Sunday, June 25, 2017


If you asked me to describe my life right now, I would say it's in pieces. Not necessarily a negative thing, just that there are so many different pieces spread out in front of me, so much unknown - and I can't finish it without getting some pieces put in the right place first. The problem? I'm not in charge of putting the pieces together!

Those close to me know that I am a HUGE fan of puzzles. I love the mental challenge of figuring out how to put tiny parts together to create a bigger picture. Have you ever noticed if you just look at a piece by itself, or even a couple, you have no idea what the bigger picture is? It doesn't make sense to just look at part of it. So why is it so hard to not do that in life? We get so bogged down by the current circumstance and most of the time it doesn't make sense, but we don't have access to the big picture yet. My current conquest is a 1500 piece collage of Van Gogh's most famous works, and it's satisfyingly difficult! But think about it, you've toiled for hours over this puzzle, possibly even days - and then's finished. Complete. It may be weird, but when I'm finished with a puzzle I find myself running my hand along the entirety of it, enjoying the feel of a complete puzzle, no missing pieces (most of the time). It's perfect. The benefit of actual puzzles if you get a picture of the completed image to go off of and to guide you through the process, though in life sometimes we are not so lucky.

There are a lot of unknowns in my life right now, and a lot of missing pieces. Over the next couple days so much of my life could change, and I have been stuck in an agonizing hole of waiting. I struggle a lot with anxiety, and with my dysautonomia when I get in these stressful situations (even if it's positive stress) I get stuck in the "fight or flight" mode for hours, or lately, days - which is beyond words exhausting. Your body isn't meant to be in that state for more than a few minutes, and after the stressor is gone your body resets itself. Mine however, seems to have lost it's reset button, which has made me pretty sick and run down the past couple weeks. Hopefully all my efforts will have paid off, and hopefully there will be a happy end with the final puzzle piece soon.

Not only with my (I'm sure frustratingly) vague situation, but with my health too there are always going to be missing pieces. I suffer from autoimmune diseases that I usually have to educate my own heathcare providers about. And apparently now my migraines are going to be daily for the time being. I used to have migraines maybe 3-4 times per year, and they were managed with medication and in the grand scheme of my health, were not a big deal. But after the cruise I developed Mal De Dembarkment Syndrome (MDDS), which apparently triggered my migraines to become daily. And there's a possibility of fibromyalgia?? Still unsure of that one. Needless to say, as if my life weren't complicated enough by chronic pain and autoimmune issues, I get to add another piece to it. Right now I'm not controlled by medication and am going through the agonizing trial and error process of different ones - the current has an 8 week titration schedule to even get to the lowest dose. Great.

And marriage! That is like adding a whole other puzzle to the mix! Jake and I have been through the ringer in our 4 short months of marriage, but it has made us all the more strong as a team. I don't have some prolific message to end this with, it's moreso just word vomit and trying to figure out some sort of pattern to the various pieces of my life right now that just don't seem to fit no matter how hard I try. But I try to focus on that accomplished feeling I have at the end - knowing my hard work and struggle has paid off. Hopefully soon I will be granted a few final pieces that will put together this part in my life, and I will get the satisfaction of a job well done. But for now? I wait.

Thursday, April 6, 2017


I have an update – and a diagnosis! Turns out all of this is transpiring as a result of vestibular migraines. I’ve struggled with “normal” migraines since high school, and have obvious vestibular issues as a result of my dysautonomia, and I guess after 27 years they’ve decided to get together and have a party. Also turns out that the ENT I saw a month and a half ago diagnosed this problem when I saw him, but neglected to tell me or explain that he doesn’t treat migraines and that I would need to go see a neurologist. And the neurologist, who has been in cahoots with said ENT, never told me that diagnosis either or offered a treatment plan. Needless to say this ENT is out of my doctor arsenal. The only reason I even found this out (after countless calls and messages to both physicians) was when I messaged him after my saint of a sister found vestibular migraines online, and his nurse called me back confused why I was so excited about finding out my diagnosis that had already been made.

So – there is at least a light at the end of the tunnel now. I’ve been started on a daily preventative medicine, which of course will take about a month to fully get in my system, and I’m working on getting an as needed med to get me through until then. Short and sweet update. I’m still feeling pretty awful 75% of the time but at least I know the cause, and there is a treatment! Something I’ve not always had the fortune of having. And now we wait…

Friday, March 31, 2017

Reaching the Limit.

Where to start? I feel like these days I don't know which end is up, lately all too literally. Everything in the last 2 months has been such a whirlwind, simultaneously feeling like it went by at 2 and 120 mph. The biggest and most exciting thing is that this is my first post as a married lady!! The wedding was everything I dreamed of and more. Married life is incredible! It's like a slumber party with your best friend, but every night! It's such a comfort to have him around all the time and getting to start this new chapter together.

Unfortunately, it hasn't all been sunshine and roses. Literally the second we docked back in Galveston I started You know in Inception when Ariadne is learning how to manipulate structures in dreams? That's literally what my vision looked like. This happened on and off for the next couple days. I've had bouts with vertigo (presumably another lovely addition to my dysautonomia symptom symposium), but never like this. I went back to work for one day, and the next day I couldn't even sit up. Everything was spinning all the time, and I felt like my entire world was tilting to one side. I literally would tilt sitting up because that made me feel like I was sitting straight up. One ER visit later they said it's likely just super intense post-cruise vertigo and it would pass. But a few days later I was completely useless. I couldn't work, and was now experiencing massive changes in my hearing. I was hospitalized and had an MRI to rule out the scary stuff - like cancer or some sort of weird mass pressing on my cranial nerves. And while the negative MRI is amazing news and was a huge relief to hear, it still meant being back exactly where I've been for 95% of my life...miserable and without answers. Hearing tests revealed something wrong with the cranial nerve that affects balance and hearing, but no answers as to why. Vestibular testing is next on the agenda, but it's been 3 weeks now and still no date set. Despite numerous frantic calls to my doctors and their nurses, no one really seems to be taking this seriously or realizing what an effect it's having on my daily life.

The vertigo, thankfully, has mostly subsided and just comes periodically now. Though when it hits I can't even stand up for fear of falling. But now the biggest issue is my hearing. I go through periods of extreme hypersensitivity and tinnitus (ringing in the ears) that is so loud I can't hear anything else, which is a new and overwhelming experience. To put it in perspective a little, a car engine sounds like an airplane. The rustling of bed sheets sounds like 10,000 plastic bags being crinkled at once. People speaking in a normal voice sounds like they are screaming directly into my ear. And don't even get me started on Brinkley barking. And most of the time during these "episodes" or whatever lovely name they can be called, I get disoriented. I feel disconnected from my body, like there's a big gap between my brain and the rest of me. At it's worst I haven't been able to speak or understand people speaking to me, at best it's like one of my bad aphasia days where I forget normal words and feel REALLY stupid, all the time. Especially having a clinical job where sometimes literally patient lives are in my hands, it doesn't help when you're not at full mental capacity. And it's quite humbling, and humiliating, to have to call to another hospital and ask another dietitian to read your note to see if A) it makes sense because words are hard to put together and B) that you've done the math right to properly feed this patient. My entire life my mental status was the only thing that's always been fine, and now suddenly that's compromised. As far as the hearing goes, I've been wearing ear plugs for most of the time just to make things seem normal, but apparently that's not good and makes the sensitivity even worse. But there are some days like yesterday that I just HAVE to get as much silence as I can muster, so I'm taking one for the long run team by using them. It's almost like I have to make myself completely deaf, shutting out the world, just to keep my sanity. Watching tv has become silent movies with subtitles, and my darling, sweet husband is doing everything he can to keep things quiet around the house and putting up with having to read while watching TV. Last night he signed in ASL to me that I was beautiful, and I started to cry (though I don't think he knew why). I began to think "Is this my life now? Never being able to hear the soothing, melodic tone of my husband's voice? Never getting to talk to my family on the phone without video? Having to communicate solely through sign language?" And while I know that realistically that isn't likely to happen, the temporariness of it last night felt all too permanent. Thankfully at this point I'm getting some periods of solace, though they seem to come and go all too quickly.

I wish I could be writing this saying that I've had the next round of tests, they've found a diagnosis and there's a super easy cure. As hard as it's been physically to be dealing with this, the hardest part has by far been the mental battle. No one can truly understand the devastation of being the cycle anew unless you've had the unfortunate lot in life to experience it firsthand. For 24 years I lived without answers. Going day by day with a miserable list of symptoms no one could explain, but just had educated guesses on. And then it happened! The day I remember still so vividly to this day - the day I FINALLY was given answers. A reason WHY all the random things were happening and finally all the pieces of the puzzle were being put together. I got to meet an incredible group of people who really understood the walk I had been walking. I NEVER thought in my life I'd meet someone who truly and completely understood what it was like, and suddenly for a month I was surrounded and encouraged by them and together we learned how to take back power over our various illnesses. And honestly? I thought I was done. Done having mysterious symptoms without any conceivable cause, done going to specialist after specialist trying to find someone who would take my illness seriously. I had FINALLY gotten a routine down and made peace with where I was physically, mentally, and emotionally. I have a great job that is going to get me started down a path to my dream job, I'm completely living on my own and supporting myself, which is something that growing up was never going to be an option for me. For heaven's sakes I just got MARRIED! Another thing I had honestly given up on. We had just gone to visit 3 different countries in the span of a week and both had gone on a cruise for the first time and had the greatest honeymoon of all time. If anything this was my time. My time to just be irrevocably and completely happy. But now I'm back to the most dark part of my life? Back in the driver's seat with no steering wheel or GPS, and no police around to help guide me to safety. No one even on the road in sight, noticing I'm about to crash and burn (or at least feeling like I will). It is one of the MOST frustrating things in life to have something wrong with you physically and when you go to a doctor, or several doctors, and they don't seem to take it seriously or think you're just being an overdramatic woman, or worse - a pill seeker. Or they decide on a plan of care, some testing that will hopefully shed some light on what is rocking your world, but don't seem to have any conviction about getting it scheduled.

If you're still with me - congrats. I wish I could end this post with some spiritually convicting question or some wisdom that makes you feel all warm and fuzzy inside like some of my posts do, but this one is not one of those. This is completely an "I'm at the end of my rope with chronic illness and don't know what else to do but rant and yell at my computer screen to get a minuscule amount of emotional catharsis" post, which to be honest is the type of post I started this blog for. I'll admit this weekend in particular, I was in a DARK emotional/mental place. As I write this I am thankfully at least in a better mental place than I was, though it's still not the bubbly, happy person that I aim to be. I'm stuck in a pit of miserable waiting for these tests that may not even have answers for what's going on. I just got married a month ago. This should be the happiest time in my life, and I'm back in the worst cycle there is. Not to say that there aren't happy times still being had. I mean, I just got married!! Married life, as I mentioned, is the greatest thing in the world. And there's no way I could be as positive as I am without my loving husband encouraging me and being my rock right now. It's such an example of God's love for us to be living out marriage on a daily basis. There's NOTHING like that love. You can't describe it, and you don't know it until you feel it for the first time. And it just makes you think "if I can love my spouse THIS much, and experience this kind of love on Earth, how can anyone truly explain or understand the breadth God's love for us"? So there it is. The bright spot in the darkness (a not so subtle plug to my last post). If you're still reading - I'd covet your prayers. It's really scary being in a place with no answers, and no obvious signs of a hard road ending, and I'm tired. Not even tired - I am fatigued. Exhausted. Worn down. Burned out. I don't have much fight left, and I consider myself a relentless fighter. I need answers, and I need them soon. So please be in prayer that the testing comes through - and quickly. And that I can hold on to God's strength and use His power to get me through, because I don't have anything left.

Tuesday, November 15, 2016

Light in the Darkness.

I was looking and this is only my 5th post of the year, and it's halfway through November! Going back and re-reading my posts and seeing where I was when I started this journey compared to now is pretty amazing. Even though I may be posting less, I feel like this blog is still serving it's purpose of being an outlet of awareness and catharsis for me.

Yesterday was a BAD day - today, not much better. I've written about my bad days plenty of times before. This one was no different - started out with no conceivable cause, leaving me barely able to stand or walk for but a few minutes. Yet emotionally and mentally I don't feel the same as I did yesterday, and how I feel for so many of my long, bad flares...something was different this time. This time, while I was on the floor crying all my tears out as I usually do when I hit this point, indescribably frustrated that I couldn't stand long enough to take a decent shower, there was someone there to pick me up - my fiance. I looked up from my despair and was not physically alone anymore.

Yes, I've had a fiance for a little while now, and in 100 crazy days I will marry my best friend and we will forever be each others - but up until last night I had never truly let him see how low I get in these moments. I was far past my pride and the will to pretend I was anything but devastated, angry and just done. It's so easy to see the difficulties of having a chronic illness and all the toil it brings....but it also brings positives, which I don't take into account often enough. I have NEVER experienced a love like this before, and for once it's not a love in spite of my illness...but because of it. I'm 27, and until I met Jake I never thought I'd get married. I didn't think that anyone would voluntarily chose to take on my additional physical issues and everything that comes with it; especially from past relationships of being told I was a burden and life with me would be too much of a chore. But unknowingly, I walked into a new church in a new town and met the man God always had for me. One who doesn't see my illness as a part of who I am, but rather just something that is there. One who never does anything but encourage and empower me, even in my darkest of moments.

I may have woken up this morning unable to physically function like I usually can, yet my spirits are unusually uplifted and I know it is because of the seemingly impossible to find, unconditional love that I have been blessed with. And when I step back and look at him and our love - I see a shining example of God's love for us. God gave him to me, and me to him, and when I see his face smiling at me for a dumb joke I made or just watch him do life - I'm constantly reminded that this love that is all consuming and incredible, it's just a grain of sand in comparison to the love God has for all of us. And that "happiness can be found, even in the darkest of times if only one remembers to turn on the light."  (Also - 50 points to whoever knows where that quote is from)

Where do you see physical examples of God's love for you? So often we pray to get out of the harder situations in life, instead of learning while we're in the valley. One of my favorite quotes is "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." The Bible basically promises that we will have hardships in life. Look at our country right now! This election process has unveiled a divided and broken country where it is seemingly impossible to find good news or positive situations. It would be so easy if we never struggled...but without struggle, how can there be growth or change? And often times that is when God uses us the most, or can show us what He wants us to see because in those moments where you just can't find the will to fight anymore or can't see the positive in any situation, we are most vulnerable and willing to try anything. Over the years I have had more encounters than I can count of random people wanting to try and heal me, or make me question my faith because I didn't get the physical healing they and I have prayed so hard for. I don't know how to describe it, and I'm definitely not saying that I'm totally copacetic with being sick - but it's shaped me into the person I am, and continues to shape me. I've said it before, and I'll say it again (mostly because I still need to hear it!) - I may never physically be healed on Earth or know why I have been given the life I have...but God has a plan, and none of this was a shock to Him. It would be super easy to let the negativity and basic suck of this situation rule my life - and for a while it did - but what kind of life is that? Just because I have a harder time physically than others doesn't mean my life is any less important or God doesn't have a plan for my life. It's hard! Even right now my words are half just to convince myself, but not all is lost and dark. I have the ability to have a job in the field I have such a passion and skill for, I have an incredible best friend who is soon going to be my husband, and I have a wonderful support system of family and friends.

There's always light in the darkness, sometimes it just takes a little more work to find it but it's you see it?

Tuesday, June 28, 2016


It is with a very excited and hopeful heart that I write this post!! As many of you know I daily struggle with intense chronic pain all over. Never easing up, never ceasing. During my flares it gets so intense and terrible that I sometimes can’t even get out of the house. I’ve tried every nerve pain medicine on the market to no avail, and usually ending up with side effects worse than the original problem! But every once in a while on top of this chronic pain I have a left thigh issue that pops up ever couple years and literally feels like I am walking and moving around with a broken femur. The past 2 weeks have been completely excruciating and debilitating, leaving me wheelchair bound even at home.

As with my chronic pain, this breakthrough pain has left doctors without a cause or any treatment that even lessens the pain. Honestly the past couple days have been really tough – physically of course, but emotionally and mentally as well. It’s definitely starting to wear on me and I just feel completely useless and defeated. Yesterday was a series of roller coaster hopes of getting in to see various pain specialists in town but to only have them not work out for one reason or another, or not be able to be seen for months.

I would love to say the next part of the story was a crazy coincidence, but I absolutely know it was God working through the people around me. My mom texted me (aware of my pain level) and said she saw a commercial for this product called Quell. So I did my research thing and looked it up and it’s the only FDA approved device that is supposed to strap around your calf, and through a series of gentle electro stimulation, lessen your chronic pain! Sound too good to be true? I thought so. Also, if it was seen on tv how legit could it really be?? But at this point I’m completely desparate and grasping for straws, and I managed to find a retailer that sold it in a city about  45 minutes away – so I went to get it! This is what it looks like!

The directions that come with it state that some people find relief in 15 minutes and some must wait 2-3 weeks depending on their level of chronic pain and how long they’ve had it (I’ve only had it some 17 years, so naturally I’m banking on this 15 minute business ;) ). I can say after about 30 minutes I start to feel it. It’s a weird sensation, it’s like  the area covered by the band feels tingly and numb like when your foot falls asleep, and as time goes on that sensation is traveling to other nerves, making them feel asleep. Which, when you’re in constant pain, is quite blissful. I won't get too into the science of it. But basically it has electrodes around my leg that stimulate the sensory nerves every other hour for an hour. These sensory nerves are what carry pain messages to the brain, so with some of them "blocked" it allows my body to get endorphins and other natural pain relief signals to my brain when normally it's overloaded with the pain signals and the other messages don't go through.

Having chronic pain makes it hard to have hope. When you constantly search for answers and get excited about a new medicine, treatment, or doctor only to find out that they don’t know how to proceed or the treatment doesn’t work. And after yesterday with my hopes dashed over and over I didn’t want to go into this having an expectations. But I can say – with GREAT pleasure – that it’s now about 17 hours in and I’m already feeling relief in my leg!! It’s minimal, but right now I will take anything I can get! And if it’s already having this much effect, I’m anxiously hoping that in the next couple days it will completely alleviate my thigh issue. And who knows, in a couple weeks what if it took away my chronic pain as well? Or at least lessened it??

I can’t explain the excitement and simultaneous relief it is to find something that is working even a little, and has quite the potential to do a lot!! This is a drug free method that can make my live more bearable! I don't want to get too ahead of myself and call this a success yet, but I think the potential is pretty exciting. And if that means I constantly have to run around looking like I’ve escaped house arrest – that’s a small price to pay ;)



Wednesday, May 25, 2016


Resting is always an area I've struggled with. My entire life I have thrived on being busy and going non-stop, as do most modern Americans; because we've been almost trained in a way to view being busy as a sign of success. Even amongst friends or co-workers, all the time I hear competitions of who is busier or who has less free time. This mindset has done so much harm to our psyche, and has truly twisted rest into being lazy, when really rest was created FOR us, and a God-given example of rest started at the very beginning with creation.

We were created for rest. God mirrored that example Himself. After all of creation, He rested for an entire day. Did he need to? Probably not, but He understood it's importance. We are human and fallible - needing rest. It's not a sin. It's not something to feel guilty about. And our pride for wanting to be the busiest person shouldn't get in the way of that. Don't mistake rest as being something you're too good for or don't need. Or, if you're like me, don't view it as you are somehow being weak because you need a minute to just get away from everyone and everything. Being chronically ill for my entire life has made me always feel in the back of my mind like I need to prove myself or keep up with healthy people and do just as much as they do, if not more. Recognizing my limitations has always been one of the hardest things for me to do, and certainly is not something I have successfully accomplished- it's always going to be an ongoing fight. But I, moreso than my healthy counterparts, need to rest physically. But our culture has so twisted this God given gift into a sin.I would imagine people have different reasons for not wanting to rest - trying to "keep up with the Jones'", trying to distract themselves from thinking or stewing about a situation/relationship, wanting to prove something, etc. The list could go on for miles! Before feeling like I needed to write this post, I had a real-life moment with myself and with God. Why can't I just rest and relax? I think a huge part of it is so many of us feel guilty for resting.

Most of this post has been about physical rest, but it applies to mental/emotional rest as well. I find myself so many evenings unable to sleep because my mind is RACING. It's truly exhausting! And are any of those thoughts worth losing sleep over? No. Most of them are "what if" questions or walking through every possible scenario for a situation, 99% of which will never actually happen. Until the recently, I've been working or on-call 24/7. To say that I've been getting burned out would be quite the understatement. The past week or two I have noticed quite a few opportunities for me to not have work things on certain days, or getting an unexpected day off. Our natural instinct upon getting these opportunities is an entire day or a couple extra hours to do more work! Running errands, cleaning the house, running around town...none of these are bad things and are in fact necessary! However, when they begin to replace rest, trouble arises. BUT! Instead of doing that, I chose to accept this gift of time, and intentionally rest. And it was SUCH a relief! Forcing myself to get away from my phone, get away from work, and just have a nice relaxing day did wonders for my mental status and physically was great too. And I felt convicted about how I feel about rest in general and how I've been praying about it. Most of you have heard before that when you pray for patience, chances are you're going to be given situations in which you should be patient, rather than being gifted patience itself, and I believe the same is true for rest. So often I pray for strength to get through each day, sometimes each hour (which has it's place in life, for sure); but instead, what if I am being given these little intervals of rest and I'm just missing them? We are called as Christians to lay our burdens down at Christ's feet. We have been given this insane opportunity to not have to carry our own burdens, and how often do we take advantage of it? I know I don't nearly enough, not even close.

Whatever your reason for not resting, whether it be physical/emotional/mental - find out what it is. Once you get down to the reason, you can figure out the best plan to begin resting. Rest for every person may look different, but we all need it. There's no harm in it, and it is in fact encouraged! So often we think of following Christ as going out to all the nations and witnessing (which it is), but we often overlook taking care of the temples God has gifted us for bodies, and we are called to protect and care for ourselves as well. So do yourself a favor today, even if it's 5 minutes, disconnect from work, family, situations going on and just REST. Who knows, maybe God will even use this time to show you something.    

Tuesday, February 9, 2016


Lately I have found myself trying to be very intentional in my prayer life about being grateful. And now that I'm typing it out, it sounds crazy! Why in the world would you have to TRY to be thankful for good things?? So often we run to God when our world is crashing down around us, if we need a prayer answered, or if there is a relationship in peril. But think about it - do you willingly run to Him the same way when things are going pretty well?

I once saw something on social media that asked the question "What if you woke up tomorrow with only the things you thanked God for today?" This has always convicted me, because as much as I hate to say it, there are so many times that I don't thank God for all He has blessed me with. Right now I am in an incredible season of life, and I don't think I've ever been this happy. Not at all to say everything in my life is perfect, or there aren't areas that I am trying to improve, but I'm choosing to focus on the immense blessings instead of life's imperfections. And really, why don't we always do that? Sure there's always going to be something to complain about or something that goes wrong; but how much happier would you be if you intentionally chose to focus more of the positive? In the past couple months God has come through in some HUGE ways and answered big prayers for me, some that I've been praying over for years and at some points never knew if an answer would come. Ephesians 5:20 calls us to not only be thankful for everything but to always give thanks - in good times and bad!

Someone indescribably dear to me is going through a situation that I went through, not even 7 months ago. It brings to the forefront how far I've come in that small span of time - and how I should offer nothing but gratitude and praise to God, because He's the only reason any of this is happening. My boyfriend is starting his first full time career-based job, having to move to a new city, and start a new foundation somewhere else. I remember how completely encumbered by anxiety and fear I was when that was me, and it may not have been until recently that I discovered why God brought me here, but there was a reason - and soon he will find his reason for this new life change. I think about all the time I spent cowered in fear and thinking about all the "What if's" that were nothing more than a waste of time. I think of all the opportunities I may have missed to witness to someone or be a part of something, because I was too blinded by my own insecurities to just let go and let God lead me. Philippians 4:6 is one of those verses that keeps coming around to me and it simply says "Do not be anxious about ANYTHING, but in EVERYTHING by prayer and petition with thanksgiving, let your request be made known to God. " If I had just given that up the moment I knew it was happening and just trusted that His plan will ALWAYS blow mine out of the water and be better than I possibly could have imagined, I bet some other life changing moments could have happened.

These days I find myself daydreaming about all the great things going on right now, and I want to savor every moment. We've all had those moments when there is seemingly no good to be found in any direction, and those moments make these grateful ones so much sweeter. You praise and seek God in those dark moments, so how much more should we thank Him for providing the ones where we feel on top of the world? Don't miss moments being wrapped up in unnecessary worry...God already knows what is going to happen. And trust me - it's going to be so far beyond your imagination and expectations that you'll wonder why you ever tried to do it on your own in the first place.

"Give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thes 5:18