Monday morning and and a big week ahead


Monday morning and I’m starting the week with 4.5 hours of sleep.

My left side is numb and as I force it to move, it tingles and hurts. Really hurts, mostly the hand and foot. If I’d been lying on my left side all night, that would make sense, that’s how it feels.
But no. I have to sleep on my back because the bursitis in both hips is so bad I can’t lie on either side. I always have bursitis but its worse right now.

My back has a knife lodged in it that someone is twisting every few seconds. My right hip joint aches (courtesy of the steroid shot last week) but my left hip also has a knife being twisted in it. I have a steroid shot for my left hip in two hours. My left side needs to wake up before then, so I can drive myself there. Or I have to call yet another cab. It usually does wake up within two hours or so, enough to use, not enough to stop hurting.

I’m happy for my sister that she is finally getting to move back home – Houston is her home. But now there is no one physically close to me whom I can call in an emergency, or if I really need help.

My right eye has cleared up (of course) because I have the ophthalmologist at 3:15pm today. Still, I will ask for steroid drops to keep on hand for next time. I used to always have them on hand, because my eyes were inflamed so often. So I guess its good to reflect on that…my eyes have been better over recent months. Focus on the positives. And my left eye is blurred anyway, so it will still be worth going and very interesting to see what she says about that.

If I’m really lucky I’ll get a nap in between my steroid shot and my ophthalmologist.

I tapered to 10mg yesterday and my knees, hands and feet are all swollen and aching. Not knives, deep aches. This used to be normal for me. I do not want this to be normal for me again.

You can get used to anything. I do not want to be used to this. I do not want to relearn how to smile through this, and walk on a treadmill and ride a bike through this and even do a 30 minute class through this. This is not OK, and it is not a way to live.

I wish I were seeing my new rheumy today, because the swelling is evident, and swelling is what they always look for, despite many people never having much swelling. I have taken some photos, but they never do it justice, and I don’t know if he’s the type that will look at photos. He lists himself online as a skeptical rhuematologist. Hmmmm. I wonder what that means.

A second opinion will be good regardless, however. My MRI results will be sent to him as well, and I can hopefully pick them up tomorrow and see the report before I see him, so that I’m prepared. If it doesn’t show active inflammation, I’ll have an uphill battle. The x-rays show damage done, and nothing can fix that. But I need dmards to prevent more damage,

But that’s tomorrow’s battle. Today, right now, I need to move. Typing with one hand is a bitch. The anger I feel is a bitch. The night terrors are a bitch. Not sleeping is a bitch.

I haven’t yet been able to look at my file. I’m pretty sure I could take the anaesthetist down. The hospital. But the surgeon is probably teflon…and she’s the person I hate.

I have never hated a person before. I do believe I hate her. I had enough to deal with before she effed up my life. It’s nearly 8 weeks post op now. 8 weeks ago I had lots of physical issues to deal with, but she has made them worse. I guess I should thank her for showing me who cares about me and who doesn’t though.

Most importantly I’m going to make an appointment with the new therapist my friend recommended. She specialises in meditation, and mindfulness training and helped my friend get through a period of traumatic nightmares. I need to find calm. I don’t want to be angry anymore.

And I think I’ll buy a puppy. Because that’s how my mind works right now. How can you not be happy with a puppy around???


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