Hi Charlotte,
Not sure if you've ever heard of this, but our conversation reminded me of 'the spoon theory'!
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
I recently found out what it was. I kept hearing about people's spoons on another support group and didn't know what it was, It's such a good way to explain things. Which reminds me, the Neurologist told me just to pace myself, that was basically his answer. How are you today? I had so much pain in the night, dragging today. Studying so I can quit being a CNA trying to become a CMA if I can' keep working. I'm already going from 4 days a week to 3 days. Here's a nice support group on facebook if you want to check it out, I'm really liking it.https://www.facebook.com/groups/myositissupport/1429396990641950/?notif_t=group_comment_reply
Hope you have a good day
Charlotte, I don't know how I missed this FB group, I thought I joined every single one when I got sick.
I was a CNA a long time ago, didn't last long. I takes a special kind of person, and you're doing it right now?? That's something.
Hi Charlotte!
I'm so sorry for what you're going through. Totally sucks!
The diagnosis process is so hard. I was diagnosed with DM a few years ago, which was a major moment for me, but I am still getting used to the crazy. I have been developing some new symptoms which just brings you right back to the initial fear of the unknown just like in the beginning of it all. Wouldn't wish it on my worst enemy.
I told Nichole when we first met that there are days when I am totally "Drinking the Kool-Aid" and waving my myositis flag high and proud and then there are other days when I just want to pretend like it never happened and crawl into my little hole.
Know that we're here for you and send lots of air-hugs!
I totally missed that FB group, too! I'm there now :-)
Have a great night girls! TGIF!
M
That is such demanding work, all facilities seem to be grossly understaffed, and these wonderful people are run ragged! My granddaughter is a CNA, and my other granddaughter is getting through her required credits to get to nursing school! They came and spent the day again! I'm always thrilled to have them, that is why I went to the grocery store at 10:00 last night in the rain! To get the requested foods they were craving! ha!
Nichole Smith said:
Charlotte, I don't know how I missed this FB group, I thought I joined every single one when I got sick.
I was a CNA a long time ago, didn't last long. I takes a special kind of person, and you're doing it right now?? That's something.
You're so good to your grandkids SK! No wonder they love coming to see you!! I wanna come visit, you are too sweet.
.
SK said:
That is such demanding work, all facilities seem to be grossly understaffed, and these wonderful people are run ragged! My granddaughter is a CNA, and my other granddaughter is getting through her required credits to get to nursing school! They came and spent the day again! I'm always thrilled to have them, that is why I went to the grocery store at 10:00 last night in the rain! To get the requested foods they were craving! ha!
Nichole Smith said:Charlotte, I don't know how I missed this FB group, I thought I joined every single one when I got sick.
I was a CNA a long time ago, didn't last long. I takes a special kind of person, and you're doing it right now?? That's something.
Hi ladies, thanks for the messages, it's nice to hear from you's. just got home from work, I'm wiped out, i will probably be in pain all night long. I do 4 days a week but was suppose to go to 3 days a week on the next schedule, but he must of forgot cause he didn't do it, it's getting harder and harder to do 4 esp. when he puts them in a row. Lol sk, that's what us grandmas are for, spoiling them.Yeah, so far I like that support group, I joined another on fb but its not the same.A bit sad tonight, found one of my residents passed away tonight. Hardest is seeing his wife, so sad. But he's at peace now. Come home and my doggies gave me a lot of loving.sorry Maren that you're having new symptoms, hope they find out what they are.I work the 2-10 pm shift, just got home so need to eat something, usually a bowl of cereal. Im starting to try going gluten free to see if it helps my gut, the cereals I bought are pretty good so far. Have a good night, I hope you sleep well.
Hi Charlotte!
Glad to hear you made it through another shift! I cannot imagine how you still do it, I guess because you have to! I did it until I was bed bound for 6 months, I just did not want to give up!
You know, I think this is a pretty good group here! Nichole and Maren have generously put their heart and soul here and helped a lot of great people!
I hope you sleep well!
So nice to talk to you!
SK
Oh, i'm seeing that, I am new at this and joined a couple groups to try to understand all I can about Polymyositis and the treatments and what others go through and so, I meant no disrespect, I just got on this one and am liking it too. Everyone is so nice. I am just amazed what some go through between all the symptoms and then some of the treatments are about as bad. My Neurologist called mine "mild" and I was shocked, cause I've suffered for so many years and have had so many different symptoms and pain. but when I got on these groups I have seen my problem is mild compared to what many others are going through! I'm sorry if I worded it not so well, think my brain is fried from such a long day. Night
Oh no, I did not mean that as a slam to you, Charlotte! Not at all! This djsease is so rare, so hard to dx and treat, you have to find out all you can, any way you can!
Mild huh, well that must have knocked the wind out of you!
I know the pain I went through before the x-rays and MRIs would even show anything significant, but so much is involved in systemic autoimmune! Then you blink and it's moderate to severe, UGH! One Dr calls at 9:30 at night telling me I need surgery right away, Rheum says No, not yet, Chiro says he can see both sides! ha! So here I am in pain, in limbo!
We walk a tough road, my friend!
Thanks, rough road indeed. I'll have several nights in bad pain, then finally will have a night where I sleep. i keep having to take 5 hr. energy to get anything done the next day.My lower back is killing me right now. i pick up the prescription he gave me tomorrow. I don't remember what he called it, I just hope it helps. then try again Mon. to get ahold of the Rheum. Hope you sleep well
The work you do doesn't do your back any good! My Mom is still mending from a broken hip, I know how they had to lift her in the hospital and nursing home! Whew! I'll tell you, you're never paid enough!
Hope the script does the trick for you!
I think I'm about ready to go drop myself!
Sleep tight!
The doctors aren't in your body feeling what you're feeling Charlotte. It's so frustrating. I go to my Rheumy here and he does his quick "strength" test on me with a "good, good, you're at normal strength." Say what?? I can't walk up a flight of stairs without puling myself up with the railing? Yet I go to his partner at UofM, he does the same strength test plus a bunch of others and says my strength is not 100% at all!
Only we know how WE feel, so I definitely make a point to get that out at every appointment. If I"m in pain, weak, found a new rash on my butt (I just threw that one in to make you laugh), I let him know.
I hope your boss adjusts your schedule next time. And I hope your pain gets better,
Thanks Nicole, years ago when I kept getting rashes I actually had one on my butt! A big round red circle that burned like I was getting on my upper body. lol. Well, I have to talk to him, the new schedule is out and it doesn't have me working 3 days a week, like he totally forgot.
You know, I've heard some of the DM patients complain of painful rashes on their bums, I haven't gotten any there (knock on wood). Just some in other areas.
Charlotte said:
Thanks Nicole, years ago when I kept getting rashes I actually had one on my butt! A big round red circle that burned like I was getting on my upper body. lol. Well, I have to talk to him, the new schedule is out and it doesn't have me working 3 days a week, like he totally forgot.