Life and Tough Choices
I've posted here before about my health issues. In short, I have Chronic Pancreatitis and it is really starting to kick my butt. It is horrible pain and nausea every single day. I'm tired of hurting, I am tired of fight it, I am just all around tired. But, I'm not giving up. My biggest fear is that I will look back on my life and feel I wasted so much of it on the not important stuff.
My disease is progressing and I'm having more frequent attacks. This means more ER visits and dr appts. More hospitals and needles. Hopkins has started to do testing to see if I meet the criteria for more drastic surgical measures. It is scary, terrifying actually. It has made me really look at my priorities and what's important but figuring out how to adjust things so it works out is hard.
My job is of course not pleased I am out so often and they are pushing me to apply for disability retirement or to resign. Not in am illegal sort of way, but more of a "these are you options". I do for sure still feel pressured though. I'm only 27 years old. It is just hard to imagine giving up my very good federal job that I worked SO hard to get. I worry about the money too.
But, do I want to live my next however many years miserable? The stress is making me more sick and triggers my attacks. What is so much more terrifying than a horrible disease is thinking that I am squandering away my health trying to hold on to things that aren't helping me be as healthy as possible and I am missing out on the important things.
Any words of wisdom?
No words of wisdom, but many, many virtual hugs. Please feel free to turn to COTH anytime you need to talk.
I was diagnosed with interstitial cystitis about 12 years ago-it was a rocky path to finding the right meds.Luckily I joined a support group which helped connect me with the right doctors and medicine. My pain varies every day and it has affected my life-but I fight to keep riding(I do endurance). It helps that I work from home and can work around my illness. Yoga has helped me deal with the stress. How successful are the"drastic surgical methods?" What is the success rate? I take tramadol for pain-It dosen't affect me like some of the stronger meds do. You need to make some friends that are dealing with this and find out what works for them. Find the top doctor in research for this disease and go see him/her. Put your game face on and start fighting! Pm me anytime.
Arabracer has great suggestions. Would only add speak to your doctors/doctor insurance team - they know a great deal about corporate and government insurance requirement. I was surprised at what the 2 entirely different DR's knew about my company's requirements when I had surgery in 2000 and 2002.
Also consider speaking with an attorney about your rights and options given your current circumstances. While I have to agree with your employer that they need someone consistently available to do the work. You also have options and rights. Especially as you have a defined illness.
Good Luck and I hope things work well for you.
I'm so sorry to hear things are getting worse for you. I just came home Sunday from hospitalization number 13 in the last year for the same problem. I feel useless, worthless, and like I have no quality of life. I'm no good as a wife or mother, and because I can't work DD can't ride and show. My paycheck paid for all that. A couple very generous COTHers have offered to let her hop on their horses so she can sit in the saddle still, which is super nice, but of course trying to get her there when I'm so sick is a mess. We've been offered a free lease on a super jumper for the year, but will have to turn it down because the board, shoes and lessons are out of reach with only one income.
Originally Posted by SFrost
I can't go back to work. My SSDI application was denied as I was in the hospital so many times after I filed it that I didn't get them all the forms and records they needed. Now I have to go through the appeal process. It is overwhelming.
Because my lipase isn't always elevated (normal with chronic pancreatitis) when I wind up in the hospital, ER docs sometimes equate me with being a drug seeker as they aren't familiar with the differences between acute pancreatitis and chronic pancreatitis.
I have my first appt with the specialty clinic at Hopkins on the 28th. I hope I can stay out of the hospital between now and then. Please LORD.
Sounds like you and I need to get together for lunch and commiserate. I wish I could just undo this burden on my family. I just want to see my daughter back in the saddle and enjoying the show circuit with her friends. She's never complained a word, not ONE, but I have caught her crying. I want to see my son happy again. He worries about me and I can't make him un-worry. I wish my husband had a partner and wife who could support him and be a help mate and not that woman he has to go visit in the hospital all the time.
Anyway, enough of the pity party. Maybe instead of lunch we need to go on a cruise!! Let's imagine warm air and sunshine, and tanned pool boys delivering us a fruity drink with a silly umbrella in it.
I KNOW things will get better. That is what we need to hang on to, you and I. Next year we will look back and be grateful that we are in a better place. This can't be forever. Right? So you prop me up and I'll prop you up and somehow we will muddle through. I don't have a single word of wisdom but I completely and totally understand EXACTLY how you feel and can offer you the utmost sympathy.
Thankfully I do have the the the best doctor. (We had a rough spot but after I really explained how awful my quality of life is and showed him a journal of my pain, he got on board for a long term plan.)
Surgery wise....80% with the older things like the Whipple, if we I qualify to have the pancreas removed and the islet cells transplanted, it just depends. the whipple and those types work for awhile but eventually the issues tend to come back later. The removal....well, that's kind of an unknown. People tend to respond well but it is fairly new, it started in the 70s and but it has just more recently really more widely practiced. I have the utmost faith in Hopkins, but will still seek a second opinion before going crazy.
I have found others like me out there. They are wonderful and really helpful. But each person has such a different experience.
I could not work and likely starve off bigger surgeries for several more years but how does one make that call? I'm miserable working, being stressed by it and being unable to actually take care of myself. There are some days honest to God I walk out the door without my glasses and it isn't until I get in the car I remember, "Oh guess I need those". That is how exhausted I am, I can't even remember that I can't see!
I do refuse to give up riding. Even if I have to go out and just walk bareback twice around the ring, I am going to ride.
They are looking at other factors that are making my pancreas worse too. Testing for cystic fibrosis and a whole list of other awful diseases that I am quite certain that I have every one. Not really, but I think the cystic fibrosis mutation is quite possible and makes sense. My pancreatic function for digestion is a whopping 17%!
Oh yes, I know the non-elvated lipase issue all too well. It is awful that I pray they find it elevated when I go to the ER. I had Hopkins write me a note, so if it ever comes to that I hope it works. Thankfully, they have not questioned me the past 2 times.
Originally Posted by alittlegray
I am so sorry about the SSDI. I have heard that is a tough process and people have to apply several times. It is so unfair. Who are you seeing at Hopkins? Prayers for you that you are hospital free until then!
I am SOOOOOO glad Hopkins is proceeding with additional testing for me. I know something is seriously amiss because of the continued pain. Interestingly, my ERCPs show CP, I had an EUS that was normal, but the secretin test they did with that came back with 17% function. Oh, and I have delayed gastric emptying with liquids not solids. AND I keep gaining weight! 30 lbs in 6 months. I'd like to blame the SSRI (Zoloft) as that is the only change, but I don't know. They swear I am eating KFC and not telling them but I assure everyone I am not! I throw up most of what I eat. (TMI sorry) They are scratching their heads saying the weight is atypical and they don't know.
Has not working helped you at all? Outside the stress of money that comes with it, I mean. Is it easier in terms of getting to rest and take care of you? This is where I struggle. I don't know if this is best. If the $$ weren't a worry I would quit tomorrow and never ever work again. I would make my full time job taking care of me! I worry about my husband having to be the sole provider.
I totally know what you mean about wanting to be a wife and a partner. My husband as said he wants to be a priority. I want him to be too, but I can't even make myself one! It is just a hot mess. Thankfully he is supportive and does his best.
I don't know how you do it with a family. Sounds like you have a great bunch and some amazing children. As tough as it is and it is so hard to go through, I bet this is going to make them even stronger and more compassionate for others. That is a positive!
Yes, we do need to do lunch! I wonder if they have a clear liquids only place to eat around here. :P
A cruise would be amazing. My grandparents want to take us on one but I just know I'll have an attack in the middle of the ocean. But, if they have pool boys and umbrella drinks....then sign me up!
Thank you for that response. Made me feel much less alone! Although, I don't want anyone to ever have to go through this!
OP, Emory University in Atlanta is doing a study on pancreatic transplants. Right now they are doing some studies relative to diabetes. But hopefully they will soon be able to help you.
One of my aussies had pancreatitis when she was a year old, and she was in serious pain. We had to monitor her diet until she stabilized. So I've seen a little of what pancreatitis is like.
I know alittlegray, one of our fellow cothers, has had pancreatitis and was hospitalized 13 times last year and already 3x this year.
Hopefully Emory will find a way to transplant a portion of a healthy pancreas into those like you who are suffering. Emory U. hospital is doing the islet transplants.
Your case, and that of Shannon's, alittlegray, are important. I don't understand why people on this board complain about little things when they have their health. You and others like you are the people who need support and care. And you have a right to complain about your situation.
And you situation is another reason why people should be organ donors. Hopefully in a few years, you and others can receive pancreatic transplants and lead healthy lives.
And as for jobs: What OP and alittlegray have gone through makes me glad I had a great boss in Atlanta. Lewis Slaton was the long time DA there. He kept one guy on the payroll for most of the 3 years that the guy was going through operations and chemo and radiation for a brain tumor. Loyalty has its rewards. I wish all bosses were like Mr. Slaton was to all of us.
Yes, I agree they need someone there too. Great suggestion about an attorney. The woman I spoke with about medical disability retirement was very kind and was the first one at work who seemed to care about me as a person. I did raise the issue with my doctor so I'll be interested to see what he has to say. He doesn't want me working at all, but I am attempting 2 days. (I was at 4).
Originally Posted by fooler
I hope you two feel better soon.
SFrost, I'm scheduled to see a Dr. Kashab (sp?) and I hope he will be kind. I saw a new PCM for the first time yesterday. To say he was an @$$ is the nicest thing I can think of. He put in the referrals I needed but when it comes to pain management, well, I hope Hopkins will manage my meds for me. I am so tired of being treated like a drug seeker because I have a chronic debilitating condition.
I had pancreatitis for over a year, and people who have not had it can not fathom the pain that results. I was on a liquid diet for over 6 mos along with enzyme replacers. I also gained weight and cried every time they weighed me. How could I be gaining weight when I could not even eat..Beyond depressing. Anyway...I was very strict with not eating as I was told. Not one piece of chewable food for 6 mos..that finally did the trick...I then had pureed foods of easily digestable food and took baby steps from there. To this day salads and really yummy whole grain stuff will occasionally give me problems. I have no real advice except to really follow what your doctor advises for diet, and keep demanding answers. I used to literally bang my head on the table and say if this does not stop I am going to kill myself, it was excruciating despite various types of pain meds. I went through several doctors before I found one that had gobs of experience and actually listened. A few treated me like I was some kind of drunk or drug addict. I had more tests than I can remember. They never did find the source, but I finally did get relief. I pray for the same for you.
Originally Posted by alittlegray
Ohhhh I am so glad you are seeing him! He was a fellow under Dr. Kalloo when I first went to Hopkins. I've seen him in clinic as well as him assisting on 2 ERCPs. Personally, I adored him. He was kind, compassionate and is really your corner to get you better. I can also say that anyone who works with/for Dr. Kalloo- they will have been demanded to give their absolute best and nothing less. He is and ERCP guy, which you would never want to allow under non-skilled hands, and he was trained by the best. I recall one ERCP I woke up in some horrific pain. My god- it was awful. He was right there by my bedside with the nurses helping. I hope that you find him as wonderful as I remember.
Dr. Kalloo does manage all my medications, including pain as of right now. I'm not sure if that changes now that I am being seen by Dr. Singh for additional evals. At any rate, something that has helped me "prove" my case of pain meds and I would suggest to anyone... Keep a journal of everything you do. I include everything from rating pain (both when it goes up and down), what I eat, when I go to the bathroom, activities, medications, each time I wake up in the middle of the night, and any other symptoms. Chances are at some point Hopkins will ask you to do this anyway. This way you can say, "Listen, my pain was a 7 at 2am and I was up for over an hour because if it" and so on.
I am not sure what the standard is with how pain meds are handled across the GI department but I have never, ever had an issue with this at Hopkins. (knock on wood)
The do absolutely recognize the need to control the pain and encourage patients to get it manageable. Even on discharge, I've been written scripts for Dilaudid, at a VERY high mg per dose, and told to call the discharging dr if I needed more. I've been told several times, "you have a chronic condition, TAKE YOUR PAIN MEDS" because for the longest time I was worried about the addiction stigma and I would wait too long.
Every doctor I've seen is personable. Some of the students are not, but they are eager to learn and please. Lots of people hate students/residents but I don't mind. I had a stent placed and was in the hospital for a week driving all of the dr's nuts I am sure. Such pain and anxiety. I kept asking them if I was going to die. Finally one of the doctors said, "NO, but the pain is going to make you wish you did." I just had to laugh. It was the most honest response ever. That same stay I was right under the helio pad and kept telling them I was worried about it crashing. think that is when they really thought I'd lost it and gave me some sleep meds. They all have great bedside manner.
I hope that info is helpful and makes you look forward to Hopkins even more!
Tradewind, 6 months of NO FOOD? Were you hospitalized most of that time? Was it a full liquid diet or just clears? And what about nutrition? Sorry for all the questions. That would for sure give the pancreas a great resting period, which is why I ask all that. I am so glad you aren't suffering any more!
Did I read right that they are researching pancreas transplants on diabetics? Just curious, my Dad has pancreatitis, but they have ruled out a transplant due to him being diabetic.
Originally Posted by cloudyandcallie
Good luck o both of you, it is truly a horrible condition
i'm so sorry you both have such painful conditions, it sounds just terrible.
massive healing jingles headed your way.
Yes. Emory is doing the islet transplants, but is researching doing pancreatic organ transplants. Right now everything is geared to diabetes patients.
My good friend Wendi (who helped me find Cloudy years ago) had (she is deceased) a son who developed diabetes when he was about 8 or 9 yrs old. Shortly before she was diagnosed with a cancerous brain tumor. Her son is now in his early 20s. I've kept up with the Emory research because I hope that her son can one day get a transplant. Juvenile diabetes is a very bad disease. And her son, one of 2 sons, is a great kid.
I have a friend whose son has had several kidney transplants. he works as a GBI agent and has a great life despite having rejected several kidneys. I hope that one day transplanting a pancreas is something that is common place and successful.
Those of us who have always been healthy need to realize just how lucky we are.
OP, you and alittlegray need to get together and help each other out. Sounds like you two could really have some beneficial conversations.
Such a crappy night here! I've been having an attach for a week or so and tonight I finally had to go in to the ER. Thankfully I had normal labs, but that means there is no end in sight for my pain and nausea.
They were great about giving meds and helping but I have to take so much Dilaudid that I get that awful narcotic itch all over. Even after a round of IV Benadryl I am so itchy. I can't take any more, and even if I could I can't say I would. I for sure got snowed from all these meds.
Just needed a mini vent. Yet another day I will have to call in sick. I've been thinking long and hard about what to do regarding work and I've decided that if my doctor will approve of medical retirement I am going t go for it. Money will be tight but I can't keep living like I am. I can't even call it living, it is more like existing.
I am going to be 28 in a few months and I think back on my 20s. I missed out on so much. being sick. I don't want to feel like this about the rest of my life. So, here's to hoping my doctor agrees and we can get it approved.
I'm going to go sleep off all these drugs now! Or try to anyway, if this itch ever stops!
Oh, I am so sorry to hear you were back in ER land tonight! I am so glad they treated your pain regardless of your lab values. It isn't much but it is better than nothing. I hope you can fall asleep soon and feel better in the morning!!
I just wanted to thank everyone for all the encouragement. After taking some time to think it over I've decided that not working is going to be the best thing for my health. So, I get to start the long process and keep my fingers crossed that they agree that this disease is preventing me from working.
Again, thanks everyone!