Limited

You’d think by now that I’d post regularly or at least semi-regularly since I kind of told you all I would…or at least try to. I always have this itch to write a blog post since my head is spinning with ideas and thoughts. I have people encouraging me to post and give me positive feedback but even that doesn’t get me to the actual keyboard and type. I can keep telling myself that I will try after the next blog post, to post more. But maybe I can keep trying.

A lot has happened since the last time I wrote but the highlights are that I got engaged on top of a mountain, Ken getting baptized, our upcoming wedding in October, and my new journey to become a certified Christian Life Coach. Four really amazing life changing things happened, and I feel even more truly blessed and loved. I’m trying to be less shy and make friends, but it seems harder than I made it sound in my head. Trying to come out of my shell more has been more of a blessing than I would have thought. Also planning for our wedding this year has me (good) busy.

My mom, dad and I were at the pool in my community in the middle of the summer last year and we met this nice young woman who had recently moved in and some of her friends came in for a refreshing dip in the pool before it closed. We small talked a bit and told them some things about the community where we live. Got to talking about college and education and I had mentioned I never finished my Suffolk photography degree but eventually wanted to finish when the time was right. I told one of the young women some brief things about my health, when she then proceeded to give me some advice and said that I should never limit myself. She kept saying it over and over to me again, really looking my in the eye and telling me to not limit myself. “Do not limit yourself.” She was so determined to get her point across and I was so thankful for that because it stuck with me.

Since then I have been thinking about how I always limit myself because of my health issues. Making friends who I assume I won’t relate to or maybe won’t like me because of my limitations, having my last few college classes like math, science and P.E at Suffolk I have to take that I dread because of my learning disabilities and health stuff getting in the way, getting my driver’s license because I’m afraid I will have to cut my lessons short again like last time due to my bad hip. All these things I have limited myself and not even really thinking that I could get these things done despite those fears I have. It’s funny because I don’t limit myself too much when it comes to getting through a health trial, but I do limit myself when it comes to simple things in life people get through with few problems yet still push through. I limit myself so much to the things I want to do, and she really opened my eyes to trying harder mentally at telling myself to just go for it. Does this mean I make excuses for myself though? I’m not sure. I do know that I cannot do everything I tell myself I can do. I cannot run like my brother Anthony (nor do I have the desire to run, hats off to you Ant for running like Forrest) or be an accountant like he is. I fail to recognize the gifts that I have, that God has given me, which means I fail to use them fully.

Fast forward to a couple months ago when my mom mentioned life coaching. I knew the general thing about life coaching but not the details. I looked into a Christian coaching program and signed myself up. I felt God was pushing me to do this, so I trusted Him and went for the leap. I have about 3 weeks left and an exam and after that I will be a certified Christian Life Coach. I have experienced just about every emotion going through theses courses. Excitement, anxiety, fear, joy, peace, comfort and many more. I can’t quite explain in words what this course has done for me but what stands out is that God has placed me right where I need to be to use my gifts He’s given me and yet gain so much more than I even thought I would, just in the few practice coaching sessions I have done. I think I have an entire section in my brain now full of what I have learned just in the past few weeks. It feels amazing to use not only what I have learned through my past health experiences but also what I have gained in these classes.  I know I have so much more to learn and this is just the beginning, but for the first time in my entire life I am learning something that I actually enjoy. This is something I can see myself doing and something I love doing as well. I am filled with joy and excitement and am humbled by this whole learning experience so far.

This is a pretty short blog post and not all of them will be like this, but I have decided to change (ever so slightly) this blog. This one in particular is more of an update blog post. I have thought about how much I want to write and how much flows out of me so easily with much relief afterwards, and I would rather use that for my book. So, this blog will still have stories and such, but those will not include my past. This blog will be present stories and things like that. I am always open to suggestions as well!

Over and out

Alyssa

Back in the saddle

It’s been the longest gap in between posts since I started this blog. A lot has happened and I’ll share it but it will possibly be in pieces. I re-read my last post just to jog my own memory so I know where to start back up again. Right now, I’m sort of forcing myself to post so it’s all a big jumble and some of what I write I’m almost embarrassed to share. Although I want to it to maybe somehow help other people who may relate to what I feel or write even the slightest bit..

I got my new teeth, a six unit permanent bridge and I don’t really know what to say about it except that I’m so happy with it. Eventually I’m hoping they will feel right at home but it’s only been a short while so time will tell. I need to get another one fixed which is in the front towards the side. It cracked and chipped and is mostly gone. I visited my oral surgeon about a possible (keyword possible) implant. So, Project: Possible Implant is a go but again, possible. Possibly possible..

I still carry fixodent and gauze with me when I go places even though I have permanent teeth. I can’t shake the habit of having to carry around fixodent, gauze, plastic pics, toothpaste and a toothbrush to clean the extra goop that would seep out of the temporary bridge I had. I still have nightmares where some or most of my teeth fall out when I eat. It feels so real.
 I also still take caution when I bite foods and chew, I know it will pass but again, I can’t shake the habit of doing this. I did it for my temporary bridge and even before when two of my teeth were loose.

I’ve been dragging myself back to the gym to exercise and get stronger as well as my water aerobics class which I recommend to everyone if they have the time or have pain or can’t do high impact exercise. A few weeks ago I think I pulled a muscle in my replacement hip leg or something because I wasn’t able to put much weight on it and it’s still not fully better. When I move it certain ways it hurts. Has anyone with a hip replacement felt this before?

Since I had my permanent bridge glued in I’ve still had anxiety. I normally have anxiety. Sometimes daily. But I’ve gotten good at sensing when it comes and doing something about it before it gets it of hand. I figured most of my anxiety that stemmed from having all the dental work done, would simmer down but it hasn’t. It’s different now. With some self-examination I’ve realized that it it’s a much more broad reason. At the time I did actually have anxiety from my teeth being worked on and the mental pain that came with it. That was there. Due to that I think I came about a deeper reason why I felt a sense of loss when the dentist drilled my original teeth down to pencil points and replaced it with a bridge…I felt loss. I felt a deep sense of loss and betrayal. Not by anyone but my something. I still can’t put my finger on it yet and maybe I never will. It’s a loss that has developed and accumulated over the years. Possibly since I lost my original heart. I’m guessing it was around there when I felt I was losing parts of myself. I’ve always been bad at giving things away. Selfishly I wanted to keep everything-toys, clothes and things like that. Even extremely weird things. Wrappers from good memories or objects that should be thrown out. So maybe it stemmed from some other traumatic experience. But I’ve gotten much better and I can give things away to people who need it.

As far as the loss I’ve recently come to notice is the fact that I’ve lost parts of my body and I think now the anxiety comes from me thinking I will eventually lose everything, physically. My heart went, most of my teeth, one hip and soon enough the other hip. I know the long-term side effects of chemotherapy and full body radiation and most of you know that fact of those bittersweet cancer treatments. So you know with cancer treatment there often comes side effects from that. So given those facts determined by doctors, I will eventually lose more of my body. Maybe it sounds dramatic and I don’t expect everyone to understand or even agree. And that’s perfectly fine. Even the brain tumors I had removed felt like a violation of loss. Sounds crazy and maybe insane. But that was mine and they took it. I wanted it out but it was something inside of me that was taken out and felt like a loss. It’s insane and I don’t know why I feel this way about the tumors. It doesn’t make sense.

The frustrating part is what I’m supposed to do with these feelings and it takes over me and covers me like a wave and makes it seem like I’m drowning. Do I ignore them and let the rest of my body eventually be replaced? Because I’m supposed to be grateful right? That I’m lucky enough to be able to get the best care and doctors. Or do I try to figure out the feelings of loss? Beg to God and just pray for help and guidance? Or that I need to cope with it? All of the above? Because I don’t know what to do or what’s even right.

This goes back to the subject of suffering. God certainly has a purpose for me and for all of what happens and for the suffering of course. But the mystery of not knowing what it is yet. I could list a whole bunch of reasons I think it could be but wondering won’t help any. It’s like I’m waiting for that lightbulb to pop up over my head. At times, more than I’d like to admit, I feel I am too young to feel this old.

I write to discover myself. I want to do more than just exist and fight these mental and physical battles. Of all of the battles, trials and difficult times, I’ve never found anything as difficult as my own self discovery. At the same time you’d be surprised at what you’re capable of handling right? I’m sure every person has felt this at one point or even more in their own lives. I’m surprised I made it this far and I didn’t know I could handle this much. But it’s beautiful I have to admit.

Thanks for reading ♥
Over and out

Okay Fine

I’ve been purposefully not posting these few weeks because I have been avoiding all of my feelings. I have been pushing back everything that has happened these past few weeks. I had written part of a blog post and saved it as a draft but when I looked it over again, I didn’t want to post it anymore. It had a lot of anger and sadness and bitterness in it. And I always want to write how I feel don’t get me wrong, but I didn’t feel it was the right thing and it didn’t feel right either.

I have been dealing with anger, sadness and a bunch of other things. I am happy, I have a happy life, a great family and great friends. I couldn’t ask for anything better. I’m content. I just get really tired and worn from all the emotional feelings that come along with the medical things that pop up in my life. I know how to deal with them, the stages of feelings. I was talking to a church couple who have known me since I was a baby this past week. They both asked how I was doing and what I have been up to. We ended up talking about the different stages of how I go through hardships. Sadness/crying, anger/bitterness, sarcasm/jokes, acceptance. Something along those lines, not to be exact. My family knows my stages too so they understand if I get it a bad mood, the angry stage etc.

My point here is that I have been handed a bunch of things at the same time with my health lately. I am thankful I have a great team of doctors to catch things quick and figure out good solutions to fix the problem. My main source of anxiety lately is my upcoming dental work. I am going to be getting a 6 unit bridge on the top front row of my teeth. I previously had the two top lateral incisors bonded years ago back in high school. The bonding lasted up until now which isn’t the problem. Last year my oral surgeon attempted to extract and insert a dental implant in one of the lateral incisors but it didn’t take– there is not enough bone inside my gums to hold the implant. Long story short my dentist and I decided the best plan would be to extract the other loose lateral incisor and do a six unit bridge.

I don’t like to ask for things but I am asking for prayers for this Thursday when I will have all of this done. I have to get past this hard part. There will be other hard parts after the dental work but I can’t do anything but push myself and let things happen the way they’re supposed to I guess. I am sad and I am carrying this burden of anxiety that feels like a mountain. I can’t explain it other than like that. It’s just teeth, I try to tell myself but I can’t convince myself to pretend that this won’t be a big deal. I don’t think I’ve ever had to make this hard of a decision in my entire life. With the heart transplant it was no problem for some reason, I guess maybe it was life or death so that’s different. With this it just feels weird, its a feeling I’ve never had before. I want a smile and I don’t want to have to worry about the loose tooth or the bonding cracking and exposing the pencil point pathetic excuse of a tooth underneath, but that still won’t convince me to think that this will be easy. I will be able to smile at people again and look them in the eye when I talk and I’m so excited for that. I believe that pain is meant to be felt, whether it be emotional pain or physical pain. I do not believe that pain is a bad thing. It just sucks. I plan to post more frequently now but I’ll see how it goes..

Maybe after all this is over I will understand it. Maybe one day I’ll learn to wear my scars like wings, inside and out. For now I just have to be still, I am not running this show.

Thank you for reading ♥

Batteries not included

Remember when you were a child and opening up a present, whether it be Christmas or your birthday, and being so super excited about what was underneath that wrapping paper or in the bag buried in tissue paper? You were either the careful, meticulous and slow present opener or the crazed, energy filled and fast one. I was a slow and calm present opener for I wanted to absorb the experience and get myself really amped up. When you hit a certain age, you asked for an electric toy. A toy that ran on batteries. A remote control car, a Barbie toy that lit up maybe, a game or maybe something completely different.
Sitting in the living room floor on Christmas morning finally getting past the socks you just opened (older now I realized those socks were much-needed, just admit it too) and finally unwrapping the biggest present, saving it for last. You rip it open or slowly tear the paper off of it and see the present and scream for joy which lead to begging your mom or dad if you could open the box NOW! Like right now! You even pulled a “pleeeassseee pretty pleaseeee!!!!” Getting the okay you desperately tried to get the toy out of the package and realize with bigger toys there comes tricky twist ties, tape and sometimes even staples and mini zip ties. You would groan and your little hands would attempt to administer all of those things yourself. My engineer dad would always have a scissor handy Christmas morning and jump to help my sister, brother and I. Wiggling in excitement for him to finish all the tough zip ties, I would be handed the toy back sliding the it out of the box and pressing the buttons only realizing then that it required batteries. Not only batteries but a certain screwdriver but wait what kind of batteries and where DID that manual go?! Groaning even louder this time and looking up at my parents to help me find batteries and a screwdriver and to please help me. Then begins the journey of rummaging through the junk drawer for batteries and the garage for that certain screw driver. Either a hit or miss with that type of thing. Most of the time my parents would somehow find all of those batteries and unscrew the back of the toy, fit those batteries in correctly and screwing it back on all while I watch over their shoulder. Fascinated with how these super human people with invisible capes managed to make my toy work. As soon as my dad would tighten the last twirl of the screw in and I’d see the toy light up and hear it make a noise I would jump for joy and try to reach to get it. Playing with it for not nearly long enough Christmas morning until the kids were called into the kitchen to eat breakfast and get dressed for church. Realizing it now, I hope that I at least thanked them for doing this every birthday and Christmas. For three kids too.
I think back to all of this and it sounds so similar to what goes on being an adult. Just on a much much more difficult level. Since I started to have medical issue after the other and I look back now I see the resemblance of batteries not included. Remember seeing that in the tiniest of print on that toy? “Batteries not included” was always written on the very bottom or in teeny tiny letters. When I went into congestive heart failure in August 2008 which lead to being on the transplant list, I didn’t fully comprehend what was happening. I knew I when they told me I needed a new heart and that was surgery. I was aware when they told me all of the details entailing it. Such as it could take a long while to get “the call” for a matching heart. I knew all of the medical details
(Click for detail info) and I learned and my mom learned as well. We were like sponges, absorbing all the information we could get so we could be the best prepared for when that day the doctor would walk in and tell me they had a match. It all went smooth, they surgery and recovery. It couldn’t have gone more smoothly.
Mentally I was okay as I performed the mandatory amount of recovery days after the heart transplant and physically deal with the pain and removal of the dozens of tubes and IV’s. I was okay. I was okay even for excessively bumpy city ride home from Morgan Stanley Children’s Hospital. I was okay. I was okay when I got home and conquered the step into the house that seemed so much higher than the last time. The pain did not really matter because I was finally home. I pet my cat and I walked around a bit, stiff and sore from the long ride home. I was even okay going up the stairs. Slowly but surely I made it up fine. I was overly okay taking my first real shower. Ecstatic that it wasn’t going to be a sponge bath. When I started to take off my clothes I was not okay. I dropped my shirt on the ground and now that my pants and underwear were already off since I stripped them first, I was fully naked. I stood there looking over every inch and moving parts of my chubby steroid flabs over so I could see my body in its entirety. I almost screamed as I looked at my body in the bathroom mirror. Just minutes before I was thrilled to be getting into the shower that I missed for months and took for granted. I was disgustingly shocked at the view of my body in the already unflattering bathroom lighting. I hadn’t realized it at first but I started to form tears. I only noticed because my vision was becoming obscured. Although I was appalled at the bruises all over my stomach, chest and even parts of my legs, I hadn’t realized the magnitude of the physical damage to my body but I wasn’t crying because of that. It would all go away, the scabs too. What I was afraid of not disappearing was my grief. The grief that I so surprisingly developed in those few minutes of scanning my body. The grief I had for the stranger whose heart was now in my chest. I found myself crying for them. Crying for the loss but now for the current understanding that I was in fact, waiting for someone to die. And then the anger came. The anger that I had not recognized it before. All those months in the hospital waiting and not for one split second realizing that I obviously needed a dead persons organ.
Batteries not included. The batteries I needed to cope with all the emotions with getting a heart transplant was not included. Not in those discharge papers, not in the instructions sent home or the patient handbook I was given. I couldn’t understand what I was feeling. Why had the doctors and nurses not prepared me for this much pain. Mental pain. I wanted to go back, I changed my mind. I didn’t want this anymore. It was too much. I needed the certain screwdriver and those batteries from the junk drawer to fix my hurt. I wanted to back to those simple days of making pictures with chalk in the driveway and riding bikes till my mom called us kids in to wash our hands for dinner. To see my dads car pull up and see who wold give him a hug first. To those sleep-overs with my cousins and the huge pot full of perfect Kraft mac n cheese my aunt would make for all of us and then in the morning would be any breakfast of your choice. I wanted it all back. I still do. I still crave for those summer days in the sprinkler and getting grass stuck to our legs and mud in between our toes. The only worry in the world was getting a scraped knee or elbow from falling on my bike but getting it quickly fixed by mom with a cartoon band-aid and a kiss to make it better. Not having to fight for anything except the best flavored popsicle or the prettiest outfit for Barbie.
Not having to fight the most fist clenching, sweaty armpit, teeth gritting pain. I need those batteries so I can figure out how to cope. I don’t know if I will ever find a way to deal with the baggage that comes with what life brings me. Some days are good and some days aren’t. The feelings consume me as I unburden my past health events. But at the same time I wouldn’t trade it for anything. With pain, I become stronger. I’m not even sure if this theory makes any sense at all, if what I’m feeling makes any sense. I didn’t plan on writing this much and I apologize if it seems excessive. As I post, I am still figuring things out. How to deal with my past, how to revisit the memories good and not so fun. To push myself to get up in the morning and push through whatever I have to deal with that day, physically and mentally. To find joy in this fight. To love myself and to be proud of how far I’ve come. I’m not there and I don’t know how long it will take, but I’d like you all to be in it with me or just listen. To hear me share my stories, rants, complaints, joys, praises, fun encounters etc.

I can share one quick awesome super cool story. And then I might be done. Other posts will be shorter I promise. Probably not… My boyfriend Ken’s mother is friends with a woman who volunteers at a horse rescue shelter and she told me about it and I was hesitant because I used to ride years ago and stopped due to health stuff and especially the hip replacement. In the back of my head I always would like to start again and I still plan on doing so. Ken and I went to this horse shelter a few weeks ago and the first time we just looked around and I talked to the horses and some of the people there. Learned some of the horse’s stories and they were pretty tear jerking. The horses had been through so much and they all had they’re unique story. The second time we went we had been given some horse treats and were told we could pet them if they came up to us. Ken seemed so excited for me but I was still hesitant because it was a huge deal to pet a horse again. I hadn’t in more than ten years. So it was emotion packed but exciting no doubt. It was healing to even just pet them and talk to them. I had such a passion for riding and horses in general. To be near them again was so special and they all had they’re story and some were still recovering. But this place is pretty cool if you know any horse lovers that would want to pet and feed some beautiful horses. Even for non horse lovers too.
Until next time….

Thanks for reading,

Alyssa ♥

P.S
***When I will post:
probably once a week, maybe more so stay tuned. If you have any ideas, tips, suggestions please let me know!

Some posts may not be full of intense feelings, they may be stories or things that I do. The next one will probably be along those lines. Thanks again for tuning in I still have no idea what I’m doing 🙂

           I know I haven’t posted since the first introduction blog post but instead of me giving you a bunch of excuses as to why I haven’t and lie to you, I am going to tell you the truth. I am scared. I’m not scared to tell you all but what I’m scared of is having to face some of my memories and feelings having to do with those memories. I have subconsciously avoided dealing with some emotions and even just the memories themselves lately. I’m talking about the most traumatic, fist clenching painful memories as well as the less painful ones or the emotional memories. The physically painful events and the emotional events. And you guessed it, all having to do with my health. I do have a life other than my health and dealing with that, but that always came naturally. It was my normal, it was my family’s normal as well. I have been forcing myself to face some of these events and go through them in my head but I just end up either getting upset and cry or get angry and cry. I’m not sure if it helps but maybe it does..thoughts? Does facing traumatic memories and events in the past help or do more damage? I know I have to do it anyway in order to keep this blog up and to write my book but what do you think?
      For the actual legit reasons having to do with the delay of me posting is because I got some sort of nasty cold. I’m still getting over it but thank God I’m not coughing nearly as much but mostly just tired. I have been going to the gym since I completed my hip replacement physical therapy and I got a good handle of what exercises I should and shouldn’t be doing (yet) so I gathered up the courage to go to the gym in the clubhouse near my house. I made some (older) friends there since they seem to always wonder what the 12-year-old looking girl with the cane is doing at the gym. I’m always happy to tell my story but sometimes I just don’t feel like talking. I learned that people’s curiosity will actually help spread my inspiring story because I need to do that. I just didn’t realize that’s another way.
      Another thing that has been taking up my time as well as my mom’s is insurance. Now everybody groan with me I know a lot of you know the struggles with that. I have a need for a special type of physical therapy (I’m not sure I want to share what type as of yet) and my insurance doesn’t cover it so it will be a big chunk of money for the co-pays I just don’t feel I want to pay for. So my mom is helping me fight the insurance for it. And when I say helping me I mean she calls and I stay in the room and listen because she is a pro at that certain talk. It may as well be another language to me. Also trying to sort out a  few other medical stuff. So that means lots of phone calls and phone tag. This will happen often…me going off on things and rabbit trailing. Bare with me.

 

 

 

 

 

Bittersweet

Hey! My name is Alyssa Esposito and I’m starting this blog because several people have come to me about it and suggested I start one. I love to write (I am writing an autobiography) and I also feel it may be a way for me to give back in a small way. I never felt that creating a blog was the right time up until now. Before I go on, I’m going to ask if you read my “About” at the top of the screen and then return to this blog post. But to make things easier I will copy it down below…

My name is Alyssa Esposito and I’m a 26 year old aspiring writer and amateur photographer.

I enjoy cooking, writing, photography, photo restoration, and reading.

In this blog you will find posts about:
My traumatic, joyous and painful past health experiences and how I conquered them.
Some how-to’s and tips on my ever growing knowledge of the medical world of which I have lived and continue to survive.
My every day life which include doctor appointments, doctor phone calls, family time and every day travels.
And most of all, the jam-packed, painful truths and innermost thoughts that bury deep inside my head.

I believe my purpose in life is to fight and if I am meant to fight these battles then I have to honor that.
I cannot stop and won’t stop fighting.
Until my duty here is done.

Okay, so that’s a very short description of myself, what I enjoy, what I plan on posting etc. But please keep in mind that I have no previous experience with the blogging world so I may not post a lot or everyday but I will try out different things so I can stick with a schedule or something. So bare with me as I learn and figure out what works best.

Coincidentally today is my 8th heart transplant anniversary. Some years I like to “celebrate” it and other years I like to sit back and pretend its any other day. Not because I want to ignore it but sometimes the feeling are too much to handle. Today is probably one of those anniversaries. Because it’s too long of a story to tell right now ( I plan on telling it in full detail in the future) I’ll give you a link to two articles so you can see what happened 8 years ago, yesterday.
http://www.nytimes.com/2009/06/13/sports/baseball/13gardner.html
https://www.guideposts.org/better-living/entertainment/sports/hope-for-a-homer

But today, around 5am this morning I had gotten the heart transplant surgery. I recognize both days as being significant. Today is hard and I feel the upcoming days inch forward to this point. I even planned on not saying anything in this blog post about it but that always changes each year. It’s a bittersweet day and I recognize the loss and gain of life. I mourn for the loss of a life but I am thankful for the priceless gift.
I do have a lot to say even though I keep to myself and am quite shy. Some of you know me and some of you don’t. And also some of you know me very well and some not so much. But I will try and do my best to open myself up as much as I can because I want to share my past experiences and feeling that go with them. I am only 26 but feel like I have lived a lifetime already. It’s tiring and hard but the most rewarding times have been the most difficult. I cry and get angry like any other person does, I most certainly will not sugar coat any of my experiences I plan on sharing.

For those who know absolutely nothing about my medical history I will put this here:
Leukemia (chemotherapy/full body radiation) 2 months old
Bone marrow transplant 14 months
Heart failure (cardiomyopathy/myocarditis) 16 years old 2008
Heart transplant May 2009
Brain surgery (craniotomy) 2010 and 2011
Hip surgery (core decompression) 2015
Right hip replacement 2016
With a few minor things in between…

If you’ve read this far, thank you! I don’t know what I’ve gotten myself into but I’ll figure it out along the way. I promise my future posts won’t be this scattered!