A few months before our wedding, my relationship with eating became a bit strained when I stopped tolerating solid food. A few months later, I was safely "single" when I was down to just liquids with no solids in sight unless I wanted to also have an epipen next to my plate and the ER on speed dial. For close to a full year after having my first feeding tube placed, I was still very much "single" as I still couldn't eat anything solid without risking anaphylaxis. Then Xolair entered the picture in February 2016...and I entered the "it's complicated" phase of my relationship with eating which is where I'm still hanging out.
I get asked a lot what I can eat or if I can eat or what foods are safe if we've been invited over for dinner. I don't always know how to answer...usually I just say, "It's complicated..." But it also gave me the idea for this blog post, so if you've ever wondered and been afraid to ask or asked and been more confused AFTER my explanation, I hope this fills in those gaps!
This was from May 2017 when I had
Herman V (turtle) and Sherman II
|Depending on my symptoms |
and overall condition I'll use
between 4-8 boxes of this
formula each day.
So as you can imagine, that's not exactly conducive to living...my relationship with eating was very much "single" and I had to choose whether I was going to avoid food and starve or attempt to eat and risk my throat closing...not exactly a fun decision to have to make. That's when Herman I made his entrance. From having Herman I placed until February 2016, I stayed "single." I could tolerate some soft foods occasionally, but for the most part lived on slurpees (literally), smoothies, and my tube feeds.
|Soft food isn't all bad! Dole|
Whip from Disney qualifies =)
In February 2016 I was on Herman III, and we finally got insurance approval to start Xolair for my mast cell disease. By April I was able to tolerate solid food again without risking anaphylaxis. Over the summer I continued to improve, and by the fall, I was able to eat almost normally when I went to Disney with my mom and when Nick and I traveled out to CA. I was still running my tube feeds, but it was not intended to make up all, or even the majority, of my calories. I was back in a loosely defined "relationship" with eating.
Then we hit November 2016 and everything hit the fan. I was very much "single" yet again as anything I would eat didn't stay in me for long. I was still on Xolair at the time, so I wasn't going into anaphylaxis from digestion this time. Instead, I would either throw up or otherwise expel any oral intake from my body numerous times a day and often throughout the night as well. This dragged on for close to 9 months before we made any progress in controlling these symptoms. And that brings us to where I am right now...in a relationship with eating that can only be described as being very much "complicated."
|Trying a Kylene-friendly |
(aka allergy friendly) DONUT
at Disney Springs in 2016 =)
These questions are tough to answer because my answer one day can be completely different from my answer even just from the day before. Sometimes my answer at 10 am will be different than my answer at 6 pm on the same day. Let me try to explain this a bit more with what is called the Bucket Theory.
The idea is that the bucket represents each day, and severe reactions or anaphylaxis occur when the bucket overflows. Ideally I start with an empty bucket when I wake up in the morning. Anything that could be a trigger adds some amount of liquid to the bucket. Hot, humid weather in the summer might add 20 oz. Eating solid food might add 15 oz. Being exposed to cigarette smoke outside a store might add 50 oz. You get the idea. Pretty much everything I do has some sort of an impact on the amount in the bucket.
But not everything is adding to what's in the bucket. There are some things I can do to help reduce how much is building up in my bucket. My morning medications might take out 10 oz each. My IV meds might take out 50 oz. Drinking fluids with electrolytes might drop it another 20 oz. A nap might lower it another 15 oz. Moderate exercise usually can drop the volume another 20 oz or so (however intense exercise would add to the volume).
Then there are other things that initially will appear to increase how much liquid is in the bucket, but in the long run actually decrease the total amount. It's like when you use a scoop to get liquid out of a bucket but before the amount drops, it first seems to increase due to liquid being displaced by the scoop. That is what happens with Xolair. The injection might appear to add 50 oz to the amount in the bucket, but once things settle it really took away 100 oz. The only challenge is that if the bucket was already almost full, that 50 oz could still cause an overflow even though it didn't really add to the total volume.
Now, remember when I said "ideally" I start with an empty bucket each day? Ideally I would get an empty bucket each day, but that's not always the case. I also said that when the bucket overflows, that means anaphylaxis. Which is true, but there are ways to buy some time. If I see my bucket is almost full, I can make the choice to spill some of it into a second bucket which gives me a bit more room to tolerate additional triggers. But that second bucket doesn't come from no where...that bucket is for tomorrow. If I choose to let some liquid spill over into that second bucket to give me a bit more leeway today, that means when I wake up tomorrow, I'm not starting with an empty bucket. That means I will have to work harder to get liquid out (more meds, more time to rest, etc.) or I have to avoid triggers (not going out, sticking to only liquids/soft food, etc.).
That is where this connects with what I can eat. Liquids do not add anything to the bucket. Actually, if I'm drinking something with electrolytes in it, it can actually help lower the volume in the bucket. Solid food does add to the bucket. On a day that I have mostly been at home relaxing with Nick or doing a puzzle, I have a bit more room in my bucket to try eating solid food. Compare that to a day where we were running a bunch of errands, maybe I had an appointment, and I didn't sleep well the night before. My bucket may be almost full and solid food could push me over the top. I might wake up with an empty bucket and be able to eat something mid-day, but then get exposed to cigarette smoke somewhere, and now my bucket is almost full and the solid food that was okay earlier in the day is no longer a good choice.
I hope this gives you a glimpse of why my relationship with eating is very much "complicated." If you want to invite Nick and me over for dinner and ask me a week before what I can eat so you can prepare something, I don't always have an answer then. You may see me eating something one day, then unable to eat anything another day. There are foods that are safer than others (some solid food adds more to the bucket than other solid food), so I can give you a general idea of what I can or cannot eat, but even I don't always know until we're sitting down to eat what I can realistically eat.
|Picnic with my best friend on our trip back in September!|