Have your cake and eat it too

Sugar Cane, otherwise known as a great description of my past 12 months of being engaged

Sugar Cane is the real thing. Nothing compared to an artificial sweeter that has a possibility of causing neurological diseases. No, Pure sugar can you lift you up when you’re feeling down, and has the ability to make almost anything taste sweeter. Bottom line it’s real.

It’s been quite the year. We have written a few chapters, and sure there have been times when I wish I lived alone and didn’t have to answer to someone asking anout my latest Francesca’s purchase, or ask me why it was necessary that we have flower’s at our wedding,  But at the end of the day I couldn’t seem to put the book down.

I knew that when I met my “match” three years ago he would need to be someone who was the complete opposite of me. Someone who could calm me down, lift me up (not physically) someone who could learn to love a crazy Irish girl. But, I also wanted someone who would allow me to still be all of those things.

In time I have learned that a quiet voice is better to communicate with, following a budget leads to less fights, and cleaning up the bathroom is like winning the super bowl.

Thank you for being the sugar to my salty life. For me, this spoonful of sugar really did help the medicine go down.

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”