Tuesday, December 31, 2013

Another Update! (because I can't think of a creative title)

Just a quick update today! I'm sorry I haven't been keeping up with blogging lately...life has been getting in the way. ;-) I had a wonderful Christmas with my cousins, aunts, and uncles, and have been studying for the exams I got extensions on and relaxing with my family and friends!

My cough has still been bothering me, but I think it worries the people around me much more than it worries me. It hasn't been nearly as bad as it was at college because there are far fewer triggers at home, but I woke up gasping for air in the middle of the night on Sunday. I visited my pediatrician yesterday and was told that I either have asthma or a virus that mimics the symptoms of asthma...only time will tell which, but I was given a medication that will supposedly reduce my cough in either case...fingers crossed, because it's been five weeks and I'm STILL dealing with this thing...

Thank you guys for your continued support, and I hope to be posting more regularly soon! Have a great New Year's!

Friday, December 20, 2013

Messages From the Universe

Still trying to get my feet underneath me...Since I last wrote a post, I had a discussion with the head of the Disability Services Office at my college. She knows me well, and I think she's torn between admiration and annoyance because I am very independent; I prefer not to ask for help.

I do make exceptions though. After encouragement from you guys, the health professionals at my campus Health Center, my college friends, and a couple of my professors, I decided that I needed to get extensions on some of my exams so that I could focus more on getting better.

I requested extensions on two of my four exams, and to my surprise, my professors were very accommodating...actually, I got the sense that they were relieved.

On Thursday afternoon (not yesterday; December 12th), I received a nebulizer treatment at the campus Health Center (I just went to pick up my prescriptions but the doctor heard me coughing and refused to let me leave!) and that definitely helped. I've been feeling a lot better since the paramedics incident on the Tuesday before last!

I took my Latin final on Monday afternoon, and I think it went fine, except the cold weather forced me to have to use my inhaler minutes before taking it, so I was a little shaky and jittery when taking it! Such is life...and my other final was just an essay, so it wasn't a huge deal.

I went home Monday night. I've still been having some coughing/breathing problems, mostly at night, but it's awesome to be away from the smoke and perfume that was making everything much worse. I've also enjoyed reuniting with my friends from home...soon after I got back, they showed up on my doorstep with a plate of Christmas cookies and we caught up on life and everything was right in the world.

Still, I'm worried about stressing my parents out. The other night, I was coughing at 3 in the morning as I laid in bed, and my dad got up and stood in the doorway of my room. I pretended that I was asleep but I could feel his eyes on me...I felt the worry in the air, and I tried to stifle my coughs for the rest of the night.

I think that's about it for now...but I'll leave you with this fortune that I received from a fortune cookie on the way home. Perhaps I received a bit of advice from the universe? ;-) I thought it was spot-on!

It reads: "You need a new environment. Go on vacation."



Wednesday, December 11, 2013

Another Update

Thank you so much for all of your support and for your encouraging comments. It is such a wonderful feeling to know that so many people care about me, and I wish there was some better way to convey my gratitude because words seem so inadequate right now. And to those of you who reached out to me through email when I was desperate and trying not to cry and feeling hopelessly, hopelessly lost? Thank you. Thank you. Thank you.

I went to the health center again today and the nurse practitioner thinks that yesterday's episode might have something to do with the fact that I didn't take my steroids last night (completely slipped my mind!). So I got more steroids to take, and tomorrow I'm going back for two more inhalers.

I hate taking all this medicine because it makes me jittery but I guess it's worth it because breathing is nice. The stress of exams probably isn't helping either, but the underlying cause is definitely not psychological because otherwise the albuterol inhaler and steroids would make my symptoms way worse, rather than relieving them. 

I'm going to try to stay on top of the steroids and inhaler stuff and I hope this all goes away soon because I just feel like I can't deal with it right now. I'm still terrified that it's going to happen again, and what if I'm alone this time? What if it happens when I don't have a friend nearby to call campus safety, and I can't use my hands to use my inhaler?

I have three exams and a paper that need to be done by Tuesday, I am ridiculously sleep-deprived by all of the medicine (averaging maybe four hours of sleep?), and to top it all off, there's ice and snow everywhere, so walking around campus is like traversing an obstacle course...I was really looking forward to this time of year but it's been a nightmare so far. I was told that I can get an extension on my exams if needed, as many of you suggested in the comments...I can't even think about that right now, though.

I hate all of this drama. I hate that an ambulance had to come last night. I hate that I had to sit in the middle of the hallway trying to get air in my lungs with an oxygen mask on my face and everyone staring. I wish I could wake up tomorrow morning to find that these past three weeks have all been a dream.

On the bright side, thanks to the steroids I feel fine right now. Fingers crossed that it sticks and that I can avoid gasping for air in the hallway surrounded by paramedics tonight...

And I called my mom. I told her everything. She's scared. But I feel like I can breathe easier (no pun intended) knowing that she knows. And her support is amazing, too. I want to see if I can stay here for a little longer, but just knowing that she would come and pick me up in heartbeat if I needed her to is comforting.

And thank you guys again for everything. Your comments and encouragement mean the world to me. xoxoxo

Tuesday, December 10, 2013

Just want to break down and cry....

It happened again tonight. I was doing work and chatting with a friend on Facebook when I felt a crushing tightness in my chest and I suddenly couldn't breathe. I panicked, grabbed my inhaler and a water bottle, and left my room.

I didn't make it twenty feet before I collapsed against the wall in the hallway. One of my friends heard me gasping for air and he rushed out of his room and called campus safety right away.

Writing about it now I just feel like crying because not being able to breathe is just about the scariest feeling in the world. I felt like I was dying, could hardly sit up...used my inhaler which helped a little bit but then my hands tightened up from a lack of of carbon dioxide in my blood, so I couldn't use it again.

All the while I felt like my chest was being crushed...no matter how much air I tried to get into my lungs, it didn't seem to be working.

The campus safety officer called the paramedics and they gave me an oxygen mask. They wanted me to go to the hospital because my heart-rate and blood pressure were really high, and my breathing had improved a little but it was still labored.

I didn't want to cause drama though, and after about fifteen minutes of the oxygen mask and three more uses of my inhaler, I felt like I could breathe again.

All of this happened about two hours ago and I'm afraid to tell my mom again. I will tell her...but I just can't bear to tell her now.

And yet I'm scared that it will happen again, out of the blue like it did tonight. What if my friend hadn't heard me, hadn't come out into the hallway? What would have happened if I was out there alone?

I went to the health center this morning and got some more steroids to take...they help tremendously, but what if they don't do enough? The nurse practitioner I saw thought that this whole thing might have something to do with my lungs...and lungs are kind of necessary for life. I'm scared and I don't know how to handle this.

And I still have a lab report to write that's due tomorrow, and final exams start on Friday. I just want to break down and cry. I wish everything could be easier again, wish I didn't have to go through this. I'm scared, so scared, and I feel so alone right now and so overwhelmed about everything.

I'm trying to keep it together but I feel like the world is crashing down around me and there's nothing I can do.

Monday, December 9, 2013

An Update: Because I Owe You Guys. Huge.

When I published my last post, I was feeling lost. Conflicted. Scared. Usually if I need advice on something, I turn to my mom...but this time I couldn't. This time I was scared for her, scared I'd hurt her. And I was afraid, even, to press "publish" on that post. But I am so glad that I did.

Thank you all for your words, each and every one of you. For your support, for your advice, for your emails...for reaching out even though you didn't have to. I don't have time yet to respond to all of them, but I read each response multiple times, and words cannot describe how much they meant to me.

Before I continue, I think I ought to catch you up to speed on what's happened since I wrote that post. I'm so sick of this drama. Sunday night marked the fourth night in a row that I was forced to leave my room in search of some fresh air to breathe. And friends? You're going to sigh at me...I know I shouldn't have done this...but I went alone. My best friend, who also happens to live next door, had fallen asleep early and I couldn't bring myself to wake her. My independent streak has been so helpful when it comes to dealing with my cerebral palsy, but it also can be dangerous in situations like these.

I know I shouldn't have gone alone. I think someone might have called a campus safety officer to help me, though (at this point, I think I have met, like, seven of them? Maybe eight?), because after I had been trying to catch my breath for fifteen minutes, an officer appeared out of nowhere and stayed with me until my breathing was regular again. At this point, it was about one in the morning, and I had used my inhaler twice, so I had the shakes, and I had to get up at 6:30 for a chemistry test the next morning!!

I laid in bed until about three in the morning before the shaking stopped enough for me to fall asleep. And then, to top it all off? When my alarm went off, I looked out the window and it was hailing, and a sheet of ice coated the ground. Campus delayed classes until about 10am, but I got a message from my chemistry professor stating that our exam was still happening at 7:30.

So, still coughing, running on about three and a half hours of sleep, I pulled on some clothes and boots. My friend was begging me to skip my exam; "Chemistry is not worth risking your life for!" she messaged in a final desperate attempt.

I ventured outside anyway, but after a few steps, I realized that she was right. I couldn't physically walk on the icy pavement, and worse still, the cold assaulted my lungs to the point where I could hardly breathe.

So I trudged back inside and emailed my professor, explaining my situation. He agreed to reschedule my test for 2:30...but the drama was only just beginning, friends.

I climbed back into bed and slept until 9:45, at which point I got up and made my way to biology class. On the way to class, though, I was forced to pass by a row of trucks that were pumping out exhaust fumes. At this point I didn't know whether to cry or laugh at the universe....I rushed inside and sat down until I could catch my breath again, and then continued on my way.

For the entire duration of my biology class, though, my breathing never seemed to fully recover. I used my inhaler once in the beginning of class, and that helped, although it didn't fully put a stop to my coughing. At the end of class, though, I reached down for my inhaler and realized that I couldn't find the albuterol part -- the medicine.

My lab instructor realized that I was struggling and rushed down to help.

"Are you okay?" she asked, as I rifled through my backpack in a panic. I shook my head no, breathlessly explaining that I couldn't find part of my inhaler. My professor came over too, and they tried to help me find it to no avail. They took me outside in the hopes that fresh air would help, and it did, a little.

Once I felt a bit better, we went back down and I searched my bag again....jackpot! There it was, the other piece. They sat with me as I inhaled, and then my professor insisted that I go to the campus health center. I was reluctant, but he was right. I probably should have gone even sooner than today, anyway.

He called a campus safety officer to bring me there, and at the health center I was given some steroids to ease my breathing.

My biology professor emailed my chemistry professor explaining what had happened and asking if I could postpone my test further, because the medicine would make me shaky. I ended up taking it anyway, though, shakes and all, because I just wanted to get it out of the way.

And then tonight, my mom messaged me asking about my cough. I paused, considering my options.

"Was it bad over the weekend?" she wrote.

I thought back to your replies urging me to tell her what happened, and I hesitated. But you know what, friends? You were right. She deserves to know. I didn't include every excruciating detail, but I mentioned that I almost passed out on Thursday, and explained that I had trouble on Friday, Saturday, and Sunday too. I told her, too, in great detail, about the incident that occurred most recently.

She was scared, worried, questioning, as I knew she would be. All the same, though, I feel a sense of relief now that she knows.

And tonight, because of the steroid medicine, I feel so much better...who knows? If I'm lucky, maybe I won't have to sit out in the hallway at 12:30am! ;-)

Thank you again for all of your advice; it meant the world to me. Hugs!

Saturday, December 7, 2013

When Vision Goes Black: My Nightmare of a Thursday Night. & Parents: I need some advice please!!

A.K.A. Does the universe hate me? With finals and my breathing troubles, I've been really struggling lately. My incredible friends are the only ones keeping me sane at this point!

Also: I need some advice. The following story is kind of intense and although I eventually told my mom what happened when she pressed me about my cough, I left out major details. When my dad called earlier that evening because I hadn't responded to his messages, I told him that I was totally fine and didn't mention that I had to use my rescue inhaler an hour before. I'm struggling with how much I should tell my parents about this. I feel so guilty that I've put them through so much medically, and I feel like they deserve a break from my medical burdens. I know that if I told them the whole story, they would jump in the car and come get me, and it would consume all of their thoughts. I think it will get better on its own so I'm thinking I'd like to keep this to myself to spare them the worry. I hate being the one that everyone worries about all the time. Hate it. On the other hand, it's kind of unsettling to be keeping things from my parents; I didn't lie to them about what happened, but I omitted the scarier details, so although my parents know everything about what happened two weeks ago, they only know the bare minimum about the other day; my mom just thinks that I have a mild cough now. Anyone have some advice here? Should I tell them everything, or is it okay to sugarcoat the situation a little for the sake of their feelings and sanity?

Anyway, here's what happened. I'd really appreciate if you'd leave a comment with some advice if you have some. :) (Whether you're a parent or not! I'm just trying to put myself in my parents' shoes and decide what would be best for them...)

~

My cough was getting better since my trip to the ER two weeks ago, but then on Tuesday I accidentally inhaled some smoke because a group of people were smoking while I was on my way to class, and everything got worse again.

Thursday evening during dinner, I was coughing so hard that I lost feeling in my hands and my face. My inhaler got my breathing under control and I was completely fine for a few hours.

And then at 11:00, someone decided to throw a party. In the hallway.

That's when I started having trouble breathing again. I opened the door a crack and realized that they had sprayed perfume EVERYWHERE, and that some of it had made its way into my room and was exacerbating my breathing problems.

I shut the door immediately and sent a panicked text message to one of my friends.

"What do I do?!"

Leaving would require me to walk through the hallway full of perfume...but even with my inhaler and a window open, the perfume was making its way into my room.

My cough kept getting worse, so we decided that the best option would be for me to hold my breath and try to leave.

My friend arrived at my door and together we made our way through the hallway, but about halfway through I couldn't hold my breath anymore. Immediately after I inhaled, my cough got worse, and I couldn't get a good breath.

It seemed like we were in that hallway foreverrr, but finally we made it to a spot outside my dorm with clean air. By that point, I had lost all feeling in my hands, and I couldn't breathe out enough to effectively use my inhaler.

My friend called campus safety for help, and as we were waiting for them to arrive, I began to lose my hearing and my vision, I could no longer feel my legs and feet, and my hands clenched and completely stopped working; no matter how hard I tried, I couldn't get them to move.

I was so scared...shaking, gasping for breath, barely able to see or hear and unable to use my hands. I felt completely and utterly powerless.

According to my friend, some of the people from the party saw me struggling to breathe and they laughed. They laughed, and amidst their laughter they asked if I was having a panic attack and then left. 

I don't understand what kind of person laughs when someone is having trouble breathing.

"It took every ounce of my self-control to restrain myself from decking them in the face," my friend said later.

Vaguely I heard a voice next to me, someone I recognized, telling me that it was going to be okay...Then the campus safety officers arrived along with an EMT, and I think they were asking me questions but I couldn't make out the words. I remember insisting that I didn't want to go to the hospital, didn't want to go through that again. The whole world seemed still at this point...I think the whole situation only lasted maybe twenty minutes to a half hour, but it felt like days...

And then my breathing began to come more easily again...with deep, shuddering breaths, my vision began to focus again and my hearing was coming back. It took a while before I could move my hands again and about a half hour before I regained full feeling in my arms and legs, but in the meantime, the oxygen felt amazing as it filled my lungs with each grateful breath.

The room spun for a while, and I felt as though the bench I was sitting on was moving...apparently this was a side-effect of the oxygen deprivation, as was my pounding headache.

By the time I got back to my room, it was 1am, and I was shaky and wide awake because of the medicine from my inhaler. When I finally fell asleep at 2:30am, I closed my eyes and took a moment to be thankful: thankful that I could breathe again, thankful that this nightmare was over.

Since then, I've still been having some trouble, but it hasn't been nearly as bad as Thursday night.

Again, if anyone has any advice, I'd really appreciate it if you'd comment! I feel really bad that I've put my parents through so much already in life...but is it irresponsible of me not to tell them the full story?

Friday, December 6, 2013

Six Years Ago Today:
Don't Let Them Break You
(The Day That Changed Everything: Part 5)

Six years ago today, I fell and my life was forever changed. It's hard for me to open up about, but I have been writing, slowly and surely...

(Part 1, Part 2, Part 3, Part 4)

If I could sit down and talk with the almost-fourteen-year-old me from six years ago, I would tell her...

You are strong. Stronger than you know. You can do this, and you will do this. You will walk again. It will be hard; you will cry, you will question everything, you will feel inadequate...You have permission to be angry at the world for a little while; you can cry about the unfairness of it all and punch the life out of some pillows, but never give up. You will come out of this experience as a stronger person.

Don't listen to the person who doesn't understand. He will shout in your face that you are lazy, a failure...he will tell you that you should be "running a marathon right now" instead of struggling to walk with crutches, and these words will break your soul, knock the wind out of your chest. Understand that he says these things because he cares about you but he doesn't realize that he's tearing you down...he doesn't feel the sharp pain that rips through your leg when you try to take a single step, doesn't realize that a trip across the kitchen feels like a marathon in itself. Wipe your tears and know that you are far from a failure, and when you are collapsing to your knees from exhaustion, remember that you are the antonym of lazy.  
Don't let his words break you.

And that doctor on the other end of the spectrum, who says that you'll probably never get rid of your crutches and will need a wheelchair for long distances? You. Will. Prove. Him. Wrong. One day you will stroll into his office all on your own, without crutches or anything at all. He will stare at you with shocked eyes, drop his pen, and he will assume that he got the wrong patient. 

He will watch you defy his expectations before his eyes.

Is that really the girl with CP who broke her femur? he will murmur to his secretary as you rise from the chair in the waiting room.  

He will shake his head in disbelief as you stroll down the hallway
He will be lost for words.

And you will smile because you always knew you could do it. You always knew that you would walk again.

So, fourteen-year-old me, wipe your tears, keep your chin up, and believe in yourself.

Don't let their words break you.

You got this.