To start off- I’m not a doctor, nor do I pretend to be one on TV. I’m sharing my results and what treatments were recommended to me by my doctor in the hopes it’s useful to hear about someone else’s experience. None of this information is intended to diagnose or treat anyone.
I talked about my treatment plan at the end of my 3rd functional doctor visit: Results and a treatment plan for GI issues post.
To recap quickly, it’s a 10 week plan with 4 different phases, and each phase is targeting a part of my diagnosis.
When I look at the plan objectively, it does not seem difficult. I have to take a bunch of pills at different times of day. During certain phases I have to eat certain foods and other weeks I’m to follow a paleo-ish diet.
Practically, however, this is overwhelming to me.
Why?
First, my brain doesn’t work like it used to, because one of my symptoms is brain fog. The best analogy I can come up with is this: my brain used to work like a new computer- it was fast and could handle lots of windows and programs open at once. Currently, my brain works like my 8 year old desktop- it’s got lots of programs and junk on it so it’s bogged down and slow. If too many things are open or happening at once, I cease being able to take input and I will have to go lay down. If I focus on one thing at a time, I seem to do ok. If there are 2 or more things happening at once, I don’t process well.
Second, I have fatigue that is unpredictable. I have a certain level of fatigue all the time. The all-the-time fatigue limits me to 1 big thing a day (going out for lunch, going to the gym, going to church), or 2-3 small things a day (appointment, chores, making meals, picking up the kid from school, etc.). Some days it’s much worse, and I can get up and have breakfast, nap for a few hours, get up and sit upright for a few hours, sort of eat something for dinner, sit around some more, then go to bed. Those days, I have no motivation, and nothing gets done. Before the big energy crash in June, I knew what things would make me tired for a few days. At this point, I don’t always know what triggers the higher fatigue days.
So, on a practical level the brain fog makes it hard to complete sequential steps because any other thing that comes up becomes a tangent. Example: I’m awake! I’ll go downstairs and eat breakfast and take my pills. Oh, the dog wants out. Oh look, there’s tomatoes that are ready to be picked. Maybe I’ll go out to the garden and see what else needs to be picked. Wow, there’s a lot of weeds in the yard…it’s nice and cool out now, maybe I’ll just pick a few. Wait, wasn’t I going to have breakfast? This happens all day long with different things.
On bad fatigue day, things that I would normally do, like cooking breakfast, become really hard. Like prepping to climb a mountain hard. It seems like so much work I just don’t do it. On those days, I tend to eat poorly and don’t eat enough. I also tend to be apathetic, which isn’t great when you’re trying to relate to people.
Knowing that brain fog and fatigue are going to be my biggest hurdles during treatment, I’m trying to take them into consideration while I’m preparing to start treatment. I'm allowing myself almost a week to prepare so that I can give myself enough time to process through everything, and because I want to start treatment on a Monday.
Preparations:
1. A new pill organizer
My treatment plan as given to me by my doctor consists of a giant list of pills with how many and what time of day to take them. This includes every thing over the entire course of treatment, so it’s a little overwhelming since I’m taking certain pills during certain weeks. I already get confused looking at it during the day, so I decided I needed a bigger pill organizer! As you can see, my old pill organizer (the blue one) only had pills for am and pm, and the new one has compartments for four times a day. I’m hopeful that just having all the pills ready to go and not having to think about them will work out for me.
2. Checklists and trackers!
Not only is checking stuff off a list immensely satisfying, but I can make my checklists in Excel, and I LOOOVEEE me some excel spreadsheets! In fact, I decided that a nicely crafted Excel spreadsheet is one of my love languages…lol
I currently have 3 spreadsheets started:
-A 10-week pill tracker that has all the right pills at the right times of day, and has the right pills for the right phases. Being consistent with taking pills is not something I have ever been good at. I’m hoping if I can check off each pill as it’s taken, that I will remember to take them.
-A general daily schedule to help keep me on track. As I mentioned, I tend to get off task really easy. I’m hoping to use the general schedule to help me fill in my day planner appropriately. I’m hoping if I have a plan already written out it will help me stay on track.
3 Not planning/starting many new things; rescheduling things that are close to a meal
I have found it’s hard for me to have events scheduled close to meal times, especially breakfast. Since I never know how sleep will go, I may or may not wake up with enough time to make breakfast AND take all my pills. Anything over the next 10 weeks that is scheduled before about 1pm will need to be rescheduled for the afternoon. For 10 weeks, my whole life will revolve around eating and taking pills.
I had a handful of things that I’ve scheduled for the next 10 weeks. I’m going to try and do them if I can. However, I’m not going to try and plan or start a bunch of new things. For example, a friend told me about a weekly community Bible study on Thursdays from 9:15 to 11:15am. I really wanted to do it, but with it starting early and being close to both breakfast and lunch, I realized it just wasn’t something that was going to work in this season. I realize being social is still important during a time like this, so I will still make plans to see friends on occasion, but only at times that work for me. I’ll probably rely on phone calls more to keep in touch with people because it’s easier to do spontaneously.
I had a handful of things that I’ve scheduled for the next 10 weeks. I’m going to try and do them if I can. However, I’m not going to try and plan or start a bunch of new things. For example, a friend told me about a weekly community Bible study on Thursdays from 9:15 to 11:15am. I really wanted to do it, but with it starting early and being close to both breakfast and lunch, I realized it just wasn’t something that was going to work in this season. I realize being social is still important during a time like this, so I will still make plans to see friends on occasion, but only at times that work for me. I’ll probably rely on phone calls more to keep in touch with people because it’s easier to do spontaneously.
4 Symptom correlation
I did this today! About a month ago, I downloaded a symptom tracker called ‘my symptoms'.
It tracks dang near everything- meals, drinks, sleep, exercise, bowel movements, supplements, more I can’t remember, and there’s even an ‘other’ category where you can add random stuff that doesn’t really fit into another category. Since my only noticeable GI symptom of SIBO is constipation, I went through a csv file I was able to export from the app and see what foods may have caused constipation. For me, I have a lag time of about 2 days between the food and symptom, so it took me a while to go through and try and figure out which foods were the problem. Onions are a really obvious trigger food. It seems that squash may also be a trigger, but not as bad as onions. I wanted to identify trigger foods so I knew what they were.
5 Find recipes
I need to confirm this with my doctor, but I think I eat a paleo-ish diet during phases 1 and 4, and eat a bunch of high FODMAP foods during phases 2 and 3. *Update- I called my doctor to clarify what I should and shouldn't be eating during different phases, and they told me to NOT eat a bunch of high FODMAP foods that trigger symptoms because it can make you feel bad. Good thing, I called....I was remembering my research and not what they told me*
I’d like to find several good recipes for both phases, and have them printed out and ready to look at. I also need to either find recipes that make leftovers, or start doubling recipes…. it’s really nice not to have to cook every night, and this may help to cut down on the number of freezer meals I need to prepare. I’m hoping to do this tonight and tomorrow.
I’d like to find several good recipes for both phases, and have them printed out and ready to look at. I also need to either find recipes that make leftovers, or start doubling recipes…. it’s really nice not to have to cook every night, and this may help to cut down on the number of freezer meals I need to prepare. I’m hoping to do this tonight and tomorrow.
6 Food prep
I know there are going to be bad fatigue days where I won’t want to cook during the process. I’m hoping if I can make and freeze a few meals that I’ll at least be able to eat well on those days. Because of the amount and type of pills I’m taking, I need to take them with a decent meal. A few weeks ago, I ate a small meal and took all my supplements with it and felt really nauseous….it was not fun. I don’t think I’ll be able to prep food for the whole treatment period, but I’m thinking if I could make a few meals for the next 2 weeks it will be a start. I’m mentally preparing myself to do meal prep about once every week or two throughout the process. I’m hoping to do the initial meal prep over the weekend.
There was one last loose end that got tied up today that I was super excited about. One of the antibiotics that was prescribed was Xifaxin (Rifaximin), which is notoriously expensive. My doctor had faxed the prescription into a pharmacy, and we were waiting to see how much my insurance would cover. When I called the pharmacy this morning they told me that after insurance I was looking at about $1300 for the pills I needed. But then they told me they applied some sort of other co pay discount, and it brought the price down to about $200. I was dumbfounded! When the rep asked if I could do the lower amount it took me a few seconds before I was able to say yes! I was so overwhelmed with gratitude with the lower price that when I got off the phone I just spent a few minutes praising God.
The doctor was waiting on finalizing the treatment plan until we found out the price of the Xifaxin, so it felt like a relief to get it paid for and figured out.
So that’s what I’m doing to prepare. Hopefully, all these preparations are worth it!
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