Monday, June 15, 2015

I'm Out of Spoons

I have been a big slacker lately. Slacking at life. I haven't been keeping up with my blog, or my gratitude challenge posts (but I did buy a gratitude journal, so that's good) and housekeeping has been falling by the wayside and I'm very slow to respond to emails. I feel like I have a pretty good reason for it, though- I feel like death. Or I did. Now I feel like death warmed over. Anyway. Here's one of those random personal posts that will serve as an update on my life, since this blog is supposed to be about my life and all that.

You probably already know that I have a genetic disease called EDS that can cause a bunch of random "accessory" illnesses, and also causes fatigue and chronic pain. And you may remember that I have anxiety and depression. And also a really bad stomach. Seriously, I've been on reflux medication since I was in elementary school, and I feel sick just about every day.

So a few months ago, I started having stabbing pain in my abdomen. For a while it reminded me of a gall bladder attack, except there's one problem: I had my gall bladder removed five years ago. The nausea's been worse, and my appetite is all but nonexistent a lot of days. I had an upper GI scope (which I'm supposed to have every few years) which showed that I've got some polyps in my esophagus, but the biopsies came back showing they're benign (apparently, taking reflux meds long-term can cause one to develop polyps. Fun.) I had some other biopsies done of my stomach tissue, and none of them provided any answers- except that I don't have Celiac's disease. Ok. But I still felt bad, so I started having bloodwork done. Everything seemed pretty normal, and the blood test for Celiac's also came back normal (one or the other test can sometimes be a false negative.)

Then a couple of weeks ago, I got hit HARD with severe fatigue. Two hours to wake up and get out of bed (I sometimes get this sleep paralysis thing where my head is awake but I can't do anything.) Then another hour and a half on the couch before I can even function. I told a few friends that I had lost my coping skills and was operating on "coasting skills," meaning that my primary goal for each day was to put on pants and make it to work. And that's about all I got done. There were at least a couple of days when I was too tired to wash my hair. Seriously. I was so worried. It's a scary feeling not being able to do anything, and then there's the guilt that comes along with not being able to take care of my house or get the things done that I want to do. My mom speculated that I was just having a fibromyalgia flare, since the fatigue really hit after I'd had a busy weekend- a day running errands with Brandon before his brother's graduation; work all day; then an all day family graduation party. Even if there was a semi-logical explanation for what I was feeling, it's still scary. I felt like my battery had run out, if I had one. I just couldn't hold a charge. I was feeling so badly that I was really starting to worry I was dying. I called my doctor and arranged to have a complete blood panel done, which revealed that I was anemic, and a bunch of vital things in my blood were low or at the lowest end of "normal"- my B12, vitamin D (which I always have trouble with- I have almost none in my body), platelets, hemoglobin, all these other random things. One being low would make anyone tired. But I had like, five different things, on top of my other issues that make me a fatigued person at times. All things considered, I'm really proud of myself for making it to work as often as I did, although other people may not understand that.

And then, at the end of last week, I had another appointment to try to explain my increased problems with my stomach. I went in for food allergy testing. My doctor was so nice! He was funny and charming and a kind Christian man whose son is married to the daughter of my parents' church, where I got married. Small world. Anyway. They scratched my back with 150 different things after a long interview talking about all my problems, and 20 minutes later the doctor came back in and said "Jessi, we may have something here. We just might." I had a positive reaction to 22 different things that they tested me for, which is kind of a lot (but could be way worse.) Twenty two! That doesn't mean that I'm truly allergic to all of those things, that they will make me sick every time I consume them, just that my body was  like "hey, no, what is that, nope" when exposed to it. Something's going on there. So I am supposed to embark on a "process of elimination diet" thingie over the next few months. I'll pick six or seven of the red flag foods, eliminate them from my diet completely for 2 weeks, and then start reintroducing them, one at a time, for a week at a time. If my symptoms continue, then I know not to eat that food. However, I am seriously considering just cutting them out of my diet and leaving them out. It's a weird feeling, having this little ray of hope. Like I said, I've felt sick almost my whole life. It's just gotten so much worse over the past few years. Wouldn't it be weird to feel like a normal person? Or halfway normal? If that means giving up these foods, I want to give it a try. It's going to be challenging, because some of the foods are harder to avoid. Like, two things on the list were baker's yeast and potatoes. That's a huge part of my diet- bread and potatoes. I know that's not super healthy to begin with, but that's my life. So this weekend I've been eating everything on tortillas, because that's the closest thing to bread I've found so far (haven't checked out any specialty breads yet) that doesn't have yeast in it. And pretty much everywhere I go, I order fries. Not anymore, I guess. My mom and I like to meet for lunch at this burger place in the same shopping center as her store. The only main dish that they serve that doesn't come on a bun (yeast) is a rolled oyster. And guess who tested positive for an oyster allergy? Plus the only side they have is fries. So we will need to find somewhere else to meet for lunch, I guess. We'll see how the next few months go. I've got a follow up appointment in September, and maybe by then I'll have this whole restrictive diet thing figured out.

Anyway, that's why I haven't been posting as often, and haven't kept up with my regular post, and haven't been leaving my house much lately (not that you would have noticed that.) I have about 15% more energy this week than I had last week, which, while it's an improvement, things are still kind of rough. It's 9:37 in the morning, technically I've been awake for almost three hours (I did take a quick nap) and I've put six things in the dishwasher and made myself a pot of coffee. That's about it. I've stopped making to-do lists for each day and started making lists of things I'd "like to get done this week." But hopefully things will get better soon, between the vitamins I'm taking for the fatigue and the foods I'm eliminating for my stomach. Hopefully the fall will be better than the summer. And spring. And winter. It's something to look forward to, anyway. This is the first time in a long time that a medical professional has told me "there is something that you can do that might make you feel better." Normally they just say "well, that's part of what's wrong with you. You'll just have to cope." And coping is hard. It's exhausting. But now I have a little bit of hope. I don't have french fries or potato salad or Olive Garden breadsticks or guacamole strawberry smoothies or these other things I really enjoy, but I have a bit of hope. And that's kind of nice.

PS If you don't understand the title of my post, give this a read. 


  1. Praying you get it figured out and start feeling better!

  2. I'm sorry you've been feeling so tried. I'm also praying that these allergies tests will be fruitful and that cutting those things out will help!! <3


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