Kind of an update kind of a rant

I've had a lot of appointments and even the surgery I pushed so hard for since I last updated on my health. In a lot of ways nothing has changed and in other ways they have. I'm now going on almost 7 months of being 100% reliant on my feeding tube for nutrition. It's crazy to think that in the past year I have spent more time eating through my tube than through my mouth. There are things I could update on new theoretical diagnoses, a surgery that was so much more painful than I was told it would be that if anything made things worse, feeling misunderstood and having trust betrayed by clinicians that should have known better, and an emergent feeding tube change after days of stomach acid pouring out of my broken feeding tube and down my stomach which is very painful and yucky. I don't really want to relive those things or share about them. 

Some positives are that I have been able to eat foods that drain through my gastro/stomach tube which is mostly foods that start or turn into liquid that I then drain out of my stomach into a drainage bag which is a fancier way of saying my vomit comes out of the tube instead of my mouth. It has been a good change. I like to be able to eat even a little bit and my doctor called it comfort eating. I don't feel comfortable doing it in public or with very many people because the vomit bag has to be on the ground because of long tubing that works with gravity and that feels a little gross even to me. On my birthday I was able to have an ice cream cake which was a really nice change and I've even done some chocolate that I'll drink hot water with to help it dissolve and come back out. My formula goes into my jejunal/intestines tube which is under my stomach and so even while draining I still get that valuable nutrition. I have a really amazing pain clinic and doctor who is so supportive and understanding of me and my goals. Even with that I'm on some pretty strong meds that I know mess with me and I still struggle to feel fully like myself. Since those dreadful tweenage years I don't remember being this irritable and I try really hard to use my therapy emotion regulation skills with it, and still it feels very abnormal for me. I have twin newborn nephews who live just a few minutes from me and I see them and their twin toddler siblings very regularly and their whole family is a very bright spot of happiness for me. I love being an aunt to each one of my nieces and nephews! I had a couple month mostly hiatus from medical appointments or at least a significant reduction between December and March. I've managed to stack my 3 month gap between appointments with multiple providers to be in the same months so going into March I have another very medical intensive month. It was nice getting a break and just letting things be where they were for a while. 

If I'm being honest as I head into the month of appointments I'm not too optimistic anything will change by the end of it all. I worry a little bit that where I'm at is as good as it's going to get until my body decides it's ready to heal. I'd love to be proven wrong, but that's the way it feels. My GI doctor does believe that gastroparesis and intestinal dysmotility are both playing a very large role in my symptoms too and is working with insurance to get a med covered, but I've heard from many individuals it took over a year to get insurance to either cover or not cover and I don't anticipate any changes with that for a while. He was able to show me my pancreas and the damage to it on imaging… if I'm being honest I couldn't read it even with him pointing to things, but I'm pretty sure he knows what he's talking about ;) 

Relationships with medical professionals are interesting things and strange to develop. Some of them I will see very regularly likely through the rest of my life and some are just this momentary part of my journey, but I feel like whether good or bad they shape my medical journey and my view of things. The ones that minimize concerns and don't take the time to really understand leave me scared to go back to any medical settings. The ones who take the time to know me and my goals and concerns and really work to address them have me feeling cared for and ready to face what is to come. CF is an interesting illness. In reality medicine is very likely to fail me at some point down the line like even if I had the very best care and all that medicine could provide without having to wait on insurance or wait for appointments and I was 100% compliant with my treatments. In the end my disease does not have a cure and is terminal. It's not a reality I like to dwell on, but one at times I think is important to remember. If this is all going to fail then I should be extra informed and decide what I am and am not willing to do when it comes to my care. I obviously want to fight and work through things and I meet with doctors as consultants on my care not as the people who decide my care. I want to be the one making the choices with the help of my doctors educating me and helping me understand and make informed decisions. One of my friends with CF described it as being the boss of a company and hiring employees who work for you. Obviously they are experts in their areas and very important to consult and still at the end of the day I am the boss and it's my body. Sometimes this view gets me into power struggles with clinicians which is uncomfortable, but honestly I'm learning it's not a bad thing. I have found that it's better to be difficult and have the care I need than to be submissive and have to live with the physical and emotional side effects. Obviously this is all a learning process and I can say that while still having struggles advocating for myself at times. 

I'm trying my best to navigate what my life currently looks like and move towards the things that matter to me despite the ongoing health challenges. My medical care takes a lot of time and even with being on tube feeds 24 hours a day I'm still not meeting the nutritional goals I should be and there's still all the lung and medications stuff too. I've gotten better at not resenting that time and allowing it to be a relaxing and reset time when I'm doing medical stuff. I'll put a show on while I set up feeds or organize my meds or supplies. I'll look at social media during my breathing treatments and exercise and I will try to keep living the best I can while tube feeds run. I'm still working as a therapist and it is great! I have a schedule that works for me and is way lighter than it ever has been which feels needed and like a good balance. I'm not sure with very many other career fields I would be able to work while I am as sick as I am. There's definitely things I would like to have improved in my life, but also so much joy in the midst of it all. 

A moment of joy in the midst of pain 💕

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. 

Connection

 Sometimes it's hard not to compare myself to my friends who are my age. People from my years in school who are now working full time and getting to have these incredible impacts on the world. People who are buying houses and at least seem to have attained some sense of financial security and stability. Friends who have or are expecting to have cute little babies. Friends who are traveling and seeing the world. I am very proud of each of them and honestly happy for their accomplishments. I sometimes feel extremely alone in where I am in life. 

It's not where I expected to be at this age. My teenage self is wondering where that rich Australian is. My newly accepted to grad school self is wondering when my health will allow me to really dig into the work and explore my passions. The me who graduated is wondering at what point I get to be independent and feel secure. My current day self looks at my health and all the changes and wonders what the future holds. I am really hoping it gets better, but the reality is in my doctor's words I have a "progressive fatal chronic illness." 

Does comparing seem to be helpful or like it leads me to a good place? Probably not. I'm sure those same friends look around and feel the same sense of loneliness when they compare to others. For me comparison is one of my protective mechanisms. If I believe others can't or don't understand then I don't have to be vulnerable and tell them where I am at. I can be in my own "safe" isolated bubble. The thing about connection is it requires at least part of my genuine self. The optimist (the part of me that portrays this never ending supply of happiness and positivity) can't be the only part of me I let be seen if I really want the true connection. I can reassure you that part of me is still here, but there are also so many other parts too. 

The morning of my birthday was really rough for me this year. It's the second year in a row that I haven't been able to eat on my birthday.  Not only that it's the second year in a row I couldn't eat on Halloween, Thanksgiving, Christmas, New Years and my birthday. My blood work has repeatedly shown severe malnutrition and while the feeding tube is helping it will take me months to get my body back to a normal level in most of those areas. My birthday also represented getting older and still not feeling like I've achieved everything I should have by this age. This fall my plan was to be roommates with my sister in the same apartment building as one of my best friends. My sister would be doing law school for the next 3 years and I would be able to focus on work and paying off my student loans. I was going to finally have the stability I had been craving. My little sister found out the week before her classes were supposed to start that she was being deployed for a year. My best friend who lived in the same apartment building moved to a different state recently. I tried to still cling on to that apartment, but after passing out while alone there my doctor told me it was not safe for me and I made the difficult decision to move back home. There's been multiple times over the past few months where home health has come daily to care for me. I have lost some of that highly valued independence. I haven't slept through the night since October 9th. Many nights I wake up with intense pain, nausea or because my feeding tube is beeping for attention and it can feel impossible to get the pain to calm down enough to even try to fall back asleep. That is all to say that on the morning of my birthday there were so many vulnerability factors that were struggling. 

There were many people who reached out to me that day. I ignored almost all of them until I was in a better place mentally. I feel like I have to portray the optimist. I am afraid if I replied to the question of how I am doing with some of these other parts it would be more than people wanted and that I myself would have to face emotions I've been running from. I have spent years and so much money on therapy. One of the biggest and hardest things for me to learn is that my wants and needs matter. I struggle to allow that to be true and to ask for them. I worry about how it will impact others. I was at a training this past weekend though and one of the screens he showed felt like it was meant for me. It was about helping clients and their families ask for help from those they know. I'll share a picture of it below. It talks about how asking for help drives connection and frequently helps others to feel valued and cared for too. I am going to continue the work of honoring and asking for my wants and needs. Part of that means some of these blogs are going to be more raw and may not be as optimistic as I typically am. My hope is that it drives connection and helps me combat some of the isolation caused by comparison. 

Introducing GeorJay Tubie

 It’s currently Wednesday and I got the G/J tube (which I am fondly calling Georjay Tubie) last Friday. People who have had them told me that the pain is worse than you can imagine or expect after getting the tube placed. I thought hearing this would prepare me, but I can honestly like them say it is worse than I anticipated. Movement was killer. Like straight up to a 10 on the pain scale and not moving is still a pretty strong 7 on the pain scale. I pride myself on independence, but I didn’t dress, move, or go to the bathroom alone for the first 3 days. Even with help the pain and effort was horrendous. 

I must have some really good abs because cutting a hole through them is so noticeable. Who knew that most basic movements are actually an ab workout too? 

Home health came the first 5 days to manage the tube, do labs, and help me. It was nice to be able to learn from others and also not have to take it all on myself. I also had a fabulous dietitian from my CF team who checked in with me daily and dealt with all the hoops to ensure I was being properly cared for. It was a little daunting when the decision was made that I could handle it on my own now. My labs came back good and the home health team expressed full confidence in my ability to manage it on my own. It also feels like progress. 

I am very lucky to have people around who support and care for me. I’m lucky that a procedure like this is possible. I am more optimistic now that the pain has eased a little that Georjay will be very helpful for me going forward. I have felt the difference already as my body is receiving the nutrition it’s desperately needed. I hope to enter a season of stability with my health and managing CF armed with my new friend. 

G/J tube

 In October 2020, I was first introduced to Pancreatitis. It was an unwelcome extremely painful friend. I spent a total of 4 weeks in the hospital between 2 different hospitals and treatment teams. One of the interventions introduced was a NasoJejunal (NJ) tube. This is a tube that is inserted through your nose and navigated down into the intestines. The first time I had it placed they came to my room and I had no idea what to expect. It ended up being a very painful and unpleasant experience and the pain lasted for around a week after the placement. Since that time I have had 5 different NJ tubes placed through the same procedure and spent around 5 months receiving my primary nutrition through these feeds.

Cystic Fibrosis results in thick sticky mucus and in my pancreas this mucus stops the enzymes that digest food from being able to fully leave which results in them digesting the pancreas itself. This leads to excruciating pain and inflammation known as pancreatitis. Blood tests can show elevated levels of these enzymes in blood and imaging studies often show atrophy or pancreas deterioration which is often how pancreatitis is diagnosed. In January of 2021 I had an ERCP procedure done which is basically a procedure in which the doctor goes in and endoscopically cleans out the ducts in the pancreas. This helped and after a few weeks I was back to eating a fairly normal diet. Over the summer of 2021 I had a mild bout of pancreatitis that went away with a clear liquid diet. On October 10th of 2021, I woke up in excruciating familiar pain. The pancreatitis was back. 

After around 2 weeks of not being able to tolerate food orally an NJ tube was placed. The first tube ended up having a kink in it and by the time I got home the doctor on call told me to pull it out myself and come back in the morning for another tube to be placed. This was complete torture. After having just gone through the procedure and the pain involved with it not only to pull a tube that is much longer than I had expected out of my body, but also to go through the pain of getting it placed the next day was rough. It was also decided that home health would come daily to do blood draws to monitor for re-feeding syndrome. It was a lot to try to navigate work around and I felt very self conscious about the feeding tube while meeting with client's as their therapist. It was also frustrating to have to tell clients I needed to reschedule when home health was running late or when last minute doctor appointments would come up. 

That tube stayed in until the day before Thanksgiving. After doing feeds it is important to run hot water through the line to avoid clogs. As I was using the syringe to squirt water through the tube it would not go and so i thought if i pushed it hard against the counter the clog would be forced down. Instead the clot held steady and the tube itself exploded. This resulted in a hole on the part of the tube the leads into my nose. I felt so defeated pulling that tube out. 

The CF team had brought up the idea of a permanent feeding tube since about a month into me having one. I was very resistant to this idea. It felt big and scary and like admitting that I'm not the type of sick that gets better. A feeding tube for the long term means that my pancreas isn't going to magically get better and I'm not gonna be able to keep up nutritionally. Over time my willingness had shifted. In October of 2021 in my initial appointment about this bout of pancreatitis the dietitian and doctor I was meeting with in the appointment recommended a g/j tube instead of getting an nj tube. I was stubborn and got my NJ tube. At the next appointment a different doctor stated that if I had the nj tube for longer than a month it would be time to look at the g/j tube. I agreed with this deadline and was a little disappointed when at the next appointment a different doctor did not want to do the g/j tube and instead wanted to consider TPN feeds (a type of feeding in which nutrient are put through an IV directly into your blood). 

By the point of the day before Thanksgiving I felt ready for a long term answer and to no longer have a tube in my nose. I also was in no place emotionally or mentally to go through the trauma of having another NJ tube placed. When I talked to the nurse she agreed to let me wait to have the nj tube placed until I could talk to a doctor on Monday. She did however place an order for a feeding tube in case I got desperate before Monday came around. 

Why would you want to have a hole surgically placed in your stomach when a short term solution is available and works for you? This is a question I've come back to a lot. I know NJ tubes work and they are familiar. Yes they are absolutely miserable, but I know what to expect with them. I joined a group for people with chronic pancreatitis and asked about feeding tubes and not one person said the NJ is better than a permanent option. In fact the longest anyone else had an nj tube for was a month before getting the permanent one. Recovery is tough after surgery, but it's a one time thing. It's not missing weeks of work to recover from an nj tube placement or spending hours on the phone coordinating it's placement and then figuring out supplies with the home pharmacy. It is one painful month and then hopefully things are smoother and when I get sick, I'll have what I need to treat myself at the start. It's being able to take a break from forcing myself to eat and finding a relationship with food that can be enjoyable when my body is ready. With pancreatitis food almost comes with a pain price tag attached and I know I'll pay the consequences of every bite. It's no longer stressing about what the scale reads when I go in to the CF appointment because if it's too low it could be time for another NJ tube.  

It is coming to terms with the fact that my body is not normal and I do have a disease that will continue to take little victories. All my fighting and minimizing will never be able to stop the losses, but it can make me miserable. This is me leaning towards uncertainty and trying to move towards what matters given the harsh realities of life. I don't know if the g/j tube is the right choice, but on December 17th, I will give it a try. 

CF poem

Coughing has been a normal occurrence for me pretty much from the time I was born. My first hospital stay for my lungs took place when I was only a year old. The next one happened at age four. According to the x-ray one of my lungs collapsed due to the pneumonia I had. I missed almost a month of school in fifth grade due to pneumonia again. Having a constant cough has been my life. Holding my breath and trying to stop myself from coughing at school, church and so many other places was commonplace. I was told I had asthma and that became the reason that I coughed so much. It was a part of life, but not a main part.

At age 19 that changed for me. It was at age 19 I did a sweat test to find out if I had cystic fibrosis. I remember checking online for my results frequently waiting to find out what they would say. My sister that got tested with me was the first one to see her results. She was in the normal range. I got online and saw that mine was significantly higher than the normal range. At first I thought maybe it was a mistake or else that it wasn’t high enough to be a big deal. I was trying to minimize and stay in denial. Doctor Carveth called me a few days later to confirm my diagnosis and encourage me to set up my first appointment. I did in fact have CF. A couple months later genetic testing came back further confirming this reality.

I was put on a medicine regimen at my first appointment. Part of that regimen involves spending time nebulizing medications. It is supposed to be a daily process. Depending on the medications I am doing it can take between 15 minutes and an hour to get through this process. At first it was exciting and then it became a daily chore. It felt like CF was interfering with my life and getting a daily victory each time I did my treatments. The words I used in the poem and bondage, enslaved, and captive. These accurately describe the feelings I had about doing my treatments.

My lungs improved with treatment and I started feeling better. I quickly fell away from treatments and became an occasional user when I was starting to feel sick. I got bronchitis and the therapy became part of my routine again seeking to get my lungs back to where they were. I started to view things differently. The time on the machine prevented illnesses and helped me feel better. It doesn’t happen immediately and as I’m doing the treatment the difference isn’t too apparent, but it does work. The machine works so that I can feel better and engage in my life. It works and hopefully by spending hours, days, months and years hooked to the machine hopefully I gain more time and health. This poem was written about my relationship with this machine, however there are other things in our lives that much like the machine we have to learn to accept and see the benefits it offers.