I'm not the Ashley Graeber of Sunnydale.

I'm not. 

Lately, I've been comparing myself to that girl, and have been buying into the lie that because I was her I still am her. 

But, I'm not. 

In light of more tests coming back normal, and my OCD running completely wild within my mind and manifesting in more circular journaling and begs for reassurance, I have begun to assume I am no different than how I was in elementary school. 

For those of you who don't know me all that long, let me give you a quick window into why this is such a struggle for me...

When I was in elementary school, I was the teacher's pet (still kind of am, let's just face it), the over-achiever (yup, still me), the perfectionist (guilty), and the hypochondriac (enter my current battle). I literally went to the nurse's office so frequently, I was well known by the office staff, and when I entered 4th grade was told by my teacher that she had "heard of me" and when I had her again the following year she said that I would "owe her big bucks" for all of the times she let me go to the nurse's office. I was constantly feigning injury, sickness, dizziness, and blindness (no, seriously. I don't even want to know the small fortune I wracked up for my parents as they took me to eye doctor after eye doctor all the while I was faking being blind because I was jealous of a friend who had a wheelchair and crutches for a busted up knee. Once again, Mom and Dad, I am so sorry...). 

I still have no idea why I wanted all of that attention, why I wanted to be sick and get out of school so badly, but I did. No one ever believed me, and by the end of elementary school I was pretty much the laughing stock of my class - I was that girl. The drama queen, the one who always had to have something massive wrong and moan and ache. That was Ashley Graeber.

Back to today. My doctor talked to me and said that most of the tests I had done yesterday for several new things came back normal. As I hung up the phone, I immediately wanted to just sit and cry. Although I was partially excited that nothing massive was being detected, I felt more and more like I had to be making this up, it must all be in my head. 

So here I am right now. Desperately clinging to the truth that I am not Ashley Graeber who went to the Sunnydale Elementary School nurse's office several times a week. Praying again and again that God would give me the strength, both mentally and physically, to continue this road that he has me on for his glory and my ultimate good. Fighting against the desire to say eff this, and push myself past every single ounce of energy I have left, ignoring all pain and light headedness and go until I pass out and then have something to actually complain about. 

I want to say that I am so at peace with all of this, but I'm struggling right now. I want to say that I've been saturated in the Word, and that I have been sitting at the feet of my Savior, but I have been avoiding talking to the Lord, and have no idea why. I so badly want to end this post saying that I feel so much better, and that the more I push myself, the more I realize I can do so much more than I have been doing, but that's a lie. 

I am tired. I ache, literally, all over. I feel alone and like a freak and totally numb to the truth I want to cling to right now more than ever. 

But. Even as I write this, the words to one of my favorite hymns is coming to mind. Just because I'm singing it in my head doesn't mean that I am going to put on a happy face and fake it until I make it because with God all things are possible. Not even close. But it does mean that even in this valley and long and heavy season of my life, I totally believe that God is sovereign. That he loves me. That he died for me. And that whatever this season is, it is preparing me for an eternal weight of glory that is beyond any affliction and suffering I am presently walking through. Even if that suffering includes fear that I am faking this all and then having to stop typing because my fingers and wrists and forearms hurt so bad I can't continue... 

Because I'm not Ashley Graeber. I am Ashley Titus, daughter of God, totally made new and redeemed. 

Until next post,
Sola Dei Gloria

More Waiting.

Usually, I like to wait for a day or two after getting an idea for a post before I actually sit down and type it up and write about it. Today though, I am just too tired to think through it that much. The frustration that was surging through my veins this morning has quelled to apathy and my body feels as if I ran a marathon. 

As most of you know, this morning I had my first appointment with the neurology department at UW Medicine. I was walking into the appointment with a "POTS, likely" diagnosis from the on-call neurologist in the previous weeks, and a completed Tilt Table test and hoping that a formal diagnosis would be made. 

Unfortunately, I am more confused now than I was at 9am this morning. 

The good and bad is that my testing last Friday showed near-normal results. I had a drop in blood pressure after several minutes of the standing part of the test, but nothing massive and nothing to suggest my autonomic system is out of whack. They did see that it is working much harder than it should be for a healthy 27 year old though. But, other than that, there wasn't anything conclusive.

So, the "POTS, likely" route was actually a dead end. The neurologist said that he isn't totally ruling it out, but at the moment, he doesn't see evidence that it is something like that - especially with the variety of symptoms I am experiencing. 

What does this mean? I'm not really sure to be honest. It means that I underwent another type of testing (an EMG test, which good grief was about the lest fun test I've ever done...) before I left their office and an hour later was told that another issue (myasthenia gravis) was now officially off of the table. Testing results in hand, and a very shaky body wheeled to the car, I am now home waiting for an appointment next week with my primary care physician to discuss next steps. 

At first I felt terrible - I weaned Owen without needing to. But, honestly, he is doing totally fine, and 16 months of nursing is more than okay. It's less of a hassle now that I am able to care for him even less than before, and he doesn't even show a hint of wanting to nurse anymore which is awesome.

Throughout all of this, I have struggled intensely with the fear that I am over reacting to whatever this is. That I am faking it. That I am being a drama queen. I was so desperately hoping and praying that I would have a clear diagnosis today that would silence these fears and lies, and that prayer was not answered. Interestingly enough though, I do believe it is God's grace that I do not have a diagnosis right now. As frustrating and long as this process has been, and all signs point to will be in the future, having a definitive diagnosis would have let me rest in that, rather than in God's love and mercy and sovereignty. Yes, I want an answer to all of this pain and exhaustion and debilitating illness. But I want to fully trust the Lord, and be drawn close to him much more than that. 

So... now I wait. I make the hard decision to do less and trust that the people who the Lord has provided to care for Owen and our house are in my life for a reason, and that I am where I am supposed to be, even when it isn't where I want to be. I will update more, hopefully in the coming days, as I am less exhausted and more able to think and write through all of this.

Continued prayers and texts and wishes would be amazing. So would meals, if you so feel inclined. A gal from church is setting up a meal registry and I will post that when it's finalized. We are now in the process of looking for a car (we don't have one right now), and that will add more to the already climbing expenses list. We have been absolutely taken aback by the sheer amount of support both personally and financially we have received already, and if you do wish to help us in that way, our GoFundMe site is linked to this blog. 

Love you all!

Until next post,
Sola Dei Gloria 

What's Been Going On...

For starters, please forgive the incompleteness of this blog, but I wanted to make sure that I at least put down into a post some semblance of an update. It's been awhile since I've posted, and am not quite sure if I am ready to get back into a 'rhythm' of posting quite yet, but I do intend to update a bit more than I have been.

Four weeks ago, today actually, I was grabbing Andrew's lunch from the counter and suddenly was overcome with dizziness. I've had bouts of vertigo before, and assumed it was that and called my mom to have her come over and watch Owen since I knew I wouldn't be able to. By the time she got here though, a million other reasons were swirling in my head as to why I could be dizzy, one of which was a hopeful excitement - maybe baby Titus #2 was on the way! I called for a doctor's appointment and was seen later that morning.

I had a pregnancy test done at the doctors and lo and behold... it was negative. It was a long shot, but I was a bit sad - I really wanted this to be something good! Looking back, it was simply God's grace that it was not what I had been hoping for, or at least that it wasn't baby Titus #2 along with the real cause of the dizziness.

In brief overview of the following four weeks, my dizziness continued to become more and more debilitating. My mom and mother-in-law, as well as a couple of friends from church took shifts of watching Owen from the time Andrew left for work until he came home. I was slowly becoming even more exhausted, and even doing simple things like the laundry would wipe me out for the rest of the day. "Just pushing myself a little further" was not an option.

Throughout all of this I have felt certain that I was faking this and being a drama queen. Growing up, I was a complete hypochondriac and faked so many illnesses. No one would believe me, and they had good reason - I lied a lot. That being said, although I knew I was not the same girl as I was in elementary school, the fear of not being taken seriously or over dramatizing the situation plagued me.

What also plagued me was the feeling of being a terrible mama to my sweet baby. I sat on the couch 90% of the day and didn't play with Owen at all. Reading a board book to him winded me, and doing an airplane ride on my legs was nearly impossible. I've always struggled with believing I was a "good enough" mama and as the days progressed the condemnation and guilt piled higher and higher.

Fast forward to Tuesday. After weeks of doctors appointments, Ear Nose and Throat specialist appointments, hearing tests, CT scans and an insane amount of blood work, we don't have any idea what's going on. In God's amazing providence, I met with a gal who I met this year through a Bible study and she asked me about my symptoms. After I listed off a seemingly random assortment of what I had been experiencing she looked at me and said: "Oh girl, I think you have what I have: POTS."

I looked up the symptoms and realized she may actually be right.

Wednesday afternoon, after the two worst days of dizziness and racing heart and exhaustion yet, I called my doctor and she asked me to go to the ER. I hesitated. We just paid off my medical bills from last years trial of Post-Pardum Depression and there is no way we have it in the budget to pay more bills. Andrew gently assured me though, that God had been faithful to provide and would remain faithful. Eventually I agreed to go, and seven hours later the on-call neurologist was sitting at the end of my hospital bed.

"Well, I can't tell you with 100% assurance because we have one more test to confirm it, but my first, second, and third on the list of probabilities is that you have what's called Postural Orthostatic Tachycardia Syndrome. POTS for short."

So there it was.

I hadn't been faking. I wasn't being a drama queen. There was a reason.

I was ill.

Honestly I am not sure how much more I can type out right now, both because I am already completely exhausted from reading Owen two books this morning and singing him a song and typing this, but also emotionally drained and on edge.

There is not a cure for POTS. There are types of POTS that improve and go away over the course of several years. As it stands, the type I have seems to be the kind that doesn't. What does that mean? Aside from the hand of God moving either miraculously or through medical breakthroughs, I will be walking through the rest of my life with POTS. Until I see Jesus face to face in all of his glory, I will never be the same as I was a month and a half ago.

There are medications that will help me continue to function as close to normal as possible though. One problem - I cannot nurse Owen while on them.

So, with heavy pain and an ache I can't even begin to express, yesterday started cold-turkey weaning my sweet, sweet son. Praise Jesus that we had already started weaning gradually over the past couple of months, so instead of 5-8 times a day of nursing he was already down to 2-3 times. But these past 4 weeks have taken a toll on him. God's grace is that he loves playing with tons of people, but nursing was the one semblance of normal for him and I. It was our time to snuggle and to be close when everything else was topsy turvy.

Suffice it to say, I've been a wreck.

Through all of this though, I have no question in my mind that God was and is not shocked at the fact that I most likely have a chronic illness in which my Autonomic Nervous System misfires and functions abnormally.

My sobs of heartache for the confused child at my breast do not fall on deaf ears, but on ears that wept for Jerusalem.

My very slow process of beginning to mourn the idea of what I "should be" as a mama and wife, the idea of having another baby soon, and even going through my day without having someone else care for my child, make my meals, and clean my house is happening as my faithful Savior holds me close and wipes my tears and reminds me I am only defined by the Cross.

I would love prayers. Not only for myself but for my incredible husband who has been through hell and back with me and still loves me as tenderly as he did the day we were married. Also for Owen, that he would know without a shadow of a doubt my love for him, and that my ability to be able to run after him does not indicate my level of desire to be his mama. Also that the doctors would be able to move forward with treatment after my final test is complete.

I know that God is using this to draw me closer to him and I am so grateful for that assurance. I'm not okay with everything though, and I'm not sure I have to be quite yet. I'm not mad at God for allowing this to happen, but am grieved that it is happening. I am hopeful that things will get better, but I ache more for heaven than I ever have before.

I will try to update after I do the final test, but until then,

Sola Dei Gloria