In the Blink of an Eye…

It looks like this didn’t publish when I tried to publish. Sorry. Let’s attempt it now, and I am working on another post…

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My beloved Grandmother died on May 7th. It was as unexpected as you can get for someone who is 96 years old (97 In August) and isn’t terribly ill. She was an amazing lady. She was my inspiration and role model in all things. She was so tough. She never let anything slow her down.

It was my utter frustration in not being able to attend her funeral, it being in Winnipeg, that led me to send a rather nasty (Canadian nasty) note to my doctor about me having to live in darkness while my life passes me by. Well, my doctor had me in her office and was sticking needles in my face within two days.

It seems she was sending me messages through the clinic, which I was not receiving, of course, and I was doing the same. Now that we are in touch, we can bypass the stupid place and get to business.

As for the MRI, my brain is fine, no leaking, no shifting, I seem to have good old fashioned chronic migraine. The doctor has a treatment plan, a bunch of it is old stuff from the last clinic, getting me off an old medication, Botox regularly. She feels I can probably feel good some of the time.

I was doing really well before, when my treatment was regular, so we shall see.

Sitting up is so amazing, I can’t even begin to tell you.

Why do people insist on wearing perfume to a headache clinic? Why?

Love

Progress!

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Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! 😘