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Living With MS during the Coronapocalypse

~ msgracefulnot ~ Leave a comment

I don’t know about the rest of you, but I do NOT like change. Especially when I feel that it has been forced on me. I imagine several of you are also struggling with the staying at home change. This is a post from someone that deals with those limitations all the time. Maybe you will find some of her words inspiring?

alixinwonderland's avatarAlix in Wonderland

I was recently asked to share my thoughts on the current pandemic, as someone who lives with an underlying chronic illness. A contact at the National MS Society is working on a story regarding the Covid-19 outbreak and how it has changed daily life and how some things have stayed the same. This is what I shared with her.

I have been watching the development of the Covid-19 outbreak since it started becoming prevalent in China. My god-mother lives in China with her husband and children, so was a bit anxious about it from the very beginning. As the virus continued to spread, rapidly, my anxiety grew stronger and stronger as my husband and I had our honeymoon planned for mid-March.

The week we were supposed to leave for our honeymoon I made an appointment with my Neuro to talk about the potential risks of the virus and my MS…

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Burning the Candle at Both Ends

~ msgracefulnot ~ 10 Comments

I am currently suffering from a ‘condition’ that is the exact opposite of having ‘Writer’s Block”.  I have no idea what that is called.  Maybe verbal diarrhea?

I have so much I want to say and SO many stories I want to tell.  What I am lacking is the TIME.  OK and the energy.  I am definitely lacking the energy as well.

I believe every post that I have written this year, with the possible exception of,  Hey, I’m doing alright, has been of a somewhat bleak or serious nature.  (Broken body parts, bad test results, surgeries, hearings etc.) For this reason, I don’t want to just ‘disappear’, and leave anyone thinking that I have died.  At this moment, and for the foreseeable future, I will be burning the candle at both ends.  Which means I have to prioritize where I am PRESENT, in order to not burn out completely.

What is so urgent that I am burning said candle?

  1. My oldest daughter (Thing 1), my son-in-law, and the grandbabies will be moving out of state.  While this is absolutely breaking my heart, they have been presented with an incredible opportunity that heart broken or not I have to support.  Time from job offer to relocation less than 2 weeks notice.  I will be riding out with my daughter and the twins next week.  Then turning around and flying home.
  2. When I get home I will be having Another surgery.  My ‘baby steps’ in the boot have already proven to be too much, so I will have to have the unhealed break fused together.
  3. It’s only taken me a year to do it, but I finally have insurance for LAST YEAR  (yes you read that correctly).  That means I have hours and hours of phone calls and letters to write.
  4. Also Great news, I do not have PML!!!! The doctor still cautions that my JCV levels are too high to maintain my current treatment and infusion schedule though, so I have had to lengthen the time between infusions and my ass is dragging.  While exploring my other drug options I had planned on going to an informational meeting  for Ocrevus, but it has been cancelled because of the Coronavirus fears.
  5. And finally, by the end of the month, my parents and their 50 year’s accumulation of belongings will be moving within 5 miles of me.  This IS a good thing, but they need help, and it is way more work that I can handle right now.

On that note, I am going to stop writing for today and catch my breath for a bit.  My stories and I will be back before you know it!

 

 

What the hell was I thinking?

~ msgracefulnot ~ 8 Comments

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…..

~ msgracefulnot ~ 14 Comments

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.