Post-op blues

[wendysig]

Your sister sounds like a former frined of mine.  No matter what horrible thing happened to someone, her life is always worse, more challenging, etc.  You're right -- this pathetic behavior is a bid for sympathy and attention and such people refuse to believe ANYTHING worse can happen  to anyone else.  Your sister sounds like she needs help.  You shouldn't need to prove anything to anyone at this time of your life, they should be supporting you without question.   Friends and family who really know  and care about you will.  I understand your desire to bring your sister to see your doctor, but people like here will most likely refuse to believe the truth,  even when it's staring them in the face.  My advice is that it is not worth it to try to convince her of anything -- spend your time and energy getting better, that is the best revenge.

Wendy

[DLM4me]

In all the craziness with my sister's idiotic declaration, I forgot to mention something that Dr Stefan said the other day.  He's actually optimistic that my facial paralysis will resolve faster than we've been thinking.  I had resigned myself to a year, perhaps more, but he said that based on the function I had immediately post-op it's POSSIBLE that it'll clear up before that.  He said that when a patient has good function post-op and then it gets bad, the paralysis tends not to last as long as in a patient who wakes up already paralyzed.

I've also failed to mention that all of the doctors have done things to test my hearing (I don't mean a hearing test, per se, but other things to check hearing) and I DEFINITELY do have hearing!  I cannot hear sounds in the room, like the TV or a phone ringing, but if something's held directly to my ear I can hear it.  When I see Dr Brackmann again next month he may have a hearing test done if the blood and other post-op gunk have sufficiently dissipated by then.  Looks like my sister's declaration that I *CHOSE* the most difficult surgery--for no good reason, mind you!--is as idiotic as her "you didn't have brain surgery" comment. 

[leapyrtwins]

Great news about Dr. Stefan's optimism regarding your facial paralysis and equally great news that you can hear     

I envy you the hearing - although I love my BAHA, I still miss the days when I wasn't SSD.

As for your sister, all I can say is every family seems to have one - maybe not the same issue, but perhaps another.  As Kate said, you're not going to change her and you should use your energy for your recuperation.  Don't let her get under your skin; I'm sure that's one of the affects she's hoping for.

Best,

Jan

[epodjn]

MiMoore,
Please post the eye taping thing. I have to tape each night also but I can't seem to do it myself. My poor family has to do it and I would love to not have to ask them each night. Mine seems to be getting harder and harder to get shut because now the bottom lid is sagging and it's hard to get them to meet. Got any solutions? Thanks

[nancyann]

Hi epodjn:  Maybe I can help a little with the eye taping.   Recently my optholmologist said to use 2 inch wide 3M transparent tape - b/c it's a larger piece it holds down my eyelid much better.   I also have been & still use a product called:  NITEYE,  the dry eye comforter (bubble bandage) - it's a plastic bubble with adhesive all around it & works like a moisture chamber during the night. Medtronic sells it at approx. $28.00 for a box of 14 nonsterile (that includes tax & shipping).   Their tel.# is 1-800-535-4646, they will walk you through the process of getting a customer #, then the next day you place your order.   I have started taking turns at night with using the tape or eye bubble.
Hope this helps.
Oh,  I forget who it was but someone suggested the 3M soft cloth surgical tape, easier on the skin,  but I haven't tried it yet.

Always good thoughts,  Nancy

[Kate B]

The problem...well, PART of the problem!...with my sister is that she's actually telling everybody in our family these nonsensical lies. Of course *I* understand why she's doing it, i.e., she's basically having a hissy fit because I'm sick and she isn't (just how pathetic IS that, anyway?).  But certain relatives think everything she says is gospel and they're believing it.  I feel compelled to not only correct them but to put her in her place, and what better way to do that than to CHALLENGE her to come with me to tell Dr Brackmann that HE is wrong?!  Can you imagine anyone STUPID, self-centered and egotistical enough to tell *THE* preeminent surgeon for this type of brain surgery that it ISN'T brain surgery?

If you take anyone, you may want to take one of the "gospel" receiving relatives to reduce the "drama".  My guess is that even if you do take your sister, she will use information from the visit in an unanticipated way--such as selecting one statement that she can use to minimize the "brain tumor". 

Your energy is better spent on you and not giving her the permission to minimize your AN by debating her.  It appears that your sister likes drama and tries to make her candle burn brighter at your expense.  Stop the drama by breaking the "predictableness" of the reactions which is proving your case.  Instead go around that and if you want to "prove it" to anyone, involve someone else such as another relative  and ask them to come with you to Dr. Brackman.

Kate

[Lilan]

There is a semantic difference throughout the literature, so even reasonable people can disagree -- it's not surgery ON the brain tissue itself -- but surgery that requires a craniotomy and manipulating the brain, done by neurosurgeons, so close enough for most of us.

But arguing it with someone who is just out to provoke you would be about as productive as debating "Who's on first" or "Which came first, the chicken or the egg"!

On the other hand, fighting back on this point seems to have energized you some from your first post back, so maybe the brain stimulation of defending yourself IS helping! 

[MAlegant]

I agree with others that you should not be wasting your time or your ENERGY, trying to get your sister to change.  Let it go, let go of the anger, concentrate on getting better.
Best,
Marci

[DLM4me]

epodjn, we tried many different methods of taping and types of tape before I hit on something no one had mentioned: Band-Aids!  By using one Band-Aid HORIZONTALLY across my eye, it's a piece of cake taping it myself and it works like a charm.  I know it's hard to do it yourself at first but I assure you it can be done.  What I do is place my fingers on the outside of the bandage, over the padded part, and place it so the pad is directly over my eyelid.  Then while pressing it down I manipulate it so my eyelid is pulled down to where I want it.  Then I press down and secure the bandage in place.  It holds for a LONG time, and is [relatively] painless to remove.

Regarding my sister and the advice to not let her get to me, the comments about every family having one, etc....  It's just so INFURIATING that anyone--let alone a SISTER--would try to trivialize the profound, life-threatening, life-altering surgery I just went through.  I've written a letter that I'm going to send to her along with printouts from the places I mentioned earlier (NIH, UCLA, Natl Cancer Institute, et al).  My favorite part challenges, basically dares, her to come with me to see Dr Brackmann.  I would guess that there's...oh...ZERO PERCENT CHANCE that she'll take me up on it!  I just have to wait to hear the excuse she uses to get out of it. NO WAY does she want to completely humiliate and embarrass herself by telling the world's most respected surgeon for my type of brain tumor/brain surgery that *HE* doesn't know what he's talking about.  I would love to see his face, though, if she actually had the balls to do it.

[Kate B]

Regarding my sister and the advice to not let her get to me, the comments about every family having one, etc.... ..  I've written a letter that I'm going to send to her along with printouts from the places I mentioned earlier (NIH, UCLA, Natl Cancer Institute, et al).  My favorite part challenges, basically dares, her to come with me to see Dr Brackmann.  I would guess that there's...oh...ZERO PERCENT CHANCE that she'll take me up on it!  I just have to wait to hear the excuse she uses to get out of it. NO WAY does she want to completely humiliate and embarrass herself by telling the world's most respected surgeon for my type of brain tumor/brain surgery that *HE* doesn't know what he's talking about.  I would love to see his face, though, if she actually had the balls to do it.

Your anger is deep and it comes through in your post . For your health and well-being which seems to be rooted in getting your sister's admissions and approval, I hope she changes her tune..

All the best,
Kate

[leapyrtwins]

You may want to put that letter away for a week, let your anger subside, and then reread it before sending it to your sister.

As infurating as she is, adding fuel to the fire might not be your best option and things said in anger aren't easy to take back at any point in time.

Just a thought,

Jan

[sgerrard]

DLM4me:

Here is what you should have said in that phone call with your sister: "Oh, of course you are right, my dear sister. It was just a slip of the tongue." When with other family members, look at them and roll your eyes expressively.    As long as you attribute some significance to your sister's opinion, she wins. As soon as you ever so politely and kindly dismiss it without discussion, you win. You will be tempted to say "that's what the doctors call it," but that should be directed at other family members in her presence, not at her directly. In the end, the patient who went through it, and her doctors, will carry the day.

You can get past this one. 

Steve

[DLM4me]

I know, I know...  It's just that I've been annoyed FOR YEARS at the way she plays 'the sick one' ALL THE TIME, yet she's never actually had any real illness.  She wouldn't know how to cope with REAL illness.  And, again, it's incomprehensible to me that she's so desperate for attention that she's stooping to these new, despicable lows.

Anyway, I'm wondering about resuming driving.  *I* want to believe that a month from now I'll be driving again, but I have nothing to back that up.  Certainly my doctors haven't suggested that that's even a possibility, but I want to believe it.  Considering my ongoing, constant vision issues (inability to focus, plus the occasional return of double vision), and the ongoing dizziness, am I being ridiculous?  Is it possible that I'll be well enough a month from now to drive?  (I know no one here has a crystal ball!)

[Kate B]

Hi again,

Everyone recuperates at different rates and you will know if you are ready. It is the needing to turn your head when changing lanes that will be the benchmark.  I also remember being startled by semis swooshing by me.

I was able to drive at 5 weeks, but I didn't like driving at night at first.

I hope this helps.

Your body will let you know when you are ready.

Kate

[suboo73]

DLM4me:

Here is what you should have said in that phone call with your sister: "Oh, of course you are right, my dear sister. It was just a slip of the tongue." When with other family members, look at them and roll your eyes expressively.    As long as you attribute some significance to your sister's opinion, she wins. As soon as you ever so politely and kindly dismiss it without discussion, you win. You will be tempted to say "that's what the doctors call it," but that should be directed at other family members in her presence, not at her directly. In the end, the patient who went through it, and her doctors, will carry the day.

You can get past this one. 

Steve

Hi DLM4me!  I read your thread earlier this morning but didn't have time to comment until now...
A similar thread was started under "Cognitive/Emotional Issues"= see this thread if you are interested:  http://anausa.org/forum/index.php?topic=9010.0
(I have a relative who told me, oh well, we are all getting older - geez louise, i didn't ASK for an AN, and neither did my sister!)

I believe, like Steve, that you will get past this one.  After all, no one else knows what you have been thru until they have 'walked a mile in your shoes.'

May you have continued strength to get through your physical health issues and the wisdom to focus your energy on yourself and those who truly care about you.
We care - we are here for you.

My thoughts and prayers are with you.
Hope you eye gets better in the coming days.
Keep us posted.

Sincerely,
Sue