First Entry in a While
Apr. 7th, 2017 07:27 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cathuggerNot sure why I'm attempting to post something now considering the fact that my mind is so blank. Just got back from a long appointment. Actually, the appointment wasn't that long itself, but the trip plus chaos and drama in the car took up time and energy. I feel so empty right now but am scared of trying to fill that empty spot... just so it doesn't feel like I keep losing everything again... if that makes any sense.
On the bright side, just being able to type out words and hear the clicking of my keyboard seems to be grounding me. I think I feel like I have more freedom, too.
I hate being reminded of all the time and resources I take up by existing. Being sick... being an incompetent person who doesn't do anything... the fact that my family already has enough trouble with conditions that doctors/researchers don't know much about... me being really hard to deal with in general... I don't know. And, because of a lot of this, I'm the reason someone wants to die.
I'm starting to numb everything out more, but I hate what feeling nothing... feels like. The more time I spend feeling nothing, the worse this restless emptiness feeling gets. (So I can't say I'm really "feeling nothing" after a certain period of time.)
Anyway, the reason I had the cardiologist appointment today was because I needed him to sign off that, from his perspective, I was ready for surgery. (Can't remember if I've talked about this here yet, but some doctor finally ran the right tests and found something that was "significantly" wrong with my cervical spine. C1 and C2 are slipping off of eachother way too much, and there seems to be some deformities in that area as well. Plus there's wayyy too much space in between them. Like C1 was 2x or 3x further above C2 than it should be. (Will my neck be noticeably shorter after surgery???) And because I have a mild Chiari malformation issue and spinal fluid blockage (or however you say it), he'll be removing a bone behind my neck as well.
Also, some important veins can be temporarily closed off by my neck subluxing, so that could explain the vision loss and floaters I get when putting my head in certain positions, especially when my POTS is acting up.
To keep going with this updating thing, I also got a PICC line inserted at some point (for IV saline five days a week). With all my ups and downs, it's hard to tell how much it's helped, but one thing we know for sure is that I gained 6 pounds since starting the treatment. I'm still underweight, but holy shit, I don't think I've ever weighed this much. Since some point before the fluids, my BMI (yes, I know that system isn't perfect, but it's a way to show the changes) has gone from low 16 to high 17. So I'm almost up to a "normal" weight, though I seem to have smaller bones that anyone else I' remember meeting, so I could be closer to a "normal" weight than I thought. Fuck you, dehydration!!
Typing all that was distracting. I should probably get something to eat. Back to the weight thing, I haven't even been eating that much lately due to mental health reasons. I wonder if I could get up to 110--I mean I only have 6-7 (depending) pounds to go. But. yeah. food. I'll probably put that off for a little longer, and then we'll see.
On the bright side, just being able to type out words and hear the clicking of my keyboard seems to be grounding me. I think I feel like I have more freedom, too.
I hate being reminded of all the time and resources I take up by existing. Being sick... being an incompetent person who doesn't do anything... the fact that my family already has enough trouble with conditions that doctors/researchers don't know much about... me being really hard to deal with in general... I don't know. And, because of a lot of this, I'm the reason someone wants to die.
I'm starting to numb everything out more, but I hate what feeling nothing... feels like. The more time I spend feeling nothing, the worse this restless emptiness feeling gets. (So I can't say I'm really "feeling nothing" after a certain period of time.)
Anyway, the reason I had the cardiologist appointment today was because I needed him to sign off that, from his perspective, I was ready for surgery. (Can't remember if I've talked about this here yet, but some doctor finally ran the right tests and found something that was "significantly" wrong with my cervical spine. C1 and C2 are slipping off of eachother way too much, and there seems to be some deformities in that area as well. Plus there's wayyy too much space in between them. Like C1 was 2x or 3x further above C2 than it should be. (Will my neck be noticeably shorter after surgery???) And because I have a mild Chiari malformation issue and spinal fluid blockage (or however you say it), he'll be removing a bone behind my neck as well.
Also, some important veins can be temporarily closed off by my neck subluxing, so that could explain the vision loss and floaters I get when putting my head in certain positions, especially when my POTS is acting up.
To keep going with this updating thing, I also got a PICC line inserted at some point (for IV saline five days a week). With all my ups and downs, it's hard to tell how much it's helped, but one thing we know for sure is that I gained 6 pounds since starting the treatment. I'm still underweight, but holy shit, I don't think I've ever weighed this much. Since some point before the fluids, my BMI (yes, I know that system isn't perfect, but it's a way to show the changes) has gone from low 16 to high 17. So I'm almost up to a "normal" weight, though I seem to have smaller bones that anyone else I' remember meeting, so I could be closer to a "normal" weight than I thought. Fuck you, dehydration!!
Typing all that was distracting. I should probably get something to eat. Back to the weight thing, I haven't even been eating that much lately due to mental health reasons. I wonder if I could get up to 110--I mean I only have 6-7 (depending) pounds to go. But. yeah. food. I'll probably put that off for a little longer, and then we'll see.
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Date: 2017-04-09 05:02 am (UTC)no subject
Date: 2017-04-10 04:14 pm (UTC)