In Which I Ramble and Make No Particular Point

Let’s get the normal stuff out of the way first. My kid is finally eating solids, though I’ll admit it’s not much, but she’s actually trying foods and eating them. She still nurses entirely too much and I know she’s bored but I’m much better at entertaining older kids. Being a parent is tough for weird reasons. I was in physical therapy for eight weeks and it actually helped, and then they discharged me and so now I have to self-motivate to do my exercises at home. I haven’t done any. In the meantime, I’ve got an appointment to see an ophthalmologist and my ears are being weird. I’ve had problems with both ears, but the right ear in particular, feeling stuffed and painful for a while, but lately I’ve felt like I have trouble hearing sometimes. I’ve also got to make appointments to get some imaging done: MRI of lumbar spine, ultrasound of thyroid, and I need to visit the Dizziness and Balance Center because ten years of dizziness deserves its own specialist apparently.

Moving on.

I’ve always had this issue of wondering if I’m daydreaming or astral-ing. When I was a kid it didn’t really matter, but it’s like, where is the line? (Trick question, there is no spoon)

I wondered about it specifically this evening because sometimes my “daydreams” change rather abruptly and can sometimes go someplace entirely different than where I was directing it. It often connects to some of the work I’m puzzling out Over There and today’s redirect connects possibly to a fuzzy dream that I can’t remember nearly enough of. I was also discussing this with a friend and my assertion that my writing is supposed to help me with my work Over There somehow. I had an idea today but I’m not sure where that will go. Mostly it’s to deliberately write what is happening in the astral. Give it more direction than what I can typically accomplish in dreams. Perhaps trancework or meditation or something.

The other thoughts I’ve been having lately revolve around Kali. Honestly this whole thing with her is causing me stress. She’s from an entirely different culture, and that culture, the people who created it and live it, and She herself, deserve the respect of me adhering to it. The culture is so big though, and I am sick and lazy and exhausted. I can’t even worship the netjeru properly. I want to. I want to worship her and Anpu and Aset properly. It makes me sad. I feel like I can’t even try, like there’s no point. I feel like I shouldn’t even ask Her for anything.

Being sick sucks. Capitalism sucks. I spend half my day working to come home and have four hours with my kid, where I struggle to give her attention and entertainment because I’m worn, and struggle to see my physicians. And I still have to feed everyone and clean (my bathroom is disgusting and you only can’t tell because the tub is pink) and go to bed. Thank the gods Zolfyer is not a chump and cooks and cleans.

Back on topic, I know that a lot of astral work tends to start with self improvement. TheTwistedRope is currently going through therapy and that has popped up in my head multiple times recently. I don’t know what I’m going to do about that. I can’t afford therapy, I can’t afford another specialist. It’s 35$ per visit to see my specialists. I spent almost $200 in November and October on specialists. I’m spending another 35 next week. I also just don’t want to. I make jokes out of it, of having All the Specialists. I use it to empathize with patients at work and let them know “hey, it’s ok, it sucks but you’re not alone”, but I hate it. I absolutely hate it. I despise it.

I lose my mind a little. I saw a post on tumblr today that was entirely too real. A relatable post about psychosis, or something. Too many “lol yeah” reactions. And another one after that. Now, to be fair, I have a lot of friends on tumblr who suffer from dissociation and psychosis (I myself had derealization and dissociative episodes in severe depression), but it just….ironically makes me paranoid.

I know some people who have essentially done some “therapy” with their gods and I get the feeling that’s the angle one of Them (or all of Them, those three have always pushed shadow work) is going for. I know for a fact that my spiritwork is about healing, specifically healing Dapper (he’s got enough strength back to run around thank the gods), partially since he’s right in front of me. Learning to heal others tends to require healing yourself, or at least knowing where you’re broken and how you break, and I know that from watching Ekunyi do her fantastic work as a counselor.

Winter always drags up the ghastly creature of depression. It hasn’t got a full hold on me, but oh how it loves to jump up and bite me. I know that I’ve still got unhealed trauma, though part of that is I still have it inflicted on me. Being sick is a trauma in itself. I’ve never been the pinnacle of health, the epitome of stamina and whatnot, but man I miss my body from before high school. I never wept for my youth, slapped and punched and verbally poisoned out of me. Parts of my brain are still stuck there, still run away, or lash out viciously, at least in my head and behind closed doors.

My body is driving me nuts this year. Having doctors continuously tell you “I can’t find anything.” “Your tests are normal.” “I don’t know what’s wrong” (and those are the kind ones, the ones with compassion and bedside manner, rather than the ones who deliberately tell you, through your chart or implied, that you’re crazy and nothing’s wrong) makes you doubt. God and goddesses above I wonder every day if I’m just doing this to myself. Is it for attention? Would everything get better if I got therapy? Surely that’s cheaper than seeing five specialists. What am I going to do if the next test is normal too? Why can’t anybody find anything? Why isn’t any of this working?

I had two tests recently looking for vitamin deficiencies. One came back normal and the other came back low. So I’m getting treated for the low one. I desperately wished for the other one to be low too. It’s easy to treat these. It would make most of my problems go away. I’m not getting any better even treating the one. I’m crushed. I really am. Do you know how easy it is to treat a vitamin B deficiency? I could do it myself, or ask my coworker. But I’m not deficient in that, only in vitamin D, and that just requires a once a week supplement for 8 weeks, followed by a regular supplement. My life with my health has never been that easy though.

I know it’s normal, but in so many things I don’t know what I’m doing. I don’t know where to go, or what to do, or how. I see myself getting pushed to go back to school for social work, but honestly how? I cannot quit my job for school, I barely see my kid as it is and I am sick and fatigued. I often stay up entirely too late so I can spend some quiet time with Z, if only to watch some tv or listen to him rant at his games with his friends. (I find it comforting and mildly amusing most days, though sometimes I wish he’d stop playing sooner so he wouldn’t get so worked up)

I wonder sometimes, if I could just will myself better. Rheumatologist thinks I have fibromyalgia, but that doesn’t explain everything, but my neurologist can’t find anything either. I’m tired of looking, but I know average diagnosis time is 10 years for most chronic diseases. It’s only been three. It’s disheartening. I find myself hoping my gods forgive my weakness and negligence and comfort me. I don’t feel worthy of it, so I often don’t ask. I wonder what’s the point sometimes. I feel like I’m walking in darkness sometimes. I guess that’s why my daydreams are so often about a traumatized person getting pampered and loved by someone with unending patience.

I know Z would do the same, but I’ve never been very good at communicating what I need or am looking for. He’s not a mind reader. Although apparently he’s getting very good at hearing when I’m thinking! Maybe he’ll be a mindreader in another eight years!

I’m going to bed now, I’ve rambled enough and only partially got my ideas for astral crap out of my head. I used to be good at this writing thing, but lately I feel like my brain is full of heavy darkness, semi solid and hungry for my words. It makes me feel stupid and looney. Guess I am depressed after all.

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Decisions and Health Update

My health isn’t significantly worse than the last time I wrote on here (knock on wood). Mostly just more persistent, pronounced weakness, that apparently greatly dislikes stress because it often gets worse when I’m anxious and running around. More muscular pain and joint pain as well, and the numbness and paresthesia are now in all four limbs, though it doesn’t affect my arms and hands as much.

 

My neurologist still doesn’t know what’s going on, she did another MRI of my brain, and did one of my cervical spine, zilch. Now I’m trying physical therapy and trying to get in to see a rheumatologist. Physical therapy assessment posits me as having hyperreflexia, balance problems and a couple other things. It’s nice to have objective proof that something is wrong and I’m not just crazy.

 

The last month I’ve been struggling with some decisions though. I very much want to go back to school, but I’m not certain about it. I can’t do another round of health breakdown, fail/drop out. I would be crushed to face that disappointment, waste of time, energy and money, again. I really want to be a nurse, but I’m no longer confident that I could finish a program. I was thinking of doing an LPN program, they’re typically a year, but even then. I’m not even sure there’s one that I could do evenings. The ones closest to my residence are day time, and I work a full time job.

 

I started thinking about social work or psychology/counseling. Yes, they need a master’s degree, but I imagine that’s less intense than nursing school. I’ve also been doing research on being a nursing student with disabilities, not that it’ll matter if I can’t get a diagnosis before next fall. At least if I do social work I can start in the spring. I like mental health care and just helping people in general, but I also really enjoy clinical work, which is why I like being a medical assistant. I don’t know what to do or how to do it. I just really need a clear, indisputable, unignorable sign about which direction to take myself school wise.

 

In the meantime I have been considering how best to set up my house so I can start my practice back. With a toddler I want to be careful about smoke and low lying objects, but I also need it to be low spoons, especially since Kali is deserving of my attention and I’m sure Anpu has work for me to do. It’s hard trying to find resources on culturally correct, low spoons, low budget (cuz I’m broke and can’t afford to not eat offerings) worship of the Devi.

Change

I’ve gone through one hell of a rough time recently. Depression has hit me like a sack of building, to the point of a panic attack and the worst dissociative episode I’ve ever had. Then there’s the heat, and ugh, I am extremely sensitive to heat and humidity. Not only does it make me feel horribly sick, yucky and sluggish, but high heat and humidity is strongly associated with more asthma flares. Why? Well, that would be because high heat and humidity contributes to smog and increases the concentration of pollution and pollen. Pollution and heat combined are by far my worst asthma triggers aside from dust, mold and very frigid air (usually plus exercise). I can take my various plant allergies, they usually just make me a sneezy, sniffly, red-eyed mess, but that smog man, that smog.

As followers may know, I struggle with depression quite regular and it fucks me over spiritually. On top of that, I still don’t know what’s causing these neurological-type symptoms. I do know that the exhaustion of a week-long asthma flare (don’t ever tell an asthmatic that they shouldn’t be tired after a flare. ever.), the struggle of the suffocating heat and my depression has made the last week and a half pure hell. This stress has made me seriously reconsider what I’m doing religiously/spiritually. I’ve mused on it for a while now, trying to figure out where I’m going, where I want to be, and if I’m on the right path. This recent spell of trouble has really spurred me to reevaluate.

For a while I feel like I’ve floundered. I prefer more structure and it’s hard to find that in Kemeticism that isn’t the overwhelming priestly stuff. The vagueness of ma’at only makes it more frustrating. Don’t get me wrong, I love the netjer and I like and identify with a lot of the religious system. I love the mythology as well, and I love the community. I just, can’t figure out my head from my ass at home. I also like having things to do, which sounds weird from someone who enjoys worship, but I like goals and activities. Making shit up doesn’t work that well for me, as a depressed, sick introvert my brain works a little slow. Focus is hard to come by, so is energy, and clarity of thought or signal? Ha, surely you kid. Intense anxiety over my sanity is no picnic.

The other thing though, is that, despite my love of the netjeru, I can’t seem to connect with any of them. It’s not so much they don’t want me, a couple of them have at least shown interest and I could probably be confident that Aset is one I could rely on, but I really don’t feel connected to them. I understand that I’ve picked a quiet god, but I’m starting to think our relationship has changed, and we will no longer be the same devotee-devoted. I will likely still give him attention and pray to him, but I don’t think we’re the right fit for each other and I imagine he figured that out way before I did. Supposedly Kali is interested, I’ve received feedback from several avenues, but I really don’t know enough about Hinduism and lack the focus to learn what I feel is necessary to honor her properly. Further, she’s usually worshiped in a Tantric manner and I’m not interested in that form of worship. I can’t seem to find much for bhakti though, which frustrates me more. I am leaving space for her on my shrine, and if she wants me that badly she can chase me down and give the resources I need.

So now, I’m trying to focus on various questions that will help me pick a new direction. I need a focus, an aim, of what I should be looking for and learning about. I’m going to ask and answer them here, because recording things is good for me, and writing helps me organize my thoughts. Within three days I intend to change the name of this blog as well as its partner on Tumblr. As far as my tumblr goes, I mostly post social justice things to it, and so it doesn’t reflect what it was originally intended for. I will likely create another tumblog and connect this wordpress to that instead. Make no mistake, I won’t be leaving the kemetic community, they are totally awesome and I have a lot of friends there. I will just no longer identify as Kemetic unless a netjer tracks me down and drags me back.

What do I like? Well, I like reading, crochet, video games, wolves, dogs, cats, rabbits, the nighttime. Dinosaurs, dragons, werewolves. I like twilight and daybreak, sunrises and sunsets. I like the moon, I like streams, lakes and rivers. I have a love-hate with the ocean, it’s much to rough and large for me, the energy is overwhelming (and hydrophobia, fear of drowning, doesn’t help). I love plants, good heavens I love me some plants. Forests are awesome, especially mountain forests. Cool, autumn and spring weather. I like the quiet and slowdown of nature during fall and the quiet, waking up of spring. It helps that my asthma is best behaved during these months when extreme weather and high pollution aren’t usually concerns, and although I have plenty of allergies, they don’t usually make me too miserable. I’m fond of storms, but really I enjoy rain, mist and fog. It has a softness, gentleness to it that can shield you. I love after storms have passed, I’m not much for the buildup beforehand. I also like medicine, the body and helping people. I like the mind, even though it’s a pretty scary place. I like healing. I also like trying new things and thinking up wacky ideas, and I like my myths and anime. I could probably swing pop culture paganism.

What do I need out of a religious system? Support. Focus. Goals. Structure. Not necessarily church-level or something, just an established system and set of rules and guidelines to work within. Lattice-work to build on, basically. I also want a god-relationship. It’s just something I prefer, and was really a big reason I left Christianity to begin with. Another thing perhaps is energy work and other kinds of magic and spirit-y things.

What motivates me? Mostly other people. I’m not a self-starter, not for myself. Helping and caring for others is a big motivator for me. Oh, you need something? Oh, you fucked up and need help fixing it? Let me get started on that. Not very helpful when going after something for oneself is it? I haven’t yet found what motivates me for me yet, except perhaps enjoyment of a task, but even then it can be difficult. I’m really stuck in my head, I think about many different things, and I am an imaginer and worldbuilder at heart. I create elaborate things in my mind, and I can sit around all day daydreaming and creating a story, or thinking about my various interests, likes and values. INFP fits me well.

What makes me feel safe? Blankets, my sister and boyfriend. Silence and near silence. Classical music. Plants, especially trees, forests, mountains. Mist, fog and light rain. Cool weather with a soft wind. Low light, such as after a storm, at night, twilight and daybreak. I am a night owl and am often awake when others are asleep. I won’t be bothered, things are quiet, I’m not stressed by having to interact or be attuned to them. Hugs and physical affection, unless I am painfully and desperately overwhelmed. I’m a serious introvert and an empath, and tactile stimulation, auditory intensity and crowds upset me. This makes winter very hard, because the tactile stimulation of heavy clothes, shoes and coats often lowers my people tolerance, makes me tired and more emotionally volatile. Being affectionate to someone I’m close to is very soothing for me, people who know me IRL know I like hugs, poking, tickling etc, and that I can often be seen patting, stroking or touching Zolfyer. What can I say, he makes me feel safe and calm. Dogs and cats make me feel safe, pictures of wolves and african painted dogs as well. Stuffed animals.

What helps me focus? Music mostly, and talking to myself. Writing helps as well, as does crocheting. Visualization is a toss-up, but having a tactile focus greatly helps. I’m a hands-on learner, and I remember written words better than pictures or spoken words. Making my own charts, graphs, etc helps me remember and focus. Going over something with someone else, or teaching someone, also helps. I’m not a people person but helping others or working with a small group is a good way for me to work, especially if I can direct while working along them. This is why magic is more difficult for me, learning by hand, by trial and error, needing skills that aren’t necessarily tactile, having no one to help or discuss things with, etc, make it hard for me to find a system that works, especially because I’m very sensitive to the movement of energy within myself and working with energy is a bitch since it isn’t really tactile. It is, but not in the same way as, say, crocheting.

What do I enjoy with spiritual and energetic things? I enjoy the learning, the reading, the imagining. I enjoy feeling (there goes that INFP again) both emotionally and physically. The problem of course is that I’m a typical Scorpio with really intense emotions and so feeling can quickly cross from enjoyable to overwhelming and scary. I enjoy singing as well, which I’ve discovered is a good way to raise energy, though what kind I couldn’t exactly tell you. It’s more a way to focus than anything, but that doesn’t make it less valuable. I’ve yet to figure out a way I can use this consistently to my advantage. Dealing with plants is also fun.

What do I want out of a deity/spirit relationship? I don’t entirely know. I know I want a focus. I enjoy worship and veneration (gods if I can find somebody who has some hymns or something whose music isn’t lost omg) as well as playfulness. Having been with the netjer I value at least some looseness and willingness to tolerate sass and frustration. I want to feel protected, like I can rely on them to help me and be there for me when I reach out. I certainly need one who talks and interacts more. I know I need pushing, especially for shadow work, but I also need a soft touch, because I am diamond, so hard that I’m quite brittle. Or perhaps glass would be a better analogy, seeing as how you need diamond to cut glass, but it shatters quite easily. It’s forged in fire or from lightning, but so easily hurt. I suppose that means I need a glassworker. I certainly need to feel like they’re reliably there for me, fear of abandonment and loneliness is strong with this one.

What do I want my spirituality to do for me? Be a support system. Be a place I can turn when I am flailing, desperate and crushed. I need it to be reliable, consistent, motivating me to better myself. Giving me at least some direction in how to better myself. Interesting and able to be innovated. I also want to learn more about healing on various levels of energy and planes. I want to feel like I’m doing something, and not just wandering around aimlessly. I’d like to be traversing clouds for a purpose since I always have my head in them.

 

As usually happens when I have these issues, I talked to my twin. She had this to say

My intuition has been in high mode (thanks Neptune retrograde you sneaky bastard). I feel like we are looking at stuff and expecting something to crop up like Christianity, as far as having a big community and structured weekly rituals. Now, i know that you need structure more than I do, and you’ll probably do better if you can find a group that you can actually see and meet with.

I can agree with her here. I definitely do enjoy worship in groups, and having someone to talk to and play around with magic and energy work (and gods, give me feedback and practice!) would be very useful for me. Which will likely influence what sorts of things I’ll look in to, since many paths are small and don’t have widespread groups.

The other thing I realized is that the city makes me very tense. I don’t usually notice or realize just how stuffed up and tense I am until I go somewhere else, like visiting the mountains or something. It’s hard to let that tension go too, but escaping the hard, crackly, dense energy of the city for the energy of the mountains and forests is definitely a noticeable difference in my health on all levels. I’ve always loved plants, especially trees, and of course mountains and bodies of water have their own spirits as well. I imagine this very much connects with my wolfishness. My sister also mentioned that she very clearly thinks of me as a green witch, and I know how much I love water despite my drowning fear. Lakes and rivers are very awesome and quite calming, while also deeply foreboding in the way of a good horror movie. It’s an excitement, much like the night. The night is shielding, enveloping, but it is also dangerous in a much different way than the daytime. The same goes for fog and mist, weather I love, not only for being interesting and cool, but for being quiet and shielding as well, for having that same horror movie pulse that makes you take a deep breath and lean forward in your seat, waiting for the jump scare you know is coming and hoping to be surprised.

I think this will be good enough to make some kind of headway somewhere. Who knows. Any suggestions from ya’ll? I enjoy reading, so I don’t mind lots of suggestions or information.

Quiet Jackals and Silent Wolves

In January I had a very serious mental health crisis. I probably should have gone to the hospital, it was that serious. However, I am poor and black and Z doesn’t know enough about mental health and the health system to know when to take me and how to keep me safe and cared for once I’m there. It was rough. The issue of mental health in the pagan community is a touchy topic. There are a lot of people with issues, and way too much fluffy, bad abusive, nasty or ableist advice for them. There’s good advice obviously, but oh do humans love to fling shit. I avoided this issue by not bringing it up outside of my safe spaces where I’m surrounded by supportive, loving people who know what I’m talking about when I mention my suffering. Yesterday one of those people made an interesting post responding to something on tumblr. One of her suggestions for resolving the problem she discussed is what has finally brought me back to my blog.

One of the problems I had during this severe bout of depression and suicidality was paranoia. Truly I have not felt such powerful paranoia in my short life, especially towards my spiritual life. The fact that I’ve been harassed by a malevolent spirit for two or three months only magnified the issue. I couldn’t discern anything. Was I being tricked? Was I being attacked? Is this really Dapper or Anpu, Kali or Aset? Even though I cleansed and warded and purified, was my house still vulnerable? Was I? Did I cut the link the spirit was using to hurt me? Were Z’s nightmares tied to this? Was Dapper ok? Was any of this even real or a very long lasting and elaborate delusion? Was I sicker and crazier than I ever thought I was? What if I had really done nothing but hallucinate, or worse, I’d been abandoned?

I can attest the post-breakdown Fallow Time is one of the most difficult and agonizing types of Fallow Periods. It felt like everything was wrong, like nothing was real, like I couldn’t be sure about anything. The fact I do derealize when my depression is very severe made it worse. Even the slightest nudge or attempt to contact was muddled and confused. I couldn’t figure out what anyone was saying or what anyone wanted, if I was even sensing them, if I was doing it correctly (I know, silly to think you could feel something incorrectly, but you’d be surprised if you don’t have a sensory issue or mental health problem and have a firm security in your perception of sensations). One thing that still pops up is whether I’m actually even wanted or poking around at the “right god”. Does Anpu really want me? Am I bothering Him or being useful in any way? Should I reach out to other gods? Am I even actually sensing other gods? Do they want me? Would any of this shit I’m thinking about doing be even the least bit useful or beneficial?

Why, oh why, dear gods and goddesses, was it so. fucking. unbearably. horrifically. silent?

Not that it mattered that it was silent. In the intensity of my fear and paranoia that I was being tricked or suckered by an opportunistic spirit or the bitch demon who attacked me made me shove away anything I did sense in abject panic. I didn’t (and don’t) know if my wards are anything more than pathetic little screens, with the gracious help of three and a half plants (cuttings of two of the plants, still just branches with little roots) and a dinosaur. I don’t know if my cleansing and purification, all the magic and heka I attempted, actually worked and will keep that spirit bitch away. I don’t know if her hold is broken. And for whatever reason every divination I’ve done (asked for from others, and not done for myself) keeps mentioning being wary of new help from nowhere and new people.

While my panic has settled down immensely, the worry and concern is still there. Especially because I still don’t know what to do about Anpu. See, it’s not that he’s ever mean or anything, nothing of the sort, I just don’t know what to make of him. I get this sense when I look at him. It isn’t anger or rejection or anything clear and obvious, it’s simply a very uncomfortable and confusing sensation. It incites worry. More like he’s looking at me, wondering what exactly to do with me. I’ve had this feeling ever since I started down this path, and it has made me question my path choice just as much as my god choice. However, I always come back here, because even though plenty of religions make sense to me and have elements I’m looking for, this is the one that works, sorta, and I’m trying not to give up or dish out when there isn’t precisely anything wrong and nothing else is reaching out to me the same way.

I know that Dapper doesn’t come as close, probably worried that his presence is bad for my health or could adversely affect me or attract attention. His concern has some rational basis, I’ve found that I cannot try and actively astral anymore and need to be wary of physical-astral contact or connection. It seems to aggravate whatever it is that causes me to twitch and shake even a year past when I initially went to the hospital. Magic on this plane is also a little harder and wears me out more. Not to mention, Dapper does have enemies and interacts with less than savory characters (his job is not an easy one) and is very strong. His weak, mewling human is an easy target. Especially easy when she can barely control any magic, astral transformations or effectively ward. I wouldn’t be surprised if Anpu asked him to stay back for a while as well.

I mention all this to a purpose, not simply to inform or lament that my mental health sucks (which it does). My friend’s suggestion in that tumblr post was that, a way to help others is write to them about your experiences and how you deal with it. Help others learn to cope and change the narrative. Unfortunately I can’t say I have any sage advice, since I’m only just pushing past the giant wall in my spirit between me and my shrine and still struggling to figure out what I do next. But, I want people to know they aren’t alone in their suffering at least, that I understand such problems, such pain, down to my bones. Heh, even my shadow shudders in pain at times, and I feel my astral wolf self bare fangs and growl. She doesn’t like the pressure and agony of depression either.

Plenty of people will tell you a truth, that it is possible to get through it, that things change and get better. I also understand your truth, that change is a long time coming more often than not, that relief is usually difficult and very incomplete and often rife with fear that it will break again, which it usually does.  I understand the truth that knowing relief will come rarely brings as much hope as we’d like, or eases the stranglehold of our broken spirits. We know it’s supposedly temporary, that our minds are telling us lies so powerful it shakes our bodies, our faith, our souls. We know many truths intellectually. We also know one particularly bitter truth, and that is that the lies feel so intense, so true, that it can be easier to believe them sometimes, or to ignore the truths of hope, because waiting for that hope to manifest is unbearable. Because being told those truths can cause the clamp of our illness’ lies to worsen, because sure we know we’ll get relief in theory, but when will it come? And when it does come, will it last, and will I survive to get there? That is one of the hardest questions to ask, because it is so difficult to answer.

It sucks. To put it far, far too simply. The fear hurts. The doubt hurts. The stifling silence definitely hurts. But you’re not by yourself. Even though the tension is suffocating, I’ve got a cozy blanket and your favorite hot drink. I’ve got your pet and my pet and we can watch them play. Tell me your favorite internet thing and what encouragement you really need and I’ll always show up when I see you suffering with those things. You’ve got a friend here. Misery loves company for many reasons.

Maybe we can try and come up with ways to hold out until the crashing stops together. Or at least I’ll crawl out of my hole and remind you that I care, that I appreciate your presence. That even if I don’t say much I’m peeking out from under my rock, looking at you with the eyes of a kitten, wondering if you’re ok, if you need me to jump out at you and half-startle you into a smile and wrestle with your feet. And if you do, I’ll bring damn near anything I can possibly bring to give you even a smidgen of relief. So, there’s that at least.

On Being Chronically Ill, Black and Poor

Today isn’t a great day for me. Really, the whole week hasn’t been that good, and December was a terrible month too. Actually, scratch that, 2014 was a positively awful year for my health. It’s not looking too good so far for 2015 either, but I’m trying to be hopeful.

See, I’m a Chronically Ill Person (CIP). I’ve been a sensitive, sick person most of my life. I always got the virus or germ going around as a kid, god forbid it was a stomach bug or a respiratory infection. Seriously, have you ever had a cold and asthma? No? Let me tell you, it’s terrible. What is normally a three or four day adventure in illness becomes a two week adventure with the chance of a hospital visit when you add asthma in. Flu or bronchitis? Better bundle up until you can’t move to protect your chest from the cold weather, because even walking pneumonia (aka, pneumonia lite) can hospitalize you. Be prepared to be so high on albuterol, cough medicine and prednisone that you shake in your sleep and cough until you vomit (I’ve done both). That is, if you can sleep, because sometimes you’re too jittery to sleep.

And asthma is actually the one problem I have that is the most controlled and least troublesome. Mainly because I’m supremely used to it, and there are a lot of resources and knowledge at my fingertips. Except medication, that shit is expensive. I manage my asthma on the least expensive vitamins I can get (ionic minerals like magnesium, calcium, selenium and zinc are good for asthma), caffeine, and judicious use of “fuck walking up this hill right now.” Also, by least troublesome I mean that I am used to it and handling it, not that it isn’t severe and ridiculously reactionary at the most random times (seriously, what bothered me last week may not bother me this week, but I’ll have an overblown reaction to something I’m constantly exposed to out of nowhere). Fun shit right?

But that is not the least of it! My life would be much easier if all I had to deal with was asthma. No, I have to deal with lots of other chronic health ailments. The fun life of a CIP is that, very often we get avalanched by new shit. Oh, you got used to asthma and chronic insomnia? How about worse asthma! We’ll throw in depression and anxiety too, and interpersonal issues! Worse insomnia! Crippling exhaustion, joint pain, muscle pain, brain fog, dizziness, even worse depression and anxiety.

Some of my issues improved when I graduated high school. Asthma improved, and the horrid exhaustion, brain fog and dizziness hadn’t started yet, those actually started in 2010, along with palpitations (which are sporadic nowadays) on a regular basis. My health did not improve, it hovered for a while from then to 2012, when my mental health took a dive. My health improved some in 2013 when I partially moved out, and initially improved when I completely moved out in 2014, however it took another nose dive close to spring. I ended up hospitalized with “atypical, seizure-like symptoms.” I was hospitalized for five days, had two CAT scans, an MRI, an EEG and several blood tests. I was discharged with a diagnosis of psychopathic movement disorder (a nice way of saying, your brain made you sick, aka, you crazy). I still have muscle spasms and twitching, sometimes that disrupts my strength and ability to walk unaided. Did I mention the dizziness, brain fog, nausea, abdominal pain, and such? Feeling lightheaded, unbalanced (like I could fall over or collapse, but not dizzy), weakness (generalized and specific), muscle and joint pain, and what is probably nerve pain? Yes? Good. Let’s not forget, that despite cold weather, especially cold, dry air, being a serious asthma trigger, it is the only thing that provides even a modicum of consistent relief, especially if I was just overheated, which I get easily. And being overheated makes me feel infinitely worse and always has.

See, but I can hear people already. Go see a doctor. Get a new one. Go see a specialist. Go to therapy (cuz all depression and anxiety everywhere always responds to that). I’ve done all of that already. I’ve seen five doctors in the last four years (we’re only a week into 2015, so I’m still operating from 2014), which is actually a miniscule number compared to what most undiagnosed CIP’s go through. I’ve seen five therapists. The issue, is the matter of money.

I live in America, the land of Fucking People Over, especially poor people, like myself. This means that I have limited options for receiving low cost health care, if I can find it, because there isn’t universal healthcare and I have shitty insurance. Insurance companies hate me, because they hate all sick people. They like my boyfriend, because he’s rarely sick, and only went to the hospital over a particularly bad stomach virus, because I forced him to. I have the hospital I went to calling me three times a week to collect the 500$ I owe them because I don’t even have 20$ to get a new inhaler. So, I’m actually in physical danger of another hospitalization (because asthma can kill you! Fun shit right?) since I can’t afford a basic medication. Oh, and this was after my insurance initially denied to cover my hospital stay and denied covering the ambulance. That would have left me thousands of dollars in debt, for a five day stay that yielded absolutely no viable answers or treatments as to what the fuck is wrong with me. Did I mention the ambulance was eight thousand dollars? Yes, a rolling box that took me from one hospital (the one near my house), to the hospital I was admitted to an hour away, cost 8,000$. Our car doesn’t cost that much in a year, even with gas, maintenance and insurance thrown in, and it’s a new Volkswagen. I’m twenty-three, and they were going to leave me with as much debt as my school loans because I got sick.

I’m a student, I’m black, and nobody wants to hire me to work. I cannot afford to visit doctor after doctor, or even try new medications, supplements or even change my diet. I want to change my diet, I don’t have enough plant food in my house. I love fruits and vegetables. I can’t afford to buy fresh veggies, and I sure as shit can’t afford fruit. I can barely afford meat. If Zolfyer was willing to be vegetarian I could stretch the budget more, but he needs calories and fat, because he’s a healthy, slender athlete and I would like him to stay the first and the third, and he would like to gain weight. I can’t feasibly add more fresh, whole foods and variety to my diet. I can’t plant a garden, I can’t afford pots and soil and seeds because we live in an apartment. Being poor sucks ass. I don’t want to be poor. I’d like to work, but my resume is skewed towards childcare, and because I don’t drive and am a student, no one will hire me. Most decently paying childcare jobs need very specific hours, and require a car, luxuries I don’t have. I can’t afford a second car (we really can’t afford the first one, but because we’re young and have no credit history, the only place, literally the ONLY place, that would give us a car was Volkswagen, and they made us take a new one and get super insurance on it, and Z absolutely needed a car. It was impossible for him to keep his job without it) or the scooter/bike I would be more comfortable learning to ride.

I desperately want to get better, but I can’t even afford to improve my diet from cheap, boxed and processed foods to the more expensive, healthier options. Good food is for people with money, I need to fill my kitchen on 100$ a month, for the whole month. Getting diagnosed and treated is also for people with money, because I can’t afford a copay at my doctor, or a specialist. I can’t afford to shop around for a doctor or a specialist. I can’t afford to receive tests, nor can I afford medications. I simply, can’t, pay for it. The only reason I have a phone is because someone else pays the bill. Z’s phone is about to get turned off. We’re praising the gods that gas has gone down, because now we can fill the tank on 25-30$ instead of 40-45$ We’re happy that my transferring to a new school means I won’t need a transpass or tokens (because public transportation).

Oh, and in case anyone was wondering, I’ve tried all the usual avenues before now too. I’ve tried eating healthier when I could afford it or was living at home. Didn’t work. I got a ton of tests done. Told me nothing. I’ve had ultrasounds and scans of my internal organs and brain, normal. I’ve tried working out, made everything, including asthma, worse. I’ve tried herbs, supplements, yoga, prayer. The only things I haven’t tried are osteopathy and other body work, like acupressure/puncture and massage. I’m sure you can guess why I haven’t, it rhymes with runny. Oh, and cleanses, also because of that funny “m” word and also because I’m not in the mood to sit on the toilet for days.

Let’s move on to the next part of the title, because I’m sure you’re wondering what my being black has to do with any of this. Well, the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services, says:

Racial and ethnic minorities are more likely than non-Hispanic Whites to be poor or near poor. In addition, Hispanics, Blacks, and some Asian subgroups are less likely than non-Hispanic Whites to have a high school education.

Disparities in quality of care are common:

  • Blacks and AI/ANs received worse care than Whites for about 40% of measures.
  • Asians received worse care than Whites for about 20% of measures.
  • Hispanics received worse care than non-Hispanic Whites for about 60% of core measures.
  • Poor people received worse care than high-income people for about 80% of core measures.

Disparities in access are also common, especially among Hispanics and poor people:

  • Blacks had worse access to care than Whites for one-third of core measures.
  • Asians and AI/ANs had worse access to care than Whites for 1 of 5 core measures.
  • Hispanics had worse access to care than non-Hispanic Whites for 5 of 6 core measures.
  • Poor people had worse access to care than high-income people for all 6 core measures.

Few disparities in quality of care are getting better:

  • Fewer than 20% of disparities faced by Blacks, AI/ANs, Hispanics, and poor people showed evidence of narrowing.
  • The Asian-White gap was narrowing for about 30% of core measures, the largest proportion of any group, but most disparities were not changing.

That’s what being black has to do with it. Along with the fact that I’m plain disbelieved. My doctors don’t believe me when I tell them how severely sick I am. They look at me (especially as an overweight asthmatic) and don’t believe that I’m sick without cause. Being female doesn’t help, since females are “hysterical” anyway right? They just tell me to exercise. That’s it. Eat less carbs and exercise. It’ll magically give you more energy, and if you tell me it doesn’t work or makes you worse, I’m just going to tell you to keep doing it, because “it always feels worse before it gets better.” Or, “it works for my other patients.” “I have asthmatic patients who are athletes, surely you can take a walk around the block every day.” No, I can’t, I live in an unsafe, polluted neighborhood because that’s what I can afford, and my marital status, credit, and blackness aren’t used against me. I’m also horrifically paranoid about getting attacked or kidnapped and who wants to deal with getting catcalled? So no, you myopic bastard, I most certainly cannot walk around the block as a pollution, weather, and exercise sensitive asthmatic. Not when I can barely make it up the hill that I walk up every day for months. Oh, I thought your body gets used to exercise after time. WHY AM I NOT USED TO IT SIX MONTHS LATER THEN?

Sorry, touchy subject for me. Still, I find that I really can’t even fully express my symptoms to my doctors sometimes. If they don’t start talking over me as soon as I mention my pervasive exhaustion, they blow off other symptoms. I can’t even get to articulating some of my more alarming symptoms, especially the mental illness ones. Every physical issue I have has some “explanation” and well, my tests are normal, so it must just be in your head or not as serious as you’re making it out to be. Except it’s not, I know what’s in my head, and it’s a pretty scary place by the way, but I don’t know how you’d react to exactly how scary it is, and you’re questionnaire doesn’t ask or is too specific (or not specific enough), so I’m not going to tell you doctor. As well, I know these symptoms aren’t in my head, because sometimes when my mind is being a loser, my body gives me a brief break, and vice versa. Besides, I can’t afford a worse diagnosis than depression and anxiety, not when I can’t afford an inhaler, because the closest pharmacy wants 50$ for what should be a 10-20$ prescription, much less whatever it’ll cost for you to give me the crappy SSRI or anti-psychotic instead of the shiny, new shit you’ll give to your skinny, white patient which are still expensive. I can’t afford to have to go through multiple medications to find one that works either. I can’t afford it because it means my insurance company will discriminate against me even more. I can’t afford it because, even though it would probably benefit me to have such a diagnosis to access services, I don’t have the energy or patience to jump through the hoops to get those services. Nevermind that if I can jump through all the hoops, well I’m not quite as sick as I am trying to make out to be am I? Oh, silly me, it wouldn’t matter since services discriminate against me as a black female too. Heaven forbid I’m a drug-addled welfare queen! Seriously, having kids fucks you over only slightly less than not having kids when you’re seeking assistance, especially considering that many states require you to jump through hoops of flaming shit in order to keep benefits, and that is extremely difficult with children, but without children you might not qualify at all, or qualify for less than you genuinely need.

I say all this, to complain about being sick. I’m extremely frustrated with my health, especially my mental health, and my inability to even attempt to fix it. Meanwhile, my health is hobbling my efforts to get the resources I need to try and fix said health. Fun times as a sick person.

Recent Developments

I am on Spring Break this week, which is good because I am tired. Tuesday evening I had a bit of a breakdown. Essentially I’ve been diagnosed with another psych disorder and was hospitalized for about five days. I’m home now, but it wasn’t fun being in the hospital. I have a bunch of follow up appointments to do and still have to deal with school. Once again, lucky for me this happened right before spring break. I still have to catch up on work, which is ok for now. My new challenge is to get a handle on my anxiety so this new turn in my life doesn’t break it apart. Anyone who suffers from anxiety knows what a struggle that can be at times. It’s hard not to get overwhelmed.

On a different note, Aset is back. She practically zoomed into the hospital room when Dapper finally found Her and told Her what was going on with my health. Ironically, it is now Anpu that is distant. I don’t know how that happened, all I really remember is all three of them being nearby while I was half conscious from the medication they gave me in the hospital. Specifically, I remember Aset running into the room and holding my hand, while Anpu and Dapper stood back. I’m pretty sure she turned around and yelled at Anpu, but I don’t know much more than that. I also had a dream-hallucination-whatever. In it a man with red hair and matching beard, styled very medieval-y, and in armor walked by me. He invited me to follow him and I did, to a humongous arena. The stands were full of people who were essentially mannequins. They all looked the same, especially the men, who were decorated in all manner of fedoras and vests and sports coats. Although the crowd was cheering wildly, and the stadium was literally brightly lit from the people as much as the sun the man wasn’t happy. He wasn’t unhappy though, but his armor shone and sparkled. I made mention of the ridiculous fanfare and realized this was no netjeru. He drew a large and glistening sword and I made more sarcastic remarks about fanfare. He rolled his eyes and made agreeing comments about how annoying this all was.

We made our way to a park, him all shiny and exuding light with his armor and sword, and he sat at a bench near some trees and a dark, narrow, overgrown path. He leaned back and sighed, swinging his arm and sword over the back, where their light was greedily swallowed by the shadows and darkened.

Apparently he walks in the light and kills in the dark, but sometimes he walks the dark and kills the light. I have no idea who this is, but I do know it relates to Zolfyer in some fashion. There were other images, including me “casting a spell” to create a barrier for myself. I very vaguely remember Z holding my hand, and other people were in the room as well, and I did the same thing, literally whispering gibberish to cast a barrier spell to protect him. He said that he was confused about that, because he had heard me muttering in a sort of quiet singing and couldn’t figure out if I was trying to say anything. I actually wasn’t. Even in my delirium I knew I wasn’t making sense, but there was still purpose and power behind it. I also yelled at something to quit walking and running around my room. Apparently I yelled that out loud because Z confirmed it.

I got back home on Saturday and slept for a good while. Probably a total of 12 hours, though not all at once. Sunday had my nephew and sister over with my mom. That was great, though I was still tired. Sunday night was fine, and it included Dapper’s daughter telling me I should bring Z back to play because “he’s funny.” Dapper stayed in the room for most of the night. I had a strange dream involving the Simpsons (a show I despise and never, ever watch) and this quest to get glass paperweights that smoothly magnified words. They were from the dollar store and I have no idea why I was so interested in having them. Nothing I was reading or trying to read was illegible without them. I also bought a hell of a lot of candy in this dream. Every time I was out I stopped in a store and bought chocolate and little, random things. This all was occurring because I was taking some sort of adult class. The most confusing thing had to be a particular person being in this class with me. She gave me a Country Crock container (yes, I’m talking about the butter brand) and told me this kickass quote that was from Aset. It had to do with being one and Her caring about me. I have no clue, dialogue is always lost, especially since I went flailing about without writing it down. Anyway, this country crock container is empty, and when I open it I can hear Aset’s voice and I realize she’d like a prayer-offering box like the one Anpu has. I write, sloppily, “For Aset” inside of it with a Sharpie and have held it since. Something happened involving this awkward Simpson’s theme and then I was in a forest.

A small creature (a tiny little Charmander) was being chased by three adults and their fully evolved dragon types (Garchomp, Tyrannitar and Salamance). They were chasing it because, and I figured this from a sign, the fire types in the forest needed to be culled (and preferably exterminated) because there had been a lot of fires. One of them basically used Surf and the poor baby Charmander got swept up and slammed into a tree. I caught it and ran off with it, finding a random ass table in a clearing (or maybe I manifested it) to try and revive it. For anyone who doesn’t know anything about Charmander, if the fire on its (and any of its evolutions) tail goes out, it dies. It’s a really cruel and painful way to kill it, especially a Charmander smaller than an infant. It was gasping as its tailfire sputtered out and I put all of my focus into relighting its flame and reviving it. I barely managed to save it and it gasped and coughed. I cradled it as the three men and their dragon pokemon came upon the clearing. I commanded my Pokemon (a Meganium) to kick their asses. It did, using a move called Dragon Tail (dragon types are weak to Dragon types) and by slamming them around with Vine Whip. My Meganium also attacked the men and then flung them all off into the forest. Did I mention that I wasn’t actually “me” in this part of the dream?

I don’t even know guys. For those interested, the Simpson’s nonsense in the dream revolved around this thought that Homer was a twin whose parents neither cared nor were interested enough to even give them separate names. Even their middle names were the same. It made no sense and was more than a little creepy, especially since the twin Homers were talking, naked infants and I had to find them after they somehow ran away. It was so awkward. There was also a short bit about Scratchy (and gods I really hate the Itchy and Scratchy Show) and that happened right after I saved the Charmander. My brain is so confuzzled. In the meantime, I’m just trying not to literally drive myself crazy again.

Recent Life

Zolfyer says I don’t write enough about “normal” stuff (ie him, but he’s just being spoiled lol) so here I am! Currently our life is all over the place. Two weeks ago we went on a great vacation with our friends to the Pocono Mountains here in PA. We were out near the tiny town of Tioga (it is worth noting that there is a Tioga town, county and a Tioga neighborhood in Philly, we were in the second). It was really fun and much too short. We spent an entire day hiking by accident, we left the house at 2:30 and got back at 7 and that was after incurring a ride from a very nice gentlemen.

The hike started out going down the ridgeline behind the house to follow the creek up into the valley and after a couple miles of enjoying the water and rocks and forest our path became blocked by several fallen trees that would be unsafe to climb. I’ve rarely been so attuned to the feelings of flora before. I love plants and generally take the time to pay attention to their energy and what they are saying to my intuition, but usually it’s still a bit unsure and blurry, but not out there. It was extremely refreshing as well, the air was clear and smooth and chilled. I was worried that the exertion would set off my asthma, but it only got upset later in the hike after we were all tired and experiencing stress. But yeah, trees and cool air.

When we got blocked up by fallen trees we decided to climb the steep ridgeline because we were fairly certain that the field we could see was a landmark. It was not extremely challenging but it wasn’t easy either. We all ended up using a tree to help us get up because its roots were strong and stretched down the steepest part of the path. Grabbing that tree root was a little startling. I’ve rarely had such a clear communication from a plant, a sensation of “hold here, I’ll help, grab me, like your friends.” It was fairly baffling but very nice. Probably the nicest tree I’ve met so far. After climbing the ridge was when things started to become a little confusing.

We didn’t walk through the field because it was someone’s property, a cornfield still growing, but we walked along it. At a certain point the path naturally moved away from the creek and the ridgeline and we walked through brambles and berry plants. Those guys had thorns and they tried to bite me, probably for wishing that I could eat their berries safely. Nothing but crotchety plants from there on out. We ended up coming upon a meadow and it was amazing. I’ve never seen a meadow in real life, and the plants were so tall that we couldn’t reasonably cross through it. Going around it wasn’t easy, there wasn’t much of a path so it was rough going through the trees and such on the embankment around the meadow. Eventually we saw the creek again but the ridgeline was far too steep for us to safely climb down, so we did our best to skirt the meadow’s edge. Eventually we heard the sound of cars, which meant a road and went in that direction. Of course that meant walking through the meadow.

Now, the meadow was a little tamer where we were, but it still took us like thirty minutes to fight through the plants because they were still quite tall and very densely packed. Zolfyer has pictures on his blog of the meadow and in the meadow when we were halfway through it. On the other side of the meadow was more forest that was not easy to traverse. Low-hanging, sprawling branches and roots that can trip and twist ankles made it slow going to move safely. Two of us tripped and a lot of the branches were smacking and catching and slapping. We were still having fun, but it was still a bit frustrating and annoying. My friend and I are also fairly certain we walked through a faerie door. There were two trees making an amazingly perfect arch, like a church door and we walked in between it. When I walked through I had the matter of fact thought that I was pretty sure I walked through a faerie door.

We got a bit turned around after that, even seeing the meadow again. Eventually we made our way to a cornfield and we chose that direction based on the fact that we could see houses and telephone poles in the direction, meaning civilization and a road. Even the cornfield was a bit annoying. We had to follow a tractor trail in order to not walk through the actual corn and eventually made our way to the road. Then we had no idea which way down the road to go. Later we would find out which way was best and exactly how far we had gone. We had walked miles and all the way up the mountain and to the other side. It was spectacular and impressive just how far we’d walked. We were sore for the next three days lol Trying to figure out the direction for the road was when it stopped being fun. Only three people paid any attention to us calling out for help and direction and we don’t think they really knew what we were asking them to clarify. We ended up walking two miles the wrong direction and when we tried knocking on a few doors for help we were completely ignored. One woman even came out of her house and saw and heard us, but just called her dog back in and left us high and dry.

Eventually we managed to figure out on our own that we should probably go back and by then we were unhappy and tired, but an older gentlemen was outside as we made our way back and was able to help us. He gave us a ride too and we went to bed pretty early that night. It was fun and frustrating.

The rest of our week went pretty smoothly. I cooked some kickass mac and cheese, we made strawberry mojitos and had great fun with fire. We were kinda commanded by our friend’s parents to burn firewood and by proxy make smores. The smores were especially delicious with dark chocolate. We also watched Rock of Ages three times, all three tipsy or half drunk. All of us grew up on 80’s music so we sang loud and happily to the movie and enjoyed each other’s company. We also had a “gamer day” where we all sat around playing our video games in the same room. Overall it was very relaxing.

Well, except for the part where our car’s radiator blew up at the bottom of an exit ramp. Not literally of course, but there was a huge crack in it and the engine died from extreme overheating. Our friend ended up having to cover us for a nearly 500$ repair. Thank the gods that the headgasket didn’t go, otherwise the car would’ve essentially been totaled. Bob is 14 and a discontinued line at that, fixing the headgasket would’ve been more than his value. He’s doing alright now, so here’s hoping he continues doing alright until we can afford to fix him more or reincarnate him.