Music speaks to me. It calms me down, it lifts me up, it speaks my language. Lately, music has been especially useful as it helps me to tune out life and focus. This has been extremely useful in therapy.
So why am I expressing my love for music at 12am on a Friday evening? Because I have currently found a pandora radio station that is playing the most perfect songs I need to hear right now. Encouraging thoughts, peaceful thinking and positive, hopeful vibes.
Which is why I am not sleeping yet. (:
The art of medicine consists in amusing the patient while nature cures the disease. - Voltaire
I came across this quote the other day and fell in love. It greatly expressed how I feel every time I receive a card, a package, an email, a note, from someone out of support.
Amuse me, nature (and medicine and doctors) will cure me.
Ive been asked “how can I help you?” Or “I wish I could make it better”.
Well, good news. Im very easily amused. (:
Even the littlest card brings me the most joy. Thank you to all those that already amused me. My face lights up. Honestly. And then I add you to my “think of daily” list and you help me daily to get through this fight.
Its a true expression of “doing good upon others”, the ol’ “good deeds”.
Why not smile at that person at the grocery store? Why not randomly reach out to that person youve had a “friendship crush” on and ask if you’d like to get coffee? Why not pay for the person behinds you starbucks? Why not say “I love you” each and every time you leave the house? Why not?
Life has limits yes. But do not be scared to reach out of your comfort zone to appreciate the people around you. It’s like investing; smile at that one person and Im sure on that one day when you just think everything is awful, that smile will come around. Maybe from a really cute guy who adds a wink. You never know. (;
My situation is, for lack of better words, kinda sucky. I recognize this. But I also recognize that if I’m still nice to people around me (or at least try to be), it will come back just when I need it.
And this does not apply just to my situation. This applies to everyone’s life. We all have bad moments happen to us. (And if you havent, please be my friend so I can steal some of your positive vibes. :D). It doesnt mean that we should bottle our frustration or never cry over spilled milk. Rather it means that we should see that flowers still bloom, earth is still spinning, life is still moving on.
Then after we make accept this, we make the decision on how to make it better. How to get past it and make the situation better.
For me, I have no control of my case of multiple sclerosis. I could do everything right (and thus far, I pretty much have with regards to medicine, diets, vitamins, therapy, etc) and look where it has gotten me. Not that far from where I started, if not even further behind.
But what I can do is wake up tomorrow ready with a smile. I can go to the pool and continue my therapies. I can do my injections. I can choose to still live life. Its too short not to.
I may cry. I may have a bad moment where it becomes so overwhelming and I may let those tears fall. And that is ok. Because to not accept my situation would be to not accept my path in life.
Then the mail will come and I’ll receive an “amusement" card and it will help to wipe those tears off my face and encourage a smile. And who knows, maybe it will give me the strength to paint my nails.
So, to summarize: what comes around, goes around. A smile goes a million ways. Elizabeth writes a lot. (:
Pandora is ending this evening with “Let it be” by the Beatles. See what I mean with it jamming with my thoughts this evening?
On a side note, all those who are reading this that have MS, keep cool in these warm months!!! (For those that do not know, heat exaggerates MS symptoms greatly.) I had to laugh today as I lied down for a nap today. Ive traded in a stuffed animal for an ice pack. #thingsidneverthoughtidsay
Here’s to a good day tomorrow. Thank you for all your support! Enjoy your weekends!
For about a month I spent time at two UPMC facilities, UPMC Presby and UPMC Mercy.
Being in a hospital for a long period of time can be quite an experience. You go through many ups and downs, emotions, confusions, excitement, waiting, waiting…and more waiting.
I dont know exactly why it worked out the way that it did however I was fortunate enough to have an actual “great” experience at UPMC. I say “great” only because I would rather have not had the experience. But given that I did, it was a grateful time.
From the doctors, to the nurses, to the blood collectors at 6am, to the people cleaning my room and bringing my food, to the therapists…Thank you. You helped me to keep a smile on my face, a song in my heart and a sparkle in my step.
Thank you also to all those in the medical field! Please continue the mission of bringing health back to those who need it.
Ive heard it said that MS is the invisible disease. That from the outside, the person looks “normal”. And yet, just like any chronic illness, a person with MS suffers greatly, day by day. I felt this today as I look at the pictures I took of my great day (will post). I look “normal” and yet I feel so not.
To cope with this, there is medicine to help feel more “normal”. For MS I take something for my tremors (which seems to be working quite nicely). And I also take a disease management drug called Rebif that hopefully will work to help manage the disease and keep me from having any future attacks. (Side brave note: I was unable to get my auto-injector to work today; so had to inject myself. Felt proud. :D). And there is therapy.
But there is something to be said about positive thinking, friendship therapy and overall keeping a calm mind.
Today my friend Zach was planning on coming over and hanging out. I was nervous, as this was going to be my first real “outing” post hospital rehab. But I put on some make-up, some toms and headed out the door with confidence and some lovely forearm crutches. And of course, some sparkle (and YOUR support!).
Well, for 4 hours, I had a lovely time. Zach and I went to lunch, he was ever so patient with my speech as we got caught up on life, we went to starbucks (true friends share the same specialty hm drink) and then decided to just go do a drive by “look” at the BMW dealership cars.
Today was our lucky day.
BMW USA was sponsoring a “test drive” day, where for every person that test drove a BMW, BMW USA would donate $10 to the Olympic team. Zach and I participated $20 worth. (: It was just lovely! I got to feel the speed of some lovely cars from the passenger side (AC full blown!!! it was hot today) and we had a lovely time admiring these powerful cars.
And to top it off, when I got home, my puppies had on adorable t-shirts that read “Someone I love needs a cure…MS awareness!”.
This morning I wrote “MS will not define me”. Today I lived that quote. Of course it wasnt easy. Each step takes more mental thought than I can explain. My whole bodies nerves have what I call “dance parties”. I struggled getting my thoughts out and had to pick a meal that didnt involve any utensils. And now, Im ready for bed. (:
But I did it.
There is a quote that I love “throw your body over the bar and your heart will follow”. Its from the book “The Power of Positive Thinking” and comes from a story of a pole jumper who just didnt know if he could jump that extra inch.
Sometimes you have to have enough faith in yourself to walk out the door, dragging your heart. But eventually it will catch up. If it doesnt, then maybe you were walking in the wrong direction. (:
I hope this improvement continues. I will say, I do have a nervous twitch that things are just “too good” and that tomorrow I’ll wake up with a new symptom. Who can blame me, this has happened twice. But I have to remind myself that I cannot think that way. That life is too short.
If I had woken up this morning thinking “damn, I have MS and I just dont think I can handle it”, then I probably wouldnt have had the great day that I did.
Today I am thankful for some healing I can see/feel, for friendship, especially with Zach, for puppies, for mom’s who buy puppies cute shirts, for my dad who encourages me, for my brothers who help me with everything around the house, for my grandma and her roses, for my bf who always encourages positive thinking, for the support, for you, for life.
Focus for future: take YOLO seriously (you only live once FYI). :D Spend it wisely, with the ones you love. Take each day for granted. Smile and sparkle. And hope. Hope for whatever dream you have.
What a trip. Leaving the hospital (though I will say, I did appreciate my time there as well as anyone could at a hospital; will post about that at a later point), brought the biggest smile to my face. I was so ready to come home. I felt like a kid on Christmas morning I was that excited.
And home brought some lovely surprises. The family decorated the kitchen with orange streamers and a sparkle sign. Daddy brought my flowers. I got some lovely new presents (presents are my favorite!!). And the puppies, well, were overly excited.
It was quite a welcoming.
The part that was hard was that I had it in my mind as soon as I was home, I would be “healed”. That I would be able to walk and hold a normal fork and hold a conversation. Unfortunately, this is not the case. Its a constant struggle to not let this discourage me.
It was easier to accept my disabilities in the hospital. In the hospital you have the mindset that yes, you are sick. This is why you are here.
At home, your mindset is peace, harmony, “lets do everything we can do to fit in this day”. YOLO mindset.
To mix home and disability is not going to be easy for me. I have to “relearn” how to be at home. Fortunately I can get around pretty well with my fore-arm crutches. And we’ve rearranged and organized my room for…my favorite word…efficiency. (: And I have a lovely family who takes care of me and spoils me (no laundry or cooking yay!!!).
However, even though my symptoms havent changes, my spirits are high. I am happy. A little stressed about bills and the future and how the Steelers will do this season. But I am happy.
One of the most highly suggested MS therapies is anything to do with water. So yesterday I went and watched my brothers at swim team at our pool then spent about 40 minutes in the water doing my rehab exercises. I was nervous at first (you can see the picture how tense I was hah) but overall, it was the best I felt in the past 4 months. I didnt have tremors. I “walked” without having difficulty. I felt “normal”. Well, besides my voice. It was the best high I’ve had in a long time.
Because of this “high”, I had this great mindset that I could conquer the world. So I tried to do too much the rest of the day and, as warned by almost every doctor and MS specialist, this did me in. By 7pm I was done, symptoms worsened and ready to collapse. It was discouraging.
But daily I get stronger. Daily I do one more thing I couldnt do the day before. Daily I receive support from people who love me. Daily I am loved.
I recently saw a picture of myself the day I drove myself to the hospital and was diagnosed with MS, 4 months ago. Compared it to a picture of myself on the day I came home from the hospital. Besides the loss of my tan and my need for an eyebrow wax, I still look like me. I am still me.
My life may have been turn around. I may be disabled, I may recover, I may get worse. But I’m still me. I have to remind myself of this constantly. I have to build this confidence up. For when I go out into public, people do stare. When I open my mouth, people do a double take. I dont blame them. I just have to keep reminding myself: I am still me.
MS doesnt define who I am. I define who I am.
Please continue the support. Heres the plan for the next few weeks:
Luckily (well hopefully!!) the hospital chapter is over.
The next chapter is outpatient rehab where I will continue my exercises and therapy. We also are converting our basement into a “home gym” so I can do my daily therapies at home as well. And continue pool therapy.
The third chapter is to determine how I am actually doing with regards to the disease. I have an MRI (my 5th in 4 months…becoming a pro :D) scheduled beginning of July and then meeting with the MR Oz specialist doctor to determine how I really am looking (with lesions, inflamed or scarred). Are the disease management drugs working, did plasma work, what are next steps, what will recover, what will not. I am a little nervous for this meeting and just HOPE I hear some good news. Its about damn time hah.
One of my OT therapies is writing (and I have a fun pencil weight to help…its fashionable). Shoot me an email with your address and lets become penpals! It will help me in my rehab and generate friendship growth!
Please continue the support, it is what keeps me from not getting discouraged, as discouraging as this experience is.
The past 4 months, we keep saying “it could be worse” and then, it gets worse. So I have decided to no longer say that. Instead, I will say “it will get better!”. Because you can choose to have life get better. No matter what is thrown at you, you can choose to make a good situation out of it.
We’ve all heard it: When life throws you lemons, add some patron (or make lemonade for those under 21). :D
As always, you’re on my “think of daily list” (I have a generic “all those that read my tumblr line” :D). If you have anything in your life happen that has to do with roses, let me know FYI.
Hope you find something joyous in your life today. Thanks for reading!
Sometimes we’re strong, sometimes we’re weak, sometimes we’re hurt and it cuts deep We live this life, breath to breath, we’re all the same; we all bleed red
Tomorrow I have the fabulous opportunity to finally go home!!! I wish I was going home all fixed and better but I have improved some so I will take that. (:
The above lyrics I found extremely encouraging today. If this journey has taught me anything it is that everyone has a challenge they are going through. Everyone has a story. Everyone has a hill to climb.
The cool thing about it though is that we are all in this together. “We all bleed red”. We are all, at our roots, the same.
I have felt this, this “we’re all in this together” from all of you and your support. I get by with a little help from my friends ring a bell? Well its exactly the reason why I’m well enough to go home tomorrow.
So thank you. Thank you to my family, my friends, my boyfriend, strangers, random people reading this. Thank you.
When we’re strong, lets help the weak. When we’re weak, lets be humbled by letting the strong help us.
And overall, lets hope for a cure for MS!!! Ive received quite a few emails from MS sparklers (instead of suffers I’m saying sparklers because thats truly what they are :D) sharing their stories and offering words of encouragement from their experience.
How awesome would it be if our power together helped bring a cure to MS? I’d say that it would be freaking awesome.
Today I took an adventure to the gift shop at the hospital (and by adventure it meant wheeling through a small space full of breakable things. My bill is $0 for broken items today. Stay tuned for tomorrows adventure :D) to pick up the latest people magazine. The cover (below) enticed me to read what the Osbourne family had to say about MS. (The title is a bit dramatic if you ask for my opinion.)
I took some time and really read the article. My experience took two perspectives:
1. Awareness. The fact that a story of a person with MS made the cover of People is fabulous. The more awareness the better. Even though Im not the biggest fan of the Osbourne family, I’m proud of Jack for sharing his story so publicly in hope for a cure and to create awareness. I felt for him, just like I do for anyone that suffers from MS. It isnt a fair disease and you never know when it might hit.
Jack had some quotes that I’d like to share, mostly because they reflect how I feel:
"I never felt sorry for myself. But it was a bit of a buzz kill, that’s for sure."
"It’s just one of those things you take as it comes. It’s all about your outlook."
"I think when people hear that you have MS, they think ‘Oh, your life is over." But my life is far from over.”
I wish Jack the best of luck in his life with MS and hope he goes into remission soon with limited amounts of relapses. And I thank him for telling his story for MS awareness.
2. Unfair. The second part I felt was a sense of unfairness. I usually try to shy away from that word and feeling for I think it is best to live the life you have to the fullest instead of wishing for others; that gets you no where but either backwards or in a standstill. However, I cannot find another word to express how I feel.
What was hard about reading this article was I thought to myself, “People are going to read this and think that MS happens, you spend 3 days in the hospital, you get better and go into remission for 10 years, then it strikes again and you go through the cycle”. This is usually the case and its not fun. It still is an ugly disease, even during remission. I do not want to belittle what MS suffers have to go through in their day to day lives to live, remission or not.
My story is so not the normal MS story and that is what is hard and unfair.
The article states:
“MS usually begins with symptoms that come and go. It typically progresses over 15 - 20 years into a more debilitating form that leaves some in wheelchairs.”
Its been 4 months and yesterday I was fitted for a wheelchair. My MS must have had a few redbulls.
Yes, we hope and we pray and we send good vibes that the wheelchair is only temporary. That I go out in public with only my forearm crutches and maybe even graduate to a cane.
But the fact still remains, I have a severe, abnormal case of MS. I havent responded to steroids, I have had two lesions in 4 months, and the most common medicines I dont respond to.
Again I want to re-iterate that all that who have MS suffer. And there are those that have it worse than I do. This is just me, telling my story. This is my legal studies disclaimer bachelors degree coming through. (:
After reading the article I took some time to do normal things, to teach MS it cant take all of me. I watched a funny movie in bed, painted my nails and toes, ate goldfish and drank bubble water and texted my friends. I sparkled.
I am improving, slowly but surely. Therapy went extremely well today. My balance has improved quite substantially. I learned some new techniques to help with my speech that includes my ipad which is fun and I was able to paint my nails without too many mishaps.
We just continue to hope that the plasma exchange worked and that my next MRI shows no more lesions (this will be early July). We continue to hope for more awareness. We continue to hope for a cure. We continue to hope that I dont lose hope. (:
I did have a wonderful surprise today when mom brought me my favorite starbucks. How that brightens my day! Seeing her was nice too (dont worry mom, starbucks doesnt trump you).
I didnt choose MS. But it chose me. It sure as hell chose me hard. So you know what, as Ive said before, bring it.
Ive got the support of my family, friends, doctors, nurses, strangers, an army above. Let’s fight this.
I’m fighting against the fact that my body is fighting against my own body (autoimmune disease joke). The nerve of my body (another autoimmune MS joke). Im on a roll. (:
While doing therapy today I heard a song by the GooGooDolls called “Better Days”; these lyrics are perfect:
Because I don’t need boxes wrapped in strings And designer love and empty things Just a chance that maybe we’ll find better days
Except I do love designer love. (: That will be my reward for making it to the better days.
Hope for me. Hope for all those suffering from MS. Hope for a cure! We’re close…I can feel it.
Had last date with plasma exchange. It was a bittersweet break-up but we knew it was best to discontinue.
Dad was able to come and experience some of my therapy this morning. I have been walking well with my forearm crutches, today 350 feet. These will mostly be used for around the house and short visits. I was fitted for a wheelchair and this will be used for longer distances.
I’ve received quite a few emails of hope and encouragement and stories and I thank you; I will cherish them forever! I will also respond tomorrow when possibly I’m not so tired. (:
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!!