Wednesday, June 30, 2010
Tuesday, June 29, 2010
I'm your basic, average girl, & I'm here to save the world, you can't stop me... 'cause I'm Kim-Po-ssi-ble
Why do I walk?
I walk because I can.
While I never envisioned myself having a chronic illness (or a collection of them), I have learned a great deal from trying to live a life with Lupus and the seemingly never-ending complications that come along with it.
I have learned to value time.
Time in general, time spent with loved ones, time to do the things I truly love.
Time is a gift.
I have learned to be grateful for little things.
Grateful for the incredible support system I have been blessed with.
Grateful for each and every day I am granted.
Grateful for the strength I have found within myself.
Gratefulness should never be underestimated.
I have learned to forgive everyone, for everything, because no burden is worth the extra weight.
Let it go.
Forgiveness is always for the best.
I have learned to cope.
To cope with having an invisible illness.
To cope with the side effects of the Lupus and the handfuls of medications I need to be “healthy.”
To cope with the fear of the unexpected.
I have learned to accept.
To accept my illness as a part of me.
To accept that while I cannot change the fact that I am sick, I do not have to let it control my life.
I have learned to overcome and live a happy life with a chronic illness, and while it might not be the life I had envisioned, it’s still my life.
I walk because I can, and because so many others suffering from Lupus cannot.
Monday, June 28, 2010
Good Morning, Well I guess its afternoon already, and the picture to your left describes exactly what i struggled to put into words, "Luck Fupus." This morning was an eventful one which was suppose to start with a big appointment at my Rhuematologist's office, and while i got my test results back from my abdominal ultrasound, my arterial doppler, and my Bone Density Scan, I was disappointed, once again, that the Lupus specialists/research team (Finestien Institute) that I am suppose to be meeting with (because apparently they are very interested in my case and want to track me since I am so young and they would be able to follow me, hopefully , for quite some time) were incorrectly scheduled to be in the office today (mind you this is the 2nd time this has happened!) so I have yet to meet with them, and am anxious to do so to see what input/opinions they may have after examining my case. My results were not great but not awful at the same time. My bone density is normal, which is a tiny miracle considering how much prednisone I have been taking over the last 7 months ( I really do hate the predinisone, but thankfully because of the Cellcept, I am down to 2.5 mg a day starting today! We shall see how that goes...) My doppler showed that I have "amazing anatomy" as far as my arteries are concerned, but diminished blood flow to the lower half of my legs/feet (which I could have told you as they repeatedly turned purple whenever they hang down for more than 5 minute periods of time) and inflammation in my blood vessels (again this was expected, I have reynauds). And finally, my abdominal ultrasound results and excuse me for paraphrasing my Doctor's words, "The handfuls of medications we have you on are destroying your stomach lining, thats about it!" Now I've mentioned the ironic nature of chronic illnesses, and here we have a perfect example. I take prescription medications ( about 20 pills daily) to help and control my Lupus/Fibro/ITP/Sjogrens etc... you get the point...but about a third of these prescriptions are taken to help cope with the side effects of other medications I take. For example, I take prednisone, because of the prednisone, I now take Omprezaole (an antacid), and Altace (because my blood pressure went haywire due to the pred.), to deal with the side effects that I would not have , if I was not taking the prednisone. If that's not ironic and almost satiric in nature I don't know what is, and I'm almost positive every other individual with a chronic illness can relate to the "what came first, the side effects or the symptoms?" dilemma. I'll leave you pondering that question and with our daily Jolt-of- Java (from one of my favorite Childhood authors!) for all of you that had a rough start to your Monday (or a bad case of the Mondays):
Sunday, June 27, 2010
It has been a BUSY BUSY BUSY weekend, & a majority of it was spent outdoors! Now, I personally love the outdoors, but unfortunately, as many of you know (or found out the hard way), the sun is not good for certain chronic illnesses, Lupus in particular. I myself am slightly photosensitive, but if it isn't the disease preventing you from basking in the sun, the medications will stop you dead in your tracks for sure. Luckily, my family has an awning in our backyard that encompasses most of the patio, so I am easily able to avoid the suns rays like I did yesterday, for my little(and by that I mean 5 inches taller than me) brother's H.S. Graduation party! (As much as I would love to lay out in the suns rays and be "bronze" which for me consists of lots of freckles that mesh together and make me look slightly less pasty than usual, I live by the code of the chronically ill and it usually keeps my stubborn self out of trouble!) But today... today was a different story. Today, my younger brother graduated from High School ( I know what your thinking, what high school holds their graduation on Sunday? Well apparently ours does!) His graduation was held outdoors, so I took some precautions...and by precautions I mean arguing with my dad about which sundress to wear because he insisted I wear something that covered my chest and shoulders so I would not get too much sun, and bickering with my mom about whether or not to take an umbrella to protect me from the sun's dreadful rays. Now I'm stubborn and if you tell me I cannot do something or that I have limitations/restrictions It will only make me want to do it more, but I gave in, and wore a dress that had a 3/4 length sleeve and offered a bit more protection from the sun, but as far as the umbrella, well I'll be damned if I'm going to be caught looking like Mary Poppins walking around with an umbrella on a perfectly sunny day. Well, 10 minutes after arriving (still about 40 minutes before the actual ceremony was set to begin), I was eating my own words and standing under one of many umbrellas (thankful that my Aunt Joan and Mom had brought Umbrellas anyway even after I made a point of how I would not use one) in a sea of umbrellas that had taken over what used to be the bleachers for our HS football games. I still got a bit of sun and the heat eventually was my demise proving itself as the bigger adversary. Needless to say I think my "lets go to the beach and lay in the sun days have come to an end...So here are some survival tips for being outdoors for the Chronically Ill:
- Wear loose comfortable clothing (and avoid black, which was my first mistake of the day! Also, this does not mean you have to look like a candidate for "What not to Wear," you can still be stylish and fashionable)
- Stay hydrated (and as much as I'd like to think my 28 oz iced coffee was "refreshing" it probably did more harm than good!)
- Sunglasses are a must! (I recommend a stylish pair of Oakleys or my personal faves, if your into throwbacks, the Rayban Wayfarers!)
- Umbrellas are key! Especially if you are unsure if there will be shade! (Again, Umbrellas are good for more than just rainy days... who knew?)
And Lastly, Mom and Dad are usually right. So know matter how old you are, listen to your parents, they do know best and are always looking out for your best interest! (Yes, thats right, I said it...They were right and I was wrong... but mom and dad, if your reading this...DON'T get used to hearing me say that because I'm NEVER wrong, except for RARE instances like today! ) On that note I'll leave you with the daily Jolt-of-Java, which was inspired by the recent passing of a sweet soul who lost her life to Lupus (and it's complications) & the battle for her life another one of our Lupus sisters' is currently facing:
Jolt-of-Java: When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more blessed than you imagined...& remember We are all in this together & we're here to chew bubble gum & kick some ass (Lupus' & Chronic illnesses'!
Friday, June 25, 2010
After a cup of greek yogurt and giant vat of coffee this morning, I find myself just awaking from a 2-hour power nap (yes I managed to take a 2-hour power nap before noon). I guess I was more tired than I thought, and apparently, not even my super-sized coffee mug overflowing at the brim with a lovely french vanilla roast, could wake me up this morning. Although I haven't been feeling 100% lately, I had forgotten how much Lupus/or any Chronic Illness for that matter, can truly seem to come out of nowhere like a bat-outta-hell and kick your ass, drain you of every last ounce of energy, leaving you feeling less than stellar (lets be honest, thats putting it lightly, because anyone who is chronically ill will tell you that their bad days feel as if they were hit by an 18-wheel tractor trailer), and reminding you what makes a chronic illness, truly "chronic (it keeps coming back for more!.)" So this morning, as I was slowly awaking from my power nap (feeling more tired than when I fell asleep, because thats how naps work?), I couldn't help but think of the ironic and almost satiric nature of Chronic Illnesses, and how little we truly understand about them (especially people that do not have them!). So, I have compiled a list of the:
"Top Ten Dumbest things said to me (or I have heard) about being/having a Chronic Illness!"
10. "But you look so good!/not sick!" (DUH! that's why it's called an invisible illness, because I DO NOT LOOK SICK!)
9. "Have you heard of that new drug, Plaquenil, that came out, you should talk to your doctor about it" (Really? because that new drug you were referring to, was the first drug I ever took for my Lupus, but I'll be sure to mention it!)
8. "I read somewhere stress can cause Lupus, Do you think that's what caused yours?" (No, because 1)stress doesn't CAUSE Lupus that implies that if I stayed calm all the time I wouldn't have Lupus, and that's simply not the case & 2) They do not what causes Lupus, but I'd love to know so if you find out let me know!)
7. "Do You think it's your Lupus acting up? (from my doctor)" (I don't know I'm new at this, isn't that your job to figure it out?)
6. "You know, Caffeine isn't good for Chronic Illnesses, you shouldn't drink so much coffee!" (HAHAHA, if a normal person needs coffee to wake up in the morning, someone who is chronically ill and has to deal with fatigue on a daily basis needs at least a BIG GULP of it!)
5. "For someone who takes so much medicine, you get sick alot!" (Yeah thanks, that's because I take IMMUNOSUPPRESSANTS!)
4. "I bet if you got more sleep, you'd feel better!" (You don' think I know this, I don't stay up until 3 am because I enjoy it and love the info-mercials...)
3. "Will they ever find a cure?" (Well i hope so, but my crystal ball is broke today so ask me again tomorrow!)
2. " Is Lupus contagious?"( No, but apparently Stupidity is..Are you kidding me?)
1. "Does your doctor know you have Lupus?" (No, he's a complete moron.Who the hell do you think figured out that I have it?)
And on that note, I'll leave you with today's Daily Jolt-of-Java:
Jolt-of-Java: Don't take yourself so seriously, no one else does, & remember if your tall cup of coffee just won't cut it, a splash of Baileys might!
Thursday, June 24, 2010
Good Morning Sunshine!
This morning I woke up feeling more tired than when i went to sleep, more stiff and achey than i did the day before, and my cup of morning coffee was less than satisfying... Luckily, I'm here to chew bubble gum and kick some ass and thats exactly what I plan to doo, so watch out lupus, I'm always up & down, but never out...speaking of kicking ass...Wipeout, (one of my all time faves when it comes to a good laugh) which is a cross between the popular japanese game show, Ninja Warrior, Legends of the Hidden Temple (a classic, Lets go Blue Pirranahs) and some twisted version of Human Tetris, kicked off its season primere Tuesday night, and when I say it was with a bang, I mean it literally! As I was watching, I kept thinking, "imagine if I was on this show. HA!" Anyone who has seen it knows why im laughing at just the thought of someone, anyone for that matter, with a chronic illness, even attempting to try out for this show. Now, my personal case of Lupus, leaves me vulnerable to easy bruising & bleeding, poor clotting, and brittle and fragile bones, and in my pamphlet, I use the term loosley because it is more of a short to mid-length novel,for my newest drug, Cellcept, it states, " Avoid activities that may cause bruising or injury..." add in the fact that i tend to be slightly clumbsy from time to time, and you've got a recipe of disaster... So if, by some stroke of God, I made it past the punching wall alive, the Big Balls, with the newest addition, "the motivator" would leave me battered and mangled... but if for whatever reason I were to make it to the next round they call, "Bruiseball" (The name is self-explanatory) would be my ultimate demise... Needless to say, this sounds more torturous for someone with a chronic illness than it does fun.... If you haven't seen it, I strongly suggest you start watching it (if the actual obstacles/bodies flailing left and right doesn't crack you up, the announcers' witty comments and play-by-play slow-mos and drawings certainly will!) But for the time being, here's two video clips for you from Tuesday's season premiere so you have a better idea what I am talking about:
First Part of Wipe Out course-click here
"Bruiseball"-click here (final 6 contestants who survived round 1 with the best times)
Yesterday, on a whim, I decided to look up the show, and do some more research as to what else is required to try out for Wipeout! I was thoroughly entertained at the idea of someone with Lupus or a Chronic illness trying out for it, simply based on the ridiculous obstacles, but was curious what more went into the selection process/try-out. Here is a direct quote from the Wipeout website, " You will be standing in line, most likely outside, for an extended period of time. Please be prepared for it. Wear comfortable shoes, bring a hat and sunglasses, bring a book or something to keep you occupied, bring bottled water, bring a few snacks as well, and lots of enthusiasm!!" If your chronically ill, your probably already laughing... standing for long periods of time, yeah right, not with the way my joints feel... sun exposure? HA! Not unless i want to be covered in a rash and flaring by the time my audition is over...So, needless to say, my dreams of being a Wipeout contestant have come to an abrupt halt... But... there's always Wheel of Fortune!
I'm in need of some coffee (surprise, surprise), So I'll leave you with today's Jolt-of-Java:
Jolt-of-Java: “Life’s journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting ‘Holy shit…what a ride!’” ~Hunter S. Thompson
Wednesday, June 23, 2010
Today the scoreboard's reading, Lupus (or the side effects of the medications) -1, Kimberly-0 , and for those of you with a Chronic Illness, you know exactly what i mean when I say that. With that being said, I needed a pick-me-up this morning, and my ginormous mug of coffee just wasn't cutting it, so i decided to create a "You Know You Have a Chronic Illness when..." list. These have been done on tons of discussions/support groups/forums and always get a good laugh out of me..if you'd like to leave a comment and contribute to the list, I'd love to edit the post and add it on (giving credit to you if you leave your first name/nickname)! So here it goes...
You Know You Have a Chronic Illness When..
* You have more Doctors in your phone than you do friends or family combined!
* Your the only one who can go away on a tropical vacation and not only come back without a tan, but actually look paler than when you left.
* Your invited to the Rheumatologist's secretary's retirement party because your there so much your like part of the office staff!
* You were excited when Coppertone released its SPF 100 lotion!
* Your doctor walks into the exam room, and asks you more questions about your disease, instead of you asking the doctor!
* You have more side effects than symptoms.
* You need a U-haul ( or maybe an 18-wheeler) to get all of your prescriptions home from the pharmacy!
* You know the info-mericals by heart that play on loop from 2:30 am to 5 am because you've been up the past three nights watching them.
* The senior citizens at Costco/BJs go whizzing past you with the shopping carts up and down the aisles.
* You helped the nurse at the Rhuematologist's office through her last break up.
* Your friends come to you for medical advice because you speak fluent/can decipher "Doctor- nese"
* You leave your house for an appointment, but cannot remember which doctor/specialist it is with!
* Your Doctor uses web MD to look up your "new symptoms" because he's not sure what they are or what the hell is going on!
* You have made a reference to the show, "House," when trying to explain your illness to someone!
Hope you enjoy these, and again, please feel free to leave comments if you have some of your own you'd like to share! I would love to add them to the list! Its time for my midday jug-o-coffee so I'll leave you with today's daily jolt-of-java:
Jolt-of-Java: Laughter is the best medicine, unless of course you have a chronic illness, then, laughter and a handful of pills works best!
Tuesday, June 22, 2010
I just got back from an appointment at my Rheumatologist's office for a Bone Density Scan, and I can't think of a better way to start off my Tuesday. For any of you that have had Bone Density Scan, you know that you have to fill out an intensive questionaire prior to having the test done...Now usually Bone Density Tests are done for people (mostly women) over the age of 65, so I had to laugh when the first question was "Are you still getting your period?" My initial thought process was no i do not have my period right now, So I circled "NO," This question was followed up by, "If no, when was your last period?" Without hesitation, I wrote 2 weeks ago. I continued down the page answering questions, signed and dated the bottom, and turned it in to Alicia behind the desk (Yes, we're on a first name basis, she even asked how my mother was doing today, you can add it to the list: You know you have a Chronic Illness When...) and she began to laugh almost immediately. I wasn't sure why and returned to my seat, no sooner did i get into my chair, than Alicia called me back up and pointed out to me that Question 1: "Are you still getting your period?" was directed toward older women and was asking have you gone through Menopause yet. So my answer of "No" had gotten a good chuckle out of everyone in the office, except for the sole man sitting in the waiting room, who seemed uneasy and uncomfortable by the conversation, and even a bit confused, like a man trying to pick out a box of tampons for his wife/girlfriend, this poor guy was obviously out of place, and overwhelmed...After a few more solid laughs, a woman I did not recognize as part of office staff(a rare occurrence), approached Alicia and whispered something to her. Alicia then asked me what year I was born, and the woman (radiologist) looked shocked to see who replied, as her glare seemed to be fixed on the elderly woman who was beginning to drool while falling asleep in the corner. She then picked up my chart, which is beginning to look more like the Oxford English Dictionary, and said, "But you don't even look sick!" I had to laugh, because for anyone who is chronically ill, especially with an Autoimmune disease/Invisible Illness (or collection of them), you probably get this a lot too, and it is the title of a very popular website for the chronically ill called, "But You Don't Look Sick," or BYDLS (if you are fluent in the Code/Language of the Chronically Ill)... I'm in need of my daily (more like hourly) caffeine fix so I'll leave you with today's Daily Jolt-of-Java:
Jolt-of-Java: What other people think of you is none of your business & remember, if we all threw our problems out into a pile, and saw everyone else's... we'd grab our own back in heartbeat.
Monday, June 21, 2010
After along night with not much sleep I'm having trouble getting my day started today, I'm not saying I have a bad case of the Mondays, but I'm exhausted and already on my second ginormous cup of iced coffee. Now I don't mind not being able to sleep, in fact, its something Ive gotten rather used to over the past few months, since I started prednisone. Prednisone, a drug you love to hate, and hate to love but you do in fact love it and hate it at the same time. Its loved because when in comes to alleviating joint pain, muscle aches, fatigue and all The side effects most of us deal with on a daily basis, no other drug compares....but the side effects of prednisone are not to be taken lightly. The predinsone makeover ( as I like to call it), can lead to wieght gain, headaches, blood pressure issues, thyroid problems, hair falling out and thinning, and the list goes on and on, but my favorite side effect is the wired, up until the wee hours of the morning, can't sleep because your heart and mind are racing a million miles a minute side effect...and even though my dose has been consistently tapered for the past few months, its still rare that i get a decent night's sleep. So what do you do at 3 am when your wide awake? Some read books, some get up and do chores around the house, some even start blogs (a little tribute to how this blog was created), but when I can't sleep I watch infomercials, with the hope that they will bore me to sleep, and because lets be honest, what else is on at 3 am on a sunday night? So last night I watched 2 and a half hours of infomercials, (well the same three infomercials on loop) and because not even these tedious infomercials could bore me to sleep, I can now recite them word for word and could probably sell you Shamwow! On the spot. Needless to say it was a long night, that will be followed with by a day where i will not go without a cup (who am I kidding, a jug) of coffee for more than 15 minutes...and on that note, it only seems fitting to leave you with today's daily jolt-of-java:
Jolt-of-Java: if your having trouble sleeping, do yourself a favor, and don't watch the infomercials, unless of course your in the market for 3 new identical sets of knives ( 1 that you buy and 2 that they throw in for free if you buy within the first 5 minutes of the infomercial)...& just because its 4 am, its never too early for breakfast with a tall cup of freshly brewed coffee!
Sunday, June 20, 2010
I just put a pan of brownies in the oven for father's day, and I would like to wish all the Dads out there a happy father's day as well! I'm very lucky to have a dad as great as mine, he takes care of my family and is aways putting everyone ahead of himself. He is also where I get my sense of humor from, and has always showed us that laughter really is the best medicine! So in honor of him, I decided to bake some M & M brownies, because lets be honest, the best gifts don't come from the store, but rather, from the oven... Unless of course that gift is a Camaro ( my father's dream car)! The truth is, if I had the money I'd buy I'm a Camaro, its the least i could do considering i am solely responsible for ALL of the gray hairs on his head, but because my funds are limited, he will have to settle for the brownies. My dad has also shown me how to always find the positives and to never take life too seriously, because lets be honest, no one gets out alive lol. So in honor of my poppa bear our daily jolt- of- java is a quote from the man of the hour:
Jolt-of- Java: " if it weren't for bad days, you wouldn't know what a good day was!" - Poppa Bear's words of wisdom, & remember, if your thinking about buying your father/ husband one of those shirts that have a picture of him (or hid kids) printed onto it, and says, " World's Best Dad!" he'd probably prefer a pan of brownies!
Happy Father's Day!
Saturday, June 19, 2010
For those of you who are chronically Ill you are most likely familiar with this term "spoonies," ....and for those of you who are not it is borrowed from Christine Miserando's " Spoon Theory," and has become a quite popular term in the world of invisible illnesses. The spoons represent the amount of energy a task will take, or how much energy you have to do your daily tasks each day... For example you 'll see people wishing each other lots of spoons, basically this is a way of wishing your fellow " spoonie" a good day. A " spoonie " which I have used a few times, is a person who is chronically Ill. Now that you have taken spoonie 101, I suggest anyone who is unfamiliar with "the spoon theory, " to check it out, (i will post the link at the end of this post ) as it offers an unusual and scarily accurate look into a day in the life of the chronically Ill.
On a sperate note, after starring at my cellcept prescription bottle for 3 and a half hours last night, I finally worked up the courage to take it around 12:30 in the morning....and aside from an upset/ nacious stomach ( which let's be honest, when you pop as many pills as i do, you come to expect and almost get used to having an unsettled stomach) I'm not feeling too bad, but i could however use some extra spoons!
Wishing you all lots of spoons today & as always, I'll lve you with the today's daily jolt- of - java...
Jolt-of-Java: Taking prescription drugs is 90% mental... The other half is physical ( a little tribute to Yogi Berra for those of you who are baseball fans)
The Spoon Theory
Friday, June 18, 2010
Like I mentioned yesterday I was suppose to start a new medicine last night, but i wimped out big time! Tonight however, I'm 95%positive that I'm 100% starting this new medication... The trouble with it is (aside from the small novel that comes with it listing all the possible side effects/ ramifications and things you are NOT to do while taking this medicine) you have to take it at least an hour before you eat, or at least 2 hours after... This might not seem like a huge deal, but if you are chronically Ill you know this is more complicated than it sounds, because I have some meeds that need to be taken with food, 2 to 3 times a day, I also have meds that need to be taken at bed time and now have to somehow maneuver this one into my schedule... And my super sized pill case just isn't cutting it anymore, I'm thinking about getting a personal secretary to manage my medication list/ schedule...any takers?
It was another eventful morning, and what morning wouldn't be complete without sitting in a doctor's waiting room lol. The Good news, they had free coffee... I don't think there will ever be such a thing as TOO much coffee for me... no cup large enough at DDs, Starbucks, or 711 (although a big gulp of ice coffee is the biggest I've found), and I have even perfected the art of homemade iced Coffee...the truth is if I could get it intravenously, I probably would... I'm taking a relaxing day today after yesterday's events, I'm finding myself still a bit worn out from the foot-race against the mob of walker and wheelchairs at the pharmacy...So I'll leave you this morning with the daily jolt of java to get your morning started (lucky for you if you are just getting up!) and as an afternoon shot of expresso for those of you who have been up...
Daily Jolt-of-Java: Remember if you can't laugh at yourself, you can always laugh at someone else... and never underestimate the power of a good cup of coffee!
Thursday, June 17, 2010
Long story short, for those of you who are chronically Ill and are having slow start to your mornings (like me), I'll leave you with some words of advice that from this point forward we can refer to as our daily jolts-of-java: sometimes just getting up and out of bed in the morning is a big enough task, if today it's too big of one, have breakfast in bed!