I'm in lot of pain and need your help guys!

Hi everyone,

I’m having such a bad attack. I have taken the breakthrough medication one time and it didn’t do anything. I have to try again. As I told that we try to get the ‘beastly pain’ under control just like the ER people do in the hospitals and try to stay home. I don’t want to spend the long weekend in the hospital where nothing happens especially in the weekends.

I wasn’t resting well and just push myself to do things and sometimes when I do too much than my body can handle I get immediately the excruciating, stupid pain.

I know I can count on you when I need. So, please help me out to get through this episode. Your messages, mails, hugs everything means a lot to me.

Now I know that I’m not alone and I can count on the Support group for emotional support. I can’t sit long.

Hope you guys are having pain free night (but I’m not sure how many of you are really pain free).
Anyse I understand what you are going through. I’m almost in the same situation except the throwing up. I have nausea, the special kind of Pancreatitis pain that we all go through.

I hope you feel better and I hope all of you should be able to spend time with your friends and families not ending up in the hospitals. Most importantly relax.

Lots of love and many hugs to all of you!

Durga.

I hope that you are feeling better, Durga. Do what you need to make it through. Sending warmest wishes for a speedy comeback. Many hugs.

Dear Durga,
Sorry to hear you are having a hard time . I will keep you in my prays, I’m to have been having a bad week with pain and up set stomac I have been on the all most temted to go to the er but like you i dont want to stay for the long weekend hang in there and know you are not a lone hope yur pain is better today I will keep you in my prays, Hope you are having a good day or as best of day as you can.
Joe

Oh, hang in there sweetie. You can do it. You need to concentrate on as much postitive thinking as you can. Send it out to the powers that be to send you strength. Draw it into yourself.

You are doing the best you can. you are doing a good job. DO NOT get down on yourself. We are all here as witness. And if it is still too much, it is absolutely ok to need more help. Don’t wait too long, don’t let the agony get you to the point of being out of control. It is so much harder and drains your strength. It will be okay.

I also have had bad experiences in the ER. It is a vulnerable postion.
I have something I always do now. It is a bit silly maybe, but somehow works.

The whole time I am waiting, I concentrate on the following mantra:
“They will be kind and compassionate. They will gentle and giving”

They say that you draw into yourself what you put out there. If you put out there that you need kindness, you are more likely to get it. Like I said, maybe that is silly, but we need all the help we can get!

I wish to you all the strength I can send. I will think of you all night.
Be gentle with yourself. Now is not the time for condemnation, you need your strength.

Dear Durga,

Crap, crap CRAP!! I’m so sorry to hear of your attack - and on a long weekend, to boot. I know how you feel about hospitals - and especially on a weekend!

I started up on a Friday and waited (with no idea what was going on) until a Tuesday to go to the ER - so, 1) I was really stupid in not thinking it was an emergency (actually thought my IBS was acting up, and thought I might have a lung infection because I had trouble breathing) and 2) I suffered needlessly in that unbelievable pain for 5 days by myself.

When you said “stupid pain” it struck a chord with me - that’s what I call it - the stupid pain.

You do what’s best for you - and please know I’m here and thinking of you. Hey, I forget, did the doc put you on enzymes? I can really point my finger at that one particular thing and say it’s making an obvious difference. The pain is still there (g-d forbid I live a day without it!) but it’s calmed down noticably. The doc put me on “Creon”. Expensive but worth every penny.

Please keep me informed, I’m out here for you, sweetie, I’m surprised you have the presence of mind to even get up to type a message! I hope you get some relief soon!

Take care,
Love,
Genieanne

Dear Durga,

Crap, crap CRAP!! I’m so sorry to hear of your attack - and on a long weekend, to boot. I know how you feel about hospitals - and especially on a weekend!

I started up on a Friday and waited (with no idea what was going on) until a Tuesday to go to the ER - so, 1) I was really stupid in not thinking it was an emergency (actually thought my IBS was acting up, and thought I might have a lung infection because I had trouble breathing) and 2) I suffered needlessly in that unbelievable pain for 5 days by myself.

When you said “stupid pain” it struck a chord with me - that’s what I call it - the stupid pain.

You do what’s best for you - and please know I’m here and thinking of you. Hey, I forget, did the doc put you on enzymes? I can really point my finger at that one particular thing and say it’s making an obvious difference. The pain is still there (g-d forbid I live a day without it!) but it’s calmed down noticably. The doc put me on “Creon”. Expensive but worth every penny.

Please keep me informed, I’m out here for you, sweetie, I’m surprised you have the presence of mind to even get up to type a message! I hope you get some relief soon!

Take care,
Love,
Genieanne

Hi, Durga–

You’re a very sweet and special lady and I know you’ll get through this, as hard as we all know it can be. Please hang in there, hug yourself and then get a bunch more from your wonderful family and friends, don’t push yourself too much, especially if it adds to the flare.

I’m having one of those tough times with you, so I’m there for and with you completely. I just had hand surgery yesterday, am running fevers-- but can’t tell if it’s from the hand surgery, the central line/Port, or the CP. Also trying to stay free of ERs!

My wishes for you to feel better and have the best day possible is coming your way-- and let me know if you need to talk. I’d still be happy to send you a “Dream Fairy” for luck and love if you let me know your favorite colors.

Please take care of yourself, many hugs, and know that I/we’re all here for you!

Lisa

Durga,

I too am praying for you today. I thought you might enjoy a special verse from Plam 55:22 - " Cast your burden on the Lord…and He will sustain you.

Dear Lord,

Elevators have load limits! Bridges have load limits! Durga has a load limit, and she has reached it. You have told us to cast our cares on You, But she is having trouble lifting this load off herself. Please transfer it from Durga to You. Thank you Lord that you love us so much that we can take these requests directly to You.

Amen

This prayer was taken from a book that friend gave me called “Prayers in the Storm” by Sandy Clough

May you find comfort, lessened pain and peace today.

Vonnie

Hi Durga,

Sorry I have taken so long to reply, I have had various types of block including the celiac plexus block on several occasions. My physician also will not do the permanent block because of the same reason that you stated. I have had over 5 at different times during the course of my disease. Most were done when I was hospitalized and the actual procedure was done in surgery with anesthesia standing by. It was a mild form of anesthesia, I was awake the entire time and the only time I was uncomfortable was the last one I had. The discomfort was in the form of pressure and it just felt different to me. I believe he told me that he had attempted using a different approach. If I recall, it seems like it did help immediately after and maybe for a week - I do remember that they told the people in recovery NOT to elevate my head because it might cause the medication to go elsewhere. This particular physician was deployed to Iraq and has since been redeployed. The pain specialist I see now told me just last month that he did not believe that the celiac plexus block was appropriate for long term pain management. I was somewhat surprised but he said that he had had little success in long term chronic pain management using this block. That is his opinion…

But I am of the opinion that until you try something - that is reasonable - you will not know if it works. Everyone is different and responds to various methods of pain management. I am sorry that you are having so much pain and cannot sit for very long. Please know that you have a lot of support here and if you have any questions or just need to vent - just send a message.

The procedure I did not think was bad - but take your list of questions and if you do not feel comfortable, the final decision is up to you. Take care…Drm

Hi, Durga,

Just wanted to send a note and let you know I’m thinking about you and hoping things are getting better and the pain is subsiding a bit. It breaks my heart to know so many wonderfully caring, sincere and loving people are suffering so. I wish I could wave a magic wand and make it all go away.

When I’ve had pain, I massage the area in a clockwise circular motion and visualize a clean, clear, healthy, white feeling inside – breathing and focusing on being quiet inside and in my surroundings, too. I also take small sips of luke-warm green tea which seems to soothe my stomach and help the pain.

Please know I’m keeping you in my thoughts and am sending positive thoughts of good health and freedom of pain your way.

Hugs,

Charles

HI Durga,
I’m hoping your feeling better now and the attack has passed. Try as best you can to stay hydrated, and get some nutrition. Special K has a protein water that I used when I was on liquids only, it doesn’t taste bad and is clear. Know that there are people thinking about you and sending positive thoughts to you.
Liz

I am so sorry, as would anyone be (only I and others her have the true sense of what you are ging trhough, which makes our"sorry" more powerful than the average person) that you are going through so much pain. I hope that you got to stay homr for the weekend. I also thank your for remembering me in your message specifically as it was quite appropriate.

I began my last attack on Mother’s Day! It just kind of simmered for a while and got worse and worse until the Monday before Memorial Day weekend. By Friday, I was to the point that I could no longer drink water without excruciating pain, could no longer even take my medication beyond my Fentanyl 200 mcg/hr dose and, for the first time in a few months, I was actually vomitting as well. I was so sick that, by the time my wife came home, she was thinking that I should go to the ER, but I was so determined to stay home for the three-day weekend (our son was going out of town for the weekend on a “road trip” with 3 friends to Montana to buy fireworks) as we could be alone for a while. I was in the ER on Friday at 9 pm! So sick, dehydrated, nauseous (had no more to throw up!) and the pain was just like a big pancreatic attack like I get every 7 weeks, give or take one or two!

Well, the “focus” in my HMO electronic file now contains doctor’s orders for the times that I go to the ER and request the “focus” directive. It tells doctors to immediately admit me to the hospital for as long as I determine (as my own body determines) and to put me on IV (I get potassium added so that I don’t get horrible muscle cramps and spasms), 2-4 mg of dilaudid every 4 hours, and that I be put in as NPO (nothing by mouth). This was the first time I went in with this “focus order” as it was only put there on the Monday before Memorial Day weekend! It worked and I was so happy to be treated with the dignity and respect that I deserve when I go in there. I am no longer treated like a drug seeker but as a person who really needs help. This, to me, is a privilee to have that I will not abuse. So few have these types of orders for the ER in the entire Kaiser Health Care system. I fought a long time to get it and, thanks to my doctor seeing that my health has so deteriorated over the years that this was a necessity, I am so grateful to have it.

Some of you out there may try to seek this if you need to go to the ER a lot and your doctor will support you in your actual needs.

Take good care and all of you are in my thoughts.

Anyse

Karis-Matic,

I gave Kaiser that chance for 12 years and then I took my own healthcare and management into my own hands. After I did that, I got the care and compassion that I needed. Sometimes just “good meditaton” does not work on an empire more dedicated to cutting costs and care to its members/patients. Sometimes, as I did, you’ve got to “work the system” to your advantage because too many doctors are afraid that you may become too “expensive” for the “business” that HMO’s are in–to make money (even if they are non-profit–as Kaiser is!). I remember how you were a year or so ago and the hell that you went through when you first had this terrible illness. I reached out to you then to help you as I still do today. I am compassionate, friendly, loving and caring with ANYONE with this disease. However, there is some BUSINESS that HAS to be done to make one’s life better and proactive steps are not against positive meditation or thoughts. Therefore, they can become PART of ones sense of compassion in the world as one makes sure that one WILL be taken care of when the time comes. Meditation and proactivity are not antithetical, thank goodness.

Anyse

Hi hope you are doing better. My prayers and thoughts are with you.

Dear Durga ,

I am so sorry your in so much pain if I could take the pain from you and everyone else I would this disease isn’t fair. I hope that God would send a doctor that would know how to solve this pain and pancreas problem in everyone. I hope that you get some relief

love

Kathie