Maybe this is the last time…..

Last week, I mentioned that I had surgery on my bladder, and that MAYBE it was the last time.  Not the last time I will need surgery, but MAYBE the last time I will need surgery for Botox injections in my bladder.  If you are interested in learning more about the how and why I have this done, please check out an earlier post, “You’re getting Botox where?”

The ‘short story’ is that I have both urge incontinence and urinary retention in my bladder, which makes my bladder have TOO much control in my life.  I currently self cath every day, have Botox surgery 2 times a year, AND receive PTNS treatment every 4 weeks to manage these issues.  Oh and I really try to laugh about it….smh

Some time ago (a couple of years ago), my urogynecologist talked to me about an device made by Medtronic called Interstim. (pictured above)

InterStim Therapy at a glance

The root cause of overactive bladder and urge incontinence are the sacral nerve roots, which control the muscle impulses that cause the bladder to expand and contract.

  • InterStim is an FDA-approved surgical implant device used to treat bladder incontinence and overactive bladder.
  • The device works by sending mild electric pulses to control symptoms such as leaks and urge incontinence.
  • InterStim can be reversed or discontinued at any time during therapy.

My first thought was SIGN ME UP!!!!  I immediately began researching this device.

The problem is, the device is not MRI safe.  ARGH!!!! (I HAVE to have MRI’s every year not only to stay on Tysabri, but to monitor my Multiple Sclerosis, and every other new injury I get.)  DAMN! DAMN! DAMN!

My doctor told me that the company was working on making a device that would be MRI safe, and it was just a matter of time.  MAYBE that time is now?!?!??!

Medtronic announced it’s submission of an MRI safe Interstim device to the FDA

This device is already being used successfully in other countries!!!!  If you have any experience with the FDA approval process, you know that it’s not quick.  My doc says that it was approved and should be available in April.  I haven’t been able to find any other source to confirm that though, so I elected to have the Botox surgery once again.

Even if the device is improved and that is the route I take, there is still no ‘guarantee’ that it will work for me.  There is a two week test phase etc.  The Colorado Woman’s Health website, provides a great source of information about the procedures etc, if you would like to check it out.  (IMO even better than the manufacturer’s website)  If you want more information, both sites are worth visiting.

Another treatment that I use is PTNS. (Percutaneous Tibial Nerve Stimulation)  IMO, this works similar to the Interstim device, but is performed without surgery.  I’ve posted this video of it being performed on my Youtube Channel if you would like to see.

Talking about bladder issues is almost as uncomfortable as living with them.  I said ALMOST.  If you are experiencing issues, PLEASE talk to your doctor about them.  There is help!  I have been dealing with my issues for over 20 years.  In the beginning, less invasive treatments: kegel exercises, bladder retraining, and medications worked for me.  Maybe I developed a resistance or intolerance to them and had to move on to the treatments I currently use?  I’m not sure.  I do know that the isolation and self esteem issues can be overwhelming.

If you have any questions, please feel free to post here or message me.  You can also contact me on my Facebook page.  I’m not a doctor, but I’m open and honest.

 

Another surgery?!?!?

Hopefully the last one this year…..smh

I haven’t seen the surgeon to follow up about my foot surgery yet, so I’m not sure that I’m “done” there yet, but I FINALLY have surgery scheduled for Botox in my bladder on Friday.

The last time I had this surgery was February 9th of this year, and since it only helps relieve symptoms for about 4 months, let’s say I am WAY OVERDUE.

If you’re interested in reading more, the link to that post is here….

You’re getting Botox where?

Both the surgery and “recovery” for this one will be a piece of cake, to be honest the scheduling of it is the most difficult part.  I also hope that doctors are able to come up with some other “treatment” soon because I suspect my body will develop an intolerance or tolerance for it.  (you know when a treatment just stops working?)  and having to carry or wear a bag of pee just plain sucks.  (yes even though I have officially given it a name, it still sucks).  So YAH surgery?!??!

While I’ve got you here though, (I hope you’re still reading).  Can I tell you about my foot?  AGAIN?!?!?

First the “technical stuff”

Today marks one week post op.  I see the surgeon again on Thursday.  I have FINALLY been able to put  weight on it (with the Boot on)  AND can tolerate the pain without pills!

even upI have even been able to walk to the bathroom as long as I have the “even up” on my other shoe to help realign me, stand up straight?  I’m not sure how to explain it, but it makes my shoulders straight when standing and takes pressure off my right hip.  Win win

Since I can get to the bathroom easier now, I was able to take the foley out.  First time I am ever grateful for having such a small house.  (10 steps in one direction from my computer to the bathroom and 15 steps to my bedroom in the other direction).

I no longer have to stay in bed

Keeping my foot elevated is still important though.  I was even able to get the wheelchair out of my house by myself.  I went for a “different” kind of walk the other day, more of a roll?  While I wasn’t able to take my “normal” walk, I did make it around the entire block in the wheelchair, using my arms for a portion and my left leg for the other.  It felt great to be moving again.  I know it will still be a long time before I am able to really walk again, it was freeing to know that I can “get out” by myself…and it’s a hell of a workout to help shed the pounds from all the ice cream Jeri delivered.

Thing One and Thing Two

Although Thing 2 and her boyfriend have been helping tremendously, (Ice pack and coffee deliveries right to my bed)  it’s refreshing to be able to do it myself.  Thing 1 and her husband stopped by to check in too.  She is 5 months now and the baby bump is really there now!!!!!!  As I have said before, I’m only a LITTLE excited!!!!!!   Yah grandbabies!!!!!!

granny imageWhile having so much time to ponder, what I would like to be called,  I think I am going to hope for Mammy,  but I will write more about that later.  I do know for a fact that GRANNY just isn’t going to cut it.  I can’t hear the name without thinking of Granny from the Beverly Hillbillies….. While I do have her spunk, it’s just NOT gonna happen.

Several of you have commented the you are sorry that I am going through so much, and I really appreciate it, but please don’t feel sorry.  I have amazing friends (you included) and family, and have never felt so loved.  Even Einstein has delivered food and….shhhh cigarettes :(.  I will pick up that battle again, just not today.

Thank you all for reading and commenting.  I am sorry that I have missed so much going on in your lives, I will remedy that today.

 

 

 

Teaching my phone to swear

Those of you that have ever talked to me on the phone, in person, gotten a text message from me etc, know that I have a “potty mouth”..  Not only do I frequently talk about “potty” and my bag of pee, but I just can’t seem to utter more than a few sentences without a cuss word or two popping out.  Popping, not pooping, although I do talk about pooping or not being able to alot also.

Last month, or the month before, I had to do a warranty trade on my smartphone, which in my opinion is Not very smart, although some would claim operator error. 😦

I have always struggled with the talk and type technology, because I speak quickly and do not enunciate.  This was proven when I asked my kids to “fix the damn phone” and they politely explained that I don’t enunciate when I speak.  To prove them wrong, I turned on the talk and type and said “ENUNCIATE”, the phone responded by typing E9C8!

SMDH AGAIN!

So now I have this ‘New’ smartphone AND I am cutting down on the number of cigarettes I smoke each day, in effort to quit on August 15, 2018, so needless to say I have been swearing a bit more lately.

After talking out a message that contained some “cuss words”, I forgot to turn off the talk and type feature on my phone before I said,

“It’s not duck, the word is fuck.  I really don’t understand your objection to ass, and on that note what the hell is wrong with shit or even hell?  It’s not like I used all the words in one sentence”

My phone typed….

” It’s not duck, the word is duck.  I really don’t understand your objection to ASK, and on that note what the he’ll is wrong with fit or even ****?

Immediately after reading that I said, “Bastard”, which for the record translated into “Last Turd”.

So I have decided to teach my phone to swear.  I have been correcting THEN saving each of the words that it misspells or ***** out.  So far I have added

piece of shit

fuck

shit

damn

hell

I cant say the C word, but it would probably come out as CANT anyway.

This morning I said, “I am coffeeing” which I know is technically not a word (its a way of life).  The phone typed doddering…which I left because I probably was.

Can you think of anything that I am missing?  When the day comes that I am finally ready to tell that ONE person that got on my last nerve off, I want to be prepared.

 

ME and my bag of PEE

I wrote last week that I was going on another “adventure”.  Maybe I shouldn’t have SAID anything?… Somehow MS found out that I am going away and decided that there was no way in hell I would be traveling without it.  GRRRRR

I realize that MS has a place in my life.  I make room and accommodate it’s demands all the time, but just ONCE I would like it to stay in the background a little more.

I should probably get to the actual point of this rant huh?

As I finished packing this morning, I had to pee again FOR THE 4th TIME IN LESS THAN AN HOUR!!!! Seriously?!?!  I just had PTNS last week, and Botox surgery in February for this.  I shouldn’t be having problems again this soon!

Thinking that it is  better to be safe than sorry, I called the doctor’s office.  They agreed that maybe I had a UTI and should come in to rule that out.  (yah for getting me in so quickly)…. Urine test complete, no UTI, but they still want to put me on antibiotics anyway, and suggested I use the Foley catheter for my whole trip. 😦

I am actually ok with having to use the catheter, lord knows I’ve been dealing with incontinence long enough, and who would want to have to pull off the interstate 4 times an hour for a 16 hour road trip?  The thing that stresses me out is having to deal with people’s reactions to seeing someone with a bag of pee strapped to their leg in public.

Well you could cover it up Grace?

Why?  So other people are more comfortable?  Not a chance!  The weather in Texas and Las Vegas is supposed to be in the 100’s, no chance in hell I am going to wear pants.  I have already given up half of my suitcase for incontinence supplies, medications, and such.  The only way I have half a chance in hell of surviving the heat is wearing shorts and tshirts or tank tops.  I had hoped to stay in/or by the pool while in Vegas, and I realize if I can’t get these symptoms to calm down I MIGHT have to give that idea up though :(… we shall see….

I’ve got this!…The only thing left is to come up with a name for my “companion”….Any suggestions?

 

 

I came back from Boston Wicked Smaaht

Ok that’s not even a little bit true, I’m still the same dumb ass I was before I went on the trip, BUT I did learn ALOT (good and bad).  It was definitely an adventure…..

If you’ve got some time I would like to tell you about it…..well about getting there and our first day in the city.

SOMETIMES the weather forecast is right

Before we left, I had been half listening to the forecast.  The forecasters said that we would be ‘blessed’ with a wintry mix of snow, sleet, and rain and temps of 26 degrees beginning 2 hours before we were to head out for the airport.   After sleeping 3 hours, I woke up at 1 am, showered, coffeed, and looked out the window.  Of course they picked THIS time to be correct….smh

We left Einstein’s house at 2 am, and headed to my house to pick Thing 2 up.  She was driving us to the airport.  (well I was driving us to the airport, and she was taking my car home)  That 20 minute drive took almost an hour….grrrrr

wintry mixok MORE coffee….(the American Airlines app, I downloaded on my phone said the flight was still on time, so we were doing this)  Driving to the airport sucked, since everyone forgets how to drive in the winter.  (It’s not like we haven’t had a long enough winter for people to relearn)  smh AGAIN.

When we got to the airport, Thing 2 ran in and grabbed a wheelchair for me.  I NEVER thought, I would be so grateful to have one.wheelchair  (Our trip hadn’t even started and I was completely exhausted.)

I won’t claim that it was perfect, but since I know the rating system affects the person driving the wheelchair directly, (he really was a nice guy) I did give the experience a perfect 😀 score on the “she has been delivered” tablet you have to sign when you are dropped off at your gate.

Security was a breeze

I probably shouldn’t say this, but the “trick” to getting through security quickly is having a bag of pee strapped to your leg.  The poor girl that had to do my pat down apologized so many times about having to “feel me up” and couldn’t comprehend what a foley catheter was, I don’t think she even noticed or swabbed the great stuff on my hands.  In hindsight, it is really scary that the people that are supposed to be providing our security are so afraid of “offending” someone, that they “overlook” certain things.  I hope I am wrong and they tested me some other way without my realizing it.  I assure you I will not be complaining to them.

Clear skies

Boarding the plane was also a breeze.  I did get a little nervous when the person sitting next to me started coughing,  (Oh no, not the plague again) but for supposedly being a full flight, she was able to move to another seat closer to other family members.  YAH ME!!  In fact, both seats next to me were empty!!!!  Double Win!  I took off my leather bomber jacket, used it as a pillow, used my sweatshirt as a blanket, and I was out.  🙂 I woke up a couple hours later in Boston, not quite fully rested, but refreshed nonetheless.

The airline had a wheelchair waiting for me as I deboarded the plane.  I didn’t get a picture of the woman driving (though I should have since she was also the one who helped me reboard on the way home and she was SO HELPFUL)  After taking us to the baggage claim area for my companions suitcase, I explained that  “according to my research” we were supposed to take the SL to the blue line and I needed to buy a ticket somehow.  “Oh no honey, you don’t need to buy a ticket, it’s all free”, she said.  Huh?  Nothing in life is free.

There are still some free things in the world

Transportation FROM the airport is free via the Silver Line and the Subway (as long as you don’t leave the station).  Who knew?!?!  silver lineWe boarded the SL1 which is an electric/gas powered bus.  It was electric leaving the airport, then temporarily shuts off to restart and run on gasoline…..WHAT?!?!?  Don’t laugh, I really had no idea such a thing existed….

We rode the SL to the end of the line and then tried to figure out which direction we needed to head on the blue line to get to our destination.

I must really have the “damsel in distress” look, because people were constantly coming up to me offering to provide help or direction.  A man and a woman (not a couple) even debated with each other which way would be easier.  The man said we should take this route…the woman directed her eyes to my cane and suggested that MAYBE, the orange line would be a better choice.  Orange line it is!.. The announcement said the the orange line would be approaching on the center platform….

Look BEFORE you leap

I heard “center platform” and crossed the tracks to head that way.  No I did not notice the train that was heading directly for me before I stepped onto the tracks.  Talk about your life flashing before your eyes….HOLY SHIT….(yah for the foley cath, since I think I would have pissed my pants without it).   No I didn’t get hit by the train, but I didn’t escape unscathed either.

Wait there is more….

So now I am standing on one side of the platform, my companions on the other.  The orange line pulls up and we need to be on that train, but how to communicate that?  I am using hand signals through the glass trying to tell them to get on the train as I proceed to board.  Once on the train, I don’t see them….Oh shit should I get off?!?!?  I try to step off the other side of the train to see if they are still on the platform, only to get my feet caught up in my suitcase or the cane and down I went.  20 minutes in Boston and I wipe out.  The upper part of my body is on the train, but my legs are hanging out the door and I can’t pull them up. 

I really am a train wreck (pun intended)

For the first time in my life, I am grateful that people don’t mind their own business. Someone pulled me into the train car just as my companions found me.  How the hell have I survived 44 years on this planet?!?  Have I mentioned GRACEful I am not?!?!still alive

I’m not done yet though…. not with my life or with this story….

We did make it to the apartment we were staying at to drop off our bags without any further mishaps.

We also found a great little pizza place.  regina

While we were eating we decided our next stop would be the Prudential Skywalk.

The UBER app can kiss my ass

Believe it or not, I did listen to the advice I was given before leaving that uber was the easiest way to get around while we were there, so I downloaded it to my phone before leaving.  After my “near death experiences” from the morning, I thought MAYBE now was the time to actually use it.  The app had other ideas.uber sucks

OH come on!!!!!!!!!  WTF?!?!?  How can it be disabled, I have never even used it before?!?!?  Visiting the website they sent me too was no help either…. Ok so back to the train…. If at first you don’t succeed try try again?  In fact I was more determined than ever to figure this “whole public transportation” thing out.  When we got back to the train station, I took a picture of the map (schedules had changed effective April 1st and new ones weren’t available yet?!?!)  I made a “new friend” who suggested that we buy a one day charlie card which would allow us unlimited use of the buses and trains throughout the city for 24 hours.

mbta helpmbta map

 

 

 

By the end of the first day, I was cold, tired, and completely worn the hell out…. but I CAN boast that I have become quite proficient at using the MBTA.  ( I still think that using a horse would have been easier)

homeless

IT RAINED ALL DAY!!!!!!  (at least it wasn’t snow though)

I took a selfie before crashing for the night.  I don’t know that I will claim damsel in distress, but definitely helpless, homeless, or in someone in need of assistance.

I’m not sure if I made an impression on Boston, but after one day, it certainly left an impression on me.

I will write more about our trip later this week,  not only did I come back from Boston with a semblance of a silly accent, but I also picked up a scratchy voice and fever 😦