so absolutely discouraged and worn down !!

[candy158]

Hi, well, it is through teary eyes, that I tell you guys that my infection ( UTI) for those that don't know me)  is back.  My GP does not know what to do.

I will be going back to OPAT ( IV antiobiotics centre) , on Monday, and will see what they say they should do.  

They have talked about an indwelling cathater, and I DON"T WANT THIS !!!   very teary now, what the h*ll is going on, I just don't get it.

I'm supposed to be getting ready to start the Avonex and then my blood came back high in alkaline phosphatese and they held off sending the request, not they say that it is ok, and should start next week.

I don't know if I can take that one too, what if I do get sick from it ??  How will they know what it is from ???

I just don't know what to do now, soooo very discouraged, and lost trust in the Dr's ...

sniffing,
Candy
:(

[candy158]

thanks guys, it has been an incredibly hard week.   Hoping to start my Avonex next week, if we hear from them back , on Monday..

Could only leave messages today...

Candy

[Guitar_grrrl]

((((Candy))))  I send my best thoughts to you and your family, Candy.  I'm sorry for your loss.

[anon07072023]

I'm sorry that your SIL's brother passed away from cancer.  He was so young. :-(

[karryon55]

Lol....did I mention that I appear to have lost my brain somewhere along the way. I still don't get it though. Maybe I will just rest my brain for a bit longer.

Hugs....Karen.

[candy158]

so sorry for your own loss, it is so very hard to lose a loved one...

((HUGS))
to you Karen....

[candy158]

Thanks Karen, they are not blaming the infection on MS, but the symptons....

They can't figure out how it all happened, we just know it did, and I still don't feel well.

(HUGS)
back at you,

[karryon55]

I'm so sorry for your loss Candy. My thoughts & prayers are with you during this difficult time. I've just spent the last month with ICU visits & in the end my Aunt passed away. I have found out how much stress can do to a body with MS & RA. It's not like I could have avoided the stress though.

I also do not get how they can blame the super bug on your MS. I have purchased some urine analysis dip sticks so I can check my urine if I have suspicions. They aren't cheap but pretty accurate. If it comes up with positives I send it off to the lab. I was just thinking for your piece of mind that's all.

Hugs......Karen.

[candy158]

yes Corrie, it is a head scratcher, especially when the symptons are all there still, the sweats, chills, pain, back ache, and general feeling of yuckiness( my new word) .... :)  

I don't think it is clear, but what the heck do I know,....... so, will wait and see what happens next, I guess.....

xo

[mikeysmom1995]

Oh Candy,
So sorry for your loss. I will continue to pray for you and your family.
HUGS, BARB

[Corriel]

My condolences to you and your family on your loss.

So the bacteria just disappeared? I don't understand either.

I guess if all is clear now that's a great thing, but a head scratcher for sure.

[candy158]

well guys, they stopped the IV treatment today, said it was an MS attack, and said my urine looked clear.  

I don't get it, on Thursday last week, we had a SUPER BUG and now it is clear.  God only knows what is going on, and I'm to tired to fight back right now, so will just see how we do, emerg. isn't all that far away if we need it.

We lost our Don this morning, he was our SIL's brother, and he was 44 years old and fought the good fight, but lost his battle with colon cancer.

It is a VERY sad day for us right now....

[HVAC]

It sounds rough. I am thinking of you.

Alex

[rendean]

DEar Candy,
So sorry to hear about your bladder infection and your son-in-laws brother!! SO MUCH on your plate!!!

Sending good thoughts, some brains for the doc,lol, and hugs for you!!!

HUGS,
Ren

[SarahL2491]

hang in there girl, we'll get it worked out, one step at a time!

hugs
Sarah

[anon07072023]

Oh, wonderful as usual. Not. :-) Getting ready to have hip surgery on Dec 10.  
Repairing my labrum tear (cartilage around the hip socket) & will do debridement around it & the bone & then re-attach it to my bone. Then they'll do a secondary surgery lengthening my iliotibial band (IT) band & do a trochanteric bursectomy.

All the while have to do it inpatient & stay in the hospital as I have a risk of carcinoid crisis from my carcinoid cancer (already happened before with just a mini anesthesia during an endoscopy EUS - tachycardia, flushing, etc). So, needless to say - I'm a little nervous.

And they found another new lesion in my lower right abdomen next to or on my ovary or bowel, that's 2.2cm. Oncologist still doesn't know if he wants to do surgery or if the surgeons will agree to do it now.

ho-hum. :-(    

[candy158]

thxs Kelly, how are you doing ???

[anon07072023]

Whatever they do, I hope they can make it right. You shouldn't have to go thru all of this.
Hugs,
Kelly

[candy158]

Hi  guys,
Thanks again for all your support and prayers.  

Kelly, yes it is e-coli ....... the SUPER BUG kind .. I was told this morning.

I am back on IV antibiotics  for the week though, and there are a lot of new Dr's on my case now too.  There are a number of options surgeries though, that they can do .. one was the in-dwelling  cathater, or making my bladder surgically smaller so it can't hold as much, ( I have a very BIG bladder that is floppy , apparently) , that is what I was told my my urologist.  

The Dr.';s will be speaking to him too, and waiting to see what they want to do about the prolapse bladder surgery that did not work, and the new Dr' is supposed to have some other kinds of ideas.  So, we wait again, going to the hospital everyday again,and will go to see the NEW Dr. on January 7th ...

So, we are terribly busy, and not doing so well, my son-in-law's brother, whom we are all close to, was taken to hospice yesterday , so, we are needed there too.
Those who pray, please pray that things will lighten up a bit, and to give D his strength he will need for his journey, and the faith that we left behind can hold on to !!

Thanks again,
((HUGS)) to all,
Candy

[MommyofNatTyZach]

Hope your apt. went well!!! Prayers!

[anon07072023]

Uuuughhh! I'm sorry Candy. Is it E-coli related? I hope not. I hope the IV antibiotics will get rid of it for good & that you DO NOT have to get an indwelling catheter.
Sending hugs your way!

[mikeysmom1995]

Oh Candy,
So very Sorry you cannot get over this terrible infection. I too have bladder issues from not emptying completely which results in UTI. As maintenance to keep my bladder healthy, and so far so good, I take Cran-max and multidophillus. It seems to be helping.  It's just a thought.
I hate to here of you suffering so. Many prayers and lots of HUGS your way.
Barb

[candy158]

Will let you all know how it goes tomorrow.    

Thanks again,
Candy
\

[supermum_ms]

I'm just so sorry your still dealing with all this, my fingers and toes are crossed that the OPAT clinic can help!

HUGS.........JJ

[candy158]

thank you guys, today is a little better is spirit anyways !!   I do just have to let the Dr's do their thing, you are so right, but, I tell ya, if I had not done MY thing, the darn Dr's would not even have their information....  grrrrrrr

Hoping to start the Avonex next week, and will go to OPAT a 45 minute drive away on Monday.... and see what they say, that is where I went everyday for 5 days 2 weeks ago for the IV treatment ...... so, will give that a try and see what happens.  I think I won't leave the hospital until something is done.  My GP said to call him if the OPAT clinic won't help, then he will push for something..... DUH !!!

Going to have a rest,

((HUGS)) to you all,
Candy