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…

💜

 

 

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.

💜

 

A Word on Munchausens Syndrome

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I have been reading a couple of articles on Munchausens, Munchausens by proxy, and have watched the documentary on Gypsy and her mother, and I find Munchausens Syndrome quite fascinating. I don’t understand why someone would choose to fake sick in order to gain attention. Yes, the answer must lie somewhere in the pathology of the illness, but how does the attention actually work? See, I have more than one verifiable illness and I am not drowning in pity and attention. Perhaps it’s because they don’t actually have the illness in question and have the energy to troll for it? Maybe because they usually invoke CANCER which for some reason gets everyone’s attention. I’ve never understood why cancer is held up above all other disease. It’s interesting to me. It is very serious, usually, don’t get me wrong. Maybe because we all know someone with it.

I mean, not that I want attention so much as it would be nice if people noticed the struggle and thought I was doing awesome. It’s better than being invisible.

 

Today went downhill fast.

My head is really in bad shape. My neck is awful. I didn’t sleep well last night, the pain was so distracting. I’ve been eating chocolate trying to soothe, which is a bad sign. I should curl up and either relax or sleep. My face hurts so much. I have intense abdominal cramps, and I’m spotting again or still, I’m not sure. It’s getting to the point where I can’t just wait it out much longer. I don’t know if the EDS clinic has a gynecologist on staff. There was one at the pain clinic, and I did see her privately, but it was kind of a pain to get in. My GP will not deal with this, so I’m not certain what to do. There’s always the possibility my Mirena has pierced something. Not pierced, um… shifted and embedded somewhere. I’m on a lot of medication, who knows what I feel and what I don’t? Sigh.

I need to see to a nap. I’m becoming incoherent. And grouchy.

💜

Muddling Through

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All in all, I’m not feeling too awful. I hadn’t had a great time sleeping, but once I’d figured out my feet haven’t been warm since… I can’t remember, it was time for some socks. I usually can’t sleep with socks on, but my feet liked this, and I slept like the proverbial log. I thought I should look online to see if I could find some slippers. Not an easy thing in August. I may stick with the socks with the trippy bottoms for now.

I was miserable last night. I had a couple of days where I had slept for 20 hours or so, and my meds were all screwed up. My knee kept popping out, my face and head hurt, my back hurt, I had cramps, I couldn’t remember anything, and I was lonely.  I was whining to my husband that I couldn’t get comfortable, and I was freezing. I wanted more pillows, and he got this happy look on his face. Apparently, he had purchased all these pillows and didn’t know what to do with them. So he immediately piled four pillows on me and produced three from under the bed. Such comfort!

My sheets are so gross and smelly. I’ve been so sick, husband hasn’t been able to get me out long enough to change them. This weekend. I am so excited! The kids’ bedding is changed every week, but I’m always asking him to leave it just one more week, we will be fine! Ugh.

I am so tired these days. The heat, the pain, not moving, the stress. It adds up. I’m usually better after my shots, but I haven’t heard from the clinic yet. I’m not eating as much, either. I get weighed on the weekend, usually, too.

Today it’s mostly my head, my back, and my pubic bone giving me trouble. My knees are acting up when I get up to use the washroom. I try to straighten them and they pop and crack, quite painfully, as you see the patella slide around, or it knocks sideways before sliding into place. God, it hurts.  I’m trying to rehydrate. Last night I had the worst case of dry mouth. It’s probably from all that time asleep. I should have taken in some water. Thunder storms and rain today. The big stick that pokes my wounds.

My boy is a grouchy today. His sister is being sweet to me. I was thinking just yesterday how I will missthem when school starts. Check that. Not the fighting. Sigh.

As long as my feet are warm, I’m sleepy. So it’s naptime. I’m nodding off.

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.

 

Rough Night.

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I have been having horrible abdominal cramps the past couple of weeks. I was diagnosed with Endometriosis in 1989. It was originally thought to be the source of my pain. I have been fine since I had my kids, mostly due to the Mirena. I’m on number 3, and am on year 2 I believe, so nothing should be wrong. I haven’t had any spotting. In fact, it had been working miraculously in helping me with cramps.

Over the past week, I’ve had discharge as if I was ovulating, (that’s one thing about chronic illness, being really in tune with your body. I knew exactly when I was ovulating, which made pregnancy a snap). The cramps were slightly menstrual-like, but more sustained ovulation-like. Mittelsmertz, if you will. Yesterday I was so distracted I even forgot my medication all day!

I went to bed early, I was generally uncomfortable. My head is hurting at the back. Around midnight I woke up screaming with intense abdominal cramping. Did I have a cyst burst? It was just on the right side. The pain lasted almost 20 minutes with me just babble scream-moaning for that time. It eventually subsided, but I’m aching intensely this morning. It could be that I caught my ovary or twisted it a bit. Or a bit of adhesions ripping. It could be anything. Well, not anything. I don’t think it’s actually a hedgehog on a rampage. It just feels like it.

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This was under the gifs for Endometriosis.  I thought it completely appropriate.

I had a horrible time trying to sleep last night. I just couldn’t. I took extra meds, but it didn’t help. I read some junk on my tablet.

I have my makeup in stacked bins beside my bed. At 10:51 pm. The past two nights, a whole row has fallen over. 😮 spooky! I know my family has been in rough shape because we’ve all been in bed before 9:30 both nights.

I’m curled up in a ball, trying to amuse myself. I’m focusing on taking my meds, having some fun, and taking things a bit easy. I don’t know quite how this will play out. My gynecologist is part of the pain clinic, for the endo part anyway. I don’t have one for other stuff.

The BOTOX shots help a ton with any cramping or discomfort. I had forgotten how much pain this can cause.

My husband might just swaddle me and leave me at the emergency room. 🤣 Like he was giving up a newborn. What should the note say? Tag you’re It? She’s your problem now?  😈

My husband had no idea what to do, so he did nothing. I’m not exactly thrilled. We should probably have a discussion.

Another issue with my doctor being absent is he made a lovely compound for me, well, ordered, and I’m now gingerly using it. I don’t know if I can get it again. It has gabapentin and ketamine in it, it’s a lotion, and it’s unbelievable. It fixed my abdomen earlier. I don’t have another doctor for this.

It was upsetting when I mentioned my doctor situation on Facebook, people started speculating he was ‘up on charges’ that is such dangerous speculation. I took the post down. I wasn’t strong enough at the time. I’m still worried about his health.

Anyway, I need to rest. More soon.

Oh! I’m down to 188. This was the 20 lbs I was keeping for emergencies, remember? Heh. Oh well. Eating is hard. Nausea is pervasive. Heartburn is so often. Even though I’m on the max dose of medicine for it. I just rechecked the BMI charts, and I need to lose 15 more lbs and I’m normal weight. That blows my mind. I was certain I’d never lose this weight. I suppose I like being slim. I’m not so certain I like the attention from men. Wait. I like the respectful attention. I don’t like the disrespectful attention.

Ok, bit of rest now. 😊.

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!