Netflix and Nausea

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My Zebra Strong tee arrived! Booster.com helps charities with fundraising, so they are a cool place to check out.

The past couple of days have been interesting. Yesterday morning I accomplished quite a bit. I cleaned a bit of my bed area and my outstanding computer files. I’m transitioning from a Yahoo address to a gmail, so I did some of that.

I napped all afternoon.

I’ve been watching a lot of Netflix. Mostly Documentaries, interspersed with Embarrassing Bodies, which mostly involves sexually harassing the male doctor, but I’m alone in my room, he can’t hear. ☺

My head hurts. I couldn’t keep down breakfast. I’m almost used to this pain now.

My memory gets really lousy as the day goes on. It’s awful. I did go on a journal spending spree and got some nice ones!

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There are some dotted pens. They are cute! I bought a proper Address Book. I won’t have to fire up the computer every time I need an address! There were three plain journals, and two holographic/iridescent journals. I’m in love with holographic or iridescent products. ❤

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Pretty! And, of course, you can see the reflection of the ring light.

It’s been thunderstorms like crazy here! 😮

I’m incredibly bored, so I’ve made Amazon my bitch, and it’s giving my husband heart palpitations. I’m terrible, I can never do just one thing at a time. The tv is on, but I have to be futzing on my tablet or organizing a drawer or writing a list… I need to Zen more. I should slow it down.

Although I felt awful today, I’m feeling better than I was this morning. My back doesn’t hurt as much, my head is okay. I might try a quick look.

It’s amazing how your pain can change. I know I’m delicate today, though. My abdomen is threatening cramps if I’m not careful. Is that the Endometriosis acting up?

Today will be quiet, with some masking, skincare, Netflix, naps, photos, and maybe a makeup look if I can.

Moving slowly, though. No need to rush!

Hope you have a great weekend!

 

 

I’m Here… Sorry!

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It was pretty darn rude of me to just drop out of sight like that, but I’ve had a hell of a week.

My son has had phenomenal anxiety. He is enrolled in a day camp, and he can barely attend. He struggles so much. I had a long chat with his counsellor today, so I feel he is getting some good help. Being a teen is tough. I didn’t like it either.

EDIT: I spoke to his professional counsellor for therapy, not his camp counsellor, he actually did that himself.

We have permission for a wheelchair. A temporary one. My doctor is hoping we can still do something with my knees, and we hope I can walk part time.

My hands, wrists, and fingers have been awful. They hurt so much. I’m not sure what to do. Resting didn’t help. I keep being told to wait for the clinic but it could be 6 months away.

I want to sleep all the time. I’m so tired. I’m trying to be awake, but I start falling asleep like I am now.  So I have to go.

I’ll try again soon.  Taking vitamins.  Maybe it will pass.

😗

Sunshiny Day! 😄

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I have a feeling today is going to be interesting. I’ve noticed several people haven’t been posting, so I hope it means they are feeling better with the weather and are enjoying themselves. I know I have a way different experience in the summer months. My joints tend to be looser, making it harder to walk, but my pain tends to be less intense overall.

I was supposed to see my eye doctor today, but I’m in too much pain. I know I’m usually in less pain, but I saw my Cannabis doc this week, and well, actually I saw a different doctor, this being the third doctor, since my original doctor left the clinic at the end of last year. This new doctor actually gave me instruction, as opposed to the original doctor, who suggested I get all info from my friends. Since I had no friends that vaped, I was pretty much on my own. Of course he treated me like a drug seeker! This new doctor actually sat with me and suggested I break down my vaping times. Change is tough, though. My body is adjusting. I keep forgetting, so I get really sore.

My in-laws called and announced they were dropping over today. My husband won’t be home. My daughter and I aren’t sure where to hide. We are sure we’ll be embarrassing.

The good stuff:

  • I have clear skin, no acne today!
  • I bought these really cool stands from kikkerland, a phone stand and a tablet stand that hold my stuff perfectly. Now I always know where my phone is, and I can have my tablet on while I do other stuff. I will post photos, if interested. $15 and $20 USD.
  • I bought the Pat McGrath Lipstick collection launched this week. I’m lucky I can do this. 😊
  • My kids have been lazy as hell, but very loving lately. I have great kids.
  • I have some really great friends. They really understand me. That is a blessing.
  • I am slowly getting organized. It feels really good. I have to get my blog check-in in sync, but I will get better.

 

I may be hurting, but I’m feeling positive. There are many loose ends that need to be tidied. I need to find out what is happening with my doctor, the EDS clinic, etc. I need to follow up on the neurologist to find out what’s happening with this head pain. But I’m doing well otherwise. There’s lots of napping going on.

😊

Summertime and the pain is …

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My symptoms tend to alleviate somewhat in the summer. It doesn’t mean I’m cured by any means, but I find my knees don’t ache as much, nor do they pop and crack as much. My muscle aches aren’t as intense. My elbows don’t feel as brittle, my hands ache, but they don’t hurt as badly as they do in December.  My neck has been quite a bit better, with my head pain bein not as intense, although that could be the Botox injections.

I heard from the EDS clinic after we followed up. They are waiting for info from my doctor, which they requested May 9. He swears they didn’t receive it. Waiting time for the clinic is 6 months. They have wasted 2 months for me. I am so angry. My husband is handling this because I don’t think I can be nice about it.

My cannabis doctors office called to reschedule my appointment on Friday from this Thursday to tomorrow. I was upset, and I let it show in my voice, it was trembling. I said I was upset and my husband would have to call back because he has to bring me and he has to take time off work. Well, this person got all snippy with me! She exhaled sharply and told me he couldn’t book appointments for me. I protested he’d been doing it for the three years we’ve been patients. She relented “Oh, yeah, I guess he is on your file” Fine. So husband calls, and the only appointment I can get before my expiry is the one offered, and it isn’t even with my regular doctor! Now, I do have some responsibility in this, as I had to cancel my appointment because I was ill. However, we book 3 weeks before my due date (June 29) because there’s a chance I could be ill. They could only offer me the 13th. I need to be renewed before Monday the 17th. They have rescheduled the last three appointments at the last-minute, and it is infuriating. I believe they have rescheduled many more. I have rescheduled two because of severe contagious illness. This, plus the location of the building means I can’t make it to the building unless I have a certain amount of stamina. The building is on one of the busiest corners in the city. (Yonge-eg for anyone who knows Toronto). So, either 1. my husband has to drop me off at the building where there isn’t parking and there are no seats in the lobby, so I have to be dropped off and have the stamina to make it up the stairs and to the office.  2. I go to parking with my husband and walk to parking with him. 3. We rent a wheelchair (or buy) and then the parking situation becomes more realistic. 4. We take a cab to the office building, which drops us off in front, however, we have a long wait to hail a cab, I have nowhere to sit (except the floor) and the walk to the taxi stand is just at the furthest limit of my walking ability. So we will take a cab and I will suck it up. I’m so brave! 😄

I guess I’m so sick of after all that time the first doctor spent treating me like a drug seeking video game player, now they’re upset that I’m actually disabled and need assistance because of it.

Even though the pain might be less, my joints are very wobbly.

I think it’s rainy this week, which is making my head sore, which is making me kind of grumpy. I should probably stay off social media. Find something else to do.

I’ve managed to do a bunch of organization this week. I feel so much better to have lots of things handy and knowing where things are. I’ve organized notes and snacks and email and…everything! I even made lists for everything I needed to speak to my husband about. We arranged for him to come to bed at 7 on Saturday night so we can hang out together. It was great! We got so much done, I don’t think we will need to do that much chatting again for a long time! Ha ha!

I’ve been going to nap for an hour and sleeping for four to six. I imagine my body is healing. I am enjoying it. I feel stronger and stronger.

Dang this headache.

I am a Staaaaaaar!

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I adore Bob’s Burgers.  So much that Archer is weird now.

I have been neglectful of my blogging responsibilities. I am sorry. I have been spending all weekend rearranging my living space with the assistance of my family. We are not quite done, because they move like turtles. Well, they did until we straightened some things out. I like to give orders 1 through 10 and have them completed. Now go away and leave me until I need you again or work on task X. We were working as I was giving an instruction and waiting for it. Ugh. No. We sorted through a ton of my makeup and skincare. I feel well organized, because if I can argue my way into a couple more steps, I will be quite independent.

I was going to do my blog about beauty today, but I decided to nap. I think it was a great idea, because I was out. From 3 until 6. But here I am at 1 am, exhausted and unable to sleep. I don’t understand. How does this keep happening? I try to stay up, I fall asleep out of exhaustion, just a bit, and I’m still awake! I see another sleep study in my future!

I finished my medicine from the infection I had on Saturday. I felt great! Unfortunately, my tongue is starting to tingle and swell and go numb again. My lips a bit, too. My husband is off tomorrow for his eye appointment.  I dont want him to drag me to the doctor. Besides. I don’t want to go. I’ve NEVER had anything weird like this before! I don’t want to be around any more sick people (acutely). (Contagious)

For those who spend much time in bed, how do you configure your kingdom? I wonder if some of my back pain is in my setup, and would love some ideas of what to change!

One of the things I was going to do was pick up a book instead of a tablet at this hour. I sensed my husband was semi awake. He is autistic, what they used to call Aspergers, though not formally diagnosed*. I asked if he had a book light. He asked if I was going to read. I replied exasperated “No, I’m going to perform a colonoscopy!” He shot back he’d get the better flashlight. Thing with him, though, and all autistic people are different, although some are similar, you don’t know if it was sleep mutter, deadpan humour, or strict logic.

*Our daughter was diagnosed in 7th or 8th grade and the staff all commented on how exactly alike they are. Eerily alike. They look alike, they think alike, yeah.

So that’s been what I’ve been up to. Someone else is walking around the house. Probably my daughter, the other Insomniac. She’s so tired during the day, too.  We should make a boys club and a girls club. The girls can sleep all day, the boys can bring us food when they have time, and they can go to work during the day and sleep at night. Our daughter and I will stay up and watch Netflix. 😂. Our son has daycamp. We should cross paths morning and evening. Oh, goodness, can you imagine? Shift Workers do it, and it must be great for those who are dedicated or wired that way. I’m not really sleeping at all, just four to five hours altogether. It’s not helping me fight whatever body is fighting. I spend hours just lying here resting. I used to be a 9 hour a night person. My whole life.

I hope you have a great sleep!

PS   Sorry I sound kind of grouchy. 🤐 I dont want to be around me either! 😄

 

Friday!

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Why do I still get excited for Fridays? I haven’t been able to work in nearly fifteen years. You would think maybe my family hangs around more, but they really don’t. I bet it’s the chicken fajitas we have on Friday night and the snuggling and animated shows on Sunday night. The Simpsons and Bob’s Burgers! Oh! Chocolate chip pancakes on Sunday morning! Mmmmm.

My head is hurting less and less. I’m learning to live with this burden. I’ll have to name it. As long as I ensure I lay on my side every hour or so, for at least a half hour, don’t put too much pressure on my neck in general, so no actually holding my head up if I don’t need to, propping up with pillows is preferred. My memory is lousy. I can barely follow conversations, and television plots are very complicated to me. I was trying to find something at an online shop yesterday, and I could not find it. I looked this morning, right there, plain as day. I’m really overdoing things as I’m pretty bored. I don’t want to interact with people because it’s confusing, and I end up getting frustrated. I only want my nuclear family, they understand sort of.

It’s rather like being drunk. You get worse as the day wears on, more tired, more disoriented, dizzier. Napping helps, but it doesn’t quite fix things. You need a full reset for that.

I’m still sort of in hideout mode. It’s most comfortable.  I wish I could read, though. My eyes are wonky and I’m not retaining info. Plus that tiredness thing. Reading would be awesome.

Half of me wants to play with makeup, the other wants to nap all day…

Sigh.

What kind of life is this? I feel like once I get well, THEN my life can begin. But no, this is all there is. I’m sure there is meaning somewhere.

 

Have a lovely day, my Zebras! 😘

It’s May!

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My search for a Maypole .gif rewarded me with this. It amuses me, so I’ll keep it!

I’m still feeling weak today. I’m not nearly as nauseated, so I’m kind of eating non-stop. I only had 589 kcals yesterday, so this should even things out. I know I’m trying to keep myself from falling asleep. I’m annoyed because I took yesterday and lay around. I want to play today. But my body is saying no. My back hurts, my neck is just intensely painful, and my abdomen, Oooh, it’s awful. I’m tired of this. I’m tired of whining and complaining.

I would like someone to come and sit with me for a while. Someone I don’t need to talk with. I used to watch garbage TV with my sister, but she’s living in Beijing. I miss her.

I should probably give up and have that nap. It’s not going to happen today. Not now, anyway. I think I need breakthrough meds. Texted the husband to ask if we should follow up with the pain doctor.

Some things I want to say, have to wait a bit until I feel less like I’ve been hit by a steamroller.

Have a good afternoon zebra pals! 😘