Alyssa Hollingsworth

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Photos © Alyssa Hollingsworth

Name?

Alyssa Hollingsworth

Age?

20

Location?

Rome, Georgia, United States.

How long have you lived with RA?

I started showing symptoms for RA when I was 17, but it took about six months for a diagnosis. I was misdiagnosed with fibromyalgia by the nearest pediatric Rheumatologist (who was a two hour drive away, and never stayed in the room with me longer than fifteen minutes). I was unable to see an adult Rheumatologist until turning 18. But once I got in with a good doctor, I was diagnosed correctly and started on treatment.

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

First off: Take a deep breath. Pour yourself some tea/soda/coffee, cup it in your hands, drink slowly and don’t you dare worry about one thing until you’ve finished your cup. Take five minutes to sit still and quiet.

If you have an overactive imagination and a good friend or family member, begin the research of the RA by asking your friend/family member to do the google search for (or with) you. When I was first diagnosed, my mom did the intense research and then told me what I needed to know. Since just seeing some of the pictures made me sweat and cry, this was a good way to hear bad news in a gentler way. As I got used to the idea of it, I began to do more of the research independently.

Do you use any mobility aids?

Right now I always have a stretchy medical bandage thing for finger physical therapy, and I’ve spent time in and out of braces. I need to invest in a good bottle opener.

How has living with RA helped to improve your life?

I think living with an autoimmune disease can be a gift, because it forces me to live consciously.

Recently I had to have surgeries on my fingers (see below). Before my second surgery, I found myself just laying my hand flat on my desk and staring at it. For those two or three weeks before I thought I’d lose the ability to ever straighten that finger, straightening it was a blessing—it became a miracle. RA makes me appreciate what I have.

Do you have any visible signs of RA?

Pre-this summer, I had significant swelling in my pinky and pointer fingers on my left hand and on my middle finger on my right hand. A few months ago, my joints began to collapse with no warning. I’ve had fusion surgery on my pointer-left, which has left my finger scarred and frozen (won’t bend anymore). I had surgery my right-middle, but unexpectedly the doctor was able to save the joint. This means more scarring and a lot of physical therapy, but at least it still bends. The pinky’s still swollen until later this fall, when I expect I’ll be having a third surgery.

I also have Raynaud’s Syndrome, which means cold and blue feet.

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

Before the collapse of my joints, I would do small, quiet things that brought me joy at least once a week. For me, that was going to a local coffee shop with a favorite book, buying fresh bread, or hanging out in a book store.

After the collapse of my joints, I’ve found I need an extra push. So I am beginning to do small impossibilities in increasing doses. I try to do one small impossible thing a day (like taking the time to eat a salad or stretch), one bigger impossible thing a week (giving myself the HUMIRA shot or going to a dance class), and one really impossible thing a year (travel abroad or write a book). Since I started doing these things, consciously, I’ve found I feel more in control and confident.

Blogging has also done wonders for me. As a young adult trying to deal with this when my peers were all caught up in the latest fads and gossip, I often felt very alone. Blogging allowed me to express what I felt—the good and the bad. It is also a huge encouragement going forward, as I’m able to look back at some of my entries and remind myself of my optimism (or sometimes remind myself that this pit isn’t the only one I’ve been in). Recently I discovered that by being honest on my blog, I also opened the door for others to be honest in their struggles. It’s a great way to create a community and to get support.

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

HUMIRA, Methotrexate, Plaquenil, Prednisone, plus tons of vitamins.

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

I’m in my third year as a college student, getting my undergraduate degree in English/Creative Writing. I work part time during the semester and full time at breaks. I travel a lot, and have gone into third world countries to do aid work. I’ve written three full manuscripts (novels), and hope to one day be a published author. All this to say—RA might try to take our hands, our joints, but it can’t stop us from doing what we love (unless we let it). C.S. Lewis said, “You do not have a soul. You are a soul. You have a body.” I cling to this whenever I feel myself slipping. I am who I am, and RA can’t cripple that.

If you interested in learning more, here’s my blog: http://midenianscholar.livejournal.com/

Katie Rix

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Real-Profile-Rix-Katie
Photos © Katie Rix

Name?

Katie Rix

Age?

22

Location?

Harrogate, North Yorkshire, England

How long have you lived with RA?

I was diagnosed in 2008 when I was 18.

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

No matter how bad things seem right now it’s really not the end of the world, there are so many amazing treatments available. It can take time to find the right treatment for you and for the treatments to begin to work and to see the results, so although it is difficult you have to be patient.

It is totally natural to want to find out as much as you can about the disease but do NOT believe everything you read on the internet because you will come across horror stories and frightening thoughts that probably don’t even apply to you. Try to make sure you have as much rest and sleep as you possibly can, the fatigue caused can have as much an effect as the RA itself. Try and be patient when explaining to others exactly how serious RA is and what it involves and how it affects your life because RA is often considered to be an “unseen” disease it can be difficult for people to understand how serious, painful and debilitating the disease is. I had no idea what arthritis really involved before I was diagnosed. If I’m honest I thought it was only for people in their seventies.

Do you use any mobility aids?

I have an electric tin opener but I couldn’t use a handheld one before the arthritis struck haha! I sometimes use wrist supports.

How has living with RA helped to improve your life?

I have definitely turned into a “glass have full” kind of person and I try to see the positive in everything. I’m a lot more tolerant and understanding towards other people now. It’s also made me thankful for what I already have, my family, my boyfriend and my friends.

Do you have any visible signs of RA?

I often have swelling in my joints, especially my wrists and have nodules on my fingers which come and go.

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

Looking at photos from a really happy time such as holidays and birthdays and websites like his are also good and remind me that I’m not the only person in the world with RA and that there are people who are much worse off than I am.

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

Hydrocloroquine sulphate, humira, methotrexate and folic acid.

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

RA is a huge part of my life but it doesn’t control everything I do. I’m only just 22 and I still do everything I want to. I have just completed my degree in English Literature and I am deciding what to do next.

Already this summer I have been to Turkey and a festival with my boyfriend, had an amazing time in Ibiza with my friends and I still go out, get drunk and fall over. Yes, I probably feel worse than most the day after but that’s something I can deal with. Next summer my friends are planning on volunteering in Asia… Don’t let rheumatoid arthritis slow you down!

Tamara Vasquez

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Real-Profile-Vasquez-Tamara
Photos © Tamara Vasquez

Name?

Tamara Vasquez

Age?

24 years young!

Location?

Alvin, Texas, United States

How long have you lived with RA?

I have lived with RA for 6 yrs now.

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

The most important advice is follow the doctors orders. Do not miss your appointments, because the longer you wait to get treatment the worse your condition and damage will get. I was so hard headed about following the doctors orders and sticking with the appointments because I had not accepted it. I was always healthy and to all of sudden be told you can’t do this and you cant do that, take this medication with food and take this one once a week or twice a day was just ridiculous but I wish I would have followed the orders sooner because who knows, I might have been in control of my RA by now.

Do you use any mobility aids?

Before I had my 7 month old, I would wear ankle braces on both my ankles, I had a knee brace on my right knee and I also wore a wrist brace on both my wrists. Now, and I don’t know why and neither does my rheumatologist, I only wear a wrist brace on my right wrist. My right hand is the only thing that gives me a whole lot of problems. My ankles, knees and left hand no longer hurt but they still swell every once in while.

How has living with RA helped to improve your life?

It made me such a strong person, I can withstand any other pain, cut, fracture,sprain, surgery etc, other than my flare ups. Not only did it made my physically stronger, it has made me emotionally, and mentally stronger. I was depressed at the beginning of this RA journey but i have overcome that and accepted that fact that yes I do have a disease but its a great conversation starter. People seem to be amazed that someone my age has this “old people” disease and fills me with joy when I explain to them that RA knows no age and I share with them the facts. They leave with something new. I amaze myself at the fact that I DO NOT allow this disease to control me or my family’s life. I spend a great deal of time with my children doing activities that we all love because who knows maybe one day I will not be able to but I will do everything in my power to prevent that.

Do you have any visible signs of RA?

In my right hand you can start to see a little deformity in my fingers but it’s not too much and I’m hoping that we are slowing down the damage. My MRI showed there was great damage to my cartilages and quite a bit of bone loss. You can definitely tell that my hand is constantly swollen.

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

Some of my absolute favorite are spending time with my kids. Just joking around with them, playing games and just laughing. My family never quit on me, no matter how hard headed I was, they never quit and they are still here for me. I also see a counseling therapist who has helped me deal with my emotions especially when i have a flare up and get so overwhelmed with the fact that I can not button my pants or brush my hair. I have what I call “me time”, this is when I spend time just by myself or with a friend getting pampered for example pedicure,manicure, movie or anything that is just plain relaxing.

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

I was taking Celebrex but wasnt working anymore. So I’m back on Prednisone and Lodine for now but I am waiting on my insurance to approve Enbrel.

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

I am 24 year old divorced mother of two beautiful boys.I am a fabulous RA Gal who switched from wearing heels everyday to flats because my ankles swell or I am in pain but i make it look good! I work full time and a mother full time. I am a daughter, mother, aunt, sister, cousin, granddaughter and ex wife(but happily free) and I am a friend. I will NEVER allow rheumatoid arthritis to control my life or control me. I love my life and anything and everyone in it. I live to the fullest, love unconditionally and I laugh because I AM HAPPY! I may be in the worst pain imaginable but I smile everyday! 😉

José

RA Guy Real Profiles of RA

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…

Vanessa V

RA Guy Real Profiles of RA

Real Profiles of Rheumatoid Arthritis
Real-Profile-V-Vanessa
Photos © Vanessa V

Name?

Vanessa V

Age?

32

Location?

Toronto, Ontario, Canada

How long have you lived with RA?

5 years, but first flare up was limited to just my knees. Took a year to diagnose them, and after 2 years on hydroxychloroquine, I was declared in remission, and stopped taking the meds. UNTIL April 2011, flare up came back with a vengeance. Started in my lower back, and spread everywhere. Knees, ankle, wrist, entire left arm, jaw, neck and lower back. An MRI wasn’t able to confirm AS, but I do a form of seronegative RA. I am currently waiting ridiculously long for my rheumatologist appointment, so I decided take matters into my own hands.  I am also not a huge fan of pharmaceuticals anyways. So while I wait for my appointment, I am reading as much I can and about 2 months ago decided to try diet and alternative therapies. I stopped eating all meat except organic salmon, no dairy, no processed food, no white flour, no refined sugar, no nightshade veggies (tomato, eggplant, peppers), no fried foods, no vinegar, no spicy foods. I keep a list of my fridge called the “Terrible” list, and whenever I eat something that causes a reaction, it goes on the list. Reactions happen as quickly as 10-24 hours now. I ate a cupcake at a bridal shower and couldn’t move my entire right hand for a week. (NO MORE CUPCAKES!) Basically I eat fruit, veggies, nuts, organic yeast free rye bread, salmon and occasionally eggs. I juice everyday and take a pretty big lot of supplements (even more than i usually take). Now don’t get me wrong. I LOVE food, but i decided that walking was a little more important. My diet doesn’t sound very exciting, but if it means my symptoms are easing up without drugs. I’m all in.  It took about 2 months, but i am 95% symptom free (bad days still exist, but not like they used to be), and am slowly starting back to my yoga practice, and even went for a run/walk last week. I’m not perfect, but I’m doing this DRUG free…for now.

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

Be patient. Find kindred spirits. Twitter has been a great place for connect with others who understand what you’re going through. Its nice to not have to explain myself  whats wrong with me over and over.

Do you use any mobility aids?

I have a cane, that i use when my knees get really inflamed. I haven’t had to touch it in almost two months!

How has living with RA helped to improve your life?

I am so much more patient now. I appreciate little things. I’ve also developed a new understanding of how food affects the human body.

Do you have any visible signs of RA?

Just really inflamed knees at the peak of a flare up.. And lately since my diet has been changed, I mostly get compliments on how great I look. Ha!

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

Music. On a bad day, turn up the music, and just lay and take it in. Also my yoga practice has helped me focus and meditate when I need it. I am also not afraid to cry if I have to. Always feel better mentally after a good cry.

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

Diet and acupuncture. I was on Voltaren at the peak of this flare up, but DRUG FREE for almost 2 months.

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

Being this sick has really given me a new appreciation for my family (have been AMAZING), my yoga practice (Ashtanga yogi over 2 years now), my ability to run again (not for very long, but I’ll get there) and my friends (who have been equally as amazing). Stay strong, don’t be afraid to make changes in your life. You may not see the results right away, but they will come.