Maira

Maira De La O

Real Profiles of Rheumatoid Arthritis
Photos © Maira De La O

Name?

Maira De La O

Age?

22

Location?

Alexandria, Virginia, United States

How long have you lived with RA?

4 years.

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

I would tell them to have faith that they’ll be ok and to look for their family for support because they’ll be needing a lot of it. Also to look for help if they feel depressed because there are other ways out besides ending it all, and I say this because I have been there and at the time my only motivation was my newborn child.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I take everyday as if it’s my last one and I enjoy every minute I can enjoy with my son without having to struggle.

Do you have any visible signs of RA?

No, well my right pinky is crooked and it is noticeable.

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

Watching my son grow gives strength and just hearing his laugh makes me feel better and makes ME want to smile as well. I love him to death and he makes me want to live long and hard.

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

I get an IV Infusion once a month I am not quite sure of the medication name, I think its tolanocitabe??? I also take Leuflonomide, Calcium and Alendronate.

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

I was on steroids for over a year after the birth of my son. You can imagine what I looked like. I used to be a skinny girl and I got so big in like 3 months that I didn’t even look like myself. Some of the pictures I sent you I still look a little swollen but I don’t have any when I was really fat. When I was on steroids is when I wanted to hurt myself but the only reason I didn’t was because of my son. It was hard at first and my pregnancy was with no doubt the most painful 8 months of my life. I’ve been through so much and still 4 years after people think it’s whatever, they don’t care to know that it’s serious and very painful to live with RA. I have been through so much and I really love reading the same stories others tell it helps me not feel like I’m completely alone with it in this world. Still now I get depressed and sometimes I wish I could find a cave very far away and just hide for the rest of my life, and when I feel like that I like to be left alone and I hide in my room and just cry because my life just started and RA is a lifetime of pain and suffering.

2 Comments
Annie

Annie

Real Profiles of Rheumatoid Arthritis
Photos © Annie

Name?

Annie

Age?

19!

Location?

Plainfield, Indiana, United States

How long have you lived with RA?

I had gotten very sick with RA around 7 years ago and finally got diagnosed 6 years ago.

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

I would advise people no matter what age they may be is not to be scared. This is just a “speed bump” in life. By having this disease, I believe it only makes us stronger. Also, don’t let people degrade you for it. This makes you special.

Do you use any mobility aids?

No.

How has living with RA helped to improve your life?

I’ve had numerous people came up to me and telling me that they never knew arthritis can happen in younger people. I’m ready to be an advocate for those my age to tell people that I’m not even half the population with people my age that has a form of Arthritis.

Do you have any visible signs of RA?

As of right now my fingers are turning to the side, but I have “ring straighteners” that veer them back to being straight. My fingers and toes are like normally very swollen. Thankfully, I have no more visible deformities. Unfortunately, the RA had gotten into my joints such as my shoulders and hips.

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

I absolutely love to cry. I believe it can be the best way to let out frustration. When I am stressed because my doctor’s appointments are not going the way that I want to go, or I just feel like a blob, I just sit in my bed and listen to music.

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

Currently, I am taking plaquenil, along with B-12 injections. Other than that, I like to be on less medication as possible.

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

Along with RA I was diagnosed with multiple other health problems. I was diagnosed with Sjogren’s syndrome, Lupus (yay for Rupus!), and Crohn’s disease. Thankfully I was diagnosed with RA so I can handle all these other “speed bumps”! I love to joke around about my diseases’, but I will never let them tear me down.

5 Comments
Stefanie Truman

Stefanie Truman

Real Profiles of Rheumatoid Arthritis
Photos © Stefanie Truman

Name?

Stefanie Truman

Age?

20-something

Location?

Washington DC, United States

How long have you lived with RA?

I was formally diagnosed about three months ago, but previous to that my doctors had suspicions as early as ten years ago. It was a relief to finally have a diagnosis and to know that my pain and fatigue was not all in my head.

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

The best advice I ever got about having a long-term illness was to read, but not too much. For about a month after my diagnosis I was downright obsessed with reading everything I could about every possible treatment and outcome. It became too much. Now I am an informed, but not obsessed, consumer of medicine and patient. Another piece of sage advice it to keep living. I am the same as I was last year, I just have this other little annoyance to deal with now.

Do you use any mobility aids?

I do not. I did spend the majority of last year on crutches due to a hip and ankle injury that I now know was RA-related.

How has living with RA helped to improve your life?

Living with RA taught me a valuable lesson- sometimes it is okay to ask for help. Previous to my diagnosis, I was fiercely independent, to the point where I would rather suffer than ask for help. I have learned that it is not a sign of weakness to ask for help on occasion. My cubicle mate now helps me open my water bottle every morning and my friends help me open my pill bottles and separate my medications once a week. I live by myself in DC (all of my family is in Detroit), so I am extremely grateful for my friends.

Do you have any visible signs of RA?

I get rheumatoid nodules on occasion, and my fingers look like sausages five days out of seven. My pinkie fingers are deformed, but I hide it quite well. Other than that, I have a few bald spots and bruises from treatment. Sometimes I think that if RA were a more outwardly- visible disease people would “get it” more, but then I remember that no one can truly get it until they live a day in my shoes.

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

Upon suggestion from my therapist, I recently took up yoga. I never saw myself as one of “those” people, but I really enjoy it. I take a gentle yoga class which focuses mainly on the mind. The visualization and meditation techniques I have learned through yoga have definitely come in handy during treatment days and in the MRI tube. Another great strategy of mine is to just take a nap- something I never did pre-RA. Sometimes your body and your mind just need a rest.

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

I am on methotrexate once a week, plaquenil, prednisone, folic acid, and a high dosage injection of vitamin D. I am starting a biologic in the next few weeks. I also take other medications to counteract the side effects from the prednisone (which I like to call the little white pill from hell). I practice yoga and meditation.

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

I have RA, but I am determined not to let it define me as a person.

1 Comment
SAMSUNG

Vicky Besley

Real Profiles of Rheumatoid Arthritis
Photos © Vicky Besley

Name?

Vicky Besley

Age?

27

Location?

Worcestershire, England

How long have you lived with RA?

4 years.

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

Make sure you are comfortable with your rheumatologist as it makes the whole process a lot easier. Don’t be scared to ask lots of questions no matter how trivial but most importantly don’t be afraid to ask for help.

Do you use any mobility aids?

Yes I have an electric wheelchair for in the house, a manual wheelchair for going outside in so people can push me. They were hard to accept but they mean I can still do things I enjoy.

How has living with RA helped to improve your life?

Its made me realise how strong I actually am! Its made me stop and enjoy things more and reminded me to have fun it lifts your spirits when you have something to look forward to.

Do you have any visible signs of RA?

Yes my hands are bent over, my left knee has fluid and often swells.

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

To just smile and get on with it, I tell myself I can get through this, a smile helps.

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

I have Reiki every week which helps lower my pain levels, also pain killers nothing further (see below).

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

My treatment has been affected by the fact i also have a heart defect called Tetralogy of Fallot which has had an effect on what treatment I can have and also the level of pain killers I can take.

3 Comments
Deb

Deb

Real Profiles of Rheumatoid Arthritis
Photos © Deb

Name?

Deb

Age?

47

Location?

Downingtown, Pennsylvania, United States

How long have you lived with RA?

I have lived with RA for probably 10 years, but was diagnosed 2 years ago.

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

The advice I would give someone who just found out they have RA is, read up on the disease, join support groups and ask your rheumatologists tons of questions.

Do you use any mobility aids?

I do not have mobility aids.

How has living with RA helped to improve your life?

I think living with RA has slowed me down considerably. I appreciate the small things in life.

Do you have any visible signs of RA?

I do not have visible signs of RA, but the words fatigue are written all over my face.

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

My favorite coping ability with RA is a soaking hot tub or shower. Take life slowly. I try to stay positive, everyday.

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

20 Mg of Methotrexate once a week. Folic Acid daily.

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

I think a small part of me is still in denial. I used to be so active, so full of energy. Now, just making it through a 8 hour work day, is a huge accomplishment. I try to learn as much as I can of this disease, as well as, the others I have.

11 Comments