brighter outlook/ Memorial Day

Jillian still has three days in the hospital, but she's receiving a treatment developed in France (I think they have a higher incidence of cystic fibrosis in the northern European region than in the US, hence a higher level of research) that appears to be doing good things for her. it's not fighting the pneumonia all that faster than are the other drugs she's being given, but it appears to slow or prevent the damage to the lungs and airways that typically occurs with each case of pneumonia that a cystic fibrosis patient gets. Cystic fibrosis is sort of a cumulative thing - a patient typically loses a little ground and a little bit of their lung space to the invading bacteria each time they contract pneumonia. i believe it's known as colonization. The bacteria (for most CF patients it's more often than not a particular bacteria that invades; for Jillian, it seems to be pseudomonas, although she's undoubtedly had other forms somewhere along the lone) tend to gradually take over the lungs. that's the reason CF patients eventually need lung transplants.

As bas as the idea of a transplant sounds, this wouldn't be such a terrible thing except that lung transplants are probably the transplants that are the least likely to "take, or to be successful. There's a high incidence of rejection. The drugs a patient has to take to or even rejection of the new organ -- and lung transplant recipients need more than do the recipients of most donor organs) also lowr a patients resistance to everything else, so it's quite the vicious cycle.

So if Jillian can hold off the major damage each time she contracts pneumonia, and she's probably going to get it once or twice a year at least no matter what she does to prevent it, she's greatly postponing the day that she one day needs a lung transplant. this means that she might live to be a grandmother. Additionally, this new treatment is safe during pregnancy, so she can have less aggressive antibiotics and ones that are safer to a fetus during pregnancy, which is a huge deal to her.

Tomorrow Jillian will try to walk a few steps totally unassisted.

Classes have been a bit boring, mostly because I've had trouble paying attention. I've managed to focus during "The Physics of Fractures." I found out that at my three top choices of med schools, that's a 1st -year med school class, and with an A, they'll all accept it from my university. So far I'm still easily in the A range, so unless a disaster occurs, I should be good.

             where most of the people in my prospective band live, which may be indicative of just how sophisticated the band is; at least they're not frat rats

This really grungy guy in "The Physics of Fractures" with me wants me to join his band as a keyboard player and fiddler. I don't know if I'm up to hanging out with the band and with the crowd that follows his band, and I don't think it would be a particularly impressive addition to my med school resume 9to the point that I won't list it, obviously) but I told him that once finals are past, I'll consider it, since all I'm doing is a daytime internship and a private violin to prep for the senior recital next year.  Some things you just need to experience for the experience of it. as long as I don't drink anything with PCP in it, and I'll be very careful to carry my own sealed drinks everywhere, I'll probably be OK.  I personally think I'll look a little stupid on stage with them, as I don't exactly look like a rocker chick, but that's really their problem, isn't it. I'm NOT dying my hair purple to fit in.

I hope everyone is prospering and is planning a lovely Memorial Day weekend.  I'm kicking in my share of the money for flowers for the various dead relatives, but visiting cemeteries gives me the creeps, so I'm not doing the grave-cleaning and flower distribution work myself.  If i get the opportunity, I will travel north to visit my older baby twin brothers' graves, though. my brother and i try to do it on or near their birthday and on Memorial Day weekend even though Memorial Day is reall about the military.I make the exception to my usual wimpiness and squeamishness in my brothers' case. for a few reasons, one of which is out of respect for my parents and out of empathy for the loss they suffered.  Another reason is that I don't for sure know that my parents would have had Matthew and me had Nicholas and Christopher survived. My parents have never said, and we've never asked. If my parents would have stopped at two children, in a way Nicholas and Christopher involuntarily made the ultimate sacrifice for Matthew and for me.

To those of you who are less easily bothered, I offer my admiration. It's an unpleasant task, but cemeteries would turn into areas of disrespect for the departed if someone didn't take care of the graves.

inappropriate song for a strange time

My immediate area, which is presently the hospital,  is in the middle of an unforecast thunderstorm. I don;'t think the weather service has even figured out it is happening. We don't have tons of thunderstorms here, so it's a bit exciting. I'm operating on battery,so my computer's not going to be blasted. I have no idea if the hospital needs to shut down its server at some point, but  that's not really my problem.

Anyway the video I posted, which is  "Song for a Winter's Night" by Gordon Lightfoot, poet laureate of Canada, seems inappropriate for the weather we're currently experiencing here, except that  i once attended a Lightfoot concert where he told the audience that the song -- with all its winter imagery -- was written in a Cleveland hotel during a thunderstorm.  If I seem to be age-inappropriately obsessed with the works of Gordon Lightfoot, I'm not. My dad knew Lightfoot's longtime lead guitarist (who passed away about a year ago) so anytime there was a concert anywhere near us, we usually went. Rest in peace, Terry, and everyone else, give the song a listen if you have a chance. It's quite pretty. Sarah MacLachlan and several others also covered it, but it was and always will be Lightfoot's song.
My Dad's late friend Terry is playing lead guitar on this version.

It's good that I have all my class work finished, as I would have an extremely hard time concentrating on it now. I have a one more test this week and three next week. The late midterms are things I could manage if I were the one sick and not my aunt. I'll need my full cognitive function for finals, but those are almost three weeks away. My aunt will probably be running and playing tennis by then, or at least taking her dog for short walks.

I'm at the hospital visiting my aunt. "Visiting" is probably a misnomer. I'm watching her sleep and occasionally open her eyes and try to say something, which is not easy with all the tubes she has connected to her. This falls under the heading of "too much information," but one tube she does not have is a bladder catheter because they're breeding grounds for pseudomonas aeruginosa, and the last thing in the world she needs is one more way for that pathogen to invade her body. Once she regained consciousness, she demanded her regular undies back in place of the pull-ups she was wearing. (They were actual Pull-ups brand; the largest kiddie size fits her right now.) Bedpans were too gross for her as well. Even though she's not strong enough to to hold her own glass of orange juice, she demands to be helped to the bathroom because the remaining options gross her out too much. My dad says it's a sign that she's most likely going to live. Another sign that she'll ultimately defeat the evil pseudomonas aeruginosa, my dad said, is the expletives she utters despite her multiple tubes each time her pleural cavity is drained.

I'm too much of a coward to be out in the middle of a thunderstorm,  creating a photograhic history of the event. This is a generic photo I found somewhere. It basically captures the essence of what's happening here without my traipsing out in the middle of lightning like the complete fool that I usually am, which is how I justify its inclusion.

maybe a good sign

When my aunt's pleural cavity was drained, she received only a very light local anaesthetic because she is comatose.  Those who were present during the procedure say she was very uncomfortable.  This is, we hope, a sign that her coma is lightening and that she is closer to regaining consciousness. we hope that's the case, anyway.

pneumonia, pleural effusion, and popularity-based healing and salvation

Thanks Becca. I think I'll be OK. I'm trying hard not to make this about me, because it's not, and part of being an adult is that every crisis that happens to someone close to me isn't inherently about me.

My aunt is breathing on her own. She's still comatose, but the relatives --doctors who are not her physicians -- think she is stirring and showing signs of coming out of the coma. Then again, they're all related to her and may be seeing what they want to see.

They've identified psuedomonas aeruginosa as the strain of bacteria causing Jilly's pneumonia. It's one of  three or four common bacerial causes of pneumonia in cystic fibrosis patients. That allows the doctors to give a more specific antibiotic to target the bacteria. I'm sure her doctors already started her on it, although I don't know what the antibiotic is.  She also has pleural effusion, which is, I believe, a build-up of fluid in the pleural cavity above and protecting the lungs. The prblem is that it can be too protective, which causes a whole new set of issues.It can be treated with antibiotics in less severe cases, but in Jillian's case, the fluid has to be drained by needle. She's out of it enough that pain is a minor issue, but the doctors are still administer a local anaesthetic just because comatose patients sometimes remember pain after coming out of a coma.

My dad said that if the antibiotics work and she has a good night tonight, she should wake up tomorrow and the worst may be over. The pleural effusion may return, which means  it will have to be drained again. The doctors use better drugs for pain if she's not comatose, but it will still hurt. That's probably the least of her problems, though.

At least none of the followers of Aunt -----'s cult have discovered anything I wrote, so I haven't received death threats.

I'm not stupid enough to blame any of this on  Aunt -----. I just find it a little sickening that she plays the martyr role with such virtuosity because she bore a child with a birth defect that was successfully repaired. There's only -- gasp -- a scar! that cannot be seen, only felt.  I'm terribly sorry the tiny baby and her mother went through this, and I'm even happier that the little girl made it through with flying colors. And while I know it hurt me terribly when one of my adversaries' attorneys advised me that it was time for me to get over what was done to me and to get on with my life, and therefore agree to lift many of the terms of my attackers' probabtion, not that it was totally my call to make, anyway. Maybe what I'm saying about Aunt  ----- is similar to what was said  to me.  Somehow that's not the vibe I get, though. It seems more like, while I'm not trying to minimize the seriousness of her baby's condition at birth,  hers is behavior of a drama queen.

Anyhow, I'm not going to be a martyr over this particular situation. My aunt has prevailed in tougher situations than this one. Odds are looking more and more in her favor in this situation as well, although I worry about risdual and cumulative damage to her lungs.

I'm just thankful that I don't believe in a popularity gospel (which my religion somewhat supports, with its "Pray for the Aldo Massaro family" engraved brass placards screwed into the pews, with different names of course, depending upon who donated the money to pay for the pew in question;  it practically reeks of papal indulgences, but that's another topic for another blog) whereby the likes of Aunt -----'s depression and everything else will be cured because she has so many minions pleading for her, while my poor unknown aunt has only a few friends, co-workers, and relatives offering any prayers on her behalf. It gives me peace to know not necessarily that prayer is a combination of fairy tale activity and voodoo science, but that any outcome, however arbitrary it may seem, is not decided by casting ballots in terms of prayers. I hope I'm right.

Most of Us Are Cold at Heart When We Self-Analyze Honestly

                                      Auntie Jillian, please don't rest in peace yet.

I've reached the conclusion that very few people care about anything or anyone outside their immediate circle of family and friends. Sure, once in awhile something like the Connecticut school shooting happens, and we can all appease our senses of self-righteouness by sitting in front of the TV for a few hours pretending that it's a small world, and what hurts the families in Connecticut hurts us as well,  because we're all part of some circle of humanity. We may even go so far as to toss a few dollars in the general directionyof the traged. It's little more than empty words and  token contributions to ease our own consciences, though.

I epitomize this mindset as well as does as the next person. I don't  have any deep feelings about good and bad things that happen to anyone outside my own cluster of real-life and online friends and family.  When something bad happens to a small child, I'm bothered by it, but I don't think I'd be human if I didn't. Any sensationalized situation in the news hits home when I can identify with the victim through some commonality in our respective lives.. On the other hand, all the events the media doesn't sensationalize -- the average person who can't pay his rent, the  person who falls off his roof taking down Christmas lights and incurs hospital bills he has no way of paying and a job he can't do for three months, along with an employer who won't give him a desk job until his leg heals and possibly won't even hold his more physically-oriented job until he is able to manage it again,  the person who needs a kidney and whose relatives who might be matches couldn't care any less and who is not very high on the the organ recipient list, the person  who has both a kidney infection and a horribly infected  ingrown toenail and doesn't have enough time off to do anything about it   until mid-June, because she also has  thyroid eye disease, irritable bowel symdrome, and chronic kidney stones, and those conditions take precedence  on her missing work, so she hobbles to her pre-school teaching job each day and tries to smile at the children through her pain, all the while praying that none of the children steps on her toe.  I'm not altogether uncaring concerning the plights of  these people, but  I don't lie awake at night  worrying about them.

So why should I think anyone else should care that my twenty-five year-old not-exactly aunt but who functions as such is once more fighting for her life, for about the sixth time in four years? The answer is that I don't expect anyone else to give a rat's rectum about it. We're all in our own insulated worlds, and only my aunta friends and relatives acre, and , truthfully, i don't think some of them care all that much because they're tired of her illnesses. She has cystic fibrosis, so it's one caseof pneumpnia after another, some more serious than others, with an occasional colon or ileum perforation that almost casues her to bleed to death. Some of her own relatives even think they have better things to do than sit around hospitals waiting for my aunt to either get better or die. I will say, because I think my aunt would say it if she could right now, Don't it around the hospital on Jillian's behalf out of obligation, waiting for her to get better, or to finally get it over with and just die. If you have better things to do, go do them. The natire of her illness is that she is going to get sick, sometimes near-fatally, and this is going to continue until she finally succumbs. those of us who care about her hope it won't happen for a long, long time. The rest of you should probably get out of her life and go away.

Some people fall into the immediate circle of concern  of many people. It's funny how some people, Internet beings especially, engender sympathy in the part of others. An example in point is "Aunt -----" of the "Mommy Wants ---==" blog. Aunt ----- complains of feeling sad and of having PTSD because her daughter was born with a serious bith defect, beat it, and is now thriving.  Aunt ----- also has a mildly autistic son. i believe he's in the Aspergr category, lthough such diagnosis no longer exists in the most recent Never having given birth to a child, healthy or normal, I am not in a position of being as critical as I am going to be, but it won't stop me.  The real PTSD comes after losing one baby after another, or even after actually losing one child. The real PTSD comes after having one too many cases of tsukamurella or candida or whatever ravage your body and almost kill you. The real PTSD comes after a big, strong, high school offensive linesman uses two girls to hold you down and beat you up, then tries to rape and/or orally orally sodomize you (which intent wasn't entirely clear, as his assistants undressed me from the waist down, but it appeared to me that he was going for my mouth) but is unable to maintain the state of rigidity required for either, so he kicks your ribs and private parts instead. The real PTSD is what lingers when you don't know if the next person who coughs on you is going to give you your verylast case of pneumonia.

I'm sorry Aunt -----'s  child was born with a rare and often fatal birth defect, and I'm happy for her and for the child that the child beat the odds and appears to be thriving. I suppose the child is not out of the woods yet in terms of learning disabilities that may present themselves at a later date, but how many parents and children deal with the effects of learning disabilities every day without others placing  metaphorical hands on their brows to detect the presence of illness -- physical or mental -- or coming to their blog daily to inquire as to their well-being.  It's time for Aunt ----- to realize that her glass is more than half full, There may be more difficult times for her in the future, but she'll be better qquipped to face them if she buries her own PTSD diagnosis and rejoins the real world. I admit I'm saying this in part because I used to think she was one of the few who cared, but I've since decided that she cares too much for herself to care very much about anyone else. I also realize that if any Aunt -----'sminions find their way here, which is unlikely, I'll probably receive death threats. C'est la vie. No one's going to live forever, anyway, and I might even receive media sensationalism and post-mortem compassion -- not that I would be around to enjoy it.

I'm really just rambling and not saying anything that makes sense, so I probably should shut up before I say more things that incite death threats.

I Changed My Mind

Why pray for a person who is sick even if they're dying? What's the point? God knows the person is sick. God doesn't need anyone to tell Him that the person is sick. If God wants to make the person well, He can do it, And if other people's prayers would actually convince God to make someone well, how fair and just is God? A person who has lots of friends or Facebook friends gets to live, but the person who is quiet and does his or her job well and goes about his or her life doing charitable works quietly gets no prayers from other people, so that person gets to die, and maybe very painfully, because not very many people were praying for that person.

If that it how God operates, I want no part of Him. God, you know Jillian is sick. If you have the power to heal her, you can do it if you want to. It shouldn't have anything to do with how many people are praying for her,

It would be one thing if she were conscious and had the ability to ask for help herself. Maybe that would be reasonable. The stuff about how many other people pray for you seems arbitrary, sortof a popularity-based theology. If that's really the way you operate, I suppose Jillian will die.

If you are real and not like the Wizard of Oz behind the curtain, God, you can help Jillian even if 10,000 Facebook friends don't pray for her.

Please Pray

My aunt is extremely ill. She's the one who's 25 and not really my aunt, but I consider her as such.   She needs positive thoughtsl good wishes, prayers, whatevr works, Thanks if you can help.