Hello, Hugs & an Update:

Pancreatitis
#1

Hello, all:

First, I’m still having trouble with my ISP and can’t seem to connect to the internet normally-- pages won’t load, etc. I’m still trying to get the problem corrected, but wanted to try to send a quick note. I hope it will work.

If you’ve written or called, I’m still working on being able to respond-- and I’m very sorry for the long delay. Thanks so much in advance for your understanding and support.

I also wanted to let everyone know that at the recommendation of my PT, I tried going to a specialized accupuncturist (he’s from Asia, but also has an MD and PhD from the U.S.). He says that he can’t tell me what to tell you all, because what he’d do would be different for every person and every person’s specific disease and causes… but what I can share is that within an hour of some of what he did (including non-accupuncture things like injecting Xylocane with a regular needle directly into the area of the pancreas in my stomach and back where the pain’s been the worst)… along with very painful accupuncture things in my right knee, which is apparently the area that affects the stomach-- Well, within an hour and for almost a week, I was not constantly in tears from pain and even got to go out and eat a little normal food, which I did slowly and carefully, but hadn’t done in about two years. I’m excited where this might go, even though the pain got back to it’s “normal” bad ways within about 5 days. He feels he can get me to about 90% of where I should be and then be on some sort of home exercise program that should continue to help. I don’t know if anyone else has tried accupuncture, but this man was truly magic-- and it’s been so awesome to have any relief at all, as well as to be able to eat a little (I was about a week away from being put back on TPN).

The other thing is that the same night I saw him I was contacted by CBS regarding an upcoming ‘reality game show’ they’re casting for in California. I understand that auditions closed in early July but they somehow sought me out (female Veteran athlete, etc.) and, although I’m far from doing well, I’m going to try to make the trip and film one show for them. I think I will be the first in the U.S. to be a “disabled” person in a wheelchair to be on this kind of show. It will hopefully open up the door for others with disabilities. I hope I can be even marginally well enough to pull it off, but I’m trying my hardest and will do whatever I can to make it. Some details are on the web, and I’m not allowed to discuss the rest for now. I know it’s crazy, but I can’t see not doing it, regardless of how I’m doing, unless the CP gets way too painful and bad again in the upcoming weeks.

Just an update and a hello and a thank you for ongoing hugs and messages-- and I’ll get to read them finally when I can stay connected online.

Love and hugs and pain-free wishes to all!

Lisa

#2

Hi Lisa,

hope your feeling alittle better today :slight_smile: I have been thinking of you, but been down
myself…Some ol’ anyway wanted to let you know that i am thinking of you and sending LOTS of
Hugs and Prayers your way…

Love,
Barb :slight_smile:

#3

Dear Lisa,
I’m glad to hear you are having some pain relife from you doc. Also i hope you are able to go and do that show that would be great please let me know when it will be on tv. I called my doc today to see about setting up for the whipple have not heard back yet. Well i hope you are having a great day.
Hugs
Joe

#4

Lisa,

I am so glad that you have gotten some relief!!! I am a big believer in alternative medicine/therapies. The first few years I was a nurse I was in my 20’s and thought I was invincible. I didn’t use proper technique in lifting and turning patients and I was in bad shape when I went to my MD. He sent me for an MRI, to a neurosurgeon and a script for pain. Neither my primary or neurosurgeon had any answers so they wanted to treat me medically for pain. I did that for a few months and realized this was not for me. I hated being a zombie and the pain seemed to get worse.

That was the first time I ever experienced the physiological effects of withdrawal off of narcotics. I had been taking the pain meds pretty much everyday for 2 or 3 months when I decided I was done with narcotics (I was afraid to get behind the wheel of a car, I slept all the time and was constipated). One morning I decided to stop taking my pain pills and try heat/ice/advil. You would think I would know better because I was a nurse but I had no idea why after about 12 hours without my pain pills, I started
feeling like I had the flu. I had had the flu a couple of times in college but this flu was different. I had the feeling of bugs crawling on and under my skin, I had a low grade fever but was either sweating or having chills, I had diarrhea (not the usual pancreas kind), my body ached and I could not sleep.

This went on for 2 days and I finally called my doc to see if I needed to be seen. The nurse called me back and started asking me questions about my symptoms. It was like she knew exactly what kind of “flu” I had. She explained to me that I was going through withdrawal. I was so angry because the only withdrawal I ever heard of was what drug addicts go through. How dare she accuse me of being a pill junkie!!! After calming me down she explained that withdrawal and drug addiction are not the same. She explained that anyone who takes a narcotic for a period of time (one week to many months) with have withdrawal symptoms because it is your body saying I want more of that chemical/narcotic. I had never seen a patient in withdrawal from narcs and I had not needed anything for pain for any length of time until then (my pancreas was pretty stable in my 20’s).

It was at that point that I decided I would to try alternative medicine/therapy and only use narcs if I HAD to have them. I found an awesome chiropractor who not only helped me be free of back pain within a year but also was helping me with my constant diarrhea. It may sound crazy and maybe it was a placebo effect. Frankly, I don’t care. As long as I was getting relief without using narcs, I was happy. I still see my chiropractor and she is able to help me with my diarrhea at times. I tell her all the time that she is my angel. She has educated me about all types of alternative therapy and I have been seriously considering going to an accupuncturist.

You should be really proud of yourself for having such an open mind. When chiropracty was first brought to me years ago, I thought they were quacks.Boy was I wrong.

The show that CBS has contacted you about, is there away you could get your CP addressed? I think the email you wrote that talked about how CP had taken over your life way more than your paraplegism speaks volumes about our disease. I know that you are super busy and really sick so I admire you for still wanting to do the show.

Sorry so winded today. I am feeling better today and haven’t had a lot of opportunity to get online much lately.

Love, hugs and blessings to you my hero!!!
Angela

#5

Hi as you all may know, I have not been on top of my emails lately, andi am sorry for that, I am confused about a “SHOW” with Lisa??? Can someone please let me know when and where/time? I would be so greatful to all of you:) I can email Lisa just thought i would send it out here. I may have heard about something but my illness has kept me down and out of the loop,Lisa I sure hope you are getting better as the days go on, my prayers and thoughts are with you today and always…

Mrs. Barb :slight_smile:

#6

Hi, Everyone–

I wrote a huge note here earlier today and then again couldn’t stay connected, and it all disappeared, so I’m trying again. Hopefully this will post before it vanishes!

I wanted to thank everyone again for all their love, support, and caring. You are all awesome, as always!!

Unfortunately, after about 5 “better” days last week, it went downhill from there and now I’m about as bad as it gets without being in the hospital-- but I’m back at that breaking point. I honestly can’t handle much more pain and I’m on much higher doses of pain meds-- and it’s still like a joke. That’s scary in itself. I hate taking the meds so much, and while I get that it’s necessary, when I use them and then I’m still in outrageous pain, it’s just hard to even use it at all. I have to stay focused and hopeful that by next week I’ll get back to where I was a week ago, doing better (I’m still optimistic that the acupuncture will continue to work miracles). Every day I’m just staying as positive as possible and dealing with it, as always. I still follow my rule to laugh and smile no matter what-- every day. And knowing that you’re all there-- well, it makes it so much easier.

I will keep trying to reply to other posts and private messages, and I’m really sorry if I can’t get to it right away-- it’s mostly an internet problem, and partly that things have been crazy with the casting producer for the “show.” I’ve put in about 30 hours so far just in filling out applications and contracts-- all with immediate deadlines. It’s exciting that a show might actually have a wheelchair user/“disabled” person on a ‘reality game show,’-- but I realize I have to keep my life balanced and take care of myself to make it there and do a good job for them (aside from their selection of “cast members”). No real complaints, though-- it’s awesome to be asked to do this… and I’m keeping my fingers crossed that they’ll select me. As of the 33 page contract I just signed, I can’t disclose any more about my selection or the show. I promise as soon as I know more-- like if I’m going to L.A. to film this, as well as what I can disclose about the show, I’ll let you all know so you can look out for it. I’ve done some research and it looks like a fun format for a show. I feel badly I can’t say more, but it’s an incredible opportunity, medical stuff aside. Please keep cheering for me-- and I’ll tell you whatever I can as I know more and am allowed to disclose it.

As for mentioning the CP (which NPF also mentioned) if I’m selected for the show, I unfortunately won’t be able to do that per the contract I signed. I promise I will continue to do all I can in many other things I do that get publicity and attention to educate people on CP. I’ve already done several talks with groups of people who have been arrested for underage alcohol-related offenses to inform them about CP-- so I’m getting the word out wherever I can. Also, if you sign up for the NPF (National Pancreas Foundation) online newsletter at www.pancreasfoundation.org I should have an article posted there in the near future. I’m hoping to write for them monthly, in addition to adding to my website with other information. You can access my site by joining Empowerment Unlimited as a group on CarePlace.

I hope you all are having less pain than I am-- and I’m always thinking about all of you!! You’ve all become friends, and many of you family. When I read a post that mentions some way I’ve helped someone, it makes all the bad stuff I go through so worth it-- And brings back those “happy tears” on top of the other ones that creep in when it gets bad. I just wish I could take all the bad days and pain and fear away from everyone else–it’s so unfair that anyone should have this disease.

You’re all in my thoughts and I miss being able to write back to what I’m catching through email. I feel so badly that I haven’t been more available.

So, hopefully this will send this time… at least it looks like I’m still connected!

Take care and hugs and love and many thanks,

Lisa

#7

Hi Lisa ,

I hope that you are feeling better please let me know how your doing with the MD that does acupuncture. I am on liquids this weekend after having nausea for three weeks and had sharp painful attacks this week so the doctor said have only liquids and some crackers till Monday.

A friend said there is a doctor that she knows who is a MD and believes in herbs and acupuncture so I am going to see that person and see if it works.

hugs
Kathie

#8

I have become a big believer in accupuncture. I have had work done on my shoulder, hip and for “mild” pancreatic pain and nausea. The person I go to will not use accupuncture for a full blown episode. It worked somewhat for the pancreatic pain and nausea but it didn’t last long. I feel that it is always worth a try. Just make sure the person is licensed. I sure wish there was a dr. near me who was trained in accupuncture and was an m.d. Sure hope you find continued relief even if it doesn’t last. Living in pain is such hard work.

Betsy

#9

Hi, all–

I’ve been back to the acupuncturist weekly and will be there twice this week if I’m lucky-- What seems to work the best is he injects Xylocane with a regular needle right into my stomach and back where I get the pancreatic pain. I sure hope some real, lasting relief is down the road somewhere 'cause there sure have been some horrible days lately where I just get to that point of wondering how I could possibly deal w/more pain (I always do, don’t worry!).

Take care and hugs and love,
Lisa

(Still working on hugs and messages… I’m getting there!!!)

#10

Hello to everyone:

Looks like I’m finally reconnected and back in touch— and the few residual problems seem to be w/the CarePlace techies-- and they’re working on that. I’m sorry it’s taken so long to reply to messages and let everyone know what’s up.

First, I still haven’t heard from Durga. I’ve posted on the Forum, sent private messages, and will call her home by the weekend if I still haven’t heard anything. I know several of you have asked me-- I wish I had some news. I’m worried as well. Hopefully she’s just having a busy and wonderful trip.

As for my story, luckily the Cystic Fibrosis genetic testing came up negative, as did the hereditary pancreatitis tests. The only bad part is there’s still no explanation. My spleen now seems to be involved at some level… and from what I’m understanding, it’s likely not necessarily a separate problem, but from the tail of the pancreas, which has been chronically inflamed, and touches the spleen where they meet. I’m seeing my GI doc tomorrow and will get his opinion as well. The next MRCP is next week.

I’m still doing the acupuncture, and some days it helps a bit for a few days and others, like today, it seems to make all the pain in my abdomen and back flare way back up.

I also started taking Pancrelipase with meals-- not sure how much it’s helping, but at least it’s not making anything worse, like the Creon did. And at least I’m still eating a little-- still pretty modified and careful, but every sip or bite is so incredible after two years of barely getting food and lots and lots of months of TPN.

As for the reality game show, not sure what’s up yet-- I know I’d be crazy to fly to LA from Maryland right now the way I’m feeling, but it’s still one of those “once in a lifetime” things if I’m asked to go. I should hear back from the network this week and will have to make a decision one way or another. I’m really swaying back and forth from “I have to go and do it because it would help so many other people down the road” to “What am I thinking?”

For now, I’ve got to lay back down and use some more pain meds-- and just get through today and tonight. I’m sending wishes to everyone in the Group that you’re all having some pain-free times… and just letting you all know I’m thinking about you!!! I’ve sure missed everyone being offline so much and having so much trouble with staying connected so I could be in touch.

One note regarding NPF: I wrote to them in response to several notes I received about their “This Group is owned by the National Pancreas Foundation” statement at the heading of the Pancreatitis Group that showed up recently. I asked them to consider rewording this, as I believe that the members of the group feel they, the members “own” this Group along with CarePlace. I’m sure it was just the way it was phrased, as NPF is the best place out there for information and help. The first article I’ll be writing for them will be on neurofeedback and should be posted soon. As always, feel free to let me know what you’d like covered and what else you need help with.

All the best to every one of you!!! And I’m sending hugs, love, and friendship to all–

Lisa