The Walking Dead (disambiguation)

I’m sorry about our luck, as there will be no fun or gratuitous head-smashing here today.  This is about my week and feeling like a living dead girl at the end of it (hi Rob Zombie!).  I may have wanted to smash some skulls, but not for the right reasons.  Right reasons; the person is formerly dead, rotting, reanimated and craving my very fucked up internal squishy bits.  Can I take comfort in this?  No matter how fucked up I am, zombies don’t discriminate.  I’m still 50% edible, save for one very rare suborder of zombie: the vegan zombie.

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One thing I take issue with is dialysis three times a week.  I understand the frequency is determined by how well my kidneys happen to be working at the time.  Still, I can’t help but feel that, by hour two, it’s a huge waste of time.  If my gut weren’t such a volatile place, I’d totally be doing peritoneal dialysis AT HOME.  Thinking about how averse I am to “wasting” nine hours, I realize how worthless I am.  It’s not like I’m working a 60-hour work week on top of this.  I do absolutely nothing.  If I got paid to go to dialysis, that might help my sense of worth slightly.  How about it? ūüėČ  I read a quote by an alleged dialysis patient that said somethin’ like “we’re grateful for the things that keep us alive.”  I see this stuff – about people who are in the same position as me, but do they complain about it?  No.  They’re happy to be alive.  I really wish I could figure out the trick to that.  Maybe, just maybe, they aren’t being honest with themselves or their audience.

Since I’m a transplant puppet, I have to play their (the doctors) game exactly the way they want or it’s possible I’ll miss out on my “perfect” match (waiting for the right person to die doesn’t exactly brighten my day) due to being ineligible because I decided to skip tests that were ordered.  My cardiologist is extremely hyper.  Maybe that’s just him, or maybe he’s more accustomed to dealing with people who are forty years older than me.  That was made obvious during my time in ICU.  I had several cardiologists and none of them had any idea of what the fuck to do with me because drugs that they’d use on someone with typical heart failure made me crash.  On the flipside, heart crack to help increase my cardiac output made my arrhythmia worse.

Wednesday was my follow-up with Dr. Cardio.  I had lab work done first, then an echo and ekg.  I wasn’t feeling very chatty.  For him, I’m sure it felt like he was twisting my arm to get me to talk.  My Mom sat there patiently for about ten minutes before she chimed in and told him that I’ve been having trouble sleeping because I like to de-sat right after falling asleep, then wake up gasping for air and have had intermittent fevers over 101.  I’ve also got these things called splinter hemorrhages on my fingernails that, according to Laura, can indicate endocarditis or possibly vasculitis.  I’ve never had a doctor look at my nails.

I didn’t talk about any of it.  He’s the doctors, right?  He can figure this shit out, although this has rarely been the case with most of the others.  It hasn’t always been this way – I was pretty good about making sure I mentioned everything I thought was relevant.  I’m sure doctor burnout happens to everyone and in this case, it’s a very good thing I brought someone with me!

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There was no change on echo and I was sent back to the lab for blood cultures that required me to sit around for another hour and a half.  He scheduled me for a transesophageal echo.  Having a transducer smashed into your ribs isn’t uncomfortable enough.  How about we put it down your throat now?  Cool?  Cool.  This was to get a better view of my valves to make sure there weren’t any abnormalities.  He also offered to set me up with sleep medicine to help with my nocturnal dyspnea.  I’ve already got a sleep dude but getting in to see him can take a while.  It took three months to get my results after my last sleep study.  I don’t know if I can wait that long, so I asked Dr. Cardio to get in touch with him to see if I can get priority.  Fat chance, I’m sure.

I did ask him about starting PT because my gams are seriously atrophied, to which he replied “I don’t want you doing anything that isn’t absolutely necessary until this is under control.  That includes PT.  Pretend you’re 100 years old.”  Fuck.

My neuro appointment got pushed to next week so I could have the TEE done, which took about four hours to recover from sedation.  Just in time for dialysis.  The preliminary report was that everything looks okay other than regurgitation, no abscesses, calcifications or other weird shit.  My guess is the fever has something to do with my guts.  When isn’t that the case?  After two days, none of my cultures have started to grow.  I’ll take that as a win.

Next week will be even suckier than this week, with three follow-ups scheduled.  The things we do to survive and for what, exactly?  If I make it to the other side and have something that almost resembles health, I’ll still be a floater without direction or purpose.  I guess the trick is to not think about that (good luck) and focus on today.

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There’s something in my eye…

My Dad has been corresponding with a journalist at a political news organization regarding his time spent in Vietnam and his suspicion that agent orange caused my health issues, as well as my brother’s. ¬†He shared his story with them and was featured in their “Children of Agent Orange” series. ¬†A woman came to their house last week to photograph him and do an audio interview, then a slideshow video was created using the photos and audio clips. ¬†The series is a collaboration between ProPublica and the Virginian-Pilot. ¬†They’ve collected massive amounts of data from people like my Dad, and while not scientific, the information does raise questions that deserve to be answered.

The video and article links were emailed to my Dad when they went live and he demanded that Mom and I watch the video with him. ¬†He talked about my brother for all of 30 seconds, then rattles on about me for a bit and closes with “…I would like to see my daughter taken care of…she can’t fight for herself anymore.” ¬†And then, something ahem, falls into my eyes and they start to water. ¬†That’s some good production value. ¬†I assume people who don’t know us and watch his video, as well as all of the other videos that were published telling similar tales, would have the same reaction. ¬†Maybe not tears, but definite uneasiness.

I shared the links on my Facebook page and got a +1 from a classmate whose father served during Vietnam, and she has an autoimmune disease as well. ¬†The VA didn’t agree to give her father disability coverage for a very rare form of cancer that he was diagnosed with until shortly before he passed away. ¬†I vividly remember when her father died and how it stole the light from her eyes. ¬†I was a senior in high school and she was a junior.

In 2004, the government mandated that all active duty service members who deploy to foreign countries near a warzone must get a series of anthrax vaccinations. ¬†The initial formula given experimentally prior to 2004 had to be changed, as service members would become severely ill, some permanently. ¬†We’ve only got 35-40 years to go until we find out if there’s a link between MC’s aneurysm and the anthrax vaccination. ¬†What we do know, is that 2/3’s of people who receive them do get sick with severe flu-like symptoms, often for two or three months.

I’ve touched on the topic of agent orange a few times and I’m not quite sure where I stand, but it’s clear that if the government uses its people as guinea pigs without consent, there is a price to pay. ¬†I’m glad more people are speaking up about it. ¬†It’s difficult to ignore something that thousands of people are shouting from the rooftops (or from their keyboards).

Day 8: “Let’s talk about you”

I had a post-clusterfuck follow-up with my dear primary care doc.  This should have been a simple visit.  I want him to be on the lookout for referral requests in the future because I don’t know that my current referrals won’t expire by the time I have the opportunity to commit to a scheduled appointment.  Also, I need medication renewals put in despite having just picked up refills today.  They need to be there so the scripts can be transferred to a different pharmacy depending on where we end up at the end of next month (we’re still unsure if the military will keep him or kick him out).  Ooookay, so there’s a little background for you.

I assumed I’d only take up 5 minutes of his time, which left a whole 15 minutes that he could talk to manchild, as we both share the same pcm now.  I’ll be damned if Dr. Awesome didn’t scan over all of my records, test results, etc, and start digging into things that aren’t really current concerns.  Just weird lab values that have yet to be explained.  He wants to get it all figured out, and he’s going to lose his mind in the process.

I did bring up MC’s stuff because dude, pending heart explosion!  The exchange between the two of them lasted all of 120 seconds, and then I was back in the hot seat.  “This is your appointment, so let’s talk about you.”  Damn.  I don’t waaaaaaanna!

This doctor…he’s wonderful.  He’s the only one I feel I can actually talk to and be heard.  I’m calm around him because I don’t feel the necessity to be on defense.  The downside is that he has made it his mission to get to the “bottom” (current theory is my bowel issues started this whole mess) of what’s going on with me because I have multiple systems that seem to be failing.  What this means is lots of tests, which requires a willing patient.  I’m way past the point of caring about the ‘why’ and have moved into damage control mode.

I’m not doing well with any of my follow-ups because from where I sit, there’s not much of a point to any of it.  Outside of drugs, the only thing they (the evil collective of specialists) manage to do is piss me off.  I hate drugs.  Well, except for the ones that I don’t hate and bless those little white/round pills.  I don’t have the energy for pointless appointments and right now, I certainly don’t have the fucking time to deal with all of that nonsense.

Harpy is in hiding and FIL’s rear end is leaking toxic gas, so I’m chilling in my darkened space away from the open windows that are sucking in pollen and circulating the gas.  I wish I would have asked for a tranquilizer today.  In case of emergency, take one, close eyes, drift away to never-neverland.  The worst of it isn’t even here yet.

 

Footloose

Peripheral neuropathy is nasty. ¬†I’ve shown my feet off when they turn bright red and burn like hellfire, and I’ve probably complained too often about the spasms.

I’ve been having muscle spasms in my arms and legs for years. ¬†Since my electrolytes appeared normal, they wrote it off as something that fell under the broad category of malnutrition. ¬†Without testing a damn thing, I might add. ¬†What you don’t know can hurt you. ¬†Ahem, copper deficiency causes neuropathy, eh?

Some of my spasms are most certainly caused by iron deficiency/anemia, then there’s the subset of spasms that aren’t painful so much as just plain annoying. ¬†Before my extremities went numb, I was having myoclonic spasms in my legs. ¬†My muscles would contract, then relax without my say so. ¬†It was bizarre¬†and slightly disconcerting.

Then came the numbness and the foot spasms. ¬†It’s not like cramps because the muscles tense and relax, rather than tying themselves into knots, although they most certainly can progress to cramps alongside the spasms.

My toes twitch constantly (I wonder if they do it while I’m asleep? ¬†I wanna know!), and my ankle spasms cause my feet to get pulled inward. ¬†Most of the time, it looks like my feet are trying to fold themselves in half at the arch. ¬†On top of proprioception loss, this only adds to my balance problems.

I know numbness and burning are common problems with peripheral neuropathy, but I haven’t heard much about spasms. ¬†I just figured I’m weird. ¬†I guess twitches and spasms are a PN thing too. ¬†So here they are, for your viewing pleasure, the feet that just wanna dance!

And just for fun, llamas with hats.