“To try to be better is to be better.” Charlotte Cushman

Thanks so much for all of your comments on my last post...

Linda - The PUS does suck (but my head will explode if I try to talk reasonably about them right now).

Also sucking? Insomnia... I'm totally feeling you jannie! (Current time: 12:57 am.. ugh!)

Janice - I totally could have used some jokes... Zack is awesome, and manages to say most of the right things, but there were a couple of times when...(well, you'll see)
Hugs right back at you - I'm so sorry I missed your call!


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This week's dr's appointment was a big disappointment to me: mostly a huge waste of time. (Although I am sporting a pretty spectacular bruise as a result of a new, substitute - read: not gentle - blood technician... Wanna see? ) Unlike most appointments with Zack, this one took about an hour. He poked my back (but very gently). We talked about my symptoms and any changes and all that crap.

And then he sat back and said:

"Well, we have some choices to make here. Again. And they are not easy choices. So here's what I need to know from you: Do you need a break?"

And in the minute or two before I answered him, I thought about it. I really, really thought about it. I thought about not having to go to the doctor every other week. I thought about all the times I have to go for these frightening or painful tests. I thought about all the different doctors I have explained myself to over the past year. The past three years. The past 12 and 1/2 years. And I thought about how great it would be to not have to explain it again.

I don't want to keep doing this, honestly. Most of the time I feel like I am fighting for nothing. I'm sick of hearing doctors say things like "Well we just don't know enough about this disease" and "the research is starting now... there are people out there who are working on this... they're just not there yet." I want them to be "there." I want to be through with all the hospital trips and the 27 vials of blood draws and the fricking questions with no answers. I WANT ANSWERS!!!!

But here's the thing:

Taking a break from all the tests and questions and doctors is one thing ---> but I just don't have the option of taking a break from my illness. And as hard as it is to do this every, single day, part of the reason I can keep going is because I know I am doing all that I can. Everything in my power is being done. Every ounce of spare energy I have is dedicated to feeling better. Not necessarily finding a cure (which I would DEFINITELY accept), or even figuring out with 100% clarity what the hell is wrong with me: I just want to be better.

So if that means I have to tell yet another intern why I won't stand up for their examination; Or if I have to lay in yet another tube, battling the urge to pray for them to just find. something. ANYTHING that they know what comes next with; Or if I have to keep setting aside that energy that I could be using to call my college roommate back or take my nephew to the movies for yet another specialist visit, then I am willing - for now - to keep doing all those things. And a million more things. Because there's got to be a better for me. There has to be.

So I told Zack that, while I certainly appreciated the option - and left it on the table for later, should I need it - that we needed to keep pushing. We need to keep going.

And we talked a bit about what comes next - Specialist X and Metabolic Clinic Y, and I thought about how nice it would be if I never had to meet another doctor in my whole entire life - but instead, I agreed to come back in two weeks, after these latest blood tests, so that we could take our next steps. Physically, the appointment was nothing more than a bit of extra stress, fatigue and pain: but psychically --> it was a toughie.

:big sigh: We keep plugging. Till we find better.


Here's the beautiful mark from the substitute nurse (Ms. "Oh my gosh, you have such bad veins! And the blood won't flow!")... Just FYI: You aren't supposed to wiggle the needle around and make my arm swell up: bring back my regular blood tech! This was it last night, less than 5 hours from when she took it. Today it's even prettier, (twice the size! better colors - more purple!) but my camera battery died (again - which is a whole 'nother rant....) so this is all I've got.