Good Riddance 2013…..

It was the best of times, it was the worst of times….Oh who am I kidding. 2013 will go down as the worst year of my life to date. But even amongst all of the terrible things that happened there has also been a lot of amazing things. I’m sorry that I had disappeared for a while. It appears I have been VERY busy living life the last few months. And while most of the things I’ve been experiencing have been amazing, there have been some not so great times too! But let’s recap: the past few months and the past year!

I took a trip to New York City at the end of October with Devin. And it was amazing. I loved the city so much, and can’t wait for my next chance to go back! We were like the ultimate tourists while there, saw the empire state building, the 9/11 memorial, took a cruise by the statue of liberty, saw a show, Big Fish, which was amazing, went to Macy’s, took the NBC Studio tour, went to Tiffany’s, Radio City Music hall, and even a trip to Central Park, where I got to see the John Lennon Memorial and The Dakota, though there were no Yoko sightings. We took the train there, which wasn’t so bad on the way there but was pretty killer on the way back, it took forever!!

November brought a trip to Cleveland for a P!NK concert, with my mom, Cathy, Mandy and Vickie. Let me tell you, if you are a fan of P!NK you must see her in concert and if even if you’re not a fan you could definitely appreciate her showmanship. She is amazing! The acrobatics she partakes in are crazy!! In November I also got to go to the finals for the Noteworthy competition, and the MS Society won!! Even better, they won with a guy I chose 🙂 November also brought Thanksgiving and time with friends and family. Justin and I were able to squeeze in two dinners and fatten ourselves up thoroughly!

Now December has been a little rough for us. Justin was hospitalized this month. (I know he’s trying to steal my thunder!)He had an infection that caused his lymph nodes to swell. Originally we thought he had a hernia, and so did 3 doctors, but a trip to the ER and a CAT Scan proved otherwise! Thankfully he is back on his feet and doing well! Just when we thought we’d beaten the insurance for the year, another deductible has to be met! Being an adult has never been so overrated!

We were able to celebrate Christmas with both Justin’s family as well as mine. Though, due to circumstances we weren’t able to give like I would love to, we got to spend time with our loved ones which is really all that’s important during this season!

Merry Tapper Christmas 🙂

Now we’ve come to New Year’s Eve, and I don’t think I’ve ever been happier to see a year go. I’m looking forward to 2014 bringing the Tapper’s some good karma! Justin will leave for Florida on Saturday, the 4th, to drive a moving truck to Florida as his mom and Jan are moving there. Justin and I will surely be sad to see them go!! And in other exciting news, I’m starting school on January 13. I will be returning to school to receive my Masters in Public Administration. I’m excited but also nervous! It’s been almost 10 years since I’ve gone to school!!

I really can’t believe it has been a year since my journey with MS started. It’s been over a year since I had optic neuritis and January 2 will mark the one year anniversary of my diagnosis. While being diagnosed with MS is the hardest thing I’ve had happen to me, it has also given me a lot of unexpected positives. Let’s talk about that!

I have learned how strong I am. Not physically, you still won’t see me lifting heavy objects. Sure there have been days where I would have liked to stay in bed or spend my day feeling sorry for myself. But I have continued to choose not to do that. I have continued to fight and be the MS Warrior that I know I am. I plan to continue to do so.

I have learned how strong my marriage and my husband are. I am sure there are men in this world who would have run if their wife got diagnosed with a chronic illness 16 months after getting married. Not Justin, he has stood by me and supported me through everything. Even if he won’t let me use the “I’m sick” excused when I don’t want to do something.

I learned I have an amazing amount of support and friends. I have seen this in so many ways. The amount of flowers, candy, cards I received in the hospital was overwhelming. The amount of people who have read this blog, and who have given me positive feedback is amazing. The size of Team Tapper for the MS Walk was amazing. The people who donated for the MS Walk are amazing. And last, but certainly not least, the people who showed up to the benefit and spent their hard-earned money to help in my time of need are AMAZING. On that note, I must say a very special and heart-felt thank you to Joe Cieslak and Jessica Chaffee. Without you two, the benefit would not have happened and I am eternally grateful to you. Also so the bands who played the benefit, and anyone who donated to that amazing Chinese auction.

I was able to form a relationship with the local chapter of the MS Society this year, because of the lovely, and amazing Colleen. Which in turn has sparked an interest in non-profit organizations for me. Who knows where that will lead in the future!

I trained for and ran a 5k. Let me repeat that…..I trained and ran a 5k. That is something I would have NEVER pictured myself doing, and something that I don’t think anyone who knew me pictured me doing.

I have changed to the point that I no longer let myself believe I can’t do things. If I want to do something, I put my mind to it and I do it. That is what I did with the 5k, what I have done with going back to school and what I will continue to do. I will live my life to the fullest. It shouldn’t have taken a chronic illness to make me realize that, but I’m glad I realize that now. So if you take one thing away from this blog, let it be that. You can do whatever you want. Set yourself a goal and obtain it. The only thing in your way, is you.

I CANNOT wait to see what 2014 has in store for me. I will continue to push myself to be the best version of me. And I will continue to make MS my bitch. Happy Holidays and lots of love to you my friends 🙂

Hair’s to Wednesday!

Today is a good day 🙂 I woke up feeling quite energized. Maybe I’ve been cooped up in this room for too long. Either way, I decided today is the day I would do something about my stinky butt! LOL.

The hospital staff was nice enough to actually let me sleep all the way until 7 am today! (Note to self: 4:30 am wake up call for blood tomorrow!) At 7 I was awoken by a doctor coming in and turning on the brightest light in the place. Guess I then knew it was time to get up and start my day!

After a thorough poking and proding by my doctor I was left to my own devices. So I got to work on the Kelly improvement project. Since bathing is not a true option I set to work with 2 wash clothes, one with soap to lather myself up and one with just hot water to wipe myself down. It may have been a backwards way of doing things but I got myself clean, save my neck where I have my catheter and some spots on my back which were downright impossible to reach. Brushed my teeth, threw on a little deodorant and some Victoria’s Secret body spray and I was good as new.

I ordered and breakfast and was settled back in bed by 8:30. I was ready for a nap after all of that though! And then I received a delivery of Ye Ole Sweet Shoppe cookies to my room. Man, this day just keeps getting better! Thank you to my very sweet friends from work, Lisa, Lisa, Devin, Kristy and Beth!! I appreciate it so much! And so does my belly! Speaking of my appreciate belly, thanks to Laura who is bringing me Dairy Queen tonight and to Aunt Karen who is bringing me Pufferbelly for dinner. I sure am loved! And I might be really fat by the time I get out of here!

Just when I think my day can’t get any better, I find out now that I’m in the hip/knee replacement wing there is a hairdresser that comes in once a week to wash and style the patients hair. And since I am in this area, I got to partake. So after 6 long days, my hair is finally squeaky clean! I feel like a completely different woman! I must say I might have been happier to see the hairdresser than I have been to see anyone!

I’ve seen 2 doctors today who seem to be happy with how I’m doing. I was also seen by physical therapy today, who seemed to be pretty happy and not think that I needed to much work. I did get to wear a pretty sweet belt while they were here so that someone could hold on to me while walking around. This was to prevent falling and accidents. I’m thinking I could use one of those belts and a follower at all times in real life.

Only 3 more days left after today and I’ll be heading home!! I can really hardly wait! Though I’m pretty sure real life is going to exhaust me for awhile! But I truly am looking forward to getting back on my feet, getting some fresh air (even if it is freezing) and seeing my puppies!!

Fresh, clean hair!!

Cookie Bouquet! (yes there are some missing, I’m a fat kid! don’t judge me!)

The view from my room!

Everything happens for a lesion….

Well, I picked up the images from my 3 MRI’s today. Justin and I had only seen the photos of my brain while at the neurologist, which were pretty darn cool! And evidence that I do in fact have a brain! So, I was interested in seeing the images from my two spinal MRI’s and interested in sharing some of those photos with you guys!

So after a visit to my family doctor this morning, for a healthy injection of B12 (which I got a Sesame Street band-aid for), I made my way to the hospital to pick up the images. After parking and slowly walking in (I think you need some better parking arrangements Hamot!) I finally gained control of the CD.

Success!!

While I was happy to have this wonderful little CD, I was not happy to see they hospital listed me as age 30. As of today, I have exactly 5 months until my 30th birthday! I may have lesions on the brain, but I know my age!

Now, I know I’ve been discussing my symptoms and some treatments for my MS on this blog. But let me get a bit technical on your here and give you a little explanation on what MS is actually doing to my body. There a lot of people out there who don’t actually know. So here it goes. Please take a minute to grab a caffeinated beverage for what may be a little bit of a bore for a minute.

This is a little story about MS I found online, I think that it does a pretty good job explaining what’s going on:

MS does its damage by causing the nerves in localized areas in the brain and spinal cord to lose their protective sheaths, called myelin. At first, when the myelin is being attacked, the body brings a higher blood supply to the attacked area or areas to fight the attack, and they becomes swollen and inflamed. These areas now become “lesions.” (A “lesion” is simply an area of abnormality.) If the areas being attacked are large enough they can be seen on an MRI. At this point, when they are inflamed and blood-engorged, they are called “active lesions” because the inflammation is actively attacking the nerve cells. At first the nerves themselves haven’t changed much and they appear (and have the same density) as the healthy areas around them. The body attempts to repair the damage that is being done and sometimes these areas try to re-myelinate, with varying success. They may disappear from the next MRI. They aren’t perfect in their function, but the areas may return to a normal appearance.

If the nerves do not re-myelinate and the damage continues, for a long time the lesions sit as scars. These scarred areas contain damaged and dying cells, their blood supply shrinks, and they become dense–more dense than the normal brain around them. These are the classic MS “plaques” and are considered old lesions. They show up as the bright areas, also called “hyperintense,” most of us have seen in pictures and on our films. If the attack on the myelin sheath is too strong for the immune system to repair, more and more myelin disappears and the area of nerves eventually dies. Then it completely scars and contracts. The blood flow is decreased to that area and the body tries to reabsorb it. The area then becomes “less dense” than the surrounding normal nerve tissue. After a longer time the scar can reabsorb completely and the area becomes “empty.” It’s called a black hole.

Ok, now that we made it through that craziness. Let’s take a look at exhibit A, My brain!

Kelly’s Beautiful Brain!

Now, as you can see in the bottom left side of the photo is a bright white spot. That is a lesion on my brain. Now, we don’t know how old it is, unfortunately it’s not like counting the rings on a tree, but we can see it isn’t an active lesion. So there’s a win for me 🙂 Really smart friend, Allison told me the neurologist had told her I had a large lesion on my brain. I told Allison, “Go big or go home, right?”

Now that we’ve taken a little looksie at what’s going on upstairs, let me give you a little update about what’s going on currently with me.

My legs unfortunately have not shown any improvement with the steroids I was prescribed and the medicine that was supposed to help with the grainy feeling in my legs. Sad Face. So, I will be once again meeting with the neurologist on Thursday to discuss further treatment options.

I’m a bit discouraged by this, as it’s getting harder and harder for me with walking each day. It now takes the help of my hands on the stairs in front of me to go up the stairs. And walking, well, it’s just not pretty. I am lucky that I have not suffered any falls, being as I’m quite accident prone as it is. But on the bright side, I have a job where I sit all day, which prevents accidents and allows me to rest.

That being said, all in all, mentally I’ve been having a rough couple of days. It’s hard to see the good sometimes when the bills are stacking up and you’re not seeing any improvement. But thankfully, I have my husband, my family and my wonderful friends! As well all the positivity that have come out of this blog! So tonight, I’m making myself go to bed and let the negativity out of my system, because tomorrow will be a better day, I’ll make sure of that!

Here are a couple more pictures of my head/brain, spinal cord and a profile view. All I’m saying is an MRI does nothing for my boobs 😉

This is a view of my spine! Sexy, huh?

Walk MS: Erie

Won’t you consider joining Team Tapper as we walk for MS on May 4, 2013? And if you can’t join us, consider making a donation. The MS Society does so much for individuals with MS so let’s do all we can to support them! But I do hope you’ll join my family, friends and I as we walk on May 4 at 11 am. I’m sure it will be fun 🙂

http://main.nationalmssociety.org/site/TR/Walk/PAXWalkEvents?px=11652617&pg=personal&fr_id=19843

Here is the link to my page, please think about joining my team or making a donation.