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!

Advertisement

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.

 

Balls of steel or no ‘common sense’?

Maybe you can help me to decide?  My roommate came home the other night and told me a story that in addition to causing me to laugh my ass off, also caused me to wonder if she has balls of steel, or is just lacking common sense.  I would like to share the story with you, and hear your opinion.

It was about 10 pm on Friday.  My roommate had just gotten home from dinner with her friend, and I was eager to show her the scrapbooks that I had been making to occupy my time.  I ‘rolled’ into the kitchen and saw what I knew all to well to be a speeding ticket.

Words came out of her mouth that I honestly believe she’s never uttered.

I thought to myself, “Maybe NOW is not the time to say anything”.

As I turned the chair around heading back to my side of the house, that little devil in me popped out and loudly stated, ” I know what this is, was someone a bad girl tonight?”

With in minutes I saw a new side of my normally soft spoken, laid back, go with the flow roommate.

 

When I heard the words, “I have NEVER gotten a ticket in my life”, I burst out laughing.   It was inappropriate I know, but considering the fact that I have gotten almost 2 speeding tickets a year since I started driving, maybe I was in shock? I didn’t think it was possible to have NEVER gotten a ticket.

When I stopped laughing I said, “Hey it’s no big deal.  Just pay the ticket and an extra $40.00 to take a class.  They will put you on supervision and it won’t go on your record”.

I don’t think she even heard me.  She continued ranting about the incompetence of the officer.

“Whoa whoa, slow down, hold on a minute. Start at the beginning”, I said.  (I was having an incredibly hard time NOT bursting into laughter again.)

I’m going to attempt to repeat the conversation as she told me.  I apologize in advance for the poor grammar and punctuation.

She said,

I was on blank and blank road on my way home, when this cop comes out of nowhere and turns his lights and sirens on.  I pull over to the side of the road and wait for FOREVER until he comes up to the car.  The first thing he asked me is where I was going.  That’s none of his business and I told him so!  Then he asked me where I was coming from.  I told him that was also none of his business.  I asked him, “What do you want and why all these personal questions?  Would you like it if I asked YOU all these questions?!?!  He didn’t answer MY question, but instead said, “Do you know you were speeding”?  I replied, “How do you know I was speeding?  I would like to see your gun thing.”  (radar gun) HE TOLD ME I COULDN’T!!!  I asked him how fast he thought I was going.  HE said 65 in a 45.  That’s just ridiculous I told him, and where is the speed limit sign anyway, I asked.  He said it was posted before the last stop sign.

She continued to argue with him about the placement of the sign.  He asked her for her driver’s license and went back to his car.  When he came back, she blasted him again.

She told him that both her father and her brother were cops for over (I don’t remember how many years) and in addition to asking for her driver’s license he was supposed to ask for her insurance and registration cards.  He again asked her where she was coming from.  After telling him that he had already asked her that, she picked up her carryout box, shook it at him, and said “I already told you, I am coming home from dinner with a friend.”  She advised him that she doesn’t drink, but that he could give her a breathalyzer if he actually knew how to do that.

He took her cards and went back to his car.  When he returned, he handed her the cards and a speeding ticket.  He told her that the fine in Illinois for all tickets was $165.00 and walked away.

I am sure there are parts of the story that I have forgotten.  I am honestly still shaking my head.  I told her that she should have an envelope with information about paying the ticket and applying for court supervision.  This launched her into another rant.  “He didn’t give me anything, but this stupid ticket, and a lot of attitude.  I have never been treated so rudely and I told him so”!

As I am laughing again, I am going to end the story there.  Does she not realize he could have taken her in, at least overnight, for so many reasons?  Does she not know that all of conversations are recorded?  So many questions, but most importantly…does she have BALLS of STEEL, or is she lacking common sense in this department?

 

 

 

 

 

Bathroom issues of a new variety…

If you have spent ANY time around me, you know that I have many, many bathroom issues/stories.

I ALWAYS have to know where all the bathrooms are everywhere.

I may not be able to tell you the name of the street we are on, but I can almost guarantee you that I can tell you the names of most of the businesses that have a public restroom AND where it is located.

I’ve made friends in bathrooms.

I’ve been in a couple of fights in bathrooms.

I’ve also broken up fights in bathrooms.

I’ve ….maybe you don’t need to know EVERYTHING I’ve done in the bathroom.

Anyway,  I’d like to tell you about my latest ‘bathroom adventure’ for no reason other than I hope to make you smile, maybe even chuckle a little.

Setting the stage:

 

As you may know I am current in a wheelchair.

Because it is hopefully not a permanent situation, I have been lax about buying or building a Ramp to cross the 3 inch drop into my bathroom.

 

As you can see, the toilet is a long long way from the door.

In the beginning of my “adaptation”, I would park my wheelchair at the door, then use crutches to make it across the floor to the toilet.

That worked fine until the one day, I slipped….

(I’ve fallen and I  can’t get up)

So NOW I have a second wheelchair parked IN the bathroom.

 

 

To recap, I wheel my primary chair to the door.

 

I Carefully put on the wheelchair brakes and switch to the 2nd wheelchair, and go from there.  ( Yes there is a story in there too, but I digress)

Simple enough right?

 

Sure……….. until you add more characters to the story.

The other day, I was playing with my grandsons in the living room, when my body decided it URGENTLY needed to use the facilities.  I quickly wheeled to the bathroom, did the quick wheelchair swap, and made it to the toilet, JUST IN TIME.

As I let out the breath I had been holding I hear 2 sets of pitter patter coming my way.  Oh shit, the boys don’t know how to do steps yet and I know from past experience NOTHING will keep them away from Grandma.

Danny was the first to navigate around the wheelchair and promptly FACE PLANT onto the floor.  OH the SCREAMING!  Which immediately caused Joey to begin Wailing as well, even though he hadn’t even attempted he step yet.

From where I was sitting, (literally) there did not appear to be any blood, but I couldn’t move to be sure.  I needed to coax them both into coming in further.

Travel size Kleenex packages to the rescue!  I quickly tore open an 8 pack that lives in a box next to my “throne”, and began crinkling the packages.  Thankfully THAT, and a drawer full of pads did it!

While I was examining Danny’s face for injury, he decided that he also wanted to be on the throne, as did his brother.

Quite the family affair, don’t you think?

As we all SAT there, I was so grateful that my bathroom was one of the first rooms I baby-proofed. Although it wasn’t the most thorough cleaning ever, I was able to swifer the bathroom floor before the boys came.

I feel like I should put in a disclaimer here that unlike my story So I did a thing, where I glued myself to the bathroom floor, no one was actually injured during the making of this story.  SMH

Thank you for taking the time to stop by today.  Hopefully I made you chuckle a bit, or at the very least smile.

 

3 Broken Bones and a Lisfranc Injury

Last year I told you I had another WTF moment.  No surprise there, I’m sure. When I left the Immediate Care, they told me that I had broken two bones in my foot and would need to follow up with the orthopedic surgeon the following week.

On Monday,  I saw the KNEE surgeon.  (remember I had knee surgery the previous week) He said while they were able to do the Meniscous repair and “clean up” a bit inside of my knee, they were still recommending a partial knee replacement once I healed from my newest injury…smh

On Thursday, I saw the Foot Surgeon.  When he came into the room, he shook his head saying, “Well Grace, you really did a number on yourself this time”.

and then he said nothing and still nothing.

He stood there and continued to shake his head.  I’m not sure what the actual pose is called, but you know when someone is deep in thought and they almost rest their chin on their hand, slightly covering their mouth?  Well that’s the pose and the longer he had it, the more nervous I got.

Finally he sat down next to me and said, “Well you’ve got some options.  You have 4 broken bones and may have a torn ligament.  If we go in for surgery right now, I will have to place a plate and screws in each of the bones you’ve broken.”

Now it was my turn to be silent.

Holy shit!  No! No! No!  A million thoughts ran through my head mostly about all of the plans I had for the holidays.  I couldn’t wait to see the twins opening their presents on Xmas.  Thing 2 had just gotten a puppy and I was looking forward to training her.  etc etc

When I finally spoke it was to say, “This can’t be happening!”  Einstein quickly chimed in with, “Oh, it’s happening sweetheart”. (from the state farm JACKED UP commercial)

I pleaded, “But you said I have options right”?!?!?!

After much discussion, we decided to continue with R.I.C.E to allow the swelling to go down and to allow me some time to absorb all that he had told me.  I left his office that day in an orange split cast with instructions to stay in bed for the next two weeks with my foot elevated above my heart and the Ice machine continuously running on my knee.

While laying in bed, I spent TOO much time on Google, researching the various options that might be possible.

 

 

 

Since that first day, I have been back to be recasted 4 times. I am currently sporting the ‘sexy’ black one.

There is still a lot of swelling, I’m not spending all my time in bed anymore though either.  The current plan is to remain in this cast until the 30th (unless the swelling continues to go down) Then evaluate the extent of the lisfranc injuries to determine the next step.  Hopefully the 2nd, 3rd, and 4th Metatarsals have begun to heal by then.

Some positive notes

1.  amputation is not an option
2. I have time to blog and catch up reading everyone I missed
3. I am getting great upper body strength while using the wheelchair
4. I have mastered getting 1/2 in and out of the tub without getting the cast wet, though not without making a bit of a mess.