10.24.2012
Handling Life in the Midst of Chronic Illness
I’m spending the week with one of my closest friends, so I’ll have to ask you to forgive my absence. It’s been a whirlwind already but one of the best times I’ve had in a long while. It’s been amazing and I’m loving it so much.
In the meantime, my fibromyalgia does not let up when I have company—if anything, the symptoms are even more unfortunate when I do have friends over. I’ve already had a splitting headache once, last night, and today I’m feeling very fatigued. I’m on a new medication that has a side effect of sleepiness and dizziness, and those side effects hit especially hard today. Despite this fact, I just got done having immense fun outside with my friend and siblings—doing a photo shoot and making amateur videos. It was great fun, but now I’m beat.
One of the things I’ve been working on is being more open and honest with my friends when I do feel awful, and so far it’s paid off well. It means the world to me to have my friend understand and know that I’m not feeling well. Even if she can’t feel my pain, at least she knows about it, and can help share the burden. It’s a beautiful thing, and honesty really does seem to be the best policy. It never fails to shock me how understanding and supportive people can be if I just tell them what I’m going through.
So here’s a question or two for you: how do you do your best to enjoy life amidst the pain? Have you found that being honest about your pain or symptoms has yielded good results?
10.18.2012
The Battle & the Beauty
“We are cups, constantly and quietly being filled. The trick is knowing how to tip ourselves over and let the beautiful stuff out.”
-Ray Bradbury
Whew. What a start for this blog.
The encouragement and outpouring of support from you guys has been incredible and unexpected. Thank you. Thank you so much. It means the world to me that you already like this blog and want to see it succeed—after all, I do too.
Tuesday was a flurry of excitement as I started the blog and had inspiration bursting out of my veins and onto the screen. It was amazing. After months of lying dormant, my creativity was awakened. I accomplished something.
But now I’m kind of in a rut. It’s the letdown after a huge rollercoaster high of amazing comments and likes and pageviews and getting to hear all of your stories. But now I’m just like… now what? Where do I go from here?
I have so many ideas, so many thoughts, and I don’t know where to begin. I could talk about my doctor’s appointment earlier today, which, while it answered a lot of questions, it also created more. I could talk about fatigue, and how my energy levels are low a lot of the time, and how much that affects daily life. (Seriously. It sucks.) I could talk about the common misconception that because I look perfectly healthy, that I am perfectly healthy. (Insert deadpan sarcasm here: that couldn’t be farther from the truth.) I could talk about how my inclination is to fake it, but how I’ve been learning to be more honest.
But no. Tonight I’m just going to say thank you. Thank you for reading. This blog has helped me in many ways. As the quote above says, it’s helped me tip myself over and let the beautiful things out. It’s given me purpose in the midst of my suffering and my pain.
The amount of people who talked to me about this blog was astounding. I literally did not expect so many of you to like the idea and actually follow along with it. I thought this blog would have 2 followers, max. I thought I was alone in my chronic illness. Little did I know—I’m not.
It blows my mind that in my honesty I’ve sparked you to be open about your stories too. It is an incredible honor to hear your stories. I don’t say that lightly. It means so much to me that you are opening up about that… because of me? What? I don’t even know what I’m doing.
But God does.
So thank you.
And I also want to say something else. You are incredibly brave people, because you have your own battles, too. Just because your battle is different or seemingly less extreme than mine doesn’t mean it isn’t hard. At the end of the day, you are you, and you’re stumbling through life just like the rest of us. Please don’t think that because you don’t have multiple health issues or debilitating pain doesn’t mean your pain isn’t real. Because it is. And you’re welcome here.
Please. Grab a cup of coffee. Curl up on the couch, and tell me your story. It was meant to be told.
10.17.2012
My Thorn :: A Guest Post by Ashley
I don’t talk about it much online, and I really don’t have a true reason, other than, I honestly don’t think about it much anymore.
But, a dear friend (Oh how much more she has gone through) sparked the inspiration to talk about my thorn.
Bursitis is a condition where the padding in your joints (called Bursea) becomes inflamed. It’s pretty painful at times. Thankfully, it isn’t an all the time ache (Thank the Lord) but when it does, it can get pretty crippling. I’m not going to go into much detail over it, except, that when you can’t run, or be terribly active because otherwise, your knees feel like they are about to crumble, and make you fall, you feel....awkward. It’s no fun having to sit out at your brother’s 5K races, and tell everyone “I don’t like running” when, there is nothing you;d like more then being able to try at least once. When all your friends try goading you into running on Thursday nights with them, and you can’t, because you know all to well how your knees will put up with that, it hurts.
I try not talking about it too much, because, the less I talk about it, the less I notice it. I might get my times when I seem to do nothing except complain about the pain (Thank the Lord for a Mum who listens to my sniveling), but I’d rather not have to pain to complain about.
I also get phantom pains in my neck and back (We have no idea why. It just hurts bad enough to make me wish I was bedridden). And I can’t remember when I ever got a normal headache instead of a migraine.
My point is, I hurt a lot. I hurt and don’t notice it. And, sometimes, the pain is comforting, sometimes I use it as a crutch. ’I can’t exercise, If I put to much pressure on my knees, I might push them to hard, and end up sitting in a ball, clutching them and crying’ I’ve thought. It’s true, I have to be careful on how I deal with my knees, I need to be careful to only wear high heels when I HAVE to (Or, when I am prepared to be in serious pain during and afterward. Does anybody realize how BAD heeled shoes are for your knees?!?!) and I have to be careful not to overdo it, but there is nothing keeping me from taking a brisk walk. A 5K, not so much, but a walk isn’t going to kill me.
I’ve wondered about surgery for my knees, but my family changed our diet, and it helps. It hasn’t cured, there is no cure, but it helps. I don’t spend as many nights crying and wishing my legs could just be cut off. And, I’ve learned how to deal with and block out most pain. There have been some times, I’ve taken so many pain meds, I’ve scared my EMT Daddy, but I’m able to block most pain out.
Through it all, I’ve learned a couple things I never would have learned.
One) I can deal with a lot more than I thought I could. I’m a wimp when it comes to pain. Always have been, probably always will. But, when I hurt the most, I always end up thinking, "It’s not so bad. It could be worse" It’s taught me to be a little bit tougher then I was before.
Two) It’s taught me to sympathize. When you are in pain, nothing is more comforting then someone who has ‘been there before’. Sure, comfort from anybody is welcome, but it always means more when someone knows how you feel, I can do that now. Even if I don’t have it as bad as others.
And Three) It’s taught me, strangely, that someone always has it worse then you. I don’t know how, or why I’ve learned this, but it has. I’ve learned that I might hurt, but I never have it the worst. Even when I’m crying and complaining to you, I know this. It IS in fact possible to complain without meaning the complaints. XD
And, of course, it’s taught me simple stuff, like, which Pain reliever my body excepts best, the best way to lay flat on your back, how much neck elevation will give me a killer neck ache come morning, which shoes are best on your knees, and other stuff like that.
Again, I don’t have it as bad as others, I won’t claim to have any great and terrible illness. I know how to sorta control mine, and it can be kept under wraps as long as I eat well, and don’t put any strain on my knees (I don’t know how to control my migraines and neck/back aches...but they don’t hurt all the time anyway). But, each person has their own battle. Just because ours isn’t as big as someone else’s doesn’t mean it still isn’t our own battle and thorn. We each have the weakness of body, and we each have the ability to kick that weakness’ butt.
But, a dear friend (Oh how much more she has gone through) sparked the inspiration to talk about my thorn.
I have Knee Bursitis.
Bursitis is a condition where the padding in your joints (called Bursea) becomes inflamed. It’s pretty painful at times. Thankfully, it isn’t an all the time ache (Thank the Lord) but when it does, it can get pretty crippling. I’m not going to go into much detail over it, except, that when you can’t run, or be terribly active because otherwise, your knees feel like they are about to crumble, and make you fall, you feel....awkward. It’s no fun having to sit out at your brother’s 5K races, and tell everyone “I don’t like running” when, there is nothing you;d like more then being able to try at least once. When all your friends try goading you into running on Thursday nights with them, and you can’t, because you know all to well how your knees will put up with that, it hurts.
I try not talking about it too much, because, the less I talk about it, the less I notice it. I might get my times when I seem to do nothing except complain about the pain (Thank the Lord for a Mum who listens to my sniveling), but I’d rather not have to pain to complain about.
I also get phantom pains in my neck and back (We have no idea why. It just hurts bad enough to make me wish I was bedridden). And I can’t remember when I ever got a normal headache instead of a migraine.
My point is, I hurt a lot. I hurt and don’t notice it. And, sometimes, the pain is comforting, sometimes I use it as a crutch. ’I can’t exercise, If I put to much pressure on my knees, I might push them to hard, and end up sitting in a ball, clutching them and crying’ I’ve thought. It’s true, I have to be careful on how I deal with my knees, I need to be careful to only wear high heels when I HAVE to (Or, when I am prepared to be in serious pain during and afterward. Does anybody realize how BAD heeled shoes are for your knees?!?!) and I have to be careful not to overdo it, but there is nothing keeping me from taking a brisk walk. A 5K, not so much, but a walk isn’t going to kill me.
I’ve wondered about surgery for my knees, but my family changed our diet, and it helps. It hasn’t cured, there is no cure, but it helps. I don’t spend as many nights crying and wishing my legs could just be cut off. And, I’ve learned how to deal with and block out most pain. There have been some times, I’ve taken so many pain meds, I’ve scared my EMT Daddy, but I’m able to block most pain out.
Through it all, I’ve learned a couple things I never would have learned.
One) I can deal with a lot more than I thought I could. I’m a wimp when it comes to pain. Always have been, probably always will. But, when I hurt the most, I always end up thinking, "It’s not so bad. It could be worse" It’s taught me to be a little bit tougher then I was before.
Two) It’s taught me to sympathize. When you are in pain, nothing is more comforting then someone who has ‘been there before’. Sure, comfort from anybody is welcome, but it always means more when someone knows how you feel, I can do that now. Even if I don’t have it as bad as others.
And Three) It’s taught me, strangely, that someone always has it worse then you. I don’t know how, or why I’ve learned this, but it has. I’ve learned that I might hurt, but I never have it the worst. Even when I’m crying and complaining to you, I know this. It IS in fact possible to complain without meaning the complaints. XD
And, of course, it’s taught me simple stuff, like, which Pain reliever my body excepts best, the best way to lay flat on your back, how much neck elevation will give me a killer neck ache come morning, which shoes are best on your knees, and other stuff like that.
Again, I don’t have it as bad as others, I won’t claim to have any great and terrible illness. I know how to sorta control mine, and it can be kept under wraps as long as I eat well, and don’t put any strain on my knees (I don’t know how to control my migraines and neck/back aches...but they don’t hurt all the time anyway). But, each person has their own battle. Just because ours isn’t as big as someone else’s doesn’t mean it still isn’t our own battle and thorn. We each have the weakness of body, and we each have the ability to kick that weakness’ butt.
I might have Bursitis, but I won’t let Bursitis have me.
—
10.16.2012
In Which I Spill the Beans :: My Life Story
Pain. It’s a warning. A flash of red against your eyelids, a stabbing sensation in your thigh. It’s what you feel when you stub your toe or when you hit your head on the doorway because you’re a 6’7” basketball player. Pain is what your body does when there’s something wrong.
And it’s what I experience every day.
But first, let me back up sixteen years. I was born. (Duh.) But the circumstances leading up to it are… intense, to say the least. If you were watching a movie of my life, I think you’d most likely be on the edge of your seat. At least, I’ve been on the edge of my seat for my life.
My parents almost lost me twice; the first when my mom started bleeding during the pregnancy, and the second time happened when I was (trying) to come out and be born into the world. Oh, and there was actually a third time, which happened when I had to have heart surgery at only two days old.
But I made it through. Fast forward to the present day. Remember my lovely metaphors for pain at the beginning of this post? Well, it just so happens that I’m well acquainted with the wonderful thing. In fact, I don’t think I can remember a time where I didn’t have pain.
I’ve had headaches ever since I can remember, though they started becoming very noticeable when I was 7. It took us a long time to figure out what was wrong. I went to so many doctors, more doctors than I can count. Some of them helped. Some of them didn’t. Some of them told me things about how messed up my body was that wounded me deeply.
After a long period of waiting, I was diagnosed with fibromyalgia two years ago, in March of 2010. Ever since then, it’s been tough. Really tough. I have doubted God, I have questioned Him. I have been insanely low and yet I have also been insanely happy. It’s a roller coaster.
Lately, we’ve had more health issues crop up and it’s back to where I was when I was 7—searching for answers. Currently I’m in the midst of what feels like a million doctor’s appointments as we try to figure out what’s wrong with me.
Headaches are my main symptom. Along with that comes jaw pain. This flared up really badly in December of 2011. In February of 2012, I had my first orthodontic consult which told us that I had a major jaw misalignment. Who knew, right? Many months and a lot of ups and downs later, I’m now wearing braces to correct this problem. Despite this fact, my jaw problems are not completely resolved and I am still sadly on a mostly-liquid diet as of late until I adjust.
I also have PCOS—polycystic ovarian syndrome. Out of all of my conditions, this is the one I understand the least. All I know is, it made my periods comparable to methods of medieval torture. I’m now on medication to help this, and thankfully things are much better with that.
Two months ago, on August 22nd, I started having inexplicable itching. After no answers and a few unbearable weeks, my chiropractor suspects it’s a yeast overgrowth. To combat this, I am now on a no-sugar diet. I’m not going to lie, it’s insanely hard. For me, before all this happened, food was a comfort in the midst of my pain—it encouraged me and helped me get through each day. I looked forward to each morning because I could have a strawberry Greek yogurt cup. Now? I eat sour yogurt with cinnamon. Yum. I’m also off of milk and wheat, so because of these dietary restrictions as well as my jaw pain, I’m very limited on what I can eat. The things I eat now are gluten-free oatmeal, Mighty Tasty hot cereal, squash, and protein shakes. Sounds glamorous, right? …Not.
In addition to this, I recently found out that I have a glucose intolerance—or, basically, pre-diabetes. Thankfully, we were already on a low-sugar diet, so there won’t be as much adjustment there. And I have struggled with my blood sugar all my life, so it’s not too big of a deal. But it’s one more diagnosis, one more condition to add to my list. One more thing that makes me feel like I’m messed up and less-than-human.
In the past few months alone I’ve had more doctor’s appointments than I can keep track of.
— I got braces on September 21st, which created more pain in my mouth than I would care to experience. (The worst part? Getting the wires tightened. GAHHHH.)
— Once my mouth finally had adjusted to that, I got an extra tooth pulled, which sent me into a fibro flare (those with fibro or other chronic pain conditions will likely understand what I mean by that).
— I went to the endocrinologist, where I found out about my glucose intolerance and also got a handy dandy blood sugar meter to prick my finger with and monitor my levels. (Free stuff for the win!)
— Yesterday I went to the gynecologist to monitor my PCOS, which is doing fine—yay for improvement on at least part of my life! (However, my sanity suffered after that—try being stuck in a claustrophobic room while feeling like crap while two kids are crying and miserable and all you want to do is cry and be miserable, too. …Yeah. You’ve been warned.)
— After that, I went to the chiropractor, where I have been put on even more supplements to try to help me. (You should see my supplements collection, and the sheer amount of pills I have to take each day. It’s ridiculous. Some people collect paperclips… I collect pills. No big deal.)
— I had a sleep apnea test last month where they attached random wires to my head and I dreamed about Doctor Who and bow ties. This week, I’ll get to find out the results of this test. (I’m crossing my fingers that I don’t have to add another condition to my list. One can only hope.)
It’s getting to the point where I’m so confused about which doctor I’m going to next. Before my gynecologist appointment yesterday, I wondered, “do I have to brush my teeth really well before this appointment?” Uh… no. Wrong doctor, dearest.
My mom is great. Last night she let me just pour out all my troubles to her—and as I talked, I realized that I am simply overwhelmed. This is so much to take, especially all at once. I’m stressed. I’m tired. I’m depressed. I’m… sick and tired of being sick and tired. I simply want to feel better already, dang it!
But, in the midst of all this, there are some positives. It’s fall now, and I love fall. It’s October, which means that November is just around the corner, and so is NaNoWriMo. NaNoWriMo, in short, is where you attempt to write 50,000 words in a month. For a writer like me, this is a huge deal. I just eat it up and it majorly brightens my life.
Those doctor’s appointments I mentioned also brought good tidings of great joy that shall be to all people—I’ve lost weight. At least seven pounds, depending on which scales are of the utmost correctness. I’ve been trying to lose weight for a while, so that’s very, very good. It could be due to the fact that I’m barely eating anything due to jaw pain… but ahem, ahem, let’s not go there.
And the best thing of all? In the midst of this loneliness and isolation, I have a dear friend coming out to stay with me in five days. (Georgie Penn, anyone?) She’ll be here for a week and I am absolutely stoked. I haven’t seen her in 2 years and this will be the most time we’ve spent together, ever. Simply put? This will be a huge blessing.
So life is crazy sometimes… actually, all the time. At least for me right now, anyway. It's not all good, but it's not all bad. This quote about sums it up:
“The way I see it, life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa the bad things don’t always spoil the good things and make them unimportant.”
And it’s what I experience every day.
But first, let me back up sixteen years. I was born. (Duh.) But the circumstances leading up to it are… intense, to say the least. If you were watching a movie of my life, I think you’d most likely be on the edge of your seat. At least, I’ve been on the edge of my seat for my life.
My parents almost lost me twice; the first when my mom started bleeding during the pregnancy, and the second time happened when I was (trying) to come out and be born into the world. Oh, and there was actually a third time, which happened when I had to have heart surgery at only two days old.
But I made it through. Fast forward to the present day. Remember my lovely metaphors for pain at the beginning of this post? Well, it just so happens that I’m well acquainted with the wonderful thing. In fact, I don’t think I can remember a time where I didn’t have pain.
I’ve had headaches ever since I can remember, though they started becoming very noticeable when I was 7. It took us a long time to figure out what was wrong. I went to so many doctors, more doctors than I can count. Some of them helped. Some of them didn’t. Some of them told me things about how messed up my body was that wounded me deeply.
After a long period of waiting, I was diagnosed with fibromyalgia two years ago, in March of 2010. Ever since then, it’s been tough. Really tough. I have doubted God, I have questioned Him. I have been insanely low and yet I have also been insanely happy. It’s a roller coaster.
Lately, we’ve had more health issues crop up and it’s back to where I was when I was 7—searching for answers. Currently I’m in the midst of what feels like a million doctor’s appointments as we try to figure out what’s wrong with me.
Headaches are my main symptom. Along with that comes jaw pain. This flared up really badly in December of 2011. In February of 2012, I had my first orthodontic consult which told us that I had a major jaw misalignment. Who knew, right? Many months and a lot of ups and downs later, I’m now wearing braces to correct this problem. Despite this fact, my jaw problems are not completely resolved and I am still sadly on a mostly-liquid diet as of late until I adjust.
I also have PCOS—polycystic ovarian syndrome. Out of all of my conditions, this is the one I understand the least. All I know is, it made my periods comparable to methods of medieval torture. I’m now on medication to help this, and thankfully things are much better with that.
Two months ago, on August 22nd, I started having inexplicable itching. After no answers and a few unbearable weeks, my chiropractor suspects it’s a yeast overgrowth. To combat this, I am now on a no-sugar diet. I’m not going to lie, it’s insanely hard. For me, before all this happened, food was a comfort in the midst of my pain—it encouraged me and helped me get through each day. I looked forward to each morning because I could have a strawberry Greek yogurt cup. Now? I eat sour yogurt with cinnamon. Yum. I’m also off of milk and wheat, so because of these dietary restrictions as well as my jaw pain, I’m very limited on what I can eat. The things I eat now are gluten-free oatmeal, Mighty Tasty hot cereal, squash, and protein shakes. Sounds glamorous, right? …Not.
In addition to this, I recently found out that I have a glucose intolerance—or, basically, pre-diabetes. Thankfully, we were already on a low-sugar diet, so there won’t be as much adjustment there. And I have struggled with my blood sugar all my life, so it’s not too big of a deal. But it’s one more diagnosis, one more condition to add to my list. One more thing that makes me feel like I’m messed up and less-than-human.
In the past few months alone I’ve had more doctor’s appointments than I can keep track of.
— I got braces on September 21st, which created more pain in my mouth than I would care to experience. (The worst part? Getting the wires tightened. GAHHHH.)
— Once my mouth finally had adjusted to that, I got an extra tooth pulled, which sent me into a fibro flare (those with fibro or other chronic pain conditions will likely understand what I mean by that).
— I went to the endocrinologist, where I found out about my glucose intolerance and also got a handy dandy blood sugar meter to prick my finger with and monitor my levels. (Free stuff for the win!)
— Yesterday I went to the gynecologist to monitor my PCOS, which is doing fine—yay for improvement on at least part of my life! (However, my sanity suffered after that—try being stuck in a claustrophobic room while feeling like crap while two kids are crying and miserable and all you want to do is cry and be miserable, too. …Yeah. You’ve been warned.)
— After that, I went to the chiropractor, where I have been put on even more supplements to try to help me. (You should see my supplements collection, and the sheer amount of pills I have to take each day. It’s ridiculous. Some people collect paperclips… I collect pills. No big deal.)
— I had a sleep apnea test last month where they attached random wires to my head and I dreamed about Doctor Who and bow ties. This week, I’ll get to find out the results of this test. (I’m crossing my fingers that I don’t have to add another condition to my list. One can only hope.)
It’s getting to the point where I’m so confused about which doctor I’m going to next. Before my gynecologist appointment yesterday, I wondered, “do I have to brush my teeth really well before this appointment?” Uh… no. Wrong doctor, dearest.
My mom is great. Last night she let me just pour out all my troubles to her—and as I talked, I realized that I am simply overwhelmed. This is so much to take, especially all at once. I’m stressed. I’m tired. I’m depressed. I’m… sick and tired of being sick and tired. I simply want to feel better already, dang it!
But, in the midst of all this, there are some positives. It’s fall now, and I love fall. It’s October, which means that November is just around the corner, and so is NaNoWriMo. NaNoWriMo, in short, is where you attempt to write 50,000 words in a month. For a writer like me, this is a huge deal. I just eat it up and it majorly brightens my life.
Those doctor’s appointments I mentioned also brought good tidings of great joy that shall be to all people—I’ve lost weight. At least seven pounds, depending on which scales are of the utmost correctness. I’ve been trying to lose weight for a while, so that’s very, very good. It could be due to the fact that I’m barely eating anything due to jaw pain… but ahem, ahem, let’s not go there.
And the best thing of all? In the midst of this loneliness and isolation, I have a dear friend coming out to stay with me in five days. (Georgie Penn, anyone?) She’ll be here for a week and I am absolutely stoked. I haven’t seen her in 2 years and this will be the most time we’ve spent together, ever. Simply put? This will be a huge blessing.
So life is crazy sometimes… actually, all the time. At least for me right now, anyway. It's not all good, but it's not all bad. This quote about sums it up:
“The way I see it, life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa the bad things don’t always spoil the good things and make them unimportant.”
- Doctor Who, Vincent and the Doctor
Welcome to Spill the Beans!
Welcome to Spill the Beans! It isn’t much yet, but I’m working on it.
The purpose of this site is simple: to serve as encouragement and community for teens with chronic pain or other chronic illnesses. I personally have fibromyalgia, so this blog will tend to focus on that more than anything else. However, I don’t want to limit this blog to just fibromyalgia or even just chronic pain. This blog’s focus is that, yes, but let’s face it: having ANY chronic illness when you’re a teenager can be an absolute pain in the butt. I’m here to tell you that you’re not alone, and hopefully you can remind me of that from time to time, too.
And remember… normal is just a setting on your washing machine.
Love,
Sky
The purpose of this site is simple: to serve as encouragement and community for teens with chronic pain or other chronic illnesses. I personally have fibromyalgia, so this blog will tend to focus on that more than anything else. However, I don’t want to limit this blog to just fibromyalgia or even just chronic pain. This blog’s focus is that, yes, but let’s face it: having ANY chronic illness when you’re a teenager can be an absolute pain in the butt. I’m here to tell you that you’re not alone, and hopefully you can remind me of that from time to time, too.
And remember… normal is just a setting on your washing machine.
Love,
Sky
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