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.

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

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.

 

Transporting my EDS Body

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I don’t get out often these days, but when I do, I have several options. Lets look at them.

Walking

Walking for me is problematic right up front. My lower back pain is unpredictable. Some days are better than others. I’ll tell you a huge secret! No, I don’t feel different after losing weight. My pants don’t fit. I don’t miraculously feel lighter. Sorry to disappoint all the doctors who asked me that. My knees are still as wonky as always. They tend to sublux and cause me to stumble.  I found that wearing a small 1/4″ heel occasionally will help with pain. I don’t know the science of it, but I like it. I have orthotics, thank goodness my company pays for them, they helpyaqsguxbyq1jc immensely. My hips and knees aren’t as sore with them, and I use a cane. After about 20 minutes, my wrist and hand are very sore, but I’m not walking that far, anyway! I can’t walk more than half a block, and that’s slowly on an excellent day. My back is too awful. Stairs are hard. We live in a 2 storey, and I’m upstairs. I need to go to the dentist on Monday, and I’m afraid of both my stairs and theirs. When I first made my initial appointment a few years ago, I asked if the office was handicapped accessible and was told yes. The flight and a half of stairs tells me otherwise. But he’s a great dentist. Even though one time my son was helping me up the stairs there and a kid came running up and pushed by us and i nearly fell down the stairs. I still have nightmares. Good thing husband was behind us and grabbed her before she could do anything.

When going down stairs, I usually have husband or a kid go in front of me, and put my hands on my shoulders for balance. We then walk in tandem, like we were going through a haunted house.

Wheelchair

I do not own a wheelchair, so we have occasionally rented or borrowed one from the site we were visiting, or a rental store. These are good for longer trips, I’m much more comfortable,  I can relax and participate, I don’t get tired right away. My time here is about three hours. On an exceptional day? Five, but that’s with a week’s rest after. That’s pushing it. My husband usually pushes, but friends have stepped in. I have contemplated a scooter, but I want to lose weight first. I don’t want to be a stereotype. (Kidding, I’m actually just vain and cheap. I dont know that I’d use it often because I’m hurting right now, but maybe if I’m feeling better. They are really expensive, so I want to wait until I have a better idea of what to use it for.)

Car

I didn’t learn to drive until I was pregnant with my son, and even then, I never drove on the highway. Shortly after his birth, my pain increased again, and thusly, my pain medication. Did I want to be a new driver on pain medication? Nope! Especially not with two babies at home. So, I gave up my license. Fortunately,  I live in the largest city in Canada, and Ontario provides a non-drivers license. It’s a license that acts the same as a driver’s license for identification for non drivers. It’s fantastic, because I went to get cable hooked up at my new apartment, and they wouldn’t do it because I didn’t have a drivers license. Husband did it for me, but what the hell? Anyway, husband does all the driving. He takes public transportation unless chauffeuring me, or getting groceries. I can’t sit in a car too long, though. We just upgraded our car in 2014. Previously we had a 1989 Caprice Classic. This one is far more comfortable. My parents and in-laws live an hours drive north, so visiting is tough. I only made it once last year. It has to be a really exceptional day. Exceptional days aren’t that common.

Public Transportation

I used to take public transportation all the time. We have a good system here, no matter how many people complain, but I can’t walk the two blocks to and from the stop anymore, and I usually don’t get a seat. If I don’t get a seat, I’m usually falling all over because my balance is so bad. The street vibrations are terrible, they flare my pain incredibly. The stations, if something is out-of-order, the elevator, escalator, I’m screwed. For the number of times I’m out, it’s too risky. I could get hurt so easily. People get so impatient, I’ve nearly been pushed down the stairs a number of times.

Wheel-Trans

Wheel-Trans is run by public transportation. It’s a service for the disabled, and you need to qualify. Once qualified, you arrange in advance for a ride, and a car or Wheel-Trans bus picks you up and drops you off. You can arrange for a return ride as well. All for the cost of a transit fare. The issue is, they can drop you off within an hour of your appointment and pick you up within two hours after. Lets say you have a therapy appointment that lasts an hour. You take 20 minutes to ride there, they drop off 2 customers. So they pick you up 2 hours before your appointment,  get you there with an hour to wait, you have your appointment, you wait two hours for them to get you again, ride the half hour home, nobody to drop off this time. That’s a long day! If you’re in pain? Not happening. And they are on a tight schedule. If there are any screw ups? You are late. I used them a lot when I went out more. It’s easier at night, they’re not as busy, but doctor’s appointments happen during the day, mostly. I had this one therapist. I asked him what I should do if my ride was ever late? He didn’t want to talk about it. I pressed him. He refused, said it wasn’t an issue. One day, my appointment was for 11:00. 10:55 my ride still wasnt there, and it was 20 minutes away. I tried to call the doctor, no answer. Finally, at 11:05, my ride shows up, and I wave him away, what’s the point, right? My doctor calls me at 11:07 screaming at me that we could have had 15 productive minutes. Physician, heal thyself! Anyway, I’m not doing the Wheel-Trans thing at the moment, but it’s an awesome service when you’re out a lot and those cabs are adding up. I’m just a bit fragile, in pain, and lucky to have options at the moment.

Cabs

Cabs are how I get around, probably the most. If husband isn’t taking me somewhere, and these days he almost always is, I’m going by cab. The cab drivers in this city, for the most part, are
3oeduroxib6lo9rxgcexcellent. I’ve only had a problem with a few. Problems include the driver who stopped for me, found out I wasn’t going far enough for his liking, and pretended he was there to pick up a specific fare, after I was sitting in the back seat! Do you know how hard it is to untangle yourself from the back seat some days? That was one of those days! Mr. VITAMIN I referred to in a previous post, and the guy who was bringing me home from the hospital who drove so recklessly I thought we were going to have to go back!

Where am I going?

It sounds like I’m going places, doesn’t it? As of Friday, I haven’t left my house in a month. I have the dentist on Monday, it’s in the neighbourhood, my Botox treatment on Tuesday, and then rest. I’d like for the family to see Hidden Figures, since I live with 3 math, science, and space nerds, but it might have to come out on DVD. Next month I’d like to go to the Bite Lip Lab and get custom lipsticks with my friends. I have two different sets of friends who want to go. I have to choose places wisely. No huge staircases, must have places to sit, be a short walk from decamp to door, not too loud or bright, or smelly, not too far from home, must be a quick exit, have accessible washrooms or we are going to be less than two hours, and not too close to home, either. (Too close and I can’t get a cab. I still can’t walk it yet).

Doctor’s appointments and makeup. Sums up my life perfectly.