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.

Helpful info!

Really creative title, I know.

I've been doing a lot of everything since my last post. A lot of crying, yelling, sleeping, loving, living, working, researching, and more. Finally having a complete diagnosis is such a relief. And being able to google my newly diagnosed disorder and read blogs of people who truly understand exactly how I feel. They've been through the exact same frustrations and pains I have. And as much as I love my friends and family, they just don't understand everything. I am going to Mayo Clinic this June to be seen by a specialist and his team who know the ins and outs of dyautonomia, and that is SUCH a HUGEEEEEE answered prayer!!! Finally a doctor who not only has heard of this disorder, but can hopefully get me on the right track to managing my symptoms. But as I have done research to learn more about my condition and how I can do little things to feel better, it made me realize that my friends and perhaps other random people may want to know more. So this blog post is for you! Explaining what dysautonomia is, some symptoms that I'm currently dealing with, and how to help! Not just me either, but these tips are good for anyone really.

So. What is dysautonomia? "

Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. 

So basically anything your body automatically does like digesting food, regulating your temperature, blood pressure, etc etc....mine either can't do, or it takes longer than normal to do. Which is why I am so dang tired all the time! My body is working crazy hard just to do normal things, and then I put it through the extra stress of my daily living. 

Here are a list of some symptoms that people with dysautonomia have. I've bolded the ones I currently experience. But like other invisible diseases, like autism, no two cases are alike.

-Dizziness

-Fatigue

-Fainting

-Increased heart rate (tachycardia)

-Low heart rate (bradycardia)

-A variety of digestive and urinary problems

-Tingling/numbness/pain in the extremities

-Problems swallowing

-Chronic pain

-Fluctuations in blood pressure

-Shortness of breath

-Chest pain

-Sleep disturbances

-Cognitive impairment

-Chills and/or flushing and hot flashes

-Feelings of anxiety

-Headaches, migraines 

A lot of people have been SO sweet through this hard time, and many of them text me and tell me to let them know if I need anything! Which I totally love and is so sweet, but one of the hardest things to deal with is losing my independence. I HATE asking for help. Because to me needing help doing everyday things means I am weak. But I'm quickly learning that allowing people to help me and do little things is such a relief for me, and saves me energy to do things that I have to do like homework. So unless things are super bad, chances are I won't ask for help. But chances are if you straight up just tell me you're doing something, I won't say no. So here are some helpful things YOU can do to help me out, and like I said this could be applied to many situations. But sometimes I don't like telling people little things (like #1) because it makes me feel bad or weak like I can't keep up. But let's be honest...I can't. And having understanding friends makes things unbelievably less stressful. I took some of these from another blog, so some are mine and some are a mix from other sites!

“How can I help?”

1) Go slow!!! I know you may be thinking you're walking at a normal or even slow pace, but it's really hard for me to keep up. So when walking anywhere or going up stairs (if there's no elevator) takes me longer than you. 

2) If I choose to share my anger or frustration with you...sometimes you just need to let me be mad. 

The reason I've had so much trouble (until now) talking about my illness is because I never, ever want it to define me. But I do have to be realistic and recognize my limitations. It was, and still is, an emotional roller coaster, one day I could be totally fine and completely loving life, other days I'm angry, frustrated, and feel helpless. Sometimes the most comforting thing during this time is having friends that tell me I have their support, and that they understand why I'm frustrated. But there is a difference between validating my feelings and pitying me. I don't want pity. Yes I have two incurable diseases....but that doesn't make me any less of a person. Yes 99% of the time I need encouragement and want it. But think about it, if you're really angry about a situation and are venting to a friend and they never recognize your feelings - venting is no help. I appreciate the sentiments and encouragement, but if I'm venting....let me vent. Sometimes I just need to be mad and get it out. 

• Validation: it is different than empathy or sympathy in that there is no “poor you”. The message when you are validating someone is “you are entitled to feel/act the way you do, it is a normal response”. You are giving the person “permission” to be upset, distressed, or however they may be feeling.

• Empathy: There is a HUGE difference between empathy and sympathy. This explanation really puts it into an easily way to see it: 

Imagine I am stuck down in a huge pit. Sympathy would be you discovering me in the pit, crying with me about being stuck, and jumping down in the pit with me. Then we both would wallow in our misery. Empathy would be you looking down at me in the pit, validating I am right to be distressed about being stuck in a pit, and then saying “I will do whatever I can to help you get out of this pit”.

It is okay to cry or be angry at the illness with me, just do not make that all you do. Stopping there doesn’t do much to help the person. Validate your loved one, but never say you understand exactly how they feel. Let them know you will never understand exactly what they are experiencing, but you are there for them to to talk to and you’d like to learn/understand more about their condition. Ask if there is anything you can do (errands, visit, cook) to help. Better yet, surprise them by sending them cards every so often letting them know they are on your mind, pop in with their favorite candy, or take the initiative to learn about their condition.

I know a lot of people don't know much about my condition. Shoot, most of my doctors don't even know. That's why I'm doing this. To help share on a broad spectrum a little insight into my life, and seriously ask questions if you have them! People are so scared to ask me questions because they're afraid it will hurt my feelings or something...nope! PLEASE ask!!!! I love educating people on my diseases and I think it helps them understand, and then in turn helps them to help me.

3) Never make statements like “but you don’t look sick” or “you look really healthy, you’d never know you’re sick!”

Obviously you can tell I have muscular dystrophy by the way I walk. But lately when I've explained to friends all of this stuff I've been going through they have said they had no idea I was going through it all. Looking at someone with an invisible illness, you’d never know anything is wrong.

4) Ask if there is any way you could help me out. If I say no, do something little anyway.

I sort of mentioned this before, but it's crazy hard for me to accept help. I'm getting better at it, and realizing how much it helps...but I'm extremely hard headed and so I still sometimes reject offers of help. Not being able to do little things like cleaning my apartment anymore to me is just a sign I'm getting worse. I didn't want my mom to have to come and clean my apartment because I can't. I didn't want to admit I needed help bringing in my groceries or even have someone go with me to get them. These things seem so small and simple, but it saves me so much energy to not have to do them. So I'm trying to be smart and maybe take a hit to my pride if it means I won't feel as miserable that night when I go to bed. Even something as small as someone sending me a card or a sweet text can really brighten my day and give me a boost.

Here are some ways people have helped me I really like:

• ask if you can come over, lay around, and watch TV or movies with me...or even do homework! (this one is a HUGE one, it doesn't sound like much, but just having someone around makes me feel better) 
• text/call me and tell me about a fun memory that just popped in your head
• tell me if you really liked a blog post! I spent a lot of time on these and it really means a lot to know that a) you took time to read it and b) it helped you somehow or you liked it!
• send me a card every so often
• learn about my illness
• offer to give me a ride - so often (given my epic parking spots) I usually drive places. Which is totally fine - I love driving! But some days I'm just really tired and it's such a relief to have someone else drive! 
• send me a happy picture of us
• give me lots of hugs, cuddles, and kisses

5) Learn about my illness

I feel so appreciative when people take the time to learn about my illness. If you are one of my family members or friends, here is a great website to learn more about dysautonomia :http://www.dinet.org/

Just know going in that you are going to come across a lot of “magical” remedies, and causes of any invisible illness, that are simply not true. Please don’t share them with the person you are trying to support. Unless you feel it isreally important, I recommend not telling the person how to get better. Trust me; they are trying. If you must share a remedy, fact, or treatment, phrase it like this, “I was reading about dysautonomia the other day and saw a treatment called/involving ______________, what do you think about it?” This gives the person a chance to let you know they have or have not heard about it. Nothing is more annoying then someone telling me I need to do "x" and I'll magically get better. Obviously if I knew that, I would have done it! 

The reason learning about someone’s illness helps is because it shows you care. Just saying something like “I know going to a basketball game is a big outing and I understand it's too much for you right now” or “That sounds hard never knowing how you will feel when you wake up” is helpful and much appreciated. It shows empathy and validation(see suggestion number two). Ask the person what types of remedies they are using, for me it is lots and lots of salt, compression hose, and lying at an angle. When they are at your house, show them somewhere they can lay down if needed. All of these things are signs you are trying to learn and are appreciated SO MUCH!

6) Remember there is a person in there, they are not just an invisible illness or diagnosis

Whew! I know this has been long, and kudos if you've made it this far. It means a lot. I hope that this has helped a little bit and given you more information about how to help a friend, or specifically maybe learning more about what I deal with on a daily basis. There is no way I could do this without God, and the support of my family and friends. And education is half the battle!! When someone is having a rough time I just want to know how to help, and hopefully this has helped you. So always ask questions if you need clarification or an answer. These tips are ones I would recommend for anyone going through a chronic illness, and think they all hit home really hard for me. I love you all so much!!!! 

Gettin' Real.

Hello readers! (If there are any of you out there…)

I realize it has been quite a while since my last post, which makes me sad. I’m going to work at getting back on my posting train and post more frequently like I used to. Life has just become so chaotic it seems since my last post. Cliff note version of a “catch up” would be I am now almost halfway through my first semester in graduate school, and it is quite a change! I really do enjoy it though, and am really excited to keep learning more about things I actually care about and have a passion for. I’ve also started working as a diet tech in a hospital, and my pure joy of loving the days I work is such a godsend and a message that I am most definitely in the field He has chosen for me.

Now onto the reason for this post. I realize this is going to be really long, and chances are it will be several parts, written on different days with different additions. This post (and the potential few to come) are really mostly going to be used as a catharsis for me. I’ve always found I can write out my thoughts better than saying them, and in essence that’s why I started this blog. It’s a way for me to cope with everything going on in my life, and if it somehow helps someone else…then that is just how God is using my blog. So here it goes.

This season of my life has been really tough, to say the least. I can probably go back through the posts of this whole blog (about 3 years worth!! Crazy.) and find posts of when I have been in valleys and filled with frustration…yet this time it somehow feels different. Deeper. Harder to get out of. I have physically been in a “flare up” of sorts for the last 2 months, and it hasn’t gone away. I have recently discovered the reason I am in pain and exhausted everyday is a result of an autonomic disorder in addition to my muscular dystrophy. So we sort of know the reason….now its finding a way to get rid of the symptoms. I’ve accepted my baseline amount of pain and tiredness…. I’ve lived with it every day for as long as I can remember and that’s just my “normal”. But these flare-ups are excruciatingly painful, and it affects my daily life more than normal…and forces me to adapt. I find myself some days in such a deep place of frustration and exhaustion. I’m so unbelievably tired of pain, of being tired, and of having to deal with this disease and all that comes with it. I don’t really like complaining about being tired or in pain, and usually push through it and go out and do things. I’ve always figured if I’m going to be in pain I might as well be out living and having fun instead of sitting at home sulking about it. But now my pain is to the point where some days I can’t seem to push through it, and my limitations are growing. I now have to ask for help for things I have been able to do on my own such as grocery shopping and cleaning my apartment. And while those who help me do it with such Christ-like attitudes and do it totally out of love…to me asking for this help and admitting that I need it seems to be such a negative thing sometimes. It feels like I am a broken, disabled person who can’t do normal things that everyone else can. And when I get into that thought process, which Satan knows for a fact is my weak spot, he comes to attack and gets me into a “worst case scenario” thought process which allows me to fabricate this future of being in a wheelchair full time and not being able to do anything for myself. Logically, I know this is ridiculous to fixate on right now, especially because I have NO idea what God has for me in the future. But sometimes it’s hard not to go “there”.

I have talked to several very wise people in this “season” of my life in a desperate attempt at answers. Answers for why this is happening, when it will be over, why it hasn’t ended yet, and just how I can get through this in one piece. I know that this will not be my last valley in regards to my health….and me being the planner I am, I want to have a really good battle plan for the next time. But I really need that battle plan now. One person in particular really has/had me thinking of things in ways I’ve honestly never thought about before. So here comes a lot of the catharsis I was talking about, but perhaps it can be morphed to someone else’s situation as well. To me talking about my pain and pointing it out, in my brain, means my disease is somehow defining who I am – which is something I have busted my tail for my whole life trying to prove untrue. But it was pointed out to me that my lack of being open and vulnerable with people and allowing them to help me is a huge form of pride. And it is making huge assumptions about my friends  - that they will somehow look at me differently or judge me because I’m struggling. Assuming that they won’t carve out time to help me do little errands I can’t do by myself. I know my friends do not fall prey to these assumptions and my closest friends would probably be really upset with me if I didn’t share when I needed help and was struggling. I know I’d be upset if the table was turned. And it was also pointed out to me that by not sharing my struggles with the community of believers I’ve been given, I’m not allowing God to use them to love me and show Himself to me through them. He gave us a community to walk through this life together with, and to show Himself to us in several ways….and by not asking for help I am cutting Him short and not allowing my friends to be God to me. Which isn’t fair to them, God, or me in the long run. My pride can’t overcome my need to see God.

So I guess here’s the big principle I’m learning: IT’S OKAY TO BE BROKEN.

It’s okay to be upset, frustrated, angry, sad, and all of that. It’s okay to let down my guard and not have my brave “everything is awesome” face on. But I can’t stay in that place that Satan wants me to. He wants me to think that God has left me, or somehow doesn’t love me because I have to suffer with this every day and haven’t been physically healed. But none of that is true! God has created every person – including those with disabilities – in HIS image…He doesn’t make mistakes. I just finished the book given to me by one of my spiritual leaders, called Joni. It’s an incredible autobiography about a woman who had a diving accident at age 17 and became paralyzed. She has absolutely no feeling or use below her collarbone. And though my case is not as severe as hers or many others, it was so comforting to read of someone else’s struggle who truly understood what daily pain was like, and the frustration of not having function of your arms and legs. It was so refreshing to go through her struggle with her and know that I am not alone. It was also really encouraging to read how she has come out of an intense, deep valley and now sees her wheelchair and accident as a blessing and fully embraces the plan that God has for her. I am definitely not at the point where I see my MD as a blessing….but I want to fully embrace God’s plan for me like Joni did. I want my life to be completely saturated with His love and for my life to be nothing but a glorification of Him.

I also loved that throughout the book she pointed out specific scriptures she held on to, and it is now fueling my search and desire to dig into the Word and really soak up God’s words for me during this season. In Hebrews 11 it talks about all the people in the Bible like Abraham and Moses (among several others) who never got to see God’s promises fulfilled, but lived their life with the faith that they would. They lived for a heavenly life, and not their earthly life. I may never wake up to see the day when I am healed and free from this disease. But this life, and more importantly this body, are temporary. One day I will be with Christ in Heaven, with a perfect and glorious body that knows no limits. And with that perspective I can pick myself up out of this hole of frustration. Not to say I am there, by any means, and not to say I won’t struggle as things progressively get worse or when I hit bumps in the road…but I will be more equipped to handle them with the perspective that this pain won’t last forever. In Lamentations 3 it says that though there is grief in this life the Lord will bring compassion and unfailing love. “For He does not willingly bring affliction or grief to the children of men (verse 33).” God is going to use my life (hopefully) in some way that will glorify His name and love. There is most definitely a reason that I have been GIVEN the life I have…and I may not know the reason why until I see Him…but I rest assured in the fact that He knows, and really that’s enough. It’s more than enough.

Serious kudos if you made it this far. I don’t really know what response I’m expecting from this post, if I’m even expecting one. Just throwing out some struggles in the hopes that being real will not only allow my heart to heal, but perhaps others as well. 

2012

Well, another year has come and gone. Another year full of joy, pain, sadness, celebration, and just about everything else. And as I seem to be every year, I'm never where I thought I would be...and I wouldn't change it!

Originally I thought I would be sending this post from a bus on the way to Passion 2013. After 4 years I was finally given the opportunity to go, but it would seem God has something else for me. So I am anxious to see what He has for me here this week....because I'm really bummed I am not there.

So, as I do every year, here is my list of pretty memorable things from the year:

- Going to Colorado with my family, and skiing for the first time
- Having two internships in the Spring: an online internship with the Compassionate Nutritionist, and another with a local restaurant Olive Branch
- Being given the AMAZING opportunity to expand my KXA lineage with my lovely great grandlittles
- Looking like a 15 year old again and getting braces
-Mom having her gall bladder removed
- Lady Bears being NCAA Champs, having an undefeated season and being the first team in history to go 40-0; and the men's team getting to the Elite 8
- Getting my Baylor ring
- Getting the new love of my life - Brinkley
- Beginning my shadowing experiences at Hillcrest, and eventually getting a job there that I am completely in love with
- The massacre at The Dark Knight Rises
- The Olympics
- Celebrating my 23rd birthday
- Getting to spend Homecoming with one of my best friends
- The election
- Graduating from Baylor University
- Spending Christmas with my entire immediate family
- Baylor winning the Holiday Bowl (49-26!!!!)

There has been so much that has happened within the past year and there is no way I could express it all here. But it has been another year of growth, and being pushed to new places and growing into (hopefully) the young lady God is calling me to be. I wouldn't be anywhere without Him. And there were definitely times this year when I wondered what in the world He was going to do with me, but His plan never failed and everything fell into place.

I look forward to 2013 for so many reasons. Most importantly I will be beginning my master's degree program which I am so excited about, and I am getting the immense pleasure of continuing my amazing job. I am so anxious to see what God has in store for me this year. I never have any idea where He is going to take me, but the destination doesn't matter....all that matters is I know that He has my life in His hands, and He is going to lead me down the path that is best for me, all I need to do is trust and obey.

Here's hoping this post finds you well, and that you have a happy new year!