The Answer to the Dots: Derm Weighs In!

I took my crazy Rachel body to the dermatologist’s this morning, in order to ascertain what the fudgie-the-whale is going on with my weird leg spots. Thankfully, my husband was able to take yet another morning off, despite it being another week of his new faculty orientation. A side note about that whole thing is how silly the military is about some things: why is he having to spend weeks orienteering himself to a campus at which he just spent his last full year? I’m pretty sure he knows where all the bathrooms are, and how to find the library?

I know I’ve mentioned the leg torture machine, here and there. This is the CPM machine, with my leg bending at 70-degrees. I have to use it 6-hours a day. I put my leg in, and it bends my leg to a prescribed degree, then bends it back to neutral, over and over again, until the end of time. It’s truly the best time ever.

I know I’ve mentioned the leg torture machine, here and there. This is the CPM machine, with my leg bending at 70-degrees. I have to use it 6-hours a day. I put my leg in, and it bends my leg to a prescribed degree, then bends it back to neutral, over and over again, until the end of time. It’s truly the best time ever.

 

I’ve been out of the “working” world for so long, that I get ambitious for a 9 am appointment, thinking that I can shower and get my makeup on, you know, look human, beforehand. I get the idea that if I get up at 7-7:30, I can accomplish the goal of leaving by 8:30, and be on time. Like always though, I left in sweatpants and a t-shirt, with my teeth brushed, and nothing more.

 

Honestly, if I had to get a real job again, I think it would be tragic for everyone. The poor peoples of the public sphere would be forced to see me straggly-haired and hideous, because I simply cannot stop snooze-buttoning, and/or I would drive my family crazy with flurrying around the house to get public-ready.

 

One of my favorite pictures of Mew from this week. He is a super anti-social cat, but he adores me, and his evening snuggles against my chest. This is his jealous face when I dared to give Bear a little scratch during Mew’s time. I thought it was adorable. My favorite part of this photo was that when I showed it to Bryon, he totally didn’t get it. He was like, “What? it’s the cats??” Non-cat people don’t get their little personalities. I think I might be crazy, and recognizing it is the first sign. I don’t want to do anything about it, but I do recognize it.

One of my favorite pictures of Mew from this week. He is a super anti-social cat, but he adores me, and his evening snuggles against my chest. This is his jealous face when I dared to give Bear a little scratch during Mew’s time. I thought it was adorable. My favorite part of this photo was that when I showed it to Bryon, he totally didn’t get it. He was like, “What? it’s the cats??” Non-cat people don’t get their little personalities. I think I might be crazy, and recognizing it is the first sign. I don’t want to do anything about it, but I do recognize it.

Anyway, back to the dermatologist! I couldn’t believe how busy this place was for a 9 am appointment! She’d already seen and cleared patients before we’d gotten there. I’m impressed with someone who is up and working before 9 am, on a Monday morning (back to my previous morning laziness). One thing chronic illness will get you, if you can afford it, (thank goodness for that!) is the ability to sleep in, on a Monday morning, without judgement.

 

The best part of this appointment was that it was totally unnecessary. But, of course I couldn’t cancel it because of the whole, “we’ll charge you $50 if you don’t cancel it by 5 pm the day before,” which was Friday. This is what my leg looked like this morning when we went in, despite the hideousness that it was last week:

Two things come to mind when i see this: first, i’m almost healed from the plague I had last week: and second, I used to have wicked calf muscles. Damn, it’s going to take a lot of work to get back to normal. Don’t surgeons know that I’m over 40. It takes 10x the amount of work to gain muscle and tone we lose when we lose it! Gaaaah! Not looking forward to this

Two things come to mind when i see this: first, i’m almost healed from the plague I had last week: and second, I used to have wicked calf muscles. Damn, it’s going to take a lot of work to get back to normal. Don’t surgeons know that I’m over 40. It takes 10x the amount of work to gain muscle and tone we lose when we lose it! Gaaaah! Not looking forward to this


I was pretty sure that this was going to be a waste of time, or that worse, she was going to be willing to take a biopsy, “just in case.” No one wants their skin sliced and diced just for the hell of it. Instead, she was the common-sense fairy, sent to deliver the most ridiculous diagnosis I’ve ever heard, and to both put all my fears to rest, and to make me feel like I’m, indeed, the most broken body in the universe.

All prepped for slicing and dicing me, if the need arose. Phew. It did not.

All prepped for slicing and dicing me, if the need arose. Phew. It did not.

 

I had an allergic reaction to, wait for it…Cold.

 

I did not have frost-bite. Apparently, that presents differently, so let’s be exceptionally clear. I had an allergic reaction to cold. She had a complicated name to what the rash is called, with the suffix “dermis” in there somewhere. I tried to file it away for this very purpose, so I could sound smart and official; however, I forgot it before I even left the exam room.

 

Me: What did she call it, exactly?

Bryon: I don’t know? Something medical.

Me: You are not helpful.

Bryon: Never said I was.

 

Anyway, all the other potential diagnoses were complete garbage. Shingles doesn’t go away that quickly. Vasculitis doesn’t start with a bug-bite presentation the way this did. Frostbite, right out. This was an allergic reaction, and it was specifically obvious to cold being present on my skin 24/7. Apparently, the histamines just build up, and build up, and then say, “nope, had enough.”

 

Oddly enough, I was pretty sure it wasn’t frostbite to begin with, as I’ve had frostbite on my face before, from headaches and ice packs on my face, forehead and jaws. When headaches go on for days, sometimes the ice sits there for hours upon hours and I get patches of frostbite. It’s normally just red and patchy. It never looks like what happened on my leg. I was willing to believe the marks on my leg showed up in the “shape” of the ice placed on the area, but it still seemed a little far-fetched. So, I’m glad I have an easier to believe diagnosis; even if it is a silly one.

 

Oh, and apparently, it’s quite unusual. Yep, of course it is. When she said that, I was like, duh!

 

So, moving forward I have to remember that I am technically “allergic” to the cold, and I should be careful of over-exposure. I plan to use this to my advantage, pushing my “allergy” as a reason to avoid cold weather activities which I already loathe. There shall be no snow shoveling (as if Bryon would let me), no sledding, no snow….fill in the blank, of any kind. There shall be no winter’ing. In other words, I shall forever forth experience winter indoors, from the warmth of the fireplace, waiting to greet my boy with hot chocolate, as he comes in, pink-cheeked and wet with the moisture of hell-season.

 

Allergies. The perfect excuse to avoid something we hate anyway. Can I be allergic to uncomfortable conversations, social situations, and meeting new people?

 

In totally unrelated news, when we arrived home from our excursion to the dermatologist, I discovered that the cats had some sort of extreme play session that landed this toy, which came from downstairs, into the toilet, upstairs. I’m not sure if this means they really had a raucous good time; or, if they are telling me that they hate this toy so much that they had to deeply coordinate this maneuver to throw it out. Either way, it’s now in the trash. Crazy cats. With their crazy cat lady mama.

For some reason, two of my three cats are obsessed with this toilet. No matter how much fresh water they have, they drink out of it. When they aren’t drinking out of it, they are examining it. When I’m on it, they are watching. When I’m not, they are wondering when I’ll be on it next. Cats are weird.

For some reason, two of my three cats are obsessed with this toilet. No matter how much fresh water they have, they drink out of it. When they aren’t drinking out of it, they are examining it. When I’m on it, they are watching. When I’m not, they are wondering when I’ll be on it next. Cats are weird.

 

Oh…and at least this time, for a weird dermatology thing, we didn’t get caught, “humping,” as my son says, like at the lip biopsy appointment a few months back. Nope. On our best behavior.

 

I’m having a hard time transitioning my writing from M.A./Ph.D writing to undergrad. So my paper topic is way too big and too in-depth for a 15-page paper. I have an outline/plan for what could amount for a dissertation or a book. My professor keeps telling me so, and to narrow. I know I need to! But, this weekend, working on the big picture took me two solid days. This was the result: judgemental kitties who didn’t get enough attention while i worked away at my lap desk. Sorry Homer and Bear. Lots of treats coming your way.

I’m having a hard time transitioning my writing from M.A./Ph.D writing to undergrad. So my paper topic is way too big and too in-depth for a 15-page paper. I have an outline/plan for what could amount for a dissertation or a book. My professor keeps telling me so, and to narrow. I know I need to! But, this weekend, working on the big picture took me two solid days. This was the result: judgemental kitties who didn’t get enough attention while i worked away at my lap desk. Sorry Homer and Bear. Lots of treats coming your way.

 

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.