I’m back! Yes, I have been out of the blogging world for over a month. It wasn’t by choice. My site got attacked. I’m not really sure who or why someone would want to attack my site. It was probably a random attack. I’ve been working on websites since I was fourteen but I had no idea how to untangle all the infected files and my hosting company was less than helpful. Thankfully my friend Juan spent a few hours (and by few I mean like probably more than 10 and deserves a medal) last night combing through the site and finally unlocking it.
So what happened in the last month?
I had a new symptom: joint pain. My concierge doctor was still trying to just catch up with my paperwork and case history. He told me that I should take 800mg of ibprofuen for two weeks to see if it helped. It didn’t. It just got worse. I have a pain management doctor now so I went to him too. He told me that for the level of pain I was experiencing I should be taking percocet around the clock. I tried, but I couldn’t keep up with work. Hell, I couldn’t keep up with brushing my hair. Percocet around the clock is no joke. I started pushing myself to try to deal with the pain until the evening when my work was mostly done and my errands run. I couldn’t drive on the painkillers so I couldn’t really imagine taking them all day when I was bouncing between my infusion center, the post office, and my regular errands.
But the pain just kept getting worse and worse. Until eventually I had no choice but to start taking those painkillers around the clock. It was so frustrating trying to edit my book, work on the website, pack and organize stuff for the non-profit and keep up with my actual paying work. But I powered through.
Then one morning I woke up in just pure agony. I had an appointment to get my port accessed so I went to my infusion center and by the time I got there I knew things were way post normal bad and had approached dangerous bad. A nurse took me over to the emergency room after they’d accessed me.
I was in the ER waiting room alone, exhausted, drugged out, crying. I called RJ to let him know he needed to pick me up but that I was probably going to be fine in the ER by myself since they were just going to give me painkillers. When I called my mom though she’d barely hung up the phone before she was on her way over. I’m glad she did because the doctor ended up having to give me two shots of morphine, one shot of benadryl, and a shot of phenergen. The pain only went from a 10 to an 8. My concierge doctor told me to leave the ER and come to his office. My mom took us there and the doctor just seemed…agitated.
He said that he didn’t want me taking so many pain killers. That my pain killers were probably the cause of all of this joint pain. I told him I didn’t think this was the case. He didn’t seem to care. After some discussion he conceded that sure, we could check to see if anything else was causing the pain so he ordered blood tests and two MRIs. Over the next few days I got those done. The only thing that came back was that I had a slipped disc in my lower back (probably from that time I fell down my staircase earlier this year.)
He sent me back to pain management. Pain managment suggested I go on a Butran’s patch which is a long-lasting slow-release narcotic painkiller patch. I was really not into this idea because I had been on the Fentynl patch and had a bad experience with trouble breathing. I said I’d keep taking the percocet until we knew more about what was going on.
I went to see a rheumatologist after that. He went over my history and said he was positive that I had sjorgrens syndrome. He said that a lot of people don’t test positive for it with the blood test, but that he treats this disease clinically and clinically I had more than enough criteria to start treatment. He wanted me to wait two weeks though. In the meantime he suggested I go to my pain managment doctor and get a nerve block.
Pain management said no the nerve block but they wanted me to try trigger point therapy where they inject shots of lidocaine and cortisone into trigger points in my lower back. On the day that we did this i was in real bad shape. R.J was with me because I wasn’t even sure I’d be able to walk after getting the shots in my back, let alone drive.
The wait for the appointment was well over an hour and R.J had barely gotten any sleep. I was kind of on my own discussing treatment with the doctor and it was hard to get my thoughts out because of all the pain killers. I was in so much pain though and when he did the trigger point shocks I just laid on the table crying. It hurt so much worse than I imagined it would.
When we left the office and I went to sit down in the car I leaned my back against the seat and felt like the wind had just been knocked out of me. It hurt so bad I was almost dizzy from it.
R.J took me home, I tried to rest and he went to work. By the time he came home at midnight I had tried everything to help my back: pain killers, lidocaine patch, heat pack, ice pack, icey-hot patch. It was bad and it wasn’t getting any better.
But R.J had gotten up early to take me to the hospital and now it was late and he was just getting home from work. I think I would have gone to the hospital right then and there but I wanted to give him some time to recoup before going on the move again. At six AM I couldn’t stand it anymore and we left for the ER.
On the way to the ER I called my concierge doctor only to learn he was out of the office. This was weird because he told me that he only takes on vacation a year and that he’d already taken it. I spoke with the on-call physician and gave him a brief description of what was happening. In the ER we saw one of the doctors who knew me pretty well. He got me set up with pain medications and nausea meds. But to be honest, the pain was still incredibly intense. It was being clear to me that I was going to probably need pain management for a few days.
I told the hospitalist this and then the doctor who had come to cover the concierge doctor came to my ER room and I told him what was going on. I asked him if he could admit me for a few days to help me get the pain under control. I told him what my usual procedure is for pain management. He said he would take care of it and left.
I felt good about the plan, it seemed like even though my concierge doctor wasn’t there—the on-call doctor was going to be okay.
Except that when I got up to my hospital room they told me they were only giving me oral percocet—and at only half the dose my pain management doctor had told me to take.
I was flabbergasted. I called the on-call doctor and he said, “well, I don’t feel comfortable prescribing pain management for you because I don’t know your or your case.”
I was kind of furious that he didn’t just say that in the first place so I could have cleared it up. I told him to get on the phone with my pain management doctor (who does not work with the hospitals, and who’s main contact for me is my concierge doctor.) He spoke with him and then to my actual concierge doctor and I was ordered a single dose of dillauded to take for the night. At that point mom and R.J both came back to the hospital to help with communication because after I had the dillauded I was pretty wasted.
The next morning the concierge on-call doctor came in, sat down, and asked me: “Why didn’t you tell me you had turberculosis?”
“You have POTTS Syndrome.”
“No. I have dysautonomia. I have POTS.”
“No. Postural Orthostatic Tachycardia.”
I want to say that this little miscommunication would not have annoyed me so much in general—but after having gone through this whole fiasco with this doctor not wanting to treat my pain and saying he didn’t know me—you would think that he would have at least read my chart.
But he hadn’t. At least not until sometime between last night and this morning. Otherwise why on earth would he not have mentioned this misunderstanding? Furthermore, why the everloving fuck was this dipshit just strolling into my hospital room with no mask, no gloves thinking I had TB?
THE STUPIDITY, I CAN’T EVEN.
I felt like I was going to explode. So I just said nothing and waited for him to leave, which eventually he did, letting me know he would sign my discharge papers on the way out.
When R.J picked me up that afternoon he made sure that an appointment was made for me to see the pain management doctor later in the day. When we told the pain management doctor what had happened he was floored. (The club, welcome to it.) He once again urged me to go on the Butran’s patch and—feeling incredibly hopeless and helpless at this point—I agreed.
Over the next few days here is what happened:
- I continued to deal with my incredibly crazy amount of pain without the help of my medical team.
- My insurance company rejected coverage of the god damn patch anyways.
- My concierge doctor NEVER CALLED ME BACK.
I called his office on Monday and his assistant told me that he was in, but that he had a lot of calls to catch up so I would hear from him later in the afternoon. I was pissed, I wasn’t even sure how we were going to handle this.
No need to worry about it though because the fucker never called.
On Tuesday I called again and was told he would call back.
By 7:00 PM I realized that guy was not going to call me back. So I wrote him an email:
“Hi Dr. Dipshit* (I know you guys all want me to name names here, but this is more to protect my privacy than theirs.)
I wanted to reach out because I’m a little concerned about the last couple of days. I know one of the things we spoke about when I first came to you was the fact that my case is obviously really long and complicated—but also that I do have these kind of crisis situations where I need my care coordinated at the hospital.
With you not being here last week and working with Dr. E* on pain management—I was really struggling. I was still trying to figure out whether or not I wanted to try the patch. I saw the rheumatologist. He thinks I have sjogrens and RA. Seeing him tomorrow to see the bloodwork. In the meantime, he recommended that Dr. E* give me trigger point shots in my lower back. I had a very bad reaction to these and ended up being in so much pain that I felt like I needed to go to the ER to have it managed.
The on-call doctor was very nice and knowledgable—but he had no idea who I was or anything about my case. He was also not familiar with dysautonomia. He listened to my history and said he would speak with pain management about a solution. After six hours in the ER I was taken up to a room and told they were only going to give me half of the amount of percocet that Dr. E*i was currently suggesting I take. After a few calls, the on-call doctor said he didn’t feel comfortable prescribing any heavier pain medication because he did not know me.
Eventually I think he spoke with you and to Dr. E* again and I was told I could have one dose of dillauded for the night. This was really inadequate pain management but I had no one there to really speak for me. Later I was told that the orders read that I could actually have one dose of dillauded every six hours—but that’s not what I was told or offered in the hospital.
The next morning the on-call doctor came to see me and asked why I did not tell him that I have tuberculosis?
He had read my chart, and thought I had POTTS. I was very upset that he was so misinformed and confused (why if he thought I had tuberculosis he would even walk into the room without gloves and a mask?) He clearly knew nothing about me, my case, dysautonomia or how to treat me—all understandable because he does not know me and I am not his patient.
It absolutely terrifies me to be in a situation where I am helpless, in pain, have no advocate, and am relying on a doctor who has no information on me or my history or my situation.
I am completely vulnerable and I work so hard to make sure that I can afford a concierge doctor to take care of me so that this never happens.
I know how much time and energy you have invested into looking into my case and I just…need your help. My pain management doctor does not work with any of the hospitals. He was working with you, consulting with you to manage my care. He has also said to me numerous times and to my husband that my pain issues are not caused by the narcotic medication. I am simply not taking enough to cause rebound pain. I know that’s something you were concerned about—but he entered this into his notes and they were sent to you disproving that.
Please understand that I am doing my best to take control over my health and with the extreme highs and lows of this disease, the lack of general knowledge at the hospital, the progressive nature of all of my symptoms—including pain, it is becoming harder every day to do this with dignity and find the kind of medical support that I truly need.
How can we work together to make sure I’m not left in the lurch again? How can we get all of my doctors on the same page and try to prevent these hospitalizations that are always chaotic and disorganized?
I realize this may be kind of a learning curve for everyone involved and I want to do my best to communicate effectively and to not be the patient who is calling with a crisis at 3AM because things have gotten so out of hand.
Can you please put aside some time tomorrow to give me a call so that we can figure this out?
That’s a sane sounding email, right?
I feel like I was giving him an out for being totally and completely irresponsible about managing my case. And I only did this because I am terrified that I won’t find another doctor willing to take on my case.
Well guess what?
He never called back. Finally on Wednesday afternoon I called his assistant.
“He’s in breach of our contract,” I told her. “He’s like…beyond having breached our contract. Please tell him I’m on the phone.”
The assistant put me on hold and when she came back she said:
“So I just spoke with him. He doesn’t think he’s going to be able to help you moving forward. We’ll refund you your money in full.”
Wow. You know by now that I’ve had doctors dip out on me before, but this one really took the cake for cowardice. I mean you’re going to screen my calls for a week and then let your assistant fill me in?
My mom didn’t think so either. She let him have it via email.
We met at the office one day when I brought Ilana in from the hospital. I told Ilana after that meeting that you were one of “those” doctors. The kind that made a conclusion from a previous patient and looked for horses, instead of zebras. Your conversation with us about pain management was off the mark. I told you that, and her pain management doctor confirmed it.
You wasted time, mismanaged my daughter and created a situation where she had to fend for herself when she was in uncontrollable pain. You should not tell a patient that you are a concierge. Ilana was very upfront with you from the beginning about her expectations and her needs, and you frankly were a chicken shit for not getting on the phone with her 3 days ago when she called to speak with you. You should have quit then, instead of making her call your secretary every day and write you a letter.
I am telling you point blank Dr. Dipshit*, don’t consider yourself a concierge. You are not.
You are a below adequate doctor.
Thank you for quitting. It seems to me, you quit the first week.”
No, he didn’t respond. (But like really, what’s he going to say at this point?)
We saw my rheumatologist, he diagnosed me with sjogrens and started me on a new medication. A few hours after I took my first dose I had an unusual reaction.
So not sure if that’s going to work out.
I have a whole lot to update you on about my non-profit, but that’s another post.
I figured this is probably enough to take in at once.
Go have a glass of wine, I bet you need it.
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