Say Something, I’m Giving up on You

Why is finding a new primary care doctor an impossible task?

I often wonder if it’s just me that has a problem with finding a reliable doctors. Perhaps it’s due to having a chronic illness? But I have no trouble when it comes to finding good specialists (although they take a while to get into) and others living with chronic illness have found great doctors along the way to take over their care. Maybe it’s because I’m “undiagnosed”. Who knows?

The worst part is I’ve experienced some new symptoms (facial flushing, random and quick onset of extreme burning from within my skin, and olfactory hallucinations) and I think I  have an idea of what’s wrong with me. But I have NO ONE to talk with about it. My current PCP blows me off and thinks I’ll never get a diagnosis because I MUST have a rare disease that only me and maybe one other person have, which is crap. And the specialists only want to discuss specifics to their specialties, so off I went trying to find a new primary care doctor.

Considering my past experiences with primary care doctors, I tried to do as much research as I could before selecting who to call. I made a list of potential doctors from my insurance provider’s website. After reading reviews online, I settled on two places. Doctor A was able to get me in for an appointment in about two days. Doctor B didn’t have anything open for two weeks. Well, it’s a start.

Dr. A came highly recommended and his specialty was internal medicine, which is supposedly ideal for patients managing chronic conditions. Considering he was the first appointment and able to get me in quickly, I had high hopes that he’d be the perfect doctor for me. I had just recently had the abnormal CT scan, so I was looking for a referral and just a general get-to-know you meeting. I brought all of my records, which are currently filling a two-inch binder  to the brim. Needless to say, it is quite heavy to carry around. His office was located in the main hospital downtown, which takes me about 20 minutes to get to (which is still better than driving hours away for my specialists). I drive around for another 25 minutes; there is no parking in the hospital lot or anywhere even close to it. I  give up and drive down side streets, parking in the first place that isn’t blocked off – two miles away. As if being dizzy and nauseated isn’t enough on the hike to his office, the binder of medical records feels like it is going to break my arms. I’m barely hanging on to the thing, trying not to pass out, as I finally head up the elevator to his office. All I can think to myself is, how in hell would I even be able to pick up my prescriptions with  the location of his office. It would definitely be a workout and not something that would make getting my care managed any easier.

I step inside the clinic and the receptionist greets me rather quickly. She get’s me all the paperwork and I’m checked-in rather quickly, especially seeing as the entire waiting room is full of people. I sit in the one empty chair on the other side of the waiting room, which technically is meant for a different practice, but I didn’t care considering the work out I just had. Within 5 minutes, they call me back to the exam room. I’m actually impressed. The nurse takes my vitals and history, which of course is extensive, and the doctor knocked on the door to see  when we’d be done. Wow, I’m not waiting on the doctor, he’s waiting on us. Excellent. He introduces himself and sits down to read my charts. I try to give him a little history, but he doesn’t seem interested in really knowing the answers. Strike 1. He asks me why I’m here. I tell him I’m looking for a new primary doctor to coordinate my care and I need a referral to a specialist because I had an abnormal CT scan that is showing Nutcracker Syndrome. He asks me if I have said CT scan report, which I don’t, because my GI doc sent it to my current PCP, who of course can never can keep their fax machine working. So I explain they’re mailing me a copy but it hasn’t arrived yet. He begins to talk bad about the hospital in Denver and how it has to be their fault my current PCP didn’t receive the report. I’m surprised, considering they are the only people have even remotely tried to find out what is wrong with me and communication with them has been the smoothest I’ve dealt with so far. Not to mention my current PCP’s long history of incompetency. Strike 2.  After discussing the scan, he begins to argue with me that Nutcracker Syndrome has nothing to do with the kidney vein and that it only has to do with the duodenum. NOT TRUE. While what he is talking about does sometimes get the nickname Nutcracker Syndrome, OFFICIAL Nutcracker Syndrome is directly about the renal vein. Even Google can tell you that. Strike 3.  I leave and make the two mile trek back to my car, exhausted. A week later Dr. A’s office calls for a follow-up appointment, but I declined. I was disappointed, but knew I had an appointment with Dr. B coming up in a couple of weeks.

The following day after appointment with Dr. A, Dr. B’s office calls asking if I can change my appointment to the next day. They didn’t really give a reason as to why, but I had nothing scheduled so I obliged. What’s one day? I’ve only been suffering for many years now anyways. What could it hurt? Appointment day finally arrives and luckily their office is in a slightly more convenient part of town. I pull up and there is TONS of parking. Thank god. I carry my massive binder full of records inside and was impressed with how clean and nice it was inside, considering it was a family practice. Everything was brand new and there was only one other person in the over-sized waiting room. The receptionists are overly friendly and they get me checked in rather quickly. After filling out my paperwork, I take a seat. Within 5 minutes of my arrival, a man comes out of one of the exam rooms and begins screaming at one of the receptionists. “He has to get to work”. “He’s been sitting in the room for over an hour”. They offered to reschedule him since he had somewhere to be, but he complained that it took him three weeks to get this appointment. “He needs to be seen NOW!” I thought the receptionist actually handled him rather well, considering he was inches away as he yelled in her face. Ridiculous. I always laugh at these patients as they obviously aren’t suffering from any type of chronic illness and actually think they can get in and out quick. Good luck. He finally realizes that his yelling isn’t helping to move things along any faster, so he surrenders himself back to his exam room.

As I wait, I’m organizing my medical notes, as they were a mess from so many doctors digging through them, picking and choosing what they thought to be relevant. Time goes by and I start to acknowledge the wait really does seem kinda long. I look at the clock. My appointment was at 10:00 AM and it’s now 10:45. The couple in front of me is just now getting called back. Uh, oh. I try remain patient but by now I’m starting to get a little mad and I am out of things to do.  I contemplate leaving, but know it’ll be weeks if I have to try another office. Plus more research, more phone calls, etc. I think hey, maybe it’s an off day. It happens. Finally at 11:15, an hour and fifteen minutes PAST my appointment time, the nurse takes me back. Strike 1.

The nurse apologizes for the wait, it’s been a crazy “weird” day. OK, it happens. I look around, she hasn’t changed the sheet on the bed yet. Um. OK. What else hasn’t been cleaned? Gross. She starts off by asking me what medications I’m currently taking. I have a list, but she just wants me to tell her, so I do. Granted, it’s not the shortest list, but it took her 30 minutes to put it into the computer. Really? I tell her she looks familiar, like I’ve seen her before, which is true, but I’m also baiting to see if she’s a newbie. She says she has worked in multiple medical offices before, she names them (none of which I’ve been to, thank god) but has been at this clinic over a year. So nope, not a newbie.  She finally gets around to taking my vitals. My blood pressure is too low to read. Odd. She tries again, but it still seems real low. She gives up, says she’s having a bad day, and tells me that the doctor will be in shortly.Strike 2 . So again, I wait.

And I wait. And I’m pacing around the room because I’m tired and nauseous and I’ve been stuck in these uncomfortable chairs for too long. Just as I’m starting to feel trapped in this tiny room, the doctor walks in. Again, she’s apologizing for the wait. I say it happens. She’s an older, hippie looking woman and tells me to just call her Betty. OK Betty. She asks me why I’m in today. I explain I’m looking for a new PCP who can manage my care and I need a referral for the abnormal CT scan. She starts asking me my history and symptoms, but as I go on , she tells me to hold up. That’s too much for one visit; like I expected her to perform a miracle and fix everything right here, right now, and with barely any history. But she’s at least nice about. She pulls back my sweater to get a closer look at my shirt, “Oh I just love your top. Did you get it at a head shop?” We’re in the middle of an exam, if you can call it that. And I mean, it is kinda boho/indie in style but no. “Nope, just at a boutique downtown.” She explains she loves that kind of style, she lived in Manitou Springs for a long time. Yup, definitely a hippie. (Look up Manitou Springs if you’re not familiar. It’s one of my favorite towns in Colorado, but full of some special people for sure.) She tells me to give her a week to go through my giant binder of records, which she wants to the receptionists to scan, and she’ll call me to do a referral and set up a “real appointment” or whatever that means. 

She hands the binder over to the receptionist, who surprisingly didn’t have the look of death or hate on her face when she see the amount of documents she is going to have to scan. Dr. B hugs me, says she’s sorry I’m sick, that we’ll get answers, and she’ll call in a week once she has reviewed everything. She thanks me for being one of the “nice” patients. Um, OK. You’re welcome? It takes the receptionist about 30 to 40 minutes to scan my documents and I walk out of the clinic at 1:55 PM. Had I really been there for almost 4 hours?!?!?!?  When I left, I wasn’t really sure how I felt about my experience. It was a LONG wait. But they were nice and it honestly wasn’t any worse than your current PCP, who also makes you wait hours at a time. They didn’t even do an examination. But she wants to see all your records, maybe she is just thorough. She seems like she wants to help… maybe? I decide to give it until she calls me to see how I really feel. It’s only a week, after all, and I’ve been sick for years. What’s another week? 

So I saw Dr. B on Thursday, April 23. When I hadn’t heard from her by the following Thursday, I decided to call this past Friday morning for update. I’m on hold for about 10 minutes when it’s automatically connected to voice mail. I leave a message and go about my day. By that afternoon, I hadn’t heard anything, I assumed they’re busy, but I just want an update so I called again to make sure they received my message. At least some reassurance Betty is working on it and remembered me. I get the receptionist this time, she states they did get my message and the doctor has been really busy but will call me later. OK, no problem. Doctors do get very busy. I get it. I don’t get a call and then it goes into the weekend. This morning I call and leave another message. No call back. Strike 3.  I’m going to call on Wednesday, since tomorrow I have my surgery. But if I do not get a call back then, they’ll  have a message from me asking them to destroy my medical records. I’m over it, I get inadequate care from my current PCP, and at least then I don’t have to start completely over again. It’s just so very frustrating. And huge waste of what little time I have currently.

Shortly after all this mess, I was browsing around on Pinterest when I came across a meme from The Doctors TV (posted above) saying Don’t be Afraid to “Date” your doctor. Oh my god. That is exactly what the search for a new PCP is like!!!! Especially when you have a chronic illness. I guess in some ways it IS  like entering a relationship with your doctor, considering the amount of time and trust you build with one another. And breaking up with your doctor is almost just as hard, given the past you have built with them. Even if you know it’s best for you both to cut ties with one another, it doesn’t make the process any easier. You just get pushed back into the “dating pool”.  I know ultimately I  do need to find a new primary doctor, but as with any relationship, I’m not going to settle down with just anybody and keep repeating the past. I don’t expect my doctor to be perfect, but I do expect some level of respect. I know I’m a lot to handle, in both relationships and medical care, but I know there is someone out there better than this for me and my illness.

There’s plenty of doctoral degrees in the medical care “sea” and I’ll keep waiting for the perfect catch. 

Say something, I’m giving up on you
I’ll be the one if you want me to
Anywhere I would’ve followed you
Say something, I’m giving up on you
And I…I’m feeling so small
It was over my head
I know nothing at all
And I…will stumble and fall
I’m still learning to love
Just starting to crawl
Say something, I’m giving up on you
I’m sorry that I couldn’t get to you
Anywhere I would’ve followed you
Say something, I’m giving up on you
And I…will swallow my pride
You’re the one that I love
And I’m saying goodbye

13 thoughts on “Say Something, I’m Giving up on You

  1. autoimmunelinda says:

    Hi Nikki, I’m Linda. & boy do I ever feel your pain! Figuratively & literally. I loved your blog about finding a new doc, it’s a night mare. I am so sorry you are going through this,I hope they are able to diagnose you soon,so at least you will have some basis to work with. I have been through so many crappy docs in my years of chronic illness that I do get it. But no one can walk in your shoes no matter what they are going through or have been through. I will try to keep up with you to see how you do.Feel free to message me anytime,on here or my Facebook page
    We have to there to support one another…

    Liked by 1 person

      • autoimmunelinda says:

        You are so welcome,If I can help one person gain some insite to their illness I will have done my job.I hope whatever you are dealing with, you are able to obtain the help you need without too much drama.The best of luck to you….


  2. itsapotslife says:

    I really think that PCP’s are afraid of most patients with chronic illnesses. Especially those of us who suffer from the “invisible illness”. I’ve gone through so many PCP’s in the last few years I’ve nearly lost count! I think that my luck has finally changed though, I’ve found a new PCP who appears to like a challenge. He hasn’t fed me the line of “I’m sorry, I just cannot help you” that so many others have in the past and I’ve vomited, passed out, and was totally unresponsive once in his office. I think he’s a trooper. Will be sending positive thoughts your way and fingers crossed that you’ll find a good PCP to help you!


      • sexinthekitchensink says:

        Yes I am very fortunate. My state is one of the many with medical marijuana laws legalizing it as medication. It has been legal for five yrs.After everyone nagging me about this for at least 3 yrs! I got so angry last month as I had constant chronic pain everyday and nobody was helping me I went to a clinic and applied. Endometriosis is an approved condition. I learned on May 2 I am approved for a medical id state issued card. This will help me greatly. I am very thankful.


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