Living (Well!) With Illness
I’m 25 years old and I have health conditions. I was recently
diagnosed with Celiac Disease, even though the ‘average’ onset of CD
is more commonly diagnosed in women over the age of 40. Symptoms of
Rheumatoid Arthritis typically begin after the age of 40; I was
diagnosed with Juvenile Rheumatoid Arthritis, or JRA, at age 11. This
blog is about my personal struggles. Living with invisible autoimmune
conditions can be discouraging at times – but you don’t have to go
through it alone. Here, I will share my personal stories and thoughts,
as well as news on medical breakthroughs and ways to live well while
coping with illness. I’m also here to encourage dialogue about living
a happy, normal life – despite feeling sick at times. Like I said, I’m
25 years old and have health conditions. But they don’t have me.
Living (Well!) With Illness | 08/07/2009 11:00 pm
No, Not the Shoes!
Here’s the thing: I suffer from a third disease. This condition is called "Chronic Shoe Lust." Shoes are my sanctuary. And here’s my frustration: I don’t want to give up my cute shoes.
Sometimes, it is so hard to be reasonable. It can be especially difficult when you have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.
I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg. And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing heels, wedges, pointy-toed pumps and other variations of cute shoes.
Now, I’m a logical young woman. I follow my gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and don’t take on more than I can handle.
But I refuse to give up wearing cute shoes. Cute, painful, inconvenient shoes.
I know, I know. I’m "going to kill myself walking in those things." It’s "no wonder" I limp. I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.
Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of "it’s just the shoes," rather than a chronic illness with no end in sight. I also think it’s my pride. I want to hold on to any sense of normalcy I can since sometimes my life isn’t exactly that of a "normal" 25-year-old. Do I have to give up something that, as silly as it is, makes me happy?
I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, "regular" baked goods and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?
I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!
What do you think, reader? What have you sacrificed because of a health condition? Do you ever "cheat" and stray from what your doctor says, like I do with my shoes?
Sometimes, it is so hard to be reasonable. It can be especially difficult when you have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.
I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg. And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing heels, wedges, pointy-toed pumps and other variations of cute shoes.
Now, I’m a logical young woman. I follow my gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and don’t take on more than I can handle.
But I refuse to give up wearing cute shoes. Cute, painful, inconvenient shoes.
I know, I know. I’m "going to kill myself walking in those things." It’s "no wonder" I limp. I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.
Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of "it’s just the shoes," rather than a chronic illness with no end in sight. I also think it’s my pride. I want to hold on to any sense of normalcy I can since sometimes my life isn’t exactly that of a "normal" 25-year-old. Do I have to give up something that, as silly as it is, makes me happy?
I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, "regular" baked goods and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?
I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!
What do you think, reader? What have you sacrificed because of a health condition? Do you ever "cheat" and stray from what your doctor says, like I do with my shoes?
Read more about: Ashley Boynes, Celiac Disease, Chronic Illness, Fashion, Health, osteoarthritis, Rheumatoid Arthritis, Shoes, Style

























22 Reader Comments (so far…) Sign In or Register to comment
Have given up a lot of things but that is because, as I age, I can no longer tolerate a whole bunch of stuff. For instance, gave up smoking when I started to cough, got cancer anyway and with radiation that killed a salivary gland, gave up things like crackers and candy because they are dry and hard to chew and swallow. As for shoes, now that I am older, my feet swell up and I am more or less stuck with athletic shoes. Couldnt stand in a high heel anyway. So enjoy your twenty something self and wear those shoes with pride because some day your feet wont fit in them anymore and your toes will hurt if you try but you will have great memories.
Actually I gave up cute shoes about 20+ years ago. Gave up heels (of any height), pointy toes, and serious cuteness. I was not as brave as you in living with the pain. I worked almost my whole life trekking miles and miles on cement floors for my job. After a while the feet and knees started to go and I found wearing birkenstocks was the most comfortable way for me. Now all of this does not mean that I do not still seriously lust after shoes. Some of the syles today make me salivate - but I am a coward when it comes to the discomfort.
I agree with Judy K. —- wear those shoes and enjoy every minute of it!!!
Oh Ashley, I have walked in your shoes.
Actually, not exactly in your style of shoe. I was 28 when I was diagnosed with RA. For years I tried everything to find help short of visiting a witch doctor. But that was in 1960 not much available then to help with the pain. My feet and hands so swollen, they looked like the bones had vanished. I so longed for shoes, any shoe. All I could fit in and barely walk with were flip flops. I once even purchased men shoes in an extra wide then I decided not to wear them.
Ten years later the disease went into remission, the fingers and toes are still crooked and I do have knee problems. You are so young and have so much courage. I can understand why you love your shoes and I would be the last one to tell you to change.
James you made me laugh because right now I am taking water pills (Lasix) to reduce swelling in my leg and have to take potassium to countermand that and the beat goes on. Salt REALLY helps me retain water and affects my blood pressure also as one leads to another. So, enjoy your salt and sweets but take your blood pressure occasionally so you dont blow yourself out of the water with an unexpected stroke.
Water pills, Judy?? Don’t you know that water is free…you can just turn on a faucet and out it comes? (just kidding…hope you’re doing well…and my blood pressure’s always been extremely good, except when I coded for 4-1/2 minutes last year during ear surgery).
I’ve got PRS [Pack Rat Syndrome] when it comes to shoes. It’s the silliest thing - I must have close to 100 pair of shoes. Some of them are so old but in such good condition that I can’t bear to part with them. Some hurt like the dickens when I wore them, but what the heck? But I haven’t worn them for years, maybe decades.
So they sit in a storage vault and will never be worn again. Why not? I am addicted to Reeboks. I wear them all the time. My back never felt better since I "married" them. Til death do we part.
I have a pro-active relationship with my doctors. I KNOW what my body tolerates and what it doesn’t. I’m completely at ease in telling one doctor not to write a new prescription before he discusses it with me.
I’ve sacrificed plenty [see post about shoes] since I came down with autoimmune arthritis about 15 or so years ago. But I’ve gained a lot,too. I’ve learned how to be an expert in time management, I’ve learned to exercise EVERY day, rain or shine, and I’ve learned not to sweat the small stuff.
Judy, ha! Actually, my blood pressure had soared, and the heartbeat slowed to zilch. I remembered coming to, hearing and seeing the doctors scrambling, and I asked, "What’s going on?" And one of them said, "You had a cardiac arrest." Apparently, they pumped too much anesthesia into me (6 different medicines) and I had an allergic reaction to it. It happened 30 minutes or so into ear surgery, so the ear had to be closed up without the hearing loss being corrected.
Hope you stay well.
When I went back July 15, 2009, for the same surgery, I told them not to knock me completely out. The stapedectomy was painful at times, but I was fine by the next day. Hearing has improved in that ear, but not a lot yet.
I didn’t see any tunnels, lights or relatives. To me, it seemed like I merely had woken up, and was sore and groggy. Fortunately, no permanent damage was done.
Frankly, wearing shoes which are imperfect, almost harmful, but stylish is your thing, so don’t apologize and don’t regret. Since my 50s, I’ve had frequent multiple fractures, beginning with an automobile accident, to falls on streets, to the point that I can use my dominant left hand, but it’s had surgery twice, so I had to give up using a sewing machine (my former life long habit of making my own clothes), and now I have a twisted right wrist (after 3 major fractures), but I haven’t given up wearing jewelry, actually 4 rings (though my stiff & swollen fingers type this poorly and I have to make corrections all the time, and of course residual problems with arthritis after so many fractures), and I always always wear a bracelet on my right and an expandable watch on my left.
Call me, Gypsy, or whatever, my morale is high when I finish dressing and choose my baubles. Shoes, I admit, are daunting, because I’m a city walker, so it’s low heels/flats/wedgies for me, but I do understand your need to wear what is beautiful to you, so continue to cope with medical issues (we can’t escape, can we?}, and enrich your life with great shoes, or whatever pleases you.
I, too, lived my life in high heel shoes. Pointy shoes, strappy shoes, wedgies, you name it. I paid the price: surgery on the little toes on both feet to correct toe nails that were ingrown and caused severe pain. The surgery affected nerves and you have no idea how many nerves are in those little toes. To this day, they do remind me of my folly. My little toes are also what is called hammer toes and the podiatrist is itching to "correct" that. I plan to "take them with me". My arches fell and a podiatrist told me when I was in my 40s that I needed to wear orthopedic shoes with inserts. I erased that doctor from my list and instead, looked for shoes that were comfortable to wear. I have narrow feet, which are hard to fit these days when most shoes come from China in medium width and, if they are marked "Narrow", the last is not adjusted for a narrow heel. There were two brands who made perfectly sized narrow shoes: Selby (USA) and Ferragamo (Italy). Expensive, but reliable. I wore those a lot. Now my high heels, just like those you see in all the fashion magazines (fashion, you know, recycles every 20 years or so) are history. I pay the higher price for shoes that fit (mostly have to order them from catalogs because department stores and most shoe stores don’t stock narrow width). Still, I refuse to wear athletic footwear, those clunky lace-ups that bring women down to the jock level; but I do find cute, stylish, comfortable shoes for which I end up paying retail prices.
I learned all the damage that high heel, pointy shoes cause when I interviewed podiatrists to write an article about it in the early 70s. When you wear the Choos, Lubotins, Chanels, and all the others, you are risking spine problems (I have stenosis of the lower spine now), knee problems, ankle problems, and you’re taking numerous risks that will injure the multitude of bones that comprise the feet on which we support the rest of our body. If you ask me, to risk that for the sake of sexy locomotion, is just plain loco. But then who’s going to tell a woman that and have her believe it? Shoes are a dangerous addiction, but oh, it makes you look so fine. Until you get older and pay the price with the inability to walk without pain. Now I look at the shoes in the stores and the fashion magazines as instruments of torture. We should love ourselves more than to submit to that.