Happy New Year!

Hello Beautiful People! It’s my sincere hope that you’ve had a safe and joyous Holiday Season! Happy New Year! It’s officially 2015, and it’s my most sincere hope that you, yes, YOU, (the beautiful person reading this post) & your loved ones have a wonderful year ahead!!  Even though I had absolutely no plans to go out to celebrate New Year’s Eve; I still got cute, you know, for my “Solo-Dolo Party of Exactly 1” LOL… Heeeeyyyyyy, I might be alone, but it doesn’t mean I can’t look cute to bring in the New Year. After my evening shower, I threw on some cute purple, magenta, lilac and white plaid pajama pants accented with  the thinnest, strategically placed gold vertical lines. I paired it with an off the shoulder grey belly top. I quickly swept my hair into a top knot. Added a few coats of mascara to my eyelashes, and as I put on my 2^nd coat of lip gloss, I was super excited at the mere thought of all the possibilities of this New Year of life!

This is the start, to what I hope will be an even more successful year, both professionally and personally for my loved ones, as well as, myself!  All I ever want in life, is for the beautiful souls that surround me to win! You know, achieve their personal best. If there’s absolutely anything I can do to assist them in achieving their goals, dreams, opportunities or aspirations; then I will do everything within my power to help them; you know, as long as it’s legal!!! I’m just keeping it all the way real with you, because this pretty #BrokendownBlackBarbie is NOT about that jail/prison life! Anyway, as I was saying... I have this feeling, like a “for sure” kind of feeling, you know that feeling, like its waaaayyy down deep in the bottom of your diaphragm, or even as far down as the soles of your feet?!?!  Either way, I just have this feeling that anything and everything we desire & work hard towards within 2015; CAN & WILL be achieved & well received, but, most importantly, appreciated & valued!

I can’t get with making resolutions. I am however, all about periodically doing introspective work. I want to make sure that I’m maturing properly and living up to the high standards that I hold acceptable for myself. So far, I’m on the correct path, I’m proud of myself and my accomplishments.  I am still working on things, as we all are. You know, we humans tend to evolve, grow, mature several times throughout our respective lifetimes; well most of us do anyway... Sadly, some individuals stay stagnant; or truly have a horrible/negative disposition about themselves and they sadly ruin everything they touch. This New Year is all about spreading kindness, love & positivity! Let’s make a pact, let’s try our very best to not only think, but vocally affirm POSITIVE things; if we claim positivity into our daily lives, we will see positive changes! The Universe is listening!  Always remember, what you decide to put out into it, is exactly what you will receive in return. If you’re up for the challenge, I look forward to you joining me on this journey for 2015 & beyond!  Enjoy this New Year, it’s filled with hope and opportunity. It’s up to you to make sure you live your best life; after all, we only live this one life, this one time!

Thanks for reading, until next time…

Smooches & Hugs,

Kimberly***

“Practicality vs. Bravery” and why I owe this one to “Jane the Virgin!”

“Practicality vs. Bravery” – thanks to the new hit show “Jane the Virgin” (Monday nights on the CW Network).  I received the new title of my blog post!  In my former life (pre-Scleroderma); I lived by the Practicality Rule. After high school, I went on to earn my Bachelor’s Degree from a University, then I sought out to find the "right job.”  By the time I was 24, I was successfully crossing off my ‘to-do’s” on my checklist. I secured a good paying job, which I was super grateful for, because it was along the interests of my actual college degree/concentration (Sociology & Gender Studies). This was my adult grown up job – it had insurance benefits; as well as, a decent salary & a retirement plan. Most importantly, it had my complete commitment and dedication, which I had never had in my previous jobs post college graduation.  In the beginning, I viewed my job as just that, a job. However, when I was forced to relinquish my position due to my health this past January (2014); I realized, I was indeed on a career track.  I worked extremely HARD for nearly 10 years; so much so, I received a promotion and upgraded from an Administrative Assistant to a Program Assistant.  I remember the minute I was hired for the position, I had a talk with myself. I said in very certain terms, “1. You will take this seriously, 2. You will work for 10 years; then depart to start the 2^nd half of your career as a coordinator in the same field (Residency Training) at another institution, probably in Connecticut or Westchester County, where the pay would be increased by minimum $20,000. “However, the old adage, – “Want to see God laugh? Make plans!”  Is definitely fitting for my circumstances.  My health prevented me from continuing to work in a conventional 9-5 office setting. I was forced to put my health first and foremost and rest/slowdown in order to save my life.

Great blessings came out of my near 10 year experience at my former institution. I found my voice as a writer, my talent as a graphic designer and my awesomeness as an event planner. Work was once the most important part of my identity.  However, when I had to stop working, I went through a culture-shock and had to redefine my self-identity, rebuild my self-esteem, and shift my focus to fit into my new existence. It took nearly a year to really digest that I was no longer gainfully employed under the conventional microscope.  I now had to step out on complete faith! After much prayer and consult, I knew it was time for me to enact the Bravery Rule.  I decided to claim the thing that courses through my veins - Writing. It allows me the opportunity to put my words, thoughts, feelings, emotions and humor together in one medium.  Writing is a wonderful outlet, where I can really get in there and talk about different subjects that not only interest me; but things that are happening in the world, and I lend my unique voice and style of writing to the reader. If you are talented, driven, trust in yourself and your dream; you CAN & WILL achieve anything and everything you put your mind to!  Be confident, work hard at your craft/talent, and be sure to always remain humble & continue to give thanks for your amazing gifts! I know that I wouldn’t have stepped out to claim the Bravery Rule, if I did not have a loving support system that believed in me harder than I ever believed in myself!  You know you are loved unconditionally when the beautiful people around you not only root for you winning; but, they motivate and encourage you to go after your dream!  It is because of their honesty, love, encouragement, and 100% support and contribution to my passion; my dream is now a reality.  I now proudly proclaim - “I’m a Writer!!” I own this truth and I’m proud that I was given this gift of expression.  

Now, I NEED to say this disclaimer - - If you’re about to enact the “Bravery Rule” for a 2^nd half of your career, please, please, please be sure to have some sort of some LEGAL funds coming in, OR saved up to sustain living expenses! I would be doing you a great injustice if I neglected to advise you of this VERY important thing. Go forth, conquer and succeed!!

 Smooches, Hugs & Much Love!  
Kimberly

Do you suffer from S.C.W. Syndrome? Find out here!

Question, do you ever get wrapped up in the “should’ve, could’ve, would’ve’s?”  Are you scratching your head, thinking aloud, “what in the hell, is Kimberly talking about?” LOL, Well, simply put, the “should’ve, could’ve, would’ve’s” are when you replay a certain scenario in your mind.  You think about a specific situation/interaction from your past and you start second guessing your reaction/response to the said scenario.  That “second guessing yourself" is essentially you thinking, you ‘should have,’ ‘would have,’ and/or if you ‘could have’ done, or said something differently; it would have most likely resulted in a new/different outcome, where you’re deemed the absolute victor. So now that you’re all caught up on the “should’ve, could’ve, would’ve’s.”  It actually is the worst damn space to be in!  I guess for those that believe in the proverbial state of ‘limbo,’ this would be the equivalent of SCW’s. Y’all know I had to make the dang acronym, it’s a lot to keep typing out fully. In addition, if you’re an avid reader of my previous blogs, you will recall that I love to create and utilize an acronym!  The SCW Syndrome, yes, I decided to make it a ‘syndrome!’ What else can you call “emotions or actions that usually form an identifiable pattern?” Sure, I could’ve (<- see, I’m doing it right there!) selected the word ‘disease,’ or, ‘disorder;’ but ‘syndrome’ just flowed better. So like I was saying, initially, you know, BEFORE I decided to jump in and cut myself off… SMH.  Anyway, SCW Syndrome is suffered by many.  Some people deal with SCW Syndrome in silence.  Well, I’m going to set you free today! Liberate yourselves, admit this is a ‘condition’ that we need to abolish entirely from our lives!!  I know somewhere, in some part of the world, someone just said it out loud, “I am insert your first name here and I have SCW Syndrome!” Now that you’re aware, you aren’t the only person in life to ever live in this void space.  You may even start to ‘regret’ your initial decision. Once again, I need to help you, “regret is a useless emotion!” You can’t realistically go back in time and rewind a situation. Like this is real life, not one of those “Back to the Future” franchise flicks. The past, is just that, the past! It’s over, it’s never, ever going to come back! Move forward and you’ll live in a space that is amazingly FREE! We have to stop torturing ourselves unnecessarily! We’re a culture of over analytical, jumpy, quizzical human beings that live in cloudy realm of self-doubt. I can no longer be an active participant in this culture of self-abuse, LMAO…. Seriously though, I’m proclaiming a new way for myself and hopefully you, yes, YOU, will join me in abandoning SCW Syndrome. So tell me, are you in??

 

Smooches, Hugs & Much Love...
Kimberly

It’s my 1 year Cannulaversary!!!!

“Cannulaversary” just doesn’t roll off the tongue easily. However, if you know anything at all about me, then you know I LOVE to create some new sh*t!!!!! LOL Yes, I am notorious for creating some type of new word or an acronym.  It’s a talent, what can I say?! [Taking a bow, taking a bow, please, hold your applause.]  So, I’ve decided I would celebrate the day that I was finally approved for supplemental oxygen and thus, required to wear the often dreaded; and at the same time beloved, cannula. Does this sound crazy to you? Not so much to me… If you’ve been rocking with me for a minute, you’ve realized by now that I’m a lil’ ‘crazy.’  Not certifiable, and not quite 7:30, [urban colloquialism that defines the severity of one’s ‘craziness;’ as if it can be measured in actual time] like I need a strait jacket/ I should start hanging out with “Crazy Eyes” from Orange is the New Black type of crazy; but crazy, like an odd sense of humor type of crazy. It’s probably in my best interest to stop (over) explaining my ‘craziness’ at this very minute.  It’s like common knowledge if you over explain something for far too long, you tend to dig yourself into a deeper hole than you initially intended. So I’m going to digress, at this exact moment.  As I was saying earlier on within this post, I decided that this “Cannulaversary” should be commemorated.  This special day marked a new start within my world.  I had been struggling to breathe for a few years and it was challenging to not only watch my decline; but to literally feel the restriction within my lungs and the inability to breathe normal deep full breaths.  Essentially, I was a front row participant in the rapid decline of my lungs.  It pained me to really think about how my body was betraying me. I could no longer walk short distances and breathing was just… laborious. It wasn’t until I received my supplemental oxygen concentrator, the portable tanks, the reserve tanks; as well as, all the extra tubing and cannulas, that I would be given the gift of breathing a little easier.  These supplies were initially met with extreme opposition in combination with quite a bit of trepidation. My pride felt that it was more of a stigma to be ‘saddled down’ with this new ‘burden.’ Like WTF?!? I was only 33 (at the time), and I had been living with Scleroderma since I was 19, Polymyositis and all my other ‘treats’ of MCTD (Mixed Connective Tissue Disease: Raynaud’s, dry eye, mouth and nose, etc.)  As if all of that wasn’t enough to deal with? Now, I’d be REQUIRED to use this “eyesore” both in public & at home?!?! Vanity is a real thing people; however, if you let it consume you, you’re as deep as a cheap a$$ deflated kiddie pool.   One year post of my cannulaization, (yes, this is yet another word I created). I’ve finally transcended above the vanity. I am no longer ashamed of the cannula. How can I be ashamed of something that is helping me to survive?  I now own my confidence and proudly wear my cannula. Don’t get me wrong, I still have a love/hate relationship with the cannula/supplemental oxygen. I obviously love the cannula, because it provides my lungs with the much needed oxygen supply they cannot produce on their own. I’m able to talk for longer spans of time, my overall color is better, as I’m getting more oxygen to flow throughout my entire body. The hate part comes about when I have to worry about breaking my neck when I trip on this crazy 25-foot long cannula cord & tubing.  I know it’s long so that I can easily navigate from room to room; however, why in the hell does it have to get caught on everything?! People with supplemental oxygen know exactly what I’m talking about!  How many times have you been walking swiftly, like you’re on a serious mission trying to go from one room to the next, only to be propelled backwards in an awkward yanking motion with one arm flailing in the air and the other arm instinctively grabbing to protect your neck. Now you may be afflicted with a case of whiplash, your ears are killing you because the damn cord nearly ripped them off; and your eyes are bugged out of your head at the sheer force of the abrupt stop due to the damn jamming of the cannula cord?!?! But I digress.  Whew, I typed much more than I actually anticipated; I’m just so thankful that I’m finally able to breathe the good air!  Happy 1 year Cannulaversary!!!

Have you been unable to get the "official" Scleroderma dignosis? Then this one's for you!

Have you been trying to search for answers re: the multiple symptoms you've been suffering with?  Have you gone from doctor to doctor, and you still don't have any answers as to what may be wrong with you?  Are you feeling like you're at your wits end; and, you're completely frustrated, confused and overwhelmed?  Well, this post is for you!! 

 

I know it's difficult when physicians aren't able to assign a diagnosis to your specific set of ailments.  Awful doctors will tell you, "It's all in your head & you're probably depressed." Whatever you do in life,  DO NOT & I repeat, DO NOT, listen to them! You know your body better than anyone else! You know when you aren't feeling like yourself, and you have pain, discomfort, changes in your skin, a persistent cough; and, the other Scleroderma/ Sjogrens/Pulmonary Fibrosis type symptoms (the list of symptoms is really long. If I were to type it out, um ...I'd straight up need to hop off of the bed, run - -wait who am I kidding? The only running I do is a fake brisk walk! LOL.. Anyway, I'd have to 'briskly' walk to get the braces to keep my wrists in place; because my hands just don't work the same way anymore...but, I digress).  If I can give you the smallest bit of comfort, I want you to know it's definitely NOT in your head; simply put - pain is real! A good physician will be straight up honest with you; if they can't piece together the multiple symptoms you're experiencing. Moreover, an excellent physician will recommend you to a specialist who knows more about the specific chronic illness they 'think' you may have. My advice to you is don't give up hope! Forge ahead & find the best rheumatologist in your area!!!! They will order all the blood tests to search the ANA levels and CPK levels in your body; as well as, give you a thorough physical examination and an in depth conversation so that can take your history etc. Depending on where you're located (geographically), you may check your local Scleroderma Foundation Chapter. You can find that out by going here: www.scleroderma.org,  They can give you the info for their rheumatologists, nephrologists, pulmonologists etc. Another way you can go about finding a specialist would be to go onto the website of the nearest major university hospital & research the specialists. Keep going forward until you get an accurate diagnosis!! Validation is necessary, it will be medically confirmed that you will know you aren't crazy! You are indeed experiencing pain all day, every day. I hope this is helpful!

Sundays…

Sunday, is the one day out of the week when I designate and dedicate a few hours of my morning to channel in and center my spiritual house. Sundays, are the start to a brand new week; it’s the first day where we can wipe the slate clean and start anew.  I use Sundays to connect to a place within myself, where I can freely open my heart to God & receive The Word via the amazingly charismatic Pastor Joel Osteen.  Pastor Osteen knows how to keep his audience engaged and focused.  He easily breaks down the word so that I understand and use the take-away messages from the sermon within my everyday encounters/interactions.  Yes, you read that correctly; I indeed said, “Pastor Osteen easily breaks down The Word, so that I can understand.”  LOL, self-centered much?!?! Yeah, maybe an itty bit yo. LOL Seriously, when I’m watching the televised church sermon, I become transfixed and the messages that are orated by Pastor Osteen usually applies to something that I have been feeling and/or going through personally.  The messages resonate so deeply within my soul, I feel so fulfilled and fed with renewed spiritual sustenance.  After the televised church service concludes, I then, move on to OWN’s widely popular and celebrated “Super Soul Sunday!” I think it the perfect follow-up programming; because it complements the teachings from the sermons.  The “Spiritual Guru’s” that are interviewed by Oprah, have a vast amount of spiritual wisdom which they share through discussing their novels & life practices.  The one commonality seen within the different “Spiritual Guru’s” is the connectedness between the individual, our environment and the greatness of the spiritual higher power.  Everything is intertwined & interrelated.  The messages may be different, however; they ultimately have the same exact result.  All of the messages from my Sunday morning line-up help to revive and rejuvenate me spiritually.  The words and messages fill my heart and I am warmed, and left feeling an overwhelming feeling of love, joy and appreciation for a God that has blessed me with so many wonderful things.  Sundays are special, spiritually satisfying sustenance for my soul! Y’all know I LOVE alliteration yo! LOL….

The Sad Post…

I am not really sure what I’m feeling these days.  It’s as if I’m a permanent resident of the proverbial “rollercoaster of life.” Everyone has peaks and valleys, or highs and lows; but at this current juncture, I feel so alone and a bit lost and really confused.  Does everyone go through these periods? I’m not certain.  I can only speak for myself.  I’m 34, and so uncertain of what I REALLY want for my future.  Is it because I’m secretly afraid that I’d be a bit presumptuous “preparing” for my future; if there indeed is a future?  Tomorrow is not promised to anyone.  The likelihood of a person getting hit by a car and meeting their maker; may have a higher probability than me succumbing to my ‘end’ by Scleroderma.  I know I’m usually very uplifting or upbeat when I write my posts. However, I think it’s only fair for me to show you the other side of my life.  There are days where I’m just so sad, and I feel so cheated; because I have so many limitations and that’s just really hard to truly accept since I have such a fiercely independent spirit.  I have to allow myself to have these ‘negative’ feelings, because I’m human.  Humans have a range of emotions. Pretending to be something I’m not, is just not the move boo! Straight up, I'm too grown and too honest to lie about of sugarcoat something this serious.  It is my sole intention to be 100% transparent with my Chronically Ill Peeps & Readers alike…To be very blunt, Scleroderma sucks! I'm now dropping the mic and sashaying away... See ya in the next post people!!