Ever heard of something called porphyria?

[Depression = 72% of members]

I'm not really new - I used to hang around this site years ago as lavameetssea, but I can't remember my old password and was sorta hoping that what with a decade of NC, my life had moved beyond needing this level of support.     My story is really long, complicated, and probably still lingering around here somewhere under my old spelling, but basically my mother has BPD, 4 daughters with 3 different fathers (I'm the eldest) and a history of both conducting, and being under, child abuse investigations.  (She was a LCSW before becoming the youngest's momager).  My father is a violent pedophile, which is something the military documented but failed to actually do anything about, and though my parents separated when I was four and he is unrelated to my younger half-sisters, one of the many reasons I'm also now NC with my full-blood sister is her exposure of those two half-sisters to my father at her admittedly supervised wedding, despite acknowledging that the incest was very real, and mostly at my expense.  She's also a drug addict and used to be a prostitute, but sadly I probably could overlook that if she hadn't been helping our parents keep tabs on me while saying things like "You know lava, you always did like to hold grudges - I've chosen to accept what I can't change about our parents," and "You're the one tearing our family apart," and "You know, I've heard much sadder stories at NA meetings."  I'm sure she has.  Since I am not and have no intention of ever becoming a heroin addict however, I went with therapy.  I was maybe 22 when my therapist made a connection between what we thought were psychosomatic complaints and exposure to my family.  She suggested space, they tried to sue her and hired private investigators, and that's the brief summary of an excruciating ordeal that I thought I'd eventually though expensively put behind me.

Except that it turns out it wasn't purely or even mostly psychosomatic.  There's a rare genetic blood metabolism disorder called porphyria that we're pretty sure is what accidentally almost killed me when I had my wisdom teeth extracted in November.  I've always been aware of certain sensitivities, like to sunlight, medication, alcohol, food preservatives, more pronounced in me but mentioned as family characteristics by my Hapsburg-descended paternal grandmother, and I've often gotten horrendously ill then spontaneously recovered since puberty arrived.  The fact that these random attacks of vomiting and untraceable pains tended to coincide with periods of intense, heightened emotions, like while dealing with my family, or even just PMS, made it easier to write off as not having its own independent physiological origin, especially when the medical tests were often intrusive, insensitive, and downright accusatory.  (You don't want to know how many times I've been asked if I'm bulimic.  Or accused of making myself sick.)  Still, if the puking got to a point where I was vomiting blood, or my legs were too spasmy for me to stay upright, or the tachycardia became erratic, I did have the sense to get to an emergency room.  Anyway, that's only been necessary three times before the minor dental surgery that turned into eight weeks straight of profuse, daily puking and indescribable pain.  I was in the emergency room in friggin January because I still couldn't keep anything down.  By sheer fluke I was in the tub one night, had to pee, then while on the toilet started throwing up into the sink.  I was clearly out of it because I rinsed the sink out but forgot to flush before sinking back into the tub, and when my husband came home I asked him why he'd poured our cranberry juice in the toilet, that's how purple-red my pee was.  I didn't know it, but it turns out labs I did in December also involved color-changing urine, but the local lab here is really incompetent because they didn't bother notifying anyone or following up on it, then lost my 24 hour sample.  Anyway, not all the foot-dragging is on me, but I went from being the one to suggest porphyria as a possibility after watching a TV show about royal hemophiliacs in April - and being skeptically humored by a physician who expected to find pancreatitis or an immune response disorder - to now he's extremely interested and I'm freaking out, because apparently all the other lab work is consistent, and everything else that might have contributed to the verified color change has been ruled out, so... .I should definitely be on top of the testing right now, and I am so very, very not.  I mean my doctor is actually calling me at home and I'm making excuses.  Until I get sick again, they probably won't find anything in my urine, but I COULD and probably should get a DNA screening done.  Like diabetes, there are two types of porphyria, type I being inherited and II caused by overexposure (usually heavy metals when it comes to porphyria).  Ultimately, the other labs just narrow the window for which type of porphyria and that helps find the mutation which cuts costs from an insurance company perspective, but I COULD pay for the test myself since otherwise I'm basically just waiting to get sick, and my doctor agrees that's bunk.  Inevitable given my history, but not something I look forward to, and prolonging this state of ambiguous ambivalence is just not healthy.  But that's what I'm doing.

Because if/when we find the mutation that causes my deficient heme production, that's when my relatives would need to be notified and screened.  Frankly they should probably be warned right now already, since being given the wrong medication might kill them, but I've been using the excuse that since I don't REALLY know anything, and they'd need my genetic profile to get screened themselves anyway, there's no point - even though my full sister is pregnant and over 35, and if she needs a caesarian or anything surgical, there's a ridiculously high rate of surgical complications even for properly diagnosed porphyriacs.  It's what killed Isabel Allende's daughter Paula, and I'm still recovering from nerve damage and abdominal pain that may be permanent just from being anesthetized at a dentist's office.  We're all supposed to get bracelets.

But one of the triggers for this disease is stress.  And whether it's a psychosomatic response to trauma, or an inherited inability to process the excess cortisol produced by stress, the fact is that being around my family has historically made me, quite literally, dangerously ill.  I'm 37 now.  It's been 15 years since I first officially asked for space, 10 since cutting off my sister and only talking through lawyers proved to them I meant it, and I've had at least a good 5 years of absolutely no harassment or interaction with any of them whatsoever.  Until a few weeks ago, when my mother resumed her use of private investigators to make sure she still has my home address.  After some incensed, retaliatory Facebook stalking on my part, it seems that my 20 year old half-sister is well, deliberately, I would say provocatively following in my footsteps.  She's living very close to me, at my old college, like me in a vegetarian co-op, and also chopped all her hair off and dyed it purple, etc.  Even though I haven't talked to her since she was 7, there's no way my mother wouldn't resent and blame me for all of that, and if she's also in the process of estranging herself, that might explain the renewed intrusions.  Finally, my youngest half-sister is 14 and back to making six digits a year in showbiz.  She was doing so on Broadway for a while, then Mom went to work for her agent, then the agent sent Mom to LA while having the kid stay in NY with a showbiz family.  Mom fired the agent, brought the kid to LA, and the kid's career tanked.  Now the agent is back and the kid is in NY while Mom is complaining about not seeing her for 5 weeks at a time back in LA, but she's making bank on a hit show and it's possible she might try to make some kind of Ariel Winter break for it or live with her father, none of which really concerns me personally, except for my mother being crazy and seeing it as a reason to lash out at me.  I don't want to get sucked back in.  I'm terrified of getting sucked back in.  Still, there's a part of me that would love to meet my half-sisters, and this would give me a good reason to contact the 20 year old.  But then what?  Is there any possible way that I'm going to get through this without needing IV fluids?  Because I'm just not confident, and that's paralyzing me, I admit it. 

Sorry for the length.  It's been bottling up for a while.  It's great to see the site again, in spite of everything.  Is it paranoid to think there must be a deity, because this feels too malicious to be random?  I mean seriously, if this were a plot device in a novel or a soap opera, wouldn't it just seem too contrived?  "Just when I thought I was out... .they pull me back in... ."  I get to tell my vampiric relatives that I have the vampire disease.  Sometimes I just can't help hating my life. 

[LavaMeetsSea]

I'm not really new - I used to hang around this site years ago as lavameetssea, but I can't remember my old password and was sorta hoping that what with a decade of NC, my life had moved beyond needing this level of support.     My story is really long, complicated, and probably still lingering around here somewhere under my old spelling, but basically my mother has BPD, 4 daughters with 3 different fathers (I'm the eldest) and a history of both conducting, and being under, child abuse investigations.  (She was a LCSW before becoming the youngest's momager).  My father is a violent pedophile, which is something the military documented but failed to actually do anything about, and though my parents separated when I was four and he is unrelated to my younger half-sisters, one of the many reasons I'm also now NC with my full-blood sister is her exposure of those two half-sisters to my father at her admittedly supervised wedding, despite acknowledging that the incest was very real, and mostly at my expense.  She's also a drug addict and used to be a prostitute, but sadly I probably could overlook that if she hadn't been helping our parents keep tabs on me while saying things like "You know lava, you always did like to hold grudges - I've chosen to accept what I can't change about our parents," and "You're the one tearing our family apart," and "You know, I've heard much sadder stories at NA meetings."  I'm sure she has.  Since I am not and have no intention of ever becoming a heroin addict however, I went with therapy.  I was maybe 22 when my therapist made a connection between what we thought were psychosomatic complaints and exposure to my family.  She suggested space, they tried to sue her and hired private investigators, and that's the brief summary of an excruciating ordeal that I thought I'd eventually though expensively put behind me.

Except that it turns out it wasn't purely or even mostly psychosomatic.  There's a rare genetic blood metabolism disorder called porphyria that we're pretty sure is what accidentally almost killed me when I had my wisdom teeth extracted in November.  I've always been aware of certain sensitivities, like to sunlight, medication, alcohol, food preservatives, more pronounced in me but mentioned as family characteristics by my Hapsburg-descended paternal grandmother, and I've often gotten horrendously ill then spontaneously recovered since puberty arrived.  The fact that these random attacks of vomiting and untraceable pains tended to coincide with periods of intense, heightened emotions, like while dealing with my family, or even just PMS, made it easier to write off as not having its own independent physiological origin, especially when the medical tests were often intrusive, insensitive, and downright accusatory.  (You don't want to know how many times I've been asked if I'm bulimic.  Or accused of making myself sick.)  Still, if the puking got to a point where I was vomiting blood, or my legs were too spasmy for me to stay upright, or the tachycardia became erratic, I did have the sense to get to an emergency room.  Anyway, that's only been necessary three times before the minor dental surgery that turned into eight weeks straight of profuse, daily puking and indescribable pain.  I was in the emergency room in friggin January because I still couldn't keep anything down.  By sheer fluke I was in the tub one night, had to pee, then while on the toilet started throwing up into the sink.  I was clearly out of it because I rinsed the sink out but forgot to flush before sinking back into the tub, and when my husband came home I asked him why he'd poured our cranberry juice in the toilet, that's how purple-red my pee was.  I didn't know it, but it turns out labs I did in December also involved color-changing urine, but the local lab here is really incompetent because they didn't bother notifying anyone or following up on it, then lost my 24 hour sample.  Anyway, not all the foot-dragging is on me, but I went from being the one to suggest porphyria as a possibility after watching a TV show about royal hemophiliacs in April - and being skeptically humored by a physician who expected to find pancreatitis or an immune response disorder - to now he's extremely interested and I'm freaking out, because apparently all the other lab work is consistent, and everything else that might have contributed to the verified color change has been ruled out, so... .I should definitely be on top of the testing right now, and I am so very, very not.  I mean my doctor is actually calling me at home and I'm making excuses.  Until I get sick again, they probably won't find anything in my urine, but I COULD and probably should get a DNA screening done.  Like diabetes, there are two types of porphyria, type I being inherited and II caused by overexposure (usually heavy metals when it comes to porphyria).  Ultimately, the other labs just narrow the window for which type of porphyria and that helps find the mutation which cuts costs from an insurance company perspective, but I COULD pay for the test myself since otherwise I'm basically just waiting to get sick, and my doctor agrees that's bunk.  Inevitable given my history, but not something I look forward to, and prolonging this state of ambiguous ambivalence is just not healthy.  But that's what I'm doing.

Because if/when we find the mutation that causes my deficient heme production, that's when my relatives would need to be notified and screened.  Frankly they should probably be warned right now already, since being given the wrong medication might kill them, but I've been using the excuse that since I don't REALLY know anything, and they'd need my genetic profile to get screened themselves anyway, there's no point - even though my full sister is pregnant and over 35, and if she needs a caesarian or anything surgical, there's a ridiculously high rate of surgical complications even for properly diagnosed porphyriacs.  It's what killed Isabel Allende's daughter Paula, and I'm still recovering from nerve damage and abdominal pain that may be permanent just from being anesthetized at a dentist's office.  We're all supposed to get bracelets.

But one of the triggers for this disease is stress.  And whether it's a psychosomatic response to trauma, or an inherited inability to process the excess cortisol produced by stress, the fact is that being around my family has historically made me, quite literally, dangerously ill.  I'm 37 now.  It's been 15 years since I first officially asked for space, 10 since cutting off my sister and only talking through lawyers proved to them I meant it, and I've had at least a good 5 years of absolutely no harassment or interaction with any of them whatsoever.  Until a few weeks ago, when my mother resumed her use of private investigators to make sure she still has my home address.  After some incensed, retaliatory Facebook stalking on my part, it seems that my 20 year old half-sister is well, deliberately, I would say provocatively following in my footsteps.  She's living very close to me, at my old college, like me in a vegetarian co-op, and also chopped all her hair off and dyed it purple, etc.  Even though I haven't talked to her since she was 7, there's no way my mother wouldn't resent and blame me for all of that, and if she's also in the process of estranging herself, that might explain the renewed intrusions.  Finally, my youngest half-sister is 14 and back to making six digits a year in showbiz.  She was doing so on Broadway for a while, then Mom went to work for her agent, then the agent sent Mom to LA while having the kid stay in NY with a showbiz family.  Mom fired the agent, brought the kid to LA, and the kid's career tanked.  Now the agent is back and the kid is in NY while Mom is complaining about not seeing her for 5 weeks at a time back in LA, but she's making bank on a hit show and it's possible she might try to make some kind of Ariel Winter break for it or live with her father, none of which really concerns me personally, except for my mother being crazy and seeing it as a reason to lash out at me.  I don't want to get sucked back in.  I'm terrified of getting sucked back in.  Still, there's a part of me that would love to meet my half-sisters, and this would give me a good reason to contact the 20 year old.  But then what?  Is there any possible way that I'm going to get through this without needing IV fluids?  Because I'm just not confident, and that's paralyzing me, I admit it. 

Sorry for the length.  It's been bottling up for a while.  It's great to see the site again, in spite of everything.  Is it paranoid to think there must be a deity, because this feels too malicious to be random?  I mean seriously, if this were a plot device in a novel or a soap opera, wouldn't it just seem too contrived?  "Just when I thought I was out... .they pull me back in... ."  I get to tell my vampiric relatives that I have the vampire disease.  Sometimes I just can't help hating my life. 

[Kwamina]

Hi LavaMeetsSea

It's been a long time indeed, welcome back here

Your childhood with a BPD mother and violent and sexually abusive father sounds very difficult and painful. I am sorry you've had those horrible experiences. It's very sad that things like this happen. You've come a long way since and have fortunately been able to put certain boundaries in place to protect and preserve your well-being.

Dealing with health issues is very unpleasant. I too have certain health problems, partly related to the stress caused by my uBPD family-members and partly unrelated. This condition you seem to have sounds quite serious. It's unfortunate that you until now have never gotten a proper diagnosis of what's going on with you. I can understand why the thought of this medical condition could cause you anxiety. Why do you feel you have not gone ahead with getting tested yet? Do you perhaps fear or worry about the outcome, perhaps because it then would be confirmed and real that you have this medical condition?

Dealing with health problems and stress often isn't a good combination. You've maintained your distance from your family for quite some time now, yet It's totally understandable that a part of you would love to meet your half-sisters again. No matter how you decide to move forward, I think proper planning will be helpful. I've selected some material about boundaries and communication techniques that I think can be helpful for you:

Setting Boundaries and Setting Limits

Communication: S.E.T. - Support, Empathy and Truth

COMMUNICATION: D.E.A.R.M.A.N. technique

Take care and I hope the resources can be of some help to you

[Harri]

Hi Lava.  Your situation is difficult for sure.  It must be hard knowing you have younger siblings still in the midst of chaos.  I went back and read some of your old posts and I am filled with admiration for how well you have done for yourself especially given your circumstances.  

I also read a bit about porphyria (I am a bit of a nerd like that) and it sounds very difficult as well.  I can relate to having a rare genetic disease and having to tell the rest of the family.  My situation was easier in that my family was very small and my uBPD mother is the one who cut contact with me (long story) though by the time I was diagnosed we were communicating a bit but only about little things like the weather and what not and our communication was quite frigid (and basically stayed that way until she died).  It was also 'easy' for me because my mother did respond to very hard boundaries.  She still raged and tried to get info about me and stuff, but nothing too bad.

I think sometimes we get overwhelmed when we try to look at such a big and complex issues and I have found it best to determine what the first step is, and then when step one is finished or in motion, go on to step two and so on.  So in this case, getting the genetic testing would be the first step, right (yes, I know you know that!   )?  I know for me, when I first got sick, the doctors were telling me all sorts of things that could be going on, none of them good.  When they finally honed in on some key problems I had, I did the genetic testing and sure enough had the mutation.  I found that knowing, finally getting an answer, was the most calming and stress reducing thing for me.  The not knowing was far more difficult in my case.  I'm not sure where you stand on that though.  :)o you find that having information is empowering?  

Anyway, I have been thinking about your situation and how best to break the news to the family (if you do indeed have the mutation and when the time comes) without getting sucked back in.  What about a letter?  Include a statement saying you feel compelled to tell them there is a genetic disorder they should be tested for, name the disease, maybe include some printed info about the disease, etc.  This would at least give you a bit more time to think about how and even if you really want to contact your younger sisters without the pressure of such a serious genetic disorder in the mix.  Would something like that work for you?

Kwamina gave some good links to read through and think about.  Boundaries for sure will help and in this case, since you have already cut physical contact you need to figure out ways to protect yourself on an emotional level.  I found learning about BPD and the various behaviors like splitting, projection and black and white thinking helped me to detach and I was able to stay emotionally uninvolved when dealing with my mother, even when she had a reoccurrence of cancer and then about 10 months later when she was dying.  I was able to take the knowledge I had and set up boundaries in my head so to speak.  

I will say though that when I was reading your older posts (not all of them obviously) I was struck by your understanding and grasp of the big issues we face with a BPD/disordered parents.  It sounds to me like you have done a lot of work and have healed quite a bit.  You just might be able to get in touch with them and not get sucked in.  It would be stressful, but in terms of losing all of the progress you have made and being sucked in?  I betting that won't happen.  

All I can say is keep posting while you work this through.  

[LavaMeetsSea]

   Thank you guys!

I think part of why this is so hard for me is that there is so much to it, and I lump it all together, get overwhelmed, and do the ostrich thing.  Porphyria is so rare that I honestly figured it was just a better way of grouping and describing symptoms I hadn't really linked, and that those connections would help us find something more common and ACTUALLY TREATABLE.  Part of me keeps thinking "What's the point of knowing you're diabetic if they don't have insulin?"  Which is so ludicrous, it answers itself, but I'm not going to deny that part of my response feels to ME like a childish tantrum against my own genetics.  Being the type of child that went on silent sulks as opposed to throwing things, this is absolutely a way of reverting to my old methods of NOT dealing.  You'd think being aware of that would make it easier to change, but um... .medical and dental issues are particularly triggery for me.  I won't even show up unless my husband comes with me, and even then I'm unusually spacey and cranky.  I have trouble remembering my own phone number and birth date when asked by someone in scrubs or a lab coat.  I know why, but I also know that thinking about why does absolutely nothing in the moment to make those experiences easier.  Mind you, this is after more than a decade of actively working on my self-care in therapy.  Course, the last few years have required practically weekly medical excursions, so yes, it's improved, and I really like my PCP and gynecologist and dentist for that matter, which is new and lovely, but I feel like I've depleted the already deficient stockpile of energy it takes for me to bluster through these appointments.

Something else I've been doing that's stupid is what I saw one of my diabetic friends do when she was first diagnosed type II.  I'm arguing with my body.  Take alcohol - I'm not supposed to and rarely do.  Porphyria itself has been compared to one big, long, undeserved hangover, at least biochemically, but depending upon what time of the month I drink, it's never quite processed itself normally in my body, and I've been actively teased about that since before college.  Before hearing about porphyria, I'd have maybe 1 drink a month, and maybe once a year I'd forget and have 2 and throw up.  Mind you, those two drinks wouldn't be chugged back to back, I'm talking a beer at a noon barBQ, and then a glass of wine that night at a dinner with friends at around six, would be enough to have me vomiting by nine.  Less than that if I'm PMSing.  So why on earth have I had like a beer a week this last month?  And been so weirdly observant about how long I stayed tipsy?  In an attempt to discredit the diagnosis I ate some candy I'd never have glanced at otherwise (I'm such a hippy about food) because it was full of a dye that I was told to stay away from, and because after being obedient for more than a month the combination of feeling deprived and yet healthier enabled my denial? I dunno.  That broke my two-months-without-puking streak.  I even tried to kid myself that normal people throw up too from candy and stress, but then I got bit by a mosquito a few days later.  It normally would have healed normally, but since I was still having a minor attack, it turned into a huge photosensitive blistering rash on my arm, which is of course a symptom of wait-for-it, porphyria.     I know this is not good for me.  The compulsive nature of my behavior worries me.

Mostly though, I really don't want to have to interact with either of my parents or my full sister again.  Like EVER.  Which is ridiculously unlikely, and why I didn't reach out to my half-sister when she turned 18, though she's made some incredibly considerate public overtures.  Factoring in what little I admittedly know about our family lineage and history, I'd bet good money I got this from the pedophile and not the borderline, but it's autosomal dominant, so strictly by numbers both they and my full sister would have a 50% chance of inheriting it.  Most people are lucky enough to stay latent and never know they have it unless they get surgery or get exposed to the wrong medication, and even then, the odds of the doctors knowing what's going on or why are not great.  Mostly though, I think the women at least on my Dad's side of the family HAVE been effected, we just didn't know how to prevent getting sick all the time beyond the family diatribe against taking anything stronger than aspirin or eating anything unpronounceable.  Like half of us have our own salad gardens, not just the anti-Monsanto liberals like me.  Though actually, I think we're all anti-Monsanto liberals.  Huh.  And I'm picturing at least three dozen relatives right now.  What's that tell you?  I don't know them all that well, but I remembered really liking my paternal aunts and cousins, and that before she died, my grandmother mentioned the same hormonal and thyroid irregularities that aren't enough to be causal, but are consistent with, porphyria.  So there is real suffering that possibly could be avoided with one phone call or e-mail.  Daily unexplained nausea that goes away when you listen to a Prohibited Drug and Food list, etc.  And I have a LOT of cousins.  Plus we're Hapsburgs, or were before great-grandpa embezzled money from Franz Joseph and found switching continents pragmatic.  There hasn't been a single generation of my father's family that isn't marked with suicides or estrangements since, and that was according to Grandma.  Anyway, DNA testing has shown the genes for porphyria in other descendants, specifically the kind that also has blistering rashes, so the more I learn, the more depressed and guilty I feel for not saying or doing anything.  It's just so inconsistent as a disease until you understand the mechanism of, and natural fluctuations in, heme production, so pattern recognition isn't enough to diagnose it or figure it out without a really, really big pattern to look at.  I mean, I get why so many doctors would miss this!  But I also get how bad the consequences can be and I am scared for my extended family and yes, if I receive confirmation that I have one of the mutations that cause it, I wouldn't feel contacting them was a choice.  My therapist, husband, and especially my in-laws seem to think this is optional, or at least that it would behoove me to see it that way, but I don't.  And that's daunting.

It's not that I fear some strange reversion to me being the person that asked for space 15 years ago, certainly not where my parents or even full sister are concerned.  What I fear is winding back up in the hospital while having to re-enact the same dynamic.  Because even if I send a note (I've written at least 3 practice ones) that effectively says "I'd rather die than see you again, but my moral schema requires I take the high road and notify you.  This is about my conscience, not any regard for you.  Please don't reply or ever contact me again."  My already re-acting up mother is NEVER, NEVER going to respect that.  Because I've just 1) admitted I'm sick, and with a disease commonly known as Mad King George disease because during an acute attack, we've been known to lose it.  This will completely and forever invalidate my opinions and perspectives to her, particularly the ones asking her to keep her distance.  She's my mother, and I'm sick.  Just typing that is freaking me out.  2) I've just shown regard for her personal safety.  I still love her!  Deep down I must want to reconcile!  Or would, if I had enough exposure to her and wasn't so sick, and 3) How can she determine any of this without seeing me directly herself?  Is that so unreasonable?  I couldn't provide a better mounting station for the attack she's about to mount on my sovereignity if I gave her a fully armed aircraft carrier.  Will I win?  Eventually.  Can I do it without needing IV opiates?  Not historically.  Sorta why I went NC in the first place. 

Finally, the other complication is that I have no idea what's going on with either of my half-sisters, not really, and I would absolutely be both more open and more vulnerable to them because of that.  I don't have the same barriers of burned bridges to psychologically warn me away, and given their youth and situation, I feel a great deal of sympathy.  Deep down, if I'd thought pursuing a relationship with the 20yo was a good idea, I'd have done so before now.  The disease actually makes it worse, because it takes the element of choice out of the dialogue on both my end and hers.  I'm not contacting her because I saw her on-line and liked her; it's because she might have a disease.  I'm not leaving it up to her to decide if she keeps our interaction to herself or not, or how we spend however much time we decide to spend together.  Her mother is going to be receiving, and knowing she is receiving the same info; she'll probably be interrogated under the pretense of having her genetic screening coordinated.  It may sound weirdly presumptive given how long I've been out of the loop, but the one who behaves most consistently (in her very inconsistency itself, mind you) is my mother, and her Facebook interactions with all 3 of my sisters - and the money-maker's agent - are very strange right now.  Someone - and it isn't the smiley pregnant heroin addict - is making a run for it.  She's probably paradoxically trying to prevent an alliance with me by reminding me that she knows where I live, has for some time, and has respected what she sees as our agreement of me not destroying her if the effort of doing so exceeds the effort of pretending she doesn't exist.  I specifically used those words, and a lawyer, and everything.  If something has changed that tacit agreement in her mind, then it's because something has happened and she at least suspects if not my direct involvement, then my indirect influence, and so I would absolutely be walking into the volcano at a time of extremely heightened activity.  The potential repercussions of dealing with whatever is going on with them on top of whatever is happening in my body feels debilitating.  I wish it didn't but just thinking about it gets me pukey.

Sorry about the length.  I am trying to work it out.  It's just a lot that I'd hoped I was done with.  I'm leaning towards asking secondary relatives to give letters to the first-degree ones; I actually have the 20 yo's phone number, and was thinking of soliciting her opinion regarding Mom and sis.  I have Dad's eldest sister's e-mail, from when she coordinated Grandma's funeral and she and another aunt spread the word about why I'm not in touch with him and protecting the cousins.  I don't expect much, if any, retaliation from him.  Part of me thinks it would be so much easier if he'd confirm himself as the source and then Mom's side of the family would never have to know, but either way my full sister would definitely tell her, so there's that.  I tried to see if my mother's older half-sister would intercede and she flatly refused, before commenting that expecting Mom to respect my boundaries after any announcement would be like swimming at the center of chum in Great White territory and expecting not to get bit.

I will be doing more testing and talking to my doc this week.  Largely to keep my therapist off my back, but if that's what it takes, I'll use it. 

 Kwamina and Harri.  I'm really sorry to hear you both have health issues too.  I just read Bessel van der Kolk's "The Body Keeps Score" and the links between childhood stress and adult health were so devastating that apparently the head of Kaiser Permanente broke down and publicly wept when he got the results of a massive study the book documents.  Rates of cancer, autoimmune diseases, and digestive disorders don't just double, they quintuple and then some depending on how much violence you were exposed to as a child.  But it's still perfectly legal to hit children in this country, heck they are the ONLY PEOPLE it's legal to hit outside a boxing ring, and more than 70% of adults do and consider it discipline.  Bewildering to me.  Sorry, my head's just all over the place.  How are you both feeling right now?  Not to ask if it's too private Harri, but was there anything having a definitive diagnosis made available for you that not-knowing but just acting as though it might be so, didn't?  Usually insight is my strongpoint; follow-through, especially if it involves something that feels "mean", is in person, or hits me by surprise is not.  I need my temper to stand a chance at enforcing boundaries, and I find it a lot easier to harness on other people's behalf.  I can muster a certain bravado in print or with practice or in the presence of someone I feel protective of, but I'm still not COMFORTABLE with it, and have actually fallen out of practice what with the no contact and the resultant lack of abusiveness in my life.  I guess in some ways being around borderlines is a little like living in NYC; there's a surface brusqueness and way of dealing that I've since shed in favor of a softer, more permeable way of interacting, and I don't really want to revert, but realistically that's what I'm going to have to adopt if I want to be understood.  Ugh.  Man am I indulging my self-pity lately!

[Kwamina]

Hi again LavaMeetsSea

How are you feeling today?

It seems like you are struggling with accepting that you might have this rare disorder. I do understand though, it's never easy to accept unpleasant things. We actually have an article here about reality acceptance skills that I think might also help you deal with this. Here's an excerpt:

Reality acceptance skills are the skills that you need when really painful events happen in your life. And you can't change the painful event.  You can't solve it. You can't make it go away. And, you can't turn it into a positive.  It's a negative that just won't become a positive.  And you're miserable.

When that happens, practice reality acceptance.

So what are you going to practice? First, you're going to practice accepting radically. You're going to want to accept that the event has actually happened. You're going to need to accept that there's a cause. It happened for some reason.  You may not know what the reason is, but there is a reason.

And, you're going to want to accept that you can move through it.  You can develop a life that has satisfaction, meaning and worth in it. Even with this painful event in your life.

In order to do that, you're going to have to turn your mind over and over and over.  When you reach the fork in the road, with pain in the middle of it, turn your mind to acceptance. Away from rejection.

And practice willingness. Practicing willingness means recognizing that you are part of life, that you are connected to things. But it's more than that. It's not just recognizing that you're part of life but it's actually agreeing to be part of life.

These are the skills of reality acceptance.  It sounds easy. Well, probably doesn't sound easy, probably sounds hard.  It is hard. It's really hard.

All of us are still practicing this. This is not one of those things you're going to get perfect at.  There's not going to be a day when you can say, 'Alright, I've got it; I've got it.  I can radically accept. I turn the mind all the time and I'm willing.'  That day is not going to come.

This is the only set of skills that I teach that I would have to say just about everybody has to practice just about every day of their lives.

The way to practice these skills at the beginning when they're really hard is to find small things to practice them on first.  If you start trying to practice on the really big things, you're not going to be able to do it.   So find something small. Practice on that.

The willfulness, notice it.  You could start by counting it. Slowly try to replace it.

Radical acceptance, notice when you are not accepting. You could start with counting it.  Slowly try to replace it.

Turning the mind, write yourself a note. Put it somewhere in your house.  Put it on the refrigerator. All you have to write is 'Turn the Mind'.  Put it up.  Try to practice it. Practice it every time you open the refrigerator.

If you keep practicing these skills, they do get easier. It's really the truth - they do. You'll get better at it. Life will get easier.

Alright, so those are the skills.

Radical acceptance - remember the word radical - complete, total, all the way.

Turning the mind over and over and over and over.

And willingness - entering life with willingness.

Now, I know that these are really difficult skills.  They, they've been difficult for me.  They are difficult for everybody I know.  And the facts of the matter are, every single person  I know is practicing these skills.

But I think if you practice them you'll find over time, may take a while, maybe slower than you want, but I think you're going to find them really helpful . The secret is, don't reject them right away. Don't reject them if you don't feel better right away or somehow your life isn't worth living right this minute.  These skills take time to work.  But, if you keep at it, I think they will work.

You can read the entire article here: Reality acceptance skills

I also get why just the thought of having contact with your family-members and informing them about your  medical situation, would cause you so much anxiety. You've been NC for a long time and that has allowed you to heal yourself. The NC also served as a protective boundary. This also meant that you didn't have to use certain coping skills and communication techniques anymore which however are necessary when you're still in contact with BPD family-members. That's why I gave you the links to those resources about boundaries and the communication techniques S.E.T. and D.E.A.R.M.A.N. No matter what you decide to do, it always helps to be prepared!

To help you calm down, not get too far ahead of yourself and stay in the present moment, I think exploring mindfulness can also be helpful for you:

Mindfulness is a type of self-awareness in which we learn to observe ourselves in real time to see and alter our reactions to be more constructive.

... .

How Do We Do This?

By paying attention to ourselves in real time. There are books written about this, but the short answer is to pay attention to yourself, observe yourself in a purposeful, in the present moment, and without immediately overlaying the old filters on the situation.

Here's a link to an article about mindfulness:

Triggering and Mindfulness and Wise Mind