Tuesday, December 5, 2017
Having a chronic illness is a bitch, but twenty years or more of having a disease can lead to more questions than answers.
Autoimmune diseases, like I have (psoriasis and psoriatic arthritis), unfortunately travel in packs. Which means, sucks to be me, I may have more than one, like Lupus, and other more awful things than what I think I already have.
However, a new diagnosis, would in fact, explain alot. See, I've been on most of the biologics available on the market and none have worked. Some have made be feel better for a few months, but after that I am in pain again and my skin gets worse. I'm having that problem now with biologic number five; Cosentyx. Cyndi Lauper takes it. She's old, and it works for her, but her Queen's accented ass can still get up on stage and do what she has always done. I had to give up my musical career due to my illness, I'm 32 and need a cane.
Cosentyx was supposed to be the answer to all my prayers (they clearly don't know what I pray for), my swelling was supposed to disappear, my skin was supposed to completely clear up, I was supposed to drop down fifty pounds and still maintain my 38K's (not really, but you get the picture). Problem is, my skin is getting worse and I'm in fucking pain, and I lie about how much pain I'm actually in. OTC's don't work, and Percocet just puts me to sleep, so I'm assed out. My leg bones are grinding together. It's the most unpleasant feeling in the world. I'd rather be in labor and giving birth because at least I know it will end and I get a baby out of it.
I was promised a miracle with every single drug I've ever been on. So what if this whole time, I've just been on the wrong meds for the wrong disease? There is no doubt that I have psoriasis. But what if on top of my arthritis, there is something else? Something that would explain the severe pain and muscle weakness as well as all the other symptoms I have?
Luckily I may get that answer in two weeks. My Dr. took eight large vials of blood to send to the specialist laboratory. She's testing me for everything, from Lupus to Fibromyalgia, Cancer and Lyme's. I even asked her to test for Familial Mediterranean Fever just cause I'm Greek and many of the symptoms fit (it's just the drugs for that are literally deadly).
I'll know in two weeks what the verdict is. If nothing else is there, then I switch to Remicade which is a dangerous drug that treats cancer as well as causing it. For that drug I must go to a special office to be monitored for three hours after the infusion because the side effects can kill me. Such fun.😒
Part of me hopes there is something else there so I can finally have an answer and see if other drugs will work, the other part is scared and wants to be held and cry because it's all not fair.
In the meantime, my Dr. advised that I go gluten free again, this time for good (pasta is so delicious, but I must remain strong). Then it's a wait and see game. I'm just so tired of being tired and sick.
It also sucks that in the what I know helped me in the past I can no longer afford. Acupuncture and herbs helped tremendously. But it's expensive. Cosentyx costs Medicaid 10K per injection, I don't pay a dime, but it's still way more expensive than if I were on holistic care. I'm also interested in CBD oil. In NYC, I more than qualify, but, it's 100 bucks a week, plus the cost for the card and doctor's appointment that Medicaid doesn't cover. I wish they covered the more natural approach, but I'm grateful that I don't have to pay for anything, other wise I'd be a withered lump in bed unable to even walk.
So, I bid you all goodnight. And wish me luck. For those of you who are ill, don't ever give up, fight for your well being, especially the cost involved. And also fight to legalize marijuana and other plants that can be made into meds. We need more sustainable options that won't kill us.
Tuesday, November 28, 2017
My Dearest Shadow,
Today is five years. Five years since we first fell in love. Five years, since that fateful day at The Met. To this day, no matter how many times we try, we can never find that Egyptian statue where energy surged and the desire to be in your arms over took every fiber of my being with the unbridled need to kiss you.
Five years later, and I still feel that spark, that electrical charge when I'm near you. Five years, and I love you ever more.
We've been through hell and back together, I could have lost you when you fell. I'm so glad I didn't. We've been through more sickness than health and more poor than wealth, but through thick and thin, I've always had you.
You're the first person not to truly care about my illness, to take my invisible disability seriously, and still love me for the person I am.
I know things haven't been easy, and I am often disheartened, but it's you who has always told me that everything would be ok in the end. And I believe you, even though I don't show it.
It's taken me so long to get used to our new normal. When I wrote you those notes for court about all the things we were able to do as a couple, I cried. I miss taking walks with you, having picnics in the park and trying to sneak artisanal beer into the water bottle. I miss how we used to be, able to walk up the mile long path to The Cloisters, or having the stamina to galavant across the city at midnight, relishing in it's nocturnal virility. Seeming to thrive on and be fueled by its effervescence.
Now, things are slow, languishing almost. Days spent inside, watching various documentaries, or discovering new shows. You'd cook the most amazing breakfasts for us, and I always made the Nescafe in matching 8oz cups.
Our new normal is also the small human we made together and prayed together for. I couldn't have asked for a better father for our daughter. I know that she's the most important person in your life and I love watching you dote on her, amazed at how fast she grows and learns, finally able to say "I love you" to her daddy.
It's been one rocky road my dear, but I would never turn around to take the paved one. This road is our road, and we laid it brick by brick. I used to tease you and say that everyday I grew more fond of you. Such an odd thing to say in the 21st century, but I stand by my choice of words. I do grow more fond of your each day, I love you, forever and always.
Sunday, November 26, 2017
That's right kiddies, keep those toads hidden away!
Parents, they suck am I right?😝 I'm a mom to two kids, and my oldest knows he doesn't have to hide anything from his mama. When I was growing up however, it was a different story. My mom didn't want to hear about Witchcraft or Wicca and my father would have blown a gasket.
Currently, I live with them again due to my disability, which means most of my heavily heathen ways must be kept under lock and key (it's still all in storage).
What I do have out is inconspicuous and does not overtly scream to them that I'm a Witch (old hag maybe, but not witch.😉)
Yes it's terrible that you can't be free, your true self and out of the broom closet so to speak, but this is for your parents sanity and more importantly, your safety.
Here are some tips I'd like to share:
Don't dress Goth.
👿 This screams devil worship and what not. Wear a black t-shirt or paint your nails, but don't over do it if your parents hate it. If your parents don't care, well then, more black lipstick and piercings for you!
Don't set up an altar.
🎎 I have a few crystals out, and my calendar. For some strange reason they don't notice my Llewellyn's Witch's Calendar. Keep things simple and don't put up a statue of the Horned God if they're going to yell at you or worse. I would love to set up all my stuff as you see it on the background of this site, but they'd throw a fit of toddler proportions.
Keep your room clean.
🚯 This serves several purposes. (I know, I'm such a mom!). First, this gives your parents less of a reason to enter your room and look around, second a neat room will be able to hide a few more witchy items on a night stand or bookshelf, especially if the floor is spotless and the books are aligned. Third, magick can't be done in a cluttered space, trust me. Fourth, it'll be the only way you can properly put up wards to guard yourself and your room.
Don't purchase expensive tools.
🔪 I know it's really tempting to drop 100 bucks of your birthday money on that crystal wand or hand carved athame, but you don't need these things for an effective practice. Let's say your parents raid your room and throw it all out, that's tools and money lost. So save these purchases for when you're on your own. The stuff on my altar table above has been obtained slowly over the course of many years since I was 18, with money I earned.
Keep a nonchalant Book of Shadows.
📒 A simple three or five subject spiral notebook or even a binder where you can move pages is perfect for this. Don't decorate the outside of it, hell, label it math or something. Inside, go to town. Trust me, no parent is going through their kids math notebook. This is going to be the bulk of your magical training, worship and practice. For right now, don't keep separate notebooks. Do spells, dreams, tarot, tools, herbs, everything in here. Draw your dream altar, list tools and prices for later on. Work your magick in here too. Keep track of what books you've read and which titles you want to. This notebook is your current life as a witch.
Keep what you do have hidden.
📦 As a teen I did have a few things I saved up for, like tarot cards and a few other trinkets. So I made myself a trinket box. Keep all your stuff neatly tucked away in a box under the bed or on a shelf. Right now I have some things in a simple plastic box from Dollar Tree. It serves it's purpose well, high on a shelf where the baby can't get it and it's so mundane that no one thinks twice. Currently it has the parchment we wrote our Beltaine wishes on.
Those are my major tips out of the way. Now on to something a little different.
Let's say your mom and dad are ok with you exploring a different religion and want more info from you because you know us parents are terrible at internetting. Most of you guys are coming from Christianity (I have yet to meet a Jew turned Witch, please comment if you are, I gots questions!). So here is the deal, we all know the Jesus horn tooters really took Pagan practices and changed some names and dates, it's like bootleg Versace. When they ask you about it, don't enlighten them, instead bring up Christian Wicca. Now, I don't follow this myself but I can give you the jist of it. Basically, what you're going to lie about (or not if you choose to follow Christ, he's cool in his natural Jewish form) is that you are still engaging in a relationship with Jesus, but you are choosing to worship him in a different way, through nature, not church. Got it? You LOVE Jesus, he's your man, wine and bread and all that jazz, but there are other ways to commune with him. For example. Why do you need a priest to light candles and incense if you can do that all by yourself and talk to the Lord? Hmm?! Don't mention circles and cones of power. Keep it plebeian (that's such a great joke! 😂). See what other fibs and creative lies you can come up with, there are so many parallels besides my example.
As for those of you who are flat out allowed to do and worship whoever and whatever you want; awesome. You have excellent open minded parents. Be that person to your kids too, and keep passing it on. There are too many stigmatized humans on this planet.
Anything else you want covered? Specific answers to your particular dilemma? Comment below or in the communities. Mama Spiral is here to help.
😂 Plebeians! Seriously look that up. So funny.
Wednesday, November 22, 2017
I shouldn't be writing this. It should be self explanatory, but trolls aren't exactly the brightest crayons in the box.
Many Pagans practice Witchcraft.
Some, are Wiccan and must abide the rule of three as well as the major tenant "an it harm none".
Keeping those two things in mind, we practice magick and some of us don't follow the above.
With this information, why, oh why would you choose to harass a bunch of witches?
The Wiccan may say, turn the other cheek, or try to feed the correct info, and then there are the others who may or may not cast something on your account and in turn: you; simply because you pissed them off.
Harassing us is not safe.
Yes, this is a threat, no we aren't all light and love, and you should know this. I'm not talking out of my ass here.
Like seriously. We can bind you, or curse you (I'm Greek, my entire religion relies on curses with the help of the Gods), some may do worse.
And yet, you find it fun to bother us. The one community that can psychically kick your ass.
Good for you for being dumb, especially if you're 12. I get it, the kids at school make fun of you. You're a geek, you like anime and you're obese. Fine, whatever, but, it's not ok to take your anger out on us.
When one dons the mask of the internet, you are given power. Power that you probably don't have at school. So why use that power to fuck with a bunch of people who could do some serious harm? Why not use that power to fuck with people that need to be fucked with?
The following is a list of people that in my opinion need some serious trolling:
Donald Trump (an exceptionally easy target)
Pedophiles (this is the most fun)
Vegans (sorry, but not sorry)
Hipsters (especially the rich ones who insist on looking homeless while drinking six dollar coffee).
The list could go on.
Just leave us alone. It's that simple.
Or else, you're gonna fucking regret it.
We worship thousands of different deities.
Wednesday, November 1, 2017
Shadow and Ana on Halloween.
Perhaps this post will give you an idea of what it's like celebrating Samhain as a pagan family. Many of you are solitary or hoping that once you are in a relationship that you will have a partner in crime so to speak.
We don't live this life glamorously. It seems that Witchcraft is "in" again and that means so is black lipstick, nails and skulls on book cases. All that stuff is fun, I'm typing this right now with deep plum nails, but that stuff's not important. What is important for us is our family. Celebrating together, spending time together while taking time to acknowledging our ancestors, Witches before us, as well as the Gods and Goddesses.
We're not the most devout or spiritual people on the planet, but we left Christianity for a reason. Holidays turned too commercial, all about money and with too much pressure to appear perfect.
Shadow and I are not perfect. Far from it, and that's ok. We get candle wax everywhere during spells, we spill essential oils, and on some Sabbaths, we haven't done anything at all. That too is ok.
This year, with our family separated, we did the best we could with the resources we have. Our daughter had three days of fun and candy and dressing up, and now we're all Halloweened out.
For a family like us who is living with very little cash, free things are a blessing. If you have kids or when you do, search local events that are free. We're lucky that we live so close to NYC where there is an abundance of free or low cost programs.
Our Halloween celebration actually started last week. The M&M company gives out free costumes and treat bags every year at the rec center here in Newark. My son isn't here during the week so it was just me and Ana, but I managed to get a treat bag for him anyway.
Ana in her new fairy costume.
Our next free event Dino was home for, so we traveled to Belleville for an event that we have gone to for three years in a row now. It's completely free, and the kids each get a pumpkin, snacks, popcorn, hot cocoa and can play on a few bouncy rides. Here is Dino helping Ana climb one:
I wasn't able to get a costume for Dino, but using some basic makeup I did a simple dead/zombie/skull face. (I do not recommend Katy Perry's CoverGirl eyeliner, it's just not great.)
The third and final free event was in East Midtown. There, we met up with Shadow and were given bags, a map and other little treats. Ana was able to get her face painted and we got free photo booth pictures.
Walking around the neighborhood was fun but tiring. At least we got to see some cool little shops (not that we can afford them). We ended our trick or treating at the 58th street library where Ana was able to play and read. She also got a free book, a little draw string bag and a pencil. I also managed to check out Dan Brown's new novel Origin, since the wait list at midtown is 300 holds long.
After all this we learned about the attack downtown and had to avoid the area. We were lucky, I had planned to go back home via the WTC Path train so I'd avoid the crowds on the 33rd St Path. I took the bus (you stay above ground when shit's going down), and on my transfer to the M42, we saw at least 20 or more emergency vehicles of all types passing all in a row. The UN is at the East end of 42nd, so I don't know where they were going. That's the one downfall to living in one of the most famous cities in the world, it can get crazy and incredibly dangerous.
I hope everyone had a great Samhain/Halloween. Don't eat too much 🍬 but do take a moment to thank those Witches who came before us.
Saturday, October 28, 2017
No this isn't the millennial complaint of I can't afford a house, what I mean is not wanting, period, an actual physical stand alone house with a yard and a white picket fence. Some people, usually much older adults who have downsized themselves understand where I'm coming from and agree with my decision, but it's everyone else who seems to think I'm nuts. And I'm writing this to prove my point, so perhaps someone my age can look at this and say, yes, what she says is valid.
Now, some points Shadow and I agree on, others we have yet to come to an agreement, he grew up in actual houses, I only have lived in one as an adult.
In either case there are some points that regardless we need to consider, like the fact that we're both disabled and need to visit the doctor frequently. This narrows our location options considerably.
Therefore, I must think like an older woman whose children have moved out and must care for not only my condition but my husband's as well. So why not downsize from the very beginning? Shadow and I both agree we don't want to deal with more than 750 to 800 square feet. We want to be able to clean everything in one day and keep it moving. Our stint in temporary housing also taught us that we don't need much and we don't have much left to fill a large space to begin with.
So we're certainly not going to get a house that small, but the issue is more than that. It's the house itself. Houses need work, houses require chores outside of the realm of my capabilities as well as Shadow's. Who is going to clean the gutters, mow the lawn, prune the trees, shovel snow and all the other countless property work that must be done continuously? We would have to pay a company to do all those things for us, which quite frankly is a waste of money. This really is the main reason why larger houses had staff! Even some of the houses here in Newark that have now been divided into multi family dwellings have servant quarters and stairs, usually the back ones that lead to the top floor which was not an attic. One mother, no matter how much energy she had can not properly take care of over 2000 square feet.
Stairs is yet another reason why a house is out of the question. I'm not climbing them just to get to my room, or going down them just to get to the laundry. My knee is already damaged beyond repair and they will not replace it. Which means why should I put myself in a position where I'm purposely putting more wear and tear on it? I think not.
Living simply, efficiently, uncluttered and healthily are our main priorities. And you would think that a small house upstate would fit that bill, but it doesn't. Our health is important. We want to be close to the best doctors and hospitals in the world, which we are, so why move away from that? (Looking at you NYU Hospital for Joint Diseases)
Now that I've given what I don't want, here is what I do:
A small co-op or condo centrally located, where we can walk everywhere, like the pharmacy to get our meds, or to the farmers market to buy a shit ton of kale. My kids are young, so I want to be able to walk no more than ten minutes to the park, or to their school.
I don't want to be higher than the 2nd or third floor of a building that has an elevator. I want a co-op board that will approve my proposal for a Kohler walk in tub and to take out my kitchen cabinets to replace them with solid wood shelves with cast iron shelf brackets. I also want to research flooring that is low impact on my joints.
There is a method to my madness. I have psoriatic arthritis and whatever I can do to minimize my joint pain while living my day to day life, I'm going to try and do it. These are things that Shadow and I have discussed and agreed on. Why make our chronic pain filled lives more difficult?
Things need to be easy to clean and take care of, if we don't use something, than we don't need it. Things that cause messes and clutter need to go.
Perhaps people can't see how sometimes I struggle with day to say tasks. Maybe that's why they mostly dismiss my thoughts on housing, they're all house owners themselves, but they're also all able bodied.
I should probably start explaining it like this: where would you put your elderly mother who was sound of mind, fiercely independent but couldn't walk up stairs, and whose hands can no longer work the can opener?
I don't need an assisted living facility, I can't manage an entire house. Thus a small cozy apartment is all I need and want to be comfortable.
Of course all this is just planning for right now. Nothing is definite. But I just needed to get this down on here since I was tired of people saying I'm stupid for not wanting a house.
Thursday, September 14, 2017
This isn't a post about the law of three or any such Wiccan or Pagan tenant. This is personal and quite frankly it's taken me well over a month to post this, because I had to muster the strength to do so.
It is my family that is divided. At the very moment that I type this, my son is at his father's house from Monday to Friday. Shadow is in a men's shelter in Manhattan and I and our daughter are in an apartment in NJ where my parents are taking care of us till we get "back on our feet".
It's heartbreaking. I had to get this out tonight because Shadow and I were nearly in tears as we separated and tried to say goodbye to our daughter who cried "no dada, come home".
Home is always where your family is. It's not a physical location, it's the act of being together no matter where you are. I want people to understand that. Many pagans don't feel at home with their families because they just don't understand their spiritual beliefs. I can't in good conscience call that a home. To some people, school is a home. It was to me for four years of highschool because I had my friends who truly loved me and cared for me.
When we grow up with such discordance, we vow to make our own homes, our own families, that will be loving and caring and way better than what we suffered through living with "them".
I did exactly that. I was lucky to make a good home with my sister and my son while he was little. Then Shadow became more than a friend and we made another home and added our daughter to really complete our family.
If you've read about our other adventures in Wiccan adulthood, then you know we have not been blessed in the health department the past two years and that's yet another reason why this is so difficult.
We've been through sickness and not much health, but it's each other that we lean on. Our faith in the God and Goddess that we turn to. My parents don't understand that. They also don't understand the true extent of our respective illnesses and disabilities.
We're stuck in a very difficult place right now. We both need to get better. That's number one. Second is taking care of our children. Third is making the most of our time together because we only see each other once a week and even then, sometimes it's not all of us.
Since my son is older, I needn't worry about him too much. I believe I have spoken about his ability to astral project before. He often tells me how he visits me at night to check up on me. One time, he even came into a dream, where I said, you're not supposed to be back yet, to which he replied, I know mommy, and drifted off giggling. That's my son for you. He's a bit of a trickster and we all love him so much.
Anyway, there were signs to today that things are looking up. While getting off the train at Union Square, we happened upon a hematite bracelet, which we gave to our daughter to wear. She is the link in our chain that keeps us bonded forever. We prayed for this baby, we asked the Goddess to protect this baby, she is her father's whole world, just as my son is mine. The other thing that happened was we saw Angel at his usual corner. He is the gentleman and spiritual healer we purchase our crystals from. He has often been in trouble with the police (for allegedly selling religious items which is against the law), so seeing him with his table full of crystals was a great and welcoming sign.
So that's where Shadow and I stand. Separated by distance.