CES gives and CES takes away

I had been rolling along, feeling pretty darn good for a while now.  I was getting a little sassy, thinking I was doing awesome and that CES wasn't as big of a problem for me.  I have my grandparents visiting and even though I'm markedly slower walking and doing things than my immediate family, I am not nearly as slow as my grandparents are at walking and climbing stairs, which made me feel pretty awesome.  Not that taking pleasure in the ailment of the elderly is something I'm proud of, but feeling so inferior for so long around my family I found solace in my victory of not being quite as bad off as I had thought I was.  I got a little too sassy.

CES showed me that it was still the boss of me.  There has been a nasty stomach virus running amok and I caught that bugger.  Yeah.  Bowel control, which I'm usually doing pretty okay with was lost.  I soiled my pants and that put me back in my place.  Then recently I have passed gas while talking with people.  Yeah.  I try to just pretend I didn't hear it, or it was my shoe making a noise on the pavement or anything but the fact that farts can and do fly out of my rear at random.  I have very little control over my gas.  I had been doing much better with that for a long while, but yeah...CES decided to remind me that I indeed had that stupid rupture and surgery and that I am never going to be fully functioning.

One Happy Camper and his Momma...

I can still camp!  Without a real toilet too!  I managed to have a decent time and woke up with minimal stiffness and only had a few leg cramps in the night and it was cold!

I'm happy to report that I can indeed still camp.  I don't enjoy it like I used to, but to make my younger son happy, I can do it a couple times a year.  He had a blast and I lived through and am so happy that he was so happy!

I was surprised at how easily I slept on the air mattress and that I didn't wake up in pain.  Even when I had the leg cramps it wasn't as painful as it could have been.  I did develop a headache today after getting back home.  I tend to hold all my stress in my neck and shoulders and it all attacked me once I got home.  I managed to get rid of it with advil, a nap and a hot bath.

Right now my foot is really burning, probably from all the walking but overall it was a good day.

Can I still Camp?

I'm going to find out tonight if I can handle lying on an air mattress (I hope) or the hard ground and survive.  I'm taking my younger son on a family camping trip with his Cub Scout pack.  I used to enjoy camping, then I grew up and had to do all the planning and work involved and now I don't like camping so much anymore. I hope I can get the air mattress blown up.  We shall see how this goes.

Lately I've been feeling stronger.  I've not had as much tingling pain or that sharp shooting electrical pain either.  I think I can feel a bit more in my backside, but it's still fairly numb.

I've had one bowel accident and I had been sick with a stomach thing.  It was not pleasant, but I had been asleep and woke up to a mess.  Ugh.  At least it was contained to my underwear and pants.  It's not pleasant thinking about this, but it's my reality.  I'm fortunate to not have bowel problems very often.  I spend a fair amount of time on the toilet but it's contained and not the opposite problem.

I still have some hope that I can get stronger and stronger.  I honestly haven't really been trying that much.  I have a treadmill that stares at me everyday and I just ignore it.  I really need to become friends with it again.

Footsies

I have been continuing to feel well.  I had been taking the kids to the pool and I was trying to exercise my left foot in the kiddie pool some.  I did that one week and then it felt like my foot got MORE numb!  What the heck?  Seriously?  I thought it would help strengthen or something, but instead it feels more numb on the right side of my left foot!  Great.

Other than that snafu, I've been doing okay.  I think I fixed my gait and smaller calf problem, it was my shoes!  I had been wearing the same pair of shoes for over a year...all the time.  When I got new shoes, my gait got better and my calf seems to be better.  I did not go to the doctor, because I just didn't want to go through the explaining and what have you.  I'm feeling okay, so no need to be up there. 

In other news about my problems, it seems that I have regained some strength in my pelvic floor as I can now make some extremely tiny movement happen when attempting to do kegels.  Yay! 

What's been going on?

I've been doing well as of late.  I've not taken much time to write here or anywhere else for that matter.  We did take our trip to London and I did amazingly well!  I surprised myself with how well I did.  My left ankle and foot swelled some, but not bad.  I didn't have any pain and I was able to keep up with the family walking all over London; up and down stairs at the tube stations and everything!

I had zero bladder or bowel issues during the whole trip!  I cannot express just how very excited I was about that!

I don't think I have gained anymore sensation.  I passed the one year mark on May 18th. My original neurologist that did my surgery told me that don't despair that it can take up to two years.  After two years, you got what ya got!  I look back and realize just how far I have come.  I still get depressed sometimes when I think about all that I can't do, but then I have to look at what I can do!  I've started back to school and am going to become a Lactation Counselor and hopefully, eventually a Consultant.  I can walk.  I still have my sweet family.  It could be worse and I have to remind myself of that.

I think I will update here more often with my symptoms when they creep up.  Like this morning I got out of bed and woke up one kid.  I went back to sleep for an hour and then got up to wake up the other kid.  I did not go to the bathroom first and I started leaking urine!  Ugh.  I have to remind myself to go as soon as I get up in the morning.  I don't always have the sensation to pee.  Sometimes I do, but usually I just go because it's been like 3 or 4 hours and I know that I should.  I still leak if I sneeze hard or cough.  Not every-time I sneeze, but any at all is distressing.  As for my bowels I haven't had any accidents with that in a very long time.  I usually just have the problem of it not wanting to come out easily.

Today my left foot feels less thick, but I'm getting the shooting electrical pains on the bottom and left side of my foot.  As far as I can tell there is no reason for these episodes, they just happen.  Those nerves just do what they want, when they want.

I've noticed that my left calf is smaller than my right, by a lot.  I guess with my limp I use my right one more than my left.  My left foot likes to turn on it's side too. My gait is all off.  I've been considering going to my doctor and see if I can get a referral to physical therapy and see if they can help me out with strengthening this left leg. But then I think I don't want to.  I hate having to have an appointment to go do stuff all the time.  I'll think about it and then decide.

I've recently been reading a great new blog from a guy named Mark that is doing a fantastic job explaining what Cauda Equina is and he's funny to boot!  He found me and left me a message.  I am so glad that he did.  You should check him out here.

I promise to make time to write here about how I'm doing more often.  

A rambling upate

Things have been improving, albeit, slowly.  I made it through my six weeks of recovery for the bladder and hysterectomy.  I was excited to "get busy" on Valentine's Day as it marked my 6 weeks.  I'm happy to say that it went well.  Very well.  I'm relieved to have the leaking urine problem resolved.  In the times that we have had intercourse since I have actually been able to reach orgasm, which is so awesome.  I was so afraid that I would never be able to again.  It takes me longer than it used to, but by golly I get there.

With all the numbness, I was nervous that I wouldn't be able to feel anything.  Strangely enough,  I really have been regaining some sensation; little by little.  I've had a couple of days of awful electrical nerve pain that comes in waves; similar to contractions.  They would come every 30-45 seconds.  Nothing seemed to quell them.  I used Motrin but I don't think it did anything.  The pains finally subsided and the next day it seems that I regain more sensation.  Sometimes it happens like that and sometimes I just happen to notice a tiny area where I can feel light touch again.  I'm actually hopeful now that I can regain more sensation as time goes on.

As for foot and leg strength, it to seems to be getting better.  My left foot has the burning sensation and almost hypersensitive to touch.  I can walk a bit fast and do more each day.  I really should start up a program.  I have it in my head to do it, but to get up and actually do it is another issue.  We have a trip planned to go to England and I've got to get stronger to make it through that.

My bowel issues are still there.  I'm hoping that if I can get more sensation and build up more pelvic strength then any incontinence for my bowels will go away.  Right now I'm more constipated and have to aid the matter out.  I do notice more strength in that area though.  I'm hoping for more improvement there as well.  I think since I got my uterus out of the way and the bladder fixed for the most part, I have more hope to feel better and more normal.  I realize that this is  my new normal, but I'm not depressed and hopeless about it anymore.

Since the bladder repair I do still have residual urine in my bladder after initially emptying.  I usually just lean over and push on my bladder and get the rest out.  Sometimes I do have to stand up and try to go again.  So far I haven't had anymore bladder infections.  I have only leaked a few times with hard coughing.  I had a cold and another time when I vomited, but those are the only times.  I've been up and down the stairs with no issues!  This makes me very happy.

Foley Removed

I went in to the clinic to get the Foley removed on Tuesday.  They took it out and then I was "on the clock" to pee.  I sat there drinking a liter of water and waiting to have to go pee.  They gave me a "hat" so I could measure the amount that I peed.  After about an hour I tried to go.  I tried to relax, and of course the doctor comes to the door "Ma'am are you still in there?"  Yes.  Of course she says, "Take your time!"  Then not 3 minutes later someone else knocks and tries the door.  I cannot perform under such conditions.  I managed to eek out a literal spot of urine.  I was near tears.

The doctor came back  into the room and I tried to tell her that it may be in my head and that I just can't pee with people knocking on the door etc.  She gave me a plastic grocery bag to put the "hat" in and told me I had until 3pm to pee and get back to the clinic for them to see if I had residual.  What a relief.

Cody and I went over to Midtown (a little plaza place where there is a bowling alley, food place, movie theater and it's attached to the gym.)  There is never a lot of people in the bathrooms there, so I went there and was able to pee.  I managed 300ml.  We headed straight back to the clinic and they straight cathed me and got out a residual of 140ml.  Ideal is of course less than 50ml, but the cut-off was 150ml so I passed that...barely.  I was released back into my natural habitat without a catheter.  Yay!

I was exhausted and took a nap and woke with a horrible pain right over my bladder.  I slowly made it to the bathroom and peed.  It came out slowly and with much coaxing, but it came out and the pain went away.  It was almost like a spasm of sorts.  My bladder was and still is pretty sore.

The next day I was really sore and wore out.  The walking at the hospital and to midtown did me in.  I'm only two weeks out and really need to take it slowly.  It's hard to make your mind to let you rest.  There is always so much that needs to be done all the time around here.

Today, Thursday, I walked the boys to the end of the street to catch the bus this morning.  I could feel my belly swelling up some.  There wasn't much pain, but comfortableness.  I walk extremely slowly as well.  I got back to the house and went to the bathroom and found that I was spotting a wee bit, so that means I'm likely doing a bit too much.  I'll have to slowly build up to walking longer distances.

Today I was having trouble having a bm and realized that I do indeed have a rectocele.  I did not get any of those type of repairs done because my doctor was too afraid of doing anything vaginally because of my Cauda Equina and the chance of another rupture.  She was afraid that me being in the required position would put too much pressure on my back and it would cause another rupture.  Ugh.  She came to this conclusion from consulting (emailing) a neurosurgeon friend of hers.  He has not seen my MRI or X-Rays and actually doesn't know much of my history, but hey; better safe than sorry.  There isn't a neurologist here that would have been able to do anything for me if something did happen.  So that just means that later on, I'll likely end up with another surgery if the symptoms get worse.  As for now, it's annoying but not too bad.  I did the whole stinting thing and it worked.  I hate that my body feels like it's falling apart.

I have no definitive proof that Cauda Equina caused my prolapse and other pelvic problems, but I believe that it hastened them.  I probably would have had these issues anyway, but months of being numb and having no muscle control in my pelvic region HAD to have forced the prolapses to be accelerated.

Surgery

I had surgery on Jan 4th.  The doctor did a bikini cut and took out my uterus, cervix and some dermoid cysts.  The cysts were unexpected, but she said that they were benign.  She also did a Burch bladder suspension.  I was under for several hours (somewhere around 4 or 5 hours).  I came out of it well.  I don't remember being woken up like I have for the past couple of surgeries.  I was woke up by my doctor and she was just talking to me.  I didn't have that feeling of being jolted back into reality.

The first 24 hours I was on morphine with the button to self medicate.  I didn't have to use it too much.  I slept a lot.

They removed the Foley Catheter and I had 6 hours to pee.  I was feeling very swollen and my bladder actually hurt a good bit.  I couldn't get anything out, just a dribble.  The put the Foley back in and we waited another 24 hours.  They removed it again and I was back on the 6 hour clock.  I managed to pee a couple of times and it was sort-of easy, I just had to relax and do it, instead of strain like I had been doing before.  However, I peed and then they straight cathed me and I still had 500ml left in my bladder.  THAT is not good so they put the Foley back in and I went home.  I wasn't able to fully empty my bladder.

I go back to the clinic on the 17th to remove the Foley and hopefully fully empty my bladder and be done with this mess.  They will remove the Foley, give me time to pee and once I do; straight cath me again to make sure I'm fully emptying my bladder.  I hope that with a full 10 days of rest and healing my bladder will be ready to work normally.

Now if I can get my leg to stop hurting and regain my strength, I'll be doing pretty good.

I'm supposed to be recuperating for 6 weeks or more.  I think I'll get there.