Slightly Brighter Day Dawns

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You know how it is when you make a big deal about something, it always resolves itself immediately.  I woke up this morning feeling not quite so desperate. It’s an awfully good way to feel. The pain is still very much there, and my back is screaming at me even as I’m lying here, but I don’t feel quite as nauseated, and I haven’t even vaped yet this morning as the kids have just got off to school (I like to wait until they are out of the house if they are going). I feel that may take care of things, but I do have my breakthrough if not.

After I get my meds in, I expect to be somewhat comfortable as long as I don’t move too much. Stay loose, just maybe I can slip in the tub later if I’m good? Maybe?

I will be lying very still and calmly today. Trying to get some good rest in. I don’t want to exacerbate things again. Not to that level.

If the pain doesn’t subside enough we are aiming for an emergency room visit if we have to on Monday. I’m Canadian, so we had our holiday last week. The kids would be in school, less chance of upset. Husband wants to be with me, he’s expressed this, there is a major crisis at work, so this would be optimal. I have time to see if it resolves, and time to rest. Naturally, if it becomes too unbearable, we go, but even though my kids are aged appropriately, I am not certain leaving them alone is possible, and bringing them is also problematic. So my husband would have to drop me off, and that isn’t ideal, either. I’ve had some poor treatment in hospital, including the doctor who told me that I was “just constipated”. I grabbed his notes and threw them down the hall I was so insulted. I hope I’ve matured beyond this.

Time for rest. And vape! 😎

I’m expecting comfort. Not miracles!

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! 😘

A Delicate Matter

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Firstly, I am in a slightly better position as to where my pain is. I’m more stable. The area is still very tender, and I’m trying to be delicate with it. I’m as medicated as I can be, and am trying to relax.

Another piece of good news is my son is on his way home from his school trip. I’m so pleased he did it, as there was some questions about his anxiety keeping him home.

Part of relaxing, I’m finding, is staying away from social media. This is unfortunate, as I don’t have many other ways to socialize. I made many new friends after Trump was elected President in the United States, many of us lefties banded together, they let me play from Canada, and I was very happy to do so. However, I’m finding many people are not at all sensitive to the needs or lifestyle of someone with chronic pain or with a chronic illness, and it’s been a huge adjustment. Not just with new friends, either.

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This week, especially, with the lack of sleep and needing to take extra medication has really underlined this phenomenon to me. I mean, I know I’m a sensitive person, but there’s a point. I had posted something and worded it awkwardly, and instead of saying I worded it awkwardly, my friend made fun of it, like I knew, or had done it on purpose. I don’t mind the teasing, but when I’ve goofed, because I’ve been drugged and sleep deprived, don’t think I’m going to ‘get’ something. It’s almost like expecting the parents of a newborn to pick up on subtleties. Not going to work. I constantly remind myself to be flattered to be mistaken for a normal, but I get frustrated.

I had another person go off on me because I used a word she didn’t like. Often, I find, people will hear I’m disabled and hear ‘captive audience’ or ‘someone always available’ those actually in this situation know there is so much we can do, if we want to, or have the spoons! Unfortunately, I find I often get imbued with many attributes by people I’m newly meeting, which I don’t possess and are then punished when I turn out to be me.

I am particularly sensitive to these issues, I suppose, because I work so hard to express myself. It’s not something I take lightly, and I actually care about people, so when I am shoved aside accused of being uncaring based on a poor word choice after a lengthy disclaimer about being tired and on heavy meds but still trying to be there… it’s frustrating. Do people hear disability, think deformity and don’t even consider pain?

I suppose it’s just hard right now. I have a few close friends,  but no one nearby. I have friends on social media, but it seems many of them are leaving in droves as I can’t be political enough or posting enough for them. I am getting damn sick of the sexual harassment. It’s not frequent, but it’s traumatizing. Especially when you feel awful.

I didn’t mean to be such a downer today. I just feel a bit lost. I’m not sad or angry, just pensive.

Hope you’re having a great day, Zebra friends! 😘

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! 😘

Seriously?

Just trust me Go here and read this article. This guy thinks women can glue their labia together and it will stop menstrual flow. Uh huh.

Painsomnia got me. I’m so annoyed that I can’t really talk to my doctor about this until I see him in June. I see him before this for my Botox treatment on April 4th. But we don’t have the time to lay it on the line and really go through it all. Maybe I should bottom line everything in a post, even for myself. I have a couple of options, as I see it.

  • I can douse myself with sleeping pills, take my breakthrough pills, sacrifice my steadiness for a bit of loopiness, see if that helps.
  • Or I can call his nurse, who is kind of brusque and see what she advises.
  • Suck it up and quit complaining
  • Whine and complain until I’m friendless and on my own.

I don’t like number four very much, and I’m not very good at holding my tongue, so three is out. I think I will start with one, and progress to two. I took a breakthrough dose of my pain meds and it did nothing, since I am allowed two I will try another, it’s been over three hours! I suspect the nurse would suggest the breakthrough meds first, anyway.

My back hurts so much I can’t sleep. I just want to cry. I don’t even know what to do to make it stop. I keep thinking heat, but that makes me wince. I can’t even be still.

Since sleep is useless, I’m going to work on a pain inventory page for the blog. I think it will help.

I hope sleep is not eluding you, fellow zebras! (Respecting time zone differences of course!) 😘

 

The Daily Grind

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I was looking for baby photos of my daughter to post on Facebook to embarrass her, when I came across this one.  My daughter took this of me taking a Selfie,  because she thought my hands were hilarious. They do look pretty EDS-y. Is that a thing? You can see my index finger clearly showing swan neck deformity. This was taken October of 2015.

I found the makeup palette I was looking for. It was in the drawer beside my bed. I don’t often wear my glasses at home, so I sometimes don’t see things in front of my face. I swear I looked there, though! With my glasses and everything! I also promised my husband I would call and confirm his appointment with a sleep specialist. Promptly forgot. Sigh. He remembered and did it, though.

My son didn’t make it to school all week due to anxiety. I feel for him. Grade 7 is horrible. Aspergers is horrible on the downslope. On the upside, it can be beautiful. I kind of want to blog about this journey, but three is too many. Beauty will have to go. Not ready yet.

I’m scheduled to see my friend tonight and she sent me an email saying she’s ready, but she understands if I can’t make it. Which means she loves me, but she loves her bed, too. 😁 I completely get it! I asked if she would mind coming over and ordering in. She gets to see my family, always a treat. But it’s a quiet night. I hope it’s okay, because I don’t know if I can go out. I’m getting frightened of going out without my husband. Part because of ice, and part because of pain. My back is so sore, still. I can’t even really sit up very well. My abdomen, holy moly! I am having the worst cramps. Everything from under my breasts to my pelvis is just one knot of pain. I don’t even know how I’m typing right now. Distraction.

I wanted a bath last night, but my husband was working from home and just sent me to bed at 1:00. Once again, woke up at 6:30. But this time my stupid cable box wasn’t working. He wasn’t home yet, as he took our son to physio, but he worked on the TV thing when he got home. We need a technician now. It’s just my room, too. Boo.

Of course, because I slept so long yesterday I missed a dose of medications, and that can’t be good. I’m probably long past it now. I still want to curl up and sleep. I know if I take extra medication, it will knock me out anyway.

I’d better do something, or I’m going to eat all the cookies in the world…Likely check my social media then nap again.

Stay bendy, my zebras!