Name: Lori
Location: Ronkonkoma, NY
Age: 44
Diagnosed with Rheumatoid Arthritis in 2001. Also suffers from Fibromyalgia.
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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!
6 comments:
always inspiring!
it sounds like she's had such a hard road... which makes it even more amazing how hopeful and happy she seems. and that quote is really cool! :)
--elizabeth
I think coming out to P Town and lovingly taking care of 4 nieces and nephews is quite the accomplishment!!! We are so grateful for the beauty that is you and the gift of yourself you share with ALL of your family. Love ya!
Joanie
Hi Lori. I loved reading this, "Empowering them makes us all feel better." Giving up control can be one of the hardest things to do when faced with disease but also the most rewarding. Like you I have an absolutely wonderful family and seeing how strong they can be is amazing. Thanks for sharing.
Thank you for your comments. Cathy - keep rockin'!
Does anyone else have a favorite quote?
First and foremost, yay! You're not in the dark anymore, and that's half the battle. Secondly, don't get discouraged. Although it might be hard to not beat yourself up over the ups and downs (it took going through an entire category of medications, endless rounds of physical therapy, multiple casts, different specialists, and finding a drug that wasn't even FDA approved back in 2003, for me to find something that gave me relief and stopped the progression of things), do the best that you can do, and give yourself a break. After you have a chance to process, well - everything - decide how you're going to treat this new aspect to your life. You don't have to suffer alone, and it's okay to ask for help. It also doesn't have to be a constant demon, as you'll get to know your body and yourself in a much deeper way than most people. Take advantage of this, as it will help you appreciate similar qualities in others - although you might not want to share things at first. I'm still coming to terms with openly talking about everything, but I'm also learning that that's okay. You'll come to notice who really sticks around, and who offers to carry that extra heavy bag. Or maybe, someday you'll be able to carry that heavy bag yourself, and these little things are the things that matter. :)
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