Keeping Death In Check

[Xenos]

might wanna see if you can get in on clinical trials.

Three steps ahead of you there! 

Oh, to be free of this demon!  My health would INSTANTLY improve.  I can't even begin to tell you how much my life would change.  Then the only REAL things I'd have to worry about are the broken joints in my body and my bad heart!

Fingers crossed, looking for info on the trials (as luck would have it, I have contacts at St. Jude's), and I will go Obi-Wan on them:  "I'm ready for the trials!"

[Sir Henry]

From the research summary:

Planning has begun for safety trials of the compound in healthy adults.

Doesn't that rather defeat the purpose? 

[rovingjack]

might wanna see if you can get in on clinical trials.

Three steps ahead of you there! 

Oh, to be free of this demon!  My health would INSTANTLY improve.  I can't even begin to tell you how much my life would change.  Then the only REAL things I'd have to worry about are the broken joints in my body and my bad heart!

Fingers crossed, looking for info on the trials (as luck would have it, I have contacts at St. Jude's), and I will go Obi-Wan on them:  "I'm ready for the trials!"

there is also this site for finding other clinical trials for malaria and your other problems besides. http://www.clinicaltrials.gov/

[Xenos]

might wanna see if you can get in on clinical trials.

Three steps ahead of you there! 

Oh, to be free of this demon!  My health would INSTANTLY improve.  I can't even begin to tell you how much my life would change.  Then the only REAL things I'd have to worry about are the broken joints in my body and my bad heart!

Fingers crossed, looking for info on the trials (as luck would have it, I have contacts at St. Jude's), and I will go Obi-Wan on them:  "I'm ready for the trials!"

there is also this site for finding other clinical trials for malaria and your other problems besides. http://www.clinicaltrials.gov/

I've been looking into them, but nothing is really looking hopeful at the moment.

At any rate, I wanted to share this song with everyone.  It's become my battlecry here lately.

https://www.youtube.com/watch?v=Fhop5VuLDIQ

I hope y'all find as much comfort in it as I do.

[rovingjack]

sooo recent events have me thinking I may be spending time in this page again. some test result coming back over the last four months are saying things like 'abnormally elevated' 'beyond maximum range for a healthy adult' and such. Multiple tests show it's getting more irregular not better. and the doc says all his training and most references tell about what to do when this goes below minimum, he's no idea what to do about going off the charts in the other direction...

Other than the fact that the only reference to a potential cause or causes all involve the word Tumor. and a few of them involve areas between the parts I use to hear with and the parts I use to see with.

so going in for untrasound this week to check and likely rule out the least dangerous potential cause and quickest fix. Because this is missing some of the classic signs of that. Then monday more detailed blood tests which might help us pick the next best choice for checking.

Not sure whether to hope for no tumor and mysterious abnormal health problems with no known treatments of expected course for the condition, or simple to cut out tumor and course of treatment afterwards.

[Sir Henry]

Whichever way it goes, I hope the process is speedy and relatively painless for you rovingjack.

I'm kind of hoping that your brain scan goes the way mine did last month - they found nothing. 

Spoiler: ShowHide

_{Don't say I never give you a feed line...}

[Banfili]

Wouldn't touch that one with a ten foot pole!

I have a copy of a brain scan I had a few years ago - there is a brain in there!

[Xenos]

So yeah, I can't take my pain pills mostly anymore.  Whole new world of pain, because the pills either A) cause mental issues, or B) cause uh, other issues (they make me hornier'n a dog in heat on viagra).

ON THE BRIGHT SIDE, the malaria seems to be fairly well in check since I started drinking this herbal stuff.

And Rovingjack, you'll be in my prayers.  I wish I had some words for that, but I honestly am at a loss.  Best wishes, luck, and all that.

[Xenos]

So a bit of an update on the situation with me...  I've been on chemo in the past couple of weeks.

Not going into too much detail as to why--if anyone is interested, they can message me--but suffice to say my whole life gets to change now.

And I'm not happy about that at all.

[Sir Henry]

So a bit of an update on the situation with me...  I've been on chemo in the past couple of weeks.

Not going into too much detail as to why--if anyone is interested, they can message me--but suffice to say my whole life gets to change now.

I really hope it's a change for the better. After everything you've been through so far, you really deserve it.

And I'm not happy about that at all.

Ah.

Stay strong.

[Xenos]

Working on it.  Really is a whole new world of pain.  Tired all the time.  But at least I can still smoke.  The doc don't LIKE that, but fuck 'em.  If I'm going to do this, I'm doing it on my own terms.

[rovingjack]

Good luck Xenos.

I can't say what is up for sure. The specialist I'm seeing is ... less competent than I would like.

Three blood tests in and they all say the same thing, my blood chemistry is seriously off in the exact same way for about half a year now. We did an ultrasound in one area, and we are fine there. Which I'm not sure if I should be happy about. That would have been the easiest fix. Literally an outpatient procedure and no worry past that point.

in ten days I go in for a head MRI. which is really the big worry. but after that should be an abdominal scan. Only the doc says only the two areas we'll have scanned could cause this. Which is complete bullshit.

He says after the scan, if it comes back he'll just put it down as idiopathic and we will periodically check the levels.

Which translates to two potential tumor sites going unchecked and ignored indefinately because this quack doesn't know to check my adrenal glands and a couple other glands in the region. despite my informing him. How he's a qualified endocrinologist when he has such an over simplified view of the endocrine system I don't know.

It may be able to sideline my primary care into a check of some of the alternatives as part of a regular exam. But the adrenal gland are the ones on the list I'm not sure how to arrange for somebody to check. It's the one that aside from my brain is the most risky. If they have tumors that go unchecked they are right next to things like kidney, liver and pancreas. Places we most definately don't want to bring a fight against anything malignant.

I may just have to try and force the issue.

[rovingjack]

I've been insulted doubly. They said about my MRI "Unremarkable" and in the same report they accuse me of being "normal".

Bah, fools, the lot of them. I'll show them. I'll show them all!

anyway, now I gotta figure out how to work around a idiot doctor that doesn't know enough biology and biochemistry to know that you don't just scan at either end and then shrug with an "I don't know, guess it's okay." The parts of the body that can cause the wonky chemistry that I currently have are more than two, and many of them are to be found in my middle, not on either end of me.

so I shall contact my pcp and see about getting a few blood tests that will probably create more questions than answers, but they'd be questions the fool specialist isn't asking about and really should be. And once we ask them we can look for the answers with more testing that should tell us more.

Seriously how does an endocrinologist see fluctuating cortisol and elevated and rising hormone levels and not look at the adrenal glands, check liver function and thyroid? Guys a risk to his patients.

[Sir Henry]

At least he's proven that it's not all in your head!

Can you get a second opinion?

[Xenos]

At least he's proven that it's not all in your head!

Can you get a second opinion?

THIS.  Get a second opinion if you're able.  I did, and it turns out all that chemo they hit me with could have been avoided if I'd done that in the first place rather'n just trust that they knew what they were on about since they were "Specialists."

Best of luck sir, I hope you get it sorted soon.  Thoughts and prayers.

[rovingjack]

I've had enough experience with the medical community to know better than to take any doctors word as anything better than an opinion from a human and thus prone to all the bias, conceits, mistakes and misunderstandings.

I've had a GI specialist who doesn't know the difference between β-Carotene and vitamin A, an endocrinologist that thinks the pituitary secretes testosterone, a dietitian who thinks that peanuts are related to almonds and that onions are a nightshade vegetable.

I've learned that if I'm to get any real healthcare I have to do it myself and the best doctors for me are the ones that support my efforts in doing that. Unfortunately getting medical insurance to cover these things means I don't always get a say in who I see or who I get a referral to. And the insurance gets to decide nothing more is needed based on a given doctors say so.

I am also not overly confrontational usually. My preference is to stick an oppositional doctor down and then make my way around them outside their reach.

In this case that would involve talking to my primary care physician and asking for some rather routine blood and physical exams that should present as slightly off if there are undetected problems, which should prompt further examination that will catch what the specialist wouldn't look for.

But in this case the effectiveness of this technique is a bit limited and I may just have to call tomorrow and ask how to go about getting a second opinion or a reference to a different Endocrinologist. If it becomes a real issue I may even try to speak with the head of the endocrinology department about potential risks to myself and other patients health and wellbeing brought about by either ignorance (compounded by inability to listen to information supplied) or lieing to patients and dismissing their knowledge of their own health and conditions to minimise his own workload.

[rovingjack]

the process of getting a second opinion is more difficult than anticipated. In the mean time, my health insurance seems to think that they don't need to pay anything for my coverage until after I'm broke each month and maybe not even then.

On the recent testing front, apparently I have elevated ketones, and protein excretion abnormalities along with some other unspecified irregulaities showing up. Getting a look at the data myself seems to be a labor of heracles that was never gotten around to. Look you bloody well woke me up with a phone call to tell me things are off and you want another round of the same tests, maybe if you showed me the tests I might be able to explain things. My diet IS high in vitamin c and low in carbohydrates. Things that may increase ketones and cause protein irregularities (unintentional borderline ketogenic diet essentially) as well as potential issues with kidneys possibly resulting from adrenal gland issues which is what the blasted endocrinologist should be checking but isn't. Not to mention what my messed up endocrine system is doing to other parts of me that may be altering the results.

ah well, another set of tests thursday. It'll be next week before I know anything there. Odds are good it will come back as nothing out of the ordinary. just another case of things mysteriously going off and then disappearing. I swear at this point I'm half temped to have them check for a xenomorph moving around in there or a tiny sumbarine full of scientists that stop at a different site from time to time and play around with the systems in my body... for science.

[Clym Angus]

Are you still around master Jack? Despite the medical establishments best efforts (or worst, depending on whether intent or incompetence has hold of the steering wheel) to botch things up right royally.

[Sir Henry]

Are you still around master Jack? Despite the medical establishments best efforts (or worst, depending on whether intent or incompetence has hold of the steering wheel) to botch things up right royally.

The unfortunately titled 'Last Active' line of his profile says that he was here this morning, so they can't have botched it that badly, thankfully.

[Clym Angus]

Yeah, should have been my first port of call really..
That said this is much more sociable.

[Sir Henry]

Absolutely. It's always better to ring the front doorbell rather than peering in through the windows at the back. 

[J. Wilhelm]

Not to mention much better than trying to break in through said window  . Here in the colonies you might be met with lethal force!

[Xenos]

So, I'm alive.  Barely.  The ONE MEDICATION that works on me is illegal in my state.  It helps with EVERYTHING.  My bad heart, my anxiety, my malarial relapses.

So yeah, I'm back at square one, just got out of the hospital, all that good stuff.  One reason I'm not around as often--been fighting like mad to get something that WORKS and is LEGAL.

[rovingjack]

whops sorry I've not been replying. I get into a state of frustration with medical stuff and throw my hands up and storm out of doctors offices for sometimes a few years.

Whatever my health problems may be I'm not at risk of death in the next six months, and the doctors seem dead set on enacting some sort of three stooges medical plan of ignorance.

So I've been doing as much as I can about living without spending the effort to argue about the process or get permission.

as it stands now: I can eat some grains now, but sugars/sweetners, salty, acidic or spicy foods set off symptom a bit like lactose intolerance. which in some ways is much improved over what it used to be. In some ways not much different.

Not positive on allergies to former safe staple foods, but experiences say not negative either.

I'm more or less in range of how I've been going about things for the last 8-9 years. So not as functional as a 'normal' but and not able to consume restraunt foods ect. But for the time being I've not passed out from gut shredding agony that caused me to pass out.

My blood tests still show endocrine issues, and I can tell it's having some effect on me, but it's not likely to kill me in and of itself.

The tumor risk is still there and mostly ignored by doctors, and refused a check by insurance. so until such time as a new symptom in the area comes up that might happen to prompt further investigation, it's come in and pay us every so often to tell you nothings changed and not to worry about unexplained abnormal results we could gets some answers to but choose not to.

I do appreciate the concern though. I drop in and have a read from time to time in other areas of the forum, but I'm still unemployed, and my time is very much split between looking for work and deciding to pursue some creative ventures.

I do still think I might like to work that idea of mine about what I'd like done with my remains when I do die into an actual thing that others could do. I just like the idea that I could be made into a working clock, of tools, or lamps and book ends, so that I can continue to be a part of making things happen or be useful to somebody on a regular basis. I have some ideas about how I might be able to make it happen, and I think my mum might have some cremated pet remains to do a proof of concept with before doing the research on legals of human cremated remains handling and building a business model. (If I do it I'll probably crowd fund through kickstarter and make the info open for others to duplicate freely, I'd never be able to meet multiple demands in any real time and it's something I want to see become possible in the world and I don't need to be monopoly holder)

[rovingjack]

and I should say thank you for thinking of me. It definately improved my mood. I'd been feeling a bit invisible lately. especially as I've been applying so much of myself to build and help along projects that benefit and support others and it seemed like every effort and word I said was unheard and unnoticed. It was a bit like yelling into the void of space, only I was accutely aware of everyone else around me. I've literally posted seven or eight status reports to friends and family and social groups I belong to each and there is no indication anyone ever saw them or knew I was there.

Those are the only things going on in my life right now; so it's very much felt like the last month, or more, that I'm on an desert island with a radio that picks up events all over the world but broadcast an indeterminant distance and I'm not sure if anybody is recieving.

So it was very nice to know that somebody was at least looking.