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.

 

Upsetting News

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Ugh. My husband called the pain clinic to harass them about my not getting callbacks. When he listened to the Clinics outgoing message, he learned that my doctor, the head of the clinic, is away indefinitely.

I’m frightened.

Firstly, he did not look at all well at our last appointment. He is quite overweight, and looked pale and well, grey.

Secondly, he is not a young man. Going by his graduation dates, he is in his late seventies to early eighties. He has been pushing himself hard, working at least five days a week at the clinic, and travelling all over the world lecturing on pain management. I do hope he is able to recover.

The clinic has assured us it is still running, but, selfishly, I have my shots in two? Weeks. Nobody is as talented as he is. I’m going to get some hesitating ass. Nightmare.

Currently I have referrals out to:

  • Neurologist
  • Gastroenterologist
  • The hand and knee specialists retired so I’m waiting for the EDS clinic.

My heart test came back, it was ‘grossly normal’. Now the EDS clinic has everything they need, and the Manager said we should hear from her within a month, if not to contact her to find out what is going on. I don’t expect an actual appointment, but a date gives me hope. ❤

My good friend is moving an hour and a half out of the city. I dont get to see him much anyway, but he was offred a great spot in a retirement home and he can’t pass it up. We talked for an hour last night and damn it cheered me up!

It’s just so hard to get together with people when you feel lousy, and your kids take over the house, it’s not that big to begin with, and you can’t even serve tea. You don’t want to treat your family as staff, but you want friends to yourself, but as adults, do they come over and hang out in your bedroom? What the hell, sure! 😂

I don’t like this change nonsense.

If you can pray for my doc, I’d appreciate it. I hope he just needs rest.

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. ❤

 

 

Friday Morning

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I did manage to get a Beauty blog post up for today. I’m pretty pleased with myself. I took the photos when I had a pain respite one day ( I’m having trouble remembering what day it is) and wrote the copy slowly yesterday morning. I slept from 2:00 PM until 9:00, took my medication, looked at my email and futzed around until 11:00 PM.  Then slept until 6:00 this morning.

This morning so far isn’t too bad. My neck and jaw is pretty sore. The back of my head hurts, and I have a headache starting to wrap around my head. I’m so nauseated and dizzy, too. I have wicked bedspins, it’s like being in a standing MRI, or when I had that barium swallow. Instead of just spinning flat, I actually feel like I spin top ways, then sideways. It’s awful. Better lying down, best on my side. I’m probably sleeping so much just to be away from it.

Things are definitely worse when I sit or stand, and get progressively worse the longer I am upright. 

I do feel much better, though. We are keeping an eye on things, and I am not having as much head pain as I was having. My memory and vision are both not really good either, just a bit hazy, but not alarming. That kind of just woke up feeling.

We’re pretty sure I’m not going to die from this, so we will evaluate on Sunday whether we go to the Emergency Room for evaluation. If I keep improving, then we will just try to be low-key and calm for a few weeks. Otherwise we go.

I took some daytime cold medicine this morning, so maybe this is what’s helping.

I have had so much good support through this. When my brain returns, I will thank you properly and link a great article.

Also, two Facebook friends have admitted to reading my adventures. That matters so much to me, you don’t even know. Sometimes I feel I’m passing through this life unnoticed.

Am I having a mid-life crisis on top of everything? 😁

I’ve found, as an adult, maybe I haven’t been so great at choosing friends. The ones I’ve clung to have kicked me, and the ones I’ve dismissed have shown themselves to be the gems. I’m probably not in a good space and haven’t been for a long time. I don’t think it’s something I can fix at the moment. It’s just a musing.

I need to remember I’m in survival mode at the moment and act accordingly.

I have to put things in perspective. Be selfish. Be okay with being selfish. That may be the toughest part.

I was thinking about it. So what if people think I’m an asshole? For the first time in a long time, I like me. I don’t have the time and energy to explain myself to people who don’t understand or listen anyway. I’ve been exhausting myself trying to be wonderful to people who don’t appreciate it anyway. I’m tired. I’m tired of being nice. I’m tired of sending out care packages and getting a half-hearted ‘thanks’. I’m not a grandmother!

Anyway… rant over. I share a birthday with Dennis Miller. It comes naturally. 😂

OK,  Zebra peeps! I’m going to lie really still, because I just moved my neck and it hurts a lot now. Have a great day!

Mellow Afternoon

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I just skimmed my post from the middle of the night last night. Wow, my spell predictor is aggressive! I usually fight with it, but I was so tired last night. Husband was snoring, and the kids were wandering around. I didn’t feel right sleeping. I was also in pain. I did drop off, finally. Husband has meetings all day, so he’s busy. Fortunately, boy’s therapy was cancelled today. He usually only snores like that when he’s congested or exhausted.

He went to his usual grocery run this morning and bought me a plush blanket to wrap around my wedge behind me. I can snuggle into it. It’s gorgeous! It makes me feel cared for.

You know, I read these articles that go viral about girls feeling sad, and their boyfriends buy them three things from Sephora. I devised a spreadsheet to track my purchases, as my memory is bad. We know what brain fog does! I spent, with permission and encouragement! over $1500 in treats of mostly makeup last month because my husband felt I was feeling low. Which isn’t to show off, there were some major limited edition drops last month that needed to be acted on immediately or not at all. This didn’t cause us financial hardship, I’m trying to say this without sounding like an asshole. It’s not, though, like we had to go without food.

But that’s only a very tiny thing compared to managing my pills, and being at every doctor appointment, treatment, surgery, dentist appointment, rearranging his work schedule so he can. When he is home, he runs upstairs at every buzz so he can get something I need or pick up something I dropped, or bring me food, or rub my back. He makes my phone calls, our kids’ phone calls, he takes them to the doctor, too. He’s been doing this for at least fifteen years. Although, I used to be able to attend some doctor appointments on my own, so eight years.

When he’s not at home, he’s in touch by text or phone, checking up or checking in. Working hard and excelling in his career. Never taking an actual holiday, in fact violating HR policy by taking days piecemeal. But when forced to take days off is bored.

He crawls into bed exhausted every night from cooking our meals, quelling our anxieties, and making us laugh through it all. When we try to credit and thank him, he dismisses us, saying he doesn’t do anything the average Mom doesn’t do.

I’m a pretty lucky person. I wish I could properly thank him. Yes, I say thank you all the time! He waves me off. I love him more than anything. It’s the best thing I can do 😍!

Have a wonderful day, Zebra friends! 😘

Unnngh

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I’m so stressed. Yet it’s mostly self inflicted. I mean, I think the pressure is self inflicted.  Ì ended up sleeping a lot again today. I couldn’t stay awake, and my back and abdomen were just screaming in pain. I must have overdid it yesterday. It’s so irritating that I put on makeup for 20 minutes and it caused me to have to sleep for the day. I’m at a loss as to how to cope because there is just no help available until my doctor appointments unless I go to the hospital. Honestly, what can they do for me? I mean, besides berate me for wasting taxpayers money. Never mind the people going in for sore throats because their doctors office is closed.

My husband is working hours and hours, I haven’t seen him in days. I miss him. I also have to have an uncomfortable conversation with a person because they are doing things that are crossing boundaries and I’m not happy. I’m too exhausted to deal with this. I just want everybody to leave me alone, except the people I don’t want to leave me alone. 😁 yeah, it’s just as bad in here.

I don’t want to sleep my life away.

Hope you’re having a great evening, Zebras! 😘