So this feeding tube thing. It's not going so well. Ya might have picked up on that from my Facebook posts. Well, I haven't even posted the half of it. Sure I've posted the physical half of it, most of it, I probably haven't even posted the half of that actually...but I sure haven't posted the mental half of it.
I know my last post talked about how I "live my life transparently" for chronic illness vengeance and advocacy or something like that, but until Sunday at the grocery customer service desk I didn't even realize I wasn't even being transparent with myself so I definitely wasn't being transparent with you, my esteemed readers. So this, this blog will be transparent. And I'm already bawling in my bedroom writing it and have been every time I think about writing it for the past 1.5 days.
Because it hurts. I hurt. I'm broken beyond repair right now. I know everybody has pain. I know everybody's broken, I've written about that before. But taking away food from a foodie? That was the straw that broke the camels back. I've been dealing with this for 12 years. I've been doing it with God and humor on my side with a few faithful friends along the way. And I still have all 3 of those. They're just harder to feel right now because before I also had food. Comfort food. And lots of it.
Before I was sick and I would get stressed out I would run and run and run until I couldn't run anymore. After I got sick I would eat and eat and eat until I couldn't eat anymore and cook and cook and cook. Now I can still cook. But I can't eat what I cook. Then I have doctors telling me they want me to eat. So I get all excited and I do eat and it just puts me in a lot of pain and I throw it up or have to go to the bathroom immediately, or can't go to the bathroom at all. It's painful, causes bloating and distension. It causes my autonomic nervous system to go off kilter so my heart rate and blood pressure go crazy, I've had super bad headaches too. So even though I'm encouraged to eat it really doesn't go that well. Except for one thing I figured out, bagels. For some reason I can tolerate a bagel (or most other bread items--gluten free of course) without any side effects at all.
So off to the grocery store I went where I knew they carried my favorite brand of gluten free bagel and got some other items that I wanted to try and some things for my mom and got to the bagel aisle and there were no bagels in stock, so I start reading the tags. There are tags for 2 gluten free bagels, neither of which is the brand I want to buy. Both brands that have tags are brands I know that I do not care for, and if you've tried gluten free you know "do not care for" is code for "tastes like cardboard". I ask the stoker there and he tells me to go to customer service at which point I am told that the brand I would like is not carried there at all anymore even though they have other items there from the same brand. More words are exchanged and a promise to call the next day (which still hasn't come by the way). And then it happened. In the middle of the grocery store, because I can't have a bagel, the only food I know I won't react to, I start bawling all over the place. I can't stop. All I wanted was a bagel...with blueberry cream cheese to be exact...and now I could never have it again?!
The poor guy at customer service couldn't figure out why I was so upset, I'm sure customers had no idea what was going on, heck I didn't even know what was going on. Why was this bagel so darn important to me? Looking back with a more clear vision 2 days later I think in my head that bagel represented all the food I can never eat again. I mean you're talking to someone studying dietetics in school who watches Food Network 10 hours a day usually, loves to cook, and loves to eat and try all kinds of new and exotic foods...who now eats through a tube and can't even chew or taste things anymore. It's a big loss. I've been under a lot of stress with some doctor stuff and some other things too and it all just came to a head, but man was I a mess.
Then yesterday I decide I'm going to buy James MacDonald's book called "When Life is Hard." and re-read it because I've already read it once. I was reading the foreward and in it there was reference to Psalm 42:3 and it says in big bold letters "My tears have been my food day and night, while they say to me all the day long. 'Where is your God?'" Now this person was coming from a very different context. But to someone who literally broke down crying in the grocery store the day before (and had broken down previous and subsequent times for other foods and cravings) because she can't tolerate anything but her tube feed the words "my tears have been my food day and night" stopped her in her tracks. I almost couldn't breathe. I immediately got my Bible out and started figuring out the context and found out that it was from the famous verses "As the deer pants..." verses Psalm 42 which I should have known off the top of my head, but anyway...then if it couldn't get any more solidifying for me, vs. 5 comes along and it says: "Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my savior and my God." and I'm stopped dead in my tracks again, because it has my keyword HOPE in it.
I'm telling y'all with everything I've got going on in my life right now there was no better comfort than knowing two verses away from each other was my BIGGEST problem and God's BIGGEST promise all wrapped up in one tiny package tied up with string! He even places the question of "Where is your God?" right there in the middle, it's almost like he's mocking us saying why are you even asking where am I? I'm getting ready to tell you. I'm right here. Keeping your problems close. Giving you hope. Just like always. Wrapping you up tight. Holding you in the palm of my hand.
I know my last post talked about how I "live my life transparently" for chronic illness vengeance and advocacy or something like that, but until Sunday at the grocery customer service desk I didn't even realize I wasn't even being transparent with myself so I definitely wasn't being transparent with you, my esteemed readers. So this, this blog will be transparent. And I'm already bawling in my bedroom writing it and have been every time I think about writing it for the past 1.5 days.
Because it hurts. I hurt. I'm broken beyond repair right now. I know everybody has pain. I know everybody's broken, I've written about that before. But taking away food from a foodie? That was the straw that broke the camels back. I've been dealing with this for 12 years. I've been doing it with God and humor on my side with a few faithful friends along the way. And I still have all 3 of those. They're just harder to feel right now because before I also had food. Comfort food. And lots of it.
Before I was sick and I would get stressed out I would run and run and run until I couldn't run anymore. After I got sick I would eat and eat and eat until I couldn't eat anymore and cook and cook and cook. Now I can still cook. But I can't eat what I cook. Then I have doctors telling me they want me to eat. So I get all excited and I do eat and it just puts me in a lot of pain and I throw it up or have to go to the bathroom immediately, or can't go to the bathroom at all. It's painful, causes bloating and distension. It causes my autonomic nervous system to go off kilter so my heart rate and blood pressure go crazy, I've had super bad headaches too. So even though I'm encouraged to eat it really doesn't go that well. Except for one thing I figured out, bagels. For some reason I can tolerate a bagel (or most other bread items--gluten free of course) without any side effects at all.
So off to the grocery store I went where I knew they carried my favorite brand of gluten free bagel and got some other items that I wanted to try and some things for my mom and got to the bagel aisle and there were no bagels in stock, so I start reading the tags. There are tags for 2 gluten free bagels, neither of which is the brand I want to buy. Both brands that have tags are brands I know that I do not care for, and if you've tried gluten free you know "do not care for" is code for "tastes like cardboard". I ask the stoker there and he tells me to go to customer service at which point I am told that the brand I would like is not carried there at all anymore even though they have other items there from the same brand. More words are exchanged and a promise to call the next day (which still hasn't come by the way). And then it happened. In the middle of the grocery store, because I can't have a bagel, the only food I know I won't react to, I start bawling all over the place. I can't stop. All I wanted was a bagel...with blueberry cream cheese to be exact...and now I could never have it again?!
The poor guy at customer service couldn't figure out why I was so upset, I'm sure customers had no idea what was going on, heck I didn't even know what was going on. Why was this bagel so darn important to me? Looking back with a more clear vision 2 days later I think in my head that bagel represented all the food I can never eat again. I mean you're talking to someone studying dietetics in school who watches Food Network 10 hours a day usually, loves to cook, and loves to eat and try all kinds of new and exotic foods...who now eats through a tube and can't even chew or taste things anymore. It's a big loss. I've been under a lot of stress with some doctor stuff and some other things too and it all just came to a head, but man was I a mess.
Then yesterday I decide I'm going to buy James MacDonald's book called "When Life is Hard." and re-read it because I've already read it once. I was reading the foreward and in it there was reference to Psalm 42:3 and it says in big bold letters "My tears have been my food day and night, while they say to me all the day long. 'Where is your God?'" Now this person was coming from a very different context. But to someone who literally broke down crying in the grocery store the day before (and had broken down previous and subsequent times for other foods and cravings) because she can't tolerate anything but her tube feed the words "my tears have been my food day and night" stopped her in her tracks. I almost couldn't breathe. I immediately got my Bible out and started figuring out the context and found out that it was from the famous verses "As the deer pants..." verses Psalm 42 which I should have known off the top of my head, but anyway...then if it couldn't get any more solidifying for me, vs. 5 comes along and it says: "Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my savior and my God." and I'm stopped dead in my tracks again, because it has my keyword HOPE in it.
I'm telling y'all with everything I've got going on in my life right now there was no better comfort than knowing two verses away from each other was my BIGGEST problem and God's BIGGEST promise all wrapped up in one tiny package tied up with string! He even places the question of "Where is your God?" right there in the middle, it's almost like he's mocking us saying why are you even asking where am I? I'm getting ready to tell you. I'm right here. Keeping your problems close. Giving you hope. Just like always. Wrapping you up tight. Holding you in the palm of my hand.
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