love to all my fellow MS sparklers!!! <3
Meet Atom Willis.
A luxury men’s clothing line label.
With the mission of ending MS, on finding a cure.
My new best friends pretty much.
10% of their profits go towards MS awareness, MS research and MS hope.
Help them out by spreading the word!! Or by purchasing some pieces!!
It is fashion week after all!!
Much love sparklers, Eliz
There are certain things that happen in daily activities that bring me back to previous memories.
Before ms memories so to speak.
Today I had a very specific one.
I was driving to starbucks (surprise). It was a gorgeous day, sunny, warm enough to have your window slightly opened. And a breeze.
The breeze was what got me.
It took me back to about a year ago. I had gone to the DC office and was headed home.
DC traffic is awful, truly awful. But if you leave at a certain time, sometimes you can miss it, or at least skip the stop and go traffic and maintain a speed higher than 10 MPH.
This was not one of those days. It was a stop and go, 1.5 hours to get home kind of a day.
But it was beautiful. Last winter was very kind to NOVA.
Sun-room open, fun songs playing, thoughts twirling through my mind. Thinking about the meetings I had that day and how we could make that potential lead a client.
Phone call…”Eliz, we need a proposal, looks and sounds like this, get it by Wednesday?” Sure thing. Mind turns to proposal writing and creating an outline.
As I remembered and relived these memories, I couldnt help but let a tear fall.
I was on my to becoming Miss Corporate America.
I even had the picture ready.
I had worked so hard to be where I was at. I had sacrificed so much. And I was happy, content, pleased with my job. I liked going to work, and it wasnt just because we lunched and I worked with my friends. It was because I felt I was making a difference, I was working for a company with a strong corporate purpose. It was cutting edge, modern, new-age, and I was right there with it.
All my life, I wanted to become either the first woman President or the CEO or President of some company. Those were my dreams. Those were my hopes.
And a year ago, I could say that I was on my way.
Now, I feel like I peaked at 25.
It hurts so much to think of the potential that was left behind. The potential in me that cant arrive because of a disease that’s eating away.
Yes, this causes me to question why I worked so hard, question God even. Why?
Why couldnt I just live the life I had worked so hard for? Why do I have to live this one instead? The one that has me tied down, the one that dictates how my days go.
I want to hate this life. I want to kick its butt. I want to run away, run back to a year ago and press pause. I want to go back to the moment that my immune system went cray cray and take some extra vitamin C. I want it to stop.
And then I come back to the realization…there’s no use. This is just the way life is.
Its not fair though.
I dont know why I get to live this life and watch while others get to live the one I so wished for.
But I do.
Its good to recognize my frustration, my disgruntles with my current life status.
Its also good to realize that I cant go back and change it. I can only learn to adapt and make sure I have control over what I can, such as my approach towards this new life.
Which today isnt a good approach. But its a real approach. And sometimes, at the end of the day, thats all I can give. A real, honest, I hate MS approach.
And if I cant be Miss Corporate America, I guess I can settle with Miss MS Sparkling Princess.
To sparkling tomorrow.
Today met my second infusion date. It was much like the first except I knew what to expect this time.
Of course it took a few seconds to find a vein but the nurse is experienced and didnt poke around, fortunately.
For 6 months (6 infusions) I will be monitored. I tried to hint to the nurse that it was “possibly 3?” but no, its 6.
It does provide the perfect opportunity to catch up on my magazine reading.
(when did Dakota Fanning get so old?! Makes me feel old!!)
It takes about 6-12 months, from what I’ve been told, to see if the medicine is actually working. So of course we just hope that it does.
Going to the infusion center always disheartens me for there are so many other MS sparklers who are there for the same reason. Every month. They know the drill. It can be a difficult path to follow.
But, in the end, I was excited to receive the pink zebra bandages (side note: why dont ER’s use these instead of tape? So much less pain would be involved!)
So in summary: I survived another infusion, received more empowerment to sparkle, hope and create MS awareness and left fashionably with my favorite color and print.
Hope all of you are having a great day!
Much love, Eliz
Today “The Sparkled Life” blog here on tumblr hit 10,000 views.
I am so amazed and humbled by all the support!!
You will never know how much it means to me!!! Every view is a little push to keep me going, to keep me fighting. My stubbornness only goes so far…your support pushes me over (in a good way!! :D).
Hope you are having a wonderful day!!!
This may seem like “well, duh, I hope you shower” but lately this is a huge victory. Showering has just not been my thing. So sad.
But shower accomplished! I even did my hair.
It is cause for celebration picture.
Easy MS sparkler tip: put hot curlers in hair. Let sit for about 20 minutes. Take out and transfer in velcro curlers. It will help bring down the curl and up the volume. Plus, its takes so little energy to do so!
Happy super bowl day!!!
“So…what exactly do you do all day?”
This is a common question I have received since the day I was diagnosed with MS.
At first, the question made me anxious, for I wasnt doing much of anything with my time. Then I would think that people were judging me for not doing anything.
Then it turned into disgust, as if how dare someone ask me that. Cant they see I’m doing the best I can?
When really, the true life story is: Im sick, with an incurable disease, that’s kinda serious, followed with a few disabilities.
But regardless, see below:
Im fighting a tough fight. Everyday
Im sure some people think that I sit around everyday, eating bonbons (is it sad I dont even know what a bonbon is? Chocolate?). Or that I could be doing so much more.
Looking at my facebook, or even the posts on here, it seems as if I am very active. I take trips, I lunch, I do this, I do that. I even take vino days.
But that’s part of the “sparkling” factor; its hoping in those good days, and praying more come. Because these arent the “everydays”.
Reality is, most days I wake up late because I couldnt sleep because the day before I took a pill to help with fatigue that then caused insomnia. Vicious cycle.
I then spend a few moments with my brothers (who are home-schooled) and my mom, making sure they are confirmed of the below:
Afterwards, my “errands”, which usually consists of the post office, Walgreens and of course, Starbucks.
Everything takes about 2 times longer than before. Getting ready, getting in and out of the car, shopping, whatever it might be; I do not rush, I cannot rush, I just take my time. (Oh my gosh…Ive become that lady that pays with pennies when there is a line of 20 people behind her. Ok, not really. Or if I am, someone stop me please!!).
My schedule is also filled with doctor appointments, medicine pickups, MRI’s or other various medical experiences. Each one of these topics has a wait period associated with them. Just today, my 15 minute medicine refill wait was over half an hour. You learn to chill.
I usually get about 4-6 good hours out of a day; 8 if I take a vigil pill and a vitamin B injection.
Which means…lots of naps. Or just relaxing time. I need recharge battery time.
In order to keep my physical strength up, I try to bike a few times a week. This is tiring but in the overall scheme of things, I know the benefits.
And then there are the DIY’s. I was never a craft girl. But, I made a resolution to become one. As known, I have difficulties with fine motor skills. Also, with MS, it is always good to keep your brain moving and grooving. So hence, DIY. I try to stick to quick and easy projects but maybe one day I’ll move up in the world.
I get my nails done every other week, pedicures monthly. Massage monthly as well. I try to stay up on looking good so when people ask “How are you doing?” I can now respond “Well, at least I look fabulous!”.
Moral to the question: I do what I can. I never know how much energy I will have that day. I actually dont even know till the hour.
It’s difficult, as that quote above states. I was a busy body. I was always looking for the nightlife, the fast life, the work life, the social life.
Now I spend countless hours in bed switching from normal nerd glasses to computer reading glasses. Going from wonderful WTH moments to calming myself down with “this is life now” moments.
I am fortunate. I am still alive. And I do get to have good days. With friends, family and puppies. I have good doctors and medicine (all that is worth the wait). I have enough energy to still do the things I love, even if limited.
And while yes, I am fortunate to remain sparkly and positive (through what graces or powers these are brought are out of my reach), there are many with MS that do not have this fortune. Depression is a serious side effect. So many MS sparklers have reached out to me, telling me how hard it is to not be able to get out of bed, to feel as if they are losing out on everything.
Hope for them. Hope for us!
So in summary:
I live daily with MS. Its hard, its changed everything, but I do it. What other choice do we sparklers have?
Live proudly loves!!!
Love and sweet dreams, Eliz
2013 was to start off right away with my new medicine, Tysabri.
However, as is common in winter months, I came down with a terrible cold.
Due to this, infusion date was pushed back a week. And thus week was spent in bed, relaxing, spending time with the family, cuddling with the puppy.
Side note: having a cold as a MS sparkler is extremely challenging. I do not encourage it.
Eventually infusion day came. I was extremely nervous. I’m not exactly sure why. Perhaps a mixture of the fact that there are serious side effects, its a new medicine, its an infusion, nothing else has worked thus far, etc, etc.
The day began with a mom and me Starbucks and to the infusion center we went. They had really comfortable chairs, the nurse was able to get the IV first try (it must of had something to do with the amount of goldfish I ate the day before) and away we went.
The infusion takes about an hour. It doesnt hurt (or taste bad like those lovable steroid IV’s). After the infusion they kept me there for a while to monitor for any immediate side effects. Fortunately, there were none and I was let out early on good behavior.
I will have an infusion every 28 days. I will be closely monitored for 6 months and then tapper off as time goes on. It’s a scary drug yes but so far I feel positiveness from it in my veins (though I’m sure this is more in my head as it is too soon to know if the drug is working).
While at the infusion center, I made an observation. I will expand on this observation more at a later date as I plan on taking action due to it.
The observation was this:
Tysabri is a serious drug. It is for people who have tried other disease management drugs with no success. It’s not the last resort but its pretty up there.
During my infusion time, there were about 7 other people receiving their infusions as well. It was like an infusion mill. As soon as a chair was open, another person was in it getting hooked up. There was even a short waiting period due to lack of chairs for a while.
Granted, this is a special office/infusion center. There was a couple who had driven 3 hours to attend. So not everyone was from my neighborhood so to speak.
But what all these things added up to is that there are a lot of people, like me, though maybe their disease may be more invisible, who have severe cases of MS.
And yet, where is the research? Where is the cure? Where is even the answer as to WHY people get MS in the first place?
In 1868, Dr. Jean Martin Charcot wrote the first complete description of MS, categorizing, describing and documenting the disease. However, it is believed that MS like symptoms have been around since the 1400’s.
That’s 145 years of, yes, research. But not enough, in my opinion.
My observation only validates what I have known all along- there needs to be more awareness and research done in the subject of Multiple Sclerosis.
The other day, I was with a friend sitting outside a Starbucks. As we sat watching the people walk by, I made a very sincere, hold back tears comment: “I miss walking”. I watch movies or tv and marvel that characters can just get up and walk, run.
I cannot. And that is ok. Im learning to put together a new life that allows for a third leg (dance parties even included).
But to not be able to walk and not know the reason as to why is challenging.
Which is why one of my other New Years Resolutions (in addition to being crafty) is to do what I can, even if its just rambling on a a blog, to create as much awareness as possible.
When I was little and people would ask me what I wanted to be when I grew up, I would proudly say “The President!”. Ive chosen to leave those political days behind.
But maybe I can take what I learned and become the “Ms Sparkler Advocate” when I grow up.
I think its a good plan.
Regardless, if anything can be learned, its this: appreciate every day, for it all can change overnight. Focus on what has not been lost. Keep your sense of humor.
And remember: the sun always rises on a new day. Make it a good one.
PS: My best friend Kate, who is from Boston but actually lives in Argentina, is visiting for a week starting tomorrow!! We attended undergrad together and basically were each others must have bff go-to. We havent seen each other for a year so we are highly looking forward to it!
Vacationing in Cape Cod
A random country concert
Lifestyles of the Rich and Famous party. Lindsey Lohan and J-Lo. We were so cool.
It recently was suggested to me by a person that maybe Im taking this MS factor a little too hard. That yes, its challenging. But really, its just like a new coat, you put it on and you go. To stop making it such a big deal basically.
I see the point the person was trying to make And granted, I dont think this person really meant any harm in what was said.
But after some thought I felt, well, defensive and slightly hurt.
I have always been one to wear my heart on my sleeve; I say what I mean and I mean what I say (unless I apologize for what I said and then I didnt really mean it :D).
Im also very passionate.
So when you mix those two together, its not hard for me to justify this blog, which is centered around my life with MS, or my pictures, or my MS humor, or my MS posts or my hospital check ins.
Why do I make my health life so public?
I’ve shared this before, two reason summary:
1. Selfish reason: because I need all the support I can get in order to get through this. In the words of the lovely Catherine Zeta Jones: “There is no need to suffer silently and there is no shame in seeking support.”
2. Unselfish reason: to create Multiple Sclerosis awareness. As stated prior, there is so much NOT known about MS. No doctor can explain to me why I have MS. No doctor can explain to me why my lesions arent healing. No doctor can cure me. No doctor can take away my symptoms. This is the case for all MS sparklers. So if my story can bring some awareness, then I’d be denying the greater good by not sharing.
Yes, sharing the interpersonal beings of your health life is a bit, well, personal. And awkward. And maybe sometimes over the top.
I use to look at others who blogged about their lives and as much as I loved reading it, I would wonder what motivated them to write? What motivated them to share their life story?
And now I see; it was because they had a passion. Whether for art, music, fashion, DIY, motherhood, photography or just life, they were passionate enough to write it out for their audience, even that be of 1, to read.
Im going to take a selfish moment and say: I am damn proud of where I am today. I do have a severe case of MS. And I do have disabilities. And I have days where I have difficulty getting out of bed.
If I treated my MS as if it was NBD (no big deal), just a coat you throw on, then I’d probably still be in a wheel-chair, with terrible speech, using my weighted utensils.
Instead, I treat my MS as a big deal. A big deal that affects every part of my life and of those around me. And because I think this way, I wake up every day ready to battle the incurable b-word of a disease.
If I didnt fight, I’d be denying myself a well lived life. I’d be denying my family and friends and puppies the ability to stand with me. I’d be lessening the dignity of other MS sparklers in the same fight.
With that said, there is a factor in which I cannot let MS hold me back. Or my fighting MS become a curse that haunts my days. I must remain positive and hopeful. This is a work in progress but also something I have come to pride myself in; to remain positive and hopeful. Really, what other choice do I have?
In life you are handed certain cards and sometimes they are a great hand and sometimes they are terrible. But you still have to play them, you still have to work at it.
If not, you’ll have a growing to do list of dreams and things that wont ever be crossed off.
This may be one of my most defensive posts Ive written. And its discouraging to have it written right before the magic of the holidays.
But like I said, Im a passionate person.
And if I’m passionate enough, maybe I can contribute to a cure being found. And then yes, Multiple Sclerosis and other auto-immune diseases will indeed be NBD. But we’re not their yet. And until we are, I’ll, we’ll, be fighting.
Now, I must end with some type of positive note. Because it is Christmas. And I am thankful. To have made it this far with MS, to have my family, puppies and friends close by and to be a sparkling babe, good days and bad.
When we were children we were grateful to those who filled our stockings at Christmas time. Why are we not grateful to God for filling our stockings with legs? ~G.K. Chesterton
Much love, Eliz
As a child, I believed in Santa for, well, a little longer than I should’ve.
In my defense, when I was young (1st grade I believe), Santa called me and said that if I wasnt good (and I had been very bad that evening), he wasnt going to make a visit. I definitely shaped up that year and sure enough, he came.
Writing my Christmas lists were a very detailed process. I took great care into asking what I wanted for and Christmas morning came and my list would be there under the tree. Even things I didnt write on my list but had said I had wanted were there. Which convinced me he had elves everywhere.
Further evidence: we’d leave carrots out for the reindeer and sure enough, the next morning, they would’ve been reindeered chewed on.
As I grew, I started to realize that the tooth fairy, the Easter Bunny…they were indeed fictitious and my parents.
But Santa had to be true.
My little analytical mind went through all the reasons. And while I wouldnt be able to name all those reasons today, they were enough to keep me believing. A part of me was also scared that if I didnt believe, I might not get what I wanted (thats what everyone said at least!!!).
Well, one fatal day, I was taken aside by my mother, who expressed with deep sorrow that unfortunately, this year the family wouldnt be able to afford a keyboard. I believe we were in the process of moving (or considering moving) and she was going through all the reasons why I wouldnt get this #1 thing on my Christmas list.
I held it together but my head was spinning.
First, how did mom know my #1 thing on my Christmas list? That was sealed and sent to the North Pole! And what do you mean you cant afford it? Santa can afford anything!
Then vowing to never tell anyone that I believed for that long (obviously it eventually came out).
I guess one of the main reasons why I liked the idea of Santa was because you could write a list of your desires and then one magically day, Jesus’ birthday in fact, they would be under your beautiful Christmas tree.
So with that thought, I’d like to ask you a favor. I’d like you to be my Santa. And to help with my Christmas list.
Its very simple, only one wish.
My Christmas List:
1. Hope for those with Multiple Sclerosis.
Within this one wish, there are a few bullet points:
- additional research on the causes
- relief for patients
- hope for the spirits of all MS Sparklers
- specifically for myself that I can respond to a medicine and get this awful disease on a tame track
- most importantly: to find a cure.
How can you help with this Christmas wish?
Some easy steps:
1. If you know someone with MS, send them an extra note saying you are hoping for them, hoping for MS. You have no idea of the effect this can have on someone who has MS.
2. Donate to the Multiple Sclerosis Society: http://www.nationalmssociety.org/
3. Share and help create MS Awareness. Share my story, share others stories; all of it is greater awareness, which leads to great chances of everything.
4. People always say they wish they could “do more”. I will give specific instructions: when you are thinking of a person who is sick, send them a text. Send a prayer. Send good vibes. Again, it helps more than you know.
The hardest thing with having MS (and I know this is a common theme with many other MS sparklers) is the incurable factor.
To have a disease that has no hope of going away is a challenge to live with everyday.
For me, its extremely challenging, to be 26 and know that at any moment, I could have another relapse. That I will be on medications in order to live until further notice. That I will be dependent on those around me.
It can be extremely daunting.
Which is why we need Hope. (:
Without hope, it can be very easy to fall into the daunting spiral, circling down. Depression is a common and serious side effect of MS. But it can be helped with love and hope, from you, from me.
So that is my special request: for you to be my little Santa’s in helping with my Christmas wish.
And when I write my book on my journey with MS, with its final chapter filled with news of a cure, I’ll be sure to attribute it to my Santa’s.
Much love, Eliz
PS: And there still may be a chance that Santa is real. He totally called and left me a message today. Saying that he would bring me a car and to leave him french fries.
Santa sounds an awfully like my best friend.
In the past few days, America has been experiencing a lot of pain, a lot of hurt and a lot of questioning of the “why?”.
- Why was this person motivated to do such a bad thing?
- Why did this even happen?
- Why is it being turned into a political, 2nd amendment right battle?
- Why did it have to be children?
Its been a painful time, for all of America. Ive seen posts and articles from students and teachers that have survived, parents that have lost, people who live in the town and what they are experiencing. From my own network, Ive heard people say that they are holding and appreciating their children, nieces, nephews, etc even more now, holding them extra tight.
Its painful to see, its painful to experience.
But why does it take an experience such as this for us to stop and appreciate life, both here and lost?
We live fast pace lives. We always have to-do lists. We get anxious just sitting and doing nothing.
And then something comes along that stops us in our tracks, that makes us remember what really matters in life, why we are here, why we need to love.
Those children and teachers that passed away are saints. Because they stopped America, during the crazy holiday season, to think twice about those they love, to understand what life really means. Its not about the presents under the tree. Its about family, friends, loved ones, Jesus.
Its tragic and yes, we all wish it never happened. But we can take good out of it by acknowledging their life and their dignity and take moments to stop, appreciate and be thankful for all that we have.
During this MS process, Ive been able to stop and relax in my own life. I take the time to lunch with friends, to write letters to those that I love, to take pictures, to remember always the moments shared.
Ive written about it before, how MS has physically made it impossible for me to run, it literally stopped me in my tracks, stopped my fast pace life. And with that, has made me stop and actually smell the roses. I appreciate life and everything in it more now because of the stop.
At lunch today, a friend stated that sometimes those that work the hardest, the hardest is asked of them.
I believe this statement to be true. Life isnt easy. And some people are asked to walk higher mountains than others, though we all have mountains to climb.
Those in CT have huge mountains to climb right now. We can help by loving those around us, by loving strangers, by loving ourselves.
And dont forget. Its too beautiful of a lost to forget. Honor instead.
Love always, Eliz
“I will let fall a shower of roses”
There’s a cheesy fun movie called “New Years Eve”. Its one of those “follow 10 actors/actresses’ different stories and watch how they intertwine and it all ends happily” movies. Its cute.
Jon Bon Jovi sings a song called “Have A Little Faith in Me”, which starts as:
When the road gets dark
And you can no longer see
Let my love throw a spark
Have a little faith in Me
Well, that pretty much sums it up. My road was dark, I was having a hard time seeing the light at the end of the tunnel, I was having a rough time finding hope.
I cashed in a few faith points (as well as I know a lot of other supporters did in my favor as well; thank you).
And it worked.
During my “lets learn about where you are at” dr visit, I learned a lot about this new drug, the benefits, the disadvantages, etc.
I thought this was the knot at the end of the rope. But I learned there are a few next steps (a low chemo level choice….but still a choice) as well as information on some new drugs coming out on the market soon.
This drug has a lot of potential of not only slowing down the progression of this disease but also has the possibility of improving me from my current state.
Yes, the side effects are risky. And I will be closely monitored.
But I left the building with a lot of hope. Those faith points paid off. (:
I feel my plate is still very full. I have good days and bad days. But I was given a little bit more hope to hold on to. And for that I am extremely thankful for!
In other news, Christmas time is coming! (Just in case the commercials hadnt made it obvious). Our house is fully decorated, including the below which sits cleverly designed on my windowsill for all to see.
I hope you are having an enjoyable opening to the Christmas season!
Much love, Miss Eliz <3
Monday November 15th 10pm.
Opening night showing of Twilight.
Yes, I was there. “Team Edward” t-shirt and all.
I stumbled upon the Twilight series mostly by accident. I was traveling (a lot) for my past job and was sitting next to a same aged professional girl also on a business trip on a plane from pitt to Chicago. She was reading Twilight. She insisted I must get the book, its a great plane read.
Plus, I was spending my summers speaking to 1000s of youth; what better way to convince them that I was cool than to be up on the popular twilight vampire series.
I was hooked.
For some reason or another, I was always traveling or away on opening nights of the movies. So, I’d go alone. Me, myself, and 200 plus screaming girls at any site of Jacob taking of his shirt (fortunately this last one only had one scene).
This year, while I was surrounded by many supportive loves that would have gladly sacrificed two hours for the movie, I decided to keep the tradition and go alone. My dr’s note paid off, wheelie and I got in first and I must say, it was my favorite of the series.
It takes about 20 minutes to get home from this particular theater and while driving home, I was contemplating the post I could write about “the end of the saga”.
About how I started the Twilight saga in the beginning of my professional career, traveling all over the country. Intertwined in the series were a few moves, a MBA, an up the ladder job, a love, etc. I essentially grew with the series.
And as the saga ended, I felt like it was also the end of a chapter for me. Granted, I had no idea of what my future would bring (wouldnt we all love an Alice Cullen as a sister for future telling?). But I was feeling stable. Just like the movie ended.
So that was what November 15th’s post was going to be about.
But then I got home. I was getting ready for bed and started to feel sick. My breathing was heavy, my chest hurt and my throat started to close.
Perhaps a panic attack. Maybe Edward was just too much for me.
So I laid down, relaxed. No change.
After about an hour, I called a nurse, explained my symptoms and was advised to go to the ER. (May I mention, there are probably 10 Urgent Cares within 5 mile radius…none of them 24 hours).
So I wouldnt have to explain any of my past, I decided to drive to the UPMC that has all my history. Which meant I drove to the city, at 2am, yes, in my condition, solo.
I really thought it was strep throat. That I’d be home by 4:30 or so, before my parents would wake up, and it wouldnt be a big deal.
Well, 4:30am rolled around and it wasnt strep. And I wasnt leaving.
Text message: “Mom, Dad….dont panic……but…..”
The ER neurologist was very realistic (unfortunately, not a Dr. Cullen though). He saw my past, he saw my “love” (sarcasm) for hospitals, he saw that I was pretty much “healthy” which meant this was most likely due to MS and so he got real with me.
Two options: be admitted, get the tests done that day perhaps (it was a Friday…), wait through the weekend, then go forward Monday. Or (I liked the OR), go home for the weekend and get the MRI done Monday, coming back if I were to get worse.
Home I went. It was an ugly weekend. Not fun.
But my sister came home and that was exciting!
Monday had a dr visit early in the am and then the long MRI in the evening. A lovely day (sarcasm).
Wednesday was my birthday (yay!!) and my family and friends did a fabulous job of making it a great celebration of my life.
Thursday was Thanksgiving and very lovely! All the family was home and we had a very nice little break. I hope you and yours had a lovely Thanksgiving as well!
So now we are at following Monday. I get a call from the dr’s office. Whenever they call, you know its not the most fabulous news.
As always, good and bad news.
Good news: no new lesions!! Yay!!!
Bad news: one of my old lesions has flared up. This has happened about 3 times since first being diagnosed. Hence these “flare-ups” and pseudo-relapses I have.
What does this news mean?
Basically that the disease management drug I was injecting myself with 3 days a week wasnt doing its job. (Why cant a medicine work like its suppose to, just once?!)
So new plan: change medicine. I will be moving to a one month infusion (positive) of the top of the line MS drug. It has a higher percentage of helping MS cases (especially those with lesions on the brain) but also has severe side effects (I will be monitored closely).
The heartbreaking thing about this change is, well first, the unfortunate realization that the 8 months of painful 3 times a week injections didnt work.
The second, this is the knot at the end of the rope. If it doesnt work, there really isnt anything else on the market that “is better”.
So we do what we always do: we hope that it works, we hope that continued research is done and we hope for a cure.
Twilight Saga ended. But unfortunately my MS saga only gets to continue.
So thats the update.
I had a moment of “why am I telling the whole world of my MS health story? Its kinda awkward” the other day. The awkward part is true. The answer to the question though really lies in three areas:
1. Therapeutic for me
2. An easy way to update a plethora of people in one easy place
3. To hopefully generate awareness of MS, how it affects lives and why there is such a need for research and a cure
I thank you, for reading. For caring. For hoping.
Unfortunately we all cannot be vampires or wolves and live forever.
You get a birth date, a dash, and a death date.
The dash, thats life. Thats you. Thats your legacy. Thats what you did for yourself, for your neighbor, for the world. Something so small - yet so profound.
So while I’m living my -, I hope you join me in really living yours. Hell, if I can still find some freaking sparkle after this journey (granted some others have it so much worse) than so can you.
Make sure you are living your - to the best of your ability. Especially with the Christmas, holidays and New Year coming…make it a good chapter of your -.
Soooooo. Enough cheese-ball for one night? I believe so. (:
Here’s to HOPE as always. Here’s to retiring the Team Edward shirt. Here’s to continuing the chronicles of the MS sparkler.
Love always, Eliz
(this has nothing to do with this post but I thought it adorable)
A side effect of MS, which I have already expressed here, is fatigue. I have unfortunately been gifted with this side effect.
I have daily enhancements to help with the fatigue.
But its still a fight.
Due to this, my days are specifically planned to take into consideration fatigue and my energy levels. I believe we’ve come to a pretty good balance in my life.
And by we I mean myself and fatigue. We still have a ways to go before we’re friends.
While in rehab, I had daily schedules that began at 7am, included 5-6 plus hours of therapy and then visits, etc. However, since leaving rehab, I havent really had such long days.
Yesterday however, as this blog title represents, was the longest day in my career as a MS Sparkler.
The schedule went something like this:
9:00 am - Hair blowout and hand massage to prep for the below
10:15 am - Visit DMV. Get new driver license. Officially a PA resident. (I should mention this is a huge deal. Ive had an Ohio license since 2008. And havent lived there since 2010. Woops).
10:45 am - Thankful for a quick DMV visit (can you believe it?!?!) and head to a random post office to send in my disability / princess parking sign papers. Apparently they only accept them through the mail not in person. #fancy
11:15 am- Starbucks. Venti Iced Soy Two Pump Pumpkin Spiced Latte please.
11:45 am - Decide to drive into the city early. Reason: MRI. Start to become nervous. Good friend Reg makes a fabulous move and says she’d meet me at the hospital. Or else….
12:00 pm - Drive to city. Tunnel version.
12:20 pm - Arrive at hospital. Realize there is no way I can make it from parking garage to actual hospital entrance. Valet. $8. #perfect
12:25 pm - Although having been to this hospital many times (and spent many a day “living” there), I realize I have never “walked” in this hospital (besides PT work).
12:30 pm - Take a chill break in the lobby. A rush of emotions takes over me. Reality check of my life. But hell, I drove here. I walked in. #bettereveryday
12:45 pm - Go to check in at registration…they dont have me in the system. May I remind you, I lived there for over a week and have visited many times. #hospitals
12:50 pm - Go to admissions. She finds me and all my paperwork in the system. Prints off all my info at MRI registration so they’re aware that I am indeed “in the system”. #mykindofwoman
1:00 pm - Chill in MRI lobby. Look around. Im the only one under age 50 and pretty much the only one with a walking device. But I looked cute. #confidenceboost
1:20 pm - BFF Reg comes to the rescue, starbucks and all!! Of course as soon as she arrives its a whirlwind of moves and room changes and injections and needles. But was so thankful she was there.
2:00 pm - MRI time. Recognize the face of the MRI picture taker as the guy who inserted contrast in my vein, which failed and the contrast went into my muscle/places it shouldnt. I had tried to explain to him that “hey, this hurts” and his response was “only a few more picture and you’re done” and rolls me back in. But it legit hurt. My arm was double the size and had to get some pain meds/IV after that adventure. Fortunately, he did not put the contrast in me this time. #thankful
(the past contrast fail).
3:00 pm - Done!!! Decide it was treat time.
3:30 pm - Enter cheesecake factory. Spend quality time with reg. Laugh, tell stories, joke, talk girl things. #whatwedobest
5:00 pm - Head home. Traffic. Though Pittsburgh traffic does not compare to DC traffic, it wasnt exactly lovely.
6:15 pm - Home. Bed. Sleep. (:
Even though yesterday was very long and I did get tired by the end of it, it meant a lot to me that I 1, survived and 2, could do all that my schedule included.
I have good days and bad days. Which I remind to people who say “But you’re doing so well!!!”. Well yes I am, you only see me on my good days.
But the bad days arent as bad as they use to be. Which is encouraging.
And I survived a hospital visit which couldve been my haunted house adventure if I had let it get to me.
Which brings me to a point: how you react to situations is all up to you.
Things are going to come rushing at you, good and bad. Sometimes we do have an instinct nature to react a certain way (such as, stinkbug = yell for brother to come and kill and flush). Others though, we do have the ability to react wisely.
I found myself alone, in a hospital, in a big city, re-living the worst days I have ever had so far in my 25 years. I thought I was going to handle it just fine. Once there, I realized that this situation wasnt exactly “fun”.
So I sat and chilled. I calmed down. I realized I am better today and that is what I must focus on.
And then I moved on.
Thats how life is. You have to move on. If you dont, then you’ll be living a life of saddened regret.
Learn from your past. Dont let it hold you from your future.
With love, Eliz
PS: For those that didnt see my facebook post, I played the piano for the first time a few days ago. “Dont cry for me Argentina”. #bigmoment
PPS: Sputnik and I were trying on halloween costumes today. He didnt like the tu-tu. We’re still working on ideas.
A few days ago I was having a rough moment (it happens…we all have those days :D).
A friend texted me the following quote…which I will forever treasure:
“Keep sparkling baby. You never know who is going star gazing.”
The past week definitely had some highs and lows.
Highs: My grandma came to visit, which was a wonderful visit! We went to Starbucks (of course :D) and even went to the Mall, the first time I officially “shopped” at a department store since being sick. Big steps. Grandma bought me some adorable flats to fill the hole of my pumps and heels in my closet. We even found the sparkled plaid sperrys I had my eyes on. Good shopping trip.
Lows: Due to whatever reason, I had some type of pseudo-relapse, which caused me to become extremely frustrated. This pain that I am experiencing is just uncomfortable and really, in my opinion, with everything else, unnecessary. Hah. But I guess it is what it is. I have a MRI this week and a big doctors appointment next week which will hopefully answer some questions.
Ive shared a lot on this blog.
Silly things, emotional things, real life things, inspirational things and personal things.
Ive shared many stories of “the batman”, the person who stuck with me through the whole mess of my life the past few months, the man who I loved and dated for quite a time.
Multiple Sclerosis has ripped me down to my core. Literally. All those things I could hide behind or pretend dont exist or things that mattered “so much”, all taken away. The main things stayed, and the real me was exposed.
Through this onion uncovering, it became unfortunately aware that perhaps not all good love stories end happily.
Batman was never one for exposing personal things online. So I apologize in advance for this.
I debated whether or not to write about it.
But I found it necessary. Because this, this blog, is my story. And this is a pretty hell of a chapter of my story. And I felt it only right to at least mention.
To mention that I wish things could have turned out differently. Or that my life could have at least something right happen to it. Or that Im sorry.
To mention how thankful I am that batman was there, for all the moments needed. That he was the first to call when I said I was going to the hospital. And visited each time.
To mention that sometimes, I have no idea why in the hell life goes the way that it does.
But regardless, to mention that I am thankful for the moments had. Forever grateful.
I have no idea what my future will hold. I perhaps may be living in my parents “nursery” room until I am 35. (I have established with them that this is ok :D).
I just know that I have to keep waking up, keep laughing, keep drinking Starbucks, keep hoping…
and keep sparkling.
There will be a cure found for MS. Maybe not in my lifetime. But definitely for the next generation. There has to be a reason for these changes, for even this blog. Hopefully it brings a little bit of support needed to find that cure.
Much love, Eliz