Lori

Name: Lori

Location: Ronkonkoma, NY

Age: 44

Diagnosed with Rheumatoid Arthritis in 2001.  Also suffers from Fibromyalgia.

*******

How has your condition impacted you?  Professionally, it has taken away the ability to work full-time which has resulted in my giving up a fairly well-paying job for part-time work.  Because I am limited in energy, focus and physical ability it has led me to spend my time on the things that matter to my heart. Where I once worked in “Corporate America”, I now work at Non-Profit Agencies. Working with my church’s Food Pantry and The Foundation for Sight and Sound has allowed me to use my professional talents for people who need it the most. Also, it’s NOT 9-5, so I can work as my health permits.

Personally, it has highlighted how amazing my family is. When I let go of control of how everything gets done and allow my son, daughter or husband to help in their own way, they can be part of the solution. When my son was only 12, he helped give me injections.  My daughter travels with me and helps me with all the crazy plans I make.  My husband does dishes and shopping and ANYTHING he can think of. Empowering them makes us all feel better.

Finally, this condition does not fit my personality. It is painful and I am not one to wallow or “give in” when my body wants to stop. I am still not sure how to deal with it all. It is a continual lesson in acceptance and it has made me look at how hard I am on myself. No one expects as much from me as I do.

The impact on my life is a moving target but so far, I’m still taking shots!

What would you want people to know about your condition? Apparently, not much - It has taken me years to talk about what goes on in my body and when it does come out I am overwhelmed with worry about letting people down.  Having said that - I want other people dealing with RA and/or fibromyalgia to know they can talk to me about what they are going through. Some of the greatest healing can come from sharing.  

What would you want to tell someone who is newly diagnosed with your condition? Try and be kind to yourself. There is only so much you can do to feel normal. Keep changing doctors until you find someone who shares your vision for your future health. Whenever I am faced with a new barrier – a new joint inflamed, an existing treatment stops working, a new surgery becomes necessary – I fight with all my strength to get back to “normal”, but if the fight falls short of the mark, I’ve learned that by accepting the situation a new possibility will open up. The thoughts in my stubborn brain will change and answers will present themselves in ways that I could not have been imagined.

Lori's favorite quote:  "Do what you can, with what you have, where you are." -- Theodore Roosevelt 

Thank you so much Lori!  

Michelle

Michelle
Mishawaka, IN
Diagnosed with Juvenile Rheumatoid Arthritis at age 15


******
How has your condition impacted you?  I was 15 to 16 years old when I found out I have Juvenile Rheumatoid Arthritis.  At first, I didn't know what to think, how to feel, or what to do.  I didn't feel "sick" so it was confusing to me.  I went to Riley Children's Hospital in Indianapolis for the pain, stiffness, and swelling I had in my left knee and in my right pointer finger.  Slowly, through the years, it started to affect me in different joints.  There were so many days I would just sit and cry.  There was nothing I could do but cry.  I felt very alone.  I lost two jobs because of my disease, I lost friends, and I lost my teen years.  Sometimes, I still wonder how I got out of bed each day.  However, now that I am responding well to medication, I spend most of my time symptom free.  It's been a long road to get me here, but I know it's not over.  I just thank my family for being here and for a husband who doesn't get it all, but tries so very hard to.  I do believe this has made me a stronger person and more compassionate towards others.

What would you like for other people to know about RA?  Just because you don't look sick or act sick every day doesn't mean that you are healthy.  I want everyone to know that.  Be compassionate towards others because you never know what they are battling.


What would you want to tell someone who is newly diagnosed with RA?  I want them to know that it's you and RA.  It's only the two of you.  It's best to just accept it.  It's hard not to think, "Why me?", but it's best to remember that things could always be much worse.  You are the only one who can make yourself feel better.  You'll be just fine . . . even on days when it doesn't feel like it.  There will be days that you struggle.  You will feel helpless at times.  You will experience a period of grief.  However, there is a world of people out there who understand the pain.  It's best to have a great doctor with great nurses.  Also, family and friends will pull you through anything.  It's best to be patient, say your prayers, and realize that you are not alone!

Extra thanks to Michelle for meeting me on a very cold day in December for this photo shoot and then patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thank you Michelle!

Katherine

Katherine
New York City
Diagnosed with Rheumatoid Arthritis at age 24

*******
How has your condition impacted you?  Honestly, I feel that RA hasn't impacted me as much as you may think.  I am still able to do the majority of the things I love.  When I was first diagnosed, learning that I couldn't go out drinking with my friends was quite disturbing.  At 24, that was what we did on weekends!  I've since adjusted my social life and am very happy.

What would you like other people to know about Rheumatoid Arthritis?  Most people associate Rheumatoid Arthritis (RA) with osteoarthritis, stating that, "Oh, my Grandma has that!" when you mention you have RA.  I'd like for there to be greater awareness of who is affected by RA and how it differs from other forms of arthritis.

What would you want to tell someone who is recently diagnosed with RA? I'd like to tell them not to read the information they find online.  But, I know that they will.  So, if you have to look online for info, also look for unique voices and bloggers talking about life with RA.  I've found a great group of young women in NYC all living with RA who have not let the disease change their lives.  Also, remember that the medical treatments have changed greatly in recent years, so you won't necessarily end up as an old lady with crippled fingers!

A special thanks to Katherine for enduring the freezing cold weather last winter for this photo shoot and for patiently waiting for the July/August issue of Arthritis Today magazine to come out before seeing her portrait on this site.  Thanks Kat!!

Leslie

Leslie

Ann Arbor, Michigan

Diagnosed with Lupus and Rheumatoid Arthritis at age 22

*******

How has your condition affected you?  My illnesses have completely changed my life.  I went from being a carefree 22 year old, relishing the promise of graduate school, to having my world completely fall apart around me.  I felt like a spectator in my own life.  But as time has gone on, things have gotten a bit easier.  Mainly, I have a lot of pain and fatigue, although lupus has a broad constellation of symptoms; nausea, dizziness, headaches - basically it makes me feel like I've been hit by a truck and am plastered against a wall.  Having these illnesses has made me have to re-evaluate my priorities.  It has made me question a lot of things about the world, but it has also forced me to learn about myself, just like the title of my blog suggests, illness has brought me closer to myself.     

 

What would you like for other people to know about your condition?  Just because I don't look sick doesn't mean I'm healthy or feel good.  I think that's a huge misconception. 

What would you like to tell someone who was recently diagnosed with your condition?  I would say that even if they can't see it now, there is hope.  I never thought I would get to a point where my life wouldn't be totally preoccupied by illness.  But learning to manage and know your limits are key.  Learn to say no.  Ask for help.  Understand that you are your best advocate when navigating the medical establishment.   

*******

Please take a moment to check out Leslie's great blog, Getting Closer to Myself.

Thank you Leslie!

Katy

Katy
Noblesville, IN

Diagnosed with Rheumatoid Arthritis at age 30.
*******
How has your condition affected you? My condition has affected me in several ways.  The worst part of all of this for me was waiting for a diagnosis.  I feared that I had a deadly disease that would rob me of my opportunity to live a long and full life with the man that I love and our beautiful children. I have resolved to never take my time with them for granted.  I have also become more aware of toxins in our homes.  I have tried to shift towards buying organic food and green cleaning products, though the strain on our budget is difficult.  I am truly less energetic than I used to be, which is far more frustrating than the constant pain in my hands and feet.  I feel that despite great ambitions for my life,  I am somewhat limited by the constant and overwhelming fatigue.  This makes me sad or angry more often than I would like to admit.


What would you like for other people to know about Rheumatoid Arthritis? People should know that having Rheumatoid Arthritis is more than pain in your joints.  It is experiencing all of the feelings that I described and more. It is nearly invisible to an outsider, but the pain and fatigue are real and intense.


What would you like to tell someone who was recently diagnosed with Rheumatoid Arthritis?  If someone was recently diagnosed with an autoimmune disease, I would tell them to always look for the silver lining in any bad situation.  Although it is hard to believe, having RA has had a positive effect on my life in some ways.  My husband and I have grown closer after my diagnosis.  I feel overwhelming love and gratitude when he steps up to the plate, when I am too tired to handle something.  I cherish every moment with him and our children.  I have become a better mother by being very aware of my children's nutrition, with the hope of preventing them from developing an autoimmune disease.  I have been a better friend by providing support to my other friends with similar conditions.  When I am sad, I try to focus on these things and spoil myself with my favorite coffee, of course!

Thank you so much Katy!

Jacqueline

Jacqueline

Long Island, NY

Diagnosed with Rheumatoid Arthritis at age 29

******* 

How has your condition affected you?  After giving birth to my son 3 years ago, my feet were feeling slightly stiff and uncomfortable.  The stiff feeling never went away and, in fact, slowly got worse.  I wouldn't say I ignored it, but I almost got used to the discomfort, thinking I was just having normal body aches.

Kelly

Kelly

Drexel Hill, PA

Grave’s Disease, Sjogren’s Syndrome, Rheumatoid Arthritis, Fibromyalgia, and DSAP (Disseminated Superficial Actinic Porokeratosis)

********

How has your condition impacted you?  I was diagnosed with Grave’s disease when I was 30.  At the time my endocrinologist told me that having one autoimmune disease opens the door for other autoimmune diseases to develop.  I didn’t take that information too seriously at the time.   Ten years later I’m managing 5 diseases.  

Rob

Rob
Philadelphia, PA

Diagnosed in 1994 with Rheumatoid Arthritis, Rheumatoid Vasculitis, and Sjögren's Syndrome

*********

How has your condition impacted you?  I have had bilateral knee replacements, elbow replacement, wrist replacement, and finger fusion.  The rheumatoid vasculitis causes inflammation of my arteries.  I was the 10th person in the US to try an autologous stem cell transplant for RA.  No medications have worked for me.  I went onto long term disability in January 2009 - after having the disease for 15 years.

Dianna

Dianna

New York City

Rheumatoid Arthritis

Dianna says, "At age 52, I was told I was too old to get Rheumatoid Arthritis.  Just got lucky I guess."

Sara

Sara

New York City

Diagnosed with Rheumatoid Arthritis at age 29