katman's blog

Hoping for a Higher Level

Submitted by katman on Mon, 2007-08-06 11:18

It seems much longer than the 20 days that have elapsed since my adventure in Wyoming. After returning only 3 weeks ago tomorrow, we (Richard and I) began flagyl 2 days later on Thursday night. My own response was the usual short hour until loss of function - a little less than usual - and mental confusion - much more than usual and the lethargy lasting for days. I still have the emotional flatness and great amounts of slow, fuzzy thinking. And the vertigo, something always present, this time in huge waves requiring me to hold on and wait till it passed every time I changed position. Even now, 13 days after ending the pulse, if I move suddenly, I must stop and wait, but briefly now. I look at this pulse in wonder.

Persistence by any Other Name

Submitted by katman on Wed, 2007-05-30 13:36
.....perseverance, defiance, stubbornness, terror, bull-headedness - these all apply. Another level of recovery has come, another mountain has been climbed. Beginning 16 days ago, I clipped goats, packed the showboxes, mowed, did daily upkeep and in general worked like the proverbial dog. (That somewhat mystifies me because our dogs don't work very hard but that will require more thought.) So we got to the show and spent Friday clipping 18 bodies (the legs, heads, and tails were clipped and feet were done), spent Saturday in the ring, except during the famous PPMS Clan meeting, went Reserve Grand Champion, went out for a well-deserved meal, then sleep.

Blurred Locomotion, Fuzzy Reality

Submitted by katman on Tue, 2007-05-08 13:52
It has happened again - tinadazole is easy for me but the aftermath is no gain. Last year I did three pulses of tini because of the National Dairy Goat Show - I simply did not have time to be "out of the loop" - (loopy, that is!) so it was an excellent time to try this magical drug that didn't send you reeling to the bottom of the well. After days of waiting for events to occurI realized they weren't going to. They didn't; nothing happened that I could tell, except that my walking became - well - mushy. So I went back to flagyl. I have done nine or ten of flagyl with very clear- cut inprovements since then. Spring came (?) again, bringing 23 kids (one of these days, we will figure out what's causing that!), hours in the barn, classification, etc.

Going down for the 40th time

Submitted by katman on Fri, 2007-03-16 11:56
Before I submerge too far I thought I would do a short blog on the "feel good" time between my 39th pulse and the one (#40) that I began this morning. The message I want to convey is: it did take the 11 days of recovery but then last Saturday, the 19th day post-pulse, began the best days I have had since 2003 and better than many of 2002. As I hoped for, the rather brutal attack on my hips and knee resolved itself and took that pain and some more brainfog and vanished like morning fog being burned off by the spring sun. It has been a really, really good week with many hours of hard work, which I happily welcome. A second point is that I have been able to extend the time between to 24-25 days. My legs spoke last night but in muted voices - I could barely hear them.

2 1/2 years - now this?

Submitted by katman on Fri, 2007-03-09 11:04
For a very long time I have believed that my post-flagyl was a mirror image ot my pulse. This one, number 39, a REALLY good one, made a fibber out of me. Number 38 was abbreviated to 3 days because we had very special company coming from Canada and I sailed right through it. But I think the last two day's targets were saved up and gunned right down at the very beginning of the next pulse. I hereby pull out Jim's old descriptive word - slammed. This pulse took 11 full recovery days during which every step was agony and attacked with real vengeance in addition to my right hip, my left hip and out of absolutely nowhere, my right knee. Suddenly, in a few hours, it vanished. But now my knee bends when I walk!

Too many battles, not enough troops

Submitted by katman on Thu, 2007-01-11 10:50
"Veterans" also take "falls", or the plodding two steps ahead and one back , sometimes a big one.  Last weekend both Richard and I got whatever was sweeping through the populace.  He, being a pediatrician, has been exposed to virtually everything and consequently gets almost nothing.  So, when something gets through his defences, it is a good one, and he had already shared it this time.   We both spent two days and more flat.  He is now up and running while I am kind of shuffling along behind.   I debated putting this  "on paper" but felt it should be noted:  in a matter of hours - about one month per hour - I regressed in my abilities, walking, energy, thinking.   It was as though my body had too many battles going on simultaneously and couldn't cope.  So we coddled ourselves, eating exceptionally well, sleeping lots (fortunately Dr. R. was not on call that weekend) and got better, which probably would have happened in any case.  BUT - my walking came back as fast as it left, reaching the point by Tuesday night that we could begin flagyl (just can't get enough torment).   I still have a really bad cough but this has not descended into my chest, which has always happened since I was a kid, certainly with a cold comparable to this.  However, right on schedule, a day or so after the first flagyl, my right hip and knee  began  a giant ache.  This has been the main focus for the last three pulses, having pretty well cleaned up my neck, right shoulder (not QUITE finished there), my lower back and other various lesser targets.  Amazing, all this. 

Twenty-eight months - a marker

Submitted by katman on Tue, 2007-01-02 16:13

In the 28th month of relentless, daily treatment, I feel that I have earned the right to stand at the vantage point of a second or third tier trailblazer.  I stand as Pancho to Don Quixote or Tonto to the Lone Ranger.  There are a couple of operatic characters nibbling at my sub-conscious but you get the point.  My first piece of  loud vocalization is as Guner said:  "You may get discouraged, but don't give up".  Jim wished for each of us in his discourse for the new year the stubbornness and long, long vision (and I modestly add: courage) it takes to  do this.  I have a very real problem with sharing MY body with all the freeloaders who are doing just that.  I am indignant - I have worked very hard for my place in life and the workplace and when I found that these nasty little devious creatures were stealing my life, I had to fight back.   After spending much too much time in their immediate presence and on their level, I am leaving them behind.

The Final Chapter - it Never Ends

Submitted by katman on Mon, 2006-12-11 10:58

It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence.  We can accept that.  We have learned  to adjust, to be grateful for the chence to do the battle, and to sing the praises of  getting better, which were not chapters in the volume before this someday best seller.

My 36th pulse will begin soon.  I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so.  My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct.  My question has become my mantra -  why don't all MS patients give this "a try" for a year?  There is so much to be regained.

Rica 

Hope, Disbelief and Reality

Submitted by katman on Thu, 2006-11-30 11:00

Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope.  Then came the months of disbelief and "I couldn't do that before", about  twenty-three of the two together.  I am now in the reality phase and I love it.

My visit to my doctor was a few weeks ago.  For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more).  Just as "normal" people could do, I did all with an A+.  I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker.