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