Sweeeeet Emotion

The way to put into perspective my feelings about today through in the form of a stranger.
Upon standing in line, someone saw my shirt "The Fightin Irish" and asked me who's Irish I was fighting and I said my own. The person behind me was stunned and I... PROUD, after a short discussion we parted way's and he told me "GOOD LUCK!"


 When I was told that I had MS, I had a few thought's in mind and here are just a few...
1.Fight
2. Don't get down on yourself
3. Educate other's
4. Change people's perspective on MS
5. Make this disease invisible


To my family, friends who have turned into family, friends of friends, and of course those who I knew years ago and have not been in touch with for a long time but felt compassion to donate to my walk and my fight THANK YOU. I personally cannot begin to tell everyone who has donated how much it meant for me to have you contribute to something that will help me and many others in so many ways.


Thank you for helping me become a TOP 25 top fundraising team, for sharing my story, all the kind, inspiring words that have given me sunshine on a sometimes cloudy day. I am forever grateful for it all.

Humpty Dumpty sat on a wall, Humpty Dumpty had a great fall....

 Fare: noun; what you have to pay to ride public transportation

Fair: adjective; agreeing with what is thought to be right or acceptable, treating people in a way that does not favor some over others, not too harsh or critical

Ted always says,” life isn’t fair, fare is what you pay to ride the bus”

What gives you might ask yourself.

 With my mom’s MS, her stability is not great. On Tuesday (St. Patricks’  Day) she fell down, got transported to the hospital, found out she broke her femer, and essential had hip surgery. Luck of the Irish huh? She’s Italian though so I think that may have had something to do with it. 

Marshie is now residing in a hospital bed and will be going to rehab over the weekend. What rehab? Well I’m not sure yet because insurance has to figure this one out. Hopefully she’ll be at one close by, and good at getting her back home as quickly as possible.

Last March she was also in and out of the hospital/rehab, where she stayed for over 2 months. To say that I am angry and disappointed is an understatement. I keep thinking to myself how this completely sucks. How much setbacks can one family have, let alone one person? For the past year she worked so hard at getting her life to a point that she was happy with. Cooking, baking, cleaning, and playing with Bailey. She had just been practicing walking without her leg brace for my wedding in August. Now we are back to the beginning. It’s like playing “Chutes and Ladder’s” but never actually winning. It sucks to not win, and I am a poor loser.

When I got this new job, I got to start over. No one knew my dad passed away, my mom had MS for over 10 years; can’t work or drive, or the fact that I have MS. I felt like a new person coming in here. I became someone without a “past”, someone who got to start all over again. 

Then Tuesday hit, I left work early and spent my favorite holiday in an ER. 

Upon returning to work people asked me how everything was. I told them the situation and that my mom had MS. Most said that it was a “tough” disease and they knew other’s that had it. They didn’t know much about it, and still don’t. It has taken everything out of me to not break down crying, or run out screaming that I also have MS, something inside stops me every time. I don’t want people to ask me how I am every day, tell me not to get stressed out or feel bad for me in general. I want to continue to be as normal as humanly possible. 

Sometimes, I want to not be me, but I am and I have to remember that this disease isn’t me.  It is just a part of who I am.

My mom’s birthday is on Monday. So will begin another year of her in life, in a position that she doesn’t want to be in, at a place that isn’t her home. But much like this disease that many say is “tough”, she continues to inspire me and be the toughest of them all. 

Setbacks only make you push back. 

Let the pushing begin.

Remember how I am doing the MS walk? Well, I haven’t reached my goal yet, and I would really like to. I’m really sick of the obstacles that disease brings and would like to put an end to it. To donate click HERE

THANK YOU !

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”

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