Please help us all manage expectations!

[sixcatlawyer]

{MacMac}.

Timely discussion. I’ve been having a fairly abnormal amount of pain front side of my right shoulder, right side of my neck, trapezius, suprapsinatus, basically neck to below the shoulder blades and spinal area. It’s abnormal because while it gets relieved with heat, massage and muscle relaxers, it really doesn’t go away for very long and hasn’t for the last couple of months.

I thought part of it was the neck issue I’m already in PT for. I thought the other part was that I needed another cervical epidural (last one was March of last year). So Friday, we headed over to Pain Management and got the epidural scheduled.

We did all the usual grip my fingers, push me away, don’t let me push you stuff. There’s been some progression in at least my c-spine and likely down into my thoracic. I’m scheduled for an MRI to figure out how much and where. Then I follow-up with Pain Management to look into some targeted injections.

Friday, I wasn’t particularly disappointed at the news. Friday night, it hit with a sleepless night AFTER I broke because of a lousy bowl of popcorn. So yesterday, I cried; Paul and I talked about how I’m not a failure.

Slept twelve hours last night. Today, I’m in BRING IT ON mode. Just like PsA, this crap changes in a hot second.

[Grandma_J]

Thanks, tntlamb. Your explanation, as usual, is so, what’s the word I’m looking for??? Anyway, it’s so “that” !!!
I did have high expectations. People in my family are tough. I was tough. It’s hard to be a wimp–that’s what I feel like. Realistically, though, I’m probably capable of doing a lot more than plenty of people my age–even people healthier than me! I’m not really a wimp–only some days I am. Even on bad days, though, I seem to accomplish “enough” to know it wasn’t a wasted day.
I’ve been trying somewhat to push the “poor me” thoughts away and tell myself that things are not that bad and remember on the bad days there are good days ahead–just like has always been. I think what happens as we age and/or as the disease progresses we (or at least, I) feel anxious about how my life is going to pan out, being I don’t feel as well as I think I should at 63.

@tntlamb

I personally hate the phrase “new normal” While it is helpful in accepting this disease and dealing with it, the fact is everyone everywhere WITHOUT EXCEPTION experiences an an entire life of new normal’s. Sometimes our “plans” match, most time they do not.

That is very good food for thought, and if I (we) can keep it in mind, it’ll be easier to accept the current situation, whatever it is, and try to look on the bright side.

[MacMac]

@sixcatlawyer Yes! Acknowledging the full range of our experience is part of managing, ican be i my best places after a cry and a rest. So sorry for the pain sixcat, but I am glad you found a way to get back to BRING IT ON mode.

[Poo_therapy]

I try very hard to live the day that’s now. When it’s bad it’s pretty crap but when it’s OK or even better then it’s wonderful. I try and leave the crap days behind me and not drag them with me into the next day. But I do try and keep remembering the good days. That’s my ‘expectation’ or ‘plan’. And of course Mr Lamb is correct, sometimes our ‘plans’ match and so often they don’t.

However I do find that when I manage to live the day that’s now, the horrible ones subside faster as they get left behind. That does make things a little better and gives me a more positive frame of mind. Believe it or not!

[janeatiu]

@tntlamb

I personally hate the phrase “new normal” While it is helpful in accepting this disease and dealing with it, the fact is everyone everywhere WITHOUT EXCEPTION experiences an an entire life of new normal’s.

That’s a very Buddhist philosophy. But also a neuroscience one, too.

Neuroscience backs up the Buddhist belief  that “the self” isn’t...

[tntlamb]

Buddhist? Here I was thinking it was thinking of thinking of tomorrow in terms of today. I remember as kid seeing pictures of the future “video phones” They were essentially the regular old desk phones (complete with rotary dialer) and just a TV screen. Whodu thunk it would be a handheld commputer with 100 times the power of the computers we sent man to the moon with… I won’t even try to describe how I saw TV’s that would someday “hang on the wall” like a picture but it was something like this:

[Seenie]

Great TV. Who did that? It looks like the kind of thing my husband would do (over my dead body, I would add).

On the subject of computers, I often look at my phone and contemplate the fact that it’s hundreds of times more powerful than the one computer we had in the school when I started teaching. And that computer took up an entire large room (which needed to be carefully climate controlled.) Incredible really. And now I just walk around with it in my purse (or wonder where the h3ll I left it this time).