Weight

As of this morning I weigh 114.2lbs.

I weighed 120lbs in early July. And 134 in January (and the entire year before that).

Watching my weight trickle down (I was going to say slowly, but it isn’t really slow at all. I’ve dropped a pound a week for the past month.) is hard enough. Getting complements on looking thin is even worse. I don’t want to be losing weight. I want to be healthy. I want to be fit and strong, not thin and weak.

I mean, yes, I am not bloated and distended like I am pregnant anymore, and I am glad about that. But I want my stomach to look flat because I have good abdominal muscles, not because it’s slowly sinking into itself.

I’m tired and frustrated today. And I really wish my stomach would let me just fucking eat (or drink!) something without being in stupid pain or incredibly nauseous.

Advertisements

Autonomic Neuropathy?

Gastroparesis is caused by partial paralysis of the stomach, via damage to the vagus nerve. In many cases this damage is idiopathic, meaning doctors have no idea of what caused it. Mine gastroparesis has earned itself that idiopathic label. But as I’ve been feeling worse, I’ve been looking into causes and symptoms of vagus nerve damage and think that the damage to my vagus nerve might be more extensive then just in the region of my stomach.

According to the Medline Plus definition autonomic neuropathy is a collection of symptoms resulting from damage to nerves in the autonomic nervous system. Chief among these nerves is the vagus nerve. And I have many of the symptoms listed on the Medline Plus site. It would explain why my pupils are occasionally different sizes, why I physically startle at even the tiniest things (like the windshield wipers I just turned on, or someone sneezing), my heat intolerance, my “not asthma, asthma”/breathing suppression, why I don’t notice I need to pee until I almost can’t hold it, why I choke on my spit so easily and feel like something is stuck in my throat sometimes, and why I sweat like I need to cure the drought.

Which, if is the case, what caused my vagus nerve to be so damaged? It seems awfully widespread to be caused by the degeneration in my cervical spine- but could that be it? Could I actually be hopeful that I could address my cervical spine (which up to this point has been blown off) and maybe fix some problems? Or should we be looking more closely for something else that could be causing damage?  I really don’t think my vagus nerve is just going to become damaged without some sort of cause…

But of course all of this requires I talk to my doctor about it- and I honestly don’t know if I have that kind of strength right now.

I hate bringing something up and getting blown off. Having tests come back repeatedly showing nothing. I hate breaching a subject and feel like I’m being judged for not being satisfied with the diagnosis I already have- like I’m seeking out more, when I really just feel like something is still unaccounted for, still missing, from the “what is wrong with me” puzzle. I hate the vulnerability of not being able to do anything if my doctor doesn’t agree with me and turns down my request for more tests or when a specialist declares they’ve done all they can for me and won’t see me again. I have insurance, I have money, I am desperately trying to do everything I can to get better, so why are you making this so difficult? Why are there so many gatekeepers in medicine, whom I must prove I’m worthy to be seen by, to be taken seriously by, to be believed?

 

Apparently I need to discuss this with my therapist on Wednesday. Hopefully then I’ll be able to approach it with my internist and maybe get back to the neurologist. Maybe then we’ll make some more headway and I won’t feel like my world is always collapsing on me.

Maybe.

 

 

 

 

Can’t get a handle on it

Every time I think I have a handle on my gastroparesis, it goes and makes me all nauseous and reflux-y again. No rhyme, no reason as far as I can tell – and I’ve been diligently tracking what I consume and any symptoms it causes.

My endometriosis became constant pain, but at least that was predictable. Having a mix of good days and bad days again is really getting frustrating.I don’t know how to handle it any more. On the good days, I feel better than I have in a long time. But on these bad days I feel like shit again, and I hate it.

And sometimes all you can do is complain about it, so thanks for listening internet, I appreciate it.

Learning Curve

This post is just venting. Sometimes you just need a space to complain.

This gastroparesis is a real learning curve.

What does my body like? What doesn’t it? Are these symptoms from something I ate a few hours ago or is my tummy mad for other reasons?And I keep forgetting to take my Reglan before I eat, like a dummy.

I know its going to take more than two weeks for me to figure this out, since it took me over a year (at least!I have no clue how long I’d been blaming these symptoms on my endometriosis) to be diagnosed, but I get fleeting moments of feeling good again and that only makes me notice the pain and discomfort so much more. I hadn’t even realized how much pain I was in until it stopped (thanks to following GP dietary guidelines).

I meet with a dietician on Monday. I really hope she’ll be able to help me get a new handle on my body, and the food I can provide it.

I have a feeling I’ll be relearning my body for a long time to come.

 

Confirmed

Well, even with a shortened test, apparently it was enough for the radiologist to conclude I do have mild gastroparesis.

I am admittedly somewhat relieved that yet another test didn’t come back and leave us with no answers.

Time to start a gastroparesis diet, and be damn glad the Reglan is working.