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!  

Betsy

Name: Betsy
Location: Rochester, MN
Age: 32
Diagnosed with Ankylosing Spondylitis at age 31

*******

How has your condition impacted you?  It's still hard for me to take in that Spondylitis is something I have, and am going to have to deal with going forward. I was in denial for quite some time. I hoped that I was just misdiagnosed again. It has only been recently that I have come to a point of acceptance and understanding to tell people outside of my intimate circle of friends and family. I am learning who my true friends are and that not every one can handle my new reality. I am learning that I have to create balance in my life and carefully choose how I spend my energy. I am constantly working to reframe my grief for the things I cannot do, but instead look for new ways to find joy. My condition really has impacted how I view and prioritize my life, more than the obvious physical obstacles. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am stiff in the morning and quite fatigued, which is difficult as a mother of 2 young boys.

What would you like for other people to know about your condition?  First, if you have not heard of this disease check out the following website to learn the basics: www.stopas.org. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis, which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow progression or even bring a cure.

What would you tell someone who is newly diagnosed with your condition?  There is hope. There are many approaches to treating this disease.  I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with.

I am a mother of 2 young boys and was unable to accept the textbook answers I was getting from the first rheumatologist I saw. I was uncomfortable with a symptoms based approach. So I did my research, looked at clinical trials, read endless scientific journal articles, and found a rheumatologist who had the approach I desired, to treat the disease systemically and try to slow or halt progression. There are endless treatment and lifestyle choices to explore.

When I shared my diagnosis with my aunt, she sent me a beautiful note. I hope this excerpt helps you as it has aided me in staying grounded on even the most painful days, “I believe that God gives us life with a purpose attached. And that purpose, whatever it may be for each of us, still remains no matter the circumstances. And sometimes difficult circumstances can even bring our purpose into sharper focus.”

Thank you so much Betsy!!

(And thanks to Maya for introducing us!)