heypesi - Tumblr blog

[heypesi]

How is it possible to feel so alone when you’re surround by so much love?

How is it possible to feel like you’re never enough when you’ve accomplished so much?

How is it possible to feel like you aren’t doing anything when your health is taking a toll?

How is it that it’s so hard to ask for help when you’re life line is a phone call away?

How do you know you’re life of work living when all you think is how different the world would be without you…

How it is possible want to give up when you have so much life to live..

how is it?

[heypesi]

How is it..

How is it possible to smile so large when inside you feel like the you’re surrounded in darkness? How is it that when you say you’re going to step back or not care, if makes you care more? How is it when you say you’re okay, you know behind the tears you cry you’re not? How is it that when the people who say they love you and care for you and want whats best for you are the ones furthest away? How is it that you and friends continue to grow but instead of growing together, you grow farther, and farther apart? How is it that so many will smile in your face but that the boldness to say things behind your back? How is it when you’re done you decide to stick around because the pain is worse when leaving then putting your sanity in place?How is it that this is happening to me? What did i do?  How is it.. How is it.. these are many of the questions that go through my mind daily. I have been in a weird place. I’m in a limbo because i see myself growing, i see myself maturing, i see myself turning into the person i want to be but instead of being happy for myself i’m worried about how others portray me. I’m worried about who i may leave behind, I’m worried that I’m not doing enough for the people who would not do the same for me. Instead of being worried about myself and my happiness i let these questions play through my head over and over, every day. What ever happened to being loyal to the ones you care about? What ever happened to making others feel they mean something to you? For me, i need that. I need to know that i mean something to the people i care for and love. For me, i need to know there is a loyalty. My life has been filled with doubt for as long as i can remember. I never thought i was enough for anyone. Because i felt that way, i began to wear my heart on my sleeve and care hard for people that i love because i dont want to see myself without them. I do more for people than they do for me which isnt a problem, the problem is when i need the person i’ve done so much for, it seems like they arent there. I do other things to make people happy, i change the way i act or think about things at times just to please the people im around because the person i am is not a sociable person. I am an introvert that is a social worker lol I am an introvert that is vocal about the things that mean most to her like Huntington’s Disease. I am an introvert that keeps her circle closed and close because of her history. How is it that the ones i need to understand that the most are the ones hurting me the most. Most nights are filled with tears because of the self doubt that i have, especially with HD. I cry in the car, at home, in my office, in the shower, in the basement, in the bathroom stall. I try to get others to understand me, especially the ones i love but its hard for others to understand a disease that attacks you from the inside and allows your body to fight itself and to never have control of it. My self esteem is at ground bottom. There is now where else to go. My feelings and emotions are getting closer and closer to where my self esteem is and once i dont care anymore, i dont care and there is nothing to do to change it, and it worries me. I am stuck in a mental mind maze where there is no where to go. How is it that everyone has an opinion on how i should do something, how i should react, how i should change, how i should act? How is it that someone who does not know me at all is bold enough to speak on me like they do? I have had so many negative things said about me in my personal life, my working life, my school life, and my HD life. “Shes never home with her daughter, She shouldn't be so open about HD, She should care so much, She shouldn't worry what other people say about her, She shouldn't let HD affect her now, shes not symptomatic...and the list goes on and on. I’m stuck, I’m alone, and i dont know what else to do. The way i live my life through social media is not me. How is it that people only reach out when you post something on social media? I dont talk to anyone. I have two people that i trust to tell my every secret to and right now, i cant even talk to them. I have people who i can talk to about certain things like HD, like work, like school but only two who i can about it all and more and i cant even do that. How is it that loneliness can be a feeling when you have people you can talk to? How is it that everything you say you fear will be talked to to other people? How is it that self doubt can bring you to a space of darkness? These are the questions i have..

[heypesi]

Why are you following me?

don’t you have anything better to do than to follow me around? i don’t want you here.. every time i fall asleep i pray that when i wake up you’ll be gone. i feel you following me and even though i tell you and fight you to get away, you are stronger than me, you always have been.. there’s times i feel like you have left and left for good and to my surprise, you always come back. the last time i truly felt you hovering and adding weight to my chest was back in high school.. for years, i could breath and i could live my life the way i wanted to.. i felt you following me here and there but i knew how to scare you away for the time. until maybe a little over a year ago, you were gone. now, why have you chosen to come back? why me? what did i do to deserve this? you know what the crazy thing is ? you are able to make up act like everything is okay, like you have a hold over me.. i wake up, get ready for work, do my job well, go to school, get all of my work done, take care of my baby, be in a relationship, take care of my mom and family still with your shadow following and haunting me. why do you have this hold? how do you make me act the way i do? inside i want to scream and just let the tears roll down my face but you somehow have convinced me not to do that. i want to talk about how i feel and why i feel this way but some how you have threatened me that i would be putting too much on the people i love. why do you do this? i don’t understand how you have the power to make me feel so worthless, like i’ll never be enough, like things would be better if i was no longer around.. try to cover my ears and close my eyes but as soon as i let go, here you are. you almost make it into a game. i’ll have a good day here and there and feel the sense of relief, like you are not there then the next day, you're back. this is entertainment to you, i’m your puppet and sadly i don’t know how to cut the strings. you are starting to pull me away from MY life, the life i have made for myself.. are you happy you've done that? are you happy that i fear you? are you happy that you have control over me? getting the news about HD 2 years ago, i knew you’d be back, i just didn't know this quickly. you have tripped me into a dark hole and i feel myself falling deeper and deeper. when i look up, i just see you looking at me smiling like you are proud and happy of the power you have taken from me. you’ve turned me into someone i barely recognize. you’ve turned me into someone that hates everything about themselves, you did this. i’m begging you to let me go, i’m begging you to give me back the power i once had over myself, i’m begging you to leave me alone. i don’t know how much more i can take before i let you take me.. when i try to focus on what motivates me, you whisper in my ear that i’m not good enough, that i never have and never will be good enough. i just wish you’d leave me alone..

#huntingtonadisease #HD #WTFisHD #strongerthanHD

[heypesi]

is that you..?

Hi everyone... i know its been a while since i have written something but tbh, i wasnt sure really what i wanted to write about. i’ve had a few thoughts in my head but then this morning as i was getting ready, multiple thoughts come to my mind every morning, while i’m doing my make-up, made me look at myself for a minute. is that you? is today going to be the day? what stresses do i have in my life? what am i overwhelming myself with? do i look the same? have i been forgetting things lately? have i stumbled more that i usually have? am i able to focus in class? do i feel more angry than normal? have i hurt anyone’s feeling lately? does my mind wonder to places that it has never before? is my work starting to lag? is that you? every day, i have these thoughts, along with many more run through my head. the thing about HD is that, you will never know when it’s going to “hit”. HD is so different for everyone that no one knows. HD is a mystery. yes, we know what gene HD affects and we know that there is no cure and we know that there is only medication to help the symptoms and we know there are studies going on to find a cure and we know that we cannot do anything to avoid HD from hitting. that’s scary though, isnt it? think about it, lets use my mom’s case specifically. my mom had a “boom” that really brought on her HD. my mom was a single mom for years of 3 kids then all of a sudden within 3 years, 2 of your kids decided they wanted to move to their dads. all the stress, anger, sadness, decided to mix together just perfectly then BOOM, HD symptoms. isn’t that scary to think? youre just living your life perfectly “normal” and all of a sudden you can’t work, even though you have a masters degree, you can’t drive even though you have a child at home and have places to be, you can’t take care of yourself like you should. you used to do your make up every day, make sure your hair was done, went to get your finger nails and toes done. now, because of HD, you can’t sit still long enough or you cant work your arms like you used to. isn’t that crazy? isn’t it crazy that so many people like me, 24.. even younger, have to live their life walking on egg shells because we do not know when it’s going to “hit” ? isn’t it crazy that people who know they are positive for HD or are at risk have to worry every if the choices they are making today like going to college? isn’t crazy that people positive with HD or at risk may not even want to be in a relationship? isn’t crazy that people positive with HD or at risk have to make the decision if they want kids, and even from that how they want to “have” kids? isn’t it crazy that there are people like me who didnt know HD ran in their family and now that we know, its our whole lives? isn’t it crazy that there are people that have known HD has been in their family for generation after generation and have to make the decision, if 1, they want to find out and 2, when they want to find out? isn’t it crazy that you have to worry not only for yourself but for your siblings because they havent tested to find out? isn’t crazy that you wish and pray everyday that you are the only one with it so your siblings never have to go through the thoughts you have everyday? isn’t it crazy that you thought since youre the oldest sibling that you are the strongest? isnt’ it crazy that one result can change a persons life forever? i know i have HD, and isn’t sad that i have to worry every single day if my daughter will be positive? isn’t it sad that i’m thinking about more kids in the future and possibly using IVF and having to tell my daughter that her siblings will never be at risk for HD like she is? isn’t it sad that i look at my daughter sometime when she falls or coughs from choking a little when she eats to fast and wondering, is that you ?  isn’t it crazy? isnt it sad? i ask myself these questions consistently.. but the question that haunts me minute after minute, 24/7, is that you? 

[heypesi]

the process..

so recently, i’ve been asked “why havent you talked about your testing process yet?” or “does your blog talk about your testing process?”. to be honest.. i just have not been ready to really discuss my testing process. I feel as if when i do, i am finally admitting that i am positive for HD. in my previous blogs, i have said “i have HD” but never have i said that i am POSITIVE for HD. This is something mentally, i still do not know if i have accepted. i talk/advocate for HD every single day, all my MSW research has been about HD, my friends know more about HD then they probably need to.. tbh lol but i think i’m ready. i think i’m ready to talk about my testing process. now, my testing process is probably one of the worst of the worst. i dont want to write about my process to scare individuals that are looking to test but i do want individuals to know the warning signs of what a “bad” testing process looks like. where do i begin... soon after my mom tested positive in October of 2017 her doctor at the time, a local neurologist, told my siblings and i “it would be best to get tested.” She began to tell me that because I have Adrianna that it would be selfish if i waited any longer to get tested and when i was ready, to call her for the script. now, i did not know any of the warning signs because prior to my mom finding out, we have zero idea of what HD was. i was not aware of the Center of Excellence in Pittsburgh, i was not made aware that i should have received counseling prior to testing and prior to receiving my results, i was not aware how much anxiety and fear i would face waiting for my results, i was not aware of anything. one day at work, i was sitting there thinking about how the doctor was right and i needed to get tested for my daughter, if not anyone else. i made the call, the call took 2 seconds.. i called, requested the script, no questions asked, no advice, nothing. a few days later, the script came in the mail and it sat there for a little. i did not tell anyone i wanted to get tested since my mom just tested positive not even 3 weeks prior to this. i made 3 appointments before i decided to go to my local labcorp to get the blood work. i went on my lunch break because i figured it would only be about a 5 minute ordeal.. i’d get in and out, to my surprise lol that was not the case. my mom’s doctor failed to mention that most blood work facilities do not test for HD because 1. it is not very common and 2. most Centers of Excellence are doing the testing because of how the process should be properly done. i was at the labcorp for over an hour and a half.. filling out paper work, going back and forth on the phone with their head quarters because they weren't sure what test to use, what paperwork to fill out, ect. after it was finally finished, the wait came began. i waited and waited. i called to check in multiple times to the doctors office to see if my results were in. what was only 4 weeks, seems like a lifetime. in my head, i knew i was positive already. i figured everything bad always happens to me so why would HD be any different? i was the sibling diagnosed with a thyroid issue, the one diagnosed with diabetes, the one who was sexually assaulted. i have always been the ONE. again, no one knew that i got tested so this was something that i was dealing with alone. i was afraid, i wanted to cry, i wanted to hate the world, i was upset. finally the day came that i got the call. now, when i got the call, i knew.. i didn’t  want to say i knew because i felt it, i knew because of how the call was handled. i was called by her office and was told that my results were in. i was told that she wanted me to come in for an appointment which i agreed to. everything seemed to be normal until she said “you will need to come in and complete new patient paperwork..”. right there. that was all i needed. i knew i was positive. they didn't have to tell me, i knew. why would i have to come do new patient paperwork if i was not going to be a patient? if i wasn't the tone of “i feel bad for you” in the person’s voice, it was that one sentence. i hung up and i just stared at the wall in front of me. i went and told my boss i needed to take a personal day and i left crying. i sat in the car before i decided to go in the house. walking in the house was like walking through a door to another dimension. i saw George, looked at him and cried and told him what had happened. of course, trying to comfort me, he was reassuring me that “i’m sure they have everyone do the new patient paperwork, that doesn't mean anything” obviously, by the look on his face he knew. he knew i was positive and he felt what i was feeling but he also knew he had to be strong for me because inside he and i could tell, i slowly began to die. i called my dad a few hours later and told him that i tested. i didn’t tell him what had happened because i could not imagine how much pain i would put him through. i kept my mouth shut. of course, the woman on the phone who was making my appointment tried to tell him i had to wait 3 weeks for an appointment and in the sternist voice i could pull from within me, i told her this is my life and i will not wait 3 weeks. she needs to get me in the next appointment because the last 4 weeks have been the worst experience of my life. i got the call right after new years.. what a great way to start right? she was able to get me an appointment the following Tuesday and i asked my dad and George to come with me. My dad drove us because i knew i wouldn't be able to drive myself home after the appointment. the ride to the appointment felt never ending. i had the first appointment of the day and i got there 15 minutes early. the waiting room was big but boring. sad, boring colors surrounded me as well as an awful fake wood wall paper. we sat there and we sat there. she was over an hour late. an hour. obviously this woman didnt care about me or my life. she didnt care what my results were. she didnt care that this would be the worst news i would ever hear in my life. she didnt care that i was waiting to find out how i will live the rest of my life. walking into her office, once she finally arrived was in slow motion. as we sat there George, me, then my dad, i felt it in the room. i’m not sure how to describe what “it” was, but it was there. she pulled out my papers and said “i’m sorry but have tested positive for HD.” she then goes on to read what the paper says that my results came in on, word for word like i have ANY idea what she is talking about. to be honest, after i heard what i already knew, everything around me was a blur. it was official, no more “maybe i’m wrongs” no more “maybe just this time i’ll get lucky:” it was official, i had tested positive at 43 repeats.. i had HD. I let out a gasp and i cried. i didnt have words and i didnt want to be in the room anymore. my dad and George began to ask questions, questions that i paid no attention to except one. there was one question that George asked that gave me hope until i realized that this doctor had NO IDEA what she was talking about because i began my own research after. George asked “what are the chances of Adrianna developing HD?”. now.... (inhales a deep breath) IF THIS DOCTOR KNEW ANYTHING ABOUT HD, SHE WOULD KNOW ITS GENETIC WITH A 50/50 CHANCE, THIS WOMAN TOLD GEORGE, MYSELF, AND MY DAD THAT ADRIANNA WOULD BE LESS LIKELY TO DEVELOP HD BECAUSE SHE IS A MIXED RACE. WHAT IN THE ACTUAL F***. that is the only question i remember being asked because it had to do with my baby.. now you may be asking, how could it get any worse? WELLLLL, it does. the doctor decided 5 minutes after she told me i was positive for HD, to do a cognitive test. now for those who do not know what a cognitive test is, it consists of a few tests with words, colors, numbers.. it tests your memory, speed, ect. picture this.. you just get news that you have tested positive for a terminal neurological disease now you have to take a test? so she does the test, mean while im in a complete daze, checks my reflexes, my eyes, mouth, tongue, ect. then goes to tell me i failed my cognitive test, that i will be symptomatic way before my mom, that because i’m diabetic, my left side of my body is already lagging, and a bunch more BS. after the test, i left and went to the car and just stared our of the window. George and my dad came out about 10 minutes later and then our ride home began.. so for those who wanted to know, that is how i tested positive for HD. i will talk in another blog about, wait for it, how much more terrible this doctor is... i’m sure many of you won’t believe that it gets worse.. BUT it does. again, i’m not trying to tell people not to get tested or not to trust your local neurologist but i just want people to know the signs and to speak up about it. My name is Ashley Pesi, i have a CAG repeat of 43 and i am positive for Huntington's Disease. 

[heypesi]

It’s been a while..

Hey guys.. sorry it’s been a while since ive written one of these but I just.. idk I have just been feeling like blah when it comes to HD. Everyday I live my life and it revolves around HD. I am no different from anyone else who has HD around them or has tested positive for HD. Within the past year, I have dove right into the HD community and I have really, what I feel like, have made a difference. As you all know, especially who knows me personally, I am always wearing my HD bracelets, I am wearing an HD shirt whenever I can, I am telling/talking/educating people on HD. I love that I am apart of this beautiful community. But lately.. idk lately I feel as if my heart isn't in it. I continue to advocate and I continue to support individuals in the HD community but lately whenever I see a post, an email, a picture, anything, I just feel blah. I don't feel sad, or mad, or upset, I just feel blah. My brain is telling me, you can do more, you can share more about HD on social media, you can get to group more, you can reach out to the community more, and the lists goes on and on. I am currently the co-chair for the Fundraising Chair of the NYA and I am so thankful that I was able to get the opportunity. I love what I do and I love my position. This isn't something that I ever want to give up, at least being apart of the NYA. Again, recently though I feel as if I am not doing enough. I see my friends/the HD community always posting and that is great but seeing that, makes me feel as if I'm not doing what I need to do. That I put this on the back burner instead of having it up front with school, work, and family. I feel bad that I cant do as much as i’d like to do. I feel like I am letting people down, the NYA, my Board, my friends. Recently there was a car show in Pittsburgh and I wanted to go. I wanted to go to badly because the HD Fast Track car was there, but I wasn't able to because of school work. Now, that, not sure why, hurt me extremely bad. I feel as if people in the community, especially ones that I am closer with judge me because they are doing more than I am and that feeling is the worst. Now, i’m not saying that is happening but that's what I feel. I worry. I worry more than I should lol I just want my HD community to know that although I am not always around, or posting, or talking, I care. I care so much that I cry at times because I always feel as if “i could tell one more person about HD, or if I could get into another study for HD, or if I could..” If only I could. I wish I could. I wish I could do more for the disease that has taken over not only my life, but my mom’s, my siblings, my boyfriends, my best friends, my daughters, my dad’s life. I.. guess we all wish we could do more but there is a burning in my heart that I hate I cant.

[heypesi]

Do you ever just feel alone..?

hey everyone.. i know i’ve been slacking alot on my posts but school, work, internship, baby, and life have just been very overwhelming lately. Now, before i start writing my post, i want to let everyone know i’m okay. i’ve just been feeling this way lately and i figure writing it out may help me.

so have you ever just felt alone? when i mean alone, i mean alone. like alone in the sense that you feel empty? nothing seems to be going the way you’d like? you feel as if you have to compete against others for a spot in the people’s lives you love? you feel as if you come to second to things you feel as if you should be first? you want to cry but when you lay down to do it, no tears come just the feeling of alone? that is what i’ve been feeling lately. now, this is not the first time i felt the way i do. back in high school was the first time i truly remember feeling this way. the second time i remember feeling like this was finding out my mom had HD and the third time was when it finally hit me that... i have HD. Nothing, this is the first time in all my blog that i have came out and said “i have HD”. I’ve talked about testing positive but never saying i have it. this is a big step for me. 

no one ever wants to admit that there is something wrong with them. no one wants to here you have a “fatal genetic disease”. no one wants to feel as if every day they are alive they feel as if they aren’t doing enough or they are a disappointment. no one wants to feel the type of regret one may feel about having a child that is at risk for this fatal disease. 

i truly believe that my mind works in a way that many others does not. i am very open minded when it comes to things and the way i think and consider options, and opinions, and the way others feel is something i noticed is not similar to others. i love the people i care about. i love them so much that i feel very possessive about them. this is an issue i struggle with. my boyfriend, that’s my boyfriend. point blank. my best friend? is only my best friend. my family, my family including my child is the reason i live. my child? my baby refuses to say mama and i hate it..  again, this is the way i think and i hate that i am this way. because this is the way i feel, it makes me feel alone because i almost feel “abandoned” by them at times. now this is nothing they are doing, but this is how i feel.

growing up, like i said before, i truly never felt “alone”. now, as a child, i feel as if i honestly felt this way but i did not know how to put it in words. i am not going to sit here and blame things i’ve been through because i am stronger than that but it’s almost like if i cant blame them, i blame myself. i blame myself for not being stronger, more independent, living my life to the fullest, for loving too hard, to putting too much on my plate, just to name a few. 

as i sit here, my best friend just facetimed me. on the call, i just felt weird. i really cant explain the feeling i felt. just weird? not because of her but because of me. 

ever since finding out about my HD, i knew my life would change but i promised myself i wouldnt let myself fall into these “funks” again. i hate this feeling but nothing expect time can fix it. i want to cry, i get worked up over little things, i get smart and have an attitude over things “normal” people would just brush off and that scares me. it scares me that it is my HD. myself, i know that this is just the type of person i am but is it really? or has it been the HD in the shadows, just waiting to be discovered? 

idk. 

*shrugs shoulders*

i just feel alone and as much as i want to hide, be by myself, and cry i also want to be held, told that i mean something to someone and no matter what may happen i will not be alone. 

again is that word though.. alone.

alone is such a scary word but alone is the only word to describe how i am truly feeling. i know this feeling will fade back into the shadows until it decides to come out and follow me. 

A  L  O  N  E. . . 

[heypesi]

A note to my future self..

A note to my future self.. Dear Ashley, As you’re reading this I hope you understand why I am writing this. I am writing this letter for a few reasons. I want to start off by saying that you are such a strong, independent, loving, insane, beautiful, strong-willed individual. I want to start off by saying that your Husband (by now you should be married to George) and your children (by now you should have more children) love you. As I am writing this letter, on December 21, 2017 at 11:15 AM, you are an amazing mother, girlfriend, sister, daughter, friend. You are working your ass off to complete you master’s degree at Pitt, working a full-time job to support your family along with having an awesome internship. Just jump back up to the last sentence… A MASTERS DEGREE FROM THE UNIVERSITY OF PITTSBURGH! ASHLEY! This has always been your dream. You’re dream to attend Pitt, ever since you were little and papa took you to your first Pitt Football game. Although you may feel as this is a struggle right now with balancing work and baby, you can cross attending the University of Pittsburgh off your bucket list. I am so proud of you for kicking ass and following your dream. A husband! You have a husband! WHAT?!? Remember those nights praying to God to send you someone to love and support you? Well He sent you George and look where you are. You have an amazing man who will stand by you and catch you when you fall. You have a man who is an amazing father to your children. You have a man that loves you like he has never loved anything before. Your prayers were answered! A kid! Right now, you have Adrianna and she is the most beautiful, healthy, silly, spoiled almost 2-year-old every. Right now, you’re upset that Adrianna doesn’t like to say mommy but as soon as she sees you she still runs to you. Adrianna looks up to you every single day even if you feel as if you may be failing as a mommy. Right now, Adrianna is missing you, yes, and you’re missing her but when it is all said and done Adrianna is so proud of the mommy you are and showing her that it is important to follow your dreams and never to give up or to give in. Right now, you have an amazing family. Your sister is 17 and your brother is 20. Both are out there achieving their goals and getting shit done. You don’t get to talk to them as much as you’d like but you know everyone is busy. You love your siblings so much and hate when you guys can’t see eye to eye about things. You helped raise your siblings and it’s hard to understand at times that you are only their big sister, not their parent. I want you to know that you have been working on stepping back from that role and loving and caring for them from a distance. Mommy, oh mommy lol so last year she was diagnosed with HD. We had no idea what HD was and when we finally found out, it was devastating. You knew something was going on with mommy over the past few years but had no idea what. You began to shut her out and get frustrated because of the things she did. Finding out mommy had HD has honestly brought us as a family so much closer. Yes, she still gets on your nerves, daily, lol, but you understand that she’s supposed to. You understand that although she has made mistakes in the past, you still love her unconditionally. You have given her the greatest gift and her biggest motivation, Adrianna. You are working on trying to help her live the fullest life she can and you’re doing a great job. Now, you Ashley. The reason I am writing this letter.. last year.. you were also diagnosed with HD. You were scared. Not for you, but for Adrianna and George. You cried, a lot. You hid your feelings and never really wanted to show that world that anything was wrong. You joined an amazing youth group, the NYA and went to HDYO camp and that was life changing for you. At these moments, you finally felt accepted. You finally felt as if you can be your complete self without being judge. You’ve been afraid for so long to show the world who you really are because of the fear of being judged but guess what Ashley? You did it. You have grown into an amazing person and I don’t want you to ever forget that. You are such a strong , beautiful person and you forget that at time. You are so worried about everyone else, thank Daddy for that lol, that you forget to care and worry about yourself. You want to take the fault and pain from everyone else but youre only one person Ashley. I want you to know that you have changed and influenced so many people around you even though you feel as if you have failed. I want you to know that you have not failed us. As I am writing this letter, I am proud of the future self I have become. I am proud to be apart of the HD community. I am proud to have so much hope and faith for a cure. I am proud of the woman you have become. I am proud of you. Now, hopefully when you read this, you will understand why I wanted to write you this letter. Remember to love yourself Ashley.

I love you so much, Love, Ashley

[heypesi]

I’m Sorry..

Tonight’s post is really out of the ordinary with the days and the times I post but do you ever just start cleaning, listen to pandora and just emotion hits you? The past few days ive really been down and depressed about my life with HD. I’ve really been to myself, not really wanting to be around anyone, talk to anyone, just wanted to be alone to cry. Anyways, as i was cleaning, the emotion of feeling sorry just hit me. When i say the emotion of sorry, i am talking about me feeling sorry about many things. Things ive done, feeling sorry for others, feeling sorry for myself..just feeling sorry.. so here goes my rant. 1. I am sorry for the person i have become. I am very proud of myself and my accomplishments and understanding that i need to do things for me and only me. i am sorry that HD has made me selfish when it comes to caring about others at time and putting other things off to focus on me. For a long time, i wanted to make everyone happy. i wanted everyone to like me and if i felt unliked/unwanted i would do anything in my power to turn that around. At this point in my life, i realized regardless what you do, good or bad, not everyone is going to like you. I have become a person that is a lot stronger. I hold myself on a high pedestal and will not settle for anything less than what i know im worth. I’ve pushed my depression from my life before HD away and with this news, over a year ago even though it repeats in my head daily, my depression is back. i may seem like this super busy mom who loves every single day of her life and portrays as everything is okay! and having HD doesnt bother me at all because of how much i love to advocate but i hate this. i hate it all. back to some earlier blog, i hate the HD has become my life. i hate that i have a terminal disease. i hate that i may not want more kids. i hate that i put my child at risk. i hate that my boyfriend feels as if he cant talk to me because he may not know how i will react. i hate that my boyfriend will probably not be able to live the life he dreamed about with me because of HD. I hate my best friend is scared to bring HD up. I hate that this is an elephant that is always in the room. but, I am happy HD has turned me into the person it has. HD has taught me to live my life to the fullest. to always have hope and never regret. HD has taught me to have a passion and love for something that will literally kill me. HD has brought me into an amazing community with amazing people that i may have only met once or twice but the love we share for each other is undeniable. HD has changed me into a person that i never thought i’d be. I never thought my mom and i’d have a relationship like we do. my siblings and i also. HD has taught me to put little things to the side and just love. love my family because we do not know how much time we have with them. i love my family more than words and i want them to know that. 2. im sorry for becoming selfish. this goes off of my first sorry but i really am proud of becoming a person who still loves hard and cares deeply, but i know that the choices i make in my life will be my choices. I will come to a point in my life where HD is going to take over. Honestly, i’m scared as hell for that day. everyday i pray that my results were wrong and im going to get a call saying the lab messed up. everyday i wonder if this is the day HD is going to hit me. this is a constant worry i face. im sorry that i have become selfish when it comes to me caring for myself and not worrying as much about other people and their opinions. 3. im sorry for the people that i have pushed away/left in my past. in my life right now, i have honestly, 3 individuals besides my family that i talk to either daily or weekly. this isnt a one person thing either. this is just checking in with each other, noticing when one is upset or is sad, this is just sending memes because it made you think of the other person. again, back to the first im sorry, this goes along with it. I have alot of people i consider friends but i realized why do things for friends who arent there to support you or check on you, or when you tell them that your mom was diagnosed with HD or when you got those results dont even check to see how youre feeling, or not seeing how your daughter is that everyone obsesses over? not blaming everyone because its two ways but after a point when youre the only one, you give up. I’m sorry if this hits as if you are one of the people i left behind. nothing personal. just after finding out about HD, i really only want to surround myself with positive vibes and happiness. 4. im sorry for the ones who dont know how to talk to me or approach me since the HD. I know this is hard for you and im sorry. i want to let you know,i understand talking about HD is hard, believe me. writing this blog takes more out of me than youd think. i want to let you know, i want to talk about it. i want to answer questions you may have about it. if im having a bad day, i want to talk about it. i dont mention things sometimes to you guys because i dont want to put this all on you. 5. im sorry that my mom feels as if she did this. my mom, while i was growing up, made some shitty decisions but as parents we do that. my mom was a single mom who has a masters degree, worked her ass off as a teacher to support us and get us whatever we wanted. i want my mom to know, although i hate HD and wish this was something that neither of us had to deal with, i never have blamed you. Mom, you changed and touched so many lives while you were a teacher. you lived for your job and students and i want you to know that you did make a difference. mom, i want you to know that i’m sorry you have ever thought i hated you or did not love you. never once have i ever stopped loving you. you have given me the gift of life and i am forever thankful. This blog is just something i needed to write and get things off my chest. this was something i felt i needed to say and express because i feel as if people do not truly understand me and instead of asking, assume. I have become a truly amazing person and i’m so proud of myself. this is something that i never thought i’d ever say about myself. Although i hate HD and everything about it... HD has turned me into the person i am today.

[heypesi]

Terminal.

Hi everyone. Sorry it’s been a while since i’ve posted on here but tbh, i really wasnt sure what i wanted to post. I had a few things in my mind and i decided on this one. I really want to advocate and bring awareness to HD and i dont think there is any better way then discussing it first hand.. this is my HD story. 

Now, in the dictionary neurology means “ the science of the nerves and the nervous system” and terminal means “ situated at or forming the end or extremity of something” now, combine that. The science of nerves and nervous system that is forming the end. This is exactly what i thought when i was told i had HD. I will discuss in a later post my experience of finding out i had HD but today, i really want to focus on how it feels.

Really take a second and think how it would feel to be told “you have a rare terminal neurological disease that has no cure” Right there, i can pick 3 major points, rare, terminal neurological, and no cure. Again right there. How would you feel? Would you feel sad? scared? alone? mad? angry? or maybe all them? i want to tell you, in that moment of hearing those words, you feel numb. you feel nothing. after hearing those words you blur everything and everyone out around you. I remember hearing her say those words. Going in, i assumed i had it but for it to be proven, i, i went numb. I sat there and stared. Eventually a cried but tbh i dont know what i was crying for. After finding that out and the numbness starts to go away for the time being every worry you have ever had comes into play, your whole life, your future, everything hits you at once. You feel alone. you feel as if your life is worth nothing. you feel numb. Numb is a word that i will repeat alot because with it being almost a year since finding out, i still feel numb. 

I remember leaving the appointment and being in the car just thinking about my life. Thinking do i want to continue it. thinking is it worth me going to school or trying to be apart of different things. i think is it worth getting up every day. It is worth being in my daughters life because i may have given her HD or that she is going to have to watch me turn into this new person. Is it fair to stay with the love of my life and to know this man that i love more than life itself will have to take care of me until im gone. it is fair to my parents and siblings that they will have to watch their daughter/sister turn into a new person. I thought a lot and i still do.

I watched a video on facebook the other day and it hit me close. the woman in the video was from Canada and she said something along the lines about how her mother was “trapped within her own body.” it scares me. 

I am so scared. As i write this, i am crying because i have no idea when or how this disease will hit me. As i write this i am thinking about everything i do and worry is that the HD coming. I trip, i stumble over my words, i forget something, i act out and say something i regret. i want to let you all know living with HD and worrying about HD is a full time job. You worry that everything you do or say is the HD coming. 

I am scared out of my mind. Who wants to completely change as a person? who wants to be trapped within themselves and not be able to do anything about it? who wants to know their minds, thoughts, feelings, emotions, are still there but your body will not let you show or express them.

Im scared.

I worry every single day, every second of the day for me. Thats only for me. I worry every half a second for my mom, my dad, my siblings, my boyfriend, my daughter, my future kids. I worry.

I want to live a normal life. My boyfriend and i made so many plans to grow old together before finding out about HD and i know unless a cure i will not be able to be apart. I feel like my whole life is paused. I feel like although my boyfriend loves me and wants to be with me that he deserves to live the life we planned with someone else. I dont think its fair that because of this terminal f****** disease that my life may be over before i know it. 

I am so hopeful for a cure and i advocate every single day but in the back of your mind its hard to be hopeful because you dont want to be disappointed if it doesnt happen. I... i’m so thankful for the friends i have made through HDSA, NYA, HDYO and i do what i do everyday for them. They give me the strength because they are the only ones who know exactly what i am going through and i do not have to be ashamed. I get strength from the support of my friends and family because i know they love me and want to support me no matter what, even if i feel like they shouldnt. 

Terminal. Why does terminal have to be such a strong, cold word. Why does just saying terminal want to make you cry. I hate that word. But, i know there is hope and every individual in the HD community is amazing and i want to let you know what i am doing, why i dont give up, why i dont let myself stay on the ground when i have fallen or wanted to give up is because of every single one of you. 

[heypesi]

Her Mother’s Daughter

Hey everyone! So this blog is going to be about this amazing documentary that I began to watch at last year’s HDSA National Convention called, Her Mother’s Daughter. On November 10th, the film will be released on http://hdsa.org/HMDFilm and I highly recommend watching it.. Now I say I highly recommend you to watch it like I’ve watched it before.. I ATTEMPTED to watch and maybe lasted 5 minutes in. At convention this year I had the amazing opportunity to meet Alison and her grandmother. I want to thank Alison for giving me the motivation to want to push forward and not to give up. I want to thank Alison for showing me that there is so much more to life and not to take everything for granted. I want to thank Alison’s grandmother for giving me the motivation to want to continue and to love and to fight for HD. Now I want to talk about the premiere at convention. Going into the ballroom, I really wanted to watch it. I was giving myself pep talks and motivating myself. As I sat down at the table with some of my friends, I felt a lot calmer. I felt as if I could do this. Now prior to this, I knew the film was about Alison, her mother, and grandmother but that was all I knew. I was really excited to see this film about this amazing young girl who has fought so hard and a smile has never left her face. At this point as I am thinking about all this the lights start to dim and I see the screen starting to play the film. When I tell you not even 5 seconds into the film I cried, I did. I cried but it was not to the point that I felt I could not handle it so I pushed through. During the 5 minutes I was in the ball room, I felt sad, happy, angry, just so many emotions that honestly I didn't know how to handle them all. I felt so much guilt and I think that is what put me over the edge when I finally lost it. I felt guilty because this young girl has so much to fight for every single day and although she may have bad days, she continues to push. I felt guild because ever since she was young, her mom has been sick. I. .I just couldn't imagine that feeling of barely knowing my mom or the person she was before she got sick along with losing her mom to the battle of HD. At this point, I had left the ballroom crying. I do not think I have cried as much as I did since my Papa Carl had passed in 2013... I was so overwhelmed with emotion that I, I could only cry. The president of the NYA Maryann saw me leaving the theater and followed me to a room and just hugged me. I have never had a hug like the one Maryann had given me. This hug was different. This hug was an “ I know what you are going through and I will be here to help and love you” hug. At this point, I remember my body almost going limp and I just stood there hugging her and cried. I honestly do not even remember exactly why I was crying but it was for everything. Ever since finding out my mom and I had HD, I really never cried about it? I jumped right into, okay what do we have to do and how can we try to fix/change this. At this point, I hated my life and Maryann made it okay. She knew and she knew let me go and I am so thankful for her. Now after a few hours passed, I was okay. It wasn't until I got home and really thought about convention and my breakdown. I realized I was very lucky that I knew my mom as the person she was. I realized I am lucky to know my mom as the person she is now. I realized that I am lucky to have my mom here because when it comes to HD, so many people do not have their parents anymore. I realized I was lucky that I could still call my mom and talk to her, see her on birthdays and holidays, and hug her whenever I wanted. I realized that I am still one of the lucky ones. I took things my mom did for granted and I hate that I didn't realize this a long time ago. My mom and I never had a super close relationship because, like I said in previous posts, I had to help co-parent for a very long time but I put that aside. I realized that no-one is perfect and parents make mistakes, we all do and I especially realize this being a parent myself now. I do want my mom to know though, I was never upset or angry that I tested positive for the HD gene. I want her to know that I never hated her because she passed me the gene. My mom gave me life, a pretty damn good one, and I am thankful for where I am now. I want to thank my mom for making sure we had a nice house, new clothes and shoes, and always having food to eat. I want to thank my mom for making us her number one priority and never made us feel unimportant. I want to thank my mom for all she has done being a single mom working a full time teaching job but still always making it to every sport, music, school event we ever had. I know I may not say it a lot mom but I do love you and appreciate everything you have done for us. Now, I want to let anyone who has lost a parent to HD, is a caretaker to a parent with HD, is at risk for HD, have tested negative or positive for HD, or just lives around HD to  know that you are my hero and even if we have not met yet or have met briefly, I want to let you know I love you.

[heypesi]

What if my whole life was about..

Hi everyone! so this weeks post was just something i have been thinking about lately. As I was sitting in my generalist class a few weeks ago, we did this ice breaker, “My name is .... what you know about me is... If i stopped here, you wouldn't know that...” was what our teacher had us do. So mine was “ My name is Ashley and what you know about me is i am an MSW COSA student that currently works for a non-profit. If i stopped here you wouldn't know that i have been traveling across the US lately to try to be in studies for a terminal disease my mother and i have along with my siblings and daughter being at risk for, Huntington’s Disease.” Now when you read this, for most people reading my blog and know me personally, from the HD community, or have read my blogs in the past wouldn't really be surprised i said that but the more i thought about it, i began to become concerned. I began to become concerned because i realized every time i talk about myself, introduce myself, talk about my interests/hobbies, what i do in my free time, what did i do all summer, why do i travel, i realized its always Huntington’s Disease related. Now, i do not want this to come off that i do not like to advocate because i do every single day, i embrace my disease and i will talk to anyone until i am blue in the face about it but, i do not like that HD takes over my life. In the exercise above i could have said so many other things like i am the oldest of 3 kids, i have been with my boyfriend for 4 years, i have an amazing 1 year old daughter, i have spent well over $1000 in make-up with what is on my dresser, i enjoy going out to eat and trying new restaurants. I really could have picked anything, but instead, i picked that i have this terminal disease that may not affect me personally now or my siblings or my daughter but does my mom. I dont love that i have HD but i love the community that HD was able to make me apart of, i love HDSA, i love every single person i have met through the NYA, i love the traveling i get to do, i love the advocating i get to do, i love some many things about HD, but i realized i am letting HD define who i am. I am always talking about it. It’s something that is in my head no matter what i am thinking about. I could be thinking about what i want on my pizza or where did i put my phone charger and HD is playing apart. If i forget something or feel as if i am stumbling upon my words, or i trip, the first thing that comes to my head is this is HD. I hate that this what i do but i mean it’s not easy to not think like that. Finding out i have HD has made me into an amazing person. Because of HD i have become a person that i would have never guessed in a million years i’d be. I learned to let go of little things because down the road, when will it matter? I learned to only be around and let in people who have a purpose for you and are willing to do as much as you do for them. I learned to love myself and the people behind me. I learned not to judge a book by its cover because you may have no idea what a person is truly going through. Now like i said, all this is great but i realized that HD is starting to define me. I want to be “normal” i do not like that i have to decided should i finish my masters degree and enjoy a career i will have or worry more about trying to spend as much time at home with my daughter that i can because in the next 20 years i may not remember who she is. I hate that i have to talk to my boyfriend and get him to understand once, HD kicks in i will turn into someone he may not know and that he will have to be my caretaker. I hate that no matter if i want to have more kids naturally, or with in vitro, i will be judged either way. I hate that everyone who may or may not know me, knows me as Ashley with Huntington’s Disease. I realized I just want to be Ashley.

[heypesi]

Although it may be hidden..

Hi everyone, I know it’s been a while but I've been busy... sorry lol but this post, this post has been something I've been thinking a lot about and also me reflecting a lot on my past and thoughts and feelings I have and am feeling.. The other day was World Mental Health Day and I have recently listened to the song 1-800-273-8255 by Logic. Now.. to start off.. I am not suicidal nor have I thought of hurting myself or anyone else in anyway but I do want to just talk about things in my life and how I've been affected that has made me question life. Recently, obviously from all my other blogs, HD has played and will continue to play a very, very large part in my life. Now since finding out not just about my mom and myself but worrying about my siblings and their results, my dad, my stepmom, my grandparents, my boyfriend, my daughter, I have been dealing with depression. Now, you could look at me, most people that are going to read my blog would never in a million years guess that I am dealing with depression but the thing with depression is, it is expressed in many, many different ways. Now lets backtrack a little bit and start at the beginning of my depression cycles. As a child, I never had a care in the world and depression was never an issue. After my parents divorced, I was young. I honestly was unsure what was going on but through it all, both of my parents loved me and supported me so things were never “weird” or at the age I was at, I never noticed. Fast forward a year or 2 later, my mom remarried to my sisters father. Now, I am going to discuss things that many of you may have no idea that I went through. Through the years I have opened up and I freely talk about my experiences as a child because my goal is to let kids/teenagers/women know that it is not your fault. It’s not good to keep the feelings of hate and distrust in because it will build at you and you will become depressed, anxious, and honestly, hate a lot of things/people.  At a young age, I want to say about 7/8 maybe? It started. when I say “it”, I am referring to the sexual assault. This was happening by someone I was supposed to trust, I was supposed think of this person as a “father” figure. My step dad sexually assaulted me for years. I never said anything because to be honest, I had no idea that this was “bad”. When I was maybe 10/11 my mom’s husband was arrest for sexual assault on another teenage girl. Again, I had no idea that this was bad or even knew what sexual assault was. It wasn't until high school in health class we really started to discuss what sexual assault was and I just remember being in 11th grade sitting there thinking like “damn.. that's me.” That, that was the first time I truly felt the sense of depression. I felt alone. I hated going to school. I hated leaving my room. I cried and I cried and I cried. At this point, I still had never told anyone what had happened to me until I transferred schools and decided to tell my parents. Along with feeling the way I was, I did not have support from the people who were “my friends”. Instead of having a support system from them, I felt betrayed, I felt lied to, I felt so alone that yes, suicide came to my mind. I remember sitting in my room with a razor blade just looking in the mirror. I stared at myself for what felt like hours just crying. I just remember putting the razor blade down and walking away. I’m not really sure what finally made me walk away but I had to strength to do it. Fast forward to HD and depression. My depression now, it’s pretty hidden. I am able to put it to the back of my mind until I am ready to have it come out. I do not show it at school, at work, or at my internship. I do not let friends or family see it either.  I do not let it come out until I just need to cry. Crying really helps me cope. Recently I have started to write in a journal to help get thoughts out of my mind for the moment so I am able to come back later to read them. My depression makes me feel overwhelmed at times and sometimes I feel like I cant do it. When I say I cant do it, i mean everything. i mean i feel like i cant get out of bed, i feel like i am a terrible mother, i feel like i cant take care of my baby, i feel like i am failing at work, i feel like i may never graduate, i feel as if my boyfriend doesn't love me, i feel as if my parents do not care about me or acknowledge things i am proud about or decisions i have made, i feel like HD is going to hit me and my life will be over. This happens. Again, this is how depression affects me but this is not the same for everyone. I am able to pull myself out of my funks and work to my worth and for me to understand my worth and my meaning. Back in high school, I was in a dark place and I still deal with issues from then. Like now, I have terrible separation anxiety, I cannot be alone. I deal with being possessive of things with my friends and my boyfriend. I work through this everyday and I am getting better. As i have gotten older and now that i have a child, i know everything i do is not just for me but it’s for her. i want her to have a role model that has never given up through the good and bad times, i want her to have someone that is strong and always willing to help. i want her to want to be like me, but better. Sorry... this is a lot of information i am just throwing out there but this is me writing just like i would be writing in my journal. I do want to say, anyone dealing with depression or thoughts of harming themselves or anyone else, you are not alone. You do not have to deal with this alone because there are people out there you would never guess who have or who are currently dealing with depression. Speak up. You are worth it, a thousand times worth it <3

[heypesi]

That one line..

 So have you ever listened to a song and in the moment it is passing through your ear you feel like your whole life just stops.. well that recently has happened to me. The feeling I got when I was listening to this song just made me feel, to be honest, I'm not really even sure how I felt. I felt happy, I cried, I felt cold and warm at the same time, but overall, I was overwhelmed. Recently, I was listening to Pandora in the car one day on the Never Shout Never station... yes, I went through an alternative music stage in my life and I still really enjoy some throwbacks here and there. So, I decided after work one day to drive around for a little and see what would pop up to listen to. As songs played, I would screen shot it so when I got home I could download it to my apple music and have it saved! Obviously, when I was driving, so many memories came back from middle school and early high school but instead of being focused on the lyrics, I was focused on the memories. Back in middle school and like freshmen year of high school, being young, you truly do not really listen and understand lyrics until you have sat down and really listened. So after driving around for a little and enjoying my throwback jam session, I went home and decided to download some of the songs I had listened to. I downloaded songs like Check Yes Juliet by We the Kings, ** Fun fact: I crowd served at their concert at Warped tour lol, Stay by Mayday Parade, and If it Means A Lot To You by A Day to Remember. Then, I downloaded the song that really hit me. I sat there and listened. I didn't react at first, I just listened. I listened to this song over and over again while tears began to develop and form. In my head, i’m just sitting there like why in the actual f*** am I crying. I’ve listened to this song in my past so so many times and I have never felt this way. I honestly never knew a particular song could overwhelm me as much as this one did but I realized back when I used to listen to this song in particular, I had nothing to compare it to in my life. In middle school and high school, my life was nothing compared to where it is today. In middle school and high school the biggest issues I faced was my top 5 on Myspace or who stole my song or are we going to go the South Hills Village and walk around on Friday night or should we go to Ice Castle instead. At that age, I thought every person I was friends with would still be my best friends when I became the age I am now. I never knew I'd suffer from severe depression and absolutely hate my life and feel alone. I never thought that the individuals I loved, my friends, would turn against me and bully me. I never thought that I'd graduate HS because of how I let my grades go, let alone go to college. I never thought I’d go to CalU and deal with some of the shit I had to. I never thought I'd find the love of my life and my absolute best friends while being in college. I never thought of joining a sorority, ever. I never thought I'd second guess joining a sorority because of the bitchiness and drama that surrounds it, although it wasn’t always bad. I never thought I'd be pregnant my senior year and even graduate. I never ever thought I'd have a baby as young as I did. I never thought of grad school, especially at Pitt. I never, ever, ever, ever thought my mom would have HD and that I would test positive for that terrible f***ing gene. I never realized that not only was I fighting for my family, I had to fight for every single person that lives with or at risk form HD. I learned that this disease is much bigger than just me and mine and I realized this disease became an us. This song, I realized, I had so many reasons to relate to it now. When I say song, I mean to say the chorus. Not that the whole song didn't hit me but the chorus... damn. That damn chorus made me think of so many things, especially my mom, my brother and sister, my daughter, and my boyfriend. The song Your Guardian Angel by Red Jumpsuit Apparatus. Now, I could go on and write a lot, I mean a lot more but I really just want to end it with the line that has grown to mean so much to me. “ I will never let you fall. I'll stand up with you forever. I’ll be there for you through it all. Even if saving you sends me to heaven.”

[heypesi]

How would it feel..

How would it feel to be alone? How would it feel to feel as if you are not enough? How would it feel thinking you never get anything done? How would it feel that no matter what you do, you will be judged? How would it feel judged about things that are assumed? How would it feel to be told you have a terminal disease?.... The past few months have been rough. Rough in the roughest sense of the word. Things were great! I had a beautiful, healthy baby girl, I graduated college, I had a full time job upon graduation, I was accepted in the grad school of my dreams, and I was just happy. Obviously, daily stressors and things played a part but nothing that was overwhelming. Then October came.. October in 2016 was one of the worst days of my life. Finding out that HD one, ran in our family and two, finding out that my mom had HD hit me like a ton of bricks. Everything was still very new and honestly is still very new. In January 2017, my personal life changed. My life literally spun in a million of circles and everything that seemed to be going great in my life changed. I changed and I mean I had a right too, I guess.. I found out I was positive for HD. At 22, a recent graduate, a new mom, working an amazing job, and going to school to improve my future just seemed to disappear. I did not know how to react. I did not know how to feel. I felt alone and that no one around me knew who I was anymore because to be honest, I didn't know who I was anymore.. I put so much on my shoulders and I care way to much for people and instead of worrying about my and my family’s well-being, I was worried about what other people would think of me. I have always done so much for people and I felt like a failed so many because of my unknowing. I felt it. I feel it everyday. I sit in the room alone, when everyone is having fun, and I cry. I don't really know what I am crying for though.. I cry for my mom, my siblings, my boyfriend, my daughter, and I pitty myself. I have learned through many different HD events that I CAN pitty myself and hate myself as long as I know I will not be stuck there and if I feel as I am, I know my resources. I feel judged every single day. I'm sure we have all felt judged but how do you think it feels when you judge yourself every single day about every move you make and worrying what people have to say ? I hate when people assume. One of my biggest issues I have with people. Yes, I go out on weekends and enjoy having fun with my best friend, my boyfriend, and my family. No, not every single thing I do has to involve my daughter, BUT my daughter is my first priority and always will be. Really for a second, really think to hear you have a terminal disease? Really think for a second to try to feel and understand what it feels like to have a mother with a terminal disease? Again, really think about going to grad school and paying thousands and thousands of dollars a year and in 10-15 years you will never be able to use your education.. REALLY REALLY sit down and think about how it feels to feel alone no matter of how many “friends” you thought you had. This is the second time in my life that I truly realized the “friends” I thought I had are the one that are usually judging you or really don't care. I have 1 best friend, I have 1 amazing boyfriend, I have 1 beautiful daughter and I have honestly 2 friends that no matter what will be there and still check in once a while to see how I am doing. That is 5 people out of the friends of Instagram or facebook, or out of all the contacts in my phone. Obviously I don't just go around and tell people “hey I feel depressed, care about me” but I know with the people I do have in my life, I wouldn't have to do that. When it comes to my daughter, my daughter is my world. Without her, I know for a fact I would have hit rock bottom a long, long time ago. How would it feel to know that you have given your daughter a 50/50 chance of receiving a terminal disease? How would it feel to feel regret every single day knowing your child has this chance? How would it feel to possibly not want to have anymore kids knowing in the past you wanted a huge family? I live with this everyday. My mom was diagnosed after my daughter was born and because my mom was adopted, we had no idea HD was a thing. How would it feel to be judged that you even had a kid that has the possibility of having HD? How would it feel to hear others talk about people with HD shouldn't have kids because they are just pushing the disease along? I hear and feel these things pretty often. Surprisingly, most from the HD community.  Through this journey that is no where near over, I am learning to love myself and my decisions. I am learning to let the negativity not stay around as long. I am learning to talk about things rather than keeping them in. I am learning that people will always assume and judge but I have to be confident in my choices and decisions when it comes to myself and my daughter. I am learning that, take a pen and write this down, quote me, EVERYTHING I DO, I AM DOING FOR MY DAUGHTER. Adrianna has and will always be my motivation. I am working as hard as I can so I can show Adrianna that you can push through anything and come up even stronger. I love my life, my family, and my friends and right now, I am okay. I am much happier than I have been in a long time. I am stronger knowing who my motivation is I am willing to push until the day I die for my family. But again, really take a second and think how would it feel...

[heypesi]

Backbones

Today I kinda want to take a break from talking about how shitty HD is and can be and talk about love and support. Of course I have my family, no doubt, but without the people in the photo above, I’m not really sure where I’d be. Now, not everyone who supports and loves me are in the picture butttt this most are. I want to start by thanking every single one of you. You all have been by my side through thick and thin, aren't afraid to tell me when I'm f*cking up, let me call or text you and tell you how much my life sucks at time. I honestly do not think I’d be able to do this without you. I remember the first time I met every single one of you and when we really became close. Ronnie, Smurf, Deonte, and Keeshon.. lol The moment I knew we were going to be close was the first Christmas I celebrated with you guys, George and I weren't even dating yet. I was over and we all were cracking up about how you all “flirted with girls” lol I don't remember who said it, but Smurf.. Smurf they came for you lol. “My name is Sean and my social security number is..... I have a credit score of..... I am a current Mechanical Engineering student at WVU.... I like long walks on the beach..” At that moment, I knew you all accepted me. We may argue or not agree on things but in the end, you guys are all my brothers and I love you all more than you know. I support you all through what may be going on in your life and will stand by you no matter what. Ronnie, Mr. Hard Headed, I may not agree with everything you do or say but I love you and support you through every single decision you make. I am so proud of you killing it up SRU and cant wait to be at your graduation. Smurf, I love you so much. I am so so proud of you and how you do not let things bring you down. You’ve been through things that many people cant overcome but youre out here killing it! Taking amazing care of yourself, applying for jobs and even considering grad school. I want to let you know I have your back through it all. Keeshon, keep doing what you are doing. Follow every single dream you have because the sky is the limit. I will support you through it all. D. Oh D lol you are the most motivated person I have ever met. You are literally like the brother I never had. You are always asking how I am and looking out. You are such an amazing person and you give me the motivation to keep doing what i’m doing.  Brad, well Brad, you were a packaged deal with Sean sooo.. sike lol No when we all started going out with each other and how insane you are lol like charging people to get into a house party up WVU.. that was a free party... cool Brad, cool.. lol KAYEMPERK!! Now, you were a packaged deal with D. We weren't close at first but man idk what I'd do without you. You are seriously one of the most strongest, independent, selfless person I have ever met. You care about people more than you care about yourself. I want to thank you for checking in on me and making sure I’m cool at times. You always know when I'm bothered based off of a social media post lol I want to let you know that as much as you care for me, I care for you. I will be here to love and support you through every single thing you do. I am so so so proud of you and the woman you are growing into. Now, I may be crying while I write the last two... Joi Ann. Oh Joi Ann, where do I even start with you. I remember meeting you at Kennywood in the bathroom and then from there we blossomed. We started calling each other while working the rides, to me picking you up and taking you home from work, to us getting our nails done. We were pretty close but we weren't best friends yet. I remember being in the hospital being told I was pregnant and for whatever reason you were the first person I called. No thoughts, just called and asked you to be my baby’s God mom. You didn't believe me at first, I don't think anyone did lol but you said yes without any hesitation. At that moment, I knew you were my best friend. From then to now, it is insane how much we have grown individually and together. When I say you’re my best friend.  You are 100000000% percent. You have been there for me, put up with me and my feelings, tell me when to shut up and really helped me through more than most people know about, well that you and George know about lol I trust you with my life and all my secrets and I know they will be kept safe. I remember you telling me you needed a ride to work so you sent me your location. 1, I thought you were in the hair store lol.. wrong place. As i’m about to walk in you tell me not to cry butttt I came back to you and started bawling my eyes out. I have never had a person love and care about me as much as you have. You were getting an HD ribbon tattoo with my initials... my parents wouldn't even have done that for me.. lol I just want to let you know everything you do never goes unnoticed. You are such a hard working, loving, determined, strong-willed person that will never let anything bring you down. I love love love love you so so so much and honestly want to thank you from the bottom of my heart. ps: youre stuck with me because your initials are tatted on me too.. lol I love you Joi Ann. Finallllllly, last but no least, the biggest butt head of all, goes to the best, strongest, silliest, craziest, loving, side kick of mine, my amazing boyfriend. George Antoine. Now, there are 2 stories of how we met soo we’ll just leave that out lol. Sooooo I just want to start of by saying how much I love you and how in love I am with you. I could not imagine my life without you in it. You have been my backbone from the beginning and honestly, without you, I know I’d be in a very dark place. You and Adrianna give me life. You two are the reason I work so hard, you two are the reason I do not give up, you two are the reason why I truly know how to love. BA, before Adrianna.. lol, I knew from the first moment we kissed that I loved you. I said I love you first and I just want to let you know I do not throw that word around. TBH, I really hate the word love so when I told you I loved you I meant that with everything in me. I want to thank you for never giving up on me. I know I can be hard to handle at times and may even seem like “us” isn't worth it, but I want to let you know that everything you do I notice and appreciate. I may not express how thankful I am at times but just know I am thankful every single second of the day because of you. You, you blessed me with the most beautiful gift in the world. I know you saying Adrianna came because I was having “baby fever” but God has a plan for us and Adrianna was meant to be here. You gave me the gift of determination and hope. Adrianna gives me the determination to push myself and want to do better for her than myself. She gives me hope in the HD community. I never want her to experience what I will go through one day so I am so so so hopeful there will be a cure. You do so much for her and I and I don't think you realize how much you do. You give us so much love and care that we know we will never be alone. You make me feeling like the most blessed woman in the world because I know I have a man that will give us the world. I want to let you know that I am so proud of you and everything you are doing. You are my best friend, my back bone, the love of my life, and my soul mate. Ever since you have entered my life, you have made it better. When I found out of my HD and my mom’s you never have left my side for a second. You make me look at the bright side but will let me hate myself if that's what I need to do. I cant explain how bad I feel either. It is going to be hard watching the person you love go through something that no one has control over. You will have to watch me change into a person that you did not fall in love with and I want to let you know I think about that every. single. day. I want to thank you for not letting this scare you away and to be by my side. I love you so much George Antoine. I want to thank you all for what you do for me and want to let you know so much I love and appreciate you all.

[heypesi]

In 1965..

In 1965 Charlie Brown’s Christmas was released. In 1965  gas was 31 cents, the average new house cost $13,600, and a new car cost around $2,650. In 1965 Mary Poppins was released, The Beatles and The Rolling Stones were the most popular musicians, and Lyndon B. Johnson was the President of the USA. Along with all of that going on in 65′, my mom was born. Now, for the longest, I had no idea what I am about to tell you. I honestly did not know until right before we found out my mom had HD. My whole life, I never thought anything was out of the ordinary. My nana told me as I was older that she had miscarriages but never thought anything of it. I always wondered why there were no “new born” pictures of my mom around the house or in photo albums because my nana loves to put everything in photo albums.. even the first picture I colored and the first letter I mailed her lol. So in October of this year, I was on the phone with my nana and we were talking about my mom’s doctors appointment went and I told her how the doctor brought up Parkinson’s or HD. I told my nana it couldn’t be HD because it is genetic and I know for a fact her, my pap, my uncle, and their parents did not have HD. The phone was quiet for a few seconds and that was the moment my life changed. Like I said, I had noooooo clue this was ever a possibility, I never wondered why I didn’t really look like them or anything because my brother actually resembles my uncle. I never wondered this was something that my family went through and now will go through. My nana said “oh, didn’t your mom ever tell you? She was adopted…” I was shocked. I had no words, no emotion, no anything. All I could say was that I had to go. I was driving when she told me, thankfully I was almost home. I just remember everything being a blur and calling my best friend and boyfriend because I honestly could not believe what I was just told. I felt lied to, I felt betrayed, I felt alone, I felt like I knew nothing about who I was, I felt alone. I was upset because my mom knew and I never understood why she didn’t tell me. I talked to my dad not too long after and he told me he heard it before but my mom had never said anything to him, and that was her husband. I did not understand any of this. I didn’t understand what was happening. I didn’t understand what was going on in my mind. I eventually calmed down and asked my mom why she never told us.. she really did not have an answer which shook me more. I got in touch with my nana after a few days of calming down and just asked her every question that popped into my head. My mom was adopted in Washington County at Catholic Charities when she was 6 months old. Her adoption was closed so we have zero information on my mom’s case and because it was closed, she would never be able to get the information. At this point, my worry is to get my mom’s medical records or the records of her parents. My whole mood changed after the phone call because I am know realizing that HD may be a possibility. I was mad. I was seeing red. I was just worried because of my baby. If my mom tests positive, I could and if I do, my daughter could. As a mother, you always want to protect your children. You never want any harm to come to them. I just cried. I cried a lot. I felt so betrayed and alone that I needed to be alone. (at this point, we didn’t even know my mom was positive) A few weeks passed and my mom’s results came in she was positive. I was okay with the news, as okay as you can be learning your mom has this disease. My sister called me right after my mom got her results. I was supposed to be there but I had night class. I remember her calling me 15 times and texting. After I finally called her back, I could barely understand her. She said “Mommy has it! She has it..” I sat in my car and cried. I wasn’t mad, wasn’t angry, I was okay. Once things calmed down, I decided I wanted to do the Ancestry DNA test. I wanted to know what I was. Growing up, I was raised very Italian and Polish. I thought I was German because of my grandparents buttttttt who knew at that point. A few weeks after I sent the test out, I received the results at like 3 AM. I remember being super nervous to open the results and deciding if it was something I wanted to do. I slowly read down and my results were 46% Slovakian, 18% Irish, 15% Italian, and 12% British. (Head Scratch?!?!?!) I was really like “WTF?!?” Irish and British? HOW SWAY???? This was really a life changing moment. I grew on how to make pasta, pizza, red sauce, haluski, and stuffed cabbage.. now bangers and mash and fish and chips?! woah. I hit my boyfriend so hard yelling “IM IRISH!!!” his response.. “…okay? (Jay-Z voice)”. I was so happy to finally know who I kinda am and put a piece of my puzzle together. <3