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!!