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OMG Grace! Is that ALL you do….. talk about your foot?

Well that’s not ALL that I talk about, but since there is not much that I can do without it  affecting me, yes I talk about my foot A LOT.  And my wheelchair, but I have that because of my foot, so I guess it’s about the same huh?

I promise to write about something other than my foot soon, but first I would like to share some updates for anyone that is interested.

0402201617First of all, I have now been casted in every different color material available.  Who would have thought that something like that would go on my list of “achievements”?!?!?0402201529

Secondly,  while there is still no end in sight about the amount of time I will be non- weight bearing and in a cast, the incisions appear to be healing well and I am no longer in much pain.

0422201927Third, while I swear I have not put any weight on my right foot, I can’t say that I haven’t been a bit self destructive during my recovery. Not only did I have a bit of an obsession with tearing apart one of my casts, but I also attempted to go down two stairs by myself and ended up being launched from the wheelchair.  Thankfully, the doctor said the x-rays showed the only damage I did was to my pride.  Yay for me!!!!

Thank you for taking the time to stop by today.  If you have a few more minutes, would you mind sharing your longest to recover from injury?  Did you follow doctor’s orders? I look forward to hearing from you!

 

 

 

 

 

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?

 

 

 

What the hell was I thinking?

DO NOT SCHEDULE 2 MRI’S ON THE SAME DAY!!!!!

I know better!  I’ve even written about it in…. Not the Tube.   Of course, I didn’t listen to myself. SMH  Then again, when I do listen to myself, I often make bad decisions.  When your done reading and or watching please share your opinion about whether YOU think I should listen to myself.  I’m pretty sure the answer is not a simple Yes or no.

Ok, so my dumb ass not only scheduled two MRI’s for the same day, but I also attempted to do it drug free.  I will NOT be doing that again!  In fact, I’m pretty sure the hospital put a great big caution sign in my chart saying that I have to be sedated. SMH again

Thing 2 picked me up on Friday and drove me to the hospital for the procedures.  I found that she REALLY enjoys pushing me in the wheelchair.  ( into the curb, into the wall etc)  I went through my 200 question checklist about whether I had metal implants, tattoos, etc in or on my body and was surprisingly ok’d to get in the tube.  Then the nurse asked if I was claustrophobic.  Um yeah….”OH SHIT, how had I forgotten to take the medication?!!??!?”  She told me they could reschedule the MRI, or I could take the medication and wait 45 minutes for the medication to take effect.

I TOLD her I would be fine as long as the tech talked to me between pictures.  SHIT SHIT SHIT!  As she wheeled me to the dressing room to change into the scrubs they provide, I could feel my anxiety increasing, and discreetly slipped a xanax into my mouth. Work work work!

The MRI tech was back within moments to take me to the MRI room.  I’m sure the terror I was feeling (yes terror) showed on my face when he also asked me if I was claustrophobic, but I also told him I would be “ok” as long as he talked to me between pictures.  (I told him all 5x that he asked me)

I wasn’t ok.  I freaked out!  I pushed the panic button before the first set of pictures where complete.  I passed out before he pulled me out of the machine, and vomited on the floor as soon as I came to. SMH again.

Fortunately, the MRI department was very forgiving and not busy that day.  They cleaned my mess, and allowed me to clean myself up.  They told me if I wanted to take medication I still could, but I would have to wait 45 minutes for it to take effect before we could try again.  Perfect! I thought.  I would probably only need another 25 minutes to be “calmer” since I had already taken one, but the least I could do was wait 45 minutes after the ordeal I caused.  Unfortunately, they needed to see me take the medication.  Ah fuck!

Um OK.  I do know that I CAN take two pills, as I have previously been prescribed a higher dose, but I also know that it pretty much puts me ‘out’ for the evening.  So OF COURSE, I made Bad decision number 3, (if you’re counting) and took the pill.  While waiting to retry the MRI, I noticed an empty wheelchair in the hallway, and asked Thing 2 if she would like to have a race or 2.

We did.  Here is the video to the only race I may have won (my foot dropped and I think I may have pushed off).  Wheelchair race  After several races, (I encouraged other patients and visitors to get involved as well)  I did survive the two MRI’s to test for PML and am waiting to hear the results.

So what’s your opinion?  Should I listen to myself or not? 😉

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.

 

Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!