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Ms took my control to give it back to me ???

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Posted 3/25/2008 11:40 AM (GMT 0)
 Ms .....sigh

Seem's it doesn't only in certain peron's take their ability to urinate on their own. But, it goe's further to not even let you know that you need to. I was used to cathing just becuz i "knew" i should but was so spastic yesterday that somehow i forgot? Went all day until about 6 pm before my first urniation (we know this isn't good).

but hey i didn't feel it and i felt so many other things that i thought needed attended to....

Wow, the air that gets trapped in the gi tract that suddenly bursts forth and its not a let off of gas lets say. Well perhaps it is...but it almost rocket launched me to the moon (lol)...wow , ive never heard this much air coming from me ever before (BIG SIGN! to attend to bowels, but wait dont i need to urintate first....

Oh but my hands they hurt and twist ..i need "THAT" neurontin released..Ok got that but bacoflen needs taken, where's that medicine bag and did i take that fiber yet, omg i didnt have anything to eat....but dont i need to go pee???

A whole day through it and no fiber taken, no suppository used...not enough liquids...no food swallowed but gee there is no appetite (but we all KNOW we have to eat)....im really going to....

Then Lay down and hope for peace but wow those does wreching my legs back n forth.......guess it wasnt just soreness in my back as we'd hoped....ive never had it turn me from one side of the bed to the other...like someone seperated my toes in half (did you know those things are hooked to tendons n muscles? i personally never gave that much though) but wow i didnt get outta bed this time..poor hubby fetched the bag for 1 tab of baclofen to allow me to "get up".........i guess the residuals will be big...

Ive now gotten my chid off to school with no breakfast..good thing they serve it at school and hed always pretty much eaten it there anyway...but wow he's seeing to much MS.....

He's adapting pretty good but still...he say's things like when he got his easter basket he said...wow mom i didnt think you knew me this good (all his fav candies) ...........is he ALREADY forgetting that I always noticed????<<<ugh..

Ok..........now i probably need to morning urinate and theres some citrocel in there but i just got those toes tamed.

Ms took away alot of control that id had. At first, i was appalled at how it took the ability to do certain things as well away (like hot baths) or (i cant just jump in the pool like everyone)....to bladder issues and things but now im seeing another side....

It now wishes me to control the battleground it left. It wants me to make my own bowels work. Create openings for urination and remember to clock them....

Get food in there so it can remain in there...that i might be able to push it through if im assertive enough with methods found out...

(but hey, when it has no  food or water its only going to hurt and cause more problems medically)

So....wow....

I now need to remind my body to do all that it used to do normally. I need to watch the pile up of emotions and drag myself out of all the sensations to remind my gifted child that he's gifted because he mirrors me (lol)...........

So, im left controlling what it didn't want me to control (didnt know i wasnt , but rather that it was a "given" that it all happened naturally)

So when i realize we always think this disease takes our control ...get Ready it'll give you back so many issues to stay on top of you'd better get a clock!

THANKS

kiera

Posted 3/25/2008 1:24 PM (GMT 0)

All this will...in time...become routine.  Part of your "new normal".  You'll pay attention to your innards and know that folks should urinate about once every 3-4 hours, and if you haven't, you need to.  And defecate at least once every 2-3 days, and if you haven't, you need to.  Eventually you'll get to a urologist who will help you work out a bowel and bladder program so that you get that in to your routine and it won't become a major focus of your life.  You'll wake up in the morning and take whatever meds you're supposed to take in the morning (like, I get out of bed, pee, and take my oxybutanin).  You'll get ready for bed at night and before you brush your teeth (also a chore you learned to do early on, and probably don't think about anymore, either), you'll take your meds.  And so on.

Babies learn to be potty trained...it's a matter of relearning that skill, using different methods.  Urologists are helpful with teaching those.

Posted 3/26/2008 12:37 AM (GMT 0)
Oh i agree of retraininig but when in exac and oh yes im in one for sure. Even hubby has never seen this before. Even my jaws hurt like omggggggggggg when trying to take a bite ...it found and included new nerves and im not over the attack yet..

Thats why im sort of confused. Id already had 2 good urologists that never mentioned my bowels. Id already been cathing every two hrs like you said to keep uti's away due to neurogenic,,my gp now writes any antibiotics for bladder tho...

when i was with top urologist she only sized me with caths , and sure she referred me to one locally but never mentioned the bowels other than history gathering.

Local uro did a look at the lining of bladder with scope due to kidney type pain , rule out a cyst.

Also would just speak with me about my urine and if i were in infection give me bactrim. Never mentioned the bowels and hes not gastrio so maybe im missing something here....

We'd went over all i needed as far as bladder. However, when in this episode i was trying to even want to eat..and i dont mean simply Kknowing i should was enough. I couldnt hardly walk. A neighbor called and saw me, she asked "have you been like This for past few days!? (id seen her about 4 ago) i told her yeah....and she said omggggggg
got up and hugged me and ive known her 16 yrs and thats the first hug lol. Either way she says shee gonna start checking on me

So with all that being pronounced its not that i dont know to do it..my legs wouldnt get me to kitchen to do it.....among a host of other things that i dont wish to delve into righ tnow for brevitys sake (fingers are torn to peives righ tnow)

Anyway my uro (any ive ever saw even for ms) have never discussed bowel And bladder program, but maybe i should go back to them? ? now that things have changed?

Either way i didnt getta do much of any of the things i knkew i needed to do until about 5. hubby got me some citrocel mixed in orange juice and i went to cath out bladder, neighbor brought some liver for me to eat as she kinda could see i wasnt getting food.....when i bit down wow..nerve clamped and shot thru face.

So yes , i need to think no more if this is from back. This is MS , this is an Exac. about the teeth thing..ack that hasnt happened in 2 days..im barely staying awake and im like in fog and not really doing to well??????????????? hygiene gone.........same clothes...


Ty for all the bowel info. I really see why its needed. I didnt mean to suggest if we felt well enough in residuals, to do all of these things, but didnt mean to say id even be able to control what the prob areas are but Ms ...kinda makes you try to anyway!...WE HAVE TO!...
thanks

very much

kiera
im gonna make sure i note the 2-3 days...yesterday what came out of me seems to be all the stuff trapped for so long. but spasticity helped in that area to move it thru.

oh and i totally agree that my "normal" will now include bowels and its always inncluded bladder, but right now the attack issnt over..so....its not all said n done yet..

Posted 3/26/2008 12:59 AM (GMT 0)

You seem "scattered" to me.  It's hard to know, of course, without actually being around you...but you have kids and a husband and a new dog...and you're not focusing on YOUR health issues.

Yes, a urologist is the one who can deal with bladder AND bowel issues.   But you have to FOCUS, and be able to tell him simply and straightforwardly what your issues are.  You CAN"T skip 2-3-4 days without urinating, or having a bowel movement, and expect to NOT have problems.  As I said, YOU have to keep track of when you urinate..and if you don't do it every 2-3 hours, then you need to FORCE yourself to do that -- lean forward on the toilet, press hard, press against your "private parts" until the urine is released.  I even "punch" myself to counteract the bladder spasms, so the urine is released.

You need to have a bowel movement every couple of days.  If it doesn't happen "naturally" -- then you need to MAKE it happen. Glycerin suppositories (the enemeez I suggested) are good. Ingesting fiber MAY help..but may not.  Again -- a urologist can help.

But it sounds to me like you run off to doctors sort of "helter skelter", mixed in with emergency room visits. You need to be sitting down with ONE doctor, go through ALL your symptoms, in a controlled and organized way: "This happens now, then this happens; I'm experiencing this pain, this spasm.." etc.

But YOU have to be in control.  If you're not urinating, you need to see a doctor..not wait for your neighbor or husband to notice.  If you're not defecating, YOU need to notice that, and take control.  Yes, you SHOULD go back to a urologist and talk about the bladder and BOWEL problems you're having, rather than guess that "my kidneys are failing and I need a kidney transplant", or "the pain in my side is liver failure", or whatever.

If in fact you ARE in an exacerbation, your neuro needs to hear about it. But you need to see ONE doctor..one neuro, or one family physician, and NOT run from doctor to doctor with each "attack". ONE doctor to see you OVER TIME, to NOTE all the different things that are occuring, and begin to treat them consistantly.  If you keep skipping from doctor to doctor to emergency room to doctor to doctor, your health care will be inconsistent and not really get at what is problemmatic.

I'm sorry to be so blunt. But you NEED to stop running around and get to ONE doctor, sit DOWN with him...take your husband with you to help you keep on track...and LIST all your symptoms, in a coherent and systematic manner, and ask for advice and treatment for each of them.

Posted 3/26/2008 1:14 AM (GMT 0)
I'm "scatttered" becaue even with the knowlege i cant get up to go tell "him anything" nor cfan i care for myself right now.


thanks



kiera

i can understand all you say and i will punch,..its not being able to walk to get there ok?..............only here tonight can i walk through the house. (i do know its hard becuz he cant see me)

p.s. i havent been to an er in over a year, but i did realize how bad this attack was from all of the slams on body....

so i dont think im realying it to you well enough, the doctors have me coming whether i  feel liek keeping apppointments or not andddddddd they all think and Say im a great patient.

 Sorry i stopped reading when it didnt seem supportive but i do know yoru sayng this for my good.

i never ran off assuming kindy failure they told me i was headed there as far as the decrease in function i relayed to you so i did believe "them".

ive never thought of my liver but ok. If youve never had someting i dont think its inhuman to understand a person does not know until theyve first felt it. Youve been thru all of this and i can learn from you but pls undeerstand that i hadnt had this before!

oops i asked hubby er was 2yrs ago for  1 kidney infection with projectile vomiting and 1 was administered steroids by doctors decision for way less things than now.

i did mention ER yesterday but only becuz of how bad this is for possible admission. I may vent feelings here adn with cognition or spelling probs that sound scattered but thats part of this as well.

Posted 3/26/2008 1:29 AM (GMT 0)
OH an dmy neuro is the one who notes all symptoms via the phone and no other doctor this was already worked out and hubby adn i went to him this past week so we've done all that you say

familly doc requqires me to come in and she checkss for other things as she wants..

i have no run from doc to doc...i was sent to spinal doc as of last year so this wasnt a new doc

i ahve a care team of

eye doc
spinal doc
gp
neruo

no running around to nuthin other than scheduled appts.

gp referred me to kidney doctor as i had only asked for 24hr urine so i coould ensure kidneys were ok to take med to help stop smoking when she got Way serioous and said we HAVE to get you to kidney doc and they r the ones who want a pelvic that they wont be getting as it wasnt from the dnc.

Posted 3/26/2008 3:11 PM (GMT 0)
Kiera,

You seem to be taking offense to what Uppitycats is saying here.  I think she is just giving you advice.  Your threads and posts can sometimes be hard to follow and seem to be really big rants.  You seem to be obsessing about your symptoms and I am truly sorry that you are suffering.  I would also like to see you get some relief. 

You can come on here and dominate this board with stories about how you are dying then you come back and tell us that you are better, you just needed a bowel movement.  I am sure you are suffering, this can be a hard disease.  I am sure you are still adjusting to your new diagnoses.  I am not unsympathetic at all.  But I wish that you could show more support to others rather than using every opportunity to go into your symptoms. 

You have a lot to add to this board but it can't always be about you and your symptoms.  Please feel free to support others here.  This is what this board is all about.

Best wishes,

Posted 3/26/2008 8:19 PM (GMT 0)
IF you look at last nights posts youd see i supported others.'

ive not ran from doc to doc and if you go back i only reported that my doctor said my function was 43%, it was uppity in her support that mentioned transplant.

I do not seize every oppp to rant any more than what i read last night that others have done being worried about fibro, thyroid, scared and i do empathize with them.

Im not obsessing about symptoms LOL i was told im very lucky i didnt end up in hospital for blockage by both my neuro and my gp.

I dont think taking sides is supportive either.

I feel if you read what i typed to her youd see that i covered all of what i was going through (inability to walk to do any of the needed things)

Also , i only have 1 neuro, the Cleveland Clinic , i went to but only becaue my one and ONly Neruo sent me there.


I dont think that its fair to judge as we cant see one another.

This is my opinion and i never judge anyone else's posts. You may feel free to read mine and youll never see one time that ive done that.


thanks

kiera

Attack is attack and there is not even an inkling of a chance that this wasnt New, Severe presenting of symptoms and a different attack than ive ever had before . Even my husband visually could see that. Neighbor could as well.

I also think it was pretty mature of me not to take offence and even agree to punch my stomach.

I thank you Gretchen that you care, but it wasnt just a bowel movement  it was indeed a total blockage that thank God didnt end up with a bag on me due to my not recognizing it for what it were. Even the neph was and is worried enough to of sent pelvic referral for fear something was way wrong. I dont think it was merely a crap i took nor do my doctors.

Im not offended but i have to say go over my responses last night to others and it was and always is total support to them.

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