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Miscellaneous Forum Stuff
Hi, Kids! There are some things I want to mention.
Make sure all of you have noticed the changes to your "Profile." You can chose a color theme for it by clicking on the cogwheels on the upper right. New changes are coming that will be a lot of fun.
For any of you that are committed forum members please add your welcomes to the first Welcome Thread. this should be from all of us!
I really think this is the finest forum that could ever grow itself in a home such as MedHelp. All of you dive in to greet people, make them feel at home and add support. I read wonderment and tears in the voices of people who join and realize they are not alone anymore. This is such a miracle of the human heart. We get the nourishment we need and, in turn, you give more than you could ever get. I am so proud to be a part of you!
The Health Pages are getting an organizational makeover. There is a final part that will make it better, but I want all of you to check out the Page called "MS information and Resource Index." Eventually this will be the page you go immediately to when you click on "Health Pages." Here people will be able to zero in on the exact information they want. And when you are on a specific HP you can click to go back directly to the Index Outline. I am still working with MedHelp to get ALL of the topics you and I have written up placed properly in the outline.
My new kitten came named Lizzie. But she has so much gas we are calling her Fizzie. I'll get pix up.
I am going to work with MedHelp to develop a "Symptom Tracker." This will alow us to visualize the symptoms that come and stay and the symptoms that appear and resolve.
I am also considering a Diagnosis Tracker, that would allow us to document our symptoms, our positive exam finding, the results of the differnent tests and provisional diagnoses we are given, in a linear fashion. This would also be useful (if we can do it) for seeing at a glance what kind of data is available to take us toward diagnosis.
Any ideas on these possible trackers or others?
We need a volunteer to put together a "Common Acronyms for Multiple Sclerosis."
Well, I had a whole bunch of things to say, but my TB (Teflon Brain) kicked in and they're gone.
I love you all!
Den Mother, Quix
Make sure all of you have noticed the changes to your "Profile." You can chose a color theme for it by clicking on the cogwheels on the upper right. New changes are coming that will be a lot of fun.
For any of you that are committed forum members please add your welcomes to the first Welcome Thread. this should be from all of us!
I really think this is the finest forum that could ever grow itself in a home such as MedHelp. All of you dive in to greet people, make them feel at home and add support. I read wonderment and tears in the voices of people who join and realize they are not alone anymore. This is such a miracle of the human heart. We get the nourishment we need and, in turn, you give more than you could ever get. I am so proud to be a part of you!
The Health Pages are getting an organizational makeover. There is a final part that will make it better, but I want all of you to check out the Page called "MS information and Resource Index." Eventually this will be the page you go immediately to when you click on "Health Pages." Here people will be able to zero in on the exact information they want. And when you are on a specific HP you can click to go back directly to the Index Outline. I am still working with MedHelp to get ALL of the topics you and I have written up placed properly in the outline.
My new kitten came named Lizzie. But she has so much gas we are calling her Fizzie. I'll get pix up.
I am going to work with MedHelp to develop a "Symptom Tracker." This will alow us to visualize the symptoms that come and stay and the symptoms that appear and resolve.
I am also considering a Diagnosis Tracker, that would allow us to document our symptoms, our positive exam finding, the results of the differnent tests and provisional diagnoses we are given, in a linear fashion. This would also be useful (if we can do it) for seeing at a glance what kind of data is available to take us toward diagnosis.
Any ideas on these possible trackers or others?
We need a volunteer to put together a "Common Acronyms for Multiple Sclerosis."
Well, I had a whole bunch of things to say, but my TB (Teflon Brain) kicked in and they're gone.
I love you all!
Den Mother, Quix
Sounds like a bunch of awesome ideas for an 'upgrade'. I'm especially interested in the symptom tracker and the signature line ideas, but really, they all sound worthwhile. My favorite part of this string is still the kitten announcement - "FIZZIE" for a gassy kitty just cracked me up and made my morning - thanks for that!
Have a sparkling day!
-Jennie,dx'd 8/08,copaxone
Have a sparkling day!
-Jennie,dx'd 8/08,copaxone
This is the greatest site... I love the new ideas like the Symptom Tracker, Thank you for working so hard for all of us...
Hope you have a lovefilled day...
Hope you have a lovefilled day...
That's a great idea. We suggest it over and over, but I always forget to do it.
so,
Virtual calendar or sticky week reminder thread
Symptom tracker, maybe with color changes to indicate worsening and improvment
Signature line
Diagnosis tracker
Ability to embed comments or journal pages into tracker
Health Page devoted to a patients rights to their information and how to go about getting that imformation most efficiently
Acronyms for MS - Yes, will someone start that thread and as we all think of ones we can add them.
Dietary adjustment for Fizzie
I would also like the ability to move through the pages of threads (at the bottom) in more than 5 page increments. Going back to things that happened just 4 months ago takes forever. Maybe a first or last option and a month option.. Heck! We go through two pages a day sometimes.
Keep the ideas or things you've wanted coming. I am sumitting them directly to MedHelp.
Quix - Dx'd 03/07, on Avonex
so,
Virtual calendar or sticky week reminder thread
Symptom tracker, maybe with color changes to indicate worsening and improvment
Signature line
Diagnosis tracker
Ability to embed comments or journal pages into tracker
Health Page devoted to a patients rights to their information and how to go about getting that imformation most efficiently
Acronyms for MS - Yes, will someone start that thread and as we all think of ones we can add them.
Dietary adjustment for Fizzie
I would also like the ability to move through the pages of threads (at the bottom) in more than 5 page increments. Going back to things that happened just 4 months ago takes forever. Maybe a first or last option and a month option.. Heck! We go through two pages a day sometimes.
Keep the ideas or things you've wanted coming. I am sumitting them directly to MedHelp.
Quix - Dx'd 03/07, on Avonex
I have a request. I do not know if this is a big deal for anyone else but I have thought it would be nice if there was a way we could have a signature line that posts automatically with our posts to each other.
That way we could put in our signature if we are dx'd or not. What we are dx'd with and if we are on DMD's or not. I'd find that helpful when reading posts.
LA
That way we could put in our signature if we are dx'd or not. What we are dx'd with and if we are on DMD's or not. I'd find that helpful when reading posts.
LA
I went to lunch with a friend a while ago and was talking about my frustration with not being able to really track my symptoms over time since they always seem so subjective, change gradually, and seem subject to so many other influences like how tired I am, my mood, what I've been doing, the weather, the alignment of the planets, etc., etc.
I keep a journal off and on, mostly not about MS and symptoms, but when I do write about the MS, I realized that I tended to write mostly things like "legs stiffer today" or "more burning in shins" or "more pressure around ribs" with a "legs feel a bit better" thrown in once in a while. They're all relative and six months later I have no idea exactly what this **** means. I don't remember what it felt like back then. I know I'm worse now than I was six months ago and that's probably true for any given six months, but exactly how much is a lot harder to say.
Anyway, my friend wondered if there might not be some way to more objectively track my symptoms. So far I haven't managed to think of anything, although recently there are somewhat more markers of things I can't do anymore. So if anyone has any ideas about how to more usefully track symptoms, I'd be interested.
sho
I keep a journal off and on, mostly not about MS and symptoms, but when I do write about the MS, I realized that I tended to write mostly things like "legs stiffer today" or "more burning in shins" or "more pressure around ribs" with a "legs feel a bit better" thrown in once in a while. They're all relative and six months later I have no idea exactly what this **** means. I don't remember what it felt like back then. I know I'm worse now than I was six months ago and that's probably true for any given six months, but exactly how much is a lot harder to say.
Anyway, my friend wondered if there might not be some way to more objectively track my symptoms. So far I haven't managed to think of anything, although recently there are somewhat more markers of things I can't do anymore. So if anyone has any ideas about how to more usefully track symptoms, I'd be interested.
sho
I meant to say before that I thought the health record health page would be a good idea and it got away from me (like so much these days :-( ). People would probably feel on firmer ground if they knew what their rights are and had some idea how to navigate the system. Neuro #1's office staff actually managed to insinuate that the only reason I could possibly want my records was if I was planning to sue him for malpractice and otherwise why on earth would I need them. My PCP had them and that was good enough. Maybe Dr. "Hypersensitive Nerves" had reason to worry?
It would be good to have info for other countries, too, if we could get it.
sho
It would be good to have info for other countries, too, if we could get it.
sho
This sounds great!
The Symptom Tracker would be awesome as it would apply to us all. I know I could sure use some help keeping track of mine.
I was thinking lesion tracker at one point, but rethinking it's usefulness now.
I'd be willing to volunteer to assist with the MS acronyms. Maybe we can start a new MS acronym thread, all can contribute to it, and we can cut and paste from there once it starts to shape up.....just a thought.
Wonkster.....you bring up a good point w/imbedding into a posts. That would be very useful! Glad you've gotten the tracker logistics down. I've not had a chance to try one out even.
Have a nice night, peeps!
Shell
The Symptom Tracker would be awesome as it would apply to us all. I know I could sure use some help keeping track of mine.
I was thinking lesion tracker at one point, but rethinking it's usefulness now.
I'd be willing to volunteer to assist with the MS acronyms. Maybe we can start a new MS acronym thread, all can contribute to it, and we can cut and paste from there once it starts to shape up.....just a thought.
Wonkster.....you bring up a good point w/imbedding into a posts. That would be very useful! Glad you've gotten the tracker logistics down. I've not had a chance to try one out even.
Have a nice night, peeps!
Shell
This is great ideas... how about a Timeline Tracker?? guess that the same as symtom tracker...I need one of those BADLY right now...
I'm trying to keep track of my symptoms and do a timeline for the MS specialist...but I'm having a difficult time with remember dates and stuff....
if I can help you with anything...I'll try...
I love this forum...and this family...
thanks
andi
I'm trying to keep track of my symptoms and do a timeline for the MS specialist...but I'm having a difficult time with remember dates and stuff....
if I can help you with anything...I'll try...
I love this forum...and this family...
thanks
andi
Hi Mother Quix!
It's funny, there is very little difference in our ages, and yet, you have 'Mothered' me, and I so appreciate everything you have given me.
I agree with you, this IS the finest forum on the Internet, and I remember that wondrous feeling over the outpouring of love and support I was given, the very day I made my first post.
I don't post often anymore, due to the pain, but to my hearts delight, several members take the time to call me, e-mail me, and stay in touch, make sure I am ok.
Congratulations on your new kitten Fizzie...er, Lizzie. Perhaps a change in diet is on order. :)
Hugs,
Baby Bear Sheila
It's funny, there is very little difference in our ages, and yet, you have 'Mothered' me, and I so appreciate everything you have given me.
I agree with you, this IS the finest forum on the Internet, and I remember that wondrous feeling over the outpouring of love and support I was given, the very day I made my first post.
I don't post often anymore, due to the pain, but to my hearts delight, several members take the time to call me, e-mail me, and stay in touch, make sure I am ok.
Congratulations on your new kitten Fizzie...er, Lizzie. Perhaps a change in diet is on order. :)
Hugs,
Baby Bear Sheila
As a newbie, I just want to take this chance to say you all have an incredible board here already and I thank you for all the hard work all of you do every day to make it a such a welcoming and informative place to visit. This is hard to find nowadays. (and I agree with Fluffysmom...Quix, you've come up with a few genius ideas...makes my mind feel like a lump of mush in comparison! lol)
For someone that has a teflon brain, you sure have alot of great ideas dropping out of it! I love the ideas of the symptom tracker and diagnosis tracker; it would be easy to pop in a symptom as it is occuring, then add it to our timelines later should it stick around and be significant. And the diagnosis; much lighter than the huge notebook I put together with all that information, and would be much easier to navigate.
I will be looking forward to checking out the changes in the Health Pages. I haven't been looking there much lately; not that I feel like I know it all already, Ha ha ha; just that I've been too wrapped up in the pain issues; saps the strength right out of me, and creates some teflon of my own. I went to take a pill yesterday, tried to put the lid from the pill container on my water bottle. Went to put something in the fridge; opened the drawer next to it. You get my drift.
I was wondering about the changing the color at the profile page; noticed others had done it and couldn't figure it out. I'll go play now.
Love ya'
Kathy
I like Sunnytoday's idea, and perhaps people from the UK and Canada can pitch in if they have found ways to navigate those systems to get records more easily and in a timely manner. I helped a friend who worked for a company that fulfilled records requests at various medical offices, and I learned that you have to be very specific. The person gathering the information might use their own discretion if things aren't spelled out clearly. This person was good; if some company didn't want to pay a workman's comp. claim, she would leave out irrelevant prejudicial information, rather than fill all the broad range of information requested. She knows HIPAA inside out, and knew what was legal.
Anyway, Quix-Quix (makes you sound like a fan-dancer), I was wondering which kind of gas you were talking about with Fizzie. The kind where she goes without stop, climbing drapes, people, zooming around the house, or the kind that doni was talking about.
I will be looking forward to checking out the changes in the Health Pages. I haven't been looking there much lately; not that I feel like I know it all already, Ha ha ha; just that I've been too wrapped up in the pain issues; saps the strength right out of me, and creates some teflon of my own. I went to take a pill yesterday, tried to put the lid from the pill container on my water bottle. Went to put something in the fridge; opened the drawer next to it. You get my drift.
I was wondering about the changing the color at the profile page; noticed others had done it and couldn't figure it out. I'll go play now.
Love ya'
Kathy
I like Sunnytoday's idea, and perhaps people from the UK and Canada can pitch in if they have found ways to navigate those systems to get records more easily and in a timely manner. I helped a friend who worked for a company that fulfilled records requests at various medical offices, and I learned that you have to be very specific. The person gathering the information might use their own discretion if things aren't spelled out clearly. This person was good; if some company didn't want to pay a workman's comp. claim, she would leave out irrelevant prejudicial information, rather than fill all the broad range of information requested. She knows HIPAA inside out, and knew what was legal.
Anyway, Quix-Quix (makes you sound like a fan-dancer), I was wondering which kind of gas you were talking about with Fizzie. The kind where she goes without stop, climbing drapes, people, zooming around the house, or the kind that doni was talking about.
Great ideas, quix, as usual! Thank you so much for all your hard work on the health pages, and everyone else who has contributed. They are a big help and when I don't know a specific answer I always send people to them.
Suggestion about Miss Lizzie Fizzy....try to put a little plain yogurt in her food. It works for dogs so I don't think it would hurt her.
Hope everyone is having a wonderful day.
Hugs
doni
Suggestion about Miss Lizzie Fizzy....try to put a little plain yogurt in her food. It works for dogs so I don't think it would hurt her.
Hope everyone is having a wonderful day.
Hugs
doni
addendum:
Another thing about trackers is that you can imbed them into your forum posts.
On this post, I am showing my weight tracker, just as an example.
If there was a symptom/testing/diagnosis tracker, this could be REALLY useful to this forum: instead of needing to re-state your details in each new post, you could show your tracker and ppl could click on it to review your tests, results, symptoms, etc.
It could help Quix, CL's, and members help us, and help us help each other better by having all of that info available.
And no giggling at my weight, please ;-)
Another thing about trackers is that you can imbed them into your forum posts.
On this post, I am showing my weight tracker, just as an example.
If there was a symptom/testing/diagnosis tracker, this could be REALLY useful to this forum: instead of needing to re-state your details in each new post, you could show your tracker and ppl could click on it to review your tests, results, symptoms, etc.
It could help Quix, CL's, and members help us, and help us help each other better by having all of that info available.
And no giggling at my weight, please ;-)
Sunnytoday's suggestion
"Have you ever thougtht about a health page about with a topic smiliar to "how to get your medical records released to you in a timely manner with everything in them that you actually wanted?" "
Is a great idea. It's our info, but I always feel weird asking for records, and then many times when I have made requests, I only get partial info, like 1 page of a 6 page report. I'd love advice on i) how to not sound apologetic or hypervigilent in making the requests, and ii) make sure I get all the info the first time so that I don't need to keep requesting!
I think someone once suggested a symptom tracker, too. This could be part of the tracker Quix suggests for keeping track of tests and provisional diangnoses, etc. All the trackers let you imbed journal entries, so ppl. could at least journal symptoms in another tracker, if I am making any sense.
I use the weight tracker and find it to be a great motivational tool, and also really useful for assessing things over time. I think that it could be a great organizational tool for ppl amidst testing, and again very useful for assessing a situation over time.
Glad to hear about all the neat ideas that are in the hopper. Thanks!
"Have you ever thougtht about a health page about with a topic smiliar to "how to get your medical records released to you in a timely manner with everything in them that you actually wanted?" "
Is a great idea. It's our info, but I always feel weird asking for records, and then many times when I have made requests, I only get partial info, like 1 page of a 6 page report. I'd love advice on i) how to not sound apologetic or hypervigilent in making the requests, and ii) make sure I get all the info the first time so that I don't need to keep requesting!
I think someone once suggested a symptom tracker, too. This could be part of the tracker Quix suggests for keeping track of tests and provisional diangnoses, etc. All the trackers let you imbed journal entries, so ppl. could at least journal symptoms in another tracker, if I am making any sense.
I use the weight tracker and find it to be a great motivational tool, and also really useful for assessing things over time. I think that it could be a great organizational tool for ppl amidst testing, and again very useful for assessing a situation over time.
Glad to hear about all the neat ideas that are in the hopper. Thanks!
Wonderful post, great ideas, I'm all for it! I wish I knew how to work this Medhelp thing better, I love computers, have time and would love to help you set up trackers. Let me know if I can help in any way.
Have you ever thougtht about a health page about with a topic smiliar to "how to get your medical records released to you in a timely manner with everything in them that you actually wanted?" (of course, with a shorter title!) Smile! I work in Health Information, so I could help write this, having worked there, done that, and having just come out of school perhaps this would help someone? I know I learned a LOT that helped me through the last summer navigating release of information, faxes, etc. Let me know if you want this, if not I'm here if anyone posts anything about it! :)
~Sunnytoday~
Have you ever thougtht about a health page about with a topic smiliar to "how to get your medical records released to you in a timely manner with everything in them that you actually wanted?" (of course, with a shorter title!) Smile! I work in Health Information, so I could help write this, having worked there, done that, and having just come out of school perhaps this would help someone? I know I learned a LOT that helped me through the last summer navigating release of information, faxes, etc. Let me know if you want this, if not I'm here if anyone posts anything about it! :)
~Sunnytoday~
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