Leg Day

After injecting myself with medicine for the past 4 months, I have found that now I’m beginning to bruise up real nicely, much like the banana that is sitting on top of my desk at work.

Besides the pain that the injections give me I really don’t have much to complain about because for the most part I am pretty stable. I can balance on one leg without falling done, dance, run, walk you name it.

But today my legs started to get extremely tight and I got worried, worried that things were headed in a different direction. Much like anyone with any disease, the moment you start to feel the slightest bit different you become convinced that something is happening to you, that things are headed in the wrong direction.

This past weekend I went out with my mom. I pulled the wheelchair out of the trunk, got her in and out of her wheelchair, opened and held doors up that were not automatic and maneuvered our way around tightly packed stores. All so she could go out and enjoy the beautiful spring like day and we could spend time with one another. We got in and out of the car a total of 6 times. This might not seem like a big deal to many, but I will tell you that it’s sometimes annoying. Whether you’re pushing a baby carriage or a wheelchair and packing/unpacking/maneuvering it’s still annoying. However, despite my annoyance and lack of space to hold my items, I thought to myself how glad I was that I was able to walk around and push my mom in the wheelchair, because who knows when this will end.

 This isn’t depressing, I swear. The point is that while I was out on Sunday, everyone looked at me instead of her while having a conversation. They saw her as disabled and me as not, when really both of us are. One is dealing with Relapsing-remitting MS (RRMS) and the other Progressive-relapsing MS (PRMS). There are 4 types of MS. I have the best case scenario and she has the worst.  Secondary-progressive MS (SPMS) is the step above the MS that I have and most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will progress more steadily without relapses. What should this mean to you the reader? Well it means that sometimes that thought’s I have in my head about shit hitting the fan, may actually come true. But don’t fret I’ll always have Punky Power.

 Much like this crappy winter, we all know that spring will eventually come; there is always a silver lining despite what you may sometimes think. So here is mine. Last Wednesday, March 4^th, I posted that I would be participating WalkMS.  In the past 6 days since my post, I have receiving the greatest gift I could have imagined from readers like you. People who I honestly had no idea read my blog, and I thought may have unfriended me on FB because sometimes let’s face reality, sometimes I’m wicked annoying. I realized that a lot of people had stories to share with me, stories about their family being affected by this disease and I became empower to raise more and write more. 

I learned that most people don’t know how to react when you tell them you have a disease, and this diagnosis for me became that to so many people. I would be lying to say that I have not been disappointed by some people in my life after facing diagnosis. I have been let down and hurt that they did not reach out to me and see how I was, even if my answer would be “fine”. But that bridge has been crossed and for some is broken now.  And then came spring! In turn I have seen that those who have reached out to me have filled my heart with such happiness and overwhelming love for their desire to help me and other’s by donating.

In only 6 days I am nearly 50% to my goal but 100% appreciative and thankful to everyone who has donated to my team “The Fightin Irish”   When I have seen your name come through with your donation, I have cried every single time. I have been overwhelmed for your desire to help me and my mom and everyone else who doesn’t know what the next few days/weeks/months or years will bring. 

Not everyone has a blog, or is a chatter box like me. Most people keep their feeling to themselves, but lucky for me and even luckier for you I have soap box and I stand on it, standing with both legs stable and ready to fight.

Donate Here and make me cry

XOXO

B

Champagne for my Campaign

 “Your MRI reports show no enhancing lesions. Cervical cord same with some improvement but essentially stable. In the brain old lesions are improving but some new lesions (not enhancing). Taken together this looks stable, it is too soon to know if Copaxone is working or failing. Usually working if no enhancement.”

 I was going to try and summarize how happy I was with a song, but unfortunately I am chained to my desk and I can’t video myself singing and dancing.

So I’ll settle for this blog post instead. 

This might not seem like a big deal but it’s a pretty big deal to me. I hate shots and needles and blood, and since getting diagnosed I’ve had to give myself daily injections of Copaxone every day. Sometimes the site of my injection swells up or it becomes itchy, and at times it’s extremely painful. I found that using a heating pad before I administer the shot helps, and then I use an ice pack when I’m done. I also found that not eating gluten or sugars helps me feel better. Go figure. Gluten is a monster. This sound crazy to me at the time, but I did say I would do anything to get better so I did, even if it meant cutting out my beloved friend Mac & Cheese and alcohol from my diet. 

Now here I am with good news.

Good news on a good week. 

This week I decided to walk MS. I thought that doing something to raise awareness and funds to a disease would help people. Thanks to people before me who walked, funds were raised and now the advances are amazing, people like me are getting positive feedback.

Bringing me to the point. Your donations make a difference.

Something else that makes a difference is laughing and having fun and celebrating life’s small victories. Friday, I salute you. And MS I give you the middle finger because I think I told you before I am not MS’n around.

Letter from the Editor:  Thanks to TK.  I know you want a blog post about you, but in the meantime settle for this. I know you’re already settling for so much like chicken, salad and vegetables when all you really want is a sub. My nightly injections would be nothing without my night nurse.

Xoxo

B

 Donations are taken here

http://main.nationalmssociety.org/site/TR?px=13933725&pg=personal&fr_id=25444

The Lemon

The lemon

 Growing up in a house where I was told every morning to get 100’s and all A’s, my expectations from the start were extremely high.  Call it nature vs. nurture or call it insanity but such is my life.

After being diagnosed with MS, it was decided that I needed to cool it and slow down.  I needed to stop having control over everything and let other people help. I also needed to not be “involved” in everything. Try telling a bride or any woman that she isn’t involved, see where you get. Want the answer... you get nothing. No seriously, I probably wouldn’t have any groceries and Im marrying a grocer. 

Let’s  first talk about the fact that I didn’t make a wedding website and I didn’t take engagement pictures yet.  #badbride I figured I could take the engagement pictures whenever  I felt like it, like when I hadn’t gained 50 lbs from steroids,  and I didn’t need a website because I had a pretty big mouth and talked to most people on a daily basis.

As it turns out the person I’m marrying wanted to have complete control over the hotel code portion of the wedding, and just like that with a whish of his magic wand gave the code to every human being he knew, and then I was stuck with no rooms.  Needing to sign a new contract because my invitations won’t be mailed until the summer and none of “my people” have booked because I didn’t make a wedding website providing information. Call me a slacker, call me whatever. I had like a million things on my mind. Disclaimer* I got more room’s because I became involved, so don’t worry.

After having a million and one things to do, I decided to add one more thing to my list and WalkMS, walk because today I can walk. I can walk all over the place without a walker or a cane so I may as well. Who knows where this crap MS is going to take me in the future so I might as well do what I can while I can do it. I decided to make a team and call them the “Fightin Irish”.  In my humble opinion and in the spirit of St. Patrick, the Irish are the great people in the world, and like them I am going to fight like holy hell for me and for Marshie and anyone else like us.

I wanted to make a team that would represent not only me but also my family, something that could get people together for a Sunday in April to walk and spend time together. Get to know one another, and help raise some money for a disease that is disabling, scary and downright dirty. 

My expectations starting this time were pretty low, sure I had asked people time before to walk with me but I didn’t really know what to expect.  I had no idea that my expectations would be surpassed.  I didn’t know that in minutes and only a few hours I would reach my low goal of $250 dollars. I had no idea how happy I would be when the MS society sent me an email that said “Time to do a Happy Dance, because I got donated”. I had no idea that all the people who read emotional blog would help out in ways that I only imagined and people would offer to walk with me. So I raised my goal to $1700.00. Lucky 17. 

 This disease has been pretty sour. I’ve seen it put people I love into wheelchairs, tear families apart, numb hands and feet and destroy anything it can. It’s been a lemon to say the least, and for me currently it feels pretty sour, sour in the sense that my vision feels like its failing me and driving in the dark as become challenging. My memory doesn’t seem on point at times, but yet I can remember what I wore 3 months ago on a Friday. Sometimes my hand feel weak and holding a pen in my right hand is difficult, but such is life. 

 Just like anything that’s sour, it eventually does have its rewards and benefits. But to get down to the benefit of anything you have to first cut it open  squeeze tight and take it for all that it’s worth.

Letter from the Editor:   

  My hope is to find a cure for this disease. Though it may seem out of reach at times, my expectation is to get other’s to familiarize themselves with it and provide support to families living with it. To have a world free of MS, to have this disease be  a thing of the past,  so the word’s you have MS will be never heard again “No Nay Never, No More”

Everything is wonderful now

Everything is wonderful now…

A long time ago in a far way land I was just a small town girl, living in a lonely world. I became a girl all alone until I found 6 people to take me.

 This is a THANK YOU for helping me survive because “everybody makes mistakes, everybody has those days” For you I will always be grateful.

Whether I was stuck in an elevator crying my eyes out because Mr. Big ditched me on a Saturday night, or I couldn’t find my way to late night, you were the ones that got me back into the suites, you were always the one’s that brought me back to life. You were the ones who turned up the music and danced on a 4X4 table with me.  You turned it up loud, and you danced like no one was watching*

I knew forever that you would always be there, because that’s what sisters do.  Even though we all weren’t bound together by blood, I knew that from the moment I met you that we wouldn’t leave each other’s side. In a world where I was born with no sisters, for some reason I was lucky enough to inherit enough to make all day’s worth living for.

Thank you for making me laugh, for telling me “it’s beautiful out”, and most importantly for making me smile when real life got real.

 I love you.  

I think it’s insane that I was born with no sisters, but in 2004 I figured out why. Okay, it was more like 2005, when I actually could count you all on my hands. I sat on the quad with you, I learned about you, I met your families and they became my own, I had faith that you would be there for me and you turned around and gave me that faith two fold.

You became the family that I always wanted to have.

You go to college to learn, but you never really know what you’ll learn about. Sure you’ll change your major, you’ll interpret new things, you’ll learn about love and maybe loss, a major, a minor, but in the end when we toss our cap and wear our gown what we’ll remember is who we learned it all from. We’ll remember the days in the library laughing, the evenings in the cafeterias and the morning’s rushing to class while we stood at Dunkin’s. We won’t leave the campus with anything left than a magnificent memory of those who filled our hearts, and if we’re lucky those heart fillers are just bridesmaids waiting to try on a gown.

Thank you to the family I never knew I didn’t have, the bridesmaids who have had to listen to my “vocal” blogs for the past 11 years. You have been the definition of bridesmaid.

When I stood there in a bridal store today, watching all these bridesmaids try on gowns with their wedding party I did not become envious of them; in fact I was sorry for them that they were not lucky enough to have my crew. The crew that would do anything for love. Who at a moment notice who wear the scarlet letter, who, since I could breathe for the first, became part of my life, who never without out a doubt let me dance with somebody they didn’t think was good enough.

 

Letter from the Editor: I could never describe my love for the Riv crew.

 In one word you are everything I always needed us to be “FAMILY” and for that I will always be grateful.

"A bottle of red, a bottle of white" Billy Joel

“A bottle of red, a bottle of white
It all depends on your appetite
I'll meet you any time you want
In our Italian Restaurant.”- Billy Joel

And those lyrics from one of my favorite songs led me to this post...

It took a lot to get me here, to get me to a place where I could talk about the fact that my dad would not be at my wedding. In about six months I’ll be getting married and instead of walking down the aisle with my dad I’ll be walking down with one of my best friend’s instead.

In January of 2014, I became a 21 year old girl who lost her dad. I lost the lyrics to all our favorite songs, when I lost you.  Before being a stay at home dad became cool, I was the one with the stay at home dad. My dad stopped working, as a grocer nonetheless (just like my future husband) to stay at home with me, all so I wouldn’t have to go to day care. Sure my parents sacrificed a lot. I grew up without cable TV, without playing two sports at the same time, but more importantly I grew up with a dad. I grew up with someone who picked me up from school when I missed the bus, who let me give them facials on a random Tuesday, someone who watched “The Price is Right” with me every day, took me to Winchester playground and bought me Bubble Tape with my best friend and made me tuna fish sandwiches also known as the original “chipwiches” on Fridays

I would be lying if I said I didn’t think about him 99.9% of the time. I mean I spent the majority of my life with him. We would go on these car trips as a family every year, spontaneously leaving at 5 a.m. to miss the traffic traveling to NY, Virginia or N.H.. I would sit in the front with him, mom and brother in the back and we would sing. We would sing every song on the Frank Sinatra, Nat King Cole , Patsy Cline tape/cd.  We would yell out the words loudly while clapping our hands and we would have the best time. Much like the man I'm marrying these car rides were treasured adventures , and I was the infamous shotgun rider.  Sure we would fight when we weren’t in the car. We disagreed about a lot of things, and had our words, but mostly I think it was because we were almost exactly the same.  We had this LOVE for one another that I think only a daughter and father can have, something that is so unconditional, something that I hope my husband to be and  future children can be ever so fortunate to have. 

When my dad left, I said goodbye first. I knew there were a dozen other people in the room, but for me it felt like we were all alone in his car singing our songs. I said goodbye, kissed him on his forehead and I left. I walked out and shortly after my cousin followed and hugged and me. In that moment a lot went through my mind, but at the same time it was so little. I called two people and told them to tell everyone else, and they did. They took care of it all. They showed up the next day, lent me their Burberry bags for comfort, took me funeral dress shopping, drank countless amounts of red and white wine with me, danced with me, and most importantly sang with me.

Like any girl, I thought about my wedding day and how my dad would walk me down the aisle, and suddenly my dreams came to halt. The thought of dancing to “Unforgettable” suddenly became a thought that only appeared in my day dreams. In my dreams they came, and in them they remain.

Sometime after my dad left someone reminded me I would have to “walk down the aisle without my dad”, something I will never forget, though they may. The same two people I called the day I lost him, became the same two people I would “honor”  in the next step of my life. Through good and bad they have made all the difference, just by being my sounding board in what at the time was a quite car ride.

As the days draw near, I know there will be a piece of me that is missing.  Sometimes talking about it helps, and sometimes talking about it hurts. In  the end, I hope it helps me, and maybe someone somewhere it will helped to, because memories are a good thing, and at the end of the end of the day, sometimes it's all we have left to hold onto. On August 29th, I know that I won’t have “George Bank’s” to walk me down the aisle. Instead I will have the little boy in the back seat who sang along quietly, the most handsome little brother I could ask for, and someone who I know will make sure his dad will have an “Unforgettable” part in the day, because for me he has had an "Unforgettable" part in my life.

 

Letter from the Editor: 

To my little brother who sat in the back. Thank you for learning the word’s to all my favorite songs, for learning how to Irish Step Dance (even just a little) and for learning how to clap to the music. It has been difficult to know I would not have  dad and his “zipper” walking me down the aisle, but knowing that I have you has made me ever so grateful. Even if 22 years ago I didn’t know how grateful I could be.

XOXO B

 

No MS'n around

It's snowing today and with the anticipation of it being pretty crappy MGH decided to cancel my MRI and instead schedule it for tomorrow. Now instead of napping inside of an extremely loud machine that sounds like there is a CD that's skipping continuously for 2 hours I can take naps on my own couch in my "quiet" apartment because I have a snow day.


Back in August I got my first MRI, I didn't really think much about it because I wasn't prepared for it. If you have never had an MRI before let me lay it out for you.  You lay on this tiny table and go inside a machine. It sounds like there is excessive banging while you're in there. Something like a CD that skips mixed with a small child banging every pot and pan in their house. How do you manage to lay inside of a small machine for an excessive amount of time? Shut you eyes and pray. At least that's what I did.


 Back in the summer I went to meet our priest so he would marry us in the Catholic Church.  Ted told me I needed to be honest with him, so I told him how my dad had died, my mom had MS. He told me that I probably lost my faith and he was right, I did. Maybe you don't believe in god, I don't really care what you believe in. That doesn't matter. I still don't really know still my emotions but I believe there is a plan for everyone.


One of the first things that crossed my mind when I got diagnosed was HOW COULD THIS HAPPEN TO ME?


Well, bad things happen to people all the time.  So here is my idea on how I got MS.


 *Disclaimer*
Call my crazy, call me whatever you want but this is my explanation. Also, it's good to know I have a sixth sense.


I had this dream after my dad died. It happened weeks later when I went back to school. My dad came to me in this dream and told me he was sorry it took so long to visit me. He said he had a lot of people to see. This was 7 years ago and I remember it because we all need something to hold on to, something to help us get through things.  After being diagnosed, I was convinced he had something to do with this. I believe that wherever he is, he was given a choice. He had to give someone something who can handle it, and give them something that will help other people as well.  I am convinced that he gave me this disease, but with good reason.


A few days before the MS diagnosis I began looking for a new job. After spending the majority of my adult life working retail, I was worn out. I really needed a change and needed to get out from a "toxic" environment. I wasn't happy where I was. I was watching my back all day, everyday.  So I applied for jobs. Five days later I lay in MGH and get a phone call asking me to come in for an interview. I'm sure my close friends and family thought I was nuts, planning my escape route from my job the same time as learning I had this diseases. But I needed I out.


I told anyone that would listen and understand that my dad was given a choice. He had to give me MS, but he would help me get out. There was no way he was going to give me this crappy disease and leave me in this exhausting job. Nearly three months later I got out. I got a new job, left quicker than I would have planned, but in the end I got the short end of the stick, so screw it.


For the most part I forget about that I have MS. When I cut gluten and sugars from my food I feel better. My hands become less painful and I don't see the flare ups as much as I usually do. A lot of people will tell you that changing what you eat, won't change things. But for me it did. I decided that I would do whatever it took to ward off symptoms. Back in October I was at my moms house and my little 8 year old friend asked me to skip with her, I tired, but I couldn't. Here I was a 28 year old who couldn't skip. Would I be able to Irish dance at my own wedding, who knew because back then I certainly couldn't do a jig.  I decided to practice because there was no way in hell that wasn't going to happen.  I would run because I could, I would dance because I didn't know how long I would be able to do, and I would skip with an 8 year old as long as she would ask me to. For me, much like my dad I was given a choice and I knew for me there would be no MS'n around.


Letter from the Editor:
I've heard from people I haven't in years. I've also heard from people that I didn't have strong  relationships with but who have had a relationship with MS. Thank you for reaching out to me and sharing your story and your feelings. Thank you for reminding me why I need to keep at this blog. When you all read this you're escaping from your life, but when I write about it I am letting you into mine.


  Who else has MS: Jack Osbourne. He has a cool blog, so you could check that out http://www.youdontknowjackaboutms.com/. He also danced on Dancing with the Stars so that's pretty cool too.

"Don't be embaressed"- Dad

I'm pretty devastated that the show Parenthood is over. I love how they show what life is actually like, highs and lows. I also love how the producers fulfilled all my dreams with the season finale. There is one moment though in the season finale that pulled at my heart strings the most. With tears in his eyes,  Zeek asks his daughter if he's been a good dad and her response " the very best"


Now this post isn't going to get into how I lost my dad 7 years ago, I'll save that for another time. A time when I feel like crying all day because I miss him. This post is about a moment with him that changed my perspective on MS, and though I didn't always want to hear what he had to say,he was to me the very best.

Now lets take a walk down memory lane......In 2008 my high school was having a mother daughter banquet. Daughters and their moms went to dinner and a fashion show at the high school that was put on by the student body. Girls and their moms walked in together and got handed flowers by an escort. At this time in my life my mom had a cane and was walking pretty well. Being young and naïve, I was nervous about how other people would see us and look at us. I was just 18 and felt like people were going to have this idea of who we were all because she was walking with a cane. Through some not so nice verbal words, I somehow told my parent's that I wasn't sure if I wanted to go. My dad flipped and then and told me "don't be embarrassed ". He told me instead to be proud of her and help her. I remember these words like it was yesterday because that's when I first started to see things differently and try to be a better person.


Since 2008 my mom has gone through a lot. She retired from a job she loved after worked there for over 20 years.  She most recently got a Baclofen pump  put into her body to release Baclofen to help with her spasticity in her leg. She now uses a walker to move around the house and a wheelchair when we go out. She is neighborhood watch for her neighborhood, riding up and down the street in her electric wheelchair and letting the kids hop on for a ride. Most importantly though, she is happy. Despite the curve balls, she is the mom I remember.


After losing my dad our lives turned upside down. The people my mom cared for suddenly become the people who were caring for her.  We became the caretakers, and it was not easy. Suddenly the little boy she carried would carry her and her little girl who's hair she brushed would brush hers. None of wanted to become a nurse, but we all did. When my brother was little my mom would read " I love you forever" to him, I don't think any of us anticipated it would become our lives.


As a kid, you always want to be someone you're not. Whether it be a superhero or Disney princess there is always something you want to be. When I was little I heard all about the Kennedy's. All about how their life was beautiful but was also so tragic. Yet, I still wanted to become them. I found beauty through their tragedy, I saw Jackie stand up tall in photos when she bid farewell to her husband, I watched Caroline stand alone when she was left alone without her brother.


Telling my brother that I had MS, was the hardest person to tell. A month after he was born my mom broke her wrist and I helped take care of him. I say this because I believe that since then he was bound to my heart like an old velveteen rabbit. Now here I was afraid that he was going to now have to take care of me but in reality he always had. He stood up for me when I was getting yelled at and always had my back. But suddenly, when I told him about me and my MS he told me, "we're just like the Kennedy's"  And I laughed.


Oh dad would be so proud to see that we've become a new version of the Kennedy family. A family that despite tragedy still put on a happy face. MS is all about putting on a happy face. Sometimes the pain is in my legs and I feel like I have a golf club stuck inside. ALL the time I have pins and needles in my left hand, and there are other times when this disease makes me feel like I'm hung-over and drunk all at the same time. I hate giving myself injections of Copaxone every night, but I do it because when push comes to shove, I am going to push the crap out of his girl MS.


When I got diagnosed my mom told me I couldn't do everything anymore. She told close friends and they offered to help, but didn't just say "let me know if you need anything" instead they offered to grocery shop, or bring her to a Dr. appt. These offerings have been the most gracious. I thought asking for help would be embarrassing but it wasn't. Suddenly I became proud.


 I'm proud to walk with someone in a  wheelchair, someone who has a cane, hold the door open and then give a smile. I'm proud to come from a family that smiles through tragedy. Where there is a will, there is a way.




 Letter from the editor: Thank you to the friends that turned into family. Without you and your help I don't think we ever would have realized what life was all about.


XOXO
B