One day at a time, no thanks to doctors (bladder)

[Friedbrain]

<feeling sorry for myself> I am coping-one day at a time- with the latest and newest symptom, lack of sensation in my bladder, by using a timer and going to the bathroom EVERY HOUR.  It bites, but using the timer helps me to walk the line between concern and paranoia.  My biggest concern is causing damage to the bladder and/or kidneys without even knowing it. 

I was experiencing trouble completely emptying my bladder (a sporadically common problem of mine, with onset associated with ovulation), but I could live with that because I could always *feel* when I needed to go again.  Until last week, when I lost sensation down there.  I tried "listening" to my body and if I felt crampy or bloated, I would go.  But then my period started. I don't know about ya'll, but I tend to be generally crampy for days during this time.  At first, the cramps were driving me nuts because I kept thinking I should go to the bathroom, but then finally said STOP because it was too hard to read what was what.  Therefore.....I now have absolutely NO clue as to whether I need to go or not, which is REALLY scary!  So for the entire weekend, I've been using a timer to alert me every hour on the hour to go to the bathroom.  It's tiring but I feel it's the only way I can keep my worries under control.  Since I am not even sure I am emptying (without stretch sensors working), I can't tell if I am empty or still full or what.....but if I know I am going to try again in an hour, I can at least allay those fears somewhat. 

I went to the neuro on Friday and he tested my feet and deemed my lower body's nerves intact and said I needed to talk to my urologist (the guy who said previously that he doesn't know what's going on, and the next step is a whole bunch more invasive tests, with no solution immediately in sight!) 

Me, personally, I just friggin want someone to ok the upsdose of steroids since that's what helped when I was hospitalized and completely unable to urinate (at that time, the urologist consult said it was a NEUROLOGICAL problem.  I KNEW this is what was going to happen because it's been happening for the last ten years.....urologists and neurologists keep sending me to the other one, back and forth, no solutions...argh!)

I *did* start the plaquenil on Saturday, though, yay!  The rheum did say, tho, that if I need treatment for any immediate symptoms, (per a doctor's agreement, not just my gut) I should increase my steroids because of the time needed to see a plaquenil effect.  So......I sit here waiting for my timer to go off and feeling sorry for myself.  Just been one of those Bad Months where there have been a lot of problems and few answers... But I found you guys, so I guess that's been my silver lining! 

[Joe S.]

Diapers, Diapers, and more Diapers. I hate wearing diapers. Some days that is the only way I can live my life and interact with friends and family. This has been an issue since I broke my leg and hip. An "accident" will put me back into diapers. I try to stay clean because I hate wearing diapers. I try to talk to my body to warn me enough in advance so I do not have to wear diapers. I guess that I just have to accept that there have been changes in my body since the fall and now diapers may be another challenge to manage and over come.

[4Kids]

The time in my life when I couldn't tell if I had to pee, had a terribly sore bladder that screamed at me but couldn't empty and start was, truly, one of the worst times in my whole life, almost on par with my mouth and eye suddenly having moisture shut-off over night when the brutal virus hit it and made me go into the worst flare I ever had.

I was anxious, I shook, my heart raced. It was awful.

I have no advice, just hugs. I am so so so sorry, what you are going through is awful, not dignified in anyway, painful, horrible. ((((hugs))))

[iraisin]

I've had a bout with the numb thing and not feeling like I've emptied. Had no idea what it was at the time. It subsided after a coupld of months - thank goodness.

I sure do hope you get some relief. So sorry you're going thru this.

[gurs]

I can relate..going through this right now. Last few days very hard. Cant get the muscles to work right in my bladder and bowels. They
are numb as well. Tummy is bloated like im holding too much urine...gained a few pounds in the last 6 months while this started. Kidneys seem
to be working ok..had a CT scan done and nothing major showed. Im on 20mg a day of steriods and that doesnt help. Gyno thinks it
all estrogen related and said vaginal estrogen can help like 99%. BUT, could also be our SS CNS issues....ive been flaring so bad last few days..face is so swollen and puffy..allergies...ughhhhh...

I hear you about the pain.....its horrible. See a URO and have some tests done. If all comes back ok, then you can pretty much guess
its the Sjogrens? 

Maybe the plaquenil will help?

Gursie

[new2sjs2012]

Here is my solution to the bladder....  genesispure.com/product/goyin.php    I though I had interstitial cystitis, but as long as I take one ounce of this morning and night, it is all better.

BUT.... a less expensive way to get some relief is Garlic Tablets.  Before my friends told me I must have the cystitis like they did, I always thought it was a urinary tract infection as a single mom with no insurance I needed a cheap treatment.  I called my friend who was into that stuff and she told me to take 4-6 tablets every 4- 6  hours just like you would an antibiotic.  Garlic is a natural antibiotic. 

Blessings to you.