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Kevin Hewitt

Kevin Hewitt

Real Profiles of Rheumatoid Arthritis
Photos © Kevin Hewitt

Name?

Kevin Hewitt

Age?

31

Location?

Clifton Park, New York, United States.

How long have you lived with RA?

Officially diagnosed in 2008.

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

Stay positive. It’s a lot to take in at the beginning. Arm yourself with information, not doubt. Find a good support system, believe me, it helps!

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

It has made me appreciate more of the little things in life. It may sound a little ironic, but it taught me to slow down and enjoy everything.

Do you have any visible signs of RA?

Just swelling at the moment.

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

The best thing for me is to laugh. My kids always put a smile on my face and make me laugh when I need it the most.

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

400mg Plaqunil daily, 200mg Celebrex daily, Rituxan infusions every 6 months, vitamin d 3000 I.U. daily.

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

I still work a full time job. It’s definitely a challenge, but with today’s economy and the bills relating to my RA, I have no choice to push myself until my Rheumy says I can’t do it anymore. My only advice I can give is to stay positive. Learn what you can and can’t do. Somedays you feel you can do everything, so do some. Some days you feel like you can’t do anything, so don’t. Listen to your body most of all.

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Jose

José

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

Name?

José AKA SKRDad AKA Uncle Hoe and Dad (the last two being the 2 favorite names I have ever been called)

Age?

43

Location?

Scottsdale, Arizona, United States

How long have you lived with RA?

5 years and counting… Not that I am counting. Heh…

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

Educate yourself on your condition. Do your homework on this. It is essential that you understand what you are in for, that you know the monster you will battle for the rest of your life. There are many different colors and flavors of RA. There are many treatment options and you need to be able to make educated choices. You also need a good support system. Your medical team, family, friends… It’ll take support from all. Twitter is a good place to find supportive people who know what you are going through. Other places are blogs and Online Discussion Boards.

Do you use any mobility aids?

I have a cane. I’ve used it mostly when I was rehabbing from knee surgery. I had both knees scoped to clean up what 30+ years of competitive soccer had done to the meniscus. That’s what led to my diagnosis… Anyway, I rarely use the cane but it has come in handy during particularly bad flares. I also bought myself a hiking stick, my kids love hiking on our vacations and I thought it might come in handy. It is made for serious hikers and it cushions impact. I have not had a chance to test it out, neither hiking nor flaring… I do have a Handicap Tag for my car. My Rheumy recommended it and I reluctantly agreed to applying for it. It has saved me many times. There are days when parking up front allows me to be mobile enough to do whatever shopping is needed. Had I parked way out from the store, it would have taken everything I had just to get in the door. A couple of weekends ago, I took my family to Comic Con International. I was able to find parking because of it and so the family joke now is that the Silver Lining for my RA is decent parking. Heh…

How has living with RA helped to improve your life?

That’s an easy one. It has helped me raise my kids aware of Life. Life isn’t always easy, but I truly believe that it is what we make of it. I always preached to my kids that we aren’t victims… that things don’t happen to us, that we make things happen… RA gave me the opportunity to lead by example. It gave me the opportunity to be a better me…

My very devout Catholic mother told me when I was diagnosed, that this was my chance. God was giving me the chance to show who I am. To become a better me… She told me that RA would either make me Bitter or Better… She then took a long look in my eyes and said “I don’t see Bitter in there…” And so I strive for better every day of my life…

Do you have any visible signs of RA?

My right hand has some deviation. My fingers don’t all point in the same direction anymore. But unless I show you and point it out, it isn’t all that noticeable. I just refer to it as my Quasimodo hand.

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

Emotionally? I’m not sure. I’ve never had a problem accepting my RA as part of my new “normal”. I do find that I am more emotional. My emotions seem amplified most days. I’ve been told that it’s not unusual but I am not sure if it’s RA related or not. I could just be getting old. Heh…

Physically… When I feel worst, I just continue my life as usual. I keep moving forward. I find that I can’t stop. If I am home, I do laundry. I keep myself distracted with a good audio book or podcast on my ipod, and I keep moving. It’s almost a compulsion. Weird?…

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

I am on Plaquenil, Arava, Meloxicam, Omeprazole and Simponi. Simponi is the newest and it is a self-administered shot. I was told it was a Pen and I was shown how to use it. Then there was a recall on the Pen and I was sent a syringe. That is something I am just now, after 5 doses getting used to. Doesn’t hurt exactly, but I find sticking a needle into my own thigh a bit disconcerting…

I have also changed my diet. I have completely taken Gluten out of my diet. It turns out I am allergic to it, so one of my dr’s thought it was a bad idea that I stress out my system eating it. I agreed, so it’s out. We (my wife, kids and I. They decided we are a team in this) have added lots of fruits and vegetables to our diet and cut back in all processed foods. Also, we have cut back on red meat. I only have it once a month or so. This was a recommendation from one of my dr’s as well… These changed were much easier than I had originally feared. They have also had a positive impact on how I feel and my energy levels as well…

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

The only thing I have given up in my life so far has been playing competitive soccer. It’s something that I was probably getting close to doing anyway. I was not liking the fact that I had reached a stage where I was no longer the best player on the field. Now I have an excuse. Heh… But seriously, I believe it is very important that I not let RA dictate who I am, what I do. Yes, it restricts me to some degree, some days more then others. But other then that, I refuse to let it define me. I still coach my son’s teams. I chaperone my daughters’ band trips. I am on the Booster’s Board for both my daughters’ bands. I am active in my son’s school’s PTO. I work full time… In other words, I live life to its fullest. I want my kids to remember ME for who I am and what I did. I want RA to be a footnote. “Oh yeah, and he happens to have RA”… To what extent I am and will achieve this remains to be seen. But Life is the Great Adventure and there are never any guarantees. You get one turn on this ride. Enjoy it…

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Joseph Bayliss

Joseph Bayliss

Real Profiles of Rheumatoid Arthritis
Real-Profile-Bayliss-Joseph
Photos © Joseph Bayliss

Name?

Joseph Bayliss

Age?

22

Location?

Dudley, United Kingdom

How long have you lived with RA?

While I wasn’t diagnosed until I was 10 years old, I’d had severe aches and pains in my legs since I can remember. Though we always put it down to ‘growing pains’. It simply never occurred to me to ask why I was the only boy who was in immense pain after a kick around or when we played soldiers in the school playground. It wasn’t until my right knee swelled up badly one day that I and my family started to worry. Unfortunately it took nearly a full year going from hospital to hospital until I was diagnosed with juvenile rheumatoid arthritis at the Birmingham Childrens Hospital. I have found it difficult to live with it ever since.

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

Seek out fellow sufferers! The internet is wonderful for seeking out help and advice from people in the same situation as you, with the exact same feelings and physical challenges. Learn to understand the mental challenges that come along with any form of chronic condition, especially when chronic pain is involved. Find a good rheumatologist! Do your research, thanks to great sites such as RA Guy’s site, trustworthy information is just a click or two away.

Do you use any mobility aids?

I use a walking stick(s) quite often due to both pain and an inability to walk when the condition is at it’s worse. I sometimes use knee pads to both protect my knees and calm things down, they actually work surprisingly well. Had a stair railing fitted to help me with getting up and down stairs.

How has living with RA helped to improve your life?

Hmm, that’s a difficult one. I’d say I’m more understanding of the limitations and challenges disabled people suffer from and care a great deal about them. I appreciate a comfortable seat more then most, same can be said for baths.

Do you have any visible signs of RA?

Thankfully I currently have little serious disfigurement and the only signs of surgery are two small holes in my knees where cameras were used to inspect inside the joint.

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

I struggle to live with this condition daily, so I’m certainly no expert on coping with it to well. But I’d recommend writing down your feelings daily to help you mentally get a grip of matters and will help you understand your pain and the best ways to cope with it. Become part of a social environment where you can discuss RA, this can be locally or of course on the web, there are many great sites out there but it’s good to interact with people who simply understand. A weird one, but I’m a fan of self-hypnosis and it might be worth checking out.

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

Currently take Celebrex Celecoxib. Been doing the usual physical exercises to help the joints and muscles. Take painkillers to help with the immense pain, not sure where I’d be without them.

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

Yes, I’ve struggled with handling RA both physically and mentally. I’ve had spells of depression and even other related symptoms such as panic attacks and anger attacks. I think it’s important that those newly diagnosed are told about the mental challenges that RA can bring let alone the physical troubles. RA is as confusing to those who suffer from it as those who do not, so helping people understand this condition should always be of importance to anyone who is in such a situation. Don’t be afraid to ask for help, especially when it comes to doctors and specialist who will more then happily ignore you if you don’t speak up for yourself. Oh and stay strong!

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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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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.

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