Lies I’ve Been Told…

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“Looks aren’t that important in life, it’s what’s inside a person that matters.” …

“I am your friend,”…

“That looks great on you!” …

“You’ll regret it!” …

“I’ll never tell anyone, I swear!” …

“You can count on me!”…

“This medication is non-addictive.”…

“I would never lie to you,”…

“I love you!” countless…

“If you lose weight you’ll feel better!” x infinity…

“Your doctor will call you back in three days…”.

“Your doctor will call you on Tuesday.”.

(Sigh)

Now, to be fair, it seems the clinic is moving floors. It essentially broke down earlier this year (at last check, admittedly a bit ago, only complaint with my doctor who ran clinic is about paperwork. Will keep you posted. Must have hubby do checking am too weak),  and it seems to have merged with another pain management service. My new doctor, who was only in this clinic once a week anyway, has not been in, due to the chaos. I have confirmed the scan is on my file. Now, I don’t even know if the doctor to administer the blood patch is still on staff. I caught a quick article up online for only a couple of hours that stated there are no doctors in my home city to treat chiari if it turns out to be. I will burn that bridge when I get to it, but I am pretty miserable here. I essentially lie in the dark most of the time. The straighter my neck the better. My vision is very bad. My tablet is turned way down, as is the tv. Very dark. I can’t stand noise. So it’s not always watchable or useable in the tablets case. Last week was great- I could sit horizontally and play with makeup for a little bit! Have a rest. Organize some items I had tossed aside when feeling terribler. So much better than lying on my side in the dark. I have incredible trouble sleeping, so I stare into black space for hours. It can be awful. And the facial pain. Ay-yi. And the back pain so bad you almost faint, but you don’t.  Because you’re home alone. On really good days I get to sit up for a while before the pain starts, the nausea and dizzy take over. On really really good days you can turn on a lamp.

The EDS Clinic said I could be in to the pain clinic there by the end of June, so hope oozes from every pore! No, I am grateful as I’ve been inappropriately medicated for a long time. I would like to sleep, maybe? Once a week? My former pain doctor had been planning to change my plans for medication for a while, as he suspected I might be causing myself pain with what I am on. (Apparently it’s a thing) Plus it has been a year since I have had proper migraine shots, so dealing with intermittent migraines, too. Fun! 😄

Oh, and a lady from Chiari Canada has been so lovely and supportive in corresponding with me, even though she is so busy. I appreciate it so much.

My rugrats gave me their flu or cold or whatever… I am not amused. I shall take my whiny butt back under the blanket.

I shall let you know.

 

 

Spending time

My son is introducing me to his favourite YouTube videos, and this is golden. It amused me so much. The creator, or lead creator Zach King is magnificent. Look him up. The Jedi Kittens are so funny and very quick videos.

More soon.

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! 😄

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! 😘

 

Finding Joy

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My pain is feeling better. My breakthrough pain is subsiding. I feel it’s under control, but still a hair-trigger trap. I am taking my breakthrough meds. It sounds like a children’s book.  “She takes her breakthrough meds for her breakthrough pain, in her breakthrough house…😀”

My son came home from his school trip last night. He wouldn’t even speak to me. He wouldn’t come near me. He was exhausted.  He hadn’t slept the whole trip. This morning he revealed he had a panic attack on the bus coming home.  After 3 days of poor sleep it isn’t surprising. I hope they weren’t too cruel, however grade 7 boys… he won’t say.

wp-1488055003514.jpgI had a good chat with my sister. I love it when she’s able to chat. Shes teaching English in Beijing.  I was whining about my flare-up and she, in the spirit of those who are oh, so well-meaning but not helpful, suggested I try hot water, trying to be funny. She suggested I drink it until I was dead. It struck me so funny. She always cheers me up. She sent me the cutest video of her dancing with one of her students! It was the cutest!

 

Let me share other places I find joy!

Beauty and self-care:

Don’t automatically knock this. There is a lot to be said for putting some effort into your routine if you’re feeling up to it one day. I don’t necessarily mean every day, if it’s not your thing. But if you enjoy it, put on makeup,  pull your hair back if you can’t do both in one day. Take some photos. Remind yourself you can look average. Do a mask. If your products are too precious, see if you have the spoons one day to make it into a Sephora or another store for a makeover, or if a friend will come over and help. Guys, too, can benefit from a mask, brow trim, and foot mask.

Box subscriptions:

There is a cost associated with this, but if you can ask for one for a gift, you may be on to something. Things like Topbox in Canada can be had for $12 per month, so shop around for your favourite things and see if there is something you can take advantage of. 

There are more than just Beauty boxes out there. There is everything from beer to razor clubs to monthly menstrual clubs. My advice is to find a regional subscription box blogger and go from there. Two I like are @pinkaboutboxes on Instagram and @girlmeetsbox also on Instagram.

Product Review Clubs:

I am a member of Influenster.ca and Chickadviser.ca. They provide samples of products to be reviewed. Influenster is very hit and miss, Chickadviser.ca you can sign up for your products, although they sometimes send you things you don’t sign up for. It’s always stuff you use anyway, like shampoo, so its not like I have to go out and try to use a chainsaw! 😃 Product Review clubs only send out products a few times per year, so it’s not a large commitment. Influenster sometimes has you post to Instagram, it’s a little more involved, but lots of lead time.

Not only does this give you a bit of a hobby if you want one, but it gets stuff for free, too. A bit of digging can show the amazing plethora of items available. Many beauty products, but that isn’t all – Chickadviser.ca has plenty of calls for other items I’m not qualified for because of my eating plan. See what is available in your area.

Blogging:

By now you’ve figured out that I blog here. 😄  I also blog http://www.squidgesbeautyhaul.wordpress.com about my Beauty purchases and collections. Is there something you collect? Are obsessed with? Maybe you should blog about it.

Instagram

I’m also on Instagram @squidgeaboo with my Beauty collection . It’s fun. I do it from bed. I take pictures of my old stuff and my new acquisitions. What could you show off in photographs? Yes, a daily photo of your cat would be a hit. It’s the internet!

Guilty Pleasures

I will share this with you as long as you promise to stay friends with me. I will reveal my most disgusting guilty pleasure. Okay? Ready? I read Teen Mom gossip. I don’t watch the show, but I can’t not know what that Farrah Abraham gets up to! I’m so ashamed!

I suggest you develop some guilty pleasures of your own. I was going to check and see when the Real Housewives of Beverly Hills was on because Lisa Rinna is such a train wreck (I don’t know her Irl personality, but I hear it’s less bizarre) and they are starting a Toronto one, but I think it may be detrimental, all that yelling and backbiting. I’ll think on this one.

Good TV

Good positive uplifting TV shows

  • Who Line is it Anyway?zd2spvi4vbleo
  • Bob’s Burgers
  • Mrs. Browns Boys
  • The Simpsons
  • Friends reruns
  • Unbreakable Kimmy Schmidt
  • The IT Crowd
  • Last Week Tonight
  • Vicar of Dibley
  • Parks and Recreation

 

Internet Surfing:

When I find I am just in the mood to surf the Web and not really to interface, there are a couple of things I do.

  • Shop. That’s pretty self-explanatory.
  • Play on Kickstarter, this is new to me. I had not realized the fun one can have, and the creative items being made here. Do not miss this.
  • One of a Kind Craft Show: This is a quarterly show in Ontario, filled with artists. They have a website, I can peruse them for hours.
  • eBay poking around: I will often play on eBay for hours, looking for old toys I once had, evaluating some of my treasures, looking for weird stuff.
  • Cracked.com: goodness. If you go here, have someone check on you. You will get lost. Fascinating articles, one leads to another.

 

There are some of the ways I ensure I have joy in my life? What do you do to make sure there is joy in your life?

Stay joyful, my zebra friends! 😘

 

 

 

 

 

Botox for EDS Day Two

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So here we are on day two. I fell into a deep sleep last night and felt like I had just closed my eyes when my alarm went off!

My right lower quadrant abdomen is so sore today! My son came up to hug me and I flinched so hard! My neck is really sore as I relax the muscles that were so tensed up all week. My back is still achy and I am praying the Botox takes full force this time!

I remembered just as I was falling asleep last night to ask my husband to put my heavy arm brace on me as he was coming to bed from brushing his teeth. That’s how tired and pathetic I was! He did it for me, he’s amazing! I don’t remember the end of it. My thumb is still really sore today, as is my elbow. I have to keep11s7ke7jcnxchs bracing! I need to ask for a referral again. When I was first diagnosed,  I asked to see a hand specialist. They set it up, but she retired. Nothing else happened after that.

The day after Botox I am usually tired and sore. Nausea kicks in. I am ready for a nap. I don’t think it will interfere with my sleep. There’s plenty exhaustion to go around.

I’m going to nap, have some snacks, and watch the HBO special on Slenderman.

I decided to start a second blog called http://www.squidgesbeautyhaul.wordpress.com. I love makeup, it’s my hobby, so I though I could have some fun with this. I just wanted to test it out for a bit and see if I have enough spoons, first.  This blog will be my priority.

There was one funny thing from the hospital yesterday I forgot to share. Husband was helping me down the hall to the lounge where I could wait for him to get the car. I was a bit spacey and wobbly as the treatment was emotional and painful. We encountered two women, older than we are, using walkers. For some reason, they are circling each other as if in some elaborate dance. I try to pass one, the other cuts me off. I get by the next, her friend is right there. It did not seem to be coordinated, nor did these women seem to know each other, but it took my aching body nearly three minutes to get by them, because they seemed to be the only disabled people in the world! It was hilarious,  once I sat down. People really need to watch where they are, honestly. They seemed like bright women, just without a sense of what was going on around them.

Then I was watching for my husband out the window, I had turned around in my seat, and a woman stands in front of me and sticks her bum right in my face. I could have taken a bite had I a mind to do that sort of thing. 😂 Thank goodness for winter coats. I was so surprised! I really don’t get out much, do I? Just then my husband came around the corner with the car, so I could go. Escape!

I must be a terrible human being.

Happy happy safe at home!