A Patient Patient

March 31, 2012 at 8:47 pm (Uncategorized) (, , )

I am in the hospital, updating from my phone. I went to the ER Thursday night with cramping gut pain; it turned out to be my third hernia and I had surgery Friday night to fix it. I am doing all right, but have some incision pain and I don’t walk so well. I should be home in a day or two; I will write a better update the


Permalink 3 Comments

Caretaking the Caretakers

March 29, 2012 at 12:12 pm (Living, Living With Chronic Illness) (, , , , , , , , , )

Being a person with a chronic illness, I rely heavily on the love and kindness of people who, for whatever reason(s), offer me a great deal of consideration and help in order to make my life not just a liveable place, but also a worth-living place. Without these people, I would have problems with everything from eating to getting to doctor’s appointments to dealing with my emotional response to disability and beyond. It’s so much more than just making sure the Del-shell isn’t in imminent harm. It’s a complex and tiring job, even when distributed among several people.

I have a veritable cast of characters that keep the Del ship afloat. Recently, there are four people who do the brunt of the work:

  • Rave, who has taken on the bulk of the Del transport. She cleans my house, she packs me for events, she cooks meals, she handles my correspondence when I can’t, she knows more about my calendar than I do, and she is content to sit quietly at my bedside for hours just in case I might need something I can’t get on my own.
  • Fuego, who has, of her own volition, taken on the task of trying to find a nutritional approach to managing my pain and other symptoms. But beyond that, she has purchased food, offered emotional support, and been a tough cookie when I’ve needed it. She’s new to the cast, but she’s jumped in with both feet.
  • Winter. When all is lost and I can’t take another moment of life, it is Winter who talks me back into reality. I know I can reach out to him and be brutally honest with what’s going on inside my head, and he will lovingly listen and deconstruct, reframe and commiserate. And if nothing else, he’ll engage me in bitter gossip about people we love to gossip about, which always seems to make me feel a little better.

I try to do justice by these three (yes, there’s one more, be patient!) by engaging them only when I need, by thanking them and recognizing the work they do and making sure other people know about the work they do, and by offering them whatever I can in energetic or physical barter. I offer Rave shamanic and pastoral care counseling for free, as well as getting her into fun events for free; I talk to Fuego about things Fuego would probably rather keep personal for now, but also school her in Topping techniques that facilitate better relations with her partner; and I do a lot of reciprocal “being there” for Winter.

But there’s no argument from anyone in my life that the brunt of the work falls on my spouse and partner, Ninja. From dealing with all of the health insurance stuff, to making sure I have what I need to get through the days alone, to cuddling with me when I am sad or in pain, to being a boundary between me and the rest of the world when I need it, to headchecking me about waht my doctors tell me, and lots of little things in between, Ninja tries his hardest to be a loving, supportive partner to me. I know this is not what he thought he was getting when he married me, and in some ways I carry a lot of guilt around that. But he has never, not a moment, made my disability the focus of an argument. If anything he’s been the one asking me to slow down, to move slower, to think harder, before making a decision that may impact my health.

Ninja and I are not in the best place our relationship has ever been. It’s very personal to us, so I’m not going to share details about that. But I will say that even in all of this, in nary a moment has he withdrawn his support of me emotionally or physically. Even in the midst of a heated discussion, he will make sure to fill my CPAP at night and ask me how my pain is. I worry that some of why our relationship isn’t bright and shiny is because Ninja is burned out from being my caretaker.

He’s going to read that and think that this is somehow his fault, so I want to make it as clear as I can : Burnout is not a caretaker’s fault. I get burnout from my Work all the time, and it’s not my client’s fault. Burnout is a normal, human reaction to engaging our minds and our endocrine systems on high gear over a prolonged period of time. If every day is a potential emergency, our bodies try to stay at ALERT status all the time until finally, we reach the wall and fatigue sets in. A computer can only run for so long on a battery until it either has to spend some time in conservation mode or shut down completely.

What’s so difficult for people with chronic illness whose caretakers are also their romantic partners is that we desire to care for them as much, if not more, than they desire to care for us. We feel like we are takers, and our love desperately wants us to be givers as well. But I can’t do for him what he does for me. I can’t give him a weekend where I do all the cooking, take care of all the household chores, where I drive him everywhere and make accommodations for his comfort and well being. I can’t stop being sick and in pain long enough to do all the things my heart yearns to. There are days that I can’t even offer him the decency of a civil conversation, because talking will aggravate my symptoms or because I’m too tired.

There are ways that chronically ill people can care for their caretakers, but it comes with a very standard caretaking catch: the recipient has to accept the care, and see it for what it is, and take advantage of it. For example, I am often encouraging Ninja to spend the weekend away from home without me. Even when I explain to him that this is my attempt to give him “time off” from being my primary caretaker, and that it would mean a lot to me if he did this, and that I think it would do him a world of good, he frequently (if not always) refuses this. He feels his “job” is to be here with me, and even if he went away he’d be worried the whole time and feel guilty if something arose that needed his ministration. I don’t think this is unique to Ninja-as-caretaker, either. I think many caretakers would react the same way.

However, this is my plea, not just to Ninja, but to all people who are primary caretakers for someone who is chronically ill:

Please understand that the deep desire you hold to be there for us, to provide a supportive and loving environment for us free from as much suffering as possible is as strong for us as it is for you. There are very few things we may be able to do in order to fulfill this need the way we fulfill it for you, and so we ask that you be more open to accepting our care in the forms we can give it if at all possible. So if we encourage you to take time off, to pursue things that make you happy outside of our relationship(s) as lovers as well as caretakers, please accept this as you would have us accept a meal carefully prepared to our dietary specifications. See us making the financial sacrifices to allow for this getaway as a rose, carefully picked out and placed in a vase on the dinner tray. Envision us feeling warm and sated while knowing that you are doing something that makes you feel like a whole human being, the way you make us feel when you make sure we are comfortable in our own homes.

I’d love it if people could add suggestions of what chronically ill people can do to provide care for their caretakers in the comments.

Thank you, and you, and you...

Permalink 8 Comments

Kick Me In the Crotch

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

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

Not an accurate depiction of either procedure.

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

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

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

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

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

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

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

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

Permalink 8 Comments

Fighting the Avatar

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

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


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

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

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

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

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

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

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

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

A piece titled "On the inevitability of loss"

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

Permalink 3 Comments

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.

Permalink 5 Comments

SSDI: Everyone’s a Little Bit Disabled

March 12, 2012 at 2:35 pm (Disability, Living With Chronic Illness, Mental Health) (, , , , , , , , , , )

“You’re a little bit racist, well, you’re a little bit too!

I guess we’re both a little bit racist – admitting it is not an easy thing to do.”

-Avenue Q

For those of you who aren’t familiar with Avenue Q (and you should be, it’s delightful), you might want to watch the rest of the song so you fully understand the sentiment I’m sharing here.

I’ve been doing some research about Social Security Disability Income (SSDI). It’s not a well-known fact that I don’t receive SSDI as of now. Part of the reason I haven’t pursued it is because I’m in a situation where most of my financial needs are being met by my spouse. However, there is a deeply rooted part of me that hates living off of someone else’s income. It seems unfair that when we met, I was working 40 hours a week at a corporate job, and now things are, well, much different than that. I’d also like to worry a little less that if Ninja got hit by a bus tomorrow, I’d be homeless. Silly things like that.

However, as you may already be aware of, getting SSDI is one of the most difficult things a person can do, in terms of interacting with a government agency. If you thought it ruins a day when you have to deal with the DMV, well, interacting with anyone involved in the SSDI process is exponentially worse. You’d think that something designed for people incapable of earning an income through working for someone else wouldn’t be so much like, well ,work. It’s a controversial subject among the disability community, especially among those who suffer from “invisible” illnesses, because some people sail through the process with little friction and people equally qualified go for years filing appeal after appeal after appeal and barely being able to keep up with their medical bills in the meantime. Some people believe that everyone, regardless of disability, is rejected the first time – as though the government wants you to prove that you really want it and are willing to jump through the whole process twice to get it. My mother, who had suffered two heart attacks, kidney failure, osteoporosis so bad that she broke bones just walking around the house, was denied the first time.

Many disabled people attempt the first filing on their own, which may explain why so many are denied on their first pass. After all, no claim to SSDI is even valid unless you’ve experienced whatever disability keeps you from working for six months. So while you wait the six months to pass, and you’re forced to either cut hours, or get fired/quit due to illness, you’re expected to then somehow have enough stamina, energy, and most importantly money to hire someone to walk you through a process that appears from the outside as filling out a bunch of forms. You think to yourself, “I can fill out forms!” But when you get rejected, it becomes clear that there is more to this process than the forms.

Most success stories I’ve heard of include obtaining a lawyer who specializes in SSDI. Most SSDI lawyers take clients under a contingency fee; when your claim is accepted, you’re usually given a fairly large check to cover “back pay”, and the lawyer takes a giant chunk of that check. However, because they’re working under the assumption that you’ll win, they are incredibly picky about who they’ll take on as clients. I’ve already spoken to one who rejected me over the phone because I don’t have a diagnosis. It took him all of five minutes to decide I wasn’t worth the risk. He actually suggested that I file on my own, that no lawyer would take me on contingency since I don’t have a declarable disability.

Why has this process become so difficult? Why is it that in order to obtain services that can be life saving to those in need, we have created this labyrinth of legality and paperwork in order to have an experience most people find demeaning – having to accept money from the government because we are incapable of doing something expected of every human over the age of 14?

My most optimistic answer is this: Because everyone’s a little bit disabled.

When you do research on SSDI, it’s not hard to find yourself reading incredible stories about people claiming disabilities that you might think of as being part of everyday American existence. One of the most controversial is obesity; in some courts it is outright ignored and you may possibly be sited with contempt of court if you continue to file for SSDI for being overweight or obese. Psychiatric disorders are another controversial area in regards to SSDI, as there’s a very nebulous area between one’s mental illness having very little impact on a typical workday and requiring full time inpatient care. According to some, there’s an increasing rate of people claiming depression as a disability, wherein their depression stems from not being able to find a job in this economy. So I need SSDI because I’m so depressed about finding a job that I can’t find a job? The word “entitlement” gets thrown around a lot, because some people do have a sense that if they pay Social Security while they’re working, all they’re asking for is the ‘right’ to access a program they helped fund.

I thought about including links to cases where SSDI was awarded for some pretty odd claims, but honestly, I don’t want to sit in judgement of others (at least in a public forum). I’m sure that there are people who will read this who think the fact that I am considering applying for SSDI to be a little entitled; after all, I’m not hungry/homeless/naked and I seem to have enough money and ability to travel to many events along the East Coast as well as teach at them. So I will sit this one out.

The intersection of experience from my point of view is that it’s very similar to getting accepted to and being in the pain management program. It took some time and legwork to get accepted, and I have to live by some pretty strict rules that sometimes feel draconian and/or unfair. Most of these things exist because of people who need opiates to fuel an addiction, or as a profit revenue, rather than to treat pain. As time goes on, the rules become more stringent, and those bent on circumnavigating those rules become more crafty, and the people who end up paying the real price are the patients who need the medication for pain-based conditions*. This is also why the SSDI process has become so complicated and negative; there are many people out there who either fraudulently or honestly believe that they deserve SSDI for their disability, and will find ways to game the system until they get it. (For some people, SSDI is more lucrative than welfare and has less restrictions on supplementary forms of income. For example, you can work a very part time job while on SSDI as long as it doesn’t require you to perform tasks that fall under your disability, and you can’t make more than a specific amount each month. On welfare, if you obtain a part time job, you are much more likely to be dismissed from the program.)

There is also the doctor conundrum. In order to get into pain management, or to obtain SSDI, you need to convince a doctor to recommend you and state their findings on paper. So it means making an appointment with someone and trying to convince them that this is something you really need. Some doctors just don’t play – many GPs/PCPs will defer that sort of thing to a specialist, and they’ll happily give you a recommendation but they won’t do the legwork themselves. Some specialists will then further refer you to a specific specialist whose practice focuses on people who need this sort of service. In my experience attempting to get into pain management, I ended up seeing  a specific rheumatologist that I had never seen before, who gave me a quick exam and declared that although she was sure I didn’t have fibromyalgia because I didn’t have the diagnostic tender spots, she would happily recommend me to the pain program for a small fee. And lo and behold, when I arrived at the pain management doctors, my diagnosis was “fibromyalgia”.

Recently, I heard a couple of stories about a rheumotologist whose patients were readily being denied SSDI because he had garnered a reputation; as one judge put it, “He thinks everyone’s disabled.” I don’t know if this is because he was a ‘pay a fee, get a rec’ sort of doctor, or if because he was a fibro specialist his practice had a larger volume of people so crippled with the disease that they needed SSDI. It doesn’t matter, because now the courts in his area regularly throw out his recommendations, so he’s stopped giving them and instead refers to another doctor.

My pain management specialist is a ‘pay a fee’ guy; I feel ethically dubious about it, but I’ve taken advantage of it too. He will approve you for handicap placards, or SSDI, or adaptive technology, if you pay a fee to have his office do the paperwork entailed. Now, again, I’m not sure if this is because he believes that once you’ve passed through the hurdles to be seen by him, you’re likely qualified for what you ask for; or if he’d actually say no if he thought someone was scamming; or if it’s a lucrative side business that circumvents the insurance (of course these fees are not covered by insurance!).

Anyway, I’ve really digressed from the thought that inspired me to share all of this with you. I know people who have received SSDI who are capable of working in some capacity. Because the other part of the challenge of getting SSDI is not that you’re too disabled to do whatever job you were doing before; you have to prove that you’re incapable of doing just about any job. So even if you’ve worked on a farm all your life and now you can’t, if you can still physically withstand the rigors of being a file clerk, that will come up in your court hearing. But as a society, we become more compassionate and politically correct around disability, we’re also softening some (not all) of the stigma that comes with the disabled label. Therefore, it becomes morally easier for someone to look at their body and find things that are wrong with it, declare themselves disabled and then seek out SSDI. I know that I was offered state government assistance to apply for SSDI back when I was suffering from mental illness enough that I was in a day program. For me, the stigma was enough to make me go out and get a job and leave treatment. I wanted to prove to myself and others that I was not too crazy to work. Was I really? Nope. I was capable of holding down an temp job that asked very little of me other than typing and Fed-Exing.

I think there are some experiences that are almost universal, that qualify some people for SSDI. Pain. Depression. Anxiety. Back problems. Hyper/Hypoglycemia. It’s all a matter of degrees, and that’s where the governement has to make a judgement call. It’s hard to rule one person’s experience of pain more severe than another’s when they’re both reporting an 8 out of 10 on the pain scale. I mean, my 8 and Ninja’s 8 are totally different, because our life experience of pain is different. I feel like because I haven’t experienced childbirth, some doctors don’t take my higher numbers seriously because childbirth is often used as The Holy Example of what 10 out of 10 pain is (and for men, it’s usually a large kidney stone). And it’s hard for a doctor, a lawyer, a judge, a clerk to know how much depression is enough. How much pain is enough. Who is cheating the system, and who just doesn’t understand what disability is really like? Who is so desperate for income that they feel they must lie, and who is desperate for income because waiting six months to prove their anxiety is bad enough that they can’t work a regular job?

It’s an incredibly difficult situation, and regardless of how you feel about the Social Security Administration and its role in America, I hope you can see that its sword cuts both ways. For as many times as you hear about someone who may have gamed the system to get benefits, there are just as many stories of truly disabled people who are denied time after time.

*I changed this wording from “real conditions” to “pain based conditions” because I believe addiction is a “real condition” that requires treatment, just not opiate treatment. But as I strive to use as inclusive and compassionate language around opiate addiction, even when it frustrates me, I decided this change was necessary.

I ask that if you comment on this post (preferably here, but even on the social medium what brought you) to be compassionate in your reply. I know the SSA is a hot button political topic, and there are many people (even in my social circles) who would dismantle the whole thing. I’m not forbidding you from sharing your thoughts and feelings, but do it from a place of understanding that this is what we have to live with now, and there will be people reading your reply who may be in legitimate situations of need.

Permalink 9 Comments

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.

Permalink 17 Comments

My Grandfather Died

March 4, 2012 at 6:26 pm (Death and Dying, Spiritual) (, , , , )

In a way, the title says it all. Wilbur Fischbeck, my maternal grandfather, passed away on Wednesday morning around 2am. He was 86 years old and had been battling several attacks on his health, the most notable being advanced Alzheimer’s disease.

He and I weren’t particularly close. He was a fine grandfather, don’t get me wrong. He was cheerful and interactive, welcoming and friendly. As I grew from childhood to adulthood, it became clear in very subtle ways that he didn’t approve of my less-than-heteronormative life. I don’t remember him outright saying anything about it, but he just didn’t say anything at all. I get this sense from my cousins – who are, at least from the outside, your stereotypical heteronormative adults who got married and had kids and live in the suburbs and have “real” jobs – that he was much closer with them and their children. I did visit him from time to time, and tried to make conversation with him, but I had the same problems with him that I do with anyone from “Mundania” – I can’t talk about my relationships, or my vocation, or what I do for fun, or my politics or religion, or even things I consider to be achievements. All of it comes from me being kinky, queer, trans, poly, liberal, etc.

He fought in WWII in the navy as a spotter and a fireman. It makes me proud that there are relatives of mine who served in the armed forces – my half-brother was also a Navy man, and later on went into the Reserves and served several times overseas – because I believe any kind of service that comes from your heart and your dedication to mores and ethics is honorable. I don’t care if you serve the country, or the laity, or a disabled dominant, or an aging parent; all service given freely is honorable.

He wasn’t a boisterous kind of guy, at least not around me. We played dominoes a lot. In fact, I am going to buy a set of dominoes for him for my altar, as I feel sort of weird asking my grandmother for an artifact of his for that purpose. He loved playing games, and he wanted you always to play to win; he won a lot.

A lot of my personal thinking and feeling surrounding his death is on a bigger scale. This is the third family member that has died (my father died in 2008, my great-grandmother died in 2000) that I am not very sad about. With my father, it made sense to me; he and I were basically estranged by the time he died, and our relationship had almost never been good. My great-grandmother I didn’t know very well and I had very limited contact with.

I’m just not that close to my birth family. It wasn’t something that was a big deal in my home growing up, this sense that Family Is Important. My family was tumultuous and dysfunctional on a pretty big scale, and there was never any sense that we were a “team” or a “unit”; it always felt more like we were a bunch of strangers thrown into a house together and told to duke it out as best we could (a great reality show these days). My mother has tried, especially in the last ten years, to create some sort of family cohesion amongst my nuclear family, but most of the time I feel like our attitude is “too little, too late”. We don’t live near each other, we don’t have any holiday traditions in common anymore (my mother is Baha’i, my sister and I are pagan, and my brother is some form of Buddhist, last I remember), so other than American holidays like Thanksgiving or Fourth of July, we don’t have any innate urge to get together. I visit my sister and mom (who live together with my sister’s fiancee Mike) once a year, usually around December. When I think about it, that’s very silly, since they live in NY and there’s usually snow to contend with.

You’re going to think I’m odd (too late) but I keep waiting to have this cathartic death experience. When I find out someone is dead and it just rends me. I was sad when my father died, and it took a while for the news to sink in, but overall I was able to process that and move on in about a day. I know some people who, when someone in their family dies, are still grieving about it six months, a year, two years later. I don’t know if it’s my casual relationship with death, my knowledge that I can contact dead people if I really want to, the lack of intimacy with those I know who have died, or what, but the last time someone died and I got really upset about it was a friend who died from AIDS back in 1995. And even then, he was more of a casual acquaintance.

So I went to my grandfather’s funeral. It was strange. Everyone seemed happy I could make it (we had to find a ride because Ninja can’t drive for another two months), but there was a palpable awkwardness to it all. I hadn’t visited Grandpa in the VA Hospice, because I didn’t want to spend time with someone I didn’t feel intimately toward when there was a really good chance he wouldn’t know who I was, anyway. The positive part of the funeral was seeing my niece, who has grown up too fast and now has a pink streak in her hair and watches Anime. Seeing my cousin’s children (are they my second cousins? I never understood how that worked) was also enlightening. It’s been a long time since I’ve been to a gathering of my maternal family. (I have never met anyone related to my father except for my half-brother. Well, okay, I met my paternal grandfather when I was <1, but I don't remember it.)

I feel like a good death shaman (even a half-assed one like me) should have something profound or interesting to say on the passing of someone related to him, but I don't. He was old, he was sick for a long time, and I'm happy he's no longer struggling or suffering. I'm sad that my grandmother is alone; I worry that she will go batty without someone to care for. She went from caring for my great-grandmother (her mother), to my mother (until my mom moved in with my sister), to her spouse. Now she's at odds in an empty house. I almost want to buy her a gift certificate to Harrington, where she likes to play the slots. I see a lot of slot playing in her future.

I'll still honor Grandpa at Samhain this year, and I'll buy those dominoes for my death altar, but I can't shake this sense that I'm missing something about this whole death thing that other people find highly emotional.

Permalink 3 Comments