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!

❀

So. Much. Pain

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My head and neck are absolutely killing me today. My face hurts. My joints hurt. My elbows and wrists hurt. No amount of medication or rub on medication has been working. I’ve spent the day lying in the dark watching Netflix. My daughter had trouble attending school today (that’s a whole other thing) but she came and sat with me while we watched some bad horror for a bit this morning. We don’t usually, as I don’t want her to be associating reward with staying home.

I’m not certain on next steps. I may have to just go to the hospital. This pain is wearing me down. I’m eating more chocolate than usual, which I often do when I want to be sleeping. It helps keep me awake. I want to stop, but I may sleep full time. I see a doctor on Monday for migraine BOTOX. Can I coax a few needles to the back of my head? I’m also to ask about a neurologist.

Still seems like a long time right now.

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The Migraine Dance

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I don’t really know what is going on with the back of my head, but it might be a migraine thing, so let’s call it an offshoot of my migraines for now.

I’m learning to dance with them. They are leading. I need to lie down when it’s time to lie down. Sleep when it’s time to sleep. It’s rather like having a newborn in the house, only I’m the newborn! Although I do like the idea of rebirthing myself. That may be too deep for my brain at the moment.

This does mean I’m keeping irregular hours. I did see my

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If we ever have competitive napping, though… I nap hard!

husband for a few minutes this evening, as I woke up to use the washroom as he was going to sleep. So much for my 4 hour nap. More like 10. I will sleep more. It’s 1 am now. By 2 I should be ready again. I need 18 hours every 2nd day.

I’m almost ready to plant myself at the ER.

My neck and back cracked loudly today, but the pain ended up intensifying in my neck. My back feels better. My toe feels like it’s healing, too.

I am supposed to be getting the Botox shots for migraine on the 24th of October, I think. The clinic can at least do that. I’m hoping that helps, because it did help a bit in June. I do tend to sleep more before my shots, as the pain gets worse and I’m 2 months without now, so I guess it isn’t abnormal for me, but geez, I would like to see my family.

Five minutes should be enough. 🀣 they’re teens!

I know this sounds like exactly the opposite of what I just said, but it isn’t. Those times I am awake, I am pushing myself just a bit to accomplish things. Blogging, putting on makeup, organizing this or that. At least when I’m sleeping I don’t feel like I’m not accomplishing anything, either. I’m trying to be awake between 6 am and noon, at least. It seems to be my best time, and I am happy I’m getting a few small things done.

Life. Still good. Bitchy as hell, but I have some great companions! 😁

❀

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. πŸ˜‚πŸ˜‚πŸ˜‚ 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. πŸ˜›

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.

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The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital. Β My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! πŸ˜„

Hugs to all.

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Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. 🀣 I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” πŸ˜‚ she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around. Β Or is sleeping. 😊

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes? Β I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! 🀑 Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

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PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. πŸ˜„

Gurgle

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I slept until 3:00 this afternoon. Β 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.

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