The One With All The Medical Drama

Let me preface this post by admitting that I am a terrible patient. I am stubborn, opinionated, and, well, impatient. So maybe my appointment was doomed before it started.

I’ve got this weird liver disorder. It’s rare, it’s frustrating, and very few doctors have heard of it. I have a flare-up every year or so, and my doctor decided it’s probably time to seek the input of a specialist. Except there’s that bit about it being a rare disorder that no one has ever heard of. But I trust my doctor, and if she no longer feels comfortable managing this thing by herself, I have to go with it. So she made an appointment with a hematologist. Actually, she sent out a request to a bunch of doctors in a variety of specialties because there’s not an organ system this thing doesn’t affect. But the hematologist was the only one who would agree to see me. I went.

By the time I parked the car, I was already in a bad mood. It yanks my chain that they require a huge co-pay to see a specialist in the first place,  then they they bilk me out of my coffee money by charging for parking. And let’s just go ahead and throw out that the individual who designed the parking garage is an idiot who be cursed to spend all eternity in a HumV circling and finding only spots marked “Compact cars.” Why would there be two exits with no signs indicating they didn’t end up at the same place? I took the exit closest to me and learned too late that all roads do NOT lead to Rome, or even to the Cancer Center. This exit led only to the ER. The only way to get to the Cancer Center from my sidewalk was to crawl through the shrubs. So I did. I can’t say that doing so improved my mood a whole lot.

Pretty much sums it up.

Pretty much sums it up.

My paperwork had detailed directions, including the building number. Unfortunately, the dude or dudette who designed the garage may have had a hand in the rest of the architecture. None of the buildings in the entire compound were marked with letters. I had to ask the parking lot attendant for help. She gave me a look probably reserved for morons who crawl through the bushes and gestured to the orthopedic center. I should have guessed.

When I found the suite, I checked in. The nice lady behind the counter handed me a pager. “Now,” she said, proceeding to give me a list of instructions far too complicated for 8:30 in the morning. “When this goes off, go over there to the lab. They’ll call you back. When they’re done, go down that way, first door on the left- not the hall on the left, the door, the  shake your right foot three times, jump up and touch the ceiling, steal a silver hair from the head of a mage by the light of a virgin moon, fold your copay three times and chant ‘Burning money is fun,’  and then take a seat on the north-facing wall beside the of doom.'”

I blinked. “I do what?” I hadn’t had my coffee yet. She went through her instructions again. I smiled and nodded.

She sighed.  “When you’re done with labs, come back here. A nurse can show you what to do.”

The pager went off. I went to the lab. They pushed up my sleeve, and a vampire in purple scrubs took seven vials of blood. Then she cheerfully pointed me down the hall from whence I had come. I found the desk of the nice lady, but she saw me coming and was conveniently turned away from me. I managed to find where I was supposed to be by shuffling a pack of Tarot cards, spitting three times, and following a line of sick people.

When I was finally called back, I was taken to a room. And left there. I brought an e-reader and a back-up book, so at least I had something to read besides the battered copies of “Web M.D” (spoiler alert- all their articles are titled “You probably have cancer. See a doctor.”), so I didn’t suffer too much. Finally, a nurse practitioner came in and told me they weren’t quite sure what to do with me because I had been scheduled to see a doctor who…wait for it… wasn’t actually working that day. She did take my history and looked briefly over the paperwork I had brought.

“Do you drink?” she asked.

“Um, no. I can’t because of this thing I have that you just said you are familiar with.”

“Not at all?”

“No. Even when I take communion, I have to go for the non-alcoholic blood of Jesus.”

She gave me the stink eye. “Do you smoke?”

“No,” I answered.

Her eyes narrowed further. “You have never smoked ever?” she asked. Because I look like a smoker? Did she smell something on me? I swear, it was just bad gas.

“No, never,” I said, crossing my heart and hoping to die.

“It says here your energy level is down.”

“Yes.”

“Are you active for more than fifty percent of the day?”

“Um, I get up at 6:00am, and I’m going to bed at 7:30pm, so…I guess so?”

She shrugged and moved on. “Street drugs?”

“No.” Though I was never closer than at that moment.

She paused significantly. Made a note. Left.

The doctor came in at last. We chatted. He was kind, he was funny, he likes reptiles. All things we look for in a good hematologist. But he wants to go back to diagnostics. On a disorder we’ve known about for 12 years. A disorder for which my mother has the genetic marker and which has a 50% rate of inheritance. One I have all the triggers for, one I have been treated for successfully in the past. But the level of toxin in my blood was not high enough 12 years ago for 100% proof. Forget that the toxins wouldn’t have been present at all if I didn’t have the disorder.

There was no mention of attempting to alleviate my current symptoms – the lack of energy, excessive sleeping, anxiety, depression, inability to concentrate or focus, neuropathy that leads to screaming pain in my hands, the leg that has gone numb. Because we’re not ready for that yet.

We’re going back to the drawing board. And I understand. The treatment for this thing is dextrose and iron, so they have to make sure I’m not drug-seeking. It’s their bounden duty to see expensive repeat irrefutable evidence before they shoot me up with sugar water. It’s also their duty to make sure I don’t have extra money lying around. Because then I might do street drugs. So they’re doing me a favor by running unnecessary tests.

I go back in six weeks, after they have run tests on all my bodily fluids and done a reading of my past lives. I can hardly wait. I’ll keep you posted.

 

What’s your worst medical story? I want to know!

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45 thoughts on “The One With All The Medical Drama

  1. When I was pregnant with child #5…so I wasn’t a newbie…I started having trouble breathing at around 4 months pregnant. I begged for help, finally 9!days after I gave birth I was re-admitted to the hospital. Tests were done etc…I had HELLP syndrome. I had 15 lbs of total toxic fluid in my abdomen and my heart was having trouble beating, my liver enzyme level was through the roof. Long story short, my liver has yet to recover one year later and I still have trouble going up stairs…I get winded. They keep saying it will take time to heal but my liver enzyme levels never went down. I still can’t exercise. It’s sooo frustrating! I feel your pain. The only good thing that came from it was that my physicians name was Dr. Pepper. Which is funny.

    • I had to look up HELLP syndrome. I’m so glad you and the baby are okay! From what I read, they should never have let you wait to deliver. UGH! I hope your liver begins to repair itself soon. So frustrating.

      • I should have explained that so I’m sorry. I’m just so blessed that we are both ‘okay’. I’ll take being winded any day! I’m sorry you’re still struggling with the best care for yourself. Not being heard feels like you’re logging your hair on fire for nothing. Do keep us informed!

      • You didn’t need to explain. I have the magic of Google right here at my fingertips. I get chills, though, thinking about what might have happened because they didn’t listen to you. That enrages me.

      • I was beside myself when they put me back in the hospital. They made me leave before I was well because I had no one to care for our new baby. Their legal team said it could cause issues. But…Dr. Pepper gave me some things to help with recovery at home. He was flabbergasted that they wouldn’t let me stay.

  2. I feel bad for you, at the same time love your writing. The drawing is inspired and the directions, along with “burning money is fun!”, is priceless.
    Sending good thoughts your way.

  3. I sympathize with you and love your metaphors! Here is mine–The horrible, no good, awful Doctor’s Appointment

    I had gone deaf. After I flew from Mexico to Seattle I could hear only as well as somebody with a pillow stuffed in each ear. A couple of weeks later, because of a fear that my hearing loss was permanent, I requested that my doc send me to an ear, nose, and throat specialist. I put the address of the doctor’s office in my GPS and set out. After a 30-minute drive the GPS announced that I had arrived at my destination. I looked around. There was no doctor’s office with that address. To the left there was a medical building marked with the number that would come before the street address of the building where I was to find the office. Next was a hospital. To the right was a building with the number that would come after the street address I was looking for. I had no cell phone, no number for the doctor’s office, and no clue. After driving around the block a few times I went into the hospital. I was told that the office was in the hospital parking lot. Why didn’t they tell me that in the first place when I called for directions before I left home? After I found the office my blood pressure must have risen as my nose started bleeding. I have a bleeder in my right nostril that has a permanent scab on it and sometimes the scab will fall off and I will have nosebleed. The doc hooked me up to his machine to check my hearing and pointed out to me that I had a nosebleed. I was waiting for him to offer to cauterize it for me or at least hand me a tissue. I needed some sympathy here! No offer came. He told me that there was nothing wrong with my eardrums and that my hearing should come back eventually. Later, a woman doctor referred me to another ear, nose, and throat doc for my nose. My husband drove me to that office. I shouldn’t have worn a white blouse as during the cauterizing I had blood gush all over me! Next time I will wear a plastic hazard suit!

    • Oh, my goodness! YIKES! Blood everywhere, no tissue, and no directions. It’s the trifecta of doctor hell. Thanks for sharing. It helps to know I’m not all alone in my annoyance with medical professionals.

  4. Ugh, I’m sorry you’re going through this. It’s way too familiar – my own experience with the weird medical compound housing the hard to find doctor who’s just barely familiar with my rare disease. All that and then basically getting no help.
    I do likeyourmap of hell though.

  5. Although it makes me angry that healthcare is like this…I mean, why do they have medical records if they’re never going to read over them? but I hope that they start to do some serious thinking and figuring out the best treatments and that you start to get feeling better.

    I’ve had a bad knee since high school, which could be genetic or due partly to me not being an exactly athletic person. Joint issues do run in my family, though. I went through a roller coaster of x-rays, physical therapy, exams, and begging (including writing a letter) to have an MRI to take a look at what could possibly be wrong to have such extreme pain after simple activities on my feet. Several years later, I’m still with the same healthcare provider but in a different city and I have to reiterate everything and for some reason it feels like nobody’s read my medical record and seen all the hell I’ve already been through to just see what this thing is about. Still not feeling like it’s ever been taken seriously, but I like my new GP a lot and am hopeful that it’ll be good times going forward. TL;DR, joints are dumb. 😛

    • Ugh! I hate that for you! Joints maybe don’t read bells for providers like internal organ issues, but they impact quality of life like no one’s business. I can’t believe you had to write a letter to get an MRI. I hope your new doctor gets to the bottom of it because without functional knees,life is way harder than it should be. You should be able to move without pain.

      • I wrote a letter, but still didn’t get the MRI…still haven’t. They have a policy that they don’t do MRIs unless they’re planning to do surgery. It’s a consistent problem but intermittent, and I think that’s partly why they don’t take it seriously. But the flare-ups are bad, and that’s why I hope my new GP will get to the bottom of it eventually.

  6. My favorite medical story is an ER visit. I went in all kinds of messed up and in pain. They decided to do a CT scan on the ol’ abdomen with dye, just in case, blah blah blah. I should’ve known something was off because IVs, once in, rarely hurt for me, but it felt off. I ignored it. Got wheeled in after drinking the stuff that cleans you out before a scan and positioned to get it done. Radiologist guy tells me the usual, I have had a scan before a while back, so it was not supposed to be anything new.

    Except then it was new because he started to pump the dye into my veins and a few moments later…I don’t even know what happened to this day. I heard something happen. I think I said ‘uh something is wrong???’ I vaguely remember being told the needle hadn’t been in right and I am pretty sure the back up broke the IV line. Blood started coming out and he immediately went ‘DON’T LOOK’ which I now rank high as something you never want to hear a medical person say. Now I’m laying with my arm out and he’s hurriedly fixing it – I have no idea how, because I took his advice and DID NOT LOOK – and eventually everything was fixed. I saw the towel he had had under my arm while he was fixing it and there was a nice bit of blood on it.

    The entire time I was laughing, yes, laughing, the kind of hysterical freaked out laughing that you do unless you want to start crying. There was no ill effects afterwards beyond me being shaken as hell and giving the guy a look when he told me to make sure I laid still (which was fun to do when you’re freaked out).

    That was quite a night. Quite a night.

  7. I have a plethora of terrible medical experiences, but one of my “favorites” probably comes from last February. After having had trouble breathing since July and increased fatigue and stomach problems (which I’ve had seriously forever), my feet, then legs, then right arm began to swell. It was extremely painful, and being an otherwise healthy 18 year old I was quite concerned. I woke up the morning after this started unable to walk, the swelling was so painful in my feet especially. My father took me to the ER (it was a Sunday) to the dismay of my mother. I described everything that had been going on to the nurse who rolled her eyes and asked me more than once if I had anything else to add to my “laundry list” of symptoms. Then they admitted me, did tons of tests, and gave me some steroids to take down the swelling. We waited there for hours, and then were asked to leave. I had to call multiple times the next two weeks for results, and see my doctor. When I did he refused to tell me what tests were done since “I wouldn’t understand anyway” and simply told me nothing was abnormal. Just another virus. They tell me everything is “just a virus”. Wait for it to pass. SO frustrating. (Recently I learned that I most likely have Crohn’s. I have yet to get a colonoscopy to confirm this..)
    Sorry to hear about your experience but I’m glad to know I’m not alone with bad experiences!

    • That’s TERRIBLE! I hate it when medical professionals talk down to us because they think they are so much wiser than we. Sure, you might not understand all the tests. It’s their job to explain it to me so that Iyou CAN understand it.

  8. Ugh! I do not understand why hospitals have to be a worse experience than they are already likely to be. My story won’t win, but I will share anyway. It is the story of how they gave me needlephobia. I have never liked injections, but I would challenge anyone to go through this and not become averse!

    I have arthritis, since I was about 20 which sucks. It took them over a year to work out what was wrong because it’s a weird type that doesn’t show up in the standard blood test. When they worked out what it was, I had to stay in hospital for a couple of weeks for various treatments, one of which was steroid joint injections in my elbows. These are not fun, especially for someone who is not keen on injections. The needle is very big as it has to go through the cartilage around the joint and once in it feels like the joint is being slowly inflated like a balloon. But that was not the cause of the phobia.

    The injections may have helped a bit for a short while, but any benefits wore off, so they scheduled more. Bear in mind that at this time I am quite a young 20, was at uni but had to come home and go back to being dependent on my parents again, had no energy (one day I was awake for one hour and the next for three at its worst) and had just been told I have a crippling disease with horrible treatments, so quite vulnerable. My Dad took me to this appointment.

    I was kind of OK in the waiting room, with my Dad and some magazines, dreading the treatment, but having some distractions. Then I am told to go through into the treatment room. It is small with plain white walls, just an examination bed, a plastic chair or two, a tiny window with the blinds closed, a scary medical poster on the wall, a scary medical sink and a tray on wheels full of an array of really scary needles. I am alone and the door is shut. I am not quite sure how long they left me there alone with nothing to look at but the tray of scary needles, but I remember it as an hour.

    By the time they came in, the doctor and his assistant or trainee or whatever, they had to scrape me off the ceiling I was in such a state. At least the doctor had compassion then. He decided that if I was so upset at the thought of the injections and since they had not been very effective, we would not proceed. My Dad was not impressed, but as I walked back to the car to go home, I truly knew the meaning of the expression ‘walking on air’!

  9. I hate medical blogs on principle, and their parking garages are even worse.

    Your story of being demeaned by the coffee-infused morning nurse + cross-examined by the cranky lab lady rings true with me. And the fact that no one addressed your actual problems doesn’t surprise me at all. So what if you’re tired? When they have a diagnosis they like, medicos don’t care about your little concerns. Or so it has been my experience.

    Sorry this happened to you.

  10. It sure can be frustrating. I am very lucky that when I was in the hospital last summer, I received excellent care, aside from them withholding food and water from me for a week, jabbing me to take blood every few hours, then adding some back in and having to repeat my name and date of birth about eleventy-thousand times. I hope they figure out how to manage your disorder.

    • They do come in at all hours of the day and night to mess with you, don’t they? It made me giggle a little at the image of them saying “We need more blood! Oops! Too much blood. Here, have a little back…” How is your recovery going?

  11. So impressed with this post. I know all about laughing when all you want to do is star fish on the floor in full tantrum mode. Your strength and grace shines through your writing even if there are dark days that make you wonder where it went

  12. I have mad sympathy for you, Heather and can relate on almost every level. I’ll spare you the details, I like to live in my sweet denial bubble. I have a serious, complicated immune disorder. I have to have IV infusions every 3 weeks, for 4 hours. Sucks. Big time. I quit them in September, wanting to dig deeper and see if holistic approaches could work… but they haven’t and maybe I’ve made things worse. I’m in Israel right now, and sadly, dreaming of my next IV, when I’ll feel a little less exhausted and run down. This stuff sucks, and I’m so sorry you can’t just take care of adorable baby turtles and pass on this particular ride. Again, mad sympathy. xox

    • I’m doing better. One day at a time. It’s becoming laughable. I hope you can find something that helps in addition to the infusions. Because it really does suck to be stuck for four hours once or twice a month when there is life to be lived!

      How is your precious grandson?

  13. The whole medical system is mucked up beyond belief and I’ve personally experience my share and seen plenty others on the receiving end, so you have my heart felt sympathies. So very glad you are feeling better!! As Count Rugen said in the Princess Bride — “If you haven’t got your health, you haven’t got anything!”

  14. I don’t go to doctors, so no medical stories good or bad. And even if I did have a “worst story” to tell, I couldn’t remember it right now cuz my brain is waaaay too full of SHE-HULK RAGE SMASHING ALL THE THINGS after reading about one of yours… GRRRRRR

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