rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
It has been a long time since I dropped off of this forum. The losses of those I'd grown close to got to be too much for me. I grew to feel overwhelmed with a kind of "survivor guilt". And, it breaks my heart now to see who has passed, without me knowing.
However, it was good and much needed for me to take a break. I do not know yet if I will be able to become as involved as I once was.
For those who remember me (as well as those that don't) I was originally told I had bulbar onset of ALS. I did not progress i.e. decline, as anticipated, and the diagnosis has been changed, unofficially, to motor neuron "other".
I'd started a blog on life with a feeding tube (not the one here) a couple of years back, but did not tend to it at all. I have made the decision to keep it active, and make it a viable place for those who want more information, to be able find it all in one place
Much of the content are links that will direct the reader to a resource better than me, particularly when it comes to making blended tube food. I do it, but there is so much more wisdom out there than I would be able to explain.
The intent, when the blog was first started, was for it to be aimed primarily toward women, That has not happened yet, and may not happen. (however, it made for a cool website name IMO)
I am working hard at getting as much good content into it as I can, and feel it has reached the point to where I want to steer the folks on this forum to it. It is not complete, but at least there is "stuff" to read. Good stuff.
The name of the blog (it is probably already listed in the tube feeding section of the forum, from when I initially began it) is:
tube chic . com
-without spaces, of course
So, hello again to the good friends I have here, and, hello, its nice to meet you, to those I have not had the opportunity to get to know.
However, it was good and much needed for me to take a break. I do not know yet if I will be able to become as involved as I once was.
For those who remember me (as well as those that don't) I was originally told I had bulbar onset of ALS. I did not progress i.e. decline, as anticipated, and the diagnosis has been changed, unofficially, to motor neuron "other".
I'd started a blog on life with a feeding tube (not the one here) a couple of years back, but did not tend to it at all. I have made the decision to keep it active, and make it a viable place for those who want more information, to be able find it all in one place
Much of the content are links that will direct the reader to a resource better than me, particularly when it comes to making blended tube food. I do it, but there is so much more wisdom out there than I would be able to explain.
The intent, when the blog was first started, was for it to be aimed primarily toward women, That has not happened yet, and may not happen. (however, it made for a cool website name IMO)
I am working hard at getting as much good content into it as I can, and feel it has reached the point to where I want to steer the folks on this forum to it. It is not complete, but at least there is "stuff" to read. Good stuff.
The name of the blog (it is probably already listed in the tube feeding section of the forum, from when I initially began it) is:
tube chic . com
-without spaces, of course
So, hello again to the good friends I have here, and, hello, its nice to meet you, to those I have not had the opportunity to get to know.
