Tag Archives for Systemic lupus erythematosus

Just get some sleep…

Me: “I am Exhausted”

Them: “Get some sleep. Rest. Oh just take a nap.”

If it were only that simple. There is tired and then there is the exhaustion that many of us with a Chronic Illness feel. It is the nausea inducing, body shaking, fever generating, limb weakness type of exhaustion. For me, my exhaustion can sometimes include breathing difficulties and neurological side effects such as dropping things, tripping (body imbalance), and fogginess. It is a concept that is difficult to grasp if one has not experienced it.

Sometimes resting or sleeping do infact help but more often than not it only places a bandaid on the situation. It is like plugging in your cellphone that is at 2% for 10 minutes to get just enough of a charge to make a call. You rest/sleep for 8 hours… and sometimes you have just enough energy to do just one activity. You save up all of your energy for one thing. We are not talking about saving up your energy for one big trip to Disney, no. I am talking about you sleep 8 hours to do something like clean the bathrooms or cook dinner. This is of course if you can get to sleep, as many of us are experiencing side effects from medications or in such pain we can not get comfortable.

I wish I was joking. I wish that everything I was saying was a harsh dramatized dream, but it is not.The last time I was experiencing this level of exhaustion I was being newly diagnosed. I have to admit that I have been very lucky over the years as I have been able to kind of gage when I was exerting myself and I would plan appropriately. I worked full-time, went to school full-time, and maintained some level of friendships. Now that I think about it, I am not sure how I did it… but I did. Now a days I can’t seem to make it until 3pm without needing to nap for just a moment. When I was working in an office, many of times I would take my lunch break and nap in my car.

I have been looking up some different shakes and teas to help with my symptoms. Think I will make one in the morning and see if it helps even a little. I’ll share the process! Stay strong my fellow spoonies. I am with you… Have a good night!

XOXO,

Exhausted Me.

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.

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…

Here and Now

Never let the things you want, make you forget the things you have.

 

For a dreamer and a natural born planner the struggle is real. A never ending battle to focus on the here and now. How often do we stake claim on a goal for the foreseeable future and blow full steam ahead, but forget to “stop and smell the roses”? Lately, I have been so fixated on the future that I have not stopped to look at what is right in front of me, and above all be grateful for it. I found myself transfixed yesterday in a moment that was both invigorating and self-actualizing. It was the moment I realized, time waits for no one. This is not a new lesson but one that from time to time I fail to keep in the forefront of my mind. As I stood in a moment with my son, standing in the grass of our front lawn I realized just how much I focus on things for my future that I want to give or do. Although there is nothing wrong with wanting to create what I believe to be a better and brighter future, I do see a problem missing out on moments in the here and now.

So with that I took off twirling and throwing my little man. Running around on the lawn and eventually throwing us both in the grass, worn out and gasping for breath (who would think I am only 30). In one simple moment, that smiling face brought me back to the here and now. The here and now to be grateful for that small moment. The moment’s we as people with chronic illness only dream about when we are in a hospital bed or bedridden from our diseases. In that moment, my son reminded me to live. Not in any way shape or form am I saying that I am fixed from this thought process, but that moment, a moment shared between mother and son transcends through every aspect of my life. Stay focused Christina… Take a moment and taste your coffee, smile at the passing company, and above all remember that life is here and now, be grateful. Tomorrow is uncertain for all but especially those of us fighting battles. Hell, today is uncertain. What I know is as I went to sleep staring at my son’s face, I thanked him for the lesson. He will never know the true depth of what he teaches me regularly.

 

Happy Monday Morning!

 

XOXO,

Undefeated Grateful Me

 

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!

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

  

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

I’m Fine Curse

A lack of transparency results in distrust and a deep sense of insecurity.

Dalai Lama

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Hello World!

How many of us know the statement “I’m Fine” all to well? Without hesitation I can say, I do! When you say it, how many of us are ACTUALLY fine? I know that at least 95% of the time when I say the words “I’m Fine” I am surely NOT fine.

Then why do we say it? Many have reasons I will not claim to know but let me explain mine. Having a chronic illness becomes routine to us Spoonies. I say routine in the most comical of ways. The never ending stretch of doctors visits, medications, side effects, pain, surprise events of the most random things your body does. When you have a chronic illness, it becomes apparent very quickly that you have to deal with any misgivings you have in order to help your family and friends to deal. It is a sad truth, but you have to be come Dr. House and a therapist for those around you. You would think that you are the one with the illness but if someone loves you they take everything that you are going through just as personal. Sometimes I can not deal with others emotions because I am just too busy dealing with my own. As selfish as that sounds to someone like myself, it is the truth and it is OKAY!

So some days, when someone that loves me ask’s “How are you doing today?” I say, I’m Fine. I’m not necessarily saying it because I don’t want them to know whats going on, but I am tired. If I told everyone the truth every time they asked me how I was doing, trust me it would get old. There is not one day that goes by that I don’t feel some kind of something going on with my body. There is not one day that goes by that I don’t know that I have an illness. So some day’s I like to say I’m Fine for ME! Hey, I’m FINE my people! I am alive, I am breathing, and I am mobile.

I won’t sit here and manipulate the situation and state that I have never used i’m fine to get someone out of my face. I also will not say that I have never used it as a defense mechanism, because quite frankly I HAVE! Have I mentioned that I am human? All in all though, saying the words i’m fine steam from many different reasons both good and bad. Unless you have a chronic illness you may not understand this. If you love someone with chronic illness this may make you mad, because you want to know the truth. Understand this, chronic illness is no laughing matter. Some days the shear thought of getting out of bed is brutal. Unless you understand that statement to the core, do not judge. Some days we just want to think we are fine, some days we don’t have time to answer 100 questions or take advice that was not asked for, and some days we use it as a defense tool to keep out everyone while we deal with our own misgivings and pain.

Remember just because we look “Fine” on the outside, does not mean we are. We are all in fact still human.

 

Love you my fellow spoonies!

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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