|
This is not gonna be a fun one with picturee, sorry.
So here I am lying in hospital, after an MRI scan and spinal tap, waiting for final results and receiving preliminary treatment with the main goal of making a record for the insurance company so that i will be eligible for the actual medicine later. I made the mistake of reading english materials about treatment online only to find out how that may not apply to me due to being born in a forgotten backwater.
My life is essentially gone in the blink of an eye. It will be dpoctors and needles from now on, my love for freedom will disappear under schedules and planning. Eventually, I will stop walking and slowly die.
Sure, its still not final but everyone acts as if it were, so my hopes arent very high. Some confused vision problems, some tingling in fingers and suddenly I went from "here is to another great 35 years" to "maybe i will have something good in life once in a while."
Go outside and live while you can. If not for you, do it for me.
|
Don't really know what to say man...
I feel sorry for you, truly sorry. Is there any possible way of recovering from sclerosis ? Hopefully you'll get better, at least so that you can wander again freely a little more.
Keep fighting man, keep your spirit strong, that's the only thing that count.
GL man
|
there is no cure. some 15 people afaik have recovered using a borderline insane treatment, but one guy died in that study.as a direct result of the insanity of the method. other than that it is basically just hoping for the best.
|
I will do it for both of us.
There is nothing I can say or do that can help you. Stay strong, for as long as you can.
|
...
And here I was thinking (again) about how messed up my life is. And all I've got is depression and being antisocial. I've had much more going for me in life than most people, but I've never known what I've wanted... and never really felt happy...but this is not about me.
I have enjoyed your blogs, I really have. "Not everything wants to kill you in Australia" was the first one I read, and after that I read a few of the older entries. I like to read blogs on TL, lots of unexpected and interesting entries.
And I might as well try to give my own life another try... I've felt like not living for way too long. Today it is time to finish some work that I have been delaying for way too long.
I was trying to numb myself with beer tonight, I came on TL and read this... and it hit me like a hammer.
Stay strong!
|
:/
Life is what it is ...
i just saw/read you posting in the custom forum and i knew something was up .. or at least .. my brain missed a beat or something .. and now that i read your "news" i'm sad...
Now i am faced with a choice, to cuddle you or not :/
There are people who live with ms and manage to do stuff with the help of other people for years/decade, your life is not over.. but yes it will have to be on the illness' terms and a lot will be awful and like an addict trying to reclaim his life you will go through "steps" all hard and all seemingly more and more unfair for all this time.
But that does not mean it won't be worth it.. every day we have is a gift and you have to hold on tight. ms is one of the most researched illness in the world and like aids that was once incurable for everyone .. medicine has now "saved" many, so don't lose hope on that front!
Maybe you will still climb your mount everest .. just .. that might not be a mount at all.. it will be to still work, to still walk and talk and live .. and ultimately surviving this <3
+ Show Spoiler [cuddleless] +You sort of know me  i don't cuddle needlessly, in this case there is an extra reason for it :/ so here i go: the most insidious part of degenerative illnesses is that people will start to pity you.. (knowing you a little bit in return) i think you will particularly hate that.. to never again be "normal".. to never again be anything else than a sick guy .. fight this (do not shun people away) fight this from within and from without (go full sayan meditation and budda,(or whatever) it will make a huge difference) and win.. don't reject people showing you that pity, don't accept it either, just accept the illness and make yourself another life where that is something you have to deal with smartly .. if you feel this life you had is over you won't manage.
Now is the time for you to discover the world within you 
as SkrollK said .. your spirit will make the difference.. i trust you to make the most of all you have
and do cast my vote for : + Show Spoiler +
i'd add .. love is life
but you are possibly not there yet.. soon though, i trust you!
+ Show Spoiler [cuddly] +if/when you get off the rails crazy, think of what i would tell you and hit me on skype, i'll show you the way back, promise!
|
guys, thanks for you words.
fluidrone, you are the wisest weird person i have ever talked to. i think some of your post look like random noise to me just because they were never realky meant for me - because this one is for me and it speaks very clearly.
|
I cannot say anything personal, and I don't have words of wisdom or good advice, but I want to write here anyway to send you all my warmest feelings and and strong strong hug - I am mostly a lurker on TL but I read many of your posts and always enjoyed them. This post is just to try to send you a bit of support, even if online, through a forum, and from someone you don't know - all my love to you.
|
I read this and it felt so unreal, so unfair to me. First i didn't want to post anything because i was and still am scared to choose the wrong words. But that would be the easy way and you deserve better than that. I don't know you very well, we only ever interacted on TL, mostly talking about silly things like starcraft. Still, i appreciated our interactions quite a lot no matter how unimportant they actually were. I am sure there are countless other guys who feel the same way here on TL alone.
I don't have any experience with illnesses like that so i won't pretend to know but i really hope you can find strength and happiness somehow even though it probably looks very bleak now. There is always a reason to keep on trying, keep on living.
Wish you the very best
|
I haven't really been living for the past 5 years, this more than anything definitely helps me realize I should do something about that. Stay strong, stranger. Who knows the wonders of science might sneak up on you out of the blue. <3
|
thanks for your support. special love to viper of course, you are a great part of this place
|
Dude, you're not going anywhere. Don't forget your responsibilities as a shitposter.
I've spent a good part of last 6 years in TL browsing and sometimes even posting. There can be only one Opisska.
All the best
|
Damn, I should really go climb that hill tomorrow. I say hill, but it's actually marked as a "knob" on the map.
I'd usually say get well soon, but yeah, get worse later I suppose.
|
Shit. I remember you from that post about your cool Astrophysics work. I also saw you visit a teamliquid member in Australia (?) and had a good time. For the rest, I saw your name pop up every where. Even if I don't know you in real life, I hope for the best.
Maybe you'll have some luck? MS is rarely fatal and not always physically debilitating. You could still live for another 40 years without ever needing crutches or a wheel chair.
Good luck...
|
Welp, not the best news indeed. I didn't see your blog until now, now I get what you meant by the hole in your spine... MS can go from bad to worse, and you sound like the second half :/
I sincerely wish you all the best in any case.
If you have the opportunity, let us taste the lemonade you'll made with all this!
Take it as you will, but I'd be happy to be able to do something. As an almost complete stranger, maybe I could help you in way closer people can't, be it for things as simple as uninterested chit-chat or whatever.
Keep up the good fight.
|
I got an appointment in a specialized MS center in two weeks. my neurologist has the doctor in very high regard and talked me through some things, so i am a little bit more optimistic. But its gonna be hard anyway. Ill keep you posted, the ability to type should last quite long
|
My grandmother had a disease which was a lot like MS. Basically she had no feeling at the end of her nerves. Once in a while she'd get these surveys to ask what she would think of her life (since a lot of elderly are depressed). SHe still rated her life with a 7 (on a scale of 1-10) even though she was also suffering of COPD and lung cancer. What I'm trying to say is that even though what you're going through is terrible it's still possible to enjoy your life.
Good luck friend and all the best.
|
United States996 Posts
sister-in-law has ms. shes stayed largely healthy since her diagnosis a decade back and still lives a normal life. keep your friends and family close. best of luck.
|
Very sorry to hear that 
Wife has a lupus so I know how painful life can be with these fucking autoimmune diseases.
A very healthy diet and sleep patterns as well as medical marijuana have been very helpful.
Good luck and stay strong!
|
Seeker
Where dat snitch at?36948 Posts
Sorry to hear that. Wishing all the best for you. TL will always be here to support you. Stay strong!
|
Reading all your travel blogs makes this extra painful, because you are clearly a person who has a yen for never standing still. I don't know how delusional this sounds, but don't let this stop your zest for life. I hope your travel blogs keep coming.
|
On February 09 2017 21:39 Liquid`Zephyr wrote:
sister-in-law has ms. shes stayed largely healthy since her diagnosis a decade back and still lives a normal life. keep your friends and family close. best of luck.
My cousin has MS. She has been fine for most of the last 10 years or so. Had 2 kids, and devoted her life to doing the things she loves. MS is a bitch, and learning to deal with the unexected will be tough, but don't give up on things!
|
+ Show Spoiler [anonymous quote] +On February 10 2017 02:04 endy wrote:Very sorry to hear that Wife has a lupus so I know how painful life can be with these fucking autoimmune diseases. A very healthy diet and sleep patterns as well as medical marijuana have been very helpful. Good luck and stay strong!
i'm waiting for the other shoe to drop :/
i posted this as a "just in case" + Show Spoiler +just in case i get banned from posting on tl for unrelated business
i'm waiting for the other shoe to drop
In this proverbial context, ^ this expression in english means (+ Show Spoiler +and this is my biased use of the word, i could careless about how other people might use it in their context
" that was some bad f cken news.. so what's next?, worse news? or life goes on news?"...
You posted here. So what's next?
..........> a "Lost in ms" thread?
..........> a "my wife saved me and it is high time i made her an honest woman" thread + Show Spoiler +?
..........> an "inside Opisska the live experience" stream?
As for me, i don't cuddle:
Stay + Show Spoiler +with us Stay alert .. stay strong .. remember to watch that movie innerspace (or like i would prefer calling it: inside me) > http://www.imdb.com/title/tt0093260/ where dennis quaid is in a spaceship inside martin short's body while he is awake.. or watch memento paying close attention to the "sammy jenkins" part of it, re-cutting yourself while playing it for it to make (the most) sense to you.. and then + Show Spoiler +make up and type in a text document your own "sammy jenkins" story (speech to text apps online are easy to use <3 ) a text/story that you will learn/tell yourself over and over in your head.. reshaping it at will (on a whim) nervously/anxiously awaiting further news as the years go by quicker and quicker each year/second. i humbly suggest it starts something £.. something .. like: + Show Spoiler +
i love the smell of the sun on a mountain peek, i love the wind fueling me .. i am alive
but do write your own  continue to write, to communicate to other human beings (whoever they are, whatever the form of communication , never* stop! )..
even when the typoes you will make will in turn make your lines unreadable.. i'll try my best to decipher.. translate and you'll check and send an "ok or a no.. and ill get back to re translating if that is a no until you say ok and that will mean i heard you.. you were understood
...
there is a cell we live in every day.. our body, it can be a golden palace of a cell, a cell made of iron bars or of leaves and dust, always a house of cards for everyone in every case, and it is all up to you what you want to do with it!
When those days come, when you want nothing to do with the world "anymore" (more like "temporarily").. there will be some of those harder than ever days! ... Get someone to save you.. you are entitled to ask every human being to save you once or twice maybe even three times..
those bad feelings will become fewer and fewer, just remember that all degenerative deceases are waiting for you to cut that line, then their mission is done, that is their purpose, to cut the line of communication
, don't allow them this satisfaction, never!
if you can't see yourself in someone else, you will leave us, and never come back!
i saw both my grandmothers do it to themselves/their husbands/kids.. there are neater ways to go believe me!
In any case, make the most of what you are given in life
and i
hope to see you on the other side man, when we both have had our allotted hopefully very long long long and fruitful run, until then, i'm a closeted 
Edit:On February 12 2017 01:41 opisska wrote: "how you get treated depends on which doctor you hit and which country you live in - but it really doesn't make that much difference, because if you had to chose, you couldn't, because data is lacking."
Agreed!
|
I have a friend who also has this shitty diagnosis.
He quit smoking, doesn't drink much and exercises more regularly.
So far he is doing really good and doesn't seem to be affected by it that much.
Hopefully it goes well for you too.
GL
|
I wonder if it was better or worse back then without internet, when you'd hear "you have MS" and have absolutely zero idea what is happening. I am pretty aware how much nonsense there is online, but I am also at least a little experienced in looking up information (I am pretending to be a scientist for fuck sake), so I did that. Apparently, there are a couple of tens of percent of chance that a single MS-like incident, which is called CIS, clinically isolated syndrome, stays exactly that, isolated. I have essentially all the good signs to that so far, apart of my stupid male sex - I had sensory symptoms, not motor impairment, my MRI shows only one serious damage etc... There just still is hope that it will never happen again.
The internet also brings terrible things, where you can read about all the bad things that can happen to you and also about the fact that science isn't really that clear about the whole thing, so essentially how you get treated depends on which doctor you hit and which country you live in - but it really doesn't make that much difference, because if you had to chose, you couldn't, because data is lacking.
And it also brings one more good thing and that is people to talk to. I know it sounds like a cliche, but every positive response in this thread has made my life better.
|
In case anyone is remotely interested in updates, I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon.
I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose.
|
On February 22 2017 03:16 opisska wrote:In case anyone is remotely interested + Show Spoiler + in updates,I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon.
I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger + Show Spoiler +with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose.
We are interested!
+ Show Spoiler +that's step 3! + Show Spoiler +Anger to change it? make it more fair? Or just anger? Welcome to step 4
A lottery? mmm yes.. i guess.
+ Show Spoiler [more] +If i try to "balance" rationalize it in my head (is the lottery fair or unfair in your case?) .. then i think you will agree that (as you said yourself) .. you have the best of everything already (maybe we all need to be shown just how great that initial lottery ticket is? instead of apathetically waiting throughout our lives tirelessly for something else to "happen"). i do another version of that, i expect everything i have built to crumble and shatter... For so long have i been doing this that i am "comforted" by this never ending flow.. all this wonder and awesome available that can flow through me towards the "other" ( + Show Spoiler +the "not me" (everything and everyone that is not me) ) all of this is bound to be fake unfounded and be smashed like sand castles connected by a legion of bridges... My grandfather used to sum up things miraculously well, for instance (as applicable to this issue) he used to say: "life is not complicated, you get served your allotted share and you fight for more.. but then nothing should lead you to excess, everything should be experienced/done in proper measure.. never get habits, never get those or they will kill you" (ps: the only "habit" my grandpa could never kick was his wife, he died a year after her, at that point he couldn't care less about the rest of the world because she wasn't there with him). i've always figured life to be on a timer. i don't know how much time i got, i don't "make the most of it" every day/second.. i guess i'm trying but certainly not trying my "best". What i do know for sure is that i do want to face that fact.. face it like i am not afraid of it. i therefore made decisions / choices.. and it never bothered me anymore.. not one bit. If i had to wager, i'll probably die by talking to someone (trigger them with my big mouth) and end up a hit and run victim or just have a giant piano fall down on my head from the third floor like in a tex avery cartoon <3 i don't mind, i know it is coming (come to think of it .. i'll probably be in a straitjacket by then ) i don't do stuff lightly either ..on the contrary! And funnily enough it is starting to sound like a medical regiment/treatment (all those things to do every day relentlessly) .. you see? i am building from scratch my studio/pocket theater 20 meters away from my house, right now i'm cutting trees and digging roots out (sometimes carrying trees that should survive from one hole to the next) .. this to allow me to dig/make the foundations (also so i can "hide" a bit of the overall height) .. so i do the woo peng magic process.. i do the matrix thing! i put on music that will focus me .. i suit up .. i use ALWAYS the proper tool .. i always use the best position to cut/hit/saw/etc .. never do ii let anything up to chance i never do anything that will injure me, never a back move that i won't walk away from, i turn myself into a robot while i suit up.. because any injury (wrist/ankle/spinal cord/etc) would put my project in the bin) Right now it is working f ck !!! even that is a habit.. turning into supersayan .. robot ..is that not purposefully disallowing oneself to go further than one's grasp!? f ck .. and then i remember that everything tells me / everyone tells me i'm crazy to undertake this task, and then i feel like peter pan .. .. while i am maybe not trying to exceed my own grasp.. at least i am setting myself up to exceed everyone else's...
|
On February 22 2017 03:16 opisska wrote:
In case anyone is remotely interested in updates, I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon.
I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose.
Is that a permanent treatment, like you'll have to do this every week/month for the rest of your life, a one time treatment period, or a few times here and there?
|
On February 22 2017 19:42 AbouSV wrote:Show nested quote +On February 22 2017 03:16 opisska wrote:
In case anyone is remotely interested in updates, I just came from the specialist and yep, I have MS for sure, it seems to be a pretty clear cut case after inspecting the MRI, the spinal liquor and the symptoms. I am starting glatiramer acetate in two weeks (needs to be approved by the insurance company, but I was told my case is straightforward). It's gonna be a pain in the ass, because it's injections and it needs to be kept cold (so trekking's gonna be challenging) but from the available choices it seems to be best, as Interferon is contra-indicated for me due to my other medical conditions and the new pills I can't remember how they are called require constant supervision due to side effects, which would mean even larger changes in my lifestyle than the injections. Also, GA seems to be the least damaging to my body overall - I am probably gonna have some ugly patches around injection sites, but at least it's probably not gonna kill my liver any time soon.
I am almost surprised how calmly I am taking it now. I cried a lot when I was first confronted with the reality, but now it really seems like another chore to deal with more than anything. If there is an emotion to speak about, it's mainly anger with the way how world is and how we all just live a big lottery with our bodies where we are only waiting to be told in which way do we lose. Is that a permanent treatment, like you'll have to do this every week/month for the rest of your life, a one time treatment period, or a few times here and there?
Three times a weak, prefferably for the rest of my life as the only reason to end it is that the disease progresses into the second stage, when the treatment becomes useless and more radical and potentially harmful things have to be used to try to stop progression of disability. Or until an ultimate cure is found.
|
Damn, quite heavy indeed.
Don't lose heart, stay strong!
|
TLADT24920 Posts
Stay strong and keep fighting. My own advice is to live each day as your usual. It's definitely tough but there's a lot of research going into MS like a lot of other medical conditions and the chance of a major breakthrough happening is always possible. Best of luck!
|
Turns out Copaxone (pre-filled glatiramer acetate syringes) ain't that bad for travel. Should be kept at 2-8 degrees Celsius, but can be stored at room temperature (not over 30 deg C) for a whole month, which makes it rather easy to handle. The first injection gave me no side effect whatsoever, so it looks rather promising. The application is also quite easy and the studies on effectivity are rather promising (at least it's no worse than Interferon). I got a "patient passport" in English, so I should be able to easily take them onto a plane. Well, in August i go to the US, let's test the patience of the TSA
|
|
|
|
|
|
EPT
