Re: I just got another constructive criticism! HA!

From: Lin (j.vermey@xtra.co.nz)
Wed Dec 5 13:30:38 2001


At Wed, 5 Dec 2001, Karla wrote: >
>Cathy,
>
>This is great. I would like to change and add a couple things.
>
>The change would be from calling adhesions a "rare" complication to a
>complication that affects all too many people who have undergone surgery,
>with a number of these individuals suffering from disabling and life
>threatening side effects. I say this because I believe with Lin's family
>they would just throw it back in her face and say it's rare....no way Lin
>has it. Basically, Lin has my family. I have just learned to shut them out
>and give them limited access to opportunities where they can make attacks on
>me. They have gotten better over the years as they have seen me in very bad
>condition at times and I have heard word back that they didn't know I was
>that bad.
>
>The other suggestion would be to put a line about "when John and I have
>children they will have limited contact with family members because I don't
>want them exposed to the negative treatment of their mother. My children
>will be raised with love and nurture and will be taught to both love and
>respect in return. I want the time that I have with my children to be
>positive and full of wonderful memories."
>
>I don't think I have the wording quite right on that but you get my drift.
>
>--
>Karla
>
>Somewhere up in the stars..............
>My angel and me!
>
>http://www.geocities.com/karlasfamily2001
>http://www.geocities.com/princessd82000/BraydensHaven
>

>>>----- Original Message -----
>From: "cathy:-" <anonymous@medispecialty.com>
>To: "Multiple recipients of list ADHESIONS"
><adhesions@mail.medispecialty.com>
>Sent: Wednesday, December 05, 2001 3:26 AM
>Subject: Re: I just got another constructive criticism! HA!
>
>> Oh, boy, Lin, "denial isn't just a river in Egypt!" Your family is
>> seriously delusional about the extent of your injuries and your
>> prognosis.
>>
>> Here's my suggestion, which might not be a good one, but you can think
>> about it. Write a letter to your relatives. In it, make sure you
>> include the following things:
>>
>> 1) You are not sick, you are INJURED. What has happened to you is a
>> rare complication of surgery. If any of them have abdominal surgery,
>> whether for appendicitis, ovarian cyst, hysterectomy, c-section, etc.,
>> then they will be given consent forms to sign that include the
>> possibility that they can also be injured by surgery. Your advice is
>> that any of them faced with that decision think long and hard about
>> whether the surgery is necessary. Adhesion injuries can also come from
>> poor surgical technique, and so anyone requiring abdominal surgery
>> should make very sure that the surgeon is suitably careful not to put a
>> patient in any more danger than necessary.
>>
>> 2) Adhesion injuries are essentially untreatable. An acute
>> life-threatening complication of adhesions is a bowel obstruction. This
>> can be treated with surgery, at the cost of more adhesions down the
>> road. Surgery to cut adhesions can be done, and it will "work" for a
>> few hours. But then the surgery to cut the adhesions itself causes more
>> adhesions.
>>
>> 3) Your doctors have told you that you have perhaps five years left to
>> live.
>>
>> 4) Being subjected to large amounts of negative attitudes, stress and
>> criticism over extended periods of time have been scientifically shown
>> to weaken the immune system, damage vital organs and to amplify the
>> experience of pain. In order to maximize the time you have left on
>> earth it is important to avoid negativity.
>>
>> 5) Whether you live one another week or for another 60 years, you intend
>> to make the best of every moment and to make the best memories for John.
>>
>> Given all of those things, the following are the new groundrules when it
>> comes to dealing with Lin:
>>
>> 1) There will be no criticism of your abilities to engage in physical
>> activities. You have had 2 miscarriages that your doctors attribute to
>> engaging in activities that were too strenuous such as hanging out
>> laundry. You find the notion that a grandmother would badger her
>> daughter to engage in activities that have already killed two of her
>> grandchildren to be particularly revolting. [ok, maybe that last line
>> was was over the top as far as confrontational.]
>>
>> 2) There will be no criticism of your weight. You have no large
>> intestine, and your small intestine is prone both to shutting down
>> spontaneously for an unpredictable amount of time and prone to being
>> blocked by adhesions at any time for any length of time.
>>
>> a) Because of this you could face a crisis at any time that could result
>> in death by starvation. So you NEED an extra store of fat to carry you
>> through these times that you cannot eat.
>>
>> b) Also because of the severe damage to your digestive tract you have
>> little choice in the matter of what foods and in what quantity you can
>> eat. It is far more important to eat foods that will prevent
>> malnutrition, and if that entails foods that are too high is calories
>> than that's just the way it is.
>>
>> 3) Because of the extensive injuries to your digestive tract you are
>> severely limited in what foods you can and cannot eat. If your
>> relatives will not provide food that you can eat during social
>> activities then you will be forced to skip them entirely, or to come and
>> stay for a very short time.
>>
>> 4) There will be no criticism of your appearance. You are in constant
>> pain, and use large amounts of narcotics in order to bring the pain down
>> to a level that you can tolerate. Wearing comfortable clothes allows
>> you to use less medication. If you are having a bad day and just don't
>> feel up to it, or if the medications' side effects leave you too shaky
>> to do your hair or makeup then that's just the way it is going to be.
>>
>> 5) Likewise on those days when you find the energy to dress nicely, do
>> your hair and makeup, a simple comment about looking nice will suffice.
>> Accusations that you are faking your injuries because one day you put on
>> makeup will not be tolerated.
>>
>> I think that you should also detail all of the hurtful and unsupportive
>> things that your family has done or said to you over the years. Now
>> this is really important -- DO NOT include ANY opinions about what
>> ANYONE ELSE was thinking or feeling when these things happened. Say
>> something like, "Mom, last Spring when you said I was ugly because I
>> wore my sweats rather than the outfits you bought me it really hurt my
>> feelings. The waistband of those pants dug into my belly and they would
>> be agonizingly painful for me to wear." See, everything there is a FACT
>> that YOU know. Avoid saying something like, "Mom my feelings were hurt
>> because you were too stupid to know that those pants you brought would
>> be agonizingly painful for me to wear." Or "I can't believe that you
>> hate me so much that you would try to force me to wear clothes that
>> would be agonizingly painful to wear." See -- you don't KNOW whether
>> your mom is clueless or malicious or what. In fact, you really can't
>> know who in your family is malicious and who is clueless. Detailing
>> exact examples of inappropriate behavior that will no longer be
>> tolerated just avoids that issue. If they are clueless, then detailing
>> their appalling behavior in appalling detail should fix it. If they are
>> malicious then it makes it clear that you will no longer be messed with.
>>
>> Then you close by saying that these are the new groundrules of relating
>> to you, and that those people who are not willing to follow those
>> groundrules are not allowed to have any further contact with you. If
>> they plan to abuse John at your funeral then they are not welcome there,
>> either. [ok, that last part is a bit over the top, too...]
>>
>> And the last step of the plan -- don't just dash off this letter right
>> away. Go over it with John over several weeks. Other friends, too
>> (especially people whose opinions you trust who know your family.) Maybe
>> even run it past some of the people that you have met here. You are
>> drawing a line in the sand and telling your family that they will not be
>> permitted to step over it. You want to be very very very precise about
>> saying exactly what you mean and not any less or more.
>>
>> Ok, like I said, if this is a stupid idea, then just ignore it. If you
>> like part of it but not all, then simply take what you like and ignore
>> the rest. You and John know your family best and what will and won't
>> work...
>>
>> And another thing... If something happens to John, then your family is
>> your next-of-kin. If you are incapacitated, then they get to make
>> decisions about your medical care. Given your description of them, I
>> think this is a very bad idea. You should make sure that there are
>> airtight legal documents that appoint people that you trust (friends,
>> in-laws, etc.) as the people to make your medical decisions should
>> neither you nor John be able to.
>>
>> At Tue, 4 Dec 2001, J&L VERMEY wrote:
>> >
>> >Hey, it's me,
>> >
>> >My sister just rang. That was ok, it was nice that she took the time to
>give me a call - and I told her that I appreciated her taking the time out
>in her busy day.
>> >
>> >But she told me she is concerned about the fact that I am looking up all
>those things I am on the internet, she thinks it is not good to dwell on my
>illness! She doesn't want me getting any funny ideas! And that I need to
>concentrate on other things besides my illness. She doesn't think it's
>healthy what I'm doing and I shouldn't dwell tom much on the fact that I am
>ill!
>> >
>> >It's pretty obvious to me that they (my family) have no idea just how
>much my illness and my pain effects my life!
>> >
>> >I explained to her that I felt it was important that I educate myself on
>my illness, that I was simply unwilling to continue leaving my welfare up to
>my doctors she still seems to believe that the doctor is always right - and
>that I should do what they tell me to - explicitly - and without questioning
>it! I told her that in my doctors opinion I would probably be lucky to
>survive until I was 35 years old and that I'm 31 years old now, so that
>would give me only another 4 years! AM I SUPPOSED TO JUST LIE BACK AND
>ACCEPT THAT KIND OF BULL SHIT? NO WAY!!!! I REFUSE TO DO IT! I've got far
>too much to live for! I'm not ready to go yet, nor am I willing to leave
>John to cope on his own.
>> >
>> >I don't want to miss out on anything - not when I've already missed out
>on so much! And I want to make the most of my life!
>> >
>> >Right! That's done it - that's put the FIGHT back into me! (I guess I can
>thank my sister for that!)
>> >
>> >I will continue to go on the net to do my research - to find out all I
>can so that I can learn how to improve my quality of life, and make my life
>a little easier.
>> >
>> >And I've also decided that if I am in the family way - that I will not
>tell my family straight away - I'll wait at least until I'm 1/3 of the way
>along - that way I wont have to deal with anymore unwanted comments. And if
>later they get upset - I will tell them plainly - SORRY, BUT IT IS NONE OF
>YOUR BUSINESS, IT IS MY AND JOHN'S BUSINESS!
>> >
>> >Right! I feel SO MUCH BETTER!
>> >
>> >God bless little sisters!
>> >
>> >Love,
>> >
>> >Lin
>>
>> --
>> cathy :-)
>>

--
Again, thanks Karla,
You guys are supporting me so wonderfully!

I LOVE YOU!!!!

Lin


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