Broken Spined Sneakers
One of our members invites you to walk a mile in her shoes:
Q: Age of Onset or start of symptoms?
A: Hard to say. My pediatrician diagnosed me with JRA at 9! But as an adult, onset was at 33.
Q: Age of diagnosis?
A: Again, as a child, JRA at 9. But as an adult…CFS at 33, lupus at 35, Sjogrens at 36, and RA at 49.
Q: Where are you located?
A: Spring, Texas
Q: What is your profession?
A: I used to be a licensed specialist in school psychology. I now do some writing and occasionally paint religious icons.
Q: What are your medical conditions or diagnoses?
A: Allergies (yeast, mold, and fungus…those are both airborne and food allergies…cats, possibly latex, and definitely tree pollen) Asthma. Sjogren’s Syndrome, which is probably primary, with RA symptoms (that’s according to the latest theory from my rheumatologist). Hypoglycemia. GERD. Hypothyroidism.
Q: What are your hobbies?
A: Crocheting (easier on my hands than knitting by quite a bit). Music, reading, my dogs, iconography. Being Meemaw to my almost 9-months old grandson!
Q: What is one thing your doctor didn’t tell you about your Autoimmune Arthritis that you wish they had?
A: That diagnosis is a process. My adult issues with autoimmune arthritis began when I had a horrible case of mono; took most of a year to get better. After that, it was one diagnosis after another as the thing progressed. What started as JRA is now labelled (and I think correctly so) as primary Sjogren’s Syndrome with symptoms of RA and Reynaud’s. But it’s not like going in and finding out “do I have pneumonia” or “do I have strep”. There are often no quick and easy answers. Back when I was first struggling with this, I thought that was because the doctors just didn’t care enough to do what needed doing to find out what it was. Now I realize that the autoimmune system is profoundly complex and that the disease process may change over time. Maybe what they really should have told me is “it’s going to be a long ride, but we will treat your symptoms and stay on top of it and we do care.”
Q: If you could tell your past self something before diagnosis, what would it be?
A: This will be hard, but it will not kill you. This is going to hurt, but pain will not kill you and you will learn to live with it and you will have a good life. Have faith and don’t be afraid.
Q: What would you like to tell others newly diagnosed with Autoimmune Arthritis?
A: Build a good support system. Not just one person, either! My husband is my main support, no doubt about it, but he can’t be all of my support, especially when I’m hurting. When I was younger and my kids were little, I let them help, I didn’t shield them from it and they benefitted by being part of that. They didn’t carry my emotional distress (at least I tried not to burden them with that) but a support system also means physical support, household help, things that make you laugh (and LAUGHTER IS IMPORTANT!!!) and stuff…and kids are good at those. Don’t give up. Your life will be different but it isn’t over unless you lie down and quit. Oh…and if someone cannot support you, that’s ok. Doesn’t mean you cut them out of your life, unless they’re actually toxic to you and really drag you down. But don’t expect more from people than they can give. Accept yourself, accept others. All will be well.
Q: How would you describe your personal style?
A: Casual! I have to wear sneakers most of the time for my messed-up feet, although I “break the spine” of the shoes because they’re so bad (the feet, not the shoes). Otherwise, it’s cowboy boots or sandals, though I do love (but cannot wear) really high heels.
Q: What part of dealing with your Autoimmune Arthritis has made the biggest impact on you?
A: I always have a messy house 🙂 I don’t have a big house….it’s less than 2000 sq. ft. but I can’t keep it clean like I should. And I say “should” from the standpoint of my asthma. I’ve had to learn to accept the clutter and messiness because I run out of “spoons” (energy) regularly. I guess it’s dealing with limits that are way more restricted than I’d wish, and learning to accept that things are what they are but that all will still be well.
Q: Favorite quote?
A: “If a thing seems to be too good to be true, best to shoot it. Just in case.” Fiona Glenanne, Burn Notice. And “I can’t hear you! Don’t fire the gun while you’re talking!” Leslie Nielsen, The Naked Gun.
Q: What are three random things about yourself that others may not know?
A: I got to square dance with my group at old Busch Stadium back when I was about 12, in between games of a Cardinals double-header. I got to have dinner several years ago in Milan at a fabulous restaurant right across the street from La Scala. And I am a very, very good shot with a rifle when I deer hunt.
Thank you for walking a mile in my shoes!
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