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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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.