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Staff member
With all things considered, Everything is going as good as can be.
I have,
A Patient advocate.
I financial advisor has been in contact with me (Waiting for paperwork for charity forms to get copays paid)
My parents lawyer had his paralegal look over my current situation and made the recommendation to try to get through with my insurance company before trying for SSD.
My Cousin who is a CCRN is reviewing/coordinating my care and following up to make sure things are being done, She also set me up through Patient advocate office with a social worker who will be calling me this week. (She works at the same hospital as my GI doctor, Physical therapist)
I got all my ID's and stuff In PA. Have to wait on car parts to finish my inspection...(The reason my car stayed registered in FL for so long... (Parents have spent almost $700 getting my car fixed to pass) FL has no inspections and my car is old.
I have applied for all the assistance that I can get with Department of Human services (DHS)
I got a lot more answers from my new Physical therapist last visit.
Some very bad news and more testing coming.
What was found is that I also have very little tone/a bad angle in my Puborectalis,
my internal anal sphincter is tight but also lacks tone and is spasmatic,
my external sphincter lacks tone and gets spasmatic which causes it to stay open after a bowel movement.
They found out that I have issues with Recto anal Inhibitory reflex(Anal sampling, Ability of the rectum to discriminate between gaseous, liquid and solid contents)
They are going to do some more test as soon as things arrive.
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I have gotten a lot of advice from people here as well as family. I respect both and take everything in and see what will work best from there. Here is the thing, when I first started physical therapy with the first therapist, the perspective was for just six weeks of therapy because there were things that were not as clear as they are now. Now Even my Therapist does not want me working. There are a lot more things going to be done, test and God forbid more surgery. I was not ready to handle that.
What needs to be said it that I have a very hard time with all of this. I spent a lot of time talking to my cousin about everything going on. Once she pulled my records she made a lot statements about where my care is heading. She even reached out to my care team to let them know that she is watching my care. What they are thinking is that some of the things that are wrong cannot be fixed without more surgery....They are going to try but now that I have a timeline a lot more is going to have to happen due to how long I can be on long term disability through insurance. That timeline would end and then I would be helped to get SSD by that insurance. Sadly that timeline started back in May at the 18 month make they will get me on SSD. They, the Insurance has a disability lawyer for me when it gets to that point.... Already talked to them about what the doctors, Therapist said and given them records. That process is going on while long term is finalizing their review.
So before long everything will come together with what will be done and I have excepted that I am going to be dealing with this for a long time. I hope for no new surgery but I am okay with the idea if it does away with some of the pain.
I have given up on the idea of going back to work anytime soon so surgery will be about quality of life first.
I have,
A Patient advocate.
I financial advisor has been in contact with me (Waiting for paperwork for charity forms to get copays paid)
My parents lawyer had his paralegal look over my current situation and made the recommendation to try to get through with my insurance company before trying for SSD.
My Cousin who is a CCRN is reviewing/coordinating my care and following up to make sure things are being done, She also set me up through Patient advocate office with a social worker who will be calling me this week. (She works at the same hospital as my GI doctor, Physical therapist)
I got all my ID's and stuff In PA. Have to wait on car parts to finish my inspection...(The reason my car stayed registered in FL for so long... (Parents have spent almost $700 getting my car fixed to pass) FL has no inspections and my car is old.
I have applied for all the assistance that I can get with Department of Human services (DHS)
I got a lot more answers from my new Physical therapist last visit.
Some very bad news and more testing coming.
What was found is that I also have very little tone/a bad angle in my Puborectalis,
my internal anal sphincter is tight but also lacks tone and is spasmatic,
my external sphincter lacks tone and gets spasmatic which causes it to stay open after a bowel movement.
They found out that I have issues with Recto anal Inhibitory reflex(Anal sampling, Ability of the rectum to discriminate between gaseous, liquid and solid contents)
They are going to do some more test as soon as things arrive.
.
.
.
.
.
.
.
I have gotten a lot of advice from people here as well as family. I respect both and take everything in and see what will work best from there. Here is the thing, when I first started physical therapy with the first therapist, the perspective was for just six weeks of therapy because there were things that were not as clear as they are now. Now Even my Therapist does not want me working. There are a lot more things going to be done, test and God forbid more surgery. I was not ready to handle that.
What needs to be said it that I have a very hard time with all of this. I spent a lot of time talking to my cousin about everything going on. Once she pulled my records she made a lot statements about where my care is heading. She even reached out to my care team to let them know that she is watching my care. What they are thinking is that some of the things that are wrong cannot be fixed without more surgery....They are going to try but now that I have a timeline a lot more is going to have to happen due to how long I can be on long term disability through insurance. That timeline would end and then I would be helped to get SSD by that insurance. Sadly that timeline started back in May at the 18 month make they will get me on SSD. They, the Insurance has a disability lawyer for me when it gets to that point.... Already talked to them about what the doctors, Therapist said and given them records. That process is going on while long term is finalizing their review.
So before long everything will come together with what will be done and I have excepted that I am going to be dealing with this for a long time. I hope for no new surgery but I am okay with the idea if it does away with some of the pain.
I have given up on the idea of going back to work anytime soon so surgery will be about quality of life first.
