share my needs. I have met the most amazing people. Some may say that RA has taken a lot from me, but I like to think that in the process of dealing with RA, I have received more than it has taken and for that I am thankful.

Do you have any visible signs of RA?

I have been very fortunate in that I don’t have any visible signs of RA except a limp that comes and goes. I do have some concerns about my knee and we will have to see where it is when all the swelling finally leaves, but so far so good.

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

Each day I remind myself of all the good in my life – there is a lot. I remind myself that “my body is healing” and I believe it. I cry when I need to and don’t feel guilty about it. Most importantly, I surround myself with positive/supportive people.

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

I have been medication free for almost two years. This is the path that feels right for ME. I believe in alternative medicine. I am currently using probiotics, digestive enzymes, homeopathy, fish oil/hemp oil, detoxing my body, and following The Body Ecology Diet.

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

I am a proud momma to 13 year old Alexander and 11 year old Sophia. I have also been married to my best friend Steve for the last 21 years. Together my family and I enjoy life with our three year old border collie, bike riding, homeschooling, TV/movies, nature, and more.

Individually I am somewhat of a natural girl – I love natural hair color, cosmetics that are safe on our skin, whole foods, farmers markets, natural remedies, rainstorms, watching people, and more. I am a daughter, sister and friend. I enjoy teaching English as a Second Language to adults, organizing events for our homeschooling group, spending time with friends, reading in quiet places, time alone, and exercising (yoga, bike riding, light weights, walking).

I think of myself as a positive person and allow that to guide me through the rough days and the easy days.

Cathy blogs regularly at The Life and Adventures of Cateepoo.

6 Comments