The phrase TGIF has a whole new meaning to me now. I have never been more excited for a Friday in my life. I can't wait for a weekend of REST. This has been a challenging week physically, mentally, and spiritually. I have been put through more than I ever thought I could stand. I know that God is never going to give me more than I can handle but...I feel like my cup's getting pretty full.
Since Wednesday, I've met my main doctor who in spite of her brilliance has no bedside manor to speak of but that's ok. (As my cousin said, "we want her for her brain not for her tact.") It was hard hearing things so bluntly off the bat and being vulnerable. From the moment I got here, she expressed her extreme frustration with my doctors in Dallas. She thinks they have done more harm than good. I believe her exact words were something along the lines of "they've made a big mess and now I have to clean it up before I can even figure out what's going on." She off the bat threw out my diagnosis which sent me into tears...here I was thinking that I've had a label just no solution...no she said...I don't trust anything they say. So all of the sudden I was back at square one again. Sick with no label, no solution and no light at the end of the tunnel. It was a bit discouraging.
I started tests that afternoon and since then it has been non stop. I've been poked and prodded until I thought I just couldn't take it anymore. I've tried to be strong for so long and now it just seems like I'm starting over. Which I guess I am. I am in good hands here though. These people are amazingly organized and when I show up for a test they already know everything about me. It is awesome. Not to mention God is working through all of these people here. The nursing staff remember your name and say hi and smile and try and comfort you they are so kind. They've made the process more bearable.
I've had what feels like all of my blood stolen :) Needles, needles and more needles! I've been turned purple through a sweat test that I wouldn't wish on anyone. They cover you in gold powder slip you in a tent under heating lamps (any of you that know me, know how well I do in the heat) then increase your body temperature until you're running a fever 100.4 degrees and see how you sweat. If you sweat your powder turns purple and you are instantly turned into Barney. I was in and out of consciousness the whole time and by the time they pulled me out after an HOUR!!! I was unresponsive...so next thing I know I'm shaking and some little Asian doctor is poking at my eyes and lifting and dropping my arms. I now know it was the head of Neurology and that I sure know how to fill a room with people quick. I seem to be making a habit of it here. Four showers later...I'm still pale purple.
I've had an EEG that was painful and left sores on my head. Wore my monitors and got no sleep last night because my blood pressure cuff was going off every 20 minutes. Over the last 24 hours I've watched my heart rate fluctuate from 49 to 141...I don't think that's normal. These are just some highlights from the week. For my grand finale though, I might as well go all out right? I had a cardiovascular stress test today that nearly killed me. I gave it my all like they asked and they got what they asked for. My heart rate spiked to 165 which is really high for me then my blood pressure bottomed out to 80/42. I filled the room that time too. Needless to say I'm so tired its not even funny.
Looks like we'll be staying here a few days longer for some more test and consults that the doctor wants me to have so it looks like one week is quickly turning into two. Please pray for wisdom for my doctors and strength for me. I have the weekend off from testing...but Monday morning I have some sort of Gastric Empty test that involves me going to the hospital and apparently radioactive eggs are on the menu for breakfast. How did they know that of all the things in the world eggs are one of the things that repulse me the most! I don't know how I'm gonna get those down...I don't think hot sauce is allowed.
Thank you all for you love and support! For now, I'm going to rest. God bless!
You are in GREAT hands, Amber. Never give up hope and know the strength of our Lord to provide the strength you will need. But rest is critical- so relax and rest and sleep and mellow your spirit. Our doctors in Dallas do what they can - but MAYO is known to provide alternative, collaborative solutions - so hang in there. We are all here for you, praying for your ordeal and your spirit, and wish you the best AND an answer.
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