A Pain Contract Has Two Sides: A Letter to My Primary Care Physician

April 30, 2014 at 2:53 pm (Chronic Pain, Living With Chronic Illness, Medical) (, , , , , , , , )

Dear (My Primary Care Physician):

I don’t know if you are aware of the struggles I had this week with your office, so I will give you a short summary before I make my point.

My Oxycontin script ran out on Sunday. On the preceding Friday, my partner went to the office to pick up the script as she has done for months. She immediately recognized that the script was incorrect – it was made out for the short-acting oxycodone, rather than oxycodone ER or Oxycontin. She pointed this out to the front desk nurse, who disagreed with her and would not agree to have the script changed. My partner was willing to be wrong, so after 20 minutes of arguing she decided to leave and get the script filled on Monday (which is when the script was dated).

Obviously, we had to wait until Monday to fill the script, so I started going into withdrawal on Sunday night. It robbed me of the very small amount of ability to take care of myself and do the small amount of income-generating work I manage.

Monday, my partner went to 10 – no exaggeration, we can provide a list – of pharmacies, all of which said they didn’t carry that med. As we learned later, this is because the short acting oxycodone does not, in fact, come in a (amount redated)mg pill. However, most pharmacies won’t release any information about opiate scripts; they just tell you they can’t fill them. Finally, a pharamcist saw how harried my partner was and told her that the script was wrong and that’s why no one would fill it.

We had to wait until Tuesday *night* to obtain the corrected script, which was now three days of active withdrawal. The front desk nurse wasn’t at all apologetic, but was actively snide to my partner. When my partner asked for help locating a pharmacy that would fill it (so she wouldn’t have to repeat her wonderful tour of Hagerstown pharmacies) and was denied rudely.

Finally, at 7:30pm, I was able to take my first pill in three days. However, this was less than an hour before I was scheduled for my sleep study. I went anyway, but I am pretty positive the after-effects of withdrawal affected the results.

I see a pain contract as a two-way agreement, perhaps even a compromise. I agree to limit my choices and behaviors in part to protect your DEA licensing and ability to provide other patients with pain medication. In exchange, I am able to access legal medication I have a proven medical need for without shame or guilt. You agree to provide accurate scripts in a timely manner in part to keep me from undergoing physical risk from withdrawal symptoms. Even in the throes of suffering, I stuck to our agreement, not seeking out supplemental sources.

I would really like to find a way to streamline this process so problems like this stop occurring. It seems to me it should be fairly easy to make sure I receive scripts written for the right medication, and for the office personel to be more understanding and compassionate when I or my partner point out a mistake. At the very least, when it is revealed a mistake has been made, an apology rather than further attitude would be more appropriate patient care. Finally, I’d appreciate it if we could find some sort of timing mechanism so when I need a refill the process flows as smoothly as possible.

I am aware I hold few cards here – my options are to continue to deal with your office/practice or tempt fate by going to another doctor/practice. One of the reasons I fell in love with your practice was your ethic of being the main source of care for me, that you were happy to oversee as much of my care as possible before sending me to specialists. I see myself as a faithful patient, and it really pains me to feel like I’m a thorn in someone’s shoe. It seems like such a small issue, but this incident caused me a great deal of suffering as well as losing what little money I’m able to bring in independently. I’m also very worried the sleep study won’t be an accurate reading of my sleep patterns since I was in full-out withdrawal less than an hour before I went.

What can I do to help smooth this process? Are there other solutions or measures you can think of to keep this from happening? Were you aware of these problems?

Thank you for your time and attention to this matter.

Del Tashlin

Edited on May 6th to add:
My doctor replied within a few hours of receipt, offering a handful of solutions. We are going to change how I access my scripts so that I don’t have to wait until my pills are almost out to start the process. She also offered to address the behavior of the front desk staff at their next staff meeting, as well as make sure they are educated on the difference between long-acting and short-acting pain medications as they are indicated on the prescription print out.

So even though we went through a circus to get this month’s pills, hopefully things will be easier in months to come.

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Finding New Depths

April 25, 2014 at 5:06 pm (Chronic Pain, Disability, Medical) (, , , , , , , , , , , , , , )

It’s been a while, hasn’t it?

It’s my fault, of course. Not just because I am the blogger in the equation, but because the current health struggle is complex. Probably the most complex since the surgery last December. It hit me at a very inopportune time, and has been one of the most difficult depression triggers I’ve dealt with. I am hanging in there, doing my best to keep pushing and keep living and not give in to inertia, shame, fear, and pain.

Part of why I am writing this post now, why I have come out of the dark, is that I need you. I need allies in my current situation. I need people who know what’s going on to answer the questions and comments people will make behind my back. I need people who will understand why I might be making different decisions, why I might not want to talk about certain things, and why I might walk away from conversations that stir my turbulent emotions any faster than they’re already dizzying me. My work “season” is about to begin, so hiding at home is no longer an option.

Here’s the story, as best as I can relay it. Back in early March, I noticed my legs and ankles were getting very swollen. I had never understood how much vanity I took in having slender, muscular calves and feet until I didn’t have them anymore. I also developed shortness of breath, even when doing the smallest things – I would take the six steps into my bathroom and have to recover. I started having a deep chest cough, so I thought maybe the breathing problems were just a portend to a chest cold/bronchitis/etc. These symptoms progressed, getting more and more difficult to function. It felt like someone had wrapped my chest in an ace bandage.

The next symptom is the hardest to write about, so bear with me. I have these two pairs of jeans that I call my “jeans of requirement” (a vague reference to Harry Potter). These pants fit me for the last ten years, from my heaviest through my medically unsafe weight loss and back again. For some reason, the way they’re cut or something, they might fit differently, but I could rely on them. So you’ll understand when I tried to put one of them on, and could not fasten the button, I was downright scared. I took a deep personal inventory to examine the possibility I’d gained so much weight that they just wouldn’t fit, but in the end I know I’ve been eating well, getting up and moving when I can, and hadn’t been particularly laid up more than usual.

Then we noticed that this was happening all over my body. My feet became so swollen my shoes didn’t fit. The skin on my calves and lower thighs was stretched so tight, the smallest touch was painful. My fingers and arms were also chubbier than usual, and finally when I saw pictures of my face I noticed that even my neck and cheeks hadn’t been spared. I got really, really scared.

I started a new round of doctor’s appointments, and the first thing that gave me a little solace was that my doctor confirmed that I was suffering from edema (swelling), and specifically anascara (swelling that happens all over your body). It is most pronounced in my lower abdomen and legs/feet. It was also determined that my shortness of breath was because of the swelling putting pressure on my lungs and diaphragm, making it harder to get deep breaths. Swelling like this is a big symptom, but it could have hundreds of reasons, so this is why if you follow me on Facebook, I’ve been going to a lot of doctor’s appointments lately.

To put it in perspective: one doc’s estimation after looking at CT scans of my body, is that I am currently carrying 50-70lbs of a combination of fluids in my body. This is not “I am PMSing and feeling kinda bloated”; this is “The pants I accidently ordered three or four inches too big are all I can wear now, and even they are tight.” None of my shoes fit comfortably. I had to buy special socks because normal ones were causing deep indents in my ankles.

I had some hope in the beginning that this would be more straightforward than my other medical mystery solving tours, but that’s been shot to hell. I’ve basically been the hot potato that various specialists throw at each other. And like any other mystery solving tour, doctors find other things that aren’t related to the issue but need to be addressed – one highly suggested I see an ophthalmologist to rule out edemic pressure on my eyes causing my double vision, but it turned out I’ve just had a lazy eye since childhood that no one ever diagnosed so now it’s bad enough to cause most of the weird eyesight I’ve had lately. The eye doc wants me to follow up with a different specialist, but obviously that’s been put on the back burner for now.

Another reason I haven’t felt like narrating this part of the journey is that many, many different possible diagnoses have been suggested and/or tested for, and most of them are pretty major/life changing kinds of diagnoses. Since I’ve already told a handful of people, I guess it’s safe to say that 2 kinds of cancer are near the top of the list right now. But I don’t want to be the boy who cries cancer before any solid diagnosis has been made. I can say that heart failure and/or other heart problems have been ruled out – my ticker seems to be doing pretty well, all things considered.

When it comes to real life stuff, the swelling has killed any sense of self-esteem I usually have in abundance. I look fatter than I have ever been my whole life. Even having seen the images that prove the “weight” is NOT fat tissue didn’t really help. There are places where the swelling is pulling my skin in very painful ways. I hate how I look. I hate how I feel. I hate that my pannus – that part of me that had been cut away – has fallen again due to the swelling. There is pressure on my surgical scars. I can’t walk more than a few steps before the pain becomes intolerable. Although I’ve always gotten dirty looks from people when I’m in my wheelchair (the looks are meant to communicate “If you got up and walked around, fatty, you probably wouldn’t need that chair”), it has definitely become more pronounced since the anascara.

It has not been unnoticed that the one part of me I had come to some radical acceptance with is now the one brought to the forefront of my attention. Is there a size or weight where being fat is less acceptable? You hear things like that from people all the time – “I’m okay with being 240, but if I cross into 300 I’d shoot myself.” Or “I’m okay with being overweight, but I’d never want to be ‘morbidly obese’.” I know that you can’t let what others say interfere with your self-esteem, but it’s also true that these ‘throw away’ comments have to stick somewhere.

Because the universe is a big cosmic joke, I’m supposed to be getting ready to teach at a sacred sexuality event next weekend. I am teaching some things that I am pretty uniquely qualified to teach, but the idea of being at an event about sex and sexuality feels pretty horrible while I’m trapped under all this fluid. As Rave often says, “I’ll just put on my educator hat and get the job done”. But underneath that hat, I am pretty depressed.

Part of what I’m asking for help with is if you’re going to THE Beltane next weekend, or know someone who is. I am sure there will be people who will be asking about my apparent weight gain, both to my face and behind my back. I know some people will be curious out of a legitimate desire to know what’s going on with me, too. But I’m just not in a place where I feel like retelling the story over and over again. Nor do I want people trying to make me feel better by throwing an arm around me and telling me I’m still attractive or whatever. I just want to teach awesome classes, have fun with my friends and play partners, and spend 4 days not making phone calls and emails to my various doctors or looking for rides to appointments. If you can do anything to help create this safe zone for me, I would be deeply appreciated.

(In particular, the owner of the location tends to comment about my weight whenever he sees me, and I am literally dreading what he will say when I get there. If you are genuinely close with said person and can explain things to him, that would help too.)

So where I stand with the mystery hunt is that cardiologist has cleared me, and infectious disease did find an infection, but that’s not the cause of the issue. Next is either endocrinology or nephrology, once I get through a sleep study (because there’s a infintessimal chance that this could all be because my CPAP needs to be reset. It would be wonderful if it turns out to be that easy, but I’m not placing any bets.)

So there’s the update. I am looking for help with two things:

1. A comfortable recliner. It seems that sleeping in a chair is working better for me right now, but the recliner we have is very, very low to the ground and getting out of it hurts my knees a lot. I don’t care if the material has holes or scratches in it, just that it is tall enough for me to get out of easily, and that the reclining mechanism works well. Rave has the exact measurement for how tall the chair should be, so if you are local and want to help us hunt on Craigslist and Yard Sales you can email her at delandrave at gmail dot com.

2. Volunteer Drivers. I’ve been going to many more appointments lately, so my regular pool of drivers are getting a little burned out. I have my own car, which I prefer because I am comfortable in it, but I will ride in other cars as long as they are high enough off the ground. I particularly need drivers the times it is most difficult to find them – between 11a and 6p, Monday through Friday. I have appointments in Hagerstown, Baltimore, Lutherville, and Frederick. The actual appointments are usually an hour long, plus travel time. It is vitally important that we arrive on time, and I would rather be 5 hours early than 5 minutes late. (Not literally.)

Drivers must also be able to lift, pack, and push my wheelchair. You are welcome to do a dry run on a day when I don’t have to be somewhere – you can come over and push me around the mall or a store or something to get the hang of it.

I can’t pay right now – money has been a real issue lately – but I can offer a variety of barter. I can send a “Rave for a Day”, who is happy to do laundry, clean and organize areas, babysit, mend torn clothing, etc. She’s pretty spectacular and multi-talented.

Again, if you might be able to help with driving, email delandrave at gmail dot com.

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