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! ๐Ÿคฃ 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!

โค

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. ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ 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. ๐Ÿ˜›

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.

๐Ÿ’œ

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. ย 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. ย 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. ย 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…

๐Ÿ’œ

 

 

Mercury in Retrograde

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Mercury is supposed to be in retrograde the last two weeks of August, which is why I’ve had this horrible feeling of dread. Or so I’m telling myself.

I was so restless last night, I just could not settle. I was tossing and turning. I had to strip off my nightclothes, as they were getting all twisted up. I tried to make myself a nice pillow fort, but it didn’t work. Mostly, I kept swallowing air and having to sit up and clear it. Very uncomfortable. Not so ladylike, either.

I did fall asleep around 2:00 PM, though, and sleep until 9:00 PM. I usually have no trouble going back to sleep. I’ve been just exhausted, especially after getting outside to see the eclipse! (I will post about that soon!) . ย At one point in our history, people used to go to bed around 7:00 PM, sleep until 11, be awake from 11 until 1 and then sleep from 1 to 5 or 6. I could live like that quite happily.

I don’t know if you believe in numerology, I tend not to, but this year my age is divisible by 7, and those do tend to be big years where I re-invent myself. I feel different this year. I have a new outlook. ๐Ÿ˜Š

I bought yet another elbow brace. Size XXL. ย Now, I’m not that big anymore, why do I need an XXL? Otherwise I’m ripping them off in agony in the middle of the night, only after a few hours. This one lasted seven. I do feel better, but woah, it’s sore. My hands are sore, too. I’ve been trying to rest them, but you really need your hands! XXL is pretty tough to find. I’m actually using sleeves, not braces. I will save braces until I’m fitted by pros.

Yesterday was supposed to be my BOTOX injections. ย I haven’t heard anything from the clinic, but I’m doing amazingly well, considering. I’m not having that much head pain at the moment, but it does ramp up quickly as the day goes on. I’m having a ton of abdominal cramps. I am wondering if my cpap is contributing to my swallowed air. I need another sleep test. I’m to have them for every 20 lbs I gain or lose and I’ve lost 115 lbs without any follow up. It’s straight up due to my mobility. And, the pain therein.

And of course, just the stress. I feel stressed. I don’t really know why. Maybe it’s the start of school again. I worry about my kids. My boy didn’t have a great year last year. Grade 7 sucks, though. I need to focus on being relaxed today. My breathing. Relaxing. Perhaps some organization if I can. I love that.

My corner of the bedroom is bringing me joy. I am organizing things so they are easily found and accessible. I have a bunch of trinkets and items to make me happy. Netflix on the television, my makeup organized and close by. Masks and makeup products. Some cool magnifying and fisheye lenses, a zebra striped cuddle blanket. Enough braces to brace an army. Iced tea and lip gloss.

Life is good.

๐Ÿ’œ

Growing Old Together

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Yesterday turned out to be quite hellacious for me, pain-wise. We’ve been having a lot of rain and intense storms, as has much of North America, I think? I’m very sorry, I can barely concentrate on what goes on in this room. It’s supposed to be a mixed bag this summer, from what I understand. Hot, cold, rainy, all over the place.

Back to yesterday, my treatment is coming up either Tuesday or the Tuesday after, my husband isn’t certain. Which means the last injections are wearing off a bit, it doesn’t always happen, but usually. My bet is on this Tuesday, since the low-level headache started on Sunday of last week. It’s usually the first sign my treatment is coming up. It’s not that bad, it’s like a mosquito buzzing, annoying, but livable.

Where were we? Yesterday. Thunderstorms were gathering all day, and I could feel that tension in the back of my head. It was not at all pleasant, and began to creep down my neck. It felt like I had something out-of-place and it was pressing? It hurt so much.

giphy31By 9:00 my husband came to bed, and I was really hurting. I was trying not to move my neck, and it was tough to think. I had my neck pillow holding me steady. It was like something was pressing on something leading to my brain, or, like Homer Simpson, I had a crayon up my nose.

We chatted for a bit, snuggling, and he tried to boop my nose, but missed by half an inch. He’s had problems with glaucoma, surgery last November. He closed his eye and tried for the boop again. He got it! It’s sobering to realize how much vision he’s lost, but we did have a laugh. We are quite the pair. For a good few minutes last night, our bedroom sounded like “oof” “ow” “ouch” “aaagh” “dang” “crud” “ugh” “ow”! How romantic! ๐Ÿ˜„

We did get some kissy-face in, nice in a thunderstorm. But it’s tough to be all romantic with your partner when your neck is stiff and your hands lock up into mannequin hands.

This was strange, because it’s never been this bad before. I do have problems with my hands. They get stiff and sore, and I haven’t been bracing them. I also haven’t been resting them as much as I should, doing all this typing. I have been feeling the stiffness quite a lot lately. I guess last night, with the rain and thunderstorm starting at 3:00 in the afternoon, just when the kids get out from school, naturally, and raining off and on until after midnight had something to do with it.

Of course, my daughter did not wear her new rain jacket and came home drenched, but my son did wear his! Bravo!

Of course my husband was amused by my predicament, and I pretended to run my mannequin hands through his hair. There was no point in doing movie banter, he hasn’t seen any movies. I pretended to run my mannequin hands over his face, and they were fairly numb at this point, and he was laughing so hard I was afraid we’d wake the kids. Besides, my stomach was hurting.

So he went to sleep, and I stayed up listening to the storm for a while longer while trying to relax. I wanted to see if relaxation would help whatever was wrong with my neck. Finally, I decided sleep was a better choice, and bailed.

This morning finds my neck much more flexible with little pain, but you can feel a background warning. I will keep the Voltaren handy! And ensure I keep relaxed. Deep breaths. I should check the weather…

Have a fantastic day Zebra friends! ๐Ÿ˜˜

 

Goals

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I had lofty intentions for this blog, but it seems to have devolved lately into a daily diary of my exploits. I could have said pain – but that’s just melodramatic. ๐Ÿ˜„ it’s kind of true, though. ย I really do document my day to day pain at this point. I am in Survival mode, essentially.

…I started writing several hours ago. I’ve been distracted, had a nap, fielded a call from my daughter’s art teacher, (she suffers from anxiety, and has had spotty attendance this past month. He was concerned, understands, thinks she’s awesome. She endeavoured to turn in an assignment today, even though she was struggling).

As I was saying, I feel like I’m still in survival mode. I’ve had to shed most of my activities not actively related to living. This morning I felt as if I had taken a step out of the ooze. It’s great when I can add things back, like playing with makeup. Geez. Putting on makeup is something most people take for granted. For me, playing can take two or three hours for a simple face. A face most people would put on for date night. It takes me so long because I rest between steps, lie down, have to stretch.

I had to tell my mom I needed some space for a bit. I feel so responsible to her, but if I don’t get to her for a bit (Dad too, of course) I feel guilty, but I need to strip my life for a bit again. Just the basics. Making sure I get enough sleep, eating properly, taking my medicine and vitamins, bathing – which can be tough. I need to be for my family right now.

It looks like my husband needs to go for more consultation on his eye. He went to the doctor on Saturday, and the pressure was up in his left eye. The doctor wants him to see another specialist. Soon. I’m concerned. He was prescribed more drops, fully researched, for the one eye. Within two days his eye was red and angry again.

It’s kind of stressful over here. I suppose I shouldn’t be surprised if I am feeling exhausted and out of sorts. I’m trying to be responsive to and supportive of my friends, but it’s rather like I’m a flailing drunk trying to make sense of it all. My head pain has increased again, which isn’t too surprising, since I haven’t been looking after myself.

Going forward, I pledge to be gentler to myself. I will practice good self-care and remember I cannot be my best self if I am out of sorts.

My family needs me.

Besides, what ever turns out the way we expect it to, anyway?

Thanks for being here, Zebra friends! ๐Ÿ˜˜

Friday Morning

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I did manage to get a Beauty blog post up for today. I’m pretty pleased with myself. I took the photos when I had a pain respite one day ( I’m having trouble remembering what day it is) and wrote the copy slowly yesterday morning. I slept from 2:00 PM until 9:00, took my medication, looked at my email and futzed around until 11:00 PM. ย Then slept until 6:00 this morning.

This morning so far isn’t too bad. My neck and jaw is pretty sore. The back of my head hurts, and I have a headache starting to wrap around my head. I’m so nauseated and dizzy, too. I have wicked bedspins, it’s like being in a standing MRI, or when I had that barium swallow. Instead of just spinning flat, I actually feel like I spin top ways, then sideways. It’s awful. Better lying down, best on my side. I’m probably sleeping so much just to be away from it.

Things are definitely worse when I sit or stand, and get progressively worse the longer I am upright.ย 

I do feel much better, though. We are keeping an eye on things, and I am not having as much head pain as I was having. My memory and vision are both not really good either, just a bit hazy, but not alarming. That kind of just woke up feeling.

We’re pretty sure I’m not going to die from this, so we will evaluate on Sunday whether we go to the Emergency Room for evaluation. If I keep improving, then we will just try to be low-key and calm for a few weeks. Otherwise we go.

I took some daytime cold medicine this morning, so maybe this is what’s helping.

I have had so much good support through this. When my brain returns, I will thank you properly and link a great article.

Also, two Facebook friends have admitted to reading my adventures. That matters so much to me, you don’t even know. Sometimes I feel I’m passing through this life unnoticed.

Am I having a mid-life crisis on top of everything? ๐Ÿ˜

I’ve found, as an adult, maybe I haven’t been so great at choosing friends. The ones I’ve clung to have kicked me, and the ones I’ve dismissed have shown themselves to be the gems. I’m probably not in a good space and haven’t been for a long time. I don’t think it’s something I can fix at the moment. It’s just a musing.

I need to remember I’m in survival mode at the moment and act accordingly.

I have to put things in perspective. Be selfish. Be okay with being selfish. That may be the toughest part.

I was thinking about it. So what if people think I’m an asshole? For the first time in a long time, I like me. I don’t have the time and energy to explain myself to people who don’t understand or listen anyway. I’ve been exhausting myself trying to be wonderful to people who don’t appreciate it anyway. I’m tired. I’m tired of being nice. I’m tired of sending out care packages and getting a half-hearted ‘thanks’. I’m not a grandmother!

Anyway… rant over. I share a birthday with Dennis Miller. It comes naturally. ๐Ÿ˜‚

OK, ย Zebra peeps! I’m going to lie really still, because I just moved my neck and it hurts a lot now. Have a great day!