Raw update

Two months ago my pancreatitis started to flare again. I spent a week and a half in the hospital for pain meds and have been reliant on my feeding tube because eating makes the pain worse and often leads to vomiting. The pain of pancreatitis is like a porcupine under each side of your ribs with sharp quills that poke constantly and then randomly they'll stretch out and shoot those quills and at other times these massive flaming swords will just randomly stab through me. If you can imagine what that would be like it's the closest thing I've come up with for understanding what pancreatitis is like. Even with strong pain meds it can be almost impossible to sleep and even when I do my feeding tube pump which is a diva loves to wake me up with it's loud alarm or some nights I wake up covered in formula because my feeding tube came disconnected which sucks because while in excruciating pain and exhausted in the middle of the night changing sheets becomes a very angry process. Once awake the pain makes it so hard to fall back to sleep. 

Living with constant severe pain is hard. It's interesting how it starts to be normal like it sucks, but it's like life has to go on. I can't spend every minute lying in my bed. When pancreatitis first starts everyone can see the pain because it's new, but as it progresses I start covering it up better. It's still there constantly but it kind of becomes normal except at night time. It's always excruciating at night. 

One of the treatment options that we have been trying to get insurance to cover for forever is a celiac plexus block. It's a surgery where they go in and kill the nerves that go to the pancreas, stomach, spleen, liver and gallbladder in the hopes that it will get rid of the pain. It has about a 50% success rate, but with how much I hate being on pain meds and my desperate desire to be able to eat mashed potatoes at Thanksgiving I am very ready to give it a try. It's something that if it's effective would be repeated every 3-6 months to try to manage the pain. It was scheduled for this last Monday, but a couple days before the surgery I got a letter from my insurance saying they needed more info. Calling the surgeons office I found out that he hadn't sent one of the papers he was supposed to. Insurance said they would review the pre authorization again on November 15th. I don't know if any of those people understand how their decisions impact my life. I would bet the surgeon has a lot going on and probably the paperwork not getting completed was not intentional. Insurance I have a lot harder time giving the benefit of the doubt too. Sometimes it feels like their job is to add misery to already miserable people. They love to slow the process of getting the medical help I need. It feels like they use delay tactics a lot and I'm the one left trying to live life that is greatly limited by pancreatitis. I wonder if they realize that by delaying the procedure I have potentially another month of insane pain, nausea and missing out on food. I wonder if they know how many holidays I have missed eating at in the past. I wonder if they know that I feel like I'm not me when I'm on these meds and that not sleeping or eating and the constant pain is horrible on my mental health. I wonder if they thought about how much I want to be able to work and meet with clients and the drop in caseload I've had to have and the impact me being sick and being out frequently for appointments and sick days is having in the lives of my clients. I wonder if they know the impact it is having on my family? I wonder if they know that pancreatitis continually causes me to go from living on my own to being back home with my parents because I can't drive on the meds I'm on and am barely functional. I know they don't know to the surgeon I am a case file that he probably skims over before the surgery. To insurance I'm an expensive case and they don't want to have to pay. I feel insignificant when I think of how they might be viewing me. 

Sometimes when I'm sick I fall into the belief of feeling like I don't matter. Frequently it feels like I'm just the next person they are doing the procedure on. When I'm sick I feel very isolated from everyone. It's hard to connect with others and I kind of feel like a burden because it has to be accommodating for me and I don't feel like I'm my usual self. It feels like I'm this partial version of me. I miss people though and I really could use some care from people who know me who see me beyond the medical version of me. I also could use some distraction. So what I'm saying is if you are wondering how to help please reach out tell me your life updates, remind me of who I am outside of being sick, send me jokes, ask to visit, and reconnect with me even if it's been a while. Please enjoy your food if you are able to eat. Have a meal that you can really experience the pleasure of eating and appreciate your body for letting you eat it.