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.

 

Netflix and Nausea

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My Zebra Strong tee arrived! Booster.com helps charities with fundraising, so they are a cool place to check out.

The past couple of days have been interesting. Yesterday morning I accomplished quite a bit. I cleaned a bit of my bed area and my outstanding computer files. I’m transitioning from a Yahoo address to a gmail, so I did some of that.

I napped all afternoon.

I’ve been watching a lot of Netflix. Mostly Documentaries, interspersed with Embarrassing Bodies, which mostly involves sexually harassing the male doctor, but I’m alone in my room, he can’t hear. ☺

My head hurts. I couldn’t keep down breakfast. I’m almost used to this pain now.

My memory gets really lousy as the day goes on. It’s awful. I did go on a journal spending spree and got some nice ones!

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There are some dotted pens. They are cute! I bought a proper Address Book. I won’t have to fire up the computer every time I need an address! There were three plain journals, and two holographic/iridescent journals. I’m in love with holographic or iridescent products. ❤

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Pretty! And, of course, you can see the reflection of the ring light.

It’s been thunderstorms like crazy here! 😮

I’m incredibly bored, so I’ve made Amazon my bitch, and it’s giving my husband heart palpitations. I’m terrible, I can never do just one thing at a time. The tv is on, but I have to be futzing on my tablet or organizing a drawer or writing a list… I need to Zen more. I should slow it down.

Although I felt awful today, I’m feeling better than I was this morning. My back doesn’t hurt as much, my head is okay. I might try a quick look.

It’s amazing how your pain can change. I know I’m delicate today, though. My abdomen is threatening cramps if I’m not careful. Is that the Endometriosis acting up?

Today will be quiet, with some masking, skincare, Netflix, naps, photos, and maybe a makeup look if I can.

Moving slowly, though. No need to rush!

Hope you have a great weekend!

 

 

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.

 

Friday Evening, Before the Long Weekend

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My tee from the Ehlers Danlos Society Fundraiser is here! I think there is another one on now. Go to Booster.com. There is also a Zebra Strong campaign that looks interesting. I’m waiting for my shirt from that one.

There have been thunderstorms all week here, and the humidity has been awful. My bedroom is hot as hell.

My head pain has been bad this week. Still haven’t heard from this neurologist. I’m three weeks away from my Botox injections, so I will follow up with my pain guy. Unless I end up in the hospital, first. I’m having terrible abdominal pain. It feels cyst-like. I’m curled up in a ball again. Glad we have the new tv. Netflix is easier to watch. They also have True Stories of the ER, which I love. The acting is awful.

Eating is awful again. My digestive system is super slow. I have lunch, and now it’s 7:15 and I’m still not hungry. Another hour maybe. Really, my neck hurts so much, I can’t think about it at all. The nausea comes and goes. I’d rather go back to sleep. But that’s no life.

20170804_185439Please ignore the clutter, but that’s my makeup stash in the background. I bought this awesome gadget from Kikkerland. (Kikkerland.com) it’s a tablet holder, and I currently have my timer on it. It attaches with a clip, and has an adjustable arm. It’s only about $20. I bought this after video messaging with my cousin and finding it so difficult to hold my tablet. Now I can watch tv shows, Netflix, listen to podcasts, and it also takes fantastic photos.

Another neat gadget I found, also at Kikkerland, is a 20170804_185357phone holder. I was forever losing my phone, and this way I always know where it is, I can find it easily, read and reply easily, and it was only $15! I’m delighted. This also attaches with a clip and has an adjustable arm.  Don’t laugh at my BlackBerry. Husband is in IT security and insisted on BlackBerry. Also, mess. As you can see, I use the IKEA metal rolly cart for a bedside table, and it’s amazing!

This weekend I plan to do some serious rest and relaxation. My XL elbow brace arrived, I need to do some serious skincare, my skin is in need of masking, I need some extra rest, and I have extra correspondence I need to catch up on.

I’m trying to get organized in many aspects of my life, however I need some assistance. Getting this assistance is almost as tough as doing it on my own.  Sigh.

 

Onwards. ❤

 

 

New Hair!

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I forgot to show off my new Hair! It’s usually curly, but we put in a treatment to reduce the frizz and tangles. It’s better if the blowout stays for a couple of days.

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My family went out and bought me an aromatherapy diffuser. This one fits in your cup holder. Because I don’t go out, it’s small enough that I can manage it. I can pick it up to fill it. It’s pretty powerful! We have bigger ones, but this one is more manageable.

I’m still feeling worn out, but I’m looking toward the weekend for some rest. I can push until then. Gently. I’m not going to exhaust myself, though. Just makeup playing 😁.

Braces Galore!

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This looks pretty strange, but it’s called the Turtl travel pillow, and it is so comfortable! I have a couple of pillows to give me neck support, but they are the traditional travel pillows. This one has the support in the front, or to the side if you prefer. I was considering a neck brace until I see the doctor (I have no idea what the hold up is). But was afraid of injuring myself further. This seemed a nice compromise, and I have had a lot less pain!

$34 Amazon.com

 

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I found these knee sleeves. Available in 3 sizes, they come in all four colours. Naturally, I bought the first set, made sure they fit, bought the second set.

What I like about these is they don’t have any specific compression seams on them. Most of the items I found have seams along them designed to support your patella and offer extra support and compression. I don’t need that, and I find extra seams tend to bother me. Plus the extra pressure tends to slide my knee out of place.

$16 Amazon.ca 4, one of each colour.

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I bought two of these elbow sleeves, similar to the knee sleeves, they have no stitching on them. Unfortunately, they are too small for my fat arms. I’ve ordered two in extra large, they should be here Friday, even though the guide suggests medium. Braces are tough to fit. I’m 5’8″ and 193 and I just get the biggest in everything. I actually have fairly slim legs, but I guess with swelling etc. And the fact I’m not wearing this for merely a workout, this must make a difference.

About $16 Amazon.com

 

I have a couple of braces for overnight for my wrist, and a hard brace for my arms, but I’m thinking of a soft brace for my wrists, as they get so sore.

One of the advertisements had a waist trainer for back pain. I was wondering if that would have any value at all. It was a legit brace company, and didn’t look like a fake trainer like the Instagram world wears. I’m not sure. I wonder how my stomach would react. My abdomen, my digestive system.

Let me know if anything appeals and you want the link! ❤