Chicago or Bust

Chicagoorbust2

Looks like it is time for an update! So much has happened since my last post, and I want to make sure I share it with all of you. I have been given some great hope in regards to MS, and feel very thankful for that.

I am continuing to have numb feet, and some days are better than others. Today my legs feel not great at all, in fact, I almost tripped coming up the stairs at work today because I thought my numb foot had cleared the next stair and it hadn’t. I am thankful that the painful cramping and spasticity I was having seems to have been put to rest. It’s strange, but in the last two and a half years I think my feet have been numb more than I’ve been able to feel them. People always ask me how I do it with numb feet, but it’s not really a choice, it’s what I’ve been dealt so I make it work.

In my last post I wrote about the information I had sent to Chicago in regards to an evaluation for HSCT. Well, I had that evaluation with two doctors in Chicago on June 30 and July 1. I first had a bunch of bloodwork done and then the world’s longest MRI on June 30. I was literally in the MRI machine for an hour and a half. While lying in there I started to think the technician had possibly gone to lunch and simply forgotten I was in there! The funniest thing about the MRI in Chicago, to me, was that I had to go through a metal detector before going in. The thing would not stop going off, even though I KNEW I didn’t have any metal on me. I’ve always been told I have a magnetic personality, maybe that was it😉

On July 1, I met with Dr. Burt, who is the doctor conducting the trial. He was a super nice guy. I was able to go over my medical history with him, and he was able to tell me that I have two new enhancing lesions on my brain since my last brain MRI. While this is certainly not GOOD news, it is welcome because it helped to ensure that I would be a candidate for Dr. Burt’s trial. Towards the end of my appointment Dr. Burt he told that he thought I would be a candidate for the study, but he would have to discuss it with his colleague, Dr. Balabanov, whom I would be meeting later. The very last thing he told me was that he liked my personality, because it seemed to exude positivity. I left that appointment feeling pretty good.

After my appointment with Dr. Burt, we hopped in a cab and made our way to Rush Medical Center to meet with Dr. Balabanov, a neurologist who specializes in MS. Once again, I really liked Dr. Balabanov. He gave me a thorough neurological exam and at the end agreed that he thought I would be a good candidate for the trial. This was a huge relief. I just had to wait for the official call at this point.

So, overall, my trip to Chicago was a HUGE success. I didn’t hear back from Northwestern for two weeks, but when I did, it was official: I have been ACCEPTED as part of the clinical trial for HSCT. Woah…This was exciting and terrifying at the same time. Having a stem cell transplant will allow me to stop the progression of MS in my body, something that I could only dream about when first diagnosed. However, it will be a long road getting there!

stemcell

I have some wonderful friends who have started to plan a fundraiser to help offset the missed work and out of pocket costs I will have and I have also set up a go fund me. The financial aspect of the entire thing is terrifying. So, if you read this and want to or can help, keep your eye out for fundraiser details or visit: www.gofundme.com/kellytapperHSCT

I plan to document my entire journey. I’m just waiting now for insurance approval, which once received will send me back to Chicago. I will go for a week of testing at that time. So keep me in your prayers and positive thoughts, as all of that seemed to work the first time! I can’t believe that this blog is going to become a tale of how I once HAD MS instead of the documentation of a lifetime of struggle.

#ChicagoOrBust #StopMS #MultipleScrew-This

Chicagoorbust1

Numb Feet, The Windy City, and New Hope

Ok…6 months…I suppose that is kind of an un-necessary pause in blog posting.  I apologize to those who like to read what I write and hope that some of my faithful readers have stuck with me!

I haven’t had too much exciting going on, up until the past month or so.  Justin’s band played a show on Halloween, so I got to go out and enjoy some fun!  We even came up with a couple’s costume.  I’ll put a photo here, and see if you know what we were!

The Tappers Halloween 2014
The Tappers
Halloween 2014

November and December flew by, as the holidays tend to make them.  In November, I got to go see Uncle Joey aka Dave Coulier at JR’s Last Laugh in Erie.  I have a love of stand up comedy and am totally a Full House Fan Girl so this was an exciting night for me!  I got to meet him and take a photo with him after the show, and like any true Fan Girl brought my Season 1 DVD of Full House to be autographed.  I’m pretty sure that most everyone who was with me and even some who were not judged me for that!

Cut....It...Out
Cut….It…Out

fullhouse

November also gave me the chance to see one of my oldest and dearest friends, Mandy get married!  It also allowed me to reunite with my closes high school friends!  It was a great night of laughing, dancing and eating!  And anyone who knows me, knows I’m putting an emphasis on eating!  Fat kid forever!

Me, Laura, Mandy (The Beautiful Bride), and Lindsey
Me, Laura, Mandy (The Beautiful Bride), and Lindsey

Besides the occasional special event, November-March pretty much only consisted of trying to survive a brutal Erie winter!  You haven’t experienced winter until you’ve got 5 feet of snow, it’s -30 outside and your car is stuck in the driveway!  I know, I know….it’s Erie, I’ve lived here over 30 years, I should expect it….blah, blah, blah….I will never get used to winter.  I would prefer to make like a bear an hibernate!

I’ve been doing my best to help with the fundraising for the MS Society, both with fundraising for the walk and attending events that help the MS Society.  Once such event is the MSQuerade, which took place in February this year!  It is a Mardi Gras themed event with a Chinese auction, silent auction, face painting, food, a balloon animal guy…and so much more!  All of the funds raised go back to our local chapter of the MS Society, so how could I not support such a great event!  This year Justin was able to go with me, as well as a couple friends from work, Jenna and Rachel and our friends, Paul and Hillary.  It was such a blast!  We totally took advantage of the awesome photo booth that R. Frank Photography brought! And Justin and I walked away with a great prized from the silent auction :) My really smart friend, Allison was also there as is evidenced in the photo below!

Really Smart Friend, Allison and I
Really Smart Friend, Allison and I

Speaking of really smart friend, Allison…..I’m sad to report that she has moved to Virginia Beach to further her career.  The adult and good friend in me is happy for her!  The selfish child in me is very sad :-(  Allison has been my friend for over 10 years and on top of that has been a champion for me with my health!  I think that I shall be lost without her for a long time!

Team Tapper is preparing for their 3rd year in the MS Walk!  As always I have been working to raise money for our team.  The very kind Michelle arranged for the profits from the PACA craft show in February to go to Team Tapper!  We were able to raise $298 that day and that put us off to a great start!  I also sold raffle tickets for 5 weeks of raffles that are still currently being held by the Pittsburgh office!  I was able to raise about another $1100 that way!  Thanks to my kind and wonderful friends!  We also had a Cocktails and Color last Sunday to raise some money!  It was super fun and we got to paint an awesome sea turtle picture!  So many people from different parts of my life came to support me and even some strangers!

AGD's at Cocktails and Color!
AGD’s at Cocktails and Color!

I’ve also been continuing to kick grad school’s butt!  I’m still sitting at a 4.0 but will probably fall a little after my current class.  I’m ok with that though, one B won’t kill me!  Unfortunately, I will be taking some time off after this spring semester though.  It’s a long story and if you want to know more, contact me personally.  It’s unfortunate, but I am going to use my time off to try to do more good for our community!

Now on to the juicy stuff…

My health seemed to be holding steady for quite awhile!  I was hoping that my new medication was working the way my Dr had hoped it would.  But low and behold around the middle of March I started to notice numbness in my feet again, along with a lot of weakness in my left leg and cramps in my legs that would last the whole day.  I was beginning to walk like a pirate with a peg leg.  If only I could have talked Justin into a pet parrot!  I could teach it how to saw Multiple-Screw This!

I had 3 days of steroids the week of St. Patty’s Day.  I also had an MRI on St. Patty’s Day.  In the elevator of the hospital parking garage I ran into 4 people who were well into celebrating St. Patty’s.  Let me tell you, nothing makes you feel better when you’re feeling down than 4 drunk people in an elevator at noon on a Tuesday, wearing all green.  I probably could have used some of whatever they were drinking to get me through the MRI!

The Monday after that week I was still not feeling any better.  So two more days of steroids were ordered.  I ended up being off of work from March 16 until April 9.  I then worked a week of half hours, and today is actually my first day back to working full time.  (Only 210 minutes until I get to go home!!)

In my 3 and a half weeks off I really got down.  I hadn’t really had a relapse that caused me paid, but this one was!  Living with MS can be scary.  I can be fine one day and completely down and out the next.  My Dr is going to switch my meds and we’ll hope this next one works.  3 meds in two and a half years….something just isn’t working!

Thankfully, while I was off my friend Brooke pushed me to look for a better solution.  Brooke went to Russia to have HSCT to halt her MS and has had amazing results!  She alerted me to the fact that  there is a doctor, Dr. Burt, in Chicago who is doing stem cell transplants, HSCT, for MS patients.  I was intrigued.

I sent an email detailing the relapses I have had and the medications I have been on to the people in Chicago.  Imagine my surprise when I received a reply two days later to fill out a form giving more information on my MS journey.  I filled that out and sent it back and again, to my surprise, received a reply back letting me know they would like me to come to Chicago for an evaluation!  I then had to collect all my medical records, CD’s of my MRI’s and fill out a big, long form!  They have received that information and now I wait…..from what I have heard the wait time is about 8 weeks to get an evaluation.  Some one give me patience…

If I go for an evaluation and get approved for a transplant I would probably need to stay in Chicago for 2-3 months.  I would have chemotherapy at the beginning of the process, which means I would lose my hair.  But Bald is beautiful, right?  Who knows maybe I can do a head shaving fundraiser!

I’ll keep you all posted on this journey!  Chicago or Bust to Halt MS!!

Guess who’s back, back again….

I can’t believe I haven’t written a blog entry since May 21! Talk about being a TOTAL slacker! I’ll be lucky if I have any readers left after a break like that! There is just not enough time in the day for everything I want/need to do! So please accept my apologies and take a moment to catch up on this crazy lady’s life!

I turned 31 in June, which means that I have been living with Multiple Sclerosis for about a year and a half. That is crazy. It’s weird to remember a time I wasn’t sick. When every little symptom in life didn’t immediately trigger fear that I was having a relapse or when I had more energy than I knew what to do with. Now, some days I have trouble even getting out of bed. Maybe that’s just getting old and has nothing to do with Multiple Sclerosis. Haha Wishful thinking!

My memory seems to be slipping lately! I sometimes struggle to find words for things that I know and use often. Again, it could just be a sign of getting old  When this happens, I feel like I am playing a game of charades with whoever I am in conversation with. 2 words….1st word sounds like….I guess that at least conversation with me is not dull.

I had another MS relapse in July. I started losing sight in my eye. It was time to bring back my eyepatch! (AKA a yellow post it note stuck over my eye) I may not be fashionable but at least MacGyver would have been proud! Got myself a nice dosing of steroids and was on my way. The last two times I have had steroids I’ve found that they have been causing sever insomnia! I’m talking up all night, insomnia. You know it’s bad news when you see the sun coming up! I was however able to use this awake time for some very productive things: Homework, Netflix binge watching, texting my brother while he works 3rd shift and Facebook stalking. Just kidding….we all know the only productive thing in that list is Netflix binge watching! I mean have you seen season 2 of Orange is the New Black?

My neurologist and I came to the conclusion that perhaps it was time to change my medication. Since I had some trouble in May and again in July, perhaps the Tysabri I was on wasn’t working for me. Tysabri is the strongest med on the market for MS, but that doesn’t mean it was the strongest med for me. So after some though and discussion, I decided to switch to a newer medication called Tecfidera. The nice thing about Tecfidera is that it is a twice a day pill, which means no monthly iv needle! Hooray for less pricks in my life! A goal every woman works toward….

Unfortunately, along with new medications come new side effects! Mainly what I have experienced is some stomach issues and hot flashes. Stomach issues are old hat for me, something’s always making me sick to my stomach. However, the effect from the medication was a little more than I was used to! Thankfully, I’ve quickly learned I need to ensure I am eating with my pill, and that whatever I am eating contains a lot of protein. So much for ice cream for dinner! Now the hot flashes are a whole other story. That’s something new for me. Nothing like going about your business when suddenly your face is burning like the 7th layer of hell! Maybe I should have waiting until Erie winter to start the new medication! At least when it was -10 degrees a hot flash would have felt nice! Could have saved on my gas bill!

Other than that I have been kicking along. Doing some fun thins here and there! I did another color run in August, however I walked this time! It was still a ton of fun though! I feel like the summer went by so fast and now we are in the thick of fall! Before we know it, it’ll be Thanksgiving and then Christmas! How does that happen??

In September, I lost my mother-in-law, Jan Hanusik. She was a fantastic lady who supported me in every way, especially in regards to my MS. She always wanted to know what was happening with my doctor’s appointments, wearing her Team Tapper t-shirt, and helping in any way possible with my fundraising efforts. I was blessed to have known her and even more blessed to have had her as a part of my family. I will miss her dearly, and know that she is watching over Justin, Laurie and I, and will be cheering Team Tapper on every step of the way!

I have 7 weeks left of school and I will be done with my first year as an MPA student! That is hard to believe. I somehow have managed to keep my 4.0 so far as well! It seems it’s much easier to concentrate on my grades without all of the social activities I used to participate in! I will say I am glad I decided to pursue my degree online, otherwise I would have been that weird adult student in class. You know…the one I probably made fun of when I was an undergrad. I’d try to hard to be cool, and end up being anything but!

School takes up a lot of my time right now. And gives me a lot of my stress! I have already decided to not take on any large projects until I am done with school, which means, that I will not be planning a large fundraiser for Team Tapper and the MS walk next year! I will still be fundraising…..the usual ways, panhandling at the Peach St Exit on 79 and shamelessly begging! But really I will probably be soliciting donations, and hope to set up an online 50/50 raffle! Does anyone have any ideas for stress free, easy fundraising?
Well that’s all for now….thanks for reading!

Relapse, don’t do it when you wanna go to it

Positivity is easy when you live your day to day life much the same way you did before Multiple Sclerosis. I have been fortunate to feel great for the past few months, since July of 2013 when the feeling began to come back to my legs. However, recently I have no been so lucky. I have been having some severe back pain, and some issues with my legs, well I should say leg, my left leg to be exact. Then last week, as if my body thought I wasn’t seeing enough excitement I began to experience some tingling in my left hand. Boy, I sure am a lucky girl!

In the past week and a half I have had 3 MRI’s. One on my C-Spine, one on my T-Spine and one on my brain, two of these MRI’s have happened in the last two days. This morning I got the pleasure of reporting to Hamot Hospital at 7:15 am, I don’t normally go to work until 11:30 am so this was absurdly early for me. So far I know that there was a new lesion on my t-spine, however this little bugger is not active. So while not good news, I still consider it a win! My C-spine came back clean. Also, a win! I’m still waiting to hear about my brain. I honestly hope there is something there, otherwise I dont understand why I’ve been feeling they way I have. Am I crazy person who has phantom symptoms?

I have had bad days in the last week. Sometimes it’s hard to remain positive when you feel like whole world is crashing down on you. I try to spend my time putting positive energy into the world in hopes that the good karma will be returned to me. Apparently I must not have a large enough bank of good energy yet. The things that have been happening to me are what I worry about on a daily basis, getting sick at any moment. I can’t help but feel like a burden on those I love. I am currently struggling every day to get out of bed, to come to work….I wish I could just take a week off, but bills call and Lord knows I struggle enough with those without missing work.

Yet, I know that I will be ok. I will be ok mentally and physically. I have the dream team of support systems. My husband and my doggies who are with me every day. Justin supports me, even when I have crazy ideas and let’s me be myself, and keeps me strong when I am week. My parents and my brother who support me wholeheartedly through this craziness that is MS. My friends, who stand by me in thick in thin. When a situation like this comes along you learn who your real friends are, everyone says that, but I know it is true. I have old friends, new friends and old friends who have become new again who keep me going with their words of encouragment. I have been told more than once that I am inspirational, but it is only because all of you inspire me.

So, soon I will have 3 days of steroid infusions to help get me back on track in life. I may have had a rough few weeks, but I will not allow this disease to beat me. I am strong and a fighter and will continue to kick this disease’s ass so that I can educate others and bring awareness so that one day there will be a cure, not just for me but for everyone suffering from this disease.

Well that’s all for now….gotta go stock up on snacks for my after steroids munchies…..

msMEME2

It’s gonna be a bright sunshiny day

Team Tapper 2014 MS Walk Erie!
Team Tapper 2014 MS Walk Erie!

I get asked a lot how I can keep my positivity when faced with something like MS. It seems very natural to me. How can I not be positive in the face of this? Multiple Sclerosis has done a lot of things for me and to me, but one thing it can never do is take away my spirit.

Looking back at January 3, 2013 when I received my diagnosis, I had two choices, to retract into myself or to take this diagnosis and continue to live my life. I know there are people out there who do not have a positive attitude toward life or the disease, but really what is the point of that? I have been give an opportunity. An opportunity to educate those in my life and new friends that I meet along the way. I am not happy to have been diagnosed with a chronic illness, but I am going to live the best life I can with it. Because it’s certainly not going anywhere.

I started this blog after getting diagnosed as a way to express my feelings, educate readers and perhaps make a friend or two along the way. I’ve done all of these things in the year plus that I have been blogging. In fact, this blog has seen views from 45 countries all around the world. The Multiple Sclerosis Society in UK retweeted my Love Letter to Multiple Sclerosis blog entry and brought me some visitors from the UK. Each of these things is only possible because of my disease. I have received messages from people thanking me for speaking out about MS because they have a loved one who has it and does not want to talk about it. Why?? Why not educate people and empower those who have the disease to be the best version of themselves? Not just for Multiple Sclerosis either, for any illness or disorder that has a negative stigma about it.

I have been able to motivate myself to set goals and reach them. Things that before my diagnosis were “Oh I’ll do that eventually” and then brush it off and never do it. I ran a 5k. Anyone who knows me, knows that exercising is not my number one priority. However, I set a goal for myself and acheived it. I was able to plan and execute a large scale fundraiser this year to raise money for Team Tapper and the MS Walk in Erie, PA. We raised over $2000 at that event. I am back in school for my Master’s degree. It took me about 9 years, but I am there, because this disease has lit a fire in me to set goals and to reach them.

It is easy for me to stay positive because I am here. I am living with MS, which while not exactly great news, is not a death sentence. There are people out there who have much worse situations than me, with much less support. I am blessed with a supportive and wonderful husband, parents, brother, friends, co-workers and even strangers who learn my story. How can I not be positive when my community has supported me and encouraged me to be strong and open about this disease?

Now don’t get me wrong, I certainly have not good days just like everyone, and especially in regards to this disease. However, I choose to put my best face forward and continue to allow myself to be the best person I can be in spite of multiple sclerosis. Everyone has a purpose, and perhaps mine is to be a positive example of living with a chronic illness.

I know one thing for certain, I have not allowed this disease to defeat me, and I’m surely not going to let it now. I will continue to be positive in life and my struggles because of these strength that my loved ones continuously give me. I hope that each of you can find the positiviy in each day. I also hope that I have given each of you a little bit of knowledge of this disease, as well as a smile, a laugh or some sort of warm memory. Each of you is important to me, whether we have met or not. I draw my strength and positivity from the people who surround me. So, thank you! MS does not define me, but it sure has driven me to kick life’s ass!

Busy, Busy

Umm….hello….is this thing on? Yes…..oh ok….hello there audience! Time for a much needed update. I have once again been a slacker….but have no fear I have missed you all and am back to give you the run down on what’s been going on! I can’t believe it’s been two months since I’ve updated!

I started Grad School on January 19. That was scary to say the least! I am going back to Gannon University to earn my Masters in Public Administration. (MPA) I have high hopes of someday working in local government or with a non-profit organization. I’ll have to see where the wind takes me! Anyways, my first class was Ethics and Public Policy. It entailed a lot of boring reading, but also a lot of interesting reading. It got me thinking at the very least! I had to right a 3 page, a 15 page and a 25 page paper. These things were the most daunting to me, even with my English degree! I struggled a bit in the beginning, to get back in the swing of things, however by the end of 7 week class I was getting A+’s and ended the class with an A! Not too shabby for being out of school for almost 10 years! I’ve started my second class this week, and look forward to continuing my education. In 2 short years I will have my master’s degree!

That 4.0 sure does look good!
That 4.0 sure does look good!

On March 1, I attended the MSquerade with the lovely Jessica Nelson. The MSquerade is a fundraiser that the local chapter of the National Multiple Sclerosis Society (NMSS) puts on. It has a Mardi Gras theme with lots of yummy food and chances to win prizes through silent auctions, live auctions and much more! This was my first year going, and I was given tickets from the lovely ladies at Biogen. (The makers of my MS medicine, Tysabri) Thanks to very smart friend Allison for helping me obtain the tickets, it was definitely A LOT of fun!!

Jess and I at MSquerade
Jess and I at MSquerade
Looking fancy for my night out!
Looking fancy for my night out!

In the meantime, because I’m certainly not busy enough, I have been busy planning my own fundraiser for the MS Walk in Erie this year. I will be hosting The Catalina Wine Mixer on April 27 at the Brewerie at Union Station right here in good ol’ Erie, PA. There will be live music, food, games….just a general good time to raise some money for a great cause. (Not that I’m biased!!!) I have been busy lining up music, and figuring out the logistics. I’m currently trying to raise some money to offset my out of pocket costs for food for the crowd. I’ve sent a TON of letters to local Erie businesses in hopes of some help from the community. If you think you’d like to make a donation to help make this fundraiser a reality, just click
this link: http://www.gofundme.com/77gl3w And thank you in advance!!

That brings me to the point of the fundraiser; the MS Walk in Erie is on Saturday, May 3 this year. I am looking forward to going and spending time with friends and family who support me along this journey. I would certainly love to have all of you join us for the walk! If you would like to join Team Tapper and walk to help us find a cure, just visit this link: http://main.nationalmssociety.org/site/TR?pg=team&fr_id=22533&team_id=354639
If you can’t make the walk and would like to donate to our team, please do. Every dollar helps. You never know if that dollar you are donating will be the one that helps find the cure for this disease! As always, thank you for reading and I’ll be back soon with updates I am sure!

This is true!
This is true!

3….2….1…..MRI Blast off!!!

MS has provided me the opportunity to do many new things that I may never have experienced if it wasn’t for MS. Like, getting a hole cut in my jugular a tube shoved in, having a monthly iv of overly priced drugs and my first experience with steroids. (Therefore ruining my chances of ever professionally competing in same sex ice dancing….oh the humanity) One of the most obnoxious things that MS has so kindly introduced me to is the MRI.
If you’ve never had an MRI let me break it down for you, they put you on a backboard; slide you into a tube, and for about an hour of your life you are subjected to not moving, loud noises and of course, itches in places that have never itched before. Now, those who know me know that I have NEVER been a fan of sitting still, so doing so for an hour or more of time is like torture for me. So, to help myself through this torture, I’ve come up with a little alternate scenario in my head. I like to play NASA in that tube. I mean, if I have to be stuck in an uncomfortable situation, I might as well pretend to be an astronaut!
On January 2, I had my second round of MRI’s. A nice scan of my brain and cervical spine were ordered. Last year, my MRI’s were done on an emergency basis, so I had no time to sit and stew about the impending torture. However, this year I was scheduled in advance and as I got closer and closer to the date I got more and more nervous. Finally, January 2 rolled around.
I headed to the office where the MRI’s complete, and prepared myself for my impending space launch. Of course, before heading into space I would be stripped of all the metal on my person, earrings, necklace, wedding rings, belt, even my underwire bra. Ahhhh the glamorous life of an astronaut (aka MS Patient)! Upon boarding the space craft, it was discovered by the launch team (aka nurses) that I was also wearing eye shadow that contained metallic bits and was required to remove it before lift-off. Now that I was jewelry, belt, bra and makeup free I could begin my journey.
First, a protective head piece was placed over my head to ensure that no comfort would be found on this journey! Attached to the head piece as a courtesy was a nice mirror so that I could see my own feet and the two nice women who were sending me on this journey, I think it was to make me feel less claustrophobic. Once I was strapped in, my journey began; I was slowly moved back into my space craft (aka MRI tube). My launch team informed me that my mission would last approximately an hour and half when I would be safely returned to Earth, and all of my metal belongings.
Once in the tube, the space like noises began. The banging, clanging, whizzing, beeping craziness that, of course was due to the space battles happening outside of my ship!! On this one woman mission all I could do was sit back and hope for the best, and that my team back on Earth would bring me through unscathed. And then the unthinkable happened…….my nose began to itch!! Being strapped to this board, and unable to move for fear of disrupting the mission, what could I do?? I tried to forget about it and even to wiggle my nose like rabbit….no relief to be found! Oh please let this mission be done soon!!
Just when I thought there was no hope for me, the board began to move and I emerged from the tube. I thought I was finally home free! But boy was I wrong…..my launch team had just removed me to inject me with a chemical so they could better see me while on mission. Back into the space craft I went (after a thorough nose itching of course!) Another 30 minutes and this mission would be complete. Once again, the banging, clanging, whizzing, beeping craziness began, and I once again feared I would never make it through! Alas, 30 minutes later, true to their promise, my launch team returned me to earth.
I was given back my belt, jewelry and bra; unfortunately I had to face the remainder of the day with a naked face! (Keep that in mind, when NASA calls you, metallic eye shadow is a no no!) I returned to my normal day with no one to the wiser that I had just spend an hour and a half of my life in space😉
Hope that you enjoyed my little story about the MRI space machine🙂 Gotta do what you gotta do to get yourself through! (ohhh that rhymed!) The good news that came from all of this is that I have no new lesions on my brain or cervical spine and no enhancing lesions! This is amazing news, as it appears that the Tysabri is helping to keep this MonSter at bay! That’s all for this time, my fellow space cadets! I’ll see you soon…..unless NASA really calls😉

Love Letter to Multiple Sclerosis…..

Here is a letter I have been meaning to post. I wrote it on 1/2/14 which was the one year anniversary of my diagnosis….Enjoy!

January 2, 2014

Dear Multiple Sclerosis,

We’ve been together now for a year, and the traditional anniversary gift for the 1st year is paper. So, I am writing you this letter. This is certainly the most difficult relationship I have been in, as you are definitely a fickle partner, but I’d like to share with you some of the reasons you’re not as bad as people may think.
When we first got together, I had hopes that maybe this relationship wouldn’t last. Unfortunately, it would seem that we are in this for the long haul, together. And while we certainly have had our share of disagreements over the last year, I am thankful that you have been a quiet part of my life for the last few months.
I will attest that our relationship has made me strong. I never really thought of myself as a strong person before, but thanks to you, I have been able to see the strength I have inside of me. Sure you have knocked me down a few times, even sent to me to the hospital once, but I have NEVER given up fighting and will never just sit down and quit. I know that I can handle whatever you throw my way, and I will do it with style and class.
You’ve challenged me to reach goals that you think you can stop me. I ran a 5k in September, despite your insistence to give me numb feet and legs for 7 months. You thought that you could keep me down by coming into my life, but I have welcomed you and used your presence to educate others. You thought that you could change my positive outlook, and you have not. Starting January 13, I will go back to school. I will not longer wait to achieve things that are important to me, because of you.
Somehow, you’ve single handedly helped me overcome my fear of needles. Which I never thought would be possible. So, thanks for that. You have also given me a connection with the MS Society in Erie, and because of that I found that I have an interest in working for a non-profit. So, just maybe you’ve given me the direction in my life.
Really MS, all I’m saying is that while this is certainly a volatile relationship, you have given me gifts that I never knew would come from you. You have taught me my strength; you have given me the courage to do things I may not have done if it wasn’t for you, and you have most definitely showed me who the important people are in my life.
So a year into our lifelong relationship, I want to say Thank You. Thank you for making me a stronger, more positive person. You have given me a chance to educate people and to be a voice for multiple sclerosis. I would certainly never have CHOSEN you as a life partner, but seeing as you’re here whether I like it or not, I’ll make it work. You will always be a part of me, but you will NEVER define me.

Love,
Kelly

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 :-)
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🙂

And I ran….I ran so far away

Well ladies and gentlemen, I did it! I did my very first 5k! On September 21 I awoke at 5 am and set out in a downpour to take on 3.1 miles….and I didn’t die! I also had a lot of fun doing it! The 5k I did was called the Color Run, and if you’ve never heard of it or done it, you’re missing out! Basically for every kilometer of the run, they have volunteers who through a different color of powder on you, so that by the end you are rainbow colored! Now, because it was pouring, the powder quickly changed to a paste and we were definitely multi colored by the end! But it was a first great 5k experience for me, and I finished in about 45 minutes…..not too shabby I’ll take it!

Before the run
Before the run
After the run!
After the run!
Group Shot!  High School Friends!!
Group Shot! High School Friends!!

Since the 5k I have been trying to keep active, visting the YMCA for a stint on the treadmill and also taking hula hoop classes again! Justin and I have also decided to stop drinking soda and stop eating deep fried foods. It has been two weeks since I had either. It seemed like a good idea at the time! HAHA I’m trying to lose a few of those pesky steroid pounds, I’ll let you know if it’s working next week after my neurologist appointment!

There is nothing new going on with my MS, which is a good thing! I go for my Tysabri IV on Friday, 3 hours of excitement await me! haha! I’ve started taking these days off of work, it is just to much on my body to go for this IV and then go to work for 8 hours. So starting last month, I will take these Fridays and relax after having my IV. Hopefully this will give me a little more energy to face life!

I am working on some new stand up jokes. I would like to go back to JR’s and try my luck again at making a room of people laugh. I succeeded the first time but have some stress that maybe it was a one time fluke that I was funny! I’ve also opened up discussion about whether it is appropriate for me to make MS jokes…I’m thinking because I have MS it may be alright. Let me know what you think!

Justin and I are also competing in a contest through Dahlkemper’s Jewelry Connection for cutest couple. If you are on facebook, look me up and take a second to vote for us! It really takes about 15 seconds, and I’d really like to win! the winner receives a pair of $800 diamond earrings, and I think they’d look fabulous on me!

I can’t believe it’s fall and that winter will be here soon! Another year almost come and gone! And while I was diagnosed with Multiple Sclerosis, I really feel like I’ve had a stellar year! I reached my second wedding anniversary! I learned the magnitude of love that my family and friends have for me at the benefit in March. I’ve made new friends. I’ve seen concerts. I’ve gone on trips. I started this blog, and got to speak to so many people because of it who have inspired me as much as I’ve inspired them. I’ve gotten more involved in my community. But most of all I’ve gotten to become a face and voice for this disease! Thank you for reading! I send you all so much love!