Hi Everybody! Updates

Pancreatitis
#1

It’s been long time that I have written anything and couldn’t even check what’s going on here. It’s been 2 months that the excruciating pain is not giving me any break. I take breakthrough medications and take rest then I feel better one day and I get up thinking I’m going to be fine from today. But I’m wrong, by night time it returns and won’t allow me to do anything. I’m getting tired of this pain and struggling with it. As you all know there is no choice as I’ve already went through two major surgeries which were supposed to take care of me but they didn’t. I had a break of few days before and after Christmas. That’s it I had enough break, the pain thought and became my friend and staying with me since then. Funny, uh!

When I can’t get rid of it then I have to think that I must have been very nice to Pancreatitis that’s why it’s not leaving me.

Anyway the recession has affected my bead work business. I have no shows, of course I have no strength too. I have lost too much weight. I still have the Sunday School taking care of kids job for 2 hrs. It’s my getting away from home for couple of hours.

I was looking for something to do from home. I found Internet Freelancing where we can submit articles and then I’ve to let all the friends, relatives and families so that they can read regularly when ever I send the link. I’ve sent to our families, relatives and most of the friends. I hope you would like to read them. It takes couple of yrs to get to a stage where I’ll get paid something per article.

Right now I have to do this trying to stay home. I can’t end up in the hospital because of deductible. Our son is in college and we can use some extra money which I can earn. When my bead work was going on well everything was fine. Of course I had to struggle a lot but it helped me financially and also Therapeutically.

Hope you guys are doing well. Since the firefly started I visited some times and I haven’t seen anyone from our group so I kind of lost interest and was disappointed thinking about the old days when we used to share about our pain and get response from the friends giving suggestions, prayers etc.
Today when I came to check there are lot of people here. I’m going to keep in touch with firefly regularly.

I’m eager to hear from you guys and also want to know whether anyone is feeling better since we last met. I know Joe has been doing pretty well. He said another lady went through the Islet Cell therapy and she is doing well too.

Of course I got all the hugs from Mystical Dreamer and Mrs. Barb, Mike 12 etc.
Thanks all of you for bearing with me.

It was hard to stay away from the people who share the feelings whenever they have bad time with pain. Getting support from each other is more important. I’m anemic and taking Iron treatments. Because of pain I had to cancel the appointment lot of times. They told me to go to hospital if it doesn’t get better in one or two days. That’s what I’m hoping the pain comes under control within 2 days and I don’t have to go to hospital.

I’m going to take breakthrough medicine and lie down for a bit.

Sorry I’ve been away from the site for a long time. So much happened some I can share some I can’t. Hope you guys understand why I was absent from the site.

Lots of love and hugs,
Durga.

The following is the site when you click on it, it will take you directly to the article. Take a peek and you can add your comments if you want.

www.associatedcontent.com/article/1578537/memorable_day_with_my_college_friend.html

#2

hi durga !!! so glad to hear from you ! i am still here ! yes i understand the amount of pain you are having as it sounds like me ! today i am going to see dr. osborne about stent placement, not sure what he is going to say ! just wanted to say hi, it took me awhile to get back on board with the new change to firefly also, the old days were so good ! love ya
julie

#3

Durga,

Welcome back. I’ve been wondering what and how your were doing. It always crosses my mind when I don’t hear anything from someone for a long time, how bad they must be.

I am sorry to hear about your pain. I will pray for you. It helps to know what to pray for.

I am glad to hear Joe is doing well. He doesn’t come to this site anymore. I now know why. No need to!!! Good for him!!

My doctor wants me to get a Puestow. My duct isn’t large enough to do that yet. So we are waiting for that to happen. But I wonder about the TP/AIT. Like if you get the Puestow, can you do the TP later. I need to ask that question. Anyway, welcome back.

Julie, let us know how your appointment goes. I will be praying for you also.

Vonnkie

#4

Well hello sweet durga :wink: I was so happy to see the hug you sent me, and =
to see you were on FireFly!!! I am sorry it has taken me so long to get bac=
k to you :frowning: makes me sad!!! I have been so very sick myself, dealing with =
ITP, Diabetes, reactions from win-rho, and this new antibotic “Avelox” figh=
ting with the hives and itching. I to am sick of being sick! I did have ano=
ther win-rho treatment 1 1/2 weeks ago,and no reaction that time! I now kno=
w that I can’t take Lyrica or Avelox, both make my throat swell, and terrib=
le hives/itching…I think it’s my body lately it’s been a good two months =
since I have felt somewhat good, darn-it!!! I do believe the weather change=
s have a lot to do with the way we feel. This last cold front that came thr=
ough, about killed me! so really I can’t stress enough how much the weather=
has to do with how we feel. I sure hope you are doing better, and not in =
the Hosp.!!! You get lots and lots of rest! How is the hubby and kids? hope=
all is well there!!! Ok hon it’s time for me to lay down again, but I will=
check back in later tonight…sending you lots and lots of prayers, hugs, =
thoughts!!! With all my love, Mrs. Barb/Barb ;- )

#5

Hi Durga

Sorry you are not feeling well. Life with CP can be very draining. Firefly is certainly not a step forward, in my opinion. They certainly have made changes for the worse. Hard to navigate (but once you know where to go, it is OK). I just had my appendix out this past Thursday so hopefully that right lower quadrant pain will go away. One less pain is always a good thing. I am looking to have a gastric pacemaker placed soon in hopes of eating again. I have been lucky in one way in that the pancreatic pain has not been unbearable because I do not eat solid foods. It has been ramping up a bit these last few weeks so I believe I will go in for another nerve block soon (before baseball season, I hope so I can coach).

Please take good care and I hope the spring helps with your bead business.

Good luck and prayers to you

Teresa

#6

Terri,

Thanks for the information. I kind of suspected that. Please let me know how your daughters consult comes out.

Durga, It is so good to hear from you again. These are not easy times we live in. God is with us even during the tough times. I have always been able to look back and see just how much He did do for me during those times. I believe that we will see that after we come through this.

Love and prays to you all,
Vonnie

#7

Hi Durga,
I haven’t been on this site for awhile either. Don’t really like it as much as careplace. Why do things have to change??? Sorry to hear you are not doing well. Please keep the faith-you are so strong.
Vonnie-my daughter had the Puestow in 06 and it really helped with the eating part of the disease but she still is in pain. We are now cking other options at this point. It does lessen the amount of islet cells but it is still do able.
Terri

#8

Hi Terri,

I don’t remember how old is your daughter. Peustow didn’t help me either. I was trying to eat after the surgery but within one or two months the pain and attacks were back. I was so disappointed and didn’t want to go through any tests, procedures or surgeries. So, I didn’t go to see doctor for a long time and I was just suffering with pain(I tried few alternative medicine during this time) and I lost weight and one day I had severe attack. Even though I didn’t want to go my husband couldn’t see me in so much pain so I ended up in the hospital and that’s when I got my feeding tube so that I won’t die of malnutrition and they’ll get some time to figure out what to do.
I changed my surgeon and the chain of the hospitals. From Jefferson hospital to I HUP, Hospital of Penn and found a nice pancreatic surgeon and after waiting to gain some weight and when my nutritional levels came to normal he did the Whipple surgery. I had MRI when I met him and it showed total damage of pancreas except the tail part. He removed as much as he can which was damaged and hoped it will work out for me as 98% people get better.
Again for a month or two I was in recovery I didn’t feel anything but after few months I had a major attack that;s when they declared it as ‘Idiopathic Chronic Pancreatitis.’ I ended up with the feeding tube, a port in my neck as I didn’t have any veins to get I.V connection. Now I go to Pain clinic once a month to get my pain medication, sometimes when I feel better I try to eat the things I can tolerate and that’s what I did two months ago it went very well, which brought back the hope but again all of a sudden I couldn’t tolerate anything so I had to stop everything along with feeding tube as pain was very bad and wasn;t giving any break. I lost weight and after so many days of taking break through medication and starving ( pushing water and coconut water through the tube so that I won’t get dehydrated). I started back my tube feedings and hoping it will go well for a while and give me some strength.

Hope the other options you are looking may work out for your daughter. I’ll keep her in my prayers.
Hope her pain comes under control. I don’t know how the kids do it. We are adults and still cannot tolerate the pain and it is so excruciating.
I have my sympathy and I totally understand what she is going through.
The Spring may bring happiness to all of our friends who are suffering and gives little bit break to enjoy the beautiful weather.

Lots of love and hugs,
Durga.

#9

Wow!! I am glad that I read your replies about the Puestow. But at this time I don’t know that I have too many choices. My brother has been begging me to go to Mayo. I told him not right now. He even threatened to drive down, throw me in the car and drive me himself. Gotta love a brother like that! I’ve heard a lot of positive things about the TP/AIT. I would love to talk to some people that had it done several years ago and see how they are feeling and doing. Any ideas on how to contact those people?

Vonnie

#10

Hello again, I just wanted to let you know that some of us “older careplace” friends I know have been through this, and still are going through it…Some would be like Lisa C. Durga, omgosh my mind just went blank, but at least here are a couple of people/friends LOL…anyway just wanted to reply…Sweet Dreams and Big Hugs, Barb :wink:

#11

Hi durga, I just wanted to say HI, and hope you are feeling somewhat better :wink: I am so sorry it’s been forever since I have emailed you, been pretty sick myself, but that isn’t any excuse!!! I miss you dearly…I have sent a couple of fwd. to you, hope you got them they are very inspirational…Well it is very late, and I need to get to bed, but wanted you to know how much I miss you and think of you!!! I will email you soon ok…Miss you Bunches, Big Hugs, and thoughts prayers coming your way! With Love, Barb :wink: Oh I put your name out to a couple of friends here on firefly, as you have been very informative to me and others, so thought you could help others too…Hope that was ok…Ok good night hon…Barb

#12

Hi Mrs. Barb,

As I said, the pain is not giving me a break and I’m struggling with lot of things. It’s not only my health also this recession is having effect on our family. My small business has totally stopped and I can’t help the family that much. I feel very bad that the money that we are supposed to use for the kids and their happiness we are using to keep me alive with feeding tubes, ports, Iron treatments, expensive pain medication etc. It hurts when I can’t do something for my kids.
I think I got your FWd emails. My computer is giving us trouble sometimes. We are getting some mails and missing some mails.

I’ll check . Take care and if I have strength and time I’ll definitely will become again an active member of this firefly.
Take good care of yourself.
Lots of love and hugs,
Durga.

#13

Hi to all and hopefully a good day,
Durga-thank you for your thoughts on my daughter. I hope we can find some new info to help her. I refuse to believe there isn’t one out there-and hopefully without taking everything inside of her out.
Vonnie-please get as much info on the TP/Ict surgery before you procede, I have heard as many negative as positive on it, but I believe it is an individual decision. In my daughter’s case-her surgeon and specialist really don’t want her to do it. They are fearful of down the road problems that will occur for her since she is still young (20 yrs old) and is presently not diabetic. I have also read many have returning pain. My daughter herself does not want this surgery for fear of more problems it may create. The Puestow did help her for eating tremendously but as I said the pain decreased but started increasing last fall.
The next recommendation for her from her surgeon-he presented her case to a panel of drs. and they want her to see a genetic counsler. Since she has hereditary CP we are going to do testing to find her percentage of getting cancer with the pancreas and then go from there. If it is high, then most probably they will take it out. Will let you all know -doing this in May.
Terri

#14

Oh durga I am so sorry to hear that things are so rough for you and your fa=
mily, makes me so very sad!!! durga have you applied for Social Security Di=
sability and or SSI? I don’t know if I told you, but after fighting 3 year=
s I finally started receiving SSD. You have much more serious health proble=
ms then I do so I don’t know why you wouldn’t get SSD/SSI your first attemp=
t! If you haven’t I will do whatever I can to help you get started? There a=
re also grants out there and state help for people in your situation, durga=
please if you need help getting information or getting web sites or email =
address let me know and I WILL help you…You have been such a inspiration =
to my life and have been such a wonderful friend and confident. I pray that=
things will get better for you very soon! God works in masteries ways…Al=
ways remember that!!! Ok I know your not up to emails and responding right =
now, but AGAIN if there is anything I can do just let me know! Will you sen=
d me your phone number and address again? All my thoughts and prayers are =
coming your way! Big Hugs=20
With all my love, Mrs. Barb/Barb :wink:

#15

Thanks Mrs. Barb. That’s what I tell my family in India. Maybe we haven’t become rich like all the families who come here to improve their life style and everything works out for them and they can do whatever they want. For us and some families it didn’t work out that way but we have gained and become rich in other ways. We have such wonderful friends who are ready to help anytime, anyway etc. We are more richer than anyone else in the world to have wonderful friends who understand us, support us, want to be there for us, want to share not only happiness but also hard times in case we have any more.
Mrs. Barb I haven’t done anything special for you. I see the response from friends and if they like to have me as friend I try to help them just like our friends do for us. You are a trooper, struggling with so many health problems always try to keep in touch with friends. I am not that good as I don’t feel like doing anything when the pain is playing with my life. I love you Mrs. Barb. If I decide anything about SSD or SSI I’ll definitely take your help.

Volup, whatever I wrote was my experience about what happened after Peustow. I know your daughter has Hereditary Pancreatitis and I do not know much about it. I didn’t want to take any of it as negative message. Right now I’m not having good time and so I just expressed my experience and I didn’t want to send any negative messages to anyone. I always encouraged who wanted to get peustow or Whipple saying I have seen positive cases and I have met them so everyone doesn’t become like me. You have to have positive attitude, faith in whatever you are doing and do not think about the result. Just let the doctors do the best they can do and see how the things turn out.
I have supported lot of friends here who were going through procedures and they are scared of, surgeries having so many doubts and postponing them, looked for information and presented the facts to them. They did go through those procedures and surgeries and doing wonderful.
About getting cancer, I recently asked my pain clinic doctor who is very nice, he said, I can’t answer that. You have lot of other problems to think about right now, why do you want to waste your time thinking about another problem which has no reason right now. I don’t think about it too much but it scares me sometimes.

I’m not diabetic yet because I have little bit of tail still and it is controlling the insulin levels. Once the whole Pancreas is removed we end up with Type ! diabetes which is hard to control. Of course for some who don’t have another option they have to go through it. If my pancreas stops working and I’ll end up with diabetes it will be Type 2 diabetes which is not as hard as the 1st one.

I can’t sit any longer. I just had to clear some of the things and thank Mrs. Barb who has been so nice to be since the beginning of my journey with Care Place. I may not check the messages for a while as I have some other things to do and need to rest a lot to get my strength. Please free to send me pvt messages or who have my email address to send me mails in case you need help or someone to listen to. I’m not reachable. I may not be as active as in Care Place but I’ll try my best.

Hope everyone is having wonderful day and hopefully the spring does lot of good to all the friends who are suffering.

Lots of love and hugs,
Durga.

#16

Durga, thanks for your reply. I am not the one with the daughter that has hereditary pancreatitis. However I am waiting to have a Puestow. I am not afraid of it, but cautious. I do intend to go through with the procedure when they tell me it is time.

It is always so kind of you to address everyone and their needs. You are such a positive influence. I too feel that you have to do what the doctors think best. However, I believe that a lot of research on ones own is a good idea also. The more you know the less surprise you might encounter!!

I will continue to pray for you and your strength, finances, family etc.

Keep the Faith and God Bless,
Vonnie

#17

Oops, sorry Volup. I got mixed up. I was meant to say Terri, who has the daughter.

Hope your Peustow procedure goes well, Volup. Find all the information, don’t keep any doubts before you go through it. You’ll be alright. I know some people got better after the peustow procedure.
Whatever you have whether it’s a test, procedure, surgery please go ahead with them with positive attitude and faith, believe in the doctors who are trying to help you, you need to prepare yourself whatever is the outcome of the either test, procedure or surgery. I didn’t had this kind of info from other patients, met people or communicate with those who went through all these things. Now you know it can be a success or sometimes like mine it may not work out. But everyone is different and you have to go with the belief that you are going to get better it works out most of the time, only for very less percentage it doesn’t work out.

If you know the outcome of the procedures for different people it helps you to prepare to accept anything. I’m just putting the facts in front of you.

I’ll keep you in my prayers and hope everything is going to be alright.

Lots of love and hugs,
Durga.

#18

Mrs barb, i would like to visit with you about ssd, i have been in the system for a year now and i do ahve an attorney we are waiting on the judge to set a hearing date, would you email me with any info and suggestions ? my email is seybert1@cox.net
thanks
julie

#19

Durga,

Thanks, I agree with you 100%. I am trusting my doctor. But most of all I trust God. The peace that I have about this is amazing. It could only come from Him.

Vonnie

#20

Vonnie, Thank You so very much for the mail/information. I was like who the heck is this, then it dawned on me LOL I had a terrible dizzy spell on Sunday, so didn’t have Easter with my hubby’s family or anyone as far as that goes :frowning: I passed out, thank goodness my husband was right there or I would of hit the floor!!! My daughter brought Easter to me, a dozen yellow roses and candy she is such a sweet caring daughter couldn’t ask for a better Daughter or Husband! Anyway he wanted to take me to ER, I said no I am not going. I called the doctor on Monday told him what happened and that I was still so very dizzy, so he put me on ?-Meclizine for dissyness, if I am not better by tomorrow they want to run test. Doctor is wondering if I had a small stroke??? kinda scary…I hope you had a wonderful Easter, and All here on Firefly…Again Vonnie thank you so much for the mail :slight_smile: Sending you lots of Love, Prayers, thoughts and of course Big Big Hugs----Love, Mrs Barb…