Jodi McKee

Sjögren's Syndrome

Margery

Jodi McKee3 Comments

Name: Margery

Location: DeWitt, NY

Age: 53

Diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome at age 50.

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How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down.

Jennifer

Jodi McKee3 Comments

 
















 

 

 

 

 

 

 

 

 

Name: Jennifer
Location: New York
Age: 38
Diagnosed with Hashimoto's Thyroiditis at age 33, Sjogren's Syndrome with a small fiber peripheral neuropathy at 35, Systemic Lupus Erythematosus at 38

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How have your conditions impacted you?  My illness has completely changed the course of my life.  Because of arthritis and my peripheral neuropathy, I was unable to continue my job, just 1 year after I had finished a lifetime of training for that career.  I started my own business that gave me a flexible schedule to attend doctor appointments and rest as needed.  After a year, I went back to work part-time, while keeping my own business running.  Juggling the two is difficult, but I am definitely quite happy with my career at this point in my life.


The most difficult part of my illness is the effect that it has on my family.  My thyroiditis was undiagnosed during my pregnancy with my son and we nearly lost him at 19 weeks of pregnancy.  Fortunately, after many months of bed rest, he was fine.  But I developed one autoimmune disease after another in the years that followed.  My son has never known me to be well.  He is a very active boy and I HATE that I cannot keep up with him.  My husband is a wonderful single parent when I am out of commission.  I am grateful for that, but desperately wish that I could always be there when they need me.


What would you like for other people to know about your conditions?  When you develop one autoimmune disease, you are more likely to develop another in the future.  I feel like the poster child for this statement!  I would like people to keep this in mind if they are ever diagnosed with an autoimmune disease.  Not all doctors are astute enough to make the connection if you become ill in the future that this may be another autoimmune disease.   

What would you tell someone who is newly diagnosed with your condition(s)?  You are your best advocate.  If your physician is not answering your questions or spending enough time to listen to you, start looking for someone else and do not feel guilty about it.  My biggest mistakes in managing my health have been to trust doctors who were really not dedicated to my care.  These mistakes were serious ones that negatively affected my health for several years and almost caused us to lose our son.

It is also really important for you to figure out what your insurance will and will not cover.  I have had 4 different health insurance plans since my diagnosis.  Our previous HMO and PPO plans seemed fine until they did not cover necessary procedures and medications.  We spent thousands more than the maximum out-of-pocket amounts because of the expenditures they did not cover.  Ultimately, a high deductible plan that covers everything once the out-of-pocket amount has been met has been the best value for our family.  I know exactly how much to budget for my health insurance each year, and that has been a huge relief.  Being sick and paying for health insurance is hard enough.  Fighting for coverage is a battle patients should not have to wage.

Thanks so much Jennifer!

 

Kelly

Jodi McKee11 Comments

Kelly
Drexel Hill, PA
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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


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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!!