Rough Time

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We ended up, finally, with a couple of inches of snow this morning. My kids, or maybe one was my husband? Were kind enough to send me photos.

I’m in agony. I was whiny yesterday? Ha ha! I tried to stay moving so I wouldn’t stiffen up. Today, I am like Frankenstein’s monster. I have nearly no fine motor skills. I crash around like a huge boar.

Something strange happened this morning. I took my medicine, the marijuana oil, and a while later I felt better. I had been lying still, but I felt dramatically better, and just a bit loopy and nauseated. Did I accidentally take my medicine twice? I feel really good. Just sick. Oops! Then I was ill, which happens so often we keep kidney bowls nearby. I just coughed up some bile. I had to use the washroom. As soon as I went to stand- oh, yes! I had the correct dose. It is very strange for me to do things out of order. But if I had doubled my dose, I could not be in THAT much pain, I am fine. So I hobbled back into bed, and finished a couple of errands I needed to do.

On days that are not so intense, I can keep moving, even if I don’t walk around much. This means my back doesn’t hurt nearly as much. On days when the pain is head to toe, though, there is just no way to deal, except to get through it and recover and piece myself together on the other side.

I am so glad my family is understanding.

My lovely cousin was stuck in town at the airport this morning, when I was at the peak of my stoned-ness, (?) Or whatever was going on there: trying to relax and not cry. She messaged me, I know she could tell I wasn’t myself. I hope I didn’t scare her!

I’m sure it will alarm at least a couple of family members to see me. Over the last three years I’ve lost 120 lbs. Mostly due to gastroparesis, but I know this will be universally ‘positive’ however losing as much as 40 lbs in 3 weeks due to vomiting is not the right way. My body just rejected food. It was horrid. I’m straightening my lovely curly hair because I lie down so much the curls just get crushed and become difficult to manage. That wheelchair we will be investing in. I’m falling so often from my knees giving out, and don’t forget that damn exhaustion!

Ah, well.  Speaking of exhaustion, I am going to have a nap, as I haven’t been sleeping well. I just got a new onesie from Torrid, it has Hello Kitty on it! Just some sleep and when the weather breaks, I need to wrap some gifts. I do this every year. I shop, forget what I buy, my husband hides everything, and when it’s wrapping time, there is a mountain of things!  Ah, its usually small stuff. My daughter’s usually a good helper.

Okay! Gotta nap this out! My lower back, oh wow! Can they do transplants yet?

Mid Break Update

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I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago.  But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

I’m decorating my space with pretty things. I’m organizing everything I can get my hands on.  It’s one of my favourite things.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

Be well, see you on the first!

Gurgle

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I slept until 3:00 this afternoon.  I woke to my husband stumbling into the bedroom declaring he just had a nap! This may be the first nap he has ever taken as an adult.

On Friday I was waiting for Pat McGrath’s lipstick collection to drop at noon, and at 11:45, I started vomiting. I managed to buy some lipstick, but then took a nap. Saturday, I was just as gross, and I finally figured out I may have the flu. Considering my daughter has it, and likely my husband does, and my son has been feeling awful… I just may be a genius. There’s been a nasty flu going around here, and my daughter has been having trouble since before school started. She’s either had it twice, or had an extended remix.

My mom was so sweet, she sent me some money on Friday to buy a treat to cheer myself up. From both her and dad. So sweet.

It was tough, but I had to put my Beauty Blog on hiatus until October 5th. I just don’t have the spoons to keep up with it right now. I’m so sad, because it’s one of my favourite things. I’m hoping the neurologist has a theory and I’m feeling better. I would like some answers and a plan.

When I can’t even do the small things, it’s a problem.

I need joy. To be able to supply joy. And I’m not even talking about sex. I’m so many layers below sex, you can’t even imagine. I have about ten layers to go before I even can think about sex.

On this level is bathing, reading, amusing myself, sitting up, and taking my medications. Not just staring into space.

Sigh.

💜

Not-so-Brief Update

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I should be sleeping. People on TV aren’t really making sense anymore, and husband is snoring beside me. But I’m awake and my back hurts and my head feels as if a small Lego person is wielding a pickaxe and slamming it into the back of my head, right where it joins my neck. It’s wrapping around to my face, and I only feel good when I’m lightly biting on my mouth guard.

I spoke with my dietician today, and it looks like I’m down a bit more food. She is not qualified, of course, but she did confirm that it sort of sounds kind of like I’m tending towards gastroparesis, and I should see a gastroenterologist asap to get the tests.

  • Fatty foods are bothering me. Consistent with gastroparesis
  • Eat and drink alternately. I’m struggling, it’s cutting down on my food.
  • The pain I’m having is in my upper area, in my stomach, not bloating or flatulence.  Paired with nausea and vomiting, consistent with gastroparesis,

We spoke in depth, and until my stomach gets checked out, we are going to try garlic and onion just a miniscule bit. I am stopping anything fatty. I had some chips and oven baked hash browns make me sick.

I have tons of allergies, and damage to my throat due to acid damage, I’m very picky. So, it’s my fault really, I’m not eating such a varied diet.

I do have a Neurologist appointment for the beginning of October ❤ I just have to survive.

We put in the request for the gastroenterologist at the same time, so I am hoping it should appear shortly.  I’m such an optimist!

I went to bed at 2 pm yesterday and woke up at 7:30 This morning, for this appointment.  I woke up disoriented and started yelling. I didn’t expect to sleep so long. Husband took it personally. 😭 I felt awful. We need to work this out. He wants to go to our marriage counsellor,  but the person we were seeing I saw personally. Last I emailed her she answered really strangely. She took my words and quoted them, saying she was sorry I was feeling “awful”. This was right after my head pain, when it was really new and really bad. I was put off and not excited to deal with her again. I don’t know exactly why I was offended so much, but it almost feels like mocking. The mature person would ask about it. The mature person has more energy than I do, I think. I honestly think, she’s moved to a new office, under new rules and the rules may be stricter. But I’m really put off. If it is really important to him, I will suck it up, but it will be mentioned.

Speaking of which, husband paid me a strange yet flattering compliment via our son this weekend. Our son will be diagnosed with Autism when he returns to school in the fall, and he is currently seeing various therapists to assist with organization, motor control, etc. One therapist is leaving to move to a different facility and he had the choice to move with her or stay and work with another therapist. We expected him to make his dad do the talking, but he marched in (he’s 13, he usually goes into the session alone, but he’s not ready to travel alone. Not there, to school, yes. He’s about 11 in maturity, anyway) and essentially fired her. Did all the talking for the hour when he’s usually mute. My husband said that’s like me. I’m good at having the difficult conversations.

Like the time I had a pregnancy scare with my ex-husband? I found him at some stupid place he conned a friend into renting so they could play “office”. I pulled him outside saying “I need to talk to you!” Before I could say one word he said, “I know, you have AIDS.” I only wish I knew then that when people accuse you of something, they are always talking about themselves. I can’t believe how many more years I was in that stupid marriage, too. Definitely not pregnant. HIV-free too. Only 1 STD, and that wasn’t exactly consensual, KWIM. But it was the most easily cleared up thank goodness, no lasting effects. Phew! I wonder what risky behaviour he’d been up to? 🤔

I’m so tired I watched tv today. Just watched tv. Tired isn’t right. Uh. I don’t know the word.

If you’re bored, Naked on Netflix is hysterical. It stars Marlon Wayans Ass, I watched Leah Remini Scientology Series. My god her makeup is Divine! The Scott Petersen documentary about him killing his wife, where I’m supposed to think he’s innocent.  Pfft.

Ugh, I’m starting to have these brief, sharp pains in my upper right ribcage, under my boob when I take a really deep breath. I had it this morning, I thought I could find a good position, I don’t know. I should probably just zone out until I can see a doctor, have people keep checking on me and wipe me down every once in a while.

I am having such a tough time eating, too. I had to miss dinner because of the nausea. I had oatmeal, a half lunch plate of nachos (lactose-free cheese and corn based tortilla chips) the rest at 3:30, and water plus unsweetened iced tea. I’m nervous about this pattern and how long this will sustain me. Losing another 15 lbs would be so cool, but it’s gotta stop somewhere. It’s really not normal to have this metabolism at my age.

Ok. Midnight. I’m going to turn into a pumpkin.

But hey, I did two blog posts! If you are interested in beauty, check out my beauty blog, Squidge’s Beauty Haul this post is on The Ordinary skincare line.

 

Woke Up Like This

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This is me just after I woke up and took out my mouth guard and took off my CPAP machine and pulled off my sleep cap.  This is because my friends on Facebook were teasing me about looking pretty awesome even though it was hot and sticky and I felt awful. I thought this would be a good ‘Me at my worst’ photo.

There is actually a reason for my youthful facial appearance, and it has to do with EDS. Because of our faulty collagen, some of us do maintain quite a youthful appearance.  I’m not certain of the mechanics of it. But it’s a thing. Also, I’ve essentially been in a darkened room for 15 years, wear that damn sunscreen! And I look after my skin as a hobby.

There are some things I am not happy with, of course. I have a wattle under my chin. That may be from the 120 lb weight loss however. I’m exercising my face to try to lose that. I have a pronounced line around my neck that I dislike. My arms are a bit flabby, my boobs are really saggy, I would like a major reduction. My stomach is often bloated from gastroparesis, which I haven’t been officially diagnosed with, but I have. I would like my hair to stop thinning. And the really dry skin that cracks, if that would stop, that would be cool.

I acknowledge these things are nitpicky and minor, and I would only have necessary surgery to correct anything, such as breast reduction, as that may help my back pain or my constant rashes. If I need intestinal surgery, it likely won’t help my gastroparesis. I’m probably stuck with that.

 

We decided to buy my husband a Nintendo Switch for his birthday, only a month early so the kids could play this summer. It was supposed to be here Monday, but it showed on Friday instead. Everybody is rushing through their chores. 😂

 

I think I finally figured out what I was trying to say about jealousy so I can finally drop it. You can’t pick and choose what aspects of my life you want to be jealous of if you’re going to revile me. If you are going to call me a monster or a saint, it isn’t fair to analyze a microscopic part of my life. I’ve made mistakes, some big ones. But if you’re ignoring the big picture, you’re missing everything. And I think that’s what fascinates me about people. Why I dwell on things like this. It’s a puzzle to me.  Because I know if people took into account my whole life they would not be jealous.

(Jealous of ME? I’m nothing! This must be getting like bragging, but I’m sincerely not understanding, I’m so unimportant, I don’t know why anyone would bother, maybe they don’t, though and I have too much time on my hands. This is my conclusion. People often bring this up to me. 🤐)

 

Anyway. I’m spending my weekend relaxing. I have a birthday makeup thing to do for someone! I need to see my kids, my husband. Have a bath.

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😊

Enjoy!

If you want me to do makeup in your favorite colour, or your favorite style, let me know! I’d be happy to try! 😘

Painsomnia, Regrets.

I shared an article with my husband about one of the Teen Mom’s from MTV getting ‘butt and vaginoplasty’ procedures on-camera, grinning away. And he’s been making hilarious jokes all night. No body shaming, mostly about him going along to get his butt tightened when he’s not being relaxed about things.

http://www.ibtimes.co.uk/teen-mom-farrah-abraham-blasted-posting-private-photos-instagram-do-you-have-no-shame-1633533

This was the story, if you want to read it. I hope they aren’t tightening her uterus. Just, no.

 

I’m feeling sort of low. I’m reminded of so many of the accomplishments of my friends, and I had to cut so many things short. I was reminded the other day of a friend I’d had for 15 years, and was insanely jealous. I had no clue about this. That is the part I feel terrible about. I suppose I don’t spend time with people I don’t like, and if I do, I don’t blame them. But she envied, I’ve been told, my marriage, my babies, and my job with a bank. Oh, and house with another person’s income it was easier. I envied her ability to work and do something besides sleep. Her relationship with her parents, her baking skills, her bilingualism. I didn’t get to say those things because I felt it was weird to be nice sometimes. She would accuse me of buttering her up to ask her a favour.

I regret that I couldn’t finish university. I don’t know how I could have made this work. My dad was pretty mentally ill when I turned 18, and he wanted me out of the house. He wanted me out forever so he could have my mom to himself, but that’s his thing. So when I turned 18, I was out. I had no where to go. I ended up staying with my boyfriend, who was 10 years older. He was living in a different province. He was then transferred to a third province. I tried to enroll in school and apply for a loan, and was rejected. Apparently, my parents made too much money, and should be funding my education. So, I’m screwed, unless I’m married or 25. Whelp, there hadn’t been too much interest so far, my parents had convinced me I’d be lucky to get married at all. And this guy was willing, we got married in Vegas in November of 1989. Same Day as Bruce and Demi.

There are some people out there who absolutely loathe me for this. One even called me out in the middle of my 25 year high school reunion. Where were they, though, when I had no other place to stay? When I could have used maybe a decent boyfriend? Nah, I was too ugly. Nobody has actually come forward and told me why they are upset or hurt. I’m actually completely bewildered. I have not come up with any sort of explanation for this. I wasn’t even that close to these people. People are always looking for an excuse to hate you. It’s like a rubics cube.

Yes, my first marriage was brutal is a lot of ways, but I did learn a lot, also. Whatever the case, it led me to my current husband. The place I am meant to be. Sometimes you need to go through hell to get to heaven.

I hear other rumors, though. I hear whispers about my “perfect family” and “privilege” that got me a house in downtown Toronto.

Hey, there. I hear your whispers. I see your glances.

I have some privilege. But don’t you dare forget I worked three jobs for seven years, two of those years while going to school, when I did dip down to two. I have been working since the age of 12, securing them and transporting myself.

I have endured five laparoscopic surgeries while working, most of them taking less than three days off for recovery, instead using weekends to recover. All while in increasing pain, exhaustion, being told I was fat, work out more, eat less, and get over it.

Divorced the first guy, married the second, kids were supposed to fix the endometriosis. Had 2. Got sicker. Finally had to concede working.  Sister in law asks while pregnant with #2 “Why would you have another baby if you can’t look after the one you have?” Because we put my daughter in daycare after I tried to go back to work and failed. Nice. My husband is an incompetent child rearer? Thanks. On LTD.

We desperately wanted a third child, but decided we could not afford financially nor emotionally to support one.

My children, both with Autism, act well in public, but are becoming troublesome in private. School refusal has been a problem with the boy, and I don’t know how next year will be.

So if anyone wants to trade lives with me remember, I envy those who:

  • Can get up and go for a walk
  • Can eat some food, whatever they like without stomach cramps
  • Can get up and go somewhere
  • Can stay awake for more than 3 hours
  • anytime but midnight
  • Don’t hurt all the time
  • Can have some fun
  • Can go dancing
  • let’s go shopping!

 

I’m really okay, my husband is the best. He is so sweet to me. I wouldn’t travel this journey without him.

I suppose someone else (me) being content is really tough for people to figure out. True no drama.

 

Right now I’m in so much pain I can’t sleep.

  • Gastroparesis means my bowels are full and rumbly. They’ll be like this and cramps for a while
  • My neck is screaming in pain
  • I have something across the back of my head that hurts. Long ago head injury?
  • I may have a cyst on my ovary, occasional cramping
  • My back hurts
  • jaw pain from head troubles

Actually, not a bad evening. Going to try to sleep.

 

I Have Two Speeds…

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My symptoms tend to subside in the summer to an amazing extent, now that I think about it. It’s surprising, considering the amount I hurt now.

I essentially have two speeds at the moment. Feeling as well as I am able, which is pretty alright! I can squeeze a good almost five hours out of a day if I rest up appropriately, three if I want to keep going.  That is amazing. My hands hurt and my back, neck, and head are often excruciating, but distraction and movement are good.

Sleep has been a problem, however. I am exhausted at 9:00, I take my sleeping pill and at 10:00 I am wide awake until 2:00 am. Without the pill, I fall asleep and am awake at 2:00. Sleeping during the day means I don’t sleep at night. I’m at a loss. I guess I keep trying until it works itself out.

My tongue isn’t swelling any more, so perhaps it is just getting the last bit of this illness.

Okay, off to tackle the day! 😁 have a good one! Sure, it’s 1:00 p.m. I’m a slow starter. Today, anyway!