Im so over writing about MS things that I decided to go the therapeutic route and write “Things About Me, part 2”.
I feel somewhat better now. ♥
Im so over writing about MS things that I decided to go the therapeutic route and write “Things About Me, part 2”.
I feel somewhat better now. ♥
Today had my second round of plasma exchange.
More info on the sparkled life blog: http://www.thesparkledlife.org/2013/05/plasmapheresis-fancy-blood-thing.html
New blog update MS Sparklers!!
Much love, Eliz
PS: Want to help with get The Sparkled Life to 200 likes? Just a few more likes!!
My thoughts on at home care. And how much I miss my friends.
Found at The Sparkled Life. <3
New blow post up on The Sparkled Life…weekend and life updates…
Much love to all you MS sparklers!!!
Ended/turned the page of two chapters of my life today.
(The fact that goes with the feeling of “uhhh my life?!?!”)
Read more on The Sparkled Life website, http://www.thesparkledlife.org/2013/04/a-turning-of-page.html.
Outings, fallings, infusions and more!! <3
Updates on my life, MS relapse and ugliness of the past week. Oh and the good too.
Check it out at the new blog:
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
Today marks the 1 year anniversary of being diagnosed with Multiple Sclerosis.
It’s been, thus far, the longest, hardest, most painful yet most exciting year of my life. This is an affirmative.
I spent my 1 year day with my family, Starbucks, one of my best friends at one of our favorite restaurants for lunch, came home to a box of goldfish and Starbucks giftcards (thank you!), had a good cry and treated myself to a hot shower.
I havent had a “hot” shower in such a long time…the heat is bad for MS, this we know. My showers usually include a light warm water stream with a blast of cold at the end. The hot shower was quite a luxury today.
March 20th 2012 was a bad day. I had already lost feeling in my legs and I was very concerned. I decided that if I woke up the next morning and it was worse, I’d call the doctor.
March 21st was a Wednesday. Wednesdays were BD Meetings at our company. Since I was the BD Manager that meant arriving a little early, prepping the conference room and such.
That morning my alarm went off and I sat up to get out of bed. It was then that I realized it was worse. The loss of sensation was up to my abdomen. When I took a step to walk, I had to tell myself “move your leg”.
I had a morning full of meetings. I kept telling myself “get through them, efficiently, then call the doctor. You can do this.”
When my agenda finally caught to a breather, I called the doctor I had seen a few days earlier. I told her what was up and she said to go the ER.
So I went. As I’ve shared before, I sat in the parking lot of that hospital for about 30 minutes, just sitting. First, I was alone. I cant deny I wasnt scared. Second, I kept going over “what if this isnt just a virus? What if this is bad?”. Third, I didnt want to walk that far. (:
But I did. They got me right in, admitted and sent to a MRI. Worst MRI of my life. My legs were starting to contract and I couldnt hold still enough for them to get good pictures. It took forever and I remember there were some tears.
After the MRI, I returned to my room. I was asked a LOT of questions by various doctors for the next few hours. My head was spinning.
I thought they might let me go home. Shows how little hospital experience I had…admitted meant an overnight. My first hospital overnight.
It was 10:30pm and I was going to brush my teeth and wash my face prior to bed. When I came out, the nurse was there with a phone.
On the other end was the neurologist. He had looked over my MRI scans. He confirmed that I had multiple lesions (8-10) on my brain, neck and spine. We would run further tests but he was confident of the diagnosis.
I had Multiple Sclerosis.
As I hung up the phone, I was a little stunned. And very naive. So naive. We all were.
MS. We knew people with MS. They live just fine. They go on to have full careers, have families, live dreams.
These MS sparklers still suffer, I dont deny it.
But a year later, here I am. Stunned still that this is my life, so far from the MS life I had googled and confirmed I would have that night a year ago.
I’ve spent the past year “keeping my head up”, staying positive, living each day because “its gotta get better”.
And I’m stuck, because no matter what I do, what we do, what the doctors do, I’m still very sick. I hide it so well somedays. Today is not one of them. I’m tired of being sick. I’m tired of MS. I’m tired of doctors, of MRI’s, of needles, of medicine, of appointments, of not knowing how I’ll feel tomorrow. Im so tired. And we’re only through year 1.
With that said, I have much to be grateful for. As tired as I am, I can see the benefits that have come out of this year. And if I keep my eyes and heart focused on those benefits and blessings, than I can only imagine what the extra years will bring.
Hope. I dont really have any other choice. So I just keep repeating it and believing it. As hard as it gets. Hope.
Yes, I could spend every day crying over this experience. And I do cry at times. I believe it’s healthy to let tears fall; its an emotion.
But in the words of Adiana Lima with regards to crying (and limiting it), “my mascara is too expensive.”
So with that, year 1, you sucked. But you were good too.
Cheers to that. Cheers to moving forward. Cheers to friends, family and puppies. Goldfish, Starbucks and Champagne.
Cheers to you. THANK YOU. For helping me get through year one.
Much love, Eliz
PS: this song has been going through my head all day. And while it doesnt exactly apply, it does have some underlining connection. Rolling Stones-Wild Horses.
Today I attended my first meeting in quite some time.
It was via Google + meetings and the meeting topic was “Bike MS: City to Shore 2013 Planning Meeting”.
For those that may remember, we participated in Bike MS: City to Shore last year with Team Sparkle, raising over $12,000.
The planning team asked me a bit ago if they could use my required “Why I ride” quote from the registration for their 2013 promotion. Of course I answered yes.
And I’ve been so humbled because they’ve taken that quote to their facebook, to their email campaign, to their mailing campaign, etc. Quote and more. It’s been such an honor.
A few days ago the planning team asked if I could be so kind and say a few words at their opening Planning Meeting for this year’s Bike MS: City to Shore.
Which occurred this evening.
And it was quite an honor.
The “speech” I gave:
Thank you Nicole and thank you Bike MS: City to Shore team for having me speak here today and for allowing me to help create awareness for the disease that has so taken over my life….literally
A year ago I was gladly defined as a corporate girl, climbing the corporate ladder and fortunately, despite the economy, corporate world was good to me.
I had completed my MBA and was working as a Business Development Manager for a technology company. Every sacrifice I had made to get to that point made it so worthwhile; for I was witnessing my dreams coming true.
Then, a year ago, to the day, I realized there was a slight problem: I couldnt feel my legs. I woke up March 21st and I couldnt feel up to my abdomen. It was suggested by my doctor that I go to the hospital, led to believe it was most likely a virus.
So I went. Up to that point I was perfectly healthy and this was actually my first hospital admittance. After a long (gotta love it) MRI, it was concluded at 10:30pm that evening that I had Multiple Sclerosis. They had found 8-10 lesions on my brain, neck and spine.
As naive as we were about MS (at the time, I didnt even know how to spell sclerosis), we were optimistic. Fortunately this has stayed our constant theme.
After a steroid treatment, it was suggested I go back to Pittsburgh (where my family lives) to spend a few weeks. I was living in an apartment three stories high, alone and the suggestion to move back to my parents was a good idea and place for recovery.
But a couple weeks turned into a couple months. From March through May I went through 4 additional steroid treatments, many more MRI’s and stumped many doctors. I wasnt getting better, only worse.
But then one Friday I did feel better. I drove myself to Target, got a Starbucks, even went to a movie.
And then, I woke up the next day without the ability to talk, to walk or to be able to do fine motor skills. Just like that, overnight.
I spent 2 weeks in the hospital, then moving on for 4 weeks in rehab. Steroids were already counted out as they could provide no relief. I had 5 plasma exchanges and this provided me enough positive change that the doctors allowed me to go home.
It was during this time that we, my family, my friends, my community, realized MS was here to stay. In the words of my MS specialist “I just have an unlucky case of MS, lesions in unlucky spots”.
I’ve never been lucky so I didnt find this too discouraging. Rather, we kept up the optimism and kept on moving forward.
Though the doctors had done “all that they could” and I was on a disease management drug, and various other drugs, I was left with permanent disabilities. It was and is still today, challenging. I also had to leave my corporate world for the world of disability, a humbling experience.
Two positive things came out of this realization that MS was now my life: The Sparkled Life (my blog) and Bike MS.
The Sparkled Life began as an easy way to update many people on my status. One blog update vs. 30 emails…I’ll take it. But its grown. It’s been my ability to express my words when I couldnt speak as well as an opportunity to share MS Awareness. So many gifts have come from the sparkled life and I look forward to continuing its path.
As for Bike MS…it was also fortunate find. I am the eldest of 6 kids. My dad is an avid cyclist and thus, so are we. Prior to being diagnosed, I was biking 20 miles,5 times a week on my recumbent. It’s what we did, together or apart.
As we researched a little more about Bike MS, we discovered City to Shore. Upon finding it we decided right then and there we had no choice but to ride it.
My dad grew up on the Jersey shore, it’s where I was born, and lived for most of my childhood. We actually lived in Ocean City two blocks over from where the race ended.
So as I worked with outpatient PT and OT to help with my disabilities, Team Sparkle, our team, started to prep their legs and butts for the long two day ride. Team Sparkle was a team of the men in my life, joined because they knew they couldnt fix me. They couldnt heal me. They couldnt take my pain away. But they could bike for me. And so they did, without a complaint.
I had a moment one day in August, realizing despite all I had lost, I still had my ability to bike. We had two recumbent bicycles in our house I used often and it was what we used for PT exercises.
So hell, I decided to join Team Sparkle as well. We found a tricycle recumbent (since I have issues with balance) and we were ready.
Crossing the finish line at Bike MS: City to Shore I was overcome with emotions.
First, hardship: all these people were here because of me, because of a disease I had, a disease that leaves me most days in bed or in a wheelchair.
Second, humbleness: again, all these people were here because they believed in me. They believed that the daily fight I fight is worthy of a cause. And a long bike ride.
Third: hope: MS is a challenging disease. Many people do not understand the disease or what it is like to be diagnosed with it. Add on top of it that you’re 26 and already far down the road of a disabling MS case, it can be a hard burden to carry. But to witness all the people who biked, who volunteered, who planned the event, YOU provided me with enough HOPE to last all year.
As already expressed, MS has taken away a lot from me, leaving me with disabilities in their places. It causes fatigue to the extent that I’m happy if I’m out of bed for more than 6 hours. It took my corporate dreams and ladder and drowned it with many other of my dreams. Its even cost me relationships, for some people do not know how to cope with MS or disabilities.
But it hasnt taken my sparkle, it hasnt taken away who I am. And it wont.
Because, as my tag-line says, its a very simple answer as to why I Bike MS: to show, at the end of the day, who is, still, the boss.
I want to thank you, for allowing me to speak to you today but more importantly for your work with Bike MS: City to Shore. I’m just one of the 1000’s who you help provide hope for, a hope that keeps them, me, fighting and sparkling. Thank you!
I will always be thankful and honored for this opportunity. And how fitting that it occurred on the eve of my 1 year Anniversary of MS.
I come from a faith filled community. When first diagnosed, I was greeted with many “I’ll pray for your healing” sayings. When it was becoming apparent that I was not going to be healed from MS, I could sense the discouragement in people’s response. “Well, I’ve been praying….”.
Eventually I just asked people for prayers of support, hope and the ability to take this diagnosis and use it as a way to create MS awareness.
Well, God heard that prayer. Why He choose that prayer over the healing prayer I’ll never know.
As I mentioned, tomorrow is my one year anniversary with MS. Look where a year has brought me to with regards to creating MS Awareness.
With The Sparkled Life tumblr alone:
And then with this honor of partaking in the Bike MS promo, which speaks for itself.
I cant deny that there’s some reason behind it. As ugly as I get at the disease and what it has done to my life, I have to trust that it will be used for good, for MS Awareness.
So that one day, a girl with MS can wear heels and walk normal because there is medicine, there is a cure.
If I cannot, then wear yours proudly. For the future ones.
Much love, Eliz
(ps orange love necklace…perfect MS awareness piece! From ReduceReuseRenique aka friend Nicole)
I consider myself a good driver, well-balanced.
I stay within 5 mph of the speed limit and have only gotten one speeding ticket. (In my defense, this speeding ticket was in a “catch-you” speed limit spot).
I’ve had two accidents: 1 my fault and 1 not my fault. The one that was my fault was actually before I could even drive. I might’ve bumped/crunched a car with a lawn mower.
I give pedestrians the right of the way and I always slow down for cyclists.
My driving has stayed the same since diagnosed with MS. Actually, I’d say its improved. Im more patient, not in a rush and like bigger cars instead of my little sports packaged green love.
In addition, I have a legitimate reason to access the princessest of all princess parking…disability parking spots.
These spots are guaranteed for those with disabilities, those who have the blue and white disability pass. To apply, a doctor’s note is required and an application. A few weeks will pass and then low and behold, your pass arrives.
Due to what reasons you are claiming the need of the disability pass determines how long the expiration date lasts. My first one doesnt expire until 2017.
I keep it in a little leopard case and I cannot express how many times it has been useful. Walking is tiring and to be able to park the closest to the door allows me to have the energy to actually do things.
However, I have a confession to make. I’ve become a passive aggressive parker. When I see a car parked in a disability parking spot with no sign, I become very…confused.
I understand the rules of entitlement, the rules of “Im running late”, the rules of “Im old”. I cannot understand however how those trump the ability to park in a disability parking spot when not disabled.
This has occurred a lot in the past few months. Granted, its Pittsburgh. Its cold, no one wants to walk far in the snow/rain/sleet/wind.
But at least you can walk.
So whats left is me, who cant really walk, driving around to find a less than perfect spot. Yes, it might only be an extra 20 feet, but that 20 feet costs me more energy than I’d like to share.
I’d be completely happy to trade in my blue and white princess parking sign if it meant I could walk and park like a normal person.
Thats not the way life has turned out though.
So, in the direction of being that passive aggressive parker, I have created little cards. These cards are specifically designed and for those that take advantage of disability parking spots without the sticker.
Today was the first day I used one. I was gathering some supplies for my sister’s wedding shower and was thankful to find the last disability spot still open. There was a car in the first spot, happily parked, with no disability sign (I walked around the whole car to check prior). They also had a “Jazzercise” sticker on their car, publicly illustrating they work out. Good for them.
I put the card right over the sticker.
Yes, being passive aggressive is not an answer for everything. And these acts perhaps arent a good way to remain positive and encouraging on my outlook on life.
i’ll admit, I’ve become MS, disabled entitled. I expect certain things due to my misfortunes. I do however understand that these are above and beyond the norm moves so always try to remain gracious.
I allow myself these entitlements because I’ve lost so much. It doesnt even out the spectrum, but it helps. It helps health wise, and spirit wise. And as I said above, I would turn it all in to go back to where I was. But that’s not my life story anymore. This is.
In the meantime, I hope you think twice before taking a disability spot without a blue and white sticker. Otherwise, you might be greeted with my passive aggressive card on your windshield. With love of course.
Thank you to those who walk the extra 20 feet for those who cant!!
Much love, Eliz
I was so caught up in my love letters and brains vs beauty that I forgot to document an important moment.
As with all beginnings of months for 2013, an infusion (third round), found me once again at the downtown hospital.
I will say, the office does a great job on making it as comfortable and as “easy” as possible. No lines, no waiting. Very quite and efficient. Just the way I like business, so thus medicine as well.
(due to the reflection of my bright pink zip up, the drug looks pink. it is not. though that would be cool)
As stated prior, we will not know the true effects of tysabri for another few months or so. But I have noticed a significant development in the positive light with regards to my speech.
It comes and goes, much like the sun here in Pittsburgh. But I dare say this is the best it’s been since late May.
Now if only I could feel my feet again.
We have started some new medications as well to help with symptoms; one including the infamous fatigue.
Today was my first official day on said medicine and I will say, I accomplished quite a bit. And then I crashed. And realized I have more gray hairs than the last time I looked.
March is not only MS awareness month, my twin brothers birthday and St. Patricks Day but also completed with a lot of important swim meets for this household. Three of my brothers swim, one highschool, twins middle school, and they are doing lovely. I am so proud! I look forward to the years ahead of watching them grow in the sport.
So, infusion 3 complete. Does it hurt? No. The main effects are fatigue, headache, nauseous. Then there are the serious side effects which we just wont discuss. But overall, it beats the three times a week injections.
To fellow sparklers (taken from Alfred, Lord Tennyson’s poem Ulysses, featured in the recent 007 Skyfall movie- highly recommend)
Though much is taken, much abides; and thoughWe are not now that strength which in old daysMoved earth and heaven; that which we are, we are;One equal temper of heroic hearts,Made weak by time and fate, but strong in willTo strive, to seek, to find, and not to yield.
(Curtis Kulig spreading his love tag)
Ive been thinking a lot about love lately. What it means, definitions, etc. Ive been fortunate to make observations of love, especially since I am blessed to be surrounded by very loving relationships.
Ive also had some interesting reads with regards to love. Which has only made the subject more on my mind.
First, the book “The World’s Greatest Love Letters” complied by Michael Kelahan. It was an impulse buy at Borders prior to heading up to Big Bear last week.
See, I usually am not into the romantic side of love. Romantic comedies, yes. Romantic vampires, sure. But romantic grand gestures of “oh my goodness, he touched my hand! We will be together forever and ever!” are not necessary something I lean towards. I dont believe in destiny or soul mates. I believe you fall into love and from there it is a daily choice to stay in love.
However, the book captivated me and I thought what inspiration for writing (I’ve been in a writers block…Im blaming my medication) than that of love letters. Love letters are writings of the naked soul, or so Michael Kelahan claims. And I’ve been quite impressed. They just dont write like they use to.
These letters, they do bare the writers soul. Who knows, perhaps the writers are writing pure bs. But I cant help but believe in the true intentions of the writer and what they put down on page. Especially when I google the lives of the writer and the one who is on the receiving line; many of these famous love letters did not end with happy love stories.
Yet they were written and their love was proclaimed. And now, for all to see. And read. Embarrassing? Perhaps. But to share a story of the soul should never be something to be embarrassed of, for it is real truth. So my comment earlier about them being BS, I should take back. Because If these men (and women) were willing to write such things and let it be known, then it must have been real.
In addition to my love letter reading, I stumbled upon an article written by a lady who finishes her essay with “A.L.Kennedy”. She is a 40 something woman from Scotland, a lady who very early on decided that brains were her go to and exempted herself from the pursuit of prettiness and the thought that it offered its own rewards.
She began a life of study, a life of books and writing and intelligent conversations. But she recognized the “other side”, that of prettiness.
“Once I started school, I encountered attractive girls. From their first entrance, they glistened and giggled and seemed visible in a way….which seemed to make their lives easier. When they answered a question correctly, they were correct. When they got one wrong, their wrongness was somehow taken to be cute and forgivable. I observed them, pondered….then studied even harder, to make up.”
For girls, there is a love spectrum. One side, beauty. The other side, brains.
Due to many resources, a person can really work on finding themselves on either side of the spectrum. Make-up, education…all resources.
Not one side is better than the other. Most girls go through different stages on the spectrum throughout their lives. In high-school, it usually sways more towards the beauty. Then eventually, once career season hits, a girl realizes that brains might be a good advantage.
By the time a modern girl is 25, she is hoping for two things: a happy marriage and a happy career.
So she will spend time and resources to find a middle ground, a place in the middle of the spectrum of both beauty and brains. And wait for Prince Charming, for love letters.
I have always been blessed with a good attitude when I looked into the mirror. I knew my looks werent perfect, my body not model-esc. But I knew how to work what I had. I started down the world of my fashion and make-up, hair styles and what worked best. I was finally coming to a place where I was the killer word: confident. This is a key in the beauty part of the spectrum.
I also would pride myself on having some brains. Even if some of the brains were more so connected to “how to work the system”, I considered my tactics smart and took pride in my work. I was a girl who was not ashamed to start discussing politics or philosophy or religion when first meeting a person. I was not concerned with walking into a boardroom full and producing a presentation on any subject. Maybe some of this was grown/due to my political roots starting before I could even drive but again it came down to the killer word: confidence.
So there I was, confident in my beauty, confident in my brains. I had love and was loved and had a job that was reserved for those who had more years experience than I. Was I in the middle of the spectrum? Had I found my resting spot?
Instead I found a hospital room with a doctor who I could barely understand tell me that my immune system is eating away at my nervous system and I am sick. Oh and no feeling in my legs. #awesome
Granted, one can argue, “MS is no excuse to change where one is on the love spectrum”.
I have to slightly disagree.
For while my looks havent changed, they’ve become more complicated. I’ve added a third leg, my fatigue makes even taking a shower a hurdle. I cant wear those beautiful heels that add height and the clicks that only add beauty boosts. If my excursions find themselves longer than a few football fields, I find myself in a wheelchair. People stare and when they do I wonder if its at my beauty or due to the complications. And if a poll where to be taken, Im pretty positive the majority would be on the complications side.
Then there are the brains. Well for starters, lesions are in my brain, eating away at the nerves that send signals correctly. So my brain doesnt work properly to start with. I now begin with a disadvantage. And when I do find myself willing to express what is on my mind, I sometimes cannot even get the words out. A friend once asked me if I wanted a shirt that said “I actually have a MBA and probably could argue you on any subject for hours whether Im right or wrong”. A reminder to the people who stare that guess what, I’ve still got the smarts.
Has MS stripped me of my beauty and brains? Where do I lie on the love spectrum now, with all these complications? Am I even on the spectrum?
Ive had many conversations with friends lately on love and on finding a lover. On how it would be nice actually if someone just touched our hands and decided yep you’re it, lets get married and live happily ever after.
Do I get the pleasure of that? I have limited offerings now. However, Im still me. I still have the same spunk and sparkle and looks and brains, sarcasm, ability to get my way in most situations…just limited and more complicated.
The killer word of love though, as stated already: confidence. Add to it my life anthem: hope.
Confidence and hope. Beauty and Brains. Love.
With these words, I have to conclude that one day I will see myself in some man’s eyes, a man in love. With me. With me and MS. Because apparently, no matter how hard I’ve tried to “shake it”, we’re a complete package, third leg and all.
The author I mentioned prior, Ms. Kennedy, says she rapidly choose a profession that would make her willingly invisible: she became a writer. And for 20 years she stumbled through the love spectrum of beauty and brains, all while remaining to her profession of invisible writing. Then one day, she met a man. “I fell in love. Thats worth a laugh. Or at least a smile.“ And this man finds that she fits perfectly in his life and due to this love, she has gained that killer word: confidence. And where she fits on the spectrum of beauty and brains doesnt matter for she has found love.
Some people need a man to help them find that confidence. Some find it in fashion, make-up, books; again, going back to what resources one uses to define where they fit on the love spectrum.
But perhaps confidence is something that is in us all along. Perhaps its what demands the desire to show our naked soul, to write a love letter in the purest form; and through this, we only build our confidence, regardless of how the letter is received. And no one, no thing, can take that away, those words, those feelings, that love.
In closing, I suppose my summary would be: dont spend more time finding your place on the love spectrum, a place between beauty and brains, that you miss out on expressing real love and finding your true self. Find your confidence.
(Im preaching to the choir; this is on my to do list: find your confidence again Miss Eliz).
Give it your best shot. Whether you are already in love or whether you are still searching for it. Keep your head up. Fight for it. Be confident in it. And know that loving yourself for who you are is just as important, if not more, than receiving love from another.
Except from God. Because His love is pretty awesome and guess what, always there.
I’d like to end with a piece of a love letter. It’s a love letter that is not followed by a happy love ending. But I’ve always found this relationship fascinating and thus, the letters, beautiful.
Josephine to Her Ex-Husband, Napoleon Bonaparte (1810)
A thousand, thousand thanks for not having forgotten me…Yours (letter) has been true balm for me. Be happy, be as much so as you deserve; it is my whole heart which speaks to you. You have also just given me my share of happiness, and a share which I value the most, for in my estimation nothing can equal a proof that you still remember me.
Adieu, dear. I again thank you as affectionately as I shall always love you.
Much love fellow sparklers, with all your beauty and brains!!
With confidence growing, Eliz
And its cold. I miss the 70-80 humidity free, sunny, ocean view weather. As well as the lovely community out there.
Though it was for a sad reason my trip was extended, it was very nice to spend quality time with some great people.
In the middle of last week, we took a little road trip up the mountains to Big Bear Lake, spending a few days in a beautiful cabin. The weather was gorgeous and we spent a while out by the lake. I even climbed down some rocks with the third leg. #proudmoment
(oh yes…this so happened)
The few days were just further proof that a little nature, less cell phone and some wine can really be therapeutic.
It’s lovely to be home and back in my pink room with my puppies and family. But it’s also back to reality. Reality of infusions, doctor visits, new medications, etc.
Its been a hard past few weeks. I keep reminiscing to a year ago. Looking back now, yes, I can see some signs of the disease starting to arise.
I was becoming more and more tired as the days went by. Any activity seemed like a strenuous adventure.
I figured it was just the end of the winter blues. Little did I know that a year later this would be the life I’d be living.
I actually came across a picture of my last official long regular bicycle ride from almost exactly a year ago. We had ridden out to the airport and back. On our way back we stopped at a restaurant for dinner and due to this, ended up riding the last 6 miles in darkness. I remembered now that if I had my leg in a certain position, it would shake/have tremors. An early sign of ataxia perhaps. Thought back then: exhaustion.
“They” say the first year is the hardest. However, I’m not sure how true that will be for the sparkled life. The past year has been an adrenal rush of discoveries and questions and hospitals.
Now that its all settled down, the second year looks to be filled with more realization of what this disease means for me and my life. And realizations are hard. Or so I’m discovering.
It also doesnt help that I still havent gone into remission and I have a little lesion growing on the left side of my cerebellum (news provided right before leaving for San Diego). However, my infusions do seem to be providing some help, especially with my speech recovery, which is a hopeful sign.
March is MS Awareness Month. It is also my 1 year anniversary month. We are having a party. (:
I ask you in joining me in helping with MS Sparkle Awareness. You never know how close we may be to a cure!!
I also ask you to remember this lesson: dont take anything for granted. You never know what tomorrow will bring. It could change your life. Be prepared by living with no regrets, leading with love and appreciating every gift provided.
Much love, Eliz