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.

Imposter Syndrome

In Academia there is a prevalent feeling referred to as Imposter Syndrome–the feeling that you’re a fraud, that you don’t belong. It’s a feeling that, despite any evidence to the contrary, you don’t deserve to be where you are and don’t know why others think you’re worthy or valid to be where you are. It makes you question yourself, your abilities, your worth.

And I feel like having undiagnosed health conditions is the same, in a way. An Opposite Imposter Syndrome.

It starts because I know something is wrong. But then test after test shows nothing conclusive; doctors ignore me, or throw up their hands in defeat; symptoms are not constant and leave not only doctors but me questioning their validity.  Am I experiencing these things, or simply making too much out of something normal? Am I actually sick? Is there something actually wrong?? Am I actually a hypochondriac?

Unlike Academia, where I continue to have evidence supporting my abilities, here all I have to reassure myself is that I am doing what I can to feel better… I am visiting doctors and pushing for tests because I do feel poorly and do want to be taken seriously. I have been correct twice about conditions that were hard to diagnose (endometriosis, gastroparesis). I am feeling these things, which are a departure from my normal; and once they become my normal I do almost forget about them to the point that I don’t even think to mention them to doctors anymore.

But then I still question things, like:

Do I want to feel better?
I mean, my obvious answer is I do. I do. The two years I had of endometriosis relief have been wonderful, and I am certainly not enjoying those symptoms returning in anyway. I would love for them to be gone forever. …But I don’t… I don’t know if I know how to be healthy any more. If I was to wake up tomorrow and be completely healthy, what would I do? How much of my time would I spend just waiting for symptoms to return?  Which I guess it just comes down to adjusting to changes. I’ve adjusted to these changes, I would adjust to being healthy again, and would enjoy it.

Am I sick enough to behave like I behave? Am I using being sick as an excuse or am I actually doing things according to my limitations?

…I kind of lost my train of thought here, and my brain is a jumbled mess. I guess it all comes down to: questioning yourself sucks.

The “sorry”

I talk a lot about my illnesses. I try to be transparent and open as possible about what I’m going through and how I’m feeling in the moment. Sure, I’ll do the customary lie, and say I’m fine or doing okay to well meaning strangers who are trying to be polite when they ask how I’m doing. But with people I know, and on social media, I try to be both honest and upfront about how I’m doing. Why? Because this is who I am.

Being ill in any way is often stigmatized, and even moreso ignored. But being ill is a part of my life, and a part that will never go away. It is a part I need to come to accept, and even embrace. My illnesses don’t define me, but they are a part of who I am; they shape my every day experiences and color everything I do. I have to consider my illnesses on all occasions, and I don’t want to be ashamed of that, or hide that. It is part of my experience. My life.

But I’ve noticed people don’t know how to respond. The notion of talking about your illnesses is so uncomfortable (especially stigmatized ones and chronic ones) for most people that it simply can’t exist.

People feel the need to offer apologizes for how you’re feeling. I get of a lot of “sorry” when I’m certainly not looking to make anyone feel bad about my experiences. And I get “sorry” is in part sympathy–and maybe empathy–a reaching out to express something because they otherwise don’t know how to respond. But sometimes it just feels uncomfortable. Maybe because I’ve accepted this is my life, I feel that you can too.

And I don’t know what response I’m looking for, if any. I don’t know what I would find preferable for someone to say to me when they are looking to express some connection for what I am feeling and wish me well… Maybe, “I hope this moment passes quickly.” ? Because “Hope you get better” or “Hope you feel better soon” sort of rub the wrong way with chronic illnesses… even when I know the intentions are kind and genuine. I won’t get better;even if after moment passes, it will return.

Do any of you other spoonies have thoughts on this? I’m sure I’m not the only one who has experienced these responses and felt these feelings. Is there any responses you prefer? And, how do we help the healthy community adopt and accept these responses?

 

Almost 2 years post-op

I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.

It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.

And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.

I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.

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.

 

 

 

 

Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with. 😉

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!

Gastric Emptying Scan

I had my gastric emptying scan yesterday.

It was a 2 hour procedure, with images taken every 30 minutes. I walked back and forth to the waiting room between the pictures, and laid down for the scan.

I haven’t gotten the official results yet, but from the table on the copy of the images I got, it looks like at 120 minutes my stomach was about 48% empty.

Now, from reading up online it seems this may or may not be normal, and a 2 hour scan is really not as adequate for diagnosing gastroparesis as a 4 hour scan.

At 2.5 hours, >40% retention is considered slow gastric emptying, according to this research.

Would I have had >8% emptying in another 30 minutes? I know I was still burping and tasting eggs and orange juice for the next few hours after the test. So something had to still be in my stomach 4 hours later – was it >10% of what I had eaten?

I don’t know, we didn’t do the test that long.

Ugh.

I would have happily stayed at the hospital for 4 hours if that had been an option made available to me. Why do the shorter test if it isn’t as reliable?

I’m continually frustrated by the medical systems lack of standardization and evidence-grounded practices.

And I’m continually thankful I have the resources and abilities to find more information and call out doctors and medical practices. Or else I wouldn’t have an endometriosis diagnosis, nor a gallbladder right now.

But it is bullshit that I should have to do all of this independent research and the medical system isn’t build on doing what is best for their patients in the first place. Because it should be. We should aim to do the proper test, with proper procedures, the first time. And we should make sure patients are informed as possible about the procedures they are going in for so patients can call out inappropriate practices that arise.

I guess I should have researched the results of a gastric emptying scan more thoroughly before my test, so I could have questioned the 2 vs 4 hour procedure. Not that it would have been any more likely for me to have the longer scan done, but at least I could feel I addressed it.