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.
As I shared in an earlier post, one of my best friends Kate was coming to visit.
She is from Boston but resides in Argentina (nbd). We met in undergrad and have been besties ever since.
During her trip we took a road trip down to DC to visit my previous employer for our Holiday party. It was such a great time. And, we were the last to leave. Granted, we were leaving with a group, but Kate and I had to laugh as she pushed me out in wheelie of the party room, being the last. Some things never changed.
We also spent a day out in the Virginia vineyards. I highly suggest attending Virginia winery land. Its beautiful and tasty. It was a great day!!
Kate stayed for a week and it was just lovely. It was sad to see her go but I know our next reunion will be just around the corner.
With true friends, its never goodbye. Its always see you later!!
Here are a few pictures from our trip:
Had lunch with this bestie.
Roadtrip to dc!!
Getting ready for the holiday party!
So thankful for her friendship!
Hope today is a fabulous day sparklers!!
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 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!