often we have no choice about our battles

My body is not very good at cooperating. Apparently while my mind was absorbing all those lessons on "group work" and sharing in the second grade, my body was busy readying itself for battle with... itself. It's a painful battle.

::sigh:: I am frustrated over all the medical stuff lately. Above all, I don't understand why doctors don't listen-- I have never yet been wrong when it comes to my body, my health. Every time I've said a shunt was broken/malfunctioning/siphoning/overdraining, etc, I've been right.

This most recent hospital stay was a nightmare as far as anyone listening to me. At the end of February I told the local docs that the incision on the back of my head was infected. They looked at it and said it was fine, not infected, don't worry about it. I left for surgery, and in pre-op told my neurosurgeon I thought it was infected. He also said it looked fine... So I woke up from surgery to find that, gee whiz, when he opened the incision a bunch of pus came spilling out! They had to debride it pretty extensively and shoot me full of antibiotics for several days. (I am pretty damn lucky they were re-opening that same incision rather than making a new one, or who knows what might have happened before they believed me.) They couldn't finish the operation because of the infection, so they stitched me back up and said they would finish things once the infection cleared.

Also before that surgery, I told my neurosurgeon that, in addition to the lumbar (LP) shunt being broken, my ventricular (VP) shunt was not working. He said that it was fine, he had no reason to believe there was a problem with the VP shunt. Fortunately they were going into the abdomen anyway, so he had a look around in there and found that the VP shunt was plugged at that end. He moved the tubing and cleared away the tissue that was blocking it.

THEN, after surgery, I was very ill. As soon as I would sit up, I would start having huge spasms of my diaphragm... Like hiccoughs X 1000. The spasms were terribly painful. I also began vomiting. The vomiting kept on and got so bad that I was throwing up blood. I told them that the VP shunt tubing had to be sticking me in the diaphragm. And I also told them that it was broken again.
They told me no, it couldn't be broken again so soon because they had moved it, yadda yadda yadda. When I went into surgery for the second time, they found that the tubing was indeed poking me in the diaphragm, and it was also clogged with scar tissue.

Those are just a few examples. I hate this feeling that I am fighting constantly to be heard. I shouldn't have to fight the very people who are supposed to be helping me.



Sometimes the news is so depressing. A twenty-year-old woman, Stacy Dow, of Scotland, is suing the NHS for the tidy sum of 250,000 pounds (nearly half a million U.S. dollars) because of an incomplete abortion in 2001.

At the age of sixteen, Ms. Dow learned that she was pregnant with twins. She underwent a standard abortion procedure, which doctors told her was successful. She was then given a contraceptive injection and told that she may gain weight and/or have irregular periods for a while. She did gain quite a lot of weight, missed periods, etc. She was astonished to learn, at 33 weeks gestation, that one of the twins had not been successfully "terminated," and she was too far along to undergo another abortion.

A healthy baby girl, Jayde, was born by elective caesarian in August of 2001. Ms. Dow is suing the NHS for the "financial burden" of raising her daughter. (Jayde's father died unexpectedly two years ago). Ms. Dow lives at home with the child and her own parents. The grandfather is now holding down a second job to help with the expense of raising the child.

Ms. Dow says she may explain all this to her daughter when she is nine or ten years old. What's she going to tell her? By the way, honey, I really wish you'd never been born. And since you're such a hassle, I really had to sue over it. Oh yeah, and, I underwent a procedure to "terminate" you and your twin, but it didn't work on you.

She claims that she had plans to go to university to study nursing, but had to give up those plans when Jayde was born. She does not plan to pursue any further education in the future.

I'm sorry, but what a bunch of bullshit. There are so many women out there who make it through much worse, and without the benefit of the grandparents willing to let them freeload.

Is this the world we want?


yes, no, maybe, i don't know

I had been meant to sign a lease yesterday, housing for this fall and the coming year after that...

::sigh:: For better or worse I don't know, but I decided it was a commitment I couldn't make right now. I feel like so much has happened.

Now I feel... Adrift? Disconnected? Uncertain? I have no obligations to fulfill, really, nowhere to be. I should be relieved by the weightlessness of it, but there seems to be an undertone of dread. What now? I seem to be out of orbit.

I had thought I would go back there and live, even if I weren't going back to school. Because I love the city so much.
The school is fine, I just can't seem to justify spending so much money (debt, too) to go there when I am not even sure it's what I want. For all the hype about this private university, its great rankings and academics, yadda yadda-- the university I was at didn't inspire me much. Like I said, it's fine... Just not so great that I can mentally justify spending several more years and many thousands of dollars there.

My parents would have backed me up either way, but I know they are relieved I didn't go and sign the lease. I would certainly have found a job there, but with my ongoing health issues there's no use pretending the financial commitment wouldn't be at least partially dependent on my father as well. So it is a weight off his shoulders that I didn't do it.

So now what do I do? What do I want to do? What can I do? I have already completed many of the nursing prereqs at my state university, and am thinking about making a go of that program. The school in general is not that great, but its nursing program is actually very well-ranked and hugely in demand. Easily the best program at the school. There's a 12 month waiting list for acceptance into clinicals, which would be okay since I've got some of the prereqs and general ed to finish anyway.

::sigh:: In some ways I question if my decision was the right one. Am I shying away because of a generalized fear of commitment? Should I return to university on the other coast? Should I try to strike out and live/work there? (it's not too late)

I haven't been back to the university since my December surgery, I am on a leave of absence from classes. And I have an incomplete grade pending for one course. Because I haven't physically been there, I obviously have not been able to continue the work to get a letter grade for the class. As it stands right now, I won't be back in time to complete the work. Which will leave a nasty "Incomplete" grade on my transcript. :( Unless I change my mind, go there this fall, and work my arse off to finish it.

::Heaves another great sigh:: And here I thought men were the ones with commitment issues... ;)

Something blogorifically scientific next entry, I promise!


MIA blogger returns

I have been MIA, and am now woefully late in making an update...

This hospital stay seemed to last absolutely forever! I was in for nearly a month, had two surgeries and a number of setbacks. Writing an entry about it seems difficult, I don't know where to begin! But I shall ramble and see where we end up. :)

Perhaps the best place to start is the present - I am home. I flew home the day after I was discharged, which one might say was pushing the envelope, but it has worked out okay.
My list of meds has grown unruly, as is almost always the case after a hospital stay of any length. I have more pills than I know what to do with! Being on steroids (just decadron) really doesn't agree with me, but we're having to taper the dose very slowly since, lucky me, I once again picked up "chemical" meningitis- That is, meningitis caused by an irritant, possibly blood or even my shunt tubing. My CSF eosinophil count has been high, which neurosurgeon says he sees infrequently, but steroids have been the most effective treatment for others with the same problem. (eosinophils are a type of white blood cell, CSF= spinal fluid) The steroids do seem to be holding things down for me, the trick now is to ease off them so as not to shock my system right back to square one.

Pain management continues to be an issue, but things are not as bad as they could be. Prophylactic pain control measures are sooooo very important with chronic pain! Patients who live with pain 24/7 have their own unique set of problems, yet many doctors remain ignorant. Tolerance to medications, pain "patterns"... It can all be pretty complex.

I've got to get in and have someone look at my eyes, to see how the optic nerves are doing these days. My vision has remained a little screwy, thus I am actually apprehensive about that. The nerve swelling does recover gradually, so I need to exercise patience, but it is still a little harrowing. Just to see, and see normally- Ah, how ignorant we are of bliss until it's passed us by!

The myoclonic jerks seem to vary in severity now.. They were surprised to find that my EEG showed no epileptiform activity. A big relief that it's not epilepsy, but the jerks and twitches can be quite a problem nonetheless. My legs are impacted most, but the worst for me is my jaw. I've got TMJ problems as it is, so having those muscles move without my consent is insult to injury a lot of the time.

Ah, ramble ramble ramble. It's good to be home. It's time for bed!