A post a day APAD Day 20 Up in the Air again?

Leaving on a jet plane

At the end of March 2020, just as the world began to lose it’s fucking mind because of Covid, Thing One, her husband, and my twin grandsons moved to Colorado. (that’s another story for another time though) From that time, until May of last year, I have been flying or driving (mostly flying) to Colorado every 6 weeks to see them. The last time I was there was for Halloween last year. I was supposed to go again the 2nd week of December, but at the last minute decided to try to cut the tip of my finger off. ( Again another story for another time. )

When this post goes live, I SHOULD be on the airplane on my way to Colorado. Please cross your fingers all is going well!

As much as I have been traveling, you would think I would be a pro at it by now. The only things I can almost guarantee about the day is that:

  1. It will be a long one
  2. the rules will have changed from yesterday
  3. the waiting times will be enormous
  4. some one some where will cause a scene about something
  5. it will be different from my last flight
  6. I am sure that I will be using YAIS

Update**** on the ground safely. Truly the best travel day I have had in a long time. Not one instance of yais. Two infants that slept the whole flight. Almost no lines for anything. In The fact the only thing I was correct about is that it will be a long day and it would be different than my last flight

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?