Mid Break Update

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I am really feeling better. I have taken a giant step back, I feel. I am streamlining my life.

I have divested myself of my Beauty blog. That was difficult. I’m disappointed. I enoyed that so much. I don’t know that it was hugely popular, but I enjoyed it. The commitment was too much, however. I will still continue to play with makeup. It is excellent therapy. It keeps my hands nimble, keeps me moving and motivated. I have a reason to sit up straight for a while, although I can lie down and apply makeup!

I’v pared down my Facebook friends list. I was originally going to delete everyone, and keep my account only as an identifier to log on to websites, but as I was deleting people, there were some who… well, I just couldn’t get rid of right away. I thought I would do two phases. Then, I decided to live with the smaller list for a few days. I like it. So far, it might be the level of socializing I need. Unfortunately, in my haste, I know I let some people go, people I probably shouldn’t have. I can’t remember everyone, though. I do hope they will be back.

After the US election last year, I added tons of friends, thinking there would be opportunities to make some great friendships. I did make some friends. But I overestimated my ability to actively participate in friendship. It’s also interesting to see who had left long ago. ย But I think this was a mistake, overall. As social and gung-ho as I sometimes feel, I sometimes don’t take the time to guard my emotions or protect myself from potential toxic friendships. I need to be more vigilant.

I feel like I have been doing a lot of things in the wrong way lately. Perhaps pushing things too hard when I should be letting go. I’ve been complaining and feeling that I have no friends, but I do, and I have. I couldn’t see them for the riff-raff. It’s embarrassing to admit, but I would be disingenuous if I didn’t. I think, however, those who have been in acute pain for any length of time will understand, at least, how I may have been feeling.

I’m feeling far more zen. Focusing on myself. My family. Becoming well within myself. Banishing negativity. It is hard, because my body is going through hell, but I know it’s for the best.

I’m decorating my space with pretty things. I’m organizing everything I can get my hands on. ย It’s one of my favourite things.

The muscles in my back have been killing me, partly from getting rid of stress, partly from overdoing it. My head still hurts. I have almost constant migraines and facial pain, but I try to not think about it. Keeping up with the medications help.

Another issue is that I am bad at taking my medication. I am now committed to taking my full dose at proper times, and it’s helping a lot. I know I am being stupid about this, but I lost a bunch of friends on a message board when someone decided I was a drug addict for taking my medication (it was the wrong type at the time, not a good fit, I was going through a nightmare on this stuff, so I really wasn’t great at defending myself) and it’s affected me. I am working on this.

My kids are really struggling. I am trying to be more present for them. My son does not, in fact, have Autism, but a series of learning disabilities. My daughter, does have Autism. Both have anxiety disorders. Brilliant kids, struggle to leave the house.

Be well, see you on the first!

โค

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

Progress!

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Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! ๐Ÿ˜˜

Wonderful Things

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My family has been treating me so wonderfully the past couple of weeks. Let’s enumerate the wonderful things they’ve done for me:

My husband:

  • Has gone to the post office to retrieve numerous packages for me
  • Has found the money to allow me to shop my brains out, since it’s just about the only thing I have time and patience for. Plus Zebra outfits!
  • He brought home French Fries for me even though they were out of his way and it was late at night and he was tired
  • He got out of the warm shower to grab me a barf bucket
  • He watched an episode of South Park just because I asked
  • He has run so many errands for me, I can’t even count them!

 

My Daughter, 15

  • She has been filling my water bottles regularly
  • Listening to my exciting stories even when she’s bored
  • Checking up on me to make sure I have everything
  • Bringing me breakfast during the week

 

My Son, 13 in 6 days!

  • He has been keeping my water bottles full
  • He has been spending time with me, like the two hours last night where he snuggled and watched TV and chatted
  • Remembering not to hug me without asking, because I’m so sore
  • Bringing my coffee in the morning on weekends

 

My family has been awesome. Except for:

 

Husband:

  • Forgetting about me in the bathtub and nobody hearing me yelling about getting the shower head down, so I had to wash my hair under the tap. It was a bit uncomfortable, but not the end of the world. I did have fun teasing him about it, though! ๐Ÿ˜„

I prefer to get help in and out of the tub as I’ve been so shaky lately. ย I don’t need that much assistance, just someone to ‘catch’ me, really, if I start to go over. Or call 9-1-1 if I pass out. I’m still so weak from whatever is going on with me.

I hope you enjoyed my glimpse into my family. Are you interested in my Sephora Haul? I can either show a photo here, or link my Beauty Blog post. Let me know.

 

Stay healthy Zebras! ๐Ÿ˜˜

 

 

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˜˜

 

Family Time

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Yesterday was Mother’s day, and I woke up to my alarm going off at 9:00. I usually sleep until 10 on Sundays, but have been enjoying getting up slightly earlier lately. Plus, my makeup look didn’t work out on Saturday, I wanted to try to squeeze in two looks as well.

I texted the kids, and was greeted with my usual Sunday fare of chocolate chip pancakes and coffee. My son carried those, and my daughter held a huge bag from Pandora! First to come from the bag was a gorgeous fuschia matte lipstick from Urban Decay called Menace that my son picked out. Apparently, he sat in the store with my photo and the lipstick samples and tried to match them. He will be 13 next month. He’s quite diligent. He was deciding among Menace, Alpha and EZ. He told me, even though I’m an Alpha, the colour wasn’t quite right. And he doesn’t think I’m EZ. Menace didn’t fit, but the colour is gorgeous!

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The cigarette holder in the middle is actually the Finger Brush.ย 

My daughter, 15, gave me a lovely glass box engraved with ‘Always my Mother, forever my friend’. So sweet. My husband gave me a bangle from Pandora, and of course we have the Finger Brush from Saturday. It’s called a finger brush because it’s supposed to mimic the action of your finger, in brush form.

Yesterday worked out well. I pottered and put on makeup, ND had very little pain and pressure. I was able to do two looks, no problem. Well, small problem. I was so tired by the end. I had to fight through.

Today I was battered, but I’ve managed. I played makeup today, I worked on an 80s look today that was fun. I was so tired and sore by the end. I needed a bath, too. I was going to bail, but I snuck up on myself. I almost dozed off inthe tub. ย I was washing fast, before I fell asleep.

I’m fighting now to stay awake. I might get an hour before dinner. My back is killing me. ย Gonna do it!

Hope your Mother’s day was great, Zebras! ๐Ÿ˜˜

 

Mellow Afternoon

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I just skimmed my post from the middle of the night last night. Wow, my spell predictor is aggressive! I usually fight with it, but I was so tired last night. Husband was snoring, and the kids were wandering around. I didn’t feel right sleeping. I was also in pain. I did drop off, finally. Husband has meetings all day, so he’s busy. Fortunately, boy’s therapy was cancelled today. He usually only snores like that when he’s congested or exhausted.

He went to his usual grocery run this morning and bought me a plush blanket to wrap around my wedge behind me. I can snuggle into it. It’s gorgeous! It makes me feel cared for.

You know, I read these articles that go viral about girls feeling sad, and their boyfriends buy them three things from Sephora. I devised a spreadsheet to track my purchases, as my memory is bad. We know what brain fog does! I spent, with permission and encouragement! over $1500 in treats of mostly makeup last month because my husband felt I was feeling low. Which isn’t to show off, there were some major limited edition drops last month that needed to be acted on immediately or not at all. This didn’t cause us financial hardship, I’m trying to say this without sounding like an asshole. It’s not, though, like we had to go without food.

But that’s only a very tiny thing compared to managing my pills, and being at every doctor appointment, treatment, surgery, dentist appointment, rearranging his work schedule so he can. When he is home, he runs upstairs at every buzz so he can get something I need or pick up something I dropped, or bring me food, or rub my back. He makes my phone calls, our kids’ phone calls, he takes them to the doctor, too. He’s been doing this for at least fifteen years. Although, I used to be able to attend some doctor appointments on my own, so eight years.

When he’s not at home, he’s in touch by text or phone, checking up or checking in. Working hard and excelling in his career. Never taking an actual holiday, in fact violating HR policy by taking days piecemeal. But when forced to take days off is bored.

He crawls into bed exhausted every night from cooking our meals, quelling our anxieties, and making us laugh through it all. When we try to credit and thank him, he dismisses us, saying he doesn’t do anything the average Mom doesn’t do.

I’m a pretty lucky person. I wish I could properly thank him. Yes, I say thank you all the time! He waves me off. I love him more than anything. It’s the best thing I can do ๐Ÿ˜!

Have a wonderful day, Zebra friends! ๐Ÿ˜˜