Spoons And Things

Sometimes when I tell the story of my blood clots and clotting disorder I become a little uneasy. The last few days have been that way so I decided that this post will be a break from all that and I will share a song that I wrote in high school after I had the blood clots in my lungs. Later on I will return to telling my story but for now I truly do want to share this with my readers.

Music has always been a huge part of my life, and as I mentioned in an earlier post, when I found out the clots were in my lungs my very first question was if I would ever be able to sing again.

It took a long time for me to work my lungs back up to where they were, and though they will never be 100% that hasn’t stopped me from continuing my passion for music.

I didn’t have a ton of friends in high school because after the clots I was diagnosed with PTSD. This made it difficult for me to make proper connections in my brain and caused me to feel extremely distant from my peers. I threw myself into my music at this point and from that came the thing that I am proud of the most, my song.

I’ve sung this song for many close friends and even in front of a few crowds, but each time it takes every piece of courage that I can find because of how raw and personal the lyrics are to me. So here it is, the most difficult yet beautiful time of my life put into words.

ALL I CAN

Verse 1:

On the corner of whether to run or or die,

I met an angel there

And she saved my life.

Said take my hand, I’ll never let you drown.

I found God that day.

And from then on out,

Chorus:

I take my time to watch the flowers bloom

And when I leave the room,

I say I love you too.

It takes time to want to live again

But I’m holding on,

Ive been holding on.

All I can,

All that I can.

Verse 2:

The rain will pour down onto your hair

And you’ll never think you’ll see the sun again.

But you just wait, your life has just begun.

Oh you’ll see the sun,

You’ll be the sun.

Chorus:

I take my time to watch the flowers bloom

And when I leave the room,

I say I love you too.

It takes time to want to live again

But I’m holding on,

Ive been holding on.

All I can,

All that I can.

Verse 3:

If you’re listening, I’d like to teach you this:

Life is short, time won’t forgive.

Chorus:

I take my time to watch the flowers bloom

And I leave the room

I say I love you too.

It takes time to want to live again,

But I’m holding on,

Ive been holding on.

All I can,

All that I can.

I wish that I had a proper video or recording of the song to share, but unfortunately I don’t. If anyone would like to hear it however, I would love to record and upload it.

So, where was I?

Something about Selena Gomez and lung power, right?

From what I remember of this day, the nurse had just told my mom and I that I was suffering from blood clots and a hemorrhaging lung. At 15 years old I didn’t exactly think I would be in the position to write a will, but there I was. Telling my mom who to give my things to. She shut me down, saying my dad was on his way and everything was going to be okay.

I was in and out of consciousness while they moved me out of the emergency room. I remember screaming as the nurses moved my bed over bumps on the floor out of the elevator. At this point I was in my least glamorous state of coughing up blood into a bucket and trying to stop myself from crying in respect to the pain I was in.

Finally settled into my new room, I heard voices outside of my room. I remember seeing my boyfriend at the time barge into the room while his parents stayed outside with my mom. I couldn’t really talk to him but I sure was glad to see him. His parents slowly came in with a teddy bear and a bouquet of flowers.

Was I really dying? I must really be dead right? People don’t just bring flowers for no reason, right?

“More morphine, please.”

My boyfriend’s mom was sobbing at the end of my bed. I wanted to get up and hug her, thank her for every dinner she ever made me. For every time I came home and complained to her about school. I wanted to hug her. Hug my boyfriend. Hug his dad. I was dying after all, right?

I couldn’t get the words out if I could. Suddenly nurses came in from what seemed like all angles.

“Holly, we just spoke with your parents. We need to transfer you to an intensive care unit at Dartmouth Hitchcock Hospital.”

You need to what me to where???????

I had no idea what an ICU was. No idea where Dartmouth Hospital was.

I remember not wanting to let go of my Boyfriend’s hand. I hadn’t seen him cry until then. The next thing I knew I was in the back of an ambulance with a man I had never seen before.

A paramedic angel.

I don’t remember his name. It might have been Steve. Maybe Peter. Your guess is as good as mine. But it was just him and I now and he was in charge of my morphine so I just wanted to be on his good side.

“Don’t worry Holly, your parents and your boyfriend and his family are going to meet us there. It shouldn’t take us longer than two hours to get there.”

Two. Hours. Can I die yet? Morphine? Seriously, this hurts.

We settled in and I only had the back window to look out of. I was trying to build up the strength to talk to him when he started talking first.

As I have read in an article from gapmedics.com , “Good communication, interpersonal and instructional skills are essential to calming everyone down and getting on with treating the injured.”

He did exactly that. This man didn’t know me from a hole in the wall, but he could sense the crisis I was in and he knew I needed a distraction from my own life for a while. He told me about his wife, his kids, his life as a paramedic. I asked him if I was going ot die and he said

“Not on my watch.”

I remember his voice distinctly. Warm and comforting. He also had a stutter. I think that made me appreciate him even more. He was flawed in the smallest of ways, but he was happy, he had a family, and he was devoting his life to helping others.

I wish I could meet him one more time and tell him that I want to be like him when I grow up.

Continued.. Part 4: A room with a view?

Hey everyone! Thank you for following along with my story. I wanted to take a break from the chaos and talk to you a little bit more about the spoon theory.

So if you have been reading my posts until this point, you have learned a little bit about the first time that I was hospitalized with blood clots. Looking back, it feels like an eternity ago. I was 15 when this happened and I am 22 now, still trying to figure out life as I go along.

I wanted to give a little more information about the spoon theory and how it applies to my life!

When I was 15 and had my first blood clots, I was only on blood thinning medication for 6 months. It took everything out of me and made me lose 20 pounds. I couldn’t eat, think straight, or be myself in any aspect that I was before the medication. I was also diagnosed with PTSD after all of the trauma that I went through.

Now I am 22 and on blood thinners for life after another blood clot that I suffered through when I was 19. I can honestly say that I went through an almost identical process after my second blood clot. Life has not been the same since.

A friend introduced me to the spoon theory when I was at a low point and didn’t know how I would be able to finish college and feel back to my normal self again. I can honestly say this interaction changed everything for me here on out.

See, the thing about the spoon theory is that nobody else has control over your spoons except for you. Even though they are figurative, you still have every right to do with them what you please. This was hard for me to accept at first as somebody who has always tried to please those around me. I knew I could no longer control anything else except for my own life.

When I wake up in the morning, I usually don’t know how I am going to feel. Most days I feel sick and nauseous and all I want to do is go back to sleep. But some days, especially days that I know I have things that I need to do, I can pull myself up and accomplish anything. The hardest part is finding the balance between the two and knowing when I’ve given my all for the day.

On a good day, I wake up early and head out the door to my destination. A challenge for me is breakfast. Since I take my medication at night, I usually wake up feeling nauseous and don’t have an appetite until later in the afternoon. Even so, if I know I will be busy I will take a snack with me if hunger strikes. After I leave, I usually get a coffee and try to feel a little more awake than I am. I truly am never not tired no matter how much I sleep. I can usually go about my day once I am out and about but always seem to come home drained. A tell tale for me is when I am out somewhere and I start to feel dizzy or like I am in a dream. This usually lets me know that I have given all I can give in the meantime and that most of my spoons have been traded in.

I won’t go into detail right now about the bad days, because they aren’t pretty. But I wanted to take a look into the days that I feel like I have enough spoons to give to go about my daily routine. At this point in my life, my routine has been turned on its (butt) so to say. I have graduated college and moved back home with my parents. I feel like I am handling things better than expected however and have some time to myself to get acclimated back home.

So here I am, trying to count my spoons and blessings. Keeping things moving, but sleeping a lot along the way.

There is no easy way for me to remember the day that changed my entire life. One, because I was drugged to the high heavens; and two, because it is still traumatizing to bring myself back to that point.

I remember specifically waking up and watching Wizards of Waverly place on the hospital television. My mom was in the chair next to me with her head down. There weren’t many answers yet, just test after test. So I watched TV. I was 15 and had been going through an “I’m too cool for Disney channel” stage but at that moment, I would have done anything to feel like a kid again.

A nurse swept in past the curtain and closed it behind her. My mom perked up out of her chair to talk. I came in and out of my daze, trying to listen in on what they were talking about. The nurse came to the end of my bed and looked me dead in the eyes.

“The scan came back showing pulmonary embolisms in each of your lungs and hemorrhaging in the left lung.You did the right thing Holly. If you had waited any longer to call your mom, it would have been a very different outcome.”

She might as well have said “Holly, there is lots of blood, you almost died AND your mom would have found you dead! Any more questions?”

I watched my mom break down. I had no idea what any of the medical terms meant but I knew it was bad. For her to tell me I almost didn’t make it was enough information for me. My mom’s phone was ringing off the hook, it was my dad trying to figure out what was going on. I wished she could answer and tell him it would be okay, that I’d be home soon and we will pick up a pizza for dinner. I wished he didn’t have to leave work and fly up I95 to see his daughter clinging to her life. I wished I was Selena Gomez in Wizards of Waverly Place.

I stared in disbelief trying to understand the mountain of information being thrown at me but it was useless. It’s ironic to think back now, because (spoiler alert) this happened to me again four years later in a different country where I REALLY could not understand the information because it was in Arabic.

“Any more questions?” There it was.

YEAH ACTUALLY….. WHAT the HECK do I now??

At this point I couldn’t breathe or talk without feeling like I had been struck by lightning. So I kept it short and sweet, asking the first thing that came to my mind.

I was dying. I knew that. I had no more questions. I just needed to know one thing if I still wanted to live at all.

“Will I still be able to sing?”

“Yes, sweetie. And it will be beautiful.”

*Continued in Part 3: “Paramedic Angels”

Trigger Warning: Blood

Many times when I describe the details of my chronic illness, it seems to go right over the head of the person I am talking to. Sometimes it hurts, because they truly have no idea what my life has been like for the last seven years (nor do they seem to care). Other times though it feels like its my own little secret, like I shouldn’t have to explain it anyways. I shouldn’t want to.

But today I am here to bring you back to the start of my journey living with Factor V Leiden (FVL).

FVL is a genetic blood clotting disorder passed down through mutated genes from parent to offspring. Often times, people with FVL have only one parent who carries the gene which results in a less severe form called Factor V Leiden Heterozygous. Unfortunately for me, the stars aligned just right on whatever-the-date-was, 1994, when both of my gene-carrying parents met and fell in love. Since I have a a copy of the gene from each of them, I have a more severe version called Factor V Leiden Homozygous.

Now I’m really not much of a science buff myself, so hopefully that will be the last of the fancy words for a while. But what I will do is break down the last seven years for you to try and paint a better picture of what living with FVL has been like.

I went on birth control when I was 14. There were no questions, no tests, and no blood work. It was a simple medication that millions of woman across the world had been prescribed and I was just another one of them. A year and a half later I never would have expected the damage a side effect of one simple pill could have done to my body and the fact that it would nearly cost me my life and save my life in the same instance.

At 15 years old you don’t exactly expect anything more dramatic than a bad haircut to happen to you. I was a good kid. good grades, good sports player, good life and all of that was fine by me. The summer going into my sophomore year of high school I worked myself to the bone trying to improve my field hockey skills in hopes of making the varsity team. I knew lots of seniors had graduated and that maybe one of their spots could be mine. I loved to run, and I was good at it too. I knew how to pace myself and work my lungs and muscles to improve my stamina in ways that others on my team couldn’t figure out. I decided if I could perfect my two-mile run time then I really might stand a chance securing my varsity letter.

I knew something was up as pre-season rolled around and I couldn’t get myself out of bed to do my morning run. I brushed it off as being overtired and decided to take a few days to rest hoping I could be back to my normal self when double sessions started. The first morning around 7am I got to the field still feeling a little funny. However, I was looking forward to the run and hoped that my few days of rest would benefit me.

It didn’t. In fact I think I ran the worst that day than I had since pee-wee soccer. I was absolutely defeated. How could I go from the front of the line every time to dead last in a matter of weeks? I was exhausted, my breathing was slow and small twinges of pain came and went. Still I tried my best through the rest of the morning and the afternoon.

This continued for three more days and by the end of each session I felt like I had failed myself. After the third day the pain in my lungs became unbearable. I couldn’t sleep that night. I couldn’t stand, sit, lie down, or breath without a stabbing pain throughout my entire ribcage. I watched the sunrise trying to steady my breathing when I heard my brother Sean get up for work. I walked downstairs and cried to him about how much pain I was in. Sean was a varsity captain for 3 out of the 4 years he played soccer in high school. He brushed it off as a pulled muscle, saying he got those all the time. So I sucked it up and off I went to my morning session without a single minute of sleep. It’s just a pulled muscle, right?

That was the morning the clouds rolled in.

I arrived to practice feeling like I could pass out at any moment. I could smell the rain coming and the heavy air didn’t help my lungs any.

“Lets skip the run this morning, ladies.”

Score. Who even was I anymore? Excited for a cancelled run? The thunder cracked my thoughts before I could work through them and we were all sent home.

Things started to get blurry from here on out. I got home and sunk into my couch. Imagine swallowing a steak knife and then having to dig it back out of your side with a machete. I’m not kidding. The worst pain I could ever imagine had somehow got even worse. I felt an overwhelming urge to cough and flung my body up off the couch to grab a tissue. I don’t remember if I screamed from the pain or cried, but as I looked down into a fist full of blood the entire world went silent anyways.

I called my mom. Thats all I remember.

The next thing I knew, I had a needle stuck in one hand, a jell-o in the other and all of my pain was gone.

Morphine is a hell of a drug.

Continued in my next blog post: “Part 2: Can I Still Sing?”

DS106 1.

The spoon theory! This meme is a classic viral meme where there is a good choice and a bad choice. The woman in the red is the bad choice, the woman in the blue is the choice that is either good or good enough. The man in the plaid is the decision maker. This explains my point of view when I am trying to decide between over-extending myself and using more spoons or being comfortable with the ones I have already used.

Ds106 2.

Selfie with my pet!

This is my cat, Larry. He was a rescue from Tennessee. Ever since I got him we have been attached at the hip. He sleeps in my bed every night and follows me around the house where ever I go. I have two more pets too but I have more pictures with Larry because of how attached to me he is. I never understood why black cats get such a bad rep, because he is the sweetest most loving cat I have ever me!

DS106 Meme 2

Demotivational poster

I made this meme using my own photo that I took from my spring break trip in Punta Cana. I got a good laugh out of it because even though I had a lot of fun, I still feel like most of the time when I take a trip the cost, stress, and physical toll that is taken is almost enough to not make the trip worth it. The general idea of a vacation is to get away from your typical life. Which is possible, but doesn’t come without its own struggles along the way. Can’t forget that sunburn either. Ever.

DS106 GIF

I made a gif from the movie Moana. This is my all time favorite movie and I have seen it probably 20 times. I love the message that Moana sends to children who watch the movie. She is fierce and never gives up in order to save her family and her people. Even when she doubts herself she still finds a reason to push through. This clip is a really cool visual from the movie because it shows how Moana is youthful but still making leaps and bounds as a young woman.

DS106 Home movie gif!

This is a gif of myself and a baby camel in Morocco. I love this video because I didn’t realize the camel was going to (insert whatever noise camels make) when I took the video so it really captures the element of surprise in my face. I love looking back at all of my photos and videos I took while studying abroad and this one will always make me smile.

Daily create:

Something I have learned 

I decided to do this daily create and speak about how much the little things can add up in your life. I have struggled greatly while transitioning home from college. The first few weeks I felt like my world had collapsed in around me. I felt that I had lost everything I worked towards in the last four years including friends, work opportunities, and general life living in Maine. I was sitting on the floor wondering what my next step might be and how I could get myself back living in Maine when I looked up and saw my cat Penelope sitting on the porch in the sun. I wanted to take a picture of her with the flowers behind her and the sun shining. She is so effortlessly beautiful and lives without a care in the world (which I assume I would as well had I been born a cat). I remembered that the last four years I have lived without my pets as a constant while they lived home with my parents and this is my chance to reconnect with them for a while. I had been living in the fast lane for so long that I forgot to take a minute to appreciate the little moments like this.

DS106 Brady Bunch

This was one of my favorite assignments ever! I wasn’t sure at first what photos I would use and I had thought about using photos of my friends and I from moments where we were all caught off guard, but I didn’t want to use any photos without their permission. I remembered I had a large box of baby pictures in my closet so I pulled them out and had a great time going through them. I have always been the “family comedian” and I think my facial expressions in these pictures can validate that. I tried to find photos where my expression can match up to the ones in the original Brady Bunch photo. I hope you all enjoyed this as much as I did!

DS106 – Forrest Gump Old Photo

This assignment really stressed me out at first because I thought “how on earth am I going to get myself to blend into a photo? An old photo??” But as I searched through google and came across a few I found one that I thought might work with the right picture of myself. I tried to think about the angle my head would have to be to make the photo look realistic. I decided on a photo of a woman holding an umbrella with her face tilted toward the side. I cropped a photo where my face was at a similar angle and played around with filters and effects and I was pleased with my result! I had never really tried this kind of photo editing before and even though I find the photo slightly creepy, I don’t think I did a terrible job!

Here is the original photo source 

DS106 Digital Story

For my digital story I added images from some of the assignments I enjoyed. First, I included the Brady Bunch assignment. I loved being able to look through my old photos and find ones that match the facial expressions from the original photo. Next I included the old photo assignment. It freaked me out a little bit to see my face on a photo that looks so old but in the end I think I did well. After I included a photo from my home movie gif. The gif was of myself and a baby camel in Morocco. I liked that I got to take a video that I love and is so personal to me and share it though a gif. Lastly I used photos from my two Medium projects. I love the Medium platform because it is easy to use and the pages look clean once all is said and done. I will definitely continue to use Medium in the future!

What started off as two friends sharing lunch soon turned into a pioneer term for those living with chronic illnesses. The spoon theory.

A woman by the name of Christine Miserandino came up with the term while struggling to explain to her friend what it is like living with Lupus. She grabbed a handful of spoons off restaurant tables and spread them across the table to her friend, telling her to count them. The friend then had to go through her daily routine and take away a spoon for each chore or activity. Christine explained that healthy people have all of the spoons they could ever need, while those with chronic illness or disabilities do not. The goal is to make it to the end of your theoretical day with as many spoons left over as possible. The problem with chronic illness, you probably never will.

I remember first being introduced to this term from a friend who lives with a severe form of narcolepsy. I had confided in her when my illness took a turn for the worse and she told me to read up on the term. I finally had found a way to put my feelings into words and take a deeper look into my own personal energy and how I spend it throughout my day.

When I was 15 I was diagnosed with a disorder called Factor V Leiden, a blood clotting disorder. In future posts I will dive deeper into what it means to live with this disorder and how the spoon theory has impacted my outlook on life. Stay tuned for more posts 🙂