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.

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!

Say what you mean, and mean what you say

Here’s a novel idea…. Say what you mean and mean what you say.  Don’t have anything nice to say?  How about don’t say anything at all?

I am so tired of all the anger, meanness, and blame that some people are spreading in the world today.  I understand that fear and pain can bring out the worst in people, however that is NOT an acceptable reason to be cruel.

“But he/she did it first”?!?!?  What are you five?!?!  “Well everyone else was doing it!!!”  Ever hear the story about jumping off a bridge?  While I think my parents are incredible people, they are mere mortals, yet somehow they made sure I learned that two wrongs don’t make a right, and jumping off bridges because friends did it are NOT very good behaviors to practice.

Many people hide behind this “invisible shield” when they post things online.  They suddenly develop “balls of steel”.  Why is that ok?  And the name calling?!?!?  Seriously?!?!?

Because several states/countries that have been experiencing some form of “lockdown” due to Covid-19, are thinking about “reopening” or limiting restrictions that were placed on their citizens this week several people have been attempting to discuss their state or countries decisions.  I personally have been asked my opinion no less than 20 times.  Regardless of the specific question asked, my reply always includes the statement, “I am not afraid of getting the virus, (If it happens it happens) however, PEOPLE AND THEIR ACTIONS are scaring the hell out of me.

For the past 5 months, I have had a somewhat different (imo stricter) set of  restrictions placed on myself than most people have in the United States.  I have been mostly ‘confined’ to a wheelchair.  I couldn’t simply go for a walk.  I couldn’t drive myself to get groceries, or something that someone else cooked for me.  My outdoor excursions have consisted of visiting my doctor’s office, or the hospital for things that could not be completed online or over the phone. I bring my own restrictions up because I can honestly say I have not been an asshole to anyone.  I have not posted one cruel or hateful thing to anyone, but by the standards being accepted in society I would be ok if I did?!?!?  I don’t get it!

Yes I have felt alone and sometimes depressed, but NOW I am getting scared.  Scared that I am starting to dislike a lot of people.  Scared that if left to their own devices people will destroy themselves.  But mostly I am scared that I have started to believe that I will start handing people the rope.  (give “them” enough rope and they will hang themselves)  Isn’t that terrible?  I don’t want to become one of THOSE people.  (The ones that I am complaining about)

I strongly believe that you should practice what you preach, so I have been “quiet”.  I have been avoiding social media.

Maybe I have been “quiet” too long?

If you are not part of the solution, do NOT be part of the problem.