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Brittle Asthma

There is Asthma and then there is:

Defined:

brittle asthma

A rare form of ASTHMA affecting mainly females and featuring sudden, very severe, often life-threatening attacks. Those affected have a mild degree of immune deficiency, with poorly-controlled asthma in spite of substantial doses of inhaled steroids and wide diurnal swings in their peak flow meter readings. The term is also applied to people whose asthma is normally well controlled but who, nevertheless, suffer occasional sudden severe attacks. Brittle Asthma. (n.d.) Collins Dictionary of Medicine. (2004, 2005). Retrieved June 13 2016 from http://medical-dictionary.thefreedictionary.com/brittle+asthma 

Asthma Disease

 

There is nothing more we take for granted than breathing. Hell even I take it for granted, that is until I can’t. Let me paint you a picture, a very real picture. It often starts with coughing or some form of chest tightness. Unfortunately, it never stays that simple for long. Within minutes the chest tightness goes from 0-100. It was a normal Thursday, you know get up, get ready, get little man ready, rush out the door, get little man to day care… But this Thursday was different. 4:28am brought with it a dream that I was drowning, shortly after that I was up gasping for air and attached to my home nebulizer. Crazy how the body works.

It never ceases to amaze me the strength within.  Instead of going to work I found myself in the parking lot of the ER. I thought it would be an easy visit and for all outsiders it was. Simply because I refused to be admitted, yes you have to stick up for what you want or need. Unfortunately, I have not bounced back as quickly as I had hoped. Four day’s later and I am still struggling. Something as simple as putting my clothes on has me breathing like a 90 year old chain smoker. Getting in my car this morning had me sitting and utilizing my rescue inhaler. There is nothing like feeling like you are breathing through a straw. Ever try it?

Some day’s… Day’s like the last four have me mad… Mad at my body, mad about these diseases that take over. No matter how hard I fight, try being healthy, eating healthy, taking vitamins, attending my appointments, sometimes I feel like I lose anyway. Something as simple as not keeping up with my little guy shatters a piece of me. I will never stop fighting, but damn it if I don’t come close some day’s to just saying FUCK IT! I can’t tell you how many day’s I come so very close to staying in bed. 🙂 Some how I crawl out and push forward, but it’s a close call.

Keep fighting my friends… Keep getting out of bed… I am there with you!

XOXO,

Undefeated Diva.

Still I Rise

One of my very favorite innovators and one of my favorite of her writings. I thought I would share with all of you. This was always something that helped me get through a tough day. May you all rise!

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Still I Rise

Maya Angelou, 1928 – 2014

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops,
Weakened by my soulful cries?

Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own backyard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

May this beautiful soul Rest In Peace.


XOXO, 

Undefeated Me!

Hydroxychloroquine/ Plaquenil Update!

Article below derived from Lupus Foundation of America’s Blog.

http://www.lupus.org/blog/entry/hydroxychloroquine-shortage-update-october-2015

Oct. 05, 2015

Hydroxychloroquine Update – October 2015

by Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator

Recently, there’s been growing concern over generic drug price increases in the news and on social media. We at the Lupus Foundation of America have felt and been enveloped in this wave of concern. Our organization has been tracking the cost and availability of hydroxychloroquine (Plaquenil®) since June 2014. Initially, there were widespread reports of shortages and difficulty accessing the drug, but now the primary issue is the spike in price.

The Lupus Foundation of America is aware that many of our constituents are unable to afford the high cost of the generic form of the drug, hydroxychloroquine. We are concerned that constituents may stop taking the drug or ration the drug without their doctor’s knowledge. This is can be very dangerous.

It is extremely important that lupus patients take hydroxychloroquine (Plaquenil®) as prescribed. Medication adherence prevents disease flares and other complications.

“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”

Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine.  All four generic drug manufacturers are no longer reporting a shortage and are meeting demand.  However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.

Here are some actions people with lupus can take to obtain the drug at a more affordable price:

  1. Speak to the prescribing physician about possibly finding a lower-cost alternative treatment option.
  2. File an appeal with your insurance company if the drug has increased in price from last year’s plan. This usually has to do with moving the drug up a tier in the formularies. The insurance company may agree to move the drug back down to its previous plan year’s tier, which can drop the cost. You can also speak to your insurance company to see if switching to a different plan is possible.
  3. Compare prices. Some people have noted that the brand name drug, Plaquenil®, is cheaper than the generic form of the drug, hydroxychloroquine, with their insurance. In addition, constituents can compare the prices at various retail pharmacies to find their drug at a lower cost. There are a few websites, like GoodRx, that can assist with this.
  4. A few websites with resources may also be of assistance:

The Lupus Foundation of America is sharing this information because we want to ensure that our constituents can access and afford the medications that they need. We are in the process of contacting the generic manufacturers that produce hydroxychloroquine to better understand why there was a shortage and now a significant price increase. Our Advocacy and Government Relations department is pursuing several avenues to address the problem.

We believe it is important for us to represent the lupus community and ensure that everyone understands why the prices of their drugs have increased so dramatically. If you have questions or need any information, please contact our health educators through this form, or by calling 1-800-558-0121

Best Lupus Blogs of 2015!

I am humbled to announce that Undefeateddiva.com has made healthine.com list for Best Lupus Blogs for the second year in a row.

When I initially started writing I did it to help people to not feel alone in their journey. I quickly realized I wanted to not only help but INSPIRE. I have had the most beautiful journey since. Thank you to healthline.com for seeing this and helping my vision come true by giving me a bigger platform to reach.

Check out the list here Best Lupus Blogs 2015

With love and humility,

Undefeated Diva

  

Beauty in truth…

There is beauty in truth, even if it’s painful. Those who lie, twist life so that it looks tasty to the lazy, brilliant to the ignorant, and powerful to the weak. But lies ponly strengthen our defects. They don’t teach anything, help anything, fix anything or cure anything. Nor do they develop one’s character, one’s mind, one’s heart or one’s soul.

José N. Harris


This could not be more true, today and everyday. This is a lesson I learn time and time again but as of late I have been drowning in the theory. The opening sentence in this spoke to me in a way that moves the soul, “There is beauty in truth, even if it’s painful.” I could not ask for a more beautiful life but it has come with some painful truths. The new journey I am on has brought with it some of thee happiest and most bittersweet moments in my life to date. To be honest with myself, the last several years has been derived of a series of decisions made both easy and some of the most difficult and gut wrenching. There is nothing more difficult then making a decision that not only effects you but that of your child. Decisions that are not small in magnitude, but life altering and will change the course of his life forever. In the end, I had no choice but to face the truth. To face that it would be painful and ever sobering. My decisions were not for the faint of heart. I stand a little stronger today and in those moments when I feel weakest I look at thee most beautiful little face and find my strength. 

So here is to the truth and to the painful beauty that often follows those truths.

Love, Laughter, and Happiness

XOXO,

Undefeated Diva

Keep your head up…

Never bend your head. Always hold it high. Look the world straight in the eye.

Helen Keller

It is not always easy to hold your head up in the middle of a storm For many reasons it’s easier to look down. The only reason I look down is because it is the path of least resistance. When you are in the center of a storm, the last thing you want to do is answer questions. To answer questions or cater to anyone else’s emotions, do they not see you are in need of your own TLC? So to me it has always been easier to keep trucking. Often times people take not holding one’s head up as a sign of an insecurity. I often wonder if these people ever stop to think, maybe we just don’t want to talk to you it has nothing to do with insecurities. I quite frankly am very secure in who I am. Keeping my head low has nothing to do with who I am or how I feel about myself.

SO, on with today’s lesson. I spoke to someone I haven’t seen since I was around 7 years old. He was a good friend of the family and he told me today that whatever I do to keep my head up. You would think I had never hear this before, for heaven sakes I give this advice all of the time. Today, it was a little different. Today it hit me differently. I was hearing this message from someone I had not seen in over 20 years but someone that I considered family regardless of the distance. He told me ” Life is going to throw you things and with each passing decade it will throw you more difficulties, but it is up to you to hold your head up through the storm”. It may not sound as profound as it was but it was one of those moments where I took stock of everything around me for fear of forgetting that moment. Maybe it was profound because it was advice not given to me by just anyone. Maybe it was profound because it wasn’t someone just shooting from the hip and giving me advice that didn’t know me from a hole in the wall. Either way it was profound.

In that moment I took stock. I realized I have been in serious self preservation mode for nearly 6 months and probably longer. My current woes are no more serious or important than the next person. Self preservation is not bad, but when you allow self preservation to be all you live well that is no longer healthy. So today I looked up for the first time. I realized I was not looking people in the eye’s any more, today I did. I realized that although I am in the middle of what is one of the toughest years of my life, that I need to look up and hold my head high. Realistically, how else would I see the beauty ahead?

Everyone remember:

Happiness can be found, even in the darkest of times, if only one remembers to turn on the light! 

Albus Dumbledore

XOXO

Undefeated Diva

Getting to know the new me…

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

Drake

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

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My Wrist Bling (Review)!

If I had my way, I’d wear jewelry, a great pair of heels and nothing else.
Jada Pinkett Smith

I love personalization… Anything with my personal touch or something sentimental has my vote!

Today, I received the most beautiful wrist bling. When I was first diagnosed, I felt like I was alone in the world on the never ending roller coaster ride filled of doctors visits and symptoms. The last 3 years have been filled with some of the most amazing moments… Today was one of them.

Last year I joined instagram and it I learned quickly the power of social media. I now never feel alone! I have a family constructed of the most beautiful and caring people in the world. In my lows I have sunshine and support, in my highs I have support and a team that would rival the olympic team.

Now, one of my beautiful Lupus Sisters makes some bling. I have seen so many of my other beautiful family members get her bling. I finally decided to jump in… and I am so excited and happy with the results.

Review:

From the first moment of interaction about the bracelet her customer service was impeccable. Foxxy took her time to explain the process in detail and took the time to ask in depth questions to get the concept of what I was looking to do. She asked questions, made suggestions, and allowed me to make a change before she sent the finished product.

Upon completion, she sent me the tracking information for my bracelets. They arrived so fast that I did not even get to the tracking information! When I opened the package, there was personalization everywhere. The personal touches and customer service were everywhere. When I opened the box, I was blown away. The quality was phenomenal. I initially had fears with the quality of a “stretchy” charm bracelet. I learned immediately that was not the case. Dare I say that my bling was better than the picture proofs she sent. When I put my bling on, the bracelet was heavy. The quality is superb. The color scheme was wonderful! Iw as so very surprised to find extra personal touches I did not see in the proof. There is nothing about the bracelets that don’t scream “I AM AMAZING and was made with love and care”. What I love most about my bling is that it was it is personal to me! It encompasses the essence of Undefeated Diva. (see photos below)

(The gloves signify undefeated)

So I say, if you are looking for impeccable customer service, personalized bling, and quality product made with love… I recommend http://foxxycharms.bigcartel.com.

 

Thank you Foxxy for my beautiful bling. I think I just found a great idea for christmas!

 

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Even the fiery advocate gets tired…

Man has got to know his limitations. Clint Eastwood

“Oh you look better”, “you don’t look sick”… Or the ever agonizing look of pity or question of whether you are faking it…

I was ashamed of myself when I walked out of the doors of my school today. Sunglasses on, bags on my shoulders, I just left after what should have been me waiting to speak to my advisor. See, because even the fiery advocates get tired of advocating sometimes.

Unfortunately, this semester of college has been one of my toughest. I have been in the middle of a flare up of epic proportions. Although I have my good days, those have been farther and farther apart. The good days are actually bad day’s that I have medicated myself, slept for 2 days prior to them, yet still take 2 hours to get dressed. Often times I wonder if I will even make it to class most Wednesdays, never really thinking about the on-line classes I can’t seem to wrap my brain around due to the epic brain fog. Today I had the option of sitting with my advisor, which happens to also be a current professor of mine. I sat while she spoke to another student and then it hit me. I have fallen behind in her class and here I was going to sit in front of her and discuss my future. Although my face had make-up on (miracles do happen), I was put together, and standing upright she could not see the turmoil and pain I was in. The impending migraine that was threatening a night of torture and the fact that the sheer touch of my shirt to my skin felt like shards of glass. Nor would she be able to tell that my body was threatening me with the possibility of passing out from the dizziness I have had for two days. So as I sat there and watched her speak to another student, I made the decision I was allowed to say I AM DONE… for the day and leave. For a natural born advocate like myself, it was a realization. The realization that I had “given in” to the pressure of stigma, that I talked myself into walking out when I hadn’t even given her the chance to talk to me. What I did do though, was show myself that I know my limits!

Every person has their limits. Today, I knew that I had reached mine. I knew that a look from her or too many questions would have turned me into an angry and defensive me. I would have been no advocate at all, I would have been a stereotype… So I left. As I felt defeat walking out the door, I felt no more as I drove over the beautiful bridge met by sunshine and clear waters in my town. I knew I had done the right thing, which was advocate to myself and for myself that today was not the day.

So the lesson for today… Is even the strongest of us advocates gives in. Sometimes it’s ok not to “advocate”, if you know that really you are causing more harm than advocacy.

XOXO,
Tired Undefeated Diva