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!! 

Ways to Know You’re Sick...

1.       When your kitchen countertop starts to resemble a pharmacy.

2.      When you’re able to list the generic names for your prescriptions.

3.      At this point in your illness, you’re probably been to a handful (and counting) of specialists’ offices & you’re so familiar with medical jargon from each specialty; you probably deserve a damn PhD/Honorary Doctorate. I mean you already are an unofficial Social Worker, Patient Advocate, Nurse, Appointment Scheduler, so on & so forth…

Then there’s the obvious stuff; debilitating pain, difficulty breathing, constant painful persistent cough. No one ever said life would be easy.  Just be thankful you woke up today, because so many people weren’t given that gift.  Even through all the suffering and complaints, we still have to give thanks to HIM for giving us a chance to open our eyes, take a breath, and think, speak, freely move our limbs, love and live another day.