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SassyBetsy

Pain Support Group

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I am going to pain support group on mondays soon.

 

I am excited.

 

It will not be people who have had strokes.

 

I will be with Normies.

Wonder how that will go.......

 

But looking forward to hearing about how others live with pain.......

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That sounds interesting, keep us updated.

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nope I am not going:pounding-headache:because my transport co needs 3 days notice.

and this is 2 days businwss days.

 

so the next week i have appt.

 

ok so i left a messsge and asked if i can do another group.....they have them on diff days and locations. no one answers the phone. i never received flyer in mail. they do not email.  

 

?????

 

so ball is in their court.

but thos is second time i missing out so i am calling somebody.

 

but i just cried about something......i talk to the insurance people who mucking up stuff and they keep telling me I have another insurance and i do not.......they have another insurance for me....wrong...

 

i say....why can't you accept and believe what I am saying so you will call verify fix this??and i hurt to my soul teared up like my dog died and here we go again.

 

a disappointing day.....

 

but earlier i felt happy sooooooooo happy cuz son gave me stuff visit. and......

 

then i get soooo boggged down with medical stuff.

all morning calls.

appointment setting.transport arranging.....

call dr office....they called yesterday

 

this is a full time job.i need secretary.

Nooooooo. I can let them do some here at SNF but blimy nothing would happen or it would be a sham.

All I want from them is to get a shower b4 i go......and that is hard....

 

but this am i got up early in pain from dry eyes. I call nurse ask for ointment. It was discontinued thrown away. I said Nooooooooooooooooo.oh no. That is a thing I should do fairly often to heal eyeballs from dryness and protect at night....but ............now need start over..... But Then the nurse came back to give me pain pill....i was up still and she said are you going out....i said no or i would ask you to fix my drugs to go....and she said Oh you not up early usually. WTF. I vary on my sleep schedule. I am fragile. I got upset cried.....like they literally add insult to injury!

 

ah so as I write this 2 people popped in to give communion. I wish it was priest but special ambassadors do it.  So they are new. as in this is first day ever. So I try to smile. They are a couple. They jump in.no small talk. no reading?or short something then ok then done.....

I thank her and tell her it was as if she has been doing it forever. Truly smooth. But she is nervous and says she needed to hear that. Smile smile smile. I kinda really miss the ladies I have grown to love but these are nice people and I want to be friends.

 

Then she said she hoped I felt better soon and could go home soon. The man jumps in and says you look good. I must have reacted because he says oh yes you do nodding away.

 

ok I am not dressed and no make up or anything. I did not react because of doubt but that he would comment at all. But I doubt. I know. I do not look recognizable to myself in the mirror. 

 

But then I sobbed. Truly I am broken today. I am not going home. My home does not exist. I gave it away as if I was cleaning away another's life after death. But it is me. I am not dead. 

They do not know I am long term care as they say for folks like me.

I need watching over and help. 

I am ok. grateful. 

 

I know they meant kindness. I could feel their loving kindness in the way they soo wanted to do it right and help in a way.

But I am a volatile spirit ready to dissolve.

 

What was this thread anyway? I honestly forgot:minding-business:

 

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Pam, i love you! :hug: I just needed to tell you. I so much understand your frustrations but you have just made me laugh out loud. Heck I even went back to the top because I didn't remember what the thread was about either. Hang in there my friend.

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 I am crying with you.  That was so eloquent and beautiful and sad.

 

My heart goes out to you.

 

      paul

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Pam...did you get to your support group?

You beautiful thing you.

Love ya guts.

:hug:

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No,it is closed for the 8 weeks, meaning same people continue

..but I can do another group later...if they give me notice.

 

But I do go to an open stroke support group. No about pain but we talk about things. it is not like  being taught...but guests come. 

 

I go once per ?month. nice but not enough. but nice in person.

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Pam, we are fortunate enough to have a monthly meeting too, although it's for all neurological disorders, not just stroke.

I don't go every month...it's early!! 

I do enjoy it when I do go.

 

We have a new neuro nurse,  and they've asked me to see her, instead of the nurse I've been seeing for 4.5 years.

 

Not sure if I want to switch...

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Janelle while changing can be hard and you feel like it's a major step back having to bring a new person up to speed they may have a new/different approach and it might be better.  Try to be open to the new experience.

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Oops,our group is for TBI,Etc...some had brain tumors....I call it stroke support because it once was that and neurological injury group is long....lol,excuse my not being all inclusive.

 

Maybe check out new person, ask why the switch, and tell them what you want. It is reasonable to not want to start all over with someone who may not get it, and some of us are complicated and picky about pur providers. But maybe it will be a good thing too. Hopefully you have a choice.

 

I went today, went to PT, then took shuttle bus to bungalow where group meets. Very fun, but tiring. But nice others get me.

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Janelle I do understand your uncertainties about seeing a different nurse especially after 4.5 years. I do agree with the other comments, might be scary but could be very good. A change after 4.5 years could really have possibility to new therapies that lead to better outcomes. I'm with you no matter so if you take the unknown step you have a friend (pretty sure many friends) with you. 😘

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Thank you Heather, Pam and Tracy.

 

You are probably right.  I have met the new lady, and she is nice.

 

With the hospital breathing down my neck at the moment, everything seems too hard.

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Well time to do nothing is ok too.

you are the boss of you.

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Janelle, I understand not wanting to change.  Having an established routine is nice because you know what to expect, and the people you interact with know what you want from them.  Life's just flowing along, you can go with it, things are easy.  But change takes a lot of energy.  You have to explain yourself as you go, and you have to adapt to other people's way of doing things, and that can be overwhelming, especially if you're feeling stresses in other areas of your life as well.  It's even more difficult if the people you're dealing with don't understand what a strain these changes are placing on you, and who wants to spend more time explaining that?

 

I am a person who likes having full-time work where I move from client to client, and with each client, I do something a little bit different.  Staying at one location, doing one job all the time BORES ME TO DEATH!!!  But I do not like change in my routines, especially since the stroke because I am so fatigued all the time.  But I guess none of the changes so far have killed me (though one time came close!), and I have actually benefitted from many of them.  Hang in there, something amazing might be headed your way, disguised as a problem!  You know we are all cheering for you!!

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It is like me and my salad dressing. I love blue cheese and yet if they say I cannot get it them I get Thousand Island which is also good or wait ranch Russian vinaigrette or wait... raspberry vinegrete!!

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Decisions are the worst...

 

When I bump into the neuro nurses in town, we always stop and chat.  I saw one in town the other day and mentioned I was unsure of what to do about the staff change.

 

Before I could say anything else, she said she’d go back to work and make sure I stayed with my original nurse.

 

No decision needed on my behalf.  I actually feel good about that, not having to explain myself and justify my decision. It’s been hard I think because of everything going on with the hospital at the same time.

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Great!!!!

No justification needed when you run into an empathetic soul.

 

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That’s what I love about everyone here, Pam. No justification needed.

 

Sorry, I have just realised I have hijacked your thread.  Only a few more weeks and your support group will be up and running again.

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