Someone asked me recently why I keep fighting. How is it that I find the energy or the motivation to go to another doctor’s appointment or try yet another medication? Why hasn’t the accumulation of nearly eight years of disappointment made me bitter or caused me to give up?
It’s an interesting question and one that I don’t have a clear answer to. But, a few things come to mind. First, one of my close friends in high school told me about her dad (shortly after hers had passed away.) He had diverticulitis and found out in his late teens. He had concluded that since he wasn’t going to live very long, he was just going to enjoy life. So he smoked and did drugs and didn’t take care of his body. And while he died fairly young, his daughter was in college when it happened. He spent most of his adult life suffering from the physical consequences of not taking care of his body. I remember her encouraging me not to be like her dad. Don’t give up Abigail, she said. Don’t spend your whole life waiting to die. Maximize the time that you do have. You’re so talented. Do something with that. Don’t be miserable your whole life. And that also means taking care of your body. Pursue medical treatment. Try to get help before you reach the point of no return. And be honest.
It was a strange conversation. But I remember it really well. Her words really made an impression on me. And the idea of her dad giving up when he was 19, only to live another 30 years seemed like a waste.
I think fear also plays a fairly big role as well. I so desperately want the illness to be under control our at least monitored. Then it’s not like I’ll be fighting on my own. And if something were to happen, I wouldn’t be at the mercy of whoever or whatever. It’s a way to fight for independence, a way to argue that I still have control over some part of my life.
And the last thing is that I’m a doer. I like to be successful at whatever I take on. I want to be the best that I can possibly be. This is particularly true in situations where I’m not there voluntarily. I might be a bad choice for a babysitter but I’m going to be the best babysitter I can possibly be. (I think that’s one thing that frustrated me about graduate school. I worked very hard, and I was excelling in the program. The ravenous lion acknowledged that, but to him it was irrelevant. He told me as much himself. And that was hard. Because it was a rejection of my primary yardstick.)
I’m still not sure why I’m the way that I am. I also know that some of my favorite physicians think I spend to much time and energy thinking about my illness or trying to get help. But these are at least some of my thoughts.
That, and how could I not? Sometimes I think that’s the more relevant question. I’m just making the best of an imperfect world.
It’s a really hard question for me to answer. I got sick around the same time I came of age. I first started noticing symptoms around my second to last year of high school but didn’t start seeing a physician until the summer between high school and college. It’s a period of life where a lot of things are changing. So, sure, illness changed a lot of what that looked like. But it’s hard to pinpoint exactly what’s different.
I’ve written about ways in which my illness has altered my life and my person before. But Lorna’s question made me reconsider what has stayed the same.
In one of my favorite movies, one of the minor characters explains that archaeology is more than just finding bones. She notes that people of the past left so much of themselves for us to find. While there are always a lot of gaps, she’s fascinated by what is left, by what endures.
That notion resonates in my heart a lot. It’s what remains that matters. That’s the core of who you are. Nothing and no one can take that away.
So here’s a list of things that I’ve noticed have stayed the same for me:
Writing letters: I love writing letters. When I was in junior high, I used to consider writing letters my ministry. I wrote to as many as 10 friends a month!! Now I’m part of a postcard swap on Ravelry, I write my friends who are missionaries twice a month, and I still write my grandmother once a month.
Quiet observer: I’ve always been the quiet observer. I’ve never been the loud person at the center of the conversation. But I’m taking in all sorts of context clues, so I remember lots of little details later. I can figure out what a person’s favorite color is by looking through pictures on facebook or find out if my cousin is engaged by asking the right people the right questions.
Listening: I love listening to other people tell their stories. I always have. In fact, I’m primarily an aural learner. That means it’s really easy for me to become friends with people who are talkers. It matches my love for history. It’s made me a great student, someone who can listen to doctors or friends or whoever. It also means I have a lot of empathy. And I am on the phone a lot!
Organized: I have always been extremely organized. I sort through information really easily. I always have numbered lists and I know how information is related to each other. I’m still extremely organized — just about different things than before.
Heart for people: I’ve always had a heart for people. When I was younger, it was my imaginary friends in primary school or the sick children I read about in books. Now I’m the girl writing to the young man injured in the Boston bombing or praying for her doctor’s child.
Sickness: I have never been interested in medical care. When I was in high school, I volunteered at a hospital because my parents made it sound like it was mandatory. I found the only place where I could avoid sick people altogether — Employee Health. It was all about making sure people were healthy!! But I’ve always had a huge heart for the afflicted. I’m not really sure why. But it definitely comes in handy now. Here are some of my favorite books from childhood: Curious George Goes to the Hospital by H.A. Ray; Born to Trot by Marguerite Henry (where the main character wants to ride a horse in the races but winds up in a convalescent home for children; my sister was obsessed with horses but Born to Trot was the only book by Henry that I read more than once); The Secret Garden by Frances Hodgson Burnett (where Colin “suffers” from a hunchback & Mary from neglect); The Five Little Peppers and How They Grew by Margaret Sidney (multiple characters in that book get very sick); Hitty: Her First Hundred Years by Rachel Field (at least one of the girls Hitty watches over gets sick). And my favorite part about Clara Barton was that she nursed her big brother David for two years until he regained all his strength.
Faith in God: My faith in God and His goodness has fluctuated over the years. But it hasn’t fluctuated with my health. I’ve always had the sense that even in the worst of scenarios, He’s providing for me. He may be hiding behind the scenes, but He always shows me that He is there.
Just a few things for me that have stayed the same through sickness and health,
I spent this weekend visiting old friends from the grad school days. (I love how far in the past that makes “grad school” feel!) Anyhow, it was quite an interesting trip. Lots of funny little tidbits. Here’s a few:
Want a cigarette? I’ve never really grown up around people smoking. But I was at the Catholic Worker House hanging out with an old roommate. She went back into the house to get something, and I struck up a conversation with the other guys hanging out on the porch. One guy saw that I was the only one not smoking and asked if I wanted a cigarette. No but thanks?
More tissues? In Dr. Mark’s office, he wanted to know why I hadn’t been able to find a general practitioner. When that somehow resulted in me tearing up, we continued our conversation with him periodically handing me another tissue and me just holding it for a few seconds and then putting it in my pocket. Is a tissue guy code or professional code for I’m-sorry-you’re-hurting-and-that-this-conversation-is-hard-for-you??
Crush-motivated activity? I attended a wedding of an old high school friend this weekend. The wedding was beautiful and amazing. But I got seated next to this guy at the reception. He was kind of being a jerk so I was making fun of him. (He thought it would be funny to burn his place card in the votive.) Well, apparently, he helped himself to my camera while I was away talking to the bride & groom (or their parents or grandparents) and took pictures of himself and his place card. Creepy much? Fortunately I know how to use the delete key on my camera and my memory.
A winner!! I accepted my first mystery shopping job which was to buy a bottle of wine & see if I was carded. I don’t drink wine so that was kind of tricky but I found the cheapest wine there was and bought a flavor that was served at the wedding. But my receipt was an even $15. Apparently at this grocery store (that I shop at all the time) that means cause for celebration. All the cashiers started cheering. And I got to spin the prize wheel. I won a reusable grocery bag!!! That totally made the whole shop worth it. (Now I just have to figure out what to do with a bottle of wine.)
That sweater? After all that work, I didn’t end up needing the sweater for the wedding. The weather was perfect for a sleeveless dress. At least I was prepared, right?
I have to say. I love shopping. It’s really relaxing for me. I love finding the perfect gift or the perfect dress or the perfect whatever. I’m on the road these days and I hit a few outlet malls. Here’s what I snagged.
1. I already purchased this beautiful dress from Emily & Fin. But I forgot that I’m wearing it for an outdoor wedding in October. Sleeveless is probably daring, especially for someone with fibro. So I needed something to go with it. I tried on a million sweaters in a million different colors and concluded that I don’t like big, baggy sweaters that look like potato sacks. Which means that I like semi-fitted clothes. Anyhow, finally, one clerk came up with a green sweater, which makes the dress. I would have never come up with it on my own but it’s the perfect shade to bring out the blue flowers without taking away from it. Otherwise, there was a grey sweater but it just toned down an already chill dress.
2. I found some really nice camis for just under $5 each. These come in super handy when clothes don’t fit because you have chest and breast inflammation. (Don’t ask me how I know.)
3. I found a super adorable top that I already have as a sleeveless shirt. I got it for only $12 as a short-sleeve black shirt!! Super cute.
4. I found a super amazing skirt that’s really well made. It’s a bit too big because (ahem!) someone keeps losing weight, but I’m pretty sure that I can alter it to make it fit. Plus it was 85% off. Who can pass up that deal???
5. I found a really cute bib set that I’m going to give to Grace for her baby. It will be perfect. And it was only $4!!
All in all, I had a blast!! Sorry I don’t have more pictures but that’s the downside of buying stuff from an outlet. No lookbooks!!! Next time. 🙂
P.S. I seriously almost bought a shirt like Pick #4 from last time. The only difference was that it was in a Cranberry color (much better for my skin tone) and cotton and still on pretty heavy on the pocket book!! So I passed.
I’ve been working a little bit as an independent contractor. And it’s been keeping me busy. All of a sudden I’ve had to deal with several bosses all at once. Also, I’ve had to deal with some ghosts of graduate school. It’s been kind of rough and pretty tiring.
I’m trying to remember to just be. And not to let anything get in the way of who I am. But it can be tough.
the pharmacy manager and the assistant pharmacy manager not only know you by name but remember what you’re taking and why.
I’m having a hard time finding legit doctors here in my home town. And by legit doctors, I mean someone who will see me for more than five minutes before he kicks me out the door.
Anyways, someone prescribed me a muscle relaxant for that ear pain that was bothering me. It helped a whole lot and actually gave me energy (?!?!?) But you’re not supposed to take it long term. So the next specialist was like, scrap that, take these steroids instead. They will really help bring down the inflammation.
So good patient that I am, I dutifully filled that prescription and started taking it. But it made me really lethargic and nervous and sensitive and incredibly stressed out. So it was pretty much undoing any good that it was doing and then some. So I wanted to stop taking it.
I drove to the local pharmacy and talked to the pharmacy manager. We talked through the whole thing and about how I always have the opposite of the symptoms that they tell you that you’re going to have. (Yeah, the muscle relaxant is supposed to make you tired. Hahahahaha.) We talked about options and about just stopping the steroids all together. And I have to say, it’s way easier to find a good pharmacist, someone who will actually pay attention and think for more than five seconds.
I have had my share of bad pharmacists who have said things like, uhhhh, did you read the brochure??? (yes, that’s why I’m asking this question) Or, you’re too young for menopause. (Uhhhh, okay, and how is that relevant?) And I’ve had them mix up prescriptions before. But I’ve also had some really good pharmacists.
You know they’re keepers when they remember you. And they don’t see you as that annoying girl who must be addicted to drugs because she comes in every few days. But rather than girl that we desperately want to help because she’s so nice and smart and young. Right?
It hit me today. I miss shopping. Like at the mall. Or at the outlet mall. When I was in grad school, I used to save up all this energy to go mall shopping about once a month. And I loved it!! I loved knowing what colors were in fashion, I loved having new clothes and being able to wear them (occasionally). I loved being part of a crowd and doing what everyone else was doing. I loved the satisfaction of finding a good deal.
Today I was paging through a clothing catalog and realized how much I miss shopping.* So I’m showing you my top picks from this catalog.
Pick #1: A Shawl Collar Sweater. This looks pretty for loungewear. It also looks like something that would be okay if you’re having extra breast inflammation (ahem). It’s in this fall’s colors: dusty pastels. It has long arms and it’s heavyweight which tends to be good for fibromyalgia.
Pick #2: Draped Neck Knit Dress. I don’t know if this would look good on me. It would definitely have to be for an indoor event with air conditioning or an early evening outdoor event. That’s when I need sleeves that are tight for the fibro pain but still giving me access to the breeze. This would definitely have to be for a good day since it’s fitted, but it’s only available in dark colors so it ought to be fairly forgiving.
Pick #3: Convertible Infinity Scarf Dress. This dress is awesome. I also have a thing for knit pullover dresses with A-line skirts. It comes with the belt. And the scarf is removable so you can do all kinds of cool things with it. I’ve always wanted an infinity scarf and now’s the perfect excuse. See #2 for the sleeve explanation. And the colors are black and plum heather are pretty forgiving. I’m not sure about the Toast. First, what kind of color name is that? And, second, I’m opposed to full body clothing that’s skin color. Just saying. Having the belted waist can be hard with digestive disorders but I find that the empire waist is flattering on me and that sometimes it helps to have a little bit of structure there.
Pick #4: Pleated Neck Blouse. Very adorable. I like clothing that’s comfortable and loose. There’s enough embellishment that it looks businessy. But it’s also comfortable. And can go with pretty much anything. The button closure might be a pain. In fact, it’s almost certain to be a pain. But I have long hair. And I can ask pretty much anyone walking down the street to close it for me. Plus, I like the color Very Berry. Let’s hope it looks good with my skin tone.
Thanks for joining me on this virtual shopping expedition. I hope you found it slightly entertaining. I know I had fun. Picking stuff out is half the fun. (The other half is actually wearing it!) Will I actually buy these clothes? Hard to say. Not sure I like any of them enough. But at least I know what’s in fashion.
From the heart,
*: I’ve also realized that I’ve done a lot of shopping for loungewear in the last few months. That can be fun. But it’s more fun to plan what to wear to work or to the symphony or to a wedding. After a while loungewear gets boring.