Week at OHSU.. no CSS 9/8/06

I did NOT have the CSS like I thought I was going to, nor have I met Dr. D. There is a possibility that I will meet him tomorrow, but I'm not actually holding my breath. I don't know why I didn't have it after Dr. L said last Tuesday, and now I feel somewhat foolish for saying that I was going to have one.

I've had a great visit with a couple of Cushies who were in town! One of the husbands is a hoot and a half, and my husband and I had a good time geeking out with him at Lunch. But poor cushie-wife was in a Low while I was Sky High...

I got really good at drawing my blood for the 32 hour draws, and my dear husband was ever so thankful he only had to play messenger service, not actually do the blood draws.

One thing I figured out is to make up all the packets for the tests as soon as I got my orders and supplies. It was VERY annoying trying to dig out everything for the 4 am draw, especially since I'd made the kits ahead for earlier draws.

Hopefully I won't be doing another 32 hour test, but if I do, I'm prepared.

The other thing I learned was to bring an insulated no-drip coffee cup. Being from Seattle I only have about 8 or 10 of these things about the house, and it was so much easier for my hubby to just take the cup filled with ice to the ER than to try to worry about an ice bucket and random ice going around those really sharp corners up the hill to OHSU. I think next time I will bring small baggies to put the tubes in when they go inside the insulated coffee cup.

Tuesday I had lunch with a cured Cushie and her cousin, and I could feel myself spinning up faster and faster. I know that I must have appeared to be a speed freak, or a coke-head as fast as I was talking, and as tangential as I was. They are absolute dolls, and it was helpful for me to know that they had a darn good idea of what was happening.

So, I go up early for my 2:30 appointment at the clinic and I'm suddenly spun WAY out of control. Patty at the front desk wanted me to fill out the "why are you here" paper work, and I couldn't figure out what the heck I was there for. I couldn't think, I couldn't concentrate, and I think I wrote down something like "I'm here for Cushing’s but my brain won't work anymore, help" So I get back to the room, and my blood pressure is the highest it has ever been in my entire life, I'm crying, and I can't stop moving! I couldn't stop pacing, shaking my hands and head at the same time. I was a freaking out, and not having a good time at all. Chris had me do an immediate draw, but I had to have her help because I was so frenetic. I explained that I've been like this before. Or at least I tried to explain that.

Frenetic is the only word for how I felt for close to three terrible hours.

Chris had me draw my blood at 3, 4 and 5 o'clock. I'd done one at Noon, and then the regularly scheduled one at 8. I can only hope and pray that they caught something. Chris wanted to know if I've ever done that before, and yes, all the gods and goddesses help me, I've been that way before. I finally started to calm down a few minutes to 5, but I was still mighty spun High.

So, Wednesday, I started the Dex. Before I started, my back hurt so bad, I was pretty sure the crash was on its way. My husband and I decided that we would kill some time by taking a drive up to Mount Hood, but by the time we got to the Village of Government Camp, an hour or so after I took the first dose of Dex, I crashed as hard as I was afraid I was going to. For about 4 hours I was completely out of it, with a few dips back to lucidity. Or what I thought was lucidity. My brain would work, but it was too much effort to say more than a few words. I don't think I've ever sat still that long before, not moving a muscle.

He called Dr. L, but my symptoms were bad enough to need to go to the ER, but that I needed to be watched. Since I'm staying with my friend here, whose mom just happens to be a nurse, Mike makes the call to go to their house early. He had to half carry me to the Mom's bed, where I slept for several more hours.

Then Bing! I wake up! I'm alert and my entire body functions just like it is supposed to.

But, being on the Dex, I don't have the BRUTAL headaches that normally accompany such a crash. That was significant, all by its lonesome. Dr. L told my husband that the dex would make things better. Or make me feel better, anyway. I don't know if there is a difference there.

I was really afraid that I was going to crash as hard as I ended up doing. I knew that as High as I was, my Low would be that low. But the amazing thing is that I didn't have the headaches or the back flank pain I normally get when I crash. I know I said that before, but I wanted to repeat myself because it was so significant.

Since I've been on the Dex, I feel GREAT! I mean really wonderful. There have even been times where the washing-machine noise in my head has completely stopped! It's been amazing to have that noise shut off, even if it's only for a few hours at a time.

I don't know what to expect tomorrow when Chris shoots me full of that stuff to see if I suppress or not. I don't know if it is going to call the head-aches that the Dex has been able to put off. I just don't know.

But one thing I am going to do is ask for a prescription for Dex! It makes me feel... like a normal person. Like I've been able to strike a wonderful balance between that High and Low. These last couple of days have felt nothing like when I Swing up High from my Low, because I know what those feel like. These last couple of days I have felt like I think Normal is supposed to feel like (except the part where I have to get up at 1 AM to take the dex or the 4 am Potty trips.... I'm pretty sure that Normal doesn't include those

The last time I did the dex test, it didn't seem to have any affect on me. Nothing that I could detect anyway.

But oh mamma! What a difference this time! I feel absolutely great on it. I think partly because I was headed for a land-me-in-the-ER crash, and this time, while I did have an extended period of "extreme weakness" I haven't had the terrible headache that I normally do.

How terrible to have a normal headache. Sorry, but that's just odd to say that. To be like that.

After the Terrible High I was on Tuesday, this crash should have been just as bad, but since I've been on the Dex, no headache! No brutal back ache!

I wonder if I'll be able to talk them into giving me a prescription for it to take home.

It is wonderful to not live on peracets for half the time. Just wonderful.

Anyway, sorry for such a long post.

I prolly won't post again until Saturday. I'm still in Portland at my friend's place. Hopefully I'll be able to leave mid-afternoon. If it gets much later than 3 pm I'll have to stay another night because I cannot see in the dark. When you can't see in the dark, you don’t' get to drive in the dark.