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!

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.

 

Another surgery?!?!?

Hopefully the last one this year…..smh

I haven’t seen the surgeon to follow up about my foot surgery yet, so I’m not sure that I’m “done” there yet, but I FINALLY have surgery scheduled for Botox in my bladder on Friday.

The last time I had this surgery was February 9th of this year, and since it only helps relieve symptoms for about 4 months, let’s say I am WAY OVERDUE.

If you’re interested in reading more, the link to that post is here….

You’re getting Botox where?

Both the surgery and “recovery” for this one will be a piece of cake, to be honest the scheduling of it is the most difficult part.  I also hope that doctors are able to come up with some other “treatment” soon because I suspect my body will develop an intolerance or tolerance for it.  (you know when a treatment just stops working?)  and having to carry or wear a bag of pee just plain sucks.  (yes even though I have officially given it a name, it still sucks).  So YAH surgery?!??!

While I’ve got you here though, (I hope you’re still reading).  Can I tell you about my foot?  AGAIN?!?!?

First the “technical stuff”

Today marks one week post op.  I see the surgeon again on Thursday.  I have FINALLY been able to put  weight on it (with the Boot on)  AND can tolerate the pain without pills!

even upI have even been able to walk to the bathroom as long as I have the “even up” on my other shoe to help realign me, stand up straight?  I’m not sure how to explain it, but it makes my shoulders straight when standing and takes pressure off my right hip.  Win win

Since I can get to the bathroom easier now, I was able to take the foley out.  First time I am ever grateful for having such a small house.  (10 steps in one direction from my computer to the bathroom and 15 steps to my bedroom in the other direction).

I no longer have to stay in bed

Keeping my foot elevated is still important though.  I was even able to get the wheelchair out of my house by myself.  I went for a “different” kind of walk the other day, more of a roll?  While I wasn’t able to take my “normal” walk, I did make it around the entire block in the wheelchair, using my arms for a portion and my left leg for the other.  It felt great to be moving again.  I know it will still be a long time before I am able to really walk again, it was freeing to know that I can “get out” by myself…and it’s a hell of a workout to help shed the pounds from all the ice cream Jeri delivered.

Thing One and Thing Two

Although Thing 2 and her boyfriend have been helping tremendously, (Ice pack and coffee deliveries right to my bed)  it’s refreshing to be able to do it myself.  Thing 1 and her husband stopped by to check in too.  She is 5 months now and the baby bump is really there now!!!!!!  As I have said before, I’m only a LITTLE excited!!!!!!   Yah grandbabies!!!!!!

granny imageWhile having so much time to ponder, what I would like to be called,  I think I am going to hope for Mammy,  but I will write more about that later.  I do know for a fact that GRANNY just isn’t going to cut it.  I can’t hear the name without thinking of Granny from the Beverly Hillbillies….. While I do have her spunk, it’s just NOT gonna happen.

Several of you have commented the you are sorry that I am going through so much, and I really appreciate it, but please don’t feel sorry.  I have amazing friends (you included) and family, and have never felt so loved.  Even Einstein has delivered food and….shhhh cigarettes :(.  I will pick up that battle again, just not today.

Thank you all for reading and commenting.  I am sorry that I have missed so much going on in your lives, I will remedy that today.

 

 

 

Teaching my phone to swear

Those of you that have ever talked to me on the phone, in person, gotten a text message from me etc, know that I have a “potty mouth”..  Not only do I frequently talk about “potty” and my bag of pee, but I just can’t seem to utter more than a few sentences without a cuss word or two popping out.  Popping, not pooping, although I do talk about pooping or not being able to alot also.

Last month, or the month before, I had to do a warranty trade on my smartphone, which in my opinion is Not very smart, although some would claim operator error. 😦

I have always struggled with the talk and type technology, because I speak quickly and do not enunciate.  This was proven when I asked my kids to “fix the damn phone” and they politely explained that I don’t enunciate when I speak.  To prove them wrong, I turned on the talk and type and said “ENUNCIATE”, the phone responded by typing E9C8!

SMDH AGAIN!

So now I have this ‘New’ smartphone AND I am cutting down on the number of cigarettes I smoke each day, in effort to quit on August 15, 2018, so needless to say I have been swearing a bit more lately.

After talking out a message that contained some “cuss words”, I forgot to turn off the talk and type feature on my phone before I said,

“It’s not duck, the word is fuck.  I really don’t understand your objection to ass, and on that note what the hell is wrong with shit or even hell?  It’s not like I used all the words in one sentence”

My phone typed….

” It’s not duck, the word is duck.  I really don’t understand your objection to ASK, and on that note what the he’ll is wrong with fit or even ****?

Immediately after reading that I said, “Bastard”, which for the record translated into “Last Turd”.

So I have decided to teach my phone to swear.  I have been correcting THEN saving each of the words that it misspells or ***** out.  So far I have added

piece of shit

fuck

shit

damn

hell

I cant say the C word, but it would probably come out as CANT anyway.

This morning I said, “I am coffeeing” which I know is technically not a word (its a way of life).  The phone typed doddering…which I left because I probably was.

Can you think of anything that I am missing?  When the day comes that I am finally ready to tell that ONE person that got on my last nerve off, I want to be prepared.

 

ME and my bag of PEE

I wrote last week that I was going on another “adventure”.  Maybe I shouldn’t have SAID anything?… Somehow MS found out that I am going away and decided that there was no way in hell I would be traveling without it.  GRRRRR

I realize that MS has a place in my life.  I make room and accommodate it’s demands all the time, but just ONCE I would like it to stay in the background a little more.

I should probably get to the actual point of this rant huh?

As I finished packing this morning, I had to pee again FOR THE 4th TIME IN LESS THAN AN HOUR!!!! Seriously?!?!  I just had PTNS last week, and Botox surgery in February for this.  I shouldn’t be having problems again this soon!

Thinking that it is  better to be safe than sorry, I called the doctor’s office.  They agreed that maybe I had a UTI and should come in to rule that out.  (yah for getting me in so quickly)…. Urine test complete, no UTI, but they still want to put me on antibiotics anyway, and suggested I use the Foley catheter for my whole trip. 😦

I am actually ok with having to use the catheter, lord knows I’ve been dealing with incontinence long enough, and who would want to have to pull off the interstate 4 times an hour for a 16 hour road trip?  The thing that stresses me out is having to deal with people’s reactions to seeing someone with a bag of pee strapped to their leg in public.

Well you could cover it up Grace?

Why?  So other people are more comfortable?  Not a chance!  The weather in Texas and Las Vegas is supposed to be in the 100’s, no chance in hell I am going to wear pants.  I have already given up half of my suitcase for incontinence supplies, medications, and such.  The only way I have half a chance in hell of surviving the heat is wearing shorts and tshirts or tank tops.  I had hoped to stay in/or by the pool while in Vegas, and I realize if I can’t get these symptoms to calm down I MIGHT have to give that idea up though :(… we shall see….

I’ve got this!…The only thing left is to come up with a name for my “companion”….Any suggestions?