My world isn’t spinning, but it definitely isn’t still either. It’s a weird state of dizziness that I don’t know how to describe.

I’m not lightheaded. Actually, my head feels like it weighs a ton. But it does feel like a balloon, far disconnected from the rest of my body.

I’m uncoordinated. My body awareness is minimal. I’ve run into everything today, and toppled over standing still.

My mind is stretched to it’s limits just existing. Like someone left a manuscript out in the pouring rain. Everything that once was there, sharp and delineated, is run-together – smeared and weeping into each other. Nothing is distinguishable anymore, but the evidence of something that once was still remains.

I haven’t even been writing my symptoms down to take to doctors lately. I’ve stopped tracking my meals. Everything is so much effort. And nothing seems to be making a difference.

Today is going to be a long day.

Today I’m simply existing.


Tilt Table Test Tuesday

Inspired by BC Becky, I’m going to write this post in  a different way, eliciting a more first person, autoethnographic, style. Since it was only yesterday, this test is still relatively fresh in my mind, so we’ll see how it goes.

This hospital is different every time I enter. There is always some new construction going on; this time, its the outpatient laboratory getting some sort of renovation. The temporary walls seem to be eating up the waiting room, which is surprisingly empty.
This hospital is very personal; apparently we have a large population of elderly folks around town who enjoy volunteering. You first check in at a small desk, where 3-4 of the volunteers sit, giving your name and procedure in trade for a small piece of paper with a number on it. The volunteer walks the fifteen feet over to the registration offices and gives them the information they just took down, while you sit and watch. This wait was short. Within a minute I was being called to registration desk 1. The registration process is slow, and tedious. And not having caffeine in preparation for the tilt table test makes my eyes heavy. But it is a good, easy going time to relax away any of the pre-test jitters I had been feeling. I get my “jewelry” for the day–the plastic wrist band with my patient information–and another volunteer comes to collect me. She has another patient going up to cardiology, an elderly man, and we walk together down the hallways making small talk about the lovely weather we’ve been experiencing. She drops us off in the waiting room on the second floor.
I am, by far, the youngest person there; and soon I am the only person there. The gentleman I made the trip with sweetly apologizing for getting to go first while I still had to wait.

I fiddle with my phone a bit, checking Neko Atsume and Instagram.

The nurse calls me with a smile, and I follow her to the “stress test” room across the hall. She moves a foam cushion from the chair next to a small table for me to put my purse, my bag of medical records, my cane, and my jacket. I  rest on the edge of the chair as she explains the procedure. I had, of course, already looked it up and watched a few YouTube videos on it, so I had an idea of what to expect. Another nurse comes in and offers to lend a hand helping get everything set up. I sign the permission form, and use the step stool to climb into the bed. The second nurse brings me a blanket; they keep the room cold for the patients who have to use the treadmill set up to my right.

I get an IV. The nurse who lead me into the room and explained the procedure does it. I recommend my good arm, and give tips; this isn’t my first time being poked. She does it so much better than most though. One sharp jab, no leaking, no mess. I’m impressed. I can’t recall anytime that has happened before; usually there is a lot of digging around and a mess of blood down my arm. She flushes the catheter with saline, and that familiar smell/taste floods my nose. Then she puts the cap on and tapes the whole thing down. It’s just in for “good juju” she says. Its better to have it in, in case I pass out and needed it, but if they put it in, I won’t need it. A blood pressure cuff goes on the other arm.

Then the electrodes go on. I was instructed before hand to wear comfy clothing, so I didn’t have to change at all. Sticky pads go on my chest and stomach. They are cold. The second nurse works on attaching me to a tangle of wires. And then they strap me in. It’s kind of like seat belts, but more numerous.  Straps across my legs, knees, stomach, and upper chest. It’s comforting to know they’re there, ready to catch me if need be. And I don’t feel constrained at all. The second nurse brings me a sheet, and tucks it in under my shoulders so my arms can be warm too, and I appreciate the extra time and consideration she took.

Then the lights go out. It’s peacefully dark, sunlight streaming through the shades of the large windows that make up a wall. I close my eyes, resting back against the bed. I’m exhausted after all, and it’s nice to have a moment. The blood pressure cuff tightens and releases. 80/60 – or something close to that. And then the bed is tilted up.

Wosh. That feeling when you stand up too fast. My head is light and spins a bit. My eyes were closed so I don’t know if my vision blacked out, but I could hear the nurses talking to me the whole time. They asked how I was doing, and I told them it felt like I stood up too fast, but otherwise I was fine. The blood pressure cuff tightens.

“Everything is looking good here” the first nurse informs me. I open my eyes, and soon it is just she and I in the room. Within a few moments the back of my neck is burning and prickling. I inform her, and she asks if that is a feeling I get often. It’s hard to answer; it’s happened before but I wouldn’t say often. I think she made a note of it but I didn’t look over.

The blood pressure cuff tightens again, then releases. I think it’s been five minutes. My feet are starting to feel hot and stingy, and I can’t help but wiggle my toes, even though I know I should just be still. I share that information with the nurse. Some more time passes before my fingers feel the same way. Again I let her know. We casually talk about her new car being in for repairs after being hit. She tells me again that everything is looking good.

I don’t know how much time has passed, but I’m thankful to have the table behind me to rest on. It is hard standing still; I almost never am still. My legs are getting tired, and I let my knees rest on the straps for a bit of support. My breathing is also feeling a bit labored – like I have to concentrate on it to get enough air. I don’t tell nurse; I just focus.

Once again, she cheerfully tells me everything is looking good. At this point I’m more upset by that than anything else. I was really hoping this test would show something. I make a comment about that being a double-edged-sward; it is so disappointing when test after test gives you no information to move forward with.

I close my eyes again and focus on breathing. My whole body feels as if it is shaking against the table. If I could will myself to faint, I would…but I can’t, so I concentrate on being still, on breathing as steadily as I can. At this point my breaths are inconsistent, wanting to rush up in frequency. I try to keep them slow and deep, but I’m not too successful. Some are short and rapid, some are longer, but all are relatively shallow. The blood pressure cuff has taken a few more measurements, and I can hear the machine printing my test results continuously.

“Just a few more minutes”

“Oh good, I’m shaking pretty much everywhere. I’m looking forward to the bed being laid back down.” I laugh lightheartedly, but I mean it sincerely. It is taking me a lot of effort to keep myself standing, even though I am leaning against a bed and letting the straps hold me up. The blood pressure cuff tightens again. It’s been 20 minutes.

“Alright, now, people think going down will be better but often it’s worse” she warns me. I expected as much, having noticed that before. The bed slowly eases back to a flat surface and a reverse wosh rushes me. It feels like the world is spinning. I close my eyes, letting my body completely relax into the bed. It feels so good not to be standing. I desperately want to to curl my knees to my chest and roll onto my side, but I’m still strapped down. I try to think only about breathing.

The blood pressure cuff starts measuring more frequently. And the nurse has stopped telling me everything looks good; I wonder if it is because of what I said, or if some difference has actually been noticed. I try not to be to eager for the later, but I can’t help but have a lingering bit of hope. In a way it feels wrong, to wish for something to be abnormal on the test, but I don’t know if I can handle the test coming back completely clear either.

“How you doing sweetie?” she inquires, still watching the testing equipment. The printer is steadily working. I think its been 5 minutes; Maybe 10.

“Everything thing feels like it’s still moving.” It’s true–eyes open or closed I don’t feel like I am still, laying on a non-mobile bed. I actually get this feeling a lot–after the car stops, after the elevator stops, sometimes just laying in bed or sitting in a chair. I don’t tell her that though, it didn’t really dawn on me.

I think about the tests I read about online, which stand you up for up to 45 minutes if you don’t faint, and administer a medication to alter your blood pressure if nothing happens after that. Clearly that isn’t going to happen today. On one hand I am relieved, because I don’t think I could stand for another 20 minutes; but on the other hand I’m kind of disappointed that the test may not have been thoroughly completed. Partially conducted tests, or inappropriately conducted tests, with normal results can be such a barrier to getting further testing or treatment. I’m too tired to protest, or even inquire further though. All I can really think about is curling into a ball.

I lay there for another 10 minutes, I think. Slowly feeling better, at least the world has stopped moving. The nurse asks if I drove myself, and I tell her I did. She tells me she wants me to sit in the cardiac waiting room for a while, until I’m no longer dizzy. There are sodas in the fridge, and peanut butter crackers if I need them. It’s not much, but it is something. I am honestly excited to have some soda. Caffeine is my friend.

Another nurse comes in and tells me to sit up slowly. I laugh and remind her I’m all strapped in and hooked up. She laughs too, then removes my IV, the electrodes, and unstraps me. I ease into a seated position, then let my feet slip onto the floor. Once again, I am thankful for my cane’s steady support when I am dizzy. I lean my weight against it as cross the hall to the waiting room.  There is a mini-fridge against the wall that I hadn’t noticed earlier, and I’ve never been happier to see one. I pluck a miniature can of coke from the self. I’m the only one there, so I take my time sipping it and posting a picture to Instagram. The nurses’ office shares a door with the waiting room, and it is ajar. I can hear them discussing a need to revamp the procedures for the tilt-table test; they perform it so infrequently. Once again, I am concerned about the accuracy and completeness of my test, but there is nothing I can do now.

After about 20 more minutes I’m feeling better. My legs are surprisingly sore for just standing, but I’m not feeling dizzy or lightheaded, just exhausted and fatigued. Everything requires so much effort.

I go shopping to distract myself from the possibility of the results showing nothing… but it doesn’t leave my mind, and I anxiously await the report or hearing back from my doctor. Normally I get a copy of the tests raw results (pictures, printouts, etc.) for my binder; I can pour over them while I wait. But no such luck with this one. I just have to wait. And waiting sucks.


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.

Chronic Illness: The Munchausen Effect

This is a fantastic post, highlighting something I have been struggling with a lot recently. Especially this past week…
Over the course of Sunday/Monday night I kept waking up and couldn’t sleep for a long time. Then, at one point, I was laying on my back with my arms crossed over my chest and started shaking uncontrollably- I was conscious during this but couldn’t voluntarily move or stop the shaking.
The shaking lasted a few seconds, stopped for a few seconds, and that repeated about 3 times total; I was able to move one leg during the break sessions but not my arms or anything else.
After that all stopped, I started having hallucinations. They started with an auditory hallucination, where when I turned my head to the right I could hear very loud music, but it stopped if I turned my head to the left. Then I had one hallucination that involved Mr.Liar waking up and saying something to me (I can’t remember much of the details on this one, but I do remember a feeling of anxiety) and I only realized it wasn’t real when I noticed the night stand wasn’t the same as what we actually have next to our bed. The last one I remember was of the dog coming into the room, barking once, and whining–all of which is very unusual for him to do; he only does it is he is feeling very sick and needs to go out immediately. I realized this wasn’t actually happening when Mr. Liar didn’t wake up/get up because he would immediately do that if the dog was really there.
Now, three days before hand my psychiatrist had started me on Wellbutrin XL, hoping it would help with my brain fog and fatigue. So my first though was that this was a drug reaction. And yet I still took my prescribed dose when I got out of bed that morning. I knew I really shouldn’t have, and when I called all my doctors to inform them of the situation they said to stop taking it immediately, but I have to admit, I was kind of hoping I would have a similar reaction at work that day… somewhere were someone else would actually see it, and immediately take me into medical facilities. Just a bit of back up to reinforce that I didn’t just imagine the whole thing, That it actually did happen…
At the same time, it was a horrible experience, and I am incredibly glad it didn’t happen again, but I have been struggling with this “Munchausen Effect” feeling all week (and honestly before that, but this week really brought it front-and-center to my attention.)

Thank you T for writing this and articulating the feeling so well.

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.

Foggy? Moment

I tried to unlock the unlocked building door with my office door key when coming into work this morning… It’s going to be a long day.

Thanks cognition. Guess I won’t be getting anything done.

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.