Divine Destiny with Lupus

Caged? I Am Not

Im Itching Like Mad......I hear the bedroom fan going, and Im sitting here so quaintly drinking tea, with the bathroom light dim and my laptop way t0o bright.  One hand typing and the other sratching.  Its not too bad, bring it!

 Most days i'll want to scratch my skin off (literally) some days I dont walk more than three steps without riping off my shoes and screaming "aww this feels so good" lol.  The fact is, who freakin knows why this medicine does all these crazy things to me? But for now I will have to learn to manage my life around the crazy side effects. 

Am I a pawn? Can you win chess with only your pawn? You can win with any piece on the board, just be aware of who you opponent is.  I'm more aware than ever of the possibilities of my illness, but thru it all, the best position I need to be in is: a positive mental attitude (with god in my corner)

Despite it all, it was an awesome crazy fun summer, 3 or 4 times to vegas, crazy love with an amazing man, birth of a new baby, 2 trips to palm springs, disability from a great job so I can breath for a sec, mexico cruise, grannies 80th and endless amounts of turn around trips in cali..I gotta say, for getting the worst news of my life not too bad....Each day is getting better and filling up with hope, love and happiness...Caged, I am not!! 

It's only hair

As I contemplate the love with my hair, its time to come to terms with the truth, its falling out. Some truths are so much harder to recognize. I tell myself, it's okay, I can wear a wig, I'll wear my hair a certain way, but Ricardo reminds me, your beautiful even if your bald..(deep down I hope it doesn't come to that.

Most never even realize the importance of certain luxuries. Be grateful! Be understanding, be slow at reacting to life's huge major life changes.

...to be continued...

Free Me From Fear!!

It’s freeing to know that man has created such evolution with Medicine, as we sit with the neurologist and I pray before going to walk the plank for my Brain MRI, I quickly realize, this is happening. I am 29 and walking into a room to scan my Brain.

I was engulfed with fear. Fear of the unknown, fear of hearing more answers, fear of him not being able to lie next to me while this test happens. Just plain old fear in every form. "Marrina" called out the staff...I hugged Ricardo "I’m so scared Hunnie", his arms felt so safe, so full of love, "Marrina, you are strong, beautiful, smart and a loving woman, you can do this" he repeated to me. I just couldn’t take anymore answers; I had heard enough and didn’t want any form of tests being done anymore.

As I follow the staff back the chatter of the male nurse seems coached, we get to our destination and he looks at the chart, "oh my, you're young, why are you having a Brain MRI?" I am already scared out of my wits, and now this guys is re-assuring me that I am young...Jeezzeee...give me a brake and just take the darn test...15 minutes later the test was done...and I darted out of there so fast, I just couldn’t wait for it to be over with. I push through the waiting room doors and where the heck is Ricardo? Oh he must be just sitting in the car, so I call, nope, he jogged to starbucks. Going through something so serious affects the people you lean on most, you never realize how quickly your fear turns into theirs also.

Agony at its Finest

One week ago today, I was in the dreaded optomologist’s office, awaiting my punishment. Surrounding myself with good vibes, a great cold ice green tea, my laptop and Bob Marley in the background, I seem to moving with the beat, and it keeps my spirits high and happy, when I have been more down in the dumps than usual. This place is so peaceful and tranquil, ice shoveling for each customer that walks thru the neatly groomed coffee shop, cars driving by hastily, everyone sure does have somewhere to go, and much like New Yorkers everyone has a purpose and a destination. Just at the moment it dawned on me I am blessed, the disease is growing on me, and although I have not dealt with my sentence, not even to 1/3 of the issues that I am going to be faced with, I have a team of five great doctors, some of the best, I am learning to smile again at present. It feels great again.

What a hard concept to realize that a carpet was pulled from under you, did I even acknowledge the carpet to begin with? Probably so, but much like the rest of the women in this world, “I must be tired” “who cares that I feel sick, I must conquer my tasks today” “I’m spinning, its cuz I’m hungry”. Has society forced us women to believe that all of our symptoms or signs are PMS?? I pumped myself full of meds this week. plaquenil was the non-drug of choice, more vitamin C than a 50 year old would see followed by vitamin D and Fish Oil (for my non-meat eaters).

Mornings were no sunny days, and afternoon’s were slow to come. None of my great delish vegetarian food would even stay down for an hour, I shivered with night sweats and I cried un-consolably, my fever seemed so exposed, my fingers ached as limbs were going to fall off. My stabbing chest pain was back at the break of dawn. Wow this drug is strong and in full effect. I received around the clock phone calls from loved ones, what has become of this once full of life 29 year old? Out of fear and anxeity I text my older sister, she is a mom of 4 and knows how to snap me back to reality, she showed me every person who has persevered and gave me hope again for that split second, I must find a new me, I must find a new routine, I must buckle down and not give up. This battle has just begun, I must be brave, I must not be fearful, god has given me hope where I thought there was no light and he has proven miracles are possible; he took me out of abuse. I believe he will make my fantasy world come true.   I must believe!

Educate Your Self

The Blind Factor...

Holy hell, I think I’m gonna have a heart attack from my driver (the hunny) before I even start my medication, he tries three times to pull into a parking spot before he realizes “that’s it, I found the perfect spot” what has gotten into this guy? doesn’t he know that I have doctor’s appointment in 15 minutes? he’s too busy playing chicken with the damn parking spots, well after a good laughter and days of patience, we headed up the elevator to the 3rd floor, # 306 is the hell hole for the next 2.5 hours, yea I said it over two hours.

How come none of these un-friendly staff members warned me of how stressful these tests are, I don’t want to stare at an orange light and look for flashing white lights, that would seriously bother anyone? wouldnt it? The ill mannered and un-groomed MA screams out(with her back towards me) "read these numbers off a card", I must have felt like a complete idiot when I didn’t know some of the numbers, my first thought was “omg, am I suppose to get these answers right”? Or is she a dummy not reassuring me that I did okay. Dr. J walks in full of energy slender and fairly dark skinned, pretty young looking for such an old practice, probably the strangest looking doctor that I have seen in a while, similar questions were asked all throughout my visit in #306, I was asked 3 times what brings me in today? I just wanted to plaster on my forehead “I HAVE LUPUS & MCTD, IM HERE FOR DRUG CLEAREANCE” Dr. J babbles on about how young I am, looking to the hunny  for re-assureance about my diagnoses, and how I’m going to become his BFF over the course of the years. Perplexed on why every doc seems to tell me similar statements? Blahh Blahh Blahh, is what I come to hear when I dont understand the medicine lingo, I keep a "little black book now" expect, my little black book is for questions and words I dont understand in the medicine world.

 “Your test look okay Marrina, so let’s just do one last test, soon after they dilated my eyes, my Hunny had to walk me to the chair in the waiting area. It was a painless process but a weird feeling once I realized I couldn’t see any words in front of me. I was this way for hours, he finally calls my name “Marrina, I’m ready for you in the first room, just go ahead and sit in the hot seat”, the room rosy pink and full of eye artwork everywhere. He puts on a funny looking head light, looking at him and think, are you going to flash that sun in my eyes?? Why of course he did, it was the most uncomfortable feeling and I just wanted it to be over with, was he looking into my soul? (well almost) my fertility doctor looking at my ovaries every week was pretty invasive, not to mention weird since I have NEVER had a male OBGYN. Finally he says “everything looks good, I want to see you back in two weeks, be well young lady”.

As I left Dr. J’s office I quickly realized, I really am going to start this medication, scared and full of anxiety, weeks of reseraching and trying to grasp the noation of meds-4-life,  the Hunny and I sat down over dinner and started to decipher when was a good time to start the meds, well, truly we've discovered, "their is no better time than now".  So, I grabbed for my purse and asked the waiter for water and lemon, thats it! I went into the dark whole, took my meds, there's no turning back now. 



Slap Me Silly....

Once I was in the car, and the ignition running, I found myself wondering what’s the next step. Is there a next step? At that moment I went on like normal, the initial shock set in a few days later, Dr. E call's "Marrina, we are working with your insurance company to authorize your Brain MRI, don’t worry I will have an answer soon" The sound 
of her voice saying don’t worry was somewhat reassuring over the phone, but soon as we hung up, the comfort was quickly diminished. Before our conversation was over she said one last tid-bit, "you have been looking for answers for 15 years, and now we are one step closer to making you feel better". Elated with the idea that I had an answer, just not sure I was comfortable at that time with the answer I was given.

For the next week, the days and nights were all the same, I couldn’t tell the difference between a car in front of me or the TV being loud and annoying. I went to church, prayed, wrote a list of worries and actions, I cried very hard in his arms, I listed to silence, I listed to the wind, I screamed at the beach, I woke up saying "I’m Angry!!". True raw emotion was taking place inside this person, I couldn’t seem to recognize me anymore, my only worries was having fun, working hard, and moving towards my future. At the time I didn’t realize that my life has changed forever.

Awoken by chest pains (which is regular for me), I seem to not be doing well this particular morning, maybe from the drowsiness of over-thinking over-analyzing which I do all too well, none-the-less, Dr. E says you must go to the hospital any time you don’t feel well, So I set off to the emergency room, I stopped and looked at a man, and for some reason, I seen this man’s pain, his troubles in life and I seen people in a different light, I seen humane acts, this was my first point out of my daze, the ability to see others again. 3 hours in the emergency room, and much boredom and worry, I finally called out for my Nurse, Nurse Judy, my chest pains aren’t going away, so I thought maybe I should tell her….Ughhh but I don’t want to tell these darn people, so I dive in and say “I have MCTD and LUPUS”, 1 minute after I told Judy I had these diseases that I now apparently must own, I had a swarm of doctors trying to help me and test me for everything under the sun, it was at that moment that I realized “I am different now”

My Walk to Destiny...



My walk has been long and exhausting. Over 6 months ago, I was on my way to a "pregnancy" doctor hopeful that my odds of getting pregnant in the future were looking up. Low and Behold, they found hints of an autoimmune disease. O
f course the dialogue was "Marrina, the results can be normal, no real alarm, but just for peace of mind, let’s send you to a rheumatologist"...."okay, sounds good doc, let’s do it"...After being on the edge of my seat, of course I asked for a copy of my results, I started googling (oh the joys of a Google education) right away.

 Almost 2 months later and the day comes to see my new doc, "the rhyme" 50 voiles of blood (between the two docs) and apple juice to keep me awake, wow for not being that serious all I kept thinking was damn that’s a lot of blood. In the meantime, I am killing my brain trying to figure out why the heck they are sending 50 voiles of blood to be tested, and for some strange reason the rhyme assured me, "marrina, I don’t see any reason you would need meds". Boy-oh-Boy did that change quickly.

The magical day that changed the rest of my life is here, 11:00 on a beautiful Wednesday morning. My brain was spinning before I even left the house. The drive I think was even worse than waiting in the room, which I might add was old and full of arthritis magazines, I’m 29 I want to see some vacation magazines or at least a few People’s on the table, the presence of old lingered everywhere, but she’s the best says the pregnancy doctor.

 Dr. E. enters the room, her face emotionless, in comparison to our first visit. "Marrina we have a firm diagnoses, you have Mixed Connective Tissue Disease &&&&& LUPUS". WTF did she just say? "& LUPUS" who in the hell has "& LUPUS" did I just seriously get diagnosed with more than one illness, did I hear her correctly? She must have the wrong person. She went on to explain each one of the diseases that I apparently must now own. As I sat and listen to her and she handed me literature, it all went in one ear and out another, the last thing I heard was this medication is "chronic"....again, WTH is "chronic", come to find out, it means FOREVER!!!!! phewww...that was a lot to hear in a two hour conversation, which leads me to why I am documenting my life with LUPUS & MCTD. I hope my story will reach women of all ages (90% of LUPUS patients are women), I hope to touch some lives and eventally heal from writing and sharing "my story"

.... Stay Tuned.....More Thoughts On My Road To Destiny