chasing what you need, but don’t want

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Written January 28th, 2026:

As we all know, life doesn’t come with a manual. In some ways that’s the beauty of it, but there are definitely situations where I could sure use one. I’ve had to advocate for my health for quite some time. In the beginning I was terrible at it and even now I’m still learning. I’ve never been the loud one, except that time in 2nd grade when I got pulled out of the classroom because I was being distracting. Did I cry my eyes out as the teacher talked to me? Absolutely. And then I likely never did it again. I really did like that teacher.

There’s been so many times throughout this journey where I find myself in positions where I just don’t know what to do. Somehow things work themselves out either by someone coming through for me or I figure out a new path. I’ve found myself in that situation once again. I’ve been trying to get extra nutrition for several months and most recently to get a feeding tube placed. Which is not a light order.

I feel as though I’m chasing something I need, but don’t actually want. It’s quite the paradox. At the end of the day though, I do need it. It’s not just about weight, it’s about actually being clinically malnourished and iron deficient. SMAS is compression of the duodenum, which is the first portion of your small intestine and connects to the stomach. A large majority of our nutrients are absorbed in the duodenum and the jejunum, which is the second part of the small intestine. Over time the continuous compression has aggravated a large portion of the digestion system. It’s also activating mast cells which further disrupts the system and impacts my whole body.
 
Intestinal Absorption
© 2025 Nutrition and Lifestyle Medicine Clinic


I have done two iron infusions thus far and have one left to go. These incur some pretty hefty migraines so I’ve been getting fluids with it as well. I think the fluids are likely helping the most with the brief boost I get after. The iron infusions take time to give your body the full effect. I’m taking folic acid and lactoferrin as well. They are tablets though, so I’m not sure how well they’re absorbing. Most things I get as liquid, dissolvable, or chewable if possible. I suppose I should maybe crush them up and add to water. Great idea, Ash! Glad we talked this through ;) I’m also low on zinc but want to check my copper and ceruplasmin levels first. The kicker is that after my first iron infusion I had my period which took me out, so I probably didn’t gain much there. What a conundrum! I haven’t done any vitamin IVs for awhile as I had hoped to have that tube placed by now. And the expense is just a lot. Since I’ve already met my out of pocket max for insurance I’m trying to utilize anything that insurance will cover if possible. That might be a new level of achievement hitting that out of pocket so quick ;)

In a month I will be flying to Virginia for my SMAS surgery. The surgery is on March 2nd. It’s more intense than my prior two abdominal surgeries. I will be in the hospital for 1-2 weeks and in Virginia for the month of March. I will stay for my post-op appt then hopefully fly home. If I come back too early and something happens I don’t have anyone here to help me. That’s the joy of these rare(ly diagnosed) conditions.

If you read that and thought holy crap!? YUP! It sure is a lot. I’m terrified and I don’t want to be away from home again for so long without my family. But I have to. If this isn’t addressed I will continue to decline and it could kill me. That’s not dramatic, it’s facts. Ben will be with me a few days at the start and then my mom will be with me the rest of the time. I think my only glimmer at the moment is that it does sometimes hit 70 degrees there in March.

Most days I’m dealing with feeling lightheadedness, debilitating exhaustion, feeling weak, endless brain fog, migraines, my hair is thinning (which I hate 😭), feeling shaky, abdominal pain, and more. I also still look for the glimmers and do things that bring me joy. Sometimes that’s the food I manage to eat, rambling back and forth on voice texts with friends, the hugs from Ben and the kids, flying airplanes with Otis, trying to convince Otis that he doesn’t love dad more than me ;), coloring, watching a movie with Violet, coaxing Theodore to share tales of middle school, crafting with a friend, and more!

My LTD appeal review came back with an “I don’t think you’re sick enough to not work but you can have two weeks to send more paperwork”. I’m glad they enjoyed the light reading of 1,100 pages of medical docs. Since I had a feeling this would happen I sent that email straight to an attorney. So that’s a definite bummer as that money would be very useful right now.

As for my nephrectomy recovery I’m mostly dealing with scar tissue aggravation. But I recently discovered my PT can help with that! I’ve done one session so far. And I can work on it at home as well.

I think that’s maybe enough for now.
The main goal right now is to get me nutrition!

Love,
Ash

For further updates, please visit: https://www.giveinkind.com/inkinds/P4E4L6L

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