Posts from the ‘Lupus’ Category

My life is Challenging…I’m Trusting the Path God put me On.

 

My life right now feels like the weather forecast for NYC.  I’m trying so hard just to get that one foot in front of the other, but there’s some days where it just isn’t feasible.  I say it’s not feasible but the POSITIVE  person in me still manages to do so!!! I just can’t seem to figure out why it is that I’m still living sometimes, how the HEll is my heart still going? The lack of its proper function for 24 years is mystery in itself.   If my reason for being here still is to be this example to others that’s great I just would like to have the feeling of “accomplishment” someday.  I just want one day, that’s all I ask for is ONE day where I can do something I’ve always wished for and do my BEST knowing that I accomplished that goal I had always set out to do. Even if that day Never comes, I still put a smile on my face and …carry on!
Jammies & a SMILE!
As I’ve heard it said, “Being challenged in life is inevitable, being discouraged in life is optional!”  It’s up to us to choose the right road. When a person has bad health such as I do I have to admit I do get discouraged at times and mourn the life I never got to experience. I just need to always remember never to allow it to dictate my life. I know God will not give me anything I can’t handle, I just wish he wouldn’t trust me so much.
I absolutely love the post that Loren Ridinger did on her blog today; it is “Trusting the path we’re on. There are a million paths we choose throughout life.”  Loren is definitely my new Favorite Inspirational Woman!  She is incredibly talented, successful and a Great example on how to be a Strong Woman in today’s world. You Go Girl!  I have to also give a shout out to Loren Ridinger’ Fan on Twitter. If you don’t follow her tweets you should.
Well I feel better already! Like I call my blog, God4LifeFASHN4therapy I even think my blood pressure may have gone down. That’s my cue to go check it, it’d be nice to be able to give a decent BP report at least once today.  And this People out in the Blogospherethis is Why I Blog, it helps my health! Heck whatever I can do to not have to add anymore pills to the huge amount I already have to take I WILL DO!

In Loren’s Words… “Take charge of your REALITY”

 

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I have so much to Offer, I’mReady to Volunteer for YOU…Give me a Shot..;O)


So here I am looking at everyday as a means to have a better future, one with meaning and worth. I know I have worth its just that some days when my health is on the downside, things don’t seem as rosy and bright. I’ve been at a crossroad lately where I’m struggling with the person I use to be. The one I was striving to become in an industry I know I was meant to be in. I still have so much Passion inside my HEART and head that wants to just get out. . I now suffer in silence!
I struggle because I can’t just go out and get what I want like I could have in the past. Being afflicted with my “issue” as I like to call it one day I can be fine and the next NOT! I have a HUGE wish and hope that I will one day before I die get to volunteer/intern with someone in the preparations of NYFW. I know if I was never stricken with this “issue” that I would have in some way shape or form gotten to experience that. I was always told I had a gentle but cautious spirit, not gullible and I had a great head on my shoulders. These character traits helped me deal with the people you encounter in such a Competitive Industry. It got me to the places I wanted to go, be who I wanted to be and help me make it through difficult situations less scathed. I’m trusting but not Stupid! Fashion was and always will be my passion in life. I didn’t want to be a top model I was content with where my life was at that moment. I enjoyed the traveling, the people I met and the creations I got to wear designed by very talented people. I loved doing work in the showrooms and shows because I got to interact with others. I have always had a creative side and a Great knack with people. I’ve always been very outgoing with a personable personality when modeling Designers/Companies would ask if I wanted to rep their lines. I took that as a great compliment. I love People and the stories behind what make them tick, where they’ve been, how they got there, their culture, beliefs, their struggles and triumphs, what drives them, the good with the bad. I felt very fortunate to have the life I was leading Then, IIIIIIIIIRRRRRRRRRRKKKKKKK, CRASH, POW!!! OVER, DONE, KAPUT, FINE!! And here I am 24yrs later and it’s like suffering a tragic loss! The loss being the life I had and the person I was before it was so RUDELY interrupted by a million and one god forsaken illnesses. The main jolt of a Quazillion volts of electricity, that being the Major Stroke that paralyzed me…Life, ya I was still alive but not living the life I knew. While I was a guinea pig for 31 days in UCLA & they were trying to figure out why someone so young & healthy (so we thought at the time) could have been stricken by a stroke, my mom had put up a few of my modeling pictures and places I had traveled to give me Inspiration! I’m telling you she was the only constant in my life from that point on! The Inspiration and Faith of my Godly mother! I’m ONLY alive today because of her! Well, and for the fact that I don’t think God is ready for me either. I keep telling myself there must be something I’m suppose to accomplish in this life still or He would have taken me the times I had flat-lined. So, GOD I’M ASKING YOU TO PLEASE MAKE IT APPARENT TO ME WHAT I SHOULD BE DOING WITH THE TIME THAT YOU HAVE ME HERE. Maybe it’s just the mere fact that I’m a person whose been stricken with horrible situations AND illness in her life but is an example to others on how to stay happy, positive and carry on even when I don’t feel like it. I’m the person I am today because of ALL I have gone through. I may have disabilities, but my disabilities do not define the person I AM! I love people see me as their inspiration don’t get me wrong, I’m thankful to still be here and it’s very fulfilling to know just talking about a few of my “issues” is helpful to others. I’m just finding it rough because I miss that feeling of being Productive.   Anyway, I do know

it’s very hard for those who don’t deal with the everyday issues of illness and pain to understand. Even more so for those who have no knowledge of my disability and just know me as the person I am on the outside VERY OUTGOING AND POSITIVE AND WITH THE DRIVE I HAD PRE-ILLNESS. I have an aching desire, want and need to be that someone I felt I was going to be before my life Ended so abruptly even if only for a day.

After having my strokes I can’t do the things I once could and I’ve accepted that. I no longer have the memory I once did and ability to understand things. I’ve accepted that. I tried to go to college and work again but it didn’t pan out because I ended up in the hospital AGAIN and Again. I’ve accepted that also.
So I guess what my main goal for now is to Accept that it is what it is!!

Sorry for the ramblings, the venting, blah, blah, blah…but it’s kind of like therapy!

Through it all I’m still SMILING…All because of YOU!

(I ) Don’t worry about yesterday it’s gone. (I) Don’t fret over tomorrow it’s not here yet. (I) Just concentrate on NOW, live for TODAY, this MOMENT!

…<3 God …<3 Life …<3 Fashn …<3 Fun

Kelly Cutrone…You Inspire Me…!

I love me some Grungy Gentleman on a daily basis, but I LOVE it even more when Andrew Mukamal & his Unbelievable Closet of Extraordinary fashion is featured, (loving the Vintage Dior backpack and Missoni x converse.)

I’ve always thought it would be great to be a fly on the wall at Peoples Revolution. I would love to see his daily attire, his style intrigues me (not to mention the many other Wonderful reasons, like the Incredibly Inspirational Kelly Cutrone.) I love his personality and Kelly’s outspoken, straight to the point, No Bull-shit attitude, hence “If you’re gonna cry, go outside…,” by Kelly Cutrone! Also, don’t forget to pick up her new book, “Normal Gets You Nowhere” April 26, 2011, you can buy both @Amazon.com.

You know, I was never considered Normal and to be honest I’m glad. I would rather be considered abnormal than blend in with everyone else. As my sons T-shirt design says, “Don’t Blend GLOW”… his motto is “Don’t blend with the rest Glow like the Best.”

I was always that girl people couldn’t wait to see, wondering what I was going to look like, what I’d be wearing when I got to school, a party, a  job… I was considered “different”, “weird”, “abnormal”. I’ve always had a very outgoing personality, I keep people on their toes.  Again, I was considered all the fore mentioned above along with “hyper”, or a question of “ What are You on, can I have some?” There Never was and still isn’t  a dull moment when I’m around people say. I can always bring people out of their funk and put a smile on their face. I was an Inspiration to my sons mantra, or so I’d like to think, lol. I’ve just Always preferred to be happy rather than sad, good rather than bad. What did Mae West say,” When I’m good I’m good but when I’m bad I’m even better.”

I saw a quote today on Twitter, sorry I can’t remember who Tweeted it at the moment, but it went something like this, “…There are no more hours in a bad day than there are in a good one”  So the way I take that is why bother to sulk and have a bad day when you can enjoy a good one! Turn you’re frown upside down, make light of every situation, try to find the good in all things…think Positive!

When I watched “Kell on earth” on Bravotv, I loved all their straight forward personalities.  I couldn’t wait to see what was next. They were so great to watch at work, they were doing something I could only wish I would have been able to do. It’s very hard, competitive work with long hours but I would still give my right arm to work for Kelly Cutrone, even if only for a day. I’d like to be an intern, be her gopher, do whatever it is for her & her company that she would allow me to do. I’d pick up her dry cleaning, go to Shake Shack, get lunch… It would be a dream being able to do something in the Fashn World, not to mention for the Greatest PR woman in Fashn. I love her as a mother, a strong business woman, a great book writer and just her overall personality. She is my Inspiration!

This is the part where I try not to get bummed out not being able to be the person I always wanted to be.  If I didn’t have health issues I know that I would be doing something in the Fashn world, not quite sure what, but it would be something in Fashn. So for now, I practice my photography which I would love to learn more about, I indulge in Fashn sites and go window shopping. I’m teaching myself how to do different multi-media art and I’m reading everything I can imagine that comes out in Fashn. Oh, and trying to learn how to Blog.

I want to say Thank you again to All of the Fashion Industry for giving me inspiration that helps keep me positive enough to stay alive and striving forward when the going gets tough. I’m thankful for each and every day I am given. I face each day like the glass is half full not empty. I look forward to each one knowing there’s always going to be new Fashn for me to embark upon.

You all keep me focused and Inspired, my family & myself can’t thank you enough, Fashn for me is Therapy!

…<3 God …<3 Life …<3 Fashn  …<3 Fun

Sneddon Syndrome???

So, it has been a productive day in the Medical area…I’ve gotten another diagnosis today to add to my long list of medical problems. Yes, its very rare, just like me…LOL,  it affects 4 in 1 million people. I get to be one of the 4 lucky ones.

I was diagnosed with Sneddon Syndrome, so I did what any other person would probably do to find out more info. I got on Google and clicked on this site. http://sneddonsyndrome.org/Resources.html Wow, reading all the information here is like looking up the definition for Robyn in the dictionary and all that it says about Sneddon Syndrome would be right on the mark! I’ve been disabled going on 24yrs now. I was working in the Fashn industry having the time of my life when at the age of 20 I had my first stroke. I was then dx with Systemic Lupus Erythematosus.  I went through rehab to learn to walk and talk, just to get better and end up having another stroke.  I was then dx with Antiphospholipid Syndrome or Anticardiolipin Syndrome. I have had uncontrollable blood pressure since I was 20 (my bottom number is always right under my top number, ex: 138/108) I suffer from tachycardia and my pulse is rarely under 100 resting. They discovered I have mitral valve regurgitation. I’ve had seizures in the past and several more strokes or “episodes”. Just the other day I was commenting on how my hands and legs were tremoring.  I would always have the issue with my fingers and toes losing color and going numb, I have since been dx with Reynaud’s. I have had to deal with the Dr.’s in the emergency room thinking I was a nut case because my migraine was so bad that I lost my right side and my face was drooped.  They couldn’t imagine how someone so young could have a “stroke”.

I suffer from migraine headaches quite often making it extremely difficult to live a normal life.  I find myself shut up in the room for hours, sometimes days at a time. The pain I suffer makes life …LIFELESS! I subscribe to around 10 different Fashn magazines, I enjoy following Fashn anyway possible, I Twitter, Facebook, etc.,…that is, Until I have days like the last 3 weeks! It’s all I can do to flip two pages in a magazine or look at some of my favorite Fashn sites, God forbid I want to go to any Trunk shows, Fashn Events, or even just the mall…No, that’s not happening!  So, my patience has been tried, I’ve been finding it difficult to stay optimistic when the things I enjoy aren’t even plausible.

This is where my Faith has to come in to play. I know that …”this too shall pass”. I’ve managed to make it through 24 yrs of Medical Chaos, flat lining…seeing the “Golden Light” and here I still remain.  I know God has me on this earth for a purpose or He would have taken me and kept me when He had me.   So, I stand Strong and keep my Faith and continue to do the One thing I have ALWAYS truly loved;  Fashn, every shape and form of Fashn I can be a part of, I will.  I have to stay positive and be as stress free as this world will allow. Let me  tell you, it gets Real Old!  I’m allergic to more and more medicines that its’ making it difficult to treat me.  Today may have been a TRUE MIRACLE though!…I’m starting some new medications and were thinking Positive!

I’ve had new Dr.’s since February of this year and finally, today, my Neurologist has given me an answer!!  I don’t understand Sneddon Syndrome, but EVERYTHING it says here, is what I’ve dealt with and more for almost 24yrs. I’m so thankful to finally have an answer and more importantly to have this site to help me understand I am Not crazy and there really is something seriously going on with me and its Scary. (Although a lil’ less scary now that I have an answer.

A Great Big Thank You to my neurologist, Dr. Perrine for finally Cracking the medical mystery I’ve been suffering with for far to long. Also, to This Sneddon Syndrome Site

Fashn and Faith for Recovery…keeping me Optimistic, Positive

Faith & Fashn 2my Rescue

So far today has started off as an Ehh day because I went to bed in a bad state!  The one thing I’ve always said should Never be done, just as it says in Scripture,…”Never let the sun go down on Your ANGER” well, guess what, I did!!

I woke up today wanting it to be a better day than the night ended,  so I’m making a conscious effort to get into the “Positive state of mind”, rather the easy way out and pull the SILENT TREATMENT!  I know now from experience that staying angry only causes Me Pain and Anguish.  When a person holds on to anger it manifests its way into an “ailment” of sorts, so for someone like me who has Lupus, Fibromyalgia, Chronic Migraines and Heart issues, that my friends could be the worst thing.  I’m dealing with these aggravating  health issues EVERY single day and all I want when I wake up is to…just Have a good day!

So today, at this moment, I’m going to be optimistic, Sucking it up, and putting on my Smiley face.  I am already feeling the tension in my neck and the rapid heart rate and I’m not gonna end up with another Migraine.

Today, my friends is a new day!…I got my new Marie Claire magazine yesterday and I’m gonna be heading out to Macy’s ~Yahoo!…I’m feeling better already!Again, I’m going forth by Faith, putting all my worries aside.  I don’t need any other reasons to add to my exhausting Pain as it is!   Fashion 2 the Rescue!

…Love God  …Love Life