Though I have been having a lot of "run away train brain" that feels like one long hypomanic cycle lately (thanks, IVF meds!), this morning's inspiration was due not to my cyclothymia or anxiety, but to another condition. Back in December, I started getting a huge uptick in migraine attacks. I used to have one about once a quarter, and I began having one or more a week. They lasted several days at a stretch, so I was rarely more than a few days without an attack. It was terrible. For anyone living with chronic migraine that experiences this on a regular basis, you are incredible for dealing with it, truly. What I noticed around the same time was that I was getting an increase in upper GI symptoms alongside my migraine attacks. At first, I just thought it was a change to migraine prodrome. I've always gotten a bit of a sour stomach before the major symptoms of a migraine attack hit, but this past year, I began instead getting indigestion. It felt like someone was inside of my stomach/diaphragm area forcing air up into my esophagus. I felt like I constantly had to burp, which was lovely. In December, with the increase in migraine attacks, it became more pronounced. Then I had a horrific migraine attack over New Year's Eve and Day.
Pause: if you don't want to hear about GI symptoms/vomiting now is the time to stop reading...
I started feeling the indigestion/air in my upper GI middle of the night Saturday night (the night going into New Year's Eve day). It felt like I needed to throw it up, and I did a tiny bit, but it continued to feel like I had food and air stuck in my stomach area. It continued through the next morning when the full fledged migraine attack symptoms hit - extreme dizziness and disorientation, head pain, nausea. I was completely horizontal. I couldn't eat anything or even keep down water, so it made no sense to me that I was still feeling like I had food stuck in my stomach. Finally, at around 2PM, when I hadn't eaten for almost 20 hours, I was able to vomit up all of the food from dinner the night before, which I'd had around 5PM. I am not a GI expert, but I know that my stomach should have digested the previous night's dinner by 2PM the following day, and that in itself was a bit concerning, but I figured it was all part of the migraine attack. The migraine symptoms hung on until late the following day, but at least I didn't feel like I had food and air stuck in my stomach and esophagus, and I was no longer vomiting up water.
But, the upper GI issue never completely went away. The whole first week of January I could barely eat. I'd feel tons of pressure and air at my diaphragm/esophagus area. I assumed I was just taking an extra long time to recover from the migraine attack. It continued to the following week. I had already gotten an appointment with a neurologist - or rather scheduled one, as I couldn't get one until March so I still haven't been. After two weeks of barely being able to eat, and no other migraine symptoms, I decided I also needed to see a GI doctor. Despite having IBS, it's been a while since I've been to one, other than an obligatory pre-colonoscopy consult a few years back. I was actually able to get into someone a couple of weeks ago, and I got diagnosed with gastroparesis. Unfortunately, all of the tests they can do to figure out exactly what's specifically going on - i.e. what might be causing it, etc - they cannot do right now. They all have some sort of radiation or require anesthesia which I obviously can't have during this cycle of IVF. So I got an answer, which I'm grateful for, but still left with a lot of questions.
The past few weeks I've been trying to be mindful of the GI doctor's dietary suggestions - be careful of fats, watch acids, increase protein, eat small meals more frequently. There are also a ton of dietary resources out there gastroporesis, and all of them seem awful - not the quality of the resources, but the dietary modifications they suggest (essentially they say I can eat white carbs, which is exactly the opposite of my IBS dietary needs, and mashed up foods). Add in being a vegetarian, having to take into account dietary suggestions for IC and IBS as well, and going through IVF, in which I'm trying to makes sure I get all the proper nutrients and vitamins and everything else, it's been tricky. So I've been trying to figure out the best lived experience balance. I do not mash up everything baby food style. I do try to limit fats and watch acids. I try foods out that I know are healthy and important for me as a vegetarian trying to get pregnant. I see how they feel and if they feel ok, I continue with them. If they don't, I try to find substitutes that offer similar benefits. I eat smaller portions and try to eat more frequently, although I often feel so bad after eating even just a small portion that I can't force myself to eat until the next meal.
In the past month and a half, I've lost quite a bit of weight. I won't lie, at first I wasn't bothered by it, because, before the diagnosis, I thought things would just go back to normal once I got back to usual eating patterns. But the weight loss has continued. It's not felt super alarming, but I have noticed clothes fitting looser and looser. Still, it didn't feel like anything drastic, and I figured it would likely level out at some point, especially as I've been trying to push myself to eat a little bit more when I can. But this morning, I looked in the mirror, and I was alarmed. I had been doing a light workout, so had on a top in which I could see my shoulders and arms (something I don't see in the mirror a lot in winter). I felt like I looked borderline sick. Not my face so much, but my arms and shoulders were skinny and almost angular in a way that they rarely are. I'm an 'athletic build" by nature. But I had a sudden flashback to my early 20s, photos of me skin and bones, when I suffered from both severe IBS bouts and disordered eating. Back then I lost about 20 lbs between the two, and I'd only been a little over 100 lbs to begin with. I remember years later seeing pictures from that time and thinking "how could I have not realized how sick I was?" Of course, that is the nature of disordered eating, and why it's disordered - because the brain doesn't even necessarily see the weight loss, and even it does, it doesn't recognize it for what it is.
Luckily, this time I'm in a significantly better place mentally. I am no where near as thin as I was back then - in fact, I'm probably close to the weight I was naturally before the disordered eating and IBS bouts started. But seeing my shoulders and arms look skinny, less muscular, more angular my brain sent off warning flags that I need to pay more attention to the weight loss. I'm grateful that this time around, nearly 20 years later, the semi-rapid weight loss is something I recognize as concerning, and not something to be celebrated. I know that it's something I need to keep an eye on, and that I have to work hard to make sure that even if I can't eat a lot, I'm getting in the proper vitamins and nutrients, proteins and healthy fats, to the degree that I can without the fats causing extreme discomfort. It will always be a tricky balance for me to keep an eye on my actual weight (as in numbers on a scale), because I know that doing so was a major obsession during the disordered eating years. Since being in ED recovery, I've rarely weighed myself unless obligated to do so at a doctor's office or when required to do so after egg retrieval to make sure I wasn't experiencing OHSS. But I may need to find a temporary truce with the scale, to monitor my weight loss and make sure it's not too rapid or intense. (Yes, I can see how clothes are fitting, but I've been into more comfortable, slightly looser clothes lately, and that makes it tougher to gauge). I'm extremely grateful to be in a place where I feel I can do this.
This gastroparesis diagnosis has been a difficult one. Moreso than most of my other diagnoses. It came at an extremely unfortunate time (though really there's no good time), with my having recently started a new round of IVF. It's bringing up old ghosts from a time in my life in which I was the least mentally healthy version of me, and even though I'm seeing them from the other side, recognizing the ghosts for what they are, remembering the place I was once in can be extremely emotional. I'm grateful for the knowledge and perspective I have now, for the many tools I have in my mental health toolbox, for the support of those closest to me, and for all of the resources I have through my advocacy efforts, to learn and understand this diagnosis better.
And while I'm not generally a "look at the silver lining" type of person, because I think it tends to diminish someone's difficult experience, this morning's glance in the mirror and subsequent shock inspired me not only to double down on my efforts to stay as healthy as I can with this condition, but to blog about it as well. And the blogging itself - that's a part of my history that actually feels good to be revisiting, even if the cause for doing so, not so much.
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