What I am thankful for!

Good Morning- and I hope all of you had a wonderful Thanksgiving this past Thursday- as you all know the holiday season can cause stress with all the plans, running around, holiday shopping etc. However, today, even though I am a little late (always better to be late than never) I'd like to take some time on the old blog to share with all of you things I am truly thankful for this holiday season, despite living with a chronic illness (that as of late, has been kicking my ass- and I'd be lying if I said I was not becoming a bit frustrated at this point!) So in lieu of my recent frustrations, I am trying to take the high road and a positive spin (in typical CHRONICLYsILLy fashion) and create a CHRONICLYsILLy list of all of the things I am thankful for this holiday season- after all, Thanksgiving is just one day out of the year- and I think we can all agree that we can find things to be thankful for in our daily lives, no matter how big or small! So without further Adieu, I am thankful for:

I am Thankful for...

My family-they are always here for me, supporting me and helping me through the toughest of times, frustrations and struggles

My Friends that truly understand what I am dealing with and simply take the time to text me and see how I am doing

My doctors that despite the frustrations my case of Lupus seems to cause, do try there best to find something that works even though it is difficult

CHRONICLYsILLy- a blog that was started simply from a night of no sleep thanks to lupus complications has turned into a great support system and outlet for me to express my feelings as I try to cope with my illness daily

Having a family that understands my illness and does there best and goes out of their way to stay informed and involved in my treatment

My Dad for always taking the time out of his ridiculously busy schedule to come to my appointments with me to help guide and stay informed, even though we both know how frustrating this can be

My mom for always taking off work if I need a ride to Grad school, or anywhere for that matter because I am too sick to drive myself, and for her help managing my medications (although it seems like I need a personal secretary to work full time to do so...)

My brother for always taking to time to shoot a text or call and see how I am doing and to talk

My lupus friends that are always here for me to offer support and advice- It makes it much easier to feel as if you are not alone dealing with a disease that many doctors know so little about.

Awareness- even though we need alot more of it, the strides that have been made over the past year are a small victory that should not go un-noticed.

Days where I am able to go out and function somewhat normally- This is not to say its without pain- but at least I can enjoy a day from time to time and I hope these days are more frequent than they have been as of late.

This is what I am grateful for today- and I encourage you all to create a list- its more therapeutic than it may seem at first glance, and does help me stay positive- which as of late is getting increasingly difficult. And Ill leave you with a Jolt of Java to get your Sunday's started right!

Jolt-of-Java: Gratitude is an art of painting an adversity into a lovely picture. ~Kak Sri

My Unexpected-Thought provoking- Simply stated-Espresso-induced, Ah-Ha Moment!

“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.”

The Scavanger hunt for: Digestive Advantage- Formula C!

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

BIG DAY FOR BENLYSTA-Reporting to you from the Lupus Research Institute

LRI Highly Encouraged by FDA Advisory Committee’s Recommendation to Approve Benlysta for Lupus

source: http://lupusresearchinstitute.org

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

Bar hopping? NO- we Doctor office hop-The Lupie Doc Crawl 2010!

Good afternoon! And I hope it is a good one for all of CHRONICLYsILLy Folks!

... And so sorry to be so random and sporadic with my posts as of late, but I think my goal will be blogging 3 to 4 times a week during graduate school semesters and whilst I am getting my health under control- I'd love to know what the doc's definition of "under control" is and how it matches up against mine but that is for a different day! I have lots to discuss about my last few days- as I have spent them Doc crawling! That's right- You may bar hop and bar crawl for the big holidays- Hell- I have been known to do some epic bar crawls in my SUNY Cortland days (my cortland girls know what I'm talking about!) however us Lupies and spoonies, we do it big- GO BIG OR GO HOME! We Doctor Office Crawl- but the crawl takes on a whole new meaning! We don't crawl because we are too drunk to stand-oh no! We crawl because our joints are writhing in pain by the time we are headed to our 3rd or 4th office for the day- our joints are inflamed, swollen and aching (where is my hot pink-diva-tastic cane when I need it?!-Oh that's right I'm too damn stubborn to buy it!)

So this past Friday- continuing into my Monday morning- I Doctor office crawled (Something my Lupies and spoonies are all far too familiar with!), and boy were my joints aching- and while I'd like to say the big difference between an actual bar crawl and a doc office crawl is that us spoonies are sober- Well I was not- thanks to my Codeine (which was still doing little to relieve my pain) no worries though folks I had my DD (designated Driver) My good old Poppa Bear with me on Friday and Momma dukes with me this morning! And in typical bar crawl fashion/doc crawl fashion- we went from one doc to another back to the first, and to a third!-->we started at the ENT doc (ears nose throat), moved to the radiologist---> back to the ENT--> (That's right, we doubled back! Sound familiar my bar crawlers!) and then to my surprise, a trip down the hall to the audiologist (Only proving you really don't know where you'll end up during a doctor office crawl!) And after a long morning of more confusion, test results (That contradict and make little to no sense- as always-Like trying to put together the pieces of the drunken night before)- the aftermath of all the doctor office crawl stops- only to end up more confused and where? Of course the pharmacy! what trip to any doctor office (especially after a doctor office crawl) would be complete with a pharmacy trip to battle the senior citizens and their weapons (walkers, canes or the worse-shopping carts etc...) that are twice my age, twice as quick, and take half the amount of medications I do (does anyone else see something wrong here?) In a sense, my prescriptions and new diagnoses I had collected are similar to shot glasses, check marks or T-shirts you would collect on a standard bar crawl I suppose- almost a souvenir of the day's activities and visits, along with my symptoms that I seem to be collecting as the days go on as well! Hopefully This is my last doctor office crawl for a bit- but in the life of a Lupie-You never know when one may take place!

Jolt-of-Java: I'd like to share a poem called the fighter today: An ode and tribute to all my spoonies fighting a chronic illness and any battle every day:

The Fighter

by: S.E. Kiser

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

The Great pain Debate-campaign '010!

That's right folks it's the great pain debate of '010! You heard right- There is a great debate taking place, one you may not even be aware of! It's been happening for quite some time now and this debate has gone above and beyond me at this point- so in typical campaign spirit- I am opening up the floor to all of my CHRONICLYsILLy folks that care to share! Simply leave your comment on this post once you review all aspects of the debate and place your vote! I am so interested to see which side will win! And so, the great debate ensues- and here, without further adieu, I present you both sides of our Great Pain Debate '010 (I think when you start reviewing each side, you'll see where my dilemma lies!)

Taking Pain medication vs. Sleeping/Not taking my pain meds- The Great debate!

Taking pain meds:

PROS:

- pain is slightly subsided/edge is taken off of pain-SOMETIMES

- I am a bit more "easy going" and at ease (thank you Codeine!)

CONS:

-I am unable to sleep ALL NIGHT -aka they keep me up and make me jittery (this is as o late, they did not use to do this)

-They irritate my ANS disorder and cause my heart to race (my tychacardia goes haywire!)

- Anything stronger than Tylenol with Codeine and I am violently ill (so I an unsure what my other options are for relief!)

- Sometimes they do not relieve my pain in the slightest!

Not taking pain meds:

PROS:

- My ANS stuff does not act up much without Pain meds

- I am able to get work done and do reading for school and function/drive

CONS:

- The pain is too much to bare and keeps me up all night (again I cannot sleep on pain meds, but I cannot sleep due to pain without them either... are you starting to catch my drift here with where my dilemma lays...)

- I sometimes eventually will fall asleep but then wake up 18 times in the course of a 4 hour time period because my of my pain levels.

- What do I do for my pain then?

And so that is the summary of the Great Pain Debate - in lieu of the elections this week and election day, I figured now was a good time as ever to present this topic that I have been struggling with for weeks now: and now- I want to hear your opinion so leave your vote for Pain meds or No pain meds and what you do for pain relief that works for you! Let the elections begin!

Jolt-of-Java: ""Some days you got it all together

You swear you have it figured out

Other days you're stumbling and a wondering

What the hell it's all about...

Life's kind of funny like that"