1. The illnesses I live with are: SLE Lupus, Sjogrens (add two little dots above the "o") Syndrome, Fibromyalgia and dysautonomia (Disorders of the autonomic nervous system).
2. I was diagnosed with it in the year: Summer of 2009. Just over a year ago!
3. But I had symptoms since: My freshman year in college (2006)
4. The biggest adjustment I’ve had to make is: Learning my limitations (And that I now have limitations), and having to think about every action and it's potential consequences before I do it.
5. Most people assume: I am healthy because they cannot see my illness... Although catch me on really bad day and I look like a cross between Cruella DeVille and Ursula (and I probably act that way too!)
6. The hardest part about mornings are: Waking up-->They are unpredictable and I never know what Lupus may bring.
7. My favorite medical TV show is: That's a given-House- Who Else would I call when all the other doctors are baffled by the symptoms I present- prior to my diagnosis our joke in my family was that we needed to contact house to get to the bottom of this!
8. A gadget I couldn’t live without is: I am a crackberry addict. Although I have only had one for a few months, I could not go a day, hell, an hour without it. It is my life.
9. The hardest part about nights are: They leave me far too much time to think... Especially when I cannot sleep.
10. Each day I take 22 pills & vitamins (not included). The newest of which is hot pink and purple-- and I was pumped! If you have to take handfuls of medication at least have some fun with it!
11. Regarding alternative treatments I: am not opposed. To each their own.
12. If I had to choose between an invisible illness or visible I would choose: That's an easy one... Neither.
13. Regarding working and career: I am a full time graduate student.
14. People would be surprised to know: I ran a marathon my senior year in high school (no worries folks this was pre-lupus days haha!) and have had 4 surgeries on my right knee- 2 ACL reconstructions and 2 scopes.
15. The hardest thing to accept about my new reality has been: It does not feel like reality at all. As my dad and I joke, "I'm living the dream--whose dream I'm not quite sure, but I'm still living it!"
16. Something I never thought I could do with my illness that I did was: Be open about it. I was terrified of the discrimination and judgement that would be cast upon me not because of my illness, but because of others ignorance and arrogance. Then I realized, the only way to help those ignorant people understand is to raise awareness and educate them.
17. The commercials about my illness: Are relatively new and sponsored by the Ad Council in a kickass campaign called "Could I have Lupus?" check it out--> Could I have lupus?
18. Something I really miss doing since I was diagnosed is: Pushing my body to it's limits. I am an extremist of sorts (hence the marathon), and love to challenge myself athletically, physically and mentally.
19. It was really hard to have to give up: My on-the-go lifestyle. I was a beach bum, surf-addict, distance runner and although my knee and other factors had made me alter my lifestyle prior to my diagnosis, My diagnosis stopped a lot of how I lived my life dead in it's tracks...Being told to avoid the sun was terribly difficult for me. Don't let the pale skin fool you, I love the sun, and even though my "tan" consisted more of a conglomeration of freckles, I would spend days outside, and being able to go out with my friends and live the life of a "healthy" 22 year old... and most of all I miss being carefree.
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Cherish every minute of it.
22. My illness has taught me: I am not invincible-- But I am stronger than I ever could have imagined, more courageous than I ever thought was possible, more determined to find a cure and raise awareness, and to not pass judgement on others because you never know what their eyes have seen, what their bodies have been through and what their life story is all about... and to never take a day for granted, "today is a gift-- That's why they call it the present..."
23. Want to know a secret? Yes I do! -- Just kidding-- Here's one I'll share with all of you: I hate that there are some things my Lupus has and will continue to stop me from doing. I do my best to alter and make adjustments but cannot stand that it has the power to control certain aspects of my life, this does not mean I am weak or that the Lupus has won, but it is inevitable that there are some things I simply cannot do, solely because of my disease. I hate when my illness is misconstrued as laziness, because if there is one thing I am not it is lazy.
One thing people say that gets under my skin is: "What is Lupus?" I do not mind at all that they are not aware and I am happy that they ask, what bothers me about this statement is it proves there is still not nearly enough awareness and research being done!
24. But I love it when people: Show me they care and stand by me through thick and thin. If you want to show me you truly care, do not shower me in gifts, do not take me on a fancy date (although I do love to be wined and dined...) but simply be here for me through the ups and the downs.
25. My favorite motto, scripture, quote that gets me through tough times is: I'm here to chew bubble gum and kick some ass! --"It's hard to get beat when you never give up"-Babe ruth & "The robbed that smiles... Steals from the thief..." Shakespeare
26. When someone is diagnosed I’d like to tell them: They are not alone.
27. Something that has surprised me about living with an illness is: It has taught me so much and I would not be the person I have become (That i am quite content being) without it. Also, Ironically enough, because of my Lupus, I have been afforded some wonderful opportunities and met some amazing people that I would not have met otherwise. It has given me a greater purpose of being.
28. The nicest thing someone did for me when I wasn’t feeling well was: Told me we are in this together. Simple as that. And sent a card. Cards mean so much when you are not well, they are so thoughtful and sometimes put such a smile on my face simply because it shows they were thinking of you.
29. I’m involved with Invisible Illness Week because: It is a step in increasing awareness and educating the public about invisible illnesses.
30. The fact that you read this list makes me feel: Happy and hopefully you gained some personal insight and learned something you did not previously know!
And that is my list of 30 things you may not know about my invisible illness in honor of our second day here of invisible illness awareness week! Now I'd like to share one more thing with you before we part ways! A new friend Ross, that I have met through the Lupus community, is doing big things for lupus awareness and I'd like to share his site and his story and encourage you to support his endeavors as he is increasing awareness tremendously for all of us! I asked Ross to right up a blurb ( I love that word- BLURB) for us to share his experience and what he is doing! So without further adieu a warm welcome to Ross from Run Fly Run!
RunFlyRun… Jetting for Charity
When I heard that airline Jet Blue was bringing back their All You Can Jet Pass, or AYCJ, for the second year, I was thrilled and started thinking about how I could take advantage of the opportunity in a unique way. Last year a good friend of mine participated in the program where one flat fee ticket gives you unlimited Jet Blue flights for a 30 day period. It turned into a huge social networking experience with meetups and tweetups all around the country. I wanted join the party this year… but with a purpose.
Before the AYCJ program, I had already signed up to run the New York Marathon this November and to fundraise benefitting the Life without Lupus foundation. My idea was to travel around the country and to train for the marathon in a bunch of different cities. I would be promoting Lupus awareness and seeking donations for the cause along the way.
From there I created www.RunFlyRun.com where I am blogging on where I’ve been and where I will be running next. I’ve already run in New York and Portland Oregon in the same week and am gearing up to head to DC and Philadelphia for a 1/2 marathon this weekend.
From a social media standpoint it’s been amazing learning experience becoming part of both the Lupus and “Jetter” communities at the same time. In Portland I met up with about ten fellow jetters to run the Pints to Pasta 10k. On the Lupus side I’m interacting with a lot of new friends that are struggling with this often overlooked and misunderstood disease.
I have a goal of $4,000 to raise overall… I’m only about $500 in, but have a lot more miles to run… and fly along the way. You can follow my updates at www.RunFlyRun.com and on twitter @RunFlyRun
Our friend is doing amazing things in the name of Lupus, and I highly recommend you follow his blog as it is one of my faves and really so interesting as he tells of all the places he has travelled and will be visiting! Now in honor of our second day here for invisible illness week-- If everyone that visits our blog could show Ross Our Run Fly Run guy support and leave him some love on his blog or on twitter- I think that would be a tremendous way to show him we love what he is doing! And of course in honor of Invisible illness week, for our second day, we are going to donate 20% of ALL sales from our CHRONICLYsILLy Designs to the LFA!! usually we are able to donate 10% of today (and yesterday) were giving 20%!!! And of course if you haven't already, sign up for our mailing list and be entered to win a CHRONICLYsILLy T-shirt and you will be automatically added to our list to receive our new monthly newsletter! Simply email Mailinglist@chroniclysilly.com! And here is our jolt of Java as I must go prepare for the Gala!
Jolt-of-Java: "Ask me not what I have, but who I am"-H. Heine
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