Physical therapy this morning, Thoughts.

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Got back to see my physical therapist this morning after being away for Thanksgiving. She agreed with what I had to say about how things are going and where they are heading. The fact is that muscles and nerves are not working and have not worked so there is not much that she can see changes. I brought up a few things that I feel that I am going to have to say to my general surgeon when I see him next week and I also asked her what her thoughts are on how I should handle certain things my surgeon could say.

I fact is that I am not doing well with things and there is going to have to be something done. I feel that if my doctors do not have answers this time then I will be pushing the issues and letting my frustrations be known.

I have spasms, and my stoma for my ostomy hurts all the time. I get tired very easily and cannot function the way I did. The fact is that if doctors do not have anything to do, try then I will be seeking another opinion. I have read enough to know that the full surgery to remove the problem areas would/is the main treatment used but only for female patients or those that are not as mobile as I am now. The worst thing is that I am already at 1/10 of the ability I had before I moved here to PA so I do not know that saying that "X" surgery should not be done because it could have "Y" side effects due to how bad things are now.

It sucks when I think about everything but this is a fight I am going to win when it comes to getting the care that I think I need regardless of the X factors. I want the spasms gone and my stoma to stop hurting all the time. Whatever has to be done to get there is what needs to happen.

 

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DEAR FLA GUY,
I JUST WANT YOU TO KNOW THAT SOMEONE HEARS YOU AND CAN RELATE.
I AM 78 Y.O. AND STARTED TO EXPERIENCE BLADDER LEAKS A COUPLE OF YEARS AGO. NOW IT IS NEARLY IMPOSSIBLE FOR ME TO CONSIDER TRAVELING.
I HAVE TO CATHETERIZE MYSELF AT LEAST 4 TIMES A DAY IN ORDER TO FULLY EMPTY MY BLADDER. IF I SNEEZE OR COUGH I LEAK AND MY BLADDER ONLY SIGNALS THAT IT IS ABOUT TO LET GO ABOUT 20 SECONDS BEFORE IT STARTS. GETTING UP AND WALKING SIGNAL TO THE BLADDER "GO AHEAD, DO YOUR THING".
I HAVE STARTED PELVIC FLOOR THERAPY ABOUT 2 MONTHS AGO. THE THERAPIST HAS HELPED ME WITH MY BOWEL EMPTYING BUT NOT THE BLADDER. SHE IS TRYING AND SEEMS CONVINCED THAT IF I DO EVERYTHING I'M SUPPOSED TO DO I CAN REGAIN SOME OF MY CONTROL OVER THE BLADDER. MY UROLOGISTS HAVE TOLD ME THIS IS THE RESULT OF NERVE DAMAGE (I HAVE A DIAGNOSIS OF CIDP) AND THAT THERE IS NOTHING THAT KEGELS CAN DO TO IMPROVE THOSE MUSCLES. I AM DISCOURAGED BUT I AM NOT GIVING UP.
I HAVE TO STOP PELVIC FLOOR THERAPY BECAUSE I NEED PHYSICAL THEAPY TO HELP STRENGTHEN THE REST OF MY BODY.
I AM REALLY TIRED OF TRYING AND SEEING FEW POSITIVE SIGNS OF IMPROVEMENT - NONE IN THE BLADDER INCONTINENCE AREA. I LIVE NEAR HOUSTON AND ITS WONDERFUL MEDICAL FACILITIES BUT I FIND IT VERY HARD TO FIND DOCTORS WITH ANYTHING MORE THAN THE USUAL TRAINING OR SKILLS.
I HOPE YOU WILL HANG IN THERE. KEEP FIGHTING FOR MORE.AND BEST WISHES FOR THE SEASON. CATHY

 

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Cathy and FLGuy, sorry about your struggles. I’m mostly stable with the incontinence but everything else has gone to hell! This last week’s challenge has been dangerously low blood sugars. That has never been an issue before. They’ve been anywhere from 40 to 60 most days (ideal is 70 to 120). It’s been inexplicable. It seems regardless of what I eat before bed, my blood sugars are tanking overnight. The good news is that I have severe difficultly sleeping if it’s low, so I’m not likely to go into a coma… MD on Wednesday, hoping for some information.

 

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@LeeC Best wishes that you can get some answered and help come Wednesday.