You Can’t Tell Me What To Do!

giphy

I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…

 

After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.

Sick? Well, I Feel Sick.

giphy

I’m not certain if I’m actually ill or if my body just quit on me. Not that dramatically, of course. I am aware it could quit to a much greater degree.

I should probably stop here and warn you this might get a bit weird and rambly, as I have spent the past couple of days on nighttime Tylenol cold and flu trying to keep my sinuses clear, because otherwise my head is killing me. I have eaten, but I should eat more. My stomach is playing a horrible game of Would You Rather? with my head: if I stay lying down, my heartburn is horrific. I breathe fire! If I sit up, my stomach is better, but my head hurts. I have fun arranging pillows and stuffed animals in various positions… as I was rambling 

So, ahem, I am lying in bed watching trashy tv and eating bon bons and cold pizza, dressing in cute outfits, shopping for more, applying masks, lotions, and thoroughly enjoying it. I am prioritizing myself. Of course, I have worked up to this. Wednesday and Thursday I slept. The mask and lotioning is tbd after nap. I am so exhausted. I feel like something is going on, sinus-wise, and I have huge dark circles under my eyes. It’s quite tough to tell, because I use a CPAP and the constant air pressure keeps your sinuses in your nose fairly clear.

I am staring down one of my biggest fears. What!? I have a lot. This one happens to be: Being thought of as lazy. Even if it’s only me who knows, at least I know I did something. It’s not good for my health.

What scares me? I’m enjoying the relaxation. I’m scared that I won’t be ready for work (not real work, since im pretty sure that ship has sailed, I mean like for family and stuff) when I need to be. What if the world falls apart without me?

What if it doesn’t?

I’m going to laze around for a few more days. I’m enjoying how my breathing is so much smoother. My husband is thrilled because he thinks this is what the doctor intended. All rest, all the time.

These days it does take all my strength and concentration to get anything done.  I know I’m supposed to get in touch with so many people but I don’t think I can function that way at the moment. I’m trying!

Hugs.

I’m falling asleep…🙁

Srsly.

giphy4This would be funny if it wasn’t so pathetic. I woke up this morning, after a fairly decent sleep. Husband went out on Saturday, his friend was in town so I got twelve hours sleep in. Then last night I fell asleep around 10:00, woke up a few times, but 6:00 came round, as it does, and I woke up cheery!

Until I had to call my husband to grab the barf bucket.

So this is what’s going on today. I am weak and exhausted, which I was blaming on the cold, but I guess is a flu? And food is completely unappealing. I’ve taken some Gravol, and I think it’s time for pill 2.

I was looking forward to feeling better today, maybe playing with some makeup, but that isn’t going to happen, I don’t think. Looks like a quiet day napping. Sigh. Again.

I bought some of the cutest clothes at Old Navy! I had to revamp my wardrobe at my new size. They had a bunch of cute items with Zebras on them! I can’t wait until they get here and I’m well enough to show you! ☺

Have a restful day, Zebra friends! 😘 I’m taking a sign from the universe to rest.

 

Not Having Fun!

giphy1

Well this is a fine kettle of wax. Or ball of fish. My treatment appointment is actually on the 13th of June. I’m not pleased. My head is hurting again, as is my back. And it started about a week early, too. I kept saying I think it’s next week or the week after. I vaguely remembered it was after my boys birthday, which is on the 11th, and I was mildly upset I wouldn’t be feeling well on his birthday.

However, I see the same doctor on the 8th for a consultation. Perhaps it’s better I’m unmedicated by Botox. That way he can see what is really going on.  I will need to discuss with husband my goals and wishes for the appointment, because he will need to summarize and translate, likely. I’m in bad shape. If I spend any time not on my side – ie in any other position, I get a headache and nausea and back spasms. The headache isn’t bad, but the jaw pain is. I’m a grinder of teeth. I do wear a mouth guard when I sleep, but it needs replacing. I just have not been well enough.

It feels like there is a point at the back of my head, and when I’m lying on it, it’s wearing down or bruised? It hurts, but it’s the only way other parts are comfortable. I will roll over and nap soon. My husband thinks I should sleep all day. I haven’t been sleeping at night. I’ve been having good naps from 4:00 to 8:00.

When my neck gets all stiff and sore, and my head hurts and my skull hurts, my cognition gets totally screwed. I honestly giphycan’t reason, it’s such a bizarre feeling. On top of that, I can barely remember the words for most things. Yet, I lie down for a while, it has to be on my side and things get much better. If it’s raining, though, things are almost intolerable. The pain is always bad. Turning my head too quickly is a nightmare. The symptoms get worse the longer I am not on my side, too. I can feel the pain ramping, so I will be going to have that nap now.

My son’s birthday is coming up and I need to prep for my doctor appointment, so if I don’t touch base or check in, I’m rationing my time as much as I can. Know I’m thinking of you, I will be in touch when I can.

I was going to type something and it’s gone from my head. I hate this feeling. It’s not me at all. My husband said ‘it happens to lots of people!’ Not to me!

Oh yeah! It’s funny, my pain always seems to ramp up towards Friday. My Mom said I used to do this as a child, too – I would wait until the weekend to get sick. Hmmm…

Be well Zebra pals! 😘

Worn Out

3o6mb6iownxr8uvrea

I posted about my weight journey yesterday. It was a post I had wanted to do for a while, and I needed some time yesterday to process.

I was supposed to go out with my good friend on Sunday, but hadn’t heard from her by noon. She called me at three, she had a family emergency. We had a good talk, and she let me know a therapist we had both been to see had died just last month. The therapist was just a couple of years older than we are. She apparently had an operation, was fine, and then caught a devastating infection. I saw her for about six months. The reason I stopped was because she was on the second floor of a renovated Victorian home. Just a stunning office. However, I was having trouble reaching it on the narrow stairs when my knees started to give me problems. My new therapist I found when I was having pelvic floor therapy. They insist you see a sex therapist. She and I really clicked, and she does other forms of therapy, so we started working together. Another bonus is, she sees me by phone, because she knows I’m actually doing the work, so that’s fantastic. I am still torn up about the loss of this lady, though. I had in my mind, somehow, thought I might go back to her, just because I liked her so much. You don’t expect to lose people so young. Or maybe I’m not young.

Therapy bills are choking us. At $200 per visit, my son is going 2x per week for Autism therapy, my daughter 1x per month, and I’m finally down to 1x per month for traditional therapy.  $1,200 is a lot. Add in my medication, which most of us covered, thank goodness, my injection fees are $225 every 10 weeks, if I want to start-up with regular and pelvic physio again, I’m going to be expensive. And then there are the cabs to and from. I’m not up to public transportation yet, and our Wheel-Trans is great, as long as you’re not in pain. I mean, I’m really lucky, we can afford it. I’m not whining really, I’m kind of scared, actually. I say it’s the money, but last time I started physio, I went into a pain spiral that lasted months. I don’t know if I should leave well enough alone. The physiotherapist said he couldn’t help my pain, but maybe my stamina. He could also help with the disassociation I have with my body. I can’t tell when someone has their hand on my leg, for example.  I guess I did that to deal with pain.

Pelvic therapy really helped me relax. I keep my whole pelvis tense, likely because of endometriosis pain. Trigger point massage was helping, but I got hit with that flare. I just am afraid to try again. Is it worth it? It was nice feeling relaxed, but I really don’t want to be that sick again.

I had the best nap yesterday afternoon. I went to sleep at 4:00, intending to get up at 6:00. Slept deeply until 8:00. But it was delicious.

My abdomen is very crampy. I have a Mirena, so it shouldn’t be menstrual. I wonder what is going on. I feel like curling up in a ball and crying. Maybe I just need a rest.

Have a bendy day! 😘

Happy Monday! 😉

xt1xghkp7hqm0jvwrs

I had a pretty darn good weekend! I managed to accomplish quite a lot, all while giving my carpal tunnel a bit of a rest. I mean, I assume it’s carpal tunnel. My GP told me it probably was years ago when I first complained about it. Now that I say this, it had to be over 20 years ago, and he didn’t even examine me. I really need to get this checked.

So, on Friday I received a Vox Box, which is sent out by Influenster.com. You get to try out things and review them on

20170128_170754

Playing with the vampy Bite amuse bouche in Whiskey,  liner in 044

different sites. I get to review Bite Beauty’s new lip pencils. They are amazeballs. On Saturday I was able to do some makeup try-on for my other blog after a nice long bath, and I tried ALL THE LIPSTICKS! It was a blast!

I woke up around my usual time of 10:00, dozed until 10:30, breakfast, coffee, vaping, bath. So I didn’t really get going until after 1:00, closer to 2:00. My son saw me in the early afternoon, and then came by at 7:00 and I was still taking pictures of myself! He must have thought… What the? But I explained that I rested, I changed my lipstick every few pictures so people can tell what it looks like! “Oooh!” He said!

Sunday was so productive! I was able to edit some of the photos I had taken. I caught upon some news during my morning vape. I love Sunday mornings, hubby makes chocolate chip pancakes! They are so good!

While catching up with things, I found out one of my newer friends is having a crisis. She had her heat shut off because she made an arrangement with the heating company or whomever and whoops! Not in the system! I know so many who are screwed over like this. Of course the CSR is lying to her because everything is recorded, but you can’t fight them. They have all the power, literally. So we got together and helped. It’s tough, because so many need help. We do make some money, but we are spending so much now, too. Son has two therapy appointments a week now, at $200 each. I go 2x per month, daughter should go every month. Then there’s living in one of the most expensive cities in the world. I don’t go out socially, so, save money there. Anyway, I just wish I could do more.

So, my daughter’s birthday is coming up, speaking of money, and we hadn’t bought her anything yet. I saw the cutest t-shirt I thought she would like, and then found one for myself, and then she wanted another, then one for her friend. They were starting at $12 USD, which is how we got suckered in. So we bought some adorable tees. Then I bought her some pants from the Gap. It’s one of the few places I can order online for her that carries tall. She is 5’9″ and wears a small PLUS she is all leg. She needed them. I had to buy myself some, too, as none of my pants fit me anymore. I ended up buying 2 pairs of jeans and a pair of ‘joggers’ although I wanted some pants. I can’t seem to find pants that are neither too casual, nor too dressy, and come past my ankle. Am I too demanding? No rips, no shiny, full length.

When I lost all that weight over the last 2 years, my pants didn’t seem to shrink much up until just recently. I went down two sizes when I ordered and they were still too big. One of the sizes I bought was a 16! I hope it fits! I am 5 lbs away from being under 200 lbs 😮

Sunday afternoon my daughter and I watched the Beware of Slenderman Documentary. I was so disappointed! It was really boring! It didn’t go into anything. I knew as much from skimming a couple of articles and reading a couple of links on Slenderman.  I do not have a huge knowledge of the Character, but I didn’t come away feeling like I knew anything more than I did before. My daughter left halfway through. The interviews with the parents of the girls involved in the Slenderman Stabbings were interesting, the testimony and interviews of the girls were interesting, but you felt it was leading somewhere it wasn’t. Ah, darn.

My boy spent some time with me both on Saturday night and last night. He’s a great cuddler. He said on Friday night, “if I got to choose my Mom I’d choose you a million times over!”

Hope you had a fantastic weekend! It’s supposed to be freezing here in Toronto for the next couple of weeks, so I am not looking forward to that! Hope you’re comfortable where you are! 😘

My EDS Hands

yoemrr0r7n8sq

As you can maybe guess, I am kind of in a strange mood today. Positive, but strange. Twisted. Amused. I slept yesterday afternoon for a good chunk. Three hours. Until my son came running home, pounding on the door because he lost his wallet and keys. Daughter refused to open the door, as she thinks he should get his keys out and open it himself (unaware he has lost said keys). Brilliant husband figured out son’s route home, called local convenience store, and voila! Found wallet and keys.

 

My wrists are feeling better today, but I will spend some more time in

Side view of brace for right hand, my thumb goes in that pink loop.

those cast-like braces. They help so much, but there is just not much to do with them on. I really need to be evaluated by a specialist. I may need one of those fancy thumb stabilizers.

I have finger splints,  as I have swan neck deformity of the fingers. I will post a photo of that one day. It’s not too gruesome to google. I find, though, the finger splints don’t relieve that much pain. It’s equal to resting. The brace or splint does do quite a bit more.

20170127_105215.jpg

Top view of right hand brace.

It’s going to be a low-key weekend. I will rest, wash my hair, maybe do some makeup try-on for my blog http://www.squidgesbeautyhaul.wordpress.com, but that’s it! Fun only. I won’t be posting, I will be resting my wrist. Maybe trying out voice to text.

I’m certainly feeling better than I was last week. Still in bed, at least I’m not crying, too! Baby steps! 👣