Escalator

 It has felt like I'm trying to climb an escalator that's going the other way. Like I'm working so hard and not making progress. Sometimes I make a step forward before it takes me down, but inevitably the escalator speeds up and I'm back in the same place. It doesn't feel like progress because I'm in around the same place all the time even with all this effort. Like to maintain stable takes all my effort more effort than I think others realize because I'm in the same place on the escalator. 

Medically it is a lot. Right now I'm supposed to be connected to my feeding tube 24/7, taking 4 pills in the morning, 14 pills at night and my pain and nausea meds frequently throughout the day, plus ideally enzymes with my feeds. For my airways I should be doing my sinus medicine once a day, breathing treatment meaning 2 meds that take around 15 minutes to nebulize each and an antibiotic that takes around another 10 to do and I should be doing airway clearance through my vest, exercise, or Acapella ideally I'd be changing it up with each of the 3 breathing treatments I should be doing daily with my antibiotic. I have a whole container of nebulizer cups I should be cleaning and sterilizing. I should be doing my physical therapy exercises every day for half an hour. I should be calling and figuring out bills with insurance and the hospital and doctor offices. I should be seeing my psychologist with pain management once a week, my physical therapist with pain management every other week, I have my therapist each week, ordering a med or multiple meds each week (because they are all off schedule so there's always a medication due for refills), I have my CF team, GI doctor, pain management doctor, primary care doctor and because insurance changes I need to find a new urologist, ENT and dermatologist. Each of these clinicians change the to-do list when I see them. They have more to add and change up sometimes in line with what I need help with and sometimes added burden somewhere that feels irrelevant. Honestly, recently I have not been keeping up with it. It's kind of a combination of burning out, still feeling pretty dang sick and prioritizing what feels the most important for me. Staying nourished and managing pain and nausea are the top priorities. It is what gives me any shot of doing the rest. There's a lot that is falling by the wayside and that is okay. Even when I do all these shoulds perfectly I never make it to the top of the escalator. It just keeps going with the shoulds ever changing and my health hanging in the balance. It's exhausting and so much effort to show up in my life with the things that matter to me. There's so much behind the scenes that is going on for me to be present. I desperately need those moments of normalcy. Meeting with clients even with my very reduced schedule helps me feel more like myself and gives me some time during the day that I am focusing on something besides caring for my body. Hanging out and talking with family and friends helps me remember who I am underneath the patient role I'm constantly in. Those moments of normalcy are why I keep climbing the escalator. I know CF is progressive and so are some of my other conditions which means the escalator is going to continue to speed up over time. The effort needed to stay on the same stair is going to continue to increase and I will be going down the escalator with time. It won't be all at once and I know the escalator speed will change and with the changes my priorities get to shift. Hopefully at some point my pancreas calms down and I can say goodbye to carrying feeds and my pump with me constantly and get off the strong pain meds I'm on and be able to drive. It will likely be temporary because my pancreas is an angry little organ, but for a little bit I'll get some time to regroup and maybe even catch up on those things that don't feel like top priority with my health. 

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.