Play-Doh, God, and What The Hell Happens After We Die???

Over the past few months, I seriously debated whether or not I wanted to continue writing my blog. A part of me felt like I had an obligation to keep writing because so many people told me they enjoyed reading what I had to say. It was, and continues to be, shocking that people care that much about my ramblings. Another part of me felt like this part of my life was over. I felt like the journey had ended and there was nothing more to say.

Of course, we don’t really have a say in that do we? Just when you think that all is calm and steady, a new bout of rain and hail hits you, and you realize that you were just in the eye of the storm. You have to keep fighting and wait for it to be over, because it will end. This isn’t Jupiter. Storms don’t last for 400 years here. Another storm will eventually pass through, but hopefully it will just be a “3 PM-in-Florida-during-the-summer” kind of rain.

So here I am, sitting in the rain, writing a blog that I thought I had abandoned. Turns out, blogs are extremely loyal and very hard to shake. Even when you try to drop them off at the shelter, they always turn back up. Only adopt a blog if you are willing to be responsible with it.

[Note: I came on here to write a serious post and I’ve already digressed like four times. I worry I am much too funny for my own good.]

This next bit is going to be a tad dry and factual. I will try to throw in a little humor, but I can’t make any promises. My bad.

I got a cold at the end of May, but I got over it after a few days. Then, at about midnight during the first week of June, I got a temperature and my breathing was more difficult. I went to the Emergency Room at Tampa General at the advice of my transplant doctor. After a bronchoscopy, they determined I had a bit of rejection, but nothing that couldn’t be fixed by a round of chemotherapy. I was in the hospital for one week and then went home.

About a week and a half later, my lung function had decreased even more. I went back to the hospital and it was discovered that I had donor-specific antibody rejection. Basically, my body recognized that my lungs were not a part of the original assembly and decided that it didn’t want an upgrade. My white blood cells started attacking the cells in my lungs, causing significant damage. My doctors put me on an intense round of anti-rejection IV drugs. I felt slight improvement, but now I was on continuous oxygen. They told me that it would take 2-4 months to recover, but I may never be back to my baseline. I was released after 8 days.

It was now July. I felt weak, but we assumed it was from the chemotherapy drugs and the new damage to my lungs. I was fatigued for Fourth of July Weekend, but I tried my best to be involved with the activities and spend time with my family. However, by Sunday, I didn’t want to leave my bed. I didn’t feel like eating, and when I did, I immediately threw up. I was extremely thirsty and I was so weak that my dad had to carry me to the bathroom. As the day turned to night, my breathing became more labored and I became more nauseous. At about three in the morning, my dad and Sheena decided to take me to the ER at Florida Hospital. I was struggling to breathe and I was extremely confused and disoriented. It turns out I was in diabetic ketoacidosis, or DKA. My blood sugar was over 1000, which is life-threatening. My body was slowly shutting down and if left untreated, I would have died. Which my doctors liked to bring up over the next few days, even though they were the ones who released me from the hospital with blood sugars in the 400s and 500s and DIDN’T TELL ME. They didn’t even tell me to check my blood sugars. Yet it’s MY fault that I almost died. Actual conversation before I was discharged for the third time in a month:

Doctor *in condescending doctor voice*: “ You do know that DKA is life-threatening? This is very serious.”

Me: “Nah, really?”

Doctor: …

Me: …

Doctor: …

Me: “Can I go home now?”

Oh no, I’m not bitter at all.

Anywho… so the whole time I’m having this rejection and diabetes drama, my doctors are trying to schedule this Nissen fundoplication surgery to prevent acid reflux which they partially believed caused my rejection. At this point, who even knows? My faith in these doctors is so low that it must be wearing Apple Bottom jeans. They had originally scheduled the surgery for mid-June, but then the second round of rejection happened. Then they wanted to do it before I was discharged from the blood-sugar fiasco. However, being the organized and adept doctors that they are, they didn’t realize that there was a test I needed to have done. When do you think they realized this? If you guessed a couple hours before surgery, then you would be correct. Just typing this out gets me frustrated. I was supposed to be at the hospital for my original surgery at 5 AM. IN TAMPA. CAN YOU IMAGINE IF I WOKE UP AT 3 AM, DROVE TWO HOURS TO TAMPA, ONLY FOR THEM TO BE LIKE “OH. JK! WE CAN’T DO YOUR SURGERY TODAY. SEE YOU NEXT TIME!” 

Thankfully, they realized this while I was still in the hospital and I was spared that nightmare. They finally do this test the next week and schedule the surgery for the final week of July. The surgery involves a laparoscopic procedure in which they take the top of the stomach and wrap it around the bottom of the esophagus, tightening the opening of the stomach and prevent acid reflux. Go watch an animation video on youtube if you are still confused. It’s a very weird looking procedure. Totes worth it.

So after a five day recovery, they finally let me leave the hospital. If you are counting, you would know that this is stay #4 in two months. It was now August. I canceled my lease with an apartment complex near school at the advice of my doctor. I switched from 4 classes to 2 online classes. I hadn’t worked since June. My lung function was low and I was on continuous oxygen. Things were looking pretty dismal, but I had a bronchoscopy scheduled for mid-August and I was looking forward to the next step. The bronchoscopy would tell us if there was still rejection and how we could go about getting me back to normal.

Good News: There was no rejection.

Bad News: My lungs are so damaged that they don’t think they will heal.

What does this mean? I am going to be evaluated for re-transplant.

I know what you’re thinking.

“Why does all this crazy shit happen to you?” The truth is, I don’t know. I’ll never know.

“Is that even possible?” Yep. I know a few people who have had two double-lung transplants.

“When will you get your transplant?” Well, I haven’t been listed yet. If I am listed, I still won’t know.

“Will you get your transplant in Tampa with those terrible doctors? What if they give you the wrong transplant? What if they put in Play-Doh instead of organs?” These are all valid questions. I am hoping that I will be able to be listed at Florida Hospital in Orlando. It is where I got my original transplant. I love the staff, it is close to home, and it is a beautiful hospital. However, if I can’t, I am going to go wherever I have the best chance of survival. That may be Tampa General or it could be Mayo. At this point, I’m just praying for Florida Hospital. I would really like to have lungs for lungs and I trust Florida Hospital to give me human organs instead of Play-Doh.

So that’s a not-so-brief summary of the past three months. Now on to Part 2 of this extremely long post that I just can’t seem to stop writing!

Since I’ve been up to nothing lately, it gives me a lot of time to think and reflect on all sorts of topics. These topics range from feminism to Harry Potter to “Where could I have possibly placed that Pokemon video game?”

I was filling out my Will and Advanced Directive the other day (like any responsible adult) and I got to thinking about death. Well, I was also thinking about how I don’t really have that many possessions, thus making my will quite short. But mostly death. Not that I think I am going to die, nor do I want to die. I just started thinking about what really happens after we die.

I don’t like to talk about religion a lot. I’m actually pretty educated on many different religions, so it’s not because I am not informed. I was raised a Christian and was very involved in the church. I still believe in God and the morals that I obtained from Christianity. Those morals are present in almost every major religion. Be kind to one another. Do not steal. Do not murder. Do not hate. Love. Basically, be a good person. In Christianity, we are taught that only those who believe that Jesus died for their sins go to heaven. I used to believe it, too. Now, though, I’m not so sure. I have a hard time believing that the God I was taught about, the one who loves us unconditionally and created this whole world, would not let good people into heaven just because they didn’t follow a certain religion. I guess that doesn’t really make me a Christian by some people’s standards, but I still consider myself one. I think that if you are a good person, you go to heaven. It’s that simple.

I know a lot of atheists like to point out that there is no proof of God. They’re right. I’m not denying that. Logically, it doesn’t make sense to believe in something that you can’t prove. But I believe in God and an afterlife because I’m hopeful there is one. I feel like its kind of sad to think otherwise.

“But what if you’re wrong?”

What if I am? Who cares? If I die and nothing happens, then I won’t even know. I won’t know that there isn’t a heaven or an afterlife or even a God. It will just be “fade to black…END SCENE” I will just cease. There won’t be any disappointment or moment where I’m like “Well, dammit. I was wrong. I totally should not have been a good person because there isn’t even a heaven! All my goodness was for waste.” I’m not a good person because I want to go to heaven or wherever. I’m a good person because why would I be anything else?

[On the off chance that I am wrong, I’m still comforted by the thought that my body may one day, in millions and millions of years, be a part of a star in another galaxy or some alien species on a distant planet. Science rules.]

This is my suggestion: Believe whatever makes you happy. If you are a Christian, a Jew, a Muslim, a Buddhist, etc., keep on doing you. As long as you aren’t bullying, hurting, harassing, or restricting anyone’s human rights, I’m happy that you found something to believe in. If you believe there is something out there, but you don’t follow a religion, no worries. Religion isn’t for everyone, but respect those who do practice. If you don’t believe in a god, that’s cool too, as long as you don’t condescend those who do. If you believe in Santa Clause and the Tooth Fairy, I’m honestly jealous that you have maintained that childhood innocence for this long.

In conclusion, be a good person. That’s really all I’m asking.

Words

Hello, hello, people of the blogisphere!

We are a little more than a year since my double-lung transplant, and as a result, life was starting to get a little boring. You may have noticed that I wasn’t posting nearly as many blogs. I know that it seems like I’m leaving you all hanging, but in reality my life really isn’t that exciting. I go to school. I work almost every night. I go home. I do homework. I sleep (though not much). That’s about it. Trust me when I say that if I felt there was something worth writing, I would definitely write about it. If there is one thing you don’t want to waste in this world, let it be words. They hold immense power. They can bring someone up, or tear them down into nothing. Release them when they are most afraid, but hold them back when their intentions are impure. I decided a while ago to never waste my words. They are too important. Which is why I didn’t waste them on arbitrary things that weren’t worth the ink they were written with.

These next words, however, deserve to be shouted and screamed and cried and cheered and whispered.

At about 11:00 last night, Logan finally received The Call. The call that we had been waiting 8 months for. The call that holds her entire future. Her future had been in question since before she was born. My parents already had one child with cystic fibrosis and they wanted to be prepared if their third daughter also had the mutation. It was always known that she had CF. There was never a period when she was a “normal” baby. She has been different for her entire existence.

She will always be different, but not because she can’t breathe or because she coughs at the worst possible times or because she spends a large majority of her life in a hospital. She will be different because she is one of the most special people to have ever existed. She is so beautiful and she doesn’t even try. She doesn’t acknowledge her beauty and I often question if she truly knows how lovely she is. Her beauty, however, is not limited to her appearance. She is so fully herself and, if she knows you, is not afraid to show you how truly weird and silly she is. Her sense of humor is out this world and she makes me laugh at least once a day. She is quick-witted, but never mean. She is the best kind of funny, pulling her words from inside her mind instead of pulling out the insecurities in others. She is the best friend you could ever ask for. She will always be there to help you if you need it and will never judge you for the mistakes that you’ve made. She is incredibly smart, but is not pretentious. She downplays her brain, especially her creativity. Whether it be doodling with a pen or pencil, or sculpting something new out of nothing, or painting the world on a canvas, her work is always perfect. Her art is a direct correlation of herself. She looks at her artwork how she looks at herself: never truly satisfied with the result. However, when the world looks at her, all they see is perfection, just how all they see is a perfect piece of art.

After my transplant, I gained confidence and learned the importance of my words and actions. As happy as I am that she will be able to live the life I always imagined for her, I hope what she gains most from this transplant is the ability to see herself how the rest of the world does. I want her to realize that her words matter, that they are important, that people want to hear what she says. More than that, I want her to love herself as much as I love her.

I wrote this poem my senior year of high school for my English Literature class. It’s not perfect, but it is still one of my favorite things ever written. These will always be my words to her, to read whenever she feels less than the perfect woman I know she is.

Sister

Though you’ve grown,
You’re still so young.
I see it in your eyes.
I hear it in your laugh.
You are like a light.
Your innocence shines
Like a diamond among stones.
I hope you never lose that light,
That brightness you bring
To this life.

Though we fight and argue,
I will always be on your side.
When you find you are too weak,
I will support you.
Should anyone hurt you,
I will be the first to defend.
Whenever a tear falls,
I will wipe it away.
If the monsters come out,
I will push them back.

I look at you
And it amazes me.
I see who you are,
The little girl you used to be,
And the woman you will become.
I see how good you are.
So much better than me
In every way possible.
I see everything I wish
I could be, and more.

I don’t tell you,
Not nearly enough,
How much you mean to me.
You were my playmate,
Sometimes my roommate,
My copilot, my enemy.
You are my sister,
My best friend, my rock.
Most of all though,
You are my world.

She is currently in surgery and I will keep you all updated. Thank you all for the support. But most of all, thank you for your words, especially those unspoken.

How do you measure a year?

 

In daylights? In sunsets? In midnights? In cups of coffee?

In inches? In miles? In laughter? In strife?

How about love.

525,600 minutes. 8,760 hours. 365 days. 52 weeks. 12 months. 1 year.

It has been one year since I got my double-lung transplant. You know, the one that saved my life and all that jazz. It is so hard to believe that one year ago I got a second chance at life, one that so few people get. One that I won’t waste.

This has been one of the best years of my life. I finally completed a semester of college. I wore a bikini for the first time in 10 years. I ran a mile without coughing. I stepped out of my comfort zone. I put myself out there. I took risks.

But with every gain comes a loss. Nothing is perfect. Logan’s health has gotten worse. I lost my grandmother, Mimi. I lost my childhood dog, Moose. I lost my post-transplant dog, Margot, way too soon. I got hurt, heartbroken, and frustrated.

Through it all, though, I was surrounded by those I love and those who love me. My coworkers, who a crazy and frustrating, but some of the best people I know. My friends, who always know how to make me smile. My family, who are the best support system. And you, the people who read my blog and have followed my journey since the worst time in my life.

I could measure this year in daylights, which were full of easy breathing.

I could measure this year in sunsets, which consisted mostly of me running around Bonefish.

I could measure this year in midnights, most of which I spent with friends.

I could measure this year in cups of coffee, but let’s face it, that’s an impossible figure to calculate. Its probably around 100.

Love seems like the best option. It surrounded me this year. I felt it in everything I did. I felt it with every single breath I took with these lungs. Love is the only reason I am here. My donor’s family loved him or her enough to donate organs.The love of my doctors to give me a chance. My family’s love that refused to give up. Everyone who gave their love to keep my family going. The true love of my friends that kept them with me even when they could have turned away. The love I have for myself and this life. It kept me from letting go. I love all that I have and all that I have been given.

There are many ways to measure a year. Inches, miles, laughter, strife. I hope you always choose to measure your years in positives. In people you’ve met. In kisses or hugs. In times that you laughed. In movies you’ve seen. In meals you’ve eaten. In breaths. Whatever you choose, let it remind you of all the good that is in your life. If all still seems lost, just have hope. Once you choose hope, anything is possible.

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Being Thankful

Happy Thanksgiving! I hope you all are enjoying your day and time with your families. Even if you aren’t in the United States, I hope you have a beautiful day and remember to be thankful for all you have. I have always had so much to be thankful for, but this year my gratitude has reached exponential levels.

I am thankful to all the people I know (and don’t know) who have been with me for the past year. Your support has made all the difference in my recovery. You let me know that I will always have people who care, even when it seems like I am alone. You were there for me and my family when we needed it and for that I am so thankful.

I am thankful for my friends, especially Moriah, Kaitlyn, and Sarah. I know I put you through hell and you could have easily walked away. But you didn’t. You three are a part of my family. You were there for my family when I wasn’t even awake, always providing comfort when everything seemed lost. I am so grateful to have met you. I know that I can always come to you, no matter how much distance separates us. I love you girls so much.

I am thankful for everyone involved in my transplant. I am particularly thankful for the nurses and respiratory therapists in the CVICU, the staff at Nemours, and my transplant team at Florida Hospital. You all gave me a chance when nobody else would. You put time and effort into a girl who had an incredibly slim chance of living. Because of all of you, I am alive today.

I am thankful for my family. It has definitely been quite a year, but we have stayed together throughout the turmoil. We have faced loss and pain, but we have also survived. We argue and bicker and don’t always get along, but you are the greatest support system a girl could have. I love you and I couldn’t ask for a better family.

Finally, I am thankful for my life. I am thankful for my donor and my donor’s family for giving me this gift. I think about you all the time even though I have no idea who you are. I am thankful for your life, because without it, I would not be here today. I am thankful for being able to go to college. I am thankful for my scars and everything I went through. I am thankful for every breath I take with these new lungs. I have lived my whole life worried about the future. I was so careful about everything. I hadn’t realize how much until I no longer had a time limit. Now, I am not afraid to take chances and be bold and make mistakes and get heartbroken because I have so much time. Time that, before December 27th, seemed short and impossible.

A few weeks ago, I wrote a nonfiction piece for my creative writing class. There is a line that says “The only people who count the years and months and days are those who have few of them.” I still believe this is true, but I also think those of us who have been so close to running out of time also keep track. We count the number of days that we proved everyone wrong. We count how many seconds we are awake when we shouldn’t be. We count the number of people we have met who we otherwise wouldn’t know. We think constantly about all the things that we almost missed. Everyday I think about how I almost wasn’t here, right now, in this moment, celebrating Thanksgiving with my family.

I don’t know if there is some big grand plan for me. I don’t really care. All I care about is how my life has affected others. If I make one positive impact on somebody’s life, I have had a successful life. I am so thankful that I have the chance to live the life I always dreamed for myself. I really couldn’t ask for anything better.

Happy Blogiversary!

Today is the day, exactly one year ago, that I decided to make a blog about my life with Cystic Fibrosis. I didn’t realize at the time how important this decision would be in the coming weeks and months.

Over the past year, I have learned so much through this blog. I’ve learned how therapeutic writing is. I’ve learned how important it is to tell your story and not have others tell it for you. I’ve learned that the online CF community is the bomb dot com. I’ve learned that there are so many people in the world are kind, caring, and compassionate, even if they are strangers. I’ve learned what I want to do with my life. Finally, I’ve learned how lucky I am to have people who support me in everything I do.

I would like to thank all of you for hanging out online with me for the past year. It certainly has been a crazy one, and I can’t tell you enough how much I appreciate that you all take the time out of your lives to see what I’ve written. I know I don’t write as often as I used to, but I honestly don’t want to waste time and words with trivial matters of my life. Since the transplant, my life is strangely normal, which is something I am definitely not used to.

Again, thank you for your support this past year and remember that I love you!

Happy Blogiversary! 

Missed Opportunities

I am so angry. You wanna know why? I’ll tell you why!

 

I was rereading my past blogs because I wanted to get an idea for a creative writing assignment. Also, I like to laugh at my witty humor. When I got to the infamous “Life Ain’t Always What You Think It Outta Be” post, in which I talk about having to withdraw from Stetson and how sad it was, etc., I was kind of happy because now I’m at UCF and I’m taking awesome classes (from what I can tell so far, at least) and I couldn’t be happier. UNTIL I got to the second to last paragraph. That is when I became disappointed in myself. You know why? BECAUSE I FORGOT AN IDIOM. This is the passage I’m referencing:

“So now I’m hoping that one of my scholarships that I set aside for Spring term can be put towards that, lowering our amount due to $600. Which is still a lot of money, but not as much as it was before. Let’s just say it was a frustrating day, added insult to injury, poured salt in the wound, etc.”

So as you can see, there are two idioms currently in this sentence: ‘added insult to injury’ and ‘poured salt in the wound’. Although I did include the et cetera, I am greatly upset that I left out another idiom. I’m very disappointed that I forgot it and I feel like I have insulted this idiom. It’s just as important as the others and is used just as often. No one deserves to be left out. Ohana means family. And family means no one gets left behind or forgotten. Even idioms. 

So, as a formal apology, I created this blog post to showcase said idiom. Without further ado, I give you “Kicked me when I was down.” A lovely idiom that would have fit perfectly in that sentence, if only I had taken the time to remember it. 

Here’s to you, “Kicked me when I was down”, and all other lost, forgotten, misplaced and misused idioms of the English language!

I just really wanted to use the word ‘hullabaloo’

Well, hello, people of the internet! It has been a few months so I figured I would get you all caught up on what has been happening since my last post!

As you may remember (though you may not because it was a few months ago and I realize that the world does not revolve around me, and therefore it is not a requirement that you remember every detail about my life. However, if you do happen to remember every detail of my life, I’m really not that great. I’m not saying that you need new priorities… but you need new priorities.) I got my feeding tube taken out after 10 years! It now looks like I have two belly buttons, so yes, I am an alien. It will eventually close up, but since it had been such a long time, it may take a while. I also had my I.V. Port removed from my chest. So now the only foreign objects in my body are my lungs!

I start at UCF in a few days, which I am very excited for. I’ve missed school. I miss seeing people who are not my family or coworkers. I mean, seriously. Those Bonefish people get annoying after a while. It’s always, “Jordan, can you give me more tables” “Jordan, can you run this to a table for me?” “Jordan, I love your necklace and I’m going to rip it off of your neck” But I really do love my BFG family. Well, except for Meghan. She is too much to handle and I can’t imagine what her ACTUAL family goes through.

Now for the main reason I wrote today: I got a tattoo! Some of you are probably like, “Yay? It’s just a tattoo.” Well, you can leave then. I almost got a tattoo last November when two of my amazing best friends got “with every breath” tattooed on their beautiful bodies. I wanted to, but was unsure of how that would affect possible transplant. I made the right decision at the time, because less than a month later, I was on life support and waiting for lung to become available. Remember that? Ah, fun times.

Well after all that hullabaloo, I wanted to get a tattoo so that I would always be reminded of what I had been through (not that I could really forget, but whatever). However, I was worried that I wouldn’t be able to get one because of the risk of infection and the immunosuppressants that I am on. So I felt like I had been screwed over and that life wasn’t fair because I wanted a tattoo and I couldn’t get one because I had been SO INCONVENIENCED by the double lung transplant that saved my life. Well that pity party lasted all of .5 seconds because, let’s face it, I dislike people who look a gift horse in the mouth and take what they have for granted. Like all my ancestors before me, I did what they all did when they needed guidance and answers to life’s great inquiries: I Googled.

Through my research (I actually only read one forum so I don’t think it counts as research) I found out that others who had received transplants had been given the green light by their doctor. So when Dr. Pelaez said yes, I burst in to tears because that just seems to be my natural response to everything. Robin Williams passes away? Tears. Groot sacrifices himself for the rest of the Guardians? Tears. The WiFi doesn’t work? Tears. You get the picture.

I then drew out what I wanted because I’m a control freak. I wanted my best friends to be there because they came up with the original idea. But I had to wait for Moriah to get back from Gainseville because for some reason I can’t figure out, she actually likes going to UF and doesn’t want to transfer to UCF and spend all her time with me. Weirdo. Moriah finally arrives home from the land of alligators and we went and got my tattoo yesterday! It didn’t really hurt and only took about 30 minutes or so. It turned out perfect and I couldn’t be happier for it. I think you might be able to see my second belly button in some of these pictures. You’re welcome.

 

 

The final product:

 

 

We then went back to Moriah’s house where Sarah used her AMAZING henna skills.

 

So that’s about it. You are all caught up.

The Nomenclature of Bathing Suits

• Drive again
• Get a job
• Get accepted to UCF
• Write a book
• Get feeding tube out
• Wear a bikini for the first time in 10 years (!!!)
• Be awesome

(I checked that last one off the list a lonnggg time ago. Like at birth. 🙂 )

So Logan had her transplant evaluation at Mayo Clinic in Jacksonville a few weeks ago and last week they informed us that they decided to list her! We have no idea when the transplant will happen, but it is such a relief that she is on the list. They will keep track of her degree of illness and move her up on the list accordingly. This time we are prepared. We (hopefully) won’t have to go through that whole scenario again. No more emergency transplants or near death experiences. So, you’re welcome for that.

I know Logan was more nervous to get a transplant before I received mine, but I’m still nervous for her. As terrifying as my whole situation was, the transplant itself went pretty smoothly. I have yet to have any rejection (knock on wood) and I recovered very quickly. Not all transplants go that way. I worry about her so much. We’ve always done the CF thing together. We had each other to lean on and who understood what we were going through. And we still do. But now it’s different, especially for her. She hates that she has to do the vest and nebulizers while I don’t. She hates having to do tube feeds at night and having to wear tankinis [Note: While I was typing this, the little red squiggly line that tells you when a word is misspelled came up. Obviously, this word is not likely to be recognized, but it got me thinking: Who created this word??? Like I get Bikini because bi- means two and I kinda get Monokini because you combine mono- (one) with the end of bikini to get a one piece that is the mullet of bathing suits (business in the front, party in the back) and obviously a one piece is literally ONE PIECE of fabric. But Tankini? It just sounds awful. It has a negative connotation. I think someone should come up with a new name for it. Lemme know if anyone has any ideas.], while I finally got mine taken out and can wear bikinis for the first time since growing boobs. When she coughs, I hurt for her and I know how exhausted she is and I can’t DO anything about it.

I kind of hate myself for it sometimes. Like, all these great things are happening in my life and people always tell me how amazed they are by me and how they were praying for me and that I’m a “miracle”. And I appreciate it. I really do. But I feel like my sisters feel a little left out. I try to divert the attention away from me, but I don’t want to seem rude either. Meghan especially. She doesn’t have CF, so she was never the “sick” child (though she is the most prone to get sick or weirdly injured. Like she had Shingles when she was 7, had a meningitis scare at one point, got an infected toenail in Honduras, broke her braces by running into a wall during laser tag, and other stuff that she might get embarrassed about if I put it on here). People always paid a lot of attention to me and Logan and would not pay as much to Meghan. I don’t think people meant to and she has never said anything, but I would think that this might cause a little resentment. I love my sisters more than anything and I would hate for them ever feel left out or unappreciated or unloved so I sorta blame myself if they do, even though that is irrational. Aren’t we all a little irrational sometimes though?

 

P.S. May is Cystic Fibrosis Awareness Month! So wear purple as often as you can and spread awareness!

Rage, Rage Against the Dying of the Light

A lot has happened since my last post. 

Well, of course! you say. It’s been WEEKS! We thought you had been kidnapped! 

HAHA. So funny. 

Anyway. Today I finally finished my essay for UCF. It is supposed to be 500 words or less. Yeah…about that. Mine is 1,450. I hope they aren’t strict about that sort of thing, ’cause it’s gonna be really hard to cut down. I mean, how am I supposed to accurately describe the past few months in 500 words or less? I mean, have they met me? Well, obviously they haven’t, but I’m just saying.

In other news, the lung transplant program at Florida Hospital is temporarily on hold. They lost one of their surgeons so they don’t have enough to continue giving transplants. But you already got your transplant, Jordan…How does this affect you? It doesn’t affect me. But it does affect Logan. She had already done her whole evaluation and was about to be listed when the surgeon left. You could tell that the whole transplant team is upset about not being able to do transplants. They are recommending patients go to the other centers in Florida. Dr. Pelaez is going to personally go to the centers and “sell” the patients. We are planning on going to Mayo Clinic in Jacksonville, per his suggestion. And when they find a surgeon, Logan will be able to transfer back to Florida Hospital if she wants. 

Hopefully I’ll be able to drive again soon. We are just waiting on the results of my EEG. And then I’ll be FREE! If I get hungry, I can just jump in the car and go get food. [Yes, I know that I can also walk to the fridge or pantry if I get hungry, but it’s not the same. What if I want Chick-fil-a? Do you have Chick-fil-a in your pantry? I didn’t think so.] I can start working again. I’ve missed having an income. It’s like I can hear my bank account whimper every time I spend money. Oh, wait, that’s me. 😉

 

Now, the main reason for this post: My grandmother died about a week ago. She had been sick for about a year, so it wasn’t like it took us by surprise. It’s just surreal. I miss her, but I know that she is in a better place. She had a hard life, and ever since she got sick, it was like something was missing. I think she had kind of given up hope and it showed. When I was in pulmonary rehab, there were people in similar situations. They had COPD and emphysema and other lung diseases, but they seemed much healthier, even though some of them were much older than she was. It made me realize that you have to want to live. I firmly believe that humans have super powers. It’s only in extreme situations that we witness everything we are capable of. It’s like that guy from 127 hours or the soldier in Lone Survivor. You have to push past the pain and fear and sadness or it will consume you. The power of the human spirit is limitless. I’m not saying that people who die are quitters, because they aren’t. Not everyone is able to find that hope inside of them. It’s not a weakness. Death is inevitable and when you know its your time, you know. But if you feel like you have more to offer like I did, fight. Don’t give up. My favorite poem right now (well, it’s always been one of my favorites, but now it applies) is “Do Not Go Gentle into That Good Night” by Dylan Thomas. Here it is for your viewing pleasure:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light. 

 

R.I.P. Mimi! We love you and will miss you! 

“Beware the Ides of March”

Well, actually, you should be pretty excited for the Ides of March (unless you’re Julius Caesar, of course), or March 15th for those of you who are unfamiliar with the history of the Roman Empire. On the 2058th anniversary of the emperor’s assassination by his own Senate, we will be at CrossFit 407 for a fundraiser for my sister and I. They are doing a Workout of the Day (WOD), selling T-shirts, having a silent auction, and raffling off other items. Oh, and I’ll be selling delicious homemade cupcakes, brownies and other delicious, unhealthy items that are perfect for those trying to stay fit and healthy. You can find all the details at: https://www.facebook.com/events/473815169395944/?ref_dashboard_filter=upcoming. 

So unless your Brutus or Cassius, I expect to see you on the 15th. (: