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
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