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.
Saturday, March 29, 2014
Tuesday, March 25, 2014
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:
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!!
Saturday, March 22, 2014
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.
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.
Wednesday, March 19, 2014
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?
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?
Tuesday, March 18, 2014
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.
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.
Friday, March 14, 2014
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.
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.
Wednesday, March 12, 2014
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.
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.
Subscribe to:
Posts (Atom)