Messages By: pandas

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January 4, 2006, 4:17 pm PST

Living with MS

Hi, 3 years ago I had everything anybody could want, work, car and money.  3 years ago I had collasped while getting up to go to work.  The past 3 years has been a battery of tests and Doctors.  My life did a complete 360 on me.  I went through alot of emotions, I had no idea what was happening in my life that could bring me to a halt as this did. Ofcourse going through the motions of day to day life I came to the point that there was nothing left of me that is any good.  My friends seemed to disapear from my life bit by bit.  During that time I was very cold, I was tired, no one could tell me what had happened.  So I am sure your guessing this next part...Yes I had tried to commit suicide not once, not twice but 3 times which put in the hospital under suicide watch. From the hospital I went into a group home I was there for 2 years. I had no one left in my life except my mom and my sister, the only problem was my sister has her own life with her husband and grown up children and grand children, and my mom well she is in her 70's.  So there wasn't much that they could do.  I had a hard time bathing myself, and because I didn't go anywhere it didn't matter to me that i was always in my jogging pants or jogging shorts.  I used to be very athletic and very tiny  as in (size 2) and now i keep gaining weight and losing weight because I can no longer walk,  I can not get my self comfortable. and to beat all things I just moved to my handicapped apartment.   I was just diagnosed with  MS in early October, 2005.  About 3 weeks ago I found myself trying to get out of bed but it felt like someone had tied 10 ton weights all over my body.  Thank god that I have a loaner wheelchair from the same place as I am getting mine.  I had to litterly fall out of bed (because I had my crutches but  I could not use) and drag my self in to the living room of my new apartment.  I have now been in my wheelchair for 3 weeks.  This is the hardest thing I have ever done in my life.   

 
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January 4, 2006, 5:26 pm PST

helpless

Quote From: helpless24

I have been posting on this and other boards for quite sometime and have noticed that not one person in here cares enough to offer suggestions or to talk to me and help me cope with everything I'm going thru  so I have to ask AM I not wanted here ? do I have such a disease that everyone is afraid to talk to me?

Hi Helpless, my screen name is pandas.   If you want to talk to me then maybe we can help each other.  Can you tell me your problems and even if i can't help.  sometimes just talking and letting out your frustations is all you need.  please write me back maybe we can help each other. 

  

Pandas 

  

 
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January 5, 2006, 7:17 am PST

xplay25

Thank you xplay25 for your input.  The information you provided, it is already being done.  I also have menieres which will soon become total deafness. With this problem I can not have salt, artificial sweetner and alot of other things. 

  

pandas 

 
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January 5, 2006, 7:32 am PST

living with MS

Hi Prof, there is no cure for it except for a really drastic one.  There is no thearapy that can help this pain.  I actually did reach out to 2 of my friends, but they have no idea how to react to me in a wheelchair.  That hurt.  Basically my family is all I have, and my family has their own life.  The reason they looked in the right direction is because I have been begging for a MRI I knew there was something wrong.  I also have fibromialga and that is from a fall I had when I was 14 (fell 9.5 feet in gymnastics)  I knew from an early age that I will get fibromialga.   Over the years I was always on crutches for about a week or two.  For me that was normal.  So when this happened I knew it was different.  I also knew that it was going to be perm.  That was the feeling that I had and no one believed me of how I felt,except for my family doctor.  She has been the best to me.  I would call her because I needed a shoulder to cry on.  It didn't matter what I needed she was there and she still is.  When I told her that something is really wrong, she believed.  My doctor did all the phoning for specialists, wanting updates etc. That is mainly the only reason that I am telling my story so that other people in the same or different problem can come together.  Sometimes all we need is to know someoone is listening 

  

pandas 

 
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January 5, 2006, 6:27 pm PST

living with MS

Quote From: pandas

Hi Prof, there is no cure for it except for a really drastic one.  There is no thearapy that can help this pain.  I actually did reach out to 2 of my friends, but they have no idea how to react to me in a wheelchair.  That hurt.  Basically my family is all I have, and my family has their own life.  The reason they looked in the right direction is because I have been begging for a MRI I knew there was something wrong.  I also have fibromialga and that is from a fall I had when I was 14 (fell 9.5 feet in gymnastics)  I knew from an early age that I will get fibromialga.   Over the years I was always on crutches for about a week or two.  For me that was normal.  So when this happened I knew it was different.  I also knew that it was going to be perm.  That was the feeling that I had and no one believed me of how I felt,except for my family doctor.  She has been the best to me.  I would call her because I needed a shoulder to cry on.  It didn't matter what I needed she was there and she still is.  When I told her that something is really wrong, she believed.  My doctor did all the phoning for specialists, wanting updates etc. That is mainly the only reason that I am telling my story so that other people in the same or different problem can come together.  Sometimes all we need is to know someoone is listening 

  

pandas 

Hi Prof...the drastic cure is very drastic, it is a 50/50 chance of survival.  This cure is to go to the hospital, get your bone marrow taken out, cleaned and separated, then go on a long 3 months in isolation during your chemo, the last part of this is if your liver doesn't start to work then you are dead, if it does work, then you live.  At this point, my liver is already in danger, so i couldn't go for that cure even if i wanted to.  If my liver, gets better and that cure is available I just might do it.  I live in Canada and we have a bus that is called "para transpo".  This is the bus that i take to my appointments.  The only problem with the bus is you have to call 1 day ahead, and that becomes very frustrating.  The phones are always busy.  My sister is the only person that drives and she has the car only on her day-off which is always monday.  the other days of the week she works and her husband takes the car.  My mom no longer drives as she feels at her age she doesn't need to drive.  I have tried and tried to get a couple of my friends over but they always say  "I'm busy or I got called into work" etc..Its very disheartening.  I get that same answers from my sister, she promised the grandchildren, or she promised on of her kids.  I ask her in advance and I still get put to the end of the line for when she has time. 

  

pandas 

 
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January 6, 2006, 11:25 am PST

Hello Everyone

  

I just wanted to let you know if you want to read more of what has happened to, I am writting a shared diary called "Everthing in me"  If anyone does read it I would love some feedback on it. 

  

Thanks pandas 

 
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January 7, 2006, 10:09 am PST

Disability

Quote From: katlover

And I am so happy I stumbled on it. Very nice to meet you all! And sorry it is under these circumstances. I won't bother repeating here a long list of diagnosises just refer to the first page of my dairy. LOL 

  

I had no idea that so many people of varying ages and countries were living with chronic pain and/or illnesses. I should have known since it is so hard to get an appointment with my pain doctor and the glimpses I have had of their patient file room.  

  

I want to go back and read every post since the beginning so I can get to know ya'll. Could I ask a favor so that I can understand the posts better? Would it be okay to ask that people insert paragraphs in their posts? I have trouble concentrating and when there is no paragraphs I get lost and don't get the gist of what the poster is saying. And I want to! 

  

Anyone else here who has applied for total disability through the Social Security Administration? This has been a night mare ever since I applied on July 7th this year. I just don't know what to expect and the government doesn't make it any easier to understand either. So all input about this subject will be greatly appreciated! 

  

Take gentle care, 

  

Katlover 

Katlover,  

  

if you would like to know more about your disability you can read my diary (everything in me) this will tell you (in canada) how long it took me to get my disability.  Let me know once you read it, if it helped with your question. 

  

pandas 

 
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January 7, 2006, 6:05 pm PST

Custody

Hi,  

  

I was married to a divorced man, he had two daughters.  One thing that I did to make the transition easier (we had them every second weekend).   I was friendly with their mother.  The one thing that I appreciated was once the girls left their house, their mom would not do anything.  There was one weekend they came over and it was snowing so I called the girls and told them to bring their snow pants.   They forgot them and I told them that they couldn't go out, their mother was there and they turned to her and "mom its not fair"  she just told them that I did call them and tell to bring their snow pants so as far as she was concerned she just turned her head and said "I'm not here" you deal with what you did" and then she left.  So during the time that we had the girls over, sometimes their mother stayed for dinner, sometimes not.  I found that once you put you feelings aside, you can make things a little bit easier for the children.   Just remember its not you or your ex that is hurting....ITS THE CHILDREN.    You have to find some way to get along for the children's sake....please 

  

Pandas 

 
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January 8, 2006, 6:23 am PST

Custody

Quote From: robbie_sue

Pandas,  

I admire you! In my case, I am the mother (the ex)  with 2 kids. My ex and his wife live out of state, but they are regularly involved in the kids lives. And the one thing I have tried to do is always be friendly with their stepmom. Initially, it was just because I did not want her to take any resentment she may have of me out on the kids. And then, when I saw how relaxed and happy it made the kids to see us getting along, it just became natural. We joke, we laugh, we eat out together, we sit together at the kids sporting events, we have even been thrift store shopping and prom dress shopping together! I buy cards and gifts for the kids to give her for special events. Once when there was a problem with one of the kids, the four of us (me, ex, stepmom and child) sat down and talked it out as a single family unit.  Just this past week, when I met their stepmom to exchange the kids after a week long break, I spontaneously gave her a big hug and said "Happy New Year" as I would with any other friend, without even thinking twice about it.  She has no biological children of her own, but I truly appreciate the love and devotion she has shown my kids.  

  

So, since Pandas spoke representing the stepmoms, I'm speaking to represent the exes (biological moms). Put your children FIRST, ahead of any hate, bitterness, resentment, whatever you may feel. Your children are innocent victims and they deserve parents and step parents who are looking out for their best interest!! 

  

Robyn 

Robbie Sue,  

  

I completely agree with you, it works both ways, the mom (biological), stepmom and ex .  When you do argue about anything or want to be picky, its the children that get hurt in the crossfire.  As you said you made the new stepmom you friend, just as I did with the biological mom.  When people fight, who can the kids trust?  One is calling the other names, no one comes in to stop all the name calling.  Remember kids hear everything.  The children have to come first in anything.  I also had no children of my own.  So I guess you could say you and I are on the same page. 

  

Thanks 

Pandas 

 
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January 8, 2006, 10:25 am PST

Custody

Quote From: abbiedeen

My husband's ex wife is so bitter toward my husband for leaving her -- and subsequently marrying me -- she says and does things to the children to intentionally hurt my husband and his relationship with his little ones. 

  

A little background:  My husband left his first wife when she was about 5 months pregnant with their youngest child.  Granted, it was probably not the best time -- but there were extenuating circumstances.  I met him shortly after he left.  She blames me for the break up of their marriage.  She says (and possible, she's right) that if he hadn't met me, they would have reconciled.  The fact remains, they married young, because she was pregnant with their oldest, everyone told him not to marry her and they had split up and gotten back together several times before.  The end of the marriage was inevitable. (Thats the short version).   That was more than 4 years ago.  In that 4 years, she has spoken to him less than a half dozen times (no exaggeration!).   She refuses to speak to him about anything, including the children, their education, time with them, etc.   

  

Recently, we movd from NC to WA.  His children are in OR.  So we are now 200 miles, door to door from them.  My husband is asking for more time.  She said she is remarried now, her new husband is the kids dad (she has even told his kids, now 8, 6 and 3, that they MUST call her husband "Daddy" and my husband "Mike" in her presence; that he is not their Daddy anymore because he left "them"), so they do not need any more time than the 30 days a year he had while living across the country.  (He is military, so that was feasible, at the time).  It's back in court and we'll find out what the judge says on the 25th. 

  

Meanwhile, his 3 year old daughter told him last Sunday "You're dumb.  I don't love you anymore.  I have a mommy and a daddy here, I don't need you!"   She then got on the phone with me and said "I don't think I should come to your house anymore!"  When I asked her why not, she said "Because you're dumb and I don't love you!"  I said, "Well, I love you, and I would like you to come to our house again."  To which she replied, "I can't!  It makes my mom mad!"  Hmmmmmm  wonder where she got that! 

  

I have tried to stay out of things with his ex and him.  I type and mail letters for him, because I have an office job and can do things that he can't, due to his job.  I also help him with his legal stuff because we can no longer afford the attorney and I was going to law school before we moved.  I don't speak to her, don't say anything bad to her or about her in front of the kids.  She has no issue with me other than that her husband married me after divorcing her.  She, on the other hand, has told the children horrible things about me, my husband, our families, etc.  

  

So.....what do you do about a biological parent who does not want to "share" the children with the other biological parent and who twists the kids up just to hurt their dad?  How do you handle a situation like this when you see your husband hurting so bad because his 6 year old hasn't gotten on the phone with him for 6 weeks now because "You're mean and  I don't want to talk to you!", and his mother won't get on the phone with his dad to try to gt to the bottom of WHY he is saying that?  What do you say to your husband when he says "I give up!  I might as well just stop calling and trying to see them!  They don't love me anymore!  They don't want me around anyway!"  Especially when you KNOW that's not true -- that they are just saying what their mother wants thm to!  What do you do??? 

  

Anyone? 

  

Erin 

Erin, I admire you and your husband for lasting this long.  I was never in that perdicament.  My real dad left when my mom was pregnant.  The dad that I grew up with was my stepfather, both families got along great.   My biological father, has never even tried to reach me.  The only thing that he did that was good was leave when my mom was pregnant.  My biological father took one of my brothers with him  and for the first time the whole family met the oldest of our family when i was 14.  It was strange to see him because we all look alike.  So for your perdicament, the best thing that I can think of is go to court, but leave the kids with a babysitter unless the judge wants to talk to them.  The children should not be in the middle as they are now.  Your husbands ex is making the children call their stepfather "daddy" which is not right at all.  My two stepdaughters asked me WHAT I wanted them to call me, I told them anything you want.  I also told them that by no means am I taking the place of their mother.  I  told them as close that I can come to that is being your friend and stepmother.  That seemed to the kids at ease....maybe try something like that but only to the ex, she might think that you and your husband want to take the kids from here.    Letters don't always work.  I feel for you both, I cannot even think, of doing to those little children who need their biological dad.   

  

I hope everything works out for you and your husband 

  

Pandas (Cheryl)  

 

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