My life of late (not all pancreatitis related and LONG)

[Guest guest]

Hello friends I have had several good developments in my sega with ch. pancreatitis that I wanted to share with everyone.

1. You may remember the problems I've been having when I have to go to the ER with acute exacerbations. Well, I had a good chat to my pain doc about this, and about all the lies that had been written in my chart about me drug seeking etc. My pain doctor knows me well, knows I do not abuse narcotics, and was rather disgusted. So she is writing up a protocol for when I have to go to the ER, with input from my gastroentrologist. From now on when I go with severe acute pain that I have not been success treating at home by going on a clear fluid diet and increasing my breakthrough meds to every 4 hours, I am to be given

1. A bolus of 100mgs of IV fentanyl, and if there is no improvement in 15 minutes 50 more mgs, with 50 more in 15 more minutes for a total of 200 mgs. OR a bolus of IV 10 mgs morphine, followed by 5 more in 15 minutes and 5 more 15 minutes after that for a total of 20 mgs. If I am having severe vomiting, my electrolytes should be checked and IV fluid given accordingly. If the pain and vomiting do not improve within 5 days I am to be admitted under my GI doc, for total gut rest. There will also be a note saying that the severity of my pain should NOT in any way be judged by whether my enzymes are elevated or not, as my enzymes no longer increase due to the damage to my pancreas. I've been being told constantly that I couldn't possibly be having an acute attack because my enzymes were not elevated. We all know that's not true, however ER docs seem to be so uneducated about the signs and symptoms of chronic pancreatitis it really makes me worry sometimes!

This is going to make my life a lot easier! Also, I have been corresponding with a doctor from Harvard, who is a pancreatobiliary surgeon. He performs a rather new procedure called a thorascopic splnchinecectomy. They go in with a thorascope and cut a nerve to your pancreas, so you no longer have any pain. My pain doctor said if he will give me information on the long term success rates, and if they are high, she will help me get the Canadian government to pay for my testing, pre operative visits and the surgery in Boston, as this procedure's not done in Canada. Finally, some hope of not having a lifetime of pain!

I've gotten rather behind in my reading of the digests lately. I've been having family difficulties that have stressed me out to the point of causing me a nasty pain, nausea and vomiting increase. I need to get this off my shoulders, and because it has been affecting my health, and because you guys are about the most supportive and caring people I've met yet I'd like to give you rundown. However, I don't know if we are supposed to discuss personal stuff on here, so if we are not just yell at me and tell me not to do it again.

I've been going through a living hell. 3 months ago my father announced he was getting remarried. I was having a really hard time deciding whether or not I was emotionally able to go. Well, in the end I couldn't.

Before I go any further, let me give a quick explanation about my relationship with my father and hopefully this will help you understand why I made the choices I did

I was brought up in a military family. My dad was a cook in the armed forces. He was also an alcoholic until I was 8 years old.

He was very vicious to me during my childhood...managing to convince me I was worthless, stupid, no good...I'm sure you know the rest, and pretty much using me as a punching bad whenever I "deserved it" until I was 13 years old, and threatened to have him arrested.

In 1991 we came back from Germany where my father had been stationed.

Soon after we came back my dad began having to go away a lot, on "military exercises".....His absences became more and more frequent as years went by. In 1993 I began having problems with my health, a bad pain in my lower abdomen that eventually got so severe it made me vomit most of what I ate, and I quit eating.

The doctors misdiagnosed me with anorexia. I spent 3 months in a psych ward, and was in and out of medical wards because of dehydration and malnutrition. In 1994 I had lost 110 pounds, and was weeks away from dying because of not eating. To prove to me and my family there was nothing wrong that wasn't psychological. What a shock they had when they went in and saw the mess of cysts, inflammation, infection and scarring in my pelvis.

From 1995 until 1996 I had 3 surgeries trying to fix things up. I eventually lost one ovary, and one tube, and having kids will be very difficult, if not impossible. During these years I also had multiple other problems because my body was so run down. One of my surgical wounds split open to the muscle because of infection. I had 2 deep tissue infections requiring 2 weeks of IV antibiotics in the hospital. A bone infection that required 8 weeks of Iv antibiotics and had me in and out of the hospital. I developed a throat infection that caused my epiglottis to swell over an block 2 thirds of my windpipe requiring a 3 day ICU stay and 5 more days on a regular medical ward. I had 5 allergic reactions that caused severe muscle spasms in my whole body including my throat and airway and all 5 required ICU stays. The I herniated a disc that caused paralysis to my left leg, and had surgery for that.

Is it any wonder I wound up with a severe depression? All this stuff, added on to the fact 13 months of minimal eating which caused a chemical/hormonal imbalance in my brain caused a major depression. In 14 months I had tried to kill myself 7 times, and nearly succeeded 3 times. All this by the ripe old age of 17.

My dad was spending most of his time away on "military excursions" I think we all knew he was lying but didn't want to face it. He showed absolutely no concern in my health problems. He managed to get home for one of my surgeries and once when I tried to kill myself. And then he yelled at me for being so stupid.

he "couldn't" stay home with my mom to help take care of me, and watch me 24/7 to try and keep me from killing myself, because he was "too busy"

In 1997 he retired from the military. Me, my mother and him were supposed to move to their hometown and buy a house. My father dropped us off at my mom's brothers place and went back to "take care of some more details" regarding his retirement" and would be back in a week.

A year went by, with no calls, no letters...nothing.

Then my sister, who was then living in the USA tracked him down. He was living with the woman who he had been cheating with and lying to us about since 1991, 3 months after we came back from Germany.

About 18 months after he first left he came to the town where I was living with this woman to visit his mother, and called me up and asked if he could see me. I agreed to go out to supper with him, some of his family and this woman. Since then I have visited them a few times, and lived with them for 3 months after my mom died this December. During these 3 months Lorraine (the girlfriend) made my life hell. Fortunately (my fiancée) had found us a house and I moved to this city. She made what was already the hardest most painful time in my life 10 times worse.

But I tried to put all this behind me, and her and my father stopped by to visit here from time to time, (they live 3 hours away) and I spent 5 days with them this summer camping.

Then In July, Lorraine found out my father was cheating on her. She called me every day with details about it, and how horrible he was, and how she had all his things packed and the locks changed and was through with him.

I really couldn't feel very sorry for her, I had already been through this, except it was 100 times worse because it was me and my own mother he had done it to.

3 days after her last phone call ranting about my father, I get a phone call from my father, whom I hadn't heard from during this whole month. He told me him and Lorraine were getting married in October.

No one asked me to go. No one asked me to be in the wedding party. It was told I was, and I was too scared TO SAY NO.

But I just didn't think I could do it. It was too soon after my own mothers death...the scars from losing her were too raw still. My father still had never acknowledged what he did to us, the pain he caused...it was just like it had never happened.

The reasons I didn't feel right about going are very complex, and have to do with many things...there is not just one reason....and its not anything I can really put into words. A bit of it had to do with the fact my mom had only been dead 10 months, ...and I felt I was being a bit disloyal to her..but that's only a small part

Still, regardless of how much it hurt me, I planned to force myself to go so as not to hurt my father.

Anyhow, I was planning to take the bus to my fathers place which is 3 hours away on Saturday, the day of the wedding. My bus left at 7 AM. I had been up the entire night before crying and crying in s arms because I just did not feel right about going, but I knew I didn't have a choice.

I left for the bus stop at 6:15 AM I got to the bus stop, and within 5 minutes was sweating so bad I drenched my shirt and jeans right though. I began having sharp pains across my upper stomach, from my pancreas reacting to the huge amounts of acid my stomach was putting out because I was so stressed. Then I had to run to the bathroom and vomited.

I called a cab and went back home. I knew that if I was this wrecked before even leaving I would never make it through the wedding.

As I was walking in the door the phone was ringing. I picked it up and it was Lorraine. She said to me

"I knew it! I knew you weren't coming. Shana, you never planned on coming but you lied to everyone and said you were."

All my father said was "Have a nice day"

My sister refuses to speak to me, and has said some pretty nasty things about me to others.

She told me to my face that that feeling disloyal to my mom was "stupid"

This coming from my 31 year old sister, 9 1/2 years older than me who refused to come home and be with her mom during her last 3 months because she "couldn't handle it" and who refused to even come home for her memorial service. She wouldn't even answer my phone calls for 3 months because she "couldn't handle it"

So I took care of my mom alone, and sat with her alone when she died. I was 21.

I had opened my home to her when she left her abusive husband and came back to Canada in June. She lived here free, as she couldn't find a job she liked. She did what she pleased, offered us no help in anything, even cleaning up after herself. And I came to find out the whole time she was here she had been putting me and down and saying some pretty mean things about me behind my back, not to mention reporting everything that was going on in our house to my father, right down to what we spent out money on, which she also criticized us about, behind our backs of course. I should have known as she was doing the same thing to my cousin who also lived with us, putting her down to me. I now know it was simple jealousy. She knows she will never have what we have. A have a relationship with a guy who is absolutely wonderful, and we are truly in love. My cousin has a job paying 12.50$ an hour. And my sister...well she wasted the last 4 years of her life being a slave to some guy she married after meeting on the internet 4 years before, hasn't worked in 5 years, and is having to live off her family.

I wrote my father a letter trying to explain as best I could, and I had to talk to him on the phone Monday, 2 days afterwards. My cousin called his place to ask about something, and my father asked to speak to me. He told me I had missed a good time, I had ruined our relationship, and that he didn't understand "my reasons" for not coming.

I told him whether or not her forgave me was up to him, my life would go on, and I didn't understand his "reasons" for a lot of the things he did either, but I didn't hold it against him.

He then said that he didn't see any need to forgive me, because I obviously hadn't forgiven him and it goes both ways.

The next day he received my letter, and emailed me the following message

"Your reasons are bullshit

Shana, F--- off and do what you want, I don't care anymore. Just get out of my life. You are no longer my daughter"

I have decided that my relationship with my father is over. After all I forgave him for, he will not even forgive me this one thing, and after the message he sent me...you just do not say things like that to people you love, let alone your 22 year old daughter.

His presence in my life has been largely negative. And as stressed out as I was in the beginning, as hurt as I was, I actually feel like a huge weight has been lifted off my shoulders knowing I no longer have to deal with the negativity and pain his presence has brought into my life. I forgave him for 2 reasons. because a relationship with my father was more important than holding a grudge , and because my mom asked me to. My mom was a pretty great lady.

But now its just not worth it.

As for my sister, I have told her to come get her things out of my house, she is no longer welcome here. She had been causing problems for everyone here, but mainly she had been driving a wedge between me and , and that is not something I will allow. My focus now is my relationship with him.

He has been so supportive throughout all of this. He never influenced my decisions at all, but supported me 100% with the choices I made.

He is honestly the best thing that has ever happened to me, and without him I am lost.

Losing the rest of my family does hurt a little bit, but I cannot keep people around who have shown time and time again they are going to keep hurting me.

In the end, my father made the choice. As many wives as he will have in a lifetime, I will ever only have one father...but that doesn't matter.

And maybe on the day he doesn't get a phonecall when his first grandbaby is born, he will think twice..and wonder if he made the right choice.

Anyhow, I am sorry I have rambled on so long, but I really had to get this off my chest. I look at it like this....The hurt id caused by a big ball of feelings all wound together that press against your heart. If you do not unwind that ball of feelings, then more and more feelings will keep winding themselves into the ball, making it bigger, and making the hurt worse. The only way to get rid of the hurt is to unwind all these feelings by talking about them (or writing) so that they do not just keep getting bigger and bigger, and the pressure on your heart that is causing the pain goes away.

Hugs to all, I hope everyone is doing ok....

Shana

Halifax, Nova Scotia, Canada

pancreatitis diagnosed 02/98ICQ# 95800242

http://www.geocities.com/shanajs21/home.html

[Guest guest]

In a message dated 10/29/00 9:30:33 AM Eastern Standard Time,

shana@... writes:

<< I've gotten rather behind in my reading of the digests lately. I've been

having family difficulties >>

Shana, I'm sorry for your situation and I have sympathy for what you have

seen. Family problems can be so big and emotionally demanding. They don't

help personal medical problems either. Please remember the past is done and

what happened in the past does not have to control the future. Please

consider all possibilities and have the faith that you make the right choices

for you. That's most important for everyone on a day to day basis.

Poncho

[Guest guest]

Shana,

I just finished reading your e-mail and I am fighting to keep the tears from

flowing. I wish I were close so I could just put my arms around you and hold

you. My daughter is not a lot younger than you (she'll be 19 in January) and

I cannot imagine her having to go through the pain (both emotionally and

physically) that you are going through. I am sorry to say this, but your

father is a bum. You really already knew this, though. Any man who could

say what he did to you, is no man at all. You did nothing wrong. How dare

he treat you the way he did! I am so sorry you had to lose your mom at such

a young age. I am 39 years old and I have no idea how I could manage without

my mom.

I am thankful you have your boyfriend to give you love and support. Please

know that it is your father and other family members who have the problem,

not you. What a pitiful existence they have! You would do well to do your

best to forget they exist.

Please take care of yourself. I'll be happy to be your adopted mom if you

like. You sound like a lovely, brave young woman whom I would be proud to

call my daughter.

Hugs, kisses, and love,

[Guest guest]

Wow Shana,

It doesn't sound like you should have pancreatitis with all that you have had

to go through with the family stuff alone... You are in my thoughts and

prayers and I hope it helped to write all of that even if it broke some

hearts here to have to read it .. we are all here for you and I am sure you

know that... keep that chin up it sounds like you have done the right things

to me... good luck girl...

Wishing you all a pain free day

from Michigan