willingtocope's blog

One more time

Submitted by willingtocope on Thu, 2017-06-22 15:25

Chills yesterday afternoon.  Had to call care attendent to help me get in bed.  She left my powerchair with the front casters sticking out forward.  I felt okay when I got up around 5:30am...weak, but somewhat mobile.  Used my walker to move over to the powerchar and got my legs all tangled in the wheels.  Hit the floor.

No damage done, but had to call the troups to lift me off the floor.

Another one.

Submitted by willingtocope on Tue, 2017-04-25 14:24

This time i went to bed at normal time, watched some TV for awhile, and went to sleep.  Woke at 1am...chills...lasted until about 2:30.  Went back to sleep.  Woke at 5:30.  Tried to get out of bed.  Legs gone.  Went back to sleep again.  Woke again at 7:30...struggled...but finally got out of bed.  Legs not real cooperative, but I was able to get in my power chair without falling.

Its now about 1:30pm, and I'm feeling better.  I can stand and move around in my chair.

Overall, I've bee feeling okay for the past two months.  Not great, and I do have trouble co9ntrolling my body temperature...flucuates between 97 and 100 F.

And yet again..

Submitted by willingtocope on Sun, 2017-02-05 13:51

This time during the day, yesterday.  Okay until about 2pm, then chills...fever around 100F.  Legs completely gone.  After trying to go pee twice, and having to call the care attendents to get me back in my chair...twice...I decided to get in bed around 5pm.  And, of course, I had to call for help to do that.

Fell asleep.  Slept until about 10pm.  Tried to get out of bed to pee...couldn't...but luckily, I have a bottle.  Went back to sleep.  Woke again around 3am...got up just fine.  Peed.  Went back to sleep until 6am.  I got up, got in my chair, and I've been "normal" all day.

Whatever these episodes are (psuedo-exaccerbation?), they only last about 12 hours, then I'm good to go for another couple months.

Once again...

Submitted by willingtocope on Thu, 2016-12-01 17:37

This time in the middle of the night.  Woke up with chills...lasted about 2 hours...then low grade fever.  Trying get up at 5am, and my legs were completely stiff.  I couldn't bend them at the knees.  I had to call the care attendents to get me out of bed and into my powerchair.  At 7am, I stood up to urinate and everything appeared normal.  We'll see how things are when I try to go to bed tonight.

This all puzzles me.  I'm still taking NAC, doxy, and rithro daily.  Most days are pretty good.  I'm not walking any better, but its not any worse either.

I don't pulse anymore...last time my PA noticed my heart skipped beats and suggested I stop.  I did, and my last checkup two weeks ago showed no problems.

I haven't blogged in awhile...

Submitted by willingtocope on Fri, 2016-08-05 12:26

Yet again...no real improvement...but...no further progression.  So, I'm going to call the protocol succesful.  I'm sure, if I'd get off my but and exercise a bit, improvements would come.

I did, however, have one of those episodes Aug 2.  I'd been feeling a little off for a couple days.  Low grade fever in the afternoon.  Monday, chills in the afternoon.  Went to bed, couldn't get up again.  Finally, about 5am, I struggled to my feet and then collasped (gracefully) to the floor.  Had to call the care attendants to pick me up.  No damage.

Turns out there was indeed a bug of some sort going around the building. 

Everything seems back to normal now.

I haven't blogged in awhile...

Submitted by willingtocope on Wed, 2016-01-20 12:58

I also haven't pulsed for awhile either.  Pulsing seemed to turn my burner down to "simmer" and I need to be coherent because I still work for a living.  Things seem to be improving...slighty...without pulses, so I've let it slide.

Last Sunday, however,I had one of those "episodes".  Developed chills in the afternoon, went to bed with a low grade fever, spent the night unable to get out of bed...woke about 6am...everything back to normal.

I don't know if this is Cpn related or if I just caught something else.  Whatever it is...its been quite awhile since it happened before...and it only lasts about 18 hours.  Weird.

Potassium?

Submitted by willingtocope on Tue, 2015-02-17 18:52

So, since none of the neurologists or MS specialists in my area have anything to offer for SPMS, the only "medical" care I get is from a visiting physican's assistant.  I have edema in my feet from sitting all day working on the computer.  A year ago, she prescribed Furosemide...40mg daily.  She also prescribed 10meq of potassium to "pull water back into my intestines".

4th Flaygl dose.

Submitted by willingtocope on Sat, 2015-01-10 11:58

Really, really sleepy...even now, two days after last dose.  I'm not sure what to attribute it to.

1.) I added Low Dose Naltrexone to my pill pile 4 weeks ago.  I'm still getting vivid dreams at night, and, instead of eurphoria mid to late afternoon, I get a little anxious. 

b.) I'm having bowel/bladder issues.  (I do have some probiotics but the last thing I need is rushing to the bathroom.  Sluggish bowels are pushing on my bladder).

Between the two, I sleep only an hour or so at a time.  I'm in bed for 11-12 hours, but I have to get up frequently.