The Steampunk Forum at Brass Goggles
August 20, 2017, 02:34:43 pm *
Welcome, Guest. Please login or register.
Did you miss your activation email?

Login with username, password and session length
News: Brassgoggles.co.uk - The Lighter Side Of Steampunk, follow @brasstech for forum technical problems & updates.
 
   Home   Blog Help Rules Login Register  
Pages: 1 [2] 3 4 5 6 7 8 9   Go Down
  Print  
Author Topic: Keeping Death In Check  (Read 7617 times)
Banfili
Zeppelin Captain
*****
Australia Australia



« Reply #25 on: April 28, 2014, 03:39:24 am »

"Remember, if all else fails, castle."

Xenon, to really confuse the issue, castle queen's side!
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #26 on: April 30, 2014, 08:52:53 am »

well frustratingly the results from my latest testing are in beurocratic limbo leaving me to wait for further results and that has my mood more volatile than it aught be, where I'm both more likely to make stupid mistakes and more likely to feel like the world is against me when mistakes happen.

But I suppose now is a fair enough time for sharing what news I do do have and have been worriedly holding close to myself in case speaking of it might make it disappear.

I've gained the weight I lost at first back. and I've managed that in part by eating ham and sushi, two things that for all the world should be making me sick left and right but are not. I'm confused and a bit frightened instead of excited as I aught to be. I know it's not something that has secretly been the case all along, because three days before I went in for the scoping I had a crohn's morning. Something I spent seven years on and off getting used to being part of my life and routine.

But my experimemnts the following days with things that I'd not had in seven years, and I knew my crohn's would give me hell for... only they didn't. Then I went in for the procedure and when I came back out my intestinal tract has some diverticulosis but aside from that looks healthier than it did seven years ago when we first tried to figure out the cause of my symptoms. In fact the GI specialist says it looks about as one should expect a healthy persons colon to look.

So now there are two options that I can only guess at: Inexplicably the crippling disability I've been shackled to for the better part of a decade has chosen now to go into remission, or it was and has been something else entirely for the last seven years that leaves me in pain and unable to eat most food and it has suddenly changed habits recently before we can find signs of what it might be.

The prospect of either doesn't make me feel particularly great because remission is usually random and not perminant, and a mystery illness drifting around your insides hitting you with disabling pain and chronic problems that cause you to lose half your body weight...

The latest test was a barium wash through the small intestine, the last part of my digestive tract we've not seen. From what little I saw: no obvious obstructions or irregular outgrowths. So any issues will be more subtle and non-urgent which is nice enough, and they may in fact come back with traces of crohn's which can present in those areas. I expect something of that sort, and in some ways that at least allows us to manage it as a known entity we can plan for even if the progression and complications make life progressively harder.

I almost don't dare hope that it is not crohn's but instead something easily resolved or possibly something we have accidentally resolved recently and unknowingly. That seems too hopeful, and given my experiences over the last seven years, extremely doubtful. I cannot think of anything else that would explain my symptoms besides crohn's.

So aside from the damage done to me by the antibiotic, including panic attacks, ringing in ears, and tendon pain. And the recent issues of allergic responses to foods and possibly environmental factors, and occasional blood pressure crashes... I'm looking to be relatively healthy in the near future. And through management the antibiotic issues should lessen and mostly fade during the course of the year. Hopefully we will be able to resolve the cause of the blood pressure issue and find out what is happening with the allergies.

 All I have to go on is the fact that in the last seven years I've managed to handle things such that my system is healed from what it once was, I'm currently not experiencing the strong digestive symptoms I dealt with every day for years and not having the crippling attacks I had before. I've time to source safe food options to serve as alternatives to allergens in cases of relapse.

I think I should just take that as it is and work with it until I have something more concrete to stand on.
Logged

Banfili
Zeppelin Captain
*****
Australia Australia



« Reply #27 on: April 30, 2014, 10:35:40 am »

That sounds like a plan, rovingjack - go with the good that you have, and live in hope.
Logged
frances
Zeppelin Captain
*****
United Kingdom United Kingdom



« Reply #28 on: April 30, 2014, 07:57:59 pm »

Well congratulations.  And long may it last.
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #29 on: May 01, 2014, 01:16:34 am »

okay now I'm completely confused. Finally got the results from the latest test. No signs of problems of form, or damages done. For all intents and purposes it seems my lower GI tract is about as normal as any of yours, aside from some diverticulosis.

This completely fails to explain or aid it control of whatever caused these past seven years of digestive nightmares. Is it crohn's in remission? was it chronic and or repeated bouts of infected diverticulosis? was it opportunistic gut flora overgrowth? Are there other possibilities I'm unaware of?

It's not academic because if we don't know what it was going on we don't know if it's actually resolved, resting up, or what. If I was vulnerable to it the first time, it persisted for seven years and we didn't do anything to resolve it... we can't prevent it again and when won't know what to look for to avoid it.

*phew* just need to get that panic out of my system a bit. I hate the fact that the only thing that really has changed aside from mild relief of symptoms now is that where we once had ideas we now only have unknowns.

My only recourse is to use what I've been doing for the last seven years because that has at least afforded me moderate success and handling my situation.

But hopefully with time I can settle to the point where I can get back to the living. I think I will sit myself back down at a tablet of paper and move forward in my goals toward my bow top wagon home that I might build in the next year or two if I can manage it. I well continue to do what I need to in order to mend from the problems this year has dumped on me (levoquin toxicity, allergies to safe foods, emotional shock and loss of job just to name a few). I sorely want to get back into living with an eye toward the future, not this living for the day because we don't know how many I have. That's great in some ways and should be done from time to time, but the loss of a future is harsh in many other ways.
Logged
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #30 on: May 01, 2014, 09:44:31 am »

That does sound like a nightmare, Jack. A slightly less painful nightmare admittedly, but as you say, the not knowing is the worst. Usually in these cases the not knowing is because we're waiting for results, but for the basic diagnosis to come under question after seven years is extremely odd. Hopefully the Crohn's is in remission and will remain so for a long time, but I assume that the next phase is another barrage of tests to find out. Good luck

In the meantime try to make the most of your improvement and be as positive as you can. Not an easy transition after seven years, but it does sound as if you have a future now that just wasn't there a few weeks ago. Make the most of it.
Logged

Cry "Have at!" and let's lick the togs of Waugh!
Arsed not for whom the bell tolls, it tolls for tea.
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #31 on: May 06, 2014, 03:59:35 am »

I've a couple months before my next testing for answers still, apparently nothing going on that should compromise my ability to live as near as they can tell. And I'm still waiting for results from the testing on my biome (I should have done that around new years, by now we'd have data at least).

I think however that I have found a difficulty in digesting fruits. it seems I'm not completely asymptomatic. I will simply have to tread carefully.

I have a panic attack last night it seems. Which makes me aware of just how fragile a state I'm in mentally lately.

and I spent a good portion of today in what seems to be a depressed and recouperating state, until it occured to me that I shouldn't by any right feel that way. Healthwise near as we have been able to tell the biggest problems I have seem to be a few food allergies, and intolerance, a bit of low blood pressure issue likely from so much being in bed sick, and the after effects of the antibiotic. Two of those are theoretically not perminant and the others are minor things to manage. So really I don't have anything that should make me feel like the sick boy from the Secret Garden book.

But I will confess there are a couple hard things I'm facing lately.

One is the difficulty in moving back into planning for a future when you so recently had to confront the prospect of likely not having one. It's so much more difficult to imagine there will be hundreds of tomorrows when you've recent had the fragility of your grasp on life is. It seems raging and silly optimism to believe that such a fragile thing as a human being could reasonably expect to be around in five years time. Yet the world just goes on like it's a given.

The second thing hanging onto me is that while I've won the battle in the past with depression and feeling mortal... some of my technique seemed to have only worked because I was more nieve then.  I tend to think of it like this: I've developed as a reader and writer enough to see the plot holes in the faith I used as foundation for my leg up. I'll avoid going too much into it for forum rules, but suffice it to say, my inner skeptic is stronger these days than my spiritual braces.

And the final struggle for me lately has been the realization that in my life there is nobody beside me. Aside from online contacts there is really only one other person who regularly sees my, and another who sees me on occasion. The feeling is one where I could go missing for days and nobody elses life would be effected. And aside from the other persons who rent this house with me, a month could go by and the first person to wonder would be the land lord wondering about my share of the rent.

It dawned on me that after acknowledging that I might not live to 75 years old, and I may never see some of the future that could heal me to allow for a longer life span in better health to experience a fullness I'd need to be okay with the end; and what I really wanted by that end was to be significant. Not in the sense of achieving something great or leaving a legacy. I don't mean something like saving the life of a starving child in some other country that through my contribution is able to grow up and invent something that ends suffering for millions, all because of something I did.

No I mean that the day I die will be one of the most significant things in my life. It's a change so fundamental that nothing will ever be the same again and it retroactively applies context to everything that came before. And I need in some way for the moment to be significant for somebody(s) other than me. Ideally somebody(s) who could be there with me. Someone for whom that moment when I'm there and then when I'm not is so fundamental a change that nothing will ever be the same and it retroactively applies context everything that came before.

If I never did anything else in my life but achieve that, I could take that. But right now it feels like I could not be further from that being the case if I tried. It's a true 'I've wasted my life feeling'. and on top of that I'm not sure it's something I can change without compromising who I want to live my life as, in order to be the person I need to die as. It's one of those moments that feels like 'you can't get there from here'. So I may have to sell out who I live as to get the death I want, or be true to my journey for myself even if it means it's all insignificant in the end.

Theres just got to be a path that work, I just am so burried in troubled feelings and the time is not right for me to be able to see it.
Logged
J. Wilhelm
╬ Admiral und Luftschiffengel ╬
Moderator
Immortal
*
United States United States


Sentisne fortunatum punkus? Veni. Diem meum comple


WWW
« Reply #32 on: May 06, 2014, 06:24:57 am »

Rovingjack:

You are not alone in this feeling of "what have I done with my life?"  Wanting to be significant to another human being has been the bane of my existence well, since forever.

There is more than one way to become lonely.  Illness is one of them.  Anxiety is another.  Fame and fortune are other ways to isolation, addiction, and you can go down the list.  But the overall effect is the same.  We have a limited lifespan on Earth - and I'm having a hard time coming to terms with that.  I don't see my life as "fair" and yet it's absolutely nobody's fault.

I have, however witnessed a couple of miracles as of late, as if God, Goddess, or Gaia or whatever you want to call the conciseness of this universe has noticed the precariousness of my situation. Time after time, after time in the last 4 months I've had an invisible hand pushing me back in the train when I was already hanging out the caboose. In a completely inexplicable sequence of events that seem as improbable as winning the lottery, except that you are not being rewarded with what you want, but rather, what you need.

A person with a Christian identity would immediately point to divine intervention. hat divine intervention is not required. While I'm a scientist first and foremost, I have come to realize that sometimes you just have to let go, and allow the universe to decide what is best for you.  What you are feeling is the hand of fate reshuffling your future.  Have more faith that this hand will take you to the right path.  Regardless of your belief system this seems to be a universal truth:  you are part of the whole (even from the Atheist point of view).

Sounds corny, but I'm starting to see this is true.  You are only in partial control, but never in complete control of your life. 

Is that surprising?  Why? Let's looks at the purely atheistic perspective:  it can't be denied that in the absence of a greater being, the universe indeed has attained consciousness.  It is us, of course, and the countless other sentient creatures that must inhabit the rest of the universe (and of which we are a minority, I'm quite sure if I believe mathematical estimates).  That means that we are part of a collective. Whether you want to assign a personality or not to that collective is irrelevant.  It exists.  Pure and simple.  Because if it didn't then our consciousness would not exist.  And all of this does not require any divine presence of any kind.  Big Bang and evolution is all there.

If we are part of the collective consciousness that makes the universe, doesn't it stand to reason that we could have an effect on our fate,  and yet still be largely subservient to events out of our control??  The trick is learning to navigate with the control that you do have at certain times, and learning to surf and let yourself be carried when you have no control at all.  It's a careful balance between control and lack of control, and how you master it will define how long you will live.

What you are doing is negotiating with the collective intelligence of the universe, for in the end we all go to the same place where we came from.  We are not more individuals, you and I than the living cells in your brain, arms and legs.  Nor can you expect the collective to be aware of your own individual existence (well, maybe if you kick and scream hard enough, like the pain that ensues when you accidentally bank your thumb with a hammer - suddenly you are very aware of that part of your body).

Once you realize that, then you will know what to do and how to accept what comes your way.
Logged

J. Wilhelm
╬ Admiral und Luftschiffengel ╬
Moderator
Immortal
*
United States United States


Sentisne fortunatum punkus? Veni. Diem meum comple


WWW
« Reply #33 on: May 06, 2014, 07:19:39 pm »

Oooops!  Posted in wrong Meta-Club  Grin
Logged
Xenos
Zeppelin Admiral
******
Sudan Sudan


Capt of the "AO Victoria," Cdr of the Aeronauts!


WWW
« Reply #34 on: May 14, 2014, 06:45:47 am »

RovingJack, I was doing some reading on some pancreatic issues and whatnot for a friend, and I came across an interesting tidbit: 

Something called Proteolytic enzymes THEORETICALLY reduce complications from food allergies/bad reactions by breaking down the proteins into a form that cannot do harm to the system. 

This is all purely academic, but apparently what few trials have been done have been positive.  I don't know if you've already tried something like that, or if you've even heard of it, or if it will help with your issues at all, but I figured it might be worth a shot, yeah?

Here's to hoping you get some concrete answers as to exactly what is going on soon.

As for me, first off, sorry for not checking in for a while...  It's been a busy few weeks for me, with a fair few ER visits.  On the bright, I've beaten the malaria back into dormancy, FOR NOW.  Unfortunately, though, not without cost.  It weakened my system to seasonal allergies in such a way that I'm now on an antibiotic daily, a steroid-laced eye drop (because the pollen is literally blinding my already-screwed up left eye, and I fear the infection may spread to my right before too long), and due to my recent surgery, it turns out that, uh, intimacy, uh, may be a thing of the past for me officially.  Not STERILE, per-se, but not able to perform, due to shoddy work on my member. 

Still, I'm taking it one move at a time, and working with my doctor on alternatives to keeping those bastard parasites holed up in my liver PERMANENTLY.  We're shooting for what would be a record for me, 18 months no relapse.  The clock started three days ago for that, when the relapse CLINICALLY ended.  So 18 months from now, if I've not had a relapse, we THINK the treatment plan (it actually involves "alternative" medication (including a couple of fingers of whisky nightly), meditation, and a few other things) may work.  If I can go a full 2 years without a relapse (the longest I've been thus far was when I had regular supply of quinine, managed just over 13 months), while I will not be CURED, we think we'll at least have a handle on keeping it at bay (obviously).
Logged

WARNING:  THE ABOVE MAY BE POSTED UNDER THE INFLUENCE OF PAIN MEDICATION AND/OR ALCOHOL (read: Don't blame me for bad spelling or incoherence!)

Once you realize what a joke everything is, being the Comedian is the only thing that makes sense.

Are you guys ready?  Okay, let's roll.
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #35 on: May 15, 2014, 08:26:01 pm »

I'm beginning to feel like a bit of a fraud here. Every time I see the consultant I seem to be doing much better - to the extent that last time I was told that there is now a very slim chance I may be curable (unimaginable a month ago!). So there's an element of (potential) survivor's guilt on coming to this thread. But I've managed to rationalise it to the fact that it's what we're all aiming for and if it can happen for me, then it can happen for any of us.

I'm in the last round of chemotherapy now and they've changed the chemicals as the previous ones have given me permanent tinnitus in my left ear. It may fade over the next few months or it may never go away - just one more unknown to deal with... Unfortunately it meant an upping of the anti-nausea steroids which have stopped me sleeping the last couple of nights and given me constant jitters. Hopefully that will wear off soon.

On a more cheering note, I went for preparations for radiotherapy yesterday. This consists of having a plastic sheet moulded over your head and shoulders and pinned to the table so that you can't move at all. Then they shine a laser up and down your central line for calibrating the later radioactive sources. But I suspect that the reason they cover your mouth with the mould first is so they don't have to hear every patient say "Do you expect me to talk?" and expect the response "No, Mr. Bond, I expect you to die." Cheesy

So, last month the toxins, this month the lasers, next month the radioactive death rays - not how I was expecting to be cured...
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #36 on: May 15, 2014, 09:47:45 pm »

Two things Sir Henry:

1) I've had the same struggle lately as I'm confronted with the idea that near as we can tell I'm not under any threat from my health right now. and as time goes by it looks more and more like I'm near as healthy as most other people with some minor digestive sensativity. No where near as life threatening as this all was just a month ago.

I keep coming back here and feeling like this seems like a massive overreaction on my part. But I have to keep reminding myself of the past seven years and those moments where the pain was so bad I blacked out, and all the struggles and the failures to cope along the way. It was real.

The positions of hope we find now do not detract from the fact of the experiences we had before now.

And along with survivors guilt about how I now feel like a fake because I'm now no longer so sure of oncoming death, there is also a sort of shattering of illusions that has set in. I find myself looking around at people lately and thinking "They are completely unaware of how fragile and impermanent they are." It's kind of shocking how we all seem so unconscious of the idea that we could stop existing in the blink of an eye, or even more terrifying, experience that process of ticking last moments that we can't do anything about.

We spend so much of our existence in that state of unaware and I forgot how to have that peace enough to enjoy the moments as they are here without worrying about not having more. How do they all do that? In some ways it feels like they should be taking it more seriously, because these moments won't come again and they shouldn't fritter them away on things that won't even be worth remembering. But at the same time they are going about the process of having a life and I'm struggling to not lose so much of mine to the fretting and worry about it.

2) I found this and it made me think that if the need comes you can't have enough hold out rayguns in your fight: http://www.sciencedaily.com/releases/2014/05/140508121251.htm


I think in the end I would like to have a balance between those who are unaware and my current state. I'd like to not be constantly worried about the fragility of my existence and the oncoming end whose speed and distance is unknown, but I'd also like to be conscious enough to live on purpose and not waste my life because I figure I've got another forty years at least to do things in.
Logged
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #37 on: May 15, 2014, 10:52:57 pm »

Thanks for that and I hope your demotion to 'digestively challenged' sticks for years to come, Jack.
2) I found this and it made me think that if the need comes you can't have enough hold out rayguns in your fight: http://www.sciencedaily.com/releases/2014/05/140508121251.htm
Thanks for this. The oncology clinic I'm going to is one of the leading ones in the country and the plan is to use between 3 and 5 tightly-focused beams (as described in that article), so hopefully if there is a recurrence at a later date there will be less fear of damaging already-weakened surrounding tissue.
One of my continuing hopes through all this has been to live long enough for the doctors to develop a cure. This seemed fanciful years ago, but now seems quite possible with the rate of new discoveries. Though sadly the dye and light technique won't work for me as the light won't penetrate far enough, even with endoscopes.

Quote
I think in the end I would like to have a balance between those who are unaware and my current state. I'd like to not be constantly worried about the fragility of my existence and the oncoming end whose speed and distance is unknown, but I'd also like to be conscious enough to live on purpose and not waste my life because I figure I've got another forty years at least to do things in.
If/When I go into remission I'm hoping to carry with me some of the realisation that came with the original diagnosis - that life is to be enjoyed rather than endured and worrying about an uncertain future helps neither the present nor the future. Having just moved into my dream house just before all this kicked off will help, I suspect, as I now have the confidence to start working on long-term plans for it.

It's that balance between enjoying the moment and looking forward to/planning many more such moments in the years to come.


But if the result of this thread (and/or Cornella's generous prayers) is that we all get better (or better yet cured) it will, at the very least, be enshrined in my personal museum of Truly Great Things.
We can do it chaps.
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #38 on: May 19, 2014, 05:53:29 am »

Xenos good to see the fight. I can't help but think that since the way it works for Malaria is that the treatments kill to active form and the dormant 'spore' like form is what causes the flairs, that there aught to be a way to kill the actives before they create dormants and then just kinda sniper them down. When some go active pick them off before they make replacements and just keep to that course until none remain. But what do I know about it all?

Oh and about the intimate issue, there are ways, Those days are not over. I've a friend who excitedly post the other day about how much she loves her new job for a company supplying materials and tools that among many other things allow people to make end runs around such barriers.

I've had a few rough nights lately where it amounts to minor issues compared to my early days seven years ago, but I've not enjoyed the experience. But thus far they just seem to be centered around careless eating. Eating too much, or eating something like fruits or spices will make me ill.

I feel like I'm back at the beginning again trying to learn everything from scratch.

But the first time I had a lot of anger and determination to help me through. Right now I'm in the midst of depression and a renewed awareness of how finite existence is.

I've no real worries about what the day after my last day will be like for me. And with some of my efforts of late less worry about what it will be like for those I care about. I think mostly these days it depresses me most to think about the wasted time and illusionary potential.

I'm only allowed so long to live and how much of that time is lost running errands? Doing chores? Working for somebody else to earn a paycheck suddenly feels like a monument to a wasted life.

The flip side of that are the amazing things I know I could if only... all those if only things seem like wonderful opportunities just out of reach right now but a bit further into the future I will be able to grasp them and enjoy them. But that's just the thing, I've not the time right now. I've got to earn a living, and wait for governments and laws to open a few of the doors between me and those opportunities, and wait for the cost of some of the tools, that would enable me to create my dreams, to come down. And after decades of this not any of those are any closer to being reached.

Seems an unkindness to have a world with a need, a person with the skills and desire, and the means to make it all come together... but only allow them the briefest of contact and then close everything up and dump the person with the skills in a crappy warehouse sweeping floors or chopping fifty pounds of onions Until they are old enough to barely remember those possabilities but not near fit enough to try most of them anymore. That is if they don't get into an argument with a bus fender at speed, or get ill before that day comes.

It just seems such a waste of such an amazing thing as people are. And as a people I feel as though an injustice has been done to me and all the rest of us trapped in the system of waste.
Logged
MWBailey
Rogue Ætherlord
*
United States United States


"This is the sort of thing no-one ever believes"

rtafStElmo
« Reply #39 on: June 02, 2014, 02:24:32 pm »

Just wanted to let you guys know I'm pulling for ya.  I know I've said it already, but it bears repeating.  Or is that bares?  I can't remember.  I'm medicated.

Rovingjack, you got this.  I know you do.  You'll be alright.  Sir Henry, I hope you can get into that test thingy with the light whatsits.

Remember, if all else fails, castle. Wink



Bare bears, perhaps. The right to bare and bear arms. bearwarned is forebared. Er, OK I'll shut up now.
Logged

Walk softly and carry a big banjo...

""quid statis aspicientes in infernum"
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #40 on: June 02, 2014, 03:37:16 pm »

It just seems such a waste of such an amazing thing as people are. And as a people I feel as though an injustice has been done to me and all the rest of us trapped in the system of waste.
This is resonating today.
For the last few months I've had support from all sorts of people, yourselves included, but there has been one person online who has been more concerned, informed and encouraging than any other. We first got to talking when we discovered we had a similar history of depression and fighting it off, but that was all eclipsed by the cancer diagnosis. His father went through a very similar process so he knows the effects and side effects of the drugs I've been on. He is the one I tell first whenever there was good news, even though this often means waiting 12 hours as he lives on the other side of the planet. Or rather 'lived' as I've just found out that he died a couple of days ago. And from what little I can find out about it, there is a suspicion that it was by his own hand.
Quote
It just seems such a waste of such an amazing thing as people are.
Logged
frances
Zeppelin Captain
*****
United Kingdom United Kingdom



« Reply #41 on: June 02, 2014, 09:29:48 pm »

Oh Sir Henry, that is a tough one.  I expect that you have both been supporting each other.  *hugs*
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #42 on: June 29, 2014, 11:36:57 pm »

sort of a meh! update. Odds are good I'm still doing well, but I'm also still undergoing testing regularly. Frustratingly it's not answering a bloody thing.

I did the dual scoping some time back and that came back with everything looking healthy-ish with just some diverticulosis. So no explaination as to why I've been so sick for seven years.

Then the barium swallow showed nothing unexpected other than slow transit time. So no explainations there.

My biome testing came back a week and a half ago, and while I've not had the chance to talk with my GI specialist (and won't for about a month yet) mostly it's just minor irregularities that could be explained via dietary, or recent exposure to antibiotics. Mostly looks normal with one group rather lower than average but no indications it should be anything but ordinary varience in populations.

Did a hydrogen breath test earlier this week, and made sure they accounted for slow transit time. Results come back as normal (which I jokingly refer to as a grave insult to my character). This means that whatever bacteria I do have are at least functioning as expected.

The only thing out of sorts lately has been a blood test in this past week that came back low b12, and low white blood cell counts. Neither are overly applicable to my digestive issues for the better part of a decade especially when you consider two months ago they cam back as normal while my folate was low, which is normal now. and all three where fine a couple years ago while my vitamin D was low which is fine now.

I have however had another bout of lung issues. Not sure if it's food related, environmental allergies, or something else. and my blood pressures been a bit odd at times. causing risk of fainting a few times from low levels, while at least once spiking after a meal.

I have had three or four episodes of severe digestive sickness like some of my worst days back when we 'knew' it was crohn's in full flare. but at least it seems the return from those brings me back to a better place than I have been prior to this whole mess.

So I'm frustrated with no answers, a bit anxious about having mysterious health problems doing goodness knows what to the only body I have and still restricting my capabilities. When I could say it was crohn's, there was a problem of people saying things like "you don't look sick." and now this is compounded by medical testing that says I don't look sick either. Only I am. Normal healthy bodies don't do what mine has been doing to me and continues to do on occasion.

Most days I go about with life in that transitional state of surviving while trying to determine if I am healthy enough to do more than just that. But it seems like whenever I start to think further down the road than a month or two that I get a reminder weekend that something is still not quite right.
Logged
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #43 on: June 30, 2014, 12:02:16 am »

I can sympathise, rovingjack. The worst aspect of all of this is the uncertainty. In my case it was mostly 'we have no idea how long you'll live', 'we have no idea how well this treatment will work' and 'we have no idea what side effects you'll suffer'. But to have replaced a diagnosis with 'we have no idea if you're even ill' and the concomitant implication (hopefully unspoken) that it's only in your head - that's a real nightmare.

Hopefully it won't take them too long to run out of things it's not and for them to find out what it actually is.

Until then, stay strong.


p.s. I am now a virtual imposter in this thread, having been diagnosed as virtually Ned (no evidence detected  Shocked Grin). Though they won't be able to confirm this in a scan until around Christmas because of the damage done by the radiotherapy.

p.p.s. update on my friend's death - it was not self-inflicted but an accidental head injury. This has made me feel a tiny bit better about it, but only microscopically.
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #44 on: June 30, 2014, 02:07:44 am »


p.s. I am now a virtual imposter in this thread, having been diagnosed as virtually Ned (no evidence detected  Shocked Grin). Though they won't be able to confirm this in a scan until around Christmas because of the damage done by the radiotherapy.

p.p.s. update on my friend's death - it was not self-inflicted but an accidental head injury. This has made me feel a tiny bit better about it, but only microscopically.

1) I know the feeling there. I feel sort of foolish posting in a thread about trying to beat death when there is little evidence that death is a real risk anymore (knock on wood) but I have to tell myself that feeling foolish is nonsense. I was in fact starving for a few weeks, and had something not changed I'd still be doing so. On top of that the original cause of both the restricted diet and the loss of things on it from the safe list is unknown and thus can neither be predicted as gone nor known how to resolve or prevent from reimmerging or getting worse.

Likewise you were not pretending at all, you just won the game you were playing. And may it be so for a good time still before the next game needs playing.

But as both a winner in that and a former player, your experience of it is most welcome. And just because you won doesn't mean it won't leave you with some recovery, both physical or emotional. That too is part of the process and seeing others do it can help readers not yet there, or even not yet facing their own game, prepare themselves for the process.

I know that I for one, haven't the slightest idea of how to transition toward a person with an average lifespan ahead and reasonable health to look forward to even should I get to that point in the next six months. In it's own way it's as disruptive to my sense of self as becoming ill was, it changes how I related to the world and the people in my life. I don't know how to be that person yet. You may not be able to give me answers to that but knowing that others can do it and are doing it makes me a bit more sure I come through it alright and have a sense of myself again.

2) I'm sorry about your friend. It's completely understandable to feel eased by the thought that it's not for want of help they are gone, or that they didn't see their friends and family as worth working through it for. Knowing that it wasn't a choice, and the question that would leave is good to have, and I should think you should not have any worry or guilt for that relief. Knowing your friend did not give up on himself or you and the rest of his family and friends speaks to his strength and it's nothing to feel at all bad about being proud of your friend having that strength of character.

(however I will also say that in cases where people do take their lives, does not imply weak character or failure in the person or their support network).
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #45 on: July 12, 2014, 01:31:45 am »

 Angry

On the 5th Had to go in for a second round of blood tests. Then I was waiting for a confirmation of an appointment coming up. Eventually called up to confirm... they hadn't scheduled it so asked how I felt about october...

I got in on a cancelation. consulted with them about some of the concerns and they casually mentioned my blood test come back with signs of elevated homocystine and enlarged red blood cells. These are not inconsistent with folate and b12 issues which showed up in the last two tests but are not obvious now. So NOt sure what to think about those results. I also had a test for lyme and one for lead tox done and they tell me they came back negative.

It was a bit of a relief to hear that. Theres a chance they might be un aware of elevated level but the indication is that the result are not in a range where a note should be made to worry about it or examine further.

It takes two more days for my online files to get those results... and the lead tests are nowhere in there. I'm going to be sorely pissed if they never actually tested it, and am already a bit annoyed that I was given false reasurances, even if it was by mistake.

It's possible that test may simply take a bit longer to come in. Which, if I am being honest, is stupid. You would think that a test to find out if somebodies home or job is poisoning them might be a test which should take less than half a month to run and get the results back from.  Roll Eyes

but honestly I'm not feeling any less healthy than I was five days ago. so, I guess I'm just stuck waiting again, only slightly more pissed off for having been jerked around and having my anxieties calmed and then pumped up again by paperwork bs.

sigh. It was really nice for a while to think that I might be a bit more secure and have more time to find a new place to live and a new job, because the one I'm in wasn't an imediate threat to my health. Now we are back in the space of not knowing. So home and health feel a bit less secure today, and I dare not complain too much because I know that not knowing your okay might be stressful, but it's better than knowing you are not.
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #46 on: August 27, 2014, 12:41:22 am »

whoops, coming in a coupla days late here. But I do still want to keep up on this.

Still have some blood level issues of unknown origin, has me a bit worried, but I'm going to keep doing things as I'm mostly symptom free (I still get blood pressure crashes from time to time). Had a miner gout flair but recovered in time for work. Some panic attacks and depression from time to time. But on the whole I'd say I'm settled enough to get on with life.

Still don't know what to make of the crohn's issue. All signs still suggest it was the best diagnosis, but that stuff just don't disappear from scope detection like this. I still get symptoms if I push outside some safety zones. If I eat too much, too cold, or over stress my body I ruin the next day.
Spoiler (click to show/hide)

just read an article about some gut microbiome flora that studies now suggest may protect against allergies developing to foods... and that antibiotic was taken about a month before I started having allergy like reactions to some of my safe foods.  Lips sealed ing antibiotic!

still not sure I can tolerate fruits or sugars, but I seem to now be able to manage some grains again. Hopefully it lasts. I'm acutely aware that if I find myself back to where I was in april only this time without the ability to eat honey, I will be in rough shape a month and a half later. and the honey and turkey were primary caloric intake points and without them or grains I'd be in deep.

I hope to start taking some supplements that may help my body with the cleanup of the after effects of the antibiotic that cling on to me. And may try a supplement for blood work issues. Those too may be caused in part by the antibiotic, based on anecdotal evidence by others that have been floxxed by this class of drug. But it may also be indicative of something else more serious.

Failing any major set backs I may not post updates much here though I think it may be interesting to post again in eight years. Hope to see Sir Henry and Xenos on that date posting.

and as always others are welcome to take up the there own games against death here and seek support from each other and us.

ps. need to remember to look into some of the ideas about after life procedures I came up with in here. The time frame may be different now, but the ideas still have merit.
Logged
Sir Henry
Zeppelin Captain
*****
United Kingdom United Kingdom


Poking the i's and drinking the t's


« Reply #47 on: August 27, 2014, 08:00:36 am »

Ah yes, antibiotics wiping out gut flora...  Angry Angry Angry
My daughter was given antibiotics when still too young for them (less than 2) and had an allergic reaction. Eighteen years on and she still has food allergy and digestive problems that cause her pain most weeks.
And the reason why I lost over 3 stone in under a fortnight before they discovered the cancer? You guessed it - an allergic reaction to antibiotics. Sad
I've been one of those people who has been pushing for less use of antibiotics (in order to maintain their effectiveness) for over 30 years, so it's good to see that the medical profession is finally starting to look for alternatives. But I'm not really amused at the irony of discovering after all this time that the real reason to push for less use is that I'm allergic to most of the things.

rovingjack - if at any point you find out a way to reintroduce gut flora that have been burned out of you by antibiotics, please let us know. My daughter would be grateful. And if I find anything I'll let you know. Best of luck.

Anyway I should be back here in a couple of months (well before the eight years) with the results of my final scan, oping that it hasn't spread again as fast as it disappeared. Fingers crossed.
Logged
J. Wilhelm
╬ Admiral und Luftschiffengel ╬
Moderator
Immortal
*
United States United States


Sentisne fortunatum punkus? Veni. Diem meum comple


WWW
« Reply #48 on: August 27, 2014, 08:29:38 am »

Ah yes, antibiotics wiping out gut flora...  Angry Angry Angry
My daughter was given antibiotics when still too young for them (less than 2) and had an allergic reaction. Eighteen years on and she still has food allergy and digestive problems that cause her pain most weeks.
And the reason why I lost over 3 stone in under a fortnight before they discovered the cancer? You guessed it - an allergic reaction to antibiotics. Sad
I've been one of those people who has been pushing for less use of antibiotics (in order to maintain their effectiveness) for over 30 years, so it's good to see that the medical profession is finally starting to look for alternatives. But I'm not really amused at the irony of discovering after all this time that the real reason to push for less use is that I'm allergic to most of the things.

rovingjack - if at any point you find out a way to reintroduce gut flora that have been burned out of you by antibiotics, please let us know. My daughter would be grateful. And if I find anything I'll let you know. Best of luck.

Anyway I should be back here in a couple of months (well before the eight years) with the results of my final scan, oping that it hasn't spread again as fast as it disappeared. Fingers crossed.


Which part of the gut are we talking about? There is a controversial method for the lower intestine.... It's really disgusting but doctors claim is very effective:
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
Logged
rovingjack
Zeppelin Admiral
******
United States United States



WWW
« Reply #49 on: August 27, 2014, 06:20:07 pm »

for the most part a persons microbiome will try to repopulate itself (some suggest that's the real function of the appendix, a bomb shelter for gut flora) but the process may be unbalanced and rough.

I used Ubiome to test my levels, and I'll likely run another set of tests to see if changes are still progressing. The group mentioned in the article I read about allergies and gut flora, I have at low end of normal levels (the sample used were more than six weeks post Atibiotics though which may have been time enough for rebound. But I also have a near complete abscence of another group.

Ways in changing a persons levels would be good quality multi probiotics (they should require refrigeration, and the should make mention of colony forming units), dietary changes can do it too, as you are essentially feeding some populations and starving others you can change the balance. We also naturally exchange bits of our microbiome with the people we live regularly and the countries and towns we inhabit. (sort of like how travelers sometimes get digestive problems).

More agressive tactics include consumption of colostrum (usually bovine, but I suppose human might be possible if not the weirdest question anybody has ever asked on craigslist) and as J.W. mentioned fecal enema (there are tutorials for do it yourself online).

I did a lot of looking around at such things over the last seven years. Mostly one has to keep in mind that anything you do will likely take time to establish the change in state, and in all likelyhood  existing allergies and intolerances won't go away, but it may hel prevent new ones.

as to getting rid of old allergies, they are working on that too. There is one approach they've been working on that essentially attaches parts of the allergen to white blood cells in a way that the white blood cells signal to the rest of the immune system 'it's okay they are with me.' and soon the immune system gets used to seeing them and stops reacting. I think coupled with rebalancing the microbiome it has a good chance of reversing dangerous allergic reactions.
Logged
Pages: 1 [2] 3 4 5 6 7 8 9   Go Up
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.20 | SMF © 2013, Simple Machines Valid XHTML 1.0! Valid CSS!
Page created in 0.248 seconds with 17 queries.