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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Square Pegs

August 23, 2013 at 1:26 pm (Hospitalizations, Medical, Mental Health) (, , , , , )

This is going to be difficult to write. I almost never use trigger headings (warning people about potential upsetting topics), but this post deserves one: Trigger Warning: discussion of sexual assault, abuse of power.

There is also an anatomical image of a vaginal opening further down.

I’ve posted to Facebook my frustration over the way doctors have been tossing potential diagnoses at me left and right. At various points in time, I’ve “had” a kidney infection, an abscess on the kidney, a blood borne infection, another abdominal abscess, kidney stone(s), a pelvic infection, etc, etc.

In the course of this, I am being seen by an intern, Dr. Laing. (I am guessing on the spelling. Please note that I rarely use doctors’ real names on this blog, but for him I am making an exception.) At the time, I do not know that this is only his second day on this rotation (although he’s done it once before). He is a charismatic young doctor who looks like he’d make an excellent background character in a college library or Revenge of the Nerds movie.

Dr. Laing stops in and begins to ask me some sexual history questions. As y’all know, this doesn’t phase me at all. He is vague at first, when I ask him how this could be related to my problem. Then he tells me I am getting a pelvic exam to rule out STIs, and other problems with my magina area.

As someone who has experienced real, documented trauma at the hands of a crappy gynecologist, as well as someone who has psychological issues with strangers mucking with his bits, I start to feel a little panicky. I take a deep breath and start trying to make the situation as comfortable and “safe” as I can.

I start by asking for a female doctor to do the exam. It’s not that I have issues with male GYNs, really. I find informing a female GYN of past trauma translates into a much more compassionate and gentle experience. Dr. Laing says he will look into it; a few minutes later he returns to say he couldn’t find one but that there will be two female nurses in the room. I am unhappy (especially since it felt like he only spent a minute looking for a female gynecologist before giving up) but shake my head and accept that the intern will do my exam.

It helps the story to remember at this time that my chief complaint is severe pain in and around the kidney area on my back and side. Dr. Laing informs me we’re going to do the exam in my room, and I am surprised. I ask why we aren’t going to an exam room with, y’know, stirrups and shit. He assures me it’s going to be quick so there’s no need. He is, in fact, surprised that I am surprised.

I should have known something was going awry when he asked a nurse to get all the necessary tools, and when she arrived with them she had to give him a rundown as to what was there. I had requested he use a pediatric speculum, since we weren’t doing a pap smear or anything requiring more than a glance at my cervix. This, too, he pretends to accommodate, by leaving the room for a minute and returning empty handed. I happen to know that JH has an extensive pediatric unit, and I would bet something large that it has at least one peds speculum.

Finally, I carefully lay down, yelping at the pain in my side. Keep in mind, I hadn’t slept in 3 days because laying down was uncomfortable no matter what position – and he knows this. He decides to use an upturned bedpan to raise my hips a little, which digs into the most painful area on my back.

People are probably wondering why I haven’t refused to continue at this point. Again, I mention that the doctor is very charming, and I am honestly afraid that if I really stand up for myself I will get substandard treatment. Also, it bears mentioning that I have been the victim of sexual assaults, one of them perpetrated by a doctor. So being in this situation has already flipped me out emotionally and so I focused on being physically compliant as I could.

I lay down with the bedpan digging into my lower back. We mess around with the positioning of my legs. I am making a constant stream of pain noises and am trying not to squirm. He informs me we’re going to start with the speculum. This is not the tack I would take with such an exam; those of you who have played with vaginas know that it’s better to start with something small and work your way up, rather than the opposite. I accept my fate with a sigh.

This is when things start going downhill fast. He parts my labia and immediately pushes the speculum against my urethra.

As you can see, that’s like aiming for Manhattan and ending up in Staten Island. They’re connected, but not the same thing. Because I am in a fair amount of pain already, I just flinch away and try to close my legs. He takes this as skittishness and tries to relax me. I am somewhat non-verbal, which is exacerbating the issue. He attempts again, and this time I feel him trying to open the speculum as it is resting painfully on top of my urethra.

I react again, and this time he decides that this isn’t working so he’s going to skip to the manual exam. He says his objective is to palpate my ovaries. I tell him that many GYNs have tried to palpate me in this matter and have been unsuccessful. (My ovaries happen to be hiding in an area of my body with a lot of fat tissue.) He asks me to give it/him a try, so I sigh and nod.

Unshockingly, he takes two fingers and presses them against my urethra. At this point, I say something like, “That’s my urethra you’re trying to penetrate.” He apologizes, withdraws his hand, and then returns to push painfully against my…clitoris. That’s right, this newly minted MD thinks the vaginal opening is above the urethra rather than below it.

Let’s just skip ahead. He fails to palpate my ovariesm (not for lack of trying!), and by the time he’s done I think he knows he’s fucked up. He leaves without saying anything to me, which was good since I was crying. Both nurses who were there were shaking and holding their tongues until he left. It was validating to see and hear that the nurses were as concerned and frustrated as I was. One nurse in particular, who was my assigned nurse, went to great lengths both immediately after, and for the rest of her shift, to comfort me. We sat and talked about our lives, she brought me super secret nurse treats, and she let Rave and I go for a walk for half an hour.

Later that evening, the attending (Dr. Laing’s bosses’ boss) and the resident (Dr. Laing’s boss) came in to hear my story. I stressed that this was not a “OMG gyno exams are hurty” complaint, but a “he really should have known the difference between an urethra and a vaginal vestibule” sort of complaint. It turns out that Dr. Laing assured his attending that he had done several pelvics before; the attending wanted Dr. Laing to have another doctor assist him, but Dr. Laing went rove and did it on his own. The attending assured me that I would not see Laing again, ever, and that the attending would take a special interest in my case.

He also gave me the lowdown on what’s been going on. As I’ve written before, it seems like possible diagnoses are spaghetti strands and I’m the fucking fridge. I might or might not have had or currently have:

  • a kidney infection, otherwise known as pyleonephritis
  • one or more kidney stones
  • an abscess on my kidney
  • a third reoccurance of an abdominal abscess
  • a peritoneal infection
  • an STI or other reproductive issue
  • ovarian cysts
  • any two of these in combination

The attending assured me that we were only looking in two directions now: we can actually see the kidney stone, but it’s resting on the bottom of my kidney where it should hurt the least. However, I’m not acting like a kidney stone patient. Second, there have been a ton of white blood cells in my urine, which screams “INFECTION”; the current thought was that I had an infection of the bladder.

This meant that right after I had come to peace with the pelvic-from-hell, I had to let yet another stranger muck about in my cuntal region (or is that “cuntle”?) and do something painful. I tried to advocate doing it the next morning, but the doctor really wanted the results tout suite. (heh.)

Anyway, back to the conversation with the attending about Dr. Laing. We agreed I would never have to see Dr. Laing or deal with him in the future, and I further pushed that if I saw him again, I would scream and shout. This ultimatum, in addition to a bevy of other complaints, served me well. I haggled over pain meds in my negotiation about the exam for my bladder and won. I decided to push my luck one final time, and asked him for a standing order for a little extra pain meds when I was particularly hurty. (Otherwise, the process is kinda long: I have to complain to a nurse, who then has to call the on-call service doc and explain the situation, and sometimes that doc has to call my actual doc to verify that whatever I’m asking for won’t mess anything up. This can take up to several hours.)

So a few hours later, three very kind but nervous nurses came in to do the straight catheter. See, when you pee in a cup, sometimes you leave behind skin, hair, or other contaminants in there too. Getting a urine sample straight from the source eliminates a lot of that cross contamination. I know I have friends who get cathed for fun, but I am not one of them. Maybe my urethra is too narrow, or I just don’t enjoy penetration in that way. I was shaking the whole time, but my awesomesauce nurse held my hand and told me funny stories fro her life to distract me.

So that was yesterday. Today’s song is in a different key, a different time signature, a different genre.

From what I understand, we have definitively identified the following diagnoses as being accurate and applicable:

  • one kidney stone, resting in the bottom of my kidney
  • an infection, somewhere in my abdomen
  • severe dehydration, and even IV fluids aren’t doing much to fix that
  • severe pain in my right flank, that is very sensitive to touch?

However, I have symptoms that are not explained by any of that. So now comes the oddball testing, starting with an echocardiogram this afternoon. I’ve been assured there were be no more pelvics, though.

I’m trying very hard to ignore the fact that three different phlebotomists have tried to take enough blood for a blood culture and failed. One couldn’t find any veins, so he walked away without playing Bingo! first. The second got a good vein, but it was pushing very slowly and meekly, so they only got enough for the little-bottle tests, not the catheter test (knowing the name would likely help).

I keep trying to explain to my doctors that my medical situation, whether it be short term or permanent (anything in between is more likely), is never black-and-white. Now he can order those wacky tests the hospital wants to try out. My nurse keeps telling me I’m scheduled for an echo (which I’m pretty sure is a heart test) this afternoon.

There has been some upsides: The nurse I had yesterday when all this went down, she and I bonded a lot. We sat and talked about my separation, and my relationship with Rave, and teaching adults about sexuality; she talked about some of her past struggles and what it’s like serving the homeless population in East Baltimore.

Um. There has to be more upsides. I have my own room? (in the dingey, “historic” building) Well, I do like my ID doc – who is actually the boss of the ID doc I am seeing at their clinic. I like the resident and attending of Dr. Laing, who are caring and considerate when touching me. I am pleased that they’re taking my pain seriously, and not dismissing it outright when their theories on what’s causing it don’t pan out.

People have been asking how long I’m going to be here. The only clue I’ve been given is that the attending would be happy if I wasn’t here when he gets back on Sunday. However, some of the tests they are doing today take two to three days to finish, so something tells me I will still be here Sunday. How much longer after that, I have no idea.

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This is a Sacred Space

April 20, 2013 at 8:21 am (Spiritual) (, , , , , , , , , , , )

I’ve been doing this balancing act for a few days now. I don’t feel comfortable sharing all the details of my medical situation on the Internet any more, not even here. That feeling defeats the purpose of having the blog to begin with. It’s all garbled up in my head and I am trying to tease it out into a long, single strand that makes sense all around.

When the Regretsians first found my blog and started making fun of me and the stuff I write (and the stuff I believe in), I was a little hurt. Eventually, I put on my big boy pants and fucking dealt with it. I posted to the forum and I addressed them here as well. The story ended very well; even though I don’t really read or post there anymore, I still go back and can always find some person I knew (oh so many years months ago).  It’s worth noting that Loki was proud of me, proud enough that He had me mark the occasion permanently.

There will always be people who will take whatever I write on my blog and use it for their personal enjoyment. I think it’s despicable and low to mine a blog about my medical condition and chronic illness for such things, but my opinion doesn’t count and I’m okay with that.

But there is real harm happening. There are people who subscribed to this blog because they really do want to know what’s going on with me, and I find myself hesitant to write about anything at all.

I prayed about it, and this is what I was Told: This blog is a sacred act. It was, is, and will be a sacrifice on Baphomet’s altar. She wants me to delve deep into the places that hurt, that are vulnerable and scary, and bring them to the fore. He thinks that my journey is important to others, not just because they care about me and want to know I’m okay, but many people read these words because it gives them comfort and insight into their own journey with chronic illness, disability, pain, and death. They need to know that their suffering matters, that their tiny prayers whispered from inside the MRI tube are being heard, that when they awake in the middle of the night because their pain is so bad they can’t move Someone is still there for them. It may not be Baphy, but it will be someone.

Baphomet also said that the sacrifice is only more blessed, bigger and better and more holy, when part of the sacrifice is continuing to post in the face of ridicule and humiliation.

This is a sacred place. This is a sacred place not because I say so, but because the Gods do. So this is the last time I will be addressing my fear of posting. This is a sacred place because the people who come here say it is so. If you wish to defile my sacred space, you act against the Gods and people who have worked to make it what it is today, and what it will be tomorrow.
SMIB.

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Don’t Panic

April 14, 2013 at 2:06 am (Death and Dying, Hospitalizations, Medical, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

The theme of this hospital stay seems to be “Don’t Panic”, like the large friendly words they put on the cover of the Hitchhiker’s Guide to the Galaxy. Except in my case, I keep being told not to panic over things that I feel pretty strongly are totally panic-worthy.

I come into the ER thinking I had liver toxicity, and it turns out that I have another serious infected pocket of tissue, and yet I am supposed to somehow be relieved by this news.

Then I find out that this new pocket, although smaller than the one that was removed surgically in December, has a “skin membrane” and also has “air pockets”, both signs that it will likely have to be surgically removed rather than treated via antibiotics. Yet the fact that it’s smaller is somehow supposed to make me feel less worried.

The fact that this time, they put a drain in and practically nothing is coming out, whereas the last few times it was so productive they had to use two or three bags at the moment of insertion to contain all the output, is supposed to be reassuring. Even when the nurses keep saying, “This probably means it’s not in the right spot.”

I almost never manifest a fever or other stereotypical signs of infection until it’s at “going to kill you if you don’t get to an ER” level of infection. Yet, the fact that I don’t have these stereotypical signs is supposed to make me feel good. In addition, since nausea is not a typical sign of infection (and yet every time I get an infection my nausea gets markedly worse), I shouldn’t be worried about my inability to eat (yay weight loss, says the nurse) or that the nausea is so strong I scared my nurse into giving me a EKG because of my symptoms.

Even though I’ve already blown three veins, when I start to feel the signs that the antibiotic they won’t be sure I need until Monday is burning through my IV line, I should sit tight and suffer until the line actually blows, because it’s really important. If I ask the doctor to wait to give me the antibiotic that burns my veins out until they can use a PICC line to infuse it, I am going against medical advice. (Yes, for asking.) I am being irrational about blowing out my veins, because using a caustic med before we know if it will actually treat me is rational.

When my pain quality and location changes drastically in the span of two hours, getting bad enough to wake me up after less than a hour’s consecutive sleep in four days, I’m supposed to be reassured that since none of my vitals changed, that everything is totally okay. I don’t know about you, but knowing something got much worse and there’s no apparent reason, scares me way worse.

I don’t know. I used to love Johns Hopkins, but now it’s just turning into another shitty hospital with nurses who don’t give a shit and doctors who hate you because you’re on pain meds. It’s another ER where I get shunted from room to room for 36 hours. I’m expecting Dr WLS to walk through the door any moment now.

And this hospitalization came at a really fucking terrible moment in my personal life. Yes, including the time I was hospitalized two weeks after my husband dumped me. I really needed, psychologically among other reasons, to have a few weeks where my health was not center fucking stage. I needed to spoons to have some big conversations, and instead the things I could have fixed three days ago are starting to fall apart. I’m losing my ability to be rational and objective, and just want people to stop being stupid jackasses, rather than have to spend an hour finding a nice way of saying, “Cut out your stupid selfish behavior you twat”. I need to get the work I’m doing, done. I need to be have the ability to answer emails. I was ready for this shit in December, but not now.

Things really, really suck. A lot. I am very depressed, and very disheartened. You may see me or talk to me and I’m all smiles and jokes, but inside I feel like I did all this fighting for a life that sucks, that I tried to save something that will just continually disappoint me. In a fucked up way, I feel the same way about my life as I did about my marriage in those two weeks before my STBX dumped me; like staying and fighting is the only decision I’m allowedto make, because of what I believe, but my intuition says RUN RUN RUN.

I don’t get it. I could probably handle this if it was something different, new, interesting. Hearing that I may have the same problem over and over again over the next few years is not comforting in the least.

Oh, and PS? They’re talking about more surgery. Possibly in the next few months.

Don’t panic, my ass.

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Even the Predictable Isn’t.

March 26, 2013 at 5:38 pm (Hospitalizations, Medical, The Panniculectomy) (, , , , , , , , , , , , , , , )

This will be short, as I can still feel the effects of the Versed, Fentanyl, and Morphene in my system. Today I went to JH to get the new drain put in via Interventional Radiology. I’ve had it done twice before, so I wasn’t nervous or worried much; my only fear was that something odd would happen and they’d make me stay at the hospital, as the first two times were done as part of a bigger inpatient stay, and this was supposed to be outpatient.

I whisk through registration, and only wait for about ten minutes before it’s time to go back and gown up. I’m cool as a cucumber, watching some Netflix and joking with the nurses. They come to take me into the procedure room and other than the knowledge that this is going to hurt quite a bit, I’m still doing okay.

The first two times I had this procedure, it was done on an emergency basis, so I wasn’t able to do things like fast and limit my fluid intake. They tell me this time, that could be why the “twilight sedation” didn’t do much for me. The truth is, the first time I wasn’t given much of anything due to my blood pressure being too low; the second, I was given very little. This time, the nurse cooks up a cocktail I can feel; although I didn’t fall asleep (because, well, having a wire shoved into the sorest part of your abdomen isn’t really dreamland material), but I did find myself following trains of thought and being generally spacey. The nurse kept bringing me back to reality by loudly asking me to breath deep breaths; I couldn’t see the stat board, but I assume that even with the oxygen and my CPAP, my pulse ox was dipping. This is common for me when I have to lay flat on my back, which is why I never sleep that way.

When the procedure was over, they wanted me to shimmy from the procedure table to the gurney. I remember distinctly, both times before, being allowed to sit up, come off the table, and then turn around and hop on the gurney. This time, because I had been given much more sedation, they would absolutely positively not allow me to do this (and actually denied that it had ever been done, but whatever). Part of my chronic issue is that my arms and legs are very weak, so between the soreness in my abdomen, the terrible pain in my lower back from having to lay absolutely flat for so long, and the weakness in my limbs, this shimmy plan was not going to happen. So they grabbed some big burly doctor/orderly types, and yanked the sheet with me on it onto the gurney. Let’s leave it at: I cried. It fucking hurt. It hurt my newly punctured abdomen, and it really hurt my screaming lower back. They look at me like I’m an idiot, and without even putting something under my head to support it, they wheel me to post op.

Because of the pain, and that I metabolize sedation super fast, once I was in post op the first thing I asked for was if I could sit up. They bring me a recliner and my back is forever grateful. The nurse starts taking the personal items off of the gurney, notably my cpap machine, which some nurse has graciously packed up for me after the procedure. Except.

See, my CPAP: it’s a machine I use at night that forces air into my throat and lungs in order to bypass any partial or full blockages my epiglottis or other anatomy puts in the way. Sleep apnea is becoming fairly common, and I can name at least ten of my friends who use some sort of apnea device to sleep or who have had surgery because of it. And most machines have a water reserve, since pushing dry-ass air into your mouth and nose all night can be harmful; the machine humidifies the air (great for when I’m sleeping in hotels!), and you can control how little or much humidity is released. However, the big fat honking rule, for what I feel are fairly obvious reasons, is that you have to empty the water chamber before you pack up the CPAP. In case it’s not obvious, failure to do that means that the electronics that make the CPAP work get water all over them, and they think it’s a spring break wet tee shirt contest and stop working.

So I’m in post-op, and the post-op nurse is moving my CPAP case from the gurney to a table in the recovery space. She notices the bag is soaking wet. I groggily try to explain to her that I’m betting the nurse left the water in the chamber, and the machine is now broken. Now, to be fair, this has happened twice before to my particular machine. Since it is often people other than me who pack up my stuff, it’s been packed with water in it before. However, the big difference is, when my friends have mistakenly packed it wet, it was after a full night’s sleep, so there was very little water in the chamber. The nurse in the procedure room had filled it as though I was going to sleep for eight hours, and then only used about an hour’s worth of water.

We plugged it into the wall, and I was right. It tried to start up, but it wouldn’t go.

I don’t think I’ve seen more nurses turn pale white. Fucking up someone’s personal, very expensive, medically necessary machine is, one would guess, one of those things nurses don’t just get away with. All of a sudden, there was a lot of hustling and bustling as they were trying to figure out what to do. Secretly, Rave and I knew that she had an old machine back home, so worse came to worse I could use that, even if it wasn’t set to my specficiations, at least long enough for me to see the doc and get a new one. But even with that in hand, my biggest concern was making sure that from the moment we discovered they were responsible, and there was absolutely no way I had done anything to cause this, that Johns Hopkins was buying me a new effing CPAP. (And what good timing, as mine is old and makes a lot of noise compared to the newer models!)

Then the charge nurse announces that they can’t legally release me until they know I have a CPAP to use that night, and if we couldn’t figure something out, they’d have to put me in a room. No way, I thought. I tell Rave to call my sleep doctor’s office and explain the situation to them, and see if I could get a loaner or something. Johns Hopkins is doing the same thing on their end. I covertly planned that no matter what my doctor’s office actually said, I would tell them I was getting a loaner, and I’d figure out the finanicals later.

But as it turned out, my doc’s office does loan out machines, pretty much indefinitely, if yours is broken. However, it was now 2:15, and the office in Frederick (about an hour away) closes at 4:30. So my discharge goes in fast forward: I’m given some morphine to make the drive home a little less unpleasant. Since I’ve had this sort of drain before, they skip teaching me how to take care of it. They grab me a bunch of supplies, since I need saline flushes for the drain and they’re pretty hard to come by over the Internet; there’s other stuff, but I have most of it at home. And then they even call one of their orderlies to help Rave carry all the stuff back to the Duckbus so we can hurry our way to pick up the loaner.

We get to Frederick with plenty of time to spare, and it takes us all of 20 minutes to get the loaner. I get a phone call from Johns Hopkins Customer Service, as they’re just checking in that I was able to get to my doctor’s in time. I told her I was, and that I would be in touch very soon about how Johns Hopkins plans on fixing this issue. I must have sounded like a bolded statement, even though I was half-asleep from all the meds, because she gave me her personal line and promised that JH would replace the machine as soon as we could figure out all the details.

This is what I get for thinking any procedure involving me would go smoothly and without incident. I’ll be offline for the rest of today and possibly tomorrow recuperating from yet another tap of the Del keg. So far, the draining fluid looks serous, or not infected, so that’s a very good sign.

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You won’t like me when I’m angry.

July 18, 2012 at 10:00 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health) (, , , , , , )

Being sick makes me angry.

I think it’s the emotion I feel the most often in direct relation to my illness. I get depressed, frustrated, upset, but most often, angry. Really, boneshakingly angry. I get so mad I turn red, and shake, and can’t engage in polite conversation. I have to listen to loud music and feel like a suburban teenager whose every pore is screaming for something, anything to happen.

Sometimes, that’s how I feel. That even if things were to get worse, much worse, at least then something would be happening. I would be that much closer to figuring out what the hell is going on. Every time I get hung up on some other thing – like emergency surgery – I get even more angry. When that happens, something is happening, but it’s like your parents getting a divorce. It’s something, but it totally sucks and doesn’t make life any better.

When I get angry, my muscles tense up. I become hyper aware of my body, and every little pain seems that much bigger. My blood pressure and blood sugar go up. I am not breathing deeply, and I get lightheaded. I get nauseous and can’t even sip water without feeling sick. I start to get really worked up, and maybe I even vomit. My chest starts to hurt. I can’t make simple decisions. I fall behind in my work because all I can mentally handle is staring at moving pictures. I don’t stick to my diet. I can’t express how I’m feeling to my loved ones, even though they can easily see I am not doing well.

In other words, I get sicker.

These things have long term consequences. When I stop being angry and find a little piece of peace, my muscles ache from being tense for so long, or worse they won’t untense and I find myself with limited mobility. The things I do to control pain don’t work as well, since I’m hypersensitive. Usually that ends up leading to me in one of those bouts when clothes hurt and I end up having to sleep on fuzzy blankets and can’t touch anyone. I get intense headaches that come and go for days. My jaw starts to pop from all the clenching. My blood sugar control goes out the window and I end up using insulin. I have a backlog of correspondence and other work that I now have to face in a short amount of time. My loved ones are cautious around me and feel like they can’t come to me with their shit because I’m so lost in my own. But at least I’m totally up to date on the Glee Project, right?

It becomes a cycle. I get angry because I’m sick, I get sick because I’m angry, and then I get angry that I’m sick because I was angry. I feel like I’m always just this far from treading water. I either have to artificially reboot – cancel something and create some free time so I can catch up on the stuff I fell behind on; or I end up turning to those around me and begging for assistance. Well, that’s not entirely true. Another outcome is that I just don’t get stuff done. I stop going to doctor’s appointments, I stop answering email, I stop checking Facebook/Fetlife, I stop answering my phone, I stop engaging in anything that might, y’know, make me feel human.

I know what the answer is. I’ve always known. But it’s sort of like menstruation – I’ve been doing it since I was 18 or so (late bloomer) and I’m 37 and I still don’t always recognize the signs that its on the way. Because when I get lost in the cycle, the first two things I jettison are the ones that always end up helping me in the end.

Sleep, and meditation.

I’m never sure how to address the sleep issue. Stress gives me terrible insomnia. It’s never a good sign if I’m only sleeping 4 or less hours a night, or if I’m sleeping in 2 hour shifts. Now, a part of that is also related to pain – obviously when my pain is bad, I don’t sleep as well (often I have to sleep in a particular position, and if I move even a little I wake up). Sometimes I end up taking Alteril – an OTC mixture of melatonin, valerian, and l-tryptophan. I don’t like it because the next day I’m in a fog and lack motivation to do much of anything, which is kinda not the point. I used to take Ambien, but it’s expensive and I got to a place where I couldn’t sleep without it.

Meditation is another ball game. I’m a giant hypocrite, in that when I get angry, I stop meditating because my brain won’t shut up. And yet I tell people all the time that it’s better to sit still and breathe for five minutes even if their brain won’t shut up the entire time because it helps them create a habit of it. But as someone who is supposedly good at this stuff, I have a short temper with myself when I have to go back to basics all over again. Although really, that’s meditation in a nutshell. There’s really no such thing as “an advanced meditator”. Because once you believe you are, you’re not. It’s a Schrodinger’s Cat thing. But meditation is totally within my control. Even just taking five minutes to slow and deepen my breathing would make a difference. I just need to give a damn first.

Sometimes I just need to get out of my environment and do something different for a while. That’s not as easy as it sounds, because I can’t just run away and pretend my life isn’t happening in my absence – I might as well stay home and watch Law and Order if that’s the case. I have to both get out of my routine, but not abandon it completely. So events don’t count, since I can’t spend hours answering email and writing there. (I always think I can, and then I totally fail, every single time.)

So what do you do? How do you break out of your cycle of anger-stress-pain-anger? What coping mechanisms work for you? How do you enforce meditation when you feel like everything is fruitless? I’m all ears.

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Kick Me In the Crotch

March 22, 2012 at 4:31 pm (Medical) (, , , , , , , , )

This is one of those updates I really don’t want to write. It’s purely a medical update, and it’s important for people who know me to know about. I thought really hard about just emailing a handful of people about it and keep my mouth shut otherwise, but when I started this blog one of the promises I made was that I would post about medical things I am going through.

Not an accurate depiction of either procedure.

As you might have guessed from the title, this little escapade has to do with my manly parts. Seems there’s something odd happening, and they have to do two surgical procedures in hopes of both figuring out what’s going on, and hopefully fixing it.

I’ll know more on Monday, but the first procedure (D&C) will be pretty soon – perhaps as soon as next week. I have to wait for two weeks after that to undergo the second procedure (ablation).

This likely means that I will be mostly housebound for April. I had a D&C in 1996 and it took me many weeks to fully recover. Supposedly, the second one will be easier to heal, but since I’ll still be healing from the first one, I expect it will take a little longer.

I don’t feel like sharing some of the speculation about what might be wrong, although cancer has yet again been introduced into the “possible” column.

When this is over, I will be sterile. I’m okay with this.

And yes, because everyone else has asked, I did ask about a hysto, and was told that this is a better first shot in the war. If this doesn’t work, then we’ll be talking about a hysto.

I’m not really up for a lot of discussion about this. I’ll likely post on Facebook when I know when the procedures are.

This is a depiction of the second procedure. They left out the part where they electrocute my uterus.

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Fighting the Avatar

March 20, 2012 at 12:18 am (Death and Dying, Disability, Living, Mental Health, Spiritual) (, , , , , )

When I think of the word “avatar”, I think of an image someone uses to represent them on the Internet. An icon, a picture, something that becomes the thing I think of when I think of that person. Now a days, it’s likely to be an actual picture of someone; sometimes, on virtual worlds like World of Warcraft or Second Life, it can be a character you portray. It is the only identity someone knows you as; you fit in a little box, on the side of a comment.

Del

This is my most common avatar these days. This is what I am becoming.

One of my struggles is that many of my friends either live far away, or don’t have the time or inclination to seek out social interaction with me. I used to be more proactive about it, I swear, but I admit that my own depression is part of the issue. However, I go out – and try to meet new, local people – at least once a month. Sunday I went to a munch in College Park, MD. It was nice and all, but no one who didn’t already know me took more than a few minutes to say hello. I tried to be friendly, start conversations, and what-have-you, but in the end it was just another place where I felt like a outlier.

Lately, people I thought were my friends have turned out to be something else. I’m not an easy person to get to know, and anyone who really knows me well will tell you that it’s a process. I’ve been hurt in some fantastic ways, and so I don’t open up to just anyone. If you actually get somewhere with me, one of the hurdles you face is that I tend to be pretty damn honest. I have a terrible trait of actually saying what I think, what I feel, what I know. One of my sacred duties is to be the Speaker of Hard Truths, and if you spend a lot of time around me that will eventually apply to you. It seems, however, that when I tell people that they think they can handle it, but when I actually say something that cuts to the quick, they are fast to withdraw.

I can’t lie. It’s actually a geas, or sacred “rule” that I can’t break. Being the child of Loki, one of the things He demands of me is complete honesty. Now, I can choose how I dress the truth up, and if I take you out to dinner before I give it to you, but in the end, it’s as true as I know it to be. This doesn’t mean I can’t be mistaken, or downright wrong,but if you ask me a question I will tell you what I know to be true. Sometimes, this makes me an invaluable asset. Other times (and more often than not), it makes me “that asshole”. People think they want to know the truth, but really, they want to feel good.

I’ve accepted that my social circle will always be kinda small. I “know” a lot of people, but if I were stranded in Mexico at 3am with a single phone call, I have very few people I could reliably call. I figured this out when I was stranded at the hospital with my phone dying the last time Ninja went to the ER. I can’t really call Ruth, who lives in Massachusetts, to come drive me a few blocks. (Although I know she’d do it if I really needed her to.) And I have local friends who want to be there, but have other responsibilities or distractions that keep them from it.

I admit, I’m in a emotionally vulnerable place as I write this. I’m fighting with my best friend, things with Ninja aren’t perfect, I’m hormonal and depressed and work sucks donkey balls. It feels like I have a trillion balls in the air and plates spinning and I don’t know how to keep it all going. Every time I start to focus on one thing, another goes kaplooey. I’m stressed, I’m tired, and I can’t seem to do anything for fun anymore. It’s not a good place. I’m working the Coping Skills Tango as hard as I can; I’m Google Hanging Out when I can, I’m calling friends to talk, I’m listening to uplifting music and watching funny stuff. I’m meditating like crazy, I’m writing down my feelings, and next week I’m seeing a new therapist.

But for now, I feel like I’m fighting becoming my own avatar. Wherein I only exist in these ephemeral words, in emails and Facebook statuses and G+ updates. I’m losing my own sense of being flesh and blood, of having real world needs like warmth and cuddles and sex and decadent desserts. I’m afraid if I were to unplug for a week, I’d lose my friends forever. As it is, I sense the world moving on without me, and it’s painful for me.

I have this strong sense that maybe this is part of the journey towards disability and death for me; the stripping away of any investment in permanence, even in humanity. Humans have a necessity of conceptualizing the present as being reliable, predictable, something they can hold on to with both hands. I have to see everything as being tenuous, to be keenly aware that even the things I thought were solid may evaporate in a moment’s notice. It’s one of the lessons of Death – it’s a capricious and cunning thing, and it takes away the illusion that anything – any relationship, any person, any situation – will last “forever”. I really liked that illusion.

A piece titled "On the inevitability of loss"

The even stranger part, for me, as I think more on this, is that when I die my avatar will remain. All these things that I am afraid I am becoming; they will be aspects of my personality that will outlast my presence on Earth. So however much I fight becoming an avatar, in a way it’s an important step in this process; that even though I see everything as being tenuous, I’m creating a body of work that others will be able to experience once I am dead. Maybe that’s Baphomet’s plan, forcing me to write when I’m emotionally and physically raw. It would be a completely different experience of me if I only wrote positive, glowing, hippy-dippy posts about disability and death. Although if someone else did it, I’d totally want to see that shit.

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Holiday Celebrations

December 21, 2011 at 2:25 pm (Medical, Spiritual) (, , , , , )

This is not the entry I wanted to write; this is the entry that is ready to leap out of my head.

I thought maybe my holiday malaise had to do with my  health; I’ve been feeling particularly crappy as of late and the “holiday spirit” is a high spoon activity. But the more I consciously take a step back from all the holiday craziness, the more I see each activity as an “opt in” or “opt out” situation. I can choose to decorate my house, or not. (I have chosen not to.) I can choose to send cards to my friends, or not. (I have chosen not to.) I can spend spoons on shopping, either online or in brick and mortar stores, to find gifts for as many people as I feel I want to, or need to. (I have not.) I can go to holiday gatherings or places that have holiday representations (I did this, mostly to support friends). I can do ritual to celebrate my holiday, or not. (I have chose not to, although this is a more complicated issue.)

I have read several accounts, from people who celebrate a myriad of winter holidays this month, that yearn for a return to the simplicity of celebration. One that I particularly liked was this one, written by an Anglican priest about wishing he could strip Christmas from all of the consumerism and holiday “traditions” that have nothing to do with the birth of the Christ Child. It is, after all, a religious holiday that many people have decided to secularize because it gives them warm and fuzzies about their youth. (Also note this graph that makes the point that most popular versions of Christmas songs were recorded during the baby boom’s childhood, which is why they’re recycled year after year and newer versions are usually disregarded as “fake”).

This dovetails into something about Yule/Winter Solstice that baffles me. As a religion, there’s a lot that has been done to differentiate between Paganism and Christianity. For those of us who were raised in a Christian tradition, these differences matter. I left the United Methodist Church to come to a religion that was markedly different than what I had known  before. Even though I bitch about it a lot, I value that in our tradition (for the most part), it is fairly easy to become clergy. I value that our holidays celebrate the cycles of the earth. And even though right now I am generalizing how most pagans feel about something, I value the idea that for the most part, pagans are encouraged to create their own sense of how the world works and what their mores and ethics are.

The only time of year where I see an incredible amount of bleed between Christianity and Paganism is Christmas/Yule. Granted, I totally understand that most of the trappings that we grew up understanding as “Christmas” (like trees, presents, lights, family gatherings, etc) were copied from older traditions surrounding celebration of the Winter Solstice. But for me, they look and taste like my childhood, which was Christmas. But more pagans than I can count hold onto these traditions, even Santa Claus, for their families and their children. And I hear it all the time – about how giving presents and trees and lights and decorations are not the purview of Christianity.

I dunno. I’m ready to concede that if Christianity wants the crushing crowds at Wal Mart, the feeling of obligation when your family requests that you travel during a shitty time of year to sit uncomfortably around a living room and try to be a “family”, the awkward feeling when someone you don’t consider a close friend buys you a gift and now you debate if you have to reciprocate or not, the many empty social obligations that tax your finances and your health, the crass consumerism and all the work that goes into creating a traditional Christmas, they can fucking have it.

I’m much more content spending the shortest day, and longest night, of the year alone in contemplation. Granted, I also like Yule rituals that focus on sharing what we already have (not what we have gone into debt to buy) so that we all make it through the winter – but for me, these days, that’s a lot more about emotional and social support and much less about physical or financial support.

This point of view may be strengthened by having a Jewish spouse. I have always thought I was aware of Hannukah, but it took actually talking to Jews about how much emphasis has been put on a secondary holiday in order to allow children to feel equal to their Christian (and perhaps Pagan) schoolmates. What I love about Hannukah is the simplicity of celebrating a singular, somewhat unremarkable miracle – the fact that when they needed oil to last eight days, it did. As someone who grew up poor in a house that used fuel oil for heat, I know I have experienced this miracle personally. And if anything, I choose to tie my Yule thoughts to this miracle – that by coming together, we can miraculously make it through the hard times together.

My life has become much more focused on the essential parts of an experience – I need to know, up front, what I want to get out of something before I engage in it. When your energy is low, and your health is challenged, you look at everything in your life and decide what the important parts of it are. When I go to an event, I look over everything that is happening, and choose the parts of it that I feel I really want to do to make me feel like I engaged with the event. Most of the time, that means teaching my classes, and maybe getting out to a social gathering or play space. I usually choose one or two classes that I’m not teaching to attend, but understand that it depends on how I’m feeling. So even though I may not be sucking the marrow out of every experience that comes my way, I can leave an event feeling like I got want I really wanted out of it.

This Solstice, I need to spend some time thinking about the parts of Winter we tend to ignore. We get all caught up in the pretty blanket of snow, but I’m much more concerned about what’s happening underneath. The dead leaves are rotting, turning into fertilizer, feeding the soil, so when spring comes the green life can erupt and bring with it new hope. Everything we parted with at Samhain is deep within the earth, brewing up new experiences and choices for us if we can survive the dark. So many of us have “turned Winter off”, by installing UV spectrum lights, so they can survive the melancholy and feeling of separateness that comes with the dark time of the year. Someone suggested, somewhat facetiously, that “Seasonal Affective Disorder is the reason for the season”, and I started to worry that maybe I, too, had this affliction. Let me be clear, I in no way mean to belittle those who rely on lightboxes to treat their mental illness; I just think that (similar to eating “gluten free”), it has become a self-diagnosed and treated “disorder” for some.

Even though I tend to get depressed this time of year, I choose to allow myself to experience these feelings of disconnectedness and worries about survival. In this three-part essay by Kenaz Filan about the power of melancholy, zie covers a lot of what I’m talking about here.

So I’m giving myself a lot of permission and comfort this holiday season. I am giving myself permission to only engage in what I feel honors what I’m feeling about this Solstice – and this year, it’s much more about the dark than it is about the light. I did get some good gifts, and gave a few as well, but I’m not giving out gifts out of any sort of obligation. I am only going to celebrations that hold meaning to me, or enhance how I choose to celebrate this holiday. I refuse to allow the stress of consumerism, or trying to recreate some fantasy version of Christmases from my childhood, to dictate how I interact with my religious holiday.

Happy Whatever-You-Celebrate, however you choose to celebrate it.

Short actual medical update: I saw my ID doc about what to do next, since I experienced withdrawal again when I tried to treat the TB. Unlike the “evil ID doc”, who just threw her hands up and told me she just wasn’t going to treat it, he admitted that this was too complicated for him to treat, and referred me to Johns Hopkins. This is not so great in my book, as I have had bad experiences at JH in the past, but at least it’s better than *nothing*. When I tried to make an appointment yesterday, I got shuffled around for ten minutes, and then put on hold for so long that I “had been on hold for the maximum allotted time”, and was forced to leave a message. Not an auspicious beginning.

Also, due to some complications beyond my control, I have put off doing anything with my neurologist until after the new year. So right now, I’m mostly in a holding pattern.

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