Left Behind

Let me preface: I’ve always trusted my doctors. I listened, tried, and continued to make an effort to be an active patient in my healthcare program. But I feel disappointed and let down.  Or rather, left behind. After this last appointment with my PCP , to discuss going on short-term disability by working PT so I can attend my appointments and school, and maintain my job, as recently my symptoms have caused me to miss more time than I am comfortable with. It has me wondering, when does one reach a point when it is time to fire their doctor?

Let me back up and give a history to explain my point of view here. When I started looking for a diagnosis five years ago, I went to a practice that had a large group of doctors, as well as an urgent care. This was extremely convenient for scheduling appointments. One doctor would come up with a theory, test, and when it would come back normal, they would send me to another doctor in hopes that they had an idea of what was wrong. Three years and eight doctors later, in addition to the multitude of urgent care visits, there were still no answers. Although they didn’t have answers for me, they at least tried, returned my calls, offered suggestions, and were organized with my care.  But after my last test on my heart, a 3D echo because the doctor once again heard a problem with my heart, decided that since I was on disability Medicaid (which I pay for MORE than private insurance), that he wouldn’t give me the results of my test because I wasn’t on an acceptable insurance. Not even over the phone. This led me to my current doctor, but more about that later.

During the same time, I saw another doctor to get a second opinion. While she listened to my story and offered to order some additional blood tests, I wasn’t really fan of going to the office. The receptionists always seemed frustrated and the nurses were less than nice. I received my blood work in the mail, with a note stating that my glucose was low and that explained all my symptoms. So I let it go. I called to ask for my medical record to bring to my current doctor and they fought with me about getting copies of the records. I told them they couldn’t refuse me MY medical records and after a long fight, I could have them if I PAID $30 for them to make copies. I agreed. When I got the 10 pages, with lab results, I was in shock. This lady didn’t listen to me, putting symptoms and family history that was untrue and inaccurate. She also made notes and highlighted that I had tattoos and piercings. The last straw was when I read that she thought all my symptoms were made up in my head and that I could use some therapy. She never even had the balls to tell me this to my face. I could see why they didn’t want to release my records. The only rebuttal I had was to leave her a negative review on the web and vowed to never go to this practice again.

The urgent care I currently go to is amazing and I truly believe MOST of their doctors are amazing and helpful. However, that being said, there is one doctor there that I refuse to see. It started back in 2010 when I went to this particular doctor at the start of my stomach troubles, as I thought I may have had a stomach virus that was going around and my employment at the time required a doctor’s note for every missed day of work. Fast forward to summer 2014, I happen to see this same doctor again. I mention that I have been having weird symptoms and stomach pain for a while and that I am doing testing, but am in to see him that day because I had another sinus infection coming on and my current doctor didn’t have any appointments. He reminded me that he saw me years prior with similar stomach pain and said that he used to be a gastroenterologist prior to moving in to urgent care. He advised me that based on my symptoms, I must have a psychosomatic disorder and would recommend therapy, as well as I need to come to terms with the fact that it is all in my head. While I give him credit for saying it to my face, this doctor had no medical history or background, barely completed an exam, and brought me to tears with how he made me feel. On top of that, for my mild infection, decided to prescribe me antibiotics that were used to treat ANTHRAX and came with a strong FDA warning. Never again. 

So while these doctors are making me feel like I am a headcase, I enroll in therapy. They have no idea how to help me because they say my anxiety at this point is normal based on my symptoms and the stress of not knowing what is wrong. After a full year, they dismiss me. In addition, I start seeing a dermatologist because my symptoms are now becoming systemic and my PCP sends me to dermatology to hopefully find an answer, as the disease is now coming out in my skin. The dermatologist diagnoses livedo reticularis and nevus anemicus and advises that the only way to cure these two would be by finding the underlying problem. He refers me back to my PCP with notes to visit rhuematology based on my current symptom list that is now ever-growing. PCP has no problem and sends me with the recommended referral.

I send over the referral to rhuematology and wait. This was August 2014. By September, still hadn’t heard back. I call, they say the DR refuses to see me because he doesn’t believe my symptoms per my medical notes and has referred me to dermatology. I advise the nurse that it was dermatology who referred me to them, and it would have been nice to get a call. She says she’ll let the doctor know and he’ll re-review my case. Now October, no response. I call, again, back to dermatology. I re-explain, they resubmit, no response. Again back to dermatology. After calling every week until the end of November, they say the DR MAY SEE ME IF I go get a second opinion from his dermatologist. I agree. As I’m scheduling, the dermatology nurse is baffled why THEY are seeing me, when clearly I should be going to rhuematology and I already have been to a dermatologist. But they agree. They can see me in April 2015. I schedule, as the rhuematologist will ONLY see me if I do this, and he’s the ONLY rhuematlogist in my town who takes my insurance and is accepting patients. Great. So after waiting 8 months, I’m still waiting for this appointment with dermatology to hopefully see the doctor I originally was referred to. Perfect.

So now all these crazy symptoms are popping up, I’m in a new job, just started back in school and I’m fighting every day to maintain some kind of normal. As I’m researching, I come across a post about undiagnosed illnesses and how someone received help from National Jewish Hospital. I send them a letter and hope that they can help.

So now, with my current PCP, I was told she was very thorough and helpful with the undiagnosed and she took my insurance. When I started with her February 2014, she was a breath of fresh air. She had new ideas, new meds, new tests. She BELIEVED me. Which after all I’ve been through, I couldn’t ask for more. But as months went by and tests came back normal, and in addition changes in staff, visiting her office became different. That brings us to now. They don’t return calls anymore, I have to beg to speak to someone to get an answer. It takes weeks to get an appointment. The office manager is rude to me over the phone. I never know when my prescriptions are ready or test results are back. It’s been very frustrating. I am always calm, kind and nice, but I’m losing my patience. At my last visit, the nurse didn’t even ask my why I was there. Finally the doc just comes in, and ask me what I want. I say I talked to my manager and I’d like to do short-term disability while I’m getting all these tests and new meds, as I’m struggling to manage everything and I am violently sick everyday. She says ok, but then proceeds to get an attitude with me when I can’t tell her what diagnosis to put down, she has no idea when I’ll be better because I’m not diagnosed, the doctors in Denver should be doing this, and how I want the paperwork filled out. I’m like, I don’t know what my restrictions are or what my diagnosis is either, you’re the doctor. Put one of the 100000 diagnosis codes that are listed in my chart for my symptoms. They also complain they have to send two years of records, which as you can imagine will be a hefty stack I know. But I need help and I’m admitting defeat at this point. They literally only have one page to fill out. I’m confused why this is so hard.

Later, after I file my STD claim, the STD company asks if I signed to have my records released. I hadn’t, they were just going to send them. The STD company sends me a form to fill out and fax to my doctors. At the same time, my husbands FMLA paperwork comes in, so he can drive me to testing and treatment when I’m too sick or will be under anesthesia. I send both documents over, same day as my appointment with them earlier, which took three hours by the way. I get a call the next afternoon, they don’t understand why I faxed paperwork for my husband since he’s not a patient…. omg…. ok… I explain. They say I must have an appointment for that. :::I was JUST there the SAME DAY I sent the paperwork:::: fine. Oh, earliest appointment. Two weeks. FML.

So let’s get this straight. You don’t return calls, you botched my scalp biopsy (no pain meds, no anesthetics, no sutures, huge scar) and now that it took over a month to get results, you can’t tell me what they mean, I never know when my prescription is ready, I wait HOURS for paperwork, and now I need to come back in again, after you have CLEARLY shown your frustrated with me. Frustrated with me??? Really… 

Ultimately, I think my doctor has given up on me again because she couldn’t find the answer and I’m going to a specialty program to get answers. I dread this upcoming appointment, because again I have kept my mouth shut, continue to be nice and pleasant, but I feel like I don’t deserve to be treated this way. However, I need a PCP right now. And I don’t know if I can handle another disappointment when it comes to doctors or having to explain my story all over again. Luckily, my experience at National Jewish Health has been more than amazing.  I worry they will eventually give up on me too, but I’m trying to stay optimistic. I just wish I knew how to let my doctor’s office know how they have made me feel without losing my current care in my own town. 

In the meantime, I’ll just keep pushing forward and hope that I”ll finally find my answers in Denver.