I write as "The Dysfunction of Motherhood" because I wanted somewhere to post all the quirky moments of my time as a mother. Just a place to share and file away memories of my two daughters as I walk them through life. Like the other day, my husband was so frustrated with hearing "Daddy, daddy, daddy, DADDY" that he told the girls he changed his name. He was no longer daddy, his new name was "MASTER." Now the next day you'd think the girls would've forgotten of this dramatic name change but at dinner, my youngest, "The bee," looked at her daddy and say "More food, Master" like that would be more accepted than please. This is the youngest who also asked for coffee. "Not to drink. To DIP my cookie." That was her her reasoning on this.
Those things happened while I was upstairs listening in on what used to be my life. My girls still laugh and still sound like the happiest children in the world. Only the mother in their life happens to be MY mother. Teaching them about coffee. You know, she did that to me as well. I can't eat THAT particular cookie without dipping it in coffee. My youngest is me. My oldest has my attitude, but my youngest looks like me, and acts like me. So, go figure. I am thinking about changing this to the dysfunction of my pancreas. Why? Because when having a heart to heart with a doctor that actually cares about me long enough to tell me I am going to be in his life for years to come, he told me about the long term. The long term is that I am looking at at least some type of chronic pain for life and I may need narcotics for life. He doesn't think it will be as bad as it is now but I have a pseudocyst around my pancreas which is causing a lot of pain. He's hoping to get my body back in some kind of shape. Right now, I am malnourished. I haven't eaten in months. I am relying on IV food which is no longer working.
In my attempt to find other people like me... That's how we justify things. We find people. I am looking for the people on the chronic meds. The people who's pancreas is so messed up they have a hard time functioning. But I didn't find those people. I didn't find anyone but spouses. It can't be that these people just aren't out there. Hopefully, they just don't write. I can't imagine my life on pain meds ALL the time, even though that has been my life since December.
Did I tell you about December? Well, I can't. All I know is that I went to the ER because I knew pancreatitis had knocked on my door again on December 28th. They gave me pain meds and as I fell asleep, that day, I sent my husband a text message: "worst attack ever." I didn't know it at the time, but it was the attack of all attacks. It drove my triglycerides to 8,700. A number that should read 150. My pancreas enzymes were 3,003. A number that should read under 100. When I woke up, the board.... the board read January 21st. New Years was gone. My daughters birthday was gone. I was alone in a weird room. Turned out, I was in secondary ICU. I had tubes down my nose. I had wires and I didn't know where things began or ended. I left the hospital finally on February 11th. Only to end up back in 2 more times in February. My GI wanted me to see a specialist in Florida but I knew that wouldn't be possible. He referred me to someone here. The doctor that I see now that actually cares about me.
I cannot describe to you the pain I am in. Right now, I have what is called a G feeding tube. They wanted me to have a G tube, and a J tube. The G tube would drain fluid from my stomach. When did fluid start backing up in my stomach? Sometime in December apparently. The J tube was no successful in being put in and that is the tube that would turn this around. That was the tube that would stop my hair from falling out and my nails breaking painfully at the slightest touch. When this all started, I am sure before January of 2010 now, but that's when everything officially went to hell and started to be constant and ongoing. I didn't know your pancreas could have an "itis." And I didn't know the "itis" could be this painful. You think of tonsilitis, sinusitis, etc. As my daughter would say, "that stuff is easy peasy" to get over. Then again, no one really thinks what they have is fatal yet here I am. From January to February last year, I gained closed to 50lbs in distension alone. Now, I am down that 50 and then some in malnutrition.
There is one thing I have learned, you have to see a doctor you trust. A doctor that will stop at no end to help you. I have one now, but it may be too late. This could've started as early as 2004. Definitely as early as 2008. I no longer feel like I mother. I listen to my children from my bed upstairs. I have been out of the hospital for a week which the "doctor that cares about me" didn't want me to leave. His partner let me leave. Sometimes I swear I should've listened. My children think I am home to finish getting better. Little do they know I am getting worse. I can't eat. Can't drink. I've been vomiting and spending a lot of time in the bathroom. Not to mention draining fluids from the G tube. I am withering away again. I am seeing "the doctor that cares about me" on Monday again and my husband has a feeling that he'll be embarrassed to let me leave again. We're having my daughters birthday party on Sunday so I can be there and not feel guilty about being in the hospital.
Sad isn't it? Dear pancreas, I am sorry I took my old life, for granted. It was perfect. I want it back. I want to be a part of my family again. I miss my work family. My blog family. I miss not crying all the time. My husband misses me not crying all the time. I miss my life before I knew what TPN was. I miss my life before I knew what pancreatitis was/is. Apparently, life is taking me down a rough road so my blog will probably reveal this since I can't sleep anymore. I total maybe 3 hours of pass out time, twice a day. Then I am awake in pain all night. That's why I can write so much right now. I should be asleep. But here I am. One thing you should know about a feeding tube is they hurt, badly. It feels like I have a knife all the time in between my rib cage. Throw in the pain from the pseudocyst, and it hurts to expand my lungs, to simply just breath. Now we have fluid in stomach causing extreme nausea. A G tube that should be draining into a bag but the bag the hospital gave me didn't work. It kept falling off and my husband was constantly cleaning up junk from my stomach off the floor so I left the bag off and drain it periodically, which isn't enough. Then we also have the feeling of all of my insides wanting to be on my outside. I can't describe the pain scale here.
I have had my gall bladder out and a stent put in my pancreas, some thing sent my body over the edge in December. What? We may never know, but I hope in time the same thing this new doctor hopes for me. That he can operate on my pancreas soon, right now, if he puts me on his table, I won't live through the operation. He already knows it. Which is why they tried to get a doctor to endoscopically put the G tube and the J tube. But that doctor failed. There is nothing we can do about it but keep trying the J tube. Eventually, I will ask him to get over himself and put the tube in for me.
I can't take slowly dying upstairs while my life continues without me downstairs. All the jokes, all the laughs that were my life. I am glad my mom is here. She's doing a wonderful job, but I alone AM their mother. I am supposed to walk with them, to bless them, to teach them, to carry them, to wipe their tears, to love them unconditionally. They are MINE. They know it. Every night, my soon-to-be 6 year old, the bug, wishes that every new day I feel just a little bit better so I can be her mom all the time again. She told me this. Words of wisdom. I want nothing more, I tell her as I kiss my princess goodnight. I don't have the heart to tell her that I may go back in the hospital again in a mere matter of days. That's why her birthday party is a week early. When she found out we were bumping her birthday party, she immediately came up and told me we had to pretend she was six a week early. I had no clue what she was talking about. I've had to face some tough realizations this year. We had my youngest birthday party more than a month late. As I was in the hospital for even my birthday. I tried to do her cake and failed miserably. My husband and mom finished my concept and will be doing the cake this time. It's hard to swallow. I always do their cakes. But I will be there with her on her party day and that is all I can ask for at this time.
These things make you realize how truly amazing some people are. Red for example, I am sure he never pictured that he would have to watch me constantly come close to death. I am sure he never pictured only seeing his wife for an hour a week in the hospital, just as I never pictured only seeing my family an hour a week while in the hospital. I am sure he never planned on living with my mother. I am sure my mother never planned on living here. But here they are. For me. I am lucky. My husband and I just don't do well apart. We've been apart so much, he plans on packing my bag everytime we see my doctor. Just so there aren't anymore surprises. See, I wouldn't think about that. The hospital I go to now is 30 miles away. It's smart. Last time, I didn't even have my cell phone when we went. I didn't plan on having a doctor that cared I guess.
I've been writing for over an hour and I can't take the pain anymore. There is a lot I think about when I go into the hospital. My dad died of dehydration while in a hospital. I know this won't happen to me, but on the other hand, I know it's possible. I also ran into a lot of nurses who are overworked. Given impossible situations to deal with in the hospital. It was funny and hard at the same time to watch them work. I knew my care quality was less because of it, but after 20 days you get used to some things. While I was there, right next to my room was a hall way called the "pod" and this hall was for the confused patients. These patients constantly tried to escape and frequently took up much of the nursing staff. A lot of other patients complained about it constantly. I understand why. Still. I would laugh every time Edna, a 90 year old confused person, actually being held there against her will while a custody battle for her goes on. I wonder if she made it out of there this week. She tried to escape every day. Ha. Okay. I think I am going to be done for tonight. This was sort of a practice run to see if I could even think of anything to write about. It looks like my brain still functions fine.....at least for the time being. ;)