Deb

Deb

RA Guy Real Profiles of RA 8 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Deb
Photos © Deb

Name?
Deb aka murphthesurf

Age?
54

Location?
Wilmington, North Carolina, United States

How long have you lived with RA?
13 years.

What advice would you give to someone who has just been diagnosed with RA?
First, find the best doctor you can! Find a doctor that will not judge how you feel based on your test results or the number of swollen joints they can count (or they can’t count) but one that will listen to what you have to say. This relationship, the patient doctor relationship will become one of the most important relationships on your new journey with RA. You want a doctor that is compassionate, knowledgeable and one that is available when you need them. Having a rheumatologist that truly listens when you are trying to explain how you are functioning or not with your RA is paramount. Together you can find a way down this new path, together you can make this journey much easier and together you can learn to manage your RA. You need a team player, a doctor that will go to bat for you if the need arises and one that also is willing to treat the possible pain you may experience with RA. A lot of doctors fail to treat the pain of RA. Find a doctor that will treat all aspects with pain management included. And most of all, RA can at times bring us on an emotional rollercoaster. That journey can be very turbulent at times. Never, ever forget that you can get help with this emotional roller coaster as well. RA can be an all encompassing disease that includes our emotional well being. Please reach out and get that help if you need it too!

Second, find a support group for yourself. Your support group can be a local one that meets weekly or if that isn’t available, find one online. It is very difficult for people that do not have RA to understand all the challenges that come with this systemic disease. Surround yourself with as much RA support as you need to walk this journey. We have all stumbled at one time or another and having others there to lift us up, to give us a helping hand, to give us hope is what makes living with RA easier. Chances are this “group” will become like a second family to you over time.

Third, forgive yourself. When I was first diagnosed with RA I always questioned why. You did nothing wrong. I chalk getting RA up to the luck of the draw. It is what it is. I just now have to figure out what to do manage it and how to keep doing those things I love to do. Try not to beat yourself up emotionally on the what if’s, try not to push yourself physically and do take care of yourself the best you possibly can. Eat well, sleep as you should and find those things that make you smile. For me, laughter truly is the best medicine and I believe that if we can find the humor in things, coping will be easier.

Do you use any mobility aids?
I use wrist splints a lot and find canes or walkers are pretty much too painful with my wrists. I have bought many of the RA friendly cooking tools out there and I am continually trying to modify everything I do to make it simpler for my RA body. I don’t own a wheelchair yet but on those bad flare days, one can find me driving the grocery store’s electric scooter. I suspect that eventually I may need a scooter and when and if that day comes…I have my happy scooter stickers ready! My motto is to keep going.

How has living with RA helped to improve your life?
RA has taken a lot from me physically but I have grown a lot emotionally from this disease. I appreciate the simple things in life and have taught myself to find new ways to do the old things I love to do and still refuse to give up. My process is akin to a forest fire. Once the fire has come and gone, leaving the ground damaged, a rebirth starts. The gentle rain comes, the sun shines once again and the seeds start to germinate again. My forest is now filled with beautiful flora and I tend to it carefully.

Do you have any visible signs of RA?
RA is pretty much everywhere. I have RA in my hands, wrists, elbows, neck, ribcage, hips, knees, ankles and let me not forget…the footsies too. It is quite visible in my fingers and wrists and one arm is shorter then the other. Although my hips and knees do have RA damage, so far they have managed to stay even unlike my arms.

Can you please describe some of your favorite coping strategies for living with RA?
I love to laugh. I really believe that laughter is the best medicine and I try to surround myself with positive people and positive things including uplifting people, music and comedies. I also find that when I am feeling a little bit better that doing creative things helps me personally. I love to write, take pictures, garden (well more like my hubby does the gardening while I direct), and I have two fur babies. I also have Fridates (we go out for desserts on Fridays) with my daughter if I am up for it. I started a blog recently entitled abcsofra.blogspot.com in the hopes of sharing my RA experiences. I also love to read other bloggers stories and I frequent several online RA communities regularly.

Can you please describe your current medical (traditional and alternative) treatments?
I have done the following medications: plaquenil, methotrexate, azulfidine, prednisone, Enbrel, Humira, Mobic, Celebrex, Ultram and multiple narcotic pain medications. Unfortunately I have had many allergic reactions over the years. I am currently taking low dose prednisone and ultram for my ra. I am also taking the following: Evening Primrose oil, Omega 3 fish oils, Chicken Cartelidge II, Vitamin D3, Calcium, Multiple Vitamin and Flaxseed Oil. We don’t eat red meat and I also try to eat an anti-inflammatory diet as much as possible. Fridates excluded.

Is there anything else about yourself that you would like to share?
There is a quote I try to live by: “Keep your heart open to dreams. For as long as there’s a dream, there is hope, and as long as there is hope, there is joy in living.” Anonymous

I have decided to write a bucket list to keep my heart open to my dreams. The first three items are done: visit Disney World, do a blog and write a children’s book. I am now trying to figure out how to accomplish the fourth one…stand at the top of the Eiffel Tower.

Nan Hart

Nan Hart

RA Guy Real Profiles of RA 4 Comments

Real Profiles of Rheumatoid Arthritis
Real-Profile-Hart-Nan
Photos © Nan Hart

Name?
Nan Hart

Age?
57

Location?
Rutland, Vermont, United States

How long have you lived with RA?
15 years diagnosed.

What advice would you give to someone who has just been diagnosed with RA?
First of all, be glad that the pain and suffering now has been diagnosed as most of us with RA wait a long time to have it diagnosed and that is tough enough!

Secondly, understand that there are treatments and strategies for managing RA that will allow you to live a joyful, productive life if you commit to what needs to happen and utilize all the tools available.

Third, seek support and comfort and guidance from your “team” which should include your medical folks, family and friends and any support or online RA research and support groups you can find!

Do you use any mobility aids?
Just the standard neoprene braces now and then.

How has living with RA helped to improve your life?
As cliche as it sounds, I have a much deeper appreciation for EVERYTHING from nature to my family to the simplest pleasures in life.

Do you have any visible signs of RA?
I have some nodules, but not many and my wrists are a bit mishappen….otherwise very little.

Can you please describe some of your favorite coping strategies for living with RA?
A good cry now and then is really helpful even though I try sometimes to bury it. I have found that “letting go ” (in an appropriate place -not the grocery store for instance ;-)) provides a huge emotional release. I also really love guided imagery which allows me to fully relax and meditate. Very useful.

Can you please describe your current medical (traditional and alternative) treatments?
Medication wise I am on methotrexate, low dose medrol, celebrex, remicade (but switching to Simponi next month as the remicade is failing).

Is there anything else about yourself that you would like to share?
Throughout this journey I have found great support and relief in continuing my work as the Director of three elder service programs where I have had the amazingly good fortune to develop programming for our community. I also serve on a number of boards, including our New England Regional Arthritis Foundation Advisory Council. I have found that participating in other organizations is very rewarding. I also volunteer at the Court Diversion program which works with first time offenders to find an alternative to incarceration.

I love to read, I an avid swimmer, I love Zumba. Most of all I love spending time with my family – my husband of 34 years, my three sons, my brother and my Dad and my friends and co-workers who are a priceless source of comfort, love and support.

I just started an RA Support Group for our region which has not had one for over 20 years, so I am excited for that to take off. We have had two meetings and the numbers are growing! We are on Facebook – the link is http://www.facebook.com/pages/Rheumatoid-Arthritis-Support-Group-Rutland-Region/202315596455903.

Finally, I have blog I started a couple of months ago and I would love folks to check it out and let me know their thoughts on the topic and/or suggestions to make it better. the link is http://livingwithra-nan.blogspot.com/.

Brad Carlson

Brad Carlson

RA Guy Real Profiles of RA 6 Comments

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!

Leslie Rott

Leslie Rott

RA Guy Real Profiles of RA 3 Comments

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/.

Pollyanna Penguin

Pollyanna Penguin

RA Guy Real Profiles of RA 7 Comments

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.