So, How are You Doing Today ???
I just began this post as a way for everyone to share and reply to one of the most often missed questions of the day - " How are You doing today ? " Share your thoughts about how you are feeling today, how meds are affecting you today, twisting, symptoms, pain, etc. Basically How are you Today ???
beka
Open Forum... Talk about anything !!
beka
Open Forum... Talk about anything !!
Tags: appointments, coping, disorder, dystonia, events, experinces, feelings, living, medications, movement
Replies to This Discussion
-
Permalink Reply by beka on -
Scream anyway , Grace. We all need to at times - and think it is not for ice cream.
beka
-
Permalink Reply by beka on
-
Well. it's close to 3 am and all the patients are no longer acting up. The entire weekend we were all wondering if there was a full moon out there or not ??? Full moon +++ Crazy patients !
My DBS incision is still sore, a bit red. When I get home things feel a bit stretched out. So I end up sleeping all day Monday- in a few hours. Still having zip zapping like sensations. Scar tissue must be slow to form and heal...Wasn't this bad the first time around in 2004. Programming has not been successful. We have kept me at low settings- the same ones that I came out of the OR with. We have tried to reset me back to my original settings 3 times- each time ended sleeping for up to 30+++ hours at a time...coma-like state... my mother could NOT wake me up...so simply slept like a log...so unsure of what the next plan or step is for me ???...I seem to be tilting more to the left than right after the OR. So, we shall see what this week brings...other than more Spring-like weather .. Yoo HOO...
beka
-
Permalink Reply by Thorns on -
Beka, Hope you didn't go back to work to soon and or didn't give yourself time to heal, it sounds like something is not right and you should not hesitate to have both the scar and the zapping looked into. Sometimes being a health professional can be bad for ones own health, why would you put yourself through all this and not give yourself a break and really take care of yourself. I've learned over the years sometimes we can be our own worst enemies when it comes to taking care of ourselves as if we don't deserve it, enough of the lecture please be good to yourself Beka and good luck on the programming.
Thorns
-
Permalink Reply by beka on
-
How true you say things - T...Am having the incision checked tomorrow... Spent all day today working on a political campaign- something new for me... www.normansiegel.com .. but did have lot a scar tissue....And LECTURING is good for me...so I thank you for it...
I'm my worst own enemy...nurses always are...
beka
-
Permalink Reply by karen on -
i have been having a really hard time over the last month or so..my "storms" have increased to sometimes 2 a day..when i first started having them i would get a sensation in my fingers that would kind of set off an alarm telling me to get ready cause here they come and i could get my ativan and half a vicodin in me which helped lessen the pain the spasms caused..well no more alarm..it's just BANG!! and i'm twisting and floppying all over the place and very rarely can my husband get my med's in me during one..and i have to wait till they stop..which most have been running anywhere from 10 mins. to a half an hour..and then it some times takes a day or two for the pain in the muscles to ease up to where it's back to it's bearable stage..
i have been working with my pump doctor trying to come up with some different ways to use the pump to hopefully help slow down atleast the amount of "storms" and the severity..and if that weren't enough to try and deal with because of all these "storms" the muscles in my back have decided to give my spine one more curve..which is added even more pain..
so things haven't been going to well here..but instead of crying more here about it i wanted to share this "funny" with you..as my family is big on using humor to relieve stress that dystonia causes physically and mentally..i recieved this from a friend who knew what i had been going thru and thought it might give me a good chuckle and help make my day better..so i'm going to share it with you and hopefully it will help make someone else's day a little brighter!!
The 'Middle Wife' by an Anonymous 2nd grade teacher I've been teaching now for about fifteen years. I have two kids myself, but the best birth story I know is the one I saw in my own second grade classroom a few years back.
When I was a kid, I loved show-and-tell. So I always have a few sessions with my students. It helps them get over shyness and usually, show-and-tell is pretty tame. Kids bring in pet turtles, model airplanes, pictures of fish they catch, stuff like that. And I never, ever place any boundaries or limitations on them. If they want to lug it in to school and talk about it, they're welcome.
Well, one day this little girl, Erica, a very bright, very outgoing kid, takes her turn and waddles up to the front of the class with a pillow stuffed under her sweater. She holds up a snapshot of an infant. 'This is Luke, my baby brother, and I'm going to tell you about his birthday.'
'First, Mom and Dad made him as a symbol of their love, and then Dad put a seed in my Mom's stomach, and Luke grew in there. He ate for nine months through an umbrella cord.' She's standing there with her hands on the pillow, and I'm trying not to laugh and wishing I had my camcorder with me. The kids are watching her in amazement.
'Then, about two Saturdays ago, my Mom starts saying and going, 'Oh, Oh, Oh, Oh!' Erica puts a hand behind her back and groans. 'She walked around the house for, like an hour, 'Oh, oh, oh!' (Now this kid is doing a hysterical duck walk and groaning.) 'My Dad called the middle wife. She delivers babies, but she doesn't have a sign on the car like the Domino's man. They got my Mom to lie down in bed like this.' (Then Erica lies down with her back against the wall.)'And then, pop! My Mom had this bag of water she kept in there in case he got thirsty, and it just blew up and spilled all over the bed, like psshhheew!' (This kid has her legs spread with her little hands mimicking water flowing away. It was too much!) 'Then the middle wife starts saying 'push, push,' and 'breathe,breathe. They started counting, but never even got past ten. Then, all of a sudden, out comes my brother. He was covered in yucky stuff that they all said it was from Mom's play-center(placenta), so there must be a lot of toys inside there. When he got out, the middle wife spanked him for crawling up in there.'
Then Erica stood up, took a big theatrical bow and returned to her seat.
I'm sure I applauded the loudest. Ever since then, when it's show-and-tell day, I bring my camcorder, just in case another ' Middle Wife' comes along.
Live every day as if it is your LAST chance to make someone happy!!!!
ok now i'm off to do the second thing that i do when my dystonia is doing it's thing..turn on my cd player which is loaded with my all time favorite music..and sit here..close my eyes and dream of the days when i could dance!!
take care all!!
karen
--------------------------------------------------------------------------------
A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
-
Permalink Reply by Ellen S on -
I nominate that for the cutest kid story ever!!! As a former pre-school teacher I so can feel the giggles in my chest knowing you tried to keep a straight face thru it all!
-
Permalink Reply by lissamel on -
Okay guys - I have not been in this "arena" long enough to understand all the ins and outs of dystonia and the various forms it takes in our bodies, but I am perplexed after today and feeling like I have lost my mind.
When diagnosed in January I remember the doc telling me I had focal dystonia in my jaw and neck. I researched and tried to read up on everything I could to understand what the doc was telling me. Though now I am feeling at a total loss as to what is going on with me.
In the past two weeks is seems like the dystonia has started affecting my left arm, wrist and hand with my arm curling up around me or sticking out behind my back. And my wrist and hand going stiff in every direction as if the joints can not make up their mind on where they want to go. This does not happen every day, yet seems to act up when doing activities like sweeping and or being still for long periods of time. When it does happen it has reminded me of when I was 10 and had fallen and broke my wrist on both sides - the pain feels similar to my memory and occasionally I have wondered if my wrist was going to snap again.
In the past few days it seems like both my shoulders are getting into the act - jumping about at odd moments, especially my right shoulder. When my face starts acting up it almost seemed like the right side gets pissed and decided my shoulder was the next best thing to jostle about.
Today was the first day I joined in a meeting at work since last October\November which included about 100 or so people packed into a room. I am already claustrophobic yet today it seemed to have escalated beyond measure and I was nervous about my "monster face" expressing itself to everyone in the room as it has been getting worse over the past day or so. Then from the middle of my chest on up, my body started acting like I was doing the YMCA dance, curving left, right, front and back - all over the place and not always in the same direction. Once I got out of their it settle a bit; though I was still in a lot of pain and refused to go home. I stayed at my desk and worked the best I could as I WILL NOT let this take over my life (boss tried to send me home as my neck was resting on my shoulders and left eye kept closing). Once my body calmed down and my face became the main issue - every now and then I would jump a few inches off my chair. I do have a big startle reflex when people walk up behind me or I hear an unexpected noise (part of my sleep apnea according to doc) - though nothing was going on around me today that usually makes me jump so high. I also felt occasionally like my back, shoulders and neck had to move like the waves of the ocean crashing onto the beach - sometimes left, right or upwards.
So my ultimate question is - what in the *^%)* is this? Is this more dystonia spreading to other areas of my body or do I have something else going on with my brain \ body?
I see my nero doc on Monday and will certainly have more questions to ask.
Tonight I am sitting here, on pain med's (can't take too much since I am the only here with the kiddos) mixed with several Tylenol & Advil, feeling sore about my ribs \ shoulder & neck, with my face pulling to the left, a mother of all headaches and wide awake.
Feeling a bit lost and confused ~
Mellissa
-
Permalink Reply by Thorns on
-
Sorry your having what I call a dystonic attack many people with dystonia have these when they are stressed and it does sound like your dystonia has moved to other area's of your body. You can get botox in your facial muscles to releive the pulling but make sure the neuro who does this is experienced. Sometimes we have to motify our lives so we have a good life with our families without extreme pain, it doesn't always mean giving into dystonia but making a life change that will make our lives doiable. One of the things I learned over the many years of having dystonia more then 30 is it's good to learn how to read your body signals and do relaxation techniques, these can sometimes calm the movements and help with pain. Myself Tylenol was useless when it came to muscle pain so I would stick with the Advil and Ice packs and moist heat. Thorns
-
Permalink Reply by lissamel on
-
Thank you for your words of wisdom - I told my boss today I would not be attending anymore meetings until I can get this under some sort of control with (hopefully this coming Monday) botox injections. Maybe I store to much faith in this route but I feel like I have to look somewhere.
I forgot all about the ice pack in the freezer last night and I have to limit myself on the Advil because of the stomach ulcers - though I imagine taking tramadol\4-tylenol\4-advil doesn't help them either :-)
I felt like such a wimp yesterday and probably pushed myself further than I should have.
I am a very strong-willed woman and cannot stand limitations of any kind and every knew storm sets a new high for me. I did not tell my husband about yesterdays attack as he just went on the road again and I hate having him worry about me. He got to see one of my usual attacks on my face a week ago and he finally understand why I cannot talk with him at times on the phone.
Now I am rambling as my thoughts seem to get jumbled about more easily these days with my words getting mixed up - makes a person want to thump themselves on their head and say "i shoud've had a VA" kinda moment.
Thanks to all for reading and dealing with my long winded notes ~
Mellissa
-
Permalink Reply by lissamel on
-
See - my thoughts came out wrong again! I meant "V8", the tomato drink\commercial. And I read my post outloud to myself several times to make sure it makes sense!
Aye, aye, aye :-)
(Thank you though)
Mellissa ~
-
Permalink Reply by Robin Wood on -
Today temps will be into the low 90's here along the colorado river, beautiful spring weather, sure wish I could get out there and fish. Still recouping from the storm I had on Saturday, the arch and twistng in my back is down to a minimum today and my legs are feeling better and better as each day passes as well.
Hasn't been a real good week, but still I take it all in stride with the "so what / who cares" attitude ... 1/2 my elecrtical went out last night in my mobile, to tired and hot to have someone come look at it. I dropped my cell phone in a glass of water ... dahhhh, my sis loaned me hers in case of need and my other sis said that she did the same thing 2 weeks ago and it took about 4 days for it to dry out. It's outside catching rays while I'm hunkered down in doors where it's a bit cooler.
Still trying to piece together all that occured on Saturday, there's a lot of missing time. I think my eyes might have spasmed and closed and that's why I can't remember a lot of what I'm missing. My sis told me that 4 of the fire dept guys carried me out of my mobile out to the girney(?) so as not to change the position I was in, boy do I not remember that ... sucks to miss out on 4 hunks carrying you. I don't remember seeing the doc and my sis says she thinks I just walked out of the ER because I came out all by myself walking sideways even though I was trying to go forward. I think she's wrong though because I had my scripts and I just found the discharge papers in my purse earlier today ... still we wonder why they did not wheel me out in a wheel chair because clearly I had some issues with walking and sustained spasms. Still don't know what they gave me in the ER aside from the benadryl, they wouldn't let my sis in once she got there for awhile which troubles me, she's my voice and knows what they should and should not do .. their reasoning was because they were working on me.
The entire top side of my left hand is massively bruised where they attempted to put the first IV line that I jerked out during the storm. My left arm also has massive bruising where they put the second IV ... don't know why but the hospital also started an IV in my right arm but I think the storming was more calmed down by that point that it didn't bruise like the fire depts did. I don't remember even feeling the IV's being inserted, I do remember telling them they better hold my arm and hold it tight and not to let go till they were finished on the second attempt ... those needle pricks just spike the jerky movements beyond belief.
We had issues with 911 as well, my sis got transfered 3 times before she got the right dispatch and my sis that works at the ambulance company said the call came over as seizure ativity when my sis clearly said 3 different times that I was having a dystonic storm and that my lips were purple. My discharge papers came with instructions for a "dystonic drug reaction" ... which is so lame because I don't even take meds ... yea our hospital leaves a lot to be desired. Thank god we have people, my sis who works with the ambulance co and my other sis's x brother in law is on the fire dept.
The good news out of all of this is that now I should be able to qualify for the state medical, it's over 1,000.00 just for them to show up at my house and my sis said the fire dept will probably be billing me too. Getting the states medical will help me get up to Mohave Valley to the neuro I want to go to because the state of AZ contracts with a taxi service here in our town that will pick me up and drop me off door to door for my apts. And Dr. Bennett is afliated with the medical center up there in Mohave Valley where the occupational therapy is ... he won't be sending me to phoenix like my present neuro always wants everything to be done.
Enough for now, got a big pot of beef stew on the stove that took me two days to make ... I'm starving !!!
Robin
WHY WE HAVE ADS
© 2010 Created by Marie
