Author Topic: What do I tell friends?  (Read 12223 times)

Mei Mei

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Re: What do I tell friends?
« Reply #15 on: March 09, 2012, 06:21:08 pm »
I just wrote a long reply to all of you and when I went to post it, it disappeared.    I can't stay on the computer for too long because of my neck.

What I said it that it really hurts when people disappear and desert you.   My shrink told me that my daughters of tired of my problems I've had ever since they were little girls.   Even my husband in the divorce deposition said I had neck problems that he was tired of hearing about.   I have Ehlers Danlos Syndrome and so do my daughters and their children.   The children are even worse because they have cafe au laid spots on them as does my daughter.   What comes with all this is chronic pain and degenerative disc disease.    People just are sick of hearing about it.    So don't go to them.   As Jim said you are going through this process and are discovering who the keepers are.    I am having another brain surgery next Friday morning and don't feel good about it.   I have to get inside myself and take it.   Every surgery makes me worse with the exception of Dr. Ducic who fixed my pain on my head and my laparoscopy.     During that laparoscopy, the nurse wouldn't discharge me to my father who was panicking and called my poor daughter out of class in high school....she is now 34 and had her take the bus to Washington to be there to take me home.   It wasn't fair to her.   She was only 14.   I have an illness that needs a lot of care.   I also am recovering from an AN and the surgery next week is part of that recovery because I went to Johns Hopkins.

Keep the keepers and drop the rest.   Surround yourself with keepers and you'll be better for it.   I know AN survivors really understand where you are coming from so they will never disappoint you.   It is a long hard road we walk but we don't have to walk it alone.

PM to me and I will give  you a call when you need it.   We are all here for you.

Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Mei Mei

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Re: What do I tell friends?
« Reply #16 on: March 09, 2012, 06:30:20 pm »
I forgot to add what I had written on the post that disappeared:  This is the United States where you are expected to grieve in the official 5 days while in Taiwan, you are given 3 years.    Take your time in healing and surround yourself with people that will be there for you.    I remember back in the 1960s my father's friend's wife had breast cancer and no one wanted to sit next to her at dinner.   The same went for people with AIDS.   We've changed for the better over the years and it is my hope that we continue to do so.

I am in the process of writing my new will and my father's and making two Family Trusts.  It is painful to know that my daughters are sick of my illness and where should I put my money.   With them?   I don't know   They don't need me as much as I love them.   Where should I put my money?  With them in spite of their anger about my illnesses?   I'm not sure anymore.

It's a bad and painful place to be in.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Cheryl R

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Re: What do I tell friends?
« Reply #17 on: March 10, 2012, 07:56:26 am »
Mei Mei,   I would think twice about your trust and what to do when you are making the decision at a time of emotional upheaval.   You may feel different when things are less emotional.       I think many on here have had issues that their family can only take so much discussion of having the AN.  Your situitation is having more than this and have been thru way more than most.     Since your family is not the person actually going thru  what has been a very painful and up and down time,it could be easy to think they are not thinking of you.     Some people can only handle so much.        I would not give up on them completely and take each family situitation at the time it happens.       Having the care of your father has made it harder too for all you are going thru.         This is all my own opinion and you know your family better than me but just try to think of yourself now and the hope of less pain soon.    EVen that may make a difference in how you think and handle things.                     I wish you well and hugs to you.                         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Mei Mei

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Re: What do I tell friends?
« Reply #18 on: March 10, 2012, 08:09:25 am »
Thank you Cheryl and all.    Cheryl you too have been through so much.    I will hear your advice and take it to heart.    In the end, family is all I have.   I have to take good care of them in the best way that I can.   You are definitely a keeper friend.
Hugs,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

MDemisay

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  • Forever Thankful for Supportive ANA Friends!
Re: What do I tell friends?
« Reply #19 on: June 18, 2012, 11:25:28 am »
To all,

I'll tell them that the Gamma Knife treatment achieved the intended goal of killing the tumor(on June 11th)and that I am happy once more 8 days out. That in 99% of the cases 10 to 15 years out my Doctor has not seen a reoccurence. I will have to go for a CT scan yearly to monitor developments and will have to go for these for about 5 years! This is one happy Toastie Postie! Thank you Dr.Sisti.

Mike
« Last Edit: August 23, 2012, 03:07:26 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

 


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