A December Update

I just realized that I've not posted an update in quite a while. 
Where am I now on this long journey?

Fall is here and Winter is around the corner.  As the temperatures dropped, my ICP (the pressure of fluid in my brain) climbed up.  I became more sick, experienced increased symptoms.  The vertigo became worse, the headaches are constant, the nausea is nearly constant, my memory is like swiss cheese, full of holes, and my vision is blurry and often doubled.  So, I started taking Diamox again.  It is a mild diuretic that is used to pull fluid from the body and it helps a bit with the symptoms.  However, it only helps a bit, not quite enough.  So, whenever I get around to calling my doctor's nurse, they are doubling my dose.  Yay for yucky side effects.

I've been trying to find a neurosurgeon that is at least within my home state who is not afraid of me and willing to take over my care.  Traveling has become too much.  I've not had much luck so far.  I found one who will care for me in a "shunt emergency" but that's it.  Its an uphill battle to get my primary physician to make referrals so that I can check out other doctors.  I'm not sure why.  It doesn't cost them anything.  And, when they finally give in, I have to wait months for that appointment.  My physician refuses to help me schedule appointments with more than one NS at a time.  They insist that I have to see one before they will help me schedule with the next.  Between the wait time for them to make the referral and the wait time to get in and see the surgeon, I may manage to see three in a year.  I'm only interviewing them, not asking for surgery!  Its ridiculous.
In the meantime, I do have a follow up appointment with my doctor in Maryland in February.  I'm not sure how I'll manage it, yet.  I've drained all of our resources this year with my surgeries, trips, emergencies, medicines, etc.  I no longer have backup plans.  I'll save what I can but it will pretty much take a miracle to fund another trip.

At this point, I don't really have new symptoms, just an increase in some of the old ones.  Of course, some problems were resolved with surgeries.  I'm guessing, based on my symptoms and limited knowledge, that I still need a little repair work.  We'll cross that bridge as we come to it.

For now, that's where I am.  There is nothing more exciting to report. 

The week that I can't remember

September is Chiari awareness month and also Intracranial Hypertension awareness month.  With that in mind, I'm going to tell you a story that is ultimately about both.

I don't know about you guys but I divide my life according to a timeline of memories.  There are the things that happened as a kid, the things that happened before Paul (my hubby), life after Paul, life after kids, events before and after college, events that happened while I worked ICU, life after EDS, etc.  Its just how I remember things.  And now there will forever be that notch in my timeline called "That Week".  I remember very few of the events during this particular week or even during the time directly after.  But, I'm going to try to break it down and make a record of it just the same.  This will be a combination of things I do remember, things that Paul has told me, things that friends told me and texts and emails that I've went back and read. 

"That Week" actually began on Friday, April 25th.  This is the last day I truly remember for a few weeks, actually.  For a while I'd had symptoms of intracranial hypertension (IH), a comorbidity to Ehlers-Danlos, chiari malformation and all of our other fun disorders.  I'd been on medications like Diamox and Lasix for a while but we really didn't know how serious my illness was.  I'd never had a lumbar puncture or ICP monitor to actually check.  So, on this Friday I was scheduled for one.  It was fairly simple.  I went in to the outpatient center, signed in, was prepped then put to sleep.  After the procedure I was told that my opening pressure was 60+.  See, our spinal fluid moves at a certain pressure that can be measured just like our blood pressure.  That pressure is usually associated with the volume of fluid or abnormalities that obstruct it.  A normal pressure is around 5-15.  Anything over 20 can be diagnosed as intracranial hypertension.  Pressures in the 30-40s can cause significant damage, pain, headaches, blindness.  Its not often that we hear of pressures that are higher than that.  Mine was one of the highest that my surgeon had saw and he's done this for 30 years.  The tool used to measure the pressure only goes to 60.  My fluid reached that mark and kept going so we don't know how high it was.  That scared me!  He drew off quite a bit of that fluid, dropped my pressures to normal, did a prophylactic blood patch and sent me home. 

That night I was fine.  I was cautious with my activities, used my hated wheelchair.  That night we stayed at the motel (my surgeon is in another state) and the next day we traveled home.  I don't remember the trip home or much after.  Paul says that I started acted odd that morning on the drive home.  He says that I slept a lot more than usual and was a little "off".  He thought it was a result of our trip and all I'd been through.  According to him and verified by my texts to friends that I've read, I was "off" all weekend.  I slept almost the entire weekend.  When I was awake I cried with a headache, I talked out of my head then I slept some more.  If you know me, you know that I don't sleep until I have to.  My phone shows that I texted and emailed my surgeon on Sunday to tell him that I had the worst headache of my life and that I was hallucinating.  Still, we tried to wait it out and see what was happening.  Maybe it was low pressure or a spinal leak, maybe my body was learning to adjust to new pressures.

Then Monday came.  Monday was one of those days that changes your life.  I remember a few things.  Paul had to go back to work that morning and left me with my oldest daughter.  I woke up very early with an even worse headache.  This was a 12 on a scale of 1-10.  I felt like my head was being clamped by a vice and crushed.  I remember that.  I remember taking strong pain killers and getting no relief.  Then the vomiting started.  I took Zofran and it didn't help.  I knew something was very wrong.  I woke my daughter and made her come sit with me.  She and family has helped me fill in the blanks from this day.  She came in and sat with me.  She made me oatmeal and tried to feed me.  Apparently she couldn't keep me awake.  I kept passing out, over and over.  At some point she snuck off to call her dad and tell him that something was very wrong.  He said he was coming home to get me, we were going back to my surgeon and the hospital.  My daughter got me up, helped me get to the shower.  After, she brushed and dried my hair for me.  She packed my suitcase for me.  Just thinking of that now breaks my heart.  I can only imagine how scared she was.  She watched me, kept me talking to her and got me ready to leave. 

Paul loaded me into the car, stopped and picked up my dad and we were off.  I don't remember that.  I do remember showing my dad how to work my blood pressure cuff, how to check my vitals and showing him what meds I was taking, all just in case.  We made a very long trip to another state to see my surgeon because no one local would understand what was wrong with me.  My disorders are too complicated.  Apparently we drove for almost 10 hours.  I was unconscious most of it.  I woke up to cry, hold my head and try to throw up.  That was it.  I don't remember those 10 hours.  It was Monday night when they checked me into the ER.  Paul says that they gave me a lot of meds and I finally seemed a little more stable and had less pain. 

I saw my surgeon the next morning.  At first, he wanted to do an emergency decompression.  Then he decided to do a VP shunt (a shunt that goes in your brain to drain fluid).  Then he decided to put in a lumbar shunt (this shunt goes in your back and drains fluid).  This is what I eventually got.  I was in the hospital for one week, Monday-Monday.  I remember seeing a few friends, I remember talking to dad and Paul a couple of times, I remember seeing my doctor once.  That's it.  On Thursday, May 1st, they took me to the OR and put a lumbar shunt in me.  This is a small rubber tube that is in my spinal column.  It runs around my body and drains excess fluid into my abdominal cavity where my body absorbs it and moves it out.  I don't know what day we left and came home.  I don't remember much for another couple of weeks.  I was very sick during that time.  I made a bed on my couch so that I could be with everyone and I didn't move for those two weeks or so.  I was still beyond sick.  I was still hallucinating, still sleeping all day.  Paul has told me that he was very worried about me during that period.

Eventually my body healed some.  Or adjusted.  I don't know which it was.  I'm better now than I was then.  I'm not well but I'm not seeing some of the crazy things I was then! I'm not sure that the shunt has done much for me.  I still have a lot of symptoms of high pressures.  I'll live with it for now, though.  I still don't remember much of that three week period but my dear husband fills it in for me.  I know in my heart that I am lucky to be alive, that I beat the odds.  With pressures that high then the complications that followed, I should be gone.  Those aren't the kind of things that people survive.  But, here I am to tell you about it now.

And that is the long winded story of the week (or three) that I can't remember.  That definitely becomes a landmark on my life's timeline.  Things will now be remembered as before I tried to die and after I tried to die.

The Five Stages of Grief

If you were ever a medical or nursing student, or majored in any other subject that required a psychology class, then you've heard of the five stages of grief.  We are taught that these are the stages that we go through when we lose a loved one, when we face death.  However, we are not always taught that those who live with chronic disease also go through these phases.

What are the five stages of grief?  They are Denial, Anger, Bargaining, Depression and Acceptance.  We can go through them in any order, we can go through some stages more than once, we make take years to move on to the stage of acceptance.

I have so far moved through denial, anger and depression and acceptance.  I constantly deny my illness and disability.  When I hit this one hard I will usually try to work too much.  I will clean, scrub, cook horrific amounts of food, craft, shop, work outside, anything to deny that I am sick.  I'll go until I can't.  Until my heart won't let me.  Until my body begs me to stop.  Until my head is pounding.  And, for a few days after, I have a hard time going at all.  And then I get angry.  I'm mad at the doctors for not fixing me, for taking so long to diagnose me, whatever reason I can find.  I get mad at my family for not pitching in more, not listening, not taking me serious.  My poor husband bears the brunt of this stage.  Then, I'll often become depressed.  I become afraid of dying, upset about the things that I can't do.  I have to work on who I am again, find my value.  Then, for a few days I move into a stage of acceptance and am at peace with who I am and where I am.  And before long I change and it starts all over.

So, what I want you to know is that these feelings are normal.  If you are dealing with a terrible illness, if you've lost a family member, if you've been through a huge change in your life, then you'll go through these stages.  Recognizing them helps you to understand what you are feeling and why.  It helps bring a bit of perspective so that you can better live with it and maybe move on.

I never knew you were sick....

How many of us have heard that?  If you have a chronic illness, a genetic anomaly, then you've probably heard it at least once.  I never know how to reply.  Should I feel defensive?  Should I try to explain how I was born with EDS but wasn't symptomatic?  I try to be honest about these things so that people learn from it.  There is no easy or right answer to this comment.

See, Ehlers-Danlos is part of me.  Its in the very cells of my body.  Its in my genetic makeup.  As a kid, I wasn't sick.  But I was bendy.  No, I was freakishly double jointed.  I could bend in all kinds of neat ways.  I was also horribly clumsy.  I ran funny and remember kids laughing about it.  When I was in elementary school, gym class was torture for me.  Our gym teacher was athletic and insisted that we tumble, roll, somersault and cartwheel our way around the gym.  I couldn't.  Some bendy people make great gymnasts but not me.  My body doesn't hold together and move the right way and I could never do it.  Poor Mr. Lunsford could never understand.  I know that he thought I wasn't putting in effort.  I wish that now I could go back and tell him the truth of it.

I had horrible headaches all of my life but we didn't know that was anything more than just that.  Headaches.  They called them migraines.  They blamed them on inheritance (my dad has them).  They put me in glasses for the mild farsightedness and astigmatism and said it would help.  That's all that anyone did for headaches when I was a kid.

When I was a teenager I began experiencing hypoglycemia.  My blood sugar would drop severely.  I didn't eat too well so I'm sure that contributed but much, much later in life I learned that I my adrenal glands don't work correctly and low blood sugar is one of the signs of that.  We didn't know all of this, then.  I remember a doctor telling me once that its just low blood sugar.  When I feel it coming on to eat a protein and carb combo snack. He also told me that it would switch and become diabetes later in life.  He was wrong.

As I moved through my 20's, I started to become more symptomatic, lived with more pain.  I wasn't diagnosed with EDS until my mid-30's, after my daughter.

So, yeah, many people had no idea that anything was wrong with me, including me!  But, it was.  I was born this way, as were most of my children.  We may look normal, we may act normal sometimes.  That's why they call so many chronic disorders an "invisible illness". 

The Hardest Places to Live in America???

Tonight, my entry is not about chronic illness, EDS or any of the normal things.  Tonight, I want to talk about home.

I read a news story about some of the most difficult places to live in the United States.  My small corner of Kentucky was on that list.  They considered the median income, the life expectancy and unemployment rates.  So, I'm going to talk about this.  After all, who is a better resource for the truth than someone who has lived here for 37 years, someone who has written many community assessments in grad school about this region?  Many people in other parts of the world do not understand the culture, the lifestyle, here.  They do not understand how Appalachia has been suppressed, deprived and forgotten. 

First, lets talk about the income.  Now, the median income in Jackson county, Kentucky varies, according to the source that you use.  According to the Census Bureau, the median income is about $22,000.  Lets give you something to compare that to.  The median income in New York City is $51,000.  Our average income is low because there are few employment opportunities.  In Jackson county there are a couple of very small industrial settings, and the occasional gas station and restaurant.  Because of the isolation of these mountain towns, industry does not settle here.  If they do settle, there is no competition so they can keep wages at or near minimum wage.  Here you have the cause of low median income AND high unemployment rates.

If the median income is that low, then of course the life expectancy is lower.  The people in this area are not as healthy.  If you are budgeting $22,000 to pay your bills, your mortgage, insurance, medical bills, etc, then how do you afford healthy food and proper medical care? Our utilities are not cheaper, our medical bills are not cheaper and our insurance is actually higher!  Food is not cheaper here.  Some things are even higher because of location.  So, lets say you have a family to feed on an extreme budget.  A bag of oranges is $7 and a bag of chips is $2, a gallon of 1% milk is $3.50 and a gallon of kool aid is just over $1.  Your ultimate priority is to ensure your children have food and drinks.  You don't want them to be hungry.  The fruit and milk would cost just over $10.  The chips and kool aid are just over $3.  What choice will you make?  Buying the unhealthy choice means that you're budget will stretch a little farther to cover a little more food.  A poor parent can't worry about the long term consequences.  They live in the Now.

These same people may have a more difficult time finding ways to exercise.  There are no gyms, no walking tracks, no YMCA.  You find a way to work out at home, usually.  This is more difficult.  Even walking is a difficult option.  Many of us live on single lane country roads.  You may be taking a huge risk walking out those.

Health care....if you can't afford groceries, you probably can't afford doctor's bills.  Many have no insurance.  I don't care what the Affordable Care Act says.  It is not an affordable option for these people.  Many, many times I cared for patients in the hospital who were admitted and readmitted because they had no way to pay for the medications that they needed to remain healthy and functional.

I could write a book about the problems the people of Appalachia face.  It is a difficult place to live.  But, most of us don't know that.  This is home, this is the life that we know.  We are a hardy people.  And, let me tell you, there is plenty that this story doesn't tell you.  It doesn't tell you about the clean fresh air that we have here.  It doesn't tell you about the open fields, the beautiful forests, the lakes and rivers.  It doesn't tell you about families that stick together, friends that sit on front porches or neighbors that check on each other. This story paints the typical portrait of Eastern Kentucky.  I've been a few places and, let me say, no where is like Jackson county.  This is home.  So, maybe, instead of trashing and bashing our area, people could take a little time to understand it.  And, maybe something as big as the New York Times could help find ways to help, to spotlight us and our plight, not stereotype us.

Charity starts at home

I've not posted anything in a month but tonight I'm thinking about something.

Fundraising.

 

That has been on my mind.  I don't know what its like for other people with other chronic diseases ad won't pretend to.  I only know what its like for us, the EDSers, the chiarians.  There is an order to the things that happen to us.  We get sick.  We search for years while doctors tell us we aren't sick, we are fine, we are misdiagnosed.  Finally, we find that one doctor who puts the puzzle together and sets us on the path to more diagnosis.  We learn that we have a collection of rare disorders.  We go through denial, anger, grief, more anger and sometimes, if we are lucky, acceptance.  Then we learn that there is no cure, there are only medicines and surgeries to repair the damage to our bodies.  Next, we begin the hunt for a neurosurgeon that knows what to do to our broken spine, skull, brain and nervous system.  We finally find others like us and connect and learn that there are only a handful of surgeons in the world that know what to do to us.  Going to the right surgeon, one who understands our complications, can mean the difference between life and death.

 

 

So far, so good, right?  We know what we have, we know what we need to repair our bodies and we've found the doctors that know how to save us.  Now for the problem.  These doctors are most often hundreds, if not thousands, of miles away from us.  Seeing them means we need to pay travel expenses, motels and food.  We need specialized tests, sometimes.  Then comes the surgeries.  Often our miracle doctors are not contracted with insurance.  This means that we don't get to roll in for surgery and pay a deductible or a copay.  We usually have to pay deposits in the thousands.  Its worth it to live, right? But, how do you pay so many expenses and deposits if your sick and can't work?

 

This is where fundraising comes in.  This is the biggest obstacle for most of us.  When you've lost so much, your health, your income, your independence, how do you let go of your pride as well?  Its so hard.  We were workers, achievers, go getters.  Now, we are beggars.  This was nearly my breaking point.  I was always proud of my strength, my independence.  For each surgery I have had, though, I've had to ask for and accept help.  It kills a piece of you, eventually.  But, its better than letting the disease kill all of you.  Sometimes a very kind person hosts a fundraiser for you just as someone did for me last year.  Sometimes we fundraise online (see my link in the top right corner).  Sometimes some angels out there leave a check in your mail.  We learn to swallow our useless pride and say thank you to these great people. 

 

How much is too much, though?  I have had three surgeries and  many, many trips to MD to see my surgeon.  I still need another surgery if he will do it.  I still need at least one or two more trips to MD.  I can't drain my friends, though.  I can't work, either.  So now what?  Let this take me or beg some more and deal with my suffering soul later? 

 

This, my friends, is what its like to be us.  We want to live and will ultimately do whatever it takes.   When you give money to charity, think of those who might not live without it.  And think locally if you get the chance.  And know that those like us, those who know what its like to try so hard, will often pay it back or pay it forward.  Just saying....                                                                                                                                                                                                                                                                                                          

A different kind of Mother's Day

All of our lives we are shown perfect mothers.  I grew up watching the Brady Bunch, then Growing Pains and Wonder Years.  All of these had different kinds of moms but they were all perfect.  They were self sacrificing women, full of infinite wisdom and they made all of the right choices for their children.  Their homes were spotless, their meals were on time.  They balanced everything and still had time to do their hair and makeup.  More than anything, I wanted to be one of those moms.  I wanted to be perfect.  I wanted to give them everything, to do things right, to have healthy meals and no dust bunnies.  But, reality doesn't work like that.

Today, I am thinking of all of the time that I lost with my kids by trying to be perfect.  I had my kids while I was very young and very broke.  I tried to spend time at home, cooking good meals, cleaning up after them, watching episodes of Barney and singing ABC songs.  But, we were poor and I felt like they deserved so much more.

While they were all tiny, I started college.  I spent a lot of hours in class and at home doing homework. We ate a lot of pizza and my house was not clean.  I started working weekends so that I could pay a babysitter during the week.  There was no way around that.  I was sure I was doing the right thing.  We'd all sacrifice a little time but they'd have a better life.  So, it took me forever but I eventually got that nursing degree.  I thought that I'd shown my kids how important an education was, how they can never quit.

Then, we started the next stage.  I was a hospital nurse.  This means that holidays and weekends don't exist.  I worked all that I could so that they had better clothes, better shoes, more things.  They had vacations, trips to the theatre, dinner out once or twice a week.  These were things they couldn't have had before.  But, the sacrifice is that I worked holidays, some birthdays, lots of weekends.  And, again, I thought it was the best thing.  It meant that I'd be able to help them more as teenagers and adults.  I'd be able to buy cars, help with college, loan money when they moved out. 

The world has a way of flipping everything over, though.  A year or so ago, I got sick.  And I got worse and worse.  Eventually, I had to stop working.  My treatments and surgeries have drained all of those resources that I was saving for my kids.  Now, I am home with my kids.  I don't miss holidays and birthdays anymore.  But, I'm broke again.  And I'm not able to do much.  They have to watch me suffer, watch me change.  They stay behind while I'm in the hospital. They wait with me to see what's next. 

So, I'm looking back at all of the good intentions that I had but all of the time I lost.  It doesn't mean that I did anything wrong.  Or that I did it right.  I'm not sure.  I guess there is an in between there.  I'd give anything, now, though, if I could have those missed days back.  I'd give anything to remember, now, how it felt to have my babies sleep in my lap.  I wish that I could remember a time when we weren't rushed to the next moment.  And, I know its not just me.  I guess that this is how the world is now.  We are the new Carol Brady's. I can look back, though, and tell you to hold on tighter.  Take more pictures.  Let your babies sleep with you a little longer.  Don't push yourself or them so hard.  In the end, it doesn't make everything better.  And all of that time can never be reclaimed.

Happy Mother's Day to all of you mothers out there, no matter what kind you are.  Loving them is the important part in the end.  Make sure that they know it, no matter how you do it.

Drain my Brain, please!

One of the complications that many of us EDSers/chiarians deal with is high intracranial pressure.  The cerebral spinal fluid accumulates in our brain, builds up and puts too much pressure around brain tissue.  There are different treatments, depending on the cause.  For some, having surgery to correct whatever is blocking the flow will lower the pressures.  For some, medications such as diuretics will lower the pressures.  And, for some, shunts are inserted to drain the excess fluid and keep the pressures down.

I have high intracranial pressures, also known as intracranial hypertension (IH).  I have too much fluid circulating in my brain and its making me more sick.  I take 2 different medications, Lasix and Diamox, for this.  There are plenty of risks to both of these meds.  And, there are side effects that come with Diamox, including neuropathy, that drive me crazy.  But, I'd rather have neuropathy in all of my extremeties than deal with high pressures.  Why?  Let me tell you what it feels like when the pressure is up.

Have you ever had a migraine?  One of those miserable headaches where you feel every heart beat and want to puke and just need a dark room?  That's sorta what this feels like to me.  I get a headache.  It starts like a migraine.  But, then it grows.  My entire head pulses.  It feels like something is pressing against my skull, my face, from the inside.  Eventually, I have trouble holding my eyes open.  I can't stand to eat and I want to puke but know that would make me worse.  I have a lot of trouble thinking clearly.  My reflexes slowly leave.  As it gets worse, this "migraine" moves through my body.  Everything else starts to behave a little bit wrong.  My heart and vital signs are affected, I breath much deeper, I develop tremors and twitches.  It starts to feel like I really am dying.  Or, hurts bad enough that I want to.  I've tried everything from migraine meds to pain pills to ice and heat and dark and sleep.  Nothing fixes this pain except one thing....diuretics.  Pills meant to pull the excess fluid from your body.  They move some of that fluid from my body and my pressures come down and I can function again. 

So, when you hear mention of someone's pressure in their head, this is sometimes what they are talking about.  High intracranial pressures, aka intracranial hypertension, aka idiopathic intracranial hypertension, aka pseudotumor cerebri. 

Why Maryland?

I live in Kentucky.  When I tell people that I travel to Maryland for care and treatments, they look at me pretty funny.  Its rare that anyone asks me why, though.  Oh, they probably ask behind closed doors.  But, they don't ask me.  No doubt people have said things about the costs of what I do, how I could afford it if I did it here, what kind of doctor I see that requires so much money.  So, I'm going to explain it all.  I'll tell you why I, and a whole lot like me, travel very far to do what we do.

If you've read some of these blogs or know me, you know that I have Ehlers-Danlos, chiari and a host of other disorders.  Before you knew me, did you know what Ehlers was?  No?  Its likely that your physician didn't either.  Ehlers is a multi system disorder, though.  It affects my skin, bones, heart, GI system, nervous system and more.  So, what do I do if my doctor doesn't understand it and your doctor doesn't understand it?  I have to look for one that does.  Most of us EDSers have been on that mission for years.  We find doctors that say its only a joint disease, doctors that say we shouldn't have pain with it, doctors that say it has nothing to do with our heart, our thyroid, our brain.  Some say its a somatic disorder, meaning its imaginary.  Some say there is no treatment.  And some just refuse to discuss it.  I've met most of those.  I called tons of doctors between home and Ohio just looking for one that could help us.  I found a primary who knows more than some but still not everything.  She's a great person but I have more needs than she can deal with.  I found a geneticist in Cincinnati that gets it but it takes months to see him and he doesn't manage all of our care.  Still, he and my PCP were enough if EDS had been my only problem with no complications.

Then, one day I learned that I had chiari.  A piece of my brain was falling into my neck and no one understood that.  I'd probably need a neurologist so I called them.  I couldn't find any who would treat me.  Some didn't know what it was, one said everyone has it.  I saw one doctor who said my chiari was caused by my fat.  Wow.  I'd gotten so fat that the adipose tissue must have ran out of room and been shoved up into my head.  Maybe that's what forced my brain into my neck.  I kept calling people, reading doctor's online bios, researching things on the internet.  And that's how I heard of Dr. Fraser Henderson.  I was told that he was the greatest neurosurgeon, he specialized in chiari, he understood EDS.  BUT he was in Maryland.  Google maps told me that Maryland was 600 miles from me.  No way was I traveling that far to see a doctor.  Yeah.  If you get sick enough, you will eat those words.

I continued to decline, lose some muscular function, have more neuro problems.  I saw a dead end coming with my job because I was becoming so ill.  So, the hubby and I discussed it.  Over and over.  I know I made him crazy.  But, eventually, we decided we would go to Maryland.  We'd make it into a vacation.  I'd see this miracle performing doctor, the kids could see DC, maybe travel to the beach.  One day last July, we packed up a rental truck and went to Maryland.  The trip didn't turn into the vacation we planned because this doctor found things wrong that no one else had and ordered more tests and evaluations.  I cried at that appointment and I never do that.  He is the most compassionate doctor.  He understands more details about EDS than I do and I have it.  He found all of my problems within an hour.  I was in shock.  It wasn't long before my first surgery was scheduled with him.  And then another one.  Those surgeries gave me back the use of my legs and arms.  So much of my pain was gone.  He fixed what others didn't acknowledge.  That's worth traveling so far isn't it?

Most of you know that we've worked hard to raise large amounts for deposits.  There is a reason, though.  Yes, he requires large deposits such as the $4000 I had to pay upfront for my tethered cord surgery.  But, he is an out of network provider with my insurance.  That means that after they pay him, he can balance bill me the rest.  All of you know how much that can be, right?  But, he cuts us slack.  If we pay the deposit, we don't pay him another dime for that surgery.  We don't come out in dept.  We save thousands and thousands in the long run.  And, we have the privilege of working with a surgeon who saves us, not butchers us.

This month I go back to see him again.  I have to stay a few days longer than we expected.  I have to have more tests ran.  But, this time its all relating to my brain.  Once again, we can't afford this trip but it has to be done. I much prefer to suck up the cost, beg a little, give up a lot and live.  Chiari kills.  I trust him to keep me alive. 

Overachievers 'r us

Why do we all feel the need to overachieve?  We push ourselves so hard and miss out on so many parts of our life.  I went through nursing school when my kids were very young and now I look back and see how much I missed.  But, I was doing it for the good of my family.  I was doing it so that I could give them a better life. 

Now, I am in grad school, striving to be a nurse practitioner.  It doesn't matter that I'm not well enough to work now.  I have hopes that I will be, eventually.  Still, I have bulldozed my way through school while I was sick.  I have held on, with a 3.5 gpa I might add, through 4 terms and 2 major surgeries.  I know that I'll need my brain surgery, the decompression, soon because I am getting worse.  I am completely torn about taking a break from school for it.  Why?  Why would I not automatically put myself and my health before my education?

Lets list some reasons.
I feel like I am a failure.  I feel like a quitter.  I feel like I'm letting people down.  I feel like people will see how weak I am.  I feel like I have to prove myself.  I feel like a lazy bum. 

Does any of that make sense?  No.  My logical brain knows that it doesn't.  Yet, those are the hang-ups that I have.  And, I bet a lot of people know what I'm talking about.  I bet a lot of people push just as hard as I do.  So why do we do it?  Why do we have to be the best?  Why do our kids have to be the best?  Why do we expect perfection today? 

I've got to try and learn to take care of me first, family second and then school.  Time to figure out and apply my priorities.

Zebras AND Pandas?

My body has become a zoo.  Zebras and Pandas everywhere.  I bet you wonder what I'm talking about.  Think I've taken too many meds or have started tipping the bottle.  So, I'm going to explain why you'll find more and more of these black and white animals around me, on me, in my house, etc.

Most don't know that a Zebra is the nickname for a person who is a medical mystery.  In medical school, or nurse practitioner school as my case is, you learn a saying.  I remember reading it in one of my books during my very first term of grad school.  It goes something like this:

If you hear hoof beats think horses, not zebras.

 

 

What they mean is, when a patient comes in with a complaint, look for the easiest and most obvious reason.  Don't get excited and waste time and resources looking for rare diseases.  Those of us with Ehlers-Danlos use the zebra as our sign.  Its on our awareness ribbons, we tend to collect zebra patterns.  We have a rare disease.  If a physician isn't looking close enough, they will see pieces.  A fluctuating or high heart rate.  Chronic pain.  Arthritis.  Hypermobility.  Gastric issues.  So they will diagnose easy things such as tachycardia, fibromyalgia, arthritis, irritable bowel syndrome.  But if you pull the whole puzzle together, you'd find a rare disease, a zebra.  Sometimes the symptoms are not just small issues.  Sometimes they are puzzle pieces.

 

Where do Pandas come into this?  Well, a handful of us EDS zebras have been found to have odd symptoms that couldn't be explained by EDS.  One of our genius doctors started looking deeper and made a discovery.  Pandas!  Really, its an acronym for pediatric autoimmune neurophysciatric disorder associated with strep.  Its an autoimmune disease that, until lately, was diagnosed in pediatric patients.  Turns out, though, that there are some of us out there that have it as adults, have probably had it for years and years, untreated.  It presents as anxiety, depression, OCD, mood swings, tics, tourettes, tremors, seizures, and a lot more things that I can't think of.  It looks like a psych issue.  But, if you look at our blood, you'll find that we have a problem.  When we are exposed to certain disease, and its different triggers for many of us (strep, lyme, coxsackie, mono, pneumonia, etc), our body creates antibodies.  In a normal person, an antibody is the way the body remembers and recognizes that disease on repeat exposure and can make what it needs to attack and kill it.  In a person with Pandas, we make the antibodies long after the disease is gone.  Those antibodies become confused and see the brain as the bad bacteria or virus.  So, it sends armies of antibodies that somehow cross the blood/brain barrier and attacks our brains.  They are literally trying to kill it like a disease.  This triggers the odd behaviors.  I mean, wouldn't you act odd if you had an army of antibodies climbing over and attacking your precious brain cells?  Treatment varies, depending on the trigger and how long you've had the disorder, among other things. 

 

I have both Ehlers-Danlos and Pandas.  Not only is everything made of connective tissue inside me trying to fall apart, but my brain is being attacked!  So, there you have it, zebras and pandas. 

 

 

Oh....don't forget to share my page.  And mention to your friends that there is a link to our fundraiser at the top of the page.  Zebras and Pandas can be quite expensive!!

The decline (aka my whine for the day)

I hate Ehlers-Danlos.  And I am sinking.

We were talking this morning, my family and I, about how this disorder has consumed my life.  Sometimes I wonder, if I never knew I had all of these things wrong, would I be this sick?  Yes, the logical side of me knows better.  I was this sick and that's how I found out I had these things.

I go back to Maryland next month to follow up with the wizard, my neurosurgeon, Dr. Fraser Henderson.  The man performs miracles.  We will look at the results from my last surgery, which I do consider successful.  And we will look at the symptoms that I have now and decide if we'll do the brain surgery.  We have been putting it off.  Some people's chiari or cranial instability are life threatening by the time they get to Dr. H.  Mine was not.  Well, it could be, has potential to be. But, my brainstem was not crushed like some.  Mine has looked a little different on each set of imaging.  So, we've tried other things first to see if it takes some of the pressure off of my cord and brainstem, hoping to avoid the big surgery for a little while. I don't know what else there is to try, though.  Or, if he thinks that I am ready.  I don't want the surgery.  But, I want to go live again.

I'm getting more and more sick, again.  For a while, I think I was feeling better.  Now, I am waking up with headaches and nausea every morning again.  Headaches are lasting through the day.  I'm having horrible pressure inside my head some days, despite being on medications to decrease that.  The pressure is probably high intracranial pressures.  That's what I'm being treated for, anyway.  My vision is getting worse, blurred or doubled more than its not.  The bounding heartbeat, that feeling, is coming back, despite the beta blockers that had controlled it.  I have neuropathy in my hands and feet.  My neck has started popping when I move it and the pop makes me sick through my head.  My reflex in my left pupil is becoming sluggish. And the tinnitus (which is either spinal fluid or a compressed blood vessel) is getting a lot worse in my left ear.  I need a magic pill that fixes all of that.  I do NOT want brain surgery.  I do want to be better and work again.

The not working part, that's killing me.  More than anything else, I'm going crazy because I can't work.  I want to be a nurse.  I want to have a paycheck.  I want to contribute.  I want us to stop sinking financially.

On a good note, I just finished my first year of grad school.  Despite all of this.  I don't know if I'll make it through or not.  But I refuse to stop trying until there is no choice.  I have got to think that I can give my family more, make a better life. 

The Impact of Illness...

Having a chronic illness changes everything in your life.  Having one that kicks in unexpectedly, becomes very serious and changes everything that you do changes everything about you.

How has EDS and all of the illness that followed changed me? Wow, where do you begin.  Lets start with the social impact.

When you are ill, your friends are there.  But, sadly, as things progress, many begin to drop out.  At first, I was hurt and angry.  At a time in my life when I needed it most, almost no one was there.  With time, I've let most of that hurt go and attempted to understand.  Maybe many people just don't know what to say.  Maybe some just can't handle hearing about your illness so often.  And maybe they just assume that other friends are checking in on you.  We are humans.  It is easy to not think about what isn't in front of you.  But, for those of us who are ill and left behind, its a lonely life.

There is a huge mental impact.  I have had a job of some sort since I was old enough to work.  I've always earned money, except for a short time when my children were very young.  Maybe it wasn't much, but I was out there doing it.  I've always been a multitasker, enjoyed the chaos around me.  Working, college, kids.  Now, I am very dependent on everyone else.  I miss working.  I was a nurse.  I cared for others.  I helped save lives.  Now, I have to bribe and pay my kids to help me clean the house because its almost too much.  I had to reevaluate how I saw myself.  I had to find new self worth.  I'm still working on that one.  Not there yet.  I have, however, learned to see people differently.  I like to think that I've learned to be more kind, a little more understanding.  I'm certainly trying to.

And then there is the financial impact, itself.  That one can be huge!  I have had two surgeries since November.  We have made four or five trips to Maryland for visits and surgeries in less than a year.  Maryland is 600 miles from us.  There is the cost of gas, motels, food, physicians and scans and the surgical costs.  I've costs my family thousands of dollars.  I am the woman who will hardly buy new shoes for herself because my kids may need something instead.  So, giving this money over to care for myself has been VERY hard.  And where does it end?  Financially, we will slowly sink.  I've not been allowed to work.  Yesterday, we reevaluated and it was decided that no, I am still not released for work.  They feel that it wouldn't be safe for me or my patients.  Not until we fix my brain.  I currently draw disability insurance from work.  It is equal to about half of my previous paycheck.  None of my bills go down, though.  So, we have to make it on a lot less money AND come up with the money to travel and pay my medical bills.  Thankfully, there have been some wonderful people, family and friends, who have done so much to help us.  But, it is never ending.  I have a trip coming next month and right now, I'm not sure how we'll manage it.  But, we will.

With a serious illness, you have to consider the possibility that you'll die.  No one likes to talk about that part.  I am a nurse, though.  I am not a stranger to death.  Just this year, I have saw so, so many stories of others with chiari who have passed away.  Young people.  People who should never have died.  This could be any of us.  We have to fight a system that doesn't understand our illness.  And, in my case, I had to come to terms with the possibility.  I am a realist, I can't sugar coat it for myself.  So, you accept the knowledge that it can happen, you fight hard to be sure that it doesn't and you live the best that you can.

So...there is a little insight for those that haven't been in these shoes.  A glimpse at the more private side.  Because, if I'm not going to let you truly know everything about Ehlers-Danlos and my other disorders, what is the point in doing this?

Dealing with doctors...

I want to help you all understand what its like to visit a doctor when you have a rare disease.  First, I had to get a cup of coffee in me while I thought about what I would say.  Like I said before, I am new to this. 

All of my friends and family know that I see a neurosurgeon all the way in Maryland to treat my condition.  Many of you may not understand why I travel that far.  You see, he is the FIRST that I've met who "gets it".  He truly understands Ehlers-Danlos, chiari, cervical instability and the multitude of other ailments.  He is a diamond in a gravel pit.

When we started this journey, we saw a lot of doctor's who discredited any suggestion that I made.  But, I was just learning about connective tissue disease and really didn't have a foot to stand on.  It all started with Ashley and her many trips to the orthopedist for her constant dislocations.  Each time they just said that they didn't know what was wrong or why she kept stretching and tearing these ligaments.  They would put her back in braces, back on crutches and send us on.  Until the day we say the "new" doctor.  I don't even remember his name.  I should find out.  He was new at the practice, though.  For this visit, I had no babysitter, so I brought all of my kids.  He was looking at Ashley's knees, then looked at my family of tall, thin children and asked if we had Marfans.  I had only heard of Marfans, really knew nothing about it.  He said that he really believed that may be our problem and for me to find out.  And so began the journey.

Where does a parent start with that?  At home with their primary physician.  We saw an awesome Nurse Practitioner named Jodi (and, I ALWAYS recommend the NPs over MDs but I am biased).  She knew a bit about Marfans.  She began looking at my kids and finding things that I just hadn't noticed, as a mother.  Yes, they were a little taller than average.  Yes, their arm span was longer than their height.  Yes, they all had a high palette, crowded teeth, history of speech problems.  They had long legs, very long fingers.  Yes, they were all double jointed.  Three of them had scoliosis to varying degrees.  A couple of them had irregular heart beats.  The were things we hadn't picked up or put together.  Until now.  They met enough criteria  (Marfan's symptoms) to consider more testing.  So, they were scheduled to see a pediatric cardiologist and a geneticist at UK medical center.

This is where the fun starts.  The day rolled around and we went to see the cardiologist.  Let me say right from the start that he was a jerk.  He wanted to know why we even thought we had Marfans.  I explained their story, their symptoms.  He said nope, he knows they don't have it.  They are fine, just a little tall.  But, he'll do an echo on each one just in case.  So, one by one I went in with them while they had an echo.  After, he tells me that they all look good.  The twins had a slightly larger than normal aortic root but that he thought it was actually normal for their age and that the problem was they were too thin, which distorted the percentile.  Otherwise, all fine.  No abnormalities.  We don't have Marfans.  Silly idea.  Go home.

Next was the geneticist.  Because I brought 4 kids to be examined, they split them into two rooms with two physicians.  I was with the girls.  The lady, who I hear has moved on to practice elsewhere, thankfully, looked them over.  Again, I was asked why are we there.  Again, I go through the story.  She checks them out, says sure they are a little hyper mobile, but they are fine.  That I was wrong, their measurements are fine.  This is when I began to learn to stand up for us.  I told her that no, they are not fine.  I measured them myself.  I told her to not "eyeball" it and actually measure.  So she did.  And had to admit that I was right.  They are off.  So she looks them over again.  Finally, after several tests, she tells us that they do not have Marfans.  She says my oldest has Ehlers-Danlos.  She said she had some subtype, she wasn't sure which, and not to worry about it.  It was no big deal, there was nothing we could do.  Then, she says that the oldest was gaining a little weight and she just needed to exercise and monitor that.  And she sent us home.

It was almost a year before I figured out that Cincinnati Children's Hospital has a connective tissue clinic and a specialist in EDS.  During that year, I kept pushing for answers but no one had any.  So, I took Ashley to Cincy.  There, we met an awesome doctor who knew exactly what was going on.  He spent an hour with her, checking her, asking questions.  And that day we found out that she (and probably myself as well) had EDS-hyper mobility type. We've saw him a couple of times since, over the last couple of years.  He is still just as great. 

Now, this is just the beginning of our story.  Since then, we have saw many doctor's and been in the ER a few times.  Each time, I have to explain that we have Ehlers-Danlos and give a quick, summarized lesson about it and what it does.  I have to explain the connection to whatever we are having treated.  I have to tell them what to look for.  And then, most of the time, I am discredited.  They say "no, EDS makes you hyper mobile.  It doesn't cause pain.  It doesn't cause GI issues.  It doesn't affect the heart.  It doesn't cause your meds to work wrong.".  Because I am a nurse and have had a few years now to learn about this, I can argue my case.  It doesn't usually matter, though.  I only have RN after my name.  They have MD.  So, they are omniscient, all knowing.  They are wrong, though.  I have learned, for most things, to seek out the best physicians, those most familiar with EDS.  Usually we accomplish this through support groups, facebook groups and EDS friends that I've made a long the way.  If a doctor doesn't factor EDS into our situation, I move on.  EDS factors into everything, now.  No matter what is wrong.  Many patients spend years and years fighting physicians, trying to find out what is wrong with them.  They spend years being given wrong diagnosis, psychiatric diagnosis, called Munchhausen mother's or patients.  These are strong people who keep fighting.  We were fortunate that our journey took years, but not nearly as many years as theirs. 

I usually only take my family to the best, now.  It means we travel.  But, it means we are cared for properly.  And, that is how I found my physician in Maryland.  I only saw one quack neurosurgeon before him.  A man in Cincinnati.  A real idiot.  Then I found Dr. Henderson.  He has made it his life work to understand us, to understand EDS and the way it affects our bodies.  The man is a real genius.  Truly, I've never met anyone like him.  I am both intimidated and fascinated by him.  We really love him.  I have learned so much from him about myself, about the way my body works.  Someday, I'll talk my daughter into seeing him.  I've joked before that the man can sniff the air around us and tell what's going on in our bodies.  Piece by piece, he has put me back together.  And I never knew I was so broken until he fixed me and the pain was suddenly gone in whatever part of my body.  Some of the things we have, such as chiari, can be life threatening.  But, I have faith that he won't let me die.  He'll get to it, he'll fix it when it is time.

Over the years, I've saw a lot of doctors who said that I was wrong, either about myself or my children.  But, I am not.  I refuse to take their answer.  Don't assume that you have to take the diagnosis that they give you.  You don't.  Argue to have that removed from your record.  Fire them.  They may be MDs, they may be more wealthy or more educated.  But, guess what?  You are still paying them.  They are hired by us.  They can be fired by us. When you know they are wrong, move on to the next.  When the money runs out, fundraise.  Beg.  Swallow your pride.  Because you deserve to live.

I'll wrap up this book chapter with that, because today I can't see.  Everything that I type is doubled.  That is just a mild part of what I go through.  But, my eye doctor says I am fine.  ;)

If you can, click the link over there to our fundraiser and help us.  Or share it on whatever social media you use.  I won't stop fighting to live and to fix my family as they need it.  But, it does cost money.  A lot of money.  Lets just say, I could have nearly paid off my mortgage by now.

What is Ehlers-Danlos?

I'll give you the easy version of it.  Ehlers-Danlos is a genetic disease.  I likely inherited it from my family and I have passed it on to my children.  We have a 50% chance of passing it to each child that we have.  Only one of mine is diagnosed so far.  I believe that at least two more have it.  The last, I'm not so sure of.  Ehlers is a connective tissue disease.  This means that it affects any or all of the connective tissue throughout our bodies.  Your skin, ligaments, blood vessels, gastric system, parts of the heart and a few other things are made of connective tissue.  Ehlers presents differently in everyone.  For my daughter, it caused multiple dislocations of her knees at first.  Now, she dislocates most everything...hips, shoulders, ribs, wrist, knees.  Have you saw a ball player fall on TV and tear a ligament, an ACL or something?  You know how that hurts him?  Well, imagine being a teenager girl that does that on a regular basis.  For me, it was just a general clumsiness.  With my second pregnancy it because horrible hip and back pain, complete leg numbness.  It was very fast births or premature births.  It was arthritis that made my knees weak in my early 20s.  And then in my mid 30s it became an odd set of neurological symptoms. 

And, with that, I'll introduce you to Chiari malformation and how it showed up in our lives.  A couple of years ago, around the time I was diagnosed with EDS, I began having neuro symptoms.  One weekend the right side of my face stopped working (it is still weak).  They called it Bell's Palsy.  I developed tremors.  My lifelong migraines started getting worse and more frequent.  I started to have trouble talking, difficulty getting my words out.  And I was having moments of dizziness, stumbling.  Once I knew about EDS, I started looking online, trying to see if these other things fit with it somehow.  And I stumbled onto info about Chiari.  Chiari, as previously explained, simply means that the hole in the bottom of your skull is made a little bit wrong and your brain is slipping through it.  This terrified me.  I spoke to one of the geneticist at Cincinnati.  She didn't think anything was wrong with my brain but she did order an MRI.  She thought that I just consumed too much caffeine.  Yea, I wish it was so simple.  A couple of weeks later I had my MRI, took the disc home and began comparing it to other pictures that I found of chiari.  I had it, too.  I began the hunt for doctors.  Let me tell you, when you have this collection of rare disorders, it is very difficult to find a doctor who will treat you.  They tend to lack understanding, compassion or even an open mind to consider these diagnosis.  I tried and fired a few doctors.  Most blamed everything I had on being fat.  Fat is apparently such a disease in their eyes that it is the cause of everything, even brain deformities.  Over time, I was becoming more and more sick.  My daily pain level was through the roof.  And, I was still trying hard to work.  Paul and I eventually found Dr. Fraser Henderson, my neurosurgeon in Maryland.  We made one trip out there and just loved him.  He believed me.  He did a real neuro test on me, and I failed it miserably.  He ordered multiple scans and looked them over.  I left my first visit with him with a long list of new and surprising diagnosis. I was told that I had a 6mm chiari herniation, possible cervical instability, tethered cord, occult spina bifida, possible TIAs, and a few smaller things.  I was sad.  I saw the end of a career in my future.  I saw changes.  I've always tried to be strong and knew this was going to be hard.  But, there was relief in knowing. 

From there, we landed on this path we are on.  I went down hill pretty quickly.  I became a lot more sick.  I began having surgeries with Dr Henderson to repair some of the things wrong with me.  And, I still have more surgeries to go.  But, we are trying hard to make me better.  We are trying to fix me, to keep me alive, to put me together enough that I can go back to working, that I can begin a new career as a Nurse Practitioner, eventually. 

Where to begin?

I've never blogged so I don't even know where to begin.  I'll start with today.  I woke up with a lot of neck pain and a horrible headache.  I have a headache most mornings but today was worse.  It was one of those that shoots all through your head and makes you nauseous.  If I keep lying still, I can stand it.  Sitting up is so so.  Standing scares me.  I feel like I'm just going to collapse.  As soon as my feet touch the floor and I raise up, it feels like my head has an expanding balloon inside it.  I can't think clearly, the room spins.  I just give it a few minutes and then carefully move. 

Its afternoon now and I've barely moved off the couch.  I'm a doer so sitting here isn't easy for me.  But, its the only choice that I have today.  The weather is bad outside, a drastic drop in temperature, rainy, storms moving in.  The change in barometric pressure makes me, and others like me, very sick. It makes the headaches horrible, makes my joints stiff and more painful than normal, messes with my ability to think clearly.  I figure that's my biggest problem today.  The weather.

Now, lets back up.  A year ago I was a busy critical care nurse.  I was a little stiff, starting to feel a little bad, but I was working.  Not just full time, but overtime when I could.  I'd pull three or four long twelve hour shifts a week.  In between, I was a full time grad student.  And a wife and mom of four awesome teenagers.  That doesn't sound much like today's me, does it?  Yeah, its not.

I have Ehlers-Danlos syndrome(EDS) and multiple other disorders and defects that I'll tell you about.  Ehlers-Danlos is a genetic connective tissue disease.  Its a disease that I was born with.  It can affect anything in your body that is made of connective tissue including skin, ligaments, certain muscles, the digestive system, blood vessels, heart valves,  the eyes....and I'm positive there is more that I'm not thinking of. 

Because I have EDS, some of my bones didn't form right and some have collapsed.  As a result, I have another disorder called a Chiari Malformation.  At the bottom of our skull we have a hole, an opening, for our spinal cord.  When we have chiari, something has gone wrong with this opening and a piece of our brain, the cerebral tonsils, slid through that hole.  In simplest terms, a piece of our brain is falling out of our head.  This causes a long list of problems including pressure on the brainstem, headaches, vertigo and dizziness, dysautonomia (problems with heart rate and breathing), poor coordination and balance, poor fine motor skills, nausea, vision problems, strokes and even death.

With the unstable and collapsed bones, I have developed cervical instability.  Our vertebrae are technically joints, and they often shift, putting pressure on the spinal cord and nerves.  This causes a multitude of problems, depending on where the pressure is and what nerve it connects to.  Instability affects everything, from the brain and the flow of spinal fluid to all of the limbs and organs controlled by your nervous system.

Finally, I had another common disorder among us called tethered cord.  Tethered cord is exactly what it sounds like.  The spinal cord is tethered, or tied down.  It should normally be free floating within the spinal column, with no pressure or pulling.  Mine was held down by a large piece of fatty material inside my spinal column.  This meant that any time I moved, stretched, bent, etc, my spinal cord was being stretched.  For me, this caused horrible low back pain, neurogenic bladder and, over the last year, a tremendous loss of function in my legs along with horrible pain in the legs and feet.

I'll go into more detail about these disorders later, including more detail about symptoms and diagnosis criteria for each, including pictures.  For now, I just want you to see how having one genetic disease can change you from an active busy nurse to an ailing couch potato in a very short amount of time.

I stopped working in November of 2013.  I took off to have a spinal surgery to correct the tethered cord.  Then, I developed worsening instability of my cervical spine which was making me more and more sick.  So, I had surgery to correct and fuse c3-c5.  Now, I am still having a lot of issues with the chiari and the problems it causes in my head.  So, 2 surgeries and 4 months later, I'm still not working.  I'm still in school, though.  I plan to be a Family Nurse Practitioner when this nightmare slows down.  I've not given up hope, yet.

For a woman that's never blogged, I've just written a small book.  So, I'll stop there. Once I figure it out, on the sidebar I will include links to websites that are very informative about EDS and these other conditions.  I'll even include a link to my youcaring.com page, where anyone can donate to help my family cover the huge costs of these surgeries to fix me and our travel expenses, medicines, and whatever other new problem that pops up.  And, I'll hope that today I taught someone something new.