The Universe has Spoken.

The Universe has spoken.
The other day I was having a conversation with a good friend after class.  Her dad had recently been diagnosed as a type 2 diabetic and had to start taking insulin shots.  She knows that my company (Qivana) sells a system with the FABULOUS success rates in treating type 2 diabetes with no chemicals. She also knows, however, that her father will not drink a shake as breakfast.  He wants to eat food.  Her sister is a nurse and the two of them discussed , "hey, wouldn't it be nice if..." (Just so you know these are the beginning words for any thought or idea that has radically changed society) "... There were people who came in your home and were trained in cooking for specific diets or conditions, like gluten intolerance or diabetes.  Like an in-home chef.

"Yeah that would be great." I replied.

Fast forward 3 hours later.  I'm at my condo preparing to leave for my nanny job.  I had no idea why but it was taking me longer than usual to get outta the house.  I knew I was running more late as minutes passed, but for some reason I wasn't in a hurry.  Which is really odd for me because I usually have intense anxiety when it comes to being on time.

Anywho, I finally leave the house.  I turn left out of my neighborhood and as I head toward the stop sign I see a guy walking on the side of the road, headed in the same direction as me.  
I could see he wasn't on a leisurely walk.  It was too cold for that and he was dressed in a sort of uniform.  From a restaurant or something.  Again, in no hurry, I thought to myself, "I wonder if he needs a ride."  

This thought crosses my mind most anytime I see a hitch hiker, but the reality is I am 5 feet 1.5 inches tall and a buck fifteen after a hefty meal.  And being in the driver side of a car doesn't leave much flexibility for a range of defense mechanisms.  So I go through these reasons, say a prayer for the person, and hope someone else with less risk and more
ability can help them.  I have to be okay with this.  I would be putting myself in danger otherwise.


Let me be clear: I am almost 26 years old and I have never picked up a stranger in my car, male or female......until two days ago.

I drove past him, going through my justification process and prayer, but when I reached the stop sign, I looked in the mirror, and then turned my head to look back at him.  I rolled the window down and shouted, "hey do you need a ride somewhere?"

"Actually I'm just headed to the Walmart".
Before I thought about it, I shouted ," yeah that's on my way hop on in!"

At this point there were at least two cars behind me that I was holding up.  Usually very sensitive to that sort of thing, for some reason I trusted that they were okay and no one behind me was in labor or rushing to the ER for any reason.

I cleared whatever debris was in the front passenger seat and he came to the side of the car.  As soon as he sat down and closed the door, I looked at him and I finally drove through the intersection.  Relief washed over me because his energy felt harmless.  As soon as the relief settled in, I thought to myself,  "What in the hell did I just do?" "What on earth could have compelled me to pick up a stranger MAN and put myself in close quarters with him?!"  All I could think about was that I kept getting feelings that it was right.  It wasn't logical, nor do I believe it was from this earth. Acts such as these are demonstrations of faith, according to my religious beliefs.  It's not logical, you just listen to the feeling and act on what it's telling you.  Even if you look crazy to other people.

If you are hoping for a gift, from Santa, God, or the Easter Bunny, you have to be prepared for stepping out of your comfort zone, in honor of what you're trying to manifest.

I made sure to let him know this was not a normal thing.

I asked where he was going.  He was on his way to the bus stop so he could go to work.  He worked at Cracker Barrel.  And he was a cook there.  My first instinct was "cool I could possibly recruit him for Qivana! (If he wants to make more money).  I was expecting him to say something entirely different, but shortly after divulging that he's a cook, he said "what I really want to get into is being a private, in home chef"

Holy Shit.

I literally responded with "You're f***ing kidding me."

Friends... Think back to the beginning of this post and my conversation with Mary!!

 "Hey, wouldn't it be nice if there were people who came in your home and were trained in cooking for specific diets or conditions, like gluten intolerance or diabetes.  Like an in-home chef. ?!"

"Yeah that would be great."

So I had that conversation just FOUR hours prior to picking up the first roadside traveler in my whole life, a male nonetheless.

After I explained everything to him, I was flustered and excited and said "Hurry get my number before we get there!!"

I told him I had no idea what this meant, where it would go, or what to do with it but it was placed on not a silver platter, but on a diamond studded gold leaf painted platter, sprinkled with gold dust.  It would be a disservice to the universe and to ourselves not to follow up and follow through.  Literally un-faith-ful. There would be zero faith in doing nothing with a gift like that.  Turns out my new friend also has a communications degree and went to culinary school.


The Universe has spoken.

What happened next? I profusely thanked the universe and remained in awe and wonder at the love I feel from the Universe.

What's gonna happen with Kyle?!  If you want to know what the result was, you have to

1. Leave a comment about an instance where you followed your gut even though it wasn't logical and you could have or did fave criticism for it, and how it went for you.

LOL - Learning to Own my Lovely.

I've always been told I'm attractive but never put much stock in it.  Looks can't do much for you anyway.  

“If you feel your value lies in being merely decorative, I fear that someday you might find yourself believing that’s all that you really are. Time erodes all such beauty, but what it cannot diminish is the wonderful workings of your mind: Your humor, your kindness, and your moral courage. These are the things I cherish so in you. I so wish I could give my girls a more just world. But I know you’ll make it a better place." -- Marmee, Little Women”
― Louisa May Alcott, Little Women 

 I once dated a man who told me I was nowhere near my "peak" and that one day I would learn to own how "lovely" I am.

The following story may come as a shock to some. To others, it may seem like a justification. For me, it's accountability.  I've recently decided to embark on a life path that many would call nontraditional or unconventional. After all, it's me! I am both of those!  Until now, I
have worked my way through my bachelors, I am about 3 semesters into my masters degree, and my master plan was to get my degree and then.....while I do, maintain faith that when I finish something will come along.  It always does.  I'm not completely delusional. I don't think money to support myself will just show up without any hard work.  

And supporting myself is very important to me. I've been doing so since I was 18. My grandparents help me with bills while I'm in grad school and it absolutely drives me bonkers.  I hate sending the email asking them, and I always ask for the bare minimum.  I try to earn
money through nannying and over the summer I would clean houses and cocktail waitress.  I've done it all. I'm not afraid to get my hands dirty. After all, I grew up on a horse farm cleaning stalls and throwing bags of grain and bales of hay.   I know what it takes to
earn money.

So back to this new plan.

Many of the people I go to school with have plans of completing their masters' and then working at an agency, or for an established practice.  This never appealed to me.
I always knew my life would not be a 9-5....but I didn't know exactly what it would look like.  

Recently I've had some trouble collecting on debts people owe me.  I know this time of year is tight for everyone so I've tried to be understanding.  There came a time, however, when the prospect of collecting money seemed nil and my dog needed food, so I got creative.  There was a best dressed contest at a country bar I had been to once. I decided to go for it. Someone told me that you could make $500 and honestly, what would I not do to make sure my dog has food?

Now, I haven't always been comfortable "showcasing" myself, or attracting attention for my looks. Quite the opposite in fact.  I was molested by my father when I was six, and always harbored a kind  of shame when it came to my body.  I also developed earlier than most
girls, and this attracted more of the attention that I didn't want.  It got to the point where I elected for a breast reduction at 19 years old.  It wasn't because of my back pain, although there was some.  It was the emotional pain; the isolation and disconnection I felt when
people would not look further than my chest.  There was so much more to me, so much more that I was proud of like my heart, my soul, and my values.

Oddly enough, even though I've never wanted to limit myself to being seen for my beauty, I've always had a sharp awareness for what was deemed beautiful by society, and I was able to find a formula that worked for me.

My junior year in college I started taking a medicine for chronic migraines, topomax.  This medicine is an anti-seizure medication and one off-label use is weight loss because it suppresses appetite.  After about 6 months, I had about 100 lbs on me and I looked gross.  I had struggled with anorexia in previous years, so I was overly sensitive to people thinking I was anorexic again.  I had overcome it, but I still looked sick.  Too big, too small. Too thick, too skinny.  The triangle had a talk and one of the members said, "you need to learn to love yourself and how that has nothing to do with the shell you call a body. It has to do with your soul."  That was 2009.  It's 2013 and I'm just getting to the point where I can say I love myself, mind, body, and soul.

I've grown enough in my love for myself, as a child of this universe, to know that the difference I'm going to make for humanity has nothing to do with my face or body, but with my mind and my heart.  Why then, is it so much easier to earn fast cash showcasing good looks?!  This is not my preference, just reality.  Women get paid thousands of dollars to model lingerie, compete in bikini contests and Sexiest Santa's Helper contests.

 So this is my conclusion.  I have performed many jobs that did not define me (tending bar is one).  They were fun, I got to meet great people, and they paid the bills.  Fast and easy cash, so I can use my brain cells for writing or researching.

 What if I could make money from Qivana, modeling, and contests? Then I could use the daytime to write and research and work!  I checked with my life coach to see if I was being lazy/delusional or if this was actually a good idea.  Turns out, she felt it was aligned too!!
I wanted to write this post because if it hasn't happened already, I'm going to be tagged in photos wearing lingerie.  I got paid to do a promotional shoot for a wonderful business called "Tastefully Taken".  It's a photography business that specializes in budiour photography, working with many brides to be.  The pictures may come as a shock to people, and they may question certain notions they had about me.  I wanted to have available, somewhere, my thoughts about this kind of work and why I was doing it.
I'm really proud of the way the pictures turned out.  It was an interesting and wonderful feeling knowing you helped to create a piece of art.  I definitely want to do another shoot at some point.  I know the difference I want to make in the world. I've always known there was a purpose for my looks and figure.  I hadn't figured out where they fit in to my life, but at some point I knew they were meant to help me get myself heard. I am excited because I feel they can help me sustain myself financially and meet amazing new friends.

P.s.  If anyone is interested in doing this type of shoot...as a gift, soul booster, or just for fun, I highly recommend Scott Sanders from Tastefully Taken.  I'd love to share my experience with you. Just hit
me up. :)

Cleanin' Out My Closet - Eminem Style

Cleanin' Out My Closet - Eminem Style

     I’m a huge Eminem fan.  That is the understatement of the year (in November, too!)  I love the rhythm and composition in his music, and when I decipher the lyrics, I fall in love.  He and I have been through similar trials.  I relate to the way he “processes” events, both cognitively and emotionally; in essence how he copes with life, comes out a better, wiser person with a better perspective... that’s what I relate to.  And because I know how hard it is, and how courageous one must be to do these things, because I know the amount of faith that someone has to have in something bigger than themselves in order to simply live through those experiences, I empathize with and admire him.  *I’ll be inserting lyrics from “Cleaning out my Closet” throughout the blog post, showing commonality between our processing mechanisms and thought trains.

      Whenever someone says “cleaning out” and “closet” in the same sentence, my brain is immediately primed to think of Eminem’s song.  It’s not the piece of his I know best, by any means, but I’m constantly reminded of it.  (This may be a sign from the universe that I just need to tackle my closet and get it over with, figuratively and literally.)

     Most people know I’m an open book.  I often wish I weren't as much so as I am, but it’s part of my soul make-up.  I can’t help it.  Needless to say, there are few “skeletons” in my closet.  This open book quality extends as far as mistakes I've made or indiscretions that plague my conscience.  And even though there are not many, there are some.

Yes. I’m going to share one of my skeletons with you.  I’m cleanin' out my closet – Eminem style.  

Quick Back Story and Then the Skeleton
For those of you who don’t know, I’m in Grad School.  I’m getting a Master’s in Counseling, specializing in Mental Health. I have to try extremely hard at school because I am a natural student but not receptive to most traditional schooling methods.  My second semester of Grad school I decided to cut off any and all communication with my mother, who has been a drug addict most of my life, but neglectful and emotionally abusive for my whole life. 

Now I would never diss my own momma just to get recognition

Take a second to listen for who you think this record is dissing

But put yourself in my position; just try to envision

Witnessing your momma popping prescription pills in the kitchen

Bitching that someone's always going through her purse and shit's missing

Going through public housing systems, victim of Munchhausen's Syndrome

My whole life I was made to believe I was sick when I wasn't

'Til I grew up, now I blew up, it makes you sick to ya stomach

Doesn't it?

When I did this I went through the same emotional roller coaster as someone whose mother died in a car accident.  I didn't eat, I didn't sleep, and I had to take two "incomplete"s out of the three classes I was taking, focusing on self-care and therapy.   

All this commotion emotions run deep as ocean's exploding 

Tempers flaring from parents just blow 'em off and keep going

The whole process of arranging the incompletes was gruesome, to put it politely. 

Have you ever been hated or discriminated against?  I have; I've been protested and demonstrated against

My advisor was very understanding and empathetic, but many other professors were not so much.  They had many reasons to be frustrated with me, and I understood this.  Like I said, not great with traditional education.  Well, I got through that semester, took the summer off, and am more than halfway into my third semester. 

Due to the skeleton I’m about to kick to the curb, I had an extremely difficult beginning to this semester.  I was absent/really late way too many times, I was missing deadlines and due dates, and frankly pissing my teachers off.

I was supposed to go to Thailand with my boyfriend this November.  We’d been planning it since April, and it would have been the first time since June we’d get to spend time together.  The day before he booked my ticket, my adviser told me that now was not the time to be asking for special consideration and take time off from school.  He said that the faculty had complained about me regarding tardies, absences, and deadlines, and I didn't look dependable, which could result in my not getting placed for internship, hence unable to finish school.  So, maybe we’re not going to Thailand!  That’s okay.  Thailand will be there.   And yeah it sucks that I can’t see Josh, but he’ll come home again in march so I’ll be okay.  

I maybe made some mistakes

But I'm only human, but I'm man enough to face them today

So from this meeting on, I considered myself under close watch from professors.  I bought two additional alarm clocks and a watch.  I went home and recorded all my due dates on a calendar.  I was going to try harder.  I could do this.

Well, that worked for a few weeks.  Unfortunately, my skeleton was relentless.  Sunday night, November 4, 2013: I lay in bed for hours, unable fall asleep the night before a test.  Frustrated and nervous about how this would affect me cognitively, at 5:30 am, I decided to stay up, afraid if I fell asleep I would not wake up in time for the test.  (This scenario is not an uncommon one in my life.)  I started reading, and at some point dozed off, waking up at 10:00 am.  My test started at 9:30 am and I wouldn't make it to the school until 10:30 am, an hour after my test had already started.

Thankfully my professor allowed me to start the test late; however, it was obvious he was frustrated.  He (with good reason) has marked me as someone who is frequently late/absent from his class.  And unfortunately I was sure he had decided this is due to laziness or ambivalence regarding my education, which is not the case at all.  So, after everything last spring and the beginning of this semester, I had a very distinct sense that showing up an hour late for a test would be the straw that broke the camels back.  I knew I had to do something.

Ha! I got some skeletons in my closet

And I don't know if no one knows it

So before they thrown me inside my coffin and close it

I'mma expose it;

Meet EDS

I knew I had to introduce them to one of my skeletons.  His name is Ehlers-Danlos Skeleton, Skeleton ED, Ehlers-Danlos Syndrome, or EDS for short.  I went straight home after my test and gave them all the run down in an email.  I've decided to share that email with you.  It’s extremely personal, but that’s going to change now.  Now I will figure out how to incorporate EDS into my identity.

The email I sent to all my teachers:(no the Eminem lyrics were not in the copy I sent to them)

Dear Faculty,

Today I had a very humbling, disconcerting, and disheartening experience.  After lying in bed for hours, I was unable fall asleep the night before a test.  I was frustrated and nervous about how this would affect me cognitively.  At 5:30 am, I decided to stay up, afraid if I did fall asleep I would not wake up in time for the test.  (This scenario is not an uncommon one in my life.)  I laid in bed reading, and at some point dozed off, waking up at 10:00 am.  My test started at 9:30 am and I wouldn't make it to the school until 10:30 am, an hour after my test had already started.

As an adolescent, and then young adult, I saw my mother’s academic, professional, and ultimately her life as a whole, crumble in part due to her disability associated with Ehlers-Danlos Syndrom (EDS).  As I watched her stay up late/oversleep, in “too much pain” to do the simplest of tasks, and miss important appointments or opportunities, I became frustrated with her because I believed she wasn't trying hard enough. 

I'm sorry momma!

I never meant to hurt you!

I never meant to make you cry; but tonight

I'm cleaning out my closet (one more time)

Thankfully my professor allowed me to start the test late; however I could sense his frustration.  He (with good reason) has marked me as someone who is frequently late/absent from his class.  Unfortunately I fear, he has decided this is due to laziness or ambivalence regarding my education, which is not the case at all.

Until this point, I have viewed my condition (EDS) as more of an inconvenience or annoyance than a disability.  Mostly because I look like an able bodied, energetic, 25 year old female to most everyone.  I don’t look sick.  I harshly judge myself for the way it affects my life and relationships, sure that if I just try harder it won’t get in the way.  Try harder to go to sleep.  Try harder to not pay attention to the pain.  Today, I've come to face a reality I’m not happy with; it’s not about trying harder.  Due to my condition, there are some things about my body I have little/no control over.  Moreover, these “things” ARE affecting my life and relationships.  

In counseling we talk a lot about advocacy.  Most people with EDS go mis/un-diagnosed for years, reaching forties and fifties before there’s an explanation for all their pain and difficulty managing their life.  In this respect, I consider myself very blessed.  Although I've been dealing with EDS my whole life, as a child I didn't know my symptoms were not the norm.  As a young adult I began seeking medical attention for chronic and random pain, insomnia, neuropathy, anxiety, and debilitating fatigue, among other things.  After 3 years of intermittent ER visits with no explanation, I started looking for information myself.  I decided that I could wait for the doctors to figure out what it was, or I could figure out what it was and find the proper specialists to help me.  I decided to become my own advocate.

In February I will go to a geneticist where they will test/diagnose me with EDS of a particular type (yet to be determined).  Only at this point will I be able to work with the office of disability services on campus, to make it officially known what accommodations can be made to ensure I can make the most of my time at University of Tennessee.

Because I don’t consider myself disabled, because I don’t have an official diagnosis, and because I thought I could try harder, I've refrained from alerting my professors about my condition, with the exception of my heart condition associated with EDS that I figured would become noticeable in class.  I didn't want to bring anything up that wasn't affecting school.  

Well, now I can see how severely it is affecting school.  So back to advocacy: I've decided to be my own advocate and take a step toward helping any and all involved in my graduate education experience understand what I have and how it affects me, in turn possibly affecting my education experience. 

Because people with lax joints fall along a broad spectrum, from those with joint hypermobility but only mild or no related symptoms to those more severely affected, and because each day is different, I’m going to refer to an article written by Alan G. Pocinki, MD, PLLC.  His article articulates different symptoms and complications of EDS.  I have made certain passages bold that detail symptoms I experience/areas I struggle.

(Because it’s so long, I put it at the bottom of the email.)

It matters very much to me that my professors and peers understand how passionate I am about my education and using it to make a difference in the world.  For this reason, I would rather be humbled in sharing this with you all instead of risk the possibility and probability of misinterpretation and misunderstanding of certain behaviors/characteristics I demonstrate.  I don’t look sick. I don’t wear my arm sling to school, or bring the TENS unit or heating pad I have to sit on most days.  I wanted to keep these things to myself, but my desire to help others is stronger than my desire to appear able-bodied.

Thanks for your time.

Ehlers Danlos Syndrome

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

Often, people who suffer from hyper-mobility syndrome are called hypochondriacs or lazy because they avoid many everyday activities, because these activities cause them pain.  Most of them don’t look sick and, as a result, friends, colleagues, and even doctors can be unsympathetic.  Furthermore, they may spend years unsuccessfully searching for the cause of their chronic pain and other symptoms because many doctors are unfamiliar with hypermobility syndrome and its complex set of symptoms.  Such long delays and lack of understanding can lead to frustration (with doctors and with daily life), anger, anxiety, and depression.

EDS can include a wide and diverse array of symptoms, but the muscles and joints are most often affected.  People with EDS often develop chronic joint pain and stiffness, most often in the larger joints; for example, the joints of the neck, shoulders, back, hips, and knees.  However, smaller joints such as the ankles, wrists, and elbows are often affected as well.

And there are even more symptoms.  Unexplained bruises often appear “out of nowhere.” Many people complain of dry mouth or constant thirst, often with a craving for salty foods.  They are uncomfortable standing for long periods, so avoid lines and like to sit with their feet up.  Many patients with EDS also have problems with their autonomic nervous system, the part of the nervous system that regulates circulation, breathing, and digestion.  This can lead to symptoms such as lightheadedness, palpitations, and digestive problems, and probably plays a role in difficulty sleeping and overall fatigue, which are also common complaints.

Problems affecting parts of the body other than the joints are referred to as the extra-articular manifestations of hyper-mobility. Lax joints are very often associated with increased tissue elasticity elsewhere in the body, especially in the blood vessels and digestive tract. In recent years, hyper-mobility also has been associated with a variety of autonomic nervous system problems.

The autonomic nervous system regulates all body processes that occur automatically, such as heart rate, blood pressure, breathing, and digestion. To compensate for stretchy blood vessels and increased venous pooling (too much blood collecting in over-stretched veins) most people with hyper-mobility appear to make extra adrenaline, which may account for the high-energy, always-on-the-go lifestyles of many hyper-mobile people.  Unfortunately, if you get too tired, your body responds by making more adrenaline, so you keep going, not realizing how tired you really are. It appears that as you get more and more run down, your body gets more sensitive to adrenaline, so the small amount you have left can produce the same response a larger amount used to so you still don’t feel tired even when you are. Even when you do feel tired, you may continue to “push through” the fatigue, collapsing when the adrenaline wears off. 

Years of not feeling, ignoring, or pushing through fatigue may be one factor in the development of illnesses like chronic fatigue syndrome.

Many of the autonomic nervous system problems associated with hyper-mobility are characterized by an “over-response” to physical and emotional stresses, which often leads to fluctuations in heart rate and blood pressure, as well as digestive and respiratory symptoms.  Sickness, pain, emotional stress, and even fatigue itself can raise adrenaline levels, and acute stresses can trigger adrenaline surges, leaving you jittery, anxious, and even more exhausted. Worse, such surges can trigger an excessive counter-response, causing nausea, sweating, lightheadedness, diarrhea, and of course even more fatigue. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound.

Perhaps the most common symptom of autonomic nervous system dysfunction in hyper-mobile people is orthostatic intolerance, or lightheadedness on standing. Tilt-table testing often reveals abnormalities such as neurally mediated hypo-tension (NMH) or postural orthostatic tachycardia syndrome(POTS), fancy names for different ways in which the body fails to maintain a stable heart rate and blood pressure when a person stands up. Increasing salt and fluid intake, and avoiding caffeine and alcohol, which deplete the body of fluid, may reduce such symptoms. It also helps to keep your feet elevated, wear support hose, avoid prolonged standing, and of course the obvious—if you get dizzy when you stand up quickly, don’t stand up quickly!

Because too much blood is pooling instead of circulating, people with EDS typically have cold hands and feet and low or low-normal blood pressure, in addition to lightheadedness on standing. Drops in blood pressure can trigger palpitations and racing and pounding of the heart. There is also an increased risk of migraine headaches, varicose veins, and hemorrhoids.

Unusual heart problems can occur. One of the most serious cardiovascular concerns in hyper-mobile people is an increased tendency for blood vessels to tear or even rupture, although this is primarily a concern for people with the more serious vascular type of Ehlers-Danlos syndrome.

People with lax joints are predisposed to many different kinds of headaches.Migraine headaches are very common, in part because many migraines are triggered by fluctuations in hormone levels or blood pressure, which can be increased by autonomic problems. Headaches from chronic neck strain also are very common and can often turn into migraines. In addition, severe autonomic problems can cause a dehydration or “hangover”-like headache, possibly related to inadequate blood flow. Uncommonly, looseness of the muscles that control the eyes can cause difficulty focusing and eye strain headaches. TMJ problems can also cause headache.

Hypermobility and Anxiety

The body’s tendency to overreact to stresses by making too much adrenaline can lead others to think that hyper-mobile people are “too sensitive,” “irritable,” or “anxious.” Patients themselves may notice this, saying, “I've always overreacted to little things. I can’t help it.” It is very important to recognize two things about this phenomenon. First, it is a physical reaction, so that counseling usually will not be effective in treating this type of anxiety. Similarly, adrenaline highs and lows may be mistaken for the mood fluctuations of bipolar disorder, but mood-stabilizing medications usually are not indicated. When medication is required, beta blockers, which block adrenaline, may be as effective with fewer side effects than SSRI’s like Prozac and Lexapro or benzodiazepines like Xanax and Valium. Second, while a feeling of anxiety can be produced by emotional stress, it is just as likely that such symptoms have a physical cause, most often fatigue, pain, or dehydration, and less commonly by a drop in blood sugar or blood pressure. Not surprisingly, researchers have found that anxiety and panic disorder are more common in hyper-mobile people.

Similarly, when hyper-mobile people try to fall asleep, the stimulating effect of their extra adrenaline may keep them awake. If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or an increased number of sleep-disrupting “arousals.” Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse.This vicious cycle can eventually cause serious disability.  Like fatigue and pain, many patients are not aware of just how bad their sleep is. Although some people are aware of waking often or of having frequent very vivid dreams, many will insist that they “sleep fine,” even while admitting that after sleeping 8 hours they don’t feel rested when they get up. One obvious reason for this lack of awareness is, of course, that they’re asleep, so they have no way of knowing that they’re not getting enough deep sleep or having way too many arousals. Sleep studies done in a sleep lab are very helpful in demonstrating the nature and severity of sleep problems, and in ruling out other sleep problems like sleep apnea and periodic limb movements of sleep, which can coexist with hypermobility-related sleep problems. Virtually every system in the body is strained when you don’t get a good night’s sleep.

Not sleeping well not only makes you tired and irritable and can affect your mood, it also affects mental functions like memory and concentration, and has recently been shown to be a major contributor to weight gain in some people. Besides treatment for sleep apnea and limb movements when these are present, medications specifically for hypermobility-related sleep problems are often helpful.

As mentioned earlier, one possible explanation for the frequent arousal and lack of deep sleep is that patients are making too much adrenaline at night, just as they often are during the day. Some patients unfortunately seem to make too little during the day, waking tired and dragging through the day, only to get a “second wind” of energy (or a “first wind” for many!) at 9:00 or 10:00 at night, just as they are trying to wind down and get ready for bed. Heart rate monitors showing increased fluctuations in heart rate and occasional sudden increases in heart rate corresponding to arousals and awakenings lend support to this theory, as does the observation that medication to block or offset extra adrenaline helps many patients get a better night sleep. Adrenaline-blocking medications include various types of beta blockers, while medications like Valium and Ativan work partly by raising the levels of calming chemicals in the brain to offset the extra stimulating ones. Also, since chronic pain is so common in this patient group, appropriate pain medication at bedtime is often essential to achieving a restful night’s sleep.

Primarily affects the musculoskeletal system. Loose joints cause increased strain on nearby soft tissues (muscles, ligaments, tendons) that stabilize them.  These soft tissues themselves are often overly lax, and because of their laxity and the increased strain on them, they are prone to tearing and spasm, leading to pain and stiffness around joints.  The pain may or may not be clearly related to any specific activity.  For some, any repetitive movement such as walking, lifting, or carrying can be painful.  Standing or sitting for any period of time can cause stiffness and pain, as can something as simple as cleaning a kitchen counter or bending down to pick up laundry.

Because of their role in stabilizing the trunk and head, the neck and lower back are almost always affected.  Chronic neck strain affects nearly every patient with EDS for two main reasons. First, the ligaments that are supposed to support the head are too loose and therefore cannot do their job well.  The muscles of the neck are forced to do more of the work of supporting the head than they are meant to do, so they become strained. 

Second, most EDS patients have shoulders that are too loose, that is the “ball” of the upper arm is not held tightly in the “socket” of the shoulder. Because of the weakness of the shoulders, almost any activity that uses the arm, including reaching, pushing, pulling, and carrying, pulls not only on the shoulder but also on the neck. For these two reasons, neck muscles are constantly being strained, and what little healing may occur overnight is promptly undone the next day. Remarkably, this process occurs so gradually that many people with JHS do not even notice it, and when asked they may say, “My neck is fine,” when in fact their necks are a mass of knotted soft tissue, soft tissue that does not feel soft at all!

Lower back pain also is very common in people with EDS, again for a number of reasons. As in the neck, the ligaments that should support and stabilize the spine and pelvis usually are too loose, putting extra strain on muscles to try to support the upper half of the body. Like the relationship of the shoulders to the neck, loose hips also put extra strain on the lower back to try to stabilize the pelvis. Among these muscles is the piriformis muscle, a small muscle at the base of the pelvis (in the buttock). When called upon to play a bigger part in supporting the pelvis than it is meant to, it can easily be strained.  Once strained, it may tighten up and pinch the sciatic nerve, which runs directly beneath it.The resulting pain, called sciatica, can be felt in the buttock and often radiates down the back of the leg. This condition, sometimes called piriformis syndrome, is often mistaken for a pinched nerve from a ruptured disc in the spine.

People with EDS do have an increased tendency to have disc problems, sometimes at an early age, because the intervertebral discs that help cushion and support the spine may be less rigid than normal. Softer discs are more prone to leak or rupture, allowing disc material to ooze out of the disc and pinch nearby nerves, causing pain. Disc problems in the neck cause pain down the arms, and discs in the lower back cause pain to be referred to the legs. Less often, tissues within the disc itself can break down, causing pain within the disc, which can be very difficult to treat.

 Some people with hypermobility also develop neuropathic pain, which may be felt as burning, stinging, tingling, shooting, numbing, etc. Sometimes such pain is caused by disc problems, but often it is quite localized or does not follow the usual patterns of pinched nerves. Conventional nerve testing usually is normal, so these symptoms may be attributed to psychological rather than physical causes. This type of pain also can be particularly difficult to treat.

As mentioned earlier, osteoarthritis occurs more rapidly in loose joints. Therefore, arthritis in the neck and lower back is another frequent cause of neck and back pain and stiffness in EDS patients.

Hyper-mobility also commonly causes pain in the hips, shoulders, knees, and elbows. The shoulder in particular depends a great deal on its ligaments for support, and when the ligaments are loose, there is extra strain on the soft tissues of the shoulder. When these tear, tendinitis often develops. Similarly, hyper-extending the elbows can tear the tendons on the sides of the elbow. Pain in this area often is referred to as “tennis elbow” and “golfer’s elbow.” In addition, many people with EDS suffer frequent ankle sprains, which like shoulder and elbow injuries, may take a very long time to heal because they tend to get injured again and again while they are trying to heal.

 Unstable hips often cause pain which, like neck pain, may go unnoticed for a long time, since the hip joint does not move around as much as the knee, shoulder, and ankle joints. Examination of the hip in people with EDS often causes them to cry out, “Ouch! I didn’t even know it hurt there.” Also, many people mistakenly describe pain from the back part of the hip joint as “back pain.”

The most common source of knee pain in hyper-mobile people is the cartilage between the kneecap and the knee. Because the soft tissues that are supposed to hold the kneecap in place are loose, the kneecap itself is often loose. After years of sliding around too much, the cartilage underneath the kneecap starts to wear down (a condition referred to as chondromalacia), causing pain - and sometimes a crunching or grinding noise – while kneeling, squatting, or climbing stairs. Osteoarthritis of the knee joint itself is not as common, but it can occur, especially in those who have done years of high impact exercise or those who are overweight.

Other joints that can be affected include the joints where the ribs meet the breastbone and where the ribs meet the vertebrae of the spine. Many people with EDS feel chest pain and tightness, and may even seek emergency care to rule out heart disease, when the source of their symptoms is the joints of the rib cage, a condition called costochondritis, or inflammation of the rib cartilage. In addition, the jaw, or temporomandibular joint (TMJ), is often affected by hyper-mobility. Just like other joints, looseness of this joint leads to strain on the muscles around it and wear of the cartilage in the joint. A variety of treatments are used for TMJ pain, but strengthening and stabilizing the joint offers the best hope for many for long-term relief.

Finally, there is an association between hyper-mobility and increased risk of osteoporosis, although it is not clear whether this is simply from inactivity because of pain or, more likely, that there is a specific defect in bone metabolism. The identification of receptors for adrenaline-like hormones in the bone suggests the possibility that loss of bone may even be related to autonomic nervous system dysfunction.

The treatment of musculoskeletal symptoms primarily consists of medication for pain relief, and exercise and physical therapy to relieve muscle spasm – in the short run – and strengthen the tissues around loose joints to stabilize them – in the long run. These are general treatment principles, which are more easily applied and more effective for some joints than others.

A brief word about pain: pain is not a good thing. “Toughing it out,” “putting up with it,” “learning to live with it,” etc. are not productive approaches to dealing with chronic pain.. Pain is not good for you. Pain strains your system, wears you down, disturbs your sleep, and makes you irritable and even depressed. Medication that relieves pain often does a lot more; it often improves sleep, concentration, energy, and mood. Be hopeful that with appropriate treatment you will gradually need less and less pain medication, but take it when you need it.

Avoid

·         high impact exercise

·         forms of stretching that involve grabbing a joint and pulling or pushing on it to “loosen               it up.”

·         heavy lifting/pulling/pushing

·         hyper-extending joints

Fibromyalgia is a common diagnosis in people with EDS. Once muscles around loose joints become strained and painful with daily use they may become more and more painful, until chronic unrelenting pain begins to disrupt sleep and cause fatigue and depression. Each of these symptoms reinforces the others. For example, depression can disrupt sleep, cause fatigue, and increase sensitivity to pain, setting up a vicious cycle of pain, fatigue, poor sleep, and depression, which is the crux of fibromyalgia. Hyper-mobility also may predispose people to develop chronic fatigue syndrome, which has much in common with fibromyalgia.

Congratulations!!!

If you made it all the way to the bottom of my skeleton!

One more thing, before I go.  The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. 

See what hurts me the most is you won't admit you was wrong

Bitch do your song - keep telling yourself that you was a mom!

But how dare you try to take what you didn't help me to get

You selfish bitch; I hope you fucking burn in hell for this shit

Remember when Ronnie died and you said you wished it was me?

Well guess what, I am dead - dead to you as can be!

She gave me this life.  What I do with it now is up to me.