How did your Interstim implant surgery go?

GRACE : I can’t tell you.

Wonderful friends: What do you mean you can’t tell me? Weren’t you there?

GRACE : Yes.

Wonderful friends: Have you noticed any difference?

GRACE : Yes, my back hurts and I am supposed to do nothing for the next two weeks.

Wonderful friends: What do you mean nothing?

GRACE : I don’t know the drug rep said don’t bend, twist, or lift anything over 10 lbs, no driving, no sex, don’t touch it….. So basically nothing!

Wonderful friends: Well what do you expect, you just had surgery?

GRACE : Yeah yeah, I’m gonna go do nothing…Thank you for asking, ttyl

Two days later

Wonderful friends: Are you feeling better today?

GRACE : What do you mean? It doesn’t hurt as much, but I can’t really do anything so I’ve been kind of grumpy.

Wonderful friends: Do you notice any difference with your symptoms?

GRACE : Nope! I don’t feel anything. I’m still waking up soaked. I don’t know if the device is on or what it is supposed to be doing. The doctor hasn’t even called me back to tell me if I can take a damn shower….grrrrr

Wonderful friends: When do you see the doctor again?

GRACE : TWO WEEKS!!!!! I’m gonna go, they sent me home with all these books to read and I should probably get started on that.

An hour later

GRACE : Incoherent mumbling

Wonderful friends: Why are you crying, did you try to do something you weren’t supposed to?

GRACE : BECAUSE I DON’T KNOW WHAT THE FUCK I JUST DID!!!! I feel like I have a fucking alien inside my body! I am terrified to move wrong so I don’t break or disconnect anything, what if I end up paralyzed?!?!?!

An MRI is like the biggest magnet we are ever gonna come into contact with right? So If it’s MRI approved, I should be good right?!?!?!?!?

Why does this book tell me to AVOID ALL MAGNETS…stereo speakers, computer disk drives, keep everything a minimum of 4 inches away from the implant!!!!! So I can’t carry my cell phone in my back pocket?

OH! And I have to shut it off before driving?!?!?!?!?!?!?!?

What the hell did I get myself into?!?!?! Why wasn’t this information available before surgery?!?!?

OH and it says NO skydiving, or things that could jostle the impant. Does that mean NO Horseback riding?!?!? High Altitudes should NOT affect the device?!?!??!

Can we just say I had a really bad couple of days? Maybe even a couple more melt downs. I FELT tricked, lied to, deceived….you get the point. How could I go in an MRI (remember really big magnet?!?!?!?), but I had to be afraid of a stereo speaker?!?!?!?

Once I calmed down enough, I came to the conclusion that this device was already in my body, so I should at least give it the benefit of the doubt. I went through each of the books that they had given me marking each page with questions. (I ended up with 2 pages)

Finally the time came for my post op appointment. I knew that the drug rep would also be there and even though, doctors weren’t allowing patients to bring anyone with them to their appointments ( smh covid) I NEEDED Einstein with me, so HE WAS COMING IN WITH ME!!!!!

I’m not sure if it was the xanax I had taken, the fact that the office didn’t fight me about bringing Einstein in, or the fact that while we were waiting to see the Dr.we began talking to another patient that had also had the same surgery, (but for different reasons) but by the time we were shown to the exam room, I began to relax.

So far I have written about my emotions concerning this surgery. Emotionally, I did not do well. Do I regret getting the Interstim? Honestly it is too soon to tell. I DO however, regret that I didn’t meet with the Medtronic Representative BEFORE surgery. I WISH, I had seen the device, and all of the equipment that comes with it…but that’s on me.

Our conversation with the doctor and the representative lasted over an hour. I will continue to write more about my experience in the future, but I don’t want to leave you with any misconceptions…. Here are some points that were explained to me.

  • The interstim leads were NOT placed in my spinal cord, but by my sacral nerve. (meaning the device should not paralyze me, if I do get a shock)
  • The warnings concerning magnets is that they could turn the device off, but will not cause it to pull out of my body
  • Flying in an airplane is safe (I hope) and I am allowed to go horseback riding after I give everything more time to “settle”.

I’m am still nervous and anxious, but I’m no longer terrified. As I mentioned before, this device is already in my body, so I should at least give it the benefit of the doubt.

On second thought….

About a week ago, I wrote a post called “saying goodbye“. My credit card was billed $94.00 for a word press subscription that I wasn’t using, so I figured it was a good time to cancel. After posting said post, several of the friends I have made on WP advised me that WP had free version and I would only need to pay $18.00 a year to keep my domain name msgracefulnot.com. Hmmm ok that I could do, so I took down the Saying goodbye post, cancelled the paid subscription, and here I am.

Thank you again to those of you that reached out to me!!!!!

Why I stopped using Word press

For the greater part of last year, I made the conscious choice to avoid social media as much as possible. My personal plate was full and I couldn’t deal with all the negativity, fear, and hate being passed around between people. I saw sides of people that I could not imagine they were capable of, so after writing, Say what you mean, and mean what you say, I pretty much “disappeared.”

When I created my blog, my original intention was to provide PROOF that with the right amount of determination, creativity, and humor you can survive almost anything.  I wanted to help anyone that was feeling alone or overwhelmed with their lives, to see that they were not alone.  I believe that on many occasions I did that.

  1. I have written about  being diagnosed with Multiple Sclerosis. 
  2. I’ve written about choosing a disease modifying therapy.
  3. I’ve written about how insurance companies like to “play doctor”.
  4. I’ve written about my children and not winning the mother of the year award.
  5. I’ve talked about air travel with MS.
  6. I’ve talked about Train travel in a wheelchair.  and the importance of knowing your equipment and your limits.
  7. I’ve talked about being full of shit.
  8. I’ve shared some of the treatments for bladder incontinence and urge incontinence due to MS.
  9. I’ve shared some of my most painful moments.  (Mentally and physically)
  10. I’ve shared some of my happiest moments.

I mentioned earlier that I’ve had a full plate this year, but I’ve not been at all specific. There are multiple reasons for this.

In some instances, the stories I want to share, are not entirely mine to tell. For example, both of my parents are going through life changing medical issues. I can tell you how it’s been affecting me, but I’m not sure how much is TOO much to share. I’m still working on this.

Another reason for the vagueness is because the “jury is still out” about many of my health issues. While I can share what I have been experiencing, and why I’ve been doing what I have been doing, I still don’t know if my decisions were the right ones to make, so I don’t want to lead anyone astray if they are dealing with anything similar. I will work on this as well.

In the meantime, I would like to reintroduce myself, and invite you back into my world. If you are joining me for the first time, my About Me page, is a good place to start. (I wrote it a year ago, but I believe most things still apply.)

When I thought I was leaving wordpress, I was trying to think of a way to “go out with a bang.” I began creating a “contest” to attempt to draw everyone in, one more time. It has occurred to me, that I can use the same contest to “Come in with a bang”, or “get back in the saddle if you will.” Giving away prizes, opens the door to discussing some of the positive things that I have been doing over the last year as well.

On Wednesday, September 2nd at 9 am Central Time, I will post a list of questions about myself, or things I have written about in this blog. I do believe that most of the questions can be answered by reading the posts that I have linked above. (if not THESE posts specifically, the answers will still be available within my website) The prizes will go to the first two people that post the most correct answers to my questions in the post “How graceful are you?” in the comments section of that post no earlier than Monday September 7th @ 9 am central time and no later than 3 pm Central time of the same day.

I hope you will all participate. See you soon!

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.

 

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?

 

 

Maybe I should start wearing pants?

It probably won’t happen, but MAYBE… I should?

As I was getting ready to leave for my doctors appointment last week, I slid a pair of sweats on, and both of my dogs went to the door looking at me expectantly….“Where we going mom??!?!”  Note I did say SWEATS,  as in sweat pants, NOT my shoes, or coat.  The simple act of putting on my pants told my dogs that  I was leaving the house?!?!?!?

dogs at the door

If you are a dog owner you have probably experienced this before when putting on your coat, or shoes, or whatever your “routine” is as you get ready to leave the house.  Admittedly though, I think for most people it is putting on your footwear.  This morning mine did it when they saw my pants in my hand??????

Ok time for a test.  The next day I put my tennis shoes on to walk on the treadmill, and received absolutely NO REACTION from the dogs.  Normally shoes would symbolize that you are getting ready to leave, but literally  NO RESPONSE!!!!!

a dogs life (probably because I wasn’t wearing pants)

Later that afternoon, I remembered that I needed to take the garbage cans to the curb.  I grabbed my sweats, and again BOTH DOGS ran to the front door…..smh  Seriously?!?!?  I literally laughed out loud. 

How do your dogs react when they think you are leaving the house?

MORE Tests….

Do they only do that when I put on sweat pants?  Would they react the same with Jeans or Leggings? Are they doing that because I chose to come out to the living room to put my pants on instead of my bedroom?

After a week of changing variables, I have concluded that when my dogs see me with pants on they think we are going somewhere.  ANY KIND OF PANTS!!! My “poor dogs”.

So now what? Stop taking them with me everywhere so they don’t think they get to leave the house when mom puts clothes on?  dog lifted into the carDo I have to start wearing pants all the time? Or do I just laugh it off and be happy that I am as important to them as they are to me?

The bond animals have with their humans is incredible.  I found another picture this morning of all 5 of my animals, (2 dogs and 3 cats) refusing to leave my bed after I had back surgery a few years ago.  Thing 2 literally had to drag them out of my room to feed them and take them outside to relieve themselves.

D.O.G. Waiting to be lifted into the car….not at all spoiledanimals after surgery (2)

I should probably mention at some point why I don’t wear pants.  Its simple really, I don’t like clothes, BUT ESPECIALLY pants.  The only reasons I wear clothing have to do with warmth and to portray some illusion of modesty.  (Ok I also don’t looking at my belly, which in my opinion makes me look several months pregnant)  Remember, no core muscles?!?  However, I am going to blame MS for this one.  While some areas of my body have lost “feeling”, ( like drop a 500 lb weight on my foot and I wouldn’t flinch), others have become SUPER OVER sensitive.  My left leg is an example of this.  When my pants move against my leg, it feels like bugs are crawling all over it…. EWWWW!  Very creepy!  Not to mention uncomfortable.

The second reason I blame MS, is bladder and bowel urgency.  I have rushed to the bathroom too many times to count and “not made it” just because of my inability to remove my bottoms quickly enough, so you see it’s easier to just not wear any, at least that’s what I will keep telling myself until the next embarrassing or “questionable” thing happens …. like my kids bringing friends home unannounced and yelling, “Mom?!?!?  ARE YOU WEARING CLOTHES?!?!?”…. smh.

I am sure my dogs will survive just as my kids did, but in the meantime I chuckle.  I hope you did too!

 

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