Judgment Day

~ gypsy116toast2001 ~ Leave a comment

I feel…. Fuck, I don’t know what I feel but it isn’t good.

I spent the day at my sister’s. A cousin of mine was going to be there with her children. The youngest two are near my son’s age. The older being six months older than my son and the younger a year and a half younger. The kids went downstairs to play, my son included, while the adults stayed upstairs. From the sound of things the other kids behavior wasn’t the kindest. They were hitting my son with balls, he did not like it.

My child prefers the company of adults and older children. This, I’m sure is at least in part due to it being what he’s used to. He was born right before the world shut down. He didn’t have any exposure to anyone outside of my family (me, his dad, my parents, sister and nieces) for about the first year and a half of his life. After that, his exposure has been limited. Illness doesn’t lend itself well to a lot of socialization.

His encounters with children his age have been few and he’s mostly either ignored the other children in favor of the adults in the situation or stayed mute while following the other child and letting them give him instruction.

I know that this is in part because I haven’t provided him with many opportunities to engage with children his age. I also know that it’s in part autism.

I wasn’t ever truly bullied at school growing up. I mostly stayed out of way, hidden. There were a couple of incidences with girls who were in my friend group (aka the other friends of my only actual friend) where they weren’t very nice but mostly behind my back. They just didn’t like me. I was weird. This was echoed in the time spent with my mom’s side of the family. I was quiet. I was awkward. I was the weird cousin and I wasn’t treated too kindly.

I’ve read enough experiences of other autistic people to know that this is how childhood goes for many of us. We’re treated unkindly at best, severely bullied at worst. It doesn’t matter what we do, mask, hide or actually be ourselves, other children see us as different… Not the same…weird.

This is the part where I don’t know how I feel, or I’m feeling a confusing mixed up jumble of things. If I had provided my son with more opportunities to socialize with children his age, would he be less awkward with them now? Would I even want him to be? I don’t want him to be anything other than his weird and wonderful self but… I also don’t want him to suffer unduly.

I don’t know. Discovering that I am autistic has helped me to realize many, many things about myself and my life. One of the most important being that a lot of the things that I like most about myself are because I’m autistic. I’ve spent so much time mutilating my sense of self, attempting to cut those parts of myself off in order to make myself more palatable to others. There’s nothing wrong with the way I was to begin with and I wish I had known that. There’s nothing wrong with my son. I wonder if the problem lies more in the way other children are socialized than the way my son has been…My son was anxious but he made his best attempt to join in and he got the weird kid treatment. Maybe we all need to look at the judgements we’re making and try our best not pass them down to our kids and talk to them about the unfair judgements being made around them in our society.

Guilt Becomes Her

~ gypsy116toast2001 ~ Leave a comment

I have been seeing a nutritionist/health coach for the past several months. I’m supposed to have an appointment with her today but I cancelled and… I’m filled with guilt.

She, the nutritionist has me doing SCD(specific carbohydrate diet). I’ve made some pretty significant gains in my health since starting the diet, including an increase in energy. I think of it this way, if I had a million steps I’d have to take in energy increases from where I started to get to a healthy energy level, I’ve taken about 100 since the start of the diet. I still have a long way to go but that’s a substantial increase, given I’ve only been going the opposite direction for the past few years.

It was wonderful to feel like I could move. So wonderful that I wanted to move more and more. So I did.

The feeling of freedom from being able to move my body when I have not been able to in so long, combined with a sense of panic caused by a recent health scare (too much to cover here but my naturopath thought there was a worsening in insulin resistance and was advocating for a medication that I do not want to take. False alarm but…) seems to have caused a relapse in some obsessive thoughts/behaviors related to old eating disorders and long story short… I did too much and I crashed hard.

This is not the end of the world, though admittedly it did feel that way. I just need to rest….a lot. So, I cancelled all of my appointments for the week. I’m feeling better. I could technically handle the appointment today but I don’t want to.

I’m going shopping with my sister this weekend. She needs clothes, so does my son. I’ve been looking forward to it and I want to make sure I have the energy to go. I haven’t been able to do something like this in near a year (I’ve done all of my shopping on line). Appointments take a lot out of me and I get so activated that I can’t sleep after.

I do believe I’m making the decision that is best for me right now but…I can’t shake the guilt. I should go to the appointment. I should be able to handle it. I should be a good little girl and not make a fuss or cause any inconvenience for anyone. *Sigh* Man, childhood programming is a bitch.

Miraculous

~ gypsy116toast2001 ~ Leave a comment

I’m laying here watching my son sleep and man, this shit just absolutely fucking blows my mind.

My love and I, we had a really good night, like a REALLY good night… and morning. And then my son just shows up because of that night…or morning. And then, he just grows inside of my body. Like I didn’t have to do anything or even think about it, though I did think about it, a lot, like it was all I could think about but I digress. I didn’t have to try, he just grew.

And now, here he is. He’s this whole human being, perfectly imperfect and perfectly himself and I can’t help but wonder…

How dare any of us not believe in miracles?

Honestly

~ gypsy116toast2001 ~ Leave a comment

Is it just me, or has anyone else’s head felt like it was going to implode…or maybe it’s explode, I’m not sure… At any moment, lately.

I can not seem to stop ruminating…about… EVERYTHING.

I think I NEED to write.

I was thinking about my old blog earlier. I received a lot of big reactions there. A lot of hate but also a lot of love…a lot of people saying that I was helping them. I didn’t understand it at the time but now, I think it was because I was so honest. I think in order for this blog too be truly helpful for myself and (hopefully) others, it may need to be that honest.

I’m not sure that I’m to the task. I guess we shall see …

Undiagnosis

~ gypsy116toast2001 ~ Leave a comment

If you look up the typical signs of autism in a toddler, my son doesn’t really fit the bill. He’s has had no language delays. No intellectual dysfunction. He makes eye contact with no problem, uses his imagination to tell me creative stories and is at least somewhat social. He’s always responded to his name, smiled when you smile at him… Fuck, he doesn’t even toe walk…

What he does do is line up his toys, stack them up, organize, reorganize..He is sensory seeking, rolling and bouncing and rocking and hitting himself into and onto my body, the couch, the walls. He’s eaten the same thing for dinner for the past year and half or so. He went though a period where we had to be very careful in what textures he ate, how fast he ate, if he chewed well enough… Or he would gag and vomit. He runs and hand flaps whilst pooping. He hand flaps and makes other happy gestures when he’s excited. He “puts water in nose, eyes, ears”… Finger to mouth, finger to nose. Finger to mouth, finger to eye. Finger to mouth, finger to ear. Over and over.

The most telling sign of all, I’m my opinion, is his extreme demand avoidance. His equalizing behavior when stressed out. How contrary he can be…

Despite all of these things, most people (even autism “experts”) see him as neurotypical…. Listen to how well he speaks, oh and he’s so sweet and creative and social and and and…

I am fairly certain that I am undiagnosed autistic. I went under the radar my whole life and the consequences have been dire. I’m not willing to let that happen to me child.

Finding appropriate and affordable help should not be so damn difficult.

You don’t have cancer, you’re fine!

~ gypsy116toast2001 ~ Leave a comment

I had my appointment with the hematologist last week. I want to take you through a brief synopsis of said appointment, you know, in case you’ve only ever been to the doctor for things they see everyday… Things that are acknowledged… Things that are recognized as real and therefore you were treated as valid…

I want to preface this by saying that this doctor did seem to be a perfectly lovely human being. She was kind and knowledgeable and did seem to genuinely want to help. This is in stark contrast to many, many (not all but MANY) doctors that I have seen who instead appear to not have much knowledge at all, while simultaneously acting like they know everything and completely discounting anything I may say as having any value, if they even acknowledge the fact that I’m speaking at all. That said, let’s get to the appointment shall we.

A little back story, I am an anxious person. I don’t want to get into all of that now but I am. Anxious. Appointments of any type tend to have me extremely overwhelmed to the point of nearing panic. This has improved over the years and I can mostly hide it and get through appointments seeming like a fairly normal human being instead of the ball of anxiety wrapped in skin that I feel myself to be. This appointment was different.

I spent all morning in a state of panic. I was really nervous about having to ask about the possibility of MCAS. I had asked my naturopath if she would write something for me to bring. She didn’t think it was necessary as she thought the doctor would have heard of it. I wasn’t worried about her not having heard of it but more of me not being heard when I brought it up(because this has commonly been my experience) but she’s a busy woman so I didn’t push it.

On top of the normal appointment anxiety and the MCAS question induced panic, the day was just one of those where everything seems to go wrong and I ended up being 10 minutes late. I am NEVER late. I prefer to arrive at least ten minutes early because… You guessed it, the possibility of being late causes me copious amounts of anxiety.

Needless to say, I was a ball of raw nerves when the doctor walked in (thank God my sister went with me, in case I lost my words because I did just that). Apparently, so much so that it was readily visible because it was the first thing said doctor commented on when she walked in the door (she wrongly assumed that I was anxious about my diagnosis, again wrongly assuming I thought it might be cancer).

She went through all of my blood work to explain to me that I do not have cancer and I am fine. I’m fact, had I (and my sister. Thank you, I love you) not brought up MCAS, that would have been the whole of the appointment. You don’t have cancer therefore, you are fine (giving credence to my belief that people only take you seriously if you have cancer, no matter how sick you are with something else). But I’m not fine. I have been very sick for eleven years. If she wasn’t aware of that (because, you know, why would my PCP want to mention that in my referral), she most definitely was aware that my white blood cell counts have been high, chronically, for years. That’s why I’m here.

Her explanation was that my body was just reacting to things. Well yeah, no shit. Why?

I said that I wasn’t worried about cancer but that I think that I have Mast Cell Activation Syndrome and my sister filled in the back story because… again…anxiety…no words. She, the doctor not my sister, said that yes, that could account for my wonky white blood cells and ordered more tests(I’m still unclear on the results) and sent a referral for an immunologist.

This appointment actually went really well, like this is the best outcome I could have hoped for but… If I hadn’t pushed, it would have been, you don’t have cancer, you’re fine. No acknowledgement of anything else.

When we were getting ready to go, the doctor said something along the lines of, sometimes it just takes awhile to get a diagnosis, especially with these rare diseases. I think she was trying to be comforting and I really do appreciate that but …. It was said so nonchalantly and off the cuff, like over a decade of having a debilitating illness is no big deal. Eh, it’s just the way it is. But it isn’t nothing. Have you, dear doctor, ever been sick for even a year straight? I doubt it, otherwise you wouldn’t be so nonchalant. I understand that doctors are only human and that they only have the information that they have but maybe, just maybe, if more doctors listened to their patients and took them seriously, it wouldn’t take more than a decade for people who are very ill, to find a diagnosis and hopefully treatment that actually helps.

Halloween poisoning

~ gypsy116toast2001 ~ Leave a comment

It’s Halloween and I’m sitting at my sister’s house, alone, trying not to feel too depressed.

My child. My partner. My sister and nieces… Are all out trick or treating without me. I went briefly but I’m too sick to continue.

It’s hard when illness prevents you from doing things with those that you love. Halloween is particularly hard for me.

Instead of wallowing in self pity, I think I’ll talk to you all.

So, anyway…I poisoned myself today. No, I didn’t like drink some Drano or take a bottle of aspirin or even eat some food that had gone bad or any contaminated Halloween candy. What I did do though, was put on some deodorant.

I use a non toxic deodorant, which I had accidentally left downstairs. I, being upstairs and thinking that my mom had switched to a non toxic one too, used hers. I didn’t have the energy to go back down to the basement and I didn’t want to be smelly. I may not be able to participate in Halloween the way that I would like but I was still going to be around people.

Anyway, definitely not non toxic. Toxic. Very, very toxic.

Immediately my head started to pound and my stomach turn and I wanted nothing more than to remove this wretched substance from skin. I felt the little energy that I had draining away. It would not come off. I had to get back in the shower and I could still faintly smell it.

My first thought was “why the fuck is this in my house? Everyone knows how sick I am and how fucking sensitive I am”. Immediately followed by “wait, no, why is this even in the world?”

I recently watched a video about Mast Cell Activation Syndrome (MCAS), where they used the metaphor of a canary in a coal mine. The world’s most sensitive people are dropping like flies.

If toxins are affecting those of us living with chronic illness, they are affecting the rest of you too, whether you realize it or not. We are the dead canaries. It’s time to run folks.

Awhile back, I sent some links to my mom for some less toxic hair sprays. Hers sends me running for the bathroom, violently dry heaving. She was not receptive. I was talking to my sister about it and she said something along the lines of it being a lot to expect of her to switch, given what our mom does for a living, which is hair. She’s a beautician. Hair spray is her life.

At the time, I agreed. It is a lot to ask. The more I think though, hmm, fuck that.

Changing to healthier products is exactly what we should be asking of the people who style hair for a living. They use more product than anyone. They influence what the public purchases. Therefore, they have the most responsibility to use ethical products. This goes for any industry.

Period. The end.

Between a Rock and a Hard Place

~ gypsy116toast2001 ~ Leave a comment

What do you do when you are stuck? When you are, as the proverbia expression goes, between a rock and a hard place?

Maybe it’s more of a chicken and egg thing? I don’t know. If our former decisions cause our current reality but our decisions have been made of wounds that can’t heal without a new reality, what then? How do we change?

If you are so sick that you can’t heal without help but the only help available to you is also harmful to you, what do you do?

If healing requires being in a safe environment, free from trauma but you aren’t physically capable of living on your own until you heal and the environment you are currently in and the only other option you can see are filled with trauma, what then?

I do not want this blog to be a negative space and I appologize for it being so thus far. I would like this to be a place of hope but I’m really struggling right now. This space is currently a reflection of that.

I’m not meaning to come across as hopeless because I’m truth I’m not. I have faith and hope but the truth also holds a lot of darkness. I don’t believe we are served by trying to stay only in the light when there are shadows that are need of exploration. I think it’s necessary to explore these shadows publicly. How else do we create awareness? How else do create change?

Please bare with me while I struggle.

Unhappy Halloween

~ gypsy116toast2001 ~ Leave a comment

I’ve made the final decision. I will not be dressing up for Halloween this year. I’m just too sick. It isn’t possible.

This is, of course, something that I already knew but I didn’t want to accept it.

I’m hopeful that because now we know what we’re working with, symptoms will be under control by next year.

I’m hopeful that the hematologist will be able to give me an official medical diagnosis of MCAS.

I’m hopeful that this will mean that I will be taken at least somewhat more seriously.

I am hopeful but for now this really sucks. Anyone who knows me knows how much I love Halloween. You may or may not know that I wasn’t aloud to celebrate it as a child for “religious” reasons and that that makes it all the more important to me now.

*sigh*

Now to figure out how I’m going to manage taking my son trick or treating….

I need a wheelchair.