April 27, 2009; 4:30 a.m.

I can't help but notice a trend here. Once again it is 4:00ish in the morning and I have yet again been unable to go to sleep. The main problem is the overwhelming nausea, but, of course, there is also pain. It is not severe this time, but it is bad enough that I can't sleep. This happens several times a week. I just don't post every time it happens. I seriously need to get a new doctor, but I have issues with male doctors. I realize that these issues are not their problem, but mine. However, that still does not help my situation. I am getting low on my pancreatic enzymes and do not have any refills on them. I will run out of blood pressure medicine in about six months. I still have some pain medication, but it is running out as well. I try not to use it very often, but sometimes that's all that works. Well, the birds are singing outside and the eastern sky is lightening slightly. I guess I will go lay down for another hour or two before I have to get up for the day. Maybe I will be able to fall asleep in time to wake up.

April 20, 2009; 4:15 a.m.

So, here it is a couple of hours before I need to get up for the day and here I am awake (still). As usual, I am not able to go to sleep in spite of being tired due to nausea and moderate pain. I am primarily referring to pancreatic pain, but I am also referring to joint/muscle pain as well. My hips, back, shoulders, neck, and other joints have been aching on and off for several months now. I don't know if it is arthritis or just aging, but I don't think I should feel so sore. I still don't have a doctor so I guess it doesn't really matter anyway. I just would like to be able to go to bed, fall asleep at a normal time, stay asleep, and not awaken hurting. That seems to be a lot to ask. I guess I should try to update my other blog sometime. I may as well do it now since I am obviously not going to go to sleep until the end of today (which hasn't even started for most people). I am hoping that I will be able to sleep after not sleeping tonight...or is it last night now?

Blech....4/10/09

I am sick of being sick. I'm going back to bed. Enough said.

No news isn't always good news-3/24/09

Can I just say that pancreatitis stinks?  I haven't written on this blog for a couple of months.  I think that I have mentioned that my doctor is no longer practicing in my town.  I have yet to get a new doctor.  I actually did make an appointment with one.  I had to take a half day off work to go to it, too.  When I got there, I was told that they could not see me because they didn't take my secondary insurance and I was told to leave.  They did take my primary insurance, but apparently, that isn't good enough.  What a waste of time!  AND...I am still stuck with no doctor.

I have had a couple of bad attacks in which I went to the hospital.  There really wasn't much point in that because my lipase and amylase levels weren't very high after a sample was sent to the lab and I was sent home after that.  I was still sick and in pain, but with no PCP to vouch for my non-craziness, I was not believed to have pancreatitis.  Don't these people realize that often after a person has had repeated bouts of pancreatitis for years that the lipase and amylase levels do not always rise significantly anymore?  The pancreas just doesn't work as efficiently as it once did in the past.

That leads me to here.  I am awake and hurting, but do not see much point in going to get help.  I have taken about the maximum amount of painkillers I can safely take and it has dulled the pain somewhat.  That will have to do for now.  The question is:  What happens once I run completely out of painkillers and I have no doctor?  I also wonder if these pill-form painkillers are worse on my kidneys than the ones administered via IV.  I do not need to have issues with other organs.  I am frustrated enough with my pancreas.

I know what doctor I want to see.  I have seen her in the past a couple of times and she is wonderful, but she is not taking new patients unless they are pediatric patients.  I do know that she takes both my primary and secondary insurance as well.  Unfortunately I am not able to get past the office staff to talk to her.  They just tell me that she is not accepting new patients and will not even listen to anything after that.  I am frustrated and do not know what to do.

January 11th-3:00 a.m.....pancreas and random thoughts about death

I can't sleep. My stomach hurts. I guess it's actually my pancreas, but I get tired of it always being my pancreas. The good news is that the pain is not debilitating. It's just bad enough to wake me from sleep and prevent me from going back to sleep. I am nauseated, but I have not vomited so that is a good thing. Church is in five hours and I need to go. One good thing that has come from this experience is the knowledge (as opposed to just belief) that God does exist. I won't go into details here on the internet, but I had a very convincing experience of this the first time I was admitted to the ICU for the three weeks and almost died. I knew that everything would be okay. I want to clarify that I did not know at the time that I wasn't going to die or anything, but it was made quite clear to me that regardless of the outcome of that situation it would really be okay. So, here I am almost five years later. (I was first admitted on 2/29/04). There have been times, when I've become discouraged, since then when I've wanted to give up. Maybe the knowledge that there is something amazingly better has had some appeal. I don't want to die right now and I really don't think that is anything I need to be concerned with at this point, but when it does eventually happen it will be fine. I just hope that it will be sometime after all of my kids are grown. I would prefer to live to a ripe old age if possible, but I am thankful for whatever I get. I am also thankful for what I have gained through this pancreatitis junk. Many people believe in God and rely on their faith to get them through hard times. I don't know that I would call what I have "faith". Is it faith when you know something without any questions or speculation? I have also learned a lot of patience and I have learned more about humility. I have learned that life is not always what we expect and that our time here is short. Because of that, I have become a better person. We can't take anything with us when we leave this life, but we can leave something behind. We can leave behind kindness and love for others. That is why I need to be at church in a few hours. It helps me remember these things. A hospital is a place we can go to heal our bodies. Church is much the same way. It is not a museum for saints, but a hospital for sinners. I guess that's all for now. I think I am going to take a little pain medication and see if it helps.

I still think the surgery worked....

...even though I have been in pain and sick for several days. I suppose this is to be expected. For the most part, I do feel better. As I mentioned before, I do not have constant nausea and my pain is intermittent. I did go to the hospital last Friday night/Saturday morning because the pain and vomiting were getting out of hand. Of course, I do not have a doctor now for the ER people to question about me. To them, I am just another random patient. They got an IV in after a few tries (I guess being so dehydrated didn't help much). They gave me something good that made me stop vomiting and something for the pain. So after a couple of hours in the ER, I went home. I have been up since about 4:00 a.m. with moderate pain and still have nausea, but I am slowly feeling better. It is now Tuesday, January 6th so I have had a few days of mostly rest to get to feeling better. We had a late start at school yesterday, so that helped. I am still exhausted, but need to start getting ready for school/work. This is going to be a long day.

December 2008

I think that the surgery worked! I have not been in the hospital since October 14th! I do have intermittant pain in the pancreas area, but nothing very severe. I have had some moderate pain that pain medication was able to control. The nausea that was constant for over 4 1/2 years is SOOO much improved. I have bouts of it during the day (and night, for that matter), but it is not persistant.

This blog may become something entirely different. Maybe it will just turn into my negative/complaint blog. That way I can post things here that may upset/worry family members if it were posted on the other blog. Who knows? It is nice to be feeling so much better physically. I am hoping that 2009 is wonderful. Happy New Year, everyone!

The Sad News

Friday evening I got a letter from my doctor's office. In a nutshell, my doctor (V) is quitting her practice and moving away. When I read the letter, I was devastated and just started crying. I can't believe she is leaving! I try not to think about it because it makes me feel so sad. Not only will I miss her, but I will miss her nurse (K) as well. I really have grown to love these two women over the years. They are my friends.

I also am not thrilled about the prospect of finding a new doctor. I tend to have trust issues and don't always divulge a lot of information at first. The whole well woman exam will not be happening for years and years now. I don't think I will talk about the knee pain that is getting worse with a new person just yet and I don't know that I will talk about the headaches & dizziness I have when I wake up all the time either. The main thing I don't want to talk to someone else about is my pancreas. I don't want to have to try to prove to someone else that I am not some closet alcoholic. That tends to be the popular belief when I see a new physician. I am hoping that my pancreatic problems are gone. I have had some minor problems with it since my surgery, but it seems to be much better. Maybe I won't even need a doctor any more.

This whole situation stinks. I hope that I will run into (K) sometimes and that I will still get to visit with her on occasion. At least she will still be in town and I'm sure that as amazing as she is, she will find a new job soon. I am not as hopeful for seeing (V) ever again. She will not be here and, honestly, I don't know where she is planning on going. It may even be to a different state for all I know. To think of never seeing either of them again makes me sad and I try not to think about it because I cry like a little baby. I really hope that they will keep in touch somehow and that I won't entirely lose contact with them. I guess that's all for now. I need to get in bed before midnight and hope that I will actually be able to sleep through the night for a change.

More about the last bad attack (written 10/26)

After the attack described below, I went in to have my blood drawn the day after I posted. My lipase and amylase levels were perfectly fine. I can't explain why, because that was one of my more painful attacks. I continued to go to work for the rest of the week and slept on the floor during lunch all week. I must have looked awful because everyone commented on how terrible I looked; even the men. They usually don't notice such things. My friend told me the following week that I looked like I was going to drop over dead at any moment. The pain was pretty much under control by Wednesday evening, but I was still very nauseated and did not eat much until the weekend. I had a little yogurt and sips of water. I sucked on hard candy in between. Most of the time I was very nauseated, dizzy, and shaky. Then there was their weird, black poop. That went on for a while after I felt better. It finally stopped a couple of days ago. I am better now. I still have dizzy spells and have to sit down for a little bit; even today I did.

Now, I don't want to sound like everything is all gloom and doom. I have had some periods of time since my little surgery in which I have not felt nauseated. That has been amazing! I am hoping that things will continue to get better. Maybe I just did too much too soon. Perhaps I needed to wait a while for any internal swelling that may have occurred to subside. I am hoping that this may be one of my last entries in the pancreatitis blog. I really need to write some in my other blog so people do not think I have vanished from the face of the earth. Let's hope that I am finally "cured".

Tuesday, October 14, 2008

So, I had my ERCP/surgery on Friday at the Mayo Hospital and they let me go home on Saturday (my birthday). It seemed like a miracle cure! For the first time in 4 1/2 years, I was not nauseated! I even ate some cheesecake for my birthday that day and had no ill effects. I was thrilled! I was finally cured!

You'll notice the term "was". On Monday, I slept in and then took my son to pick out his birthday present. (It was a bike.) In the early afternoon, I took three kids to get fillings and two to get their braces tightened. I was extremely tired; weary in my bones. I went home and slept soundly for three hours. I picked up some pizza for the kids, but didn't feel like eating anything myself. I still felt very exhausted and achy. I took a hot bath and just soaked. Almost immediately after getting out, I was seized by gut-wrenching pains that were so severe I literally fell to the floor. They were so severe, that I could not remember them being so bad before. My daughter called the ambulance and I was vaguely aware that some of my other children were awake and witnessed this attack. I guess my one son started to hyperventilate and my daughter had to treat him for shock. (They told me this later.) As soon as I got on the ambulance, they drew blood and this was the blood sent to the lab. Needless to say, my levels were fine at the time. They had not had the usual wait time it takes for them to skyrocket. After a CT scan and being there all night, I was sent home a little after 7:00 a.m. I went to work. That was one of the stupidest things I have ever done. I had to take percocet several times just to make it through the day. I dropped on my classroom floor (which is very cold, I discovered) and slept through lunch. Even with the percocet, I was still hurting. The nausea came back with a vengence as well. I came home early and crashed for a couple of hours. My son woke me up because it's his birthday and I took them to Taco Bell. I ate a tortilla with cheese. That was all I could handle. Then the pain got worse. We came home and I took yet MORE percocet and we (well the kids) had cake and he opened his presents. Then I soaked in a hot tub with my friend/enemy percocet kicking in to dull the pain. Now I'm here. The pain is still pretty bad, even with the percocet. I am going to bed with a heating pad and try to make it through another long, painful night. I don't know how much more of this I can take before I do something bad.