I am trying to figure out what the major purpose for this site is and would really enjoy your thoughts. I can tell you what made me want to come here, enough so that I would pay the membership, is that I am rather lonely (even though I'm busy) and would like to discuss some things with people that understand. Being new to the world of ostomates, I would like to hear from vetrans AND newbies about lessons learned, ideas, remedies and good old coping mechanisims. I'm retired so it's easier for me to check in anytime night and day.
In your opinion; is this site more about looking for a perfect "match" or a safe place to openly discuss what happens in our day-to-day life having to deal with the nuances in order to navigate the world with our new best friend. Personally, I took the advice of one of my favorite ostomy nurses to name my stoma... making it my friend, rather than foe. I named it Roo... as in kangaROO because I now have my very own pouch!
Of course, I'm a newbie so any advice I might come up with is based on my own research and personal experiences. I respect there are differences based on the type of ostomy we have and I would like to understand them more.
* Do you have a local support group? If so, do you find it helpful and how so? If not, would you consider creating one? I'm incredibly humbled when I am reminded that years ago ostomates had to figure everything on their own... it's crazy!
* Do you have access to visiting home healthcare nurses? After discharge do you have access to octomy/wound care nurses through your hospitals or clinics?
* Are you intimidated by all the choices available? For me, it's like being overwhelmed in the cereal isle at the grocery store... too many choices!!
* Do you have an emotional support system? I'm curious when I see profiles that state "divorced" or "separated"... what part has your ostomy played in your marital status?? I know I struggle because I feel like my spouse really doesn't want to try to underrstand how I feel. He certainly doesn't believe that I'm exhausted and that my self-esteem is shattered by his comments and judgement.
* What kind of access to supplies do you have and what are the differences based on insurance coverage, state laws and/or country of origin?
* I know that the diseases that bring us to ostomies certainly doesn't discriminate by age, race, gender, marital status or location. In your opinion, does it play a part in recovery or access to proper care?
* I'm not sure what roll "membership" to this site plays in communication but I'm beginning to feel a bit rejected when I try to initiate a conversation in "General Chat". I know going private is certainly easier but I really don't have nerve to ask for a private chat. Again, is it primarily because most people are wanting romantic relationships?
SO, what do you think???