Aa
Gone Fishin'
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
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
Gone Fishin, Huh?...I was going to ask..Where's was my invite?..and then I read your post (how misleading). Urodynamics test, UTIs, fatigue, oh my! Never mind about that invite. I don't want anything to do with that. That's not how we fish in Ohio. LOL
All joking aside, I'm glad your back.
Take Care
All joking aside, I'm glad your back.
Take Care
Hi Quix,
I'm sorry that you'e still having problems. I hope the Uro-G appt today goes well for you and they can help you figure things out.
My grandma would always tell me -
"Don't let what you cannot do interfere with what you can do."
I try to keep that in the back of my mind when I'm starting to feel down.
I'm not sure where the quote came from, but it always seems to encourage me.
I hope that it will help you.
Stay strong...
Kelly =)
I'm sorry that you'e still having problems. I hope the Uro-G appt today goes well for you and they can help you figure things out.
My grandma would always tell me -
"Don't let what you cannot do interfere with what you can do."
I try to keep that in the back of my mind when I'm starting to feel down.
I'm not sure where the quote came from, but it always seems to encourage me.
I hope that it will help you.
Stay strong...
Kelly =)
Very happy that you are back. Some guy named Noah's been looking for you.
A waterproof cell phone might be a good idea.
Peace & blessings.
A waterproof cell phone might be a good idea.
Peace & blessings.
I'm sorry you haver been going through this, please take care and I hope things start to improve very soon.
Mand
Mand
So sorry to hear that things have not improved overall. I certainly can relate to the incontinence issue and how it zaps every ounce of strength and self-esteem.
We'll take you and your insights on any level you feel comfortable with, it's just good to see you post even if it's only a few postings at a time.
Take care of your self and I'll keep my fingers, toes and legs crossed that something can be worked out to get you back to your former state.
Miss you,
ren
We'll take you and your insights on any level you feel comfortable with, it's just good to see you post even if it's only a few postings at a time.
Take care of your self and I'll keep my fingers, toes and legs crossed that something can be worked out to get you back to your former state.
Miss you,
ren
I soooo want to speak to each of you who wrote such nice messages. My energy is still in very short supply.
The med did get out of my system, but nothing improved. I think the incontinence jsut continued to worsen. My UTI is under control. I see the Uro-G tomorrow. I am kind of hoping that she gives me something to completely relax the bladder and has me self-cath.
I never realized how life-limiting it would be to have no control over the bladder. If we can't do anything, I only see a full diaper in my future. I have to confess that my mood is as low as my energy.
I will try to be on here more often. I miss it so much.
Mama Quix
The med did get out of my system, but nothing improved. I think the incontinence jsut continued to worsen. My UTI is under control. I see the Uro-G tomorrow. I am kind of hoping that she gives me something to completely relax the bladder and has me self-cath.
I never realized how life-limiting it would be to have no control over the bladder. If we can't do anything, I only see a full diaper in my future. I have to confess that my mood is as low as my energy.
I will try to be on here more often. I miss it so much.
Mama Quix
Oh, ack, no fun at all. It sounds quite horrible. Here I was being distressed over leaking, when you've got a breach in the dam.
I think WeakandFalling's suggestion is excellent. I really dread the moment when I fall for the first time. If I had something like the Lifeline, or even just a cell phone, that would be great.
It seems like a fully charged cell phone, even without a whatsis card, will work to call 911.
I think WeakandFalling's suggestion is excellent. I really dread the moment when I fall for the first time. If I had something like the Lifeline, or even just a cell phone, that would be great.
It seems like a fully charged cell phone, even without a whatsis card, will work to call 911.
Wow, I don't know what to say, you have had about all anyone could possible stand. I sure hope that next week will bring a bright streak to your days in that everything will go right.
Dennis
Dennis
Quixie,
I am so sorry to hear about your ongoing struggles with the bladder issues, and so glad you didnt get hurt falling from the chair.
I am thinking about you lots and truly hope the new plan with the uro, will go well and be the thing to fix everything. Sounds good, doesnt it?!
Tons of hugs to you my friend,
Michelle
I am so sorry to hear about your ongoing struggles with the bladder issues, and so glad you didnt get hurt falling from the chair.
I am thinking about you lots and truly hope the new plan with the uro, will go well and be the thing to fix everything. Sounds good, doesnt it?!
Tons of hugs to you my friend,
Michelle
So sorry to hear about your current troubles!
Take good care of yourself!
Sending you hugs,
Chrisy
Take good care of yourself!
Sending you hugs,
Chrisy
Its all been said but as you 'went fishin' Laura 'should have gone fishin' ....was that an accident ? I know, I know, am I asking a dumb question? I do that a lot.
After I get this far my head is swimming from all the posts..
please get better, sounds just awful..I don't want it !
hugs, meg
After I get this far my head is swimming from all the posts..
please get better, sounds just awful..I don't want it !
hugs, meg
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
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
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
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
>>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 ...
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 ...
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
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
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
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
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
Lots of Hugs,
Rena
wow.
i am so sorry. and so impressed with you. welcome back. you made it through. : )
i am so sorry. and so impressed with you. welcome back. you made it through. : )
Yeah, what everybody else said. Well, the good parts, at least. Peace & blessings, Momma Doc, & watch out for those windmills. The new ones seem to turn at higher speeds, or have a greater reach, depending on with which old ones you compare them.
hey doc, really sorry to hear of your new episodes. just figured you were taking a deserved breather.
Clyde sounds like the interesting fella.
dust bunnies and battleships. funny you should mention that. had a chief in the navy had us picking those suckers up all the time. he had a thing for clean floors/decks.
well, just hope you get to feeling better and into calmer waters soon.
your friend
Clyde sounds like the interesting fella.
dust bunnies and battleships. funny you should mention that. had a chief in the navy had us picking those suckers up all the time. he had a thing for clean floors/decks.
well, just hope you get to feeling better and into calmer waters soon.
your friend
Hope your feeling better soon. And do get some resolve to the situation.
Best wishes
Best wishes
Quix,
I am so sorry that you have been going through so much!
When I saw your post I clicked on to say that I was thrilled that you had taken a little vacation because you deserve one. Silly me I should have known that you didn't really go fishing, lol.
Thanks for checking in - how thoughtful you are even when you are down to check in and let everyone know that you are still with us and what has been going on with you.
Take care of yourself and I hope that each passing day helps you to feel more like you again.
Hugs,
Erin :)
I am so sorry that you have been going through so much!
When I saw your post I clicked on to say that I was thrilled that you had taken a little vacation because you deserve one. Silly me I should have known that you didn't really go fishing, lol.
Thanks for checking in - how thoughtful you are even when you are down to check in and let everyone know that you are still with us and what has been going on with you.
Take care of yourself and I hope that each passing day helps you to feel more like you again.
Hugs,
Erin :)
should I Fedex a few hundred caths your way? I almost have enough in reserve to go from here to there if laid end to end. Ok, not really that many at 6" each, but definitely enough to get down the street to the next corner. :-)
I'm glad you decided to go public and fess up here - they weren't buying the *she's gone fishin'* alibi and your absence was noted.
take care,
Lu
I'm glad you decided to go public and fess up here - they weren't buying the *she's gone fishin'* alibi and your absence was noted.
take care,
Lu
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