Thursday, December 29, 2011

A Big Thanks

The last few days have been pretty uneventful. I have spent much time on my couch resting with tummy troubles. Writing a post about that is so not interesting and I think this may be the last post of 2011. So, I have decided to write this post about something else much more meaningful. I dedicate today's post to everyone who supports me in my fight. First I would like to acknowledge my mom and my grandy and poppy. They do so much for me. I also want to thank my dad,my sisters, and my friends for being so patient and supportive with me. Next I want to say Thanks to everyone who sends me uplifting messages. Those kind words I read really make a big difference to me. They really keep me going and remind me that I am not in this alone. Thanks everyone for the kind messages. I want to give a special thanks to those who donated to my fundraiser. Especially Helene and Marc Saperstein, Debbie Meany Janusee, Laura Coppola, Debbie Michelle and Chrissy Baccellieri. I Thank you all from the bottom of my heart for your generous donations. I love you and can't thank everyone enough. I am really thankful to have such a wonderful support base. I hope everyone has a wonderful healthy new year. Let's make 2012 a great year.

Tuesday, December 27, 2011

todays post

The holidays went by so quickly.  I cant believe it. I hope everyone had a nice holiday. I enjoyed Christmas with my family at my grandparents house. It was nice even though I slept through a lot of it. For the last few days I havent been feeling so well. I have been feeling very tired and weak. I am happy that I am off from school. I really need the time off. I think the time off would do me some good mentally. I hope I can do something over break and not just sleep away the time. I tend to do that sometimes because being asleep is easier than being awake. Although the pain is still there when I sleep, its nice to not have to deal with it. Consciously at least. The downside is Id spend so much time sleeping that time seems to just pass me by. Time that you can never get back. I cant wait until I am out of pain so I can enjoy my time awake instead of dreading it.

Friday, December 23, 2011

My letter to Santa Claus

I know this is a little late but like many others, I have been too caught up in the holiday hecticness to write my  letter to Santa. So here it goes.

Dear Santa,
It is that time of year again where kids send you their Christmas requests. Although I am no longer a child at the age of 19 years. But I hope you will listen anyway. There is only one thing I want for Christmas this year. It is not the latest ipod, nor expensive clothing or jewlery. The only thing I want is my health back. I have been sick for so long. It has affected not only me but everyone who cares about me. It makes me so sad to see them so hurt and helpless. I want to feel what it is like to not be in pain and how it feels to walk on my own. I want to see my family cry tears of joy when they see me instead of the tears of sorrow they cry when they see my suffering. That present would be better than anything I could unwrap. So please Santa grant my Christmas wish.

Tuesday, December 20, 2011

Final Stretch

I am in the final stretch of finals. Thank God. I have been working hard studying this whole semester and am so ready to just chill. Though the chillin wont last too long because over break I need to start preparing for the new semester. I am a bit anxious about next semester because I need to take my math class. For those of you who dont know. Heres a math equation that can explain why. Math + Lyme = :( . Lyme makes things all jumbley in my head. Lyme makes it more difficult to think clearly. Most in the Lyme community know it as Lyme fog. Very unpleasant. But no matter what I will definately do my best to get through it. I will not worry myself too much though, because that never does anyone any good. Plus, I dont want next semester to ruin my break. Tomorrow is my last final. It is computers. Overall I dont think I did too poorly on them. To me the only thing that is important is passing. If the saying what you put into things is what you get out is true then I should atleast pass. I guess we shall see.

Saturday, December 17, 2011

Everyday is Halloween

As a child you at somepoint wish that everyday was Halloween. You get to dress up as you please, get free candy, and wear cool masks. For lyme sufferers, everyday is Halloween. Not in literal sense obviously, but in the way that when you are living with lyme you are always wearing a mask. It really sucks how when you are around people you have to hide how you are really feeling on the inside. From my experience with the illness and talking to others about their experiences, I have concluded that when we go out we feel obligated to pretend to feel fine around others. Most people with Lyme don't look sick but are suffering greatly on the inside. So if we act like how we feel, people dismiss us as drama queens or attention seekers. Therefore, we kinda just suck it up, put on the mask and parade around the streets like nothing is wrong. When someone asks us how are you? we respond good or fine just to avoid having to explain how we are really feeling and then get the looks of disbelief. It gets eshausting to pretend all the time. But, after so many years of suffering, you kinda get used to it i guess. It's better than having to justify how crappy you are feeling.

Monday, December 12, 2011

I dont even know what to call this...........

I have spent the weekend home and am having a difficult time going back to school. I am so ready for break its not even funny. I am feeling under the weather adding to the wanting to stay home feeling. I still havent gone christmas shopping. I feel so blah. I just wanna be able to lay out with my dog and not worry about anything. I always put so much stress on myself. It cant be healthy. On the flip side it is what keeps me motivated. When i feel the pressure I cant just sit around. It makes me get off my ass and study or do what I need to be done. That would be great if I didnt feel so shitty and need to just rest for a while. Its a contant inner conflict.

Friday, December 9, 2011


After such a crazy day I am glad to be home. Especially to see my dog Skutch. The doctors visit didnt go as good as I expected. The doctor wanted me to ween down on my pain meds. The same pain meds that gave me the ability to get off the couch and go to school. I dread even thinking about being off of them and back on the couch in agony. I convinced him to keep me on them for atleast this month. Its such a shame that a few drug seeking patients ruin it for those who really need it. Anyway, it is nice to be home for the weekend and having a bit of time away from all the craziness of finals week. Tonight I had a nice time out with my friend and my mom. We went out for pizza and then walked around a store for a while. It was good.

Thursday, December 8, 2011

Crazy Day

Yesterday I discovered when my teacher said final on Thurday she meant Thursday as in today not next Thursday. FML! I had to spend all night cramming for it and wake up early to take it. Not Fun. So I go to my class to take the final and it was not as hard as I expected it to be. That would be great if I havent spent the previous 12 hours totally freaking out. So now that this final is over, I only have to worry about 4 more. Atleast I got more than a day to prepare. Lesson learned. Never assume anything.
I have an appointment later with my pain doctor. Nothing spectacularly out of the ordinary. I hope he can tell me something to make the pain stop or atleast lessen a bit. I hope so. I guess we will see.

Tuesday, December 6, 2011


Feelin like crap today. The rain outside doesnt do much for the spirits either. My throat and lungs feels kinda tight and i feel very lethargic. Meh. A lot of people at my school are sick and supposidly there is pneumonia goin around. super meh. If I get that im skrewed. My roommate and suitemate are sick. Luckily my roommate isn't as bad as my suitemate is. Thank god for clorox and hand sanitizer. I dunno what i would do with out em. Its an overall meh kinda day.

Monday, December 5, 2011


Physically, today was not one of my better days. My good friend the weather decided to change drastically again. However, noone around me would have been able to guess that. Even though I was feeling quite crappy, pain with a side of nausea, I tried to keep myself in a content mood. I learned that if you start dwelling about how bad things are for you, things will only be worse. It is really important to remember no matter how crappy you may feel, you can get through it. Whether it be something small like passing a quiz or something major like fighting an illness, if you keep it in your head that you will be able to get through, then you will. It is also important to remember that you always have someone there cheering you on.  Your friends, your family, your school, even your community. That is one huge thing that keeps me fighting. On the days where i just wanna throw in the towel I talk to my friends or family and then I realize all the support I have. I have support at school, home, my community, and even across the atlantic ocean. I really don't know where I would be without them.They are the ones who keep me going everyday. It strange because I always get all the credit for fighting. I don't deserve it because the truth its.. it is my loved ones who are fighting the fight. They lift my spirits, keep me motivated, and help me with whatever I can not do on my own. Hell, I know if I had a doctors appointment in China tomorrow my supporters would be by my side. That's what really matters in life. Unfortunately, it takes hardship for you to see who your real friends are in life. When the storm comes your real friends will stand by your side and help you fight through it. Not desert you for their own gain. That is not a real friend. I do not care how popular they may be or who they are. If they leave you when you need them, they are not a true friend.
I wrote this post in dedication to all of those who have been right here at my side fighting Lyme. Thanks guys I love you all!

Saturday, December 3, 2011


It is December and many people are preparing for the holiday season..My family and friends ask me often what I want for Christmas. I always tell them the same thing as I have for the past 5 years. I want to feel better. In reality I know that is a stupid thing to say because there is no magic buton they can press or pill they can give me to instantly stop my suffering. But, I say it anyway because in my messed up logic I figure maybe if I repeat it enough I will feel better. Anyway I encourage everyone to donate during this season to a cause that matters to them. Whether it be an animal charity, those less fortunate, or even Lyme disease causes. Most other causes get a lot of publicity and Lyme disease causes are left hidden. Those suffering with Lyme would really appreciate the kindness. Personally, in the spirit of the holidays I have donated to a number of organizations such as the local food bank, toys for tots, and of course some Lyme disease charities.Another thing to remember especially during this time of year is spread the kindness.Take for example my post "a little kindness..." those people who stopped and took just a small fraction of time out of their day to help me. It made a worlds of difference. It wouldnt kill anyone to hold the door open for someone, or ask someone how they are and genuinley care, or help someone with a disability open a door or anything else small like that. It would be so appreciated by the people on the recieving end. Plus it feels really good to make the difference.
...Today it was an emotionally exhausting day for me. It was one of those days where I just felt tired of suffering. Luckily, I have many good friends that cheered my up. I really appreciate that. It made a worlds of difference to know I have a team of people supporting me. I have many friends in Sweden and even though they are an ocean away they too really lifted my mood. Tack så mycket =) This brings me back to my earlier point. If someone looks like they are having a bad day, take the time out to cheer them up. Especially during this time of year. Thanks for reading.

**** It would be really appreciated if you post something kind you did for someone else in the comments for this post.*****

Thursday, December 1, 2011

But you don't look sick.....

This statement is one of the ones that urk me the most. So much so that I have decided to dedicate a post to it. I understand sometimes people mean it to be genuinely supportive and for those people I will say thank you but that is not the right statement to say. Especially to a Lyme sufferer. That is a phrase we commonly hear from medical professionals who don't believe how much we are really suffering. Therefore, when we hear that from anyone else, we rightfully draw the conclusion that you do not believe that we are really suffering. One of the parts of Lyme disease that makes it worse than some other conditions is sufferers usually look "normal". Despite the "normal" appearance on the outside, your inside is being invaded and attacked. It makes you feel levels of terrible that you can not even imagine. It is extemely irrating to hear that comment also because it makes the sufferer feel like you do not take them seriously. Ever heard never judge a book by its cover. Usually that saying is geared toward something that looks not so pleasant on the outside being quite nice on the inside. But in the case of Lyme disease, that phrase is applied oppositely. It's bad enough we feel we need to justify ourselves to medical professionals for help, we dont want to have to justify our suffering to our friends too. Next time you are looking for something to say to a Lyme sufferer. Say I am here for you.

Wednesday, November 30, 2011

A little kindness goes a long way

Being in a wheelchair can present many obstacles when going about your day. Most of normal everyday things like stairs, doors, hills, and uneven pavement are some of the more impossible obstacles to overcome on your own. Unfortuantely, it is almost impossible to avoid these obstacles. For example, on my way to work, I encounter two hills four doors, a staircase, and a stretch of pot hole infested sidewalk. Unfortunately, I can't rely on my friends for help with getting to work because I go to work early in the morning and feel it would be selfish of me to wake them just to get me to work. So I make the journey on my own. I do pretty fine making it toward the end of the main campus. I roll with my breaks down to help slow my chair on the hill. The real problem occurs when i cross the street. It has not much to do with the actual crossing of the street. That part is ok. It's when i make it across. The sidewalk at the other end of the crosswalk is blocked by a staircase, which common sense tells us that a wheelchair can't make it up the stairs. So, what am I to do? I go onto the road to avoid the stairs. Ordinarly this wouldn't be to bad except the road has more indentations than a slice of swiss cheese. I don't have any other option so I awkwardly proceed onto the road. I need to get to work after all. I am now on the corner of the shoulder of the road next to the sidewalk attempting to get up the hill. I feel extremely awkward because i know just about everyone who is stopped at the stoplight is staring at me struggling to free my wheels enough to proceed toward the office building. I struggle for about a minute or so and then put the breaks on my chair so I could think. My innovative nature tells me to figure out a way to free my wheels. I looked around for something to grab onto so I could pull myself over the uneven pavement. There was nothing. I continue to sit there awkwardly trying to figure out what to do. Then i hear a car door open. I turn around and a young man approaches me. " Do you need any help?" I answered sure thanks. My face was probably as red as a tomatoe. I get embarassed having to depend on help so much. I'm just a naturally stubborn person. So anyway, the kind stranger freed me from the pavement trap and pushed me to the smooth part of the road. I was so greatful for that mans kindness. If he didn't stop to help me, I don't know what I would have done. The kind stranger left me at the smooth part of the road and went back into his car and drove off. I started to wheel myself up the road. Even though the pavement was smooth, there was still an obstacle. Not one as bad as the swiss cheese pavement, but still an obstacle nonetheless. The smooth pavement was a hill. Not a very large hill, but a hill large enough to make my life my more difficult. I started up the hill. I was just glad to be freed from the uneven pavement so I didn't really care about the hill too much. I made it a 3rd of the way up and then heard a voice behind me. I turned my head and it was another young man. He too asked if I needed help. I thought why not and replied sure, that would be great thanks. I offered to hold the stranger's coffee. He pushed me the rest of the way up the hill. I thanked him and he went on his way. In 10 minutes time, I encountered two kind strangers. I have never seen these men before in my life and yet they went out of their way to help me.It only took maybe a minute or two out of their day but it made a worlds difference to me. I am really greatful for their kindness. I hope this could inspire those who read this story to take the two minutes out of their day to help make someone's day a little better.

Tuesday, November 29, 2011

Bad Day

Today was not a good day for me. I awoken by my joints killing me. By that alone I knew it was time for me to change my patch. So i got myself out of bed and put on a new patch and went to class. I forced myself to go to class. Once at class I was listening to my professor lecture, yet I could not concentrate. The pain was excruciating. While the professor was talking I was silently begging to make the meds kick in. Some time passed and it just wouldn't stop. I tried to ignore it and continue on with my schoolwork. I was particularly determined to go to my next class because I seem to miss it often. It's not because i don't like the class, I have no problem with it. It's just a coincidence. Anyway, I was trying my best to make it through the class i was in. Then, I started tearing. I couldn't sit there any longer. I told my professor my situation and he allowed me to go back to my room. My friend volunteered to help me back to my room. Finally I made it back. I felt like I was gonna die. The pain was so bad. I managed to take my medicine and fall asleep. As I layed in my bed I couldn't help but feel guilty about missing my class. Of course this was something out of my control, but I couldn't help but obsess over it. When I awoke, I felt a little better, I guess my pain medicine decided to kick in. It was about time.

Saturday, November 26, 2011

Make it stop

I woke up this morning in excrutiating pain. Nothing too out of the ordinary being that I am always in pain but my joints were killing me. Then it came to me that I almost forgot to change my pain medicine. I love my pain medicine because it helps me have some sort of relief from the agony. It lowers my joint pain level from its usual 9 to about a 5. Big difference. The best part is I have to change my pain med every three days. I despise it when the medication wears off because then I feel the pain at the level 9. It's especially awful because it like hits you hard. It feels like someone showed up out of nowhere and decided to break your bones at the joints. Not fun. I can't wait for the day to feel pain free. Especially from my headache. My headache is like a personal gift from Satan. It's a level 10 pain all day everyday. It's sad because I don't even remember what it feels like to not be in pain. I bet it feels amazing. I know nobody is literally pain free but I want to know what it feels like to have the normal aches people have. Not the torture I feel all the time.

Friday, November 25, 2011


I had a very nice Thanksgiving with my family. I spent the day at my Grandy and Poppy's house. We spent a lot of time talking and reflecting on things. I love visiting them because I know they love me so much. I can see them hurt when they see me suffering from the Lyme and despite being in their seventies they are always trying to help me get around. They have a lot of stairs in their house so navigating it is a bit of a minefield for me. It's ironic to me that they have to help me get around when usually it's the other way around. The granddaughter helping the grandparents. Life is funny like that. Today I plan to take my little sister to the mall. She has nothing to do today and has done so much for me, so I think it's the least I can do. It's black Friday and the place is going to be a mad house so after I take her I think we should be even. Navigating a packed mall in a wheelchair is no easy feat. For one, people love to stare. It's not like they haven't seen a wheelchair before. Then theres the people who despite how many times you ask them to move ( politely of course) they insist on staying put. Like moving over an inch would kill them. Then theres the people who are perfectly okay and have no strollers or other accessory that prevents them from using the escleator that pile into the elevator. For those people, the escelator is no more work than the elevator. That brings me to my next point, the mall only has one friggin elevator in the whole place. It's extremely inconvienient, but wouldn't be so bad if all those individuals who think the escalator is so strenuous to use kept taking up the entire thing.

Wednesday, November 23, 2011

Giving Thanks

Today is the day before Thanksgiving. So I decided to write my Thanksgiving entry today since I may not have the time tomorrow. Anyway I am going to dedicate this entry to everything I am thankful for. It may be hard to believe, but despite all the things Lyme has taken from me, it has given me some things too. Mainly it has opened my eyes to all I have to be thankful for. I am Thankful to have such a loving family. My family has been at my side since day one. They would comfort me when I cry, hold me when i sleep, clean up my vomit, spend hours at my side when im in the hospital, help me when I need something, and celebrate small achievements. Throughout my life I have always known my family was there for me, but getting sick showed me the vast extent my family supports me. My illness does not just affect me, it affects the entire family. I can't even count how many sacrifices they have made for me. A recent sacrifice that continues to amaze me is the one made by my little sister. For her 13th birthday she threw a huge birthday party. Instead of asking for presents though, she requested that guests make a donation to the Department of Lyme Disease research at The University of New Haven ( my university). The over 2k she raised will not only benefit me but the 1000s of other plagued by Lyme Disease. I am really thankful for her generosity. She is an amazing sister. My family are not the only people I am thankful for. I am also thankful for my friends. My friends are the best a person could ever ask for. I can always count on my friends. Living hours away from home means I especially need to depend on them. They make me laugh when I feel like crying. They encourage and motivate me. Taking pills that make me gag just by thinking about them needs as much motivation one can get. They help me with things that being in a wheelchair makes difficult. Like crossing parking lots or going up hill. They are there through thick and thin. If I need them I know I don't need to hesitate to ask. They too go to extremes to help me. I am thankful for my amazing doctor. I am thankful for everything I am fortunate enough to have. Food, a house, clothes, the ability to go to college, clean water, and the other things so many people take forgranted. Even though I am in an awful situation, I still have countless things to be thankful for. Happy Thanksgiving! Remember to reflect upon what you have to be thankful for.

Tuesday, November 22, 2011

Homeward Bound

It's Tuesday and damn it is cold out. Got up this morning around 6:30 am which means I was actually up and out of bed around 7. I have two classes today then back home to Jersey for thanksgiving break. My joints are especially achy. I can feel some of the pain through my pain patch. That means one thing, it's gonna rain or snow or hail or whatever other type of weather has to do with changes in the pressure. It's Tuesday and damn it is cold out. Got up this morning around 6:30 am which means I was actually up and out of bed around 7. I have two classes today then back home to Jersey for thanksgiving break. My joints are especially achy. I can feel some of the pain through my pain patch. That means one thing, it's gonna rain or snow or hail or whatever other type of weather has to do with changes in the pressure. On the brightside, I am home for Thanksgiving break. I am seeing my dogs for the first time in weeks which is amazing . It feels good to just be home.

Monday, November 21, 2011

It's Monday

It's 5 am Monday Morning , as usual I did not sleep too well. My immune system has once again let me down. On Saturday I took a trip to the mall, like any teenager does and now I have a fever and sore throat. Nothing spectacularly out of the ordinary in my life. Whenever I venture into the public territory, I always get some sort of souvenir.
Lyme has taken a major toll on my lifestyle. For the past 4 years I have been fighting for my life. I can't walk, suffer from severe pain 24/7, and can't even use the bathroom. I spend a lot of time taking care of my health. I always need to take my medications. By medications I don't mean one or two pills. I mean more like 16. Of course I can't take them all at once. That would make my life way to easy. I need to take some in the am, some in the afternoon, and some at night. Then further splitting them down into groups of with food and without food. It's a pain in the ass seriously. But, I know i don't have any choice if i want my life back. I am a fighter and I will not give up just because something is difficult.
Getting an education means so much to me that despite my illness, I attend college as a full time student. I felt that it wouldn't do me such good just laying around feeling sorry for myself. I wanted to feel productive and like I was achieving something.
I get around campus with a wheelchair, which is not at all fun. That's one thing I really don't get. Using a wheelchair is far from fun. But, I will save this rant for another entry. I'm managing to do pretty well at school though. The college I attend is very accomodating to my medical needs. It makes my life a lot easier knowing I won't get penelized for missing a class for a visit to the doctor, a hospital stay, or just because I'm feeling under the weather. The semester is almost over. The time just flew by. I leave for home tomorrow. It's for Thanksgiving break. I am so ready for break and am so glad I only have a two day week.