The other part of March 17th was my sister’s bridal shower part 1.0.
The 2.0 version was in Baltimore the weekend after (I unfortunately wasnt feeling well enough to make the trip but I heard it was lovely!).
Very good friends of ours put together a LOT of the shower, as well as were our hosts. I was in charge of the fun items: games, prizes and favors. I’ll do a DIY session with some of the creations.
It was a lovely time, having our family and our friends together. Having moved as much as we have growing up, it is nice to be in an area where we have community. Something to be very thankful for.
Bride with MOH and two bridesmaids
Mother of the Bride and Mother of the Groom
The girls of the family
Bride and MOH…aka sisters
For additional pictures of the shower, please visit here.
Thank you to all that made the day so special for my sister, those who traveled far, those who hosted and those who have loved and supported us through it all!!
Looking forward to the wedding in August!
PS: wouldnt be complete without a day after photo-shoot of normalness.
we’re so cool…cant even stand it
March 17th was a heck of a day! For two reasons: 1, my sister bridal shower and 2, my twin brothers birthday!!!
Yes, it is also St. Patrick’s Day. We celebrate/decorate for this day for two reasons:
- We are part Irish
- My twin brother’s were born on St. Patrick’s Day (it was planned)
So…my mom did a great job on decorating the house in green!
(My mom has a love for salt and pepper shakers; she has one (or two or three) sets for every holiday. Notice the Star Trek and Out-house shakers as well.)
Some of my dad’s side of the family came into town for my sister’s wedding and thus, the twins birthday as well. We had a very yummy brunch, sharing stories and catching up. It had been a few years since we had seen each other and it was just fabulous. It was funny to see the quirks we get from that side of the family. (;
I can remember it like yesterday when the twins were born. Its a beautiful story. My parents told us that our family was to become 5, we were having another sibling. Surprise!!
But then one day my mom thought she was having a miscarriage. We went to a friends house while she and my dad went to the doctors for a follow up. When they came to pick us up, my parents faces where priceless: my mom’s = excitement, joy, yay!!, my dad’s = stunned, blank stare.
Apparently when doing a “final” ultrasound the doctor found not one, but TWO healthy babies. Twins!! Surprise!!!
Then we found out they were boys…surprise again!!!
Oh and at one time there was a joke that there might be triplets but it turned out to be one of the twins doing tricks on the ultrasound lady. Surprise!!! jk
My mom was determined and drove herself to the hospital that March 17th day, though she could barely fit behind the wheel. Two healthy babies were born and our lives were forever changed.
Being a family of 6 kids seems like a lot for many. But for us, its just how it is. It’s complete. It was meant to be this way.
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
We survived! We made it!! Bike MS City to Shore Accomplished!
And it was a fantastic trip.
First, I want to just say THANK YOU, to all who donated to Team Sparkle. We reached over our goal to $12,826, which is more than I could ever have expected. It means so much to have that support. You definitely made me smile. (: This whole trip couldnt have been done without your generosity, so, sincerely, thank you.
In my earlier post I mentioned that the trip began with the Farm Aid concert. This concert was a goal for me. A few months ago, when I was feeling rather low that life was running right through me, without me, I made a goal to attend this fabulous concert, proclaiming you cant say you arent living if you attend Farm Aid.
And it surely was a living experience.
The line-up was fantastic (see below) and the message was all but something to be supportive of. We had great tickets (benefit of being a disabled sometimes :D) and made it through the crowds of 22,000 people in my wheelie quite well.
Then came Ocean City, NJ for a week, home sweet home (kinda hah). The house we rented was one street over from where we use to live when I was little and before we moved off the island. It was a lot of fun to be able to just enjoy the ocean and the boardwalk and my family.
Sputnik and I woke up one morning to watch the sunrise. It was absolutely beautiful.
Its funny though as I looked down as we were watching the sunset (and took this picture)…as it illustrates my life. Footprints and cane prints in the sand. Life has changed. But Im still a Jersey shore girl.
Mom and Dad celebrated 29 years of marriage (wohoo!!!!) and took the night off to go out to dinner in Cape May where they went for their 10th anniversary. Driving by our old house (which was, at the time we lived there, a babe) was challenging as the new owners have not kept it up as to be expected. But overall I believe they had fun.
My Uncle Paul and Aunt Bette Ann (from my dad’s side of the family) made the trip down to visit for dinner. My Uncle Paul is quite a sparkle supporter and a fan of my blogging. He said he knew he had to bring three things: roses, starbucks giftcard and sparkle. And he did: they brought me a beautiful bouquet of roses, a starbucks giftcard I used shortly after and the sparkle I told him was their visit. (: It was a wonderful time.
The boys and dad spent the days preparing by taking long bike rides and prepping their butts for the 150 ride. Towards the end of the week I started to feel a little less than wonderful (weak more so) and an executive decision was made that I would only participate in the last 5-6 miles of the race instead of the practiced 25.
Friday night was a fun surprise when two of my best friends came to visit. It was truly so good to have them there and be SO supportive. And we laughed, a lot. Which I do with my family regularly; it is just nice to have friends that do the same. And they only helped in me feeling extremely loved and supported.
Saturday started the bike race. The men started out very early (I believe around 430am).
Captain Team Sparkle aka mom organized our whole team and really we could not have done this without her! And she made us cute sparkle sweatshirts. (:
I met the team right before the bridge to cross over into Ocean City. Now this bridge, for a girl with MS and a recumbent, was quite a challenge. But I made it. The fun part was that going downhill, I got up to the speeds of about 30 mph. It was quite scary (and I definitely concerned the rest of the team as I was speeding down) but in my head I kept thinking “the faster I go, the less I have the peddle!!!”. Typical.
(across the bridge…their concerned faces :D weeeeeee)
(brothers and I after the race)
Saturday evening my friends sparkled me with love (literally…they took sparkle dust and sparkled it on me) and provided me with a crown and a wand. Loved.
The men still had a day of 75 plus miles. Which they completed with smiles on their faces and only slightly sore bottoms. The best reward I believe at that time was the after race massages they all received. (:
Due to the generous amount of donations, we all received VIP status and VIP shirts. Something we will always treasure (or at least I will :D).
Sunday evening we spent together as a family on the boardwalk (missing two family members sadly, C and T, and soon to be A). It was an absolute beautiful night, we all wore our sparkle sweatshirts and I wore my sparkle shoes. It was just a wonderful sparkle filled night.
I am SO thankful, again, for the generosity of all those that donated to team sparkle, all those that supported us through letters of encouragement, for my mom who organized the whole adventure, for my brothers and dad and mick who rode the 150 plus miles, for my friends who came to support me physically and for God who helped me have a really good week. And to the ocean. For the strength it provided.
(this is actually where I use to do all my dancing as a child. Another “life has changed picture”)
We all said we couldve spent another week or two at the shore. For me personally, I think ocean therapy is exactly what I need to get back on my feet. (: But coming home to Pittsburgh wasnt too challenging as it is beautiful, cooler weather.
Thank you again for all the support. Bike MS races across the country raise money for a very worthy cause: to provide hope and research for a cure for a disease that has none. So thank you.
For additional pictures of the trip, visit: https://www.facebook.com/media/set/?set=a.645920224980.2074072.144900133&type=1&l=7697416077.
Much LOVE!!! Eliz
my lovely parents took a road trip to dc this weekend to rescue all my belongings from storage (yay clothes and jewelry and shoes I will never be able to wear again!!!) while my brothers went rock climbing. which meant i was in house charge.
the plan was to have one of my gf’s come and spend the weekend with me, to bond with me and well, babysit.
unfortunately yesterday and today have been just awful, painful days. so i decided the best thing would be to stay in, by myself, and rest.
all by myself.
well, with two crazy puppies who were very hyper. the whole time.
it was the first time this had happened since March 22nd, 2012. thats a long time for a girl who just spent a whole year living on her own.
what i learned from this experience:
1. I really needed the time to just relax, which was good.
2. I can survive by myself with MS. I dont want to be by myself and I miss my family, brothers, bf, friends, etc. And I probably cant survive for very long (see below). But I can survive.
3. I really am not good in the kitchen. My day of meals consisted of Starbucks and ice cream with a banana for dinner. #baddietday
4. It made me realize how much support I have. A friend called last night just to say that he loves me on the good days and the bad. I dont have to just be “seen" on my good days. The bad days come with this journey and thus, are a part of all my relationships. Im thankful for all those who have stood with me through this, that have made it possible so I am, in fact, not alone, not all by myself.
5. I watch a lot of tv when Im alone. new fav show: married to jonas.
Overall, it was a good adventure. Like I said, I survived.
But Im glad to not be alone too. Im glad that Im blessed with the wonderful support group I have. Very glad.
Love and night and thank you, Eliz
Today has been a good day. I’ve had some energy and spirit enough that I felt like “me”.
I know that MS is redefining that me in many ways currently. But there are some things that MS wont change or memories it wont affect.
So I started to write them down. A list of things about me. memories of my life so far. It was a very wonderful exercise to do, allowing me to realize how much I’ve lived and sparkled.
Ive decided to share a few of my highlighted moments. Personal perhaps but one day I’ll be able to look back on these and again feel enlightened as I did today.
I also encourage you to do the same, to take the exercise of creating a list of “me”.
Things about me:
Regardless of how MS changes my future, I can gladly look back on my past and look in the mirror and see sparkle and a life well lived.
Thanks for letting me share my moments! Please feel free to share yours with me if you’d like! This new site allows for much more social interaction. (:
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house with my arm crutches and wheel chair for outside visits. My legs will buckle or I’ll have a little limp but this is I guess to be the new “normal”.
My arms/fine motor skills are dependent on factors, such as how tired I am, if I’ve taken my meds, etc. It is rather frustrating when you tell your arm “reach for this” and the brain just can’t get the message there. I find myself having to come up with clever ways to do normal things. Example: text mom to help. (: (Love you mom!) I also am still experiencing quite a lot of tremors in my hands when not in “resting” position. This makes it challenging to eat, write, fold clothes, life. But I see it getting better daily.
My speech is probably where I’ve noticed the least progress. One of the things I have always loved to do (since I was about 1) has been talking. To not have that ability is quite challenging. The upside, sparkle side of it is though it has turned on my listening skills. Listening to music, to others, to mother earth, to God, to happy vibes, to whatever it is around me. This I am thankful for.
Fatigue. Let’s just say I slept 14 hours last night. We will leave it at that.
Cognitive. I have noticed change in my short term memory but this is only natural due to where the lesion is as well as due to adjusting to medications. This has been improving.
MS is a challenging disease for everyone that has it. But for me, what has been most challenging is its unpredictability. I have no idea how I’ll feel in an hour, 10 minutes, next week, next month. I’m a planner. Having your life be so “unplanned” is a huge burden for me.
Now, do I sparkle? Well, of course. (: My spirits are high. I am thankful that I can see progress daily that shows improvement. I am thankful I have one of the best MS doctors looking out for me as a patient. I am thankful for the MS Society and all they are doing for me. I am thankful for so many things.
I am thankful I can still sparkle. Which is hard for a lot of people who have chronic diseases. I contribute it all to your support, in whatever way you share it!!
So thank you, please keep it up, and know that I have my good friend St. Therese looking out for you too (all my readers). Religious or not, having people in high places sending you good vibes cant be a bad thing. (:
Have a glorious day, hope for all those that have MS and HOPE FOR A CURE!!!
PS: side note: send some support to my little brother as well. He is at summer camp and we just learned last night that he has second degree burns on his foot due to boiling water being spilled. poor kid. his spirits are high and doctors say its healing nicely!
"when it rains it pours. but you wait and hope for that rainbow"
my favorite little sister got engaged yesterday!!!
In the cookies of life, sisters are the chocolate chips. AMEN
(ps found this quote and just thought it was adorable: I know my older sister loves me because she gives me all her old clothes and has to go out and buy new ones. ~ 4-year-old
Poker Sunday! (post church of course). John is distracted by all his poker chips he won. We missed our other two poker players!! (Taken with Instagram)
Mom and John totally beat us all out to the end. I kept getting charity pieces because “I have ms” *insert puppy dog face* (yes, still a princess :D) (Taken with Instagram)
It’s been 4 months since I’ve been diagnosed with multiple sclerosis.
In a way it seems like yesterday, in another, for.ev.er.
I recall March 21st calling my boss, saying something along the lines of “I cant feel my legs…do you mind if I go to the ER and have it checked out?”. My thought was that it was some type of infection, something an antibiotic could be fixed. NBD.
It wasnt until I was rushed through ER, admitted within 1 hour, sent for a MRI immediately and was being seen and questioned by a team of doctors that I realized this might be something bigger than an infection.
It was 10:30pm and my boyfriend was helping me get ready for bed before leaving when the nurse came in with a phone call from the neurologist. He had reviewed the MRI and with the lesions present confirmed that I had MS, had an inflamed lesion on my spine and wanted to start me on steroids immediately.
I remember looking at my boyfriend and thinking “MS? Really? But I’m healthy. Ive never been sick.” We did some research on the ipad and decided well, it’s not that bad. People live with multiple sclerosis just fine. I’ll get better and we will be just fine.
And here we are, 4 months later, again in the hospital, with a different lesion on the brain. Ive always been known to go out with a bang, I guess the same applies to having this disease. (:
Somedays I feel as if everything that could go wrong has. I wonder when I’ll finally catch a break, a breather. But that’s life. If I kept on waiting for that breath I’d miss out on the beautiful things that are still happening.
For example, being able to spend time with both my mom and dad by myself (the first time since I was very little). Receiving many loves and gifts today in the mail (THANK YOU!). Making new friends. Being back in Pittsburgh. Being able to spread awareness of MS for others that cannot. To be able to share my story with you.
Those are beautiful things. And I’m SO thankful for them.
I finally got the courage today to ask my doctors “Am I going to go back to normal?”. Like all things MS, there is no definite answer. But the doctor did express that I should prepare to redefine my normal. And again, that the best thing we can do at this point is hope that I dont get worse.
I didnt cry when he told me this, though I really wanted to. I wanted him to say “hey guess what? I received an email saying we found a cure for MS and you’ll be able to walk and play the piano and give speeches and have kids and wear heels and go shopping for hours!”. But he didnt. Of course he was extremely sympathetic and caring, as all the doctors have been. But I could tell in his eyes that the hope for recovery is less.
That doesnt mean I wont stop fighting. I can build muscle and I can work on my fine motor skills and I can work on my speech. And that is exactly what I will do.
A family member sent me an email today, saying that our family is full of fighters. We are strong, determined and stubborn. I have those characteristics from both sides. Im one tough cookie. (: And so I continue to fight. And I ask you to continue to hope.
I do almost everything differently, but its not a huge deal. I just need practice.
HOPE. And thank you for all those that sent a message. It really did make this hard day so much more manageable. (For those thatd like to send a note, to me or one of my neighbors, see: https://ecards.upmc.com/default.asp.)
I have a running list of “Think of daily” that I read each night and every morning. If you’d like to add a special thought or be added to the list, feel free to let me know.
Thank you for allowing me to share my story with you. I posted a video earlier of MS awareness; I highly encourage you to take a look and share. The more awareness, the closer we are to a cure!!