2013.

I can't believe it's already this time of the year! 2013 has come and gone, and 2014 is now upon us. This year has certainly been life changing, and one roller coaster after another, but overall it has just been such a year of growth for me.

Last night I had the pleasure of ringing in the New Year with some new friends. And we went around the table saying what our most memorable part of the year was, and one of the girls noted how much she has grown this year and she is in such a different place than last year, and I found myself nodding in agreement for me. I am drastically in a different place than I was last year. God has changed my heart and mind in ways I never thought possible, and I can't wait to see what He has in store for me this year.

So as with every year, here is a list of some memorable things. Not everything is on here, I'm sure there are plenty of things I have forgotten…but here it is nonetheless!

• This year I started graduate school! What a crazy ride and it's halfway over!! Graduate school is amazing and I love all of it. Learning more and more about my future career and passion in life is such a blessing!
• I got my braces off!! No more looking like an awkward teen.
• Going on my second camping trip, but this time with my amazing Connection Group. There were some really awesome friendships I made from that group, and getting the opportunity to camp out was really fun.
• Brittney Griner. Enough said. It was such a great experience to see her play at Baylor and watch game after game as she continued to break records and started her career in the WNBA.
• Passing the 3 year mark with this blog!! I never imagined my blog would mean so much to me when I started, but I am so glad that I pressed on and did it. It's amazing to see how far I've come in just a few short years.
• Brinkley turned one!!! Such a mom, I know, but it is crazy to think he is almost two now!! He is such a constant joy in my life and helps me get through everything.
• April 17 was the West fertilizer plant explosion, which followed closely after the Boston marathon bombing. I have personal friends who are still dealing with the effects of the explosion, and being so close to a disaster and the after effects was a very sobering experience.
• Along the same lines on May 20th a tornado ravaged Oklahoma. It's so humbling to see the power of mother nature, but very heartening to see how people stand together a work to help out people in need.
• Going to Mayo. Well, this event alone has already gotten me 3-4 separate posts that you can check out for the full story. But my world got turned upside down this summer! Finally after 24 years getting a full and complete diagnosis - though different than expected, was indescribable. And then getting to spend a month with amazing people who struggle with chronic pain as I do, and getting to go on a journey with them to remember how to live life in spite of everything and being in control of my life again. Chronic pain is always going to be a part of my story, but it's not what my story is about anymore.
• Government shenanigans have been rampant over this year. With all the problems going on in Syria and potentially attacking them, and then the government shutting down….craziness. I won't go into more of that though.
• Miley Cyrus. Enough said.
• Baylor Scott & White merger has been a huge change this year!! Things are still changing where I work and there are many changes to happen in the future, but it is exciting to see all these huge companies coming together and working as a part of the largest not-for-profit healthcare system in Texas! It is such a blessing to not only have a job, but to have one I love and to be surrounding by amazing people is an even bigger blessing.
• This year a new head pastor began at my church, and he has also been such a blessing. I think he fits well with our church and is leading it in a way that is God-driven. He has a way of sharing the Word that is convicting and always is right on point! 
• This year, unfortunately as is a part of every year, there were losses. I had three friends within a pretty short time frame lose one of their parents. And that is SUCH a hard thing! I cannot even imagine all that they are going through, but I know that Heaven gained 3 more angels, and even more this year. Loss is unfortunately part of this life, but it is comforting to know that there is a life indescribably better than this one waiting for those of us who believe in Christ.
• Cornerstone. This semester a great group has started that allow singles from churches all over Waco to fellowship together. It's so hard to meet singles my age, and that's what this group has allowed me to do! Being able to socialize and be around people in my stage of life who aren't married (not that I'm at all dissing young married couples) or having kids yet, and having a network of friends in town. Most all of my friends have graduated and moved all over the nation, so it's nice to have some really great people so close!
• Catching Fire!!!! I waited so long for this movie to come out!! And it was definitely good. The books are of course much better, but the movie is very true to the book and I can't wait for the others to come out! 
• Nelson Mandela passing. Nelson Mandela has been such a global icon for so many years and it was definitely sad to see him go. But he had such an incredible life and left such an impact on millions of people. I can only hope when I go that I leave an impact on someone.
• Becoming a DTR. My new year ended with passing my registration exam to be a diet tech! It is such a relief to have that finished, and now I begin having initials behind my name! I'm really excited to see where my career is going to go from here!
• This year I had New Year's Eve plans!! Most years I don't really do anything, but this year I got to celebrate with some really awesome people and it was a really great way to end the year.

So that was basically my year in a very tiny nutshell.  I hope this new year brings you joy and happiness!

Dysautonomia Awareness

So, October was much busier than I had ever intended, thus my great plans for blogging consistently for dysautonomia awareness has fallen to the wayside. BUT! With two days to spare I have a (what I think) pretty cool way to see dysautonomia from our eyes. I've said many times (or feel like I have) that having an invisible illness is sometimes a lot more frustrating than one that can be seen. And though I have my fair share of physical problems to add to the mix, I still more often than I would like get comments like "You look so great!" "You're not sick", or "You look fine". And it's really hard to not take it personally when people don't understand that I'm not being lazy or anti-social, but I generally just feel terrible and sometimes can't keep up. So here's in a nutshell what someone with an invisible illness, specifically dysautonomia, wants you to know about them.

I took the basic framework of this from another blog that is completely dedicated to dysautonomia awareness, and think it's a great resource if you want more info! (http://dysautonomia.weebly.com)

Most of our hearts are on overdrive....all the time. 

Just standing up makes my heart race. Typically it's around 100, but I can just be sitting around doing homework or something and it can easily be over 120. And when I work out, which is more of a "warm up" to most athletic people, I have to be careful because it's averaging 155-160. So having dysautonomia makes us a lot more tired than healthy individuals, because we have to use about 3 times as much energy to do regular things. Which is why sometimes after a long day, I don't feel like I have enough energy to go out at night, or for example this weekend I went to a wedding and had to leave earlier than a lot of my friends because I was so tired, and I don't think they really understood. And on not so great days when our hearts are racing, the aching of our bodies gets worse, and you get to add lovely things like dizziness and nausea to the mix...so sometimes we need to rest!

One thing that for me in particular has gotten significantly worse this year is my memory. I legitimately don't have much of a short term memory anymore, sometimes I have a hard time finding easy words, and I'm just really out of it some days. And when I comment to someone that I don't remember something very easily, most of the time I get a comment like "Oh, my memory is terrible too". I get that some people don't have great memories to begin with, but it's not the same. I used to be very well-known in my family for having an insanely good memory...and now it's gone. I have to literally write down everything or I won't remember, even simple things like calling someone after work, or when a good friend comes in town. This has been one of the most frustrating things to deal with, and has been hard to compensate for. You never realize how much you rely on your short term memory until it's not there anymore. In dysautonomia world, we call this lovely symptom "brain fog". There isn't enough blood flow to the brain, and it can effect even super simple things like remembering to pick up milk at the store, or calling someone back in 5 minutes. I think it took a few weeks for even my parents to realize what a real situation this was. At first I thought it was from various medicines I had taken, but then I realized the true culprit. Thankfully, my parents have now embraced it and help me work on my memory, without making me feel like an idiot. If they want me to call someone, they write out the number and tell me what to ask for so I remember. Or they help remind me of things I need to do, and remind me to write things down so I don't forget. This is another thing that I sometimes get ridiculed for with people that don't understand how bad it really is. This is a really frightening symptom that a lot of us deal with, so the best thing is to realize that we're not idiots - just trying to deal with something we can't control. So if you know someone with this issue, kindly remind them of things they need to do, or write things down for them...but don't make them feel dumb for not being able to remember on their own.

Exercise is another area that can be hard for someone with dysautonomia. I am blessed that my condition is not very severe right now, and I know several people who are already much more progressed and are further limited than I. Our bodies are already running overtime doing simple things like standing and even sitting...so imagine how much harder it is to put your body in a situation like exercise that is strenuous even for a healthy person! Since going to rehab this summer and finally beginning an exercise regimen of my own, this area has taken a lot of mental adjustment for me. I completely would love nothing more than to be able to run and work out and get super fit and ripped....but that won't happen. And for a long time, when I would work out with friends, I felt like I was holding them back because I couldn't do nearly as much as they normally did. My entire work out was less time then one of my friend's warm ups. But I've realized that I can't compare myself to them. The amount of exercise I'm doing now is more than I've ever done in my 24 years...and I can tell I'm getting stronger. So even if it's not as intense, I'm still working to be as healthy as I can, and doing it on MY terms. This can be especially hard for people that were very active before getting sick, because now exercising too hard comes back to bite you pretty hard. So be patient, and don't patronize them for smaller workouts. Any workout is something worth congratulating them on, and took some good effort. 

Another big thing we have to deal with is temperature control. With dysautonomia, circulation in the body is pretty poor, so regulating our body temperature is a lot more work. And many of us, myself included, can't sweat at all so that makes it even harder to stay cool in warm weather. And consequently, being too cold makes me feel completely terrible, so I have to be careful no matter what the weather outside is. And there are random symptomatic days for me that are really bad. I can only equate it to having a fever - you constantly are hot then cold, then hot, then cold...back and forth all day, which is rather annoying. Layers of clothes have become quite handy, so I can more readily adapt regardless of where I am. 

One last area I will talk about is sleep. Insomnia is a chronic problem for us, which makes our already fatigued bodies even more tired! Our bodies are almost always in "fight or flight" mode, which makes it really hard to relax. And because of the poor circulation, moving around tends to be common. Think about laying down, trying to go to sleep, with your heart racing...not so pleasant, huh? And the fact that the nervous system controls sleep doesn't help the situation either. So it may get old to keep hearing someone say they're tired or didn't sleep well, but it's still just as true and even more annoying for us to say as it is for you to hear.  

Well, if you made it this far, I truly and sincerely appreciate it. Dysautonomia is not very well known, even in the medical community, so it's up to us to increase awareness!! Don't be so quick to judge a person by how they look, because they are a myriad of invisible illnesses. So try to see what that person is going through, and help them in ways that validate how they feel, and don't make them feel inferior. And when in doubt of how to help, just ask them! I guarantee they will appreciate that more than you trying to do something that you think is helpful when it actually makes the situation worse. 

I have been so blessed with an incredible support system full of family and friends who love me and want the best for me. And it really makes me happy when someone asks me questions, because it means they care enough to know more. But on the other hand, I have a lot of friends who don't understand and that does make it harder, and I know I am not alone in that. Yet another reason awareness is so important!

I love you all, and hope you are well. :) 

Home!

I am back in the great state of Texas! I have literally never been away from home this long, and can't say I ever want to again! I missed my job, my apartment, my dad, and most importantly...my dog! I am very glad to be back, and am so grateful for the whirlwind that has been this last month.

I won't make this super long like my last post, but I feel like to properly go through this journey I need to document it. Going through this program was....transformational to say the least. I realize that is an incredibly big and important word...but it really fits. Before I left, I was in such a hole of feeling completely hopeless and thinking that my pain was going to be unbearable and controlling my entire life...and that wasn't a life I wanted. Before I would even get out of bed I did a mental body scan to see how bad my pain was that day or how exhausted I was. Then, depending on the severity I would either decide prematurely to just cancel my day and stay home to rest, or if I felt really great I would go and do everything I had been putting off on bad days, only to crash the next 2-3 days making up for it.

Now everything is different. This program gave me hope again, and showed me that I can be in control of my life, not my pain. Over the past month I have learned how much my negative thinking has impacted me emotionally and physically, and how they are all so complexly connected. I've learned tools in occupational therapy to make doing daily tasks like grocery shopping and laundry easier on my body. In physical therapy, in just three weeks, I TRIPLED the distance I can walk in five minutes, along with becoming much stronger in other muscle groups. And I learned invaluable coping skills that I incorporate into my life every day, such as relaxation, distractions, leisure, and self-care activities.

If you asked me on a scale of 1-10 if my pain is the same as it was before, the answer would be yes. The chances of it being this way the rest of my life is incredibly high. There is no more looking for a cure or treatment, but switching into management mode. But putting it in a different way, imagine a pie chart. Before rehab, pain consumed probably 90% of my circle....and now it's about 10%. And instead of focusing on my pain and letting my pain decide everything for me, I now decide. And that huge chunk is now filled with my friends, work, new hobbies, relaxation, exercise, and anything else. I have learned valuable moderation principles so that instead of going hard on good days and then crashing, I can have enough energy everyday to do the things I need to, without sacrificing anymore of my body.

Do you know how many positive thoughts it takes to overtake a negative one? 14. Who has time to sit there and think of 14 positive things about yourself for EVERY negative thing you think?? I certainly don't. It makes more sense to just think positively to begin with! It is truly incredible how much the mind and body are connected, and negativity goes a long way physically. Not to say that everything terrible in your life will magically be fixed if you just think something positive, but it sure makes the situation a lot more bearable, and I bet you'll find yourself a lot happier as well.

There's no way to truly explain everything I learned while I was there, but it is an experience I will never forget, and one that has changed my life. It was exactly where God wanted me to be, and it was completely in His plan, with His timing. The people I met there were completely incredible, and absolutely made the experience what it was. Being surrounded by people who truly understand how crappy life can be with chronic pain, and who are going through the same transformational experience I am, going through the same topics and routines. They were/are a constant support system. We learned from those who were farther along in the program, and then taught the newbies the ropes. I don't think I have ever seen such a constant and true meaning of "pay it forward" than the people I met there. And many of us have plans to reunite and hang out soon! They will all forever hold a special place in my heart.

Chronic pain will always be a part of my story....but it's not what my story is about anymore.

Rehab!

Greeting from Minnesota!

I've had two days of orientation and two full days of rehab so I figured it was time for an update! I know many of you have asked how I am doing and what I am up to, so this is the best way to update everyone all at once. And for those of you thus far that have sent me encouraging texts, I really appreciate it!! Getting them breaks up my day a little bit, so keep them coming!

Weather wise it is basically like a vacation here! I keep getting texts from friends and family saying it's 104-105 at home, and here this morning it was a chilly 67! I am definitely getting teased for being cold by all the residents here who think this is summer weather, but it really does feel great!! And the scenery and landscaping here is just so beautiful, everything is green!! Which is quite a change from the yellow-brown grass back in dry Texas. And as I type this it's raining outside, which is something I haven't seen in quite a while! It did come unexpectedly and is causing plan changes, but it is a welcome sight :)

Well, I guess the biggest piece of news and the best to start with is.....after almost 24 years I am finally completely diagnosed! It is a big shocker, so even I don't really know how to feel about it as of yet. But it turns out I do NOT have muscular dystrophy. Yeah. Drink that in. It's really crazy to think your whole life you have one condition, so much that it in a way becomes part of your identity, and then one day you wake up and that's not true anymore. I won't go into extreme detail on here, but if you want the details please feel free to text or message me, and we can talk :) But essentially it seems that my birth mother had an infection while she was pregnant with me and never got treated for it, and because of that I have all these problems. It's been an emotional rollercoaster for sure, especially since the infection she had is one that is routinely checked and would have been a super easy fix, but she did not seek prenatal care, though she reported that she did. The neuromuscular component very much mirrors MD and the tests they did for that diagnosis did show muscle and nerve damage, so they just assumed MD, especially given the rarity of this infection ever having permanent side effects. 

So what does that mean in terms of treatment? Pretty much the same as before. There is no cure or treatment, it will just be managing symptoms as they come along. But the silver lining, which is truly an answered prayers and alleviates so many of my fears. is that it is NOT progressive. The damage that is done is permanent and irreversible, but as far as muscles and nerves go it will not get any worse. What a load off!! I'm still processing how that is going to change how I look at the future and what numerous doors this now opens, but it's definitely a huge thing to be grateful for. The chronic pain is still unable to be explained, but it is now basically known that I will have it for the rest of my life, so treatment has now gone from a "Why is this happening, and how can we stop it?" to a "Okay you have this pain, how can we manage it?". Which is exactly what this rehab program is teaching me. It is such a comfort to be around so many others who are walking the same path I am and dealing with chronic pain and exhaustion. We all truly understand what it feels like and can help each other in a way no one else can. And the staff is incredible! Everyone is super nice. Again, there's a lot to explain and I don't really want to write a novel, so if you have specific questions or want to know more about it just message or text me :) But basically I have group therapy sessions where we tackle specific topics like The Science of Pain, Addiction, Spirituality, Fear, Anxiety, Planning....etc etc. And we have physical therapy and occupational therapy everyday, so they keep us moving for sure!! And at the end of the day we end with something relaxing, whether that be simply coloring (super legit), or Tai Chi, or something along those lines. I'm already learning a lot about how to change my pattern of thinking so that I can control my life and make my own decisions, instead of my pain deciding that for me. And I'm learning distractions and tools that I can use in those really bad days to focus on something other than the pain. I definitely have a ton to learn still, and I feel so hopeful about this program. Almost everyday we get to hear stories from people that have completed the program and how much better they feel and how much happier they are about life, and that they are completely different people from the pain-focused ones they were when they came in.

Everything in my life feels like it is changing right now, and I'm completely out of control of it all...but God is. He absolutely paved the way so that I could be in this program before school started, and He paved the way for me to meet with my doctor before it all started to get the answers I needed to get the most out of everything I'm learning. I may not understand the "why" of my life (but really, who does?) right now, but He absolutely has everything planned out for me and I can't wait to discover all the greatness He has in store for me.

Thank you again to all of your for the prayers and sweet encouragement. It really helps more than you realize. I couldn't do this as successfully as I am without the incredible support system that you are a part of, and I am forever grateful for that. 

Mayo!

Hello people!!!

I am back in Texas! This past week at Mayo was pretty much the emotional and physical roller coaster I was expecting, but overall it was just covered in God's hand and His guidance, and I can't thank you enough for praying for this huge trip.

I only saw my new neurologist once at the beginning of the week, and the rest of it was test after test after test. Though most of them were painful and definitely not fun, I believe that together they will all lead to something better for me. I suppose I'm still in the "diagnostic" phase, which is what these tests will hopefully help with. They did a lot of autonomic system function tests, some muscular function tests, sweat tests, hormone tests and a bunch of blood work. And when you have crappy veins like mine that is no walk in the park...and I have the bruises to show it.

Mayo is such an incredible place. It is THE most efficient hospital I've ever been in and everyone is SO nice and willing to go out of their way to help. If you tell someone something in one department literally the whole building knows about it. Right after my initial appointment I was given an intinerary with all of my tests and where they were located. And when you check in for a test they give you a little pager and they just page you when you come back! We never waited more than 10 minutes either. It's hard to describe the "culture" of Mayo unless you've been there and experienced it. No matter what people where there for, we all shared a kinship...we were all there for answers. People from all states and even other countries were there, shuttling from appointment to appointment...looking for hope. And Mayo is where we've all found it.

When I first met with my neurologist she was just as perplexed as all my other doctors. I was just waiting for the words of "I don't understand" or "I don't know what to do with you". And while she did have a few comments to that end, she actually is doing something about it! She doesn't see the need to change my medicines or try a new one, because obviously thats not working. So she ordered all these tests to hopefully once and for all completely diagnose me so that we can work on the next step with is treating it. She thinks I will have a lot of success with a pain management rehabilitation program that lasts 3 weeks. The only negative? There's typically a 5-6 month waiting list....

BUT! God is a Provider and one who answers prayers and I have been accepted to this program...for JULY!! So from July 9-31 I will be living in Minnesota and participating in this rehab program. It's a pretty intensive program that includes physical therapy and occupational therapy everyday, and strategizing and learning how to mentally beat my chronic pain. They will help me with practical ways to manage my pain and learn how to take control of my life, instead of letting my pain control it. Although it may not necessarily end my chronic pain, but it will allow me the chance to take control of it. Everyone we talked to seemed very convinced that I will be successful in this program, and I think I will too. And given that it was such an answered prayer and happened so quickly, I know God has this planned for me as well.

So. That's my next step. Feel free to ask any questions or leave any comments you wish! Love y'all.

Dreams.

Some of you know that next week I am going to the Mayo Clinic. I'm getting the chance to see doctors that are experts in my disorder, dysautonomia. Can you believe it, a doctor that has actually heard of my disease?! I'm a ball full of emotions as it comes closer and closer, and I can't help but find the best way to explain it as a scene from Tangled. (Don't judge, it's a legit movie).

Remember this scene?

I've been waiting for 23 years for an answer to my medical condition, and I finally have it...and now I"m about to (theoretically) get answers on how to manage my life so I'm not miserable all the time. So what if this isn't everything I've dreamed it would be? What if I get there and just like every other doctor I've had they tell me they can't help me and don't understand why this is happening or how to help me?

But what if it is everything I dreamed it would be? What if they can take away my pain and exhaustion? What if they understand exactly what's going on and can make my life so much better? That's what I'm hoping for. It was such a God thing that we even got in, and got in this quickly. There has to be a reason for that. God has a plan for me, and while it's scary right now...I'm choosing to trust Him. He's never let me down before. 

And if I do suddenly feel better than I have ever before? Well then I get to go find a new dream. And that's the best part. 

Unwritten.

Reading and writing have always been favorites of mine for my entire life. I was that super cool kid back in the day that took so much pride in my trophies I got every summer for reading 50 books. (Yes, they really do give out trophies for that.) Even now, summers to me mean leisure reading and catching up on my massive "To Read" list that I don't have time for during the school year.

I just finished Charles Martin's newest novel Unwritten. If you haven't read any of his books, super loss for you. I've read all of his books and they have all been incredible. When Crickets Cry, Chasing Fireflies, and Maggie are a few of my favorites. This new one may be my ultimate favorite of his, and I totally recommend it. But in it he says so fluently captures what I love so much about reading, and I guess in extension about writing. The thing I always loved about the library was there were literally thousands of books, all waiting to be read. Their stories waiting to be told, and I was all too ready to be immersed in them. I absolutely love getting lost in the story, being so pulled in to a story that you hate to do even the most basic things like eating or sleeping because you don't want to set it down. Reading for me has always been an escape. No matter what is going on in my life, I can open a book and get lost in a story and be in it for hours. And writing has always seemed to go hand in hand with that (hence why you're reading a blog right now). I tried making up stories when I was younger and writing them, but I've always just been better at writing out my thoughts. Even when things go awry in a friendship or I'm just overwhelmed with my life...writing it out makes it make sense. "Writing became the outlet for the one-sided conversation inside my head. The only place I knew complete expression. A thought encapsulated. A breath deep enough to fill me. Punctuation with certainty. Writing was how I worked out the goings on inside. The act of making story made sense of what I couldn't make sense of. Like being an orphan and never being adopted." (Charles Martin, Unwritten)

Now, I may never be a New York Times Bestselling Author like Charles, or write screenplays for Oscar winning movies. But I do have this blog. And as long as I can help it, I will keep writing and trying to make sense of the crazy thing called life. God has given me this life for a reason, and maybe one day my small little blog will have an impact on someone else, and feed their intense desire to read and escape into a story. And coincidentally will feed my need to write. I've always loved being a nerd. I love learning. And maybe my God-given nerdiness will somehow lead to something bigger than I ever intended...or maybe it will never go farther than your computer screen. If nothing else, I have it for me, and have my story...and the exciting part is what is to come.