Helpful advise

[daworm]

I suppose they are trying to be helpful, I may have been guilty of it in the past myself.

[TooSore]

Oh yeah! Add - do some stretches, get a new mattress, eat gluten free or vegan, go to the naturalpath and take some supplements..

My favorite though is my Mom who sympathizes and says "I get that too" as if feeling like I'm 30 years older than I am makes it all right! Particularly when her mind is clearer and her body in better shape than mine.

[Hidden in reply to TooSore]

It's taken years to stop my friend talking about us as the same age..she 83 this time and I am 57. Her daughter is 50. She says she forgets but it feels bad when someone pops you in same age bracket. She is 9 days younger than my.late mother. And is more agile than me.

[GOOD_GRIEF in reply to Hidden]

Just between you and me, I can deal with PredHead. I can deal with chubby cheeks and a larger waist. I can deal with some acid indigestion and skipping my after dinner coffee and whiskey.

What I really miss is my strong, flexible, graceful and dependable body capable of leaping small snowbanks in a single bound. I also miss throwing snowballs with fearful accuracy. I even miss shoveling snow.

That's it. Today's 5 minutes of self-pity are up.

[TooSore in reply to GOOD_GRIEF]

I agree with you. Not being able to trust your body, for exercise, work, hobbies, sports. Also now worrying about any new little ache or wiggle. Not always fully trusting a doctor's quick explanation.

[GOOD_GRIEF in reply to TooSore]

Since I took control of my reduction (after a disasterous drop form 20 to 15 last spring that crippled me for most of the summer), I don't worry about the aches or niggles much anyone. Aspercream, or an ibuprofen (I think a lot of my niggles and aches come for compensating for parts currently not working as they should), or an extra 0.5 mg Pred for a day or two quells those.

But the new jiggle of my inner thighs, which I never had before in my life, now that bothers me. A lot.

I'm aiming, though, for long walks on the beach this year to help firm up those thighs once again.

There's always hope.

[SheffieldJane in reply to GOOD_GRIEF]

I think we’re supposed to avoid Ibuprofen because it’s harsh on a digestive system already stressed by Prednisalone. My husband takes paracetamol and codeine for his back pain and swears by it. The give me constipation so I’m stuck with paracetamol or in dire straights Tramadol. True PMR pain only responds to Pred for me. I know what you mean about the compensatory pain. You’re lucky to have a beach to walk on.

[GOOD_GRIEF in reply to SheffieldJane]

At my doctor's direction, I never take ibuprofen unless it's at least 4 hours before or 4 hours after taking Pred, and I never take any medication without a meal unless otherwise indicated. I'm also really careful not to take it near a calcium dose, another digestive irritant for me. I have all the times programmed into my phones so I keep careful track of doses and schedules.

The summer before PMR, I spent hours walking and running on the sand and in the surf playing Frisbee with The Lucky Dog. I also used to swim the open ocean, with or against the tide, from Halsey Neck to Cooper's Beach (2.5 miles each way) just for breakfast and often for lunch too.

Last summer I could barely walk from the parking lot to the boardwalk (about 1000 yards), much less think about getting in the water. I didn't even get in the pool at our beach house, because while I could dive in, I was afraid I couldn't climb out.

I'm hoping that this summer I can walk across the beach and get my toes in the ocean again. That water is far too rough to think about swimming there this year (sigh), but we added stairs to the shallow end of the pool at our house so I can get out by myself instead of trying to haul myself up the ladders.

Slowly, slowly we catch monkey.

[SheffieldJane in reply to GOOD_GRIEF]

That sounds like real progress. We sometimes forget just how far we’ve come. You’ll get those thighs trim in no time. Well done!

[GOOD_GRIEF in reply to SheffieldJane]

Thanks, Jane. I am so much better than I was last year, and I hope to keep the rocovery going in the right direction.

The Lucky Dog may have to learn that she can't just dump the Frisbee in the ocean after she catches it, and has to bring it all the way back to Mom's feet if she want another go. But she's smart, and empathetic, too. She's been practicing in the yard in the snow, and I think she's caught on. She gives me such a lovely smile when I manage to sail it across the yard for her, and licks my hands until they're warm again when we come back inside from playtime.

What a great dog! I'll have to post a photo.

[SheffieldJane in reply to GOOD_GRIEF]

She sounds delightful. My other half would love one. Perhaps when he retires. Send a pic.

[daworm in reply to GOOD_GRIEF]

I still shovel the snow..sometime I pay for it, sometimes surprisingly not...and an occasional beer...

[GOOD_GRIEF]

Well, that is, actually, what we tell each other all the time, isn't it? Get lots of rest and take your D and your calcium?

[artfingers]

Sometimes I feel like complaining, but when I get on the forum, I am very grateful for what I can still do. The support here is wonderful, as is the information and a chance to talk with people who understand. Thanks from me too for everyone's input and help. I am glad to be able to shovel snow, but would rather be in Florida!

[Lanakay]

I ordered Kate Gilbert’s book yesterday and also printed information from the computer. I will give it to my sister and daughter to read. My sister said I was being a wimp and should just continue taking the prednisone instead of tapering because I feel bad the first days of a taper! My daughter said I should just stop taking the prednisone because of the side effects! They don’t even bother to be informed about it therefore don’t even know what they are talking about!!!

[daworm in reply to Lanakay]

I talked to a lady yesterday and mentioned I was taking prednisone and was tapering down, she said what dose, I told her I was trying to get to 12mg, had been on it since October, she said "I take 70mg a day for years,I'll be on it for life " she said even at the high dose she has few side effects that bother her and would be dead without it..never even got the "moon face"..she has vascular heart problems...on many pills..told me of another person who i didn't realize was on it and he's at a high dose for years...sorta puts my 12 1/2mg in perspective.....I'm actually on no hurry to reach zero, not as long as this "thing" is going on...at first I was terrified of prednisone...who wouldn't be if you read all the side effects, this forum set me at ease, it's a great help...

[Soraya_PMR in reply to Lanakay]

That would make me mad Lanakay !!

Somewhere between your sister’s method and your daughter’s method lies sanity. Which is exactly what you’re trying to do, reduce the pred, reduce the side effects, manage the inflammation, and deal with life. ‘Advice’ like theirs is not helpful. I hope they read the book and educate themselves. Then maybe an apology to you? Don’t hold your breath!

[Lanakay in reply to Soraya_PMR]

Thank you, Soraya. I won’t hold my breath for an apology from either of them. 😃