Check-in

giphy6

Hi there! I’m pretty sure I am still alive, but the days and nights are blurring together, and I don’t know where I am, (ha! I’m in my bed, duh!) Or what I am doing. (Either wrapping presents or sleeping. I may be doing both.)

The past 10? days have been strange. I have been incredibly ill. I am so exhausted I don’t know which way is up. I have been existing on what my husband (I presume) has been leaving for me. Brie and crackers, mostly. They are the only things that stay down.  I haven’t seen my husband much. I did force myself awake this morning to speak with him. (Plus, I creaked open one eye and he was running around in his cutest boxer briefs, yay eye candy!) I must be feeling slightly better!

I was to be seeing my cannabis doctor today, but I can’t. Short of a stretcher, I am not in any condition to be going anywhere. My prescription runs out mid-January, so I do have some time, but I need husband to be able to take me there. They have grown fond of him at work. Problematic. Now, the doctor has a remote program I may qualify for, if you’re sick enough, and if you remember last time I went I was forced to walk due to construction and sobbed through my appointment. They have also started a VIP program for $300 per year, which has something to do with remote appointments, but the info was vague, and my husband was the first to call, so… I am not thrilled about two tiered medicine. I am very thrilled we could afford $300 a year, if that is right. It goes with my husband being so beloved – and he wouldn’t have to take a full day off. He could work from home, and take just however long for the appointment. Such a relief for our family.  (Yes, I am aware this makes the doctors sound sketchy, I think they are on par, frankly. Are they money hungry? Hell, yes!)

I feel terrible I haven’t seen much of my kids, but I have been getting up every morning when my alarm goes off during the week at 6 am, and weekends at 9, but I was up around 8. I have seen my daughter during the week, and my son on the weekend, so not much has changed. They’re teens. Always stuff going on. I always want to spend more time.

In Aquatic news, one of our Elder Pleco died yesterday. We are quite upset. However, downstairsn, it seems we have our second litter of bushynose pleco! We didn’t intend to have them breed, but, here they are!

20171219_094400.png

I found this hilarious, I am tempted!

 

From my favourite advice column:

Not an Act

Prudie advises a letter writer who constantly gets questioned about her disability.

Mallory Ortberg, aka Dear Prudence, is online weekly to chat live with readers. An edited transcript of the chat is below. (Read Prudie’s Slate columns here. Send questions to Prudence at prudence@slate.com.)

Readers! Ask me your questions on the voicemail of the Dear Prudence podcast. Just leave a message at 401-371-DEAR (3327), and you may hear your question answered on a future episode of the show.

Q. Not faking it: I am currently disabled. I’ve worked my way up to being up and about for an hour to two each day. Whenever I go out, people say the oddest things to me. Today, when I parked my car, a man came up and said suspiciously, “You don’t look disabled.” I said I just had surgery and rushed away. This happens almost any time I use my handicapped tag. Friends will tell me that I don’t look sick, or that I look great, and then take it personally when I say that I can’t go out for long or go to events. One of my best friends today asked if I had just tried increasing my pain tolerance. I never know how to respond, and knowing that these interactions are coming makes me anxious about leaving my apartment. What can I say to strangers who confront me about my disability, and to friends who don’t get it?

A: This will hopefully serve as a reminder to all readers that not every disability is immediately visible, and that it’s not the job of the general public to monitor people with handicapped placards for signs that they “really” need them. You don’t owe strangers a damn thing, much less an explanation, and I’m so sorry that so many people have taken it upon themselves to demand one of you. Feel enormously free to ignore them.

Getting this sort of treatment from your friends seems so much more painful. I cannot imagine why your friend would say something as amazingly stupid as, “Have you tried just feeling less pain?” That’s worth revisiting, especially since you say this person is one of your best friends. This is not something you can simply decide to ignore, and your friend should apologize for suggesting you just “get over” something like chronic pain. I hope there are people in your life who understand that you are dealing with a new reality, and who are looking for ways to demonstrate their care and support, rather than demand when you’re going to “get better.”

 

 

I am thrilled I get to miss the in-laws Christmas again this year, as I always get treated with suspicion. The first 7? Years of my disability leave my SIL would ask if I was working yet? Although, I have thouroughly explained my illness to my parents, and my Mother has asked me 3 times if I am coming up for Christmas.

I do hope you are having a wonderful holiday season if you are celebrating!

We celebrate Christmas, and I am currently trying to wrap what I can day by day. My sister is coming to visit, she has been teaching English in China, and I haven’t seen her in a couple of years. She will be here after the holiday. I have no idea when, but hey – all will be revealed.

I’m desperately trying to rest up. Taking my vitamins. Staying warm, Husband knows he will get sick as soon as he stops.

Ok. I am exhausted. That was far longer than intended, but good to share.

Sending lots of love and light!

Hang Head, Feel Shame.

I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.

20171031_211201.jpg

Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!

Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!

It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!

It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.

Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.

So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.

I did have some fun with Halloween costumes.

20171103_100032.jpg

Beware the Rainbow Kitty!

20171103_100139.jpg

Who’s the cutest zebra you’ve ever seen? 😛

Hope you had a great Halloween!!!

Here’s hoping things get back to ‘normal’ lol!

💜

 

Gurgle

giphy6

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.

💜

Stunned.

giphy3

Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

Inconvenient Sleep Habits

In the first place, my body is being a big jerk. It won’t let giphy15me sleep at any time there is another person in this house asleep.  On top of that, I’ve caught my daughter’s cold. Which isn’t a horrible one, it’s just that I’m a terrible wimp when it comes to having a sore throat. I find that pretty funny, actually.  I am also suffering with yeast infections for some reason. I am having incredibly awful pelvic and back pain. If it’s not gone by morning, I’m actually going in somewhere. It’s incredible. I don’t know what is causing this. I was having terrible problems for almost eight months about two years ago. I had fungal infections all along the inside of my thighs and my under my breasts. My pharmacist recommended cranberry tablets. It was funny how I discovered this. My husband is in charge of all my medicine. He had asked the pharmacist about this problem and received this answer. I had been taking them for a while before I noticed. When I asked about them, I received an explanation, which I denounced as hogwash. Husband asked if the thrush had cleared up, to which I had to admit, yes it had. Unfortunately, I have been not so great at taking my pills, as I sleep at odd hours, missing some. I need to pay attention, get back on track.

Although, that is difficult when you’re curled in a ball whimpering.

I’ve found that around midnight, I usually start crying. It doesn’t last long, usually less than 30 seconds. I’ve never gone longer than 3 minutes. But I have had a few minutes to myself to be scared and break down before I put my face back on. The everything will be ok, face. Or maybe I sob out of self pity. I have some of those, too, I’m certain.

I can’t deny I’m stressed. My mother needs support and I can’t offer it to her. I’m likely the only one, besides her sister, she has. My husband is too overworked to give me the support I need. I ask for things, 10 minutes of his time, and it’s to the point where this is becoming problematic to schedule. Tonight, I wanted help with two rather unimportant things, I waited until bedtime at 9:00, but almost didn’t accomplish them because of all the distractions etc. He keeps telling me he answered me when he didn’t. It’s so frustrating. I know it’s not my memory, either. Sigh. 11:00. We need a better strategy.

Trouble with midnight painsomnia is I can’t vape or watch TV 🤣. Our sofa is not a place to banish people to. I can’t make it downstairs on my own, either.

I’ve been cleaning out drawers. Nesting. It’s my favourite thing to do. It’s been hard work, but I always feel better afterward.

Can I ask a question of my friends who are on the Autism Spectrum? How offensive is the term Aspie? Or Aspy? Here’s why: I have so much to talk about with my family, with three of them being on the spectrum. Daughter, diagnosed Aspergers, husband not diagnosed, but clearly on the spectrum, and my son will be diagnosed when he returns to school. I have so much to share about parenting and what living with these folks is like, I was thinking of…ugh, a third blog. Ugh. I know. But the name Three Aspies and a Zebra sounded good to me, I just didn’t want to be offensive. Open to any good name suggestions! Speaking to the blog, for example, my kids have no idea when people are joking. My daughter went to the CNE, I asked her to buy me some donuts, which are off my FODMAP plan. She’s 15, btw. She started crying because she didn’t know if I was kidding, and if she should really do it because they might hurt me, and she didn’t want to be responsible for me getting sick. She’s so sweet! 💜

My husband is snoring sweetly beside me. I want to whack him with a pillow. Nah, I know that if the kids stir or if I call out, he will be up. His beloved aquarium was acting up earlier, so he’s annoyed. He gives time to the kids, and I can’t begrudge my own kids and his source of income, as he was finishing a course for work, too.

I just can’t stop needing what I need or feeling what I feel. Here come the tears. Must be midnight. Exactly.

Ah, going to go find some cat memes. I always get melancholy when I’m sick. Boo.

💜

 

Not-so-Brief Update

giphy7

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.

 

New Hair!

20170802_073538

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.

20170801_171915

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 😁.