Author Topic: What do others do When you get down on all that has been going on?  (Read 7460 times)

mojwri54

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I have operation for a large AN that was starting to grown into my brain stem about 3.5 years ago. I lost my site and hearing on right side and paralzed partly.  Then about this time last year the small part they could not remove but cut off the blood supply picked up another blood supply and started growing again.  I had CK at Georgetown University Hospital little over six months ago.  I was two see the doctor in Feb which I did but they made a mistake and did not have me have MRI before hand.  So  I scheduled that a week later there was a mistake in getting the imagine to the doctor, till this past week.  I am waiting to hear back what is up.  So far I have not had many head ached (a few) now the allegries and sinus season here, My balance is bad (sometimes I feel like I am walking drunk) which I know I am not drunk! .  I am praying for good results.  Lately I feel little down, like crying which most of time I don't but today I have been in tears for no apparent reason. I think it is everything that has been going on the last 4 years with AN, back, knee problems. and work has been pressure on me since December (not because of the AN, they have been great on that), a new co-worker (which when contract ends in late fall she will not be renewed she is lazt, and not on maternity leave tilll end of May (so I am basically handling twice the work).  Everyone at work depends on me and relies on me to get it done and know the answers. Part of the pressure at work I but on myself which I have to say to myself I am not a superwoman. 

I have no real support here in area my sisters are great but 4 hours away and don't understand sometimes, it is like I should back to normal.  And I hear will we are 7 and 10 years older then  you.  My closest friend is about the same as them but she has come around more since she seen me one Sat when my balance was really acting up; and we were going some where, she said you feel like going, I said yes.

I just don't know what to do when I feel like today down  and want to cry but I don't want to show that side of me.  I have been mostly upbeat in this.  What has others done out there when they get down (which I am sure they have). 
Thanks for listening to my rumbles I needed to get it out to others that would understand.

Suu

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Re: What do others do When you get down on all that has been going on?
« Reply #1 on: March 18, 2012, 12:33:27 am »
You poor thing!  I wish I was there to hug you so please accept a cyber hug ((((((( :D)))))))

I still get a bit down in the dumps and feel like crying and sometimes I just have a bit of a cry and let it out.  Other times I do something like cleaning or doing laundry.  Other times I watch something funny on TV.
Another thing I'm trying to do now is to knit large booties for the elderly people at the nursing home near us.

Do you knit or crochet?  Do you have any hobbies that you may like to try?

Lovenhugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

Tod

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Re: What do others do When you get down on all that has been going on?
« Reply #2 on: March 18, 2012, 06:58:42 am »
I am really sorry to read about your struggles.

My attitude has always been that things could always be much worse for me. As long as I wake up each day, I have a chance to accomplish something. As long as I have a home, am not working/living in a place where I get shot at, have a job, and all the associated little things, I can deal with this tumor and most anything else.

Also, after having watched essentially helplessly while my wife and sons had their own issues, it is much easier on me to be the one with needs than others.

Occasionally though I have to take time to let it out and be sad a bit. There is absolutely nothing wrong with that. Grief and sadness are a natural part of this experience. What you don't want to happen is to allow them to become a daily habit. Life is as good as you make it.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: What do others do When you get down on all that has been going on?
« Reply #3 on: March 18, 2012, 01:21:30 pm »
I don't think that anyone going through this AN experience can stay upbeat all the time.  For me, it is important to acknowledge when I am down a bit and let those around me know what I am feeling.  That in in self can help me to feel better about it.  I also agree that we have to somehow look at the bright side of our situation.  That can also be hard, but knowing that the situation could be worse somehow makes me feel better.

Tomorrow will be another day and hopefully it will be better for you.

TJ

MDemisay

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Re: What do others do When you get down on all that has been going on?
« Reply #4 on: March 20, 2012, 01:34:13 pm »
Hello-

It can be a difficult process to go through most of us will tell you that for sure this forum can provide an excellent means of self expression. Please feel free to discuss your frustrations here!

 You have to have an outlet for your emotions once in a while. Friends and family can only be so supportive but after discovering that they may be less than sympathetic, you have to have a "soft pillow" to land on! ANA= soft pillow=relief!

At least that's one man's theory! (My own)

I also see a professional therapist once a week and he has said that interacting online with a group  provides almost instant access to relief!

Mike
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!

Mei Mei

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Re: What do others do When you get down on all that has been going on?
« Reply #5 on: May 12, 2012, 08:56:40 pm »
I'm sorry that I am just reading this tonight as I've been mostly off recovering from my March surgery and my neck problems keep me off.

Frankly after much disappointment a while back I've come to the realization that the only people that I can really confide in is all of you.   You just know immediately where we are without any explanation.

I had a bad experience two days ago when I heard my daughters deciding that I have
"Borderline Personality Disorder"   They are not doctors and how can they say such a serious thing about me.   How did they come up with such a conclusion.   It is certainly a long hard road we walk here and most of the time alone.   I even took taxis to the surgeries (2) in the past year to recover from the one two years ago at Hopkins.   All these life changing decisions are on us and we have very little background to make good decisions.   We go with our gut and which doctor we believe.

Hugs to all of you.
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

Tod

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Re: What do others do When you get down on all that has been going on?
« Reply #6 on: May 13, 2012, 03:25:52 pm »
Oh, Mei Mei, my first wife was diagnosed with Borderline Personality Disorder by professionals. I've met you and read your posts and I just don't see a comparison and that marriage was a truly horrible experience. Clearly your children are not understanding your long-running health issues.

I hope you have had a better Mother's Day than this story would indicate.

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Mei Mei

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Re: What do others do When you get down on all that has been going on?
« Reply #7 on: May 17, 2012, 09:27:44 pm »
Tod,
I am so sorry that you went through this with a first wife.   My cousin came here in March with his little daughter without telling me that he had a crazy wife.   She insisted he come home right away when he told her he was staying at my house and then she jumped on a plane in Chicago and I drove him to the airport to get her to finish out his stay here to see DC.   There were horrible emails to me and voicemails cursing me on the cell.   I've never been in this situation before and this was the first I've ever heard of this disorder.   Then my daughters started saying the same was for me.   What a disappointment.   Anyway, they've been talked to and hopefully the attitude will change.   It's just a reminder that I canon show my feelings to non AN people.  They just don't understand and begin to say you have a problem.

I went to an Ehlers Danlos doctor nearby and he wants to take out my C 3-4 and 4-5 and cut c 2.   It's a big surgery and I've had 3 in the past 2 years not to mention the passing out and going on life support at Cleveland Clinic.   I am going to a memory Clinic and trying to find out why I am having the memory issues that I do and the pain that persists.   I thank you immensely for being there in the past.
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

Kathleen_Mc

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Re: What do others do When you get down on all that has been going on?
« Reply #8 on: May 19, 2012, 12:31:47 am »
[
I had a bad experience two days ago when I heard my daughters deciding that I have
"Borderline Personality Disorder"   They are not doctors and how can they say such a serious thing about me.   How did they come up with such a conclusion.   It is certainly a long hard road we walk here and most of the time alone.   I even took taxis to the surgeries (2) in the past year to recover from the one two years ago at Hopkins.   All these life changing decisions are on us and we have very little background to make good decisions.   We go with our gut and which doctor we believe.

Hugs to all of you.
Mei Mei
[/quote]



Mei Mei: Do you daughters even know the meaning of "Borderline Personality Disorder?".......(have you looked it up yourself?). I really don't think they do.
It is so sad that your daughters are not supportive of you in your health issue's, it must really hurt.
I remember when I was first ill and being mis-daignosed, my sisiter refused to acept there was anyuthing wrong with me and then while I was W&W she kept saying "you won't ever have to have it out again", it really hurt but in the end I see the problem is something within her not me.
Take care of yourself
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Mei Mei

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Re: What do others do When you get down on all that has been going on?
« Reply #9 on: May 19, 2012, 07:28:45 am »
No, they don't and neither did I.    I looked it up on Google and that's not me.   I agree that I am very anxious from all these health problems and yes, it does hurt.   It make me sad especially when I hear them talking on the phone to each other cryptically about me.    I also have fibro and endometriosis and Ehlers Danlos Syndrome which is like a curse and now having the head opened up three time has been difficult.   One daughter came for the surgery in Hopkins but the other surgeries they didn't come.    I went by taxi and a neighbor took me home.   Cheryl who is a nurse in Iowa said this is more common than you'd think.
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 others do When you get down on all that has been going on?
« Reply #10 on: May 19, 2012, 07:46:13 am »
Mei Mei, Hard as it is just try to ignore their views.     The more worked up you get on what they say will make them decide even more that yes that is what your problem is.     You know and we know what a hard time you have been thru.         If there is any kind of service in your area that can give you a helper for when you need someone to take you and stay there with you,then go for it.      I have heard of such in larger cities.        I do it for an older lady friend who has no family in Iowa and has 3 major surgeries in almost 2 yrs.          We have a county transportation bus service in our county which takes mostly older to where ever they need to go.     Mainly are in wheelchairs and that is they get to the dr and hospital as we have specialty clinics also.      Plus even to be sent home as some pts we have are in nursing homes.      They may come by ambulance but not back that way.                           I know you wish family could be with you for every time of hospital visits but it looks like that is not in their views.    If you push it less than maybe they will be of more help in time, who knows?       We all want our family very involved but with them with small children and busy work life, does not always happen.
                                          Hugs and know we do think of 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

 


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