Spiral

April 21, 2015 at 7:59 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Living With Chronic Illness, Medical) (, , , , )

It’s been some time since I updated ye faithful readers as to what is going on with me medically.

Some of you may know that I’ve spent more time in Johns Hopkins than I have in my own home since August 2014. I was diangosed with right-sided heart failure and we struggled to figure out why I kept slipping into volume overload (when your body has a lot more fluid in the tissues) after being discharged. There are a lot of theories, but the story is about to change, so don’t jump to leaving a comment just yet.

When I get that swollen, the infected tissue from my pannus starts to hurt tremendously.

So the status quo since August has been:

  • Go to Johns Hopkins ED as directed by another doctor
  • Spend a month diuresing down to my dry weight
  • Deal with bad pain from my pannus
  • Get to dry waight, get discharged with plan
  • Do the plan by the letter
  • Notice that the swelling is back
  • Seven GOTO One. (in less geek terms, rinse and repeat.)

I’ve been in the hospital more often than I’ve been home in the last six months.

Things are moving quickly, but not in a way I would have chose.

Today I learned that my congestive heart failure now includes both sides of my heart (whereas before I had been diagnosed as having right-sided heart failure). This obviously affects my prognosis, and not in a good way.

I’ve gone ahead and canceled gigs through the end of the summer. Not only does travel become much more complicated when you’re terminally ill, but I can’t guarantee I’ll be out of the hospital, much less felling well enough. And that’s not fair to organizers.So if you’ve been hoping to catch up with me at Beltane, FSG or some other event I am usually at, you should start thinking about an alternate plan.

Tonight they are moving me to a different part of the hospital. I joke with my nurses that I’m trying to win “Hopkins Bingo”, where a patient must have a stay of longer than 24 in a building in order for it to count. When you’ve stayed in all of the different buildings, you win. I got a difficult square this time; Bloomburg is 95% pediatrics, but one floor is the cardiac ICU stepdown, which is where I was. That’s not easy to get at all unless you’ve been playing this game far too long.

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Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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Still Not Dead

June 26, 2014 at 11:12 pm (Death and Dying, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , )

I think I’ve told this story before: when I called my mom, I would always start by saying “I’m not dead!” This was because once she chastised me for waiting too long in between calls and it left her worrying I might have died. In fact, she would often leave messages for me that would said, “I just want to know you’re not dead!” It was a playful thing between us, because of our shared dark humor about living with chronic illness.

I say this to you because it’s been a while since I’ve posted anything on either blog. One would hope that means that there’s nothing to write about, but in fact the opposite is true. Things have been both busy and difficult in my life as of late, and I’ve had so much on my plate “writing a blog post” almost seemed like a frivolous endeavor.

It is made more complex with a new neurological symptom I’ve gained. For years, I’ve suffered from a very soft form of aphasia – basically, I can look at a cup, and know it is a cup, and can describe what a cup does, but I can’t say the word “cup”. It’s like someone has temporarily erased it from my memory. Now I find myself misspelling simple words over and over again (It took me three tries to get ‘misspelling’ right!) until I give up and use spell check. If you’ve seen me type, you know that I type super fast – 110 WPM, last measured – and I rarely get hung up by a word like that. And the words that catch me aren’t super difficult ones to spell – I spent 10 minutes on “column” the other day, writing “collum” over and over again. Needless to say, that makes it hard to write.

The big news about my health situation is my kidneys. As I shared earlier, I gained a large amount of water weight in a very short amount of time. I’ve been on several different diuretics, and use a pneumatic pump on my legs for 4-6 hours a day to push the fluid from my legs back into the core circulatory system. I’ve had to buy new shoes because my feet are swollen enough that my normal ones don’t fit. I have to be careful about my fluid intake – too much and I swell more, too little and I get dehydrated fast. It is really annoying and nothing seems to help.

It seems we’ve narrowed it down to where it’s very likely my kidneys. Not only am I dumping a lot of protein in my urine (symptom of kidney problems), but I’ve had flank pain that gets worse when I am dehydrated. I’ve seen a nephrologist and right now he has me getting blood and urine tests every week to see what needs to be done to get me on track.

There are also a host of other symptoms that cropped up, and we are trying to figure out what is related to what. I am having night sweats, insomnia, incredible fatigue (not just being tired because I can’t sleep at night, but being too tired to do anything and running out of energy just from sitting around and talking to people). My gait has suffered and even just walking around the house can be difficult.

There are also a host of things going on in my life that cannot be pushed back or avoided. My soon-to-be-ex-husband wants to change our separation agreement in ways that require me to have legal representation (ie, because I don’t agree with his proposal), but I can’t afford a lawyer and, sadly, my magical rolodex has yet to rustle up a family lawyer willing to take me on pro-bono. As separation agreements that don’t involve child custody are seen as very low priority, organizations like Legal Aid don’t cover them. So I have been applying to various charity organizations while simultaneously trying to prepare myself to represent myself pro se. I would rather eat rusty nails than do that, so I’m putting a lot of time into finding alternatives. There is also a lot of drama from that sector, and that’s all I’m going to say about that.

I also had a friend die from pancreatic cancer, only two months after being diagnosed. I spent time with him both as a friend and as a death shaman, and in the end I hope I was useful in helping him prepare to transition. I was there the night he died, and I did what I could to guide him to his next adventure. It was difficult for many reasons, and he was so treasured by his friends that the hospice actually thought he might be some kind of local celebrity. I think about him often. (I am planning to write an essay just about this, but I am not ready yet.)

It still feels like yesterday that my Mom died, and I’m still trying to tie up lose ends with my maternal family. I can’t seem to communicate with them clearly, no matter how hard I try. I had hoped that maybe my Mom’s death would help me reconcile with them, because I never met anyone from my father’s side, so they are all I have when it comes to blood-relations. But if things keep going the way they’re going, I may have to accept that my mother was the person who kept me connected to them, and with her gone there’s nothing left. I don’t know.

It’s funny, I started this post wanting to write about something very specific. I tried to post about it to FB this afternoon and my keyboard kept “accidentally” erasing it. And now I just don’t feel like I’m ready to write about it in any detail, so instead you get this. But it’s better than nothing, I guess.

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Finding New Depths

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

It’s been a while, hasn’t it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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If I Eat a Crow, Will I Get Sick?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I’m The Fridge

August 25, 2013 at 12:29 am (Chronic Pain, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , )

…and the diagnoses are the spaghetti.

Still at Johns Hopkins, and it looks like this trip is going to end very unsatisfactory. After being absolutely certain that the problem lied in my kidneys, they have now ruled that out completely. I don’t really understand how, as some of my symptoms are unmistakeably kidney related, but the doctors assure me my kidneys are just fine, other than the small stone that is “in a place I shouldn’t be able to feel it”.

So today’s crazy noodle is some sort of lung issue combined with neuropathic pain. The chest x-ray they took showed that part of my right lung is not getting as much oxygen as it should. Of course, this could easily be explained by the fact that I’ve been having crippling flank pain for over a week now, forcing me to take shallow breaths, but of course that would be too easy.

From what the doctors said, it looks like their plan is to run a few more tests, let a few test results come back from the lab, but otherwise begin the transition towards discharge. They’ve already lowered my pain meds; normally I’d be cool with that, except around dinnertime I got another giant stabbing, burning pain in my flank and now nothing the nurses can give me helps at all. I spent most of the night sitting still in the chair, trying hard to find a position that doesn’t make me cry. Gah.

What really upsets me though, is that the doctors are already talking about how I should chase this problem down as an outpatient. However, and it’s not their fault, but I can barely keep up with all the doctor’s appointments I have now. Between not having a regular driver who can bring me from Hagerstown to Baltimore, not feeling well enough to leave the house, not having the money to fill any more prescriptions or other medical shite thrown in my direction, I don’t know what the hell I’m going to do to chase this down. They’re talking about attempting an MRI again, although this doc says she knows of a few machines that might accommodate me better than the one here. The intern stopped by this evening and asked me a bunch of questions that were dancing around the idea I might have MS: this is one of the most bandied about diagnoses I’ve heard since this all began, but the diagnostic criteria are either a) spinal or brain lesions on an MRI or b) ruling every other disease on the planet out first. I might actually be getting close to the latter, these days…

But I have to say, this hospital stay has been exceptionally hard on me. It’s a combination of factors: I’ve been alone more; every time I feel like I understand what’s happening with, and to, me the rules change; I’m in the “historic” building this time (if you think the 1970’s were “historic”) and the room isn’t as cheerfully appointed; I haven’t been able to eat or sleep like a normal human being in more than a week; oh, and let’s not forget Dr. Laing’s shenanigans. I can’t recall if I’ve ever secretly planned to sneak out of a hospital AMA before.

I also am feeling this crushing weight on my heart because, for so many years, loved ones were pressuring me hard to seek out Johns Hopkins in hopes they would be able to solve the greater Del mysteries. Now that I’m here and in the reality of it, people are constantly asking me why. Or why I haven’t moved on to somewhere else. Here’s the truth of it: it’s really not that easy for someone like me to up and move all of his health care around. I mean, I’ve been in Hagerstown for just about a year and I still have at least one doctor in Germantown I have yet to find a counterpart for. Getting my pain management shit transferred was a big deal (although, another benefit of having suffered through the wean is that if I don’t like what his next move is, I can likely find another pain management doctor fairly easily now), and now I have a huge amount of data here referring to my abscess adventures.

In fact, I debated going to the Hagerstown ER when the flank pain didn’t get better. I figured any hospital worth it’s weight should be able to heal a kidney infection, right? But the more I thought about it, the more complicated it got. We’d have to get all the office info for my JH doctors; they wouldn’t have any of the information about the abscesses; they would have to get all my CT results so they could compare now with before; and of course now that we know it isn’t a kidney infection but something more difficult, I’m glad I didn’t.

I have decided, however, that I am using the next few weeks as a time of omens. There are some big questions on my plate that I have been very slowly compiling data on, and depending on how this plays out some of those questions will be easier to answer. For example, if one of the doctors decides to go gung ho on finding MS or something like it, I would be more likely to invest and take the long route. And that’s all the hint you’re going to get.

But for now, I have to figure out how to sleep when my back and side on are fire.

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The Jig Is Up

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So where does that leave me?

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

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

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

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

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

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

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

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Home

June 11, 2013 at 2:06 am (Disability, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , )

When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing

Wind that makes the tall trees bend into leaning
Suddenly the snowflakes that fall have a meaning
Sprinklin’ the scene, makes it all clean

Maybe there’s a chance for me to go back there
Now that I have some direction
It would sure be nice to be back home
Where there’s love and affection
And just maybe I can convince time to slow up
Giving me enough time in my life to grow up
Time be my friend, let me start again

Suddenly my world has changed it’s face
But I still know where I’m going
I have had my mind spun around in space
And yet I’ve watched it growing

~”Home”, The Wiz

I’ve been spending a lot of time here in the Apartment at the End of the Universe, as my current health situation requires it. I’m still healing a wound from the inside out, in hopes that by doing so it will create scar tissue where I’ve been developing these abscesses. I’ve been attached to a machine called a Wound VAC, that basically sucks out the fluid from the wound, helping it heal faster and keeping any pockets from forming. I have a nurse who comes to my house three times a week to change the bandage and check the wound, and in order to receive that service I have to remain “homebound” – which has been explained to me as “a state in which leaving the home is very difficult or a major effort”. There’s the practical side of it – the nurse comes here three times a week, so I have to be here for those visits, and can’t make arrangements to get the same service somewhere else (which was the opposite of what I was told in the hospital, but whatever). As I didn’t know that the home nurse could be taken away if I am no longer considered “homebound”, I mentioned to her an upcoming weekend trip, and that’s when I learned that I can’t even discuss with her leaving the house on a regular basis for anything other than a family emergency or somesuch. So I’ve just been having a few “family emergencies” lately.

It is a hard thing for me to accept, this idea that I’ve been classified “housebound”. I mean, I am deeply grateful that the nurse comes here, rather than me having to make arrangements to be driven to the local wound care center three times a week. Right now, my only means of transportation during the “work day” is a woman I pay an hourly wage to drive me places, supported by a few incredibly awesome friends who drive long distances to take me to appointments when my driver cannot. I flat out could not afford to pay to go to the wound care center three times a week; they have a van they could pick me up in, but then I’d have to use either my walker or cane to get around as there would be no one to push my wheelchair around, and the layout of the center would mean a great deal of walking. Walking has become more and more difficult for me, as my legs have been both swollen and very painful to touch, much less walk on. There are days I use my walker just to get around my house, which isn’t very big.

I also have been adapting to living in Hagerstown, which is in western Maryland, not close to either where most of my friends live, or a major urban center. It’s about an hour and forty minutes to Baltimore, and two hours to DC. I don’t have any friends who live close enough or who have open enough schedules to get together to do anything fun; there’s not a whole lot going on in the general area that could be done between the time Rave gets home from work and we go to bed without a significant amount of driving. We really feel like the “…at the End of the Universe” part of our house’s name has turned out to be more true than even we originally thought. We can’t jaunt out to a Tuesday night BR class or a Frederick munch without significant planning. There’s not a whole lot for non-drinking weirdoes to do in Hagerstown outside of going out to eat, which we can’t really afford.

This happens to intersect with a lot of other pondering I’ve been doing about the concept of “home”. The last few weeks, since I’ve been trapped at home a lot (save for a couple of weekend events), I’ve been spending my solitude doing a lot of mental processing about the divorce. It sounds ridiculous, but even though I suspected something was amiss in our relationship for months before the shit hit the fan, I was completely unprepared for the reality of our separation. Added to that, I really expected how he and I would deal with our separation completely differently. He continually swore that he wanted to remain “friends”, that he would uphold his oath to be my “family”, but other than terse emails about logistics (mostly money), he refuses to talk to me at all. I’ve offered to meet him face to face, talk to him on the phone, or even trade emails, but he doesn’t even say “no”, he just refuses to respond. Any time a conversation turns from logistics to anything personal, he cuts off correspondence completely and/or only responds to the parts of the messages he wants to. I find it so ironic, because I would never have guessed that it would be me reaching out and trying to start the reconciliation conversations; I am pretty honest with people that I am very, very rarely (if ever) friendly with my exes. This is not the first time that my partner tells me that they want to be friends with their exes, but then when things end they actively ignore me and pretend I don’t exist unless they absolutely have to deal with it.

I was very hesitant to get married a second time. My first marriage was pretty much a huge disaster, where I suffered emotional and mental abuse, and the relationship-I-call-spousal-even-though-we-never-got-married wasn’t much different, although to be transparent I feel that relationship was bad for both of us in hindsight. I also constantly struggled with my ability to trust my STBX, knowing he had a history of cheating on his partner and not much relationship experience under his belt. But what happened to change my mind had nothing to do with love or romance (especially since neither of us are particularly romantic people). I really had begun to feel that he and I had created a family unit; my love for him was as much familial as it was erotic.

I have a complicated relationship with my birth family. I love my mother and my sister very much, and I talk to them on a semi-regular basis. But that’s about all I have in my corner – I never really met anyone from my father’s extended family, so I don’t have any relationships there, and my maternal family…well, “black sheep” doesn’t even begin to explain how they treat me. I mean, they try to be friendly when we’re forced to be at a family event together, but none of them call me or know anything about my day to day life at all. And this lack is something I have keenly felt for a long time – I have a whole composition notebook I filled with angsty prose and poetry back when I was 24 or so, most of which was directly about my lack of “home”.

One of the terrible things I had taken away from me when I went through my shamanic transition was that the town I grew up in, the only place that really had any nostalgic magic for me, I lost that connection with it. I used to go there from time to time and go to places I used to hang out at when I was a kid, and I would get a sense of deep love and belonging from the place. I could “fill my cup” of having a place that fed my need to have a place I knew intimately, a place where I could find my way around without a GPS or a map or Yelp or anything like that. Where I could speak to the land spirits without much difficulty, on a regular basis, and knew what kinds of offerings they liked and where to leave them. When I left NY for MD, it was like someone went back to my hometown and turned all the spirits away from me; I describe it as “tasting like ash”. It feels like it belongs to someone else, someone I used to know, but isn’t accessible anymore.

When I married Mike, we were also making a commitment to live in Maryland for at least 10 years. We had discussed it at length, considered buying a house and creating roots. Before then, we weren’t sure if we would go back to NY (since we were both natives there) or maybe hang out in MD for a few years, or what. No, we made the considered decision to created family-of-choice ties with our friends and lovers in Maryland. That’s why our wedding was less focused on us declaring love for each other, and much more focused on the concept of “creating a family”. For me, this was so incredibly important and emotionally satisfying, because it gave me something I had been looking for; a sense of “family”, and a sense of “home”.

This year, due to a lot of little and big reasons, I decided that I would start looking for new-to-me events to teach at, and maybe take a break from some events I have attended for many years. So far, it’s been pretty good; but tonight I’m dealing with an unexpected consequence of that decision. Due to the “housebound” stuff, as well as some other medical stuff going on, I am home on this night for the first time in at least seven years. This week is Free Spirit Gathering, a Pagan camping event in Northern Maryland that I have attended since 2003. This is one of those events that I don’t even contemplate when I make a year’s calendar; I just know I’m going to be there. The last few years, I’ve been the department head of their mobility and roving security department, as well as teaching a few classes. It was the first big event I attended after moving to Maryland. I know probably more than 50 people who attend the event, and most of them I consider to be friends, if not family-of-choice. I stay in the same cabin with my Leather family every year, and we all know which beds are for which people. It’s not even discussed or thought about, it just happens.

Over the past month, it became clearer and clearer that I couldn’t go, at least not for the week. I tried very, very hard to change that, because this depressive funk I’ve been stuck in would definitely benefit from being around my family of choice, being in a place/time that feels homey to me. I love the campground where this event takes place, and feel connected to it as many others do. And there is an energy that awakens the land during this particular event that I do not feel when I am there with other groups.

At the same time, many of the things that make the event feel homey were starting to fall apart. My partner Winter decided not to attend; this was the one event we attend together where we spend a lot of time just hanging around each other (rather than running from one thing to another). I understand why he decided not to go, but then we got into a very strange place in our relationship where we stopped talking. I’ve reached out to him and told him I would really like to talk, and, like the STBX, I just get silence. I decided that must mean he needs time to deal with this strangeness, so even though today is his birthday, I decided not to call even though I very, very much wanted to. I feel the lack of our connection deeply; not just the lack of communication, but like I do not matter to the Clan we both belong to – another family I have tried to make my own. I feel like decisions are made without even thinking to let me know, much less asking for my input. I don’t understand where I stand in the structure, so I have decided not to push the issue and just let things happen as they do. But I can’t say I’m happy about it.

My Bear Family, another family-of-choice I love dearly, has also declared that this year is the last that they’ll attend FSG. I completely understand this decision, as the FSG community has been very negative (and at times, downright nasty) to some of us, and it’s just best that we leave places where it’s clear we’re not wanted. However, there isn’t another event that we all attend en masse. In fact, we haven’t all been in the same place since the STBX left us. I don’t know what the future of our family will hold, as we used to have a clearer vision as to who we were and what we wanted to do, but we don’t spend enough social time together to talk about it or actually make anything happen. I’m hoping that maybe, if we mutually decide to skip FSG, that maybe we can all decide to go somewhere (an event or not) together once a year, if not more often, just so we can all hang out together.

So maybe you’re beginning to see why I feel so…divorced…from feeling like I’m at “home”. The place I live in is nice, I love this little house, but it feels so much like a “landing pad”. I don’t want to put down roots here, because I don’t like living so far away from any of my close friends or any semblance of a social life. I’ve been openly thinking about moving to Massachusetts, but I don’t know how I’m going to afford that, or deal with many of the issues that I’d have to settle before I could do that. I’d have to find a completely new medical support system. Granted, I do have a group of friends who live within a two hour radius of each other, so at the very least I wouldn’t feel quite so solitary in the sticks.

I remind myself that this is supposed to be a year of contemplation, and living in a place that feels temporary does contribute to that, as well as being forced to stay home more often. I’m just having a terrible time keeping “contemplation” from becoming “rumination”, where I start to think about all the things that have gone wrong in my life in the past two years and how I ended up where I am now. A lot of my current situation was not by choice at all – I did not choose to move to Hagerstown, it just sorta happened. I did not choose for my STBX to completely cut me out of my life. I did not choose to develop new illnesses that make leaving the house even more difficult than it was before. I did not choose to have my financial situation tank quite this badly. I don’t want to sound like I was just standing there while all these things happened to me, as though I had no control at all; I know that’s not true, but that’s another contemplation/rumination issue again.

So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve? Is anywhere ever going to be “home”? Am I ever going to look at a mountain, a river, an open sky, a horizon and know that this particular place sings to me like no other? Am I ever going to collapse into a bed and really feel 100% comfortable to be myself in that space? What do I need to do to make these things happen? Is it worth it, if I think I don’t have much time left?

I have this (pretty standard) desire to die “at home”. I absolutely do not want to die in a hospital. I want to be somewhere I feel totally comfortable, where I feel loved by both the people and the vaettir of the place, where I can release my attachments in the safe knowledge that the love I feel will go with me to the other side. And what I’ve realized this past month, is that I don’t know where this place is, or who will eventually end up being in that circle. It’s tempting to look at the people I hold close right now and know they’ll be there, but if you asked me eight months ago, I would have given you a much, much different answer than I would today. Nothing is permanent, everything is possible. I’m starting to wonder if I should just embrace the idea of dying alone, so I don’t have to worry about all the drama and heartache that goes into finding these things. I’m so tired of it. I’ve put so much work into making so many families, only to have to leave them in ruins, or be asked to leave as they outgrow me, or find out they never took it as seriously as I did, or whatever. Maybe this is why when I reach out to my ancestral line, I get crickets. I belong to no family, I have no line, I have no home.

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Am I Lying?

May 8, 2013 at 7:14 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , , , , , )

It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.

It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.

I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”

But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.

This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)

I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.

I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.

When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.

And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.

In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.

In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.

Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.

How does any of this have to do with whether or not I’m a liar?

I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.

I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.

I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.

I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.

I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.

That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.

I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.

I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.

I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.

When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals  and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.

It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.

Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.

But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.

So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.

 

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