Sooooooooo.......here we go again, next chapter. I'd previously mentioned that after thirty-six years of dealing with this monster, I could no longer "feel" when I had to go until it was too late. Since this problem had completely taken over my life with time spent in the bathroom changing (3 hours), the rest of the time worrying about the next episode and the cost of incontinence supplies, the home nurses and I decided on having a foley catheter put in. This was a week ago Thursday. It's really nice staying "dry", but a constant reminder of something else this disease has taken away.

There is a leg bag that I can use under my pants when other people are around plus the regular one for use other times, especially at night. Maybe now I can sign up for van transportation services since I hesitated before due to never knowing when the flood would happen. It would make it so much easier to be able to travel with my power wheelchair instead of trying to transfer to a regular car. Really need to make a couple doctor appointments which are past due.

I'm thinking this will be a good test of how my body reacts to something foreign taking up residence before I pursue getting a supra-pubic catheter put in. Had some bladder spasms Friday......felt like labor pains. Yikes! Hope they don't come back again. Anyway, guess it's a step forward in some ways, but in others I feel like I'm going backward losing some more normal bodily functions.

Then there is the situation with my legs. They remain swollen and "weeping". It's been decided to wrap them with the unna boots again, but this last time the nurse made them so darn tight, I couldn't stand up. Ya know????? So I took the things off the next day. Now of course my slippers become saturated with the draining lymph, with bare feet, the footrests on my chair resemble a ski slope and my heels stick to it so feels like the skin is ripping off when my legs spazzz. Are we having fun yet? Hopefully they'll come up with a different solution next time.

I'm so sick of living with this disease and the constant pain.
Thank you for reading and understanding.

Judy

Isn't there something the doctor can do about the fluid draining from your legs? Seems like there should be some course of action they could take. They seem to think they have an answer for everything else...... I know it must be terribly irritating for you to get one problem taken care of only to have another one need attention. I'm praying for you, Judy, and believe that better days are ahead.

Praying bigtime for you my friend. What a crapola disease this is..

I agree with Kelly, there must be something they can do to stop the leg illness and draining. Sheeze, this is not a 3rd world country!!!!

Love and prayers. always,

Sally

Judy....
I am sorry for ALL you are going through. I just started to needing to self cath. I am wondering if you have ever heard of a flip flow valve? It attaches to the end of the catheter tube, about 10 inches, you can roll it up into your underwear....and every two hours, or whatever works for you, you just go to the bathroom, open the valve over the toilet and empty your bladder. You can attach to a regular bag for overnight.

This is so not a fun disease!!

http://www.westernbiomedical.com.au/...lip-flo-valves

I thank my lucky stars that I am as well as i am with this horrible disease.
Hope you find the strength to overcome this.

Hi Judy

((((((((((((((((((BIG hugs))))))))))))))))))

I hope this new catheter actually helps you to have some more independence and actual freedom.

So sorry about the legs and the spasms.

Lyn

xx

Judy, the quote below is from another MSer (Jeanie)...thought you might try it??

Sally,

That's good advice. Pre-made sterile bandages are being made for wound care centers that are...you guessed it...infused with honey. They are called Medi-Honey. Manukah honey is the best for home use and can help kill bad bacteria inside and out!

Yeaaaaaa, Judy, report in if you try this. Hope it works..

First of all, thank you all so much for your love and concern. I pray the few advances that have been made in fighting this monster will keep yours at bay so you'll never get to this point.

I did research the medi-honey and checked with the home nurses about it. It does work really well on individual sores, but my legs just seem to "weep" from the pores from below my knees down to and including my feet. Some of the places that were originally blisters, look like sores, but alot of the time, they aren't what's leaking. Guess they'd have to wrap my entire lower legs in honey bandages...........ewwwww.......sticky!!! Stay away from the bees!!!! I should go to a wound care center, but that involves the transportation thing again.

Now, on to the catheter.......It was really great until Thursday evening when the bladder spasms took on a life of their own. OMG!!!! Haven't had that much pain since labor pains before they did a C-section, actually three of them. The spasms came in waves and each time it would throw my whole body into spasms, back, legs, etc., until it went away for a couple minutes. Had to call the nurse to come and remove the catheter. Think it had developed a kink somewhere and the urine wasn't coming out. Owwwwie!!!!!!! Soon as the catheter was out, the spasms stopped so we know for sure that was the cause.

So we're back at square one until we figure out the next move. A supra-pubic sounds like the answer, but I have to get to a urologist first and that's the problem.........transportation. This is really a pain in the "patoot"..........I hate this disease!!!!!