Living with Interstim 3 months post op

Back in August of this year, I had the Interstim bladder stimulator placement surgery. In September, I wrote about my journey with Bladder Incontinence in a post called, Being a Human Guinea Pig. A few days later, I wrote a sarcastic, yet honest post about what I was going through mentally after having the surgery. At the end of that post, How did your Interstim implant surgery go, I said that the device was already in my body, so I should at least give it the benefit of the doubt. I have, and I would like to share.

Did the Interstim Device “fix” me?

NO

Did it help reduce my symptoms more than 50%?

Absolutely!

Do I regret having the procedure?

No

Would I recommend the Interstim device to someone suffering from Incontinence?

Honestly, I don’t know. ( Not very helpful am I?)

Maybe this will help

On a day to day basis, I don’t even realize that I have the implant anymore. By this I mean, I don’t really notice it unless I am looking for it. I don’t feel any pain at the incision site while I am sitting, driving, walking, bending over, etc. I use a leg press machine for physical therapy and have not had any issues with that amount of pressure against my back side either. I have to admit that I do miss the “ass pats” (spankings?) that Einstein used to loving provide, but to be honest we are both a little nervous about that experiment.

I did not die in the MRI

I was very anxious about having my quarterly MRI last month, (another story for another time) but after finding a location that had the equipment and experience to perform MRI’s on patients with implanted devices, my anxiety about my body being ripped apart while in the tube has been relieved. As a bonus, the pictures from the MRI model that they have to use are 1000x better than any of my previous 100 scans!!!

Going through Airport Security with an implant

I am pleased to report that I also did not die while going through airport security at O’hare or Denver airports. (I did this two times just to be sure.) Medtronic supplies you with a card stating that you have an implanted device and can not go through the metal or magnetic detector. You can also always ask to have a pat down from TSA, but I had no trouble standing in the usual “stand still here and put your arms above your head” scanner.

Other horrible things that did not happen

The above list had me terrified, but to date I have done the following and have had no issues:

  1. Driven a car without turning it off
  2. Operated power tools including a drill and a saw while standing on an aluminum ladder
  3. I carry my cell phone in my back pocket (over the device) for 90% of my waking hours
  4. Operated all household appliances including the washer, dryer, dishwasher, microwave, vacuum cleaner, freezer, computer, television, security system etc
  5. I have been to the dentist with my 2 year old grandsons, not as a patient

What HAS happened after having the device implanted?

Most of the time, I am able to hold 400-500 ccs of urine before leaking. (pre interstim and without Botox surgery, the number was closer to 150 ccs) I still have to use a catheter to empty my bladder completely, but am actually able to “pee a little” on my own (if that’s a thing). *Drinking Alcohol changes those numbers. Beer seems to run right through me. The carbonated or hard selzer drinks ( Vizzy, white claw, corona) seem to move a little slower, but still increase frequency and decrease retention.

The only other change

I have to “recharge” the device once a week.

As you can see, the recharger is about the size of my hand. Also in the picture is an elastic belt that you can put the charger in to wear while you are moving around. The Medtronic website shows a woman gardening while wearing her belt. Yay her! (This doesn’t work for me.) I have found that I have the best results and shortest charging time, if I sit at the computer, put the device under my underwear and don’t move for a half hour or so. For some reason, when I am re-charging, my right foot (the one that has that all the titanium in it gets very warm)

While uncomfortable, its not incredibly painful. Maybe it’s a coincidence? Maybe that is where the nerve that is being stimulated ends? I’m not sure. I could also turn down the charging speed, but it takes twice as long to charge and sitting still IS difficult for me.

If you are reading this because you or someone you care about it considering getting the Interstim, I wish you the best of luck. Only you can decide if it’s right for you. DO YOUR RESEARCH!

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!

Wheelchairs are NOT the enemy?!?!

Over the years, my views on wheelchairs have run the full gamut.  When I was a little kid, they looked SO cool and were FUN to play in/with.  (Wheelchair races, wheelies, etc)  As I got older, and was diagnosed with Multiple Sclerosis, the threat of being confined to a wheelchair terrorized me.  The keywords here are THREAT and CONFINED.  All I could focus on were the things I wouldn’t be able to do, instead of the additional things that using a wheelchair could help me do.

I’m not saying that I am excited about being in a wheelchair AGAIN, or that you should rush out and buy one, but after having to use a wheelchair many times over the last 20 years, I can FINALLY acknowledge that in some ways it makes my life easier.

Some examples include:

  1.  Airports-  Using a wheelchair allows me to continue traveling.  My legs have become so much weaker over the years that even a “quick run” to the grocery store wears me out and makes falling more likely.   The long lines and distances at the airports would make it very difficult if not impossible for me to fly.  I have written numerous times about traveling in a wheelchair via plane and train.  Air Travel with MS- Use the tools available, Just the Facts Please, and Your mission should you choose to accept it are a couple examples if you are looking for more information.
  2. The Risk of falling is minimized-  I can’t say that the risk is eliminated, (Have you met, Grace?) but it is definitely smaller.  Full disclosure here-  I launched myself down the steps of my parents porch the other day because I got  impatient and was resisting the help that was offered.  😦
  3. I can move faster.  I’m not talking about using a power wheelchair, although you really can haul ass in those.  I’m talking about general everyday tasks.  I “roll” faster than most people can walk.  In the beginning, I didn’t have much in the way of endurance.  My arms got tired quickly. The more I push myself though, the stronger my arms are becoming, which in turn is making other “everyday tasks” easier to do.

Finally, and best of all….it allows me to hold and move with my twin grandsons.  Again, I don’t have the risk of falling with them.  I have an “auto rocking chair”, which they think it’s cool as hell.  When I am rolling around or backing up, I make noises like a race car or a construction vehicle backing up… Beep beep beep….

Thanks for reading along today.  What are your thoughts on the use of wheelchairs?  Can you think of any other way they can make your life easier?

 

 

 

Leaving your phone in a Lyft driver’s car

I walked into the hotel room at 12:30 am to drop off my bags and to park the wheelchair.

How do you reach your Lyft driver if you forgot something in their car?

When I walked into the room, “T” was awake, and still fuming about the height of the bed.  I unburied my tablet and asked T to use her phone.  Actually, I don’t think I asked, I think I just said I was taking it.  She  continued to complain about the hotel saying I needed to talk to the manager.  I put my hand up and said,  “we need to be awake at 4:30″, I can’t do this now.  I have to find my phone, or I won’t be going anywhere tomorrow”.

I headed back outside with phone and tablet in hand.  I sent several text messages to my phone hoping the driver might see them on a pop up.  I called Thing One to tell her that I had lost the phone and maybe I needed her to put a hold on it.  (My family each pays her $50.00 a month and we share unlimited everything on her account) I asked her to find a phone number for Lyft to report the loss.

She responded with the following screenshots:

This is all good in theory,   If you know your passwords.  I don’t!  My niece set up the Lyft app on my phone during my Boston trip over a year ago.  Crap ! Crap! Crap!

I filled out the Contact Lyft form using the hotel’s phone number and my email address for which I also don’t know the password.

ARGH!!!!!!!!!!!!!!!!!!!

I suspended myself from most of my accounts trying to guess the passwords.  Those that didn’t suspend me, sent a verification email to my LOST cell phone. SMH!!!!!

Just as I was going to surrender… I remembered that my neighbor works nights…maybe I could call her?   IF only I actually knew her phone number instead of only having it stored in my phone?!?!?!?

Ah but wait a minute…we are friends on Facebook..and that is the one password I remember.  I sent her a message on Facebook messenger asking for her phone number and then called her from “T’s” phone.  It’s probably a sad thing that she wasn’t surprised in the least that I needed “bailing out”.  I asked her to go to my house with her key, and I would tell her where to find my list of passwords.

When I logged into my email account there was a message from Lyft that the driver had found my phone.  Somehow I was able to contact him and beg him to bring my phone back to me.  Lyft charges a $15.00 returned item fee.  I paid that and tipped him $20.00.

At 3:15 a.m. I finally crawled into bed.  Exhausted

At 4:45a.m, there was a knock on the door.  It was the front desk guy Brent.  He had spent most of the night/morning outside smoking with me while I tried to get my phone back.  He promised that if he didn’t see me surface from the room by 4:45 he would “bang” on the door.  He had also set up coffee and set out some of the cold breakfast items even though they don’t start breakfast until 6.  Yes I wrote an outstanding review for him and the hotel.

Grace: “T” We need to get going

“T” (from the bathroom), I’m working on it.  I’m gonna need you to help carry some of my bags.

Grace:  Growl….BAGS?!?! As in multiple?!??!?! How am I supposed to carry anything while I’m in a wheelchair?!?!

LOTS of cuss words

probably even a few more

I don’t even remember her response.  I loaded all 3 of her bags and my one bag onto the wheelchair and headed to the lobby to arrange the LYFT.

I’m going to insert a copy of the review that I left for Rosebud Taxi Service which explains in more detail how we ALMOST missed our train.

I am from the Chicagoland area, where Lyft’s are frequently used and also usually readily available. I made the poor assumption that they would also be readily available in Holland, MI. While I was able to use their services from the Amtrak Station in Holland to my hotel where I was staying, I was unable to locate a driver to get to the station at 5:30 in the morning. My companion and I were both traveling in wheelchairs, so I began requesting a ride using the lyft app at 5 am even though we did not need to be at the train station until 6:30. From 5 to 5:45am I could not find anything. At 5:45, our hotel receptionist had found the number for Rosebud Taxi Service. I called and explained our situation to a very nice gentleman, who not only apologized profusely that they wouldn’t be able to help with both chairs on so short of notice, but also gave me a phone number for a competitor who might be able to help. Who does that?!?! Wow! After speaking with his competition, I don’t think they are any competition at all, their response to my dilemma was, “sorry nope nothing we can do.” I went back to trying to obtain a ride from lyft, only to have the one driver cancel the ride because in his words, “I’m 20 mins out for a 4 minute ride, not worth my time.” I did explain that we would tip very well and would probably have to be transported separately. He said, “ no I’m cancelling.”
I think I literally cried to my companion to please call rosebud back while I continued to try to use the Lyft app with no luck. After explaining our tale of woe again, the owner of the company stopped what she was doing in her personal life and came to pick us up herself with a vehicle large enough to hold both of our wheelchairs. I have to ask again, “Who does that?” I am so grateful that there are people in the world who will still go the extra mile to help “rescue” someone in trouble. I truly feel that she “saved” us. It is also important to note that she didn’t charge us any extra for our additional “luggage or needs”. I wholeheartedly give Rosebud Taxi Service 5 stars and would recommend them to anyone!

I didn’t feel it necessary to add that the owner and T could/did not help me load the wheelchairs or luggage into the SUV.  BUT that’s when the BREAK happened. Everything happened in such a rush, I honestly don’t remember the exact point it happened.  Maybe I dropped one chair on top of the other?  Maybe I closed the seat on my finger?  In fact I am sure I did both of those things.

In the short 10 minute ride to the train station, my finger turned black.  Oh shit…. The ONE thing Einstein said before I left, “DON’T BREAK ANYTHING!!!”.  There was no doubt that it was broken :(.  Didn’t matter though, we had a train to catch.

I didn’t even try to use the wheelchair other than for baggage on the way home.  The fact that “T” was able to though without the use of her legs also supports that it is doable.

In closing, other suggestions I have for traveling alone in a wheelchair are:

  • pack as light as possible
  • print your tickets etc Do NOT rely on your phone
  • TRY to get some sleep.  (I’m pretty sure the 1 hour I got is what lead me to getting sick when I got home)
  • Plan for back up options should your original plans fall through.  (multiple transportation and hotel options.)
  • Know your limitations
  • Call your hotel or transportation method to check heights, dimensions etc.  It would not be unheard of to ask for pictures of your accommodations before committing.

As a side note, while the ADA suggests a bed height of 20-23 inches in handicap accessible rooms, although, it is NOT a requirement.

0726192149a