Today I leave for the beautiful state of California.
I actually spent a few years growing up in California, the northern area. Beautiful.
This trip however is to go and spend some time with a good old best friend, Bethany.
Beth was one of the first people I met in college way back in the day. She was an upper classman and took me under her wing to show me the ropes of the college.
After a few more years of friendship we became roommates in a cute little house we made a home. We were both working and doing our Masters at the same time and it was quite a trip. But we survived (even when we added a very crazy…like legit crazy…third roommate for two months) and became as close as sisters.
We’ve had our ups and downs. But one thing has always remained in our friendship: when we need each other, all it takes is a phone call and the other one is there.
We’ve both been tested a lot in our short lives. Tested by friendships, tested by relationships, tested by jobs, tested by sickness, tested by loss of a loved ones.
I know we will always be there for each other. And I am thankful to have such a friend as her.
Please take time today to read Beth’s story on life and love: http://cherylwilliamsjourney.blogspot.com/.
Please also send some prayers, love, good vibes, to Beth, her mom Cheryl who is fighting brain cancer and their family.
Here’s to my first MS flight, to good friendships and to love…forever and always.
PS: You can always follow my daily happenings on instagram (I take a lot of pictures) by searching #thesparkledlife.
for those that know me, i like to laugh.
sometimes i laugh at things i shouldnt (like people falling and getting hurt on America’s funniest home videos), sometimes I laugh at things that arent funny to anyone else, sometimes I laugh because other people are laughing and then re-laugh 5 minutes later when i actually get the joke.
moral of my life: i like to laugh.
its part of the sparkle. to be able to laugh in the spirit of a trial is, by a side definition, to sparkle.
someone recently expressed their concern and their sincere sorriness for my situation.
i expressed no need.
God’s doing me a favor by giving me my purgatory here on earth because they’ve got Starbucks here.
The past week or so have had some challenging moments.
My so called “shingles” I was diagnosed with months ago is actually not shingles. The extreme pain remains and no diagnosis has yet to be made.
Unpacking my old life provides many memories of what I walked out on. The littlest things get you, like finding your old planner that stopped the week of March 20th.
Health insurance and disability tracks are, well, quite challenging. Not something a girl at the age of 25 wants to even think about, let alone be having to do.
Every day brings choices and decisions that I never would have thought I would be facing.
But here I am. Facing them.
I am improving. Day by day, little by little. It does go in waves, as Ive been told MS does. 3 days good, 1 day off, 2 days good, and so on.
Today while at the doctors, when asked to get on the scale, I had a hard time lifting my leg. Now, no woman loves to get on a scale. But my hesitation was because I had forgotten to tell my leg “step up please”. Moments like that make MS a reality.
I had a low moment today. My pain has been challenging and Im an answer girl. When answers cannot be found, I get rather discouraged.
So after a good cry and some motherly love, I went and got myself a pedicure, felt the love of my family, took a nap and got ready for Monday date night with my two closest friends.
And we laughed. At jokes, at ourselves, at the random dancing cleaning people at Chipotle and at 27 reasons why kids are actually the worst.
Yes, life is hard. Yes, there will be days that will make me ask God “why in the heck did you give this to me?“
But what can I say. He did. This is my life. And I will just keep learning how to adapt to the changes, the bumps, the pain, the heartache, the joys and the hope. I will keep laughing. I will keep sparkling.
Should I mention that I ended the day with a Starbucks? (:
It has been a while since I’ve posted an update.
Mostly this is due to one reason: fatigue. The lovely curse of Multiple Sclerosis.
most days this is my agenda:
Of course, there is usually some sparkle intertwined with laughter. But it has been increasingly difficult to function with fatigue ruling your life.
We are hoping that this becomes better with time.
I took a trip to my alma mater this past weekend to spend time with two of my best friends, Kimberly and Zachary.
There was a flood. Though this picture is blurry, I feel it fully encompasses the flooding picture.
Oh and I made it down these steps with my arm crutches. Bad ass.
It was a lovely visit. It made me truly happy to have true friendships.
A few evenings ago I posted a quote from Voltaire:
The art of medicine consists in amusing the patient while nature cures the disease. - Voltaire
Well, today, I was pleasantly and gratefully amused by support and packages!!
(Side note: I read a facebook status the other day that stated that this person only belongs to Netflix so they receive something other than bills in the mail. There is just something magical, at least to me, to receiving “present mail”. Again, if you’d to be a “pen-pal”, email me your address!! You have no idea what a joy I get in receiving a letter, a package, a postcard in the mail.)
Back to my amusement.
There is a family called The Brown Family. Brittany Brown and I were good friends in college and have continued our friendship throughout the years. She was actually visiting the week my symptoms started and I ended up in the hospital. She was in the room when the doctor confirmed the diagnosis and held my hand after why I processed the results.
Today, the Brown family greatly amused me by sending me a package of lots of things I love. Earrings (that sparkle!!), note cards, (for pen-paling!), encouragement pieces, nail supplies and cards of hope and love. Thank you Brown family for helping put some sparkle in my day!
I also received quite a few letters in the mail, each bringing a lovely smile to my face. And my grandmother (you have to love grandmas) sent me some starbucks giftcards…my favorite. She knows and loves me too well.
As part of my OT therapy today, I decided to do a craft I had discovered in pinterest (to follow on pinterest, http://pinterest.com/isabellam434/.). It turned out quite nicely!
What I did was I used an old cork board and created “pockets” with card stock. The OT part was the cutting, measuring, folding and taping. It was quite a progress.
But now, I get to display all the “amusement” sent to me thus far in this journey. It reminds me that though life is hard right now (as in, I have a really hard time doing just an easy craft), I have a lot of people who love me, care for me and have my back.
So thank you. To each and every one of you who sent a card!!!
As for where my future journey continues, mom (how I am thankful for this woman) worked today to schedule my 5th (I believe…lost track?!) MRI and doctor appointment with the special MS doctor. This will determine how the disease is doing, how I am healing, what will be more permanent, what we can continue to do therapy on, etc. It will also confirm what medications are working and what are not. This is scheduled for the middle of July.
In the meantime, my job is to take it easy. To rest. To swim/PT. To practice OT. To practice talking. To take my time. To learn how to relive life. To sparkle. To hope.
Heres to a sparkly day tomorrow!
There would be times in the hospital where I would be just too tired to try to talk; this happened usually at night.
So I discovered the power of “the thumbs up”.
“How am I doing? Hows my pain? Did that injection hurt? Are you ready for bed? Do you have an adorable puppy?”
insert thumbs up
The past few days have been challenging, today especially. Its discouraging, after all thats been done, to not see huge, positive, responses in my symptoms. You have those challenging days though.
I keep having to reread what I write to encourage me to keep moving on and to keep positive thinking. Basically, have to take my own medicine. Shoot. I knew I shouldnt have sparkled too much. (:
Today I decided to conquer my closet. Since my sister and I moved out, my mom moved most of our things we didnt take into “the closet”. Who knew what awaited me as I started to clean.
I considered it therapy too. I have a hard time reaching and moving things with my arms. So this was good, efficient, practice!
I discovered many treasures buried in this small closet. I found the letter my boyfriend wrote the night we met, a letter my best friend wrote two years ago that still describes our friendship, lots of letters from parents of students I was an Admissions Counselor of, a stash of old pictures my sister was hording (there may have been a reason for some of them…dont worry Court, I wont post :D), and basically every letter/picture I received during my college years.
It reminded me of how loved I was pre MS. How I have had a really good run pre MS. Sure, there were hardships. But it really was a nice ride.
And now, I have a stash of cards to let me know how loved I am post/during MS. And I get to have a really good run post MS. Its going to have hardships. But at the end of the day, we will make sure it is a nice ride.
So how am I doing?
there are some friends in your life that are there to help make lemon-aid when life hands you lemons. this is the story of Kasey and I’s friendship. Just the other night, as I was appreciating her friendship, I received a video announcement of her engagement. A joy!!
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.
And hope for a cure for MS. (:
Feeling oh so loved on a really hard day!!
To send a little note (to me or randomly to a neighbor saying hi), visit: https://ecards.upmc.com/default.asp
Thank you everyone. It really put the biggest smile on my face! Adding you all to my “think of daily” list.
(Taken with Instagram)
“To experience this moment, or any moment, means to engage fully. Meeting a stranger can be totally fleeting and meaningless, for example, unless you enter the individuals world by finding out at least one thing that is meaningful to his or her life and exchange at least one genuine feeling.”
Deepak Chopra - Mind and Body, Miracles, and the Now.