Healing Thoughts

My mom, step-dad, and little(st) brother are at the beach this week on vacation. Some waves took my mom down repeatedly, and fractured her femur and a rib. The x-rays also revealed some areas on her ribs with a “moth-eaten” appearance; and possible degenerative disks. Since she’s hours away from home, the doctors at the beach don’t want to continue investigating the rib or spine, but have told her she needs to see an orthopedic surgeon as soon as she gets home and have her rib biopsied.

We’re all hoping it’s osteoporosis, rather than the dreaded “C-word.”

If you can spare some healing thoughts for my mom, I’d appreciate it.

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Waiting.

I was going to write a post about my worsening depression. How being unable to feel productive and capable of doing the things I need to be able to do, and once could do so easily, was driving me into a deeper pit of melancholy and despair. But I didn’t. Because the depression robs me of my ability to get things done just as much as my other ailments.

And then I had a [mildly] productive week. I called Dr. S’ office to check on the neurology referral… which I am still waiting on. They were apparently playing fax-tag with my medical records when I called early last week, and I haven’t heard anything since.

I even worked on submitting an abstract and summary for a poster at an academic conference, with a co-worker. I hadn’t felt that academically capable in a long time. Unfortunately, it didn’t last, and as soon as I tried to read the literature for my own scholarly interests again, my brain went back to sluggish understanding and struggling to make critical connections. I did manage to get three chapters read last week. That’s nothing really; I should be reading more at least 5 or 6 chapters or articles a day, and doing a lot of writing. But I’m trying to stay positive, and take some joy and accomplishment from what I am currently capable of doing.

And I crocheted up a couple of drink cozies as part of an ongoing project I’m working on. They’re for a fundraiser the greyhound adoption group I volunteer with has been invited to participate in, in October. I’m getting a head-start now, before classes start again. I’m making drink cozies, some clutches, and a houndstooth scarf. I’m hoping they will go over well and bring in some nice donations.

Unfortunately, over the past few days I’ve also had a worsening of, what I assume is, gallbladder symptoms. Mainly right sided pain- under my ribs, but some upper left sided pain too. And an increasing feeling of heart burn… but not really heart burn. Plus some right shoulder pain. It’s not just after I eat though. Its starting to be pretty prevalent throughout the entire day.

I’m also having more pelvic pain. That lower right side pain that never went away after surgery is still there. It isn’t nearly as bad as it was before, but it likes to pop in and remind me it’s still there.

I’m exhausted, and I don’t know what to do next. Do I try to go back and see Dr. S and have the gallbladder out? Can I even afford to do that this summer? Will I ever get an appointment with the neurologist? Will it even tell me something? Will I be able to make it through the next semester? Through my PhD program in a timely manner? What do I do if I can’t?

I don’t have the answer to any of these questions. I feel like I’m stuck in a holding-pattern when I desperately want to make some progress and move forwards. But I’m just waiting. waiting. waiting.

What now?

I called Dr. S’office today. Apparently the hospital had my bloodwork in their system, but it never transferred over to Dr.S’ office system. The looked up the results and apparently everything looks “really good.” Since the ultrasound came back with absolutely zero indication of anything wrong with my gallbladder, Dr.S recommends that I hold of on the surgery.

So the gallbladder is hanging around for a while.

But that means we still have absolutely no idea of what is causing my problems. According to the nurse I talked to today, Dr. S thinks I should try the low FODMAP diet… which I’m guessing she forgot we already did. And it didn’t make a difference. So I guess Dr. S is out of ideas. I didn’t even get a new appointment. Tests came back negative, and I guess were at her limit. Which is a shitty feeling. I don’t know what to advocate for here…

But, in brighter news, we did get the neurologist referral all worked out. It was incredibly complicated, requiring an administrative referral from my student health center on top of a referral from Dr. S’ office. I’m going to swing by Dr. S office this afternoon and see if they will call a neurologist and do the official “referring” instead of me calling some neurologist’s office and saying Dr. S wants to refer me, and I have an administrative referral from the health center. I’ve had bad luck getting into neurologists before- and by that I mean, I wasn’t able to see one when my chronic migraines started even though I thought I should, wanted to, and had someone refer me (though he was a chiropractor and a family friend, but the insurance covered the MRI he ordered just fine. I don’t know why the neurologist wouldn’t see me). I’m hoping having Dr. S’ office set up the appointment helps things along this time.

And hopefully we’ll get an appointment in before the end of the month. Because on July 31st, I have to get all my referrals renewed or my insurance bumps them all down to the lowest payment tier and will only cover 65%. Which is no good.

…This whole thing is exhausting.

Getting frustraited.

I get my test report from the hospital/ hospital network through a patient portal online. Usually it takes about 4 days for the report to show up after the test has been completed.

It’s been 9 days since my bloodwork. Bloodwork that should have only taken a few hours to run- maximum. I could understand the wait if it had to go off to a lab, or took a long assay, but these tests could literally be done at the hospital in a short amount of time.

SO WHERE THE FUCK ARE MY RESULTS?!?!

When I got to the hospital and was registering, the hospital didn’t have it on record that I was there for bloodwork as well as the ultrasound. I showed them my copy of the order I was given at Dr. S’s office, and they used that to finish my registration. But I have an odd feeling that somehow the bloodwork got lost in the system, and the report somehow didn’t get properly connected to my account.
You can bet I’ll be calling Dr.S’s office first thing Monday.

I’ll be very mad if the bruise I’ve been sporting for over a week was for nothing, and half the month has been wasted because the hospital fucked it up.

Update

The ultrasound with a fatty meal revealed no stones, no obstructions, no thickening of the gallbladder wall, no sludge, bile ducts within normal diameter, and an ejection factor of 75% 20 minutes after consuming the fatty meal.

So, now I have no idea what to think about my gallbladder. The HIDA was low, the ultrasound was on the high end of normal. Nothing consistently reproduces my symptoms.

It’s been a week since the ultrasound and blood work, and I still haven’t gotten the blood work report yet. Which I find strange. I got the ultrasound report on Monday. And a liver panel and lipase and amylase don’t usually take that long to run, as far as I’m aware.

I haven’t heard from Dr. S about either test. Or the referral to the neurologist, and I’ve had numbness whenever anything presses on my middle finger for about three weeks now. The involuntary leg spasms have been more frequent the past couple of weeks. And the ocular flashes are getting more frequent again. Its something I would like to get checked out before classes start in fall. I’m already behind enough on my own research and academic progress, I really don’t like being behind in classes too.

The PainStation

Almost every night, while we eat dinner, A and I watch our favorite subscriptions on YouTube. Usually Lets Plays from various gamers.

Last night, we were watching the Achievement Hunter’s video: Let’sPlay The PainStation. I’ve embedded the video in case you want to watch, but will put a synopsis below the video in case you don’t.

In the video the Achievement Hunters challenge each other to a game of pong, using the art exhibit The PainStation. Each player must keep one hand on the “pain execution unit” – a metal grate on the side of the game, while playing. When a player misses, and the ball hits one of the designated “punishment” blocks, the player is subjected to either: 1) exposure to heat, 2) electrical shock,or 3) being whipped with a small wire whip. None of the “punishments” are intended to cause damage to the player, but can build in intensity and apparently become quite painful.

What I found most interesting in watching the video was how quickly the players become distracted, and how quickly their ability to play the game decreases. I couldn’t help but think the PainStation serves as an effective example of how hard it is to think clearly and concentrate while in pain; something those of us with chronic pain do every day- or nearly every day, and often at a higher intensity or greater range than was applied by the PainStation.

It was a timely reminder to myself as I grow more and more frustrated with my ability to think clearly and work effectively as I would like. It is remarkable that we get through every day as we do.