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 feeling...off. 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.