The Feelings Part 3

I’m trying to see this period of my life as a good thing – an opportunity to unpack the trauma I’ve been avoiding and do the healing I need to do. I want to be able to take this mystery condition that I still have zero answers to in stride and not be angry and grumpy and depressed about it, but I am not there yet.

So much of my day to day is currently consumed by pain and fatigue, it’s impossible not to get upset and discouraged about it sometimes. But I am also learning some good things, like:

  • I am extremely loved and cared for by people I’ve never met (thank you, holy shit <3)
  • I am really good at choosing my family and have a strong community
  • I have the capacity to be more present with people I care about

I feel guilty and self-conscious about being so open with the giant trigger that is living my life with a ghost disorder that also constantly reopens trauma. I feel guilty for making the decision to step back instead of plowing through, because on some level I still feel like I deserve to suffer and actively choosing against that feels like blasphemy.

So much of my CPTSD is manifesting in my body and my instinct is to take all of that angst out on myself instead of understanding that none of this is my fault. I worry that by being open about the infinite layers of pain that come in waves is too much and that I’ll just wind up drowning people in my whirlpool of depression. But then people reach out to me to say that my candidness is helpful. My community immediately reminds me that I don’t deserve suffering and taking care of myself is the right thing to do.

So I’m trying to keep that perspective: I deserve to take the time to heal and get better, and doing so doesn’t make me an awful terrible selfish person (fundamentalism is still clacking around).

I’m discovering a lot of very specific traumas that this whole illness is sitting on: There’s medical neglect and anxiety, and then there’s the deep seated fears that resting will get me in trouble, that I am a nuisance if I can’t do what I usually can, that I did something to deserve this, and that I’m useless because of it. Doing The Work of trying to heal 18 years of bad experiences while sick is exhausting, but I’m trying. I think in some slow small ways I’m succeeding.

I’m still getting eaten alive by brainfog and anxiety and the grief that accompanies realizing that I really am disabled and I really do need help, but I’m Doing the Work, and I’m asking for help, and even on my worst days (like today when nothing touches the pain) I can tell that I am loved and I will eventually be okay. It might be different, it’ll take me a while to get there, but I can at least imagine getting there, and that’s progress.

The Feelings Part 2

I’m feeling many ways about my disabling illness. There’s a good bit of anger, a lot of exhaustion, 6 feet of grief, and a lot of anxiety around whether or not I’ll get better.

There’s a part of me that has resigned itself to this new normal and a part of me that really wants to fight it. But the biggest part of this equation is my complete exhaustion.

Cortisol labs were inconclusive so I have to do the entire test again and follow it with an 8am blood draw to confirm whatever the results are from the spit test.

My doctor did say that it seems like I have IBS (shocking I know) so she gave me some Omeprazole and Dicyclomine to help with digestion (and I have since eaten 3 meals without feeling nauseated!) and Banophen so I can sleep. I’m hoping with rest and the ability to digest food my body will calm down a minute but I’m not sure. Everything went extremely downhill after my endoscopies and I don’t think my body has recovered from that trauma.


I still feel very lost. I’m trying to focus on making art because it helps, but I miss school, I miss all the things I was doing on campus. Being relegated to the couch all day because I ran an errand the day before is really demoralizing and upsetting.

I’m very sad because I feel like I’m missing out on so many things. I feel like I’m letting people down when I flake because my body just decided to quit at 4pm. I’m sad I can’t be doing all the things in all the ways I want to be. I’m sad that this is so hard and it takes such a toll – not just on me, but on everyone I care about. I wish it didn’t. I wish I could live my normal life but instead I don’t know that I will ever get that back and it’s terrifying. The FOMO is hard and real and I don’t really know how to cope with it.

Having an invisible disability on public transit is really hard. I know I look healthy and young and spry, so I don’t sit down when I should because I don’t want to deal with people judging me, despite the pain. I don’t want to ask for help because I look like I shouldn’t need it. I still try to do as much as I can by myself because I don’t want to believe I’m not well. Which is really counterproductive.

I realize that I need help if I’m going to make it through the recovery process without drowning in debt or dying from financial stress, because being sick like this makes looking for a job completely infeasible.

I live off my patreon, the podcast and a side gig which totals to about $900/mo….in the most expensive part of the country. 75% of my income goes to credit card bills and the rest is divvied up between transit passes and groceries. There are supplies that I need to make cooking and baking (mostly bread and hummus) possible so I don’t have to take a bus to buy a very small very expensive loaf of gluten free bread, but I can’t afford those either.

If you’re interested in helping me survive this terrifying journey there are a bunch of different ways to throw money at me and get varying levels of art in return (along with my undying gratitude):

  • Support me on patreon! Patrons get access to download the files and behind-the-scenes updates – there’s currently an exclusive video of me reciting this poem. If I can reach $1k/mo on Patreon I will be able to sleep better at night and not feel like I should skip eating to save money.
  • I listed some of my paintings for sale on Etsy
  • I have an amazon wishlist of supplies that would make my day-to-day easier and enjoyable.
  • I can be cashed or venmo’d a cup of coffee or gluten-free groceries.
  • If you need a professional cat-herder to help you organize remotely or set you up with WordPress, I’m also looking for work.

My plan right now is to lean into art and let that bring me life while I continue to play this constant testing and waiting game of 3rd dimensional chess.

Pause

I sent all the emails on Friday that told everyone who needed to be told that I’m dropping out for my health.

I’m too sick to be in school and on campus so I’m dropping out. I have been stuck in a shame fueled depression since I made this decision even though I know it’s the right one. School has been so hard but also so good. I miss it and I feel lost. I have other projects but my depression ate my motivation and I need it back.

Most of last week I spent trying to come to grips with it, and talk about it in a way that wasn’t utterly depressing. Everyone at school has been super supportive and not angry at all, which is the anxiety that was eating me alive. But I’m still really sad and really devastated about it.

I don’t have the energy to get into those feelings right now, but the words will come soon.

Semester No. 5

My semester begins tomorrow. I’m very anxious. My body has been tense all day…all week, really. I’m not anxious about my classes – I’ve re-evaluated them thrice now and I’ve taken my health and spoons into account so I’m only doing one in-person class (US Government), and two online classes (English 5, and Cultural Geography) in addition to my Student Government & Laney Queers organizing and my independent study (which is essentially writing down what I learn in the student senate).

I’m anxious because this is the first week of school and on Wednesday I get snake cameras and sedation instead of doing fun Welcome Week activities, on Tuesday I meet with my department chair and have my first class while on a liquid-only-diet and then get to drink the colon cleanse “juice”.

I think I’m more irritated that my first week as a senator is going to be interrupted by being sick and there’s nothing I can do about it than anything else. I’m realizing a lot of my life is going to continue to be interrupted by being sick and there’s nothing I can do about it and it’s really just…. quietly devastating.

That knowledge hangs on me like a heavy jacket twice my size. It’s with me every moment of the day. It envelops me when I struggle to put together a meal because I can’t get out of this fatigue and brain fog regardless of how long I close my eyes. I’m quietly haunted by my own ghost that I can’t figure out how to release.

I don’t know how I’m going to get through the next semester. I don’t know if my body will hold together or if I’ll have to drop out. Everything feels so precarious and I’m so so exhausted.

So tonight I managed to make myself some Gluten-Free low-ish-fodmap peanut butter energy bites so I can at least have something to munch on during the days I can eat solid food. Doing post colonoscopy Kieryn a solid.

ha.

Whirlwind

Everything has been a whirlwind since school let out for the summer and it starts up again in 3 weeks but I am still reeling.

The rug was pulled out from under me in June when I went to the ER and was diagnosed with Colitis but couldn’t see a GI Specialist until the middle of July. As it stands, I have an endoscopy & colonoscopy scheduled for my first week of school when I’m supposed to be doing Senate-y things, but it was the soonest they had available so here we are.

My new PCP is helpful and working with me on the diet changes through this process, I am emailing her a weekly check-in on symptoms which is very helpful considering her next available appointment for a followup is in September.

I have learned that, apparently, what my body needs right now is to be Gluten Free, LowFODMAP, and vegan….which feels impossible even though it isn’t actually. I was miserable all last week because I stopped eating normal bread, but on Sunday I found some ($$$$$$) Gluten Free bread mix (and then had a minor breakdown because needing to be GF is breaking my budget). The bread I made (with this recipe from the bag and some rosemary) turned out surprisingly well and now I need to acquire better baking equipment and supplies so I can get through this semester in one piece.

On top of that fun health spiral, my degree program is unlikely to survive, and all of my degree classes were cut for this semester. Additionally, Peralta is not doing well financially so most of this week I’ve spent in a mild panic talking to Deans and coming up with a plan for graduating by next December.

I even made a spreadsheet for it

After talking to the Dean of the department I’ve decided to switch majors from Labor Studies to Political Science, this way I can get my AA and transfer to a 4-year that has a Labor Studies equivalent.

My next steps are: Meet with a counselor to get an updated SEP, and then meet with the Department Chair to go over both an Independent Study plan and figure out how to get my LABST classes to count towards my Political Science degree.

Aug 1 is my first day of being an ASLC Senator, which is a 2 semester term. I’m having a lot of feelings about changing majors, and being a senator, and gender feelings about how my problem was immediately addressed without my having to over explain the situation entirely because I was being read as male, and being sick and how that’s going to go down this semester (and how am I going to get through the first week of school while doing colon prep?), and and and…. I want to write more about that later but I am too exhausted and more importantly….

I HAVE ADOPTED A FURCHILD.

Peridot the cat sleeping on my bed

Peridot is a 2 year old tabby mix who was described as dog-like and is utterly perfect. Peridot even has an instagram so go subscribe for some good catte content: https://www.instagram.com/peridotfiercewater/

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Yarnz r mine

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New Meds Muse: Zoloft

I’ve been taking the full-dose of Zoloft (currently 50mg a day) for about a week now. I was going strong until I got stressed out on Friday, and then everything just kinda has been a haze of anxiety. I was super focused and creative and fucking fantastic for a week…excusing the bouts of nausea/dizziness and general there’s-a-new-chemical-in-my-body-side-effects that lasted a few days (and then went away, and then came back randomly but only for an afternoon or so off and on, I’m only in week like, 2.5 of new meds, so). Sometime over the weekend it’s like I forgot how to focus and I’ve been really tense.
A couple circumstantial things don’t help: our shower drain has been clogged since the weekend and the plumber was supposed to come today but didn’t, and the subsequent sink drains have decided to join in on the clogging fun, so I have a bunch of unwashed/gross/dirty dishes from a failed attempt to wash them just sitting on the counter, I haven’t showered since the weekend (because pooling just feels bad when you can’t clean the tub, and feeling grosser after showering than before is sorta pointless), and the bathroom sink is all slow now, so doing anything for longer than 30 seconds is basically out.
On the upside, I’ll be at a wedding this weekend and the hotel will have a working shower, and my pit hairs are kinda cute right now.
I’ve spent a lot of this week trying to still work on things – I ended up managing to get a lot done – this week’s comic, for instance, I finished already and I think it’s awesome, but KieryGeek is gonna wait because I just couldn’t, at that point, the anxiety had pretty much taken over. I’ve been working on my Ruby site pretty regularly, though I feel like the going is pretty slow. Some of that though, is just how learning a new language is and has less to do with my meds.
It’s so weird though, because I can tell that the meds are doing something, I know there’s an edge of anxiety that’s missing, because there’s a tiny tiny calm space even though I feel like, today, I’m on the verge of a meltdown.
My current plan is to ask to up the dose when I go back in July. I know they’re doing things but I feel like I did before I needed to up the dose on my anti-depressants – work great as long as there’s no stressors or anything, but as soon as something is there, it’s like, just doesn’t have enough umph. And some of that might just be because I’m only 2.5 weeks into the new medication, but if one lunch & some plumbing issues can throw me for a loop, I’m thinking…yeah with the upping being a good idea.
And if that doesn’t work, I guess we’ll try something else.
It was so nice to be creative and focused again though, even if it was only for a few days. I want that back.

Sea Buckthorn and etc

I took the week off of face stuff last week, and gave my skin a rest. Also, I was tired of poking my eyes so frequently (and I was hoping for the acne to quell). A friend of mine recommended some Sea Buckthorn oil, and while I was at whole foods over the weekend (to find ingredients for epic pork wellington)I thought I’d look in their oils/skin care/body section for Sea Buckthorn.
I tested the oil sample, and upon arriving home found that it did actually seem to help my skin – this awful cat scratch finally started healing and my breakout started to diminish. I ended up buying Sea Buckthorn Cream Body Wash – and used that on my face and skin today, and it was wonderful!

I love having a natural go-to for skin care, and I found one that really seems to work – especially for acne prone oily faces like mine. Almost like the lemon-honey toning mixture I made, and they work in tandem well. I’m hoping that I’m not just like super excited, but my face does seem clearer and more even. Also, it comes from citrus, which is great and reminds me a little bit of Florida, where I grew up and makes me happy. Tropical fruits ftw!
For the next 4 weeks I’ll be doing a tone up with another friend of mine and you can follow along by watching her blog or my tumblr. MWF are my Sculpting days, and TTS are my Cardio with a rest or whatever-i-wanna-do on a Sunday, which most likely still involves lots of walking. I’m using Fitocracy to carry my workout details, and my fitblr for steps/cardio/cals etc. I’m doing my days opposite Kahleesi for funs.
I might do more than one outfit post this week, depending on how I feel, because I just put together this wicked adorbs outfit with leather shorts and I feel like a super hero, I just have to apply makeup to go-with. It’s been ridiculously cold, so if I can stay in my warm pj’s, I have; which isn’t conducive to makeup.
I have been making a new list for this year, because my birthday is next week. I don’t think I’m going to come up with 22 unless I can come up with them naturally. I pushed for 21 last year and it was less fun that way. I have 18 things right now, I think, and I’m excited about all of them. We’ll see how well I do. I’ve done all but 2 or 3 from last year – some intentional, because some of those (like intrinsic value) are more of a life journey than something that can be achieved in a year, and others because of filming continuity (no piercings or tattoos yet).
I will watch some tutorials on HOW TO APPLY EYELINER WITHOUT POKING YOUR EYES OUT WITH EYELINER because that gets old, and I did that like 3 times while getting ready for our Valentines dinner at the Sea Grass Bistro – where I had foodgasms for the first time and it rocked my world.
Lamb chop with mint infused honey felt like a hug on my tongue. No idea that could happen.
I need to do some more cleaning – and sweep my floors because borked roomba is borked and having work space for stuff helps. But I’m strangely lacking the motivation as I’m on a bit of a WoW kick and leveling quicker than I have in a while – admittedly, all of twice, but I’m almost 87 and I only got to 86 a day or two ago, so that’s getting me closer to my goal of hitting cap.

fails

This blog is not by any means a place for expert advice, at best it’s the general wanderings and musings and evolution of “the process” – my process, a process, some kind of process; inexperienced me attempting to get somewhere and hopefully be better at it. Posts change with moods and whims because my interests change and vary – it’s a weird thing about my personality. Sometimes, when I feel I’m making progress and then something happens where I feel like I’ve gone backwards I take it pretty hard.
I made a ton of progress with my face over the last few weeks. Actually my skin was clearing up and evening out, and acne was going away. All the things I should have learned and done years ago. Then I started breaking out again – I didn’t know why, and then I realized that the only thing I changed was adding moisturizer. I stayed away from it forever because I have very active oil glands – but I thought I should get some because of all the stripping of oils I was doing. I felt really sad about it, strangely enough. Because I’ve never seen my skin clear that way and I almost panicked. It’s easier to apply makeup when I’m not battling acne and acne scars.
So, I remembered something else that I overlooked – I wasn’t drinking a ton of water. Usually, I have an okay water intake, but sometimes in the winter I forget about water and opt for tea because it’s warm and I’m usually just trying to keep my fingers at body temperature. I decided a few days ago to re-up my water intake and see if it helped. Surprisingly enough, between drinking close to 40 oz. of water a day (there should be more, I know) and giving my skin a break and *not* applying moisturizer, it’s starting to calm down again.
I guess all I wanted to say was, I LEARNED A THING! Water really does help clear up skin. Water, and lemon-honey mixture on the face. Apparently moisturizer however, does not agree with my lebanese/portuguese skin type.

Bikini Debut

We had a heat warning thing the other day because the heat index was at 100º F due to humidity. Unlike the rest of the US, apparently Maine doesn’t believe in central AC so we have to try to suffice with the stupid window units that work as long as you’re not in a different room.
So then the power went out, for an hour or two. We left and went to dinner (AC!) and then came home and decided to go to the beach.
I’ve been wanting to break out my bikini, so I put it on and we left and I realized that my bikini debut was going to take place on a day where I’m really prickly, because I hadn’t shaved or had a chance to shower before leaving, and my hair was all greasy and I was bloaty from heat and water retention and my stomach being weird all day and generally the complete opposite of how I wanted to look when I wore my bikini to the beach in my imagination.
But then I realized, you know what, I’m okay with that. I was okay for not being completely perfect and just going – unshaved legs and arms and greasy hair and acne and bloat and everything.
So then after walking around in my bikini for a little while, the bugs discovered me because it was low tide and they were parched, and I looked tasty.
We left shortly after that.
And that’s the story of my bikini debut.