Sunday, July 21, 2013

"God uses us in our brokenness"

This will be a little bit of a different kind of a blog post.

Remember when you were in elementary, middle, high school...heck, college, for that matter and the teacher goes here, read this book and write a book report on it and the whole class complained?? Yeah, me too...and I was usually the loudest complainer. So what am I about to do? Write a book review. Sort of.

I just recently read a book. For fun. I don't know how I fit it in, in between my crazy hectic, almost tragic, life (that I may describe at some point in the near future--seems like I haven't done that lately). But I read a book. It was called "Kisses from Katie" by Katie Davis.

So let's get this sorted out. The review part is gonna be about like, well, real short. The remarkable amount of quotes and crazy ways I felt the way it tied into chronic illness and my life even though it had nothing to do with chronic illness or my life (which may indicate I'm obsessed or may indicate God needed me to read this book because I've been in a deep, dark place lately, despite what Facebook says) will be the rest of the blog. But you need to know what the book is actually about to get to the quote parts.

So the book is about this girl, named Katie (seriously, I know), who is the PERFECT teenager...nice car, cheerleader, homecoming queen, boyfriend she just knew she was gonna marry, parents who would pay for her to go to any college she wanted to go to and do anything for her. When she was 16 God told her she was to take a break in between high school and college and be a missionary...her parents thought it was just a notion, and she would grow out of it. Well, senior year came around and she asked her parents if she could start applying at places. Her parents, now realizing she was serious, agreed to let her apply. She went to Uganda over Christmas break to check it out with her mom, again her parents thinking she would get it out of her system and she would just want to go to college instead. However, she falls even more in love with the idea and is offered a job as a kindergarten teacher in an orphanage in Uganda and gladly accepts it and moves to Uganda after graduation. Long story short, Katie falls deeply, madly, passionately in love with Uganda, her 240 kindergartners, and the 14 (yes 14 girls she ends up adopting--yes legally adopting) by the age of 22. If you can't tell Katie never leaves Uganda, but you know that before you get the book home from the library because of the back cover, so it's not a spoiler :) What you don't know is Katie's journey of love, sweat, tears, passion, and redemption of going from the most popular girl that had it ALL in an urban high school to a single mother of 14 with NOTHING in the middle of Uganda running a school, a medical clinic, and a non-profit all at the same time. No kidding.

This book is one that I could not put down. So emotional. And I am not one for forwards and afterwords. But just a forewarning. If you don't want your heart to stay ripped out of your chest like mine was in the last chapter, please read the afterword, it will get a little better. That's all I got to say about that.

Now on to the parallels I saw to my life with chronic illness/Jesus/my life in this book.
**These are all quotes from Katie's book by Katie (or from the Bible) and then the indented part is my thoughts on it.

  • "But I have everything I know is important. I have a joy and a peace that are unimaginable and can come only from a place better than thus earth. I cannot fathom being happier. Jesus wrecked my life, shattered it to pieces, and put it back together more beautifully." 
    • This sentence was in the first page or 2 of the introduction and I knew I was in for a book homerun. If you've been around the blog for a while, or are even new to the blog you may notice that I'm kind of a big proponent on how God/Jesus is making beautiful things out of my shattered life. I think I've even used words pretty dang close to that before. And yes, "Beautiful Things" by Gungor is still HIGH up on my favorite song list. I may have just turned it up full blast on my way home from clinicals today when I needed some affirmation.
  • Matthew 10:28 "Do not fear things that destroy the body but things that destroy the soul."
    • Katie was talking about parasites and worms and dirt and nasty things, I am of course talking about my stupid health conditions. But seriously same thing, right. We are both knowing that we should be more concerned with things that should destroy our soul (Satan) but dealing with temptation of things that will destroy our Earthly bodies.
  • "We are not called to be safe, we are promised when we are in danger He is right there with us."
    • First of all, Chronicles of Narnia--Aslan--anyone? 
    • Second, get out of your comfort zone. Don't stay safe. Don't stay at home all day Megan, exercise for 10 minutes, do something fun, God is there with you. He will protect you. 
  • "We were each created to change the world for someone, to serve someone. Some days it is excruciatingly difficult, but the blessings far outweigh the hardships."
    • God created everyone to do something, to help someone, to do something. God did not call everyone to move to Uganda and adopt 14 kids at the age of 19 obviously. But God did call everyone to do something. A big part of getting over my brokenness after getting so sick was realizing that I didn't have to be a missionary in another country or travel all over the place to save the world. I could change the world from my bed. And I will. Somehow, someway. Because that is what God called me to do. It will be difficult, but the blessings will be there. 
  • "God spent my whole life preparing me for the life He had planned for me."
    • God knew this was gonna be my life long before I did (duh!) and had me prepared for it. I just know it. From little things like wanting (and praying--literally) to learn how to cook before I got diagnosed with Celiac--which is a total necessity since restaurants are hard to do, but better now. To being a very, very, very organized and detail oriented person--which is a total and complete God send because I have medical binder upon medical binder and know where ever file and test and lab I've had done in the past 3 years is and can tell you what it means and what happened because of it. Who knew my anal retentiveness would come in handy? To some larger things like spending three years as a special education teacher where I was in the process of getting my master's degree, in which I had assignments on things like write me a 20 page paper on the American's with Disabilities Act...and now I know my rights inside and out...because now I am an American with a disability....and I advocate for my rights frequently ;)
  • "Sometimes it's like I'm emptying the ocean with an eyedropper and just when I have about a half cup of water it rains."
    • This is how my life feels a lot of the time. Everything takes so much energy. Katie was talking about having so many things on her plate. And I am too, but just in a different way. I'm talking about having so many things on my plate and trying to get them all scheduled and get everything balanced and scheduled in between sick world and real world and you think you finally got it and then it pours....and you have to start all over...yeah that would definitely be this month...but I might get to that like I said already, in a different post....haha
  • "There were many moments when the only way I could keep going was to try my best not to look back but to look only forward, relying on God's perfect plan." 
    • I for the life of me can't remember the quote that Mary Ann Cody told me the week I was getting ready to leave Salisbury for "good", but it was really similar in nature to this. But something about not even looking forward, but looking up because God knew what was going on (very loosely paraphrased). I remember, of course, the whole way driving from Salisbury to Indiana trying my hardest with that quote in the back of my mind to not look in the sideview mirror while I was bawling my eyes out as my mom drove me out of the town I loved. To look forward because God knew what he was doing, He had a plan. I stopped crying about the Tennessee border if I remember, right, I don't remember if it was sheer exhaustion, or if once I got out of NC I came to the realization that it was over, and I had to get over it. But ever since I got to the TN border, I've had to keep moving forward. I don't let things set me back. Not a diagnosis, not a treatment, not a side effect, not a timeline, not a prognosis. I just keep swimming. 
  • "Neither this man, nor his parents sinned, but this happened so that the work of God can be displayed in His life." John 9:3 
    • This verse is sometimes used to explain why bad things happen to good people, or why sickness happens to young people. Or any number of other things. I find comfort in it. Because if God can be displayed through my life through my struggle, fight, and conquer of chronic illness; then that is a good thing. If one person is saved through my adversity, then it is worth it. 
  • Adoption---this isn't a quote, but a theme
    • Obviously, from my review you heard me say Katie adopts a whole lot of kids in her life at a super young age. It has ALWAYS (since I knew what adoption entailed fully) been my DREAM to adopt a whole lot of kids too. In fact, I wanted to adopt a child from every continent in the world so that I could literally have the whole world in my house. I am not saying this dream is dead. But unless I find a very rich, understanding husband that is gonna do all the work and make all the money, it's probably gonna be in some severe trouble ;) I still hope to have at least one child through adoption (I definitely cannot have my own kids physically any way at all--which is another way in which God planned ahead for me because my heart was for adoption before I was aware of this), although at this point it will likely be a foster to adopt of an American child and only if I get a whole lot better and only if I get married because it is unlikely they would place a child in my care at this point (and they would be right not too, if the state is choosing--I am not saying I do not have many very capable, very loving, very caring, chronically awesome parent friends...but I know they, like any other parent, have struggles that may be more than most healthy parents). Anyways. I love me some adoption. Please, if you are able, go adopt you a whole bunch of babies. Preferably some babies with some special needs from eastern european nations. I will even set you up with some resources :) 
  • Another theme that she spoke of was money and how she used to be "Rich" and had all her needs met in abundance and  now she just had her basic needs met and felt more rich than ever. 
    • I go through this so much now. I am living on disability and very minimalist and feel much more blessed and abundant than when I had a real job and was getting more than one paycheck. The money I get now is more useful and important to me. All my needs are met. God provides for me in miraculous ways. And never lets me want. He even lets me thrive. When I was earning a paycheck, I wasn't even thriving, I was living paycheck to paycheck and bouncing things and so on, but now that I have to trust in him, I am thriving. 
  • "And when there's nothing left, and we feel we're all in pieces God begins to make us whole, he makes us real. His love sets us free and transforms us." 
    • In the past month I've been to the bottom, and this is true, and God is making me whole. But it's not public yet. But it might be one day. But for now, just know that this statement is real, so real. And it feels good. 
  • "People say I'm brave. They tell me I'm strong, They pat me on the back and say, 'Way to go, Good Job.' But the truth is, I am not really brave, I am not really strong; I am not doing anything spectacular. I am simply doing what God has called me to do."
    • Honestly, I get kind of tired of this. I'm not doing anything different than anyone else. If you get a chronic illness you have to learn to deal with it. It's not like something you get to choose to deal with one day and not the other. It's there every day for the rest of your life. You aren't being brave fighting it every day. I mean I can feel that way, but don't like treat me like I'm the only one doing this because there are millions. It's just the same as someone who has some different calling like being a soldier, or something. It's their job. Being chronically ill, is mine.
  • "The farther away I got from home, the more my trust had to increase...I couldn't imagine that my heart had the capacity for any more trust, but with every passing mile, I found out , that it did." 
    • I still--2 years, 9 months, and 1 day after leaving Salisbury--say but if only I could be in Salisbury, if only I could be home, if only I could be do this again, if only I could be with this person again. And every day, my heart gets a little bit better at coping with it and a little better at realizing that it's gonna be longer and longer until I get those things to satisfy my soul again. 
  • "It's just a little bit of coffee, and a whole lot of Jesus."
    • So this may or may not be my new life phrase. I saw this quote on Pinterest, looked up where it came from and found out this book, and this is why I read it. So thank Pinterest for this blog. But seriously. If you know me. How much more perfect could you get for me? This is how I do most things in my life. But it may be a little bit more than a little bit of coffee ;)
  • "The number of days or weeks we are together isn't important, what really matters is the way God knits our hearts together during the time He chooses for us to be in one another's lives."
    • This was in the part that I was talking about in the beginning that will rip your heart out if you don't read the afterword. So read it. But it reminded me of all the people that have been in my life and it doesn't matter for how long, God knew how long they were gonna be there and He knew just exactly how to form those relationships at the right speed to make them work for that time frame, because He is awesome. It also reminds me of all these support groups I'm involved in now. And how we all come together to get advice and help and support each other in very intimate and vulnerable ways and God somehow knits the right people together at the right times. How else would these people with this super rare disease be able to meet all over the world otherwise. Thanks Facebook and God :) 
  • And the last one, "God uses us in our brokenness"
    • This was actually not in the book, or in the afterword, but in the "discussion with Katie" all the way at the very end (yes, I liked the book so much I read the interview with the author at the end). And obviously I think it's a true statement or I wouldn't use it as the title for my blog. But He does. God knows what we are going to find as brokenness and turns it into passion. He takes our pain and turns it into plans. He uses our brokenness for good. Here I am, one chronically ill girl who wants to use her education and dietetics knowledge to revolutionize the medical world for people with chronic illnesses and get them the help and support they need. I want to start a blog-o-sphere revolution on nutrition for those with chronic illnesses. I want to go into private practice here in town (very part time while still being on disability because there is no way I could work full time) helping those with chronic illnesses, food allergies, or developmental disabilities with their nutritional needs. And why do I want to do all these things? Because I am broken in these places. God uses us in our brokenness. Everybody's broken. And it's for a good reason. Because if nobody was broken, there would be nothing to fix, and then there would be no room for passion and perseverance. 

Thursday, July 11, 2013

Dear Doctor: An Open Letter from an ex "eating-disordered" dietetics student

Disclaimers: I was never OFFICIALLY diagnosed with an eating disorder, though everyone who knows me knows I had/and maybe have one.

This blog is hard for me to write and not something I really wanted to "come out" with, but thought it was important, and very current.

I am not in any way saying these are the views of dietitians everywhere, the American Dietetics Association, the program of which I attend, nor am I licensed, registered, or credentialed, so take this with a grain of salt.


Dear Doctor:

You  may not know this but I've struggled with food my entire life. I've struggled with the way I look at myself in the mirror my entire life. I've struggled with what other people think of what I look like my entire life.

You see, up until recently, it's not what the normal person with an eating disorder would say. I struggled with what I looked like and what I ate because all the time people would say to me, "you're so thin, it must be so nice to be so thin," or "you must be so lucky to be able to eat whatever you want to eat and not gain an ounce," or so on. So what went through my head? My value was that I had to be thin...that's what people saw in me, that's what people thought was my beauty.

Then high school hit, and everything I started eating made me sick, literally, not psychologically. But I went to your colleagues, and you told me I had an eating disorder. There was no way a 16 year old girl that was as skinny as me could not have an eating disorder while claiming to get sick from everything they ate, there was no disease that made someone sick every time they ate. So I believed it. And ate a little less and less.

It didn't help that I was running a lot, and working a lot, and doing a lot of things. I was skinny. But I didn't see it. People kept telling me I was skinny. But I didn't think I was skinnier than anyone else. Others did though. And they tried to help me. But I didn't have a problem, remember? Well, I didn't until the doctors, your colleagues, kept telling me I did.

Next, I went to undergrad and became a vegetarian. You see you were telling me that I had to start eating again. But it still hurt and made me sick every time I ate. Naturally, I felt better eating salad, no one knew why then. You also see, this was almost like an eating disorder too. I was controlling what I was eating by becoming a vegetarian. You could tell me to eat, but I was going to tell you what I was going to eat dangit. Plus, at a small, private, liberal arts university there weren't many vegetarian options so it may have been a way to self-select a lower calorie diet as well.

I became a carnivore again halfway through college, but I was still getting sick every time I ate and still making up ways to self-select out of meal time. Extra practice hours for that concert coming up, I had a lab report I needed to make up for organic chemistry, extra. Plus, I had the worlds best excuse when my school ended up on the top 10 list for the nations worst cafeteria foods year after year, who would want to eat that?

The year after I graduated college, I finally figured out why I was getting sick after every time I ate. I didn't have an eating disorder (until you made me believe I did). I had celiac disease you dim wits. A simple blood test and we could have saved all the hypochondriacs, and the this can't be happenings, and the psychologists...well, it could have saved a lot.

Most of all, it could have saved doctors telling me for 8 years that I had a disordered view of eating, when I had already had lay people telling me that my whole life. Doctors, who I am supposed to be able to present physical symptoms too and get a physical diagnosis from, gave me a psychological diagnosis (though it was never written on paper--just thrown around here and there) for 8 years. When all it took was a blood test. And all it took was a blood test, when I was so malabsorbed from not being able to absorb nutrients properly my entire life that I was almost dead and needed a blood transfusion and multiple vitamin and mineral transfusions. Isn't that your job, blood tests?

Well, I got my diagnosis, and I got sent a dietitian. And I'm still great friends with her. Hi Anna, if you're reading :) And she told me just what an "eating disordered" person wanted to hear. This diet was all about control. But I hated it, because now it was you telling me what to control, not me controlling the control. So I cheated for several months and got really, really sick.

Anyways, I digress.

So now, we end up where I am today. Mad as get out, and trying not to use bad words, because I have a feeling this might get shared by a friend of mine and I don't know where it will go from there.

I have several chronic illnesses that require the use of regular medications. Most of these medications have a side effect of weight gain. I went my whole life being as a super skinny, tiny, girl who weighed 120 pounds at the age of 25 TERRIFIED (and I'm not talking like nervous, I'm talking shaking in my boots, nauseous) over what would happen over if I got fat. And last January I weighed 120 pounds and by April of the same year (3 months), I weighed 180 pounds...and 2 months later...I was 200 pounds. This all started when I started one medication, and stopped when I went off the same medication. We know it was a medication reaction. It was not something I did, but still. I went from underweight to obese in 5 months flat.

My worst nightmare had come true in 5 months. And ya know what made it worse. You.

The first experience I had was nothing short of something that should have probably been brought to a medical board of some sort, but was taken care of internally instead, and can be read about here, in the second section. After that, it's been doctor, after doctor telling me what I need to do, and that I'm obese, and that my BMI is this. But not one doctor has told me what to do to fix it. Not one doctor has told me how to do exercises with my disability where I can't exercise at all without passing out. Not one doctor has offered to put me on a weight management plan. Not one doctor has acknowledged the fact that hey, I'm a dietetics student, I might know what I'm doing, maybe it's a metabolic problem you butt hole. Maybe, my body can't lose the 80 pounds I gained from that drug you put me on since I am sedentary and can't burn the calories I'm taken in, and since I'm still on 5 other meds that cause weight gain, it's probably not gonna be that easy to lose it still.

Well, in January of this year (1 year later from when I started gaining the weight) I started tracking my calories--following a recommended diet, just making sure I was not drinking my calories and things like that--and the weight slowly started to come off. I have been super proud of myself considering I can't exercise at all and as of today officially lost 21 pounds!

That was until I started going to doctors here recently, being all proud of myself, knowing I am going to make it (and soon I think) back into the "healthy" range of BMI. And then I walk in, and there is not one comment of you've lost so much weight, or look at you, or whatever...just you have such a long way to go. In my opinion, 16 pounds, when at the beginning of the year I had 38 to go, is nothing! I can do it.

I thought when the AMA decided that obesity was going to be a disease I was going to be excited because I thought dietitians would have more opportunity to be 3rd party payed. But what I didn't realize is, it would completely take the doctor's ability to see past what the patient is actually trying to do, and what the patient is actually putting in their mouth, and what the patient is actually saying, and doing, and trying for. Because as soon as their BMI comes out over 24.9, your are labeled overweight, and as soon as it's over 29.9 you are obese. And it doesn't matter who is on the other side of the paper that the nurse hands the patient.

It doesn't matter what emotion your patient has. What they have struggled with. What they may do to themselves because of what that paper says. As long as you comply with the government.

It doesn't matter that the government mandates that letters are sent home to 3,4, and 5 year old's at their pre-school's or WIC or from your office. It doesn't matter that to those parents they are hearing to put their 4 year old on a diet...seriously. Did you know that 80% of 10 year old girls have tried a diet? That is disturbing.

And let me tell ya a little about BMI, it doesn't mean you're fat. It means nothing. It just says height for weight. It does not take into account water, muscle mass, % body fat, anything. I know an elite athlete personally that was at the top of her game and wore a size 2 and was considered severely overweight and almost obese because she was all muscle. This girl was solid muscle. And muscle weighs a lot. BMI is complete crap.

Back to me and in closing to you doctors, my esteemed colleagues. May I leave you with 2 stories. Both about me. Both have happened in the past 3 weeks.

4 weeks ago (on a Thursday) I went into my PCP's office with a relentless migraine, they weighed me before taking me back, of course. I ended up having to go back that following Monday (5 days later) with same said migraine and some severe blood pressure and heart rate issues. I ended up getting admitted to the hospital. When I get admitted I always request my medical records just because I have way too many bad stories. Well, I went to go read my admissions documents and it clearly said at the top of my sheet where they had weighed me at the appointment Monday: my weight and then (patient has lost 4.5 pounds in 5 days!). Then I kept reading further, in the general section, where weight is supposed to be addressed, it says "Patient is visibly overweight, should consider weight management". Seriously. How is losing 4.5 pounds in 5 days, not weight management, in fact, I would believe, that would be what I would address about weight in my SOAP note, not that the patient is overweight, seems more timely and relevant to me.

Story 2. This happened today. And reminded me how much I hate BMI and doctors trying to control what's going on in my life.

This morning I posted this status:

And then I went to the doctor, had a great visit, walked out, and read this on my visit summary sheet. The doctor who wrote this (or at least allowed the computer to let the trigger go through) was overweight. Plus, she was referring a student dietitian who has managed to lose 22 pounds in 3 months by herself to a PCP who is also overweight to get weight management tips and recommending physical activity. 

I'm already not eating well because one of my chronic illnesses causes me to feel like I'm going to pass out when I eat and ironically now I'm on a medication that causes appetite reduction and weight loss. And I have a history of feeling self-conscious about how I look and feel, a history of "disordered eating" whatever that means for me, or anyone else. Plus, I have a history of having a FEAR of being big. And I finally have it in my head that I'm doing good, and you doctors go and do shit like this (oops, a bad word, but it deserved it).

Do you know how harmful you are being? Really?

Are you talking to girls about how beautiful they are (in a legal, non pervey way)? Are you telling them how to make healthy choices, and how to want to be healthy, not how to want to be thin. Didn't think so. Not if someone who has been trying as damn hard as I have with what I've got to deal with, eats an entirely gluten free, mostly anti-inflammatory, mostly liquid diet, who is almost a master's level dietitian and is specializing in diets for those with chronic still getting stuff like this written on her summary visit note.

Anyone who knows me, knows that my BMI does not reflect what goes in my mouth. And even if it did. That number doesn't define me. The person I am does. And what I am is a person with many chronic illnesses, who used to maybe/probably/probably does have an eating disorder, who will be a kick butt dietitian one day (soon!), who sees a major flaw with the system, and not enough girls being told they are beautiful!


A concerned gal for herself, her peers, and the future gals.

Tuesday, July 9, 2013

Broad Symptoms, Narrow Diagnosis

If I asked you based on the list of symptoms for dysautonomia if you had it, I bet 100% of you could say yes at one point of another because 100% of you have had all the symptoms at one point or the other. That is until I explain how it really feels for us [people with dysautonomia]. You see that's why dysautonomia is so hard to diagnose. Because it is a set of "non-specific" symptoms, that "don't relate to each other" to the doctors eye that sees you for a cough one day, then a numb foot the next day, then a fast heart rate the next. What the doctor doesn't realize is these are all very specific and related symptoms. Just not in a way that they are familiar with. 

You see Dysautonomia is a syndrome; therefore, there is a big collection of symptoms that distinguish dysautonomia. Then there are sub-types of Dysautonomia and each of those have certain symptoms. The symptoms I am basically going over are from Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension (OH) which some doctors group together and some separate. OH is a drop in blood pressure of 20/10 so like this morning my blood pressure went from 120/105 to 100/69 which was a drop of 20/36. The POTS part is a raise in heart rate of 30 beats per minute at the same reading my heart rate went from 80 beats per minute to 120 beats per minute so it rose 40. Therefore, I definitely meet both criteria.  

The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. You can think of the autonomic nervous system as doing anything that is automatic in your body like breathing, blood pressure, heart rate, temperature regulation, digestion (eating), sweating, going to the bathroom, etc. Basically anything you don't have to think about or that your body does naturally, my body does wrong. A lot of these symptoms happen after a prolonged period of standing only, and all the symptoms vary person to person. 

Now I'm going to go through them all one by one and explain how they affect my life and you can see if it's the same for you. 

By the way, this symptom list was obtained from The Dysautonomia Information Network and is a great source of information if you feel you or someone you know may have Dysautonomia, or if you want to learn more about it! 

Symptoms probably related to cerebral hypoperfusion (Which means decreased blood flow in the brain because all the blood in our body pools in our legs and abdomens usually)

  • Lightheadedness: This is usually not just a like the room is spinning, I'm a little dizzy lightheadedness. It's usually a can't get out of bed, or I'm gonna throw up lightheadedness. 
  • Fainting or near fainting: fainting means you are completely unconcious, nothing is getting through to me, sometimes my heart stops. I have no idea what is going on. I can also hurt myself if I faint on like say a bathroom counter, dog crate, etc. The worst I have ever gotten hurt was on a door handle, that hurt bad and I had a bruise for weeks. Near fainting is fun too. This is usually where I am too, but sometimes it's actually worse. Because I know what the almost faint feels like I can stop progressing all the way to fainting, but my body doesn't get to reset if I don't faint all the way. Near fainting (or pre-syncope as I call it) involves my vision going blank, getting unsteady on my feet, getting super nauseous, sweaty, all the blood goes to my face, and then drains from it fast, heart starts racing, and I know I have to get to the floor now. There is also a specific position I have to lay in or else I don't feel better, it's called the recovery position in CPR/First Aid training, coincidence?
  • Generalized weakness: This one is basically how it sounds. You just feel weak all the time, you don't want to get out of bed, you can't get out of bed, you are weak. It is hard to move your legs, your arms, etc. This is so annoying because you want to do things, but you really can't. 
Symptoms probably related to autonomic over-activity (doing too much, and my too much includes walking to the bathroom from the bed some days)

  • Palpitations: This is when you can feel your heart beating at a different (fast, irregular, skipping) rate than it should be. This pretty much is any time I am out of bed and walking around, or standing up, or going to the bathroom (like you needed to know that), or taking a shower, or anything. Palpitations, that never go away. Not palpitations every once in a while. Every day, if I'm not laying in bed perfectly still. 
  • Tremulousness: tremors. shaking of body parts, or muscles, or whatever wants to shake whenever it wants to shake, or convulse, or twitch. Usually when I'm tired or stressed or just bored, or when there are multiple noises at one time. Especially when there are multiple noises at one time after 8 PM (mom on the phone with my sister while the TV is on...ask her, it's not pretty). 
  • Shortness of Breath: and not just like a little winded. Like I turn over in bed and feel like I ran a marathon, and I used to run them, I know what it feels like. 
  • Chest discomfort and/or pain: I think personally I deal with more the chest discomfort than chest pain, although I have both. The chest discomfort is like an elephant is sitting on my chest, pretty much a lot of the time. That one is getting better and I'm not sure why, but hey, I'll take it! :) 

Sudomotor sympotoms can include:

  • Loss of sweating: I'm starting to head this way, it seems like no matter how hot it is, I won't sweat, and then I overheat, and then I pass out.
  • Excessive sweating: Except at night, when I have night sweats and wake up in a pool of sweat ironic. 
These symptoms may be part of your dysautonomia, but may not be (most are part of mine):

  • Delayed gastric emptying: This means that the food doesn't move through your digestive tract as fast as it's supposed to which could obviously cause discomfort. I had a gastric emptying test because we thought this was happening with me causing a lot of my GI problems, but alas it was not true. 
  • Bloating after meals: This is a huge problem for me. The theory is that all the blood rushes to the abdomen to help digest the food but then doesn't go away like it's supposed to. This is a huge reality to me. And then since all the stupid blood in my body is at my stinking stomach, there is none at my brain and it causes me to pass out or go to sleep within 45 minutes of me eating every time. Every single time. 
  • Nausea: All the time, for no reason. Or never. I will go days without being nauseous at all. Then I will go days where I can't stop being nauseous at anything. I do not understand this.
  • Vomiting: Some people have cyclic vomiting syndrome or just vomiting in general with this. Thank the good Lord above I don't. I hate vomiting. I try everything to not do it. 
  • Abdominal pain: This again I believe is related to blood pooling and is very real for me. My abdomen is very tender all the time. And I have sharp pains all the time. 
  • Diarrhea (sometimes with alternating constipation): Yep, on both accounts. That's all you need to know.  
  • Constipation: Yep
  • Bladder dysfunction: Yep
  • Polyuria: Excessive urination. Yep. 
  • Pupillary dysfunction: sometimes both my pupils aren't even the same size at the same time. They also don't react the same way to light and dark that normal pupils do, people comment on it a lot. 
  • Blurred Vision: I get this a lot...sometimes it's scary because sometimes I'm driving, but don't tell...oops...
  • Tunnel Vision: sometimes I get this, but not often, but when I do it's the weirdest feeling. Like everything is in one line and I can't see anything beside me, so weird. 
Generalized Complaint Symptoms:

  • Fatigue: This is not like I stayed up too late I'm tired fatigue. This is disabling I can't get out of bed fatigue. Like every part of my body hurts because it is so tired fatigue. This fatigue is disabling. When I say I'm tired, you're tired can't compare, I guarantee it. Yet, I still manage to push through whatever thing I have to do that today, because I have to. 
  • Sleep disorders: Ha. That's all I have to say about that. I am tired and can't stay awake all day (but can't sleep because it's day time and there are things to do, like go to yet another doctors appointment). I can't sleep at night. I wake up feeling worse than when I went to sleep. Yeah. Sleep disorders. 
  • Headache/Migraine: I'm pretty sure I keep a headache all the time, and have a migraine from about 3-4 pm on every night. I just started topamax 2 weeks ago and it's been wonderful in curbing them, but they still aren't gone. But it's definitely helpful. Because they are definitely debilitating too. 
  • Myofascial pain--Fibromyalgia: Most people with dysautonomia have fibromyalgia. Fibromyalgia in and of itself is an excruciating debilitating illness and dysautonomia is too. The two together is ridiculous and unfair. The pain is unreal. It's like your body is on fire all day, every day. And when I say fire, I mean fire, that's the best way to describe it. 
Other symptoms may include: 

  • Dizziness: As soon as I'm sitting, or mainly upright dizziness is on. I can barely walk in a straight line. I would most definitely fail a sobriety test. 
  • Tachycardia:  This means your heart rate is above 100 beats per minute. Mine usually is. If it's not, it's pretty close. If it's not in tachycardic mode, I'm actually scared now, because I  feel worse when it's low because I've gotten so used to it being high. 
  • Exercise intolerance: This is not like I hate going to the gym so I'm intolerant of it. This is like the gym kills me, and it might. Or at least make me pass out. But I will run (walk, crawl) a half marathon with this. A friend and I are making plans. Because POTS can suck it! 
  • Clamminess: hands, feet, arms, legs, everything, clammy, all the time. for stupid reasons or no reason. all the time. even now. while i'm typing. 
  • Anxiety: This does not mean we have anxiety like the psychological disorder separately from our dysautonomia. It means that this huge, long, list of symptoms that isn't even done yet, all happening at the same time kind of makes us a little on edge and a little yes we are anxious, but no, we do not need to be labeled as having only anxiety and be sent home with no help from the ER. 
  • Flushing: how many pictures have you seen of me with my face bright red? How many times have I been asked if I had a sunburn? That is not sunburn, that is flushing. It means all the blood is flushed to one area of my body (usually flushing is in head and chest). Usually it's a reaction to something, and usually this isn't a good sign. 
  • Postprandial hypotension: I already talked about this sort of under bloating. But it's low blood pressure after meals. All the blood goes to our stomach, so there is no blood in our brains, so our blood pressure drops. So we get faint feeling, or faint, or have to take a nap immediately to recover. 
  • Blood pooling in limbs: I've talked about this sort of. But it's the main event with POTS especially. When we stand up, for some reason all the blood goes down to our legs and abdomen and doesn't know to come back up. So it "pools" in our legs, and abdomen (if we are sitting. This makes your legs feel really buzzy feeling and heavy and they turn really dark red and purple and can be like mottled and very painful. 
  • Intolerance to heat: This is a biggy in the summer. Personally, I can't be outside if it's hotter than about 75-80 degrees for longer and about 5-10 minutes before I not only get really, really hot...but also get nauseous, get a migraine, get dizzy, and feel really unwell. This goes back to the whole I can't sweat thing, so I can't cool down properly. 
  • Feeling cold all over: Even though I feel hot all the time outside, inside I'm cold all the time. And wear winter clothes all the time in the summer and have lots of blankets on my bed. 
  • Low blood pressure upon standing: Yeah, you saw what happened this morning already. 
  • Cognitive impairment: This is most commonly referred to us as "brain fog". Let's just go over some of my most recent examples. 2 weeks ago I called my car a guitar, today I tried to open a door (like with a knob) with my car unlock clicker thing, I get lost coming home frequently, and frequently forget where i'm going when I leave the house, and those are just some of the less embarrassing examples. 
  • Narrowing of upright pulse pressure: Pulse pressure is the number between the systolic and diastolic numbers on your blood pressure reading. Typically your pulse pressure should be between 30 and 40. As you can see, this morning mine was 15 at one point (narrow) and 69 at one point (very wide--this is also bad).
  • Cold hands: My hands are always cold. doctors have always commented on it, but never diagnosed me with anything. 
  • Hypolvolemia: This means low blood volume. This is why we commonly get saline infusions as a treatment. My blood volume is frequently low. Currently, I get two liters of saline every week to bring it up. 
  • Chills: I get these a lot. I have goosebumps a lot. And I get deep chills to the point where it makes my whole body shake and people look at me weird. I have to just act like nothing happened. 
  • High blood pressure: I sometimes have really, really high blood 161/127. But it is also believed I have HyperPOTS (which is another story) but it comes with really high blood pressures. So that explains that. 
  • Hyperventilation: breathing really, really fast because you feel like you can't catch your breath. I do this one all the time. And it usually ends up in me almost passing out or choking and having to cough to make myself breath right again. This one is dangerous because if you hyperventilate too much, you can deplete your Carbon Dioxide levels and go into alkalosis and die. 
  • Numbness or tingling sensations: This is very, very common. Especially in the extremities  My hands and feet are almost always numb. Lately my left foot and leg up to my knee have been numb and tingly all the time. It's more annoying than anything else. 
  • Low back pain: All the time. It will not go away. I do not know why this one is though. 
  • Aching neck and shoulders: Again, all the time. It will not go away. But I don't know why this happens. 
  • Noise sensitivity: This is a HUGE one for me. If I hear 2 noises at once I will silmutaneously jump out of my skin, have convulsions, and become a not so nice person all in about .5 seconds. If I hear one noise I don't like same thing. Noises are a huge thing for me. I hate noise. Noises are rude. They make me nauseous too. 
  • Light sensitivity: Another huge one. I wear sunglasses all the time. Even when it's pouring down rain because the rain is too bright. Fluorescent lights can die. 
  • Disequalibrium: This is obviously being off balance and I've already talked about it some. But it's bad. Yesterday, I was at the chiropractor and couldn't even turn from my back to my side without almost rolling off the table because my balance was so off. 
  • Arrhythmias: These are irregular heart beats...I have them quite frequently, but they aren't usually dangerous for us. But they happen a lot. 
  • Chemical sensitivities: This is a big one too. I am really sensitive to med changes, so when we decided to change all my meds this month at the same time and add some new ones it was a big deal and my body is not enjoying it. Also, smells like in detergent, perfumes, people who smoke, etc. really bother me. Now here is the weird part, if I put it on (I love body spray on me) it doesn't bother me, but on other people it makes me nauseous and have a migraine immediately even with the smallest drop. 
  • Easily over-stimulated: As I said, two noises, big trouble. Too much information in school, big trouble. 2.5 hour thesis, meetings big trouble. Driving 1 hour, big trouble. You get the picture. 
  • Feeling full quickly: well, this is really true right now, with Topamax being started. I eat hardly anything, but before then even I got really full, really fast. 
  • Feeling "wired": for someone who has as little energy as I do, I get these weird spurts. And I just have to do everything in the entire world all at the same time. They usually come on between like 8 pm and 3 am so I'm thinking they are cortisol related or something. But they definitely show up. 
  • Food allergies/sensitivties: So far we know I can't have gluten because of celiac. But I'm having a really hard time eating right now and i'm wondering if it's specific foods or the dysautonomia acting up. I really wanna try an elimination diet, but I'm too chicken. 
  • Hyperreflexia: is an exaggerated response of the deep tendon reflexes meaning that when someone touches you in one of your tendons there is a large reaction and response. This would probably be done by a doctor. I know I have this. Just ask my PT or my chiro or my rheumy about my right trap. 
  • Irregular menstrual cycles: mine is so irregular they won't even let me have one anymore, and that's all you need to know about that. 
  • Loss of appetite: Did I mention I'm eating less than 1000 calories a day right now.
  • Loss of sex drive: wouldn't know about that one, but I'm guessing it would be gone. 
  • Muscle aches and/or joint pains: every joint and muscle 24/7. Pain is very real and very much not in people's heads. 
  • Swollen nodules and lymph nodes: I do not have any of these right now...thank God :
  • Polydipsia: This means excessive thirst. Me nor my mom cannot remember a time in my life looking back (now that we know about this symptom) that I did not have a drink in my hand. Seems to make sense now, didn't really think about it then. Maybe should have. 
  • Weight loss or gain: Well let's see. October 2011, 99 pounds; January 2012, 120 pounds; June 2012, 180 puonds; January 2013, 203 pounds; July 2013, 181 pounds. Yep. I'd say that's some weight loss or gain. 
  • Restless Leg Syndrome: I'm on meds for this. But it still happens. And it's annoying. I really don't like the feeling of not being able to keep things from not moving when they aren't supposed to or where they aren't supposed to or whatever. 
  • Feeling detached from surroundings: Since about high school I've always felt like I was in a video game and that's the only way I knew how to describe it. But this is a better phrasing. But I always feel like I'm not really in the world. Just kind of like here but not making my own choices, like someone else is doing everything else for me. Like I'm a puppet and God is pulling my strings. But I think that's a good way to feel. 

Dysautonomia symptoms can vary from day to day. It's like we are on a roller coaster  One day I will have a super good day and be able to do whatever I want, the next I won't be able to walk to the bathroom by myself. It really is a frustrating syndrome for this reason. The symptoms tend to multiply and become exaggerated upon upright posture. This is why if you look at the list of symptoms without an explanation and without an understanding that a person with Dysautonomia suffers most of these symptoms almost 24/7, or a combination of these symptoms almost 24/7. With all of these symptoms it's very hard if not near impossible to live life at a functioning level. It would be nice to get off the roller coaster any day now. I would like to stand on the platform for a while, that's for sure!

Disclaimer: If you are suffering from some of the above symptoms, you need to seek professional help (click on the above link for the Dysautonomia Information Network and they have doctors listed by state that are approved to diagnose and treat dysautonomia). Please do not attempt self-diagnosis.

Thursday, July 4, 2013

Independence Day?!

 Independence Day. 237 years ago today America became a country. The United States of America became the "Land of the Free and the Home of the Brave." America became the place everyone moved to because anyone could believe or do whatever they wanted...even though we know from living here that that is not necessarily true. I mean there was that whole civil rights movement, the killing of the Native American's, the killing and condemning of homosexuals, separation of church and state, all kinds of people doing all kinds of things and getting all kinds of persecuted for it even though we have free speech here and all kinds of amendments and a bill of rights to protect us, and now worst of all the Paula Deen scandal (laugh people it's a joke).

Anyways, I digress...

On this Independence Day. I decided I was going to be independent. And by independent I mean about as dependent as independent can get.

I was going to go to the grocery store ***gasp*** I know!! shocking!! I can't believe it myself!! And I shouldn't have done it. You see, I haven't been to the grocery store in about 4 months, because every time I go to the grocery store, I make it about halfway through and feel like I'm gonna pass out and have to sit down and it's annoying and people stare at me. Then I have to find mom when I recover and then I decide to run back and get goat cheese and then run back to the front and then I black out and get a crowd of people around me asking if I'm ok. Yeah, this is all true story. P.S. There is now a bench in the middle of the grocery store we shop at and it didn't used to be there and I think they put it there for me.

Anyways. Today, I wanted to feel independent. So I rode in my moms car where we parked in a handicap space and walked slowly in and I held on to the cart and we walked slowly through the store. I made it to aisle 4 before I knew I was going down. I went up to the front of the store and got a drink out of the cooler and sipped on it and made it to aisle 9 where the bench was and sat there until mom got to aisle 13 and rejoined her. Then we finished the last 3 or 4 aisles together. And while she checked out I sat on the bench at the front of the store and sat in the car while she loaded the groceries into the car.

When we got home I still wanted to be independent so decided to unload all the groceries myself while mom relaxed since I wasn't much help at the store. Then I made these really pretty parfait things for dessert, then I made green beans and boiled potatoes for dinner, then I tried to make biscuits and they still didn't work (I really think gluten free flour does not rise or something). All this took a couple hours. I did take a 2 hour nap while the gelatin was setting for the parfaits, but other than that I was working like a maniac. And then by the time all the food was done, I had a migraine and was too nauseous and tired to eat hardly anything. I managed to get my green beans in, but that's it. After killing myself cooking all day. Mom made steaks on the grill and I love steaks on the grill. I was so looking forward to it. I could not even barely lift my hand up with the fork in it I was so tired. I did manage to eat my parfait after we got the kitchen cleaned up just because there was no room in the fridge and you eat that with a spoon ;)

While I was eating my parfait, I was strolling through pinterest and saw the below quote and about fell out of my floor. I was already formulating this blog in my head, but didn't know where I wanted to go with it. And this quote slapped me in the face.

"Being an independent women means you can manage without the help of others, without having to prove it."

So basically, I have been spending the whole day trying to be independent BECAUSE it's Independence Day and because I'm currently having an internal battle and spiritual battle of why it stinks so bad of how dependent I am currently...which means that I'm trying to prove I'm independent, which means I'm not independent at all.

So while I'm being all whatever I'm being let's go over some reasons why I'm feeling dependent:
1) I can't cook, clean, or do laundry without an aid of some kind of supervision.
2) I'm getting a wheelchair at 27 and I'm dang excited because in the mean time I'm basically bed bound.
3) I am tired of not being able to make a plan in my life because I don't know if my body will be up to it. I mean I cannot plan an hour ahead of time people. Literally.
4) I'm tired of showing up places and seeing my friends out with each other and being told that they didn't want to invite me because they were scared I would not feel well enough but wouldn't want to say no so they just didn't invite me.
5) I'm tired of my school work suffering because I'm too sick to do it
6) I'm tired of my dog not having an owner to properly play with her and get her energy out because I'm too sick to do it
7) I'm tired of all my money going to doctors, and driving to doctors, and paying for medicine doctors give to me.
8) I'm tired of knowing at least for the time being I'm not gonna be able to live on my own because it's not safe and I will not be financially stable enough to.
9) I'm tired of knowing that I'm a financial burden to my mom and knowing that I will never get out of debt myself.
10) I'm tired of my calendar being dictated by doctor's appointments, treatments, and therapies. I turned off all calendars but my "doctor" calendar which is all the things I just listed and these are the screenshots from June and July (which isn't looking much better than June just was). Between having bad days and so many appointments I have no life. People with chronic illnesses definitely don't lay in bed and collect disability checks while they watch TV all day. They're out trying to get better. Duh.

Each dot represents at least one appointment, some days there were more than one appointment.
Obviously weekends don't count because doctors aren't open on the weekends. 
Except the 15th of June that was lab work. 

Anyways. As you can see by my doctor schedule one would start to feel a little dependent on the whole situation of the chronic illness lifestyle. 

Also, I went off all my heart rate controlling meds on Tuesday and my heart rate hasn't gone below about 115-120 since then and it is completely draining me and making me crazy and not feel good.

I try to remember that God is in control, He has this, He is my peace, He is my freedom. But it doesn't help all the time. But I do have freedom in Him. 

Here I am raising my Ebenezer. Here I am confessing that I am not happy being dependent. I am not happy (all the time) living the life that I live. I am not happy having to schedule my social calendar around doctors appointments. I am confessing to you O God that I am not content, but that's why you are in my life, to bring me peace. To love me and hold me and wrap me up in a gigantic comfort blanket and hold me in the palm of your hand. And when I'm ready, rip off the covers and throw me off your hand and make me be independent, but let me know that I don't have to prove it, by doing all the independent things in one day (heck 1 hour). Teach me how to pace myself Father God. So that maybe I can live to have a 237 year birthday (or at least a 50th). 

Until then I will keep singing this to you: 

"Here I raise my Ebenezer, Hither by they help I'm come
And I hope, by thy good pleasure, Safely to arrive at home
Prone to wander, Lord I feel it, Prone to leave the God I love, 
Here's my heart. O take and seal it; Seal it for thy courts above."

~Come thou Fount of Every Blessing

Wednesday, July 3, 2013

Finally, a diagnosis!

As most of you know (since most of you access this through Facebook), I finally found a doctor who finally diagnosed me officially with dysautonomia. He told me he is not going to classify it because based on my symptoms I fit into at least 5 of the categories, including one of the less desirable ones that may make your life a little shorter, and they are all treated the same way pretty much (not really, but at the beginning) so right now we are just going to worry about stabilizing me and figure out more and classify me further and personalize the treatment in the future.

Now let's back up like 12 years...maybe further than that...actually probably my whole life.

Since I've been dealing with this my entire life I never knew it was not normal to almost black out every time I stood up, or to be dizzy and see stars whenever I was up, to have a super fast heart rate, to feel nauseous when I was standing, to start shaking internally and need to sit down when standing up, etc.

I thought everyone couldn't raise their arms above their head for a long period of time (like to dry their hair) or else they would black out, was extremely tired all the time--to the point that sleep didn't take care of it ever, was short of breath for stupid things like rolling over in bed, got sick after they ate and had to take a nap, got overstimulated by lights-noises-sounds (2 sounds at once absolutely throws me over the brink and makes me have convulsions),  ran into walls and was off balance, was in super immense pain all the time.

I thought everyone always had to have a drink in their hand and their thirst was never ever satisfied,  was either always hungry or never hungry depending on the day, everyone was super sensitive to chemical or any smells, and always felt like they were in a video game and not in reality all the time, like you are a puppet on a string being manipulated by something else and you didn't have control of anything you did (I just thought it was God). Imagine my surprise when I found out this wasn't true for everyone, in fact it was quite opposite.

Since I've been dealing with this my entire life, I thought all this was normal for everyone. It started making my life a little difficult to manage in high school around 16 when I got in a car wreck (11 years ago). Soon after that I had to start taking shorter shifts at work and even then felt I couldn't stand the whole shift and kept asking for a stool. I both was in immense pain and felt as if I was going to pass out after about 45 minutes. My manager was accommodating but thought I was kind of a sissy, especially since I was very active and on a junior olympic track team outside of work.

In college it got really bad, especially after I got mono my sophomore year. I never recovered. I never had energy ever. If I stood for longer than 20 minutes I was going down. This downward spiral began 7.5 years ago. I went to multiple doctors and no one could figure it out. I had a tilt table test and it was positive (that means I passed out on it--my heart actually stopped on it) but when I came to the doctor said I had something called orthostatic hypotension and a lot of young females have it and they grow out of it and it was no big deal. He put me on 2 meds that made me feel like crap and I quit taking them and just tried to ignore it. I kept passing out almost daily, but wasn't going back to the ignorant doctor.

I got sicker with my colitis, lost my job, and moved to Indiana. I was getting my remicade infusion one day at an infusion center in Indianapolis and met someone who was getting a saline infusion and we started talking. She, after hearing my life long story and symptoms, swore up and down I had this thing called dysautonomia. I go home and look it up and swear I do too--and Orthosatic Hypotension is one of the subytpes of it but the stupid doctor in NC didn't tell me this, just that I would grow out of it and it's no big deal.

I went to a cardiologist in a town I live in and he says I do in fact have something wrong with my autonomic nervous system, but he can't figure out how to treat it, so he sends me to Indianapolis. I see 2 cardioligists in Indianapolis who don't really know anything, but are doing what they think they know they are doing. The whole time, I am getting worse. Knowing that this isn't going well. Losing most of my function. Getting a wheelchair because now I can't stand up longer than 5 minutes. Getting put in the hospital constantly, etc. So I go on some of my support groups and find a guy who is in Indianapolis who is listed as a POTSy
approved doctor. HyperPOTS (postural orthostatic tachycardia syndrome) is one of the subtypes that I've been suspected to have, along with regular POTS, NCS (neurocardiogenic syncope), and possibly PAF (pure autonomic failure). Anyways.  So I call this doc and he has a 6 month wait, so I wait.

So my appointment with him was Monday. And he was awesome.

At first, he was asking me how I came to the conclusion that I had dysautonomia and I was telling him all my history and he said something to the effect of just because you feel dizzy when you stand up doesn't mean you have dysautonomia...and I was kind of like, oh great, I'm screwed, again. I had just gotten out of the hospital for 3 days the week before and really, really needed this guy to be awesome.

So he kept asking questions. And then came over to do what I thought was just orthostatics (where you usually do blood pressures laying down, and sitting, and standing to see how your heart rate and blood pressure react to position change--hence the name postural orthostatic tachycardia) anyways...I got nervous again because when he started I was sitting so I knew we wouldn't get a good baseline since I wasn't at my most relaxed laying. He did the sitting, then had me stand up...

Then he did something I've never seen, and the people I've talked to since then with dysautonomia have never seen. He twisted my arm some weird direction and inflated the BP cuff all the way and put a clamp on what I think was my AC vein and started deflating it some but not all the way and listened to my blood pressure and did some weird inflation and deflation things but never all the way out or in and only like one pump at a was weird and I wasn't watching or paying attention because I thought he was just going to do regular orthostatics. But anyways. All the sudden he goes, sit down now. I said, why. He said, because you're about to pass out, duh. So I sat down.

Then a miracle happened.

He goes, "yep, I'm a believer, you got it bad, in fact, you might be the worst case I've ever seen."

Then, I just start laughing hysterically...

He asked me why I was laughing. And I said, I've been to about 20 or more docs (including other specialties ruling other things out), over a period of 7.5 years after feeling bad for 12 years, with people thinking I'm crazy and a wimp or a weekling and you just told me I'm not crazy for the first time. You just validated me for the first time in my life. You just said that I'm not a liar.

He said, yeah, but I said you have a really bad case...and I said I don't care, I have a case. Period.

Then we talked about treatment. We are starting over. We are taking me off all my heart meds that control rhythm and blood pressure for a month to see what I'm doing by myself (to try to see which type of dysautonomia I really am identifying most with). Then we will reassess after that. We are putting me on florinef which is a mineralcorticoid that helps you retain fluids which helps stabalize blood pressure and heart rate supposedly and we are keeping me on my IV fluids for now.

It's going to be a really long, hard month off my meds cold turkey, on the new med (that I was on a long time ago and reacted horribly to--but we are trying again just to make sure), and having 9 days of clinicals in there including 5 days where I have to drive a little over an hour each way and work 8 hours so it's an 11 hour day...long 6 treatments or doctors appointments in there. But. We are getting answers. And I am getting help.

And it's help from someone who know's something and validates me. He even knows the magic words to use to validate someone with this condition. He told them to me when I was walking out of his office. He looked me straight in the eye and said, "Megan, you aren't crazy, you have a horrible condition, and I'm going to do everything I can to get you some quality of life back." He is proposing quality of life. Even if it's 20 minutes of quality of life, I'll take it. That's an awesome gift. So was seeing this when I got home:
12 years after onset of nagging symptoms, 7.5 years after onset of debilitating symptoms, it's finally official. I got's dysautnomia y'all. 

"...His validation just made it all the more true. I haven't stopped thanking him since." Marlee Matlin

Monday, July 1, 2013

Remembering Why Life Is Good

Anyone who knew me about 4 or 5 years ago knows I was obsessed with the company Life is Good. I wanted all their shirts and hats and mugs and bumper stickers and, well, everything, because Life was good...and I wanted everyone to know I thought so.

Lately, I feel like I've been letting everyone (including myself) know that I thought, currently, life was bad. That perception has been getting me in a funk.

So I'm writing this blog to let you know why in fact my life has been not only a good life, but a great life, no matter what.

It's gonna be a long one, so sit back, relax, and enjoy.

I started out as a cute little thing and enjoyed doing things like fishing and crawling and going to the zoo:
Me at the 3 rivers festival
When I was in elementary school, I was already a star. I was in the recycling club, I won all sorts of reading awards, and I won first prize in the science fair almost every year. 
1st place science fair 1993
In middle school, I started playing bassoon in 6th grade (who does that), got to go to Myrtle Beach with the Beta Club to present my Rube Goldberg like invention that I believe was to give a dog a treat, went to Washington D.C. for an 8th grade trip, was in youth group and got to go to Lake Junaluska a retreat center and made this pretty awesome mural out of paint chips and learned how to be a puppeteer, and went to the 8th grade dance with these lovely ladies (mural and ladies pictured below). 
The mural
8th grade dance
In high school, I started out at Academic Magnet High School and had a blast. I loved learning, but then I went through some emotional stuff, so I went to the public high school (oxymoronic, right?) and didn't have as much fun, but I was closer to home and could fade into the background more. I got more into running and track. I had a boyfriend (who I swore I was going to marry, and he did too, and we almost did, several times). I worked at a movie theater (which ended badly) and Piggly Wiggly (which was awesome). I fell in love with environmental science, I went camping, and hiking, and white water rafting. I was in student council. I went to the beach (a lot!). I made awesome friends, that I am still friends with. I was in the astronomy club. I went to prom. I had and wrecked several cars. I did a lot of stupid things, as most high schoolers do. I really lived in high school, and it almost killed me a couple of times ;)
Colleen, me, and Melissa at Piggly Wiggly :)
At one point in life both these cars were mine, chilling on the trunk after a run.
Student Council Convention Skit Prep
My award after 1st place in my age division after a 5K
Camping with the Allie's 
Prom with the guy I  thought I was gonna marry
Next was college, and it was a blast, and I fell in love with the town, so I stayed there for what I thought was gonna be forever. Well, I guess I will get there in a minute. 

In college, I was really active. I joined Campus Crusade for Christ right off the bat. I joined a freshman girl's Bible Study and between Crusade and the Bible study that was pretty much my core group of friends throughout college (mainly, there were definitely others). My freshman year, I swore I was gonna be a preacher, so I took a trip to divinity schools all over the Northeast like Yale, Columbia, etc so we got to go to NYC also and that was fun! I secretly had a kitten in my dorm room for a while. I joined the Helen Foil Beard Society since we didn't have sororities or fraternities and that was another good core group of friends. I started playing bassoon again (and got a scholarship for it). I played in mud, I got packed up in a box, I went to Mississippi to study the blues where they originated. I went to (and planned) Winterfest (the formal) every year. Catawba played my beloved Tarheels in an exhibition game, so of course I went,  and we won, the first 4 minutes. I joined drumline and was cymbal and pit captain at one point or another. I was the music department worker, worked in the registrars office, worked for the environmental science building, and the science building. I took many, many, many long, hard runs through the ecological preserve. I was on student government and a Catawba ambassador. And had many, many, many deep philosophical conversations in certain rocking chairs in the 3rd floor of the administration building and everyone thought I was crazy for doing so. I loved Catawba deeply and really, really, really found out who I was there. It was the best place on earth. 

Crossroads in Mississippi where Robert Johnson supposedly sold his soul to the devil to write blues music.
Leadership retreat in Boone.
Playing Bassoon
Apparently something good was going on on the field I was more interested in.
Some of my favorite people in the world. Capernaum Young Life. 
Me in a box.
Me covered in mud after playing.
The minute and 21 seconds Catawba beat the UNC Tarheels!! 
The first summer of college I got to go on a summer long mission trip called summer project to Gatlinburg, TN through Campus Crusade for Christ. It was awesome! The other three summers, I got the opportunity to work at two awesome camps for most of the time. For one summer I worked at Camp Bob, a camp in Hendersonville, NC for underprivileged kids where they got to go to camp for free and do all the regular camp things and it was so much fun. Then for 2 summers I worked at Camp Royall, a camp for kids and adults on the autism spectrum where they got to do all the regular camp things despite being on the spectrum and in my opinion that was even more awesome. I loved being a camp counselor. After all, I was going to school to run a camp. But God had other plans. But here are some pics from camp and summer project. 
The whole summer project gang
Reunion at Encounter Christmas Conference
After the egg and whip cream war
The juice crew, after the campers were allowed to pie us in the face.
Hiking on the way to camp out. I had dysautonomia at this point and didn't know it. I couldn't keep up and wifey stayed back with me. She's such a good person. :) 
Yes, I was part of the Camp Bob Step Mob, be jealous.
A lizard I found in the staff lounge at Camp Royall.
 Every day he would tell me multiple times, "You're a monkey, clown dog." I love this place. 
Sometimes I think I enjoyed the sensory room more than my campers ;)
After college, and in between some camp breaks I spent my time being stupid in Salisbury a lot of times. Before I was a teacher of course. I did a lot of times. Especially one summer in particular I can remember. But, I think I needed to do that stuff, so that I knew that wasn't who I actually was. I had some fun times in the Bury. I had some awesome jobs, and had some even better bosses. I jumped over fires, I climbed on city roofs with random guys and did nothing but look at the stars, I loved too hard and too fast. But it was fun. 

Me and my boss a little too happy at an open mic night at Las Palmas.
Jumping over a fire.
Yeah, we loved working with each other.
At a concert.
Laying on a city roof looking at the stars, and I don't think I was as drunk as I look. (I hope)
I also had some awesome experiences, that didn't involve having quite that much "fun" but were still a ton of fun and very rewarding. I spent A LOT of time at Port City Java, doing stuff for work, doing stuff for school, doing stuff for life, doing stuff for coffee...haha. I volunteered at an equine therapy camp for kids with disabilities. I volunteered at music camp and Vacation Bible School every year at the best church on Earth. I volunteered with the "challenge team" for Upward Basketball at First Baptist. I was in the BEST Sunday School class ever and went to the best church ever. On Wednesdays, I ate dinner there and then instead of going to Bible study hung out in the library with the library crew with some of the coolest, wisest women I know. Then went to choir (until I got to sick and had to quit). I also did hand bells at church and played bassoon in the church orchestra. I also was a chaperon for the youth group trip to Caswell (a camp on the beach) the summer right before I moved to Indiana. Man, typing all that out makes me really miss FBC Salisbury so much!!! 
Me and the sweetest girl ever taking a water break at upward practice.
Halloween at Saving Grace Farm
Music Camp Production
Fort this place! 
God lives here...the best church on Earth...FBC Salisbury! 
I've also had the opportunity to go on several awesome vacations with both the juice crew and my BFF throughout the years! We've been to Charleston several times. The juice crew went to Savannah, Gatlinburg, and Washington D.C. And my BFF Christine and I have been to Charleston several times New York/New Jersey, and Maine! I also got to go to the Bahamas on a cruise with one of my friends from Helen Foil and Student Government for my undergrad graduation present :)
The juice crew at the Washington Monument
The original juice crew in Gatlinburg
The BFF and I on the cannon at the Battery in Charleston.
Love is all around, in NYC with the BFF :)
Our badly misspelled names on our Starbucks cups on the way from Jersey to Maine :)
Laura and I in the Bahamas
I also used to get this thing called teaching and coaching track and it was pretty awesome too!!! I miss teaching so bad! I really, really do. I loved my babies so, so much. And I'm not gonna talk about it anymore because it makes me cry, and I can't show you pics because of privacy. So you can see a pic of the most bangin' bulltein board my assistant and I ever made! It's called the 12 shapes of Christmas because we made a whole entire song to teach them the different shapes for math that month like 1 golden star, 5 stockings, 6 hexagons, etc. and the shapes in the song correspond to the shapes on the bulletin board. It was quite impressive! 
Also, as a tree hugger, I have a favorite tree that I've visited through the years. It's at Boone Hall Plantation in Mt. Pleasant, SC if you ever wanna go see it. Right out the back door of the house when the tour is finished. 

Allison and I (not the first time)
Brandie, Nicki, and I during Easter break one year
Me after the last Boone Hall Easter service I was able to go too. Sad day. Very sad day.
Now I live in Indiana and it's harder to make a positive list but here it goes (with less pics because I don't have them and this blog has taken an insanely long time to format). 

 I am very, very happy that I have gotten the chance to know my family. Being so far away from them geographically growing up made it hard to actually know them and I am very grateful for that opportunity. I am grateful for SNOW DAYS! They are finally in my life of hurricane days and 120 degree summer days a reality...yet somehow the 100 degree summer days still are too, I thought those would go away, darn. I am super grateful for finding Maryland Community Church. It is definitely no First Baptist Salisbury and not even a St. Andrew's Mt. Pleasant, but it's ok for now and I found a wonderful small group I attended weekly for a year and a half through them. I also have been given an opportunity to start a chronic illness small group there and am very excited about starting that in the fall. I am thankful for the strangest ways of meeting just the right people at just the right time in the weirdest ways, which happens a lot here for being such a "big" town. I am thankful that I am back in school to learn dietetics to hopefully use it in some capacity one day. I am thankful for being able to cook more (when I feel like it, which isn't often) because I actually have food in my house. I am thankful that we joined the Community Supported Agriculture this summer because you get really good veggies and fruits in it. I am thankful for my puppy that I got here Carolina. She is my constant companion and therapy dog. I am thankful for some doctors who appear to know some things. I am thankful for a much better relationship with my mother...much, much better (most days).

A photo shoot my dog and I did the other night...
And I am thankful for a garden courtyard where I can sit in the rain and watch my puppy run around and catch raindrops on her tongue while I smell the roses and make lists like this on a nice summer day.

****Addition: Congratulations if you made it all the way through this. I've been writing this blog for 3 days. I've been looking through pictures and remembering the good ole days while yet another doctors appointment with yet another 'specialist' was looming. I thought I was going to finish it in enough time to post right before I left, but it did not happen. I was trying to remind myself if he had no idea of what to do like all the other doctors that my life was amazing no matter what. Well, I managed to do that. But, he managed to remind me too. He validated me. He did in fact know about my condition and does in fact know how to manage it (hopefully). He did say I have a very severe case, but he knows what he is talking about. So in fact, after all this build up of preparing myself and reminding myself of the fact that life is good. As of about 3 pm today, it really, really became good...and I am happy. More on that tomorrow :) <3 br="" nbsp="">