re: Livvie

[Guest guest]

I am sorry you are going through what you are Livvie -- as well as your

daughter. I highly recommend both of you seeing a therapist together to learn

about how to work through this.

Pain does strange and unfortunate things to people -- such as altering their

mood, adding to depression & anxiety and the inability to 'cope' with every day

life. I commend you and your husband for taking care of your daughter after her

current surgery. I have to say, if she says she is unable to sleep, b/c of pain,

she is not lying to you, it's part of the condition -- especially after the

number of neurosurgeries she's had. I have insomnia due to pain/neuropathy and

have Rx medication for it, as no matter how hard I try some times I find myself

wide awake and in excruciating pain at 3am. It appears there are many separate

issues all being muddled into one -- your daughter giving up on herself and the

un-willingness to work on healing/helping herself.

First things first, your daughter needs to get into see a pain management

specialist who has experience with addiction issues. I am not saying your

daughter does, but if she's using her Rx to seek out narcotics for her boyfriend

-- that is a SERIOUS problem that needs addressing. By finding her a pain

management specialist -- she or he -- will be the sole prescribers of her

medications for pain -- versus her surgeon and PCP/GP.

Secondly, when she was discharged from Duke, this second time -- did her Nsg

write out a script for PT? If not, make sure she get's one and begins rehab. By

only being in the house, bed, couch, wheelchair -- she is not using her muscles

-- and this can lead to atrophy and or spasms/strain. Contact your local

visiting nurses/home health aide organization to get some MUCH NEEDED respite

for you and your husband. Maybe, she needs to go back into physical rehab

facility, to get her strength back -- both physically, mentally & emotionally --

some of these are linked with hospitals and offer day programs for patients --

allowing their care-givers some breathing room.

The only person who can change your daughter, is she, herself. No matter how

hard -- we may want to " change " people for the better, family, friends -- it is

not possible without willing participation from the affected person -- in this

case, your daughter. Have you contacted Health & Human Services? They usually

will have a listing of respite resources for families, and can put you in touch

with someone who can help.

Your daughter indeed has the right to be angry -- as this is part of the

grieving process -- she has been presented with a lot to cope with -- and MUCH

change. For her, things are not like they used to be. Medications, especially

narcotic pain meds can and will alter one's mood -- causing irritability,

lashing out, forgetfulness, foggy-headed confusion etc. A therapist can help

your family work on establishing boundaries with one another.

Do you have anyone you, yourself can talk to? Pastor, Priest, Rabbi, Therapist,

Friend? If not, please do.

I'm very sorry you are going through what you are Livvie. Please continue to

hang in there and make that call, for yourself.

Feel free to contact me off list if it helps.

--

>

> I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

>

> She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

>

> Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

> I know I am just her mother.  After all, he, the boyfriend, knows it all. 

>

> I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

>

> Thanks for allowing me to vent a little.  Now to the reason for the post. 

What are some ways that some of you deal with the pain, anxiety and other things

that go along with TSC, and does anyone know of a list for caregivers that might

be helpful?

>

> Livvie

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[Guest guest]

I do apologize for this, I did mean to ask, at the end of my last post, how

your daughter is doing at this point,

as my Post was quite delayed?

I hope, for both of you, that things have gone well, atleast enough to where

you both can see something positive

in regards to all of this.

Brande

mymocha@...