It’s been awhile since I attempted to actually write a post. I’m finding that the prednisone I’m on has my thoughts befuddled a lot. Trouble focusing, reading, formulating sentences. I think my family is somewhat disturbed that I’m not getting back into the swing of things on here.
Last night his lordship came home with a new book for me. “712 More Things To Write About.” It was his way of nudging me to get back on here. And as much as I appreciate it, it takes a certain kind of prompt to make me want to write. Personal, reflective… I’m pretty sure they don’t really get it. That’s ok. It’s the thought that counts. He also brought me home one of those grabber/reacher thingies to keep from face-planting in my chair the way I did a few days ago! LOL Now THAT’S a practical gift I can appreciate!
It’s been 13 days now since they restarted the med. I’m still struggling to go up and down stairs. When I can conquer THAT I will feel like I’m making good progress. Another nine days till I see the neurologist again and he decides whether to add the med behind door #2 as well. Got my fingers crossed that I can avoid that one since to do so would mean I have a mild case of this Myaesthenia Gravis.
In the meantime, a second one of the ladies I’ve visited for years through church has passed quietly away into the great beyond. Right now Jan is no doubt talking someone’s ears off! She’s 87 and always had a lot to say. This is the second memorial service I’ve missed for one of my gals. It feels wrong not having any closure, so I’m just mentioning it on here. She was a sweetheart who lived a part of her life in Ireland, and I always loved seeing her pictures and hearing her talk about it, about trying to raise an “American” family there.
Her last year has been very difficult with dementia and several falls. But she never lost her spunk — and especially her constant curiosity. I want to be like that. I want to walk into whatever is beyond and think “What the heck! That’s not what I was expecting! Who is in charge here???” I can just hear her now. 😀
So for my friend Jan, today, I squirm out of my box where I’ve been hiding and try to take her mantle on my shoulders. She was a hell of a woman. Love you Jan.
Impromptu Promptlings 
I found this a very moving post, and with all my heart I wish you a graceful and speedy journey along recovery road. You haven’t changed a bit in terms of the voice we get to hear by reading your words; warm, witty and wise as ever. Great to see you back here… Love, Harula x
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Thanks, hon. That’s actually comforting. 🙂 I’ve been sitting here day after day with this list I made from your “robot” prompt and this damnable prednizone will not let me put together a coherent thing. I’m almost angry about it. Strange reaction, but I feel like that med has stolen my only outlet! I’m collecting your prompts!!!
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It’s hard to get back onto the writing wagon once you’ve fallen off, isn’t it… I’m struggling too.
I like the idea of your friend Jan sorting things out up there 🙂
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So sorry to read you have been ill, Calen! Prednisone is sort of a magical drug, in that it really can help a situation. I was on it most of my life and my girlfriend could always tell how much I was on by how I acted. Haha! It sort of takes you all over the map emotionally. She used to say, ” uh oh….we’ve entered the predni- Zone. Dodododo do do do do (Twilight Zone) Haha. No fun. Hope it works!!!
Take care of you!
Peace and Love,
Mary
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Holy cow, kiddo! What kind of side effects did you have? I’m still trying to figure that out. They put me on it once for about seven days then stopped me without tapering off, and I’m wondering if it’s taken so long for it to kick back in because it kind of shut my own steroid production down. I’m clueless.
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How much are you taking? Are they tapering it this time? I used to take 60 mg, and I was just sort of more emotional, had nervous energy, puffy, sore back. Just stuff I hope you don’t have. Everyone is different. I’m just sad you are feeling so poorly. Must be scary not knowing. Chronic stress can certainly lower your steroid production because you produce more of it under stressful situations. I hope you will let us know what the neurologist says. So sorry, Calen!! ❤
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60 mg. a day for 90. He said he’d reevaluate when he saw me this coming Friday. Everyone tells me I should be gaining weight on this stuff. I’ve dropped 22 lbs., I’m white as a sheet, and my eyes have red rings around them. I did, however, manage to put some makeup on this morning without poking the mascara wand in my eye so I could go to church and not look like I was there as the “funeralee?” I’m not doing too bad ornery-wise, but my filters do seem to be slipping now and then. Usually, however, I get depressed rather than holler a lot. I guess my main question is do you have flare-ups? Relapses?
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What kind of flare ups and relapses? Prednisone is used for so many things. I don’t know what MG is like. Mine was for COPD (asthma and chronic bronchitis, not emphysema), so yes, I do have relapses, but mostly my meds keep it under control. What is it like for you?
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Myastheina Gravis is an immune disorder. The thymus secretes a chemical that acts as a translator between the nerves and the muscles in the little space between them telling the muscles what to do. But I have antibodies that attack the chemicals and break them down. So there is virtually no communication, hardly any muscle strength at it’s worst. Like a rag doll. I’m gradually progressing to more A days than C/B.
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Wow, Calen. Sounds awful.
I have something way less debilitating, but very hard for me. It’s called Cervical Dystonia. The brain (basal ganglia) never sends the message to my neck muscles to relax, so they are always contracted. It creates head tremors as the muscles fight each other for control, and it yanks my head back and holds it back to the tune of about 30 pounds 24/7. It is so frustrating to have any kind of limitation, isn’t it? And yours sounds particularly debilitating. I have tried so many different meds, and have narrowed it down to 3 at night, since it won’t let me sleep. But the one that helps most during the day is very very small doses of cannabis. Not enough to come close to getting high, but it does something to the brain. Who knew?
I’m glad to hear yours is a little bit better. I admire your attitude! Do you think the prednisone is helping?
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Yeah, finally, after about three weeks. They started me on it in the ER and it worked pretty quickly. I’m wondering if that’s because I’d been on three antibiotics for the pneumonia already. But they stopped it after five days (without tapering me off) because I couldn’t be on it for the neurological tests. Then when they put me back on it it didn’t do ANYTHING for nearly two weeks. Made me wonder if not tapering off of it had suppressed my immune system or something. I did get up enough nerve to go outside and get the mail without anyone here with me today. Major anxiety! Got halfway back to the house and thought, oh crap! Not going to get up those stairs. I did, very slowly. I take them about 3:30 p.m. and I hate how I feel for the next few hours. I’m not sure what’s up with that. It’s funny you mention your neck. That’s how this started the very first day I was in the hospital with pneumonia. They totally missed it. And now my neck muscles are the ones that are the most fatigued even when I’m feeling pretty good.
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You were brave to go to the mail box! Feeling like that?! Steps? Wow.
It’s kind of weird that so many people are being diagnosed with neurological disorders right now. I know a fair few.
Mine is a movement disorder and Bill, my husband is in testing for Parkinson’s.
I mean, are the numbers going way up, or are we just in the age class that gets stuff like this?
Btw, have you heard from Fim at all?
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The amount of people being diagnosed… Got a feeling it seems like more because there ARE more of us that age. It’s kind of like people thinking tornadoes are getting more violent and frequent killing way more people, but a lot of it is there are just more people building communities where the tornadoes are. At least that’s how it seems to me. Yeah, I talk to Fim every week for a couple hours on the phone. In fact she left a comment on last Wednesday’s What If blog. Maybe she’s starting to get the urge to come back? 😀
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Being sick sucks. Hope you are on Recovery Road.
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Especially if you’re a Gemini and one of your twins has a mega Type A personality. (Or MAYBE she’s just a control freak! )
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A lovely tribute.
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Thanks, hon… 🙂
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Nice tribute. It takes effort and will-power to make progress. Keep at it Cheryl!! It’ll come!!
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It’s coming. It has to. His lordship is getting ready for a knee-replacement. Gotta be up and around to take care of him. On the up side, I’m having a B — maybe even a B+ — day today. Bran has been helping with dishes and laundry. Amazing what a little support will do to lift your spirits! 🙂
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Such a lovely tribute to your dear friend. “What the heck! That’s not what I was expecting! Who is in charge here?” 😂😂
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That was Jan! 😀
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I guessed that 🙂
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What a lovely tribute to a dear friend…and so glad to see you writing again…feisty with warmth and love.
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Thanks, hon. I appreciate your wonderful attitude through everything that’s been going on with you guys. You are quite the role model!
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She’ll always be with you in your heart.
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And more than a little in my head, I think! LOL
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Here’s to Jan! (Raises glass)
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thanks, Lori. She was a Southern Bell born and bred. Never visited her without having tea and cookies! 🙂 And usually a walk around her garden. I think she truly was a misplaced individual out of time. 🙂
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