Birthday Weekend Festivities!

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I had a quiet weekend. My husband wasn’t feeling well, and is currently lying beside me trying to rest in the middle of the day.  Something he is lousy at. The darling got up after I fell asleep on Thursday and made me a FODMAP friendly cake. It was delicious. I think there is some left. Very moist.

I also received a lovely crystal bunny. It’s called Rabbit with Roses. My husband has been buying me Swarovski necklaces for years. I also collect rabbits. My son also points out there are three roses and three people in the family. ❤

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I spent most of the weekend puttering around cleaning out drawers and sorting my makeup so it’s accessible and neat. Not everyone’s idea of a good time, but one of my favourite things to do. I do think I overdid it a bit, as I woke up this morning a bit sore, but as my husband was taking his temperature, so did I. I’m running a slight fever, so I must have caught something going around here. We need to make time for our flu shots this year. Unfortunately my husband’s year end is October 31, so he’s very stressed.

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As I was cleaning out my dresser, I found this little guy! A Zebra bunny! I collect bunnies, and I collect zebra things, because of EDS. 😊

I received so many birthday wishes this weekend. It was nice. A bit overwhelming! I’m not used to so many people! I got in touch with most people, I think I got everyone. There are a few people I still want to talk to, though.

I called my Grandma yesterday and had a nice long chat. So great. I miss her.

Christmas is already becoming an issue. I’m glad my husband has my back. My in-laws have a separate celebration so the families don’ t have to choose which family to see. My in-laws live an hour away, and last year they hosted and everyone went to a restaurant. I didn’t attend as I was ill. This year, my mother in law was lamenting my absence and was trying to make plans to ensure I could be there. My husband explained there was only a slim chance I could attend if it was in my own house, never mind making plans for me. And she is in her eighties and having trouble with stairs, so she’ s sacrificing a lot. With my head, even though it’s better than it was, I just don’t think the stress of the holidays is going to help it. Plus weather exacerbates the problem.

Next door has construction going on, which is one thing with the intermittent hammering, but then they’re blasting a television set and then drums? Am I in a psychological experiment? 😂😂😂 Duh, I think they are setting up sound equipment.

💜

16 Years!

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It’s hard to believe, but we were married 16 years ago today! We still seem to like each other! 🤣 I know I like him, anyway!

He really is everything to me. He is everything fun in my life. We met on Halloween, 19 years ago. I feel both like I’ve known him forever, and I met him yesterday. Do you know what it’s like when you meet someone destined to be your family? He is my family. We do have two babies. Well, I was pregnant with one of those babies when we got married. I was told I couldn’t conceive, and we should start trying, so we could begin IVF right after the wedding…

Tonight will be a quiet night at home. He is exhausted, I am essentially bedridden, due to my chronic illness. That’s okay, we are homebodies. Restaurants are out, he has potentially fatal allergies, as do I. I have gastroparesis and the FODMAP diet makes eating out complicated.

He is exhausted from work, and I’m pretty hopped up on drugs due to my neck and head hurting so much. Although, Monday I’m going for migraine BOTOX injections. I am to talk to this doc about a neurologist. I’m starting to have fantasies about kidnapping a neurologist, forcing them to treat me, so something needs to happen soon.

Have a great evening!

Fail Day!

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My fails today haven’t been this acrobatic, but they’ve been fun! I subluxed my toe sometime yesterday, so that doesn’t feel really good. I’m being much more of a baby about it than I’d like to be.

My husband has been worried I’m only eating the same thing over and over, so he bought me some chilled shrimp. Now, he was going on and on about making his own sauce, because the commercial cocktail sauce isn’t FODMAP friendly. I happily dug in, not realizing I was eating commercial sauce, and nearly died from the burning of my mouth. Husband had taken the kid to school – it was a late start and I had been up since 4 am. However he seemed confused at my repeated requests for cheese. Perhaps he doesn’t know that cheese is the antidote to fire mouth.

Ah, he just wandered up here on a conference call looking for something that was never up here in the first place. Maybe he’s just stupid. 😂😂😂 far from it! It would be nice to have company.

Sigh. So then, the cocktail sauce spilled all over my fuzzy zebra blanket, and I dropped the remote into it. I wasn’t thinking and I licked my hand where the sauce got on it. Which reignited my fire-tongue. Wah! Here’s me: cocktail sauce all over my hands, trying to stand up without spilling any more or reinjuring my toe, trying to scooch off the bed yelling “fuck” totally forgetting my husband may be on a conference call. Oops. His fault. Somehow. 😛

My head still hurts. My goal is to stay awake most of today. Yesterday I gave up at 2:00 and woke up at 4:00 This morning. I still need to lie down most of the time.

Goddamn I hold my body rigid. I need to stop this.

My days are pretty okay for the mornings, but noon is the time. Every second day I sleep for 18 hours, it seems. I try to change the pattern, but it doesn’t seem to work. I am still trying to find a doctor, but I fear I will not be able to wait. I may need to go to the ER.

I’ve been feeling a bit more social, but that’s all well and good until someone says something stupid. I know I’m sensitive right now and I’m overreacting to a minor throwaway comment, but I should think about it’s great that people see me as the same old me.

I did buy some cute pajama pants that arrived yesterday. They look snuggly. I’m excited. I’m so cold all the time. I can finally wear warm clothes. Layers. People. Layers.

I have been burning up Netflix. My picks:

  • American Vandal – a mockumentary about the most serious of subjects: Who drew the dicks?
  • Big Mouth – the first episode is uncomfortable, but it gets better. Dirty, dirty humour, but you will learn so much. Some of my favorite writers.
  • Evil Things – creepy things for Halloween, this is on TLC, actually, really trashy show about haunted objects.
  • The Exorcist (tv show) – I’ve watched two episodes of this, it is creepy as hell. I believe Season two is on television.

 

Oooh, great, and I’ve lost the remote so I can’t look up any more. Sigh. My day.

💜

Hellooo Nurse!

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Finally, after being in pain all week, one of my friends on here (I don’t know if she wants recognition or not) convinced me to convince husband it was time to get me checked out.

Now we haven’t done nothing, I know my husband put in an urgent call to my regular gynecologist on Monday morning.  We still haven’t heard back. My GP is on holiday the last few weeks of August, with no cover. We would have called telehealth, but they always tell you to go to the hospital.

WARNING: I WILL GET GRAPHIC ABOUT LADYBITS 

I don’t entirely blame my husband, although he sure blames himself. If I had said the pain was bad, we need to go, we would have gone. However, I have a cold as well, with that sore throat. All I want to do is sleep. So I really minimized the pain, as I hoped it would go away.

At first, because I had spotting, I didn’t worry. Then it got heavier, and heavier, with the pain, our theory was my Mirena IUD had started burrowing its way to freedom.

I arrived at the hospital. The one I go to for pain management,  and the ER was fairly quiet. Score! I sat down with one of the nurses,  Matthew, he was a sweetie, even though he couldn’t spell Ehlers Danlos. He thought ahead and put me somewhere where I didn’t have to get up and down. My husband asked right away if there was a place I could lie down and I was able to lie on a stretcher the waiting room. It made such a difference!

I was transferred to a room, like an ER bay, because you know the pelvic exam is coming…

The doctor came in and did a preliminary outward examination of me. When he got to my back, I screamed. I didn’t know that. Well, I guess that hurts.

Apparently, on my chart, it has huge notes all over saying DO NOT DO A PELVIC EXAM UNLESS ABSOLUTELY NECESSARY! This is because pelvic exams hurt me. Very badly. The doctor, realizing this and seeing the preliminary exam, orders 6 mg? Of morphine before we go any further. What a sane and sensible man!

Later, he comes back to do the pelvic exam, and can’t find anything too dramatic. Takes swabs.

Next is a pelvic ultrasound. I have done this a billion times. The technician is awesome. It hurts much less than it has in the past. In the past, I’m not on morphine.

We arrived around 10:30, it is now around 3:30, husband decides to grab some food because we have a lull. This is where everything happens.

The doctor comes in while husband is gone and informs me that the ultrasound shows my Mirena is in the right place, no problems there.

The doc comes back 3 minutes later to tell me there is no indication this is anything but an endometriosis flare up. However, because there was discharge and bleeding there is a small chance there is an infection. They have the culture, but it takes 48 hours to grow, they will call me and we will prescribe something then. Otherwise, many women still get their period with Mirena, (all of a sudden, after 13 years?) that’s what this may be, go home. Follow up with your doctor, you need more pain medicine.

So, fine, we were getting up to go and wending our way through the maze of stretchers and some bitch sitting on her boyfriends stretcher had seen us coming out of the room and stretched her foot out to kick me as I went past. Nice. Bitches in this city.

So, anyway, I’m frustrated. I feel like I’m back at the drawing board. I thought I had this sorted, and it’s reared its ugly head. I need to meet with my doctor, but she’s near impossible to get an appointment with.  So, I’m going to need to consider another doctor. That’s first up.

I don’t think I want a hysterectomy. All advice to date has indicated I’m in pseudo-menopause now. Having my organs removed won’t make a difference to the pain, but will for other things. Will have to discuss with the doctor I end up with.

In terms of diet, I am on FODMAP, and can’t really change that. It’s been suggested I go vegetarian, or fish-based, but I’m allergic to fish, I’m allergic to legumes, which screws up vegetarianism. But I am also allergic to soy. So I’m very picky about my food. I only eat about two dozen items, and most are well vetted for proper growing technique.

Once again, spending the long weekend resting up. I suppose we tackle this new adventure on Tuesday.

I’m going to rest. So tired.

💜

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.

 

Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.