What's happening to Care Place?

Pancreatitis
#1

Hi Guys.

I Thank each and everyone from the bottom of my heart for all their ‘HUGS’ that come continuously. That’s the only thing I see on care place. Of course close friends are still in touch with the pvt messages. I know they switched the discussion place and we are not getting like before the discussion topics in the emails.
Sometimes I do visit the Pancreatitis to see are there any discussions. NOt many like before to say.

I just returned from the hospital. Our move from one apartment to another little bigger apartment was successfully done last week and within couple of days I ended up in the hospital. The packing, cleaning up the clutters, moving and on top of that the heat wave, oh my god, it was too much to handle for me. It was excruciating, horrible, unbelievable pain. It took almost two days to get it under control with PCA.

I’m glad I’m back. But the minute I walk in home it starts again. Then I wish I should have spend few more days in the hospital I need break from doing things.

So many things happening for the past few months. WE tried to buy a home not a big home, a town home just so that I can handle with the help of maid. But with the current situation of the house market it didn’t work out, it was a big disappointment but then we found a little bigger apartment because we can all use more space. When I was in the hospital my husband with my kids did my daughter’s room and started my son’s. So it takes a while to settle down. I want to relax for a bit and then start unpacking. The first day itself I put everything in the kitchen as it is hard to do without anything.

OK guys! enough about me. How are you all guys doing?
How are you finding this summer? I find it so hard. When I go out I feel like I can’t breathe. I can’t wait it to over but then the kids go away to schools then I’ll be alone. Summer is the best time if I don’t get into trouble because I love to spend time with my kids. It’s hard when we go out. We are planning to do at least couple of trips with kids. WE did in April couple of them. Hopefully I’ll be OK.

Please let me know how you are all doing and again Thank You so much for all your HUGS!

Take care of yourself for heat and do not get sick. Drink lot of water, liquids which keeps you away from dehydration. Do Cool Things and Be Cool!

I’m hoping Summer is keeping everyone busy and slowly they’ll come back to the discussions and helping each other like we did before. Let’s keep this going on guys. I heard that our group was the one without any problems and we do really help.

Lots of love and hugs.
Durga.

#2

Hi Durga,

nice to see you on, I am so sorry I haven’t even went in and checked my private messages :frowning: I have been so darn sick, and depressed! I finally got a hearing date for SSD, and it’s sometime in Sept. My long term benefits run out the middle of Aug. don’t know what we will do, my husband is so worried about loosing every thing we have and have worked so hard for. He is looking for a part time job, but no luck yet! anyway to all of you here on Careplace I want to say I am sorry for not being the supporter that I normally am, just sick! I had my MRCP/MRI with 2-8oz. of pineapple juice, and secret in in IV form I have been so sick every since I had that darn thing! Has anyone here had this type of test done? something about looking at the inside of the pancreas and ducts, oh and also liver and where my gallbladder was? The acid reflex has been so bad that nothing is taking it away-grrrrrrrr…I go back to see my IM in Omaha, Ne next week so hopefully I will have answers! The MRI place said I could come get my results, but I guess I am a little stressed out about it, I guess what we don’t know is better? who knows…Ok I will sign off for now, and again thank you durga for all your support and private messages :slight_smile: and to ALL of you here on CarePlace Thank You So Very Very Much for understanding my absentee.

Oh one more thing for those of you that don’t know about my blood disorder (ITP)the Win Rho transfusion that I have had done 2 times now is helping somewhat-I went from 17K, to 32K and then up to 41K, 52K, 61K, and then fell very very low again…I go back on Thur. for another blood draw to see where that at a week later! Keep your fingers crossed for me that they didn’t drop even LOWER-Please…I am at 36K right now…Ok I think it’s time to take my nap for the afternoon, so hope to hear back from you all soon…Durga and River I will get to my private messages this afternoon sometime ok…Thanks for all of your support and hugs :slight_smile: I sure hope you have a pain free day and evening…

Big Hugs to All-
With all my love, Barb aka-MrsBarb :slight_smile:

#3

I think we should all work to revive the life of discussions on careplace.

For me personally, I haven’t had too much trouble since being in the hospital since the end of April but I also have been playing it really cool - like a turtle in their shell. My friends and family are always asking me to do stuff with them but I am sooooo paranoid of getting sick that I just end up in isolation outside of my job.

The beginning of May, the week after I got out of the hospital, my job put me on probation for missing too much work. I could fight them on it, since my doctors have all filled out any form that my employer has asked them to complete. But, I just don’t want the added stress of defending myself. The bottom line is that since I don’t have an illness that is visible to them and I don’t want to tell them that my number one symptom is diarrhea and vomiting - they just assume that I am a hypochondriac and treat me like I am just a slacker looking for a reason to get out of coming to work.

So, since May, it is kind of like anytime I feel a little sick - I just ignore it, hoping it will go away. I would love to be one of those people who never misses a day of work - and ten years ago, I was that person. But, I ignore it for a while, then a week or so goes by that I am dragging myself into the office and not really getting anything accomplished because I am in pain, haven’t eaten anything and worried to all get out - and then I finally crash. I am thankful that I don’t have CP and this time my “crash” consisted of two solid days in bed but I hate having to call my supervisor and tell her that I am not coming in - I know that people are judging me.

And, being single with all this is soooo hard. I have a mortgage, my monthly pharmacy bill and the rest of the economic hardship that everyone is dealing with. I am blessed with generous health insurance that has a stop loss amount but the trade off is that the prescription coverage is crap. Since they put me on probation for the time I missed, I also didn’t get the July 1st annual raise that everyone gets. Sure it is only 2%, but it is something, right?

My doctor in Omaha has scheduled a visit to the Univ of Minnesota for me in September. I will have the MRCP with secretin, followed by an ERCP the next day. Those are both firsts for me! My mom will be with me but I am scared of getting sick while far from home! My schnauzer will be back in Nebraska - how is she supposed to nurse me back to health from there? hehe.

Amanda

#4

Hi Amanda,

how are you…Did you read the post I sent out earlier today? I had that MRCP with secretin done last Thurs. the only thing I hated was drinking 2-8oz. classes of 100% pineapple juice, and drink quick! Everyone is different, but the IM (Hutchin’s) in Omaha ordered this for me as well and man, I have been sick and have had nausea every since! I go back to Omaha on the 4th of Aug. to see if I will have to go through the ERCP, I sure hope NOT! anyway good luck to you and I am sure your doggy will love you to death when you get home :slight_smile: Oh I also have ITP and acid reflex which could of caused this sick feeling and so tired feeling? Stay positive and all will go great for you :slight_smile: Big Hugs and be sure to let us know how your doing ok…

With Love, Barb/aka MrsBarb :slight_smile:

#5

Hi, Durga, I too have been guilty about not posting much (other than last Friday. June was the worst month I have had since I was diagnosed. I am still a relative newbie- only a year and a half since I was diagnosed. I can tell that it is slowly getting worse. The only saving grace is that no hardcore procedures have been done to my pancreas yet (MRCPs, stents, etc…) and I refuse to go to the hospital unless I need hydration. I have been very close a couple of times, but have not had to yet.
I will try to be better about posting here, but on really bad days, I don’t even have the energy to do stuff online.

Love and hugs to all,
Warren

#6

Hello everyone,

It sure is good to hear from you all. Even if the news is not all good.

I have been doing pretty good this summer. Since Jan. actually when they removed my last stent. Last year was awful though. So I am trying to take good care of myself so I don’t have to go through that again anytime soon.

I did find out a couple of weeks ago that they think I have fibromyalgia now. I thought I was too old, but I guess there isn’t any age limit.

Durga, it sounds like stress is a major factor in your pancreatits. Me too. I have to be very careful to not put myself in stressful situations. I know that is a trigger for my cp.

Barb, I hope this finds you well today.

Warren, good to hear from you friend.

The same to everyone else that has checked in.

I know we all enjoy a good funny story so thought I would share this with you.

We have a dachshund. We were walking through town and she saw two dachsies about a block ahead of us. She drug us as fast as she could to catch up to them to say hi. They didn’t much take to her, but we had three daschsies and about 10 people all gathered around telling and sharing daschsie stories. One they have now or had when they were kids. It was quite the scene. People driving by were slowing down to see what the commotion was about and our little group of people were smiling from ear to ear.

Keep the Faith and God Bless.

#7

Thanks for the smile! Jackie :slight_smile:

#8

Hi Durga:
Long time no talk! Sounds like you’re dealing with the heat as most of us, “not well at all”. Actually, it has been rather cool here in K.C. thus far with a few heat waves tucked in here & there but nothing
like what “the usual” is this time of year.

Yeah, I miss all of us too and we did seem to get along very well with one another other than an instance or two when someone would get all fired up and need to vent some, nothing like one site that I frequent though. I do a lot of reading on that one, guess you could call me a “lurker” but that’s okay, I would rather lurk than get ganged up on as actually did happen to me once upon a time. I do tend to spend more time on their pancreatitis websites for their knowledge and I have gained a lot of knowledge on this pancreatic road that I unfortunately found.

Where & why did you move Durga? Did you travel to your home
in India this year yet? I’m so sorry to hear that you still struggle
with your disease but there is always hope and there really IS
ALWAYS HOPE! Do you ever talk to Lisa? I sent her an e-mail recently but haven’t heard back. I have her in my prayers, as well as you also.

Take care Durga & may God bless you & your family!
Grace

#9

Hello Grace

how are you doing? well me not so good :frowning: It was sure nice to see you post it’s been awhile? I do the same thing lurk around, don’t really post to much anymore, but sometimes. I email or posted today when I seen Durga on, and I have a few private messages that I need to read, but it’s so darn hard when your sick, as you probably understand :slight_smile: I had a MRCP/MRI done last Thurs. and have been sick every since! don’t know if it was the pineapple juice I had to drink or the IV secretin they put in, but wow.

I been taking my blood sugar levels again and they are way high again, just frustrates me! every time I go to the doctor it’s 20 bucks every time-grrrrrrrrr. I finally got a court hearing for SSD it’s in Sept. so maybe the judge will see how sick I am and what my life has been over the last few years! I can pray anyway! Well shoot me an email when ya can and let me know how you are doing ok…Big Hugs and Hope you have a pain free evening/day…

With all my love, Barb/aka Mrs Barb :slight_smile:

#10

Hi gang

My summer has been FLYING by. Cameron had baseball camp then he and Steve went to New York to race with a friend (Steve builds racecars) and then Cameron and I went to Cub Scout camp. However, Doc K and Doc Hemacha are very concerned about my weight loss. I am down to 103 lbs (started at 155lbs in August of last year) and can not eat solids. My pancreas is actually the least of my problems. Doc K just keeps up with the pain meds and CPBs so that is OK. I also have gastroparesis and now they have discovered I have an esophageal motility disorder. The plan is to start TPN to gain weight and then send me off to the Mayo Clinic. I am feeling good, though, almost totally pain free. Then again, I don’t eat solids so the pancreas is getting a well needed rest.

Keep the notes coming and lets keep CarePlace alive and well for those who need it. Good luck to all of you who are having difficulty with SSD and employment. I must say, I am lucky in that I can control the pain and nausea with meds and have not had to take time off from work, except when I have been admitted.

God bless all of you

Teresa

#11

Teresa,

You are an inspiration to me …and all of us! Bravo for your will, attitude and loving spirit. I am so glad you are pain free. I am praying for you to be able to eat solids and put on some weight!

God bless!
Jackie

#13

I agree with all you have said, Amanda!

Hugs,
Jackie

#14

Hi everybody,
I guess I’ve disapeared lately too. It’s too hot, I can’t pay my bills, I sleep 12-15 hrs a night but can’t seem to fall asleep till 12-2. UGG! I still check care place now and then but I’ve been to tired to reply, or to dopped up to comprehend.

I just hit a huge milestone… 4 year cancer free (pancreatic cancer) I should be siked, but I still feel sick.

Ugg enough moping, I should just go watch finding Nemo, especiall the part with mr grumpy gills and mount wanna-hauc-a-lugie. Now that got a smile.

Now I’m going to snuggle with my puppy and try to get some sleep.

I hope tomorrow is a better day - Patti

#15

Patti -

I never knew that you had pancreatic cancer. The fact that you are still here 4 years later is amazing. You must be a really good fighter and you deserve to get all the rest that you want!!

Life will never be the same as it was before you had pancreas problems, but there are still puppy dogs and funny movies that make life grand.

And remember, if Finding Nemo doesn’t get you smiling, get yourself a copy of Wayne’s World.

Amanda

#16

Oh my gosh patti, congrats on 4 years, you are a miracle ! Just try stay positive and focus on the good things in life, I know it is hard to do when one is sick but I am so glad for you my dear ! Hang in there !

julie

#17

Thanks for the support :slight_smile: I have been feeling much better than I was when I wrote my last post. I guess I just needed to have a grumpy day… and it seamed to help, I got it out of my sysyem. I know that I am very lucky to be alive and that each day is a gift, some days I just need to say “enough is enough already!!!”

I hope you all are having pain free days!!!
Patti

#18

Hi guys,

How are you all? It’s nice to see one by one coming out to tell their stories of what’s going on. First of all, Patti, You Go Girl!
You are so brave and we are so lucky to have you with us. Get enough rest and take good care of yourself dear. Everything is going to be alright.

We took our son to NYU on Sunday. It’s one of the hardest things we have done in our lives. I was sick, I still get attacks, I can take all that, but not seeing my little boy everyday is such a hard thing for me. I know every family goes through this kind of change and after some time everyone does well. But until then it seems like it’s never ending. My daughter is missing him so much. He was her role model and loved to do everything with her. And when he was here when both of them play, have fun, sometimes argue, fight - the house is full of noise and I used to love every min of it.
Besides he was so understanding, compassionate, almost played role of an adult. When he calls I talk to him, ask him what he did and then tell him he is going to be alright. I don’t want him to know that I’m going crazy, he knows that I’m missing him and he knows it’s a natural feeling.

We don’t know how we spent one week. He is coming tomorrow for the long weekend. I can’t wait to do all his favorite things. In case I won’t able to do I know he understands. He was always there to remind me not to do too much and rest before I feel tired or get sick. I feel like my big help is gone. We didn’t try to take his childhood away. Whenever he wanted he went to sleep overs, field trips, movies with friends, learn his favorite things like Piano, Guitar and read his favorite books. Write beautiful stories, record his compositions etc.
We are so proud of him and I’m sure he is going to make it.

My pain since last month’s hospitalization is not getting better. Couple of days if I feel ok I think it’s going to give me a break and it hits me and I won’t be able to do anything which frustrates me. We still have so many boxes to open as we recently moved into a new apartment.
I want to do slowly and not rush and I’m glad that all my friends understand. Some of them wants to help too.

Coming to the employment problem for Chronic Patients like us I can totally understand. I don’t understand how people are still able to work with this horrible disease. HATS OFF TO ALL OF YOU! Especially if they are single dealing with the disease and trying to keep the job so that they get medical insurance. And when I hear some ads that they are helping so many people I think about all the people who are struggling who are alone and sometimes not just one health problem but lot of health problems and one of them terminal illness, no one to talk, no one to help them, do not know how to pay the bills, sometimes give up and stop treatment because they know it’s not worth fighting as they are so depressed. I think everyone has the right to get better and get better treatment.

Lot of people are looking forward to the change of Govt is going to bring change. I’m not sure whether it’s going to happen or not. But let’s hope for the best.

I’m still doing all part time things because I don’t have to worry about the medical insurance as my husband has it. I try hard to continue all my activities so that whatever I can contribute to the family it will make me happy. The beading thing helped me to get my confidence back, now I have a Sunday school Childcare job, weekly once, I’m going to do few shows from this yr because I’m not able to stay for long periods of time in the shows like for the whole day. I’m going to try in a Child care from next week couple of hrs as aide to the teacher but it’s everyday and it’s early morning from 7 to 9am and I thought I can come home and take rest. I’ll have time for other things. I want to spend more time with my daughter.

I think 7 weeks ago I started doing Internet Radio Program for Indian Radio Station picking up my favorite melodious songs, talk about them, commentary of 2 minutes and I do one hr program. It keeps me real busy. I love this kind of work. I’m trying to get back to writing. The Radio Program enables me to share my ideas and opinions with audience. Within 2 weeks the program became popular and they have ads in between the program. I talk about the issues too. I picked a song which has beautiful meaning and the character has terminal illness and the song is in the back ground. I talked about Randy Pausch, Pancreatic Cancer and the Idiopathic Chronic Pancreatitis.

I am not bragging about the things I’m doing. All these things are happening because I have lot of support from family and friends. I have wonderful Therapist who encourages me to continue or try something new if I make it,that’s fine if I don’t make it, it’s not the end of the world. Now I have got used to this attitude so much so I try and if I can I’ll be happy and if I can’t I think about the things I do and my situation.

About my pain it’s still the same. They cannot increase any more medicine and I don’t think I want to go for any more procedures. I take day by day sometimes hr by hr. That’s all. Sometimes I lose control and scream saying why do I have to live going through so much excruciating pain which is hard to explain to even family or close friends. I yell at them saying just because you don’t know how it feels it’s not fair to ask me go through this hell for so many years. When I feel better I apologize and tell the kids that I really don’t want to die and I can’t wait to see what my kids are going to become with so many talents and having wonderful kids like them who wants to leave this world. My son can understand and my daughter doesn’t feel better until I talk to her.

AS you are all my friends and we share almost everything that we go through that’s why I am sharing all these things with you. There are some good things happening at the same time I’m getting tired of this stupid pain.
But I know we can make it because we don’t take things for granted, we are special people and know the value of every single thing. We are getting stronger and stronger, I know sometimes it feels like we are getting weaker and weaker.

Today was ok and I don’t want to think about how am I going to be tomorrow. I’ll think about it tomorrow.
What I’m trying to say is I’m going through all mixed feelings, some days are ok and some days are so hard to get through.

Anyway I’m going to stop now. Please remember I’m here if anyone want to share anything and I keep all of you in my thoughts and my prayers.
Lots of love and hugs to everybody.
Durga.

#19

Durga

I am so glad you are keeping busy. That is what keeps me going. I am lucky that I am still able to work full time plus I have my scouts, baseball, and religious education. And in my spare time, I help out with our local Lions Club. Are there days where the pain is so bad that I want to just go to bed? Sure there are but if I do that, I get depressed. WRT pain meds, where are you at right now? I see you mentioned you do not want to increase them or have any more procedures. I currently have a 12mcg fent patch plus Vicodin ES up to 6 times a day. Because I am about 7 weeks post CPB, the pain is beginning to ramp up again but Doc K is not so comfortable about doing these blocks Q2Months, which is why he is sending me to the Mayo Clinic. Now, rumor has it that the pancreas eventually burns itself out. Doc K is not so sure that this occurs but, believe it or not, I am hoping it is true because once it is burnt out, the pain goes away (but then the diabetes becomes very severe).

So your son is away from home? I dread that day. Cameron is only 10 and I so enjoy seeing him everyday and watching him grow up. I was just in Las Vegas for a week and I missed him so much. The times I am in the hospital make it worse because I can not see him all the time.

Anyway, prayers for continued success with your radio station and hopes for pain free days and nights.

Teresa

#20

I know I haven’t been on much this summer. I am so sorry for that. The tragedy of losing my brother in law was so sad. Last summer I thought I was losing my husband. Thank God he made it. Still taking his insulin and enzymes. Life without a pancreas is different.
I am so sorry that I haven’t been on more. I do think about you guys all the time and you are in my prayers daily. I am so proud of all of you. You have so much courage and wisdom.

God Bless all of you,
Hugs love and prayers,
Sammi ~

#21

Sammi,

I am so sorry for your loss and all your trials. Prayers are with you!

Jackie