2:26 AM

Another night spent awake. If I was honest with myself, I would say it’s been going on for weeks. Waking up in the middle of the night/wee hours of the morning. I sleep maybe an hour or two straight and then wake. It has become utterly frustrating . I’d like to pinpoint why this round insomnia is happening, but I seem to be coming up short. Some nights it’s pain related, other nights my thoughts get the best of me. Then there are those nights where there is nothing… no thoughts, no excessive pain… nothing at all. I just lye here, awake. 

Most wouldn’t understand. I’ve tried everything from bedtime routines and baths before bed to medicines and teas. My Sour Sop works the best, but it’s still not full proof. 

So I am here, hoping my fellow insomniacs are  doing well! 

Xoxo,

Me

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Ass Handing…

My body is angry… Laying in bed (Yes I realize it is 6:55PM EST) and I feel like I just got my ass handed to me. You know Lupus is part of the culprit when you barely get in the door from driving home and can barely manage to get in the shower. Hell if I could actually bathe myself. So I SAT. I waited a couple of minutes and mustered enough energy to wash and get out. Now I am trying to muster the energy to get dressed. This of course all while still not executing breathing appropriately from my last asthma attack and the shakes. 

You may wonder how I have the energy to write. Well, my talk to text is my best friend. Plus, I want any of my fellow chronic illness warriors out there that may be  getting your ass handed to you today… I’m there with you and WE’VE got this!!!! 
Xoxo,

ME

Darkness (to be continued)

The  darkness holds the silence.  The darkness knows the fears. The darkness holds the tears from all the pain I hold so dear. The darkness holds my secrets and brings me to my knees. The darkness has been my secret diary that no one ever sees. 
I speak into it the words that fall upon deaf ears. I cry into it tears that have yielded no remorse because of others fears. I scream into it sobs of anguish and pain. 
The darkness is my solitude because it holds no shame. 

Day’s Like Today

Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.

Kylie McPherson

 

The pain can be excruciating, mood altering, and downright unbearable. Day’s like today, I get it. I get how someone is pushed to the brink. I get how someone normally so sane and logical can be pushed far beyond their limits and be anything but. Day’s like today, there are only minutes. I count the day in minutes. I made it through another 30 minutes without going home or without giving up. At the end of the day I am proud of myself, but to get there is no easy feat.

Life has been an interesting ride as of late. Diagnosed with steroid induced diabetes a couple of weeks back, I have been fending off sugar drops and rises like the most seasoned tennis player. Add to this insomnia and pure exhaustion, I have a pretty good idea of what induced this onslaught of body pain. None of that makes it any easier. Opening my eyes this morning the pain I felt, felt as though I was in a car accident. The exhaustion I felt, felt as though I had taken some form of sedative. Neither of which actually happened. Like us chronic illness warriors always seem to do, I pulled myself together as much as humanly possible and off to work.

One that does not live with a chronic illness may not understand what it takes. To walk to the copier, to type an email, to even sit for more than a few moments. It is all excruciating. Better yet, to wear clothing that is not loose is a mission. Day’s like today, I am proud of my chronic illness sisters and brothers on a different level. Day’s like today take more skill and determination than normal days. Unfortunately day’s like today often outweigh the “normal”.

So my fellow sisters and brothers on days like today and every day I am with you. I stand strong for you. Above all I wish we were all together to hug and hold one another. Because let’s be honest on days like today what I really need is a hug.

 

XOXO,

Undefeated Diva…

Dear 2014

Page 365 of 365, are you ready to close the book? –ME

Dear 2014,

You were filled with firsts and lasts, enemies and friends, pain and beauty in abundance. Day’s I never thought would end and day’s I wished would go on for eternity. A roller coaster from day one you brought with you a whirlwind, which at times I wished I could get off. Unfortunately, we all know life isn’t always accommodating in that way. Without question you taught me that I have a much deeper sense of will and self then I ever realized, all while teaching me that there are some unflattering things that I need to take care of STAT. 2014 you were about learning and “being still”. I spent much of you attempting to tame the ways that have in the past been destructive. Even when you brought about changes that brought me to my knees, you gave me strength that was unwavering.

2014, you also brought me the most beautiful news, that 2015 will bring me the beautiful title of Mommy! With all of your strife, 2014, you taught me more about me, showed me beauty, and taught me that even in my darkest hour hold on to my light. I have learned that my light is what keeps me human and reminds me of my humility and compassion. You taught me to love differently. You also reminded me that even when others doubt me, to NEVER doubt myself. Even when the crowd goes left, go right if it feels honest.

Thank you 2014 for the happiness, laughs, and tears. You made me stronger and smarter. Tonight will be bittersweet but a swift kick in the ass out the door will be my final goodbye to you! I welcome 2015 with open arms and an open heart.

Peace out 2014… Thanks for the lessons but I’m not sad to see you go!

Xoxo,
Undefeated Diva!

Getting to know the new me…

Sometimes it’s the journey that teaches you a lot about your destination.

I have searched for the eject button on the recent path of my journey, to no avail. In the years since my diagnosis I have done what I always do, plow through, head held high, never looking back. As of late that methodology has not been as comforting. Life’s lemons are still sitting on my porch waiting to be made into it’s potent beverage. I have stared at them not quite understanding what to do with them, as my normal kick ass, straight forward approach has had me coming up drained and in the same place. Stagnant and drained are pretty substantial words to describe my current state of being. I have pondered and scoured for an answer to the “why” and it wasn’t until several days ago that I found the answer.

Let me be clear, my friendship with my chronic illnesses is nothing new. We are several years in and I thought that I had gotten a nice hold on them. What I wasn’t ready to admit to myself or the world around me was that, I no longer knew who I saw in the mirror. She looked familiar, she sounded familiar, but all in all not the same person. Really, it should have come as no surprise to me but it surly was. As I was in my beautiful world of deep cleaning and ridiculously loud music this week, the answer to the why was so very clear.

I no longer knew myself.

For someone that knew who she was and where she was going in life at a ridiculously young age this was a catastrophic blow. It all made sense though. The feeling of being lost and alone even when I was surrounded by the people that loved me most. The feeling of unease and uncertainty when I had the best support system someone could ask for. It all made perfect sense. When all you know is this semblance of a person that handles life with a vigorous fire that can never be snuffed, then you find yourself confused and depleted from life’s lemonade, you can’t help but feel shaken down. Right now, in my life I am getting a shake down. One day I woke up and I was in another body that had unimaginable pains, unclear thoughts from what could only be described as a foggy state, and a back bone that no longer stood straight. Who was this person? How did this happen?

Getting diagnosed wasn’t the hard part, reacquainting myself… well, with myself has been the most excruciating experience. Trying to do this while living life on life’s terms, well now your asking for too much. Having to work, be a wife, a daughter, and fuck it a productive member of society… All the while trying to understand what happened to you… Now that’s a damn epic mission. Nevertheless, I realized it and all of the missing pieces came together. I hadn’t realized that it was going to be a grieving process or even a process period. The vibrant woman was now a slower moving version of who she used to be. A more jaded and fatigued version of who she used to be. The woman that looks back at me in the mirror is tired, depleted, and honestly a little angry… Not the old me that was the fire spitting free spirit with endless energy. Can I place all of the blame on chronic illnesses? Well sure I can but that’s not who I am. I take responsibility for my actions and my part in the situation. I could have done more about my illnesses. I could have done some more soul searching. In the end, I won’t look back at what I could have done, to me thats a waste of perfectly good brain cells that I should preserve for days that the brain fog sets in.

So where do I go from here I asked myself. Well to the beach of course! So I find myself at the beach, searching for answers to questions I thought I already had the answers to. I am searching for answers and way to steer this new way of life for me. To figure out how to still be that firecracker powerhouse that is determined to teach the world all the while possessing a body that does not match the soul.

What I have come to realize in all of this is, this is normal guys. I am no different than anyone going through any struggle. It is real, it is normal, and it is going to be O.K. Now I just need to find sticky notes to help with the brain fog and some great heels!

Until Next Time.

 

XOXO,

Undefeated Diva!

Healthy Alternatives- Miss Lotties Farm Review

A healthy outside starts from the inside.

Robert Urich

** Disclosure: Remedies are not one size fits all, this is what worked for me**

To say I have never felt so welcomed in someones home, would be an understatement. After several Facebook conversations with Robin, the matriarch of Miss Lotties Farm the time had come to meet her. The excitement was beyond words.

Let me start at the beginning. Hey, I live with Lupus just in case none of you knew! The pain that has accompanied my Lupus has been astronomical as of late. My amazing father (President, Technical Edge Electric) so happened to be doing some work at Miss Lotties Farm, when a conversation was had concerning what the farm represented and his beautiful daughter. (Hell Yes… That’s me 🙂 )

After doing what of course was a phenomenal job by my father, he “harassed” me to come by and drop something off. When he arrived he handed me an insulated bag and instructions. He proceeded to explain the day’s happenings and how Miss Lotties Farm came to be and why what looked like a suspicious substance was now sitting on my counter.  He explained that the suspicious substance were in fact leaves in the package, called Anamu (what a relief I was not going to be a suspect in any crime 🙂 )He went on to tell me about what Robin told him and how she wanted to be sure I researched all of the plants that Miss Lotties Farm has, prior to making any teas from the leaves. This woman obviously did not know I had a 10 degree PhD from Google University!!!

It took several day’s to finally sit and research and actually make the tea. After day 1 of drinking the tea, I was pissed at myself that I did not make the tea sooner! Although it did not fully expel my pain, it allowed for several hours of uninterrupted sleep. About a week or so after their initial meeting Robin did the one best customer service move, she reached out to both of us personally to see how things were going.  After finding her email and speaking to her for several days, we set up a face to face meet and greet. There was no way I would keep this information to myself if it actually worked but I had to be sure that I went to the farm personally and legitimized the process before sharing it with all of you!

*See peeps, I have your back. Always know I will never put something out there that I have not tried personally.*

So back to the top. Myself and a friend drove the 45 minutes or so from my home to Miss Lotties Farm. The farm itself sits on the land just behind their home, which is actually their back yard but it’s to big to constitute as a “back yard” more like a back half of a football field. Before even getting out of the car completely, I already felt welcomed. We were greeted by Robin and Ron standing at their door, and ushering us in to their beautiful home. We quickly sat on their couches and without hesitation Robin says, “I do not know much about Lupus, what is Lupus?”. I respected that she did not attempt to hide behind some Web MD facts, or some hear say. She gave me the opportunity to do what many don’t, explain that it’s not a one size fits all disease!

After a nice conversation, we were ushered outside to what was the most beautiful sight. Rows and rows of healing possibilities just outside the confines of their porch. Now, Miss Lotties Farm carries three types of trees, Anamu, Moringa, and SourSop. Both Robin and Ron walked with us and discussed the inner workings of the farm and how it came to be. We were shown to the edge of the farm and were explained the plants, the way they run the farm, and the inner functionalities of each plant they have. Not once did Robin or Ron pretend they knew everything there is to know about healing alternatives, but for just starting the farm 14 months ago they were well versed in positivity and finding natural ways to heal the ailments. They both shared several amazing stories about how the plants helped people and you know what made me smile most? The fact that telling the stories brought such amazing smiles to both of their faces. Listening to both of them and visiting the farm cemented what I already knew. It cemented that these guys were not doing this for the money or notoriety, they were in the business of helping people and they took immense pride in this.

As the visit was coming to an end, I was almost saddened that I had to leave. I felt as though I had made friends for life. I left with a bag of each plant leaves and promised them I would return soon. On my way hope I went over the day’s events and smiled at the endless possibilities. I looked down at my packages and swore to my body I would do whatever it took to heal it.

Many of you out there know that sleep deprivation is one of the top complaints from someone with a Chronic Illness. I have made tea from Soursop leaves and have to say… I have slept every night I have had the tea, and I mean slept! For someone who was so very skeptical, I am a believer! Although, I still approach every situation with a skeptical eye because remember “If I can’t trust my body, how am I supposed to trust anything else?” Christina Gorgon.

I hope if any of you get anything from this, it’s to do some research on some natural alternatives. If you decide to order from Miss Lotties Farm, know that I have personally gone there and what you will get from them is nothing short of stellar!

Heres to kicking Lupus or your chronic illnesses ass!

XOXO,

Undefeated Diva!

 

Some Information:

 

Electrical Company Mentioned:

Technical Edge Electric:

http://technicaledgeinc.com/about-technical-edge-inc-electrical-contractors/

 

A small snippet of how Miss Lotties Farm came to be:

“January 2013 our 8 year old great niece Lottie had some health issues, so her mother put her on herbal supplements. Although they were purchased from a supplier’s website outside the United States, she made some improvements. Our family had some concerns regarding the quality of the herbs, such as how and where they were being grown and processed. ”

 

For the rest of the story, please visit:

Miss Lotties Website:

http://www.misslottiesfarm.com

You can also get up to date information at:

Miss Lotties Facebook:

https://www.facebook.com/pages/Miss-Lotties-Farm/1441952372724251

 

Below I have included a small bio for two of the three plants at Miss Lotties Farm:

Anamu:

ANAMU
HERBAL PROPERTIES AND ACTIONS
Main Actions Other Actions Standard Dosage
  • reduces pain
  • reduces spasms
Whole herb
  • kills bacteria
  • reduces anxiety
Infusion: 1/4 to 1/2 cup 2-3
  • kills cancer cells
  • reduces fever
times daily
  • kills fungi
  • lowers blood sugar
Capsules: 1-3 g daily
  • reduces inflammation
  • kills insects
  • kills leukemia cells
  • promotes menstruation
  • reduces free radicals
  • sedates
  • prevents tumors
  • increases perspiration
  • kills viruses
  • expels worms
  • kills Candida
 
  • increases urination
 
  • enhances immunity
 

 

SourSop:

Family: Annonaceae
Genus: Annona
Species: muricata
Synonyms: Annona macrocarpa, A. bonplandiana, A. cearensis, Guanabanus muricatus
Common names: Graviola, soursop, Brazilian paw paw, guanábana, guanábano, guanavana, guanaba, corossol épineux, huanaba, toge-banreisi, durian benggala, nangka blanda, cachiman épineux
Part Used: Leaves, fruit, seeds, bark, roots

From The Healing Power of Rainforest Herbs:

 

GRAVIOLA
HERBAL PROPERTIES AND ACTIONS
Main Actions Other Actions Standard Dosage
  • kills cancer cells
  • relieves depression
Leaves
  • slows tumor growth
  • reduces spasms
Infusion: 1 cup 3 times daily
  • kills bacteria
  • kills viruses
Tincture: 2-4 ml 3 times daily
  • kills parasites
  • reduces fever
Capsules: 2 g 3 times daily
  • reduces blood pressure
  • expels worms
  • lowers heart rate
  • stimulates digestion
  • dilates blood vessels
  • stops convulsions
  • sedates

Rob, Myself, and Ron

IMG_0203

 

I dare you say something!!!

“Not guilty by reason of Prednisone”
Gorgon

BOOM! You have a flare up, you stub your toe, you have chest pain, body aches. Just pick a complication, because 9 times out of 10 the treatment plan is still the same…Drum roll please….. STEROIDS… Most often Prednisone, but steroids come in several shapes and dosages.

You get sent home and reap the reprucussions of the side effects, of a medicine that is keeping you alive. The list of side effects to steroids is endless, but for me I cringe at the thought of the wrath. The silent hunger that creeps up on you and wakes you out of a dead sleep (when/if you can actually obtain it). A hunger that claws at your insides like you have not eaten in days… When honestly it has only been 2 hours! This of course is only one of many side effects. For me, a short fuse would not begin to describe the C4 loaded box in my chest. I know it’s there, I know why I am emotional, but hell if I can control the explosion once it is ignited; most often over nothing… *BOOM*

Then as the dust settles, if you are any type of human being you assess the casualties. Often times leaving in it’s wake it’s share of emotional hurt or pain. I am not saying this is right, but at least I am human enough to admit the truth. This is the problem ladies and gentlemen, often times people say they are being “real” when in all honesty it is the “real” they want to portray. Well, me, I am here to give it to you straight. If you don’t like it, well thats okay. I would be doing everyone an injustice if I sugarcoated even a word in my blogs. The down and dirty, good/bad/and sometimes ugly truth, SHIT HAPPENS and chronic illness SUCKS…

So to make me happy… Tonight as I wrote this up, I partook in a mini fiesta in my kitchen! I’ll give it to you guys, it did in fact look like I was hiding something; As I stood in the corner of my kitchen with only the light from my iPhone flashlight, going to TOWN on some amazing chips and dips… I laughed, because I sure as hell had NO SHAME! I had ignored the hunger for so long that the hunger pains actually ensued. My stomach started cramping up and the nausea kicked into hyperdrive… SO I had a choice… Eat the chocolates in my nightstand (resealable bag!) or get up and grab something more.

I will admit, I was craving the ultimate Philly Cheesesteak at that moment. In the end, I ended up with my small little fiesta and boy it was a party in my mouth! My fellow spoonies out there know what I am talking about. The first bite of whatever meal or snack you have when your on steroids is like nirvana. You could be eating a damn burnt hot dog and it tastes like the best meal in the world! My chips and dip did just that. The first bite of my chip, I threw my head back and “mmmm”. It sounds insane, because frankly it is. How could a medicine that is supposed to help you stay alive wreak so much havoc on you. Haven’t you been through enough? I mean for heaven sake you are on the medicine because you are not well.

 

NEVERTHELESS… Exhibit A below is a picture of my 12:17am fiesta! It hit the spot so well, I am thinking I may actually get some sleep tonight! SO, to my fellow spoonies out there suffering from midnight, midday, mid-second hunger/craving pains… I’VE GOT YO BACK! Ain’t No Shame In My Game! Eat, not to the point of being sick… but eat. I snack regularly, I eat fruits for snacks such as bananas (to keep the Potassium balances (Yet another problem from steroids)). I also get the 100 cal snack packs and although I may eat more than one, it is better then eating a damn Philly at 3 am!

In the end, I dare someone say something to me. I almost beg for someone to say something because I would use the opportunity to ask this…

What would you do if the medicine that was supposed to save your life, is also killing you slowly?

(YOU EAT CHIPS AND DIPS! BOOM)

🙂 Good Night and sweet dreams!

 

XOXO,

ME!

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