Rough Time

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We ended up, finally, with a couple of inches of snow this morning. My kids, or maybe one was my husband? Were kind enough to send me photos.

I’m in agony. I was whiny yesterday? Ha ha! I tried to stay moving so I wouldn’t stiffen up. Today, I am like Frankenstein’s monster. I have nearly no fine motor skills. I crash around like a huge boar.

Something strange happened this morning. I took my medicine, the marijuana oil, and a while later I felt better. I had been lying still, but I felt dramatically better, and just a bit loopy and nauseated. Did I accidentally take my medicine twice? I feel really good. Just sick. Oops! Then I was ill, which happens so often we keep kidney bowls nearby. I just coughed up some bile. I had to use the washroom. As soon as I went to stand- oh, yes! I had the correct dose. It is very strange for me to do things out of order. But if I had doubled my dose, I could not be in THAT much pain, I am fine. So I hobbled back into bed, and finished a couple of errands I needed to do.

On days that are not so intense, I can keep moving, even if I don’t walk around much. This means my back doesn’t hurt nearly as much. On days when the pain is head to toe, though, there is just no way to deal, except to get through it and recover and piece myself together on the other side.

I am so glad my family is understanding.

My lovely cousin was stuck in town at the airport this morning, when I was at the peak of my stoned-ness, (?) Or whatever was going on there: trying to relax and not cry. She messaged me, I know she could tell I wasn’t myself. I hope I didn’t scare her!

I’m sure it will alarm at least a couple of family members to see me. Over the last three years I’ve lost 120 lbs. Mostly due to gastroparesis, but I know this will be universally ‘positive’ however losing as much as 40 lbs in 3 weeks due to vomiting is not the right way. My body just rejected food. It was horrid. I’m straightening my lovely curly hair because I lie down so much the curls just get crushed and become difficult to manage. That wheelchair we will be investing in. I’m falling so often from my knees giving out, and don’t forget that damn exhaustion!

Ah, well.  Speaking of exhaustion, I am going to have a nap, as I haven’t been sleeping well. I just got a new onesie from Torrid, it has Hello Kitty on it! Just some sleep and when the weather breaks, I need to wrap some gifts. I do this every year. I shop, forget what I buy, my husband hides everything, and when it’s wrapping time, there is a mountain of things!  Ah, its usually small stuff. My daughter’s usually a good helper.

Okay! Gotta nap this out! My lower back, oh wow! Can they do transplants yet?

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! 😁

Remember Me?

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Hey everyone! I’ve spent the last two weeks freaking out over this past weekend’s beauty convention! It went over very well, and I’m hoping to soon have a cross-post up between my two blogs about my experience.

I was very nervous about this weekend because I purchased the tickets for me and three friends in March when I felt fairly well. With the head and neck pain I’ve been having, I wasn’t certain I could endure the entire weekend.

Add to this, I had my BOTOX injections and broke a crown on my tooth and had to have dental work done. Ugh.

Oh, I missed this story, so on the day of my BOTOX injections, there is a volunteer in who isn’t the usual. She comes in the lobby and calls for Diana. I ignore her, that not being my name. She then calls Diana with my last name. I figure it out. I stagger over, followed by my husband. I apologize for not answering to the wrong name before, being the Canadian that I am, and educate her on the correct pronunciation of my name. DAH-nuh to rhyme with banana. She gets all put out. She goes to the file and starts whining “Well, it’s just that we have four names here for you!” My husband goes over and asks what they are. She’s referring to my first, middle, maiden, and last. The only one I don’t use is my middle. And there’s a short form of my first name I use. So she lightens up a bit.  Then she comes back and want to know if she needs to fill all the serum, if we use all six vials. I told her yes. As we’ve been doing this for three years now? Maybe two and a half. She then says, I don’t know, it’s kind of a lot… And then looks to my husband for validation. 😠 She comes back after with another administrator, and thusly begins calling me Dayna for a good five minutes. I won’t even mention her mocking my husband when he went to get me up when he thought the doctor was ready for me but he wasn’t. I will send a note, though, to patient relations. Yikes!

Back to the convention, so after my BOTOX, I had my tooth fixed, went home, rested up and was really anxiety and pain ridden, and I couldn’t figure out why. I was angsty and stressed and such a mess. But then, as soon as the event was over, as my friend got in her car and drove away….

My throat began to hurt….my tongue began to swell…my lymph nodes are swollen and sore. I couldn’t sleep my tongue hurt so much last night. I’m glad it waited, that was kind. I do need to have my husband book off work to take me to the doctor. I can’t go alone. I get really upset and stressed when I’m sick. Sometimes even before I know I’m sick. It started in my 30s. It’s almost as if I am afraid to be vulnerable. I remember one day being so ill I could hardly walk I had such a cold, but I had decided I had missed four days of work and that was it, I was going in. It didn’t matter it was 8:30 at night, I was needed! My husband talked some sense into me, but I get so irrational.

A couple of conclusions: last time I went out socially was last August. This isn’t acceptable. I need to get out more, as does our daughter, so we do not have this much anxiety.

The world certainly treats you differently when you are thin..ner. I’m not quite thin, but I’m thinner. I’m about 60 less than last year? Wow. Last year someone asked if I was my friends’ mother. That’s the one who spoke to me. This year? Compliments and chats and nobody speaking to my carer (pusher? 😁) first…well, mostly…. but that’s a story for later!

There were actually moments when I didn’t notice my pain. I feel miles better today, spiritually, anyway. My mouth hurts. I’m thinking strep. All that turning of my neck may have worked out some kinks. Now, I’m far from sprinting a race. Much of this is because of a good medication balance. I did have two pretty scary incidents where my knees just buckled under me. My friend who is a nurse thought that was pretty cool, I think, except one was on stairs. It’s that with no meniscus, it feels like one bone goes one way and the other, well… I also had my fingers go out yuck. But in the grand scheme, I will take it.

I will try to get that post about my experience together, and I will let you know!

😘

Irreplaceable Me

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How many days has it been? A million? Ugh.

I’m so bored. All I can do is sleep and sometimes take medicine. I’m way off my routine, I’m not sure what I’ve taken on time this week. Actually,  I’ve mostly missed my 3:00 pills and my mmj. That should be it. My 6:00 a couple of times. But my husband has been getting home earlier and checks now.

I’m seeing the doctor tomorrow! Husband and I are making our list tonight of what we have been seeing. I’m not going to let him bully me into hoping things will get better. This has been consistent pain now for months. I don’t know that I necessarily need more pain medication, but I likely need more investigation into what is going on. This ‘it’s just eds/endo/fibro’ stuff isn’t going to work anymore. When I’m losing use of my hands, when I can’t eat for several days (usually when I have the flu I can take something in without the digestive problems I’ve had. I woke up this morning to find myself on the toilet, so, yeah, ew.).  I want to get this neck thing straightened out -literally! My knees, these damn headaches, the list goes on.

The positive side of things is that I’m reminded how valuable I am to my family. My son turns 13 on Sunday, and my husband has been admirably juggling everything, however the gifts had not been bought. That’s usually my domain. When I have a flare-up, I can still often get things done. When I’m completely out of commission and can do nothing but sleep? Then we have a problem. Then we start to see how not having Mommy around affects us.

I woke up yesterday evening around 7:00 to find my son hovering at the foot of my bed. He hasn’t been diagnosed, but he is definitely on the autism spectrum, and he was doing a little dance of impatience with hand flapping as he waited for me to wake up. As soon as I opened my eyes he dove into my bed and exclaimed he was waiting for me to wake up because he wanted a snuggle. He settled right in beside me, and we watched TV.  It was lovely.

It’s good to be needed.

These are the sleep shorts I bought at Old Navy. I bought 2 pair 20170606_201735of shorts, I think I have 3 complete pajama sets, as they have camisole to go with them, a romper, a strappy top, and a pair of socks all with the zebra pattern on them.  I will take a photo one day when I’m wearing them, once they are all washed up! It’s nice to buy from the regular size part of the store. There are so many choices!  I’m almost redoing my wardrobe. I have so many clothes to get rid of. I don’t ever want to get big again. But we can’t always control that stuff, can we? My biggest things are not eating when I’d rather be sleeping, because sometimes I just eat to keep myself awake, and keeping an eye on my sugar intake. When I eat too much sugar, my weight skyrockets. When I stop, my weight drops at 2 lbs per week. Magic.

OK.  I’m tuckered out. I have lots to do for tomorrow.

Have a beautiful day, Zebra friends! 😘

…as a Kite! 😄

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The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘

Just Keep Swimming

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I’ve spent the last five days or so sleeping for at least half the day, and I’m still exhausted. I just don’t have the strength nor energy to do many of the things I want to do. I really have to think about what I want to accomplish and where I can spend my energy. If a conversation runs over, so long bath! My daughter had a panic attack this morning and I am pretty much done for.

My husband has this idea in his head that I’m bored. Nothing could be further from the truth! I have lists of things I want to do! I have makeup looks I want to do, books unread and stacked, waiting, crochet projects, movies to be watched, blog posts to write, friends to chat with! As it is, I am busy from morning until night when I have the energy. I can’t seem to convince him, and it makes me so sad.

My neck is so bothersome I just can’t take it. I move wrong and I have intense pain. I don’t know what to do about it. I’m waiting for my doctor appointment in six weeks. Hell, I have pain when I don’t move. I’ve considered going to the hospital, but really, what can they do? My abdomen is also giving me incredible pain. I’ve run out of the higher THC mmj my doc prescribed. I only vaped extra once, so that doesn’t work. I ordered yesterday, so yay.

Good news, I broke 200 lbs! I’m 198 now. I don’t really know how to stop this. I guess I will stop when I’m there? I’m eating what I can, not trying so hard.

Going to try a nap for a couple hours, then try and put a face together, because it’s fun! 😀

Hope you’re having a good day, Zebras!

Space Toilets

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I was reminded of a story about my son, who is almost 13. He has Aspergers, and suffers from anxiety. He had heard about debris being let go from planes and it landing on people and animals, sometimes hurting or killing them. We talked about this, and he understood the waste from planes rarely hits anyone in Canada, because of our sparse population, and even though he knew it was wrong, his brain had made it so he was afraid toilets would fall from the sky. He laughed with us at the ridiculousness of this, but was still afraid to go outside for a week. Isn’t it funny how our brain works sometimes? I miss this kid.

I made sure I took my full complement of meds today, with vaping, and I had so much pain, still. I even took my breakthrough meds, and nothing. I got a lot of odds and ends done this morning, and this afternoon, I played with makeup. I tried a new palette and took some photos. It was fine, but you could see the pain in my face. I had fun, though.

I spent some time photographing my collections. That was distracting. My sleep specialist doctor called. She wanted to rebook my appointment. This is the doctor that monitors my CPAP machine. I was supposed to see her today, but couldn’t get there on my own. So we rebooted for the 6th of March. The office calls back 5 hours later to book an appointment with my husband for the results of his sleep study. I then introduce myself and we find a day we can do the appointments back to back, and settle for March 13. My husband is quite slim, but snores, and occasionally stops breathing while he sleeps. It’s like he holds his breath. Not a fan. I was supposed to let the doctor know every time I gained or lost 20 lbs. Oopsie. I have about 80 missing. I suspect another test in my future.

Another first last night. I was shopping on Sephora, and bought a gorgeous lip gloss, I requested notification of restock on two other colours. Those colours came into stock around 11:30 and I remember looking at the email… but I guess I must have purchased them, because they are on their way! 😃

It’s been rough trying to communicate lately, I’ve been just falling down exhausted. I’m just floored by the number of people who have no issue with mocking what I’m saying or how I’ve said something. I’m not always the most elegant speaker, but goddamnit, I am so anxious about it, why do I get kicked when I finally try?

I was once a part of this group, it was a very important group to me. It was online. I had tons of friends, I had thought. I was trying to explain about my pain and what it was like to be on those horrible oxycodone pills, that you had to take every four hours, but would wear out at hour three, so you were in screaming pain for an hour. I had mentioned my prescription kept increasing, and some ‘person’ decided I was a drug addicted drug abuser who was abusing my children. Went off the rails, I was not well enough nor grounded enough to defend myself, and poof. Life gone. No more friendships. I was compared to Rush Limbaugh. For the record, I absolutely took my medication as prescribed. I am notorious for under-medicating, actually, which is terrible. I should be absolutely consistent and on time, but it’s hard to remember, or I will do it in a minute!

I don’t know why I’m so introspective today. Maybe I’m just tired. I know I’ve been struck by the amount of ableist initiatives our government is putting forth, and I’m almost in the mood to start making a stink about one or two.

Almost.

Maybe it’s been one too many times of explaining why I am this way, or why I can’t… or why I can’t do something. I feel a lot of loss lately.

I’m going to troll around and do some reading, edit some of my photos.

Stay warm, my zebra friends! 😘