Sucks to be Me

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Actually, I’m not a loser, but my body sure is.

My head and neck pain is back with a vengeance. The Botox injections I had for my migraines and body pain definitely did alleviate some of the pain I was feeling. My shots are now three weeks past due. I have not heard from the pain clinic, but my husband is in regular contact.

In addition, my back is spasming like it’s made for it. Topping things off, I’m having menstrual-type cramps like you wouldn’t believe. I’m essentially curled up in a ball most of the day.

Just like the week before my shots, I’m exhausted and sleep a lot. It’s quite defeating. I keep reminding myself the neurologist appointment is on October 2. Just over two weeks away. At least I will have a plan. I hope.

I’ve had to put my Beauty Blog on hiatus until October 5th.  It was such a tough decision to make, but I can’t provide quality at this time. I attempt to apply a face of cosmetics and I’m exhausted part way through. Ten minutes in. Add the photography, and content. I’m so exhausted. I’m so disappointed, as I really love that blog. I’m looking forward to my energy coming back.

My kids are struggling as well. I have another blog, because I have so much information for living with people with autism. Some anecdotes, some strategies, and some catastrophic challenges. Unfortunately, it’s been too much to get that started.

My daughter has either had the flu since the beginning of school, caught the flu twice, or is suffering anxiety. There has been a nasty flu going around, and I was at the ER, a great place for germs. My son has been refusing to attend classes, and been spending time in the office.

My husband, Angel that he is, has been holding everything together. He fell asleep last night with his tablet on his lap and dental floss in his mouth. Poor guy. He tries to stay up and entertain me, but 10:00 hit him hard. I managed to slip the floss out of his mouth and put his tablet away without waking him.

I’ve been sleeping most afternoons from 1 to 6 or 7 and then am up with my husband until midnight. He usually sleeps earlier. I wake up at 6 during the week and later on weekends. I’m sleeping a lot. It may be to escape the pain. I’m focusing on being right on time with my medication so I don’t have the pain build up. It really helps.

I’ve also been nesting. Any energy I have goes into organizing or reorganizing drawers in my bedroom, which is my comfortable space. I’ve bought dimmer light switches, mood lighting, decorative boxes to contain some of the clutter, a fuzzy zebra blanket, some cute file folders, and cute pencil boxes. I’m getting organized with style! Everything is within arms reach. I feel so cozy.

Even though my body is being a real jerk right now, life isn’t so bad. I’m quite happy and content, I just wish I had more energy to enjoy things more.

Hope you’re having a good day!

💜

Standing Ovation

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I am an advice column junkie. I just adore them. Maybe I like to know there are people who have more problems than I do. Or that maybe having friends isn’t all it’s cracked up to be, anyway. Whenever I had friends, they all had crazy rules that they never told me about. I had to guess. Then people would get angry when I didn’t ‘know’. Like this one friend who was really sensitive about talking about her family. My dad had a mild stroke a few years ago, and, coincidentally, hers had one a day later. She didn’t ask about my dad, so I took this as a signal she didn’t want to discuss it. Well, you guessed it. She flew into a rage a few weeks later about how I never ask about her family. Well, she never asks about mine, either, I thought we were setting a tone? Ugh.

Then, of course, having to be informed two childhood friends aren’t speaking to me. It occurred to me the other day: Are there more? 🤣 how do you decide to no longer speak to a person you never interact with. Boggles me. I really want an explanation of the evolution of this. Because it’s so…

Anyway, reading Dear Prudence, which I pay for the Plus membership at Slate, because I love it. I saw this article and I had to share.

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And you can also see I’ve been shopping for slipper socks, they are inexplicably called reading socks now. If you are in Canada, indigo has some for $5. Last year’s sherpas! Fuzzy! We are also supposed to trade in our 2014 minivan. Wtf ? Our prior car was an 88 Caprice Classic. This trade in every 3 year garbage? No way. Plus, hubby is 6’5″ when he gets comfy, he stays put. He also only drives it on weekends to Wal-Mart and the grocery store.

He’s snoring away with dental floss in his mouth! Aww!

Goodnight all! 💜

 

Muddling Through

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All in all, I’m not feeling too awful. I hadn’t had a great time sleeping, but once I’d figured out my feet haven’t been warm since… I can’t remember, it was time for some socks. I usually can’t sleep with socks on, but my feet liked this, and I slept like the proverbial log. I thought I should look online to see if I could find some slippers. Not an easy thing in August. I may stick with the socks with the trippy bottoms for now.

I was miserable last night. I had a couple of days where I had slept for 20 hours or so, and my meds were all screwed up. My knee kept popping out, my face and head hurt, my back hurt, I had cramps, I couldn’t remember anything, and I was lonely.  I was whining to my husband that I couldn’t get comfortable, and I was freezing. I wanted more pillows, and he got this happy look on his face. Apparently, he had purchased all these pillows and didn’t know what to do with them. So he immediately piled four pillows on me and produced three from under the bed. Such comfort!

My sheets are so gross and smelly. I’ve been so sick, husband hasn’t been able to get me out long enough to change them. This weekend. I am so excited! The kids’ bedding is changed every week, but I’m always asking him to leave it just one more week, we will be fine! Ugh.

I am so tired these days. The heat, the pain, not moving, the stress. It adds up. I’m usually better after my shots, but I haven’t heard from the clinic yet. I’m not eating as much, either. I get weighed on the weekend, usually, too.

Today it’s mostly my head, my back, and my pubic bone giving me trouble. My knees are acting up when I get up to use the washroom. I try to straighten them and they pop and crack, quite painfully, as you see the patella slide around, or it knocks sideways before sliding into place. God, it hurts.  I’m trying to rehydrate. Last night I had the worst case of dry mouth. It’s probably from all that time asleep. I should have taken in some water. Thunder storms and rain today. The big stick that pokes my wounds.

My boy is a grouchy today. His sister is being sweet to me. I was thinking just yesterday how I will missthem when school starts. Check that. Not the fighting. Sigh.

As long as my feet are warm, I’m sleepy. So it’s naptime. I’m nodding off.

John Sarno’s mind-body theory helped thousands with chronic pain | Toronto Star

John Sarno’s mind-body theory helped thousands with chronic pain | Toronto Star

August 11, 2017
1:19 PM

Clipped from : https://www.thestar.com/life/health_wellness/2017/07/16/john-sarnos-mind-body-theory-helped-thousands-with-chronic-pain.html

I’ve been meaning to share this for a while. I hadn’t heard of him, but it sounds like he probably did as much harm as good. Anyone familiar with his work? I can get behind variances in pain, but the entire cause being emotional? Uh, no.

Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.

 

Woke Up Like This

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This is me just after I woke up and took out my mouth guard and took off my CPAP machine and pulled off my sleep cap.  This is because my friends on Facebook were teasing me about looking pretty awesome even though it was hot and sticky and I felt awful. I thought this would be a good ‘Me at my worst’ photo.

There is actually a reason for my youthful facial appearance, and it has to do with EDS. Because of our faulty collagen, some of us do maintain quite a youthful appearance.  I’m not certain of the mechanics of it. But it’s a thing. Also, I’ve essentially been in a darkened room for 15 years, wear that damn sunscreen! And I look after my skin as a hobby.

There are some things I am not happy with, of course. I have a wattle under my chin. That may be from the 120 lb weight loss however. I’m exercising my face to try to lose that. I have a pronounced line around my neck that I dislike. My arms are a bit flabby, my boobs are really saggy, I would like a major reduction. My stomach is often bloated from gastroparesis, which I haven’t been officially diagnosed with, but I have. I would like my hair to stop thinning. And the really dry skin that cracks, if that would stop, that would be cool.

I acknowledge these things are nitpicky and minor, and I would only have necessary surgery to correct anything, such as breast reduction, as that may help my back pain or my constant rashes. If I need intestinal surgery, it likely won’t help my gastroparesis. I’m probably stuck with that.

 

We decided to buy my husband a Nintendo Switch for his birthday, only a month early so the kids could play this summer. It was supposed to be here Monday, but it showed on Friday instead. Everybody is rushing through their chores. 😂

 

I think I finally figured out what I was trying to say about jealousy so I can finally drop it. You can’t pick and choose what aspects of my life you want to be jealous of if you’re going to revile me. If you are going to call me a monster or a saint, it isn’t fair to analyze a microscopic part of my life. I’ve made mistakes, some big ones. But if you’re ignoring the big picture, you’re missing everything. And I think that’s what fascinates me about people. Why I dwell on things like this. It’s a puzzle to me.  Because I know if people took into account my whole life they would not be jealous.

(Jealous of ME? I’m nothing! This must be getting like bragging, but I’m sincerely not understanding, I’m so unimportant, I don’t know why anyone would bother, maybe they don’t, though and I have too much time on my hands. This is my conclusion. People often bring this up to me. 🤐)

 

Anyway. I’m spending my weekend relaxing. I have a birthday makeup thing to do for someone! I need to see my kids, my husband. Have a bath.

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😊

Enjoy!

If you want me to do makeup in your favorite colour, or your favorite style, let me know! I’d be happy to try! 😘