Deb

Deb

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.

8 Comments
8 comments
  1. Cathy says:

    Thanks for sharing Deb with us here. I love reading her blog and always look forward to the comments she leaves on my blogs and those of others.

  2. Thrive With RA™ says:

    Hi Deb,

    I enjoyed reading more about you and enjoy your blog. What children’s book did you write? Is it published? I’ve been writing a book as well, geared for the female audience, primarily preteen-teen, but appropriate for all ages.

    I loved this that you shared, “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.” I LOVE THE POSITIVE IMAGERY! :)

    TWRA ;-)

  3. Jan says:

    So good to see Deb here! That reminds me that I need to work on this, too.

    BTW, I got my RA Guy mug today. I love it!

  4. nan says:

    Nice to read some details about you Deb after you have so kindly commented on my blog, etc. with wonderfully thoughtful posts. I loved your “forest fire” analogy here! So true and I totally concur that humor is an amazing tool! Take care and gentle hugs, Nan

  5. lotsocats says:

    Hi Murph, I am a little confused – happens easily these days :) Is this your site or RA Guys? I liked your annalysis of RA finding the good Doc and the ways of dealing with all the facets of the disease.
    What is your cats name? I got a Rag Doll female kitten for Christmas. Shes crying outside the door right now. Hates any closed pathways. Unfortunately likes to land on the computer keyboard or the printer so I often banish her.
    I am still at home not working. Severe COPD. Arthritis much better since I quit working. Still have occasional flares and pain with heavy duty activity. I have been off Arava since March 3. Hoping my lungs might improve. There is some gain but not enough to do the kind of work I was doing before. Unfortunately with only an LPN degree there are not too many options.
    Love,
    Lotsocats (Barbara)

  6. RA Guy says:

    I really like your point about forgiving yourself. For years after I got my diagnosis, I used to always blame myself.

    What did I do to cause this RA? What did I do to cause this flare? What did I do to…and so on, and so on. Now I know that my illness, the flares, the depression, and the pain are not my fault.

    And reaching this point has allowed me to dump a lot of the pessimism, and stick with the optimism.

    Thanks for sharing your profile!

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>