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  1.  (10248.81)
    @oldhat - yes, intellectually I know you are likely right. But emotionally, there's some betrayal. I'm a fucking mess, and he's edging out the door. More than that, and more than the self pity, is the terrible thought that... if we keep our problems as our own, if when things happen he needs to be apart, then... then we never will be partners. We'll never be a team of us against the world. And that... really breaks me.

    Then again, I've got brain swelling, and I've no idea if anything I feel is right.
  2.  (10248.82)
    Every time I read one of your posts Rachael, I want to fly out to New York and bring you ice cream and flowers and god knows what. You're way overdue for some karmic balancing, and you deserve some random over the top kindness.

    I understand exactly what you're going through emotionally, and it's worse than anything else in the universe and I don't know if it ever actually gets any better, but the only way to find out is to hold on.
    •  
      CommentAuthortrini_naenae
    • CommentTimeOct 5th 2011 edited
     (10248.83)
    @Rachel: *hugs*

    Hugs to everyone else with rough times.

    As for me, I'm at a loss with trying to find an apartment, and a bit emotionally exhausted. Too much to figure out and not having a clue and things being stagnant as usual, and knowing it's because I'm not able to get off my ass. That if I'm truly honest with myself, I'm insanely emotionally needy and want to get approval all the time, and since I'm not getting constant approval, I'm not doing the stuff that used to be the drive for living. Pathetic. That said, there are people who have it much much worse than me, so I should just shut up. I'll get through it somehow, I always have.

    edit to add: @oldhat & @razrangel: nightmares about exes - I have a similar thing, but not quite. I occasionally have nightmares featuring classmates from boarding school, and those can be really hard on me. And this is from what happened over 10 years ago! Very rare, but when I have them, oh so unsettling. And dreams about former crushes. Those don't stand out so much though. Anyway. Sorry to hear you're having to deal with that.
  3.  (10248.84)
    Woke up this morning to find my cat had barfed on the stairs, and had the shits all over the bathroom. :( She's feeling better now, but it was NOT a nice way to start the day, and while I did do other things, 99.9% of the time my brain was wondering if the kitty would be okay, and if I'd need to take her to the vets.

    Carpel Tunnel/tendonitis/whatever the hell joint crud has kicked up and problems at work with machinery have not helped this in the slightest. I've had great ideas of things to draw today and when I finally got the tablet out and started sketching it felt like my hands were gonna cramp to death. I guess better luck tomorrow...

    I managed to get some knitting done, and then checked the internet, to find out Steve Jobs had died. I knew he wasn't doing well, but kinda thought he'd stick around a few more months, and not go after a rather dull apple iphone event which felt to me more like apple's version of 'what I did over your summer vacation'.

    I *think* my depression meds are finally starting to kick in for real this time, but I'm not quite sure, and am sorta half afraid if I say shit's working that it will all go downhill... even if it hasn't gone that far uphill, I don't want to crash again, you know?

    I'm not panicky or flighty, just rather exhausted tonight, and hoping I don't wake up to more kitty poo tomorrow.
  4.  (10248.85)
    i keep... I keep thinking that things HAVE to start getting better... and I just... I just don't understand how things keep getting worse. About two years ago, heartbroken, talking to an old friend of mine, I was told "Rachael, this is hardly the worst thing that has ever happened to you. I mean, your life is terrible!"

    When does the karma happen? Does that mean I might not hurt someday?
    •  
      CommentAuthornelzbub
    • CommentTimeOct 6th 2011
     (10248.86)
    Rachael, i'm at a loss for things to say other than express my fullest sympathies for your continuing tribulations. With an urge to offer something of practical use, can I point you towards this , set up by a friend of mine. After years of suffering with Lyme and struggling to get help from the dutch medical system, he eventually travelled to Germany for treatment and is now a completely changed man from the one I first met six years ago at the height of his illness. There is always hope. And I hope that this site may be of some use to you in any small way.
    as ever, to all, hugs.
    •  
      CommentAuthoroldhat
    • CommentTimeOct 6th 2011 edited
     (10248.87)
    @Rachael,

    Um. Wasn't the past year actually really good for you? You moved in to the city, you got in to school, you stopped being sick all the time and you went out and did stuff for both art and fun (including making delicious Dr. WHo themed cocktails!). If I recall you even stopped showing up online because you were rarely home. And from a personal standpoint, shitty roommate and sickness aside, I would kill several people just to get what you have for a month.

    I'm not saying this to trivialize what you're going through (I'd like to think you know me better than that) but what I AM saying it that, for the sake of your own morale, don't give credence to the thoughts that this is anything more than one rough patch among several in your life and that there is no end in sight. Try and remember all the good things that have happened in the past year and try to tell yourself that you'll get back to that as soon as this rough patch is over. I'm not stupid and have been in similar situations, so I do know that this is easier said than done, but please do try for your own mental well-being. The other option leads to perpetual stagnation and I think we both know, even by the sound of it, that that's not gonna work.

    Take care of yourself. :)
  5.  (10248.88)
    @oldhat -

    Yeah, the past eight months or so did see me get the fuck out of my Aunt's house and back to the city, and I have finally gotten my disability. But.... well, having another health problem that won't go away, having health insurance and not being able to find a doctor to treat me, actually having the means and location to do any number of amazing things but being too sick to do them, watching two of my few friends fade away into marriage and losing the other two slowly but surely and being without the social oomph to make new connections, having money and means but nobody to enjoy it with... actually getting into school and trying to overcome all of this and being kept from doing so by beurocracy and sickness.... I don't know, it all seems kind of worse than just being stuck at my Aunt's. At least then I had the illusion of potential. I thought that if I could move out and had some money everything might be ok. Now, I've got a place to live and enough money to just pay my rent and am enrolled in school, but i'm alone and sick and evidently too difficult to be close to.

    And, y'know... it's really hard to not suffer ANOTHER disorder that causes brain damage, that worsens and causes more long term and irreversible damage to my thought processes and neurological systems and vision and dexterity, another that is ongoing for years without proper treatment or any family concern, and assume that this is something that does have an end in sight. It kinda doesn't. Every day I don't get fixed is another day of permanent damage.

    I feel like Marla Singer from Fight Club combined with Clementine from Eternal Sunshine of the Spotless Mind, starring in a plotline crossed between Flowers for Algernon and Tess of the D'Urbervilles. I used to be really smart and sharp.

    But thank you, Robin. I will try to convince myself that you are right, and i'm just crazy at the moment.

    @nelzbub -

    Thank you very much for that link! I have been considering asking a fellow I know who has a wife who is a Polish nurse if she'd be willing to help me with intravenous treatments. I'm sure I could find a way to order the stuff I need online, and honestly, it seems that in the case of Lyme, you can't really OVER DO the amount or duration of antibiotics. I'm going to have to get the Lyme stabilized before I can ever get the rest of my brain issues dealt with.
    •  
      CommentAuthorAlan Tyson
    • CommentTimeOct 6th 2011
     (10248.89)
    @rachael:
    I'm too crazy and sick for anyone to deal with.


    Not for us.
    • CommentAuthorRenThing
    • CommentTimeOct 6th 2011
     (10248.90)
    We're Whitechapel.
  6.  (10248.91)
    Change of screen name as I wasn't comfortable sharing this much under my real one, obscured as it was...


    @Rachael - sorry things are so rough for you at the moment, both physically and in terms of relationships. I suppose, to add to what Oldhat said though, it's easy in the depths of despair about a situation to lose perspective and see everything as bleak and hopeless and lose sight of anything that is, or has been good around you. Especially if illness or pain are obscuring the view. I also hate seeing the apparent cruelty of the US healthcare system in posts from American 'Chapellers - anyone who whines about the NHS here needs a fucking reality check, as that's what it could be like. I feel intensely sorry for anyone who has to have insurance as a major consideration when they're sick.


    I think I can see where you're coming from though. This week has been intensely painful so far. I had a major argument with my partner about medication for my depression which she thinks is a barrier to her conceiving again. There's no proper evidence that it is, and I'm keen to try increasing the medication to try and get back on an even keel. I had no idea she'd react with the degree of fury she did, and I was pretty angry and upset when she started threatening to go and scream at my doctor, accusing my parents of making me an emotional cripple and throwing stuff around the house. We fought for a whole day and night before reaching a point of understanding, calming down and making up and apologising to each other for the harsh things we'd both said, but it's just left us both exhausted and set us back a long way. I thought she was reasonably Ok, but came back in today to find her in floods of tears again, which has knocked me back down too.

    This is horrible. It's like we're bobbing around on lifejackets after a shipwreck - sometimes we're at the top of a wave and can see past it, other times one of us is in the trough and can't see out, and sometimes we're both in separate troughs and lose each other. When she's like that, I get desolate too, which then brings her back down. What I find hardest is when she can't see that there's anything good at all, anything worth being here for. She'll put a negative spin on everything - cursing the house, prospects for the future, herself, her body. Which, I know is natural and expected right now but it hurts so much because I think we're, in the main, incredibly fortunate. It just feels like one damn thing after another and I can't do a great deal to help. We experienced another miscarriage a few years back and that was hellish, but nothing like this, I guess because time is running out for her. This week was meant to be a kick back and mental reset exercise, it's turned into a nightmare.

    Aargh.
  7.  (10248.92)
    Am I the only one who thinks a whitechapel hoard should descend on Rachel's apartment show her a good time and then leave our empties scattered about? (until the next day when we have a hung over clean-up party because let's be honest, she's the one who would suffer from the mess the most)

    As someone who's illness took them to some pretty damn dark places, I know how hard it is to see the possibility of things getting better, but it definitely won't if you give in and stop trying. Somewhere out there is a doctor who will treat you. It's annoying that you need to find him. I'd say, save that money. Having a wad gives you freedom to do the things that matter (which I think is getting as close to better as you possibly can). Trips are fun, but being healthy is way better. If the doctor isn't in New York, look elsewhere. Perhaps your roommate angst is a blessing in disguise. It gives you the freedom to relocate.

    Research the best doctors for Chronic Lyme Disease sufferes in the world and then call them and ask if they'll see you. Use some of that nest egg for a trip/hotel, see the doc and find out if A) they'd take you on as a patient. B) You'd feel comfortable having them treat you C) what course of treatment they suggest. Then research that treatment and see if it sounds like the best one. Repeat this until you've found the person you know will make you better and see the fuck out of that doctor.

    Sadly there isn't really a karma referee who has a great big pile of awesome and it's just a matter of time until you get it. Of course you can always make your own pile of awesome. I know it's way easier to say than to do, but try to stop worrying about the time you've lost to your illness and focus on how to keep it from getting any more.

    It's possible you're the sickest person here, but you certainly aren't the most crazy. You'll have to try a bit harder if you want to alienate us.

    @singularity - It sounds like you're at least trying to keep the right frame of mind. I'm sorry things are so rough for you and your partner. Does she have anyone who isn't you that she can talk to about this stuff? It sounds like she could benefit from a therapist. At least just to get through this trauma.

    As for me... work has been kicking my ass all week. My daughter leaves until Tuesday tonight, which is good because I'm pretty mentally fried at the moment, but still... 5 days. :-( I'm on call until 9am Wednesday. That means my phone can ring at any time with a major shit-storm. I'm only on call for one week every three months, but I never sleep well while I am. It is going to be a looong (and sober... did I mention I need to be sober?) weekend.
  8.  (10248.93)
    @Rachael -- Thanks for taking the trouble to think about my problem and offer a solution. I suppose I could slot in a big fat graphic across the top of the page, and this would solve the layout problem for maybe 75 percent of the pages, but there are others with partial (and one full) bleed and that makes things more complicated. Also, the readability problem is a big enough problem by itself.

    I'm printing the book through Lulu now, since I need to have some copies soon, but still pondering longer-term solutions.
    •  
      CommentAuthorrazrangel
    • CommentTimeOct 6th 2011
     (10248.94)
    Fuuuuuck. Just broke the screen on the good laptop. Goddammit. I'm drowning in debt; I have few resources, almost no redundancy (just my own laptop which I hate using because it's such a piece of crap), desperate for any kind of income and now the primary way I have of keeping up and looking for work/resources/my whole fucking life is a big SNAFU.

    Dammit dammit. I don't have the money for a replacement screen. And I sure don't have the skill to replace it.

    FUCKING HELL. Ugh what do I do. I'm such a shithead. dammit. So desperately hoping today would go in a better direction. fuck
    •  
      CommentAuthorAlan Tyson
    • CommentTimeOct 6th 2011
     (10248.95)
    @razrangel You're not a shithead. Bad things are happening, yes, but it's not down to you or your character as a human being. No need to make it worse by thinking so.
    •  
      CommentAuthorrazrangel
    • CommentTimeOct 6th 2011
     (10248.96)
    I appreciate that. I just hate that I've been laying about wrecking my life through lazy, undisciplined bullshit and then I tried to get up and move around today, cross a few things off the to-do list and promptly knocked the thing down. It's entirely my fault and all because I'm careless. I somehow kicked my own self in the gut (and took my mom's computer with me).
    • CommentAuthorflecky
    • CommentTimeOct 6th 2011
     (10248.97)
    @ all. whoa..seems a lot going on..will read everyones posts proper..
    •  
      CommentAuthordorkmuffin
    • CommentTimeOct 6th 2011
     (10248.98)
    @Rachael,

    I work on the marketing side of healthcare so take this with a grain of salt.

    But my job is to pay a LOT of attention to social networks for people suffering from chronic diseases, especially rare ones. I know it may be an effort to join a second social network, but there are a bunch of groups out there comprised of people with shared experiences for you.

    Found this yesterday doing work research:
    http://www.chiarisupport.org/

    There are more, I'm sure. In general, overall chronic illness forums might be a good resource for just venting to people who have similar experiences.

    ALSO (another product of work research), here's chronic illness cat.
    • CommentAuthorflecky
    • CommentTimeOct 6th 2011 edited
     (10248.99)
    @ all.I know there is no sobbing out loud on Whitechapel..yet fuck!! When i look at all the amazing art,photography,way you guys can debate in a fashion i feel out of my depth in i stick you on a pedestal.I really do.
    I think "That may have been me if i'd not led such a life of squalid debauchery".
    I'm scared to enter threads i know nothing about.To be honest it's a miracle i've even got a laptop intercrap thing together.
    Yet when i read peoples stuff here it breaks my beating heart.It really does..

    I suddenly realise we are all homo sapien.
    At the end/beginning/middle of the day we are all just flesh and bone.Animals with a amygdala in their brain things.

    I too was thinking how shit it is for people in the states when it comes down to healthcare.Frackin' disgusting!!
    Much as i dis' the N.H.S they did save my life about 9 years ago.And i wouldn't have the care and treatment i've got at the moment with my final detox.

    @Rachael: I was cooking some breakfast earlier today in my kitchen and wished i could sliver down the net of filth to help you in someway.I was talking to a cool lady friend,who has serious health issues,about what your going through and even she felt for you.You are one brave and wicked person and it just gets to me that you have to travel to get help.Lousy american corperate greed fueled healthcare..please excuse me yet it's something that has had me pissed off for years.

    I've suddenly got that awful feeling of "I brought all this shit on myself.Hepatitus c,heart trouble,fooked legs,deep vein thrombosis etc cos i used"..and c'mon..who has never thought that about drug addicts and alcoholics? I mean..really..really..shit,man, i see other fuck ups and think it myself.I hate whiny ass junky self centred droning boring addicts at times. I judge the crap out of them.And fookin pissheads..i detest their utter shite ways.At least a junky can nod off but drunks..all in your face as if they are so clever and..poor,rich..whatever, they can be the most nasty and bitter twats available on the side stall of humanity.

    Pissed off with NA!Hate the god thing.Everytime i hear "loving god" we want to cripple out from the depths of the inferno and give daddy a god shafting.Honest..met some really nice people but there is always a fucktard wherever you go in life.Always..well,apart from here,unless it's me and NOOOOO!!!I'M SHIT!!!
    Bloody disease of addiction..i'll show em a disease when i turn in a meet in a few hours.Get them all zombots!!I actually mentioned freakangels out loud a few days back..the look on their faces..pricks.out of space.internet explorer stopped working.cig time.
  9.  (10248.100)
    @Rachael
    I think one of the things that makes life so hard are the things that are afflicting you out of your control, things like that used to drive me crazy. (i empathies with the illness front- tho not having something as debilitating as yours I was bed ridden for the better part of a year and have been through several surgeries- i had to crawl up loads of drs asses to find out what was finally wrong with me)

    Not sure if it will help, but one day after being stuck in a very deep depression I went "Fuck you world" and decided to be happy at it as hard as I could.
    I would do everything in my power to make sure there was fun in my day no matter what (like the crickets!!!<3) If it doesn't make me happy or those I love and care a bout happy it is not worth my time. For all we know life is short and this is all we have so try and make it the best we can for ourselves and those we care about.

    Keep at it, get up in life's face and poke it in the eye, don't let it get to you- make it your bitch. Do what you need to do for a smile and you time. Also the boot to dr's asses and keep going till you find one to help.