Walk In The Rain With Me: illness

illness

To Anyone Who's Hit Their Limit...

Tuesday, April 14, 2015

humor

An Open Letter to the Doctor Who Did Not Understand

Thursday, February 26, 2015

An Open Letter to the Doctor Who Did Not Understand

Dear Doctor X:

I am going to assume that you remember who I am, but just in case, allow me to refresh your memory a little. I am that girl you saw a few weeks ago: the one who didn't make any sense. I am that homeschooler who's graduating a year early. I am that patient whose blood-work looked fine and yet could hardly walk on her own. I am that girl who has an obscure chronic illness that you really don't know much about.

Yes- that was me.

I am writing this letter today not just for myself, but on behalf of so many other people who are misunderstood. On behalf of all the homeschoolers, and the EDSers, and anyone living with some kind of chronic illness.

Because you, sir, made a few mistakes during the course of my office visit, and I feel that it's important these things be pointed out for future reference.

First, I would like to direct your attention towards my chosen method of schooling. I am, as you will remember, a 15 year-old, homeschooling junior in high-school. I am graduating a year ahead of most kids my age, and am planning (at least for the moment) to "go off" to college almost immediately after finishing high-school.

When you found out about this, I could tell you were puzzled, and I believe you jumped to some very wrong conclusions. From the confused expression on your face and the defensive tone in your voice as you asked me why I was "in such a hurry", I believe you may have thought that I was, perhaps, trying to get away from some troubling environment at home.

While I freely admit that our home is not perfect (whose is, after all?!), this "lack of perfection" is definitely not the motivation behind my graduating early, or my current decision to go off to college so soon. I first began homeschooling because my older sister had been homeschooled from the start due to her personality. I never had any problem with being homeschooled, and absolutely do not regret my mom's decision to do so.

One of my favorite things about being homeschooled is the flexibility in pacing. From the very beginning, my mom has made it clear to me that if I am comfortable with and enjoy a particular subject, I am free to work through it as quickly as I wish. Because school has always come easily to me (and actually been something I enjoy!), I worked through my pre-school/kindergarten program quite quickly, and by the time I got to first grade, I was actually at a second to third-grade level for most of my work. I don't say this to brag, but simply because it's the truth.

Because I was ahead and not in a public school system, I wasn't confined by my age. Since the first-grade work bored me, I moved up into second and third-grade classes. And because I had already learned all of the second to third grade classes by the time I was actually the appropriate age, I simply moved up to the third and fourth-grade classes.

And so on and so forth... I remained a school year ahead of most of my "peers", and here I am- a fifteen year-old junior in high-school.

Now that we've got the whole "homeschooling issue" out of the way (although I don't see why it should have been an "issue" in the first place), let's move on to the more important issues I want/need to bring up.

When we started talking to you about the health problems I was having, I began to get the impression that you simply do not know how to deal with patients like me.

I was, as you should know from both my medical file and our personal conversation, diagnosed with two chronic illnesses in the past 18-24 months. Both are known to cause severe fatigue and chronic pain, and despite not being traditionally "serious" (I'm not likely to die in the next few years because of them), they both dramatically alter life as we know it.

After getting sick, I was forced to reevaluate and readjust my life to accommodate this new "house guest." As much as I wanted to just go on with my life as I always had, my illness wouldn't let me. I could no longer be as active as I used to be, because overexerting myself would leave me hardly able to get out of bed the next day. I couldn't be spontaneous because every little thing had to be planned around my medication schedule, my hydration needs, and my decreased energy levels.

When I mentioned the fact that I hadn't yet gotten out of bed at 1 o'clock in the afternoon, you (trying to be funny) said, "What, were you lying in bed eating grapes?" To someone who longs to be crazy active again, this stung me in ways that very few things can.

No, I was not lying in bed being lazy just for the heck of it. I was busy doing my school-work, and the reason I hadn't gotten out of bed yet was because I knew I had to be somewhere later so I was trying to conserve my energy.

That's another thing about my illness- it has forced me to know, recognize, and actually pay attention to my limits. I used to be that kid who did everything. I was constantly rehearsing or learning lines for my next play. I was in dance class for hours every week, and watched my siblings in my spare time, all while keeping my grades up and attempting to learn the writing trade.

Dr. X, I was that kid. I was the "teacher's pet." I was that kid who never complained when she had to work hard in class. I was that kid who pushed through sprained ankles and torn muscles. I was that girl who had to be forcibly kept from dancing while recovering from an appendectomy.

Do you realize how much humility it takes to admit that you're not strong anymore?

Well let me tell you... It's a lot more difficult than you seem to believe.

It's not some walk in the park, and I certainly don't enjoy being forced into the role of "sick girl", "tired girl", or "girl who isn't allowed to do anything." I certainly don't enjoy feeling like I'm constantly recovering from the flu, or being banned from the jobs that involve going up and down stairs. I certainly don't enjoy having everyone know that I'm not allowed to do any heavy-lifting. I certainly don't like fainting in front of my friends.

Do you really think, then, that I want uninformed doctors to insinuate I'm being lazy? You looked at my blood-work and my "brisk reflexes" and you knew I wasn't in immediate danger. You knew I wasn't dying, and you couldn't figure out how I could possibly be "so sick."

Please do not take this the wrong way, Dr. X... Do not mistake my snarky tone as anger towards you. I'm not mad at you. I am mad at our society for being a place that encourages thinking which leads to responses like yours. I am mad at the medical field for neglecting to educate doctors about the true affect chronic illness has on the person and not just the body.

You see, I understand that you don't "get it." I know that you don't know what it means to be sick but not dying.

And really, you don't need to.

But just trust me when I say that we're trying every bit as hard as you are...

...

If you could write a letter to anyone, who would it be, and what would you say? Be sure to let us know in the comment section below, over at my Facebook page, or email it to us at anastasiarosewrites[@]gmail[.]com!

...

101 Things- Counting Down

I have started making a time capsule [#16) with my best friend, and we'll hopefully get it finished this weekend! Also, still hard at work on my cranes. I'm 1/10th of the way there!

anxiety

Because I'm a Superhero

Thursday, February 05, 2015

My body is verifiably insane... It perceives normal, everyday circumstances as a life-or-death situation and responds accordingly. It creates problems for itself that mystify even the most skilled of doctors.

It's been a while since I wrote about being sick. It's not really that I've been avoiding the topic. It's just that I've been... trying to move on.

You see, I want a life that doesn't revolve around illness. There is so much I want to do, see, and accomplish, and it's my belief that I could do all of that without being sick. But that's not an option for me- as much as I would like it to be.

So every day, I go about my life and pretend. I pretend to be alright. I pretend that I'm not mentally and physically exhausted. I pretend that I feel like being out of the house. I pretend I'm not struggling just to stay on my feet.

In the end, one can only conclude that

I must be a superhero.

You see, when Bruce Wayne goes to the grocery store (what a joke, right?!), they might know he's a millionaire. They might have seen him on TV. But they have no idea he's a superhero.

Or when Clark Kent stops to buy gas, they might know he's a reporter. They might recognize his face from the newspaper. But they have no idea he's a superhero.

Tony Stark, Bruce Banner, Peter Parker...

No one knew.

My body fights so hard, one can only conclude that

I am a superhero.

I hide my powers so well, one can only conclude that

I am a superhero.

The world is full of superheroes. Full of Bruce Waynes and Peter Parkers who believe that the only way they can save people is by wearing a mask.

"Society tells you your only power is your invisibility. Tells you that they would save you if only they could see you, but of course they cannot see you. Of course they will not save you, no matter how bright you sew your cape. Invisibility is not a superpower, it is the best weapon of a broken system desperate to make their streets look clean."

So to all of the superheroes out there who still have a secret identity- you're not the only one. To all of the superheroes out there who believe no one will understand- it's alright to take off the mask.

Not everyone will understand... but there are still some who will.

...

What's your superpower? Leave your thouhgts in the coment section below, over at my Facebook page, or email it to me at anastasiarosewrites[@]gmail[.]com.

...

101 Things: Counting Down

I made this.

family

When Thanksgiving Can't Be About Food

Saturday, November 29, 2014

I'm sure everyone (meaning all the Americans) noticed that Thursday was Thanksgiving day. A day on which we traditionally take time out to recognize how blessed we are by spending time with family and friends.

But I think we all know what the really big thing about Thanksgiving actually is. The thing that immediately comes to mind when someone says "Thanksgiving."

That's right- the food.

I have yet to meet someone who said they didn't love Thanksgiving food, and I am no different.

The Thanksgiving meal has always been a highlight of the year for me. Most of the stuff on the table isn't stuff we eat very often. Turkey is a rarity at our house, and sweet potato casserole just doesn't exist outside of Thanksgiving and Christmas. Plus, you usually don't have to worry about people telling you there are too many starches on your plate.

But what happens when Thanksgiving can't be about food?

As many of you know, I have been diagnosed with something called Ehlers-Danlos Syndrome, or EDS. EDS is a genetic disorder in which your body produces faulty collagen that cannot do its job.

Because collagen is present all over your body, the symptoms are, too. My joints are unstable and in pain. My blood vessels cannot contract correctly to control blood-flow, which causes me to faint. My skin is slightly more stretchy than normal, and bruises quite easily.

But the most troubling symptoms at the moment are actually all of the stomach issues I experience on a daily basis. Pain, nausea, and lack of appetite are all things I struggle with, plus some other stuff that I'm not going to mention right now.

All of this combined means that mealtimes are especially difficult for me. I almost never feel hungry, and when I do try to eat, every mouth-full is a fight in and of itself. I don't want to eat because when I look at that plate, all I see is that, in about fifteen minutes, I'm going to feel terrible.

I love food, but I don't love eating.

And that's what everyone was doing on Thanksgiving Day- eating. All of my favorite foods were there. The house smelled delicious. The table was set. I really wanted to eat like a normal person does.

But I just couldn't.

At first, it really felt like Thanksgiving had been ruined. I couldn't enjoy the turkey, or the several different kinds of pie. I couldn't eat seconds and thirds of sweet potato casserole. I didn't get to try everything that I wanted to. And I still felt terrible after my little plate of lunch.

I was feeling pretty disappointed. But by the end of the day, I realized that this was actually a blessing in disguise. If I was going to enjoy Thanksgiving, I was going to have to enjoy it for some other reason than just because of the food.

When Thanksgiving isn't about the food, you have no choice but to make it about something else.

Spending time with family is a bigger deal when you can't eat. Sitting around the table talking is more important when food isn't. And you're more thankful for what you can eat when there's more stuff that you can't.

I know the holiday is technically over now, and you're probably preparing for Christmas already, but Thanksgiving isn't just a day- it's a lifestyle. So as the weeks get crazier and crazier, take some advice from William Wordsworth:

"Rest and be thankful." -William Wordsworth

___

What little things are you most thankful for this season? Be sure to leave your thoughts in the comment section below or over at my Facebook page. Additionally, you can now email me at anastasiarosewrites@gmail.com!

illness

Invisible Illness Week: Just One... Pt. 4

Sunday, September 14, 2014

"When 'I' is replaced by 'we', even illness becomes wellness." -Unknown

We are coming to the end of Invisible Illness Week, 2014. (IIWk)

I've already done several Just One posts this week (HERE, HERE, and HERE), but I figure one can never do too many. But before I get into the post itself, I would like to thank everyone who has supported me by sharing these posts. My Facebook posts have reached nearly 800 people this week, and it's all because of you guys. Thank you for all of the love and support!

I had a hard time trying to decide what I would do for my last "official" IIWk post. It feels like one of the most important posts of the week, because this is what you'll be left with. This is it- the grand finale. The big finish.

When trying to come up with something that satisfied all that I want for my last post, I asked myself this question- if they could take away just one thing, what would I want it to be?

It might seem like a hard question to answer, because there is so much I hope you learned from this week. But in reality, there is just one thing that is imperative that you know. It's just four simple words, yet they mean so much to those of use suffering from invisible illness.

You. Are. Not. Alone.

When you live with an invisible illness, it seems like you're the only one who "gets it". You feel completely isolated and cut off from the rest of the world. You can no longer do all of the things you want to. You're not the healthy, robust, energetic person you used to be.

But you need to know that there are others out there who understand. In fact, approximately 100 million people in the US alone are living with an invisible illness. Their diagnosis may not be exactly like yours, but they are living with some form of illness that no one else can see.

Alone, we are just one. But together, we are many. Together, we can make a difference. Together, can spread hope.

...

Here a few links to help you on your way.

Invisible Illness Week

Rest Ministries

Invisible Disabilities Association

But You Don't Look Sick

Dysautonomia Information Network

Ehler's-Danlos National Foundation

National Fibromyalgia Association

ME/CFS Association

Molly's Fund (Lupus)

And you can find a more complete list of chronic illness Associations and Foundations HERE, courtesy of Invisible Illness Week.

friends

Invisible Illness Week: Just One... Pt. 3

Friday, September 12, 2014

"A friend is someone who knows all about you and still loves you." -Elbert Hubbard

September 8th-14th is Invisible Illness Week (IIWk). Every year, the founders of IIWk choose a slogan that acts as a theme for the campaign. This year's theme is Just One. Because alone we are just one... but together, we are just one of over 100 million living with an invisible illness. You can find more Just One blog posts over at their website.

I have already written two Just One posts (HERE and HERE), but I decided I needed to do another one. So here is Just One reason my friends are the best people ever.

Since I've gotten sick, one the most difficult things for me has been the way my illnesses have affected my ability to have fun. My extra-curricular activities, my hobbies, and even my outings with friends have all had to conform to this new lifestyle that being sick commands.

Sometimes I have to cancel plans. Sometimes I don't get to do every step in dance class. Sometimes I need to walk a little slower or take more breaks. I get hot and can't work as long, or my joints start acting up.

And when you live with chronic pain, it is so much easier to get distracted. You brain can only focus on so many things at once, and when pain is occupying too much space, something else is sacrificed. I tend to space out during conversations, or stop in the middle of a sentence. Sometimes I completely forget what I was trying to say, or have no idea what word I'm looking for.

I imagine I can be a hard person to be around. But no matter how difficult I am, my friends are there for me.

They've been willing to slow down to my pace. They don't give me weird looks when I need to sit down. They're understanding when I forget what I meant to say, and do their best to help me out when I can't think of the right word.

Some people find that a lot of their friends don't care anymore, or don't have time for them, or just can't understand. But my friends have stuck around.

And that's just one reason my friends are the best in the world.

illness

Invisible Illness Week- Just One... Pt. 2

Thursday, September 11, 2014

"Always find something to be thankful for." -Unknown

September 8th-14th, 2014, is Invisible Illness Week (IIWk), and I've already done three posts HERE, HERE, and HERE. As I explained in yesterday's post, the theme for this year's IIWk is Just One. Because although we may be just one, we are just one of over 100 million living with an invisible illness. For more Just One posts, check out the IIWk website.

As I'm sure most of you know, I am a Christian. Ever since the beginning of my illness, I have been constantly searching to glorify God in my situation, and find hope in my circumstances. I firmly believe that there is a purpose behind everything- including my illness- and although it may have taken a little while, I was finally able to see just one thing I am thankful for that came about because of my illness.

And indeed, you are looking at that one thing- my writing.

Before I got sick, my plans were to pursue a career in nursing. I loved doctor-y stuff, and enjoyed learning about the human body, how it worked, and particularly what happens when it doesn't work correctly. (That's just one way I think God was preparing me for being sick, but that's another blog post all together.)

Writing was always something I enjoyed doing for school, and a little bit as a hobby, too. I experimented with poetry, and wrote fairly good essays and short-stories for assignments. I kept a journal, thought the idea of writing a book and getting published was cool, but I didn't really consider myself a writer per se.

I started dabbling in writing a little more towards the end of 2012 and the beginning of 2013. One of my New-Year's Resolutions for 2013 was to start a blog, and so Walk in the Rain with Me was born.

It was not long after that my health began to deteriorate. As my energy levels decreased and my pain levels increased, I began to spend more and more time writing in my journal to sort out my thoughts, and my blog became a distraction. In July- only three months after I started my blog- I wrote my first post about being sick. (If you want to read it, click over HERE.)

And that was only the beginning. Since then, I have written nearly 40 blog posts, half of which have pertained to illness and learning how to live a new normal. I've had more than 4,000 page views, 15 subscribers, 1 follower, and over 50 likes on Facebook. I remember being so happy when I hit 100 views, and I still get excited when I see that people continue to read or share my blog posts.

Looking back, I can see how much of a blessing this blog has really been for me. The action of writing a blog post helped me work through whatever topic or struggle I was writing about, and having a place to share my illness journey without all the awkwardness of a face-to-face conversation made it so much easier to cope.

Over the past year and a half-ish, and I have seen first hand what a blessing writing is for me, and it has become just as necessary to my life as sleeping or eating. I started to see that God had given me the gift of words, and I was figuring out how to go about developing it. Because of my blog and my journaling, I have decided to pursue some sort of writing career, possibly through a degree in communications. It has opened my eyes to the fact that my thoughts and plans for the future are likely to change over time, and that's OK.

And this is just one thing I am thankful for that has come about because of my illness...

family

Invisible Illness Week- Just One... Pt. 1

Wednesday, September 10, 2014

illness

Invisible Illness Week- 30 Things About My Invisible Illness

Tuesday, September 09, 2014

"I am more than what you see." -Unknown

This week- September 8th through 14th, 2014- is Invisible Illness Week (IIWk). It's all about spreading hope for those suffering from invisible illnesses.

I've been trying to do a blog post like this for the past month or so, and could never think of the right words to say. I found this on Invisible Illness Week's website, and decided it was just what I needed. So here ya go- hopefully you learn something new about me. Be sure to visit their website for more information about IIWk and life with invisible illness.

30 Things You Might Not Know About My Invisible Illness

1. The illness(es) I live with are: Ehler's-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
2. I was diagnosed with it in the year: 2013 for POTS, and 2014 for EDS.
3. But I had symptoms since: at least 2012 for POTS, and because EDS is a genetic disorder, I've always had it and experienced many of the symptoms of it. (Hypermobility in particular.)
4. The biggest adjustment I’ve had to make is: recognizing that there are things I cannot do anymore, and finding ways to work with my body instead of against it.
5. Most people assume: that I must be very clumsy because I'm always getting hurt due to my EDS.
6. The hardest part about mornings are: just mustering the energy to get going.
7. My favorite medical TV show is: M*A*S*H
8. A gadget I couldn’t live without is: my computer.
9. The hardest part about nights are: the pain that makes it hard to sleep.
10. Each day I take 18 pills & vitamins.
11. Regarding alternative treatments I: am fairly open, though a little skeptical.
12. If I had to choose between an invisible illness or visible I would choose: to stay with what I have now, although I don't think one is better than the other.
13. Regarding working and career: I had to give up my babysitting job because of my lack of energy and patience, but I do hope to look into working somewhere once I turn 16. Eventually, I plan to pursue a degree in Communications.
14. People would be surprised to know: that I can swallow at least eleven pills at one time.
15. The hardest thing to accept about my new reality has been: accepting that I can't do everything I used to be able to, and that sometimes I do need help.
16. Something I never thought I could do with my illness that I did was: raise $1,000 to fund the building of a well through Gospel for Asia.
17. The commercials about my illness: are fairly nonexistent. I have never seen or heard one.
18. Something I really miss doing since I was diagnosed is: having the ability to be spontaneous. I can't just go out and do something anymore- I need to plan ahead in an attempt to have the energy, make sure I have taken my medication, etc.
19. It was really hard to have to give up: being so active. I used to dance at least three days a week, as well as my normal stuff. I have had to cut back on a lot of that due to my illness taking away so much energy.
20. A new hobby I have taken up since my diagnosis is: writing. It had been a casual hobby for a while, but it was only after I got sick that I really began to see how much it meant to me.
21. If I could have one day of feeling normal again I would: go out someplace with my friends, walk around a lot, and then share a really nice meal. Maybe at a buffet.
22. My illness has taught me: that things happen and plans change, but God is still God, and He is never going to let me down. I just have to take things one day at a time and allow Him to work through me.
23. Want to know a secret? One thing people say that gets under my skin is: "I get that too sometimes." Uh... just no.
24. But I love it when people: allow me to talk about my illness while not pressuring me if I don't want to.
25. My favorite motto, scripture, quote that gets me through tough times is: "Remember He is the artist and you are only the picture. You can't see it. So quietly submit to be painted... You are in the right way. Walk--don't keep on looking at it.” -C. S. Lewis
26. When someone is diagnosed I’d like to tell them: that while things may not "get better", there will be better days.
27. Something that has surprised me about living with an illness is: how much more sensitive I have become to the suffering of others. I am able to pick up very subtle clues as to when a person is feeling unwell that I previously would not have noticed.
28. The nicest thing someone did for me when I wasn’t feeling well was: helping me out while I was on crutches.
29. I’m involved with Invisible Illness Week because: I want other people with an invisible illness to see that they're not alone.
30. The fact that you read this list makes me feel: honored. Thank you!

illness

Invisible Illness Week

Monday, September 08, 2014

"Awareness is the greatest agent of change." -Eckhart Tolle

"I have a chronic illness." These are some of the hardest words I have ever had to process.

Nobody wants to think of themselves as sick. No one wants to have to consider how an illness will affect their future, career choices, college options, or relationships. No one wants to be forced to accept the fact that their life is completely changed by this string of apparently unpronounceable words now branding them "sick."

But for many of us, this is exactly what we must do. In fact, nearly 1 in 2 Americans is living with a chronic illness. That's approximately 133 million people.

Now, you might be wondering- is it a big deal? Well, the answer is yes. Having a chronic illness affects every area and aspect of the patient's life, as well as the lives of those around them. Depression is 15-20% more likely in those with chronic illness, and in as many as 70% of suicides, physical illness and chronic pain play a huge part. Of these suicides, over half were younger than 35.

"But Ana, why have I never known that? How could I miss it? Why do I not see all of these sick people around me?"

Of the 133 million people in America with chronic illness, approximately 96% of these have an illness that we refer to as "invisible". They don't use a cane, walker, or wheelchair. They have no identifying marks that make them stand out. In fact, they probably look much like you.

These "invisible illnesses" include Diabetes, Lupus, Chronic Fatigue/ME, IBD, Arthritis, Ehler's-Danlos Syndrome, Fibromyalgia, Dysautonomia, Multiple Sclerosis, various mental disorders, and many more.

You can't see any physical evidence, but they are struggling. They are hurting. And they are living with a disease that has no cure, and sometimes, very few treatment options at all.

And the fact that their illness is invisible only makes it that much more difficult. When others can see evidence of illness- being bald from cancer treatment, a wheelchair for dealing with paralysis, etc.- patients are met with a certain amount of social stigma. But many people also find that friends, family, and even total strangers are willing to lend a helping hand and offer support.

When there is absolutely no physical evidence of illness, patients are sometimes met with skepticism, disbelief, or suspicion- especially in illnesses with very little awareness or those that are misunderstood. They are accused of not needing a disability car tag or the handicap seat on the train. Doctors don't understand what's going on. Family and friends think they're exaggerating.

When you can't easily find other people like you- people with your same illness- you start to feel isolated. It begins to seem as though you're the only person in the world who is suffering like this. It feels like no one can truly understand.

But the truth is that we are not alone. We are one of many.

And that's why September 8th-14th, 2014, is Invisible Illness Week (IIWk)- to remind all of those suffering from an invisible illness that they are not alone, and to show the public that just because an illness isn't immediately apparent doesn't mean it won't change your life.

IIWk isn't about raising funds, or even just spreading awareness.

It's about spreading hope.

illness

Chronically Hopeful

Thursday, July 31, 2014

"The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair..." -J.R.R. Tolkien, The Fellowship of the Ring

Chronic.

It's an ugly word, and one I don't much like. It sounds so daunting. So final. It's a word that tries to blot out everything else in its presence: joy, freedom, potential... and hope. Especially hope.

Hope that there might be and end in sight. Hope in a possibility that there's something else in store for you. Hope for a life that doesn't involve this illness.

But chronic... That means long-term. Long-lasting. Constant. Unending. Difficult to eradicate. Potentially incurable. That means that this disease- this illness- is your new normal.

For anyone who doesn't already know, I was diagnosed with something called Postural Orthostatic Tachycardia Syndrome, or POTS. It was last summer that we first started on my health journey, but I realize now that I've been having problems for much longer. (If you want to read more about that, check over here, where I explain what POTS is and how it affects me.)

After getting the diagnosis of POTS, one might assume that my "journey" was over and that I would move to treating it so I could just get on with my life. Unfortunately, it doesn't work like that for most people. POTS, for most, isn't an illness on its own. In fact, the majority of the time, it's a sign of a deeper problem- the roots of which go very deep. So deep that we don't even realize they are a problem, because they're just normal to us.

I don't remember exactly when, but a while back, something called Ehler's-Danlos Syndrome was brought to our attention. And- like the good little homeschooler I am- I went and researched. And researched. And researched. Then researched a little more. And it was almost scary because the more I read, the more it felt like I was just reading my own health-biography.

Ehler's-Danlos Syndrome is a genetic disorder affecting your collagen. For some reason, my body produces insufficient collagen that can't do its job correctly; it doesn't hold things together, so I'm too stretchy.

The most obvious repercussion of the "collagen laxity" is joint hypermobility. Having been a dancer my entire life, I never really noticed that I was hypermobile. I realized that people outside of dance couldn't always do everything I could, but I figured it was just because they weren't in dance and I was.

But dance classes can't explain away the fact that all of my fingers are hypermobile. It can't explain the fact that my elbows extend past the normal range. And it certainly cannot explain the other ways EDS manifests itself- stretchy guts, stretchy blood vessels, stretchy skin...

Yes. EDS also affects your skin. Mine isn't extremely involved, but it is mildly stretchy. If you're up for something super weird, Google "Gary 'Stretch' Turner". My skin is nowhere near that extreme, but it is a little stretchy. It's also very soft: to the point of people asking me what product I use. "Oh, it's called genetic mutation. Pretty extreme, but... Whatever works!"

Now, some people- doctors included- make the mistake of assuming that EDS really only affects your skin and joints. But nothing could be further from the truth! Collagen is a huge part of your body, and when it's messed up, a lot of stuff goes haywire. That abnormality in my collagen causes my blood vessels to be too lax, meaning that blood pools in my legs instead of going to my brain, which makes my heart speed up and causes me faint.

Hence the POTS.

It also causes the stomach problems I have. Because my guts are too stretchy, my body has to work harder to get food digested properly. This makes for a lot of issues in the GI tract, because food isn't meant to linger in your stomach for too long, and when it does, it causes nausea, heartburn, poor appetite and/or weight loss, feeling full too quickly, and other unpleasant stuff we won't get into.

So, you see... It's all connected, and it's all a part of me.

That's the thing about EDS- it's not something you acquire, or contract, or could have prevented. It's genetic- that means you're born with it, and you will die with it unless amazing scientific progress is made.

Does this mean I will always be such a mess? Not necessarily. A lot of people go through periods where they're very bad, then get better for a while, and then have another "flare" in their symptoms.

But it does mean that certain things will likely always be harder for me than for "normal" people. It means there is a fairly high possibility of further health problems when I get older...

Sometimes I feel like I get a little glimpse as to why I have this and why it was given to me. I see that I was already given (as part of my personality) some little things that make it easier for me to cope with than it might be for some people. I see the various lessons I have learned through it and how it has brought me closer to God, and I almost begin to understand its purpose here in my life.

But then there are times- the really bad times- where it's just so hard to understand why me. Times when any kind of reason or purpose seems infinitely far away. Times when I can't see any reason why it should have to be this way.

There are times when that word- chronic- is the only thing I can see...

Chronic.

It's one of the worst words for any sick person to hear. We want to hear that we will "get better soon." We want to hear that this is all just a short chapter of our lives, and that with rest and medicine, we'll be back to normal very quickly. We want to hear that there is hope for us.

But chronic... That means we're stuck with this. That means we'll be battling our illness for a very long time. That means it's part of us. That means life as we know it is over, and a new normal begins to set in. That means hope is gone, doesn't it?

But I know that my Savior is greater than my disease. My God is bigger than my small view of the world. There may be incredible pain in my world, but there is beauty, too. There may be darkness, but there is light.

And I may be chronically ill... but I'm also

Chronically Hopeful