So after five years, I decided to bring back my Chasing Zebras: Living with an Undiagnosed Disease blog back; except that I’m not living with an undiagnosed diseases. I live with Lupus co-occurring with Ankylosing Spondylitis, Sjogrens, Antiphospholipid Syndrome, Epilepsy, and paralysis of most of my GI system.

Saturday, August 26, 2017

The Side Effect of Solitude

I was supposed to see a friend today, but woke up this morning feeling overly tired. This was not a good sign. I walked my dogs and got more tired. A worsening sign. So I did the only thing I know how to do to cope with the horrible fatigue. I went back to sleep. When I woke up at noon, I hadn’t recovered my energy. Then came the heat on my face as a rash started to spread cheek-to-cheek. Then came a headache and joint pain. And the time drew closer to when I would have to leave to see my friend and pain medication did more to make me tired than reduce pain, I knew I would have to cancel.

Cancelling visits is par for the course with my illnesses. I’m always having to cancel some activity because of ongoing symptoms. When we think of chronic disease, we typically think of chronic symptoms, but there is more than that. There are social impacts and for me that has been loss of a marriage, loss of friendships and for those I retain as friends, the one thing they’ve come to know well is my absence.

It’s been that way for almost 20 years now, since I first became sick. Relationships are hard work and one of the things you need to be able to do so they are successful is show up. And it’s something that these illnesses of Lupus, Ankylosing Spondylitis, Sjogrens, Antiphospholipid Syndrome, Epilepsy, etc., make it impossible to guarantee. There are more times than not that I simply can’t show up. Illnesses are lonely bedfellows.

Friday, August 25, 2017

Borderlands

Borderlands are perilous places where you are neither here nor there. You have no tangible grounding and may not even fit on one side or the other. We often think of borderlands in terms of ethnicity; of great barrier walls rising up between nations to define who fits and who does not. These are structurally violent borderlands—by this I mean they are landscapes where governments or groups of people create social structures to deny human rights to another group. And eventually, these hot spots of structural violence lead to actual violence as individuals rage for their justifiable human freedoms. Yet what is this doing in a blog about illness?

Well, there are borderlands in medicine—created structures that allow certain status quos to remain in place that are harmful. For example, two individuals are seen at an ER for chest pain. One has pain in the heart region and radiating down the left arm; the other has pain in the back and just where the stomach is. The first patient is male and the second patient is female. The male patient is identified as having a heart attack and treated quickly. He survives. The female patient is diagnosed with epigastric pain likely due to stomach-related issues; she dies. The problem: men and women present differently when it comes to heart attacks, but research, until recently, only studied men leaving women stuck at the borderland or flung over the wall with an entirely incorrect diagnosis based on nothing more than hunches and stereotypes.

Borderlands pop up all over medicine. Sometimes they are as simple as appearing in labwork, where your bloodwork skirts the edge of normal, indicating something violent is brewing but it is ignored by physicians as being spurious, incidental, mistaken. Borderlands appear when doctors are unsure as to what is going wrong in your body and when pressed for an answer, physical illness is denied in favor of very rare, rare psychiatric conditions. If you do not fall on this side of the wall, you must be on that side—one side are physical illnesses and on the other are psychiatric illnesses, as if the latter has no biological basis for its occurrence. And your bloodwork is the fence that divides the two. The danger is obvious—a wrong medical diagnosis leads to improper treatment, at best. At worse, death.

I’ve sat on those borderland fences many times. Every time I have to talk to a doctor about a new symptom, I am right back at that fence. That is how I feel heading into my neurology appointment next week. I am already worried about it, despite the fact I have known my neurologist for 10 years now. Is there a medical cause for failing muscles or is it simply “all in my head”.

Thursday, August 24, 2017

When the Machine Thinks You’re Dead

Today I had Pulmonary Function Tests (PFTs) as part of my sleep-study evaluations. I’ve had them before. If you’re an asthmatic, you’ve had them plenty of times over the course of your life. Even my nephew when he was 5 was having them done due to his asthma. What made today quite out of the ordinary from my prior studies years ago is the machine essentially didn’t “see” me. I have begun to breathe so shallowly and slowly that I was invisible to the machine, effectively dead. If it were a heart monitor it would be flat-lining. It’s not quite a surprise that the machine didn’t pick up my breathing, both my current significant other and my ex-husband have both commented that they check on me at night as they can’t see my chest rise or fall. In short, they think I’m dead until I do my characteristic breath-in-like-I’ve-just-had-a-gag-removed yawn. The respiratory therapist was monetarily baffled by the event and looked at me and then back at the machine. She adjusted a few things then had to guide me to breathe properly. Who would have thought there is a proper way to breathe and that I had been doing it wrong all these years. I have to admit that how she had me breathing felt too fast and too deep. I thought I was going to pass out with the amount of muscle-movement required to sustain the breathing. And I’m not foreign to deep breathing. I was a professional singer at one point. But that was a long time ago now. And part of the reason I’m not is precisely this reason. My muscles simply do not support deep and normal breathing. They weaken, I get tired, I yawn in an attempt to get oxygen in. then I go back to shallow breathing.

This is one of those anomalies that still define my illness. I have diagnoses, but they don’t fully explain all the small idiosyncrasies that happen. The small stutters of physical function that just aren’t normal, but have no specific identifier associated with them yet. I used to be all idiosyncratic. A sign here; a sign there—here a symptom, there a symptom, Old McDowell on a farm ei ei o. But now most things fall into a diagnostic category, nice and neat. Except my breathing here. And my leg muscles a few months ago.

In April, I think, my memory has my many hospitalizations all run together this past year, I was hospitalized initially on suspicion of a stroke. I knew it wasn’t one, but because my clot risks are so severe and my cardiologist was the one who sent me in (I was diaphoretic, weak, pale, cold and looking sickly) they were cautious. What happened was simple. I gradually lost functioning of my limbs, mostly the legs. I couldn’t lift them. My muscles just went on me. My breathing isn’t different. All my muscles give out on me after a relatively short period of time of using them past exertion point. Walking around the block is almost impossible to do now. It’s a good day when I can get four houses down and four houses back from mine. I’m best after prednisone. I can walk longer, breathe better. But once that starts to wear off I’m back to feeling like ever stair is a gargantuan task that there’s no way on earth I can achieve it. And I have about twenty-stairs into my place. Ouch. This year it’s been worse than ever. And I can’t explain it. Once again I have a symptom that I just don’t know how to explain without it being dismissed as “all in my head” (used in the sarcastic, gender-specific, dismissive way) or simply responded to with a shrug of “I don’t know”.

This brings back an issue that I wrote about a lot in my first blog: The challenge of being taken seriously when you are a woman and/or when you have unusual symptoms. If you don’t fit the mold, most doctors don’t respond like House and start launching an investigation into your weird symptoms with fascination and clinical Sherlockian skill. Most determine quite quickly that you are doing one or more of the following:

  1. Taking a deep-seated or not-so deep-seated problem and “converting” it through the amazing power of the unconscious brain into a physical symptom, known as a Conversion Disorder; this is especially true if it is neurological symptoms; if it’s generalized bodily symptoms it is known as a “Somatoform Disorder”—oh the pesky unconscious brain!

  2. You think something is wrong with you but nothing really is, hypochondriasis

  3. Finally, you have things wrong with you but have become preoccupied with them. The new DSM had to stay relevant somehow when more and more research fails to prove the first one on this list to be true. So now you’re nuts if you worry about what is actually wrong with you.


So the weak muscles have thrown me into the viper pit, so to speak, of having to talk with doctors about an unexplained phenomena that is getting worse not better. And the first doctor I have to talk with is my neurologist. She’s a great doctor, but I came to her when I was already diagnosed with neurological issues: epilepsy, strokes… all well documented. Now I have to enlist her help to think outside the box of “nothing is really wrong with you.”

And perhaps nothing is. Maybe it’s the breathing machine that has a problem.

Wednesday, August 23, 2017

Day by Day

It’s a bad day today. What I mean about that is it’s a flare-up day. I enjoyed the sun too long on the day of the eclipse and it’s catching up with me. Lupus should have been named after a vampire the way we react to the sun: rashes, fatigue, full flare-ups. Sun screen doesn’t even help most of the time. So how do I feel today other than the generic “crap”.

When I have one of these brief flare-ups it takes about two days to get going. The first day starts with some minor aches and pains. Nothing that I can’t handle. I managed to push through, go food shopping and lug all my groceries upstairs. But today, today is one of those days I hate. I’m falling asleep in mid-conversation. Getting out of bed feels like too much work. Even typing this feels like too much effort, but I wanted to write exactly what happens as it’s happening. What does Lupus feel like…

1. So little energy that lifting limbs feels like you are lifting 100lb weights. Your very breathing is tired and shallow. And it feels like you just don’t get enough air in to your lungs to sustain yourself, so you yawn—a natural gasp for air. Muscles simply don’t work the way they should—they burn, they weaken, they sleep. And when they sleep, you sleep. 2. I eat whatever sweets I find. As if my body is trying desperately to find something to wake itself up. But of course such an instinct does nothing but make me fatter than I already am. So I try to fight it and just drink water. 3. Then comes the joint pain. It starts off subtle at first. An ache here and there. Yesterday it was stiffness in my toes, then gradually my feet. By bedtime, my feet had become so painful, I couldn’t rest them on the bed. Today it’s the feet, hips, and back. Even the fingers hurt. I’ll be rubbing Voltaran gel on them.

What happens when this all occurs: Nothing. Therein lies the problem. When I get hit with these flare-ups all I can do is sleep. Showering becomes work and the idea I have to go out today to the pharmacy is overwhelming.

Disease isn’t just a word and a constellation of symptoms. It’s people. People having to cope day in and day out with symptoms; having to figure out how to negotiate day-to-day activities even while in pain or weakness... When you are on the outside looking in, it’s easy to forget that it’s a constant experience.

Tuesday, August 22, 2017

Through the Glass Darkly

I don’t talk about this diagnosis often; in fact up until now, only three people know about it. It’s a psychiatric disorder of cognition known as Body Dysmorphic Disorder. In BDD, your brain distorts how you view your body. Rather than looking at yourself as you are, BDD forces you to see your body in the most negative ways possible. It’s not talked about often in the landscape of psychiatry, part of this is due to the patients themselves who experience enormous shame.

The body is a shame-inducing aspect of life on Earth, isn’t it? After all, we turn red when we fart; we have euphemisms for bowel movements and urinating. We have a host of names we us to call our genitalia, some cute, some offensive. We embody the moment when Adam and Eve suddenly knew their shame. BDD takes shame to a whole new level that a fig leaf just can’t cover up.

In BDD, your brain gets stuck on a part of your body and spends minutes to hours to days ripping shreds into your sense of self for the perceived imperfections that part of the body has. And god forbid, you actually have a flaw in the area—then there is no end to the vitriolic whispers that seep into you as your brain thinks. And because it emanates from your brain, it is with you all the time. Every waking moment your sense of self is slowly eroded until all you want to do is hide in a closet until the world ends, which you pray is sooner rather than later.

It’s a painful disorder. I’m not sure if it translates into physical pain and contributes to my illness. I would think not since I’ve had BDD since I was around 10 and my physical pain started in adulthood. But it does cause excruciating psychic pain; this is because during the day and night, your inner voice tells you repeatedly all the things that are wrong with your body in the most abusive language possible. The voice is laden with cruelty.

For me, this inner demon has a range of commentary. If I catch a glimpse of myself in the mirror, I get stuck staring. Like Narcissus staring at his beauty in the glassy lake, I stare at what is ugly in the smudged mirror. What I look at can be my skin, the small droop to one eye, the unevenness of my face, the flatness at the back of my skull that gives a rectangular view to my profile, or the thin smear of facial hair under my chin (this I focus the most on, so much so I resist hugging my significant other lest he fee any prickliness on his skin and begins to think “ew how gross”. And that’s just the face, so I avoid mirrors as much as possible. If I don’t have the visual input I can get away with not thinking about my features, except the hair on my face. I know intellectually, that what I find imperfect is actually normal and if I see it on someone else I don’t think the person is ugly. But it makes no difference to my brain because it means I am not attractive.

Then comes the body. I have always been at war with my body, ever sense I was a child. My body was the landscape where insults and arguments with my mother, my grandmother, my peers were launched. My body was the landscape of violent abuse and repeated rape all by the time I was sixteen. It was a body that I wished to be gone from. But it was one I was stuck with and my brain never let me forget this.

By the time I was five, my hair was a battle zone between my mother and I. She wanted it long and silky. I wanted it short and less tangled. Night after night, I cried as she attempted to detangle my hair with sprays and water and special shampoos to get it the right consistency. Finally, I took scissors and cut the bangs, right before picture day. My mother was horrified, but I felt a small victory and soon learned that scissors and my hair was one thing I had control over. And I got my short hair.

But I still wasn’t “Ladylike” enough according to my maternal grandmother. My feet were too big, like blocks, nothing compared to my mother’s dainty feet she paraded and wiggled in front of me. My feet were too big—to big blocks of marble that a sculptor failed to finish correctly. And I never wore lipstick and a “lady does not leave the house without lipstick on”—I was allergic. But most of all, my boobs were too big and uneven. Most humiliating of all, I “didn’t look the way I was supposed to”.

My BDD coupled with the reinforcing statements of my mother led to a drastic measure of breast reduction surgery. It was so bad that when I met with the plastic surgeon I told him to cut my breasts entirely off. Instead, I endured the humiliating process of him telling me in great detail how my breasts were poorly made. The nipples hung too low, the breasts too pendulum like, not perky. “So we just move the nipples up to the center, take all this extra fat out”—sharpie marker tattooed my wrong boobs. Years later I would learn my breasts had been fine, the exact shape to nurse an infant. Nipples are supposed to be down so babies can feed more easily. Who would have guessed that nature and God actually designed something more perfect than what man could come up with. But now I looked like a Porn Star—bright perky boobs, with scars however. I was promised no scars. I had something to explain to every boyfriend and something else to focus on. But according to my mother, “You look just as you should have looked.” My body was temporarily right.

But not for long…damage was done. For the next 23 years, I would slowly erode what self-esteem I had to become someone who was afraid of being seen in public. Self-conscious that all my disfigurement would be noticed. I gave up careers, failed at relationships, and avoided restaurants like the plague. And of course it didn’t help that my body failed me entirely and became riddled with a disease. And the one side effect I prayed would never happen, happened. I gained and gained and kept on gaining weight.

I had been thin most of my life. Big boobed, but thin. I didn’t have to hear “you’re too fat”, instead I heard things like “she’s big on top and has a long waist to her crotch” when my mother took me to fit me for an 8th-grade prom dress. But I never heard, “she’s fat.” Until years of corticosteroids, antidepressants, and antiepileptic medication turned me into a round apple of a woman. And my BDD went into overdrive. All mirrors had to be avoided, all pictures shredded. I was horrified when a picture of me ended up on facebook from a family trip to Medieval Times and I stared and stared at the picture in sheer horror.

I’m lucky, however, it appears my Nudexta is a wonder drug for BDD, although no research has ever studied it with BDD. So my symptoms are not so bad most days now, but recently they have been creeping in again and I find myself staring at the mirror, ready to fall like Alice Through the Glass Darkly

Sunday, August 20, 2017

Pills, Pills, Pills!

Let’s go over my med list for pure ^&*ts and giggles!! It’s a colorful array of pills, capsules, inhalers, sprays… lots of fun!! Let’s get started!

Alfuzosin: this lovely pill is so I can urinate more easily, without it I sit on the toilet and start humming muzak to kill time and entertain any individual in the bathroom with me if I’m out and about in the world. I do hum well.

Dexilant: this bright-blue capsule helps reduce the risk of pneumonia from stomach acid zipping up my esophagus.

Reglan: four times a day I swallow this white, chalky pill so that I can actually swallow and move food down and out my stomach, all the while keeping it in. You see I have what appears to be progressive paralysis of my esophagus and stomach.

Linzess: every morning this delicate, white capsule stickily slips down my throat to help my intestines cope with their growing paralysis.

Metformin: this is a hellacious, monster tablet I was put on after the scales of corticosteroid use tipped against my favor and started to cause blood sugar problems.

Aquoral: With sjogrens drying out my body from the inside out, I’ve recently needed a prescription spray for my mouth so that I have saliva.

Pilocarpine: Four times a day this tiny pill causes me to sweat like a little piggy in the hot, summer sun (if in fact pigs sweat) just so I can have saliva in my mouth.

Cimzia: the ouch medication. This is a shot I give myself every two weeks in my belly. And it hurts, all so that my spine can stop fusing together

Methotrexate: this is my weekly injection of low-dose chemotherapy designed to help not only keep my Ankylosing Spondylitis, but my Lupus under control. So far I haven’t lost too much hair, but I’ve learned I can’t color my hair. But that’s okay, I always wanted to see how my hair would eventually look gray!

Plaquenil: The staple of all rheumatological medications for Lupus and the wonderful array of other diseases.

Vicodin: This year saw my pain become intolerable. It was a bad year; a very bad year for me from strokes, heart attack, to a dissected artery, pain because more extreme than what I was used too. But so far not a medication I have to take on a daily basis.

Coumadin: discovered as an effective rat poison, this is the wonderful three and a half, purple pills I take every day in the hopes I don’t have an infarction in yet another organ. So far I’m making progress checking off each organ: brain (12 TIAs, 3 strokes), Large Intestine, Kidney, Lung, a small heart attack, and likely my left vertebral artery that clotted and tore.

Lovenox: another shot for when my Coumadin doesn’t work effectively enough.

Cymbalta: As most individuals with severe chronic illness, I suffer from depression, this wonderful med has the dual purpose of being a good antidepressant and an even better medication for nerve pain!

Ativan: Anxiety is a major problem that needs to be nipped in the bud as quickly as possible precisely because anxiety and depression together can wreak havoc with the body, increasing pain perception and placing you at risk for worsening diseases due to stress and biochemical changes.

Nudexta: I have a rare disorder known as pseudobulbar. It’s where your brain responds to social situations with the incorrect or opposite emotional responses. It makes it confusing to those you are engaging with when it’s not managed and managing it generally requires medication as it’s precisely due to brain damage.

Silenor: I can’t sleep some days.

Gabapentin: Strokes cause a challenge of lifelong problems when you survive them. There is always damage. Even when the person doesn’t look like they suffered damage, they have, you just have to dig deeper. For me, one source of damage is epilepsy, so I take five of these capsules a day.

Lamictal: four pills a day, I take this med to further help with the progressive form of epilepsy I was diagnosed with.

Oxcarbazepine: this orange pill is also for epilepsy.

For allergies, allergies, allergies Oh My! I take: Zyrtec, sniff Flonase, inhale Advair HFA and on bad days, Ventolin, and Duo-Neb

I’ve suffered from high blood pressure since I was 18, but after my heart attack this past year, my heart has gone into AFib and looks “sluggish” on heart monitoris. As such, they added Metoprolol to my Lisinopril. So these pink pills help the heart beat fine.

Friday, August 18, 2017

Elephantine Nose

So about 6 weeks ago I was diagnosed with sleep apnea, which may partly explain my somnolence during the day. I mastered the art of falling asleep in the middle of conversations, driving, phone calls. One friend I hadn’t spoken to in a while had the pleasure of silence on the other end of the line as I conked out like someone who drank way, way too much liquor. My significant other tells me he loves me and that I don’t annoy him most of the time, (nice right? sheesh). What annoys him is when I fall asleep in mid conversation or watching a movie. He’s even so nice as to film me while I gently and ever-so delicately snore. The reason he hates it so much: he gets bored without me awake, alert, and listening. Ladies, men like to talk—and they like to talk a lot. Contrary to all the ideas that they don’t like to share, take it from me having run group therapy for men and my own romantic life as a perpetual listener—they love to talk. And have a lot to say that can be interesting, most of the time. But I digress. So back to the wonderful world of sleep disorders…

So sleep apnea could explain some of the day-time sleepiness. Anemia also had a hand in it (IV iron treatments helped immensely with that). But the biggest culprit is my autoimmune diseases. They are the gift that keeps on giving and giving and giving. I have days where I’m so tired walking feels like I’m lugging stones around and that’s not because I’m overweight, thank you very much. I used to describe the feeling as walking through glue or some other sticky substance that is clinging to my legs. Stairs are my dreaded archenemy. And we have lots of stairs and dogs and thus lots of climbing and walk requirements. Sometimes it’s so bad that rolling my belly out of bed takes more effort than I want. And mind you, yes I’m chubby but I’m not Santa Clause, not yet at least. But if they keep putting me on Prednisone, I may end up shimmying down your chimneys at Christmas.

Lupus, Ankylosing Spondylitis, Sjogrens, and all the other lovely autoimmune diseases poop you out. Just saying the full names of all of them poops one out. Part of this is the chronicity of pain. My pain specialist is the best and he always makes sure to remind patients, pain is a pain in the ass but it won’t kill you even when you feel like it is. Pain is a symptom, so is fatigue. Neither one is fatal or serious until you give up being responsible for the proper treatment of them. Yes I just slipped in a short and fast lecture! But seriously, it’s true. I realized that by not treating my fatigue and letting it go on had consequences that were in fact threatening to my well-being. Relationship issues—who wants to being romantically involved with someone who just falls asleep on you. Transportation issues—who wants to meet my car face-to-face rather than me, I ask? These symptoms aren’t life-threatening. They’re not the symptoms like blood clots, heart inflammation, kidney failure. These are the overt, overwhelming symptoms that can really mess things up around you. Car accident, pain medication addiction, you get my drift.

So where am I in my sleep treatment you might ask? Well for starters, it all required another corticosteroid shot, yes that weight-gaining medication. Fatigue and pain are all symptoms of an active disease—the only way to treat the diseases is to turn off the immune system. That was step one. Step two was getting a CPAP machine. The dreaded machine that makes you feel like to can’t breathe every time you open your mouth and air is suddenly forced up your nose.

This machine has improved my daytime fatigue, but man is it uncomfortable and awkward. It straps around my head, pinching my face into some sort of raisinesque wrinkles, all the while covering my nose with a long tube attached to it going to the whirring machine. I end up looking like a strange elephant. And forget about wearing glasses with it so you can read your Kindle at night for my now sleepless nights. The nose piece is so big on me it goes into the corner of my eyes and that’s a SMALL mask!!

Did you miss it? My little disclosure? Yes friends! I have subsequently developed insomnia. So needless to say, I am awake now—but most of that is when everyone else is asleep.

Tuesday, August 8, 2017

Even Doctors Have Money-Making Schemes

In all businesses there are, to be blunt, the schemes to make money. Strategies to increase profits and these strategies are always at the expense of the consumer. When we think of the medical profession, we typically forget that we are consumers and doctors run businesses. When we see doctors, we are singularly focused on feeling better and less focused on the doctor’s profits or bottom line. If we have good insurance paid for by our work, we typically stop thinking about the cost of medical care all together as it is almost invisible to us. We may only encounter the business end of our medical care with a co-pay of some type. Then we forget. If you have a chronic illness, you are seeing so many doctors at any given time, you can’t help but notice the money changing hands. Usually it’s happening so much, it’s an unavoidable aspect of our medical care. And in many instances, particularly if you have Medicare and no supplement (if you are like me, you are too young to have a quality supplement and the ones that are available are too costly), you are paying bills after the appointment for what was unpaid by medical insurance. But there is another way doctors manage to wrangle a few more dollars from you and in such a way as to play on the idea, not the fact, that they actually care about you personally and know you well. (While most of my doctors I’ve seen for years, know me very well, most of my other specialists know me only by face, not by name.) This seemingly innocent strategy is denying refills of your medication.

Today, I made one of my many trips to my pharmacy--they do know me by name and even know my birthdate now, despite being a big chain. I was told that one of my doctors who prescribes my Alfuzosin denied the refill without an appointment. So at first thought, you might say: sure that’s good medical practice; he or she wants to make sure you are doing okay on the medicine. The problem with this as the first thought is it is a surefire way to losing money. Your first impulse is to call the doctor and make an appointment. You’re willing to pay the copay for the visit to get the medication because the doctor has your best-interest at heart. Sometimes that thought is logical, but only if you are on a new medication and the doctor needs to assess how you are doing; to touch base with you to make sure you are improving and not having side effects. They need this for their records and liability risks, and usually the patient needs this to feel reassured. I’m all for it. But then you become a source of income and it goes something like this:

May 2017 I saw my urologist for a follow-up. Due to the strokes and SLE progression, I have some paralysis of my bladder making urinating hard to do; I take a medication that stimulates bladder contractions so that I can urinate. It’s an important medication. Urine retention can be fatal untreated--it’s just one more of those health issues I have that carry the label “fatal if untreated by medications”. My urologist is good. He’s also a very sardonic kind of guy. When I first met him he said to me I have a medication list like an 80-year-old lady in poor health. He’s one of those doctors who is what I call a WYSIWYG--what you see is what you get, he doesn’t make much attempt at being a doctor. He complains to you about his work, he makes sarcastic comments, he’s upfront about how little time he has with patients, etc. So when I last saw him, he said, “I will see you in 2018, no need to see you sooner.” Why? Because I have to be able to pee. The medication works. I’ve been on it long enough to no longer have major side effects. I’m a stable, boring patient at the moment in his eyes. But here I am unable to fill a medication I need, will run out of sooner than I can get an appointment with an over-booked doctor, when I shouldn’t even have to see… But he works for a larger medical group. And they have their own policy: make money.

So when my pharmacy made their routine call for refills. A receptionist or nurse told them I need to come back in, when the doctor doesn’t need to see me. And in all truth, I don’t have the money to waste on appointments that are medically unnecessary. But I will have to call and make that appointment because Doctors have something no other business holds in their hands: our lives. And so my money will go out the window.