#strongerthanms #ms #multiplesclerosis #mswarrior #opticneuritis #bokehvision #positivitywins #chronicillness #chronicorange
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@chronicorange
#strongerthanms #ms #multiplesclerosis #mswarrior #opticneuritis #bokehvision #positivitywins #chronicillness #chronicorange
Always. #ms #strongerthanms #multiplesclerosis #chronic #fatigue #spoontheory #chronicorange
Equal parts dread and gratitude. Every other day these (long) needles help stop an unrelenting disease. As much as I hate them - and the massive welts they inflict on my body - I have learned to be grateful for their role in my life. They remind me that I can fight an incurable disease, they remind me that pain is temporary, they remind me that I am stronger than I often think I am, they remind me what matters in life. What matters is real life moments: a hug, a snuggle, hearing a kind word with your own ears, warm sun on your skin, watching a sunset, befriending a stranger and exploring new places. We all need something that grounds us and keeps us positive in a world gone crazy. This is mine. What is yours? #myreality #positivityrules #moretolife #getrealbereal #photojournal #strongerthanms #multiplesclerosis #ms #extavia #follow #l4l #chronicillness #chronicorange #fightfightfight #positivevibes #positive #happinessadvantage
Keep moving.
MS is ...
Chronic Orange was honored to be a NorCal Top 100 Fundraiser for WalkMS 2015. We were asked to send in video shorts finishing the sentence âMS isâŠâ Here is the video they shared at our Top Fundraiser dinner.
http://video214.com/play/NY8u8IjnwPheJlcEsspilA/s/dark
How would you finish this sentence?
Traveling with my frenemy
I refuse to let MS take my livelihood. Sure, I may allow it to keep me down for an afternoon or a day, but in general, I choose to follow my passions despite my recent diagnosis.
One of those passions is travel. My husband and I own a home in Italy and we visit two times a year. In fact, it was directly after returning from a trip to Italy that I had my diagnosing âepisodeâ.
Naturally, the first time traveling with MS was scary. Will I be okay? Will I be able to manage the flight? Will I be able to travel with my medication? What if I have a relapse? What if, what if, what if?
âSTOPâ, I tell myself. The âwhat ifâ question is a common question living with a chronic disease. It is also a paralyzing question. One that is best ignored. Giving too much energy to answering what question gives my MS frenemy power.Â
I remind myself that I am stronger than my MS, that there are people all over the world with MS and well, I can do anything I put my mind to.
Today, I am writing from Italy. My third trip since my diagnosis. Sure, I travel with a new perspective, but I leave the âwhat ifsâ at home. I have new items on my packing list (extavia, travel sharps containers, cooling packs, etc), have learned the ins and outs of hand-checking my medication through TSA security and have mastered fending off the MS hug on a long flight. Not to test fate, but, all is fine. In fact, I feel 100 times better in Italy than I do at home in California.
So with the âwhat ifsâ banished and locked away, I have only to ask, âwhat will we do today, Frenemy?â To which the answer is, âToday, MS Frenemy, we will walk 3 miles through the vineyards and olive groves, we will be mesmerized by the swallows soaring and diving between stone cottages, we will listen to the Italian children laugh as they play in the piazza, we will watch generations of families walk arm-in-arm during the passagiata, we will sit under the warm Tuscan sun and have a gelato...MS frenemy, we will do it all. I have the power to show you my Italy. Andiamo.â
The Hourglass
And The Hourglass TurnsâŠ
From the moment we are old enough to understand that life is fleeting, in the back of our minds we know that day will come. That day with the doctor tells us âitâs incurableâ. My day was December 2nd, 2013. That day, my hourglass flipped over and started running the opposite direction. My past and future defined.
After a few years of 'not feeling normalâ followed by 4 weeks of uncontrollable, all consuming muscle contractions through my whole body (that were exhausting by the way), I was diagnosed with Multiple Sclerosis.
In many ways I was relieved and oddly comforted in having an actual term with which to label my mystery ailments. I mean, it wasnât the massive brain tumor I thought, it wasnât the big scary C word and it wasnât something that would give me a definitive expiration date. I greeted the news with relief and a optimistic 'it is what it is, but I can live with thatâ attitude. Nevertheless, itâs a very serious disease. One with no cure. One that is very solitary. One that has the potential to be extremely debilitating. One that you fight alone because there is no common thread. One lacking a single protocol. No one - even those with MS - exhibits the disease the same way.
Having lived with MS for over a year now, I can say that since my diagnosis, I donât even know what to expect from one day to the next. This is the only true known. What I also know is, my hourglass has been turned.
The hourglass concretely represents the present as being between the past and the future. Not only does it measure time, an hourglass symbolically depicts that human existence is fleeting, and that the 'sands of time' will run out for every human life. For whatever reason, upon diagnosis, the hourglass stuck firmly in my mind.
Like an hourglass, my 'presentâ - my emotions, my physical abilities and my outlook - shifts just like sand. Like an hourglass, my 'pastâ - my career, my skills and hobbies - have been turned ass-on-end (pardon the phrase, but itâs true) only to begin a unknown 'futureâ that is, well, limited by the sands of time.
Lucky for me, my 'hourglassâ is full. It is full of wonderful people whom I love dearly, whether they are in my life now or in the past. They hold me up when the MS makes me unstable and wobbly. My hourglass is full of experience, both joyous and challenging, that provides a compass when the MS makes me disoriented. It is full of optimism and laughter that greets my new âMS frenemyâ (my witty name I have given the enemy living in my brain that I have come to befriend) every morning with âLetâs see what you got for me today? Whatever it is, I can handle it, bring it on!â. My hourglass is full, even if my healthy days may be running out.
With Chronic Orange, my blog, launched on World MS Day, I hope to share with you my experiences with my frenemy called MS. Selfishly, it will be cathartic, but more than being self-serving, I hope to reach out to others with MS to share experiences and to 'fill their hourglassâ as well. Above all else, for everyone reading, I hope to be inspiring.
No matter which end faces up on your hourglassâŠyour sand is moving, today is here, live it!
May 27, 2015 is WORLD MS DAY. Please take a moment to support an end to MS by donating to my Walk MS page. Your donation directly funds research and programs. Both which I have come to rely on. You can donate here --->Â http://bit.ly/kristinewalkms