Nachos, Flanders-Style!

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I had my Botox for migraine about nine days ago, and I feel the toxin beginning to work. The injections were an adventure. My appointment was for Thursday at 4, and somehow it was changed to Friday at 9, but nobody informed us. We learned through the grapevine. When we arrived on Friday, I was in a lot of pain, still static on these opioids, holding strong. I have not been able to sleep much, just two or three hours a night, and then every fourth or fifth night I sleep for ten hours.

I am waiting for my appointment, and three staff members are chatting. Then two start scream-laughing. I absolutely blacked out. I am so sensitive to noise and light, in pain so long, sleep deprived, I have no idea what happened,  but I found myself in a quiet room with husband in the dark. Crying.

Next, my doctor comes in. Have I mentioned she looks like Amy Adams? She drives needles in my face I can’t even feel. Then she tells me she is leaving to do a fellowship. She has referred me to her mentor, though.

I’m crushed.

I’m seeing my pain doc this week. Days are meaningless now. I’m so tired. My stomach is so upset. I’m constantly nauseated despite the medication.

Husband and I undertook an Ehlers danlos Triathlon last Friday. I had an EEG, bloodwork and an xray in two different hospitals in an hour and a half. We left the house at 8 am. and I was home with pajamas on and nachos by 10:58 am. Not bad. I eat FODMAP nachos, which are the corn chips, with lactose free cheese melted on top and lactose free sour cream. Yay. It’s my traditional after doctor food.

I hope this next appointment is helpful. I would like to have enough medication to function and to move without crying out all the time. Sleep would be nice, as I am so very grouchy.

I very much don’t want to live my life like this. I get so many comments about how my pain is from inactivity or I don’t move enough. It’s because I am in so much pain, geniuses! I’m glad they are actually looking at my pelvis and the structure at least. But, do they not get that if I wanted to sit around all day, I would sit around all day? I don’t need an excuse or a cover story about having chronic pain. My husband makes decent money now. I could just be a housewife. But I did actually have hopes and dreams.

🦓

 

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! 😘