Friday, October 16, 2009

walking with FAYETH prt 2. MY STORY

Even though i love to share with other's my story and love to hear theres as well, it still gets pretty hard for me to tell, because it makes me see what all ive been through thus far.

well here i t goes, MY STORY.

From birth i was a healty,pretty,sweet, happy, and playful baby. Very smart, had no sense of anykind of problems that could have burdend me. Life was good. At the age of 5 mY mother had gone on her annual ski trip with some friends and i was staying with my aunts family somewhere in the valley. I remember this day so vivdly, i sat in the house on the peach couches, watching what was then my favorite TV show rugrats, while the dogs from outside ( her two german sheperds) behind the sliding glass door, were watching me. She would come in and check on me every 5- 10 mins just to make sure i was getting into any mischef or anything of that sort. The last thing i remember about that morning is her coming in talking to me, me answering back while i did little kid potty dances, but i didnt have to pee, then i hit the floor.

Hours went by and i was still knocked out, i woke up to me laying down in a room of bright lights,cords all over my body, some were in, some were out. It turns out i had been there for sometime, my aunt was all in a craze. I woke up, and the questions started to fly in, "jordan, are you okay?" all i wanted to know was, where in the hell was I, how did i get there, and where was my mommy? The doctors finally came in, and talked to my aunt about me having something called a seizure. They said they were gonna run some test, and keep me for a couple of days, so they could see what my case was about.

My mom finally flew back in, and was there to pick me up from the hospital. Stilll not knowing what was going on in my little 5 year old body, i just went with the flow, and was happy as hell to see my mommy.

About two years later after extinsive tests, and way to many dr.s visits, I was introduced to a man at childrens hospital by the name of Andreus Reiff. By 7 i was undiagnosed with mixed connective tissue epsteins bar that the dumbass valley doctors diagnosed me with, to Lupus, which ive had from the get go. Reiff was and still is a great doctor. He introduced me to many children with my same problem, always took me step by step to what was gona happen to my body, good and bad.Hw even introduced me to the rhetuximab chemo therapy study that im in today. But after 11 years had went by, insurance was changed and i had to switch doctors. I wasnt to happy about that.

During that time, of having Dr.Reiff by my side, i had been through elementary, middle school and even high school( welll some of it) years of losing and gaining way to much weight, i had to stop my one and only passion (dancing) because the joys of Lupus came with two friends called Arthritis, and Asthma as well. And little did i know, things were only about to get worst.

One day after a Laces basketball game with my friends i went to a church lock in. everything was going well, we were all having fun, watching movies and talking until i started to get these sharp burning pains in my legs. Not knowing what they were i started freaking out, tears running down my face, hyperventalating and tensing up more, until i passed out once again. My mom had came to get me, and took me straight to Ceders Siani hospital where i woke up as soon as we hit the Er entrance, the pain was still there, and much stronger than the hour before, i was screamming, yelling, using every curse word in the book, and scared shitless because i didnt know what was happening to me. You could feel the heat from my legs, and when i stood i would automatcially fall down because there was no strength in them what-so-ever.

They finally got me into a back room where i was introdcuced to what was then the love of my life, morephene. At the age of 16, little did i know that i was about to turn into a drug addict. i was kept on the 3rd floor in that hospital for a little over a month, drugged up every 3 hours on the dot. only so i wouldnt feel the pain, and it felt great! i wasnt able to do much, the drugs also limited myself not to feel anything else so i was just like a vegetable. couldnt walk, couldnt hardly speak, couldnt eat, all i did was sleep.

i had to start having physical therapy close to my release date so i would be able to walk around and eventually get back to school. i left with a walker and what you would think was a lifetime of, oxy,percocet,gabapentin, etc. but i knew that would only last me weeks, and they were stingy with there shit.

a couple of the same bouts happened that year, but i was still never really used to it. I had to end up changing schools my last 6 weeks of tenth grade because if i were to stay at Laces, i wouldnt have graduated with my class of 08' because of all the time i had missed. Around this time, i was introduced to my Doctor who now handles my Lupus Richard Ress. "the best around" ive heard. He truly is a great man. He started me on a trial that Reiff had briefed us about in the previous years called Rhetuxin or Rhetuximab it was a form of chemo- therapy for Lupus, now at first i wasnt fucking with it, my reasons were i dont have cancer, im not loosing my hair, and im not a guinea pig. But, after some research was done and i was talked to by many people i gave in, what else would i have to loose? Scared shitless i was told that i was gonna be hooked up for 8 hours a day for one day within a 2 week period every 6 months recieng this treatment. The first one was the scariest of all, but since i was already in the hospital they just moved me to ICU straped me up and i was ready to go, the painkillers were in, and so was the benedryl so i slept it all off.

it started to get better as time progressed, eventually i did have to cut off my hair, but i wasnt stressing, it was only hair,and at the time kelis had just came out with a bomb haircut, so short styles were in! The treatment worked, but only to a certain extent, i wasnt getting as sick as i had been, but i was still getting sick.

so here i was about to graduate high school, new life ahead of me and i was ready to go. i convinced my mom to let me go to Marymount College in PV and stay up there. i was so over being at home. So thats where i went, i had my own sense of freedom, my owwn apartment/dorm and nobody could tell me nuthing! first week of school, well living there was a biggg party drinking from sun up to sun down, hitting the blunt, the bowl and what ever else you could hit that the little smoked out white kids made. life was good. until about the 2nd week of school i had gotten really sick, i was still takin the pain killers and because my body was so immune to taken them, i had ran out and sent my body into a shock. my roomates had to take me to the hospital were my mom met me. i didnt tell her this straight off the back, because i knew that she would be mre dissapointed in me than anything, so i just said it was the Lupus. i ended up going back to school like two weeks later and was all better for then, i just had a couple more small episodes while living there, but i think i handled them good.

winter vacation. 09' the best break ever. Isaw all my friends that had went to college in other states, I was popping pills and doing coke almost every day. drinking until i passed out, and i was starting to look like a ethiopian child, all skin and bones. My 19th birthday was celebrated in the usual Jordan Faye fashion a hugeee kickback at a friends house, with lots more friends to come, drugs and drinks up the ass, and a shitload of fun. good times, but little did i know that was the end of it all. with basically being "fucked up " all the time i left my house in a rage because my mother kept on asking me unnesscary questions, and wanted me to do little things that i didnt care about so i walked out. ended up over my then bestfriends house for almost a month, continued with my drinking and drug usage everyday religiously and wasnt trying to give it up anytime soon. Until one nights after drinking a whole bottle of wine to myself, and taking a shitload of painkillers i finally gave. I called my very best friend and had a conversation with her about how i wanted to get better at 3 am in the morning and she made me do the thing that i didnt want to. call my mother. so after having this long two hour converstion with my mother, with her still not knowing where i was she hung up the phone and i dont really remember the converstaion but she told me she loved me,and she'll call me tommorrow.

the next day i pick up the phone with her on the other end of it, and also someone one else. she say "jordan, i have malubu detox center of 3 way, they want to ask you some questions so you could get into there rehabilitation program" i said "whaaa? what the hell is this?" why was she calling me with this bullshit. what did i do, i didnt think i needed to go. then she told me what happened last night which i had nooo recolection of, so bascially i was fucked.

i went back home, after friends said that i didnt need to go, and checked into rehad a day later. i went through two detox's and one rehabilitation center for about 2 months. being the youngest person there i was scared shitless, grown men with no teeth trying to push themselves up on me. grown women not liking me, cause i ws getting attention that i DID NOT want. it was all a mess.

for 3 months and some weeks i went to meetings everyday, tried to better myself and stayed cleaned. it was hard as hell but i did it. and everyone was proud of me, i was proud to. but i always had in the back of my head, im only 19 why stop this now? ( sick right) im not even legal to drink yet. yet, was doing everything as if i was a 25 year old rock star.

i loveed it, because using drugs for me was an escape from my reality, i got to escape having this disease im gonna have to live with for the rest of my life, not taking up my passion and watching the people who started with me succeed in it, watching all my friends and family go off and venture to find themselves when im clearly still at home and not making moves anytime soon, to find that real love,and not be scared to face it or to gain there acceptance for loving me for the real me.

i cant say that i quit, because i havent i just dont do it excesivly anymore. sad. because even if i try i cant stop. this is not the example i want to be to my 11 year old little sister. or anyone else for that matter. but sad to say , this is what makes me happy for the moment. im doing alot better in my health as well i havent been to the hospital in sometime now, and i have a biopsy and another treatment just around the corner. ive cut out all the major drugs ive been clean of coke for about 10 months now, painkillers of 5 and pills of 2 i still drink, but not to pass out anymore.

im blessed to still be alive, and i thank God for that everyday. slowly but surely im learning the value of life and enjoying and grasping every aspect of it. well, this is My Story.

Thursday, October 15, 2009

walking with FAYETH. prt 1 STATISTICS.

this post has hit, closer to home for me, than anything that i have talked about so far.

The Lupus Foundation of America estimates, that 1.5 million Americans, and at least 5 million people worldwide, have a form of Lupus.

I was blessed, not burdened to be one of those people .

Although lupus can strike men and women of all ages, 90 percent of indivisuals diagnosed with the disease are women. Most people will develop lupus between the ages of 15-44

I was diagnosed at the age of 5. I am now 19 && counting.

Systemic Lupus (SLE) accounts for approx. 70% of all cases of lupus. In approx. half of these cases, a major organ, such as the heart, lungs,kidneys or brain, will be affected. Cutaneous lupus (affecting the skin) accounts for approx. 10 percent of all lupus cases. Drug induced lupus accounts for about 10 percent of all lupus cases and is caused by high doeses of certain medications. the symptoms of drug induced lupus are similar to SLE; however, symptoms usually subside when medications are discontinued.

I have both SLE and Cutaneous, didnt get the the gift of getting the drug induced one though, bummer.

20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.

ummm, not that we know of.

About 5% of the children born to indivisuals with lupus will develop the illness

I hope not.

Lupus is two to three times more prevelant to women of color-- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives,Native Hawaiians, and other Pacific Islanders -- than among Caucasian Women.

It is difficult to determine the annual number of new lupus cases, or the number of indivisuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span. However, it is believed that between 10-15 % of people with lupus will die prematurely due to complications of lupus.

What doesnt kill you, only makes you stronger. Live your life to the fullest, nothings ever promised tomorrow today. Dare to discover your passion, decide to live your destiny, accomplish, acheive, succeed.

next post, my personal story.

stay tuned.