Ok, so I'm home and recovering from my adventure in Seattle. In the few days leading up to my test Wednesday morning, they pumped me full of steroids. Steroids and I do not mix well. I had to take them every six hours, exactly, around the clock. They also made sleeping VERY difficult and uncomfortable. So if I was asleep at all, however briefly, I had to wake up at 1:00 a.m. to take my pill, then good luck getting back to sleep. It was not fun.
So after a particularly awful night of sleep (minutes of sleep), we got up at 4:00 to head to Seattle. When I got to the infusion center and sent to my room, the nurse asked, "Do you want to keep your IV in?" I asked, "Why?" He looked at me like I was daft and said, "Because you'll be needing it for the next three days..." I said, "Uhm, no, I won't." He said, "Yes, you will. You'll get your infusions for the next three days." Meanwhile, he's fiddling with meds, packages, etc.
I started getting a bit agitated and said he'd better check the sheet because I've been told it was just a test that took an hour. "Oh, you're here for TESTING? I thought you were here for MS treatment." At this point, amped up, already exhausted, and nervous enough about my ACTUAL test, I clarified why I was there, and only half jokingly said, "I wanna leave now."
He apologized profusely, looked up the correct person and forms and showed me he'd be doing the right thing. I was not feeling all that confident and seriously wanted to bolt. But I didn't. He finally assured me he'd be doing the cortisol test and we were fine.
Then he had trouble getting my IV in. So I have lovely bruises on both arms, my battle scars. The injection did indeed make me feel a bit ill. Then he took about six gallons of blood each time for four times. Then, I left, and fled upstairs.
I met Mark and Anna at the elevators, heading up to my consultation with the ordering doctor. Turns out, I had to meet with the PA, whom I didn't "click" with. She wasn't like Dr. Evil, but in real life, she and I would not be pals. No Starbucks for us, uh-uh. No common ground, no connection of any sort. But I persevered.
I was a bit chapped I didn't get the doctor. By this point, I'd been up for over 7 hours (and it was mid-morning)--if by up you mean out of bed (awake for what felt like about 30 hours with my awful, disrupted sleep patterns), and I found her questions grating and repetitive. And I wasn't filled with hope.
She said even if I do have this illness, it's extremely rare and extremely hard to prove. It hides in tests, and sometimes takes months or years to pin down. She gave me packages of expensive and time consuming "test kits" to take home (four of them). She also said if I'm not on a bad cycle, the tests would be useless, and we'd have to wait until I have another bad cycle and take them all again. But I should take them anyway. Neat.
The thing is, I tried to get in starting months ago, when I was having a severe weight gain/other symptom cycle, but they blew me off and bumped me to now--right after I've come through the worst of it. So, it looks to me, I may have to continue on as I have for...how long? Don't know. And during an "off cycle," I still feel bad and don't lose weight. A limbo of the worst kind.
Then, she told me she'd go talk to the doctor, and they'd come back. I was feeling a bit agitated and wanted to get the heck out of there! We had hoped to go to Panera Bread before my follow up with Dr. Nice (totally different doc, but in the interest of travel convenience, set for the same day). After awhile, no doctor, so I wandered the halls until a nurse told me she (the doctor) was coming.
Now her, I liked. She seemed to hear me, unlike the PA, who seemed to be phoning it in. But, nothing new. We see what the test shows and go from there. I can only hope the test, if I indeed have this condition, showed it. The most discouraging thing all parties said is even if the test is negative, doesn't mean I don't have it. Super. Thanks.
I have a working plan, though. If the test is negative (for now), I'll likely do another hcg cycle ASAP, and hope another bad cycle doesn't attack immediately after. The previous three times I did it, the weight held. Losing most of what I gained back would make me feel better in the meantime, while we wait for the other shoe to drop. THEN, when it does, I get my hiney in there and do the tests while I'm gaining 2# a week and feeling like death would be a treat and we can get MOVING.
But, I digress. After four fun filled hours at Swedish Medical Center, we went and saw Dr. Nice. That was a bit of a letdown. He did say, when asked, my labs (though he didn't test specifically for it) did not rule out the cortisol disorder, but that wasn't what he was looking for. He said my labs are all screwed up (duh). One test shows my cells do not get oxygen. The oxygen skates along the top, but doesn't get in and do the work it needs to do.
This is very odd and hard to treat and unlikely to be treatable here, nor would my insurance cover it. So chalk it up to thing #396778 wrong with me that we can't fix. We can see it, but we can't get there from here. I nearly burst into tears. I just want something to be clear and actionable.
Things improved after this point. We went North and spent the rest of the day and overnight with our dear friends we've known since before the invention of rope. Even though Mark wasn't feeling his best due to an interminable sinus infection and I was jacked up on weird drugs and exhaustion, we had a wonderful time. Their youngest daughter is one of our daughter's favorite friends, and they had a great time together as well. This good medicine was a special treat after the fatigue, body torture, and disappointment of the Seattle trip!
The next morning, after a nice breakfast together, we headed back to the Tall and Uncut. The trip took forever as we had to go to my dad's and retrieve our retrievers. We were able to stay at my dad's for a little while, have lunch, and relax a bit. Poor Mark had to work after we got home. Ugh. Then he had to both sub, and is working at Safeway right now. He's a trooper, but it still sucks. We're desperate for him to get a full time teaching job this next year!
Again, I lost my syntax. Anyway, today I've not felt well. The prednisone is slowly abating, but I've felt bad from the biohazard they injected Wednesday morning. I'm always tired after a trip to Seattle, but I was feeling discouraged about the depth of it. School was brutal, and my body just has felt weird. Then I looked in the mirror and thought it'd break when I saw the dark bags under my eyes. Then I recalled they said it was normal to feel quite ill for days after, and that cheered me up. I'll rally.
Today was a struggle all day, but tonight things seem to be improving a bit. I am hoping for much improvement tomorrow! But mostly I'm hoping for a good answer on Tuesday and for Mark's sinus infection to go away. The thought of the best case being I do another hcg cycle followed by probably another back surgery in the summer (that would as like as not kick off another bad cycle) makes me want to hide under my bed and refuse to come out.
But even so. I love my family. I love my friends. I am a blessed person.
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