Geez. I never did get sleep last night. Probably because phriend Pham indicated that if red blood was currency, I'd be near destitute.
Finally got there by 7 AM. Traffic is not horrible, but still a slow down. After having to set some arrogant doctor straight, I got them to speak to my team, as they should have done from the get go. I will address some of this with Scripps admin. If I have to deal with stupid medical outfits, they need to correct some of the glaring deficiencies. Had I not held my ground, this dork would have been taking stool samples and doing other unpleasant and contextually inappropriate procedures.
He finally hid from me the rest of the day. But his boss will get some fire when I return.
They did the bone marrow biopsy---talk about a pain in the butt. It had its moments. Those results come next week. Looks like the game has changed but no use guessing specifics because I only know the general possibilities and they get treated differently from one another.
I had a friggin blood transfusion. Takes three hours. So, if I were strongly tied to certain religions, or if I were my late mother, I would have refused it and shortly run out of reds and platelets and been overrun with white cells. I did not think the prognosis would be good even in the short run without the fill up. "High test!", I said, "with Techron." They complied. Only the best for me. A negative.
The best thing is, people think I don't look sick or infirm. Better to look good than to feel good.
It's possible this can be controlled with various high dollar substances like forms of interferon.
When I think how fortunate I am to have access to some top notch doctors and facilities (despite the previously mentioned shortfalls) I am grateful. Many people around the world would just have to die. I'm also glad I made it a point to supplement my commie medicare (joking--but only partly), and I have supplement for prescriptions. Some stuff is pricey. So I did that right.
I am not as depressed as I was. Maybe because I knew this was coming, and maybe because I temporarily have some juice in my veins. Other than my traditional mix of ice water and lemon juice--no sweetener.
Doctors don't know what to make of me. Especially me singing the praises of denial as a treatment strategy, and making the guy doing the bone marrow swear he is an artiste in this field.
So odd, it feels like this is all child's play and I am just going along with it. But I do not feel like one of the afflicted. More like a research project or something. That disconnect is likely the denial part, but why get into it in a way that makes one feel bad?
I am still convinced this is going to turn around or work to my ultimate better good. It will be OK. Really.
Great gigs this weekend, Nate's Garden Grill---they love us, and are very kind and they have food I not only can eat, but I also like---not always the norm in vegetarian land. Not like Pine House. Wonderful place, but no good for my dietary habits. The tomorrow night, Rebecca's coffee house. Never know how that will work. Nice enough place. Half the time I know 80% of the room, but sometimes interesting beings visit.
Then Sunday afternoon the Adam's Avenue Street fair. Outdoor stage and who knows what kind of crowd, but plenty of people, whatever they be. It's an artsy sort of place. I think many crave our leader/singer, Sande, in a KD Lang sort of way, if you get that. OK by me. I like KD's version of Hallelua almost as well as a girl from Australia who used to communicate with me on garageBand.com.
OK. So I whined about transfusions and hooplah, and who knows what. I feel positive in an automatic way; not forced, thought out or contrived. Just feel OK with everything. But will be even more OK when we tackle this mess. Not really that bad. Just not to my liking or expectation of how one should keep the property of others, as in landlord's pad.
I can only hope that those who reject transfusions no matter what are wrong. I don't know the alleged consequences, probably varies with individual holy persons and their particular dogma. That is not to ridicule them. I am for choice. Maybe they are right---for them. I feel protected by something unseen. I just do. And I really am. But I do not know the ins and outs of all that. I just feel like It will be alright, whatever It turns out to be.
My story is so full of prodigious little rescues and such. If you were me or real close, you'd get it. Like lucking into medical services from being fairly poor and totally uninsured four years ago. And I have dealt with the real cream of the crop, or first stringers, at least.
I a beginning to believe there is something to the idea of having lessons to learn. But that makes absolutely no sense to me. Why and who? Why lessons and who is headmaster, OR HEAD MISTRESS. [I seriously hate the aggressive ignorance which leads us to reject the notion of universal pronouns because we are too mad at our lives to get it.]
Many think they know the answers but their explanations seem unlikely, wrong, or just wacko to me. That's OK. I'll just settle for feeling at peace. Or at least calmly accepting of reality.
Next week will be interesting. The biopsy conclusions. I expect the verdict to be "Ice Water in Veins".
Friday, September 29, 2017
This Is Really Nuts
When you have occasion to entertain notions of your mortality more than is usual, you think things like, "woops, better wear some pants to sleep, I might kick before I know it." Don't want any snide comments or other abuse I guess.
Mostly, though, it is the race to get the mess transformed into something nice and pleasant and beneficial to the worthy. Not saying I am the sole Arbiter of worthy. I am not that. Except when I am.
Mostly, though, it is the race to get the mess transformed into something nice and pleasant and beneficial to the worthy. Not saying I am the sole Arbiter of worthy. I am not that. Except when I am.
No. Transfusion? Don't even know how I feel
So, I finally get to the lab just before they close.
Whatever was in the system about my tests, these people were flustered. Odd. Anyway I know the work was to be done within four hours.
I received a call at about 11PM. Dr. Pham, my new best Phriend, seemed a lot concerned. Sounded like he would have had me run to nearest medical facility for bone marrow biopsy and transfusion. I told him I strongly disapprove of this turn of events.
By the way, since google has taken over all, I can't answer or leave comments on my own posts. So here we are again.
I also told Dr. Pham that denial had worked pretty well up until now, and that I think denial as a medical remedy is highly underrated. He did not even seem amused, which amused me that much more.
The number one big deal is to manage to get everything spic and span and leave no mess or hassle. That means cutting the government out when and where you can. That is so sick. I hope people quit accepting the bullying of the state, one day, and learn how to discern bullying from proper execution of the job.
Would I be feeling weak and woozy if not for Pham's call? I think not in the same way. I have taken on Pham's fear. I get it. The numbers are bad. But, usually, I can get by on worse numbers than most. I don't feel as bad as I could.
You're lucky we aren't married. If we were you'd be dealing with this babbling first hand. But the rest of them would be saved. I would not put this out there.
I just hope I can figure how to get the detritus of my life, whether physical or bureaucratic, cleaned up. That is my biggest worry. I guess when I get through this I will hire a crew of independent cleaners and pay them a ton. Then I can go on without that bugging me. It is only right, anyway.
I almost wish nothing of this nature had come up so that people could say, with authority, that I was just weak and making up stuff. But I haven't exaggerated things whenever I tried to confide. Of course, what are they supposed to do? Seeking to be understood makes for nitwittery. I forget how stupid that is. Seeking to understand has better results. Not to say there aren't times to understand later, eliminate the threat or aberrant being now.
Let's hope the situation levels out how it should. I think there is a chance it could.
Clean place, little pocket change to the righteous, a finger to state, ashes in Gulf Stream or other such locale. Better be good.
That's all I ask. Maybe they do this then leave you alone for a few weeks.
Funny. This bizarre few days, culminating in meeting, by phone, Dr. Pham of the Scripps clinic Phams, and if I had to describe how I feel in a word, the stupid, dangerous word, "love" is all that comes. Beats a lot of alternatives.
I think I will hang awhile and probably go in way early. The urgent place is 24/7. Whole thing is a big complex in the lovely La Jolla/Torrey Pines neighborhood.
Clearly, this event is a game changer. No avoiding the bone marrow biopsy now, unless my Dr tells me something I want to hear. Lots of people get them regularly. I do not care to do any more than is absolutely necessary.
This is the craziest turn ever. Now I no longer want to quit playing music. I'd much rather do that than not, right now.
Whatever was in the system about my tests, these people were flustered. Odd. Anyway I know the work was to be done within four hours.
I received a call at about 11PM. Dr. Pham, my new best Phriend, seemed a lot concerned. Sounded like he would have had me run to nearest medical facility for bone marrow biopsy and transfusion. I told him I strongly disapprove of this turn of events.
By the way, since google has taken over all, I can't answer or leave comments on my own posts. So here we are again.
I also told Dr. Pham that denial had worked pretty well up until now, and that I think denial as a medical remedy is highly underrated. He did not even seem amused, which amused me that much more.
It is possible that things have progressed. I hope not. I guess I write just to have it out there. I don't like the feel sorry for thing. Of course most people wish others did not have pain or illness. It happens. If people really cared about pain and suffering they would likely quit waging war and running jails like torture zoos. But that is another thing.
It seems I have just a few red cells to rub together and not much on platelets, which once bounced off the roof. And whites are up. Of course. Racist. Recipe for a disrupted day.
I have 2 gigs Saturday, and 1 on Sunday. Sunday is Adams Av something fair. We have a nice outdoor stage and play an hour. Sande has tried in years past to get this gig. Finally made it this year. I do not want to miss it.
Karen, the viola, is back from Greece. We had a little rehearsal tonight, sans bass player. That viola sound is just hard to beat sometimes.
I'm actually killing time. I did not want to get to the urgent care center before my regular hematologist gets in. I want his advice before any transfusions. His philosophy is never volunteer for anything to do with medical procedure unless you have to. "just like the military", he says. I agree.
But after my phriend, Pham, called, I find it tough to want to go to sleep. Maybe I won't wake up.
At rehearsal, I had no trouble playing. Better than normal I think. Probably because Karen is back. But I did get winded walking from the car to the house, 30 feet away. So with a new bunch of A neg, I bet I have energy. What if I take on odd new characteristics?
If I was my mother, and certain religions, I would refuse that, and most probably die. What a weird state of affairs. That is true. Not exaggerated. That is why phriend Pham was so, almost pleading.
There is that one part that all of a sudden feels a bit worse or thinks I feel worse. In reality, about like last night, but a bit better. The whole thing will be OK. Finally, medicare and insurance may start paying back as much as I put in. Up until now, even with the crony socialist subsidies, I have paid far more in than my adventure in healthcare has cost them. I like it better when I don't cost them or the public so much. Imagine though, with unsubsidized insurance, the average person must pay way more in insurance than what their health care costs.
I picked the right time to be poor but not totally indigent.
Dag nabbitt!!! It's like the check engine light is blinking. I can no longer ignore it. If I need a transfusion, and I am not bleeding, then I am not producing enough blood. Is this punishment for all the coldhearted years, running ice water in my veins?
And now, if I were those religions, or my mother, I'd be dying quicker than not. No, I guess I'll hope it is primo A-.
When you spend as much of your life in sort of a dream, another dimension, it is not such a big deal feeling like you're skirting the edge and could go either way. The big deal is not knowing how to gage your fellow humans; who to trust, what to say to whom, how to express what was really in here.
The number one big deal is to manage to get everything spic and span and leave no mess or hassle. That means cutting the government out when and where you can. That is so sick. I hope people quit accepting the bullying of the state, one day, and learn how to discern bullying from proper execution of the job.
Would I be feeling weak and woozy if not for Pham's call? I think not in the same way. I have taken on Pham's fear. I get it. The numbers are bad. But, usually, I can get by on worse numbers than most. I don't feel as bad as I could.
You're lucky we aren't married. If we were you'd be dealing with this babbling first hand. But the rest of them would be saved. I would not put this out there.
I just hope I can figure how to get the detritus of my life, whether physical or bureaucratic, cleaned up. That is my biggest worry. I guess when I get through this I will hire a crew of independent cleaners and pay them a ton. Then I can go on without that bugging me. It is only right, anyway.
I almost wish nothing of this nature had come up so that people could say, with authority, that I was just weak and making up stuff. But I haven't exaggerated things whenever I tried to confide. Of course, what are they supposed to do? Seeking to be understood makes for nitwittery. I forget how stupid that is. Seeking to understand has better results. Not to say there aren't times to understand later, eliminate the threat or aberrant being now.
Let's hope the situation levels out how it should. I think there is a chance it could.
Clean place, little pocket change to the righteous, a finger to state, ashes in Gulf Stream or other such locale. Better be good.
That's all I ask. Maybe they do this then leave you alone for a few weeks.
Funny. This bizarre few days, culminating in meeting, by phone, Dr. Pham of the Scripps clinic Phams, and if I had to describe how I feel in a word, the stupid, dangerous word, "love" is all that comes. Beats a lot of alternatives.
I think I will hang awhile and probably go in way early. The urgent place is 24/7. Whole thing is a big complex in the lovely La Jolla/Torrey Pines neighborhood.
Clearly, this event is a game changer. No avoiding the bone marrow biopsy now, unless my Dr tells me something I want to hear. Lots of people get them regularly. I do not care to do any more than is absolutely necessary.
This is the craziest turn ever. Now I no longer want to quit playing music. I'd much rather do that than not, right now.
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- John0 Juanderlust
- Ballistic Mountain, CA, United States
- Like spring on a summer's day
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