Bad to Worse

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I suppose it makes sense I didn’t see this coming. It would be logical my brain would block out the natural next step, wouldn’t it?

My BOTOX injections have been cancelled.

I was due on August 22, so I’m about two weeks away. This means my migraines are slowly ramping up again. For me, this means my headaches that I usually have at the front of my head are slowly coming back. They are almost constant once they are fully ramped up, which they usually are by the time my appointment rolls around.

The person who called said they would reschedule once they had things sorted. But it would be after August, for certain. My back is at a state right now where I can barely move. My neck… It’s in bad shape. By evening I’m incoherent. I was hoping within the two weeks I would be able to touch base with him and at least ask him.

We still have no idea what is going on, however, husband dug around and found a couple of complaints at the College of Physicians and Surgeons of Canada. One is about him improperly examining a woman’s breasts, and another is about improper procedure. Both within 2015-2017. Now, this doctor is 74 (we figured it out). I have been his patient for eleven years. I am very sorry if he made someone uncomfortable, but I have trouble understanding the first charge. I do know what it is like to be in pain, however, and I have seen the looney-toons that walk into that clinic. I can understand a misunderstanding happening. I am completely certain she believes she was violated. There’s a reason I bring my husband along, however. He often sees things without the haze of pain and remembers things I don’t. Also: witnesses.

However, yes, often the staff would forget to have him or us sign consent forms until after the procedure, and that is bad. As head of the clinic, he needs to be responsible for that.

Now, I don’t know if this is why he is off, or the stress has gotten to him. But I understand the first complaint. If the second complaint caused a stoppage of business, I am enraged. Complaining about something like this to the College and denying thousands treatment, especially after losing another pain doctor recently (He murdered his wife, but still)

Not only that, but my pain doc prescribes a bunch of my meds that no other doc can prescribe.

Having said that, the office manager at the EDS clinic at General said we should hear within a month, and if not to call and find out what’s going on,

Husband will call and update her and my pot doc to advise them of the situation and let them know things may be changing going forward.

I am shopping my blues away. Thank goodness it’s cheap crap on Amazon. I will show you some of the cute stuff I acquire.

All we can do is wait and see. I may just give up and go to the hospital. I have enough medication to keep me semi-conscious and get me through. Actually, it’s not that bad. I make myself zone out so I can be in that hazy semi-sleep state. I am going to be much better at taking my medication on time.

I’m even going to work on vaping. I’ve stopped because it hurt, but I’m going to start again. It shouldn’t hurt after a while!

Ugh.

❤

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!

…as a Kite! ðŸ˜„

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The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘

It’s May!

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My search for a Maypole .gif rewarded me with this. It amuses me, so I’ll keep it!

I’m still feeling weak today. I’m not nearly as nauseated, so I’m kind of eating non-stop. I only had 589 kcals yesterday, so this should even things out. I know I’m trying to keep myself from falling asleep. I’m annoyed because I took yesterday and lay around. I want to play today. But my body is saying no. My back hurts, my neck is just intensely painful, and my abdomen, Oooh, it’s awful. I’m tired of this. I’m tired of whining and complaining.

I would like someone to come and sit with me for a while. Someone I don’t need to talk with. I used to watch garbage TV with my sister, but she’s living in Beijing. I miss her.

I should probably give up and have that nap. It’s not going to happen today. Not now, anyway. I think I need breakthrough meds. Texted the husband to ask if we should follow up with the pain doctor.

Some things I want to say, have to wait a bit until I feel less like I’ve been hit by a steamroller.

Have a good afternoon zebra pals! 😘

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! 😘