I spoke with someone earlier who told me that I didn’t always have to be running from death. That I was in a huge rush to accomplish stuff in efforts to escape or evade death.
And I wonder if, no actually I do realize that this is not a normal state of being. That considering and weighing one’s mortality is not something that people really do. I told her that everyone keeps telling me I should be grateful, bending down to kiss the earth beneath me, on a mad quest to find the reason that I am here. She says, “And you can say, ‘I don’t give a shit'”.
July 12, 2006 at 12:44 pm
You can say you don’t give a shit…but if you give a shit, and it motivates you….well, motivation isn’t a bad thing. It is only bad because you don’t feel like you accomplish enough…and feel bad about yourself…To me, you just seem ultra motivated…If running from death gets you to get stuff you want to do completed, then it’s a good thing. AND, you inspire others along the way. It’s all in how you look at it…half empty or half full. (Yes, cliche again. ha) 🙂
July 12, 2006 at 10:13 pm
I know
It is all a matter of perspective. My issue is that all of this supposed motivation is getting me nowhere. Like my brain is too disorganized to figure it all out.
July 12, 2006 at 10:24 pm
Re: I know
You’d be surprised…it isn’t nowhere…Your brain spins…you come up with ideas…weed stuff out…you don’t just jump in without checking to see if there’s water first…you come up with stuff and the one or two you eventually pick will be the things that end up winning…Look at this stage as the “seeing what sticks” phase…
July 12, 2006 at 2:31 pm
I’m not sure of the context (your therapist?) but it sounds like from what you have mentioned here that she was concerned about you and trying to help you… like she maybe thought you might be putting too much pressure on yourself to accomplish things or spending too much time worrying about the future instead of focusing on (and enjoying) the moment.
It is nice to be more aware of your mortality but in a savoring sort of way I would say. If it in fact does make you relish with wonder each moment in your life, that you find merits a special place, (an argument with s/o for example wouldn’t fall into that category but can nevertheless have a certain amount of value) then that heightened awareness can be a beneficial state. However, if it makes one feel harried or fills one with a sense of dread about what might be around the next corner and how much one can get done before one gets there, then I would say it could actually be harmful. To your health even..
Awareness, like everything else, has its pluses and minuses. 🙂
I’m not sure if that is what this person was saying, but as someone who has been in a position resembling yours (granted not to that apparent degree — though at my last appmnt, this June, I found out I have 2 mechanical valves — not one. I wonder how long everyone was banking on the fact that this wouldn’t be clear to me, since they know I worry as well. I thought the aortic valve was ‘reconstructed’ not totally ‘replaced’. That explains the sound at night…) it might make sense…
July 12, 2006 at 10:17 pm
oh my
So you have the aortic replacement and maybe the mitral as well?
The clicking is a lovely wonder. It used to keep me up at night. And it’s one of those things people have to get used to.
I understand that whole living for the moment thing in concept, but at the moment I can say that there is not a whole lot that I consider valuable in terms of my moments. Yeah, I am doing stuff. But in some ways what people tell me seems to be ingrained into my brain. Like, yeah, I should be doing more since I have had so many brushes with doing less. As in what the hell is wrong with me since I haven’t done anything too remarkable with my life?
July 13, 2006 at 12:36 am
Re: oh my
Yea, mitral and aortic. Nighttime drum solo…
Aaah ok, pieces fitting.
Unsupportive folks in Deaa’s life reinforcing feelings of guilt which leads to self talk like this…?:
“Like, yeah, I should be doing more since I have had so many brushes with doing less. As in what the hell is wrong with me since I haven’t done anything too remarkable with my life?”
Smart therapist { reinforcing confidence in your ability to decide for yourself what is right for you at the time, keeping in mind above unsupportive folks will probably never even have anything remotely close happen to them in their lives — starting from birth no less, therefore they really should shut the hell up and go about their own business } says:
“And you can say, ‘I don’t give a shit'”.
Which I second. They can truly buzz off. I get the same rap… Heart surgery at our age is so uncommon, and people with this particular condition are so uncommon, that most people really have no right to assert any sort of judgement about what we should be doing with our lives at any point in said life. Hell, even the doctors can’t fully understand what the implications are for us. Only to live in a body like this could someone even begin to suggest, speculate or relate — and not even fully then for we are all different and Marfan’s has so many different types of mutation manifestations.
Our gift is to be freed from the constant pressure of instant gratification, the trappings of superficial appearances and moronic hell of keeping up with the Joneses. That’s the way I look at it. I’ve had people push me all sorts of ways and judge me in all sorts of ways also, through the course of my life, and at 36 I concur with your therapist. I reached a point where I just don’t give a shit anymore what other people think. Fuck them, they should be worried about their own self improvement and not mine. I can handle my own self improvement thank you very much… Of that I am fully capable. No one will rob me of my right to self determination. Since I was very young, and probably since you were very young… I knew things were going to be different, and accepting that difference and realizing how it might be perceived is what has brought me my greatest moments of peace. I say moments because there have been times I’ve forgotten… but it is always good to remind myself. Hopefully it will help you as well to have a reminder from someone similar to you…
On the other hand though… I will say if YOU feel in your heart (ha ha) like you want to do more, then do so, but really take some time to think about your limitations (if you feel you have some)… and think about whether what you want to do is really something you want to do for yourself or if it is something you want to do because someone ELSE made you feel like you need to do it for whatever reason in the grand scheme of things that might be….
I hope I don’t offend you in saying these things. It is only because my heart (ha ha) goes out to you. 🙂
July 13, 2006 at 1:10 am
Re: oh my
Hey there moonlit – I just want to say thank you for your words… you said some things that I really could relate to and needed to understand too. Thank you!
July 13, 2006 at 11:57 pm
Re: oh my
Thanks jhohanna. I’m glad my little tirade might have given you some comfort. It tends to be a subject I’m sensitive about, so when I go off …I go off 😉
July 13, 2006 at 1:17 am
Re: oh my
No offense taken. I think that these perspective from you and Jhohanna and Doug have made me feel a little less, or rather a bit more justified in reacting the ways that I have. I think the biggest critic in my life isn’t even so much me but my mother. I talked to her recently and she is off on this I enjoy not working and I am lazy kick. Which is funny given part of the discussion I had with the therapist was about the fact that I am so inconsistent…I am either not working (as I am now) or working full time and bartending three nights a week, which is not so great in terms of energy and sleep schedules. I have no happy medium, and the fact that I can make more in one night bartending than I can working a full time job is something that makes everything a little more complicated. I still find it apalling that she is on some kind of rampage (my mother) to make me feel guilty for never attaining some kind of smashing greatness with absolutely no support from her. And pushing and pushing me to go back to work immediately since I am apparently lazy while not working. I told her the other day they hadn’t set the date yet for the vocal chord repair, and it would probably be in a month or so. Her reply was frustrated and angry, telling me it was supposed to be soon, wasn’t I bored, making judgments about my character etc. Not that any of this stuff is new, but it is something that has been repeated from people around me. It’s kind of interersting really, how full of advice everyone is without knowing what the hell they are talking about, given they have tried vaguely to understand. My former best friend called me mediocre recently so I guess these judgments are fresh on my brain. The general public I am not so concerned with. I find people staring at me quite boldly lately, given it’s summer and I have to wear things that are comfortable and there aren’t a ton of scar covering kinds of things.
There must be something wrong with me that I can’t ignore her comments. She has been telling me since I was 12 I would never do anything or be anyone, and it hasn’t changed.
July 13, 2006 at 3:09 am
Re: oh my
Ummm…..wow…..my did those last comments bring back painful memories
My adopted Mom used to tell me that I was lucky she got me because I was so fucked nobody wanted me…not even my own birth mother….she used to tell me that I would never amount to anything
they also waited till graduation day to tell me that the “college fund” was non-existent and that she wasn`t gonna pay for me to go to school,drink, fornicate, and smoke pot anyway
so guess what….I paid my own way for a year then droped out
I also quit speaking to her for about 13 years….from 18 till 31…at 32 I went to smooth it out and introduce her to her 9 year-old granddaughter….she admitted to treating me like shit all my life…….well, all but owning up to the extreme physical abuse….complete with real streaming tears and the whole nine
I believed her this time….for about a week till I saw here true colors come shining back thru the sheep`s clothing……when she took to treating my kid like shit, I wrote her off for good….that was almost four years ago
I am free of the baggage and I have no regrets
see I was The Great Disappointment…..I was the intellectually gifted child who rather liked being rebellious
I guess she got hers in return for all the years of abuse……I frequently stole the family car and once flipped it 7 times (at about 85 mph)…..car was totalled….don`t worry…she hit my bank for a $5K CD my grandparents had set up for me for college….my disgust for her runs very deep
she had such great (and vicarious) aspirations for me……boohoo for her
are you sure we aren`t related?
July 13, 2006 at 3:46 am
Re: oh my
Oh my.
I never got the all out blunt, you were lucky to get us. I just recently wrote about this particular facet..I just started writing my auto-biography.
She reminded me that she knew people who had returned their babies. She had told me when I was adopted that they could have returned me, and they had had friends who had done it. I wonder if it was some weird thing she was telling herself, or if she was really trying to half ass tell me she gave a shit.
I am the middle child so certain rebelious streaks would be expected, I guess. But I am also the only adopted one, and she took no restraint in taking her bullshit out on me.
Last year when we went to Colorado she told me not to tell anyone that I had had an abortion two days before I arrived because it was my cousin’s wedding and it wasn’t about me. I could totally understand the request, but the fact that my mother sat fawning over her neice’s kid and playing with all of the other babies and then sit harping on me because I didn’t dance with everyone was just totally out of line.
So when I was waiting for my birth mother with my Aunt, I told her what was going on. And I also told her that nobody will ever talk about it or admit it, but I knew that I was treated very differently from my brother and sister. And she admitted it. She said they had had discussions (my aunt and my cousins) about it but also stated I didn’t react the same way as my brother and sister either. It took them six months to place me because I had these brown cysts on my eyes and I guess there were a lot of perfect babies then. And my mom would take one with a manageable disability. This was superficial and nobody could assure prospective parents the cysts would go away. So I was in foster care until I was 6 months old. And something bad happened to me there I assume, since all I did was scream and cry any time anybody tried to hold me (especially my hands). So I sat there listening and it all started clicking. And I felt like an even bigger fuckup. This woman adopts this kid and wants the baby to love her but all it can do is scream and all she can do is be reminded how horrible it is to return a baby.
It has always been like that. I have always been treated differently, had to use my sister as a pawn to do things. Now my mother sits happily that my sister (her own blood no less) has her masters and keeps reminding me that I have no degree or anything to show for it.
She tried once to tell me that they had had hopes for me, too. That I was smart without even trying (which I can admit to…being the master procrastinator pulling off As). That was once. She was the manager of my high school and every teacher I talked to said she gloated about me. Which I never actually heard since she was better with my friends than she ever was with me.
I have thought multiple times about cutting her off. But I do love my dad. And I feel terrible that I am the only child to feel this way. I have no support system, no one to back me up.
July 14, 2006 at 12:06 am
Re: oh my
In reading your journal in the past and things you have mentioned, this post and ensuing comments just seemed to be indicative of that type of situation and it tapped the anger in me. Sorry my response was so vehement and that I didn’t investigate further before spewing. It was presumptuous I think but it helped me to vent as well so thank you for having the courage to post about your situation and keep the thread open for discussion. It was probably therapeutic for all of us.
Overall it sounds like you’ve got plenty of motivation and that it is just that it needs to be prioritized, accepting of imperfection and applied in moderation.
In my social work classes we learned about something called The Looking Glass Theory. Google it if you get the chance. You won’t feel so alone in applying what others views are of yourself to yourself as well. It is fairly common. That is why I am so adamant about determining for myself where I want to go with my life and how I measure my own progress getting there.
And you are right… you have nothing to be ashamed with in seeking help. Even as a social worker when I was young …I’ve still been in and out of therapy four times over the course of my life to help me handle the load. The load we carry can get a bit on the heavy side sometimes 🙂
July 14, 2006 at 6:53 am
Re: oh my
Thank you though. You have always been so nice to me, without even really knowing me. A good friend used to say I would go off on all kinds of political stuff all of the time but never said a word about how I felt.
I am not really that good at clarifying how I feel. I just tell it like it is and I think people draw their own conclusions. I say redundant things like, this made me angry or I am confused, but the extent to which my feelings have robbed me of so much, including expressing any kind of emotion, has been hard to handle sometimes. So I just don’t.
So much of what you and Jho said made a big difference to me. I asked E to read through but he is too busy with other stuff. Maybe it would make more sense to him, or I would make more sense to him, having you guys on my side, if not only for understanding how deep this shit burns.
July 14, 2006 at 11:01 pm
Re: oh my
“There must be something wrong with me that I can’t ignore her comments. She has been telling me since I was 12 I would never do anything or be anyone, and it hasn’t changed”
there is nothing wrong with you….and take it from someone who also lived childhood much the way you did……what she said to you as a child stays with you forever……and it`s easy to stay HURT all you life for those things……the hard part is overcoming them and convincing yourself that she was an asshole
you gonna take the easy road or the hard one?
cause the hard one means a show-down `tween you and her……you have to literally speak your peace to her face once and for all for you to let it go……the validation of your feelings IS NOT in her being apologetic or accepting her mistakes……the validation of your feelings comes when the words physically stream forth from your mouth to her ears…..you are waiting for her to realize and validate your pain…..and she is too self-involved to do that……maybe even incapable of EVER doing that…..are you prepared to carry your pain the rest of your life till Mom gets her head out of her ass?……VALIDATE IT ……by TELLING her……and as far as yer Dad….well, if he truly loves you, then he will not write you off for speaking your peace with your mom
July 17, 2006 at 8:01 pm
Re: oh my
yeah. they always say the beatings leave your memory faster than the word violence.
I am still intimidated by her I guess. Not that she has any direct control over me. She lives three hours away. I see them only on holidays, which usually involve stress and me sleeping a hell of a lot.
That conversation would probably erupt into some kind of violence but most likely an emotional kind. I know she knows what she did, and I do know she has regret for it…problem is she doesn’t know how to change how she reacts to me so she just goes off.
Either way I know I am cut from different cloth. And I will never be like that to anyone I love. Or don’t for that matter.
July 13, 2006 at 3:11 am
Re: oh my
“Unsupportive folks in Deaa’s life reinforcing feelings of guilt which leads to self talk like this…?:”
I don`t wanna judge people I don`t know but I think you may be right
July 14, 2006 at 12:13 am
Re: oh my
It sounds like you have similar situations as well. You are both really strong to have made it so far under these conditions… Geez.
July 12, 2006 at 6:34 pm
Ahhhh… the ‘in love with death’ issue… I know it well. *hug*
Given what you have been through recently, this is a normal and natural state of ‘grief’, in a way. It is actually classified as grief, as I found out from a coworker here who suffered a mild heart attack and went through a similar experience.
When I was diagnosed with Marfan’s in ’98 and told I could never have kids, I went through a very similar situation with death. For a while, it got almost out of control, to where I was inviting her to take me away. But it was also a *most* difficult time in my life, with trials I didn’t think I’d overcome anyway. But on the flip side, I was doing everything I could to make sure I did everything I wanted in the time I thought I had left, and avoiding looking forward too far. I never realized how much it limited my growth and advance as a lady until I got past that. It took me nearly a year, too. :\
Whatever time you have left on this plane is a gift and is precious beyond compare. And (I haven’t read through about your surgeries, but…) if I have any idea about dissection repairs and shunts, you’re good to go for at least the 1/2 life of DuPont! 😀 Ok, I’m teasing. Just be sure to be happy for all of the blessings we share, and for each day that the sun rises. Do what you can to take care of your health, and most of all, don’t stress! Stress is the biggest killer of us Marfs, I’m convinced.
I always try to remember that death is not the end of this life, but the transition to another realm/plane of existence. But then.. I don’t look too deep into it, because of my own morbid fascinations with such things. I’m entirely too gothic sometimes for my own good. 🙂
July 12, 2006 at 10:32 pm
Oh yes
I realize that about what you said in conclusion. It is a fact I wholeheartedly believe in.
The issue is that I have been doing this running from death thing for the past 11 years I think. My diagnosis was in 1995. Two surgeries later (the abdominal and thoracic dissections and grafts) I did my research and all of the books I read indicated I was half over with my life. Things like school and planning seemed completely irrelevant at that point so I didn’t bother doing anything too fantastic, but I dreamt about it all of the time.
Then I went to school for a year in 1997, worked full time, went full time. Ran out of money and energy and was right back under the knife in 1998 for the valve and ascending.
I moved to New York City 6 months after that surgery, wanting something different and to get away from the morbidity and literal insanity of Massatwoshits.
The entire time I have been here has been a hurried attempt at getting health insurance. I worked the dot bomb era, working for a few now blown companies in pretty remarkable positions. Managed a gym, managed a bar, bartended, waitressed, worked in retail, managed a spa (which turned into just front desk). I have not had a moment to really consider doing the things that would make me happy because I don’t have the means to do it without considering the health insurance and other assorted affairs.
I am mortified now realizing how little I really have to show for myself. I got accepted back in 1995 to Boston University to a program that allowed like 250 kids in. And here I am working jobs until I earn health insurance, quitting once I earn that and paying Cobra because I totally hate every single thing I have done eventually (except managing the bar because it was a gay bar I turned into a rock club without offending anyone). I know that I need to be in business for myself but I lack the basic means, like capital.
I have been in this death trance for so long now, afraid everyday that the time bomb in my chest would explode.
For ten years I thought they had been telling me I could not get pregnant, but it was that I should not. So I got pregnant and was ill-prepared to deal with that reality. Problem is the stress of that situation probably messed up my subclavian arteries and then I had a dissection appear at what would have been my 6th month. People try to tell me it was for the best, the abortion, but I am hard pressed to try and be convinced: I might have made it, might have been so happy my artery would have stayed in one place. But we will never know. Now the whole freakin aorta is replaced and no amount of technology will save the pieces of me that have been removed already. And I understand, because I have been aware since May that kids will now never ever be in my future. And I was adopted and I didn’t want that.
My problem is that I have no idea what to do. I have this new lease on life as they say. Nothing worse (knock on wood) can happen to me. The big stuff has been replaced. But I did live every day for 9 of those 11 years thinking that honestly, it was more than likely going to be my last. And why should I bother thinking I would have anything normal, anything good.
This sounds lame and pitiful I know. It wasn’t mean to be. I am just typing what I think and I don’t really edit anything. I am not that pathetic. Just confused.
July 12, 2006 at 10:46 pm
Re: Oh yes
you sound afraid to “jump”
so what`s the worse that could happen?
the Gov gets stuck with defaulted school loans because the Docs forgot some trivial artery in yer shell and you clock the hell out untimely like?
you also sound worried too much about what you HAVEN`T done in the past as much as what you will do in the future….Fuck the past, dear…..it`s over and rehashing it only occupies needed emotional space within your grey matter……try and sit still for ONE second…..take a deep breathe…… and congratulate yourself for being TOUGH ENOUGH to have survived what you have lived thru and then reward yourself for the effort……SMILE!……DAMN!….you have damn near beat it, Bionic Woman
stop subjecting yourself to your own inner purgatory and go do domething completely out of character and stupid…..then laugh to yourself…. as you are still breathing and still have the capacity and FREEDOM required to do just that
I`m kinda blunt and I hope you aren`t offended by what I just wrote….but I tend to think, considering the circumstances that you deserve better from yourself than what your giving/getting
July 13, 2006 at 1:19 am
Re: Oh yes
You go ironchop. And I totally neded to hear it too. *smile* I beat myself up a *lot*. I mean, to the point where I’ve damn near driven my husband nuts. Always stuck in something, always castigating myself for something small, or agonizing over why some jackass is living rent-free in my head. A lot of that crap lately, but that happens when you learn that most people out there are asshats anyways. (referencing a whole *ton* of real life crap that’s been going on)
And ya know… if I hadn’t learned to say ‘fuck it’ to at least part of my issues and troubles and things that, I know I wouldn’t have survived what life continues to throw at me. No matter how grumpy I may be about it in the moment. 😛
You have some great wisdom, and thank you.
July 13, 2006 at 1:39 am
Re: Oh yes
Oh no. I am never offended. I have been trying to give myself pep talks like this, but it seems completely pointless when I am the only one around me saying it.
And when people have said it, it’s usually forgotten after enough designated appropriate to be sad time has gone by.
Thanks for the pep talks, guys. I haven’t felt this normal probably ever.
July 13, 2006 at 12:44 am
Re: Oh yes
I want to tell you how proud I am of you for being so strong. You simply don’t know the courage you have shown by posting this, and I’m humbled that you shared it. Boy, do I know about working my arse off and getting nowhere. For 10 years, I didn’t have health insurance… that’s why I didn’t find out about my Marfan’s until I was 25. Not to freakin’ mention that no doctor in my home town *ever* knew what it was. I just had something weird. Even when my heart acted up when I was younger, they chalked it up to ‘anxiety’. Yeah… lovely. Didn’t help that I was a product of 18 years of military hospitals. :O
I cannot pretend to know what it must feel like to have been through all you have been, but I can relate on one small point, and it’s not even in the ballpark. :\ I can’t imagine having carried life for six full months and then having had to go through what you did. You are so amazingly brave and courageous. I must say that I know it doesn’t seem like it, but it was the ONLY thing that saved your life. The last two months are the hardest – and you could have lost both the baby AND your life. Call me selfish, but *I* for one am glad that we still have you. If only so that you could teach me. Ok, I know that is uberselfish, but I’m unabashed. I have miscarried two children, though. The first, I didn’t know I was pregnant, and started BC pills – stupid place didn’t test me first. *duh* And I *so* didn’t even think I was … frickin’ University Nurse. But then, well, I got real sick and went to Dragonfest – a pagan festival for a week in the mountains… Um, I ended up with pneunomia and ended up losing the baby. Both were definitely difficult, but I have learned it was meant to be that way. Me having a baby at 19 would have completely ruined my life, and my ex was severely psycho at 22. We just never know what the future holds, but we have to hope that the best is yet to come.
It’s been nearly 10 years that D & I have been together… oddly enough, I haven’t gotten pregnant once… how you like that for Catholic Rythym? But in 2004, I finally got the best cardiologist in the city to tell me I am fit enough to have a baby. A! But, I have to go on the beta-blockers, et al… it’s not like I haven’t been before for migraines, but. *feh* I have no real need to take them now that I’m not working 80+ hours a week in a sexual harrassing/discriminating environment for next to peanuts – for SD anyway. I stick it to 40 hours a week, period, with some studying on the side. I have to do that to keep up. And I work for a damn good company and the environment is good. So… once I got off of this Effexor, I am going to start trying to get pregnant … for real. 😀 I start weaning off of it next month, so we’re hoping to start trying next March. 😀 But if we have any trouble, we have to be ready to face the facts. And I’ve already known that I am going to have to adopt, only because I want more children than I can possibly give birth to. 😛 I do want to have 4 kids, and Lord knows I can’t carry them! 😛 I know adoption is hard to consider, but there are soooo many children who need love, who need a home, and who just need a chance to shine.
And then, then there is the beautiful wonderful world of stem-cell and genetic research to consider!!! Imagine, if they can make mice spermies from their stem-cells and turn them into full grown sperms and fertilize eggs that become babies – who knows where we will be in 20 years – if the damned Conservative Right keeps their paws off of Science, that is. Damnit. *BAH*
You’re not lame, not at all. I’m proud of you, you are a survivor, a fighter, and an inspiration. Thank you for sharing all of this with me. I gotta run and start supper or the husband is going to try & do it! *ack*! I’ll still be around though for the evening. *hugs*
July 13, 2006 at 1:07 am
Re: Oh yes
Wow.. You are very lucky to be able to go to full term. All of my Marf and heart docs have advised against giving birth. It must just vary so much from person to person. Of course there is the 50/50 chance you will pass it on as well.. though there seems to be conflicting info on that.. at least 10 years ago there was. I thought it could only be passed via the male but I’m now wondering if it is not by both. I got pregnant at 24 and opted out in the 3rd month because I knew another Marf who died giving birth to her child due to aortic dissection and could feel the strain on my body… I slept constantly because I was so tired. I don’t regret my decision at all… There is no way by early 30s that I could have kept up with a child as a full time mother…
July 13, 2006 at 1:28 am
Re: Oh yes
I’m really very lucky. For some reason, I don’t have problems with my heart anymore. I did – believe me, I did… I had a cath at 6, echos every year until I was 12, and then I moved to Colorado, and it all but went away.. I had regurge and relapse. Maybe moving the higher elevations helped? Even when I went in in 2k4 for the TEE, they couldn’t find anything but a bit of the regurge still left. I have some blood pressure issues when I get stressed out, and they have been serious enough to be controlled by Verapamil, but other than that.. nothing. There is something different about me from most marf’s too, because I’m not as thin as many. Well, I was… *cough* Until I hit 28, and then the boobie fairy came and everything… In fact, I gained all the way up to 178… to the point where the docs were *concerned* that it was too much strain on my heart. So I keep it down to 140/145. We’ll see how it goes. I’ve got to *get* pregnant first…that may prove to be a challenge, we’ll see. There’s gotta be a reason that it’s been 10 years and I haven’t gotten pregnant, and my hormones are just fine – except for the irregular periods and PMS… :P:P Even the boi is starting to wonder if all that time in the Navy didn’t have an effect. :\ But then, my sex drive has been next to NIL since I’ve been on these damn anti-depressants, and before that, I was so stressed out I was killing myself.
If there’s anything I’ve learned from any of this, working yourself to death is *NOT* worth it. You’re just killing yourself faster. We have to take the time, enjoy our lives we have, and the people we love, and LIFE! That is part of the secret to living long. IMHO, of course. Because believe me.. I’ve spent a great part of my life pulling 80 hour weeks, plus school, plus mommahood (my ex’s daughter), I didn’t get any further ahead, and all I got was seizures from the stress. Stress kills us faster than anything… Yawnt proof? In Britain, during the World Cup, heart attacks doubled. 😛 Ok, that was bad, but it’s true. 🙂
July 14, 2006 at 12:15 am
Re: Oh yes
I wish you the best of luck in trying! 🙂
July 13, 2006 at 1:36 am
Re: Oh yes
Cheers to that!
The only reason I considered it was because it had never happened before and seemed like my last chance. I am in no position to be able to do it…
Though the thing that made it harder was my best friend from middle school got pregnant literally the same week. And I have had 3 other people in the process of having this fall or having given birth this last Spring.
I feel left behind, I think. I need to remember to not take it all personally. But I’m not in any place I pictured myself to be pretty much ever. At this point and I guess in times past.
July 13, 2006 at 1:31 am
Re: Oh yes
I didn’t go full term with it. I actually opted out 8 weeks in, something they tortured me with, having to do the two heparin injections twice a day for a week before and 5 days after. I’m not sure if they wanted to give me a taste of what it would be or what.
Either way, it actually still pisses me off and makes me wonder what the hell kind of lesson I was supposed to learn with that. Tell me for ten years no, tell me yes, and six months later it’s all no’s again?
I don’t understand what that’s all about. And maybe you are more apt to care about having your own because you felt not a part of something. Knowing my birth family has solidified some things for me. And I am kind of afraid that my own adopted child might be as thrilled as I was in finding my own parents because I was so very much unlike the parents I grew up with.
But they were really messed up anyways. That verbal thing stemmed from physical stuff as well, so I should just be happy to have a somewhat balanced perspective on what is right and wrong.
I have been thinking of getting my tubes tied with this last vocal chord repair since any procedure I would have at the hospital would never be a same day affair, and the otolaryngologist encouraged me to bulk up on procedures. Either way I find out Tuesday when the next one is and I have to talk to the ob/gyn team about tube tying, harvesting etc. I don’t want to do anything that permanent simply for the stem cell research and advancements in technology. But if they could still harvest post tying, life could be good. I can’t be on normal birth control because of that stroke blood thinner high blood pressure factor.
Being the only industrialized country in the world that does not provide health insurance for its citizens is something that makes me very angry.
If only for that, things might be different.
July 13, 2006 at 2:02 am
Re: Oh yes
Oh dear God, I couldn’t live with that. My mother was on heparin… *ewwwww*. Actually, that’s how I know so much about all the drugs, she had DVT and suffered badly. I know she wasn’t a hypochondriac, but shit, she had so much wrong, it sure seemed like it.
I can understand your anger, believe me. And I think you’re right about wanting to have your own genes and blood and flesh, and say, I DID THIS. Or much better yet, WE DID THIS. We have even kicked around D having a baby with someone else, just so I could have his genes. I dunno. We’ll have to see. I grew up with a lot of adopted kids, and my brother and sister were adopted, and so I got to witness first hand both the good and the bad that goes with growing up in a home like that. And believe me, I’m beginning to think it was the curse of the 70s, the bad parenting and abuse. I actually ended up WISHING I would be adopted, if only to escape. That didn’t work either… they sent me to an equally worse hell… but I got bettah!!!
I would think about tying your tubes and all that, talk it over, etc… especially the harvesting. For all its wonders, birth control is *EVIL*… ugh! I’ve had *so* many bad run ins with it, that I won’t touch the stuff. And… I’m allergic to latex *and* nonoxynyl-9. Lovely, huh? Nothin’ like thinking you have an STD til you can get to the doc, and then they giggle at you. Pros & cons of growing up ignorant of sex, I guess. The things that they are beginning to be able to do for infertility is amazing. And if not in THIS country, there are those around the world that are doing such things.
I’m all for you on the health insurance. And the whole Medicaid/Medical system? SUCKS!!!!!!!!!!!!! Something is so completely *wrong* with the entire health care industry… but I won’t get started, cuz I’ll be here *all* night, ranting, and I’m sure that you have just as many! 😛
July 13, 2006 at 3:52 am
Re: Oh yes
Yeah. I think it’s important for Eddie to have his own. But I don’t think he is capable of knowing for sure, given he is ill prepared to even think about it. Sometimes I am afraid he will wake up one day and say no, this is not what I want. I want my own. He comes from the polar opposite place that I do.
It has been that way with everyone though. Everyone leaves usually. He hasn’t left, and I am really grateful for that. But, I think it’s hard to know what you’ve gotten yourself into until you are actually in it.
I know I will adopt one day, since I have no choice either way. And I know I am well equipped to deal with a lot of the issues. But I just never thought I would have to. Call me a spoiled brat, but I am just really pissed off that I couldn’t right all of the wrongs done to me.
Then again, maybe I will never be a mom. I shouldn’t fret about it since it is so far off from happening in any foreseeable future.
July 12, 2006 at 10:27 pm
well….I like to make the most of my time here….regardless if my time is only a couple more years or 40 more years….doesn`t matter to me….I have always been that way and I firmly believe it has nothing to do with fear of death, rather it means I am impatient and can`t wait to accomplish all that I`ve set out to do in the quickest amount of time possible
it`s all about instant gratification for me as well as a lack of patience
look at it this way, if yer in a hurry to get a bunch of ahit done before you die and it turns out you aren`t scheduled to clock out just yet when the list is finished,then you got some spare time for newer,more exciting things to try
so hurry up
and OF COURSE it`s a normal state of being……it`s called DRIVE
without it, you`d be a couch potatoe
in any event, a rush to complete things by no means enables one to cheat death anyway…..now if you were investing in miracle cures and Super vitamins and plastic surgery, I would tend to agree with your friend……otherwise I would just chalk it up to Drive, Ambition, and the determination to get the most from life in this plane of existence
July 12, 2006 at 10:39 pm
but
I think I spend a good amount of my time planning what I am going to do next.
When she asked me what I wanted to do. A huge list ran off in my brain:
Make jewelry go to jewelry school, go to college for writing, start a magazine, go to Europe, ride a hot air balloon, have an art show, have my own mini empire of clothing, jewelry, pottery, art, accessories, furniture. I want to buy a house in Colorado, have land and my own thing.
Sadly, I had plans for everything, ways to do everything. Or so I think. Then reality hits and I realize I am not pushed nor pulled in any one specific direction but I am spinning and the centrifigal force is just pulling my harder everywhere.
Maybe it’s because I am turning 30 this year I feel an extra push to make something of myself.
I am not sure I agree with her analysis of sitting back and seeing what I tell myself I want. Because I have been telling myself I want everything but not believing I could get it ever really.
July 13, 2006 at 12:50 am
Re: but
Sadly, I had plans for everything, ways to do everything. Or so I think. Then reality hits and I realize I am not pushed nor pulled in any one specific direction but I am spinning and the centrifigal force is just pulling my harder everywhere.
Maybe instead of trying to do everything. Pick one thing. Or do one thing at a time? Pick the middle ground… Instead of opting out completely or going full force (working full time and going to school full time is A LOT …I did that as well and it was sheer hell). I totally agree with Jhohanna’s advice, …too much stress is not a good thing for people like us. Take care of yourself and go about accomplishing what you like in an organized and step by step manner. Listen to your body and let it set the pace for you.
July 13, 2006 at 3:56 am
Re: but
Yeah. I am so afraid to fail. I have to admit that. I am afraid that if I don’t do the most fabulous thing ever, my whole life will be a waste. It’s so ridiculous to say. Because I have lots of half finished things. And I have never put my everything in anything because I am also afraid I will realize all of that hard work was for nothing because it is not the right thing to be doing.
I wish I had a guru or psychic. Actually, if I had a friend this might help.
My only honest to god friend is Eddie. Everyone else is an aquaintance. I don’t have enough in common with people my age to maintain friendships I think.
Or maybe I am just trying to save them the pain of losing someone they know. No, I used to do that. Now I just watch people. And stay out of all of it.
July 14, 2006 at 12:24 am
Re: but
“Or maybe I am just trying to save them the pain of losing someone they know. No, I used to do that. Now I just watch people. And stay out of all of it.”
We sort of have the same approach with this. Mine isn’t so much with friends …though at my age, after a move across the country and losing a best friend to drugs it has been really slow going. Getting better with that aspect though. My final obstacle is in the relationship arena.. I’ve been engaged twice and don’t have a problem finding people interested. I just worry about how much I can contribute to a relationship now physically (not just in sex) but also in pulling my share of the load and in that I’ll probably leave this plane before them.
A good friend of mine from back East told me years ago that you should leave it up to other person to decide whether it is a factor to consider… and I think that was a wise statement. As long as I am up front about my limitations I think it will be up to the other person whether they wish to increase the level of intimacy emotionally.
July 14, 2006 at 7:00 am
Re: but
so familiar what you are saying.
I have had several pieces of advice handed to me on this situation. One guy told me I shouldn’t tell anyone about my health issues until I was sure they had fallen for me. This made me feel really sneaky and strange to even imagine hiding it all..and I just couldn’t what I would see as “trick” someone into being with me simply because they couldn’t handle the truth earlier.
There are a lot of things I am lackluster with, and the sex? Well, E is afraid to kill me by doing it too much, no matter what. Three of the emergencies were post sex so I understand. We even have had hypothetical discussions on what would happen if I told my doctors what activity caused these all and they then decided to tell me no more sex.
I agree with your friend’s advice to a point. But honestly I don’t trust people enough to allow them the ability to make those decisions about their lives that directly affect mine. It is always a factor to consider, and maybe it’s not a situation that can be predicted fully…but I can tell you that if my current relationship ever ends in heartache, it will most likely BE attributed to my health situation and inabilities to be my actual age.
July 14, 2006 at 1:35 pm
Re: but
“…but I can tell you that if my current relationship ever ends in heartache, it will most likely BE attributed to my health situation and inabilities to be my actual age.”
The former there is no way out of… you can only do everything in your power to make sure it remains optimal by keeping your stress levels low, that means not always expecting perfection in applying yourself, doing things in moderation and organizing your priorities. Meditation would also probably be really good for you. It really isn’t a crock. I really think it would help. — I’m not sure if you said you do this or not already, forgive me. (Other types of “sex” ie oral/ maybe even tantric or a variation thereof? — might be beneficial too..seriously I’ve considered trying it. It might be fun :))
The latter you might be able to do something about. I would explore what you mean by “inability to be my actual age”. This would be great for you to do with your therapist because I think really it has to do with mindset and conditioning due to what you’ve faced.
Questions to explore might be:
How would you define someone else your age?
Do most people your age meet that definition that you know?
Why are you inable to be those things you define?
(not just your physical reality… what you think)
What would help you to feel more your age? Is it possible that you could?
I imagine that their will probably be a good bit of anger and frustration to work through in confronting those questions but after doing so you might find yourself feeling a little more your age… 😉
Be compassionate with yourself… and you will help him to help you.
July 14, 2006 at 10:46 pm
Re: but
“My only honest to god friend is Eddie. Everyone else is an aquaintance. I don’t have enough in common with people my age to maintain friendships I think.”
I`m gonna call bullshit
this is where you say, “Doug is gonna be an arrogant, self-absorbed asshole now”
1)I am assuming Eddie is your significant other by what I`ve read….and what I am about to say has nothing to do with him as he seems very capable of wearing the shoes you have layed before him……and for that, I respect him
2)You have chosen the wrong kinds of people to call or consider friends too often and it has caused you to feel hopelessness as to finding a worthy friend…..it`s like a job interview…..call it a friend interview…and don`t be discouraged when the “applicants” let you down later in life or were never up to the task to begin with……keep on truckin
3) wether you want to admit it or not, you seem emotionally unreachable
I get the sense there is this scared, hurt, little girl inside you….we`ll call her……hmmm……”Lil Blondie”
so Lil Blondie builds this tremendous wall around herself rivalling that of the Great Wall of China and she hides inside the protection of this huge wall feeling all safe and snuggly from the Cruel World and it`s Evil Minions…..so then Lil Blondie gets to feeling all lonely and shit and she throws a “message in a bottle” over the Great Wall from time to time in the form of LJ posts……I.E. ” Now I just watch people. And stay out of all of it”
“Or maybe I am just trying to save them the pain of losing someone they know.”
in that statement yer being Woman……women like to nuture whereas men like to conquer (and destroy if they so deem necessary)……women will tend to nuture everyone else in their lives AT THE EXPENSE OF THEIR OWN WELL-BEING….knock it off…..you DESERVE as much as you have given and it`s high time you start to require it…..even DEMAND it if necessary……women think if they put themselves and their emotional health first,that they are being selfish and needy……if that`s how you feel, then make a change….it`s OK to think of yourself and your needs FIRST and if you aren`t getting what you require,what you deserve, then Drop the fucking proverbial Axe
alot can be said of one`s image in a picture if the viewer chooses to (and has the capacity) to look deep enough….I peeked at yer other pic…..ya wear the scared, wounded little girl routine all over yer face…..those things you can`t hide from some people……you got a protective wall around you 18 feet high…….knock a hole in it……vulnerability is OK……you won`t die from it if you`re caught with yer guard down…….sure the shit hurts…..but then it`s over and it doesn`t hurt as much anymore
and for fuck sakes, Lil Blondie…..remind yourself that others should be worthy of your true friendship and love and not that you need to be worthy of THEIR friendship and love
July 14, 2006 at 10:47 pm
Re: but
“My only honest to god friend is Eddie”
Holy shit, Batman……do you realize the ramifications of that statement?
(I`ll bet you do actually considering you seem to be in tune and extremely intelligent and perfectly capable of introspection)
a)Eddie must be a kick-ass man….and I hope he always is that which you claim him to be….good for him…..at least one person is worthy to have the key to the only door in your wall
b) on the other hand, what happens if he does indeed “leave” as you say all the others have done?…….then you`ll do what?……I fear you`ll brick up the only door in the wall and be lost to the world FOREVER……which would piss me off in a big way enough to drive to Brooklyn and plant my workboot in yer skinny ass and pull you out of the dark recesses of that comfort closet you been hiding in…….moral is, you need others in your life to lean on besides Eddie…..not just via the message in a bottle thrown over the wall…..friends to hug you……friends to let you cry yer fuckin eyes out and get yer snot all over their favorite shirt because they are real friends (and I know you love NYC but that place is relatively unforving and fast-paced and driven….folks there don`t have time in their race-paced lives to stop for the slackers and pull them up from the depths of Hell)(sure there are caring folks there I`m sure, but in an overall sense is what I`m talking about)
c) it isn`t very fair to Eddie to lay all yer eggs in his basket, he is human and that`s a helluva responsibility for him to bear……He might be strong enough to carry that burden but damn, for E and for yourself, don`t lay all yer hopes and dreams, and expectations on him like that
I`m sorry Girlie, if I sound like I`m being judgemental…..but I kinda dig you…. and yer in a big FUNK right now and I want you to pull yerself out of it……the rest of us got yer fuckin back come hell or high water…..yer kinda like a bright little star whose gravitational forces pulled a big damn asteroid belt around you blocking out all the sparkly light
and if you tell anyone else that I`m secretly mushy or in touch with my feelings or emotions, I will deny it all…..I got a Rep to maintain……hahahahaha
YOU WILL WIN THIS
(because I`m arrogant enough to say so….and to hold you to it)
July 17, 2006 at 8:08 pm
Re: but
Doug,
You’re right on all counts. I have realized I make terrible choices for friends and that is something I have tried to rectify.
It’s something Eddie tells me all of the time as well so I know it’s not just you who says it. I have tried to stop shit talking people who have hurt me and just allowed them to be them without my judgments unless they really suck. That whole self-fulfilling prophecy stuff.
Emotionally I have no idea where I am so I don’t know how to let people reach me.
Either way I am trying to work on all of this shit now so it doesn’t mess my body up any more than it has.
And my walls were there long before the disease hit probably influenced a little from my parents treatment.
Though I do have to say that once you reach the age of accountability you cannot blame your parents for the fucked up things you do now in life. They can explain certain reactions but not the whole person.
July 13, 2006 at 1:42 am
Re: but
Maybe it’s because I am turning 30 this year I feel an extra push to make something of myself.
Ya know what? I so did not think I was going to make it past 27. I thought for certain I was going to pull a rock star and go out with a bang. Hrmph. I actually got clean, sober, and some perspective between there and 30, but just before turning 30 is when I quit my horrible job at the Evil V. So I was *gasp* unemployed. I don’t DO unemployed, as you can imagine. And I was sicker than a mofo, too, passing out all over the place, all kinds of crapola. I still quit. Ethics, ya know. Not only that, of course, it was the run-up to the Iraq war and stuff… and *blah* I couldn’t even get them to take me in the Reserves, and I had a lawyer draw up the craziest waiver, too. *SIGH* I wanted to serve my country more than anything else in the whole entire world. I’d give up all the years I trained horses and dogs to serve my country, but I can’t. I just *can’t*. So you can bet your butt, I had a full blown meltdown for my 30th birthday. I swear, D called the mental health people, but of course…no insurance. 😛 (not to mention that I did the best I could to wean off of a really screwed up Zoloft prescription – 600mg a day for STRESS … I should have sued his ass off) Let’s just say I thank the Gods each and every day I wake up that my husband has a degree in abnormal psych – as much as I hate it. 😛
But do you know what happened after my meltdown? I went on. I had to… I couldn’t give up anything not having survived everything I did… and I went out on that interview for that crappy desktop support job making $20 bucks an hour. And they hired me… on my birthday… and they paid me $22 an hour. It paid all the bills exactly and left just enough for an 1/8th of pot every two weeks. It’s all we could do. But the bills were paid, and we still had a roof.
We survivors have a unique way of making things happen for us. And your call to the Fates will be heard, darling… I’m sure of it. For now, you just keep doing what you do… just keep swimming. Just keep swimming. And things will happen for you. A little known secret…. Once you’ve made it to 30, you’re going to make it all the way. Well, at least that’s what they tell me. 1/2 of life’s battle is making it this far.
You may not be able to do what you want to do right now or right off the bat, but try to find something related, something on the path, in the way, something that will fulfill your heart and heal your soul. Even if you sit in your room and make bead jewelry and hock it online… it’s doing something you love no matter how small. That’s how I got going in IT. I didn’t do great jobs to stay in this industry… I did a lot of shit jobs on the side. Let’s see… the worst was working for *gasp* a startup Internet Service Provider run by a bishop in the Mormon Church. For 3.35 an hour plus 5% in the company. Only, there was no paychecks, and soon, no company. Hrmp… but I did it even still.. for the experience. I did get *some* money out of them eventually, but.
We’ll have to talk about that house in Colorado! We’re looking at land now… *GRIN* I soooo gotta get me a job back there, though. That’s the tough part. :}
July 13, 2006 at 4:00 am
Re: but
Ohh my. That house in Colorado makes me so happy to think about.
I need it. And a job would be good, too, but I am really drawn to my own business for that reason. (Owning one anyways).
I am still fixated on this idea that I am making all the wrong choices. That I would be good at many things. But how do you know the thing you choose is right? So many times I have been wrong in the things I have chosen. Which is why I quit every one.
eeek. It keeps me up a lot of nights. I have tried taking career counseling tests which basically end up saying I should be doing the thing I feel at that particular moment (it has ranged from school teacher to creative consultant to lawyer).
Bah. It’s too much already.
July 14, 2006 at 11:06 pm
Re: but
“Maybe it’s because I am turning 30 this year I feel an extra push to make something of myself.”
life has JUST begun for you youngun……..you`re ONLY 30??!!!
what push?……that push you speak of was INSTILLED in you as a child by your mother dearest…..and you choose to ride that train of your own volition
life isn`t about making something of yourself……..Life is about Living……Loving……and the wonderful and the painful experiences you have while living……..all in all Life is about LIVING….preferably, you`ll choose to enjoy it and look for the positives rather than dwell on the negatives….and who gives a fuck if you don`t become Prime Minister of Planet Earth?……you lived and you loved and you didn`t wallow in hate and disappointment and sorrow and pain
July 12, 2006 at 10:33 pm
disclaimer: The views and opinions as stated above do not reflect those of the host server nor popular professional psychological opinion and should be treated as such
Doug is somewhat arrogant and sometimes refuses to accept any opinions other than of his own creation
Thank you and Good Night
July 12, 2006 at 10:43 pm
ha!
It’s okay. This discussion was had with a therapist. I am not sure how I feel about the fact that I have finally backed down and started talking to someone who is apparently educated in dealing with people who are confused, like me?
I have always been too proud probably that I have never needed anyone to help me deal with my stuff. I have literally done all of this stuff on my own with very little input (at least input taken with any kind of grain of salt) from anyone.
So yeah. This is my third time seeing her since February. I am not proud of it, but I know I shouldn’t be ashamed either. I just enjoyed feeling very superhero like and invincible.
July 12, 2006 at 10:34 pm
and I read once you said that you usually pass out before 1 a.m.
what are you still doing up?
July 12, 2006 at 10:40 pm
hahaha
No. I pass out not long after 1 am usually. It’s not even 7 yet, geez!
July 12, 2006 at 10:51 pm
Re: hahaha
was speaking of your original post…..had no idea you were lurkin behind the scenes RIGHT NOW
and FUCK REALITY…..REALITY is more of a self-imposed set of restrictions and responsibilities than a conditon accepted by all humankind
I am sure when you finally die, nobody will say, “Damn, I liked her but she didn`t accomplish shit and she spent all her time dreaming and trying to make up her mind.What a total waste.”
Yer being a girl….a little too much right now……..hehehehehe
July 12, 2006 at 11:10 pm
Re: hahaha
That is probably totally true. I am being a girl.
Bleh. Sometimes I stay up late, tortured by my own brain.
July 13, 2006 at 1:44 am
Re: hahaha
ain’t *that* the truth! 😀
July 12, 2006 at 10:44 pm
Running one step ahead of death isn’t the worst of reasons for doing things…
July 12, 2006 at 11:11 pm
:::
Yeah. But I am thinking you can miss a lot thinking like this exclusively.
Like how to live, for example. I already know how it is to think you are dying, or afraid to all of the time anyhow.
July 12, 2006 at 11:27 pm
Re: :::
I do live that way in fear of age and failure.