nibbor

this person is not your friend my dear.....
also there is a book called "boundreis" by Townsend this is the best book ever written dealing with people exactly like that!!!
we luv you and we know you can only do what you can do hun....
Sheila

Why do ignorant people who know nothing of this disease and seem intent on staying ignorant continue to offer up advice that is not only stupid but as you say insulting. I do believe if someone said that to me in person and meant it I would probably be in jail for assult and battery. I doubt I could do more than smack the person more thann once as sick as I am but I do believe i would try! When are these idiots going to do a little research and discover hey there is no cure for this and hey the pancreas is the only organ in the human body that won't heal itself, I do understand your anger, hell I got angry just reading it, Be well and avoid this idiot as much as humanly possible....Troy

I agree with the comment about this person NOT being your friend! It is one thing our friends trying to offer advice because they care, but there is something completely wrong with what this person is trying to do.

Please don't take it onboard and make yourself feel worse. Print it out, tear it up and set fire to it. Gone and forgotten. Plus forget all about this so called friend and concentrate on those who love you.

I agree!! Do a physical act to get rid of that note. Print it out if it's a text or email and set fire to it. Then remember every single day that person is not your "friend" to even consider putting that on paper instead of relaying it in a different way with a big fat hug.

I had to do this with a "friend" who told me to "get over it" when I was discussing how sad I was my daughter and grandkids were mad at me and hadn't spoken to me for 6 months because I quit handing over money. Some friend!!!!

If you've suffered with this terrible disease for this long...YOU ARE WAY STRONGER THAN SHE EVER THOUGHT ABOUT!! You can print this and mail it to her...tell the idiot to CALLME...I'll straighten her out!!! :D YOU GO GIRL!!!!

That is not a friend. A friend is compassionate, caring, giving, loving and most of all trusting...But don't worry there is such a thing as KARMA...Respond by saying I never wanted sympathy only understanding & include a doctors summary of CP make sure it's not a patients summary because those are different with a whole lot less on it..and tell her you have chosen to start healing by removing all negative people from your life..

I did this to a so called friend after I was diagnosed with hemochromatosis and had a lot going on including colon cancer this and lots more. She ended up with breast cancer had it removed and still is "suffering". She gets a runny nose & she is dying. We are still not friends...

Surround yourself with others who really care about you. You will feel better about yourself..

Your CP Friend
Cheryl

I also know those types of people. I use and research herbs and natural healing. So I have a lot of friends who also do that and I have learned a lot from them. But from time to time there is a person or two that will say the same thing to me as if Im not really trying so I deserve what Im going through. Thankfully most people do NOT feel that way but there will always be a few who do.

Another thing I get sick of is reading or being told that if I do this or take this certain product that it WILL heal me. So sometimes I try those special miracle cures to only be dissapointed over and over.

Sooo frustrating. Those folks may mean well but they havent a clue what they are saying. The only way they will have a clue is if they end up getting terribly sick with something and people treat them the same way.

For me Ive experienced this: "pancreatitis means inflammation so all you have to do is do something about the inflammation"

As if it was that easy. They are clueless as to CP not being the typical inflmmation that goes away with motrin and rest. This is the type of inflammation that takes over and destoryes the pancreas and prevents it from ever working properly again. So even if we did get 100% rid of the pancreas inflammation the damage of it still remains forever unless devinely healed.

My brother made a very similar comment to me about six weeks ago. He said that I only get sick when its convenient for me. He has lived on the other side of the country the last nine years (i've been sick for eight) and visits rarely. I think people who haven't dealt with this illness just don't understand. They also don't understand how quickly we can go downhill. I am sorry you had to endure these types of comments.

I'm so sorry you experienced this from anyone, much less a "friend." I have Sjogren's Syndrome with secondary Fybromialgia. Last Thanksgiving while visiting my son and his wife he accused me of "faking it" because I was so active that week - not knowing I had to do absolutely nothing for weeks to reserve energy so I could be more active that week. They had their first child (will be my only grandchild as my son is an only child and his wife did not want to have children, and I'd been dreaming of one for years). When I went to FL to visit and see my new granddaughter, my son's wife immediately handed me a wipe for my hands before I touched Hailey and when we got to their house I was holding Hailey in a chair, when I got up to walk a little with her I was told I was not allowed to hold her except while sitting because of my "condition." I was planning to move down there and we had talked about me having Hailey once a week - well I was told that wasn't going to happen. I've since had a horrible fight with my son's wife and they have cut me out of their life.

I went through extreme pain for about 2 months. My message to you is this: I agree with posts 3 & 4. Print out the email and burn it. While at my therapist's office one day we packed an imaginary box and put it in my attic. I won't contact them any more and will try very hard not to think about them. I removed my grand-daughter's photo from the screensaver on my computer and phone and will not have any photos in the house. Its what I HAVE to do to go forward and live a life of joy and happiness. I refuse to let my health or the pain of this situation define who I am. I am going to move back to FL, but to another city where my immediate family is, especially my younger brother and his family who give me SO much love and complete understanding. I also try to avoid any kind of stress or drama, and if that means losing a friend so be it.

Do you get emails from The Purpose Fairy? They are so inspirational and give wonderful advice and articles on living a life of joy through all we deal with. I hope you will check it out.

In the meantime, I wish you much love and joy. And a BIG hug. D

OMG! Why didn't I think of that! I could just meditate and heal myself. Dang, after all these years of pain and horrible suffereing with this disease and all the while all I had to do was click my heals and repeat "there's no place like home." Sorry about the sarcasm. Its just that I've heard that statement before... only it actually puked out of the mouth of a nurse. That was more than 20 years ago. I was really angry at first too, but then I realized that some people that aren't sick just don't get it. And hopefully, they never have to go through struggling with an illness just to learn compasion.

Thank you all so much!! I'm sitting here with tears in my eyes. I've always had love self esteem combine with overachieving. This illness has just destroyed me in so many ways.

She sent me this last week and I kept thinking "Maybe she's right!" I know there are things I could do that I'm not. I admit to sneaking "Bad" things like fresh fruit and Hersey's kisses. Am I doing this to myself??

Just reading your comments had helped me heal a little. And made me think maybe I"m not a loser. Maybe I AM doing the best I can. Maybe I'm not PERFECT.

It seems that if someone thinks of something you're NOT doing, they have the cure. They just don't realize all the things we ARE doing and how hard they all are. We're only human!

I'm going to read your wonderful advice and support again tomorrow and write in my journal. Try to save the positive energy. And check out this Purpose Fairy (book? website?). Most of all I'm so thankful I found all of you. You make me feel like I"m worth something after all. Especially with this horrible illness (CP as well as Fibro). I love ya! Nibbor

Just reread my mail! Love self esteem (Freudian slip) is supposed to be LOW self esteem. Guess my fingers don't like that tho... :)

I just read ALL of your posts and it helps me to know there are PEOPLE out there who truly understand.
I am dealing with Fibro/CFS and CP along with some major new stomach issue and have had thyroid cancer and my own family don't think there is really anything wrong with me.

My own daughter NEVER discusses my health or hospitalizations with me................guess they think if they don't talk about it it isn't there!

I've lost several friends who just kind of SLITHER away after I've had to cancel an event or try to explain myself and my health.
It's like I feel like I have to JUSTIFY why I am unable to do certain things. That is sooooo draining and stressful.

I've finally come to accept that those people aren't REAL friends and most of them are NEVER sick so they don't even care to learn about CP, Fibro or CFS. Why waiste my precious time when I need all of the strength I have to get me through a day.

I do believe in KARMA as one of you brought up.

I am very LONELY at times but then I think that is LESS stressful than trying to EXPLAIN my health to people who truly could care less!

My HEART goes out to ALL of you who are suffering or have been deeply hurt or let down by CRUEL INSENSITIVE PEOPLE!

NONE OF US asked for any of these health problems and it's so heartless for others to suggest WE can just snap our fingers and be NORMAL like them!!

Nibbor...our friend's do not understand this disease at all.

I would assume this person has never been sick. I have had this disease going on 3 years. Recently my hubby was rushed to our local ER with Kidney Stones..needless to say he was brought to his knees in pain. At one point he looked at me with tears in his eyes and said "Is this what you go through everytime you are in the ER?" and my response was "Yes but let's worry about you now" his response "I never realized what you were going through until now".

Basically people who have never really have been in so much pain or so sick that they had to go to an ER will not understand when we need to vent so I stand with the rest of this group by saying get rid of this friend...they obviously do not support you.

Stay strong and it's okay to vent...you are in the right place and with the right people.

Hang in there girl!

Hey all,
Since I now have you ALL I have deleted this so called friend from my book. I think I was just desperately trying to connect with anyone and feel human. It's been such a breath of fresh air to meet you and hear what you have to say.

re; other people not realizing what we're going through. SOOO true! Even I forget/suppress what I've gone through. My mother-in-law got cancer several years ago and had to have a hysterectomy and radiation. It was the first time in her life (like 65 years) she had EVER been sick or in the hospital.

At first, she also said something like "how do you stand being in the hospital all the time and not being able to DO things and the constant PAIN?" And I'm completely ashamed to admit part of me was relieved to think someone knew what my life was like, even a little.

Since then, she's been able to recover almost completely and is back to her old life. And I'm grateful for that - I love her dearly. But now it's like she doesn't remember what that pain and loss of mobility is like. Like she just suppressed it and it was a movie she watched and forgot. Maybe she figures if she can beat cancer, why can't I beat this lesser disease? I don't know what she's thinking - she doesn't talk about it. I just know we're farther apart than ever. And that makes me sad.

And again, sooo grateful for this site and you people to help me deal with this disease. And allow me to help you at times too. That makes me feel more valuable and human! MERCI!

Hey Nibbor
That is funny that you mentioned cancer, because I went through the same thing w my father in law...my son has had cp for 5 years, and nobody from "his " side EVER once came to the hospital in 5 years...one time he was in ther for 5 weeks with no food or water (NPO) lost 20 lbs... and when the "father in law" got cancer...all of a sudden the whole world was helping out (including me) as well as dealing with my own son...but dad is all better now, cancer free one year later...but my son still struggles, his life is not the same...I often times thought that maybe it would have been easier if it was cancer that he dealt with because after one year, you are alll better!! But he has had several surgeries..etc... you know the drill....and still....we applied for "make a wish" and it was a NO...but yet I personally know two kids who had cancer and got the make a wish dream come true, and are now living a normal life cancer free....must be nice....
all this just to say I can relate...lol, no Im not really bitter, I do believe that God has a plan for my son, and a reason,but I must admit...I do wonder....
be well
Sheila