Doctor Trump Supporter

When I had my measles/random rash scare, I mentioned that my GP doctor is a MDVIP doctor. This basically means that I pay a bunch of money to be treated like I’m his only patient, to get same-day appointments, and to feel like he remembers me when he sees me. It’s actually pretty great. I thought I’d give it a go when I read his positive patient reviews, as a physician, and the reviews of the MDVIP program, in general. I’d definitely continue with this type of doctor, as we move from the area. However, a sticky wicket as come up with my personal provider.

 

He’s a nice man, but he’s definitely a bit…conservative. He’s not conservative in treatment, although he is that, a bit, but it’s his political views that are the real problem. He tends to find a way to bring them up, at almost every appointment. Since even a quick pre-op clearance appointment can take upwards of ninety minutes, he has plenty of time to let his rebel flag fly. He always manages to slip it into conversation as if we are commiserating on the ways of the world like old buddies who have had this chat before, or who obviously agree that both what he has just said is true, and also that we also both agree that pineapple on pizza is disgusting. I think that because he knows Bryon and I are both military, he assumes that we simply must be of the same persuasion, as he opens all of our non-medical conversations with, “how’s the colonel?” (p.s. ugh and eye roll). You’d be surprised how many military folks are both liberal and atheists, by the way. Next time the chaplain does the “mandatory” prayer at an event, take a gander around at the non-head-bowers and share the head nod with the other non-prayers in the crowd, you’ll see.

 

Don’t get me wrong, I’m glad he’s so thorough, as a doctor, even though I have to clear half a day just to see him for a sore throat; but, I could live without him having the time to end up in a lecture about the potential danger of “illegals” killing us all at numbers we haven’t seen since the middle ages, thanks to unchecked entry with diseases like the Bubonic Plague. “Just you wait and see!” At least, that’s what the lecture was about this most recent time that I saw him. I’ve had lectures about everything from illegals, to voting, to speaking only English, and whatever other issue had Trump fired up that week.

 

These are always very awkward conversations, and they set my liberal, bleeding heart, a-flutter. I never know how to respond. Do I tell him that I disagree, and risk my doctor disliking me? Do I find a new doctor? Do I nod in silence and let him think I agree? Saying nothing makes me feel like I need a shower. It’s so confusing. There’s no one at the office to complain to, as his wife is his nurse, and the administrator is their dear friend. That’s it. That’s the staff. There’s no anonymity. When I call to make an appointment, they don’t just know me, they know me. This would generally be a great thing, but for something like this, it’s bad. How do you lodge a complaint about a doctor having somewhat inappropriate conversations with his patients, with the staff, when the staff is his family?  

 

Picture an oldish man. He looks a little like Santa, minus the beard, and a little more jowl-y instead of jolly. He’s a smidge imposing, and he’s got the upper hand in any interaction between us. He’s the one in control of my treatment and care, despite the fact that I’m the one who is supposed to feel in control, as the patient. The dynamic invariably shifts to the one with the most knowledge, and how he feels he will mete it out, in order to allow me to make decisions and draw conclusions. If he feels like I’m not capable of deciding the way of the world, perhaps he feels I won’t understand certain treatment options, or why he will make certain calls regarding my care. Perhaps, he won’t fully explain other options I might have considered, therefore not offering them to me as viable choices.

 

So, these conversations feel more threatening than they should be. This seems like a simple problem. I should just find a new doctor. Or, I should just live with this, and accept the imperfections of an imperfect man. However, neither solution is ideal. Finding a decent general practitioner who takes extended time with my complex conditions, and who has extensive relationships with referring local doctors is difficult. But, accepting, and furthermore, knowing I’m lining the pockets of someone whose views I find abhorrent, is also difficult for me, on a moral level. Ugh.

 

At our last appointment, I needed a Tdap booster, apparently. I mentioned the case of the child in Oregon, who contracted tetanus recently, to the tune of nearly a million dollars in related medical costs, and whose parents still refused the vaccine, despite seeing how ill their kid was. This brought up the aforementioned rant about how “illegals” are bringing in all kinds of diseases, and how the liberal media won’t tell you that they are going to kill us all. He told me that it’s black and white: one side wants more voters and the other side (I assume he meant the “illegals”) wants to come and work for free and get free benefits. I say that assume there, because what “side?” wants that?

 

I didn’t bother to tell him that what he said made no sense for his argument against immigration, because he described two sides of the same racist coin, in his hurry to slur the facts. But, that was neither here nor there. He’s so brainwashed by Fox that I just murmured that I didn’t think it was that simple. That’s all I could get out in defense of helpless humans being belittled in a doctor’s office hundreds of miles away, grouped into swaths of humanity that don’t even register as individuals anymore.

 

There was so much I could’ve said, so many points to bring up. Children being abused in detention facilities, deaths, rapes, families being separated. There are so many successful immigrants that I know, dreamers that have succeeded. There are so many reasons to love immigration and to support the idea that people should come here and have a chance. The dream of America is built on it. But, I didn’t say any of what I believe. And, mostly what I believe is that kindness and human decency should always trump anything else, and that we are treating our fellow man like they are subhuman, which is disgusting and makes me feel sick at night. We’re not only being un-American, we are being bad humans by doing so.

 

One might say that it doesn’t matter who your doctor is as a person, so long as he’s a good doctor. That may well be true. He could be a terrible man, but still be a great doctor. However, when that terrible man brings his terribleness to the job, and forces me to look at it, I have to assess how important that is to how he treats me, as a patient. If he’d left that part of him, at the door, before he came into the exam room, then I wouldn’t be forced to evaluate it as part of his medical persona. But, because he brings it into the room with him, every time we have an interaction, I have to ask myself how kind of a man he is, how sympathetic, how gentle, and how understanding. I have to ask myself if he’s the right doctor for me, overall.

 

Worst of all, when faced directly with this attitude by a man who looks a little like a kindly grandpa, and who is in a position of power, I did nothing. I said nothing. And, I’m ashamed. I’ve started looking at how I can transition to a provider in the same system that maintains all the same records, but is still part of the same provider network. My current doctor is less than a mile from my house, and any new one would be at least a fifteen to twenty-minute drive, but I suppose that’s the price I pay for a cleaner conscience, and for a doctor who can be more professional. I’m hoping it’s a possibility. Starting over with a new doctor is never fun, but in this case, I think it’s important that I at least try. At least I’ll know that I’m not supporting his practice any longer, anyway.

 

The Only Thing Necessary for the Triumph of Evil is that Good Men Do Nothing

 

 

 

Happy Zipperversary Times Two

Most Chiarians who have had decompression celebrate what they call their zipperversary. This is the anniversary of their brain surgery, a momentous occasion, because it undoubtedly changed their life, for better or worse. Either way, it gives you a battle scar, and a badge of honor. Surviving brain surgery is no joke.

 

For me, I’ve got two zipperversaries. One in May 2015, and one in June 2016. So, celebrating them both, roughly mid-point seems good enough. Either way, it’s been 4 years, and three years, respectively, since someone’s poked my brain, removed bits of my skull and spine, and in one case, drilled some titanium into my head. It sounds so…horrible.

 

I still can’t look at images of patients in position for my surgeries, because it sends me into cold sweats, or straight panic attacks. Chiari surgery is performed with the patient face down, bolted to the table. BOLTED to the damn table. Just that thought makes me shiver. I was BOLTED to a table. My body, my head, was bolted to a table. I know this, because I had bolt scabs for days, both times, when I woke up. I touched them obsessively. For some reason, this little item always skeeved me out the most, knowing that I was treated like a piece of wood you needed to keep still, in a vice.  

 

The second surgery saved my life. If I’m honest, I’d probably have eventually killed myself. Living in the state of pain I’d been left in, and in the state of rapid deterioration, I’m not sure how long I could’ve held out. If not that, I’m not sure how long the rest of my body could’ve held out. I was already on massive amounts of pain killers, just to survive, and my brain was mush. People underestimate what happens to your brain when you are on doses that high. You lose yourself. You become depressed, stop making rational decisions, and you forget time, space, and all sense of logic. Who can last forever like that? I was being treated as if I were a cancer patient, in her last days. There are months of that period that I have no memory of.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

There was once a time that my jaw was so painful, on a regular basis, because of referred pain from my skull, that I would use ANYTHING handy, to put pressure on it, including the pain pill bottle that I was never far from…as I counted the minutes till I could have my next dose, desperate for relief.

Celebrating these milestones is a strange thing. It’s double-edged. You recall that you survived and endured, and you remember that you overcame; yet, you also sit and remember that it means you are sick, and you were once sicker. It’s a weird dissonance. Recalling getting out of my hospital bed at Walter Reed in 2015, being forced to walk, to prove to the nurses that I didn’t have spinal damage, was terrifying. The fear that I might not be able to, is a memory that is part of my very core, because it wasn’t a “maybe,” it was a realistic possibility. The uncertainty of what was broken, what was going to heal, and what wasn’t, was very scary.

 

Now though, I know the extent of my “damage.” I’m healed, as healed as I’ll ever be, really. In fact, my UCLA neurosurgeons just reviewed my latest MRIs and reassured me that I wasn’t having new Chiari symptoms and headaches, and that my plate still looks great. My new headaches are because my neck, having been diced in half twice, is fucked up. It will only continue to get worse, over time. This happens with a spine that is weakened by surgery, and with muscles that have been hacked apart. But, I can feel “safe,” that it’s not my skull or brain. Phew. The point is that I will periodically fall apart, here or there, but I will likely be “fine,” from here on out…. probably. That’s what my annual MRIs are for.

 

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

Hello C-Collar my old friend. I hate to see you again. Truth be told, I need you more often than I let on. If I wore you more often, I’d have less pain. But, I hate you so much that I let you gather dust in the closet. You are uncomfortable. You are hot. You make it hard to see stuff because I have to turn my whole body. And, you are a flashing light for people to stare at you, in public. In short, I hate you and you are evil.

So, I celebrate. I remember. I monitor. I remain vigilant. I remember that I’m the healthiest version of a sick person that I can be. I solider on.

 

This year, to mark the occasion, I go under the knife again with another major surgery. This time, I am having my Fulkerson Osteotomy on June 17th. It’s a ridiculous procedure that I think was invented in the middle ages, and hasn’t been modified since. It involves breaking my leg, installing some bolts, fully flipping my knee cap, and moving all my ligaments. As a bonus for all this torture, I get an entire new sheet (is that what it’s called?) of cartilage under my knee cap, grown and cloned from my very own cells.

 

It should take a full year to heal, so I’m super stoked for this. Supposedly, this was preferable to a knee replacement. I am trusting my doctor who basically told me that my knee was a disaster and he wasn’t sure how I was walking. Since it currently dislocates roughly 4-5 times a week, I’m ready for either this surgery, or an amputation.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

I used to spend A LOT more time horizontal. The only thing I miss about this is that my kitties and I used to snuggle pretty close during these times. Poor Little Willow was a pretty good snuggler.

 The cool part, at least I think so, is that I’m like a celebrity at my local Physical Therapist’s office, because although I go there for shoulder work right now (remember that surgery too – I’m a disaster), they all know the Fulkerson is coming. It’s a relatively rare procedure, both because most people’s knees aren’t fucked up enough to need it, and because when they are, many people choose to live with the pain, rather than face the terrifying operation. However, the PT is kind of specialized, so they are really excited about it. Plus, they are crazy excited to see how the cloned cartilage works out, because this part is even more rare.

 

This must be what it feels like to be popular. It’s the same feeling I get when I go to my tailor and she compliments both my clothes and me, every time. She always tells me that I look pretty. Honestly, I pay a little more (I think) to go to her, just because she compliments me. I’m such a sucker for positive attention. Praise me! Someone once asked me why I enjoy education and school so much, and I said, “because that’s the place where you get A’s.” I thought it was a stupid question. I think this sums me up, in a nutshell.

 

Anyway, it’s awesome to look back and remember that I was once sicker. I once thought I wouldn’t make it until the morning, leaning over and begging Bryon to tell Collin I loved him. I once thought I might not be able to read for comprehension again. I once thought I’d have to use my cane, forever. I once thought that I wouldn’t survive surgery. I once thought I’d be on Fentanyl until I died…then, I thought Fentanyl withdrawal would kill me (don’t start Fentanyl, kids). But, it all gets better, at least a little. Look at me now, starting Harvard in less than a month!

 

I’m still slower than I used to be. I’m still racking up surgeries like I’m collecting hospital bands, or cats (which I am). I’m still in therapy for PTSD, depression and anxiety. I still have memory issues and pain problems. I still have days where my body forces me to just…. sit. I still have more health problems than anyone would care to listen to, and I would care to list. But, I get up, every day, and try. I’m alive to do it. That’s what a zipperversary is really all about, that you lived to fight another day.

 

So, if I’ve got any fellow Chiarians reading this, keep trying. Keep fighting. It isn’t sunshine and rainbows with unicorns farting glitter, on the other side. It’s going to suck, some days. Some days it’s going to be terrible. But, the days that it isn’t, it’s pretty great. Hang in there. It can be maddening to read stories of post-op patients who run marathons after they heal, or who climb Mt Kilimanjaro, or become astrophysicists; but they are freaks of nature, or liars. Do you. Your Mt Kilimanjaro might just be to get dressed today, and that’s just fine!

Measles...Or Not

Speaking of hypochondria…


You know how it seems like we are living like pioneers in 1857, thanks to the measles outbreak(s) brought on by kooky anti-vaxxers and their fear of survival? According to the CDC, there have already been 764 reported cases of measles this year. This is more than double last year’s total cases, and more than six times the cases in 2017. This year, there have been public health notices regarding measles outbreaks in Los Angeles County, Brooklyn, Washington, New York City, Texas, Illinois, and Rockland County (New York).


I am immunized because I got all my shots as a kid, and because I was in the military. When you in-process, you line up with all your fellow new airmen and wait for a slightly senior-to-you airman to push up your sleeve up and give you approximately 97 shots at once, regardless of your vaccination history. Your arm hurts for, what seems like, weeks, probably because you are concurrently doing endless push-ups and pull-ups on those same arms. I’m pretty sure it’s just the tetanus shot that hurts, but it seems like they all hurt.

 

These new measles cases mean that adults are panicking about their decades-old shots and whether or not they need to be covered with new boosters. If you were born after 1989, you probably had two doses of the measles vaccine, which is approximately 97% effective at preventing measles, versus the single dose MMR (measles, mumps and rubella) vaccine used as far back as the 50s, which was still very effective (93%), but slightly less so. The only way for adults to tell, at this point, whether or not they fall into that “almost” covered, or not covered at all between 93%, 97% or 0%, is to get their titers checked. This is as simple as getting their blood drawn to find out if they have any antibodies that say, “yep, I’m protected from the measles.”

 

All of this measles talk has a purpose, I promise.

 

I was born before 1989, and I was in the military. So, logically, I’m covered for the measles, right? Duh. I have had my measles vaccines. In fact, I have been vaccinated twice over, by anyone’s standards. According to the anti-vaxx crowd, I should either be dead, have super-autism, or be glowing with toxic radiation. That’s how it works, right? Either way, I have no reason to assume I have the measles.  

 

Still, when I got a weird rash on my face last week, that’s precisely what I did. To be fair, I didn’t assume measles…at first. I waited several days before I freaked out. And, I kept the freak out factor very minimum. In fact, I tried to go to my primary care doctor, super casual-like. “Hey man, I’ve got this rash, can I come in? Super chill. No big deal. In fact, let’s forget the rash, let’s just get some burgers and milkshakes. I’m cool, I’m casual. I’m breezy.”


I only showed up at Urgent Care because he’s at a conference at Johns Hopkins, for the next THREE FREAKING WEEKS, and I had no choice. He’s still out of the office, actually.

 

I was, frankly, pretty annoyed at him. Not sure if you’ve heard of this new MDVIP thing; but, it’s basically concierge medical care. A lot of doctors cut their patient load down to a few hundred (or fewer) patients, which is great for you, as a patient; however, you pay a yearly fee to enroll in the practice. It works out for the doctor, too, as they work with less insurance red-tape, make a higher profit (the high enrollment fee is cash only), plus they get to practice medicine the way they want to. It makes for pretty personalized care, and a wonderful patient experience. It’s not cheap go to a MDVIP provider, and he was gone for THREE WEEKS, during a “measles” crisis on my face.

 

I digress. I suppose I can forgive him. He’s been there for me at minutes’ notice when I’ve had the flu, a UTI, and a kidney stone, in the past, so fake measles can be forgiven…this time! He’s a great doctor, and always thorough. He’s often too thorough. You can never get out of there in less than thirty to forty minutes, even for a “quick” appointment, and not for waiting, for the appointment.

 

Anyway, back to this rash on my face. It was weird, red splotchy spots that had popped up out of nowhere all over my face, primarily on my right cheek. I’d not had contact with anything new, not eaten anything new, not worn anything new, not used a new soap, nothing. They kind of itched, but not really. They felt raw when I touched them. They were spreading, and they were ugly. The ugliness was my primary concern, of course.

It’s almost embarrassing to show you all this picture because it barely shows the rash, here. But, this is the" “best” picture I have of it. Half of my face is covered by sunglasses, and half of my spots aren’t visible. Overall, it’s a pretty dumb shot to “show off” a rash. But, here it is. And, it’s a HIDEOUS picture of me. It’s probably not the ugliest picture I’ve ever posted here, but it’s still not great! But, you get the idea of what some of the spots looked like.

It’s almost embarrassing to show you all this picture because it barely shows the rash, here. But, this is the" “best” picture I have of it. Half of my face is covered by sunglasses, and half of my spots aren’t visible. Overall, it’s a pretty dumb shot to “show off” a rash. But, here it is. And, it’s a HIDEOUS picture of me. It’s probably not the ugliest picture I’ve ever posted here, but it’s still not great! But, you get the idea of what some of the spots looked like.

 

 At first, I thought they were pimples and that I was having a hideously bad acne breakout. Because I am blessed with normally clear skin, with the exception of pimples that come in singles here or there, I was pretty annoyed to have a baker’s dozen arrive on my face all at once. Still, I slept with those awesome pimple patches on all of the spots, thinking I’d wake up with lots of goopy stickers to peel off in the morning. Nope. All the stickers came off clean, and the spots were just as red and hideous. So, I was annoyed that I’d wasted a ton of those stickers. Plus, there were even more red spots. Hmmm….and grrrrr.

 

In the back of my mind, I thought they looked measle-y, but I knew it couldn’t be, because I’d had my vaccines; however, measles starts on the face as flat, red spots. Check. Logic be damned when you’re a hypochondriac. I posted my rash, now several days old, on FB and one of my friends immediately said measles. Really, I just wanted someone to say, “poison ivy,” or, “leprosy.” Really, anything other than confirming what I was already thinking.

 

This was moments before I went in to a physical therapy appointment for my ridiculous shoulder that is still bothering me. My physical therapist, of course noticed my rashy face. There’s nothing like brining a potentially contagious rash into a medical building where they treat dozens of patients, many of them elderly, a day. You feel like a criminal. Only instead of assaulting the elderly directly, I was potentially leaving behind a microbe to do my dirty work. When she asked what it was, I was forced to tell her I didn’t know. But, of course, she said it looked a little like measles. I explained it couldn’t be, that I was vaccinated, which made her more comfortable, and that I was going to get it checked anyway, which put her even more at ease.

 

So, I went to urgent care….

 

This is how check in went:

 

I’m perfectly healthy, energetic and happy, as I approach the counter. I tell the check-in woman that I’m probably fine, but if I’m not, perhaps I should sit somewhere away from others because I’m concerned the rash on my face is measles. The woman behind the desk looks up at me, looks at my face, smiles at me, and tells me to take a seat. She removes the pen that I used to sign in with from the cup on the counter, throws it away, and then sanitizes her hands, wipes the counter with bleach and wipes her keyboard. Yep. I feel great, so far. The waiting room is empty, except for a single person, so I sit all the way on the other side of the room.

 

Moments later, a nurse comes out to get me, wearing a face mask and gloves. She was excessively kind and apologetic for being so overly cautious, and said that she hoped I understood the precautions. Of course, I did! She got me to a room, checked me in and took a look at my face. From her assessment, she said it was hard to tell, but it looked like…hmmm…maybe? In other words, she didn’t know. So, she obviously wanted to wait for the doctor. What she did want me to know was that she was so happy that I came to the clinic and that she wished more people came to check on rashes they didn’t know about because it would help stop spread these outbreaks. This left me wondering what other rashes cause outbreaks, other than measles? Meanwhile, I was apologizing profusely for wasting everyone’s time and for being so ridiculous for coming in, in the first place. All I could think of, was becoming patient zero in Northing Virginia.

 

Next, a PA comes in, introduces herself, gloves up, and puts a mask on. She also apologizes for the precaution and congratulates me on potentially stopping a measles outbreak in its tracks. I am starting to feel like a god damn hero for visiting Urgent Care, instead of like a weirdo with a face rash. She spends about five minutes examining my face, which, trust me, is a long time to have someone centimeters from you face, poking it, shining a light on it, and staring directly at each spot. The end result of her exam was that she just…wasn’t…sure. She thinks that it’s probably not, but she doesn’t want to make the final ruling without a doctor to sign off on it. Just in case.

 

By the way, there’s nothing like a woman with a light squinting right at your face, quizzically saying, “Gosh, I just don’t know…what IS that?” while poking your cheek, as if she’s poking at a piece of rotten meat. It makes you feel just, I don’t know, pretty? Is pretty the right word? Gorgeous?

 

So, that’s two people who are maybe thinking it’s not measles, but they can’t 100% be sure that it’s not, so they need a third party to rule it out for certain. So, now I’m wondering, if it’s not measles, what the hell kind of rash do I have? What did I get into that’s so insanely unique that no one can even identify it?

 

The doctor comes in, this time not covered, not masked, and not gloved. He was also very nice, and congratulated me on being responsible enough to take seriously how contagious I might be to others. I was wondering if, at some point, the entire clinic might be secretly planning a party, or perhaps a parade for me? It really made me feel much better about going in for something so silly, to have everyone be so nice to me. Anyway, he examined me pretty closely as well, and determined it was “just a rash.”

 

His assessment was that it’s basically a “who the hell knows?” kind of thing. He didn’t say that, but that’s my description. I could’ve come in contact with anything, at any time, and been allergic to it. Even with steroids and steroid cream, it still took another week for it to clear up, so whatever it was, I was obviously having quite a reaction to it! He said it definitely looked very similar measles, so there was certainly a reason to feel a little concerned. However, measles tends to start more towards the hairline, and not the cheeks. The more you know, I suppose!

 

He said it might’ve been poison oak or poison ivy. It made me remember that I had, indeed, been rubbing my face in the lawn when I was gardening a few days prior. I was weeding our raised veggie and flower beds, and to take a break, I put my face all over the grass. No wait, dogs do that. So, no, I have no idea what caused the rash. It was just there. And now, it’s gone. And, it wasn’t measles. Of course.

 

So, my hypochondria sent me to urgent care for a disease that deep down I knew I didn’t have, which I was later told I didn’t have. And, all ended well. OH! I forgot the part which Bryon even agreed that it was a good idea to get checked. He was a hypochondria supporter, at least in this case. He, like me, said, “you probably don’t have it, but yeah, get checked. Not a bad idea.” Meanwhile, he was at home, texting me what he was Googling, which was that I didn’t have a fever, and all the CDC reported cases by state. He didn’t feel 100% sure that I was “safe” until he saw that there were no reported cases in Virginia yet, this year. I always know when Bryon is worried, even 1% worried, by his texts, or what he Googles or looks up. He was just a smidge concerned, just like me. A smidge counts. Hope my hypochondria isn’t rubbing off on him!

Medical Diagnosis: The Odyssey

My body is weird. I don’t say that in a “I hate my body” kind of way. Don’t get me wrong, I hate my body in all kinds of womanly ways. I hate when I get constipated and my stretchy baby bucket allows my woman pooch to fill up and look like I have a poop baby, gestating to about six months, instead of just a little bloat. I hate that I my boobs are too small, and I hate that I still get acne breakouts. I hate that I have enough cellulite, that a few months ago, Collin, who still follows me to the bathroom asked me, “Mommy, why is your butt skin bumpy and mine isn’t.”

 

But, that isn’t what I mean. I mean that my body behaves weirdly, which makes medical diagnoses difficult, time consuming, and frustrating. There’s a theory, in the medical community, that when you hear hoofbeats, think horses, not zebras. For me, it’s always the zebra, or maybe an emu, or even an ostrich who identifies as a horse, wearing horseshoes.

I don’t have any pictures of horses, ostriches or zebras, but we call Loki, Bear. So, here’s a picture of a Bear.

I don’t have any pictures of horses, ostriches or zebras, but we call Loki, Bear. So, here’s a picture of a Bear.

 

On television, we see doctors like Dr. House, who get a mysterious patient, hone in, and refuse to let go, until they reach a solution. In reality, someone like me, who presents with a wild array of insane symptoms, even one with an already bizarre diagnosis, which may complement the bizarre array of symptoms, and even be a part of the list itself, is shuffled around to an ever-growing list of specialists to find not one diagnosis to tie them together, but a laundry list of them.

 

It’s a game of hand-off, pass the patient. It makes the patient (me) start to wonder if they are crazy. Am I sick? Is there actually anything wrong with me? Maybe this is all in my head? If Doctor A couldn’t figure it out, maybe it’s because there’s nothing there, and I’m actually fine. Am I just a hypochondriac?

 

Then, I remember that Doctor A did find something. He found lots of things; he just isn’t the right doctor to deal with the stuff he found. Medicine, these days, is so compartmentalized and specialized. It’s out of his area of expertise, and the stuff he found was scary. It was so scary, he was worried and insisted I see Doctor B. But, the tests Doctor B ran, ones he was sure would present a positive diagnosis, didn’t; but, they turned up something out of his area of expertise, and now I have to go to Doctor C. And on and on it goes. Now, I am all the way to Doctor Q, and I am tired.

 

Side Note: is Doctor Q a cool villain name, or what?

 

Eventually, I question if I am a not only a hypochondriac, but if I am such a hypochondriac, that I am being a hypochondriac about being a hypochondriac. How meta is that? I am constantly asking doctors if all this is necessary. I am constantly pressing them whether this is crazy; couldn’t I just be fine?

 

Can you imagine being my therapist? She’s paid well.

 

In the past eighteen months, here’s just a sampling my saga:

 

Cardiology

I pass out sometimes, for no reason. I just, poof, go down. Imagine lying on the couch with your head hanging over the side, then quickly standing. For me, just sitting normally gives me that feeling when I stand. I also pass out if I’ve had a bad headache. I’ve never worried about it. I always wake up, right?

 

My primary care physician felt otherwise, at my annual physical, when she took my blood pressure, and it presented as approximately low enough to be dead. Meh, it’s always low. I wasn’t concerned. So, I mentioned the “spells.” She made me do the sitting, standing, lying down blood pressure tests, and they changed dramatically, so she shuffled me off to cardiology for several other tests.

 

All signs pointed to a POTS (Postural Orthostatic Tachycardia) diagnosis, not uncommonly comorbid with Chiari.

 

Then, I had a tilt table test, which is the gold standard for diagnosing POTS. They strap you to a mechanized table, that tilts up and down, to see how long it takes to make you pass out. Only medical test I know of that’s basically an amusement park ride. Because they used this table so rarely, at the hospital I went to, the table barely worked; so, I passed (not out) with flying colors. Instead of it “tilting,” to any degree of speed, it moved at the rate of a 103-year-old woman standing up and down.

 

This left the cardiologist scratching her head, and she basically said, “whelp, for all intents and purposes, I’d have diagnosed you with POTS except for the tilt table test.” In other words: Dunno? Looks like a duck, quacks like a duck; but seems like it might be a whale? So, POTS-ish?

 

Hepatology

Did you know that a hepatologist is a liver, gall bladder and pancreas doctor? I do. I know this because I have a hepatologist. I also know my liver’s soft/hard value, because it’s been tested. This is bizarre and seems like something that a chronic drinker should know. I’ve had approximately three glasses of champagne in my entire life.

 

For as long as I can remember, doctors and nurses have said, in passing, after blood draws, “oh, your liver number is elevated,” or, “hmmm, everything looks great, but your alk phos (as if I know what that is) is a little off, probably nothing.” Again, my primary care physician, being ever diligent, noticed a pattern in those pesky numbers. Turns out they are always off. Turns out my liver is a weird-o. Turns out whatever day the random doctor noticed the numbers wasn’t a fluke; it’s consistent.

 

What no one knows is why it’s off, or what to do about it. Liver issues are noted with alcohol, or with obesity. They aren’t noted in thin, vegans who don’t drink. There are a few autoimmune diseases that cause liver disease; I tested negative for all of them. So, I have idiopathic fatty liver; but he isn’t sure I even have fatty liver. At this point, he is just guessing.

 

But, the values of my labs are so off, I have to continuously provide blood to monitor them. The good thing is it’s being watched. The bad thing is that I feel like a time bomb, waiting for my liver to randomly need a replacement. I know it doesn’t really work that way, but it feels that way. Mostly, I think it feels that way because my doctor is in the Georgetown Liver Transplant Center, and his waiting room plays, on a loop, a video about liver transplants. It’s unnerving.

 

Thanks, vital organ, for being weird and janky.

Doctors, doctors, doctors! I think this must’ve been my orthopedist’s office that I felt the need to photograph and save for posterity. Flattering, no? Nothing says sexy like paper shorts and crew socks. They really shorten the leg and make you look like a troll. On a positive note, I’ve not shaved my legs in over a year! Look at that!! You can’t even tell. I have been blessed in very small ways.

Doctors, doctors, doctors! I think this must’ve been my orthopedist’s office that I felt the need to photograph and save for posterity. Flattering, no? Nothing says sexy like paper shorts and crew socks. They really shorten the leg and make you look like a troll. On a positive note, I’ve not shaved my legs in over a year! Look at that!! You can’t even tell. I have been blessed in very small ways.

 

Rheumatology

I did NOT want to go to rheumatology. I felt like it would be a rabbit hole. My pain doctor in California begged me to go for the three years, insisting that my joint deterioration, swelling, and even some of my other body symptoms were all connected. He was sure I was suffering from an autoimmune disease, and that I could be so easily helped, if only I could get a diagnosis that would tie everything together. After a particularly rough week of exhaustion so bad that I could barely move, I thought that surely no normal person is ever this tired, I finally made an appointment.

 

I have been tested for everything under the sun; but, my doctor was almost positive that I have Sjogren’s. It fit with all my symptoms. I am practically the poster child for it. For once, at my next dentist appointment, I’d have no shame about the inevitable new cavities. I would be able tell him that I have Sjogren’s and no matter how much I brush, floss and rinse, it’s almost impossible to battle the crippling dry mouth. I have virtually no saliva, cavities are going to grow. Not that Sjogren’s is just about dry mouth, but since it’s one of the things that’s most annoying, it came to mind.

 

I did find a solution that I particularly like for dry mouth though. If anyone out there has dry mouth from Sjogren’s, or from any meds that you are on, try these! I can’t find them in a store anywhere, you have to order them directly from the company’s web site. My dentist recommended them; they are amazing. It’s not too much to say that they have, literally, changed my life. Better than any rinse, strip, toothpaste, or anything out there. Best thing I’ve ever tried for dry mouth!

 

Alas, Sjogren’s doesn’t have a single test. It’s a diagnosis based on patient history and a few other tests that “help” make a diagnosis. I was negative for the ones that “help.” The test they consider the “gold standard,” is a lip biopsy. We all know how fun that was, based on my last post. I forgot to mention that I was so nervous to get the damn thing done that Bryon came with me, and was leaning over the chair hugging me when the doctor came in to start. The hug looked so awkward based on the chair’s position, that it looked like we were in a rather “delicate” position. The doctor and nurse, literally excused themselves as if we should have our privacy! So embarrassing! When we told Collin the story, he said,

 

“The doctor thought you were humping!”

 

My son, ladies and gentlemen.

 

He’s cute though, right? No, this wasn’t taken at Christmastime. He just wears his holiday pajamas all the time. Who wouldn’t? They are awesome!

He’s cute though, right? No, this wasn’t taken at Christmastime. He just wears his holiday pajamas all the time. Who wouldn’t? They are awesome!

My appointment to go over this negative result is in a few weeks; but, I expect the same type of conversation that we’ve already been having, an echo chamber of what I hear from my other doctors, really: there’s a ton of stuff we are finding in your imaging, tests, and in your blood, but it’s not matching with the predictions we’re making….you have something, I just don’t know what.

 

It’s so unhelpful and makes me so confused and frustrated. It’s always the same story: I have all the symptoms, I have almost all the positive test results, and then poof, I’m negative for something, and it’s very confusing to everyone. But then, alas, I’m positive for something else.

 

Today, I am declaring myself my own disease. I have Rachel. Since Rachel is incurable, there’s no point looking for that. Not to fear, it’s not lethal. However, symptoms are alleviated by her wonderful family (duh), presents purchased from Anthropolgie, Jonny Was, Frye, and especially from Tiffany’s. Symptoms are also reduced by spending time in California with loved ones, and by jolly kittens. They have to be jolly, otherwise the whole thing’s off. Other salves are relaxation with good books, painting, and creativity. Exacerbation of symptoms can be caused by traffic, people who don’t turn their phone volume down in waiting rooms, and anyone who won’t shut up about Game of Thrones.

 

I know that Homer doesn’t look “jolly” here, but he was sound asleep, so he let me tuck a little blanket around him; and he looked so darn precious! I’ve said before that I embrace my crazy cat lady. I feel no shame.

I know that Homer doesn’t look “jolly” here, but he was sound asleep, so he let me tuck a little blanket around him; and he looked so darn precious! I’ve said before that I embrace my crazy cat lady. I feel no shame.

FabFitFun...FabFitFlop?

With lots of free time to flit around the web, comes lots of free time to see celebs and plain folk, like bloggers shill for paid posts for all kinds of things like cleanses and subscription boxes. There’s a subscription box for just about anything you want these days, from socks to science kits. I get a box for cat ladies. No, I’m not kidding. And yes, it’s awesome. Once a month, I’m delighted with a box full of trinkets, reminding me how fun it is to love kitties. It’s all basically garbage; but there’s almost always a shirt to add to the gym or pajama pile. And occasionally, there’s something worthwhile. Last time, there were adorable kitchen towels. Plus, the cats love the toys they get each month.

 

As anyone who knows me can attest, I’m a bit of a shop-a-holic. I call the UPS/Fed-Ex man the “present man,” because I tend to buy enough stuff that he comes bearing gifts that I’ve purchased for myself, sometimes that I’ve forgotten about. I need these presents to survive. I used to think I didn’t. But, I’ve come to accept it as part of my mental makeup. Some people need a walk outdoors, some need a chat with a friend, I need a new dress to recharge my batteries. We even have my shopping habits worked into our household budget. I cannot survive without…well…buying crap. It’s part of my makeup. One has to know oneself, right?

 

But, I truly have everything that I could need. In fact, I have everything that ten people could truly need. So, I thought that I might try one of these subscription box services that delivers a wider variety of products. I thought it might counter some of the shopping, if a bunch of stuff came to the door, unannounced. Overall, it’s cheaper than shopping, and it’s less effort. See, good thinking, right? I would be in anticipation of the present man, because he’d be bringing me an assortment of goodies; so, I don’t need to buy anything. Such a good thinker, I am!

 

So, I subscribed to FabFitFun. I had heard of it through copious advertising and seen so many bloggers do the unboxing videos. Oh, how excited they were to pull out their items and dangle them in front of the camera! Alas, full-sized products! Beauty products! Clothing! Such a combination! Seemed like a good idea.  

 

The first thing that happened when I subscribed was that I had to answer about forty million questions about my size, preferences, and likes, to sign up. That seemed okay, as I assumed they wanted to make sure that I would get appropriate products. The only problem with this process was that it took at least twenty minutes to set up my account. It was very time-consuming. I wish I had known it was going to take that long before I committed to the sign-up. It isn’t that I was busy, it’s just that I did it on a whim, and I wasn’t prepared for the time commitment. So, I got a little annoyed. This should serve as a little warning to anyone who is thinking of it: be prepared to really sit down and get into it, it’ll take a while.

 

Then…the emails started. I get no less than three to five emails a day from FabFitFun. This makes it very easy to ignore the emails that are “important,” meaning the one that allows you to log into your account and select changes to your box before it ships. You are allowed to make specific changes to your box, where applicable, which I almost missed, because the email was buried amongst the dozens and dozens of useless messages. This time, a selection, for example, allowed me to choose the color of the blanket they sent. You are also allowed to “upgrade” your box within certain time limits, and those messages can get lost amongst the rubble as well.

 

The biggest disappointment though was with customer service. I got my first box relatively slowly. My assumption is that it got delayed somewhere along the way, not really because of their shipping, but because of the postal service, based on the damage it incurred. Still, I don’t know, not for sure. All I know is that I’d seen several online posts of people talking about their “winter box,” and lots of people with unboxing videos days, even weeks, before I got my box. Finally, when my box arrived, it was very damaged. The whole side was crushed, and all the contents on that side were crushed. It was awful.

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I logged into the website to figure out how to contact customer service and talked to a representative. They offered me a measly $15 credit for my next box. Considering how much damage there was, I was pretty disappointed. I’m not really an idiot, at least I don’t think I am, so I wasn’t all that keen to take the offer. I get that the box is full of products that are retailing for approx. $45, but when you offer them for $10 on your next box, they aren’t really $45 products, are they? So, giving me a $15 credit, isn’t offering me much of anything, is it?

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You are basically giving me nothing. In other words, I paid full price for a box of crushed goods. This makes me feel unsatisfied and frustrated. If I went to a store, I wouldn’t pay full price for these items, so why should I pay full price for them to be delivered to my house?

IMG_4080 2.JPG

 

I was instructed to open all the crushed boxes. All of the merchandise was fine, inside, except for one item that was destroyed. They offered to replace the destroyed item, and still give the $15 credit for the following month, which would allow me to “shop” for add-ons for my next box. The add-ons are items left in stock from previous boxes at discounted rates. This is still a terrible deal, in my opinion. It made me feel like I was given factory seconds at full price, but I wasn’t really left any other options.

IMG_4083 2.JPG

 

The contents of the box are neither over, nor underwhelming. I’m happy with the blanket, and the conditioning mask is one I’ve bought for myself in the past. I’d wear the necklace they sent, but not necessarily have bought it for myself, if I’d seen it in the store; but only because I don’t really buy cheap-end jewelry. So, between products and customer service I’m left with a meh feeling, overall. Because I’ve heard that cancelling the subscription is equivalent to trying to get out of a cult, I decided to simply stay subscribed and to give it another go-round. We’ll see what the next box brings. The spring box may be filled with goodies that are incomparable. Who knows?

I do know this: they best not mess up the next box, as sick people have lots of time on their hands to complain and annoy customer service people into cancelling their accounts. So, FabFitFun, I’m watching you. I did my due diligence and looked into your customer service after this, and noticed that you have some issues. Eyes on you, now.

Every End is a New Beginning: Goodbye to Teaching

Despite having my head drilled into a couple of times, and my neck muscles pulled apart like the living room drapes, I’ve been very lucky, as far as Chiari goes. I don’t have a syrinx, which hasn’t limited my mobility. My spinal damage is limited to what amounts to pretty significant arthritis, which will certainly get worse as I get older; but, I’m not going to count those horrifying mutant chickens before they are hatched. Overall, it could be much worse, and I’m grateful that it isn’t. That doesn’t mean that I haven’t had to make some serious life-changes to accommodate where Chiari fits; and that I continue to have to do so.

 

When we moved back to Virginia, Bryon, with his pesky belief in me, was excited because he was convinced that I would be strong enough to get back in the classroom to teach, instead of just working online. So, I agreed to take on two in-person classes, one of which was a class that met only on Saturdays. It was a hybrid class, in which the bulk of the work was delivered online, but we met for almost three hours, once a week to deliver in-person instruction. Oy, that’s a long class to be “on” for. Oh, and instead of it being a standard fourteen-week class, it’s compressed into eight weeks. (My other class is a standard semester, twice-a-week class).

 

I’m not sure what I was thinking in agreeing to this one, except that it’s good money, and it got me in the classroom to get me my sea legs back. I was so nervous the first day, that I made Bryon drive me. Because it’s nearly an hour from the house, he and Collin had iHop while I taught, and then they went exploring at a local park. This became their Saturday morning ritual. They became buddies with a waitress who never ceased to be amazed that my small child could eat a breakfast burger, a full order of mozzarella sticks, a short stack of pancakes and drink a milk shake. Perhaps he could pack all of this away because his mother wasn’t there to stop this glutinous atrocity, because she was too busy trying to convince a room full of freshmen the difference between too and to.  

 

Still, this meant that I was teaching three days a week. It’s funny how three days a week now sounds like a lot, when two years ago, it would be nothing. It didn’t take long for my semi-broken body to voice concerns. Within the first month, I had a headache that lasted over a week and had to cancel several classes. I’m not sure the students minded, but I did. I felt irresponsible and guilty. I’m not a class-canceller. Trust me, cancelling class is a disaster for students who can barely follow the syllabus as it is. When you change a due date, you might as well ask them to find Narnia.  Before my surgeries, I never cancelled. I used to come to class, practically straight from the ER. I’d be black-and-blue from IV’s, and I’d still show up, looking like a junkie.

 

Then..the mistakes. I ordered the wrong textbook for my entire set of classes, as an oversight. And, then for the admin side of my class, I wasn’t making mistakes, but I was almost making them, which for a perfectionist teacher like me, was enough to bring me to tears of shame. I had to have Bryon start double-checking everything I put on Blackboard, the online administrative side of classes. I used to be able to whip up a class, the syllabus, the assignments, and do the grading without even thinking. I could do that with one hand, and cook dinner with the other. Now, even with full concentration, I was having trouble keeping straight what year it was, what month assignments went into, and what week I should make a due date. I was incapable of managing. Blackboard is not designed for user error. One mistake and you have assignments due in July of 1967. I couldn’t cope anymore. My short-term memory, and my detailed memory were simply not working.

 

Finally, lecturing was an issue too. When I first started getting sick, one of the things that pushed me to really push to my doctor, was that I wasn’t functioning correctly neurologically. I was having trouble spelling, where I’d not had trouble before. Suddenly, I was spelling everything phonetically. Or, I’d be writing on the board, and forget what I was writing, mid-word. Sure, that happens to everyone occasionally; but, it happens to me, constantly. This issue only got worse, after surgeries. It doesn’t instill a lot of confidence in your professor when she is standing at the board misspelling, or literally forgetting she’s talking about. Also, it’s humiliating. Nothing says, “your professor is an idiot,” like stumbling over basic words.

 



 

I love my job. I love teaching. I love my students. I truly and deeply value their success. This meant that it was time to give up teaching, at least in person. I had to, not because I didn’t want to do it anymore, but because it wasn’t right for me to continue to do it if I couldn’t do it to the best of my ability. I was certainly doing an “adequate” job. I was making it to work, and I was getting their assignments graded in a timely manner. I was loading quality, engaging assignments to Blackboard, and I was lecturing pretty well. My students are used to my quirks of spelling, I suppose! In fact, I get all good reviews, and most of them want to take me for the next course.  

 

But, I wasn’t doing the kind of work that I felt was acceptable to my standards. I feel more comfortable online when I can spell-check. I feel more comfortable when I can have much more time to double, triple, and quadruple-check my assignments before I post them. I just can’t put myself in a position where I’m in the classroom anymore. It’s too overwhelming to my brain. Every day, several students come up to me, before or after class, and they all want to change something, add something, or modify something, and I can’t remember everything they say. It’s not fair to them. They aren’t getting what they deserve from an instructor.

 

So, this will be my last semester in the classroom. I know it’s the right decision because as the weeks tick down toward the last week, I get lighter and lighter, and I feel less and less burdened, despite knowing I still have new classes starting in the Spring. Those classes are online. It’s a relief knowing I can handle those so much more easily. My wheelhouse has changed, which is a bit sad, but also a relief, to know where I fit. I will miss student interaction, but I also love being home. I’ve noticed that as Collin gets older, he seems to need me more, not less. I think I’m right where I belong.

 

I have to accept that Chiari has taken away something that I love. It’s taken my career. Except, that it’s not taken it fully away. It has modified it. I still get to teach at home. I have learned to accept a lot of changes with my new life, and this one is easy to accept because it means I still get to do what I love, I just get to do it spending more time with my family. And, I get to keep doing it, no matter where we live. I’m okay with all of that. I can mourn the loss, but I can also look at the brightness of the future. It’s like all things Chiari: you have to choose to see the bright side, or you get stuck in the swamp of sadness.

 


Owl Have Bird Watching For...Ever?

Okay, that was a terrible title. Cut me some slack. I couldn't think of anything!

Nearly every night, just as we are falling asleep….well, I’m falling asleep, Bryon has been asleep for hours; I know this, because I’ve been poking him while we watch T.V. and saying, “did you see that?” and invariably, he has not seen that…anyway, we hear an owl. This owl is decidedly not off in the distance, providing a sort of sound-machine soothing, off-to-dreamland, light whoo-whoo for us. He is WHOO-WHOOOING, as it sounds, directly outside our window.

As you may remember, we live at the apex of a crazy ocean current, which makes sounds whisk around like we are in a Kitchen Aid on bread-dough day. Still, it sound sounds like it’s, no kidding, coming from either our roof, or the tree, right outside our window, the tree the tree man said would fall on our house on day. In other words, it sounds, positively, like if were closer, the bird would be on our headboard, leaving pellets in such a vast supply, I could sell them to third grade science teachers to dissect. So, this conversation has, definitely happened, perhaps more than once:

R: Bryon! The owl!
B: Mmmmph.
R: (now with the poking) The owl! The owl! Do you hear it!?
B: (taking off his ear plugs and face mask, as if I’m loud!) Mmmph
R: The owl! Let’s go find it! He’s back!
B: No.
R: C’mon! It’ll be fun! I want to find him!
B: We’re not dressed.
R: So, what! I go outside in my PJ’s all the time! Besides, it’s night.
B: No. You’ll never find it.
R: Not with that attitude.
Collin, farting around in Daddy's mask. He's a goofball!

Collin, farting around in Daddy's mask. He's a goofball!

Alas, we’ve never found the owl. Yet. Mostly, because I want us to find the owl. I’m very persuasive, so I think we will find the owl; or, at the very least, go a-lookin’. I’m very convinced that the owl lives in our tree, or in the eaves of our roof. The cats are obsessed with our bedroom window, and the top corner of our roof. Of course, it could be pigeons, the flying rats of the world, which I still adore watching.

Our pigeons make the weirdest sound I’ve ever heard. And, I learned they aren’t pigeons, exactly, anyway, when I rescued a baby one, and called the bird sanctuary to take it. They refused it, and said it was some fancy name that I forgot; but basically, it’s an invasive species. I could save it if I want; but, essentially, it’s their policy to let “nature take its course.” GAH! I was holding a baby tweeting bird!

She told me the protocol to save it myself though, and gave me very precise directions. It lived. Phew. Also, it smelled really, really bad. Like, it stunk up my bathroom so badly, that we couldn’t get the smell out for weeks, no matter what we did, even though it had only lived there two days. Powerful little guy!

I count that save as wiping my slate clean after saving the last baby bird I found, that my dog and cat ate, after either Bryon or I accidentally left the bathroom door open before we went to work. The carnage. I joke now, but I cried for days. I nursed that little hatchling from a featherless ball of ick to a full-grown bird that was just learning to fly. He’d be ready to release in a matter of days. I suppose that, at least, they got a good meal. A feather, in my stupid dog’s bed, was all that was left.

Anyway, maybe that’s why those “pigeons” make a weird sound…they aren’t pigeons at all! I wish I remember what they were. My mother-in-law, the first time she stayed here, woke up insanely early the first morning, looking for what was making that weird racket. I intercepted her, because I heard her wandering my home, looking a bit confused. She’d woken, “with the birds,” shall we say. I hope she wasn’t hoping to get a worm. Ba-dum-ch! I had to explain it’s the “pigeons,” and that they sound like that hear. They sound like a machine motor running and whirring. She thought we’d left something on and was trying to figure out what it was. Nope. Birds.

 

*

I can thank my dad for my love of birds. He didn’t tell me to love them. He didn’t specifically sit me down and talk to me about them. He just off-handedly would remark, “Oh there’s a chickadee,” or, “look closely, there’s a goldfinch in that bush!” When we went camping, he’d get very quiet and crouch down, and I knew we were about to see something special, and making me know that I should mimic him, and sure enough, he’d whisper, “there,” and spread some branch for me. I learned bird songs in this way, and in remarks that weren’t meant to teach, just conversation.

When my family and I are, say on the freeway to Ikea, and I point out the dozen or so hawks on phone poles, they are used to it. But, they have also grown used to me saying, “oh look a wren!” when we are sitting at a picnic table, or, “that’s not a crow, it’s a raven, look at its beak.” And, they are no longer surprised that I can point out all the song birds. At first, when I was first married, my husband used to say, “where does all this knowledge come from?” I’d say, honestly, “I don’t know? Doesn’t everyone just know this stuff?” I didn’t realize that every home didn’t have the Audubon field guide by the window with binoculars. Ours did, and does. For that, I can truly thank my father; because, I truly adore birds.

Still, they've not yet got to hear me say, "look, there's my owl."

Speaking of the idea that people didn’t realize that every family doesn’t do something; did everyone read about the poor soul who didn’t realize that every family does not, indeed have a communal poop knife hanging in the laundry room. Oh my god. The horror.

 

*

 

Back to my original reason for writing, I just got off the phone with my husband, who I spoke with nearly his entire drive from El Segundo, to pick up our son, in which I read him descriptions, and nesting habits of owls that live in Southern California. Folks, in traffic, this was about 45 min; spend a minute honoring the heroics of my husband. This is who I am, and who he is. He tolerates my weird obsession with birds, and he pretends he cares.

He insists that when we retire, we can go for hikes with binoculars and a bird journal, and that we can find a Burrowing Owl, because they are the cutest lil’ things I can imagine. Look, but don’t touch, Rachel!

Thanks  Audubon Society.  Go to there. Give them money. They are good people.

Thanks Audubon Society. Go to there. Give them money. They are good people.

 

 And, hopefully, we’ll see a Great Grey Owl in Yosemite, before they all disappear, because I think if I put my eyes upon one, the secret of life will reveal itself to me, that’s how majestic and powerful they appear.

Thanks again,  Audubon Society ! Go to there. Give them your first born child. They do good things!

Thanks again, Audubon Society! Go to there. Give them your first born child. They do good things!

 

I think I will settle, for now, for finding the owl outside our window. We have a little less than seven months left in California before (damn military orders, making me leave my state!) we can find that owl. Do you think we can find it, and I can get, at least a blurry night-time shot, in which you can make out nothing of substance, of my mysterious nighttime visitor? When I call him, or her, that, it sounds so swarthy.

P.S. I deeply hope it’s not a screeching owl. Apparently, they are so protective of their nesting area, they will attack humans. Terrifying. I don’t want to die of death-by-owl.

Speaking of intelligent birds. Did you know that crows can remember human faces? In scientific experiments involving cruelty to crows, such as stealing their eggs, the scientists who took the crows eggs, had to cover their faces on the way to their cars at night, with burlap sacks because the crows would form teams and attack those specific scientists. The scientists, prior to this experiment, did not know this about crows, and learned it, early on in the study. It was a major breakthrough in recognizing how intelligent they are. Seriously don’t get me started on birds…wait, I started it! Anyway, I don’t want to die by death-by-crow either!

*

Wait! Re-reading this post for typos (which I always miss anyways), I just realized something: first of all, I'm weird (which I don't particularly care about). But, now I'm officially super-weird; and I'm an old bird lady. SEND HELP!

A Sh*tty Post

Confession: This story is almost a month old…it took me that long to get my shit together and finish this! Sorry!


But….

I’m ready to talk about something totally, absolutely, and ridiculously, humiliating. Are you ready?

No, really?

Are you ready?

Because, it’s about to get all kinds of gross, and personal, in here.

I know that I share here. It’s a nice outlet. My sister has called my “outlet” self-indulgent, which, at the time, I tried very hard to take as the insult it was intended to be. It was hard though, because it occurs to me that almost all communication, except for true listening is self-indulgent. We all want to be heard. So, we talk, write, shout, and send smoke signals.

I know that I’ve been silent for a while. I’ve been…processing…shall we say? I get to do that. I mean, I’m a little fucked up. In the past 36 months, I’ve had my head shaved twice, my skull cracked open, and titanium rammed mere fractions of a millimeter from my brain.

As a quick addendum to that titanium; I’ve recently learned that, at any given moment, my body may decide that the titanium plate and screws, are no longer welcome. It may begin rejecting them, by propelling out the screws at rocket-ship speeds.

Okay, they will propel at slow, glacial speeds. However, any speed at which a screw propels itself from my skull, and through my scalp, feels too fast. The first sign of this will be that I’ll feel the fucking screw…in…my…scalp! Well, I’ll feel it coming through my scalp, like a This Old House episode gone horribly, horribly wrong.

Just, imagine me, brushing my hair that I haven’t cut in two years, because it’s now my security blanket (we’ll get back to that, and why I look like a filthy bag lady – not Rapunzel) and, wham! Screw poking through my skin!

Now, imagine how often that I check my scalp for suspicious lumps. I’m like a pubescent boy who feigns concern for his girlfriend’s breast health. A number with exponents per times per week, I ask Bryon, “was this lump here before?” I ask him so often, in fact, that he always says, “yes,” without even checking. How dare he not take my irrational concern seriously?

Aside from the whole surgery and imminent screw loose (yeah, I get it) thing, I’ve also lost my family. Lost is a weird word choice. I shed them like an extreme form of molting, but the feeling of loss is still there. I can’t exactly eat my family, the way a lizard eats its skin when he’s done shedding and growing. That’d be gross. And, criminal. And, I don’t want to. I’m a vegan.

My therapist suggested that I consider myself adopted. Not to diminish the experience of true adoptees, of course. Still, lots of parents either give up, or are forced to give up their children because they are unable to either physically, or emotionally, provide for them. I’m not much different in that regard, except that I’m an adult. So, now I’m adrift in the world.

Parentless.

That’s a lot of shit to deal with in a relatively short amount of time.

I’ve gotten side-tracked.

For a long time.

Sorry!

I promised you a gross confession.

Physically, I’m doing the best I’ve been doing since I got sick. Brace yourselves: I’m running. No shit. I’m capable of running! R-U-N-N-I-N-G again! Not a lot. And, not fast. And, not every day. But, every step I take that is faster than a walk, is like the greatest step I’ve ever taken. It’s how I imagine it must’ve felt to walk on the moon.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I'm not saying that I high-five my WW poster after treadmill runs, but I high-five my WW poster after treadmill runs.

I’m on the least amount of drugs I’ve been on in at least three years. In fact, It’s the first time that I’ve not been on a daily opiate regiment. But, when it’s bad, it’s still really bad. I still have an opiate prescription for when I get a massive headache that can’t be controlled by other means, especially because my headaches, when I get them, last for days, because they can be caused by my wack-a-doodle intracranial pressure, and that pain can’t be controlled by a Tylenol.

But, there’s a not-so-well-kept secret about opiates: they back up your poop system. For most people, with normal colons, this is no big deal. When they are done taking them, they eat a couple of prunes, and they are good to go. This is also no big deal, because most people who take opiates don’t need to take them for very long, or very often.

I wish I had a regular colon. Sometimes, just seeing the Oxy bottle in the drawer is enough to block me up for a month. My colon has a mind of its own, and it is susceptible to the power of suggestion. I think it might be a bit of a hypochondriac, frankly. If it even hears of a negative condition, it catches it. Yeah, that’s right, my colon can hear. Can’t yours?

A Pepto commercial for traveler’s diarrhea comes on, and my colon becomes convinced that the mailbox equates to a trek through India, stopping to drink from a well that pulls ground water from a stagnant creek that the locals use to rise the diapers of children infected with cholera. Strangely, I can see hundreds of commercials of Jamie Lee Curtis and her lady-yogurt, and I never find myself being regular.

tumblr_m0jm55SkGt1qk455to1_500.png

 

This would be no big deal, except that I have (confession time) yet another rare and, this time, humiliating, medical condition: bile salt diarrhea. Bile salt diarrhea can be caused by a number of things, but it’s a relatively rare side effect of removing the gallbladder. Guess who has two thumbs and has had her gall bladder removed?

It’s hard to take a picture of yourself with two thumbs! Ha! This is from me grading the other day, anyway.

My god, my thumb looks HUGE!

My god, my thumb looks HUGE!

 

One of the functions of the gallbladder is that it regulates how much bile the stomach uses, and then gets dumped into your intestines to continue digesting your food in the next stage of digestion. Without it, in some people, the stomach has no idea what to do when food hits it; so, it dumps bile straight into the intestines. Because the intestines are not equipped to digest huge amounts of bile, it rushes, straight through your intestines, along with the undigested food. The stomach has a difficult time turning off the bile dump, and you will continue to pass this bile, rapidly, until it turns off. Of course, you’ve smartly stopped eating by now, because you’re already in the bathroom. Plus, it’ll keep dumping bile through so long as you are eating, and your stomach is sending the signal that there is more food to digest.  

As this problem became more prominent, I sometimes ate, practically, on the toilet, as that’s how quickly my food passed. I never held anything in longer than 15-20 minutes. We are a family with no shame (okay—gross, sometimes); so, we would (and still do), occasionally, play the corn race. When we eat corn, we see who “sees” the corn again first. I always won. By days. Because I always saw it again within minutes, I continue to be the reigning corn race champ! Undefeated!

I have to take my victories where I can get them. I’m not exactly going to win any Olympic gold medals in my lifetime.

As you can imagine, this is a relatively difficult problem to diagnose. You go through the following stages:

Did I seriously not make it to the bathroom last night? That was totally embarrassing. Hope that doesn’t happen again.

  • OMG. Again?
  • Again?
  • Wait. This is ridiculous.
  • I’m too embarrassed to tell the doctor that I shit myself…regularly.
  • Okay, I should tell him, because I saw an entire undigested piece of pizza last night. Am I getting any food?
  • Hang on…if I’m shitting everything I eat, why are my thighs still so big?
  • Nah, I’ve got this under control! I can drive the kid to school, without a towel under me, so long as I don’t eat before noon, and not after 9 pm.
  • Wait…that’s not normal.
  • Okay, sucked it up, and the doctor said to add bulk fiber and take Immodium. He didn’t seem phased that I have to take 20 to make it stop. 20! Hmmm. Can you OD on Immodium? Stupid military medicine.
  • Whelp, it’s been six months, and now, I’m wearing Depends to a job interview. Is this a reasonable solution? What if I get the job? Is this the long-term plan? I can’t work two hours away, and wear Depends!
  • Do Depends show through these pants? The students will totally be able to tell.
  • I’m so fucking hungry. I can’t go on not eating through a full day of teaching and driving, just so I don’t have to wear Depends under my clothes!
  • Back to the doctor. Fucking military medicine.
  • Ugh. Gastroenterology. Of course, I have to do a lower GI thing with the poop scope.
  • Phew. This is fixed with a simple med. Why couldn’t this have been easier?

So, yeah. It’s easily controlled. One simple med, and I’ve never had another problem. It slows down the digestive process, and I’m totally fine. But, if I take the digestive slowing med, and I have a headache that week, where I have to take opiates, I’d never go to the bathroom again. I think my colon would rupture. I say that jokingly, but in reality, it’s a possibility. If I had to take opiates, for say, weeks on end, and I took my slowing med, I could actually die, eventually. I have to be super careful to monitor the ol’ pooper.

Stool softeners: not just for post partum mommies.

After a headache that requires opiates, it takes anywhere from a week, to a month (not even kidding) to go again, “naturally.” We call the ensuing gut swelling my poop babies. And, they hurt. I can’t bend, twist, or move, because they get pretty fucking big.

I’ve learned that the best thing to do is to get some control over it, pretty early, before I look three months pregnant with Collin’s poop baby sibling. Ex-Lax has become my friend. Barring that, Ducolax suppositories. Please pray for me, that it doesn’t come to the second solution very often. They suck. If you’ve ever needed one, you know why. Dear Hera, the fire.

But, Ex-Lax can take more than one dose, and it’s a delicate balance. A very delicate balance.

Take a dose. Wait twelve hours. Nothing.

Take another dose. Wait twelve hours. Still nothing. Ponder whether you want to live or die.

Take another dose. Wait twelve hours, and know you are moving towards the Ducolax in the morning. Also know that the third dose (or the previous two) can open the gates of hell at any moment, and if it does, it will be horrible because it took so long.

Wake up at two a.m. and hate your very existence.

This is what happened to me over the weekend.

From the hours of two a.m. until nine, I pooped. I pooped everything I’ve ever eaten, in my life. I pooped everything everyone has ever eaten in their entire lives. Only it wasn’t like this:

 

At least not at first. It’s like passing softballs through a straw, until you get to the end; when all of the sudden, it’s like Jeff Bridges on the toilet, and you wish you were dead. It’s difficult to determine which is worse: softballs or Jeff Bridges. Softballs come with cramps that and blood; Jeff Bridges comes with, well, Mississippi Mud.

Then, you fall asleep on the couch, cold and sweaty, and you can start all over with the digestive slowing meds. For the next week or so, you get to deal with blood and the dreaded “fissures.” Seriously, how much do you know about me, right now?

 

I switched my insurance to Tricare Standard, instead of Prime, which gave me a new primary care provider. She pointed out that my digestive slowing med came in a different format, which has changed my life once again, and made it even more effective, and made it work even better, if that was possible, so I’m gloriously happy. We’ll see what happens the next time I have to take an opiate.

 

But, I’ve got a system to manage my co-“conditions.” It may not always be a comfortable one, but it works. It may sometimes require Ex-Lax and me laying on the bathroom floor, and praying that if there’s a God, I can have a serious talk with him about why he made me out of spare parts. It also may make me eternally grateful for steroid cream – did I mention that crapping straight bile is equivalent to vomiting bile out of a hole it’s not designed for, so it causes surface burns to your skin? Yet another time I find myself eternally grateful for Big Pharma and western medicine.

 

So, there’s my gross confession story. As I was lying on the couch this weekend, cold and clammy, I thought to myself: someone would love to know about this glamorous part of being sick that has previously gone unreported. Am I right?  

 

This is Spinal...Damage?

Sometimes, I wish I weren’t right all the time. At least, I wish I weren’t right all the time about my own body. Wait, no; Judy Blume taught me to trust my own instincts about my (female) self. Yay periods! No, that’s still not right.

Okay, mostly I wish I weren’t right about predicting when something ridiculous is wrong with me, and I that I may need more surgery. Or, that I’m randomly about to become the weirdest case of “sick” or “falling apart” in the history of some doctor’s caseload.

When Collin was a baby, I had to have my tonsils out in an emergency surgery, for example, after having an abscess on them drained in the emergency room, because it had become so swollen it was compromising my airway. By the morning, it had re-filled with so much fluid, that I had to be wheeled back to surgery within an hour of my follow-up check because my entire airway was blocked. When it comes to finding ways to be messed up, I don’t screw around; I go hard.

Since I started this ever-so-epic journey of Chiari, another thing I was right about:

*Insert Digression*

Dear Doctor-First-Neurologist-Who-Told-Me-I-Was-Fine,

 I wasn’t.

Sincerely,

Patient Who Told You So

 *End Digression*

Anyway, since I got sick, even before I knew it, I have also been complaining about very specific neck pain. I can point at two spots, one worse than the other, right down to the centimeter, that bother me. And, as it turns out, I have been right all along about those things too.

This is how these complaints have traditionally been received….

“Rachel, Chiari comes with neck pain. It’ll feel better once you are decompressed,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons and fully believing that it’s true.

But my neck pain didn’t, and hasn’t, improved. And, post-operatively:

“Rachel, you’ve had Chiari surgery. Your neck muscles were opened like a curtain. Twice. You’ll have some post-operative pain for a while. Give it some time. Plus, your neck will always be a bit weak,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons, but at the one-year point of surgery #2, a little suspicious. Mostly because she can’t even wash her hair without crying.

So, I talked to my pain management doctor. He’s the very bestest doctor in the whole world, so I really trust him, and I know that he listens to me. Hell, even if he’s not, he’s the best faker in the world. He’s really good at making me feel like he’s listening. I imagine that in his outside life, he’s used up all his listening skills on his exhausting patients, like the ones I can hear through the walls while I wait, begging for Oxycodone because they have indescribable pain in a different spot than last time, and his wife wants to murder him because he can’t remember to bring home the damn bagels that she just called him about on the ride home.

Anyway, I’m not on any pain medication right now, so my pain is, not currently what you’d callmanaged.” It’s out there in the open, screaming to be heard. It’s basically having its own little pain pride parade every day. But, he’s still trying like hell to help. He’s concerned. I’m concerned. Bryon’s concerned. I think the mailman, who is forced to witness my walk of (non)-shame to the box in my pajamas every day, is also concerned.

Don’t get me wrong, I didn’t expect no pain for the rest of my life (not that I didn’t hope for that scenario – don’t all Chiari patients long to be a success story that does something amazing like running a marathon again, or being in a Wheaties commercial?); but, I did hope to be able to sit upright for larger portions of the day.

I explained for the billionth time, to him, the few spots on my neck that were agonizing, and stressed that I’ve said this at every appointment to every doctor. And, I told him that there are other things that are freaking me the fuck out, now too. My arms are going to sleep, sometimes for up to 18-24 hours at a time. I get dizzy when I look up, sometimes to the point of falling over. I can’t see if I look to the left or right too long. My legs are week, especially my left one. My left hip hurts so much sometimes that my Tiny Tim impression is far too true-to-life.

He’s known that my neck has hurt all along, and he’s done plenty to try to ameliorate it, from physical therapy, to suggesting a medical pain implant device, as a last resort. But he did a full exam and was pretty shocked at the extent of the new weakness. So, he sent me for a battery of tests and images that made me feel like someone was finally taking it a little more seriously than, “this comes with Chiari.”

The most “fun” test was the EMG, because everyone loves to be stabbed with tiny needles to see how their nerves are functioning. Spoiler alert: my nerves seem to be functioning okay. But, this is good news, because we were temporarily terrified of a potential MS diagnosis. Phew.

My surgeon likes to say:

“your spine looks great! I wish I had this spine!”

This assessment has perpetually annoyed the fuck out of me. No matter what specific question I had for him, his answer was always that my spine was great. Great. Fantastic. Great. No issues. Great.

Hmm…

That seems so weird for someone who has had neck issues since day one. It was, in fact, the first thing that sent me to the doctor, aside from the headache. My neck pain spread so far down my shoulder and neck that my whole arm became useless. I couldn’t lift my work bag. Thanks to fantastic military medicine, I was prescribed Motrin, and I was miraculously healed.

My surgeon is a fantastic surgeon, but he has a reputation for not really “cooking stats,” but for keeping his stats the way he wants them. This means that if you go see him for Problem A, he won’t “let” problem B pop up on your case, because he doesn’t want to mess up his high success rate on his surgical stats. So, no matter what you come up with on your imaging, he’ll tell you that you look great.

I’m a Chiari patient. He fixed my Chiari problem. I’m not a spinal patient. Not even if that Chiari caused the spinal damage (which it obviously did). Chiari fixed. Job done.

This can be a problem in sick-person world, because finding a spinal surgeon to take on someone else’s work is, well, challenging. Duh, they don’t want their hands dirty with someone else’s trash stats either! Meanwhile, patients suffer.

And, in case you hadn’t guessed, you don’t want the Jiffy Lube of spinal surgeons messing around in there, especially at the C-spine level. Your C-Spine is the level between your neck and shoulders. A tiny slip and you are paralyzed from there below, including breathing. Hooray! Jiffy Lube surgeon means the potential for diapers and a ventilator forever! At least I won’t be able to say my neck hurts, right? Not funny? No sad clown?

So, drumroll….

I get all of my imaging results back and what do you know? My C-Spine is rather fucked up. In fact, I’d like to take a moment to congratulate C3 and C4 right now for being the only two vertebrae, currently, holding down the fort. Great job, guys. A round of applause.

C-1, which is the vertebrae that my first surgeon shaved to make room for my brain, whelp, that one is deteriorating pretty badly. C5-7 are also degenerating, and the discs at most of these joints are bulging, especially badly at C7.

The insane part is that these are the exact spots that I point to, every time for the doctor. Every. Fucking. God. Damn. Time. And, I always say, “This spot is the worst,” at C1. Always. At C1, I always demonstrate how if I hold my head a little differently, I can relieve some of the pressure, but it doesn’t help for long. Hmmm, wonder why that is! Because that’s where my amazing (I’ve decided to compliment it from now on, in hopes that it will be nicer to me) brain used to be sitting!

Grrrrr.

Did you know, that Chiari is a progressive condition? That the longer your brain, which is fucking heavy, sits outside your skull, and rests on your SPINE, where it’s not supposed to sit, it does damage? It’s a damage domino. I was 37 when I was “fixed” the first time, which failed; 38 when I was fixed the second time. So, I was 38 when the weight of my brain finally got lifted off my spine. For 38 years the weight of my brain rested on my spine. No shit there’s a bunch of damage there.

So, what to do?

Well, that’s the million-dollar question. I have no idea. I’m scared right now. I have a bunch of information that I have no way to fully figure out, at the moment. I’m relatively certain my current surgeon will say what he always says, but who knows? With a report in hand that says my spine isn’t great, he may not be able to say that. Of course, doctors like him like to say things like, “this kind of thing is normal,” especially for women my age. Since this damage is progressive from reports before, I know it’s most certainly not normal, my man.

Um no.

Most women my age can function without a C-Collar. Just sayin’, doc. Not going to get away with that one. But, I don’t want to rush into spinal surgery, either. Fusion is the most common spinal surgery, but at the C-level it’s a big damn deal.

And, it’s relatively rare at C-1. There are significant risks of fusion at C-1, because C-1 holds your head ON your neck, and makes it turn. It means that there’s an almost guaranteed reduction in mobility and range of motion, usually up to, or at least, 50%. Hooray! Because of this, it’s usually only done when required; for example, when your neck is broken, or you are literally decapitated internally. It’s also done when, wait for it, your neck bone (yeah, like mine) deteriorates. Booyah!

Ding! Ding! Ding! What does she win!? The high probability that she’ll soon be filled with neck hardware, new scars, another shaved head, and the increased frequency of surprising her from both behind and all sides. 

There’s a pain implant device, but is that just a Band-Aid until my neck gets so bad that I can’t move at all? Then what? What if there’s nothing left to fuse at that point? Do I go back on pain meds and hope for the best? Oy!

Oh, and by the way, my hip hurt because I had broken it, and never realized it. Yeah. For real. I broke my damn hip! Who the hell does that! Apparently me.

Okay, I’m being dramatic.

But, it’s mostly true. Apparently, I broke a big ol’ chip of bone off my hip and there it is on the X-ray, having had its maiden voyage, and then rejoined its pals on the old SS. Hip Bone! I wonder where that chip was trying to get to?

Now, I don’t feel like such a damn baby for whining about it. The report says that I may have also a labral tear, but meh. I think the broken hip sounds more impressive. I think I’ll adopt a permanent limp from now on.

Bryon says he thinks I have osteoporosis because since he’s known me I’ve broken too many bones, and my spine is falling apart way too quickly for anyone’s taste. And, he’s all braggy about having never broken any bones. I think that instead of worrying about me having osteoporosis, he should worry about which of his bones I’m planning to break for making fun of my pitiful weakness. Except I’d probably break something trying to do that, so that’s a terrible idea! And who gets to almost forty without breaking a single bone? Didn’t he play as a child? Come on! I was a dork, and even I broke two bones as a kid! Lame ones, but still.

We have about a jillion doctors’ appointments coming up to talk over options and what to do in the next few weeks, and I’m hoping for more answers, but I know this process. It’ll leave us with more questions and more answers than before. I know we won’t know anything more. I know that it will be months before I know what’s happening. I have names and numbers of more surgeons for second and third opinions, if my surgeon decides to be a butthead; but they are all, of course, out of network. Ugh. But, it’s the beginning of the process.

So, away we go again! Wish us luck.

I leave you with the image of this insanity, if only because of how happy my boy and I look. Bryon noticed that every time he tickled Collin, I laughed too. Collin’s laugh always gets me. Every. Single. Time.

 

I may not be able to sit up for more than a few minutes at a time, or get dressed very often, or comb my hair, or put on my makeup, but I can let my boy lay next to me and listen to him laugh.

So, ignore the up-the-nose-shot, and how ugly I look, and enjoy mommy-son joy.

Bad Hair Day

Yesterday was a tough day for me. I cried about my hair. I didn’t have a bad hair day, or anything like that. I just re-discovered that I’m bald. And, it’s not even like I’m that bald anymore. I have about two inches of growth, which is just enough to get tangled up in a hair tie, and yank itself back out when you try to wrap it a second time. It’s a glorious length. I’m really excited for all these girls who are under-shaving right now for “volume,” to realize what a stupid mistake they’ve made, in a few months, when they try to re-grow it.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

 

Anyway, I’d put my hair in two braids, when I got out of the shower. This isn’t an unusual thing for me to do, but I guess I never looked at the back before. As I was putting my makeup on, getting ready to go pick up Collin, and then to a doctor’s appointment, I caught a glimpse of the back in the combination of mirrors that the wall mirror and medicine chests give me. It was then, that I realized what an atrocity the shaved portion regrowth looked like.

I spent the next fifteen minutes trying to finagle it with pretty pins, and with headbands. Then, I cried. No matter what I did, it looked terrible. I finally left it the way it was, but that was worse. It suddenly occurred to me that no matter what I did “in the front,” with my makeup, with my clothes, with my shoes, I had this disaster going on in the back that said, “Chiari,” or “brain surgery.”

It became this metaphor for my life: Chiari will always be chasing me. A headache ball is always waiting to drop. Chiari, and pain will always be in the wings, waiting to destroy whatever window dressing, whatever hopes I put on myself. It’ll always be behind me, chasing me. So, I cried some more.

Then, I stopped crying, finished my makeup, and got in the car. As I backed out of the garage, I looked in my rear view mirror and had to do a double-take, I was orange. Orange. That’s right. Orange. Not just a little orange either. I was gross. Apparently, the lighting in my bathroom, with the blown bulb encouraged me to go a little heavy-handed with the peach in my bronzer palette. But, thanks to my setting spray, I couldn’t wipe or blend any of it out. So, now I had bad hair, and I was orange. Talk about feeling self-conscious.

When I picked up Collin, thinking that maybe I was making too much out of it, I asked him:

Mommy: Do you think I look orange?
Collin: No, not really. But you look a little like Donald Trump.
Mommy: Thanks, I feel all better now.

So, I did the least I could do: I pulled my braids out, in the car, and smashed my hair around into knots and blushed profusely until my face was merely a red, splotchy mess. I looked especially pretty, if I do say so myself.

Collin and I had a great-ish afternoon, except his public meltdown at a store, in which he threatened to run out into traffic if I didn’t buy him something, anything, in a vintage store. He didn't run out into traffic, but he did run outside. This was after he ran through the place, touching everything he could, and demanding that I purchase everything there, including beaded purses and hats with veils. No, this isn’t bad parenting, this is a child with a one-track mind that cannot be stopped.

Then, the meltdown in the evening resulted in him dipping a glass in the toilet, and dumping it on me, repeatedly, and charging at me with a closed fist. I was really excited about that one, especially since it was after he tried to pull a towel out from underneath me (since, I had to dry the toilet-water floor), in hopes I’d fall. Not to worry, he'd forgiven me for the cause of the meltdown (me throwing away his special piece of soap), only moments later, when in his rage, he blew his nose too hard, and it caused a bloody nose, which led to a panic attack. He, literally, cannot stand the sight of a bloody nose, and goes into actual panic when it happens, so he needs his mommy to hold him. He'll punch me one second, but then crawl into my lap in terror the next. Nothing to see here folks, totally normal, right?

Oh, and it shouldn't take any kind of emotional toll on me, or on Bryon. We should be able to just flip right along with him. We should be able to continue to speak at whispers when he's screaming, which we do. We should never touch him when he's raging, which we don't, except to protect ourselves or him. We should never tell him that he's bad, just his actions. It's exhausting. And, when he destroys our house, our things, and hurts us, then needs us, we are supposed to hold him like he's still our precious, special baby, even though less than five minutes prior, he tried to punch us. The thing is, he is our baby; he can't help what's happening, but it's so hard, so very hard to remember that.

Overall, it was a pretty terrible day. I felt hideous and my son tried to assault me, yet again. Knock him into next week, right? That ought to teach him, I’m sure. Instead, we’re working again, and more, with some added doctors on amending his initial diagnosis. There’s a high probability that there are other mental health issues that are not being properly diagnosed or treated, and that we need to explore. We are working pretty hard to get him the therapies that he desperately needs.

So, today I’m recovering by doing nothing. I’ve earned it. I miss the dog and I miss the feeling of forgetting about my bald spot. I also miss not being orange. So, I’m enjoying a clean face and a non-baldy head.

Popping Pills

This is my pill case.

There are many like it, but this one is mine.

Just kidding. But really, this are the pills that I have to take, every day to survive. If I don’t take these pills, I will likely have a seizure, or feel very, very badly, and wish I were dead. As you can see, there are little boxes for morning, noon, evening, and bedtime. Phew, because I can’t remember if I took my pills, sometimes (all the time) from one part of the day, till the next. This helps take the question out of it. Or, you know, the death, from taking them two or three extra times.

Bryon fills it up for me, every Sunday night, so, he could kill me if he wanted to, because I don’t even remember what the full dosages are, anymore, for most of them. Well, that’s not true, I do, but I’d get confused trying to fill it up. It’s too much math for me these days! Once all those little doors are all opened up, I’d feel like a third string mathlete who got called to “the show” because everyone else’s pocket-protectors were destroyed in a freak calculator fire.

Anyway, I thought I’d take a minute to explain what it’s like to be on so many drugs, foreveh. All the pills in this case are non-narcotic, and are non-addictive. There is nothing in here that causes anything that, say, means I cannot drive, or am impaired in any way. But, it still means that I have to take a bunch of stuff. They all help, a lot, but they don’t make me better. I’m an open book about my condition, and what I use, and do, to treat it, so why not give you a glimpse into my meds, right?

Topamax

A controversial drug in the Chiari world. Lots of neurologists start headache patients with Topamax, or its newer patented drug, Trokendi, which is just an XR formulation. The generic is called Topiramate (or Topiramate XR, in the case of Trokendi). It’s an anti-seizure medication that has shown to be very effective at reducing migraines, as migraines originate, in many cases, in the same part of the brain, as seizure activity. Lots of people in the Chiari community think that it’s akin to poison because it has a lot of negative side effects, especially during the adjustment period, such as confusion and making your food taste bad. The confusion goes away, but making soda taste bad, not so much. I think we could all live with less soda though.

I know a woman who claims that she failed a fourth grade math test; drove her car off a bridge; and that her red blood cell count was so elevated, her doctor thought she might have cancer, but didn’t. Since a grown woman doesn’t have call to take a fourth grade math test, and (I think??) it’s a white blood cell count that indicates cause for alarm for cancer (which she didn’t have, anyway), and the bridge thing is the questionable icing on a cake made of lies, I feel like she might be exaggerating her response to the med, but who am I to say? Either way, lots of Chiari people call it Topashit, Dopashit, or Dopamax. Really, I just think it boils down to the fact that they don’t want to believe that any of their headaches could be related to anything else, and don’t want to trust a neurologist to treat them, if it’s not to refer them to a surgeon. Chiari patients are inherently mistrustful, and with good reason.

Regardless, I’ve taken Topamax, since I was a teenager, in varying amounts, from 50 mg a day, up to 800 mg a day (an insane amount, prescribed by a terrible doctor), I’m on 300 mg a day now, and that seems to be a good, stable amount. I have my liver and kidney levels checked regularly, and I’ve had no damage, which is another side effect (stones especially). I’ve not failed any math tests, driven off any bridges, or had any fake-cancer scares, yet. But, Collin’s in fourth grade now, so if I have to take one of his tests, I’ll let you know…but wait, he’s in fifth grade math. Shit, I won’t ever know!

Gabapentin (Neurotinin)

Gabapentin is for nerve damage. I didn’t realize how badly my scalp nerves were damaged, until I was prescribed Gabapentin. I just thought that it was normal to not be able to brush my hair anymore, or to feel like I was constantly being stung by thousands of invisible, tiny bees, at all times. That’s, apparently, not normal. Who knew? Gabapentin took several weeks to get used to as well, because it works on the brain, and it took several weeks to work up to an appropriate, stable dose, but I love it.

It makes you ungodly tired, at first. Like, I could barely move my face off of the pillow, for the first few weeks, but I’m perfectly normal now, and I don’t know how I survived without it. Most people claim that it makes you gain weight, usually around 30-60 lbs., but I’ve not had that issue at all. I’ve found that being able to move my head without my hair follicles sending stabbing icepick pain through the rest of my scalp makes it easier to exercise, not more difficult. I was hesitant when I read a lot of people claiming this wait gain, so I read through the literature, and saw that the weight gain incidence was something like 2 out of 336 patients (vs 0 given placebo). So, when I see dozens and dozens, no hundreds of people on groups, posting that they’ve gained 50 lbs., or more, thanks to Gabapentin I think there might be something else going on. All I know, is no more tinglies!

Cymbalta

Did you know that depression is pretty common in the chronically ill and those with severe, chronic pain? If you read this blog, I bet you did. I take Cymbalta for my ongoing depression. I tried several drugs before I got it right with Cymbalta. It’s made from fluffy kitties, clouds and unicorns. It’s amazing. It gives me the energy that I lack when I’m in a low, and it keeps me level when I don’t want to be. It doesn’t cure depression, but it makes it more bearable, and makes it easier to help me to help myself. But, it gives me dry mouth. Why do all anti-depressants give you dry mouth? Seriously? It’s the worst. And not just dry, but like you’ve been licking your living room rug all day, and then sucking on a back of pennies for refreshment.

I have zero shame for taking Cymbalta, and if anyone ever wants to talk to me about other drugs I’ve tried and why I didn’t like them, I am happy to discuss. I know someone who claimed to have had a stroke after one pill of Cymbalta. Thankfully, she survived; and, considering her harrowing battle to survive driving off a bridge, failing a fourth grade math test, and a blood test that was nothing, she’s lucky to be alive. In other words, I think she did not have a stroke. I’m pretty sure she’s just anti-all-meds, which is always abundantly clear, as she recommends wrapping your feet in hootchie-mama oil and breathing in the relaxing scent of hippie-sweat, available from your local oil dealer. Or her, of course.

Stool Softeners

Is there much more to say about stool softeners? I take opiates. Poop is hard when you take opiates. Stool softeners make poop softer. Must you know everything?

Synthroid

I have a hypoactive thyroid. So, I take 50 mcg of Synthroid a day. Once, when the prescription ran out, I was too lazy to get it refilled on time, so I thought to myself, “I wonder what would happen, if I just stopped taking it. It’s such a small pill, what can it really do?” Know what happens? You develop a giant goiter! That’s what! They thought I had thyroid cancer, which was a terrifying 36-hours. Thankfully, when I got back on my meds, it shrunk back down to normal, within a few weeks. So, note to others: don’t stop taking your thyroid meds. I only ever really called to refill it, not because of the goiter, which I barely noticed, but because my hair kept falling out in handfuls, and I was really, really tired. The doctor though, spotted the goiter from across the room. Apparently, my family and I are not that observant of large lumps on my neck.

Clonidine

Clonidine is, technically, a heart medication; but, it lowers your blood pressure quite nicely, and knocks you the fuck out. It’s a great drug for combatting withdrawal. You can take quite a bit of it, especially when you are in the throes of it. Since I have to do withdrawal, yet again (ugh, I know), it’s my ever-faithful friend. I take it at night, usually, to make it through the night, because it’s the longest time I go, usually, between doses of Oxy. Me and Clonidine are well acquainted. He lets me call him Clonnie. And he calls me, His Bitch.

Benadryl

I am allergic to everything. For real. I eat a cupcake from the bakery at Von’s and I’m fine. I eat two, and I get a rash. Enter: Benadryl. I get rashes from just about everything these days: candy, cookies, cake, essentially everything delicious. Aside from the allergies, Benadryl can be your best friend when you need extra sleep from withdrawal, and it helps with some of the symptoms, like the post-nasal drip, sneezing, and the red, watery, running eyes.

Drugs That Aren’t in the Daily Box

Oxy

Obviously. I can’t get rid of that damn med. It’s like a bad re-run, always on. But, it’s back in the rotation from the hideous, month-long headache from the rhizotomy. Back in the withdrawal saddle again. But, Dr. W, my pain management doctor, who rocks the house, has a new idea for me, that is super-scary, but sounds amazing too. He wants to do a spinal cord stimulator. More on that later, but eek!

Muscle Relaxers

I am down to taking these, mostly, just at night. I take Robaxin, which is pretty strong, but they work really well. They make you sleepy, sleepy, sleepy. I have a strong dose, obviously, so I’m always careful when I take them, such as not before driving, even though I’ve been on them forever, and could probably handle it. There’s no room for probably with safety, right!

Various Migraine Abortives

I have several Triptan medications, which are the go-to for migraines. I also keep Zofran at home, which is a prescription anti-nausea medication. I am lucky enough to have dissolvable tablets, that you don’t have to swallow with water, so you don’t barf them back up, during a migraine, or Chiari episode. I also have Firocet for pressure headaches. I also take Advil when it’s really, really bad, because the anti-inflammatory helps a lot, but it irritates my precious, and apparently, delicate tummy.

Being sick in a forever way, means you are tied to some forever meds. It’s not a glorious existence, and it means people are forever looking at your pill case like “I’d never do that,” or “I bet if you just rubbed some coconut oil on it, you’d feel better,” you know, because obviously, coconut oil cures and fixes everything. But, until you get really, really sick, you don’t know shit. All you know is that you don’t really know what you’d do. You don’t know what it feels like to live in fear of the headache that will, finally kill you, in a stroke or an aneurism. You don’t know what it means to just hope for maintenance, not better, worse, or death. You don’t know what it means to just want to survive, at status quo. You don’t know what it means to just want to survive, and hope, that one day, that means thrive.

So, for every one person who says, “I’d never…” there should be at least five more that say, “that’s amazing….” But, there aren’t. There should be, but there aren’t. I know this because I keep my pill case in the living room, because that’s where I spend the most time. I’d forget to take my mid-afternoon pills, if I left it in the bedroom. So, it stays in the living room, where I write, read, and draw, and where I watch TV at night, with my husband. It’s tucked away in a corner, where no one really sees it. But, if it’s time for a med, a guest might take note of it. I see the judgement in their eyes, and sense the “ugh” in their faces when they see how many pills I have to take, the “I’d never do that,” in their exchanged glances. You probably would, my friends, you probably would. Don’t think for a moment that each pill hasn’t taken a small piece of my soul, of my dignity, of hope, because it has. But, I have had to learn to reclaim it, and be proud of living through it, and surviving.

 

Lessons From This Flare

Chronic illness comes with random “rewards” and things you don’t really think of. There’s lots of bits and bobs that you don’t imagine, that become a really big part of your life, when being sick becomes the biggest part of your life. Here’s a few silly little bits that I’ve noticed in the last few days.

“Random” Increases in the Credit Card Bill - During a Flare

When I have a pain flare, that crashes me in bed, or on the couch, I live in the world vicariously through Amazon, Anthropologie and Ulta (primarily, but not exclusively, of course). In other words, I imagine what I would wear, how I would wear my makeup, what fancy soap I might wash with, if I showered, and what I might read or do, if I moved more than a centimeter. I don’t actually use any of these items for weeks beyond the flare, but I damn well buy them, in anticipation.  

Most recently, I bought this thing. It’s a bit out of my comfort zone, but I’ve wanted to dare a wrap/kimono/poncho-type sweater thing for a while. I’ve given up on the idea that I’m too short, or too anything to wear clothes I’ve longed to wear. I’ve been watching the sales for one, and poof, finally hit a good one, at the right time. You always know you are getting something good when the model looks ambivalent, or even annoyed to be wearing the product. Bryon loves my sales-watching. It got me a $499 coat this year for Christmas for less than $150. I wouldn’t be able to dress the way I do without hawk-eyed sale-watching. The Anthropologie sale rack and I are very well-acquainted.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Thank goodness for a husband who tolerates my habit of pretending to be normal when I’m sick, and therefore spending very non-pretend money on presents for myself. When I’m not in a flare, I spend like a normal person; actually, I spend less, so it averages out.  They should make a rewards card that doubles points when you spend insane amounts, all at once, and then zero amounts later. In other words, I want rewards for being me, because I’m special. I’m a snowflake, dammit.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I guess I’ll have to make do with the Ulta rewards I’ve earned, so far, this year. I’m saving it for my next flare, so I can go bananas on randomly colored eye-liner that I’m only just getting brave enough to wear beyond the boundaries of my hallway.

The Appointment Line

The military health system is take-the-good-with-the bad.

And then you have....Tricare? Doesn't have a good ring.

And then you have....Tricare? Doesn't have a good ring.

We don’t have to worry about the ACA being repealed because the Cheeto-Elect hasn’t written a policy that covers self-tanner, prostitutes, golden showers and syphilis-prevention, but not abortions, or birth control, because damn, that’s amoral! Who am I kidding? He can’t write! But seriously, I'm so grateful for military healthcare, because we don't have to worry about it.

Anyway, the worst part, and I kid you not, this truly is the worst part of Tricare (at the moment), so I have nothing to really complain about, is that Tricare thinks it saves money to remind patients that they have pending referrals. An automated line calls you every three days with a recorded message, telling you that “the patient born on XX/XX/XXXX has an active referral and should make an appointment.” Because I have approximately a million specialists and two million referrals, I get calls every day (because they are staggered). Because Collin has approximately half a million specialists, he gets calls every other day. Ironically, their efficient system has no stop-gap measure to notify itself that the appointments have been made. It’s a very specific type of persistent telemarketer.

Guilt Over Random and Specific Things

I watched an interview with a millennial star, a young Justin Bieber-ish-Clone (I’m so old!) who thinks they are the shit because they do movies, make music, and are also trying to change the world, one Tweet at a time. He made me feel terrible because he talked primarily about how if we all just stopped using straws, we could eliminate some staggering amount of garbage, in landfills, every year.

The specificity that it was straws made me feel like the shittiest person in the world because, well, I use a lot of straws. Tilting my head backward, to drink hurts. “Oh, but Rachel,” you say, “you have an excuse, it’s okay.” But, do I? I feel like when we know we could do something in a gentler way, none of us has an excuse to do something in the worst way. That goes for anything from using too much trash, to simply being nicer to one another. Open a door, hand a pan-handler your change, thank your waitress, be kind.

With a severe lack of appetite, I barely eat as it is, so I drink a lot of smoothies. Know what doesn’t go down a regular straw very well? Smoothies. Bryon found these amazing, massive, use-extra-plastic smoothie straws! They are even more wasteful, but also even more awesome. The whole idea is so plaguing to me, I think of it all the time. So, I wash straws and reuse them for days.

What’s my point? When you are sick and have a lot of time on your hands, you both have the time and the energy to wash straws, and to care about washing them. You become vexed by stupid stuff, and then wondering if it isn’t stupid after all; in the long run, it’s the small stuff that adds up to changing the world. Damn straws!

While writing this, to add some links though, I found these. Stainless steel, reusable straws. Guess whose Amazon Prime account got some more activity today?

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Yep, got some. I even got some smoothie-sized ones.

Apparently, the no-straw thing is a big deal for the National Park Service, too. I always knew it was a no-straw zone, but learning more every day. Phew, you learn a lot when you’ve got time to care about things like straws. See, what I mean. Being sick comes with both, for lack of a better word, punishments, and perks.

Other Random, Disconnected Sick People “Perks” From This Flare

  • Sun Glare on the TV, but you can’t move because of pain, to either shut the drapes, or change angles. Alas, until the sun reaches its peak, half the television might as well be in shadow. Such a “first-world,” problem, a term I hate. A problem is a problem.  

 

  • I found a new perfume that I love from free-with-purchase Ulta samples. Taking “French” showers because both I stink, and my pajamas stink from lack of showering helps force you into the sample bags. Daisy, by Marc Jacobs. If you are curious, it doesn’t smell good when your son uses all of your samples, all at once, several sprays each. He did it about five days ago, and the bathroom still stinks. What’s the problem here? Daisy was over $80. It was a better deal to buy the gift set. Oh well, another present for me! I’m too old for drugstore perfume, right?

 

  • Running out Netflix shows. Theoretically, this is impossible; but, the reality is that indecisiveness is the actual problem, so I scroll, and scroll, until exhausted, I just stop on the first thing I see. Did you know that there is a whole section devoted to weird sex habits of the English? I didn’t. It was an accidental discovery on an incredibly misleading title. Now, Netflix thinks I’m a pervert, with a very specific interest in the sex lives of middle-aged Brits.

 

  • I’m home so often, that I can distinctly tell when someone has made a home, or auto-improvement that is “noisy.” For example, the mini-van down the street, has installed a very loud, and very piercing backup beeper, just in case its ever involved in a, well, there’s no way to finish that sentence logically. It’s a MINI-van. It doesn’t need a backup beeper. That’s insane. This is how I imagine the conversation about getting it installed going:

 

Female of Household: There’s lots of kids in this neighborhood, dear. I think a beeper would be a good idea.
Male of Household: Don’t you think it’s overkill?
Female: No...because....
Male (knowing he’ll lose anyway): Yes, dear
  • I’ve learned that Loki truly does like to lick your face. And your hands. And your eyes. And, he thinks he can fit his head in your mouth. To what end, I have no idea, but he’s determined to do it, every time I yawn, which with muscle spasms, happens a lot. I’m not sure what he hopes to find in there, but he’s a black cat, so maybe he’s looking for his soul. I should clarify that it’s really only my face, hands and eyes he’s interested in. We’ve bonded, which I can’t say that I hate. I love those darn animals, except that he likes to do his soul-searching at 4 am.
Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

  • My pajama radius has expanded to, pretty much, anywhere. And, it doesn’t matter what kind of pajamas I’m wearing. I used to put sweat pants on, if I were getting in the car, leaving the house, letting the dog out, or getting the mail. Now, I don’t care. I drive Collin to and from school in footie pajamas and a robe. I stand on my patio that way with Daphne. This flare broke me for good. Considering lots of my pajamas have hoods and tails, because they are adorable, you’ve got to be pretty confident in your game to let that radius expand. “Why yes kindly neighbor, I am wearing a kitty tail. What of it?” My radius is only getting bigger. For “How I Met Your Mother Fans,” I’m thinking this is similar to the underpants radius rules, which still stand firm, for me, at shower to closet.
Urban dictionary , keeping all of us old people from sounding like fuddy-duddies with the youths.

Urban dictionary, keeping all of us old people from sounding like fuddy-duddies with the youths.

Last Withdrawal?

My last surgery was in June. Yeah, we all basically know that. Because of how sick we didn’t know I actually was, I was on a lot of painkillers before my operation. And, because my surgeon, who is both amazing and sadistic, wanted me off all pain control pre-op, I had to go through withdrawal. Don’t worry, I won’t pull out my trusty soap box to proclaim the differences between addiction and dependency, yet again. However, learn them, know them; and, don’t be a butt-head.

For the surgery I just had, the one that made me bionic woman with a titanium plate in my head, my surgeon is usually pretty conservative with the post-op pain control. He generally sends his patients home with 90 Vicodin and a pat on the back. For me, a patient that went in having just previously been on Fentanyl, being sent home on only Vicodin would be the equivalent giving me a bag of M&Ms, and being told to think happy thoughts.

If you don’t know what Fentanyl is, it’s the drug that the media loves to talk about because it’s killing junkies left and right, especially in cow towns. It’s about 100-times stronger than morphine, and it’s given to pain patients and very, very sick people who are already opiate tolerant. If you take it without being opiate tolerant, it can kill you. It’s not designed to be cooked down and injected, hence the deaths. Imagine that! I wore my pain control patches on my arm, as prescribed, so I never died. Funny that, using drugs as prescribed.

Alas, because of the Fentanyl, and the fact that I’d only just gotten off morphine and oxycodone, my tolerance was too high to send me home on just Vicodin. So, my post-op meds were very high too; consequently, coming off has been a long, slow process as well. I have been taking my sweet-ass time doing it. Not because I want to, but because withdrawal sucks, and it’s uncomfortable to go quickly. If you cut a dose every couple of weeks, you feel nothing. If you cut a dose every other day, you feel like you got hit by a freight train.

I’m down to my last drug, oxycodone. I hate it. I’ve been on it the longest. And, I have been refusing to let it go, refusing to come down a dose for a while; not long, just an extra week or so. Then, it occurred to me what I was refusing to do. I was refusing to admit that I was afraid to give it up, not that I was afraid to withdraw. I wasn’t afraid of the actual withdrawal; that’s ridiculous. It just took me a while to realize what I was afraid of. 

I feel roughly okay right now. I’m not great, but most days, I’m tolerable. I have some days that border on good, or even great, even normal. I have some bad days, of course; but, most days are pretty decent. I’m afraid to upset the apple cart. What if changing this last thing is the thing that wrecks me? What if it sends me spiraling backward? And, even though I didn’t want to admit it, a small part of me was afraid that taking it away wouldn’t change anything at all, and I would still be normal, even good. What would it mean to be better? I don’t know how to be better anymore? Help!

When you spend as long as I have, as sick as I’ve been, you become locked in a constant state of fear. You are waiting, constantly, for the next time you’ll be thrown back into bed for a week, maybe more. You’re afraid to make plans, make commitments, even to your son and husband, for fear of cancelling. It’s why depression can set in, because it’s hard to move forward, knowing that your life is irrecoverably changed. Most days, I can stuff that down and charge forward, but some days, it gets the better of me. I was afraid that taking it away would be the thing that made me sick again. It was irrational and stupid.

I was holding onto the oxycodone as a life-ring, which is a dangerous game. It’s especially dangerous for someone like me who will need to continue to use this medication in the future as a pain control measure for sporadic, but not daily, use. I have to have a healthy relationship with medication. As soon as I realized it, it had to go. Now. Not tomorrow, now. My therapist thinks I’m being too hard on myself, but I’m overly cautious when it comes to these things, I guess! It feels weird to admit this aloud, but it's an honest look at chronic illness, right?

So, I set a goal of thirty days, which is coo-coo banana-pants insane. My doctor likes me to take at least four days per step down in dosage, and each step down is very, very small. This protects my body from the worst symptoms of withdrawal. My body tends not to start to notice a change until day two or three, then I stabilize at day four or five, and then I can drop a dose again. Over countless cycles and changes in meds, we’ve learned that I do best when we change doses at about every 7-10 days, rather than 4-5 days.

Mathematically, it’s impossible for me to make my goal, by reducing every 4 days. It’s also impossible, if I reduce every 3 days. It’s also impossible every 2. My goal is to show up to my appointment on January 2nd, down to almost nothing, or nothing at all. These goals are pretty rough on my body, because in order to accomplish them, I have to move at a rate of, at least, 2-3 days per dose drop. This doesn’t give my body a chance to stabilize, and I’m in heavy withdrawal, constantly.

In case you’ve ever wondered: body aches that feel like the worst flu you’ve ever had, runny nose, exhaustion, anxiety, moodiness, sweating, shakes, twitching, nausea, lack of appetite, cramps EVERYWHERE, heartburn. I started about ten days ago, and I’ve already lost five pounds. Best and worst diet in the world!

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Last night, right before Bryon carried me to bed, AFTER I fell asleep whimpering. He got me to eat a handful of buttered noodles, but halfway through I tore my clothes off, right in the middle of the living because I was both, burning up, and feeling like the fabric of my clothes was tearing at my skin. Then, I put them back on because I was cold. I finally fell asleep like this, huddled in a ball to stop the cramping in my muscles. I am so sleepy because a lot of the meds that help with the symptoms of withdrawal make you really groggy: muscle relaxers (cramping), Clonidine (thank god for Clonidine - but I challenge anyone to stay awake on two of those - for the anxiety) Benedryl (for the nasal congestion and overall ick), Zofran (for the barfing), Zantac (for the excess stomach acid and heartburn), Immodium (if you don't know what this is for, I feel badly for you because you've had some embarrassing situations).

Still, if you want to see me do something? Tell me I can’t. I’ll let you know in twelve days how I did. I can promise you that I’ll have made it. As much as I hope this is the last time that I ever have to go through withdrawal, I am sure that with my stupid brain and skull, it is likely that it won’t be.

Ten Things I Miss

As I go through my usual days now, I’m often met with the idea of “I miss when I used to…” and fill in the blanks. Like, I miss that I used to be able to blow-dry my hair easily; and now, I rarely do, because the nerve pain in my scalp makes it way too uncomfortable. There are a lot of things that being sick changes in your life, and most of them you adapt to, without even realizing it; they just become part of the new you. And then, suddenly, one day, it creeps up on you, that your whole life is different.

That’s what being chronically ill is about. There are, literally, countless changes to my life. Some of them are good: I get to be home with Collin. Some of them suck: I lost connection with a career I loved. But, the important part is being able to accept and work around the changes as they come; because if one thing is for sure about chronic illness, is that it doesn’t ever stay the same.

Chiari, for example, doesn’t ever stop changing or evolving. Something people don’t generally recognize is that all the time that I spent undiagnosed, was time that my cerebellum was sitting outside my skull. That’s time that my spine and the back of my brain were being crushed by the pressure of being squeezed out of the teensy-weensy space of the hole in the back of my skull. That causes permanent nerve damage, the effects of which we can already see, and which will only continue to develop over the rest of my life.

Plus, my neck muscles were sliced through, all the way, and spread apart like a curtain, at the base of my head, twice. This means that my head, which is very heavy (didn’t we all learn, in the 90’s what the human head weighs?),

 

…is often unsupportable by those, severely weakened, muscles. If I sleep wrong, if I’m tired; or, even if I just had a rough day, I have to wear a hard cervical collar, for the rest of my life. It’s akin to having had a broken neck. These aren’t minor things. These aren’t, “oh, you had your surgeries, so you are better, now right?” things.

I was looking over the last few posts and it occurred to me that I was missing the point of what I’d wanted to do with my blog. One of the goals was that I wanted to educate what it’s like living with chronic illness. At first, it was about being sick, and how it hurt to be bullied because of it, and with it. But then, it got to be about nonsense. I was hurt by some mean girls. So what? It’s like wild kingdom, right? The different girl might as well be the gazelle that gets picked off by the whispering, back-biting girl lions. But, who cares? I didn’t die. I hobbled off and lived to say, “fuck you; you didn’t kill me.” And, it bugged the shit out of the lions. So, enough said. Leave it be. I missed my purpose by letting them bother me more, and letting them continue to pick at the gazelle, who wasn’t a carcass.   

So, I’m going back to my purposes: educating and looking into life of chronic illness! Last night, while I was up, at 2 am, sitting on the pot, for FORTY minutes, I got to thinking about this list:

 

Top Ten Things I Miss About Healthy Rachel

 

Being Able to Pee

That had to be number one, right?  After lots of testing, and still more to come, we are pretty sure that my pee issues are nerve-damage related. By the way, I’m very much looking forward to a scope going up my bladder; I hear it’s really fun. Is it? I love my urologist because he’s the perfect mix of good doctor and silly goose. I like the silly goose part. The last time I was there, he said to me,

 

“Imagine your bladder is like a little child; it’s having baby tantrums.”

 

Then, he balled up his fists and made waah-waah faces. So, the bundle of nerves at the base of the cerebellum control a lot, including bladder function. It could be worse; I could be incontinent. Instead, despite having to go really, really badly sometimes, it can take me 30-40 minutes to convince my muscles to get in line and let it happen. You’ve never seen anything until you’ve seen a grown woman jumping up and down, on the toilet, trying to convince her body to release the pee!

Grr. Hulk. No. Cry. No. Happy.

I can’t always easily regulate my emotions anymore. Symptoms associated with chronic illness include depression, or mood swings. It’s pretty normal to be depressed about your whole life changing, without your permission. But, more than that, when someone physically alters a portion of your brain, that comes with unusual side effects too. Oh, and PTSD. I get severe anxiety seeing doctors now, and meeting new ones, for example. It’s taken me a long time to work out, and work with these changes. I love my therapist. She’s the bee’s knees, and without her, I don’t know how I’d have figured out a lot of things, and made some pretty sweeping changes to my life.

People don’t totally understand things like this; and it’s very difficult for people not close to you to understand; and it’s easy for them to rush to judgment. Oh, she’s crazy. Oh, she must need help. What do they mean by “help,” when they say that, anyway? Fuck those kinds of people, frankly. If you’re the kind of person who tells a brain surgery patient that she’s crazy because she’s having a bad day dealing with her ongoing health issues, which include mental status changes, then you are probably the one who needs help; and you are a meanie.

Let's say this as CLEARLY AS POSSIBLE: Brain surgery is a type of TRAUMATIC BRAIN INJURY.  This is not just an appendectomy; it takes YEARS to recover from. I’ve had two, in a single year. If you met a soldier, hit by an IED, and he was a little teary-eyed one day, and then a little bit easily frustrated the next, would you push him around and say, “ugh, he needs help!” Umm, no. Because he has a traumatic brain injury. Same diff, folks. Same diff. Let’s get that right on the table, and stop being nasty to people with traumatic brain injuries; let’s recognize that it FUCKS with your mind.

Sneezing

Well, I still sneeze. Everyone sneezes. Imagine if someone claimed never having sneezed. It sounds weird; but, my grandma claims that she’s never, once in her life, had a single headache. How that’s possible with having had five children I’ll never know! I know that some ladies pee when they sneeze, especially after they’ve had children; maybe I should look into that and then I could pee more easily. But, sneezing is a Valsalva Maneuver. Normal people use a Valsalva Maneuver to equalize pressure in their ears. People with intracranial pressure issues can’t perform Valsalva Maneuvers without extreme pain. When I sneeze, I don’t get that, “oooh, that felt good,” sensation that everyone else gets. I get that, “shit, how did I survive that,” feeling. So, my sneezes sound like this: “aa-choo-aaaaaaoooooowww!”

 

 

Bending Down

This one shouldn’t bother me, so much. I guess a lot of middle-aged women don’t bend at the waist, especially based on the obesity rate in America! But, I used to be fully capable of bending. I still am, but it hurts. Blood and cerebral spinal fluid flows around a Chiarian’s brain and skull a little differently than around in a normal head; so, if I bend down, “timberrrrrr!”

 

Not Knowing About Passing Out

Did you ever wish you didn’t know something? There’s lots of things I wish I didn’t know, or wish I could unsee

 

Don't you wish you could unsee this? I know I do. Illma Gore made this "awesome" painting, and since had to hide from numerous death threats for giving him a (probably accurate?) micropenis.

Don't you wish you could unsee this? I know I do. Illma Gore made this "awesome" painting, and since had to hide from numerous death threats for giving him a (probably accurate?) micropenis.

I wish I didn’t know what it felt like to pass out. It happens occasionally, because of Chiari. It’s one of those things. It’s better to go along, blissfully unware, I think. It’s not the passing out that’s the bad part, really; it’s the waking up, and seeing that you scared the people around you.

 

Speaking of Knowledge – Mortality

I think everyone has a vague sense of their own mortality. We all know we’ll die. We all know that we won’t live forever. But, there’s a big chasm between that knowledge, and the sense of clarity you get when you are being wheeled back for someone to touch your brain. The first time, I wasn’t afraid, not until two minutes beforehand, when suddenly it occurred to me that how would Bryon really know that I loved him the way I meant to express it. What if I died? I kept shouting to him, all the way down the hall, until they knocked me out, right there, because I was hysterical. There’s a kind of terror in that feeling that can’t be expressed in words, a horror in knowing not that you might die, but that there’s no true way to make sure your loved ones know you love them. We use all that greeting card bullshit to say that telling them, and showing them works; but, when you are there, facing it for real, you suddenly realize that your heart is deeper and more full than you’d ever known. There’s no way to ever fully express what’s in it; and that’s the most horrifying part of mortality.

 

Lifting Anything Heavier than Homer

Technically, I’m not supposed to lift anything heavier than five pounds still; Homer weighs close to fifteen pounds. Some Chiari patients take the “restriction” idea way too far, and believe they should treat their body as if it's made of glass. Surrounded by pillows. In an acrylic, protective case. On the no-touch shelf.  I think it’s safe to say that some Chiarians are a little too skittish. Sure, I can’t ride roller coasters, or go to the chiropractor, mostly because I could become internally decapitated far more easily than you; but the thing that bothers me right now is that I may not ever be able to lift weights again. Any strain, even just a big bowel movement, can cause my cerebellum to herniate back out of my skull. Because I have a titanium plate, I can strain a liiiittle more than some others, but not much. I love weightlifting; I love it so much I wasn’t even a little embarrassed the last time I got a PR at the gym, and a little fart escaped. Them’s the breaks when you are working hard. Okay. I was a little embarrassed. But we all fart, right?

My Hair

I want to wake up tomorrow, and have it all be back. I know I should just feel lucky that it’s hardly noticeable; but, I don’t feel lucky. I feel mad. In most cases, my hair just looks thinner than it normally would; but, if I pull it up in a bun, there’s the bald spot, or the scar. I want my hair. I want it now. To claim that hair isn’t an integral part of our identity is to lie. Look at all the cancer patients who shave their heads defiantly in advance of chemo. Shannen Doherty just made the news for doing it. There’s nothing like looking at yourself in the mirror, and seeing such a drastic change that you didn’t perpetrate yourself.

Sleeping

I still sleep. But, I am still on a lot of sedating meds, so the sleep I get isn’t always restful and restorative. I miss that. I miss waking up refreshed, instead of still exhausted, because I’m still a little sedated. You know how when you wake up, you stretch, yawn, and feel ready for the day? I wake up, stretch, yawn, and want to sleep for another twelve hours. Literally.

Not Knowing that Vile People Exist

I’m sure you think this is going back to bully, icky people. It could, but it isn’t. I have been working on a side project for a long time, a book. So, I spend a lot of time observing online Chiari support groups. I wish I didn’t know what happened in online groups, and how bad they are, in general. I’ve seen death threats, and a man driven to suicide because of online taunts. I’ve seen women tease a mentally ill man into running away from home, only to be found by police, weeks later, then claim innocence. I’ve seen sick children lose access to mere pennies of fundraising monies because people harass their GoFundMe site with enough comments to shut them down. I’ve seen brutality that would make your head spin. It’s enough to make you question your faith in humanity. I wish I didn’t know this. I wish I could pretend that I believe, fundamentally, that all people are good; but, it’s too late for that now. I have to know that there are some bad people out there. Truly bad. And, the worst part of all, is they think they are good people; or, they pretend they are good people, especially to themselves.


Being sick is not like a hat that I can take off. It’s a part of who I am now, like being a mom, or being a wife. But, it’s also not something that I like to make the center of my day. I try to arrange my life so it’s not a priority, so it doesn’t interfere. Usually, it’s not a “thing;” but sometimes it pops up and is a pain in the ass. If you spend time around me, I’m not talking about Chiari, ever, unless I’m asked. I’m not one of those people who never shuts up about it. Ugh. The horror. Actually, I think it might be worse to be one of those people who never shuts up about her kid.

 

Bonus

I miss having just one doctor. Or no doctors at all, really. Remember when you went to the doctor because you had a sore throat, or a fever? Or, rode those things out? I have a dozen. In LA, I have over a dozen, that I need to see on a regular basis to manage my condition. There’s MRIs to update, images to review, bloodwork to check, medications to manage. It’s a constant battle of appointments and calendars! Think it through, and count how many doctors you have. I bet it’s less than a dozen.  

 

You Cannot Have My Soul - I Made Pillows

I have lots to say about Comic Con, and about all kinds of geeky happenings of late. But first, I want to talk about these pillows. Boring, I know. Bear with me. I have a point. I always do, you know.

I made all of these throw pillows in the last 18 hours. I have been a throw pillow machine. Why? It’s the only thing in my life that I have any control over. And even that, this afternoon, has failed. We ran out of stuffing, leaving my last pillow unfinished. Fuck.

Last night, it occurred to me, bleary-eyed, as I was determined to finish one of these goddamned things, that being sick sucks your soul. It takes away all the bits and pieces of you, until there’s nothing left, and you grab onto random things, and fight for them, for tangible, random things to hold into the air and scream “you can’t have this too!” about. Yesterday, it was pillows.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Now that I’m all in the “recovery” phase of the second surgery, and things are looking up, fate decided that it wasn’t okay to leave me the fuck alone. I’ve been feeling like shit for months, specifically, in my bladder. I’ve been having an increasing amount of difficulty emptying my bladder. I’ve had several UTIs because of it, and now, it looks like I have either kidney, or bladder stones. The doctor is very concerned, and frankly, I am too. I can’t tell you how much it hurts. Considering that I’m still heavily drugged from surgery, and I’m doubled over sometimes, I can tell you that it’s wildly unpleasant.  

I’m being scrunched into a urologist’s schedule tomorrow, and I’m terrified. I’m terrified of the same things I was terrified of when I started my whole Chiari journey before. I’m scared of finding out that I’ve got run-of-the-mill stones; I’m terrified I’ve got something worse; but mostly, I’m terrified I’m in excruciating pain and there’s no immediately detectable reason.

For as “healthy,” and as good as I supposedly look right now, remember that I’m healthy comparable to where I was six, or eighteen months ago. I still need twelve to fifteen hours of sleep a night. I still nap nearly every day. I can’t work. I can’t pick up anything heavier than my cat. I can’t concentrate long enough to read anything more difficult than a young adult novel. I can’t exercise more than twenty minutes at a time. I’m making peace with how slow that recovery is, and what the cap is on how far it might ever go.

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

So, to have another blow, another thing added to the pile was too much to bear yesterday. Yeah, I know that something like this is something that anyone gets. I get that. But, the reason that I probably got it? A drug that I have been on since I was about 20, for migraine prevention, in varying doses, ranging from high, to super high, can cause kidney (or bladder) stones. So, do I have a lifetime of side-effects from being sick, to expect? I mean, that’s what happens, isn’t it? First, you get sick, then you get sick from being sick, right?

The thing is, when I spent about three hours raging and crying, it wasn’t for me. I didn’t shed a single tear for pity-party me. I was mad at how this fucking thing affects everyone and everything around me. It’s more time off for Bryon. More doctor’s appointments. More procedures. More anesthesia. More time that Collin watches me suffer. More appointments. More specialists. More time that we have to tell family that “Rachel is too sick to come to that family thing,” and hope that they don’t judge Bryon for being married to a piece of shit drama-queen.

So, I made pillows. Collin and I had picked out some fabric a few weeks ago because he’d been fixating on sewing. The thing about his autism is he fixates, sometimes for very short periods of time, and goes bananas for random things. A few weeks ago, it was sewing; so, we took him to JoAnn’s and let him pick out fabric for various projects, which he promptly dropped. I’d planned on doing pillows with this particular fabric, for our bedroom; but life, and his other, newer fixations, got in the way.

After not only urgent care, but an ER visit and a visit to my family doctor, my bladder really got bad yesterday. I don’t know what possessed me to feel like making the pillows would make me feel better; but, I was not going to go to bed until I finished a few of them. I insisted that, while being sick was going to take my job; my pride; my hair; and now my ability to fucking pee; I wasn’t going to let it take away my ability to make this pillow, right now. And yes, I knew, even then, how stupid it was.

So, I stood there, because it hurt to sit, and I made pillows. I made two last night, and two today. I made another one too, but I ran out of stuffing. It was like a mission. I couldn’t stop until I was done. I was in agony half the time because my bladder hurt so badly at times that I could barely lean; but, I got them done.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in  The Golden Girls.  I think they look pretty okay with the plain bed, anyway.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in The Golden Girls. I think they look pretty okay with the plain bed, anyway.

God damn it, I refuse to give up. Take a piece of my skull, take it twice. Put rocks in my bladder. Do what you will to me. Unless you are planning on killing me, I will win, even if it means that I have to waste a day crying, and then making fucking pillows to get my soul back on track.

My Meltdown

I was a monster last night. A terrible, horrible, no-good monster.

I warned Bryon, despite the fact that he rushed in the door after working late, and stopped at the pharmacy on the way home to fill my myriad of prescriptions, that I was in a foul mood, so he’d better avoid me. Unfair, I know. I warned him that I had no reason to be in a foul mood, but I was in one, anyway.

I was irritable. Everything my darling son was doing, or saying, was making me crazy. His breathing was making me want to move to China. My own skin was making me question why we have skin. I hated our couch, our rugs, my pajamas. I hated my dinner. I hated my hair.

Oh! that’s right! PMS! I don’t mean to be “that” woman that sets women back twenty years, by blaming a bad mood on her period, but I’m pretty sure that’s what was going on. See, the day was going “fine” right before that. Sort of.

The Sweat

I had an appointment with Collin’s social worker earlier, which had gone “okay.” He’s being evaluated to see if he qualifies for ABA services. It’s a long process. We’re on our fourth in-home visit, and our fifth is scheduled for next week. She thinks we will qualify (thank goodness); so we’d gotten good news. But, I don’t love her. I think she’s a little...meh. She’s not warm and fuzzy. Thankfully, she’s not going to be who sees him, just who evaluates his needs. The thing that put me in a bad mood from our little session was that I have to go meet her at the gate, thanks to the fact that we’ve been at a heightened security risk for approximately forty years (is it really heightened security if it’s always heightened, I ask you?). It was hot, so the walk back and forth caused me to start sweating like a pig; I spent the first ten minutes of our session, wiping sweat from my face, with napkins, pretending it was some kind of dainty thing that normal people do. I tend to be a sweaty person, in general, and it embarrasses me. Usually, I wipe my face and pretend it’s no big deal, but today, it embarrassed me enough that later, I cried. Plus, I’m worried that this semi-cold woman isn’t going to approve us for therapy and we are going to screw up our kid. Cry.

The Jay Leno

Oh my God! That's a terrifying picture! But, I promised and unfiltered look at my life, didn't I? Well, that's me, isn't it? At this point, I'm all, "Maybe, this constant drying mask will work." Bwahahahaha! I wore that stupid thing almost 24-7 for days and days. Nope

Oh my God! That's a terrifying picture! But, I promised and unfiltered look at my life, didn't I? Well, that's me, isn't it? At this point, I'm all, "Maybe, this constant drying mask will work." Bwahahahaha! I wore that stupid thing almost 24-7 for days and days. Nope

I also spent much of my day trying to tend to the new chin I’m growing. I’m hoping to be able to donate it to a child, in need of a chin. Is there a program, like locks of love, where you can lob of body parts you are growing, like that? Really, I have a cyst. It rears up a few times a year, huge and painful. There’s not really anything I can do about it, except complain. This time, I tried a new approach. I didn’t fuck with it. Much. Most of the hideousness of the damn things comes from the squeezing. So, I didn’t squeeze. I put a mask-type thing on it; I put the prescription cream on it; I put ice on it. But, after about a week, I started using a needle dipped in alcohol to try to take some pressure out of it. I kept it really sterile, wiping my face constantly, as pounds of puss drained out in rivers, tainted with blood. Bryon backed out of the room slowly, shocked at what was coming out of his wife, horrified that he was married to a beast.

Still not gone... Homer is suspicious that he will have to adapt to a new member of the family. By the way, do I look tired enough? Also...this is what a person born without eyebrows looks like before she puts makeup on. It's scary, right? No, I don't, or didn't pluck them that way. I've never, ever seen, or used tweezers, IN MY LIFE! Born this way.

Still not gone... Homer is suspicious that he will have to adapt to a new member of the family. By the way, do I look tired enough? Also...this is what a person born without eyebrows looks like before she puts makeup on. It's scary, right? No, I don't, or didn't pluck them that way. I've never, ever seen, or used tweezers, IN MY LIFE! Born this way.

In ten days, it’s shrunk from the size of a mountain, to the size of a small hill. I’m still debating if I should go to the doctor to have it properly drained and packed, once and for all. At least, this time, I’ve not made my face black and blue with all the squeezing that I normally do. It looks like a large mound of flesh that shouldn’t be there, capped with a weird little scab. Nancy greeted me with, “did you get hurt? Are you okay,” instead of with the awkward, look-away that most people do when you have a giant blemish the size of a cantaloupe on your face. So, I must be doing something right with it this time, that I looks like an “injury.” Still, it makes a girl self-conscious. So, add it to list of reasons that I cried.

Bessie

Add to that, the fact that my bloated belly was hanging over my stretchy pants yesterday. I haven’t been able to work out, obviously, since my surgeries. This has made me, a little, shall we say, doughier, than normal? Most days, I can handle my new physique. Other days, I’m convinced I have cankles (p.s. explaining to Collin what a cankle was, yesterday, was the bright spot of my day) and that I have arm-fat when I wave. I am only allowed to walk, and now, officially, allowed to do the elliptical, sans arms. I am also allowed to do Pilates without neck or head movements. It is very restrictive, as you can see. The restrictions come off very, very slowly. It’s clearly, very hard to get my butt in shape. Literally, my butt.

I catch myself doing squats, or deep knee bends in the shower, or while I’m stirring eggs, thinking, every little bit helps. But, on the other hand, I figure, why the hell should I bother anymore? So, yesterday was one of those days that it all crashed down and I figured that I was a whale. I’m not. I’m normal. I’m probably skinnier than normal. But, I felt horrible about myself. So, add another reason to the list of why I cried.

I’m Medusa

Plus, oh yes, there’s more. My medication messes with my appetite, and it makes me generally unhealthy in every way. So, my hair is like a bedraggled, dry mess. It means that I have a bad hair day, pretty much every day. When you get sick, you realize just, exactly what defines you, as you, because one-by-one, things get taken away. For me, I have lost so very much, and I’ve started to hang on, desperately to “last things,” like my hair, as my identity. As it clings, lifeless, limp and frizzy, to my scalp, day after day, sometimes, and it looks like crap, it makes me realize how much I’ve lost. Most days, like with the weight, I can shake off how bad it looks, put it in a ponytail, and realize that I can try something new again tomorrow: a new shampoo, a new curling iron, a new conditioner. But other days, it’s all too much. So, another reason I cried.

I’m Useless

There’s more. I’ve been painting a lot. I’ve got several really good ones socked away. At least I think they’re good. My husband tells me so, and he’s totally unbiased. Ha. He’s been encouraging me to stock up more, and start a way to sell them, like a “real” artist. He’s not just trying to stack up income, he wants me to feel vital, the way I was when I was working, and he knows that being able to say that I’ve sold something I created, would do that. I know where his heart is, and it’s a beautiful thing. He suggested an Etsy store, and I thought it was a good idea. We scrolled through some of the listings there, and some people have amazing stuff, and others, well, others make TONS of money like this.

I think anyone who paints or draws has a modicum of talent, but this woman inspires me to actually start an Etsy store, because, well, if she can, I can. This painting, in particular of this woman's speaks to me so much, I'm tempted to buy it. What is she trying to say with it? What's her message? Are all animals one in the same? Are owls also pigs, and therefore flowers? Is all nature,  all  nature?  

I think anyone who paints or draws has a modicum of talent, but this woman inspires me to actually start an Etsy store, because, well, if she can, I can. This painting, in particular of this woman's speaks to me so much, I'm tempted to buy it. What is she trying to say with it? What's her message? Are all animals one in the same? Are owls also pigs, and therefore flowers? Is all nature, all nature?  

I’ve got to fit somewhere in the middle. I'm not saying she's stinky; really, I'm not saying that at all, she's got some crazy amount of positive reviews. But, what I'm saying is, if there's room for that kind of style to be appreciated so heartily, there's got to be room for me, right? It’s not a crazy idea, anyway. It put a little light in my heart, to imagine that even one person would pay a few dollars for something that I created, put it on their wall, and it would make them happy.

Anyway, a few days later, someone casually made a remark about housewives who do various non-contributory things, such as MLM, selling junk like eyelashes, makeup or kitchen products, claiming to “own their own business.” Off-handedly, a friend joked that these women also do things like start Etsy stores to sell junk. This obviously stung a bit. She’d no way of knowing what I had been thinking, and I know she didn't mean anything by it. I said that I had been thinking of just such a thing. Bryon defended my idea, of course, man that he is. But, add that to the list of reasons I cried.

So…

I was a mess. I cried for about an hour, I think. These things sneak up on you. Feeling fat, feeling hideous because of an extra chin, feeling useless, feeling like your hair will never be pretty again, feeling like you’re a sweaty monster and your son might never get ABA therapy because you say the wrong things, and feeling like a terrible mother because your child’s breathing annoys you….these things are the worst.

Then, your “terrible, breathing-monster” son hears you crying quietly, and crawls into your lap. He doesn’t care why you are crying, just that you are. He gives you his monkey because, “you need it more than he does right now,” and he lays in your arms until you stop, all without a word. When he thinks Daddy is taking too long to notice that you are crying, he screams for him, as if it’s an emergency that you are crying, “Daddy! Mommy is CRYING here! What are you doing that is more important!? Get over here!”

I liked the boy’s approach better, frankly. Daddy, realized it wasn’t an emergency, that a PMS meltdown can be put off, can be ignored because I’m being crazy; but, Collin realized that that none of that mattered, tears need comfort. Bryon is amazing, in every way, and he came to comfort when he was summoned. But, that boy had it right. I’m grateful for them both.

I woke up today still feeling fat, still with a big cyst, and still having frizzy hair. But, I woke up also remembering good things. I have an article going live today that I’m really proud of. Remember that blog post about the goodbye letter I didn’t write to Collin when I went into my surgeries? Well, a parenting website decided to publish it (I'll put the link when it goes live), and I’m getting paid for it! Hooray. I finally found a Wonder Woman Barbie I’ve been wanting forever.

I had to pay over twice retail for it, but oh well. If stupid Mattel decides to release it again, and I can buy it retail, I’ll scalp someone else for it too. Give and receive, right? I have finally started another painting, and it’s coming out nicely. And, we leave for Comic Con tomorrow; by tomorrow night, I’ll be sitting in the Invisible Jet to have my picture taken! Can’t get better than that.

This makes me happier!

This makes me happier!

I also woke up with heartburn. This might be unrelated.

Stupid Shit People Say to Sick People - Side Note: Stop It!

There are lots of lists like this floating around on the Internet. Every chronically ill person on the planet has a log of them, in mind. Why not add my list to the pot, of totally asinine things that I've actually heard people say, to me, since I've been diagnosed.

Let's just call this a public service warning: DON'T SAY SHIT LIKE THIS TO SICK PEOPLE. WE DON'T LIKE IT.

Things TO say: I'm so sorry that this has happened to you? What can I do to help? or, I don't totally understand what's going on, or your diagnosis? Please explain.

Yeah, that's about it. If you want to help, ASK HOW. Otherwise, shut the fuck up. Chronic illness is super complicated. One system shuts down another, which shuts down another. It's like dominoes. And, it never, ever stops. So, you don't know shit about what's going in in their bodies. Oh, and then depression sets in, because their life fucking sucks. Chronic illness ruins people. It takes everything away, bit by bit. Sometimes, it gives back, slowly; but it's very slow.

We learn to pull ourselves out of it, and we put on our big-girl panties after a while, but it sucks. It gets easier sometimes, and tougher others. But, you don't know all of that because you are outside, on the periphery, unless you are their immediate family. So, don't add to our difficulty, unless you plan to help, by saying these bullshit sentiments (or offhand comments) that you find below. These suck. They can ruin our day, if we are depressed, or on the edge of it.

LIST OF STUPID SHIT PEOPLE HAVE SAID TO ME

My kid is adorable, right? The headphones he wears for sensory overload work pretty well on-point for the message here: shhhh. I have a pair too. Not for people, but because our neighborhood is REALLY freaking loud. Anyway, shut up. Or, be nicer to not just sick people, but overall. We get that you are  trying  to be nice when you say this stuff; but hey, try harder.

My kid is adorable, right? The headphones he wears for sensory overload work pretty well on-point for the message here: shhhh. I have a pair too. Not for people, but because our neighborhood is REALLY freaking loud. Anyway, shut up. Or, be nicer to not just sick people, but overall. We get that you are trying to be nice when you say this stuff; but hey, try harder.

  • You’ll be all better soon
     
  • I bet you’d (or you’ll feel better) once you stop taking some (or all) of those meds
     
  • Have you tried this shake/diet plan that I sell (or my friend sells)?
     
  • Have you tried essential oils?
     
  • Massages really helped my sciatic problem; I bet you’d really feel better if you tried it. I know a guy!
     
  • If you just ate more organic
     
  • Damn GMOs. Monsanto is everywhere, you know?
     
  • Ugh, vaccines. I wonder....
     
  • You’re not handicapped! Why are parking there! I should report you!  
     
  • Good thing you are having this next procedure then, it will all finally be over soon!
     
  • I bet that this next doctor will fix everything!
     
  • You think you have problems concentrating! Brain damage? Believe me, I know! I have a two-year-old!
     
  • Don’t you ever get tired of being sick?
     
  • I don’t know how you do it! I would probably just kill myself.
     
  • I’m so amazed at you. You are such an inspiration!
     
  • Wow. It’s, like, just amazing how you can, like, even get dressed in the morning.
     
  • Are you sure you need this next surgery? Seems like you're not even really sick? I mean, you seemed fine yesterday.
     
  • I know how you feel; I once had like, this really bad headache too. Have you tried Excedrin Migraine?
     
  • I don't know....in my medical experience, generally, when the brain protrudes out of the skull and crushes the spine, it only causes pain when it is out of the skull at greater than 5 mm. Yours is slightly over 6mm, close to 7mm, so it should only hurt a little bit. Your complaints of extreme pain seem out of line with the measurement I see on the MRI. 
     
  • I’ve never heard of what’s wrong with you, are you sure that’s a thing?
     
  • I think my mom’s sister’s uncle has that. That’s with the toes, right? Wait? No. The arms? No. hold on, let me think. No….I have it! I’m sure of it. I think it’s the head? Yeah, I had this real bad headache once, and they even gave me an injection, and they said I had this thing. It was real bad. I must have it too! I totally get it.
     
  • Memory problems? Tell me about it! I lose my keys all the time! I’d lose my head if wasn’t attached!
     
  • I know it's frustrating that you can't read Tess of d'Ubervilles, but don't you feel lucky that you can still read at all? I mean, lots of people can't read at all.

I have been doing a lot of therapy, to prepare for my next surgery. I have a lot of anxiety to deal with about it. Some of these things, I'm learning, are just that people don't know what to say. Okay. So, then don't say anything. As someone with a lot of new anxiety, I've learned something: shut the fuck up. So, I have been a lot quieter. I am very familiar with foot-in-mouth disease. I suffered from it for 36 of my 37 years. You know what's happened in the last year or so? I've offended far fewer people. If you don't know what to say: listen more, talk less. If you really don't know what to say, but feel you must say something, ASK a question. Sick people love to answer questions about their condition, or how you can help. Just phrase it nicely.

The other thing I've learned is half the things people say are really just to mitigate their own discomfort. Dude, I'm sorry that you are uncomfortable that I'm sick. Get over yourself. If you've got a sick person in your life, and you are uncomfortable, stay away from them. Do them, and yourself a favor, and don't bother them, until you can figure out a way to communicate with them. You are hurting them, more than helping them, if you continue to say this crap. If they aren't calling you, or talking to you, it's because you are continuing to say this nonsense, every time you speak.

Consider this Lesson #1 on how to communicate with sick people. It's still Spring Break (or Brake, as my former students preferred to spell it) out here. Off to go party with the 9 year-old...which means, going to see if we can count some whales, migrating off the coast of this place. Professor Rachel Out :)

Hope we don't get lost. According to season 2 of Wonder Woman, it's in the Bermuda Triangle.

Hope we don't get lost. According to season 2 of Wonder Woman, it's in the Bermuda Triangle.