Re: Re friends, family support-specialedugator, Jim, Sandy

[Guest guest]

Hi. Hope today will be the start of a more comfortable time for all. I've been

reading your stories, & feel so bad for y'all. I've had chronic panc. for about

12 years & can relate to your feelings of isolation. I am fortunate that I'm

older (62) and married. My husband has always been a rock. He has had many

medical issues too & it seems that we take turns holding each other together.

Maybe because we both have had long-lasting debilitating medical problems, its

easier to understand what the other is going through.

I wasn't as fortunate with my parents. They were both healthy, robust into their

80's. On hearing that I had left work because of pain, my father told me I

should just keep busy & forget about it. Exact quote, " What will you do when you

get old if you can't do things now? " I was never able to get them to understand

that my trips to the ER & hospitalizations were not how I chose to spend my

time, that I was dealing with a serious illness as best I could.

Eventually I learned that although they gave birth to me, my parents were toxic.

They were a block, not an assist, to my health & well-being. It sounds harsh,

but the best thing I ever did for my emotional health was to almost stop seeing

them. I called them every 2 weeks or so, but only saw them 1 or 2 times yearly.

Some people whom I had considered friends drifted away as I became unable to

make definite plans & was sick so often. A very few other people became closer.

I've learned that all people have different capacities for empathy & friendship.

Some want only buddies to spend good times with. They aren't capable of caring

for others with problems. The main thing I learned is that it is not the one

with problems who causes them to turn away. It is their own shallowness. They

haven't learned yet that hard times eventually come to us all. No one gets to

spend their whole life happily playing. When you are surrounded only by " Good

Time Charlies " , you can't expect them to change & become supportive when you hit

a rough time.

Hand in there. You will come through these trials stronger than ever. It is not

your failings that caused your ?friends to desert you. You will find people who

will be true friends, starting with many on this list.

Be well,

jan g

Date: Sun, 21 Aug 2005 23:57:29 -0000

From: " specialedugator "

Subject: Re: Re Activity and Pain...again (shortened)

I have been extremely sick these last 8 months. I was living alone

when the terrors began. I would get so sick that I would pass out

from the pain and/or vomitting. When the passing out began, I was

very freaked out about my personal safety. Luckily, the 1st 2 times

that happened, I was on the phone with my parents. Luckily, my mom

and dad jumped into their car and came to get me, thankfully, I was

coherent enought to get up and unlock the door. From there we went

straight to the hospital. I never was well enough for me to go back

to work and/or have my own place. The months of May and June were

spent in the hospital. When my lease ended, my parents had to go and

pack up my apartment, because I was laid up at the hospital. I am

very grateful for my parents, I would be so isolated, much more

depressed and hopeless, etc. if it weren't for them. My parents are

just two of the most selfless, incredible people I know. They have to

sit and watch me ride this rollercoaster. A lot of the time we don't

know whether to laugh or cry. We are all feeling so alone,

frustrated, confused, mad, angry, happy that I am not in the

hospital. Happy that I can at least go to one or two places during

the day.

I haven't had much of a life lately, add the word social and whoa! you

can strike that word off the list. I mean, I am suppossed to be

living it up, I don't have kids, I am not married, etc. This is the

time that I should be out there dating, traveling, going dancing. It

is such a big effort for me to even go to the grocery store. I am

completely scared to be alone, because I just don't know what could

trigger an attack. Therefore, I don't drive. I miss having a good

time. I miss having things to look forward to.

About the friends aspect...I have lost the majority of my friends over

the last 8 months. The one that hurts and baffles me the most is a

girl that I met at college, we've been friends ever since. Now, we

live in different cities. I gradually noticed her not calling me or

calling me back when I'd leave messages. Now, she has fallen off the

face of the earth. I know she had a break from work, because she

works in the school system. I have no idea why she couldn't just pick

up the phone and let me know she is thinking of me. It wasn't even

like she had to come, b/c she lives here. I mean she gets off easy,

just a little phone call once in a while.

When you are down and out, we need a push in the direction of

hopefulness, healthyness, and happiness.

People are so quick to pick up the phone and sprout off trival

problems. I know that I am no stranger to doing that, but not to

someone who is going through real life problems. Other people tell

me, maybe your friends are scared of what is going on with me.?! Give

me a break! We aren't kids anymore and bad things do happen. That is

the worse time to lose friends. Am I right or am I being selfish?

There was a point that I was confined to laying in the bed or on the

couch b/c I was hooked up to a machine for my J-tube feedings. One

friend would call me, because everyone else was working at that time

in the morning. On several occassions my very close " friend " would

call me and whine about her trival b---s--t problems, relationship

stuff in which she was blowing things out of proprtion. I am thinking

in my head, you have got to be kidding me! She did it several times

and when it was time for me to talk, she conviently had to go. But

funny that she has all this time to talk to me on the phone, but can't

even come to see me in the hospital? I mean out of the 70 or 80 days

I was in the hospital, she couldn't find one day that would suit her

schedule? She doesn't have any restraints at work, because she is a

real estate agent.

On a positive note, one of my close friends lives in Alabama and she

drove up one afternoon to sit with me while I was in the hospital.

Walt, I hope things start to change for you! Thanks for listening to

me!

I know it is scary to see people , but suck it up, we are adults now.

I just never thought the people that I loved being around, couldn't

even pick up the f---in' phone.

________________________________________________________________________

________________________________________________________________________

Date: Mon, 22 Aug 2005 02:11:43 -0000

From: " jethrotullvermont "

Subject: Re: Re Activity and Pain...again

Hi, I read your post and it reminded me when I was in the hospital for

my distal pancreatectomy in Jan 1999. I had a roommate who was a close

friend before he moved in share my apartment. He drove me to the

hospital for ER visits numerous times. When I was in for 3 weeks he

never called me or stopped by, but the worst thing is...I saw him and

his girlfriend walk past my room in the hospital. That means he made

an effort to come visit, but couldn't find the room and left. To me

this was worse than not visiting at all. A few months later I found

out that the hospital cafeteria makes chicken fingers with some

special sauce, he asked if I wanted to go to the hospital and eat a

great cheap dinner. I asked how he found out about it and his response

was, " back when I came to visit you in the hospital after your

operation " . I said to him that you never came to visit me. He insisted

I must have been out of it and don't remember. I then told him that I

saw him and his girlfriend walk past my room but never came in. His

face turned red with embarrassment and I haven't spoken to him or seen

him since he moved in with his g/f a few days later. I guess as my

grandfather used to say, " The world needs a--holes too " applies to

him...Jim

Date: Mon, 22 Aug 2005 03:33:22 +0000

From: TazLady21@...

Subject: Activity and Pain...again to Jim (shortened)

WOW! Jim,

You're story is.....almost made me cry. How sad that a friend would be such a

way. I have come to expect that from my family, but somehow I wouldn't think to

expect that from some one I considered a friend.

From all the times I have been in the hospital with attacks...at least 8 or

more...and even when I had my son my closest relative, my sister who is only 25

minutes away with no children mind you, NEVER came to see me. Not once. EVER.

Even my mom who flew to another state PAST mine when a grandchild was born NEVER

came to see me on my longest stay of 10 days. I know some of you have had much

longer stays than that. But I needed my mom and my son could have used his

grandmothers love, caring, support and guidance at that time. He ended up having

to be shuffled from friend to friend during the day or even stay home from

school to have to go to work with his dad if we couldn't arrange for someone to

get him to and from school, or keep him afterward.

Sandy in Ca

The person who says it cannot be done

should not interrupt the person who is doing it

May you always have in your arms the one who is in your heart

You can complain because roses have thorns, or you can rejoice because

thorns have roses.

__________________________________________________

[Guest guest]

Hi Jan, Thank you so much for the great perspective. I do have

friends from high school that are the best. They come visit 2-3

times a year and when I visit them, I get a set of keys to the

house, and use of the car if I need it. One of my friends, Don, and

I went to see a Yankees World Series game in 1999. I explained that

I had no money and he offered to buy my ticket. I drove down to NYC,

7 hours, and when we got to Yankee Stadium, no one was selling

tickets. By luck, we found a guy who had 1 ticket for $200. Donny

bought the ticket and handed it to me saying " you drove all the way

down here, you take it " . We ended up getting another ticket but that

gesture shows you the kind of friend he is. I also talked bad of my

younger brother. I should say that when I started to get CP, he

offered to pay for me to go to Manhattan to see a specialist. He is

a millionaire who lives in a huge mansion, wine cellar, personal

trainer, maid, olympic swimming pool, etc etc etc. So money comes

cheap to him, but the offer was sincere. He has also helped me

financially when things were bad. I do love my brothers, I just wish

they would want to see me as much as I want to see them. I guess

you can't project your expectations onto some one else. I feel

better just writing this...I guess thats the whole idea behind this

group..thank you all...Jim

[Guest guest]

Thank you so much, Jan, for your words of kindness and support. I

really appreciate you for the fact that you've given me a different

perspective about my feelings about friends. You are very lucky that

you have found someone to spend the rest of your life with. I get

teary just thinking about these things. I want very much to get

married to someone honest, reliable, caring, (someone that can handle

my ups and downs), as well as have a family. I have been so sick

lately that I can't even make an effort to meet men. I can barely

make it to the grocery store or mall (more on that later...). But I

am just not sure that there is someone out there for everyone. Will I

have to face this life by vicarously living through my sister's

daughters and my (divorced) brother's very active dating life? Will I

continue to be bothered about my friends. I know this is all very

trival and I have lost friends before, but I can't help it that I am a

little jealous about one of my friends who is married to this great

guy and they bought a house and a dog or my other " friend " that

finally got engaged? I don't spend a lot of time on this subject, so

please don't think that is all she has to worry about, because it is

not. Maybe I think about it because it is a distraction to the real

problems I have.

I feel so horrible about my parents seeing me suffer. They are very

angry, sad, scared and frustrated, but I literally don't have anyone

else to turn to (besides this wonderful webgroup). We just don't know

what to expect, always thinking will I be able to make it to the drug

store today? I guess that is the funny thing about life, there are

no guarentees. All I can do is remain hopeful for the life I want and

the happiness that I so depreately need right now.