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.

My Darling Husband!

Submitted by Sarah on Thu, 2017-02-02 13:57

No longer working as a medical doctor, but showing that he has been far from idle.  This year he has at least four short stories being published: two different editions of the British journal, Confingo, the first in April, the second in October, one story as a chapbook published by the Nightjar Press and one story available now from The Woven Tale Press, an American journal:http://online.flipbuilder.com/eovs/vlpw/This can be seen online at page 59, but the whole magazine may be bought: containing stories, poems and art work, it is full of interesting things!

Started rifampicin

Submitted by supaguy on Wed, 2017-02-01 12:19

In the early hours of this morning, I popped my first capsule of rifampicin. As far as I am aware, I didn't wake up dead, so about an hour ago I put my 2nd capsule ... and it seems that I'm still not dead.  I am on half dose of 300 milligrams per day and shall double up two-fold within the coming week.  I must say that I did seem to feel it ... but then it could have been just my imagination.

Still going

Submitted by katman on Tue, 2017-01-24 10:19

Twelve and a half years is the time it has taken to get this far.  This has enabled me to see my identical twin grandsons grow into wonderrful young men - they both graduated from the University of Michigan with a straight 4.0 GPA and are now enrolled for their Masters degrees.  I would not have been here if not for this program.  That is one reason I am so delighted that I have had this chance.  

9th and 10th Pulse

Submitted by panc on Mon, 2017-01-23 20:46

9th pulseAfter quite some time I had finally one more terifying fainting episode(I lost conciousness) and I was feeling like I was going to faint again for the next few days Frown. I also had a cold at this point, I guees it didn't make things easy.10th pusleAll was fine. Also I feel some more improvements in all the weird symptoms in the heart area ("pressure","burning", "tearing", minor pains and anoyances) Right now that I'm writing these lines I feel almost normal, so far it has been two steps forward one step backwards, slowly improving.... I hope this will continue...