Today was pretty much that – just a no good, very bad day.
I had my first appointment with Johns Hopkins Pain Management department. I don’t remember if I told this story to you yet, faithful readers, so I apologize if this is old news. When I was released from the hospital in April, the Acute Pain team increased my opiates to help with the pretty intense surgical pain I was dealing with – remember, I was going home with a large open wound – and I made it abundantly clear that it was vital that they communicate and get clearance from my pain doctor. They told me they had, and I called his office to verify and was told I was clear to go home. The hospital gave me a week’s worth of meds and I was to follow up with the pain doc right away. Well, when I went to his office, I was informed that no, he had not agreed to this regimen, and he was refusing to write more scripts at that level. I never got to speak to him directly, and was sent home empty handed. I lived on my secret stash of extra meds until I was able to persuade my surgeon to write a month’s worth, to cover me until today.
And keep in mind, when I was released from the hospital, the plan to switch to JH’s pain clinic was already in place. So I stupidly assumed that there wouldn’t be a problem getting, if not the same regimen, a slightly stepped down version now that the wound is closer to healed.
The appointment was made for me without my consultation, and was scheduled during an event I attend every year without fail. I called every week, sometimes twice, in hopes of a cancellation so I could be seen sooner. This did not occur, so I had to limit my attendance of the event to just the weekend, much to my sadness.
I first met with an intake doctor, who got to hear the short version of my six year struggle with chronic pain. It was she who informed me that it was up to the doctor if he would write scripts for anything, and I started having an internal panic attack. I was literally down to my last few pills, having gone through most of my extras waiting for the surgeon. I had not even imagined such an outcome, and would have made different choices if I had known.
The doctor came in, and the highlight was that he was a genuinely nice, engaged doctor. He seemed actively interested in me and what I had to say, which is not a given these days. However, even though his tone of voice was pleasant, he had some pretty terrible things to say.
The biggest surprise is that their pain clinic doesn’t actually prescribe opiates. He informed me that the way they work is in conjunction with a patient’s primary care doctor (PCP); they send the PCP a list of what to prescribe, and the PCP writes the scripts. Their theory is that it is best if the majority of your medications are all prescribed by the same physician, which holds merit. However, since my current PCP had worked to get me into the first pain program I was in specifically because he was uncomfortable writing me a maintenance opiate regimen, I knew this would not end well. They did, in fact, call him and ask if he would play ball, and unsurprisingly he said no. Before they called, they had stressed that I really needed to find a PCP closer to where I live now (I haven’t changed PCPs since the separation), and now I have to.
Tell me: How likely do you think it is, that I can find a new PCP who is a) covered by my insurance, and b) can see me in the next month, and c) is willing to write opiate scripts that are managed by another doctor?
Because that’s exactly what I have to do. He did agree to give me a month’s worth of scripts (including a new med called Mobic, which supposedly potentiates opiates better, and a large increase in my tricyclic), but it was dependant on me committing to making this happen. I even shared with him that I had looked for a local PCP a few months ago, specifically looking for one that participated under the JH umbrella, and none of them had new patient appointments in the next three months, if at all. His assistant did give me a little hope: she said if I find one and the only block is not being able to see me in a timely manner, their office will call and push the issue on my behalf.
If that was the only commitment I had to make in order to get my meds, I would have been stressed but accepting. The next item was a hard swallow, and readers of this blog will totally understand why.
I have to meet with a weight loss specialist; one that he has worked with in the past, at JH.
Now, the upside is that she isn’t a surgeon nor does she advocate WLS. (I reiterated that part of my history, including and stressing the part where at least three neuros have said that the rapid weight loss program Dr. WLS put me on may have caused and/or triggered my chronic illness to start with!) But no amount of hemming and hawing would change his mind: no weight loss doc, no meds. He stressed that she works via physical therapy and “appropriate exercise”, whatever that means, and nutrition counseling. I told him I was already on a antiinflammatory diet that is very healthy, but no dice.
I am not pleased. But a chronically ill pain patient has to do what a chronically ill pain patient has to do, I guess.
As a final fuck you, they wrote my oxycontin prescription with smaller doses of immediate release pills instead of the larger extended release doses, merely because their automatic system didn’t have my dose as an option. So instead of four pills a day, I have to take 12, in two groups of 6, at different times. I am not looking forward to figuring out if I’m actually going to have to set an alarm for the middle of the night to take a pill, or if my metabolism of the med will let me sleep through the night.
I had to race from that appointment to my surgeon’s office on another floor, even though I made it clear to the pain people I had another appointment to make. The surgeon’s appointment was in the last time slot of the day, so there was a chance that if I were too late he’d have left for the day.
I arrived a few minutes late, but I had called them from the pain clinic to let them know I was coming. They told me if I were more than 15 min late, I might be SOL. In hindsight, I should have taken the chance to laugh.
I waited for over an hour to see the surgeon. My companion/driver took the opportunity to run my scripts to the in-house pharmacy. The receptionist hinted that something had gone awry, but gave no details. Finally, I was called back.
The reason I was seeing him is because my home health nurse had a freak out. On Monday, she was measuring the depth of my wound (which she does every time she changes the bandage), and something odd happened. We know it’s been 11cm or thereabout lately, but this time she met resistance after 5 or so. She pushed gently, and something gave way, leaking a large amount of fluid – some of it looked infected. She had originally wanted me to go to the ER, but eventually we agreed that I would make an emergency appointment to see the surgeon instead.
I told him this story. He didn’t even pull the gauze out of my wound, but stuck the cotton-tipped applicator (looks like a super long q-tip) in about 4-5cm, and saw no problem. I tried to explain to him that it was likely he was meeting the same “resistance” that the nurse had, but it was obvious he was rushed. He saw no obvious signs of infection or any other concerns, so he advised me to tell the nurse to make sure she’s getting the sponge all the way into the wound (pushing lightly against any pressure). He asked after my writing, and I told him I had seen a few search hits that used his last name. (I honestly can’t remember if I had used it before or not.) He was surprised that I blogged about him, and told me he’d be googling my name and his to see if he found it. (Hi, there, Dr. Sacks, if you or one of your residents are reading this!)
To add insult to injury, even though they had the scripts for almost two hours (half an hour longer than they had told my companion they’d be ready), I still had to wait for another 30-40 minutes before we could finally leave. All of this waiting meant that we had to negotiate Baltimore’s Inner Harbor on a Orioles’ game day, which is no picnic.
When I got home, Rave had already returned from work. After my companion left, she informed me that the landlord had been to the apartment on Wednesday while I was at a different doctor’s appointment. He had come to fix our hot water pressure, as it was down to a trickle. However, it seems he decided to tour the entire apartment, including both our bedrooms and bathrooms (completely out of the way from the kitchen) and is not pleased with our housekeeping.
Our apartment is disorganized, which we both totally own. We’re still figuring out where everything goes, and there are wound VAC and other medical supplies in boxes in the living room, where the nurse does my bandage changes. However, the important distinction (to me, anyway), is that our place is clean. The carpets had been vacuumed, the kitchen floor had been mopped a few days prior, the dishes were in the dishwasher, etc.
Either this distinction didn’t matter to him, or he is a harsher critic than we, but he had sent Rave an angry email informing her that he considers the state of our place in violation of our lease, which we are going to reread forthwith. He has given us 30 days to straighten up or he will consider the lease broken.
Rave and I came up with a game plan of three parts. I am going to write a very calm and polite letter to the landlord, reminding him that he had been informed prior to the lease signing that one of us is disabled and was just about to have major surgery; there is only so much I can personally do to keep the clutter down to a minimum, and the medical supplies in the living room must stay there in some form or fashion. (I’m not thrilled with the idea of having the nurse work in my bedroom.)
Secondly, Rave, and to what extent I am able, I, will focus our efforts on making things look more organized. He also specifically complained about our garage (calling it a fire hazard), because we have chosen to use it for storage rather than for a car. There is a large, clear walkway from the garage door to the door into the house, but obviously this is not enough. We may have to find a more permanent storage facility to store some of our things in, and/or decide to chuck some of our stuff towards a Goodwill or something (even though we’ve already significantly paired down our belongings, the AEU is much smaller than where we were living before, and we both have a lot of “stuff”, like my lunch box collection, that there just isn’t room for in the house).
The third part of the plan is to eek together enough money for a maid service to come in and do an overall cleaning a day or two before his inspection. Not only does this allow us to focus our limited time and spoons on organization, but if he claims that we fail muster again, we will have some form of proof that we made an effort to make the place cleaner.
This situation is hard for me in a lot of ways. I have some deep triggers around my living space being dirty, which I see as something different from cluttered. I’m not a fan of either, but clutter I give into because I just don’t have enough spoons to care. But Rave cleans both bathrooms once a week unless we’re away for the weekend, we both keep the kitchen counters wiped down and the dishes from getting out of control, and generally we keep surfaces clean because I have a large open wound and a propensity for infection. I am also really not okay with the landlord, who is basically a stranger, poking around in my bedroom. He had to have walked all the way through to look at my bathroom, which means he could also be masking a reaction to the rather large Death altar in there. (Our other altars can pass for curio collections, but the Death altar is pretty blatant.) There was also some…ahem…adult items out in plain view.
But this may be a blessing in disguise. As I wrote in my last essay, we love the layout of the AEU, and the neighborhood is nice and quiet, but neither of us is in love with Hagerstown. It would make my life a million times easier if we lived closer to Baltimore, but we nixed that due to Rave’s commute. Rave hates her job pretty hard, and it looks like the feeling may be somewhat mutual, as they’ve taken her off the floor and out her back in training. It’s also draconian about taking time off, even when it’s been for things like “my partner needs to go to the ER” or “I told you two months ago my partner was having surgery that day”. She really needs a job with a little (not much) more flexibility, and one where her coworkers are at least more polite about not liking her and purposefully excluding her.
So if the landlord decides to be a dick and evict us, it would just give us more reason to take a closer look at Baltimore, and possibly in getting Rave a better job in the bargain. We’re not happy about the possibility of moving again so soon, but if our landlord is going to threaten to evict us over a little clutter, it’s best we learn this now and not, say, when we can’t do anything about it.
So that was my no good, very bad day. Tomorrow, I get to jaunt off to Pagan camp and see most of my Bear family. Of course, my STBX and his new poly family are there too, but these days, that’s the least of my concerns.