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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If I Eat a Crow, Will I Get Sick?

September 28, 2013 at 1:18 am (Living With Chronic Illness, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , )

I get a lot of odd search terms (what people put into a search engine and find my blogs). But one of my all time favorites has been “If I eat a crow, will I get sick?” I mean, it’s a good idea to check before diving into strange meat to see if there are any standard precautions, y’know, like not eating raw chicken. And honestly, I’ve never done the homework to find out the answer to that time-old question. I mean, I figure any source of meat, if thoroughly cooked, is probably edible.

But that’s not what I wanted to write about today. It is, however, a someone apt title for my newest and most amusing symptom.

I know it’s been a long time since I’ve updated you guys on my medical situation, and part of that is because I’m in a state of limbo; a brand new, completely different, confounding medical problem has become the star attraction. I’m wary to say too much right now, because it’s in that stage where my new PCP just spouted a lot of guesses based on what they saw in my bloodwork and some of the things are game-changers. I’ll put it this way: the person who accompanied me to the appointment disagreed with my remembering of what the doctor said, so to be extra clear that I wasn’t worrying over nothing, I emailed her and got some clarification (I was right, if that matters.)

So the new issue is my blood. There is something funky with both my red blood cells and my white blood cells. The only white blood cell disease that has been ruled out is leukemia. The red blood cell problem is likely just anemia; but the biggest symptom is what I want to write about because I find it so damn funny.

Pica is a disorder I’ve found endlessly facinating since I was a child. I have even devoured every episode of “Strange Addiction”, as most follow a formula of “Person who does weird thing” followed by “Person who eats a nonfood substance” (like toilet paper, bathroom cleaner, or cornstarch). I once even asked a friend about a trend on the show, where African-American women were in the majority of the latter-half segments. She told me that, indeed, pica is common in African-American women (as the wikipedia article says), and that she herself had tried eating a non-food item after an errant craving.

My pica snuck up on me. Normally, when I’m at home, I don’t use ice in my drinks unless, for some reason, I have to drink water. (I really dislike water unless it is very cold.) But as the dog days of August came in, I started filling up my ice tea tumbler with ice cubes before adding the tea. Once the iced tea was gone, I would suck on a few ice cubes and maybe bite them so they would break into smaller pieces (making them easier to suck). As time wore on, I was putting less and less iced tea into the cup, and just filling it with ice so I could eat the ice. I didn’t think of this as “eating ice”, though; I still thought I was drinking iced tea.

It got to a point where I could no longer deny that I was now skipping the iced tea entirely and just eating huge cups of ice. I would wake up in the middle of the night because my craving for ice was so strong. Instead of pouring myself something to drink with meals, I would just pop an ice cube in my mouth every once in a while. Finally, Rave noticed the trend and decided a) this is a “thing” now, and b) we needed to get smaller ice cube trays so I didn’t break my teeth or hurt my jaw.

It seemed pretty harmless. I figured that it was, at the very least, upping my water intake. Almost every time I’ve been to the hospital or ER, I’ve been dehydrated. The last trip, in August, I was so dehydrated my urine was reddish orange. When I get in pain, I stop drinking. I don’t know why, but I do. And when I am super nauseous, the only liquid intake I can handle is ice, or water with a lot of ice.

It became such a habit that I would fill a mug with ice before going to bed, both so if I awoke wanting ice it would be there and so I could use the water in the morning to take my pills. Rave now makes sure I have a cup of ice at hand most of the time she is home.

I saw the doctor last week and I first brought up the restless legs. It is a symptom I get any time I go into opiate withdrawal, but I am currently on a low dose oxycontin regimen and have no withdrawal symptoms other than the RLS. It’s so bad that there are full nights I’ve lost sleep because every time I laid down I would reflexively start rocking my legs. Even when I’m sitting up, I get this crawly energy that runs up my calves. Nothing else relieves the sensation but moving my legs. I do use my foot bike when the feelings are overwhelming, and the fact that is has a backup motor (so if I don’t have the power to push the peddles against resistance, my legs will still go in circles) is super helpful in those times, especially at 3am when I’m exhausted and just want to go to sleep.

Between my odd bloodwork numbers and the RLS, she was already thinking that something is up. When I told her about the ice, it clinched it. I basically have all of the markers of iron deficiency. So that’s in the works.

However, the pica has “grown”, I guess. It’s hard for me to admit this, but I am trying to keep a lighthearted sense of humor about it because otherwise I would probably freak out to the point of uselessness. In the past two weeks, I’ve had cravings for dirt (another classic pica symptom), cigarette butts, and wanting to chew on wood. I have not given into any of these for obvious reasons, and when I get the odder cravings I just get more ice and eat that until it passes.

I am not at all concerned about this being some sort of mental health issue, because if there’s any disorder I know for certain I do not have, it is OCD. I am not autistic, nor am I eating ice in some odd way of getting attention. In fact, I prefer to eat my ice in my room alone.

I also learned that pica gets its name from the Magpie (another reason why the Crow thing seemed appropriate) because people observed that magpies will eat just about anything.

So there it is. Maybe this is some odd coincidence, since I’ve always been fascinated with pica. I had a dog with pica when I was a kid, who ate all sorts of nonfood things. Now I know what she was going through, I guess.

I should know more about the blood issues in a week or two. Longer, of course, if they turn out to be more serious and require further testing.

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The Jig Is Up

July 20, 2013 at 1:20 am (Chronic Pain, Living With Chronic Illness) (, , , , , , , , , )

This is not the blog post I’m supposed to be writing.

You may have noticed that I haven’t been as active online as usual – less blog post, no inane facebook replies, not even a “like” on a picture on Fetlife. My Gods put a giant smackdown on my head, and until I’m ready to compose This Great Entry that is, mostly, entirely their idea, I’m to keep my nose out of the Internet. I can give short email responses to timely matters if it is necessary, but everything that can wait, will wait.

I got a writ for this entry, because something somewhat major happened today in terms of my health and well being, and well, this blog originally was a way for me to tell large swathes of people about that sort of thing, so here I am.

The title is two-fold: one, “the jig” being my only slightly explained Internet silence, and the second “jig”, well…is frustrating and good in turns.

You may remember that at the end of my last hospitalization, I ended up with some terrible miscommunication between my pain management doc and the hospitalists. By the time I went to the pain doc to get meds, they had decided that they didn’t want to write scripts that matched what the hospitalists had decided, and ushered me out of the office with even less than a “see ya!”, as the doctor only communicated the end of our five-or-six year relationship via a nurse. I was not allowed to speak to him directly, at all.

Luckily, as I was leaving JH, I had asked my surgeon for a referral into JH’s pain management program, so I only had to find a month’s worth of meds until I was seen there; the surgeon begrudgingly supplied these. Then I had my new patient appointment at JH Pain Management, and I decided that Mistress Poppy had it out for me something bad.

At the first appointment, about a month ago, I was told that they would be reducing my opiates slowly over time. This made sense, as they had reached somewhat ridiculous levels when I was discharged from the hospital; however, my assumption was “reducing to a more normal amount”. (More on this later.) I was then informed that I would have to see a weight loss doctor (but not a surgeon, thank something), and agreeing to that was a non-negotiable point. I tried to explain that I had seen several weight loss doctors in my lifetime, and any time I’ve lost a significant amount of weight I have developed more health and pain problems, but it fell on deaf ears. Finally, I was told that the pain management office wouldn’t actually be writing my scripts – they’d give me a month’s worth, but no more – and it was impinged upon me that I had to find a local Primary Care Physician (PCP – what most people think of as “the doctor”) who would write the scripts for me. Oh, the JH Pain docs would still meet with me and decide the dosages and schedule, but the PCP would be actually doing the writing. I was pretty suspicious of this, but I was assured that they have plenty of PCPs who go along with this scheme, and I should have no problem finding one. (I did ask if they had a list of doctors who “played along”, and was denied.)

Well, it doesn’t take a medical genius to see why this is beyond stupid. The DEA doesn’t give a shit who decided how much opiates someone gets, they care about the doctor who actually wrote the scripts. We called over 20 PCPs both in Hagerstown and in Frederick, and of the ones who actually were taking new patients, and could see me before the month’s deadline was up, only one agreed to undertake this unholy arrangement, but when I showed up in his office he, too, decided against it. He referred me to a different pain management doctor, who wouldn’t even take my call after he found out I was already on opiates.

So my drugs ran out. Slowly, as I have learned over many years to skip a dose here and there if you can help it, should something exactly like this happen. I started calling the JH Pain doc’s office about 8 days before the deadline, and got no response from them at all. It was only when my medical advocate demanded to speak to the practice manager that I was finally, begrudgingly, granted an appointment – in a week. So you were spared a week of me posting self-succoring Facebook statuses about how crappy I felt on practically no pain meds whatsoever.

I get to the appointment today and I am pretty bad off.* This is likely how it didn’t hit me right away when my pain doctor lets me know that we’ve – I’m pretty sure this “we” does not include me – have decided to wean me off of opiates entirely, in the span of one month. I was so focused on please gimme something for the pain and the rocking, doc that I’m pretty sure I totally misunderstood him at first.

But no, that’s exactly what he said. And I guess “we” agreed. So although I was lucky to get scripts – this office has a weird habit of constantly reminding you that at no point are they contractually obligated to write a prescription for you, I guess so you feel doubly grateful when they do – I got the most complicated effing scripts in the history of prescriptions. The instructions on each bottle are a paragraph in themselves. Where a normal prescription bottle may say, “Take two pills every eight hours for pain” or whatever, these say, “Take four pills every eight hours for the first week, then two pills every eight hours the second, then two pills in the morning and one at night on the third…”

I had only enough wits about me, after my weaning-off-Fentanyl experience, to splork the words “Ativan” and “Clonodine” – two meds I’ve been given in the past to treat withdrawal symptoms. With the calmest demeanor ever, my JH pain doc explained that he’s “moved away” from prescribing benzodiazapines, although I could feel free to ask my PCP to write for them.** He did, however, agree to the Clonidine, mostly because it’s primarily a blood pressure medicine that no one would ever use recreationally, ever.

If this wasn’t enough for my poor, withdrawal-riddled brain to wrap itself around, I am now on a mysterious “list” for an “in-patient pain program”. I tried to explain that I don’t have the kind of life where I can just hop off to the hospital for an unknown amount of time, but the odd assurance I received was that this wasn’t happening today, as the waiting list is very long. (Of course, this means that not only will I get no notice on when I will be going to the hospital, but that it could be anytime starting tomorrow until 2020.) The concept is actually kinda cool, in a way that unfortunately reminds me too much of a psych admit: they wean you off everything you’re on, then put you in the program and with a team of pain docs, physical therapists, counselors, occupational therapists, and others. Together they figure out a long-term strategy for dealing with your pain. There is some, but not much, focus on what’s actually causing your pain (as most un-Del like people know that sort of thing), but it might lead to some diagnostic testing, at least.

So where does that leave me?

Well, the last time I detoxed from opiates was, oh, the worst thing that ever happened to me physically. It was done over three months instead of one, with the idea of taking very gradual steps. This time, I have 30 days to go from “holy crap I didn’t know they made a pill with that many milligrams” to “here, take some Tylenol”. At least when I did this last time, I had a different opiate at a steady level. What that meant, was that although the withdrawal sucked really bad, my pain was under some modicum of control. Not so this time. By the end of August, I will be taking Mobic, which is an NSAID, and little else. If this past week was any sort of guide to what life will be like on way less medication, not only did my arms and legs hurt so bad that there were times I seriously thought about wetting the bed rather than having to walk to the bathroom, but my still-healing surgical wound burned so deeply I couldn’t eat. (Which I guess helped the first problem in its own way).

There is an upside, even though it is very difficult for me to see now. Many specialists have turned me away, or blamed my symptoms, on the opiates. In fact, the reason the JH pain doc is doing this, even though I’m dubious that it actually applies to me, is valid. His reasoning is that there is a condition called hyperalgia, where your brain gets so used to opiate medication that the medications start causing more pain, and not treating it. As I still get relief from my meds, I am more than a lot skeptical that this actually applies to me, but even if it doesn’t I’m sure my opiate receptors could use a vacation. Most people who need chronic pain meds take a “vacation” now and again, so their tolerance can lower closer to normal people’s. It’s helpful for people like me, who seem to need a lot of surgery, because there does come a time when they just can’t use opiates at all to treat pain, and there’s not a lot of other options. So by taking a “vacation”, I am future-banking a lower tolerance to pain medication, so any future surgeries will not need the amounts that make each nurse, every shift, look at my file and go, “Um, what?”

And honestly, if there is an answer out there for my pain that isn’t opiates, I’m all ears. I’m not a fan of being on them, and going off of them could open up something very important – the ability to drive. I don’t drive for a variety of reasons, but the first and foremost is that if I were ever pulled over and they thought to run a blood test, I’d be a fucking goner. And there are times when I know my reaction time is slowed down from the meds, and I’m infinitely distracted. So resetting the system may allow me to drive my own car, which I haven’t done for many years.

That all being said, I’m still displeased that this was sprung on me when I was actively in withdrawal. If something goes awry – which it can, which is why many people undergo this sort of thing as an inpatient – I could very well argue lack of informed consent. I probably wouldn’t win, unless my judge has experienced what it is like to be in active withdrawal and a ridiculous amount of physical pain, but I don’t think I’d be laughed out of court, either.

It is very likely that between The Entry They Want and the terrible withdrawal and pain I have to look forward to, I’ll either be on the Internet every fucking second I can, bitching about how terrible my life sucks; or you’ll hear from me some time in September.

*Those who know me intimately will attest to this: I have a collection of pill bottles with one pill in them. In the same way that I hate reading the last chapter of a series of books because the world will cease to exist in my head, I hold onto those pills, telling myself that someday it will be that bad and I will be pleased that present-me saved the damn pill for future-me. This week drained every resource I had, and when I told Rave I had thrown out several now-empty pill bottles, the blood drained from her face. She knows how long I’ve stowed away some of these “last resort” meds, and I spent every single one of them this past week.

**You know, the imaginary PCP I’ve found who will play this stupid game. Well, in all honesty, I do have an appointment at the end of August for a PCP whose practice is under the JH umbrella, so there’s a chance this may work out, but not until after I’ve detoxed from my meds.

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Maryland House Bill 1453

March 6, 2013 at 8:50 pm (Chronic Pain, Disability, Living With Chronic Illness, Medical) (, , , , , , , , , , , , , , )

You may have read some of this on my Facebook page, but it’s so vitally important to me I’ve decided to develop an entire blog post about this.

I’ll start by providing you the link to the NORML page about this bill:
Maryland House Bill 1453

From NORML’s page:

Delegate Curt Anderson (D-Baltimore) has introduced legislation, House Bill 1453, that seeks to make Maryland the third state to legalize and regulate the adult use of marijuana

House Bill 1453 would create a system to regulate and tax cannabis in a manner similar to how the state handles alcohol. It would instruct the Maryland comptroller to license marijuana retail stores, wholesale facilities and testing facilities and apply an excise tax of $50 per ounce on wholesale sales, with proceeds going to fund treatment programs to prevent alcohol, tobacco and drug abuse.

This is an issue very, very close to my heart. As many of you know, I suffer from extreme chronic nausea, sometimes unable to eat even a single meal a day. Although I am on a nausea medication with a very high potency, even when it removes the sick feeling I still don’t find food attractive (instead, it just reminds me how I’m going to feel when the med wears off). I have used cannabis in the past to great success; but since I’m beholden to a pain contract in order to obtain opiates, I am randomly drug tested with the risk of being thrown out of the program with no more than a single month’s prescriptions (and no support for withdrawal, which can in some cases be  lethal). Therefore, I can no longer take the risk of using an herbal supplement that I *know* works, not just for my nausea, but for my pain, insomnia, and neurological symptoms like tremors and dystonia.

Even though this bill isn’t for legalizing medical marijuana per se, by decriminalizing it completely, there’s strong evidence that my pain doctor cannot remove me from the program for engaging in legal usage of herbal supplements, as long as they aren’t contraindicated with my current regimen. And even though it’s risky to admit, my pain doctor has, on more than one occasion, made vague references that he wishes this were available to me, but that the program cannot condone the use of illegal substances. So by decriminalizing the sale, possession, and usage of cannabis, you’re not only helping our economy, freeing up our police force to focus on violent crime, and legalizing access to a substance that does less harm to the human body over time than either alcohol or tobacco; you’re also de facto allowing patients access to a powerful supplement that has been proven to be of aid to persons with MS, AIDS/HIV, cerebral palsy, and many other conditions. Because after all, if doctors can’t deny you service because you use legal intoxicants like alcohol or tobacco, then my fear, and the fear of many others in programs that rely on urinalysis to gain access to treatment, would be alleviated for good.

Even if you, personally, don’t enjoy cannabis, and wish that others wouldn’t use it, that doesn’t mean that it shouldn’t be available to the thousands and/or millions of adults who use it responsibly already. There are so many worse crimes we could be spending the millions of dollars we do on enforcing a law so easily circumvented. And the mandatory minimums are a joke; people with small amount of cannabis get longer prison sentences than rapists or child molester. It’s ridiculous, and has to stop.

If you live in MD, click on this link to send a message to your legislators about this issue. If you don’t, you can put my zip code into the form – 21742 – (it will ask for my street name, if you need it email/FB/Tweet me and let me know) and just tell them about me and my story. It has been proven that legislators vote their conscious in the absence of communication from their constituents; but vote differently if the people inform them they feel strongly one way or the other. So even though it’s a little internet form letter, it still gives them an additional push towards voting the way the people want.

Thank you. I really mean it. Even if you just read this, now you know my story and hopefully that will urge you to action.

The link, again, to the NORML page where you can contact your legislators.

The full text of the bill is also available here

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Things are Looking UP!

November 26, 2012 at 9:38 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , )

I get comments sometimes that this blog has turned into one gripe after another about how negative my life is; a “bitch fest”, “too much focus on the negative, and not enough positive thinking”, etc. So I thought since I’m having a pretty red-letter day that I would take a moment to let all of you know some of the positive things that are going on in my life.

First and foremost, when I was seen for my post-hospital stay follow up, my surgery team jointly decided that there was no need for me to be seen again until my pre-surgery appointment on December 14th. This is great news, and basically turned 4 appointments into one. We decided to leave the drain in until surgery, both to reduce the number of appointments and also to keep the abscess from cultivating more ick before it’s surgically excised.

We’ve found a great service that we’re going to be using to control all the informational traffic around the surgery and aftermath; rather than litter social media and having multiple phone trees, we’re using Wiggio as our sole information stream. We chose Wiggio because it has a ton of features that will be useful for us, including the ability to send mass text messages, have a shared calendar to schedule visits, project folders to organize different things that I or Rave will need help with, and lots more. The way the Wiggio works, you need to send us an email at delandrave@gmail.com to request an invite; we did this so we can know everyone who is on the group and make sure people who are on there are more than just passively interested in what’s going on. There will be some posts made to social media, so if all you want to know is if I’m out of surgery or ICU, there will likely be posts to that effect eventually. On the other hand, if you want to be actively involved in helping Rave with things during my hospital stay, or want up-to-the-minute information on my situation, please feel free to ask us for an invite. If you’re not someone we already know, you may want to include some information as to how you know me and how you expect to be helpful, so we have some idea. Like I said, we want to make sure everyone who is on the Wiggio is someone we trust to be an active partner in what is happening.

In that vein, the house that we’ve been affectionately referring to as “The Squat” is on the market, and the arrangement was that we could stay here until it sells. Well, an offer has been made, and if the bank accepts it, we have 45 days to vacate the premises. But fortunately, we found a perfect place for us right in southeastern Frederick; Rave went to tour the house today and found it to be old and a little beat up, but otherwise totally awesome. It’s on a 41 acre horse farm, a four bedroom house with a master bedroom/kitchen/full bath all on the first floor. I love that we’ll have space for two guest rooms, which will double as a sewing room for Rave and an altar room for me. We should be getting an application tomorrow; we tried to make a deposit because the landlady said she’s had a LOT of interest, but she wouldn’t accept it. So for now, we just ask that you keep your everythings crossed that the application goes through with flying colors and we can solidify a place to live. It would mean a large burden off of both of our shoulders, so we can focus on the surgery without having to split that focus with the arduous task for finding a place to live.

And what’s made that all workable has been the incredibly wonderful response to our request for help. We’ve received so many packages from my Amazon wish list, and a blessed amount of financial assistance. We have enough to make a good deposit on the house, should we pass the application. However, we can always use more help, so if you haven’t had a chance to check it out, please take a look at my entry detailing the many ways you can be of assistance to us.

That’s not all! Rave went down to my old house to pick up some belongings and happened to find a piece of mail I have been waiting on for four months! Yes, that’s right, my name change has been approved, no court date needed! I am so incredibly pleased that my name is finally my own in all senses; I have been told by my Gods that I am *never* to change it again, no matter what. I finally have a name I chose for myself, one that represents who I am and how I move in the world. I took my long-time nickname and nom de plume, “Del”, as my first name. I kept the middle name my parents gave me, because it’s pretty awesome and also as a tie to my familial line, so it stays “Astra”. Finally, I was able to shed myself of my STBX’s last name (which I wasn’t thrilled about taking in the first place, but did it as a token of my love and devotion to him) and take my Clan’s name, something I’ve been wanting to do for quite some time but my STBX was totally against. So my full legal name, which I am unafraid to post on the Internet, is Del Astra Tashlin.

Another great thing is that I am now on a course of drugs to finally treat my latent tuberculosis, and I haven’t had any withdrawal or other terrible side effects. I, by no means, am trying to say it’s been a walk in the park, especially combined with all the antibiotics and other meds I’m on, but it’s nothing like when I tried the Rifampin, twice, so I am so pleased that someday, I will be TB free.

So in all, things have been looking up here at The Squat. We’ve finally hit a streak of good news, tons of support from our friends and family, and are preparing for a surgery that, although it won’t heal *all* the problems I face, will significantly reduce my suffering (especially in terms of infections and repeated hernia surgeries) for some time. There is hope that while I’m in the hospital, they will be able to run a battery of tests to help discover why my immune system seems to be so suppressed/why I seem to get every infection that walks by, as well as possibly transfer my pain management to an office closer to where I live now (the one I currently see is now over three hours away!), and also get more Johns Hopkins doctors interested in my case so I can get some integrated care – where the ID doc knows what tests the neurologist ran, and the pain management doctor can talk to my surgeon about how to administer meds so my chronic *and* acute pain can be treated simultaneously, and the like. This is all very exciting, and a really good reason to live, which is the real thing I’ve been looking for these past four months.

Thank you to all the Gods and Spirits who have been with me patiently while I thrashed through my suffering! May they stay beside me through the trials ahead, but also be able to celebrate with me all the good things that have come into my life! Thank you to all the people who have done the same!

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This is Not The Surgery I Ordered, Sir

April 9, 2012 at 11:10 pm (Hospitalizations, Medical) (, , , , , , , , , , , , , )

I got a gentle nudge that I hadn’t written anything about my surgery in specific, and how the recovery is going. I can’t promise I’ll share all the horrid details, but I hope you’ll feel like you know what’s going on.

So last Thursday I started having lower abdominal cramps around 4pm. (Right after I posted, in fact.) I get these from time to time, and lately I’ve had some serious hurty bouts of them, so I figured it was one of those and slowed down and started watching my Netflix and trying to wait it out.

About two hours later, I started getting seriously nauseous. Also not alarming for Dels, so I took one nausea med, and then the other, stronger one when that didn’t seem to help. The cramps were getting pretty serious, and showed no signs of slowing down.

I really fought the idea of going to the ER, because I’ve been to the ER with ab pain before and one of two things happen – either they find nothing and I go home and eventually feel better, or on rarer occasions, it’s something really serious and I end up going through a medical ordeal. Neither of these appealed to me, and usually if I just wait, they go away.

I tell Ninja that if I”m still in pain at 8:30 I’ll entertain the idea of going. It comes and goes. Maybe the cramps are getting better, or maybe I’m convincing myself of this so I don’t have to go to the ER. 9:30 comes and goes, and it’s getting worse. Finally, at 10 o’clock we decide that at the very least, I might be able to get some heavy duty pain meds if I go, so we find someone to take us (yeah, remember that we both don’t drive? So we were calling friends at 10:30 at night looking for someone to take us!) and go directly to the actual hospital and not the more local ER extension. Although I’ll be seen faster at the extension, if it’s serious there’s only so much they can do before they have to transport me via ambulance to the “real” hospital, so we might as well just go there.

Let’s cut to the chase and say that I was in the ER for 36 hours without sleep or food. They kept moving me around, and once tried to move me to Labor and Delivery. They let me know that I needed surgery by telling me they had called The Weight Loss Surgeon (we’ll call him Dr. WLS) with whom I have some bad history. I wasn’t thrilled, but I knew why they did it – he’s also a general surgeon and because of his experience with bariatric patients, he’s the best surgeon to do abdominal surgery on someone like me. I later learned that I had a ventral hernia – my second – and it needed to be fixed.

This is what a ventral hernia looks like from the inside. Basically, part of your intestine breaks through the abdominal wall and can get trapped. It hurts quite a bit.

Dr. WLS shows up and the first thing he says to me is, “Weren’t you supposed to have weight loss surgery by now?” He and I have a bit of a back and forth, with me telling him that my neuro thinks that the rapid weight loss I experienced while under Dr. WLS care last time caused or exacerbated my neurological condition. Dr. WLS disagrees, telling me I likely have early onset Parkinsons (!!), and he demands to know who my neuro is. I tell him, and later on he actually called the neuro to demand why the neuro told me this when it was impossible. The neuro stuck to his guns, but Dr. WLS just dismisses this.

Anyway, I tell Dr. WLS that I’m not interested in weight loss surgery. He tells me that I have 3 options – I can go home and do nothing, but this is dangerous and can lead to serious complications, I can go to another hospital that “specializes in hernia repair” (he actually listed two other hospitals with bariatric units), or I can listen to his lectures on weight loss surgery and he’ll do the repair that night. He is surprised when I tell him I need time to think it over. I call patient advocacy and they aren’t pleased with these options.

Dr. WLS returns, a little cowed. We agree to disagree, and I make him promise that if he does the surgery, that he won’t bring up weight loss at all, or weight loss surgery in specific, until I’m seeing him in his office for surgery follow up. He agrees.

I am brought directly from the ER to pre-op, and I don’t know if I have a room to go to when they’re finished. They actually warn me that I may need to go back to the ER if they don’t have a room. This makes pre-op so much more fun. [insert Mike the Surgical Nurse story here]

The surgery goes well. I am wheeled into post op and I hurt all over. Not only from the surgery, but also from being in one position for so long, and also because I’ve had all kinds of tubes in me, some of which were still in (a nasal trumpet, which sounds more whimsical than it is, and a foley catheter). After a few hours, I’m taken up to a real room.

I was given an epidural to help with the surgical pain. It does okay – I still felt some discomfort when I moved, and I was hitting the dose button often – but I end up going into opiate withdrawal because they deny me my maintenance pain meds for over 48 hours and the epidural isn’t enough to ward that off. The hospitalist decided I am on too much OxyContin and cuts my (prescribed by my pain doc) dose in half. Somewhere along the way, they also tell me that my A1C is three points higher than it was six months ago, and now I need mealtime insulin. I’m baffled by this but do not argue.

Unfortunately, it wasn't tequila. Might have worked better.

Fast forward through some bad  nurses. It gets to be time to remove the epidural. Dr. WLS tells me that they’re going to walk me from the epidural to IV pain meds to oral pain meds. This is not what happens. They take the epidural away and I am given less pain medication than I take on a day-to-day basis to cope with the surgical pain. Obviously, this fails to quell the pain I’m experiencing. I stop eating food, and when doctors/nurses try to encourage me to eat, I tell them that I want to, and I will when my pain is below an 8. It takes almost 12 hours before finally I’m given a bolus of IV dilaudid, and am given the option of IV push pain meds to supplement the orals.

However, I’m totally guilted by everyone – the hospitalist, Dr. WLS, and even the nurses – every time I ask for IV meds. I can’t go home until my pain is controlled by orals, they say. I tell them that it’s insane to think that my day to day maintenance drugs are going to be enough to cope with not one, but three incisions in my abdomen, one of which is on a part of my body that experiences a lot of pressure when I sit up or walk. Even the night before I was discharged, I got a dose of IV meds. But they’re so keen to send me home, and at this point I’ve had less than six hours sleep in six days, I just nod my head and agree to whatever they say.

I get home and call my pain management doc just to inform them that I was in the hospital, and that I was given a med to deal with pain but that it was cleared by the hospital with them. They tell me that no one ever told them about the med, and if I have already filled it I am in breach of my contract. Thank the Gods I hadn’t. I get their okay to fill the med, but only if I stop taking my other breakthrough med. This sucks because the hospital’s plan was to augment my regular drugs with the new drug, not replace one of them. So needless to say I’ve been in some pretty bad pain since I’ve been home. But I have slept like I invented sleep, and that’s been good.

Just keep going until you feel less sugary, I guess.

If that weren’t enough, I was sent home with insulin, but with no instructions on how much to administer. I had to call the hospital’s diabetes educator, who was deeply embarrassed and shocked when I told her that no one told me how much to give myself. What’s funny, is that since being home, I rarely test high enough to warrant insulin, and when I do, it’s just over the limit for the lowest dose. I am having my A1C retested at my primary care doc’s next week; I think something hinky is going on.

 

Tomorrow I see the pain doc, and I’m praying together we can find a way to get my pain under better control. As of now, I can basically lay down (on one side, because I have a drain in the other), sit up for short periods of time, and waddle to the bathroom. Anything more than that is too taxing, pain wise.

The other surgeries, the D&C and the ablation, are on hold for now. I’m hoping to be well enough by mid-May to get them then.

And I’m bringing my nutritionist/trainer to the follow-up appointment with Dr. WLS, so she can tear him a new one if he tried to put me on protein shakes or threatens surgery. I like having attack jaguars.

So that’s where things are. I hate that this happened, I hate the timing of it, I am very serious about wanting to address why I keep having hernias (I have a weak ab wall; my trainer is all over working on that once I am healed from surgery), but for now all I want to do is sleep a lot.

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Eating (Gluten Free) Crow

March 9, 2012 at 10:07 am (Chronic Pain, Living With Chronic Illness, Medical) (, , , , , , , , , , , , )

It seems to be the Del de Dao. A well-meaning person will tell me about how their SisterFriendFatherInLawVeternarian tried [thing] and saw miraculous results. I ask my doctors about [thing], and I get mixed messages. I do a little research, and I hear both positive and negative stories about [thing].

If [thing] is popular, or the hot-new-treatment-of-all-your-ills, I’m about as resistant to it as someone whose favorite indie rock band was just seen on MTV. I don’t know why this is, honestly. I’m not a follower, and that streak in me runs so deep that when something might even be good for me, if it makes me feel like a follower I decide not to do it.

Yet somehow, in the end, there I am, doing [thing]. Sometimes it’s the best decision I’ve ever made, and sometimes I was totally right. Most of the time, the effort to do [thing] is greater than the benefit I see from [thing], and so [thing] falls by the wayside. That even applies to alliopathic treatments as well; if it doesn’t make a tangible difference in my day-to-day, I usually give up.

The most recent example of this was acupuncture. It is something you can’t avoid reading or hearing about if you have chronic pain. The overwhelming messages out there about pain and acupuncture is that it makes a radical difference. Most of my friends who won’t or can’t take opiate medication subsist on acupuncture for pain management. I was resistant to it for a couple of reasons, the biggest being that any kind of “standard” energy work (that isn’t tailored to the client specifically) seems to affect me in a negative way, and from what I understood about acupuncture that was its mechanism. If client complains of X, put needle in Y, regardless of who the patient is and why X.

I made the decision to change my curmudgeonly ways and give it a shot when I decided to go off the Fentanyl. As I’ve said before, Fentanyl is basically legal heroin, although some argue that it’s more potent. I was on a high dose, and I knew the detox was going to be pretty bad, and that I was likely to see a radical increase in my pain levels. I happened to have a friend who had graduated from a well-respected local acupuncture school, who had a good sense of the fact that I was energetically weird, and was willing to work with me to see what we could do. It didn’t hurt that she could come to my house, either.

My general policy on any sort of treatment or lifestyle change that I choose for medical reasons is that I will give it three months. I figure that’s long enough to see a change if a change is coming, but not so long that if it’s having a negative overall effect that I can’t recover. (Remind me some day to retell the story on why only “eating” protein shakes and tofu for eight months was a colossal mistake.) That’s the commitment I made to the acupuncturist; I would do whatever she suggested within reason for three months, and then I’d re-evaluate my situation when all was said and done.

I will admit that in this case, it was a tough situation. Not only did I have all the normal Del symptoms, but I was in deep withdrawal from the Fentanyl and there were many sessions where all I was really interested in treating were the side effects of that. But I did just about everything the acupuncturist suggested; I bought supplements she thought would be useful, I allowed her to try whatever treatment she thought best, even when I was wary of the outcome, I was straightforward about my experiences so she could shape a treatment plan.

Unfortunately for me, and I guess for her too, it didn’t work out. I found that the effects were negligible, both on the withdrawal symptoms as well as my pain. There were a handful of sessions where I felt better for a few hours afterward, but as soon as any sort of “real life” intruded on the feelgoodness, it disappeared. I had several sessions that actually aggravated my pain or had other pretty unpleasant outcomes, including a notable session (during that wacky earthquake we had over the summer) that triggered some of my mental health issues in a serious manner. There was one treatment in particular that I felt probably did actual damage to me. Considering that I let her choose how often I saw her (which turned out to be 2-3 times a week, and I believe in one week it was 4), it was a pretty expensive thing to get such a small return on. In the end, I decided to stop treatment and see if I missed it; I actually found that I was much happier when it was over.

As you might be able to guess from the title of this post, I’m getting ready to undergo another new-hot-treatment that’s been getting a lot of press. I want to make it clear that I’m pretty damn skeptical about it, because eating gluten-free feels an awful lot like the 2012 version of the Atkins diet in 2002 (which I also tried). The “eating crow” part is because I’ve questioned some of the acolytes openly on their celebratory posts, and I’ve argued with people who have suggested this treatment to me in the past. Because caffeine gives me bad side effects, right now I rely on carbs like bread and crackers (and admittedly, sometimes cookies and muffins) for quick cheap boosts of energy and to increase my pain tolerance. I’ve been tested several times for Celiac and they’ve all been negative. However, this time I’ve been won over not by the hype, but by the sincere faith of the person I’m trusting to walk me through this experience. She’s a professional-level CrossFit competitor who has studied the affects of nutrition on the body and is probably the most knowledgeable person I’ve met on the subject, professional or amateur. She’s currently working on coming up with a diet plan that is functional with my current limitations (limited access to my kitchen, mini-fridge, needing a fair amount of ready-to-eat food, not heavily reliant on raw vegetables, with a fair amount of choices for eating out/away from home, and allergies) as well as a few exercises that I can reasonably handle given my body and its quirks.

I’m not looking forward to this, but at the same time, I am holding out hope. That may sound a little paradoxical, but it’s the truth. One of the reasons I am overweight is due to growing up poor; my brain and my body equate restricting my food intake and choices with being destitute, which in turn is a trigger for depression. It isn’t logical and I’m okay with that. Also, being a fat kid, there aren’t many diets I haven’t tried, and each one of them came with their own stories about how great it was and how it was going to change my life. I should be clear here and state that I am not undergoing this treatment to lose weight, although we expect that will happen of its own accord. I am doing this because many people with undiagnosed pain conditions, as well as people with CFIDS, Fibromyalgia, Multiple Sclerosis, and other maladies that have been posited to me, have found some relief of symptoms from eating a gluten-free diet, and because this friend was incredibly compelling in her attempts to convince me to try this. I should also add that the thrust of this undertaking isn’t just being gluten-free; I don’t know the whole plan but I do know that it has some basis in the Paleo diet camp. Lots of meat and veggies, no gluten, “good” carbs, with a little wiggle room here and there as needed. I know that a point she felt strongly about included, “No ‘gluten-free substitutes’, either.”

I don’t have a set start date for this undertaking, as she’s still working on the plan and I assume there will be some discussion and education before it begins. Ninja has already stated that he is happily opting out of going on this journey with me, which may make things exponentially more difficult, but I don’t blame him either. I’ll let you know when it starts, and may give some updates about how its going; I’ll definitely let you know what I decide after three months.

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Power of the Poppy: A Book Review

January 12, 2012 at 11:30 am (Chronic Pain, Uncategorized) (, , , , , )

Since I mentioned “Power of the Poppy” in my post, “Mistress Poppy“, and also because I love Kenaz Filan’s work, I decided to post my thoughts on this interesting tome dedicated to the awesome power, and incredibly real danger, of P. Somniferum, otherwise knows as the Poppy plant.

I was both impressed and disappointed at the same time, if that’s possible.

I found hir amount of historical and medical research on the uses of opium and it’s extracts entertaining and informative, if a little dry at points. It’s a big topic to cover, as P. somniferum is used to make everything from heroin to Vicodin, from opium to codeine. There’s a lot of history, from almost prehistoric medicine men to modern day addiction, but Kenaz finds a way to weave it altogether in a solid narrative. I feel like I know more about opiates than my pain management doctor does, at least anthropologically speaking.

It’s not easy to write a book about one of the most powerful addicting substances in the world from a harm reduction viewpoint – that is, Kenaz never endorses or condemns the use of various opiates – instead, zie clearly attempts to state both the wonderful effects of the drug, and the legal and physical consequences from it’s possession and use. I mean, I assume the author of such a book would have to understand that most of the people attracted to it’s subject matter are either already using some form of opiates already, or are keenly interested to try. So instead of preaching pure abstinence and overemphasizing the legal restrictions on it’s use, zie addresses those issues with enough emphasis to make it clear that there are risks involved, without judgement on those who decide to walk that path. Zie even addresses the needle issue by stating that clean needles are the best bet, but if you must resort to a used needle, zie gives you ways to reduce (not eliminate) the risk of HIV and Hepatitis transmission.

I mentioned to Ninja, as I was reading the book, that I learned more about the drugs I take (oxycodone, and OxyContin) from this book than I did from the doctor who prescribed it to me. I would advise persons on long-term opiate therapy to read this book; although at times Kenaz writes from the assumption/attitude that everyone who uses opiates is doing so illegally or purely for entertainment purposes, zie does share valuable information about the various forms of legally prescribed opiates, both their history and their current use. I specifically appreciated the part where zie made a clear distinction between addiction and physical dependance, something that most laymen miss. (Addicts continue to use, even when there are dire life consequences ; people with a physical dependance have bodies that have adapted to the presence of the opiate and therefore need it for both continued well-being and to stave off withdrawal, but once they stop using it, they don’t fixate on it’s use.)

I created an experience around reading this book that I would recommend to others. There is a section called Acolytes, that details the life and times of several famous opiate users. Most of them were entertainers or artists of some sort, and so I would stop for a moment, search the Internet for media related to the person, and integrate that into my experience of the book. For the musicians, like Charlie Parker and Layne Stanely, I played their music in the background while I read their chapters. I watched the movie “Man with the Golden Arm”, which was heavily referenced in Nelson Algren’s chapter, as well as “Long Day’s Journey Into Night” during the O’Neill chapter. It would be neat if there was a website that collected these resources as an addendum to the book. (I found the majority of these things available on YouTube.)

Where my disappointment came in, was that as a fellow spirit worker, I had really hoped there would have been more spiritual information about the spirit ally of Poppy. It gets a passing mention now and again, but there isn’t even a chapter dedicated to those who wish to work with Her in any sort of real sense. I know that Kenaz has worked with Her as a real Spirit Ally, and I would have loved to read a little bit about hir experiences in doing so. I’ll admit; I read the book looking for this part, and when it didn’t show up, I was let down a bit. I get that the book is likely more marketable without all that woo-woo shit, but this is Kenaz Filan, author of the Voodou Love Magic book. I don’t think hir fan base would have been disappointed with a little woo.

In addition, although I admit that zie did address the addictive qualities of these drugs, I felt that the descriptions of what it’s like to come off of them and the withdrawal involved was a bit tame. As someone who went from using 100mcg Fentanyl patches for 3 years who detoxed down to nothing in three months, I can attest that opiate withdrawal is a horrifying experience not to be minimized in any way. If I had known how bad it was going to be to come off of Fentanyl, I would have never agreed to its use. I feel like whether a person is thinking about the recreational or therapeutic use of these substances (including Methadone), you should be fully aware that kicking the habit is a terrible, body-wracking experience you will never forget.

Overall, it was an enjoyable read. I’d recommend it to people who work with sacred plants, those who are already involved with or interested in opiate use, those who are on long-term opiate therapy, and those who are generally interested in how medicines/drugs evolve over time. It’s a whole lot of book for someone who just wants to find out how to make poppy tea, although the instructions are in there.

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Nothing Is Ever As Easy As You Think

November 29, 2011 at 4:55 pm (Medical, Tuberculosis (Inactive)) (, , , , , )

A short medical update:

I came home from Thanksgiving Day weekend, having taught at Brimstone, an event up in NJ. I was feeling sort of run down and wonky, and then there were a multitude of situations at the hotel which challenged my  health – like rooms that were either boiling or freezing, including my hotel room.

Top that with my assigned roomie (a lover of mine, so I lucked out, but still assigned) was recovering from bronchitis, and my fate was sealed.

I started the TB med on Monday morning.

So I woke up this morning around 4, both sick as a dog and suffering from the same god damn symptoms as last time I tried the TB meds.

I tried treating the “sick as a dog” part on my own, but it quickly proved to be bigger than home remedies. I got in to see my PCP, and got my ID on the phone.

I’m taking antibiotics for the sick, and the TB meds have been stopped again. Hopefully I can nurse my way back to feeling normal from the interaction this time, rather than going to the ER.

I’d be angry and disappointed, if I didn’t feel so freaking sick.

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