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Old 09-15-2014, 02:06 PM
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I guess to me the hope is that stuff like genetic therapy will find broad based solutions that are applicable to a wide range of conditions. Til then I guess we just have what we have. Hopefully though the current flare up will ease soon.
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Old 09-17-2014, 03:38 PM
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Originally Posted by MythOfSisyphus View Post
I guess to me the hope is that stuff like genetic therapy will find broad based solutions that are applicable to a wide range of conditions. Til then I guess we just have what we have. Hopefully though the current flare up will ease soon.
I'm right there with you, beleive me I read every journal I can for any hint of a study that may help. I've hit on a few studies which sounded good, only to find they had been poorly researched and the scientists involved were embarrassed so I try and be very realistic about things now.

Sadly these flares seem to set a new level. Imagine it like a computer game, you can go as slow as you like but eventually a new level starts, you get used to it but that's the level you are now at. The same applies to my condition. A flare up may be a big change, but it becomes the norm. Pain has now spread to most joints I may far worse than usual, my hands are badly affected, any use, wheather it's typing or making tea end up with them feeling very warm and painful. I was hoping I had at least 5 more years before this. The next stage would be the pain migrating to my skin in patches and sadly at least on my forearms that's already started. On the upside the various cysts don't seem as bad. God knows how a condition can be so stupidly random.

I'm sober and I intend to stay that way, but in 30 years who knows how this condition will progress and the effects it will have. I hope I have yo ulot around for all that.

Lol sorry I've rambled a bit, just needed to share my feelings right now. Nearly 12 at night so I better try and sleep. You take care of yourselves.
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Old 09-18-2014, 03:13 AM
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Well, with luck there will be some breakthrough treatment within those next 30 years. I guess like sobriety, you just have to go one day at a time. Hopefully a good many of us will still be hanging in there with you! Although I'm already 45 years old so I can't make any promises for 30 years from now!
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Old 09-19-2014, 01:31 PM
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Originally Posted by MythOfSisyphus View Post
Well, with luck there will be some breakthrough treatment within those next 30 years. I guess like sobriety, you just have to go one day at a time. Hopefully a good many of us will still be hanging in there with you! Although I'm already 45 years old so I can't make any promises for 30 years from now!
Hey you keep yourself in good condition and 30 years should be easy. Remember medical science is progressing and regenerative medicine is on a number of frontiers that could retard the aging process, growing organs will be common in the next 20 years or so, artificial blood is on the horizon, artificial spleens are so close it's incredible. Lol sorry if that sounds silly but I have a degree in biology and I read a lot of journals. Truth is if we take care then our lives could be prolonged well beyond 100, and of course the more time that goes by the more we can be fixed.

I'm sure in my time the illness I have will be addressed, eventually, it gives me hope anyway to think one day it'll be cured

Maybe one day I'll get to live my dream of seeing the world and maybe, possibly moving to either Canada or the USA, some remote place with lots of trees where I can think, indulge my hobbies and live quietly. Ahh well it's good to dream
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Old 09-20-2014, 12:17 AM
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Hey, dreams are good! They keep us alive, give us a reason to live. No reason to think you won't do it one day.

I am trying really hard to get/stay healthy. I really need to get a primary care physician...it's embarrassing to admit how long it's been since I've been to a doctor! Like most American males I only go when something acute gets so bad I can't bear it. But no more! Under the new ACA in the US my health insurance has gone up a bit to $180/mo but my insurance is vastly better than the crap policy I used to get for $125. It now covers lots of stuff. So I gotta use it since I'm paying $2k/year for it.

The working out has been going well. In fact, I just finished lifting a few minutes ago. I built up a new stereo system for my home gym area to help get me pumped up and motivated. Got my cheapo little MP3 player and a 32 GB SD card full of upbeat pop and hard rock, stuff to fire me up while I lift. I've built up my strength quite a bit in the however-many-months I've been at it. But I'm going to have to get a few more pieces of gear eventually. A squat rack would be awesome; I have room for one, and I might be able to find a used one. In any event it would be cheaper than a gym membership and I'm more apt to use it since it's in my basement, not across town.

The idea of living to be a hundred is appealing to me, but only if I could do so in a body that is still capable of doing stuff. Being robust to 50, then sitting in a nursing home for another 50...well, that doesn't sound good at all! If I can still get out and hike, work out, etc then I'm down for a couple centuries it science can work it out!

I hope your symptoms begin to ebb soon, even if the break isn't permanent. We'll be here keepin' the thread warm for you!
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Old 09-20-2014, 07:58 AM
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Oh the days of 2k /yr out of pocket for private company funded health "insurance". My family plan requires a weekly employee contribution of ~$250 . It's a "decent" plan ,but the deductibles were lower and the amount of DME coverage was higher years ago when it was half that , out of pocket . Having a hard getting excited about ACA, I vote for pre ww2days, catastrophic coverage only, and fee for service! Even leviathans die, but pretty sure this will out last me, just hope my kids may someday be "out from under it".
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Old 09-20-2014, 11:20 PM
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The ACA is no panacea but it's been an improvement in my case. I hesitate to say much more since this is somewhat political but I hope the ACA is just the prelude to a single payer system to come. As it is it's a love letter to the insurance industry. There are some great things, such as the requirement that 85% of premiums actually go to care and the ban on barring companies from refusing coverage for preexisting conditions.
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Old 09-21-2014, 05:03 AM
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It's prelude and be careful what you wish for.
And you're right it is political, but not in the D vs R partisan sense, more in the Articles of Confederation vs Weimar Republic sense.
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Old 09-21-2014, 05:20 AM
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I do need to apologize for not being 'able' to shut up sometimes.

DaveyT sorry for intruding on your thread, I hope today(and all days) finds you if not well at least tending toward better.
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Old 09-26-2014, 01:02 PM
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Originally Posted by dwtbd View Post
I do need to apologize for not being 'able' to shut up sometimes.

DaveyT sorry for intruding on your thread, I hope today(and all days) finds you if not well at least tending toward better.
I've been reading this with interest so please feel free to continue, I have a reply in mind but don't really have the energy to type it all out right now.
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Old 09-28-2014, 06:03 PM
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Stopping in to say hi, Davey. Now that autumn is here hopefully I'll be around more...not that I did a darn thing worth remembering this spring and summer.
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Old 10-04-2014, 08:39 AM
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Originally Posted by Received View Post
Stopping in to say hi, Davey. Now that autumn is here hopefully I'll be around more...not that I did a darn thing worth remembering this spring and summer.
I'm sorry you feel unfufilled by your year so far, it's nice you checked in and are still around. I'm still a bit up and down with my health but today, actually the last few weeks my legs have been so painful I want to cut the damn things off. It's like someone dumped sand in my joints and shortened all the muscles. The pain nearly always seems to be the worst in my legs, others get it in the arms or back etc. I suppose at least I get to use my arms normally
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Old 10-04-2014, 09:52 AM
  # 173 (permalink)  
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I couldn't edit my post so adding one on. My pain meds are currently being used at the maximum and despite that I'm hurting all over. I refuse to increase dose as I'm already paranoid about gaining another addiction. So I'm just having to endure things at the moment. I'm having a lot of hot showers as that tends to relax the muscles. I was having massages but that doesn't work right now as pushing on the muscles is just too painful.

I must admit I'm just gettign tired of this illness, it's only going to get worse and I find myself wonderign why I should bother with any of it. Sorry if this seems like a depressing comment. It's just every day I wake up in pain, I go to sleep in pain, I wake half way throught he night in pain. I get periods which aren't so bad but this one has lasted far longer than usual.

I just want a bit of a break from feeling so bad. You know I was stabbed once and I can tell you the pain from that was nothing compared to now. Imagine a knife all over and you're approaching what I feel daily.
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Old 10-04-2014, 02:18 PM
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That just stinks, Davey. I'm so sorry you're going through such a time of it.

I know I have no right to complain on your thread yet at the same time it feels safe to vent here.

Wish there was something that could be done to make things better for you.
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Old 10-04-2014, 10:36 PM
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Yeah, that does suck. I wish there was something to be done. May it finally subside a bit soon!
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Old 10-06-2014, 01:36 PM
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That just stinks, Davey. I'm so sorry you're going through such a time of it.

I know I have no right to complain on your thread yet at the same time it feels safe to vent here.

Wish there was something that could be done to make things better for you.

Mate you vent all you like, I know sometimes maybe it seems like you can't complain because my life is, at least according to me, so much worse. I have learned that it's all relative. You get idiot spoiled kids who think they'r4e hard done by because they didn't get the new iphone, it's all relative. To them it seems awful, to most of us it seems pathetic. Don't feel like you can't share, go for it, you know I'm not going to have a go at you.

I understand as I started this thread it's supposed to be mine in a certain way but I just don't feel like that. You share whatever you want to share, ultimately you help yourself and others with your honesty. I was a little worried when you said you felt your year so far was wasted so I'm happy to hear your story.

Take care of yourself and remember everyone here is behind you. Even me with all my problems, I'm right here to try and help
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Old 10-22-2014, 02:23 PM
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Sorry for this update.

I'm tired guys, sober but tired. I'm not sure of my future, constant pain, extreme exhaustion, swelling caused by the growths I have in my muscles causing disfunction. I'm just wondering why the **** I should bother. Forgive me guys it's jsut hard to think what I can offer this world as I am. Existing provides no benefit to humanity, living does, and it's that second one I'm struggling with.

I wish I could have some positive effect on the world, no matter how small that would make things worthwhile you know? If I could offer just some small benefit to someone then I'd be ok. I would love to do some charity stuff but I don't even have energy for that!

Sorry guys if this seems a bit depressing, just not sure where to fit in at the moment.
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Old 10-22-2014, 04:58 PM
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I'm so sorry you're feeling so, so down. Let it all out here if you want to Davey but if you feel like you are going to harm yourself then please call your local emergency number. Please.

Are you seeing any type of therapist/counselor?
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Old 10-22-2014, 07:27 PM
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Please check in as soon as you can, Davey.
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Old 10-22-2014, 10:52 PM
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Missed your update til now, Davey. It sucks that your condition has been so exasperating. But try to keep your chin up. You may not know or really believe it but you help a lot of people here at SR. Don't sell yourself short. Most of us have periods where it seems like we're just taking up space but that doesn't last. I know this is a secular forum and none of us are religious, but I don't think that precludes being spiritual. There is no grand plan perhaps, but all of us a play a role in this grand play unfolding every day. Perhaps your role has yet to be revealed.
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