The Good Patient (Part 1 of 2)

It’s been nice to have a break from normal life for a few weeks during the holidays. No school. No medical appointments. Perfect, right?

Except for the fact that I spent most of my break in bed with a giant flare.

Total bummer.

Now, with the New Year upon us already, life is reverting back to its old, crazy self – my so-called “normal”. Three medical appointments this week, but luckily no tests. Also, need to get my mind ready to start back at school next week, finish all of my To-Do projects, and organize my medical management for the New Year, which I, of course, waited until my break to do. Needless-to-say, most of it didn’t get done.

Still, despite being super sick for weeks, I was able to finish one thing from my list that I promised myself I would do over break — finish a book from my personal reading list. Thankfully, this I was able to do from the comfort of my bed.

In all fairness, though, I really only had half of the book left to read since I had started it over the summer. Just haven’t had the time or the mind to finish it — until recently. I carefully opened the book to the page that I marked many moons ago,  which opened up to Chapter 7 in  When You’re Sick and Don’t Know Why (1991). Such a Fitting title, right?

I guess you can imagine why I wanted to read this. Before I even made it halfway down the page, the book already had  me thinking. I thought that maybe I shouldn’t finish this book after all (or at least not during my vacation from being a professional patient), but continued reading anyway.

The first line in the chapter read:

Are you a good patient?

Of course I am, I thought, perhaps too naively.

At least, I think I’m a pretty good patient anyways.

  1. I educate myself  as much as possible about my health conditions.
  2. I’m always on time for appointments — if not early.
  3. I ask a ton of questions.
  4. I am polite and patient, even when I am annoyed or frustrated.
  5. I am an active participant in my healthcare decisions – at least, I think.

That’s pretty good if I do say so myself.  But do my doctor’s appreciate these qualities in me? Maybe, maybe not. Or at least not all of them do anyway.

I’m quickly reminded about all the times I had been let down by my doctors: told that my symptoms were all in my head; that it was just anxiety or depression — even dehydration. Sometimes I wonder who actually takes me seriously.

Perhaps they treated me this way because of the type of patient I was being? 

The more I thought about it, the more I began to question myself. 

Am I really a good patient or do I just think that I am? 

It’s too hard to tell. I have enough trouble figuring out what each doctor is thinking, especially when they say one thing and write something different in my charts. That, alone, is bad enough. And, just like anything else, I assume each doctor has their own preferences and ideas about “the perfect patient”. I’m sure some doctors appreciate my willingness and eagerness I put into my healthcare — some have even complimented me on my level of organization on my medical records. However, I bet most do not because of the fact that I am somewhat “needy” as a chronic illness patient and being needy requires a lot more “work” than the average patient.

I was interested in what more the authors of the book had to say about this topic. Mainly, what EXACTLY defines whether a patient is good or not? And what makes one type of patient better than another?

The stereotype that comes to mind is someone who doesn’t
complain a lot, follows the doctor’s orders to the letter, and doesn’t ask too many questions. He or she is submissive and
conforms to the system.

(Hanner, Witek, & Clift, 1991, p. 95)

Of course, silly me. That would be the obvious answer, wouldn’t it? At least from a doctor’s perspective anyway.

Basically —Compliant— in all aspects of the word.

Definition of compliant in English: adjective

1. Inclined to agree with others or obey rules, especially to an excessive degree; acquiescent

1.1 Meeting or in accordance with rules or standards.

2. Physics & MedicineHaving the property of compliance.

(“Compliant”, 1989)
Let’s see here:
  1. I often am inclined to be agreeable with my doctors.
  2. I always follow the rules.
  3. I am compliant with my medications and recommended treatment plans.
  4. I follow the system, even it I don’t agree with it.
    • Why? Because I have no choice — play the game or you get nowhere in healthcare. That’s just the way it is.
  5. I don’t show anger or frustration to anyone in the healthcare profession, even if I am.

However:

  1. I do ASK questions and state my concerns over recommended medications or treatment plans and why they are necessary.
  2. I will stay on top of you to do your job, especially if things aren’t getting done.
  3. I bring others with me to appointments who can help me with questions or remember what the doctor said.
  4. I come bearing hundreds of pages of medical notes and lab results.
    • I must clarify: If I don’t bring them, then I am asked about them or you want a copy. It’s just easier to have it on hand.
  5. I more than likely have done more research on my diagnoses than you ever learned about it in medical school or even in practice, and I will correct you if something you say is inaccurate.
    • I will also quote recent statistics taken from peer-reviewed journals. I am THAT good. Also, don’t be surprised if I hand you a copy of a research article to reference.

Now I really wasn’t so sure about myself.

The authors then go on by saying:

In fact, the word patient means to endure suffering without complaining.

(Hanner, Witek, & Clift, 1991, p. 95)

But I am so tired of being patient

and of being a patient…

How long am I supposed to suffer? 

Haven’t I suffered enough in my own body?

Many doctor’s prefer patients who don’t make waves – simply because they require less time.

(Hanner, Witek, & Clift, 1991, p. 95)

I understand not making waves, but what about small ripples?

Modern clinics and hospitals focus on efficiency. The less time spent with each patient, the more patients processed in a day. The doctor takes charge by telling the patient what to do rather than offering alternatives.

(Hanner, Witek, & Clift, 1991, p. 95)

Okay, so now we’re getting to the real answer here.

Trust me — I get it. Our healthcare system is broken and is pushing doctors more and more each day. I can only imagine how hard doctors work each and every day, not to mention the pressures and burdens they must feel at times. In one of my posts from earlier last year, I Know the Shame in Your Defeat, I even wrote:

Having come from veterinary medicine and working with many doctors over the years (just not of the human kind), I do know how stressful and frustrating your job is on a day-to-day basis. That is the reason I’ve given so much slack to those working in the healthcare industry, especially my doctors. It’s not an easy job, both mentally and physically. But I also can’t accept the care I’ve been given either. My animals should not get BETTER care than me, I’m sorry.

There’s no excuse. I agree there needs to be a change in how things are done, but it isn’t MY fault. Nor is it any other patient’s. Don’t take it out on us or get frustrated with us for expected a certain level of care, despite your time limitations.

Patients are gradually becoming more aggressive, demanding involvement in decisions. Some doctors are beginning to realize that keeping patients in the dark is not in the best interest of either party.

When patients share responsibility for decisions, they are less likely to blame the medical profession when results are not what they hoped for. When patients are aware of details concerning tests and records, they are more likely to catch mistakes that have been overlooked.

(Hanner, Witek, & Clift, 1991, p. 95)

This just makes obvious sense — at least, to me.

I know that I am responsible for my health and healthcare management. I also know that most doctors don’t have time to do it for me. It goes without saying; if not me, who? 

If I don’t fit all the required qualities to be considered a “good patient”, am I a bad patient then? 

And what qualities labels as a patient as bad?

Stay tuned for Part 2: The Bad Patient to find out


References:

Compliant. (1989). In Oxford English online dictionary (2nd ed.). Retrieved from http://www.oxforddictionaries.com/us/definition/american_english/compliant

Hanner, L., Witek, J.J., & Clift, R.B. (1991). When You’re Sick and Don’t Know Why. Minneapolis, MN: DCI Publishing.

2015 in review

 

While I can’t say that 2015 was a “good year” for me or my health, and there were a lot of disappointments, frustrations, and a rollercoaster of emotions that come with being a professional patient, I did get farther than I ever had been in my search for a diagnosis.

That has to mean something right?

Although some of you may have seen this on my personal Facebook, most of you have not, and thought it would be worth sharing here as well so you can get an idea of what my 2015 really looked liked.


From Facebook:

After looking at my year in review, I noticed I only had pictures from many years ago. Mostly, I’ve kept photos of this year off my personal facebook. But I think it’s important to share what my year really looked like.

I’ve had hundreds of medical appointments this year: doctors visits, medical tests, procedures, etc. I’ve been on 30 different drugs to help my symptoms. I’ve been told by doctors, insurance, and disability that I’m not sick. My diagnoses have changed a number of times and I’ve stumped a number of doctors, many of them looking into Google just to understand my disease.

I don’t post this for pity. In fact, I post for the opposite. Despite losing my job, friends, and overall quality of life this year, I’ve gotten (almost) straight A’s in school. I’ve advocated for patients just like me. I’ve talked with numerous people in and out of the U.S., some of who are worse off than me and many who have fought some of the same battles. Some of them lost their life to their illness.

This year has been hell, for me and those that I love, but I’ve come a long way and have learned so much. I’ve learned that I am strong and can survive almost anything.

I became a warrior.

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I know there’s still so much more to do and other things to look into but I really feel like the new year will bring with it all the remaining answers that I need to solve my medical mystery. This has been a hard journey but I’m ready to start moving forward and hopefully regain my life in 2016.

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I can’t take this anymore and I’m almost pretty sure I’ve been here before…

I’m tired of having to prove

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HOW SICK I AM…

It seems like a never-ending battle at this point. Although I have multiple diagnoses currently, I am continually asked to provide the evidence that I am, in fact, actually sick. It’s becoming exhausting.

First it was with the doctor’s, claiming my symptoms to be all in my head.

Then it was with Short Term Disability, where I was denied initially and told that “I am not actually sick”. They then approved me, of course, with more “evidence” – AKA spending my free time in hospitals, going from doctor to doctor, to find even a clue to the cause of my mysterious symptoms.

Next, SSDI wanted me to not only prove that I was sick, but sick enough – according to their standards – to be disabled. Months and hundreds upon hundreds of pages of medical records, I am told I am NOT disabled because “despite my substantial limitations and exceptionally large medical record,  somewhere out there is a flexible job in which I can lift a single piece of paper for an hour or so a day” (Their words, not mine).

After this, I finally got to meet with a surgeon who could supposedly help me. He said that while he does see the vascular compressions and they COULD POSSIBLY be the cause of all my symptoms, a CT scan and CT Angiography are not enough proof that I am actually sick – because it could be coincidence, after all. He told me to either come back with more proof or keep searching for another answer.

The vascular surgeon I saw before him also told me the same thing. Meanwhile, my current vascular surgeon is “worried treating me will make everything worse” – like it could potentially get better on its own? I’ve been having symptoms over 20 years, so that’s highly doubtful.

I’m in the process of converting my Short Term Disability into Long Term Disability – another way in which I get prove how sick I am once again.

I told my therapist that it’s like literally living through the definition of insanity – repeating the same things over and over again, expecting a different result.

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  • We’re repeating tests at this point, getting no new answers.
  • No treatment either, just nonstop appointments and medical tests.
  • Where do I “keep searching”?

So far, I’ve seen: 

Multiple Primary Care doctors

Multiple Gastroenterologists

Multiple Cardiologists

Multiple Vascular Surgeons

Multiple Psychiatrist/Psychologists/Social Workers

Multiple Urgent Care Clinics/Hospitals

Multiple Gynecologists

Multiple Dermatologists

Multiple Chiropractors

Neurologist

Immunologist

Rheumatologist

Urologist

GI Surgeon

A Psychic Medium

When does this madness end?

Does it ever end? Will I ever get a break? 

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When is it finally time to give up?

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In the meantime, I am getting worse – and more systems are becoming affected. Not to mention that two young girls that belonged to one of my online support groups passed away last weekend (both of which were diagnosed as having one of the “controversial” vascular compression syndromes that may or may not be causing my symptoms). One of their stories, sadly, hit a little too close to home.

Her name was Alyssa Landrith and she was only 18 years old. She fought the medical system for many years, told it was all in her head and that she suffered from anorexia. Even after her SMA Syndrome diagnosis, she still had to fight for treatment. As a result, she left this world far too soon – unnecessarily. Not surprisingly, her mother’s announcement was heartbreaking to all of us in the SMA support group. However, the blow is even harder because Alyssa represents a small part of each one of us that are fighting this illness.

Her story is my story – and other people’s stories. 


Pictures from the SMAS support group and Alyssa’s Go Fund Me Page:

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“This beautiful girl lost her life to starvation Friday evening November 6, 2015.  She was eighteen years old.  She had Superior Mesenteric Artery Syndrome and Gastroparesis, both rare digestive conditions that my daughter also is battling. Her name is Alyssa Landrith.  Her mom is Lori Landrith.

This picture was taken before the illness set in. She has slowly starved to death. She continued to get sicker, while medical institutions diagnosed her with psychological conditions (which were secondary to the digestive conditions).”

Retrieved from  Alyssa’s Go Fund Me Page


Many years ago, when I got down to 87lbs, this could have been me!

Somehow, I learned to compensate – perhaps not in the healthiest way, but it has kept me alive.

Still, the reality of living like this my whole life,

with no treatment or intervention,

is both terrifying and heartbreaking.

How do I make the doctors understand?

How do I PROVE to them that this is real?

That all the vascular compression syndromes are real?

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There’s got to be a better way. 

There’s has to be a reason to keep searching.

Maybe someday I’ll find hope once again.


“I can’t take this anymore
And I’m almost pretty sure
I’ve been here before
I can’t take this any longer
I won’t heal until I’m stronger
Strong enough to not be afraid
Of what anybody thinks
Of what anybody says
About the way
About the way I am
So I’ll wait until the day
When those feelings fade away
Then I’ll make my break

Everybody and everything I’ve known
Never taught me how to stand up on my own
Had to learn it from the one who let me go
Now I walk alone
Yeah I walk alone, yeah
I walk alone
I walk alone
I walk alone
I walk alone
I walk, oh yeah”

(Oleander – I Walk Alone)

Cause I went to hell and back just to be where I am today

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I kept hoping and praying, haunted by dreams about my upcoming vascular surgery appointment. After the last visit with a highly recommended vascular surgeon (posted here) I just knew I couldn’t handle yet another doctor making me feel completely invalidated by saying “while it appears that you do, in fact, have these vascular compressions visible in multiple scans, the syndromes don’t exist and you can’t have that many rare conditions anyway.” 326f193abca524f9e98fbd8d7140e0c1After all of this… the nonstop tests, countless doctors appointments, misdiagnosis, and judgments against my mental health status… I just knew I wouldn’t be able to handle another major disappointment. But I also can’t keep living this way either.

Figuring there’s nothing to lose at this point, I asked my cardiologist for a referral for a second opinion at our last appointment together and he gladly obliged. To my surprise, he put it in as an urgent request. Just two days later I received the call from the vascular surgeon’s scheduler with an opening for the following week. It took me almost four months to see the last surgeon so I was pretty impressed. My records, however, didn’t make it on time for how quickly they scheduled me and the doctor was going need the actual imaging, not just the reports, to do my consult so I had to reschedule. In fact, my husband had to drive me over an hour into the city on two separate occasions to physically pick up my records because the scans were done at separate hospitals. Both kept ignoring requests from both the new hospital and myself as well, despite writing “urgent” all over them. So frustrating!

Although I was nervous about starting over at a completely different hospital because I was completely comfortable and used to my current site (I really am a creature of habit), the cardiologist planned to send me to this location for the dysautonomia clinic anyway. It’s easier when my doctors are located within one location or network because of the number of specialists I have on my medical team now and it’s next to impossible to get them all to communicate with one another unless they physically working together it seems. However, this still didn’t stop my nerves about the appointment. As far as the vascular compression syndromes are concerned, this was really my last shot to find a doctor in the state who could treat these conditions. No pressure or anything.

As we pulled up, I instantly felt like the new kid in school. The campus was huge and it took us a moment to not only find the building that my appointment was in but where to park as well. We thankfully left early and gave ourselves plenty of time.

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It was a good size walk from the parking garage to the building, so I was extremely dizziness and nauseated by the time we got into the lobby on the third floor. I checked in and went to have a seat. I was amazed at the size of the lobby, it looked like there were  at least 50 people in there waiting. I had a sinking feeling come over me, stunned at the number of people who were waiting ahead of us. ‘Oh please, let them have a ton of doctors working today because I really don’t feel that good and I don’t think I can wait that long…” I also knew we had at least another hour or so drive back home to get through as well and all I wanted to do was go home and go to sleep.

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Luckily, the wait wasn’t too bad – only about 15 minutes after my scheduled appointment time when they brought me back to the exam room. The nurse took my vitals and history before she left to bring the doctor my hand-delivered scans. I assumed it would be a while so I squirmed into the most comfortable position in my chair I could find (which was not really comfortable at all) and attempted to sleep. It didn’t last long.

About five minutes later, there was a knock and the exam room door opened. That was quick… I start to get up but I’m taken aback a bit. A young gentleman (younger than me anyways) walks into the room. This doesn’t look like my doctor… I googled him. He introduces himself as being a medical student studying under my doctor. Ohhh. Right. This is a medical school after all. He seems nice enough but still…while I can appreciate the intelligence, endurance, and drive it takes to become a medical student,  I can’t help but feel slightly disappointed. Is he going to be the only one doing my consult? I have a complicated case. I’m instantly worried once again. Maybe they think it’s in my head as well and that’s why I’m only seeing a student. I’m paranoid at this point.

He takes a very short history of my symptoms, only asking a couple questions really, and then says he’ll let the doctor know. Phew. Ok. He’s just getting some information. I will be seeing the doctor then. I feel a sense of relief. Remember, I’m at the end of the road here – I need everything to be perfect. (You can’t blame me, though, for worrying after all the mess I’ve been through just getting to this point.) A few more minutes after the student left the room was there a knock on the door once again. This time, I do see my doctor (which I recognize from the internet), but nothing could have prepared me for what followed in behind him. I felt like I was going to faint…

621-00787693tFirst it was one. Then another. And another.
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One-by-one, medical students slowly filled every corner of my exam room.

And they’re all staring at me, intently.

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 Nope, not intimidating at all…

It caught me a little off-guard, honestly. Plus, I hate feeling like the center of attention. It makes me so self-conscious. I do everything in my power to have people NOT to pay attention to me. I wondered if this was normal protocol, as I had never been to a teaching hospital before. Don’t embarrass yourself, Nikki. I send a sharp look to my husband, my eyes told him the same thing I told myself. He got the point.

I tried to stay focus on what the doctor was saying, but it was really hard not being distracted. Or a little claustrophobic. With every question I answered, I saw the students take notes. I wondered what they were writing… I wondered what they thought of me. Do they think my case is interesting? Or do they think I’m crazy and making this all up? I couldn’t read their faces.

The doctor confirmed he saw everything in the scan that he saw in the radiology report. The Nutcracker Syndrome. The Superior Mesenteric Artery Syndrome. The May-Thurner Syndrome. We even all watched the scan together, where he pointed out exactly what my body was doing, where it was compressed, and how he could tell – rewinding to those parts so I could watch it more closely. He explained everything as we watched the iodine flow down toward my left kidney, only to move itself back out of the renal vein (instead of through it) and into the lumbar spine/ plexus. He said that my body learned to adapt to the compression by creating collateral pathways to compensate for the lack of blood flow, almost like a survival mechanism. Wow. The human body truly is a magical thing.

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He also asked a ton of questions – specific questions – and wanted detailed answers, such as how it feels when this happens or what happens after that? I provided him with situations and stories. I pointed to where it happens. I told him how it hurts. I gave him everything I could think of at the time.

As I explained each and ever pain, he listened. 

With every detail, the students kept writing.

I could hear their pages turning in the background. When it was quiet and I had given every account that I could, the doctor turned to his students, “So, do we all agree with  pelvic congestion syndrome?” They all nod their heads in agreement. He asked me if I’ve heard of it, I had but hadn’t studied into too much but it honestly wasn’t a shock because it’s a very common cause of pelvic pain and many patients with either Nutcracker Syndrome or May-Thurner Syndrome have also been diagnosed with it as well. He told me to go home and google it to make sure it fit. Um, ok. No doctor has told me THAT before but sure. So I did.


The doctor says they are going to schedule venogram to confirm the diagnosis. If they can, they’ll just fix it while they are in there. They’re also going to test the pressures of the other the compressions and see if there are any further abnormalities during the procedure as well. Perfect, we’re getting somewhere.

I still had one more question, though, but I was almost afraid to ask. But I knew I needed to. I took a deep breath…

So, do I definitely have all of these syndromes?

The SMAS, NCS, MTS, and now possibly PVCS?

They actually exist and I have them?

The doctor then gave me the most profound answer I’ve heard to date.

He said:

“It doesn’t matter what you want to name them.

It’s clearly happening in your scans, you saw it.

Call it whatever you want.

 Your symptoms, as you described them,

are EXACTLY what one would EXPECT you to feel.

The tests prove it.”

Finally!

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He finishes by saying that they are going to conference on Monday morning. Other doctors and students will watch my scans again and make sure nothing else is missed. If they do find something, they’ll call and let me know what it was or if the treatment plan is going to change, but to otherwise go ahead with scheduling the venogram. They’ll also discuss how they want to handle the three other compression syndromes in their meeting as well. I thank him.

As I’m about to leave, one of the student’s asks if he could do an in-depth interview with me for Monday’s conference. He doesn’t want to miss anything or hear it second-hand. I obviously agree and we go through it all – again. He asks more questions and then even more based on my answers. He also offers advice about things that I could do to possibly help myself from now until [surgery]. By this point the hospital was closing down around us, almost everyone has gone home for the day. But he never rushed me once. He just continued asking his questions and listening, eager to know more and ensure that he gets my story right. He’ll never know how much that means to me, the patient.  

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When I got home I chatted with an online friend, who also happens to go to the same hospital for two of the same compression syndromes as well. I just had to know, was this how the hospital normally treat all their patients? She said no, not usually. Maybe only one or two. “But being rare gets you extra people”.  She had a large number of students during her surgery prep and throughout her recovery. They visited her every day.

It’s almost funny. When you’re undiagnosed, you hate the idea that you may not have a diagnosis because of some rare, unknown condition. You worry that nobody will ever find whatever it is and, therefore, you’ll never receive treatment to feel better. Half the time, nobody believes you anyway.

But  I guess when you do finally get that rare diagnosis, suddenly you become the ZEBRA at the aquarium. Now, you’re medically interesting. Now, you can breathe.

I may not have the easiest road ahead of me, potentially filled with major surgeries and/or lots of pain. But once again, I can say I feel hope. I can go to bed knowing that I honestly tried everything that I could to take my life back, without worrying if the doctors would ever find out what was wrong with me outside of autopsy. I finally have options. A plan of attack. My diagnosis is on paper -and- it’s not a misdiagnosis this time. It is real – I saw it with my own eyes – and so did my doctors. And they believe me.

Now, I can finally say that it was all worth it.

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And it’s a sad picture, the final blow hits you…

The chaos that surrounds a life with chronic illness never ceases to amaze me. Everything is always changing: day by day, hour by hour, minute by minute. It’s a constant game of rearranging. Not only your plans but everything you believe in  (or don’t believe in ) as well. You don’t ever dare to get comfortable because as soon as you accept one thing, even just a simple thing, something else is waiting just around the corner to shake things up once again. There really isn’t time for boredom like one might think when you’re living the sick life.

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“And it’s a sad picture, the final blow hits you
Somebody else gets what you wanted again and
You know it’s all the same, another time and place
Repeating history and you’re getting sick of it…”

I don’t know why I am continually shocked by the lack of competence at my current primary care office. You’d think I’d only be surprised when things are running smoothly considering all the problems I’ve experienced with this clinic. It’s been a gradual decline in patient care over the last year or so, although my last few visits did were a lot smoother than the ones prior. I had even decided to stop my search for a new primary care doctor because I really had hope that they were changing  for the better and that everything was starting to slowly improve. But as soon as I start to believe in my doctor again, my recent visit to the office only confirms that they really are a lost caused.  I swear, the clinic’s only ability is in ineptitude.

I was scheduled for bright and early last Monday morning. I woke up feeling awful and really didn’t feel like going, especially because I was going by myself and I had to drive there on my own since my husband had to work, all the while I could barely move or stand up due to pain.  But I knew I couldn’t miss it because it was my quarterly medication refill appointment to evaluate my current medication list. Plus, I had to schedule this appointment two months in advance and I can only imagine how far out it would be if I rescheduled.

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Luckily my PCP office is in town, so it’s not as bad as traveling for other appointments. I managed to struggle and get through the drive by myself, despite feeling nervous about it. I even arrived five minutes early, breathing a silent sigh of relief. However, as I get out of my car and start walking towards the building, a man cuts in front of me right as I’m about to get to the door. I am now forced to walk into the building right behind this man, who is not only coughing and gagging with every step he takes but is also not covering his mouth while doing so. “Inconsiderate a**h***. I know toddlers that display more manners than you…” I think to myself, but I didn’t bother to open my mouth. It’s not worth the trouble and it’ was way too early for that, even though I was feeling pretty cranky. Still,  I was honestly disgusted by the lack of courtesy this man extended to those around him. I just prayed that I wouldn’t catch whatever germs he was insistent on spreading.

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Finally, it’s my turn to check in. The receptionist looks frazzled already and they haven’t even been open a full hour yet. I almost feel bad for her… almost. She takes my co-pay and tells me to have a seat. I do, but far away on the other side of that inconsiderate cougher. I expected a long wait, given the number of patients in the waiting room but hoped they were all being seen at the urgent care side. This office can either be super quick and I’m in-and-out within 10 minutes or I’ll be there for 4 hours, there’s no in-between, so I’m usually prepared but I forgot my book this time at home. However, as I’m waiting, I’m just looking vaguely around the room until I realize that all I can see is actual filth pretty much everywhere. It’s not like I was looking hard or anything, it was just visibly THAT dirty – you couldn’t miss it.

  • There were used tissues crumpled up under the seats.
  • Spots, of what I could only assume were a variety of substances, left all over the tiles.
  • Dust and debris that had collected on both the end tables and magazine racks.
  • There were hand prints on most of the windows and the doors.
  • And a piece of gum was sticking out from the chair next to me.

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It’s obvious this place has not been cleaned or sanitized in a long time. I literally wanted to throw up, only imagining what else was there that I could not see. It sends shivers down my spine, even now.

Then, I watched as the receptionist completely ignored phone call after phone call as she was filing her nails. (Yes, that actually happened.) Her face showed annoyance every single time a new call would ring in. Um, hello? Isn’t that  your job? Again, just to reiterate, the clinic had only been open for about an hour at this point. I would have smacked myself in the head at this point, but I worried about touching my hands to my face given the state of my surroundings.

As my OCD started to take over and I began losing all of my cognitive ability to have any rational thoughts at this point (My mind was prompting me to either run widely out of the building or set the place on fire: “I’m sorry officer, it was for the safety of all humanity, I swear…”), the receptionist called me up to the front desk.

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She handed me a piece of paper and said, “they don’t need to see you today. Here’s your prescription.” Wait.. what? I am really confused. I need to actually see the doctor today. That’s why I’m here. But as I was gathering my thoughts, she must have noticed that either my head cock itself to one side or that I displayed a baffled expression across my face because she blatantly followed it up with, “your doctor isn’t here anymore, so another doctor is giving you this one-time script.”  I’m literally left speechless.

Hold up, wait just a minute.

Did you just say that my doctor is no longer here?

MY primary care doctor is gone?

Like gone, gone? Forever?

Where did she go?

Did she quit? Was she fired?

What happened?

What’s going to happen to my care? 

I have paperwork for my disability claims that need to be completed here soon.

I need a test that my GI doctor wants done to be ordered down here in town – I need a referral.

I also needed to adjust the levels of some of these medications today.

What am I supposed to do now?

I was in literal shock. After all of this, all we’ve been through… she’s just gone? I felt the panic slowly rising inside of me.  She then informs me that the manager will call me later on that day and they have no idea what they are going to be doing with all of my doctor’s patients. Before I can say a word, she yells for the next person to come to the front desk. I figured it was better to talk to the manager anyway, what is the receptionist with a bad attitude going to do for me anyways. I take my prescription and head home.

As soon as I was in my car and driving away, I was suddenly struck by feelings of anger and disappointment.

Why didn’t they call me BEFORE the appointment?

They just wasted my time.

Why did I have to wait so long?

Why did she even bother to check me in?

And they took my co-pay, for what?

I didn’t see a doctor.

Why couldn’t they schedule me another appointment with the other doctor until they figure this all out?

What a giant mess this is going to be!

Now I have to figure something else out and start the process all over again with a new doctor.

Perfect timing. Just my luck.

Well, at least I got my prescription for this month.

I decided to drop it off at the pharmacy to get filled on my way home. At least then something would get accomplished that day. When I handed it to the pharmacy tech, who knows me all too well at this point, he looked confused as he’s entered it into the computer. He then stepped away for a minute to chat with the main pharmacist working that day. As he walked back over, he handed me the paper with my prescription on it because they can’t legally take it as written. Are you kidding me? Evidently the name of the doctor who signed it and the DEA number did not match. I asked if they could call the doctor to verify it but because of the type of medication that  it was for I had  to have a new one written up – correctly. *sigh* I walked back to my car and called over to the clinic, in hopes that they can have it prepared by the time I drive back over there for a new one. After multiple rings, someone finally answered. I explained the situation and she tells me she needs to connect me to someone else. The phone then only rang a single time before going to some random voicemail message. I hang up.

My blood was boiling the entire drive back there, thinking all the things I was going to say to these people. I angrily pulled into the parking lot, slammed my car door, and stomped into the waiting room. However, before I even approached the front desk I heard a woman screaming from the top of her lungs. No sooner did I round the corner that I saw the woman who was yelling and that it was directed toward the receptionist from earlier. There were at least 4 or 5 patients behind the woman, all angrily cursing at the receptionist as well. It was like a mob scene in there and I half expected for a full-out riot to break out, but it never did. I patiently waited as everyone finished  venting their frustrations at (not to) the receptionist before they each walked away one-by-one. At least I’m not the only one who got screwed here. Just imagine how many people this situation actually affects. They shouldn’t treat their patients this way! At this time, however, someone else walks up to front desk to give the first receptionist a break (probably well needed, I’m sure). I, again, politely tell her what’s going on and she said she’d be right back.

While waiting, I decide to let the whole thing, including my own built up anger, just go. What can I do about it anyways? When she returned, she handed me a corrected script. I told her to “have a nice day” (although I knew that she probably wouldn’t. Not the way that day started anyway). Once again, I pull away… only this time I knew in my heart it would be my last.

“Because these things will change
Can you feel it now?
These walls that they put up to hold us back will fall down
It’s a revolution, the time will come
For us to finally win
And we’ll sing hallelujah, we’ll sing hallelujah”

The manager never did call about rescheduling my appointment as promised. I did my due diligence by following up with a call to the clinic on Monday and asked reschedule, but I was told that they won’t be taking any of my old doctor’s patient’s at this time. I did ask to see the other doctor, telling her about the paperwork and medication refills I would be needing very soon. She said she would leave a message with the old doctor’s nurses to see what they could do. One of the nurses did call me today, telling me my prescription was ready for pick up. I politely let her know that I had already received that one but was trying to schedule an appointment for next month. She told me they have no doctor to schedule me with, they are all gone, just the director who is filling in for the time being until new doctors are hired. She also said I can call when I need them and they’ll see who is there at that time. I thank her, but only because she was the only one who ever knew what was going on half of the time, and hang up the phone. I should have left this practice months ago anyway. Perhaps this whole situation is truly a blessing in disguise.

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Thankfully I had scheduled myself with a completely different clinic shortly after I got home that day. It was for three weeks out, earliest they could get me in, but they sounded a lot more organized (at least over the phone). Although this is probably the worst timing given all that’s currently going on with further testing and new specialty visits, not to mention work and disability, I still feel that this is probably for the best overall. For not only my personal health and safety but both my mental and emotional status as well. It’s a shame that what was once such a great clinic (with an amazing doctor who listened and believed in me) turned into such a dysfunctional mess. I still don’t know if my doctor quit or got fired (or who knows what else) since no one is talking, but I wouldn’t blame her for leaving either way.

Ultimately, life continues to move forward regardless of any setbacks. I now have some diagnoses. Treatment (even if it is mild) has been initiated. My doctor’s finally believe in me now. And there’s finally hope for the future once again.

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Lyrics quoted: “Changes” by Tayor Swift