#talkingback

A kids and teens perspective on chronic life


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Life with chronic pain and illness is certainly full of ups and downs. If you have a story, experience or insight that you want to share, become a TCAPP guest blogger.  By giving voice to the many issues we navigate each day, you can help to raise awareness and promote better understanding. Review the TCAPP Blog and Content Guidelines and submit your guest blog today!


Taking Chronic Illness To College

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By Michaela Sullivan

College is a chance to start fresh.

For most teens, you’re going to a place where very few people know personal details about you. You start your first semester as a freshman, and you have a clean slate. For some, this is good. The mistakes made in high school don’t follow them. For some, it’s bad. Their popular status doesn't matter here. For me, it’s both.

It’s nice to come to a new school, in a new state with new people who don’t know me as the sick kid. They don’t know about my long hospital stays, excessive surgeries, or why I have all of the scars on my hand from botched IV jobs.  Unfortunately for me, my condition is still there. And as much as I have enjoyed my normalcy, I recently found myself in a situation where I had to explain my chronic challenges to my new friends. Which I found to be difficult. 

When I started college, I jumped in head first. Choosing to take all of the possible classes, signing up for a few clubs, getting a job, and opting to hike up the dreaded hill as if I had no medical problems at all. In hindsight, maybe I dove in a little too fast. But it was just so damn exciting to be completely normal, have a new identity, nobody looking at me and telling me I shouldn’t do that because I’m too fragile. 

But unfortunately, I started falling apart. I was still working hard to keep my strength up with daily physical therapy, but the amount of walking I do in a day is crazy considering I was mostly bed bound and unable to walk last year at this time.  I’m a tough one though, spending 12 hours at a time out of my room, sitting on floors and carrying heavy backpacks. I felt fine doing so too, until one day I didn’t. My eagerness finally caught up to me mid-September. My hip dislocated somehow, leading to back pain, leading to rib pain. The domino effect hit me hard, but I only let it slow me down a little bit. Then in the beginning of October, I was hit with a respiratory infection. Coughing like crazy, can be a problem when you have Ehlers Danlos, because your ribs can sublux. So getting sick for me, meant also bringing out even more of my ribs and hurting my neck and shoulders. If you know me, you know I’m stubborn. I’ll walk a mile with a dislocated hip. I won’t tell people I’m in pain unless it’s bad. So this was hard for me to have to explain why I wasn't around for a few days, because my friends here don’t about my challenges or know what to look for. 

I’ve told them some things, small details like “yeah, my joints come out a lot” or “yeah, I have the body of an 80-year old woman”, but I’m not sure they fully get it yet. They look at me like I have 6 heads when I casually mention that I need to go try and pop my shoulder back in, and don't seem to fully understand why I wouldn't want to participate in certain physical activities. But they’re starting to understand me and my troubles. They know I’ll rarely ask for help, but they make small comments like offering me a bed to lay on, telling me not to run (oops!), and saying they won’t hug me too hard because I’m fragile. It’s simple little things like this that make me feel like I’m finally developing a solid foundation here at my new home. A foundation that understands me, something I was afraid that I wouldn’t find here. It's weird because I didn't want them to know, but I guess ironically because they know, it makes living easier for me on some levels. 

So yeah, going to college is awesome. It gave me a fresh start with most people. But when bad things happen, I know my core friends will be there to catch me. So maybe my fresh start and trying to deny my chronic illness was not the be all and end-all that I thought it would be. Friends are the support that help you navigate in this life. So by letting those close to me know about my challenges, they ironically can improve my chances of succeeding in my new on-campus life. 

How much of your life with chronic illness do you share with friends?  What are the pros and cons? 

My Biggest Accomplishment

My Biggest Accomplishment

By Felicitas Tschurtschenthaler

My whole world shattered into thousand little pieces when I became sick on October­ 3, ­ 2010.

 Little did I know at that time that a sprained ankle would take over my whole life within a matter of days when I developed Complex Regional Pain Syndrome. Soon after that, I entered a vague state of existing rather than living, seeing doctor after doctor, not being able to think clear because of the medications and excruciating pain, and eventually having my high hopes for treatment and a cure crushed over and over again. Life kept going on, but I just wasn’t a part of it anymore. Instead, my life now consisted of social isolation, trying to find the missing pieces of this never ending puzzle, desperately trying to convince my doctors to do something, researching and becoming my own advocate at age 11, and dealing with the emptiness that held the girl I used to know in hostage. I just wanted to find a way out of this dark and painful world. I wasn’t done living yet. But the pain didn’t care. It felt like I was drowning, unable to move, burning from the inside out. I lost not only my leg to this disease, but also my friends, education, hopes and dreams.  

But I did not lose my smile, and CRPS will never ever take that away from me.  

And one thing is sure; I will never stop fighting and I will throw the very last punch.

I will survive.

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The Calm AFTER The Storm

The Calm AFTER The Storm

Almost everyone has heard or will use the expression “the calm before the storm” at some point in their lifetime. It’s a popular idiom, used to illustrate the moments before chaos ensues. But what about the calm after the storm? The strange feeling of Zen that comes across you when a disaster is over, and you are still standing. My life was a bit of a medical storm up until January 20, 2016 when I underwent surgery that literally changed my life. Now as I sit here in the wake of it all, I realize how big my storm truly was. 

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Chronic Illness VS Senior Year

Chronic Illness VS Senior Year

Senior year, or as I was going to call it, “Year of Michaela”. After all I’ve contended with in the past, I figure I finally deserve a good year. And it was really setting up to be a great year too. I’m in so many amazing classes. Newspaper production (!!!!!), AP Psychology (isn’t that ironic considering my rare disease was first diagnosed as a somatic disorder), Sports Marketing, Photography, Current Issues, and so many other interesting classes made me so excited for this year. I was determined to be okay this year, and to be able to go every single day. 

Then we reached the 3rd day of school. LOL. The THIRD. It’s almost laughable at how quickly it all unraveled. On the third day of school, my hip subluxed pretty bad. So I limped my way to the clinic and missed the second half of the third day. 

Then that night, I went to get my hip set. It was pretty tough to get it in, but in it went. So the morning of the fourth day, I took my pain medication and went in to school. I must remember to not take those on such an empty stomach. When I got to school, I threw up, and yes, had to be sent home - again!

So I missed the second half of the fourth day.

Days 5 and 6 I went in and made up all of my work, and I was actually in a good place. I convinced myself that last week was a fluke and that I was going to be okay. Wrong! 

Day 6, I come home with my hip out again. And it’s extremely painful. So I miss Day 7.

Because my hips are so loose right now, I have to be very very careful of how I sit and I can't sit for very long. So now I can only do half days for Days 8 and 9.  I have a neurosurgeon appointment that I have to travel for. (Unfortunately many of us EDSers have to travel to get experienced doctors who understand EDS). So there goes Days 10 and 11.  So now here I am, laying in bed with both hips dislocated, hemming and hawing over whether or not I should change my schedule to some online courses. For now, the answer is no. I have worked so hard for the last five years to stay in public schools and have some kind of normal. But that may change if my health stays the way it does. You never know where the road may lead, and us chronic people know that more than anybody.

I guess that the main lesson to be learned here is that if you live with a chronic illness, you live day for day. And things definitely don’t always go as planned. Planning is a luxury. But there’s really nothing that you can do about it. Sure, there are more days than not that I curse my body and my life, but there are other days that I count my blessings that I live where I do and I’m able to get the support that I receive. I’m not going to let this upset me too much. Sure, it’s disheartening. But I am stronger than my illness. I am stronger than my body. I am going to kick butt this year, along with so many of the other kids with chronic illnesses who work hard every day. We’re all going through something unique, and in the end I know we’ll come out stronger and it will make us all better people.

That’s my perspective on this situation, and it makes all the difference for me. So, my first few weeks of school didn’t go as planned, but I do know that I’m going to have a great year, I just might have to be creative about how. 

How is your school year going so far? 

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Finding The Light

Finding The Light

By Michaela Sullivan

Throughout the years, people have often said to me, “There’s always a light at the end of the tunnel”. But what happens when there’s no end to the tunnel? If you have a lifelong chronic illness, you’re eternally damned to that tunnel.  So you have to find light IN the tunnel. 

As anyone with EDS, CRPS, or any other chronic pain condition would understand, there are a lot of dark days. Especially in the beginning, there’s a fair amount of wallowing in self-pity, crying because it’s just not fair, and wishing your life was anything but this. And even after you’ve accepted the diagnosis, everyday is a struggle. Watching other teens go to school, parties, concerts, and sporting events is painful. Not nearly as painful as the physical pain that’s preventing you from doing these things, but it’s still pretty painful. 

Part of the darkness of the never-ending tunnel is loneliness.

When you’re out of school, people often forget you. Out of sight, out of mind. And you know deep down it’s not their fault, but it still hurts. It hurts scrolling through Instagram watching your group of friends all at the beach, while you’re laying in a dark room, trying to find a distraction from the pain. But a light IN the tunnel is when people come to visit. For me, I always look forward to visits from friends. I often initiate them, but the fact that they agree to come means a lot to me. It gives me something to look forward to, and a reason to get out of bed, get dressed, and put on my best happy face. 

Another darkness that comes with chronic illness is the depression that many spoonies develop.

Let’s be honest, who wouldn’t be depressed in this situation? It SUCKS. Us TCAPP kids are supposed to be out there living our lives, but instead we’re more often than not on the inside of a hospital. The depression is a result of many things. The pain, the inability to be “normal”, the loneliness, and the stress. Finding light in that darkness is a challenge, one that I myself have struggled with. While anti-depressants help, they don’t make your life go back to normal. Drawing, writing, watching new movies or shows, Skyping with friends, and music is the best way to beat the pain induced blues. 

The final darkness that I’m going to discuss is the stress.

Stress of school, work, and other commitments. For most sick kids, school is a HUGE issue. We aren’t unreliable, our health is, which often leads us to miss A LOT of school. Most chronically ill kids are homeschooled at least part time. But even that is incredibly stressful. Normal kids have stress of English papers, chemistry homework, and general school stuff. Well us chronically ill kids have that too, but it’s a bit different. You see, pain causes brain fog. That’s a fact. So more often than not, I’ll be in high pain during a lecture from my tutor, and be listening at the time, but when I go to actually do the homework, my brain will fail me. Instead of focusing on the algebraic equations that are being explained to me, I’m focusing on the fact that my hip is literally sideways. I’ll plan on doing my Brit Lit paper on a certain night, but end up in the ER instead with a dislocated shoulder. This year, as a result of the stress, my anxiety is higher and I’ve been having panic attacks. I’m sure many of you can relate, which is why we need to find light in this darkness as well. One thing I always tell myself is that when I graduate, it will mean more to me than to the average kid. I’ll have overcome a lot, which will make it even more special. Another light is that I’m educating the school on how to deal with chronically ill children. While I may have cried many nights over the stress that comes from the chaotic system my school uses to educate me, I know that they’ve learned from me. I hope and pray that this will never happen to another kid.

So, while incurable chronic illness may be a never-ending tunnel, there are cracks of light inside.

You just have to look hard enough. 

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The Biggest Lesson That I Learned

The Biggest Lesson That I Learned

By Michaela Sullivan

May is Ehlers Danlos Awareness Month.

As everyone with a chronic illness knows, one of the hardest things is that you never know what the next day will bring. It could be a great, low pain day or a terrible day where you can’t even leave your bed because the pain is so high. Commonly, it’s somewhere in the middle, but you never really know. That’s what makes normal commitments such as school and work so hard when you’re sick. 

As a teenager living with EDS, the thing my illness has affected most is my schooling. Each year my parents and guidance counselor come up with a back-up plan for tutoring just in case something goes wrong. So far, every year, something goes wrong! I haven’t had a full year of school since 7th grade. Now, in 11th grade, the most important year is really draining me mentally, emotionally, and physically. This year, I was in school full time for 7 whole days. Seven!  My EDS subluxations have been a huge problem and all of my ribs came popping out, followed by my hips dislocating, followed by my neck and back discs twisting, followed by my knees becoming unstable, followed by my POTS getting worse, followed by my thumb permanently dislocating. And now, to top it all of, both shoulders now will not stay perfectly in place. So yeah, it’s been a tough year physically. Which explains why I can't sit for 7 hours a day in a plastic chair. It sounds crazy to think that a persons body could be so unstable, but that is what EDS can do to a person. So let me explain more.

Everything about school that is no problem for normal people, kills me. For example, looking up and down for notes KILLS my neck because of my c1 instability. (A lot of people with EDS have problems with the C1 and C2 discs in their neck, that is why they wear neck braces off and on depending on how they are feeling.  Carrying my backpack is murder on my shoulders! Like I said, they keep subluxing. How about those wonderful lunch benches? Just GREAT for my sacrum! Bending my legs that long to sit feels great on my hips!! Shall I go on? ‘Cause I totally can. 

So I just told you my reasons for not being in school full time. And it’s not like I’m not getting an education, because I am. It’s really tough, but I’m used to it. I have tutors that come to the house for a few hours each week. They’re all wonderful, but it’s just not the same as being in class. I have to teach myself a lot, and I have to know EVERY answer because there aren’t any other students around to answer instead. I also miss out on those spontaneous class discussions that turn into great lessons, which really stinks. 

Despite having to deal with all of this, people still say really ignorant things to me. I’ve had people tell me that I don’t earn my A’s. That’s funny, because I’m being graded the same as you, and guess what? i have nobody to copy off of. I’ve had people say that I could probably go to school if I wanted to, that I’m just not motivated. Really? I would NEVER choose to not be in school. Being isolated AND in constant pain is downright depressing and I wouldn’t wish it on anybody in the world.  Why would someone say that? But they have. Another common one is “you’re soooooo lucky to be out of school”. Oh am I?! Wow. I didn’t know sitting in a hospital room or a dark bedroom in a 9/10 pain was lucky. I guess I’m also lucky that my friends all kind of forget me when I’m not in school. I’m lonely, in pain, and missing out on my teenage years and you have the nerve to call that LUCKY?! 

It's funny.... one of the biggest lessons I have learned is actually from NOT being in school, and that is not to judge others. It's not nice and half the time you may not really understand the reality of their life anyways. So, whether you’re a warrior like me (hey, i’ve been through a lot-i deserve that title :) or one of my peers looking for insight, you should NEVER make comments about a situation that you have never been in, or couldn't begin to understand. Maybe this blog will help raise awareness of how hard it is to live with EDS AND help others understand not to judge others. 

Because one person’s heaven could be another one’s hell.  

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Elevator Girl

By Michaela Sullivan

As a teenager, all I want is to be normal. As a teenager living with Ehlers Danlos Syndrome and Scoliosis, my life is anything but normal. Have you ever heard the saying “Why fit in because you were born to stand out”? Unfortunately, it’s true. While I’d like nothing more than to fit in and feel like a normal kid, I am starting to think that maybe I was just destined to be a little bit different. 

In school, for example, I’m barely even there because I can’t sit too long without falling apart. Literally! That alone sparks questions and more light on me than I’d like. But when I’m finally stable, strong and ready to go back, I have to use special chairs to help give the best support possible and minimize my pain. These special chairs are nothing more than the teacher’s chairs, but to the students who are stuck in the small plastic sad excuses for seats, they become envious. So not only am I the girl who’s only there half the year, but I’m also the girl who sits in the special chair. Great! Lucky me!

Another unusual perk I get at school is using the elevator. Now, because my pride is so big, I’ve tried to use the stairs before. But in a high school with 1500 students and 7 minutes between each class, passing time is hectic to say the least. The hallways are narrow and it is like a stampede cattle call. The only time I tried to use the stairs, I was bumped into a wall and sublexed a rib. End of my stairway career. So I take the elevator. I must say that this is probably the worst part of my day. I shouldn’t feel embarrassed, but for some reason I do. I look completely normal from the outside, so naturally, people think I’m fine. I’ve been approached many times asking why I don’t use the stairs, and it’s made me paranoid. When the cute senior boys watch me step into the elevator, my face goes red. Do they think I’m just lazy? Or too out of shape to climb 3 flights of stairs? Or a bad person faking a disability? Now, in reality, they’re most likely thinking about lunch, girls, or the homework that they didn’t do. But in my mind, it feels like everybody is watching my every move, and it’s daunting. 

Is it really fair to those of us who would much rather go unnoticed to have to be under the spotlight suddenly? Am I just being paranoid? All I really know is that I’m going to try to get through the rest of high school with my head down, and hope everybody else is too worried about themselves to worry about me.

 

A Not So Normal, Normal Week

By Karen Richards

Some things are just so ridiculous to imagine we cannot possibly comprehend them. My life is one of those things. I am fourteen. I would like to say I’m beautiful and smart, but that might be pushing it. People see me and they think that I am normal but that’s the thing… I am not normal at all. I have many chronic illnesses like EDS, POTs and Mito to name a few, and bad things seem to sometimes happen to me.

For example, last Friday when I got this migraine. My friend slept over and I guess I was dealing okay. The next day we went shopping and I burned a mix tape on my computer for a friend. Looking at a screen didn’t help my cause.  By 6 o’clock I was in bed with a pillow over my head curled up into a pathetic ball. Migraine!  My friend had gone home at three and we had done absolutely nothing. She decided to go to Launch (a trampoline park), and asked me if I wanted to come but I didn’t feel like jumping on trampolines with a raging headache. I had literally made myself incapacitated in pain by doing nothing.

I went to bed at six and didn’t get up until 3 the next day. My mom came to check on my and I started crying and told her that my head felt like it was going to explode. The first thing we both thought of was that I needed a shower because I stunk like a locker room. Then, the second thing we both thought of was that my head shunt must be malfunctioning.

She emailed my doctor in New York and made an appointment for Wednesday. On Monday, she made me stay home. I swear I have a real talent; I can make my body crash doing nothing. So, I stayed home Tuesday and then Wednesday morning we left for the appointment in New York. We do this drive all the time and it never gets any shorter. Finally "WE WERE THERE YET!".

When we saw the doctor he stuck a needle into my back and then in the shunt. I have just gotten so used to needles in my back I don’t really notice it anymore. Anyways my shunt was working fine so we have no idea why my headache is so bad. Then we went to a family friend’s house, which is basically our home in New York while we are seeing these doctors. God bless them, I don’t know how they put up with us.

My migraine from Friday (it was now Thursday) was still there and was at its worst. We had to see the doctor for one more appointment. While waiting for him, I tore up a paper cup and had the lights off. When he walked in, his first impression of me was a kid with torn up pieces of a paper cup on my lap insisting that he could not turn the lights on. Then as he talked, I couldn’t help but keep groaning "my head." I’m surprised he didn’t run away thinking I was possessed. He had a nurse come in to draw my blood and my first reaction was "Do you have to turn the lights on?" Obviously, the answer was yes. They turned the lights on and I started uncontrollably balling my eyes out. I didn’t even know I was crying I was just in so much pain the tears kinda just came.  After my blood draw, the doctor wanted to see me again but I told my Mom to run and get the car. Since she was slow getting up, I ran with her. In the elevator, my head just hurt so bad I randomly projectile vomited all over the elevator and then to top it off, I collapsed and started crying again. I’m pretty sure the other people in the elevator thought I had Ebloa. 

I slept the whole car ride back only to get to the house where my head felt awful again. Like I said, I’ve got a real talent: I do nothing but it feels like I've just jumped off a bridge.  Over the weekend, I had a lot of studying to do. It was so hard to concentrate with my head pounding, but I did it.  I don’t know why my body hates me so much and causes me all this pain. It’s really stupid like that.  On Monday, I went to school for my exams and called my mom a few hours later when I randomly started breaking out in hives. She picked me up and the office lady gave me the look from hell. “I WILL be seeing you tomorrow for your exams.” She thinks I’m making it all up (which I’m not ) so she’s always giving me a hard time. I just nodded and walked out.

On the ride home, my throat started to close and I couldn’t breathe and since my mom was in the other room I started banging things so she would come in.  She’s totally oblivious, she ignored me. So, like a puffy swollen oompa loompa I waddled into her room as quickly as I could. Then I said I could not breathe in the last breath I had left and she ran to get my epi pen. I had always given myself my epi pens before but I was so dizzy I told her to do it. It was only at this moment I realized she didn’t know how the hell to use an epi pen and was very inefficient at following the instructions on the side. So I had to stab myself. I could barely breathe and as soon as I could my mom took the opportunity to harass me about the one thing I didn’t want to hear ‘Do you want to go into the ER or have me call 911?’ I just shook my head and gave her the easy answer “I don’t have time I have to study for finals. Just do the Benadryl regimen and we will be fine.” So, that’s what we did.

Today, I went into school (thankfully without hives) and totally failed my finals. I should have actually done all that makeup work… Also, it doesn’t help that I was drugged up on Benadryl but hey - excuses, excuses. Now I am dreading the morning because I have Bio and History finals tomorrow. I wish I didn’t have to go but I do no matter how awful I feel.

I guess it’s been a pretty typical week for me. I would love to be the other kids but hey, they don’t get to throw up on strangers in an elevator and I do. My miserable life is hysterical. I guess I have to laugh at it because otherwise I would cry.