Frustrated

CheeseQueen57 said:

Have to laugh not cry

So I’m slumbering in my relatively new bed (thank God my husband is at the shore) when I feel wet. I’m like “what the hell?”  I jump (well sort out of) out of bed and urine is pouring out of my pee bag. Some how the little valve to empty it had got turned in my sleep. Meanwhile pee is pouring on the floor and the bed and me are soaked. It’s 3:00 in the morning. I clean the floor, rip the sheets and heated mattress pad off my new mattress and thank God it didn’t stain my mattress. But full clothes change and stuff in the washer. I think I’ll spend the rest of the night on the couch. Nobody told me this could happen! Ah, the trials of a pee bag. I’ll keep you posted. I see the endo today. Curiious his advice on how to control diabetes and the desperate hunger of the Megace. Onward and upward ladies. 

The good times just keep on rolling, don't they? Dear god, you'd think they could give you some warning or instructions or SOMETHING - like maybe slapping duct tape over the valve when you go to bed? Or putting the whole thing in a larger ziploc and zipping it right up to the edge of the tube? I'm continually amazed at how little patient education takes place these days, it seems like we're just turned out into the world with our treatments/appliances/prescriptions/surgeries/whatever and left to bumble our way along. I know I'm an old fart, but really, truly...I DO remember when things were better organized !  Hugs and dry nights to you, dear Cheese !!!

CheeseQueen57 said:

The hits just keep on coming

So now the valve on my bag keeps getting plugged with little clots because of course my urine is still the color of Hawaiian Punch because of all the trauma. So this is another challenge. I’ve tried to get an extra bag but apparently this is a newer one and none of the medical supply stores here have it. Of course, I was told I can drive up to Hackensack to pick up an extra bag. Why didn’t they give me one?  Of course they won’t mail one to me. And Medicare won’t cover the cost (about $30) of this particular bag even if I could find one. Of course I have the option of buying a box of 5 from the manufacturer. 

So I thought this would happen, my endo put me on insulin. Just another thing, huh. I’m not terribly uncomfortable since I worked for an insulin company for 10 years but it’s not what I wanted at this point. And it goes on....

Really, that is just ridiculous. Totally BS ridiculous. Hope you get it sorted out and have a dry night. My incontinence (which is better (at least I am not peeing on myself as much involuntarily)) has been a challenge. My kingdom for not peeing on myself. Cheese, hope things get better! 

xoxo

Denise 

Cheese

Does your endo know you are on Megace? I was answering another question on the board and thought of this.. "Megace may interact with insulin or oral diabetes medicine and may decrease the effects of these medications, and blood sugar levels may increase. If you have diabetes, monitor blood sugar and talk to your doctor if you notice unusual changes. Megace may interact with indinavir, or insulin or oral diabetes medications."

Holy ole moley!! Job (and his patience) have nothing on you. I think I would have gone nuts by now!! I am constantly amazed at how we are sent home to take care of ourselves when a few years ago an RN would have taken care of us IN a hospital. I remember being sent home from the hospital 23 hours after my gall bladder surgery. Within a few hours, I had a temp of 103. Headed back to the ER and 16 days later I was finally discharged. Next will be do-it-yourself surgery!! Here's a scalpel, here's some anesthetic, here's a chart of approximately where your uterus is; take it all and head to the backseat of your car. Call us if you need help!

Our healthcare system is broken and we are the pieces - all shattered and damaged beyond repair. I can only hope that the doctors, nurses, other medical personnel and the people at the insurance companies who make these determinations are someday, put in the same position we have been put in! Karma is a b*tch!

Hopefully, the insulin will work to bring down your A1c. 

Love,

Eldri

CheeseQueen57 said:

Stent

i needed a stent because I have a blockage in my right ureter. We think it’s from scar tissue from radiation but you’re never quite sure. That’s what started this whole chain of events. 

Hi cheese

are you able to have your ureter reimplantEd into your bladder?   I too had a blockage due to HDR brachy but mine was on my left side.  I got a stent which needed to be changed every 3 months.  I got tired of getting X-rays and going under anesthesia every 3 months. I did that for about a year and a half.  My urologist suggested the ureter reimplantment which I did.  Just wondering if that is something avs to you?

wishing you all the best

kathy 

CheeseQueen57 said:

Megace

SF73, yes doc knows I’m on Megace. In fact, it’s megace that probably got me in this stinky diabetes mess. 

Hi CQ,

Ugh!!! Sending cyber hugs! Gosh the things we put up with hey!!! Yes, megace made me so hungry and I put on pounds while on that drug! Hope your days get better. One day at a time and we all keep moving forward. 

I ended up in the hosp for fluids and to sort out my electrolytes!! Gosh I hate being in the hospital especially being an RN. Ugh!!! my veins are terrible so they had to access the port so you can imagine I was freaking the poor nurse out making sure she did sterile technique....but sometimes we just have to be our own advocate. Even the radiologist during the CT scan ...I told needed to "scrub my hub' for 5 minutes before he connected the contrast.... and I didn't care...I don't need any more complications thank you very much!!! 

So CQ you go girl.... get the stuff you need to make life easier. Sending hugs xoxoxo