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.

Being a Human guinea pig

A quick search of Google defines A Human Guinea pig as “something you experiment on. When someone calls himself a human guinea pig, he means he tested a theory or method on himself.” When someone allows themselves to be a human guinea pig in the medical community, they allow doctors and/other so called experts to experiment on them.

Why would anyone allow themselves to be a experimented on?

While I can not speak for others, I can tell you the reason I DID was out of desperation. I have never been good at taking no for an answer, or hearing there is nothing else that can be done. When I was in my mid thirties I had reached my breaking point regarding urinary incontinence, urgency, and retention.

A little bit of history

My bladder issues began when I was around 28 years old. I would have the urge to urinate so strongly that I would leak, yet I would end up sitting on the toilet unable to void even a drop of urine on my own. After trying for several minutes, I would stand up, begin to redress myself only to start leaking again. These leaks were not small drops. Next came wetting the bed. (Ironically this occurred at the same time I was potty training my daughter) grrrr

Time to see a urologist

The doctor came in to the room, literally shrugged his shoulders and muttered, “You have MS, and you’ve had a hysterectomy, what do you expect?” He said, “there is nothing that can be done”, and left the room. I was shocked and outraged.

Urologist Number 2

After “licking my wounds”, I made an appointment with another urologist who I immediately lied to. I purposefully omitted the fact that I had a hysterectomy and MS when filling out my patient forms. After the doctor performed a post-void residual, (a test that measures the amount of urine left in the bladder after urination with an ultrasound.) and they questioned why I had no uterus, I was “busted”. The tears that I had been holding back for months rushed from my eyes as I began to choke out my apology and an attempted explanation for my omissions. Thankfully he was very understanding of my desperation. He sent me to an office at the hospital to learn how to self cath.

I have been doing this ever since. I have tried every Anticholinergic on the market with limited success from each. I’ve have had urodynamics testing performed numerous times. I have gone through bladder retraining and pelvic floor therapy. I have restricted my fluid intake to the point of dehydration. All of these things “helped a little” but not enough, and not for long. Finally, urologist number 2 referred me to a specialist at Loyola University Medical Center in Chicago.

Introduction to being a guinea pig

After meeting with this specialist and undergoing urodynamics testing again, she informed me that I had exhausted all forms of approved treatment for my conditions. Fortunately though, the hospital was currently seeking patients to enroll in the study of Botox treatments for Urinary Incontinence. I would even be paid to participate in the study if I was interested.

I can, and may at a later date, write an entire post about my experiences while being involved in the study, but at this time I am simply going to state the the treatments were approved.

For the last several years, I have been receiving botox injections in my bladder. During the trial, and for the first year or two afterward, every three months, I would drive an hour and a 1/2 into Chicago to have this performed . The procedure was done in the doctor’s office with the whole thing taking a little over an hour. Here is a link to the drug company if you are interested…. Botox treatments for bladder incontinence.

I was on top of the world! I still had to self cath, but I was rarely leaking anymore and I could go hours in between bathroom breaks!!!!!!!! No more poise pads, wearing depends or constantly feeling that I smelled like urine!!!! Botox worked great for me, until it didn’t.

The doctor at the university told me that most of her patients could go 9 months between treatments, and she refused to do them any more frequently than that. Research from the drug company stated that recommended time between treatments is 6 months although, they could be administered as frequently as 3 months. Feeling “normal” for 3 months and then “regressing” to leaking, pad and depends wearing was not an option for me. So the search for a new doctor began.

It took me more than a year to find a doctor that was willing, and able to perform the injections more frequently, but even he was not comfortable with doing them more frequently than at 6 month intervals. Also, he could not perform the procedure in the office, like I was able to at Loyola. I would have to receive botox at the hospital in an outpatient surgical procedure. If you would like to read my vent about it having to be surgery, please bookmark, “you’re getting botox where?”.

During my initial visit with my current urogynecologist, let’s call him Dr. S. , he informed me about a ‘newer’ treatment that was being used to help manage OAB or overactive bladder called the Interstim by Medtronic. The problem was, the device was not safe for use in MRI’s. (Until recently, I have had to have MRI’s yearly to remain on Tysabri. Now I have to have them every 4 months, but that is another story.) So having the Insterstim implanted was not an option for me BUT….

The same company that developed the Interstim, developed a treatment called PERCUTANEOUS TIBIAL NEUROMODULATION or PTNS. Their website provides this information about the procedure if you are interested.

MEDTRONIC BLADDER CONTROL THERAPY DELIVERED BY THE NURO™ SYSTEM

  • Known by doctors as percutaneous tibial neuromodulation (PTNM)
  • Targets the tibial nerve above the ankle
  • Does not require a programmer
  • In-office therapy
  • Starts with 12 weekly, 30-minute sessions followed by maintenance treatments every three to four weeks
  • Used to treat the symptoms of OAB but not retention
  • Does not cause unpleasant side effects like oral medications can2
  • Ideal for people who can’t tolerate surgery

I’ve also posted this video on my Youtube channel showing how PTNS is performed.

So again for the past several years I have been somewhat successfully able to manage my bladder issues, with a combination of PTNS, frequent self catheterization, and surgery to receive botox injections every 6 months. Some time during the last year though, I have begun waking up soaked almost every night or having to sleep with an indwelling catheter, in spite of having all these treatments.

In October of last year, Dr. S told me that Medtronic had come up with an Interstim device with Surescan MRI SAFE leads and was just waiting to be approved by the FDA. In February, it was still not approved, so I had botox surgery again. Maybe this is the last time?

Each month when I went in for PTNS, I asked Dr. S if the FDA approved the device. Each month he told me, “not yet but they are close.” I would grit my teeth and tell him I would see him in 4 weeks. When I was at my appointment in July, Dr. S surprised me when he came in to the room and announced, “We are going to go ahead and schedule you for surgery next month”. “Seriously?!?! It’s really been approved?!?!?” No, not yet, but they are saying any day now.

Surgery was scheduled for 8 am on August 19th.

I got a call from their office on August 12th, stating that it had finally been approved and surgery would go on as planned. Talk about nerve wracking!

On August 19th, 2020 I had one implanted.

Enter the “How Grace-ful are you?” Contest

MS Graceful...NOT!

Grace-ful- knowledgeable about Grace Fullnot or msgracefulnot.com

On Saturday evening, I mentioned that there would be a contest today. In case you did not see the previous post, let me explain the terms here.

  1. Please do not post any answers to the questions until Sunday, September 6th between 9 and 3pm central time so that more people have a chance to enter.
  2. When answering a question, please include information as to where you found the answer (post name, guess, etc) *If you have the time, this part is not necessary to win.

Here are the questions:

  1. How old am I?
  2. Why did I select msgracefulnot as the name of my blog?
  3. How long have I had MS?
  4. What is the “address” of my advice to those diagnosed video?
  5. What is the name of the disease modifying drug I am on for Mulitple Sclerosis?
  6. How do I refer to my daughters…

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Enter the “How Grace-ful are you?” Contest

Grace-ful- knowledgeable about Grace Fullnot or msgracefulnot.com

On Saturday evening, I mentioned that there would be a contest today. In case you did not see the previous post, let me explain the terms here.

  1. Please do not post any answers to the questions until Sunday, September 6th between 9 and 3pm central time so that more people have a chance to enter.
  2. When answering a question, please include information as to where you found the answer (post name, guess, etc) *If you have the time, this part is not necessary to win.

Here are the questions:

  1. How old am I?
  2. Why did I select msgracefulnot as the name of my blog?
  3. How long have I had MS?
  4. What is the “address” of my advice to those diagnosed video?
  5. What is the name of the disease modifying drug I am on for Mulitple Sclerosis?
  6. How do I refer to my daughters in my blog? Can you tell me why?
  7. Which of those sweet little demons did I leave at the store?
  8. Name at least 3 places I have traveled to via plane in the last 2 years.
  9. How many times have I been in a boot for a broken foot? (this is a trick question, even I don’t know the answer)
  10. What is the most annoying symptom of MS that I deal with? Please list at least 2 treatments I have tried.
  11. Do you remember my German Shepherds name?
  12. One of my happiest memories from 2018?
  13. What do I call my significant other?
  14. What are my grandsons names?
  15. Do you remember how we met or how you found msgracefulnot.com?
  16. What is your favorite post that I have written?
  17. What 2 three letter words, or acronyms, internet slang do I use the most? Can you tell me what they mean?
  18. Bonus points if you share this post on social media, and share the location you posted to!!!!!!
  19. This is a “freebie”… If you are a blogger, can you create a post with links to past posts you that you have written that you feel would give a new reader a good sense of what your blog is about? If you do I will share the hell out of it….FREE ADVERTISING HERE!!!!
  20. If you are the winner, which rose would you like? With or without stem?

The winner will receive their choice one of the above pictured roses that I printed with my 3d printer mailed directly to their home or office. (more about 3d printing to come)

Thank you in advance for stopping by!

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!