And it's over

I'll be making a new blog soon. Write and I will give you the new url if you are interested.

Damn it

God, it figures. Yesterday I feel wonderful. Today, when I have no appointments and no tests, I feel like total crap. Today. Today I have trouble getting out of bed. Today I feel like I have the flu. Today you can see it on my face when I look in the mirror. Today my hands are shaking and it hurts to type because it feels like my hands aren't working, and the palms burn and hurt.

I'm trying to get my psych appointment rescheduled for earlier. Ache in chest and nausea make sense from a psych perspective.

Flu-like symptoms
Aching painful wrists, fingers, toes, ankles, like arthritis
Palms and knuckles burning
Hands shaking
Irritation in lungs, sore sternum, itchy skin over chest
Can't hold pen right, hurts to type

Those aren't psych related. They are not. If I can see that doctor, they can tell the internist, and they can do more. But I have to wait until Friday I guess.

Last night I had a major asthma attack. It was really bad. My medication didn't work as quickly as it should have to fix it, and I had to sit around for hours trying to get better, because sometimes my asthma gets worse in my sleep.

Mayo Clinic Day 1

I got into Phoenix last night.

I've had a lot of people ask me what I'm doing here since I got in. Like the enterprise rental counter at the airport. I'm not going to lie, I'm here to go to the Mayo Clinic. It's funny, though, how they just clam right up and seem really uncomfortable when I say that. So I find myself trying to say things to make them feel more comfortable, like, "Don't worry, I'll be ok. I don't look that sick do I?". Then they smile and start talking again. I think that happens a lot. I think it happens to people who are even more messed up than I am. What a weird role-reversal.

The enterprise rental counter is a damn fine looking group of people. I told them as much.

It took me nearly an hour just to find my hotel. Phoenix is almost totally on a grid, so it shouldn't have been that hard, except my hotel is on, like, the one weird street in the whole city. But it's near a lot of the funner stuff to do in this town, so it's ok. Then I got some dinner at the PF Chang's. While there, the bartender told me that I was a damn fine looking person, and that I was one of the few people he thought looked attractive in glasses. It was one of those instant cosmic returns on an investment. It made me feel good. I haven't felt overly attractive lately. There are many reasons for this. They are not important.

I drove out to the Mayo Clinic to make sure I knew how to get there. After the hotel finding experience I didn't want to risk it. I remembered why I don't like this city. It's like Dallas, only more economically depressed, and with less variety and more cactuses. It's sort of sad, because I think it could be really beautiful. But somehow the ball has been dropped from a public works perspective. They have a town lake in tempe, but it's very industrial looking, despite the fact that it's supposed to be a recreational area. I don't know. At sunset it's very pretty, but midday in the harshest of light, the faded out pinks and reds on the comic faux-adobe architecture aren't the best.

I also watched Grey's Anatomy. Holy crap what a great two days of Grey's Anatomy. It's sooooo good. Not doing so well on the medical TV show boycott. At least I'm not watching Crossing Jordan.

This morning I woke up way too early. Part of it was the difference in time, but part of it was that the hotel alarm clock was set incorrectly. I got up, and showered (didn't eat. wasn't allowed to eat or drink unti 2:00pm), and left at 9:00, except it was 8. So I had two hours to kill. I stopped at the walgreens on the way for supplies, but I was still over an hour early for my check in. It gave me some time to look around at the people. Nobody looked all that sick. Some of them a little bit sick, but the didn't look sick, they were just breathing heavily. I saw one woman who was obviously quite ill. My heart went out to her. But in general, everyone was in good spirits. There were banks of old people waiting for CT scans, sipping little radioactive milkshakes, talking to eachother about how much their hotels cost, and whether they drove, and where from. There were lots of old people. Every once in a while someone's name would be called, and they would get a milkshake, and join in the fun.

Mayo is impressive. Obviously the doctors are good. My doctor has specialist status in three areas and an MBA. He's a little bit of an over-achiever. But I think what really makes that place different is the support staff. First, they all have incredible attitudes. Second, they have a system. It's a good system. They move hundreds of people around in a swift and agile manner every hour. If something hiccups, they're on top of it. Two or three times over. I had an itinerary change happen around noon, and by the time I rode the elevator from the second floor to the first floor, three people had been dispatched to bring me a new sheet of paper with the new schedule. They are good.

I saw the doctor, and it's sort of a mixed result so far. I am happy in that he ran tests. He ran tests for even rarer endocrine tumors than I've been tested for so far. He ran antibody tests for certain connective tissue disorders, and one or two vitamin deficiencies. He ordered that my abdominal CT be re-read, and got new xrays and ecgs. But he said he thought that it was all going to come back normal. He said that I've had a lot of tests. He seemed to be thinking of things mostly from an endocrine perspective. What is a little disappointing is that he didn't seem to think much at all about my chiari malformation or any neurological ideas. And he seemed to ignore my issues with alcohol and some of the other weirder symptoms. And the only other specialist he referred me to was psychiatry. I'm ok with being referred to psychiatry. I just wish there were other medical folks in on the consulting. Maybe there are. I have another appointment with him on Friday after the psychiatrist. I may need to push him a little harder on this. We both agreed that some cognitive behavioral therapy would probably benefit me regardless of what's going on, so that's something to be explored. It helps people control things like heart rate, etc with their minds. He said I looked like I was pretty healthy, but then again I was feeling really good today. I hope I feel like crap on Friday so he can witness me when I'm not doing well.

I don't have any more appointments until Friday. I'm a little disappointed by that. He said that some of the tests he's running take a little longer to get back. I was feeling a little down about it, so I went shopping at this mega scottsdale mall. I figured if I'm not going to get a diagnosis, at least I could get a new swimsuit and handbag. And that I did. First, I found the perfect purse. It was shiny green patent leather. And it was $2000.00. Alas, it was not to be mine. But I found a cute little summery thing which is the polar opposite of christmas handbag. And I actually found a swimsuit. So, in that way the afternoon was a success.

The only other thing that happened tonight was that I had dinner with my ex boyfriend, Dan. He's doing well. He met a nice girl who likes rock climbing and scuba diving. He's a great guy. He deserves a really great girl. We went to PF Chang's. Again. After we went to his new house and we watched 'House'. Then I came home. I'm sort of beat. I'm hanging out in my new swimsuit because I can.

Tomorrow I'm going to sneak into some random apartment complex in Scottsdale and use their pool. There isn't one here, which is lame. I don't know what else to do with my tomorrow since there aren't any appointments.

Eh not so much

I think Hugh Laurie might be the only person alive who gets less attractive with a British accent.

It's hard for me to tell anymore if people are foreign, especially British. I don't think it's me. I think the British are losing their Britishness.

Who is this?

Tell me who it is who chooses to bake their Amy's Black Eyed Pea and Vegetable bowl in an oven at 400 degrees for 50 minutes instead of nuking it for 5 minutes in the microwave.

Another note about my dinner:
Jones Blue Blubble Gum Soda tastes like cream soda that you are barfing up--all stomach acid and vanilla.

I want my baby back

Oh my GOD I miss Andrew. You cannot miss a person more.

It's kind of like when you kind of have to pee, but it's ok, you can hold it, until you get home and put down the groceries and close the front door, and then you REALLY need to go. All of the sudden you can't hold it another second.

As the time when he gets back approaches, I find I REALLY need to see him.

Unsettling morning

This morning I had an appointment with the doctor, and I got a surprise female exam performed on me. They're really the kind of thing you want to gear up for, really get in the right frame of mind. Not, "OK, I'll be back in 5 minutes, and when I am, spread `em".

They also tested me for all kinds of scary stuff. I started freaking out, but then I realized that I've been tested for this stuff before, so it's pretty unlikely it will come back positive. And yet somehow it still freaks me out a little. But even my doctor said that it's pretty unlikely, but that it needs to be done.

This appointment on Tuesday can't come fast enough. I imagine I'll be having freak-out moments like this one over and over again while I'm there.

Dual parts

Part A:

Oh Lorelai, what did you do?


Part B:

Have you heard this song about

No mom I'm not on drugs I'm okay, I was just thinking you know, why don't you get me a pepsi.
And she goes:
NO you're on drugs!
I go:
Mom I'm okay, I'm just thinking.
She goes:
No you're not thinking, you're on drugs! Normal people don't act that way!
I go:
Mom just give me a Pepsi please
All I want is a Pepsi, and she wouldn't give it to me
All I wanted was a Pepsi, just one Pepsi, and she wouldn't give it to me.
Just a Pepsi.

I love that song.

Dirty dirty potatoes

I keep making myself baked potatoes and forgetting to wash them beforehand. That's probably ok, right?

I'm really into purple baked potatoes. You can't taste any difference, but they're *bright* purple and that's pretty cool, I'd say.

One day I hope I have kids to make purple french fries for.

Death of Self

Yesterday in church, I was listening and stuff. One of the blurbs from church was this:

The beginning of life is the death of self.

Meaning selfishness.

It tripped a thought. I am so afraid of being sick, disabled, dead. Why? I am afraid of losing myself. It's quite simple. I feel the need to preserve myself. I am a project I have worked on for a number of years. There are many cool things about me. I have created an image, a skill set, a personality. And yet, ultimately one day I, as I know me, will be lost. One way or another.

Maybe I have been going about this all wrong. Maybe I've been focusing too much on me and not enough on other people. If it's not about me, and instead about greater things, then losing me won't be that big a thing.

Maybe I need to pre-emptively lose what I am afraid of losing in order to free myself of this fear.

Tubing

Ugh! Finally!

I think the upswing may have begun. I can't be quite sure because I still am having some problems with my left leg, but I'm doing much better than I was two days ago. As a comparison, Friday I was unable to walk 5 minutes on level 2.0 on the treadmill. Today I was able to walk 25 minutes at level 3.0, and I even threw in a minute of 12-minute-mile running for grins.

Yesterday we had a lot of fun tubing. I used to hate tubing, because of the great tubing incident of 2003, where I got lost from my group, swam up and down the river 3 times, and then ended up sitting on the side of the river sort of unhappy drunk, tearful as I was unsure if I had been left in New Braunfels, and being sprayed with super soakers by drunk frat boys. It was apparenly some sort of flirtation activity, as they yelled things to me indicating that I should come over and drink with them naked. I often wonder how people in fraternities get into college in the first place, with logic like that.

In any case, it's much more fun now. I think I used to be the kind of person who would have asked "Yes, but what are you doing while you float in the tube?". Now I am ok with just floating in the tube. And sitting around floating in a tube with friends and changing scenery is a heck of a lot better than sitting around on the couch. The decision to go was sort of a no-brainer, and I'm glad I went.

Still waiting

Things have been really bad today. I think I might be coming down with something on top of all of the normal stuff. I feel sicker than normal, like nausea and numb, headaches, out of it. I'm not running much of a temperature, though.

My mom was very sweet to me today and spent a lot of time on the phone with me talking about things. She has a lot of trouble with this situation, understandably. I can tell she wants to be there for me. I think it's hard for her to deal with this. I've always been so strong. Strong willed, active, determined. I can't imagine watching this happen to your child.

Can't sleep. Restless.

Today had some good points. I saw Morgan for lunch and Molly for a movie. I have really good friends. I am very lucky.

I'm also excited because I bought Andrew a present today. I get excited about giving people presents. More excited than they probably get about receiving them.

I also picked up a computer case for myself. I got it at the JC Penney. In general I don't shop there, but I've been looking for a purse, and I can't find one, and Andrea said she got a cute one there. No such luck for me, just the computer case. I guess that's cool. I can't figure out why it's so freakin' hard to find a purse, but I'm happier to carry around my knit christmas purse than one of the ones I've seen in the stores recently. They all suck.

JC Penney makes me sad. The people working there tonight were kind of 'max special'. Max is Betsy's special cat. Andrew and I call people who aren't quite with it 'Max special'. If you met Max you'd get it. Maybe it was an off night for the JC Penney. I can't be sure.

Walking around the mall I felt sort of like a zombie.

Oh no, what if it's that?

Instead of the completely dysfunctional 'word of the day' I need to have 'Disease-I'm-afraid-I-have of the day' .

There was a reason I swore to stop looking up medical information. The symptoms I have overlap a lot of scary stuff.

Unable to learn from past mistakes

Every night I put a glass of water by my bed. Every 2-3 AM I somehow end up kicking it (yes, I am seriously disoriented in the bed to be kicking my nightstand). Many times I kick the glass off the nightstand and the glass breaks.

Last night was the third glass this week. I need to start using capped bottles.

Any hour now

OK, I'm ready for the upswing.

Yesterday was a mess. Today was a combination. Lots of ups and downs today. But right now I'm feeling particularly crappy. I feel super weak. I don't know whether to drink more or less, eat more salt or less. I don't know what to do. I don't know if it's safe to sleep.

Many times I fear that if I fall asleep I won't wake up. That I'll just stop breathing in my sleep, or I'll have a blood pressure problem that will lead to an arrhythmia. Sometimes I feel so weak it's like my body is just not inclined to breathe unconsciously. It really scares me. I hate being alone during these times.

Dating is a trick in this situation. I love my boyfriend. I love him regardless of my situation. He's beautiful and funny, clever, and sweet. Just being around him lifts my spirits immensely. I have no fear around him. But I know I can't let that go too far. He's not my husband. He did not sign up for any "in sickness and in health". He deserves the most normal healthy girlfriend possible. He's not here right now. I can't call him, either, because his phone is in the posession of some airport bartender named Mike, who I will meet tomorrow to retrieve said phone. Even if I could, I wouldn't want to.

It's a slippery slope, you see. It's not far from loving to be around a person and having them help you forget your pain, to being dependent on them and therefore not an independent human being. It's very important to me that I be able to do ok on my own. When I'm healthy I like being on my own. Need it. But right now in this suffering and fear I do not know how to be ok. I have not yet figured this part out. It's so much bigger. It's not being afraid of death, is what it is, boiled down to a little concise nugget. I'm not there yet. It takes most people a lifetime to get there. I need 50 years more experience.

I feel like I'm going to throw up and faint at the same time. Sounds messy.

Oh suck

In a few minutes I have a meeting with my manager.

Work is one of those really effed up situations these days. If you can't even keep yourself or your loved ones on top of what's causing your rare illness, then you can't expect a ginormous corporation to follow the subtleties of the problem.

So usually these meetings go:

Manager: Well, HR isn't doing what they're supposed to in helping straighten this out. I expected to hear from them about your restrictions. Have you been doing any work?

Me: Well, no, I wouldn't call myself productive these days. I've been really sick, and when I come in, most of the time is spent getting reoriented.

Manager: Well, you can use the remote access resources.

Me: Well, most of the time I'm not even well enough for that.

Manager: So do they know anything?

Me: I'm going to [insert new doctor/clinic/treatment diet info here]. Maybe that will help. I'm sorry that this is happening.

Manager: I hope you get better soon.

Me: Thanks.

Except it's much more excruciating and drawn out. And I leave feeling very very stressed and wondering if I'm going to be fired despite company policy that dictates otherwise.

I've had this meeting once a month for 5 months now. I just don't see the point. I do but I don't.