Hugs and prayers to Lisa!

Pancreatitis
#1

Lisa-
I hope this gets to you before you leave for the Mayo. I was reading some of the past posts and was reminded of your surgery. Just wanted to let you know that you have tons of support and love coming your way. Everything will turn out wonderful and you’ll be back home soon enjoying the holidays.

I’m not putting a tree up this year, but if I were, I’d put an extra ornament on for you. When you get home, you should get the recipe for the egg nog from Warren. Maybe there’s a way to at least enjoy a sip. I know this time of year is hard on all of us because of the food we can’t enjoy. I used to love to bake tons of cookies from Thanksgiving to New Years, giving them for presents. I am fortunate to be able to enjoy sweets most of the time but don’t need the temptation. Last year I made Chex Mix.

I had an ERCP done on the 5th and am feeling great. It seems that I usually do feel better right afterwards. I had Jello the first night and was able to eat the low-fat breakfast and some of the lunch at the hospital the next day. I’m eating everything possible to put on some weight - was 91.8 the day of surgery. Maybe now I can eat the Thanksgiving I missed. The next procedure, removing some stones I think, is sheduled for March 12th - in between quarters luckily.

Surround yourself with all the things and people you enjoy and know that you are being thought of. Have a safe trip and come home pain-free!

Love & Hugs!
Kubladi

#2

LISA, YOU ARE A WINNER. YOU ARE A FIGHTER…YOU MUST KEEP FIGHTING.
I WILL KEEP YOU EVER SO STRONG IN MY PRAYERS. YOU ARE A WONDERFUL CARING PERSON. I KNOW ALL OF CAREPLACE IS BEHIND YOU. I FEEL 2008 WILL BE A BETTER YEAR FOR ALL OF US. I AM SO GLAD THAT YOU HAVE DAVE WITH YOU. I KNOW THAT MEANS A LOT. HANG ON GIRLFRIEND. I AM HERE FOR YOU.
HUGS AND PRAYERS…SAMMI

#3

As these days go on Lisa, I am thinking of you and hoping you are comfortable. You have been on my mind and I pray they are taking good care of you and giving you some answers. My heart goes out to you and I can’t wait until you update us here with some “good news” ((hugs to you))

Keri

#5

Hi all and thank you SO very much for your caring note and post and for sending the support and love!!

I’m in MN right now and will drive to Mayo later today. Tomorrow morning starts the tests and the EUS in the afternoon-- although I expect I might need more “surgery” to take care of a blocked biliary duct… again. I’m so not okay with any more invasive stuff-- after 17 admissions and 16 surgeries in about a year, I can’t go through much more, especially anything that could make it worse. I just can’t.

It’s got to start getting better. They just don’t even know why it started. It’s one of “those" cases.

The main thing, and I’m writing this carefully in the hope I won’t offend anyone–new or old to CarePlace, is that recently I’ve posted twice asking for help, something I rarely do, and have said how scared I am.
I’m so fearful and scared of this Mayo visit (which they had to get me into "right away") and every time I take a bite of anything and it’s 24-hour terrible pain that just won’t take a break at all) that I’m crying every day and tears roll down my face every time I even say it out loud.

I’m scared and I’m afraid there’s not going to be a solution, although I will always stay as positive as possible. I just feels like the options have pretty much run out and I can’t imagine another 50+ years of this! I want my life back so badly - even part of it! Like all of us, I’m sure, I hate this. That being said, I received very little response to my posts but a lot of notes still asking me to help others.

I will always do what I can to help anyone, any time, in any way I can - but this time I needed the help and felt it just wasn’t there. That was very discouraging and I don’t mean this to sound uncaring or mad or to include any of my "friends" here who always share their support and to whom I also return it as quickly as I an, or those “newbees” (who have also been awesome in their notes) but this site had always been the one place we could all turn for that love and caring and advice and support.

I will always continue to do all I can for everyone here. Please know that. Just please also know that I’m really human - not the Superwoman some think I am. I do stay upbeat, but that’s just because I see it as the better option. But right now it’s incredibly hard and frightening and I feel like this disease has gotten me where the many other diseases and life-threatening injuries in my life never could. I never let them, but somehow the CP has me in its grasp and won’t let go, no matter how hard I fight and try to overcome it and not let it win.

Dave will be driving me down to Rochester today while I eat pain and nausea meds; and at I know he’s always right there. I’m very lucky in that way. It’s just hard right now to have “friends”, "family" and even CP-ers unable for various reasons to offer what I seem to need right now.

I do understand that this disease is trying and difficult for all of us - I’m not missing that or underestimating that there are times for all of us that we just can’t write back or do much more than send a hug, if even that.

Please just know that I love you all and always wish you all the best and thanks to Kubladi (and those with private notes and wishes and hugs) for being able to give me some of what I so badly need right now.

I don’t ask often, and maybe shouldn’t be asking— but I still need that help. I’m a little lost right now and need to feel like I’ve got you guys with me. I hope you can understand what I’m saying and that it’s not sounding insulting. It’s not meant to be. I do understand where we all are at times; but am asking one more time if you can offer me anything right now, I could really, really use it. And it’s always there coming back to you from me as well— I promise.

Kubladi - thanks again for this post - You really made my day (and so glad to hear of your luck with your procedure-- now enjoy the eating!!!). I’ll get to read and reply to a few new messages later today once we reach Mayo. I’m keeping the smiles and laughs, but also have the tears and fears. Please understand.

Thanks.

Love and hugs to all,

Lisa

#6

Hi Lisa,
Your journey has led you to this new place and I truly believe it is where you will get many answers. I know how much you are suffering and I really wish I could take it away for you. You are such an inspiration to many, many people, please don’t think we don’t worry about you. I think for many folks, you are the answer for them. You have been through so much and they really look to you for answers.
I know we have spoken on the phone and you are always so caring about my daughter and how she is doing and yet at the same time you are suffering much, much more. I truly wish I could sit with you at this time and hold your hand through this.

I really feel you are at the right place now-they will take such good care of you. My greatest advice to you would be to just let go and LET THEM TAKE CARE OF YOU!!! Relax yourself knowing you are in great hands and your wonderful Dave is with you. They will find answers for you and help you-you are a very special person and God will be watching over you.

You are in all our thoughts and prayers and we are all cheering for you!!! Stay strong(as you always are) and keep smiling. You are an inspiration for so many-but this is your time now-------Get better and keep us posted.
Love,
Terri

#7

Dear Lisa,

I am so sorry that you are having a bad time. I have been away from my computer and was in the hospital for 8 days. I am really sorry that we have not been there for you, you always give so much to all of us. Please know that you are in my thoughts and prayers, if you want to talk please contact me privately and I will give you my number. We think of you as such a strength for all of us, it is selfish of us to forget that you too suffer like we do and need help.

Please call me, I promise I will listen and try to be strong for you.

Take care,
Love Leanne

#8

Lisa darling,

I can understand what you are going through and what you said about little bit change that has taken place in Care Place. I stopped posting anything after my trip because I didn’t get any response at all. I used to check whether anyone has seen it but always 0 responses. You are right the time I joined I felt so welcome, I’m not alone who is going through this and if I tell anyone that I have pain it used to pass around and everyone used to send their hugs, loving messages. I think it’s because people got busy in their occupations and some who used to write regularly about anything they do not come on Care Place that much.

First of all I didn’t understand in the beginning why more people look towards just couple of people (even though they are suffering, they are having hard time but they pushed themselves hard to help others) when we are all supposed to care for each other. There are no Superwomen, Supermen to help people when they are hurting too. We are all sailing in the same boat and need to take responsibility equally. That’s what I used to get confused as if people are looking towards someone to lead them to feel comfortable, give suggestions to their problems etc. I tried to say this indirectly to many people saying that we are all in the same boat sailing and we need to support each other whenever some one needs help or moral support, when they are trying to stay home and need suggestions etc. It does really help when lot of people respond. That’s what we used to see in the beginning.

As I said, earlier I have some friends from other groups and we helped each other and still helping through private messages. Couple of times I did posted on forum but I did not get any responses. When I came to this place it was like such an active place with the people who discuss, support each other and encourage etc. I don’t know what happened to all that. Recently I found out when I sent Thanksgiving Message to all the friends on Care Place one woman who joined this place for support and understanding as her father was a Pancreatic Cancer patient. I used to find out sometimes but I didn’t get much response from her as she was busy with her dad’s treatments. In response to my greetings she replied and said that her dad passed away in Sept after having a very hard time with the treatments and suffering with the disease. I was so shocked and I didn’t know what to say. I apologized for not keeping in touch with her as I went to India and then I got sick. I felt very bad for not being there for her and she must have suffered so much looking for moral support from this group. She did not take her profile away so I thought he must be still taking treatment. She must be hurting too much to think about removing the profile. She didn’t feel comfortable to share with us that her dad passed away after a long struggle. I was ashamed but she said, ‘don’t blame yourself and take care of yourself.’

I have one thing to say to everyone that besides going through all the tough times, sometimes we all go through the same situation and if we don’t want others to feel like the way we did, there is lot to share with each other. I hope it becomes just like before all the people participating in discussions, extend their moral strength to our fellow members. There are still so many people who are still helping and extending their hands to support otherwise the Care Place won’t exist. Lot of new people are joining the Care Place and they need to feel as if they belong to this website.

The disease has beaten us up very badly. but we can’t give up and go into our shells like before coming to the Care Place. We can do something and this is the perfect season and time to extend, open up our arms and invite into our lives the friends who are suffering just like us. I’m not criticizing anyone or insulting anyone, it’s just that some people are feeling left out and not getting any response from all the wonderful friends like before.

With all of our experiences putting together if we try to understand each other and support each other it’s definitely going to be a wonderful place. In this busy world of ours where survival becomes a struggle doesn’t let us think about anything else. But after going through all the things with this ‘beast’ everyone becomes compassionate, understanding and loving towards especially friends like us.

Lisa dear, good luck, relax and try not to think about the tests until you get there. Try to divert your mind reading a book or watching an interesting movie I know it’s hard to do but You Can Do It dear friend. Your courage and not to give up attitude gives inspiration to all of us and in return we are sending our positive attitude, where there is will there is a way, please do not forget about it and lots of love and hugs.

Hope everything goes well and I’m sure you are going to get the best care. When you come back we’ll be ready to hear from you the relief you got and how comfortable you feel. I wish it wholeheartedly. Today we had busy day. I went to Sunday Church school, then to my daughter’s dance lesson and to my kids Piano Winter recital. It was fun but I’m too tired and need to go to bed early.

Love and hugs,
Durga.

#9

Oh my Lisa, I am so sorry for all your pain, hurting, and feeling deserted I would be feeling the same way, and there is no reason for you to be sorry for letting your feelings out, we all need to buckle down, and remember how deathly this disease is, this is not just a email sight for fun, it is intended for people with needs and illness. I now I will say I am sorry, if I have offended anyone here at Careplace.

I know over the last month there has been a lot of changes here on Careplace, but thought it was me??? As you know I have had a very very large plateful, and still try and show and lend support to others here on CP…I am not making excuses, because I am one that has sent private messages and hugs, I just want you to know that I have and will Always be here for listening and crying, and complaining, and everything else this disease brings out in us. I pray daily that someone will find a cure for this crap. I was at Mayo’s about 18 years ago, and it took everything out of me at that time just to get around the hosp. areas, so if you find a wheelchair, by golly grab it :slight_smile: you will need it after the first appt.

We stayed at Dorothy’s Kitchenettes it was very nice felt like home plus very reasonable, not sure if it is still there but it was within a 1/2 mile from Mayo. They have there own Kitchens, Baths, Bedroom, living area, private entry. If money is an issue, check into the cost of the Kitchenettes they have to rent while your there, gotta be less then any Hotel/Motel right…Ok hon I just needed to post back to let you know I am here in Lincoln, pushing for you, and praying, and sending All my Love to you, If there is ANYTHING, ANYTHING at all I can do just let me know, and I will be ON IT…I do live far away, but I could do phone calls, or letters or whatever you may need that includes Dave as well…

Ok BIG BIG HUGS HON, and please Keep Your Head High, and never lose faith!!!
Love, Barb :slight_smile:

#10

Terri,

I wanted to personally THANK YOU for sending out such a wonderful note to Lisa and including all of us here on CP, I tried to type something, but now that I have sent it, I feel as though I word somethings differently then maybe I should have, but I am truly Heart Broken for Lisa, as you have said Lisa is such an inspirational person, that sometimes I think we just forget because we are sick and in pain. and also we don’t send the little smiles and hugs and support that we should all the time.

I just really wanted to say Thank You for the Post, and good health to you and your family as well…
Barb :slight_smile:

#11

Me being a newbie is not really an excuse. I did send Lisa a note but do want to say that I am also sorry for not being as attentive as I could have been. I have felt so welcomed by all here and it has helped so much lately, I need to remember that things I might say would help in some small way as well. So to all who wrote to Lisa here, thank you.

And to Lisa,
Once again, please know I am praying for you. I hope you are comfortable tonight and pray all the procedures they throw at you actually do what they are intended for- to help you!!! I pray you feel “held” during these days at Mayo by people here and more importantly that God holds you up when you can’t hold yourself anymore!

From your “new” friend
Keri

#12

i totally agree with you, i sent lisa a private message and hope it will help, WE ALL need to put ourselves aside at times and forget our pain as the next persons maybe so much more then ours at the moment!

Julie

#13

Thank you Barb. All of you truly are in my thoughts and prayers-I do not have this disease but both my husband and daughter do and have suffered for many years. I truly feel what all of you are going through-I have never missed a “wonderful-ha-ha” ER visit and endless hospital stays, surgeries with either of them. Watching the pain and begging to get immediate pain meds for them is a job in itself. If any of you do this alone-GOD bless you!!! None of you deserve this horrible disease and it only makes it worse having to explain it over and over to countless drs who really don’t care anyway.
Durga-I have such high regards for you, being such a good mom and never stopping with all the pain you go through. You are such an inspiration to your children-believe me they see it. My daughter is my hero-I have said this to her many drs; that she not any of them is pure example of strength. She has smiled and made their jobs so much easier through the years, because she rarely complains and agrees to all their “experiments” Yet the drs and nurses always ask me how I do it!!! Can you imagine-me-what complaints can I have being able to eat and no pain-I always look them in the eye and say “with her as my example, I can get through anything”.
So for all of you, please remember that you are heroes in your own way. Getting through this disease hour by hour can be quite a miracle, especially when the pain gets so bad. Stay strong-always remember that someone does care, and are rooting for you. Many nurses have told me over the years how seeing my daughter survive this time and time again, has pushed them to be better. So, see, sometimes the last person you think-you are making a difference.

God bless to all of you and NEVER give up!!!
Terri

#14

Lisa,

I know that I am not very good at giving words of encouragement. I am not very good at it. But that is no excuse.

I do want everyone to know that I pray for everyone at Careplace several times a week. To me that is the best way to support and send my love to you all.

Lisa, My prayer is that the tests at Mayo will bring new information, help and relief. Also that God would give the doctors Divine information about your body and how to treat you.

We love you, care for you and pray for the very best for you.

Vonnie

#15

Hi Terri!

this is the kind of support we need to offer to each other, thank you for such an uplifting post ! I never consider myself a hero, but I do think that of everyone else here on the site, i know how grumpy I can get when the pain hits so hard. At times it just is too much to laugh and to cover up and i feel like such a failure when I am grumpy to my dear family and friends, but thanks for the vote of confidence we all need that ! You are a treasure and bless your daughter and husband !

Again thank you !
Julie

#16

Dear durga,

I just want to say Thank You for pointing out very very important information to the friends here on Careplace, it is not the same and speaking from the heart, I have not been on as much as I too have been strugling to take care of me, my mom, my husband, my daughter/boyfriend, and I really do get busy and don’t send out private messages as much as I use to…I am lucky to have YOU and LISA as my very Dear Friends and I will never stop giving my support and suggestions, or anything that will help ease the pain and suffering! I feel like all I have done is sleep and run and sleep.

My goodness Lisa and You and Careplace are Always on my mind, sometimes I just don’t know how to respond and other times my heart just aches and I can do nothing but cry, and pray that everything is going to be ok…I believe the good Lord will take us all under his wings and keep us strong and faithful. I know that Lisa is so very scared as I would be too, I do remember going to Mayo and how scared I was, it was for a colon cancer evaluation and if that doesn’t scare the crap out of someone man…

So I totally understand where all the fear comes from. Ok it is getting late but I really wanted to share this with you and other here on Careplace, that yes WE do need to lend support or whatever is needed to keep the faith going…

Big Hugs to YOU and lots of love, Sending my thoughts and Prayers to you, and LISA…
Love Ya, Mrs Barb

#17

Hi Terri,

I just wanted to send a little note back letting you know that I read your post, and I want to Thank You, Your so right WE all need support sometime and we do get wrapped up in our own pain and suffering…I am as guilty as the next person…I am too sick tonight, but I got on just to check in with everyone here on the forum tonight…My prayers go out to all who are in pain this evening and I am sending Big Hugs to YOU and YOUR Family, Thank You Again…

Love, Barb

#18

Just wanted to say one thing!!! NEVER allow yourself to feel like a LOOSER that word to me is so Bold and Ugly that NONE of us should ever feel that way…I often feel like I am inconvenience to my family, because they always pick up the slack, but PLEASE PLEASE don’t ever feel like that, you just need to get on Careplace and talk about how you are feeling, you are always welcome to send me a private message if you would like…God Bless You, and hope your having a pain free evening and day tomorrow…

Big Hugs to You…Barb :slight_smile:

#19

Thanks Terri for your wonderful message. Yes, I do tell everyone my kids are my inspiration,(you know what I named my daughter ‘Spoorthi’ which means Inspiration). Yesterday we were at Piano party and I was talking to a mom and Dr.I told everything about my problem and then I said, everyone has complaints with their teenagers, but I don’t. My son he is hard working, understanding, helping around the house, helping my little daughter, I have to Thank him for considering to look the local colleges, we are lucky that we have wonderful Universities like Temple, Drexel, PennState(he has been accepted already, but he says it’s for a backup mom.) He is still applying for the colleges of his choice and I hope he gets into them. I’m confident because he is an honor student, won a National Merit Scholarship,awarded for getting perfect advanced subject scores. So, I’m very proud of him. I can go on and on about my kids. I’ll talk about my daughter another time.

I want to Thank You all the people who have send lot of hugs and some of them private messages who haven’t been in touch with me because they were having hard time with the ‘beast’ and some of them also diagnosed with other problems. I read all the replies to Lisa’s and my post yesterday. Some of them are apologizing for not being very good with words, we know Vonnie you are always praying for everyone and it means a lot to us. One thing I hate to see anyone apologizing feeling bad for not able to use wonderful words just like other people. Please remember everyone is special in their own way and never apologize to anyone. As I said, people must be busy fighting with their diseases or something else is going on in their lives if they don’t respond, I understand that. I don’t have any complaints against that.

*Only thing I want to stress is please let us all remember that Care Place is for everyone who is suffering with any kind of problems. And the intention of this site I believe is to support each other without depending on one person or few persons to share our feelings, fears, experiences, suggestions, advises, encouragement without any hesitation. *When we depend on few people to help in any way either it is moral support, any advise, sharing a feeling etc. and if you get help continuously from those few people, then we should also remember that they are also human beings even though they try to reach people without caring how much they are suffering. As friends we should realize they need help just like we need help, encouragement, moral strength and lot more. To avoid that kind of hurt and some people feeling that, ‘I do so much for everyone, don’t misunderstand, that’s what I like to do, but when I’m suffering why can’t I get the same kind of support?’ *To start a new why can’t we share with each other equally without putting so much burden on one person or few people, I know they love to help, but it will be easier if everyone participates, opens up shares their stories, extend their hand for help, receive the help and when others need help extent the same kind of help to others. This way no one is depending on just few people and then everyone will feel better, become good friends and lot of information comes forward which might help lot of people. *

*I also want to suggest to some people when giving suggestions for example if someone is going to have procedure it is fine to ask them to take all precautions but PLEASE DO NOT SCARE THEM WITH YOUR BAD EXPERIENCES. EVERY BODY IS DIFFERENT AND EVERYONE’S BODY REACTS DIFFERENTLY. IF THE PROCEDURE DIDN’T WORK FOR ME DOESN’T MEAN THAT IT IS NOT GOING TO WORK FOR OTHERS. LOT OF THINGS ARE RESPONSIBLE FOR THE SUCCESS OR FAILURE OF ANY PROCEDURE, TEST OR SURGERY. *

I hate to see people apologizing for not being like others. If we are all alike I think the whole world will be without any diversity, beauty, different talents etc. We do not want that. Please do not make yourself small just because you cannot express like others, you must be good at something else. The most important thing is contributing to all the friends on Care Place in their own way.

That’s why I want to suggest that whoever is in need of help, write to Care Place, share with everyone and whoever is familiar with that kind of problem, had that kind of procedure come forward and answer that person. I know we have been doing that. I have answered lot of questions about Peustow procedure, Symphcterectomy, different kinds of tests and Whipple. And I got answers to my questions from people whenever I end up in the hospital need to share my feelings etc.

I have to Thank all the people for encouraging me to go on ‘India Trip’ taking all precautions, that meant a lot to me. I can never forget that. Some people who forgot when I was returning showed concern by sending messages whether I came back or still India, feeling better or sick. That really touched me and my family members in India. My brother said, you have such good friends and support. They always worry without any family here how are we managing such a hard situation. It was a very emotional trip. I still cry remembering some times their concerns, apologizing for not able to do anything than just give courage whenever we need and that’s enough for me, Right guys? When I have such wonderful friends on Care Place why should I worry. When I found this site I was so excited and was so busy for so long writing to people, making friends, sharing stories with others, it was unbelievable for me.

So,* today I’m bombarded with lot of hugs, private messages. I wish I can use them when I wasn’t feeling better instead of getting all of them at one time. Don’t you think so? My intention of pointing out we need to share equally and more often, should make people think but it should not make them feel guilty. * As I said, I understand the situation of others. Today Mrs. Barb felt like even though she is not feeling good, she should comment or say something about the discussion. When anyone is not feeling good and if they can’t come to the computer the best thing is to rest and take care of themselves. Then when you feel like you need to express your feelings to others on Care Place or feeling lonely, frustrated, exhausted with this stupid ‘beast’ they should by all means should come to Care Place and write about how they are feeling. And I’m sure they’ll get definitely good support.

Some people try to push away their problems aside when some one is in need and give them support until they feel better because they don’t want their friends to go through what they went through in the same situation not getting any help in their past. But when the friends feel better they should try to find out the friend who helped them how is he/she doing and if they want help should help them.

I’m not perfect and I just put some suggestions because this place should not become like more people depending on just few people for the support and then the intention of site will be totally lost. I know some people do not agree with me or think I’m imposing my ideas on them. I think I have every right to say that recently the Care Place has not been that active so what are we supposed to do to help each other more. *I came to know that some people tried to pull away their profiles and get away from this place because when particular people knocked on every one’s door and didn’t get any response wanted to get away. Then luckily they got response from one or two people and they decided to give it another try. See that’s what I don’t want to happen.

Enough my preaching guys, if you are all feeling like that. I need to get back to my bead work as I have few orders to finish for Christmas. Thanks Jewels, Lisa and Truffles for encouraging me to keep going because I was upset for not getting enough orders and you all said, everything will work out for me and now I am busy with work and worried whether I can finish them on time or not. So, if you don’t see me couple of days don’t worry!

I hope everyone should have more and more good days than painful days. Please try to control yourself with the all the wonderful food which we will be surrounded this season.

If we want to stand firm everything is possible. And I can understand if anyone wants to taste because the whole yr control and food is something which we are supposed to enjoy, so even if you eat better careful of the amounts and do not forget to take enzymes, if you end up with the pain please take good care of yourself dear friends.

Lots of love and hugs.
Durga.

#20

You go girl, you are right on track and i agree with you as I am guilty and could see myself in many examples you gave ! This just gives me strength to hopefully be a better CP person ! About your bead work… you can do it, just do not get stressed and enjoy it as i know you love doing it ! much much love to you Durga my girl !

love ya
Julie

#21

Hi Lisa!

Oh Hon, I’m SO sorry for all your pain that you’re having to deal with right now! Just know that you are in my thoughts and my prayers today and throughout this week!

I know that going through all those tests, procedures and everything can
be real trying, and stressful.Keep a smile in your heart Lisa! You are LOVED
SO MUCH here on CAREPLACE!!

I truly don’t know what any of us would do without your support and inspiration, and SUCH A POSITIVE ATTITUDE about it all. You are truly one
awesome person.

Much Love, Truffles 16