Sunday, November 28, 2010
Saturday, November 20, 2010
“Kim, You look great!” – A comment from a fellow classmate one night as I entered my classroom, after being absent the class period before, I disregarded the comment for the time being, placed my bag down, and began guzzling my coffee, desperately searching for anything that might be able to keep me up for the next 4 hours of graduate classes that I will endure… and then in the middle of guzzling my last few drops of my latte with a double shot of espresso- I am suddenly aware of the comment made just a few moments ago.. did she say-“Kim, you look great!?”
This innocent and seemingly harmless comment, that I’ve heard time and time again, for what ever reason- Sent off a trigger in my head, as it has each and every time I have heard this comment over the past few years- which usually sends me into and induces a rant inside my head that usually plays out along these lines… “I look great?! Me? I- Kimberly Lehanka Look great too you?! You’ve got to be f*cking kidding me- If you only knew what I have endured in the past months, and how even as we stand here right now, in this very moment my joints and body are writhing in pain, my cheeks are burning from under the skin ( a constant remember of my lupus- worn across my face as if it’s leaving its mark…) and feeling a bit light headed as my Dysautonomia kicks my heart rate into overdrive and sends my blood pressure plummeting…and oh yeah and did you happen to miss that I’ve lost my hair? Or have you chosen to simply overlook that slight difference in appearance since the last time we spoke, and think shaving my hair (or what was left of it)- and rocking a ball cap was a mere fashion statement…” And then I inhale….
A deep breathe… and remember, they mean no harm… They are simply complimenting how “great” you look (and in their defense- even with my balding and bare head- I don’t look sick- but rather fabulous if I do say so myself!) …but as we all know looks can be deceiving… and even I need to remind myself of this sometimes…
Now, as I’ve had my rant and thrown my internalized tantrum, I find myself much more aware of everyone else that surrounds me… My classmates… “Her boots are made by Vera Wang? She must come from money… He’s wearing a suit- he must be important- maybe a business man?” And then I realize what I am doing and I begin to think…If I can be so sick and unwell due to my “invisible illness,” if you will, and look so healthy (and have also mastered emitting a façade that can fool even my own parents- Yes, I’ve got it down to a science folks…) I wonder what my fellow classmates are dealing with as well? … and then, it hit me… I am a hypocrite. That’s right you heard me- HYPOCRITE! Yours truly…. Is just as guilty of passing judgment on others just as quickly and thoughtlessly as they have done onto me time and time again. This was a big “AH-HA” moment for me and a moment in which I gained so much personal insight and a deeper understanding of myself (obviously so much so that I felt the need to share it here with all of you with hopes that it perhaps opens your eyes a bit more, or allows you to gain a different perspective as well…).
And here… is my miraculously simple- AH-HA! Moment: We judge what we see…There it is, simple as can be…because what we see is concrete, simple and allows us to make a quick judgment on that individual… and we all do it… each and every one of us place judgment on others based on what we “see.”
When a person looks at me, a first glance, I appear to be a healthy, happy and well 22 year old female, a NORMAL young adult, if you will… when in reality- I am a chronically ill young woman struggling to cope with the side effects and complications of a disease that most people have never even heard of… struggling is putting it lightly folks…This is my burden that I carry, day in and day out, and while I am not happy to have this burden placed upon my shoulders, I do the best with what I have been given and am grateful and thankful for all of my copious blessings I have been afforded… But… you would never know this simply by judging me on a quick glance and formulating an opinion of me…
Now, as I look around the room again, scanning with the same set of eyes as before, yet seeing each and every person completely differently… Wondering what burdens and hardships each one of them have been faced with or are coping with, what their eyes have seen… not judging them solely on what I “see”… I snap out of my daze, just as our professor is instructing us to open to page 221 in our Applied Behavior Analysis Textbook, and as I fumble through the pages, a picture of a library catches my attention, and the caption beneath the picture reads, “Don’t judge a book by it’s cover-The world is a library, and each person- a book, with their own story to tell… some may have fancy covers, while others appear simple, but each has a story inside that is unique, and until you open that book, you never know just what to expect.”
Wednesday, November 17, 2010
Good evening, I am blogging to you on study break as my ABA course's exam has had me preoccupied. However, there is ALWAYS time for blogging and boy oh boy do I have a wonderful Lupie story for you! It happened this past weekend, on what seemed what would be a routine run to the drug store to find a probiotic , specifically, Digestive Advantage Formula C, turned into a seemingly impossible excursion with my Poppa bear! Therefore- I'm heading to my blog to see if ANYONE knows where this tricky little bastard is hiding- because I can promise you it is not in any CVS, Rite Aid, Walmart, Target or Walgreens in the Tri-state area! How did this little Lupie adventure begin? Simple, here is how it went down...
Your GI specialist hands you a sample and tells you it can be bought in any drug store/retailer- Upon hearing this, I assume (and apparently made and ASS out of U and ME! by doing so...) the product will be relatively easy to find- example: my rheumatologist said my vitamin D was a little low- and that I may want to consider taking a simple calcium/vitamin D supplement to aid my body agianst it falling lower- I aked for the correct dosage- went to the store and found the bottle-O-pills to add to my already impressive collection of daily routine pills... But I cannot seem to find this "Digestive advantage Formula C" ANYWHERE! -And while I enjoy my quality father-daughter time that I got to spend with my pops running from one Rite aid to the next to CVS to Walmart and all the stores around and inbtween- by the time our journey was coming to close (not by choce but because the stores were closing!) I was using the loner canes at CVS to hobble around the store (isn't that why they have them in those stores- well i mean i guess you COULD buy them but I'm too stubborn for such things even though the stylish leopard print one did tempt me for a moment) our journey was over and I still without my probiotic medication and left with a tummy that has been tortured by 4 rounds of antibiotics over the last 2 months. So if you have any ideas or suggestions as to where this Stealth and seemingly non-existent medicine may be available- please leave a lovely little comment and share your information! On that note- this study break is over and it's time for me to dominate in Wheel of Fortune (me and the all the other 70 something year olds tuning in to their "nightly" programming!)
Jolt-of-Java: “I have no regrets in life. I think everything happens to you for a reason. The hard times that you go through build character, making you a much stronger person."- Rita Mero
Tuesday, November 16, 2010
LRI Highly Encouraged by FDA Advisory Committee’s Recommendation to Approve Benlysta for Lupus
The U.S. FDA Arthritis Advisory Committee voted 13 to 2 to recommend approval of the treatment developed by Human Genome Sciences (HGS) and GlaxoSmithKline
Tuesday, November 16, 2010
The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations are pleased with the U.S. Food and Drug Administration (FDA) Advisory Committee’s vote to recommend approval of Benlysta® for active systemic lupus erythematosus (SLE), offering patients new found hope for the first approved treatment option in more than 50 years.
The U.S. FDA Arthritis Advisory Committee voted 13 to 2 to recommend approval of the treatment developed by Human Genome Sciences (HGS) and GlaxoSmithKline. The FDA will take the Advisory Committee’s vote into consideration as it reviews Benlysta for approval. A decision by the FDA is expected to be announced by December 9, 2010.
“The panel’s recommendation may signal the historic breakthrough that lupus patients have long awaited,” said Margaret G. Dowd, president of the LRI, an organization uniquely dedicated to funding innovative approaches to lupus research. “This positive vote reinforces our community’s resolve to increase the pace of scientific discovery and clinical development in lupus, made possible by the active participation of lupus patients in clinical trials.”
“The results of both of Benlysta’s phase III trials, BLISS-52 and BLISS-76, show that it reduces SLE disease activity, has a favorable safety profile and allows lupus patients to reduce their use of current treatment options that can cause serious adverse effects,” said Benjamin Schwartz, M.D., Ph.D., a professor of clinical medicine at Washington University School of Medicine in St. Louis and a member of the LRI Scientific Advisory Board.“Benlysta would be a welcome addition to the limited number of treatments available for people with lupus.”
“It’s exhausting to be on such a tedious schedule of medicines which cause so many side effects,” said lupus patient, Sabrina Nixon, “If approved, Benlysta will hopefully decrease the number of medications patients like me will need to stay alive.”
Lupus is a perilous and chronic autoimmune disease that impacts an estimated 1.5 million Americans, primarily young women in their childbearing years. In lupus, the immune system attacks the body’s own tissues and vital organs, making the illness a leading cause of premature cardiovascular disease, heart attack, stroke, and kidney disease among young women. Finding the cause, the cure and new treatments for lupus is a complex and challenging process.
Founded in 2000, the Lupus Research Institute is the nation’s only nonprofit organization solely dedicated to driving novel research in lupus. The LRI funds innovative and creative research to discover new scientific solutions for the disease.
I hope this was informative to all of you! As you know we like to keep it happy, healthy and positive around here, and I cannot think of a better share than this promising hope for the future for Lupus treatments- remember it is not a cure, but it is most definitely a step in the right direction!
This link will direct you straight to the hearing and more details- a good read for anyone interested in learning more! CLICK HERE! it shows you the votes and how the Arthritis Advisory Committee voted on each stand with regards to BENLYSTA! Remember- the panel voted 13 to 2 for BENLYSTA to be approved but this does not mean it has been approved by the FDA, this simply means the FDA will take this into consideration when deciding to approve BENLYSTA as a Lupus Specific Treatment.
Jolt-of-Java: Attitude is a little thing that makes a big difference- Churchill
Monday, November 8, 2010
I fight a battle every day
Against discouragement and fear;
Some foe stands always in my way,
The path ahead is never clear!
I must forever be on guard
Against the doubts that skulk along;
I get ahead by fighting hard,
But fighting keeps my spirit strong.
I hear the croakings of Despair,
The dark predictions of the weak;
I find myself pursued by Care,
No matter what the end I seek;
My victories are small and few,
It matters not how hard I strive;
Each day the fight begins anew,
But fighting keeps my hopes alive.
My dreams are spoiled by circumstance,
My plans are wrecked by Fate or Luck;
Some hour, perhaps, will bring my chance,
But that great hour has never struck;
My progress has been slow and hard,
I've had to climb and crawl and swim,
Fighting for every stubborn yard,
But I have kept in fighting trim.
I have to fight my doubts away,
And be on guard against my fears;
The feeble croaking of Dismay
Has been familiar through the years;
My dearest plans keep going wrong,
Events combine to thwart my will,
But fighting keeps my spirit strong,
And I am undefeated still