Jodi McKee

Arthritis Today

Jodi McKee11 Comments

(click on the photo to read the article)

A big thank you to Arthritis Today magazine for profiling me and my portrait project in the July/August issue!  I am absolutely thrilled.  Welcome to all of you who are finding me through this article.  I am always on the look out for new subjects to photograph, so please e-mail me at jodimckeephotography@gmail.com if you are interested in participating!


Also, thanks to Kat and Michelle for posing for portraits last winter and waiting until now to see them online.  I will be posting their profiles over the coming weeks.  Thank you all so much for your support.  It means the world to me.

Leslie

Jodi McKee2 Comments

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!

Maya

Jodi McKee3 Comments

 

 

 

 

 

 

 

 

 

 

Maya
New York City
Diagnosed with Undifferentiated Spondyloarthropathy at age 15
*******
How has your condition affected you?  It wasn't easy to live in pain through my childhood and my most formative years - it's not easy today and it wont be easy tomorrow. I've gone through my share of denial, grief, anger and fear and I'll go through it again. But the difference now is that I've learned to see my illness as just part of me - the person I'm proud to be. Being in chronic pain has made me search for the the small joys: the people, animals, places and things that I can still enjoy every day. It begs me to accept the ups and downs and to roll with the punches. It has also taught me to accept myself on a different level and, instead of dwelling on what I can't do now, take pride in the things I've overcome. I've called my disease a "built-in friend filter" because the ones who are left standing beside me are the ones who are meant to be there. I've also come to know myself and others in a much more intimate way.  Looking forward, Spondylitis has also helped me recognize my calling for social work and helping children, young adults, siblings, parents, and families as a whole cope with the challenges posed by chronic illness and disability. I don't know that I would have found this purpose without my disease.
 

What would you like for other people to know about your condition?  Living in pain every day is something that's hard to describe, but thank you for asking me to try. Sometimes I want to talk about it and sometimes I don't, but usually a simple and sincere, "How are you feeling today?" goes a long way. In fact, if you're wondering anything about my illness, it's okay to ask (it would show me you cared to know). It means so much when you come to understand the unpredictability of this disease, realizing that things can change from hour to hour and that I can't always keep plans. It means even more if you're content in skipping these plans and just being with me. It's hard to see you sad for me, so try not to feel that way. Instead, focus on the things I can still do. But really, it's the littlest things - the every day things - that can mean the most... carrying a heavy bag when you see pain in my face, walking slower than normal, or even opening that jar that I swear I loosened for you ;) 

What would you like to tell someone who was recently diagnosed with your condition?  Congratulations on having a name and reason for your pain and for taking a crucial step toward feeling better. Now make sure you have a doctor who will work aggressively to slow or stop the progression of the disease. After all, we're lucky to live in a time with medications that do just that. Don't just take his or her word for things. Actively search for alternative therapies, work with this doctor, but still be your strongest advocate. When the diagnosis settles in more, you have a choice to make: do you make this disease an enemy or just another part of your life? Try not to fear accepting  "letting the disease win" - you have enough to fight without fighting yourself. Allow yourself to feel proud of the simple fact that you're living in the face of pain. Really listen to yourself and it's likely you'll become self-aware in ways that others could only imagine. You'll also develop great empathy, recognizing pain in peoples' faces. This connects you to humanity and your fellow sufferers on a deeper level, so talk to them. You don't have to do this alone. Spondylitis will make you appreciate the "good days" that much more. It will force you to slow down and appreciate the people who will slow down with you. Most of all, try not to beat yourself up because ups and downs are the name of the game. Illness doesn't have to be the end of anything, so focus instead on all you can still do and get ready to surprise yourself with your own strength. 

 

 

  

 

 

 

 

 

 

 

 

 

(We met a super cute puppy during our shoot.  Hi Randolph!)


Please take a moment and check out Maya's wonderful blog, Loving with Chronic Illness.
Thank you so much Maya!!

 

Katy

Jodi McKee6 Comments

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!

Heather

Jodi McKee5 Comments

Heather
Louisville, KY
Diagnosed with Fibromyalgia at age 14.  Also suffers from Epstein-Barr and Chronic Fatigue Syndrome.
*******
How has your condition affected you?  My condition has played a huge role in my life through the years. My lack of energy and increased pain has led me to isolate some and not participate in activities that I enjoy. In school, my pain made sleep and participation in sports challenging. As an adult I find completion of the basic of tasks (like laundry) almost impossible at times. I have missed some work, canceled on friends and have become a needy wife during flare-ups. Not to mention the emotions attached - mostly depression. Some days I feel like an observer of my own life - feeling so detached from all around me (due to pain, brain fog, fatigue, etc.) However, now I am learning to be more mindful of my body and to pay more attention to how I am feeling in a positive way - using my body as a barometer of sorts to see what positive behaviors need to be implemented.

What would you like for other people to know about Fibromyalgia?  I want others to know that it is a REAL condition and that just because you can't visibly see problems with the body doesn't mean that everything inside is working spot-on! 

What would you like to tell someone who was recently diagnosed with Fibromyalgia?  Learn from your body - take this opportunity to truly connect to your physical and emotional self. Be an active participant in your life - learn what's important to do (like relaxation exercises, stretching, sleep, vitamins, being w/ friends etc.) and what you can live without - Don't watch your life pass you by!

Thank you so much Heather! xo

Brief Hiatus

Jodi McKeeComment

Hello interwebs.  i just wanted to let you know that I am still here.  Due to the holidays and the extremely cold weather of late, coupled with an extended bout of bronchitis, my portrait project is kind of on hold for the moment.  I have a couple of pending portraits and some other exciting things lined up.  Stay tuned!

And please e-mail me if you are interested in participating in my project.
jodimckeephotography@gmail.com

Jacqueline

Jodi McKee18 Comments


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.


Last year, it started to become significantly worse and I went to my Primary Care Physician (PCP), who told me that it was simply some tendonitis I was experiencing after a childhood of being active.  That sounded okay and I went with it.  I had a neck injury from a past car accident, and attributed a lot of my pain to that as well.  In the past year, my symptoms progressed and spread to my hands and knees.  My feet got so stiff that I couldn't walk in the morning without cracking and popping them at the joints.

I finally went past my PCP and went straight to a Rheumatologist.  I was immediately diagnosed with Rheumatoid Arthritis.  I was more emotional about it than I excpected.  I guess hearing that you have a life-long disease is hard to swallow no matter what it is.  I was told I needed to begin Methotrexate right away.  The Rheumatologist ran down a huge list of scary side effects.  But it is necessary and effective in stopping the progression of RA.  I haven't been able to begin the treatment yet though, because a few months ago I was given a live virus vaccine.  In the meantime, they have me on Prednisone.  It is helping a little, but making me gain weight quickly.  In fact, I was worried about my picture for this project because of the puffiness of my face!

I am in a great deal of pain, and can now only sleep for about an hour at a time before the stiffness and pain wakes me up.  I am a mother and work full time and it honestly makes a lot of my days a struggle to get through.  I am hopeful that the treatment will turn this all around for me.  I am lucky to have the love of my family to help me through each day.

What would you like for other people to know about Rheumatoid Arthritis?  I think the name of the disease is misleading for most.  Although our joints are affected and become arthritic, the disease itself is an autoimmune disorder.  It is not a joint disorder like most believe; it is our immune system losing the ability to identify the difference between the good and bad things in our bodies, so it begins to attack everything.  I told my family to all please read up on this disease, because I feel like they must think I am nuts when I tell them I am having a bad day and feel miserable, when realistically, I look just fine.  I think it has been a lesson to me to not assume that you understand another person's struggles just by looking at them.  There could be a quiet struggle underneath that they are fighting every day, which is exactly the situation for most people with an autoimmune disorder.

What would you want to tell someone who was recently diagnosed with RA?  Well, I am one of those recently diagnosed people, and at this point, still live with severe pain and sleepless nights.  Turning to others who have RA has really helped me understand that the emotions I am feeling are normal, and that there is definitely a light at the end of the tunnel.   So many live with this every day, and so many continue to live normal, comfortable lives.  I look forward to getting to that point.  I continue to research every day so that I can make sure I am doing everything I can to help myself and others who have RA.

Thanks so much Jackie!



Jennifer

Jodi McKee7 Comments


Cold Spring, NY
Diagnosed with Fibromyalgia at age 36
********
How has your condition impacted you?  I discovered I had fibromyalgia when I went to see a rheumatologist for a persistent pain in my hip.  My GP thought it might be rheumatoid arthritis, and she wanted a second opinion from a specialist. 


Turns out the hip pain was a soon-gone case of bursitis, but while on the examining table, the rheumatologist touched pressure points in certain places.  The pain was so intense, I burst into tears and begged him to stop.  Apparently there are close to 20 different pressure points to test for fibromyalgia; we stopped after 7 or 8, because it was so obviously positive.  Since the diagnosis, I've had to cut way back on exercising -- repetitive motion and high-impact activities only aggravate it.  I've tried swimming, but because the FM also makes me extremely low energy, combined with chronic depression, sometimes I quite literally can't get out of bed. Yoga is a good compromise; it gets my muscles moving, and is calming as well.


What would you like other people to know about Fibromyalgia?  Chronic, invisible illnesses need patience and understanding, from ourselves as well as our families and friends.  It's the same with depression.  It's not something you can snap out of; there's no Magic Pill that will make FM, RA, or any other autoimmune disease vanish in 10 days.  There are treatments, yes, but they have side effects, and they don't always work.  And often with fatigue, people think you're just avoiding things, checking out -- but the wave of tiredness that sweeps over the body is just that, a wave.  It can bring a body to its knees. Add to that, the pain. Tap me on my arm, and it might hurt for a good five minutes.  I am not a wuss.  It's not me being weak.  It just is.

What would you want to tell someone who is recently diagnosed with Fibromyalgia? There are some people who, once they are diagnosed with a chronic condition, embrace it as a defining feature, and it becomes who they are.  I would advise against this.  You're still alive.  That said, definitely treat it as best you can, and get the help you need, be it changing your diet, trying a new medicine, or seeking psychological counseling to help cope with the fears and stresses of being sick all the time.  I waited years before admitting I needed to face it, though I still don't talk about it much, and I try not to become preoccupied with it.  But I am more aware of it, and more respectful of how serious it is.  Just listen to your body.  If you need to lie down, lie down, and don't feel guilty about it.  If someone is giving you a hard time, flood them with links and information; this is very real.  And frankly, it is what it is.  And it can, and will, be OK.

Thank you so much Jennifer!

NOTE: While Fibromyalgia is not technically considered an autoimmune disease, I will include it in my project as it is definitely an "invisible illness" with a lot of symptoms that are very similar to many autoimmune diseases, including chronic pain and fatigue.   -Jodi

Kelly

Jodi McKee11 Comments

Kelly
Drexel Hill, PA
********
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.  

Rheumatoid arthritis is usually my main health concern, but all of the diseases can kick my butt from time to time.  It’s not always easy to manage multiple prescriptions and doctors appointments, along with daily life especially when joint pain and fatigue make simple things like walking and driving difficult. I had to learn how to rest and be kind to myself.  The hardest thing has been realizing that I need to ask for help now and again.  I still struggle with that the most.
 
When I was diagnosed with Rheumatoid Arthritis in my late 30’s I thought it was the end of the world.  Now I know it’s just a different way of living in the world.  I have a good life even though it isn’t the life I envisioned and it did take me a while to accept that.


What would you want people to know about your condition?  Whenever someone hears that I have autoimmune diseases they always say, “But you don’t look sick” or “you’re too young to have arthritis”.  I want people to know that having an autoimmune arthritis is different from osteoarthritis.  It can affect people at any age, including childhood.  According to the Arthritis Foundation,  “Rheumatoid Arthritis  affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.” 


There is a lot of information out there...some good and some bad.  I’ve joined the Arthritis Foundation and Buckle Me Up! Movement to help spread awareness of autoimmune arthritis disorders like RA & Sjogren’s Syndrome.


What would you want to tell someone who is newly diagnosed with your condition?  It is important to find a doctor that you feel comfortable with and can have open and honest communication.  Don’t be afraid to ask questions about recommended treatments and holistic alternatives. I also recommend seeking out support groups or counseling because managing a non-curable disease can be overwhelming at times.  Know that you are not alone and don’t be afraid to ask for help.


Thank you so much Kelly!

Rob

Jodi McKee6 Comments


Rob
Philadelphia, PA


*********
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.

What would you want people to know about your condition?  The body truly does adapt to what you're dealt.  My joints certainly don't work the way normal joints do, but my body has figured out how to move about.  Sure I've been forced to slow down, but this also gives me a chance to enjoy other things that I would have easily missed.  It also improves the sense of humor - it's frustrating to try and fail 26 medications and see my body get progressively worse.  So, I have to improve my sense of humor and short attention span.

What would you want to tell someone who is newly diagnosed with your condition?  Be as aggressive with treatment as possible, regardless of the severity of your disease.  RA only gets more and more non responsive, so the key is to jump all over it from the beginning.  Also, find out as much info as you can about the disease and always ask questions of your doctor.  Don't just accept their answer if you believe otherwise.

Thanks Rob!!

Jessica

Jodi McKee4 Comments


Jessica
Brooklyn, NY
Diagnosed with Polymyositis in 2004 and Idiopathic Thrombocytopenia Purpura (ITP) in 2006

 
***********
How has your condition impacted you?
Well, now I can look back and count myself lucky because the progression of my disease was very slow, my doctors recognized it early, and I responded well to medication.  A couple of years ago was pretty difficult as not only did I have to deal with a loss of physical strength but I also had to deal with a loss of identity.  I've always identified as a strong person, able to do anything on my own, and this disease has put a serious crimp on that kind of thinking.  It is something I still struggle with now.  In other ways, my life is better since I take much better care of myself. I  eat better and really know the importance of regular exercise and sleep.
What would you want people to know about your condition?
Well, there is the obvious that you can't always tell if someone is disabled.  Polysyositis is a muscular inflammatory disease where your immune system attacks and breaks down your muscle tissues.  They don't know what causes it or how to really treat it so they just suppress your immune system with powerful (and sometimes dangerous) drugs.  Research is being done. The Myositis Association has some pretty good information (and they accept donations) at www.myositis.org.


What would you want to tell someone who is newly diagnosed with your condition?

It is very important to find a good doctor, one that you can work with and listens to you.  You'll be seeing that doctor for a long time and they'll be asking you to do things you don't want to do.  It's best to have someone who is willing to explain things thoroughly and who you feel hears your concerns.  Also, what you eat and how much you sleep can make a HUGE difference in how you feel.

Thank you so much Jessica!!

Carrie

Jodi McKee4 Comments


Carrie

Brooklyn, NY
*********

How has your condition impacted you? I’ve been lucky in that the symptoms have been minimal and I’ve responded well to medication.  Since the outlook for both conditions is not all that great as they progress, I’ve become much more conscious of my health and daily decisions that might affect it in hopes that I might be able to slow, manage or stop progression.
What would you want people to know about your condition? Good question.  I’ve never thought about that.  I guess for starters, just that it exists.  It’s pretty rare, so no one’s ever heard of it.  And that stem cell research can play an important role in treating/curing it.  So, you know, I’d love it if people would support more stem cell research.
What would you want to tell someone who is newly diagnosed with your condition?  That most things sound scarier than they are, and this is no exception.  That medicines—even a ridiculous amount of daily pills—can be tolerable.  That you should make sure you like your doctor(s). That just because your friends and family will never have heard of PSC, doesn’t mean that they don’t care. That it’s manageable. That laughter always helps (yours or someone else’s). That once the news sinks in and you readjust, there will be days (weeks even) where you don’t think about it even once.

Thanks so much for sharing your thoughts Carrie!

Welcome!

Jodi McKee11 Comments

I am starting a portrait project of people who have an autoimmune disease (rheumatoid arthritis, lupus, ankylosing spondylitis, fibromyalgia, celiac disease, hashimoto’s disease, etc.).  Often, these diseases strike people at a young age and are chronic.  We don’t usually look sick, but they never really go away.  There are so many people out there who are struggling with these health issues, and the general public doesn’t really understand. 

I want to give a face to these diseases to inform my friends and family at least, and the world at best, that we really aren’t “too young to have that”; and that even though we “don’t look sick,” we are.  And we need your care and support.

I am located in New York City and sometimes travel to the Philadelphia area and will likely be in the Baltimore area on occasion.  I will also be in Northern Indiana in December.  So, if any one wants to volunteer for a portrait session or has a friend or family member who might be interested, please e-mail me at jodimckeephotography@gmail.com.  Thanks!!

About

Jodi McKee22 Comments

I am a photographer living in New York City.   I was diagnosed with Rheumatoid Arthritis in 2008 and have decided to start a portrait project of people who have RA and other autoimmune diseases. 

My hope for this project is that I can let everyone know that there are a lot of younger people out there who are dealing with these chronic, often painful, illnesses.  Also, I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one.

Working on this project makes me feel like we are all in this together and that none of us has to go through it alone.

If you would like to participate and have me take your portrait, please e-mail me at jodimckeephotography@gmail.com.  Thanks!