Gone Fishin'

[Quixotic1]

Hi, all.  I want to thank everyone who has written worried that I haven't been posting.  Sorry to drop from site, but I just couldn't bring myself onto the 'puter during the bad days.  First, I'm doing a little better.   The weird Uro-G visist with the 6 stairway fire alarm was just the beginning of a particularly horrid interval in this MiSerable disease.
  
She gave me a med (Enablex) to try to calm the painful bladder spasms and help with the worsening urinary incontinence.  However, the med, even at its lowest dose, made everything worse and made me feel very sick, nauseated and depressed.  Instead of quieting the excited bladder, it caused it to cease emptying (she thinks) and caused acute retention.  Then my bladder stayed full all the time and the overflow overflowed.  The bladder twitched, spazzed, and cramped all the time, but wouldn't empty much at a time.   So, instead of being incontinent only when I needed to go (along with painful cramping) I was leaking constantly and dumping some when the bladder spasms were worst.  I was running through a dozen and half of the extra large pads every day, plus rushing to the bathroom to piddle a liddle.   Any energy I have had was used up mopping the hardwood floors and doing laundry.   Sorry to be graphic.

Has anyone else noticed that the faster you try to walk (with spasticity) the stiffer and lower you move?  That demonstrates the "rate-dependent" nature of spasticity.

I had a horrible public flooding and stopped leaving the house.  We thought maybe the full dose would reverse things, but it got even worse - So, I've been feeling wretched and feeling very embarrassed which is not like me.  Clearly it was interrupting my sleep.  I stopped the med on Wednesday, but it is an extended release med and is taking a while to get out of my system.  Today is the first half decent day I have had, but I'm really sleepy.

So, the Sleeping Beauty awakened only in time to be kissed by a toad and transported to a swamp. I am awaiting someone to magically save me from the ongoing tsunami which is my life.  I see the Uro-G in 11 days for a new urodynamic study and a new plan.  And hopefully a pair of paddles and hip boots.  The whole thing has left me feeing cruddy and weak.  Yesterday I was bent over behind my recliner trying to plug something in to an electrical strip.  My weak leg slid slowly out from under me, and I slid down.  I was left to contemplate the various dust puppies, lost pens, empty cups and a dead mouse who had apparently died in one of the floods, that have accumulated over time.  I looked for the lawn snake that Clyde had brought in which made a dash for freedom back there, but he was long gone.  I yelled for my sister, but she didn't hear me.  Of course then was when I also needed to rush to the bathroom - natch'.  So I sat and played "Battleship" with the dust bunnies and petted the worried felines as they wandered past until I rested enough to haul myself up.  Of course now my shoulders and wrists are sore from the pull back to my feet.  I need to get this wretch into shape...(and someone needs to sweep this place!)

There are so many interesting things being discussed so well on the forum.  You are carrying on nicely.  Newcomers are so impressed with the place you are creating.  This is quite the remarkable place we have.  I realize that I can spare my family the litany of my woes when I have all of you to dump on.

I hope to feel more like using my waterlogged brain soon.  Still incapacitated by Cog Bog - an apt expression if CCSVI is playing a role, don't you think?

Well, off to the BR.

Love ya all

Quix

[Celery47]

Dear Quix,
I'm so sorry you've been having such a tough time.  I'm really, really hoping something works out for you soon!  
I just wanted to say, too - well, this has got to be such a frustrating topic, but I have to say, I love your writing!  I mean, I was really "there," looking under the couch at all the fuzz-balls, and the mouse - you sure do make this interesting :)
I've got my fingers crossed for you.  I'm so sorry this has been so hard!!
Best to you -
Louey

[anon07072023]

After only being on here a short time, I have already started to miss your dispersements of knowledge to the community & your "quix" humor. I was wondering what had happened to you. I see that even when your not feeling well, your humor is still intact, and very entertaining.

Welcome to MSville, right?

I have a spastic bladder and spasticity in my legs, too. I can certainly understand your legs not cooperating with your mind. And I had a urodynamics and cystoscopy a couple months ago. It went OK, until the doctor pulled out the OOZIE for the cystoscopy. Not fun at all!

I hope the Enablex has a shorter half-life than what they normally expect, and you can get that crap out of your body soon and feeling well again.

Thanks for checking in with us - as you can see by all of the comments, we were all worried about you.

Hugs, =)
Kelly

[Ufrustrated2]

>>Like the flower needs the rain ...You know, we need  you ...Guess we'll start it all again...You know, we need  you ...Like the winter needs the spring ...You know we need  you ...we need you ......You know we need  you ...we need you, we need you

ok, i can't sing or be very creative but those lyrics sums it up for the forum and you being around just being you ...

hope today is being better towards you ...

[MsWobbles]

One more thing:  Quix it distresses me to think of your being stuck on the floor with no help.  What if next time you encounter a dust bunny that turns out to be a spider?  Or a mouse who survived the flood and is hungry??  Please always keep your cell phone fully charged and always in your pocket and have your family members do the same so you'll be able to reach someone for help next time.  It might be good for you to get some kind of medic alert system, like Life Alert, that you could easily wear around your neck to call for help.  They also would have your all medical history on file to share with the hospital in case of the need for an ER visit or hospitalization - you'd have a Life Alert card in your wallet with the number for rescuers to call for info.

Now I'm really worried about you!!  Is there any way you could brace that leg that goes out on you?   Please be prepared!!

More hugs!

WAF

[MsWobbles]

Dear Quix,

I am so sorry to hear how miserable it has been for you!!  Good grief!!  And it's not even hot weather yet!!  Not sure how things are in Oregon, but here in Utah - the weather is cooperating nicely for any MSers here - it's staying cool/cold.  Had to drive in a blizzard four days ago to get to my doctor's appointment!!  It felt good, in late April, having to clear my windshields of the considerable snow that had accumulated after only an hour in the MD's office.  Now if there were a way we could just skip summer altogether!  I've got the cooling packs for my new cooling vest ready in the freezer - just in case the hot weather sneaks up on me.

Anyway, you poor thing!!  Lulu's kind offer to Fed-X you some caths is something worth considering - sounds like you need them!  But no matter what - even in such miserable times for you - I see you still keep your sense of humor.  I was cracking up reading your post.  You're still a stitch!!!

I hate bladder spasms and the pain of a UTI!  Had to go to the ER many years ago with those due to spasms from a UTI - 100 mg of Demerol IM worked very nicely for me - knocked me out for about 20 hours.  You may get a UTI from chronic retention - keep some pyridium on hand in your medicine cabinet since, as I'm sure you know, those pesky UTIs usually appear at about 2:00 a.m. on a weekend when your MD will not be available.  

Have you been in touch about this with the MS MD you liked so much who moved to California?  It might be good to get his input on this before you go back to the urologist.  I'm glad you're off that med which made you feel so much worse!!

I can sure relate to your experience with Cog Bog.  I just had to contact a company I had ordered something from yesterday because the last number I gave them in our address was wrong!  The other day I ruined the punchline of a great joke by saying "Chapter 13" (thinking it was the bankruptcy chapter) and I couldn't understand it when they didn't laugh.  They just asked, "What is chapter 13?"  I meant to say "chapter 11!"  Then the other day I pulled up to the Wendy's Drive-though to order my son some half-pound bean burritos (oops, it was the nearby Del Taco drive-through I meant to enter).  I hope the weekly vitamin B12 shots I'm now getting will somehow help this brain fog that settles in on me!!

Anyway, Quix, I sure hope things improve for you SOON!!  We miss you so much here!  I had read someone's comment about your disastrous GYN visit, but couldn't find your post about that.

Stay dry!!

Many hugs!!

WAF

[Rena705]

I now have a bone to pick with you honey!!  Now every time this summer I leave a note saying "Gone Fishin" what are people going to think?!  hehe  Seriously honey I was asking where you had disappeared to but I am glad you are hanging in there.  Sorry to hear about your water problems and I sure hope that your further testing can get you some relief!  I have been checking in occasionally in the last few days so I will try to answer as much as I can as well while you are "fishin" ok?  Hope to see you back here soon though and I hope someone can help you with your problem so that you can get out in the world again without worrying about the next flood!

Lots of Hugs,
Rena