Ten Hard Lessons I’ve Learned About Being Chronically Ill

February 5, 2014 at 1:14 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , )

I’ve been struggling with chronic pain and illness for over six years now. In that time, I’ve come to some difficult situations and choices, and for the most part had no source material to turn to. Being without a specific diagnosis means that there are less places to access wisdom by those who have gone before – I read some that share symptoms or challenges with my reality, but even those who have a name for what’s going on find that there are times when your only choice is to struggle through and make the best choices you can. Sometimes we choose wrong; we do something that makes things worse, or we choose a doctor who treats us poorly, or our behavior during times of stress alienates the very people who want to support you the most.

These lessons are by no means definitive, or the only lessons I’ve learned, but instead I’ve chosen these because in hindsight I really wish someone would have given me advice (or even a clue!) in hopes of avoiding some of the inherent pitfalls involved.

10. There is a difference between someone who wants to help you, and those who want to solve your problems.

The people who have been the most supportive in times of difficulty are the ones who chose to assist me specifically so I could do more for myself. The ones who end up burned out and resentful are the ones who chose to do things in hopes of either doing things for me, or doing things with the expectation that things will get better in some form of permanent fashion. I could continually ask people to scratch my back, or someone could buy me a backscratcher. (And here’s where I thank the anonymous person who did exactly that.) You could volunteer to take dictation when I can’t type, or you can help me find dictation software I like or suggest another way of sharing my thoughts (like a podcast). This lesson taught me not only how to tell what a person’s intentions are (to help or to solve), but how to phrase requests in very specific ways so even those who are inclined towards solving end up doing things that make us both feel good. If I know you’re a “solver”, instead of asking for something nebulous (like, “I need a way to move my legs more without causing pain”), I take a little more time and ask for something more specific (“I need one of those cycle bikes that rest on the floor and have a motor, here is a link to a few I like on Amazon.”)

If I’m unsure of what the specific need is, that’s when I turn to the helpers. Because they are focused on supporting my independence as much as they are focused on the challenge at hand, their brainstorming will naturally drive itself towards choices that give me more freedom and less reliance on others.

I’m not saying one is bad and the other is good; I’m saying that in order to lean on my support system without burning everyone out, having a general sense of how someone feels helpful can expand and strengthen your team. Just like you go to Joe when you want to gossip, and choose to go shopping with Pat because they have a style sense that matches your own; knowing who is best qualified to get your through a hurdle makes it easier to ask and receive with the least amount of guilt. Which leads me to…

9. People generally want to help as much as they can; those that won’t or can’t will make themselves known.

It seemed somewhat obvious to list “Asking for help is hard”, because you don’t need to be chronically ill to know that. What I’ve learned about opening myself up to receive help when I need it is that sometimes the “obvious” choice isn’t the right one. One of my people who drive me to doctor’s appointments comes from 3 hours away to do so, usually coming in the night before and leaving that evening. They’ve done this even when my appointment is less than 20 minutes from my house. I have tons of friends who live closer, but many of them have legitimate reasons why they can’t help out. Before I figured this out, I would totally freak out when I thought I knew the absolute “right” person for the job, only to have them decline or just not respond to my requests for help.

Another facet of this lesson is that although it can be downright frightening to be honest about something you need – especially if it requires large amounts of resources like time, money, or commitment – it’s better to be forthright. Even if someone can’t solve the whole problem, they may be able to help you by breaking the ask down to smaller chunks and delegating it to a larger pool of people. It might be difficult for someone to drive to my house, then drive to a doctor’s appointment two hours away, take me home, and then go back to their house. Instead, maybe one person picks you up and drops you off; another gets you at the docs and takes you halfway home, where someone who normally makes that commute can take you the rest of the way. Or if you need to clean house because you’re having a party, instead of asking one person to come the day before and help you out, you can throw a “pre-party meet-and-clean” so your shy friends can both do something helpful and get to know a smaller group of people before the throngs show up.

Before I learned that, though, I would frequently ask not for what I needed, but for what I thought people wouldn’t be offended by when I asked. I had to learn the very hard way that although it might be easier to ask for someone to drop me off somewhere and I’ll just use my walker to get around; if I wake up that morning and my arms aren’t up to the walker, I’m totally screwed unless my friend is physically able to deal with the wheelchair and has the time to stick around for my whole appointment. Or if I needed money to cover some over-the-counter medical stuff, I would sit and agonize over what I “really needed” and what I could “live without” or “make due”. Usually, someone would find out that I was using duct tape to hold bandages on or stealing alcohol wipes from the doctor’s office. They’d sit me down and remind me that people generally want to help, because knowing that their friend is in a bad way makes them feel helpless. Giving them the opportunity to make a difference makes them feel like they’re really doing something.

I also had to learn that there are people who will tell you many times that you can call them anytime if you need anything, but they are only being polite. In fact, I think one of the reasons that chronically ill people usually dismiss vague offers of help like these is because we’ve learned that there’s a good chance they won’t come through. Not necessarily because they don’t care or don’t want to (although there are people who don’t), but because they don’t have the resources or ability to help in the ways you need. You just get to a point where you know asking is a waste of time, even if you think they might be a good choice for one reason or another.

8. If your friend has stopped inviting you to fun group things, it is sometimes okay to check in and ask why.

If you’re wracking your brain to remember what you might have done to offend someone, because all of a sudden you’re no longer “on the list”, it could very well be because you weren’t able to attend enough other events because you didn’t feel well. Or maybe because the place where the party is a fourth-floor walkup. Or maybe because they know you don’t drink and so inviting you to the bar seems mean. And honestly, sometimes they’re worried about reminding you about all the cool stuff your friends are doing that you can’t participate in anymore.

I tend to tell people that these days, I see an invite as a way of saying, “We want you to know you are wanted”. Even if it’s obvious that I can’t participate, just knowing that when they were thinking of the top 25 people they want to go skydiving with, you’re number 23. Sometimes, I use the opportunity to see if some sort of adaptation can be made so I’m included – my friend has an upcoming birthday bash, but her apartment is up several flights of stairs; I asked her if maybe a day-after brunch could happen in a wheelie-friendly restaurant. Done! Other times, people are being too cautious about what I can and can’t do; I might have to bring a chair and take lots of breaks, but I am able to go to the bonfire in the woods given enough time.

7. If you’re feeling left out of fun things, make fun things happen in places and ways you can handle.

There are lots of times when I’ve been home on a weekend night, mooning over all the cool things people on Facebook are claiming to do that I can’t for one reason or another. And it’s not always about health/ability; I might not have the money, or couldn’t find a ride, or required me to RSVP too far in advance. Honestly, it didn’t occur to me right away that the answer was to take charge and plan fun things that were tailored to my needs. Now that I live in a completely-accessible place (thank the Gods!), I have been hosting more stuff. Not only do I know the place is accessible, but if I need a quick breather or if I get a bout of nausea/vertigo/pain/etc, I can duck into my room for a little bit and let my guests entertain themselves. And if I need to check out of the festivities completely, it doesn’t mean everyone has to leave. I just elect someone to take over hosting duties and disappear into the Del Cave.

And if the fun things that I want to do are location specific (like going to the Drive In), I can do my homework to make sure the place is accessible. I can also set up somewhere to be the Temporary Del Cave, whether it be in the car, in a friend’s spare room, or even the handicap stall. I tend not to carpool, so if I need to check out early no one else is inconvenienced (except whomever’s driving). If food is going to be part of the fun, I can call ahead to see if the food on premises is Del-safe; if not, I can usually find a small thing to pick at and bring food to eat on the way home. Even if I am worried that I will have to cancel last minute, I can make sure that people are as invested in doing the fun thing as much as seeing Del at the fun thing, so if I have to back out I know people are still having fun.

Even when I’m at my sickest, I’ve still entertained guests. I just make sure they’re informed up front that I’m not doing well and they should bring things to entertain themselves, or maybe even make plans to go be a tourist or go shopping at the Outlet Mall, so I don’t feel like they’re sitting outside my bedroom door breathlessly waiting for me to feel social again. That way, we both get to spend some time together, and no one feels mislead or guilty if I need a nap. It doesn’t hurt that we have wi fi and an off-brand Roku device, as well as tons of odd books to read. The town we live in has a few cool things to do, and we’re pretty close to places like Gettysburg and Baltimore if you really want to get your tourist on.

6. Needing a lot of down time, alone, can be spiritually enriching.

At first, any time I had bodily-enforced down time, my gut reaction was distraction. What book can I read, what show can I watch, what silly online game can I get lost in? Those are still good stand-by distractions, but when I’m experiencing more down time than up time, it can feel like I’m wasting my life. It only emphasizes all the things I wish I could be doing, or things I expected myself to be doing at this age that have been replaced with this stupid reality I did not want nor asked for. I start slipping down that greased slope towards the maw of depression. Depression brings it’s own symptoms and challenges, and it complicates your health situation that way. I struggled a lot with depression last year, but what became the rope ladder that got me going in the right direction was finding purpose in my rest. I re-started my meditative practice. I found some great online videos of seated yoga, wherein the guide repeatedly tells you that if a pose or stretch is painful, to just breathe and wait for the next one. I began sitting in front of my altars and just letting my mind wander. I began writing for the sake of writing, instead of feeling pressured to cater every word towards a goal – a new post, a new class, a new ritual, etc. I started a personal diary.

The more I found the usefulness in stillness, the more I began to see bodily-enforced down time as something to look forward to. It let me choose to slow down, even if I didn’t have to, which helps keep me from overdoing it. Even if I’m away from home, being able to find a quiet place to sit by myself and just listen to the nature around me can help me enough so I don’t have to run home at the first sign of discomfort.

It also helped me clear out some cobwebs in my Godphone pipeline. Whodathunk it was easier to hear the Gods when you weren’t constantly doing things or thinking things? It also gave me the joy of feeling the presence of my Gods when I didn’t need them; to be able to sit and commune with them without any goal or purpose other than to be. It fills my heart with joy when I have the distinct pleasure of sharing my life with my Gods, even when all I can do is lay in bed and open myself to them. It has definitely strengthened my bond with Hel, who quite enjoys my company and a cup of tea from time to time.

Just finding ways that make stillness productive in its own way, while still being relaxing and stressless, makes me appreciate that my body reminds me to do it from time to time.

5. Be honest, with yourself and with others, about how much time you can spend with them, and how you want to spend that time.

Maybe I’m in the minority, but I would rather have one incredibly long and windy phone call a month than seventy billion text messages a day. Not only do I know it is very likely I can find an hour to commit to said phone call, but it just feeds me better. I see text messages as a tool of necessity – I’ll be there in 20 minutes, Do you know BobJo’s phone number, Are you free for a phone call tomorrow, that sort of thing. This is also why I am rarely signed on to any online chat service. It feels too demanding – answer now or I will ask you sixty times if you’re still there!

It also means that if I’ve just spent a whole weekend with you in person, I can guarantee that I will spend the next week in lots of down time. I value in person time quite a bit, but I’m also content if it only happens once or twice a year. I understand that we all have busier lives now, and the convenience of immediate communication in McNugget sized bites is undeniable, but it just doesn’t feel right for me. I know this paints me as a luddite, and I don’t care. I care so much more about the quality of the time we spend together, doing things that we will remember and that matter to us, than trying to live up to demands of being always accessible and immediately responsive to all of the people who matter to me, all of the time. I am one of a few people I know who not only shuts off my phone from time to time, but I also leave it at home! Aghast, I know! (It may sound a bit crass, but now that both of my parents are dead, I no longer worry about there being an emergency I need to know about right away. I figure there’s nothing I can do about an emergency that can’t be done when I turn my phone back on, or check my email, etc.)

I know that I’ve been shit about answering email, but I’m making a real effort to get better about that. It’s not going to happen overnight, though. I get a lot of email, and the majority of it is the kind that implies a timely and personal response. I am also working on organizing my inbox so messages don’t fade into the abyss that is “the next page”, buried under reminders that Barnes and Noble is having a sale this week. I decided to focus on email because I enjoy exchanging written words with people; and email no longer comes with the expectation of an immediate response (unless it says so). I find that even if someone assumes everyone answers email in 24 hours or less, as long as I send them a thoughtful response that shows I took my time to think about what I wanted to say, I’m usually forgiven.

The point I’m trying to make here, though, is that no one has the right to dictate how you spend your time but you. Obviously, some kinds of relationships will want more time than others, but even then I consider quality over quantity.

4. “Go to the doctors” is not a solution of any sort.

Often, when I write about my symptoms, especially when I am worried about what they might mean, people tell me to see a doctor. On the outside, it makes sense. But the part that makes me want to pull my hair out is when people expect that a single doctor’s visit will somehow provide anything resembling answers. No matter how much information you bring with you, no matter if you write down your symptoms and questions beforehand, no matter if you’re self-educated about your condition or what tests might be necessary to figure out what’s going on, doctor’s appointments are rarely about answers. It only seems to apply if you’ve been seeing a doctor on a regular basis, have limited discussions to a certain subset of your symptoms, and have undergone tests and studies and what have you; then, maybe there might be some sort of resolution like surgery or treatment. 90% of my doctor’s appointments go exactly the same way; I come prepared to discuss my symptoms (including how they are limiting my ability to live life), and the doctor orders tests. The tests come back, and if I win the doctor lottery the first round of tests *might* show something treatable. Most of the time, it’s the beginning of a long road, where you are referred to several specialists, who all start from ground zero (because they don’t rely on prior doctor’s thoughts or opinions).

One of the biggest issues I’ve faced with the “go to the doctors” conundrum is along the way, someone will find an actual problem. In fact, I’m willing to bet that the more doctors you see, the higher the likelyhood that they will find something. This sounds like a positive thing, and in a way it is. It was good to know I had a giant abscess in my abdomen that needed to be removed. But it also meant that for the next ten months, it was the only thing I saw doctors for. Time and money being limited, it meant that I failed to follow up on tests from my neurologist, endocrinologist, and all the other specialists that weren’t related to the abscess. When I finally have the time to go back to these other specialists, I am always chastised for the lapse. Some tell me that I’m obviously not serious about finding treatment, and tell me to see another doctor.

On top of all of that, when I’m brutually honest with a doctor about the time issues involved, they act like they should be my only focus. I had been cleared for an uterine ablation three years ago (and I really need one), but the problem has always been that I have to schedule it four or more months in advance. By the time the surgery rolls around, I’m almost always in the hospital or about to be, for something completely unrelated. I have cancelled four ablation appointments so far. When I tell my OBGYN that the only way this will happen is if I can get it sooner, they act like I am asking for VIP treatment.

Another example: I saw a new neurologist last week, and I’m pretty excited about working with him. But I told him up front that I’m in a time where I can chase tests and make appointments and such, but that time is finite. I already know I have a new abscess growing in my abdomen, and there are a few other medical situations that are getting more serious. I explained to him one of the reasons I haven’t been able to get a diagnosis is because the doctor takes too much time to order and review tests and by then I have something more urgent to attend to. So what did he do? Schedule a test for a month from now, and a follow up two months from now. As I’m seeing my PCP this week about some stuff I am pretty sure will be determined to be more urgent, I might as well not bother.

Even with excellent insurance, there is a financial cost to all of this test chasing and multiple appointments too. I have to have money for gas, parking, and sometimes have to pay my driver. I frequently have to pay a fee so I can get copies of the results for other doctors (although this has gotten better since concentrating most of my specialists and my PCP through Johns Hopkins, since they have an electronic patient folder system where they can see what everyone else is doing). There are other kinds of costs, too, like spoons. I am worth absolutely nothing on a day when I have a doctor’s appointment, and doubly so if there some sort of test. Although Rave helps me a lot, I still spend time making the appointments, finding someone to take me, figuring out what I need to bring, if I need to fast or not eat certain foods, knowing and bringing what I need for comfort, etc. And none of that even covers the times I do all of this only to find out I can’t be seen, or if the machine won’t accomodate me, or if there’s no point to the appointment because the doctor hasn’t received the results yet. It’s ridiculous.

So yeah, when someone suggests I “go see the doctor”? I just laugh quietly to myself.

3. You are the only arbiter of what you put in your body/what you do with your body, and you don’t have to answer to anyone about it.

I can’t even begin to tell you how much shit I’ve been given about choosing to take opiates for pain management. Or about taking antidepressants (even though I take the kind I do because it also helps with nerve pain). Or about not eating healthy food every single minute of every day. Or about having an alcoholic drink (a single one) once every six months or so. Or about which supplements/vitamins/homeopathic remedies I should or should not be taking. Or people sending me articles about new medicines or treatments with the expectation that I will immediately talk to my doctor about it. And as those who have read the rules of this blog already know, I get tons and tons of people recommending alternative therapies, from yoga to acupuncture or reiki to magnets.

It can be difficult, because most of these people are legitimately concerned about your health and well being. They’re not trying to be obnoxious or naive. It is something they can do that makes them feel helpful. And oftentimes, they actually do know someone personally who has benefited from these choices in some way.

My decision has always been about quality of life over quantity of life. When I found myself breaking down into tears because the restrictive diet I agreed to try denied me the pleasure of having ice cream when I wanted it, (and this may sound juvenile but it is absolutely true) that I didn’t want to live if it meant I couldn’t gain what little comfort I can. I have been weaned off of opiates, and my quality of life went to zero (and doctors made the decision to put me back on, and chided me for agreeing to go off in the first place). I’ve tried to be open minded about alternative therapies, but especially now that I’m on a fixed income, I don’t have a ton of money I can invest in something that only has a small chance of making a difference. I can’t afford to shop in exclusive, trendy supermarkets in order to stick to a nutrition plan, especially if I don’t like what I do get to eat.

I make choices that don’t take my health into consideration. Everyone does. Whether it’s opting to forgo an exercise regimen, or getting tattoos when it may increase your chance of infection, or eating something knowing full well your body will hate you for it tomorrow,  or skipping a meal every day in order to fit into that killer dress this weekend, it’s not hard to find examples of people making personal choices about how they treat their bodies that we might not agree with. Just because I am chronically ill does not mean I surrender the same right. I have to pay the same piper everyone else does. A life that is devoid of pleasure, comfort, and the occasional indulgence is practically inhumane, in my honest opinion.

3. If all you talk/write about is being sick, then the only thing people will know about you is that you’re sick.

Being chronically ill or in chronic pain is a very lonely thing. It is full of complex emotions and challenging moments that one really needs social support to endure. It can be liberating to express your inner dialog – your fears, your frustrations, your sadness, your oddly funny moments – so people might better understand what it’s like. It can help when your words encourage others to share similar stories, or even just leave a “I feel that way too” comment on something you wrote in a moment of despair. I would never, ever discourage someone from finding ways to communicate their struggle that ultimately help them face their illness with more resolve.

But before I started my second blog, most of my friends and acquaintances used this blog as their sole source for keeping in touch with me. As I consider this a blog – a place where I have a general topic and all of my writing ties into that topic in some way – everything I shared related in some way to either my personal experiences being chronically ill, or my insights about chronic illness and spirituality and the intersection thereof. However, many of those friends thought this was more like a journal – an accounting of my day to day life experiences – they began to think that I was consumed by illness and did nothing but go to doctor’s appointments and sit at home in pain. They didn’t call or write or visit because they were afraid to impose themselves, what with me being sick and all. I even had some professional issues because of this blog, where people refused to hire me or offered me smaller contracts so as to not overtax me. I realized that the blog had become a real issue, and I had to do something to remind people that I am still a dynamic, passionate, and lively person who has a lot of life to live yet. One of the solutions was to start Sex, Gods, and Rock Starsand take some time to promote it and build a following of folks who were only reading this blog because it was my sole expression online. It has been a real challenge, as making sure I am writing enough to keep both projects worthwhile (and to fulfill the Purposes for both – including my spiritual agreements about them). Sometimes I write more here, and sometimes there, and sometimes neither site gets updated for a while. But in the end, it has helped tremendously in creating a more realistic image of who I am as a well rounded and vital person who happens to also have chronic pain/disabilities.

2. It takes time to accept that the likely hood of “getting better” is not that great; not only do you need to accept it, but those closest to you need to, too.

Obviously, this is not applicable to every chronically ill person in the whole world; you may have relapsing-remitting MS where there will be periods of time where you feel pretty healthy. Or in a year from now, scientists will make a big discovery about your illness and there may be better treatments or even a cure. It’s possible that after years of not knowing what was making you feel so poorly, the right doctor will stumble onto a diagnosis that has known treatments to alleviate your suffering.

But for me, I’ve radically accepted that I don’t know what tomorrow will bring. At the same time, I have no delusions that it will take one thing to completely treat my suffering and sickness. Even if I got a diagnosis, the chances of it being something curable are pretty slim at this point – I’ve been tested for most of that stuff already. When those closest to me string their hopes on a someday cure, it makes me feel like they are not only ignoring the present but that they aren’t paying real attention to my journey thus far. There’s optimism, and there’s self-delusion. I’m optimistic that someday doctors will know why I feel sick/pain that may lead to more targeted treatments, but I also accept that if that happens some of those treatments are things I’m already doing (like pain management) and others will almost definitely take time before they work. I mean, knowing you have cancer doesn’t mean that in a week you’ll be completely cured.

I need people who can dig in and see the reality of today alongside me. I can really only deal with this in small chunks – maybe not quite “one day at a time”, but close – and if all you want to talk about is some nebulous future, I can’t relate to that at all. Deep inside of that optimism, too, there are crunchy bits of judgement (if you only took this more seriously, you’d already have a diagnosis/treatment) and denial (it’s not possible to have these symptoms and there be no singular cause). I have lost important people in my life because they failed to accept the reality of what is, rather than keep their eyes shut tight, hoping for the pipe dream of tomorrow.

It also subtly communicates that the lack of a panacea is my fault – I’m not choosing the right doctors, getting the right tests, chasing the right diagnoses, talking about the right symptoms, etc.

One of the relationships I had to end because of this kind of thinking was my therapist. I sought him out to be someone I could work through my feelings about my medical situation with, but by the fifth session he was so frustrated that my doctors had failed to diagnose my “obvious case of MS” that I had to ask him to stop yelling. The next few sessions comprised of me gently encouraging him to be patient with the process, and when I finally realized I had become his therapist, I ended the relationship.

1. Do whatever you have to do to survive. 

I mean this literally and figuratively. Even if you hate taking daily medication (or in my case, testing my blood sugar four times a day), if it makes your life an easier place to live, it’s worth it. If you are starting to hate or mistrust your doctor, get a new one. Ending relationships that only complicate your life and cause you more stress and pain may be difficult, but if it will eventually make it easier to get through the day, do it. Taking a break from seeing doctors because you need to save the money you usually use for co-pays in order to pay rent/buy food/pay bills can be a legitimate decision. Telling your doctor that a medication is on your insurance’s third tier (the most expensive one) and that you need a less expensive option is completely understandable. Finding plans or cards from pharmaceutical companies that will net you discounts on your meds might make your doctor sigh because OMG paperwork, but ignore their huffing and bring it anyway. Asking your friends to remind you of cool memories so you can read them when you’re in despair is not selfish or self-centered. Saying “no” to a doctor is always an option. So is “I want a second (or third, fourth, fifth) opinion”. Refusing to settle for a physician’s assistant and wanting to see the MD in your doc’s office makes sense if you’re medically complicated. Late night trips to the ER because you are in excruciating pain, or having a symptom that is scaring you (like chest pains or not being able to take a full breath) are not wasteful.

Don’t let anyone ever make you feel bad for making the best choices you could, given your resources and knowledge. 

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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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What about it?

February 18, 2013 at 4:03 pm (Chronic Pain, Disability, Living With Chronic Illness) (, , , , , , , , , , , , , , , )

“What about Dying for a Diagnosis?” Winter asks, in that way good friends, or sometimes shamans, ask someone about something they’ve been overlooking for longer than they should have.

“I know, I know…I just don’t know what to say. ‘Things are going the way you’d expect’ doesn’t make for an interesting blog post,” I reply.

I’ve made several fairly popular and viral posts over at Sex, Gods, and Rock Stars lately, and have three or four posts sitting in my word processing program, unfinished. (I tend to jot down ideas as they come to me and then develop them in small segments until I reach a stride in my writing and finish a post. Sometimes, either possessed with a strong opinion or a timely matter, I will conceive and write an entire essay on the same day, but most of the time I work in starts and stops as spoons allow.) But none of them are for here; and there are more reasons than merely not having anything earth-shattering to say about my current roost in my medical journey.

And it’s not untrue: things have slowed down incredibly since the surgery. I assume weekly posts that entail mostly of “I’m still healing, still dealing with post-op pain, and the doctor visits have been pretty routine.” Other than one of the surgical drains developing a crack and having to be removed at home (by me, not knowing that there was a significant amount of tubing inside my body – I just knew that the drain was no longer holding suction (which is how it works) and the stitch had blown, so it was going to fall out eventually anyway) and a bit of swelling around the center of my scar that I plan on having checked out by the surgeon’s office sometime in the next week or two, there hasn’t been a lot of dramatic action in our hero’s story.

It’s also not entirely true, either. My chronic pain has shot through the roof, with more days finding me in bed doing the bare minimum I need to get through the day than days where I spontaneously decide to do something like catch a movie or go out on an errand. I was also doing something I call “spoon banking”, where when I have a commitment coming up that will require much more energy than normal, I will spend the week(s) leading up to it getting extra rest and being judicious about what I really need to do, in the theory that if I don’t use the energy now on less important things, I will have (a little?) extra when the time comes. I attended my first teaching gig/event in six months this past weekend, and I think that the practice paid off, as it really wasn’t until Sunday evening when I started “feeling it”.

It was good to get out like that. Not just because it was an important personal step in healing from the separation, but because too much introversion makes Dels depressed, and depression comes with its own tangible consequences in levels of pain, sleep disturbances, and mental health symptoms that only muddy the waters in terms of figuring out what the heck is wrong with me. It wasn’t easy, as it was one of those events where I felt like I was running from one thing to another, rather than leisurely enjoying my first large-scale test of my constitution by giving myself liberal amounts of rest between commitments. It’s a side-effect of being one of the programming director’s right hand men as well as his roommate; should something come up where he needed someone with skills I possessed to fill in, it’s hard not to turn to your lovers and say, “Um, hun, is there any way you could…” Of course, this is not how Winter tends to ask me to do stuff: it’s more like, “Dammit! I still can’t find someone to invoke Water or Fire at opening ritual! And it’s in two hours! What am I going to do?” And like most decent people, if there’s anything I can do to ease his stress and make him feel good, I’ll do it. So my “workload” at the event shimmied up from teaching two classes, to three, to also helping produce a ritual, to being in a second ritual, to judging a contest, to helping him find other people to fill in where I couldn’t, and so on.

But this entry is not about that. It’s about my avoiding this blog, and knowing damn well that Baphy only let me start Sex, Gods, and Rock Stars if I promised not to forget that this was my first and most important commitment. It doesn’t help that I was offered a book deal last week, a collection of some of my more spiritual blog entries, and when I submitted links from both SGRS and Dying for a Diagnosis, most of the DfaD essays were relegated to the category of “Cool Things Del Has Written”, which was to say “Not Really Meant for This Book”. Now, I’ll say that the publisher has offered me a few options, including providing formatting services should I want to put out a collection of blog entries that fit this category (but not carrying it under their watermark), and I find myself once again feeling like I may be neglecting this blog, not just in the writing sense, but also in the sense of it being considered part of my voice on the Internet (and beyond, when/if the book(s) come to manifest.

It’s also true that when I was praying about whether or not I should (or could) start the second blog, I bargained that whereas reading about my frustrations with the health care machine and/or my funeral arrangements and/or the spiritual revelations being chronically ill has given me weren’t exactly going to get me international stardom (or many blog subscribers – I had always assumed that the majority of DfaD’s readership was made up of people who already knew me, plus a smattering of other spiritual folk suffering from chronic conditions who found solace in what I had to say on the subject), SGRS was much more in my personal wheelhouse. I already have a reputation and/or following from my vocation as a kink and spirituality educator, as well as a shaman and spirit worker, and the bargain included the idea that once people found SGRS, they might wander over here to see what else I was writing. And sometimes that’s true; but I definitely have twice as many subscribers on SGRS than here. When a new post goes live here, I get something like 150 people clicking links on social media to see what’s up; on SGRS, it’s almost double that.

It’s not surprising; there are many more people interested in, well, sex, Gods, and rock stars than they are about death and dying. This blog is much more personal, and so it may not be of interest to those who don’t know me personally. But it doesn’t help when I use my essay-writing spoons on developing things for SGRS and only waiting until something major (good or bad) happens in my life to blurt out something on DfaD. I could very well be doing more research, thinking, and praying about the spirituality of illness, pain, death, and dying; which would, in turn, inspire me to write more essays here that aren’t so reliant on knowing the particulars of my medical situation or my history with terrible surgeons/lazy doctors/pain management techniques/etc. In fact, I felt bad when I saw that a small handful of people, upon seeing that I had a new blog with much snazzier and less agonizing essays on it, unsubscribed from reading this one in favor of the other. I’ve also seen a decline in how many people bother to click on a social media link to read what’s here, whereas more of them are inspired to give me a few moments of their Internet browsing time when I’m writing about spirit work or devotional practices.

It doesn’t erase the fact that I still don’t have a diagnosis, after almost eight years of suffering. That one of my primary spiritual identities is that of the Dying Man, the person who speaks for those who are much more aware of the limited time we have on this planet, and the messages we desperately wish those who patently ignore this impending deadline (ha! pun!) would pay attention to. I’ve had “The Five Top Regrets of the Dying” essay a friend emailed to me sitting in my bookmarks for probably a month now, meaning to write something about it for DfaD, but instead I’ve been spoonbanking to go to a spiritual kink event and enjoying the blush of a book deal.

What it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave behind will only be linked to the fact that I’m chronically ill, when in fact I’m a much more multifaceted and vivacious person who just so happens to also be chronically ill. It lets me taste this feeling of being a rock star, even while I’m being pushed around in a wheelchair and sleeping rather than partying late into the night/early into the morning. It comforts me, and those around me, to know that all the information and experiences in my head will be passed on to the next generation, so they won’t find themselves having to rebuild a modern form of shamanism/ordeal mastery/spirit work/ritual creation/etc from the shreds of those who were too sick to take a moment and write it all down. One of my mentors and friends, Raven Kaldera, churns out book after book, not taking any time to promote one or the other for very long, because he too feels this need of getting all the information/experiences out there before his chronic illness takes him (or, since we both believe in the concept of being able to communicate after death, at least makes it harder for us to get the point across).

So here’s the skinny on what’s going on with me medically: I have noticed that I am losing weight at a scary rate again; not only the 40lb weight loss I had on Dec 28th, but more than that. And yes, I’ve gotten my handful of “you look great” compliments, and it’s hard to sift which ones mean “You look really good for someone who had major surgery a month ago” from those that are really saying “You look thinner, and thinner for you always means healthier, right?” I’m still wearing supportive garments over the surgical area, although now I do it more when I’m going to be super active or if my abdomen hurts, rather than every day. There’s a growing swelling around the center of my abdomen that is causing the scar to heal inverted (dipping inward rather than keloiding), and I’m going to see Dr. Sacks about that sometime very soon.

My chronic pain has been a devil to me, and my muscles have been locking up, misbehaving, or cramping painfully much more often than they did prior to surgery. My pain doctor was…I was going to say “less than thrilled”, but it was much more like “really pissed off”…at the drug combination I was given by Johns Hopkins (although I did mention that JH tried to contact his office many, many times, both to get his consult on what to give me, as well as to secure that it was okay to release me on that combo, to no avail). And it’s not helping as much as you’d think. I mean, it is helping with the surgical pain for the most part, but my chronic pain eclipses it. I’m very worried, because there are three tiers of pain management – think of it this way: there is “have some occasional Vicodin for when things get really bad, but mostly rely on NSAIDs to get through it”, there is “okay, here is some OxyContin, and have this other narcotic when things get really bad” (which is where I’m currently at), and then there’s “We need to start talking about permanent pain management options, like implants or lifelong narcotic plans”.  Basically, I’m at the place where if I get anything stronger to help with my pain, it will be considered going from tier 2 to tier 3, and there’s nothing above that. So if I accept going to tier 3 now, if things get worse as I age, or if I grow a tolerance to the tier 3 treatments, there’s nowhere else to turn but learning to accept a very painful reality. So there’s really nothing he can do to help manage it, except offer up lifestyle changes.

I am looking into getting a mobility scooter (y’know, rather than a Vespa) in hopes that by the summertime, where I do a lot of events at a local campground, I will be able to get around independently rather having to rely on golf carts to get around. (Renting a golf cart just for my own purposes is rather expensive, even just for a weekend, and hoping that one that is being used as the camp-wide “taxi” will get me around in a timely manner has been..less than optimal, as a teacher/presenter/busy person. There are also places a golf cart isn’t allowed to go, that I’m hoping I may be able to access on a personal scooter.) It will also mean that I won’t need someone to push me around unless wherever I’m going makes bringing a scooter with me impractical or impossible. This weekend really drove home how dependent I am when I’m using a manual wheelchair I can’t self-propel; twice I was trapped in my hotel room because the person I relied on to get me around was unable to do so. It wasn’t their fault – in one case, poor Rave had been running herself ragged and really just needed a nap, which was completely reasonable – but it is a somewhat terrifying feeling when you really want to go somewhere but you can’t do it because no one can help you. Having a scooter would make both the camping events easier, as well as the hotel ones, as the model I’m looking at is built to handle both. I just need to hope my insurance will cover it – which it probably will – and I can get it settled in time.

I’m also thinking about alternative forms of pain management, but it’s hard. I really feel that acupuncture didn’t help, and the therapist I was seeing is someone in whom I have full faith in their abilities. I’ve been told that sometimes you need to shop around to different “schools” of acupuncture (there are several different techniques), and maybe a different one would be more useful. I’d give my left arm to find a massage therapist, but as I’ve said earlier, current none will treat me because of the infection issues. (Which I still find incredible on a long-view basis – since all the ones I spoke to, I told I would just have to rely on amateurs who were willing to rub my muscles, and who wanted to learn better techniques so they could help, and they were fine with that, but they weren’t willing to work with me professionally – but I totally get it from a smaller-view, as it was a ‘cover your ass’ move on their part.) I’ve been working on learning some basic stretching exercises, and moving around a little bit each day with intent, in hopes that maybe something like chair-yoga or chi-gong might be useful in loosing up my spastic muscles. It’s just difficult because I’ve tried so many of these ideas before, in a variety of ways, and they’ve never done more than given me a few hours relief, if that.

Okay, I’m out of blogging spoons now. I’m half-slumped over and my hips hurt from sitting upright. But there, Winter and Baphy, I’ve written a Dying for a Diagnosis post. Now let’s just see if I can keep finding interesting things to say.

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Book Review: Dion Fortune’s Book of the Dead (Crossposted)

October 25, 2012 at 7:26 pm (Death and Dying, Living, Spiritual) (, , , , , , , , , )

I am crossposting this on both of my blogs, since the subject matter is germane to both of them in different ways; I have different subscribers on both blogs, so I wanted to make sure no one missed it.

Dion Fortune’s “Book of the Dead”
published by Weiser Books
Amazon link: Book of the Dead

This book, which is probably better called a “pamphlet” at it’s very short 77 pages, was originally published in 1930 under the title, “Though The Gates of Death”. It’s not usually listed among her works due to its brevity, but I was lucky enough to stumble upon it while searching for new books to read on my Nook. This version was originally published in 1995 by the occult group she founded near the end of her life, “The Society of Inner Light”.

You’ve maybe heard of her before, because she was a strong influence on authors and occultists who created the Pagan traditions and thea/ology that we take for granted today. Diana Paxton and Doreen Valiente both credit her writings as a go-to when they were beginning what we now call Wicca. She’s also written one of the best books ever on the subject of psychic self-defense, titled “Psychic Self-Defense”. That is a book I frequently make students read and digest.

She was very active in the burgeoning occult underworld in the 1920’s and 30’s. Interesting to me, she had a nervous breakdown and went into a psychiatric institution right before she began having psychic and other magical experiences (madness path, anyone?). She studied various occult systems, including Crowely’s Golden Dawn, the Freemasons, and the hottest parlor religion, Spiritualism – a form of Christianity that held strong beliefs about being able to contact and interact with spirits of the dead and astral travel. She was also a “lay psychotherapist” (not far from what I do, sometimes) who had taken classes on the roles of psychology and psychic phenomenon from the Theosophists. And if that isn’t cool enough, there is scuttlebutt that she was one of the occultists the British government employed during WWII.

Needless to say, I was thrilled to find an E book version of her Book of the Dead. Working with spirits of the dead, and traveling to various other planes of existence, is something Ms. Fortune was very well known for. I was eager to hear what her thoughts were on the process of dying, and what the living can do to assist the dying in their crossing over.

These are the two things that the book focuses on the most – what the body and soul go through when one begins to die/what the soul can expect upon severing itself from the body, and what the living can do to assist the dying in making a gentle transition from life to death.

The first place that felt like a slap in the face (there were a few) is that she very strongly felt that there was no way that “natural death” could occur before “three score and ten years” (70). She explicitly states that dying from disease was not a “natural death”, because it meant that you were less than vigilant with your body. I believe this, like some of the other things I strongly disagree with her on, is a product of her era. This was before cancer was really known or understood, and although there still lingers some attitudes that some cancers are the patient’s “fault” (lung cancer, I’m looking at you!), I think our society’s view on those who contract terminal illnesses has radically changed since the 1930’s.

She describes three stages that a soul goes through after the last breath is released. The first is the disentanglement from both the “clay body” (your physical form) and the “etheric double” (how you envision yourself when you’re not looking at your body, basically). This can be assisted by those present at this stage by attempting to connect telepathically with the dying and give them permission and encouragement to move on. Also, having a source of prana (energy) present is useful – thus, the tradition of lighting candles and spreading flowers for the dead. Otherwise, the dying may use the prana from someone present, which she says explains why loved ones who suddenly feel tired shortly after the last breath have no explanation for it. I don’t know if I buy that entirely, since I know there’s a release of stress and energy when you know someone you’ve been sitting with is finally dead, and that might be confused for “stolen prana”. But it can’t hurt to have a good source handy if you’re sitting vigil for someone.

The second phase she calls “Purgatory” (remember, she was still seeped in Christian framework, even though she was an occultist). Supposedly, the soul is shown visions of their unrealized or unsuccessful desires. She talks about Karma a lot in this section, but I wonder if she only uses this term because it was the one accessible. The soul either has to overcome its attachment to these desires and failures (and thus move on to become a Master on the Higher Planes) or be reincarnated in order to live out another life to learn how to overcome them. Interestingly, Fortune states that while souls are in this phase, which starts “a few months after death”, they are not contactable, and cannot hear the summons of their loved ones on earth.

The third phase, “Heaven World” depends on what the disposition of the soul is – it can either ascend and become a “higher being” – a soul that assists in God’s work, or works with other freshly dead souls, or some other purpose – or you prepare to be reborn into a new incarnation. There is a time between phase 2 and 3 where a soul may be communicated with again, but Fortune warns that if you continually contact a soul in this phase, or bring them to mind/heart on a regular basis (like on their birthday, or an anniversary), you may be inadvertently keeping them from moving forward. If the departed does not feel like their old life is sorted, and their loved ones can move on and live their own lives apart from them, they cannot either ascend or be reincarnated. This meshes with some of my experiences working with dead who have been trapped due to similar circumstances.

I found many of her insights incredibly interesting, especially her thoughts that those who are psychically or magically aware have a much different death experience from those who are unused to fairing forth from their earthly bodies. She gives very veiled references on some exercises one can do to make that transition easier, and to retain consciousness during these processes. She attributes that most people cannot remember past lives, or what the after life is like, because their souls were “asleep” during them, and they attribute the experiences to a dream. She points to those who have a good handle on who they were in past lives as being more magically gifted in one way or another, because they are closer to becoming “masters”.

However, there was some stuff in there that I just found wacknutty. As I posted on Facebook, she states forthrightly that if a soul is severed from their body traumatically, like in a car accident, that soul will find itself inside the body of a baby about to be born. She claims that it is old midwives wisdom that if a baby is born with “old eyes”, it will die prematurely. Yes, she says that the traumatically severed soul jumps into a baby’s body so it can die properly, shortly after birth. I really wonder if she had a friend/friends who had lost children and were looking for some occult reason for it, and this was what Fortune came up with. Otherwise, it just seems too cruel, even for me.

I found this to be a really great read to get me in the mood for Samhain, which I will celebrate this weekend. It made me think very hard about what it must be like for a soul to leave a body and find out that it is more than the flesh, and gave me much to think about not just about where we go when we’re dead, but how we get there. It also gave me some incredible insights on things I can do should I find myself sitting vigil next to someone who is terminal. Some of it is definitely a product of the era it was written in, and there’s a lot of Christianity to translate to your own belief system, but the translation isn’t that hard. (She might have even been using it because it made it easier to publish in that time.) I suggest giving it a read, and it’s super short (77 pages). If you are a Nook user and wish to borrow my copy, complete with my own notes and thoughts, drop me an email and I’d be happy to lend it out.

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Getting Back on Track

July 19, 2012 at 2:50 pm (Chronic Pain, Living With Chronic Illness, Medical) (, , , , )

This is for those who read just for the “what the heck is up with Del’s medical shite these days” posts.

For a while, I’ve been way off track. When Ninja had those seizures in January, I kinda used it as an excuse (albeit a good one) to focus on him and his needs, and with that came me putting my medical journey on pause. Then I had the menstrual issues and was dealing with that when the emergency surgery came out of left field. The surgery took a while to fully heal, and by then I was in the busy season for my job.

I just want to let you know that things are slowly getting back on track. I am getting those manly-part surgeries scheduled, likely for late August. I got all my test scripts from the neurologist re-issued and I start those next week. I did go to the dermatologist and get that taken care of. I am going to make a GP appointment to talk about some of the post surgery stuff I’m worried about (I’m pretty damn sure I still have marked edema on one side of my belly, and my abdomen is rigid in places close to but not directly next to where the surgery took place, which worries me a little.), as well as get advice as to which kind of doctor to see about the marked increase pain, and decreased mobility, in my legs.

I’ve decided to try to get back to the paleo-esque diet, although I’m hoping to create two little loopholes to make life more enjoyable. After Jon died, I kinda slipped off the wagon in a slippery slope that lead to me eating Nutter Butters and Mac and Cheese – absolutely not on the plan at all. I also got very stomach-sick when I did, which scares me a little for if I decide to chuck it altogether. But I keep reading that lots of people with chronic pain find solace in this no-grain business, so I’m giving it another go.

I’m also highly considering both a deep tissue masseuse (one that I got a taste from at DO: Fusion and really enjoyed) and a chiropractor. I’ve tried the latter before, but the guy I saw mostly cracked my back, set me up on a tens unit for half an hour, and then tried to sell me crap. Anyone got an awesome chiropractor in the Germantown/Gaithersburg/Rockville/Frederick areas? I’m willing to travel to someone who gets results.

There’s your purely medical update for now.

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It’s a Pain, Being In Pain

March 16, 2012 at 4:30 pm (Chronic Pain, Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , )

This is likely going to be a bit ranty at times, so there’s your warning.
We all suffer

If you’ve been reading this blog for a while, you know that one of the biggest things I struggle with in my disability is that I suffer from a multitude of pains and after four years no one can give me a straight answer as to why. I have nerve pain and irritation, muscular pain and twitches, GI cramps and soreness, and don’t get me started on my uterus that I can’t seem to have removed even though I’m 37 and not interested in having children seeing as my spouse is infertile.

I am incredibly lucky that I was accepted into a pain management program. There are many people out there who suffer from intractable pain and have to beg to get the smallest amount of treatment, because regular doctors (and even some specialists) hate dealing with the rigamarole surrounding long term opiate therapy; there are a lot of potential risks on the doctor who prescribes that stuff. That’s how it all started for me; a few doctors would give me a handful of Vicodin or some other lower-level opiate and when I told them it really helped and made my life a little more livable, they’d freak out and tell me that it is only a temporary solution and they were done giving me any.

I was finally referred to a rheumotologist because one of the sillier neurologists I have seen decided that I had fibromyalgia and needed to get the heck out of his office. (He and I didn’t get along so well, can you tell?) She was a lovely rheumo, but we quickly discovered that I do not meet the diagnostic criteria for fibro, and I continually test negative for lupus (even though my mom has it, and there’s a (small) hereditary link and boy do my symptoms fit…), she was not willing to take me on as a patient. However, when I told her about the super amounts of pain I was in and how it was deeply affecting me (including a hospitalization that came, in part, from me taking waytoo many naproxium sodium – Alieve – in a day. You’re supposed to stop at 2. I was getting some effect from taking 8) that she was willing to write me a recommendation for the pain management program at a local hospital.

A Sign

It wasn't this easy to find.

When I arrived, I had received a little relief from my hospitalization in the form of 100mcg fentanyl patches. (Later, I was to learn, that some patients who are started on that high a dose die because it’s too much too fast.) That seemed to outline to the pain doc how serious my situation was. So he gave me some low dose Vicodin as a breakthrough med (to be taken when your pain spikes, but not every day) and we were off to the races.

For a while, things were great. The Fentanyl really helped make me functional, I didn’t have many side effects, but I did start taking the Vicodin on a more regular basis. This is when I learned one of the secrets of my pain doc:  if you’re still in pain, the answer is more pain meds. He upped the strength of my Vicodin, and then upped how many I took in a day, etc.

Then the weirdness with the Fentanyl began. I would get these incredibly odd sensations within a few hours of when I was supposed to change my patch. My pain would shoot up, and then I’d start needing to kick my legs or rock my body or shake my arms (all standard signs of withdrawal). I would get very nauseous and basically lose any focus I had. I’d be like that until about an hour after the new patch came online. Then it was four hours before. Then six. It kept getting more and more severe, until finally I called the doctor and was adamant that I needed to be seen ASAP because this was getting out of control.

It turned out that I have a intense sensitivity to the level of opiates in my system. Once we establish what “okay” is, as soon as I drop below that level, my body freaks out and does everything within its power to convince me to FIX IT NOW. My doctor kept telling me stories about patients who would only know their patch had detached when their pain got worse – several days later. I was going crazy if I was 15 minutes late. So we shortened the duration I wore the patch for, and that seemed to make everything okay.

Until I tested positive for TB.

One of the first things the ID doc wanted to talk about was my opiates. It seems that there’s a metabolite that the TB drugs use, that is also used by opiates. So when the TB drug shows up, it knocks all the opiates out of your system and takes over. They thought that the biggest risk was the Fentanyl; on a scale from A to D where A is A-Okay and D is Don’t Fucking Bother, Fentanyl was a D. But we tried it anyway and I ended up in the hospital. It really sucked.

So it was decided that I would wean myself off of the Fentanyl and move to oral meds. This took three excruciating months, most of which I don’t remember all that well. This ended about a week before I started Dying for a Diagnosis. I was still sick all the way into October, which is why the trip to Disney was a little strained. However, in the end it didn’t matter – we tried the TB meds again and I had the same reaction while taking oral meds that I did on the Fentanyl. :sigh:

Since then, I’ve been taking oral meds, but they’re not helping much. I suffer from dramatic roller-coaster like effects all day – I am forcibly awakened at 7am to take morning meds, regardless of if I went to bed at 11pm or 4a. I have to wait an hour before I can go back to sleep, waiting for the pain to recede and the withdrawal to calm down. Then, at 1:30p, my pain spikes and I start to lose focus. I’m like that until almost 3pm, when my afternoon meds take hold. This repeats at 7p, even though I take half my meds then and half when I go to sleep.

Yesterday, I went to my pain doc and laid it out for him: I’m miserable; the pain meds bring me, on the best day, to a 4 on the pain scale, and on most days I’m a 6; and this roller coaster makes it hard for me to live like a human being outside of my home. Even recently, I was at a movie when med o’clock crept up and I couldn’t sit still and relax until I took my meds. Sometimes I take them early, if I have to be functional at a time I’m usually not.

I asked him, “Please, is there any other options? Other drugs? Other treatments? Alternate dosing schedules? Something?” And I got the one answer I didn’t want – increase my drugs. I’m not terribly sure how this is going to solve the roller coaster issues, but I threw any and all ideas I had at him – spinal implants, electrical implants, different meds, different dosing schedules, different routes of intake (IV, etc), anything! And one by one he shot them down, not in a mean way, but that’s just not what he wants to do with me. The only light at the end of the tunnel is a drug that’s currently experiencing a shortage – Opana – which might help with some of my issues. But he sent me home to “research” it and if/when it comes out of shortage we can talk about doing a switch.

All this, so I can feel like a normal human being.

I hate that I need opiates, but I do. They do work for me. They do reduce my pain levels. Without them, my pain is almost always a 8 or higher. With them, although there are still times (like this week) where my pain is pretty bad, there are also times when I can get up and walk around and do things with little difficulty.

I hate the agreements I have to live under in order to receive these meds. This is a sample pain management contract that is similar, if not the same, as the one I am currently beholden to. When you read it, it all sounds reasonable, until you’re actually living your life and realize that it definitely has drawbacks.

1. I am randomly drug tested. Not only is my urine checked for illegal drugs, it’s also checked for levels of OTC meds, as well as the opiates I’m prescribed. If my opiate level is higher than it should be, they assume I’m receiving opiates from another source and I’m booted from the program. If it’s too low, I’m selling my drugs and goodbye. If my OTC levels are too high, I’m booted for not using them responsibly.

2. If I am booted (either for failing the piss test or for breaking another one of the sections) you are given a month’s worth of drugs and that’s it. So I am expected to detox off of years of opiate use on my own, with no medical supervision, and do it in 30 days. Remember, it took me over 3 months to wean myself down off of Fentanyl, and even then I was doing it “kinda fast”.

3. I can’t rack up any record of me being publicly drunk. Even though the contract addresses drunk driving specifically, I was instructed that any arrests that were alcohol related also meant I’d get the handshake of doom.

4. When things got really bad and I started taking a few more drugs than I was supposed to in a day, I was in violation of the contract. Luckily, this is not a bootable offense; instead, they just don’t make up for your shortfall. Even though I called them three times and told them I was feeling really terrible and the only thing I could do to feel closer to normal was to take more of those drugs, and they made me wait a week before they could see me, and by then things were out of control; I was still the one who got in trouble for “misusing” my medication.

5. If another doctor tries to give you narcotics, you have to instruct them that you’re in pain management and all narcotics have to be approved by your pain doc. So if I take X for maintenance, and then somethingeven more painful happens to me, my experience has been that once I tell them they have to call Dr. Pain to give me opiates, they just don’t bother and tell me to take Tylenol instead. (See above about abusing/taking too many OTC drugs.) The only exception is in the hospital; you’re allowed to get whatever the doctors give you, but you have to get a printout and bring it to your next pain appointment.

6. Doctors always encourage you to keep a small stash of pills in case of some emergency, like a blackout that lasts longer than a day or two, or if your pharmacy is out of your meds the day you need to refill. (You’re only given the exact amount of medication you need to get from Day 1 to Day Refill, no more.) However, because you’re given a very precise amount of meds, this means you have to skip doses and hoard away what you can.Except that it’s in the contract that you must turn over unused drugs. I got in trouble for holding onto some Vicodin when I was switched to Roxicodone; it was my plan to keep the Vicodin as a secret stash. But the doc figured it out and told me I had to turn it in. It’s pretty hard for me to skip a dose, so I never have a stash.

7. I know I mentioned this in six, but I’m reiterating so I can tell another story: You are given precisely enough drugs to get from Day of Refill to Day of Refill. The scripts have “Do Not Fill Before” dates on them. For me, this means I am usually completely out on Day of Refill. This is why you’ll frequently see me frantically looking for someone who can go to my pharmacy between 11 and 1; I take my drugs at 2 and if I’m out, I can’t wait until Ninja comes home to pick them up. This gets even trickier when Day of Refill happens when I’m out of town. I have to call ahead, explain the situation to the pharmacy, who then has to call and verify with my doc that I’m a real patient with a real script, and they also have to have whatever I need in stock. I recently had to do this dance in NJ, and it really sucked.

8. At one point, someone else accidentally threw out some of my meds. That was a fiasco.  I was storing them in a cooler because it was a camping event and the patches are heat-activated. So they took the cooler home at the end of the event and just threw everything in it into the trash in one fell swoop. An oversight anyone could have made, and I am not angry or blame them for what happened. However, getting those back was a nightmare. The contract states that if I lose my drugs, I’m SOL. However, I tried to explain that it wasn’t me who lost them, and that it was a legitimate story, and I was going to be very sick if I didn’t get them back. I still had to wait over four days for the docs and the insurance to agree to replace them, and by then I was Wacky Withdrawal Del.

9. I’m only allowed to use one pharmacy to get all my meds, opiates or no. They can and do check to make sure that happens. Remember that whole, “But I go out of town” business? Yeah, I have to account that I actually got my script filled in another state and am not receiving drugs from another provider. I’m not allowed to “shop around” to get my drugs, even when my pharmacy is out of what I need, or if someone else holds a sale.

10. If my doc decides that my situation has a psych element, he will refer to me to a psych and if I decline to go I can be booted from the program. Hurrah.

And before you say it (and please don’t), I have tried a multitude of other pain management options. I’ve done the Reiki thing, the acupuncture thing, the chiropractic thing, the herbal tea thing, the changing my diet thing (which I’m about to do again), the exercise thing, the severe weight loss thing, the meditation thing, the “your pain is a teacher” thing, the massage thing, etc, etc, etc. Some of these I still do, and they’re useful, but not the solution.

When people talk to me about suicide, the one thing I am completely clear and honest about is that I feel trapped in this cocoon of discomfort, and if I didn’t think Loki would kick my ass to Ragnorok and back three times with all eight of Slepneir’s hooves, I’d probably would have done it by now. Because I remember what it was like when I wasn’t wracked with pain, and I know deep in my soul I’ll never feel that way again until I’m dead.

I look at my pain as a reminder that life is never perfect. I can reach down pretty shallowly to connect with other people’s suffering. When I read about the sacrifices various Deities have made in their stories, I feel like I understand because for me, every moment I am out of bed is a sacrifice I am making. I pay for moments of lucidity, a high price for them indeed. I don’t take anything about my body for granted, because there are days when I’ve really needed it to do something and it’s just said “Nope. We’re on strike today.”

I tell people my primary relationship is with my illness, but in actuality it’s probably with my pain.

Even Barbie knows what it's like

Or don't. I've just ranted about it for almost 3000 words.

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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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The Reiki Thing

November 30, 2011 at 6:43 pm (Spiritual) (, , , , )

I get this question all the time, so I’d like to address it now and then use this as a reference for when I am asked.

I do not react to Reiki the way most people do. This has not always been the case. I have tried Reiki with several different people, from Reiki I to Master, in different schools of Reiki. So this is not a case of one bad apple not “doing it right”.

Of course, I don’t have definitive proof of why I react differently to Reiki, but I have a very strong (UPG) suspicion about it, that has been echoed by other neoclassical shamans who have similar reactions to Reiki. So it’s also not just a “me” thing; I know of at least three other neoclassical shamans who have adverse reactions to Reiki.

First, let me explain my physical reaction to Reiki. I find that this also applies to any sort of energy work that is “creative” (as opposed to “destructive”, not “unimaginative”) in nature, and I’ll explain that later. When someone applies Reiki to me, I feel:

  • extremely nauseous, sometimes vomiting
  • a sense of being penetrated against my will, even when I ‘allow’ the energy exchange
  • dizzy and disoriented
  • my pain levels increase
  • a strong sense that it is hastening my death (UPG, of course, but it’s how I feel)
  • whatever the Reiki is being used to alleviate (like a headache) usually triples in intensity
  • my energy feels “out of whack” for days afterward; a sense that something is wrong and I must fix it
  • it lowers my already-low immune response

I hope from reading that you’ll understand why I just say I’m “allergic” to Reiki. I have had these reactions observed by other people, especially at pagan events where people unintentionally (and intentionally, sigh) push energy onto me, such as when they hug me, or interact with me when I see I feel ill; usually this is without discussion first. (See this essay about energy work and consent in the pagan community written by another neoclassical shaman who has the same issues with Reiki).

Now as to the question of why. Here we wander into some very personal territory for me, stuff that I am not entirely comfortable talking about, so I ask that you just read this and accept it as being true for me. I am constantly inspecting and re-evaluating these thoughts and feelings, so this may change over time.

Sometime in May of 2011, something irreversibly changed in my energetic composition. At the same time, I was Informed that although I am still a madness shaman, that I will now also take on the sacred role of the Dying Man. The way it was explained to me is that some death shamans get to die and come back to life, and although they carry with them the stench of death, they can still live for many years (decades, even) carrying this connection with them. I am not like that. My death shaman journey is to die; slowly, publicly, over time, in a way that honors the journey towards death as being a sacred transition. This is part of the reason I titled the blog “Dying for a Diagnosis” – not because I really want to know what’s happening, to me, although I do, but that I am pretty damn sure I am going to die before they figure it out.

(I really, really want to point out that making all of this public was NOT MY CHOICE. I was Told, by Baphomet, that I had to make all of this shite public. Everything – the trips to the doctors, the spiritual observations, the good days and the bad days, until I can no longer interact with a computer – and even then, others may do it for me. I really didn’t want to do this. I hate sharing my medical stuff with strangers, and REALLY don’t like sharing my shamanic stuff with strangers. But I signed on the dotted line, and here I fucking am.)

The way this new energetic make-up manifests has been described as “lots of little black worms that are slowly eating away at me”. This is the manifestation of Rot and Decay that I carry with me all of the time. So you can imagine that when “creative” energy is applied to someone covered in these worms, the worms get all the energy, not me. This actually manifested during a particular acupuncture treatment, where I experienced the worms being “fed” a bunch of energy all at once; I was sick for days and it was an incredibly unpleasant experience.  I feel that this explains why I have an adverse reaction to Reiki; as I understand it (and it used to work on me quite a bit, before this remodel) the Reiki feeds the worms, and the worms eat more of me faster than planned. Thus the feeling of impending doom that I get; thus the nausea and the increased pain.

The “up” side of the worms is that they serve a very useful purpose. I can “pick one off” of me and place it on someone else (with their informed consent, of course) and it will eat away at things that are hurting them, like infections, cancer, etc. I wouldn’t call it the “anti-Reiki”, but I do see it as healing-destruction, rather than healing-creation. Part of being the Dying Man is that I can make other things die, too. (So don’t piss me off! 🙂 )

I hate this, because so many of my friends have dedicated themselves to the path of the Healer, and want nothing more than to bombard me with Universal Energy in hopes that it will ease my suffering. It actually makes me feel sad when I have to say no. I know it’s frustrating, like the whole “don’t diagnose me” thing, because people inherently want to help, and Reiki is a great way to be of service from a distance to the people that you love. So don’t get me wrong – I don’t hate Reiki – I have a deep abding respect of it and what it can do for people – just not me.

So please, respect my wishes and do not engage in any energy exchange with me without my express permission. I have found ways to filter and access certain energetic healing, but it has to be done on my terms and with my active (rather than passive) consent. That is, I have to work to accept healing energy, to get it to bypass the worms and get to my body.

In exchange, I won’t kill you. Unless you ask, nicely. 😀

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Rant: How Not To Be Helpful

November 15, 2011 at 12:37 am (Living With Chronic Illness, Medical) (, , , )

So it’s late at night; not the best time for a well thought out blog entry. However, after several comments on my Facebook today from well-meaning people suggesting diagnoses and treatments, I feel like I need to put my feelings out there once and for all.

I understand that I’m medically interesting. Four years of various symptoms and different medical problems that don’t quite add up to one Big Diagnosis puzzles people. They feel compelled to help, but don’t really know or understand how to manifest their feelings in a positive and helpful manner. 98% of the people who read or hear about my medical problems are laymen; that is, they are not medical professionals and do not have any academic standing behind their conjecture. The only way they can relate to what they see here is to compare it to people they know or experiences that they personally have had.

So I get a lot of “my uncle had…” stories. More than I can count. Usually use these manifest when someone reads about one or two different symptoms, so the person gloms onto those symptoms and tries to force a diagnosis. Most of the time these people do not know the whole story, or know what doctors I’ve seen, or what diseases have already been ruled out. (Clue: it’s a big list) At this point, if you are a medical layman and you hear about some of what I’m going through and a diagnosis comes to mind; chances are very high I have already heard it. Chances are pretty good that it has already been explored by the medical professionals in my life.

I’ve listed these before, but I feel like this rant would be incomplete without them. So far, I have seen: four neurologists, a rheumatologist, a pulmonologist, a sleep study specialist, a cardiologist, two primary care physicians, two infectious disease doctors, one pain management specialist, two OB/GYN’s, an endocrinologist, two massage therapists, one chiropractor, one acupuncturist, two shamanic healers,one hematologist/oncologist, one gastroenterologist, a bariatric surgeon, a general surgeon, and probably other doctors that I can’t think of off the top of my head. Let’s call this the most comprehensive list I have made public so far. I post this list not to brag, but to illustrate that I have had quite a bit of  professionals take a whack at what is causing all of my symptoms (or in the case of some of the specialists, some of my symptoms). If they haven’t thought of it, chances are someone with no medical training isn’t going to think of it either.

I highly resent the idea that if I am not open to random suggestions for medical laymen, that somehow I am not taking my health care seriously. I believe I have the right to draw boundaries around random Internet interactions (and even in person interactions) when it comes to discussing my health situation. I understand that by making a lot of my health journey public, and by titling my blog Dying for a Diagnosis, that one might infer that I would welcome such comments. The truth is, I’m literally sick of them. It only serves to further frustrate me and complicate the medical process.

I have an actual team of medical advocates, most of which have some medical training, who go to doctors appointments with me; they take notes, ask questions on my behalf, keep track of information from Dr. to Dr., and help facilitate intra-Dr. communications. They are allowed to suggest diagnoses. This is because they know the whole story, have heard what other doctors have said, know what diagnoses have already been suggested (and discarded), and understand that even though they’re on my side, I’m so sick and tired of suggestions that there is a very specific way to bring one up that doesn’t immediately trigger my gag reflex.

I want to be clear: I understand that these suggestions, from a place of love and concern for my general health. I understand that they spring from a feeling of wanting to help and not knowing what to do. I have a post that I’m still composing in my mind, called Strengths and Weaknesses, that will help clarify how people who feel compelled to help can do so in a way that is conducive toward making me happy and making my life a better place to be. I’m a little busy with some teaching stuff right now, but I promise that post is on its way.

I know that the Facebook thing is beyond repair, but I want to remind readers of my blog that comments that suggest diagnoses will be summarily deleted; and if you bug me about it, I will ban you from commenting on my journal. I think what I have learned from today’s situation, is that I am no longer going to post medical updates to Facebook.

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