Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. 🤣 I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” 😂 she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around.  Or is sleeping. 😊

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes?  I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! 🤡 Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

💜

PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. 😄

Irreplaceable Me

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How many days has it been? A million? Ugh.

I’m so bored. All I can do is sleep and sometimes take medicine. I’m way off my routine, I’m not sure what I’ve taken on time this week. Actually,  I’ve mostly missed my 3:00 pills and my mmj. That should be it. My 6:00 a couple of times. But my husband has been getting home earlier and checks now.

I’m seeing the doctor tomorrow! Husband and I are making our list tonight of what we have been seeing. I’m not going to let him bully me into hoping things will get better. This has been consistent pain now for months. I don’t know that I necessarily need more pain medication, but I likely need more investigation into what is going on. This ‘it’s just eds/endo/fibro’ stuff isn’t going to work anymore. When I’m losing use of my hands, when I can’t eat for several days (usually when I have the flu I can take something in without the digestive problems I’ve had. I woke up this morning to find myself on the toilet, so, yeah, ew.).  I want to get this neck thing straightened out -literally! My knees, these damn headaches, the list goes on.

The positive side of things is that I’m reminded how valuable I am to my family. My son turns 13 on Sunday, and my husband has been admirably juggling everything, however the gifts had not been bought. That’s usually my domain. When I have a flare-up, I can still often get things done. When I’m completely out of commission and can do nothing but sleep? Then we have a problem. Then we start to see how not having Mommy around affects us.

I woke up yesterday evening around 7:00 to find my son hovering at the foot of my bed. He hasn’t been diagnosed, but he is definitely on the autism spectrum, and he was doing a little dance of impatience with hand flapping as he waited for me to wake up. As soon as I opened my eyes he dove into my bed and exclaimed he was waiting for me to wake up because he wanted a snuggle. He settled right in beside me, and we watched TV.  It was lovely.

It’s good to be needed.

These are the sleep shorts I bought at Old Navy. I bought 2 pair 20170606_201735of shorts, I think I have 3 complete pajama sets, as they have camisole to go with them, a romper, a strappy top, and a pair of socks all with the zebra pattern on them.  I will take a photo one day when I’m wearing them, once they are all washed up! It’s nice to buy from the regular size part of the store. There are so many choices!  I’m almost redoing my wardrobe. I have so many clothes to get rid of. I don’t ever want to get big again. But we can’t always control that stuff, can we? My biggest things are not eating when I’d rather be sleeping, because sometimes I just eat to keep myself awake, and keeping an eye on my sugar intake. When I eat too much sugar, my weight skyrockets. When I stop, my weight drops at 2 lbs per week. Magic.

OK.  I’m tuckered out. I have lots to do for tomorrow.

Have a beautiful day, Zebra friends! 😘

Oh, Great! *Eyeroll*

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Fantastic development. Along with the neck pain, back pain and dizziness, in there with the nausea and headache, forgetfulness and general discomfort. Alongside the inability to sleep properly and horrible concentration, it seems I’ve caught the cold the kids were passing back and forth.

Fortunately, it’s not too bad, and the CPAP machine I use tends to cut down on the amount of mucous in my nose, so I have fewer breathing issues. I just have a vague sore throat and have this mantle of exhaustion that is unusual. I’m used to being tired, but I’m achy and uncomfortable, I can’t settle. I think that tipped me off that something was off. Also, my nose is booger heaven – ugh.

Lack of quality sleep is not helping my concentration or cognition. I will be watching a show, it will cut to commercial, and I will completely forget what I was watching. I’m having trouble communicating verbally, still, most of all, and paper is only marginally better. (I could be writing my name over and over thinking I’m being brilliant right now!). There is one Simpsons commercial that comes on, and I get so excited, thinking I’m watching the Simpsons. I feel like such an idiot when the commercial ends.

My Mom seems to think my family has terrible luck and absolutely everything happens to us. I admit, it does sound shocking to listen to someone with chronic pain describe flare-ups. I had been silent for years, but I think people ought to know what my life is like. Not in a complaining way, but in a this-is-how-people-live way. People have chronic pain. This is my life. My kids have had quite a few illnesses this year, yet this is my first cold, I think, since being ill at Christmas, with the rest of the world, and it’s mild. My husband has glaucoma issues, cataracts, and arthritis. Both run in his family. My kids have Autism. Sounds like a lot of families I know. Maybe these families aren’t so open, I don’t know.

I should get that nap.

Stay stripey my Zebras! 😘

Fitting In

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I’m struggling a bit. But it’s only a bit. I’m finding it difficult these days to keep ignoring obvious ableist behaviours. I’m seeing it everywhere, stores offering special prices if you just come in, my own government just offered a special movie points program if you added a special fitness program and counted your steps. The former mayor of the city is running a charity to climb the stairs of the CN Tower, with language that assumes we are all at home sitting and waiting to join him. I’m increasingly feeling like I don’t belong in this world. It certainly wasn’t made for me. I don’t know if I should speak out.

My flare-up seems to be under control for the moment. I’m hopeful I can hang on for a while. I think Ren of Broken Down Body was really on to something when she suggested my psoas muscle. This could explain the whole pain wrapped around my back and everything. I’m still taking everything in my arsenal, and trying to rest.

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I was so absent-minded yesterday, I put a piece of bacon in my drawer. Don’t do drugs! 😃

My husband has his eye infection thing back. We assumed it was an eye infection, treated it with steroids, as soon as those stopped, his eyes were red again, started stronger steroids, those stopped on the 23rd. We expect it to be a systemic reaction maybe? The eye doctor may send him to either our GP or the ER to get bloodwork. The concern is with the ocular swelling that was going on. He’s booked tomorrow semi off work, because his eyes hurt so much, especially with any light.

As I think about it, my wish is to be average for a while again. I miss so much. There is so much I’ve given up. This stupid illness. I try to have as much fun as I can. I try to hide my disappointment from people. I swallow a lot of my resentment. If they only had an inkling.

My life was supposed to be so much different.

Stay in the light, zebras! 😘

Pain, Pain Go Away!

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Finally, I came to my senses last night and took a sleeping pill. I don’t know if the nights of not sleeping contributed, or if this was on the way, anyway, but when I woke up, that right lower quadrant pain was searing. It started last night, actually. My husband was making dinner, and I went into spasm. It took my breath away. I wanted to call him, but I couldn’t even breathe. It lasted for nearly three minutes, but it felt like an hour.

Today it would twinge and spasm with any movement. I took my allowed medicine, the breakthrough stuff, and tried to relax, but it’s hard. Eventually, the lack of sleep and meds caught up, so I took a nap. I am feeling calmer, but still feeling like I’m sleeping with a live grenade.

These are days I just want to eat sugar and cry. So I had some cookies and my nap.

I still won’t see my pain specialist about this until June. My choices until then:

  1. Attempt to harass his staff
  2. Rush him at the next appointment in April
  3. Complain to my GP, who sent me to a specialist so he doesn’t have to deal with this
  4. Trips to the ER
  5. As much breakthrough medication as I can

I’m slightly nervous about harassing his staff, because they’ve been fairly clear they have nothing. I will definitely mention it in April at the next appointment, but I’m kind of annoyed the office staff goes *shrug* when you are in pain. My GP deals with general stuff, and is in no way prepared for this, so I’m not sure he’s appropriate. Hauling my ass to the ER isn’t effective, may get me branded a drug seeker, but if it gets too bad, I’m at a loss, not knowing what else to do.

What I will try for the next couple of days is medicating to the fullest, staying still, resting, relaxing, and hoping?

Any suggestions welcome, except ‘go kill yourself’. Wait, this isn’t Facebook.

Have a pain free day, my Zebra friends! 😘

Worn Out

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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! 😘