hdwhit's blog

Crushing Bore

I just noticed that it had been a while since I was last here and posted anything so I figured I needed to just say, "Hi".

In the winter of 2014/2015, I had several instances where I lost control of my legs (the most severe MSi symptom I had when it started).  This winter, I had no problems whatsoever.

I assume everything is going along okay since I still get up every morning and go to work and my performance hasn't suffered. 

Sarcoidosis

I searched this site and I'm not sure I got an answer.  Do we have any people (current or former) on the site that suffered from Sarcoidosis?  And if so, what was their experience with doing the Wheldon or Vanderbilt CAPi?  I'm asking because my wife's best friend's daughter has been diagnosed with Sarcoidosis and the immunospressant treatments they are giving her seem to make the condition worse (which it seems to me is to be expected if the cause is an infectuous pathogen rather than autoimmunityi)

I need to know because if the CAP can help, I can't just stand by and watch a 20-something girl die of a treatable condition if I know something that can help. 

The muse died with the bugs

Somebody once observed that when people do the CAPi and get better they start living their lives again and stop hanging around this site.  I am one of those people. 

I used to write some rather humorous blog posts but ever since I completed the CAP, the ability to do that seems to have left me.  I guess it was a sort of "intoxication" brought on by the toxins the CPni were throwing off that provided my inspiration and now that they're dead, so is the muse.  I do miss being jovial, but I'd rather be able to walk, talk and sign my name (all things that MS took away from me at one point).

Hugh of the Thousand (er, Nine Hundred Eighty Four) Days

I don't know how many of you are old enough to remember the 1960's movie about the life of Anne Boelyn entitled "Anne of the Thousand Days".  Apart from the candence of the title, it has nothing to do with this post.  As a young man, I did think Geniveve Bujold was one of the most beautiful women ever.  I wanted to marry a woman that looked like her.  Of course, as I grew up, my tastes changed and my wife looks nothing like Geniveve Bujold, but that's okay because so far I haven't had the urge to cut off her head.

As the sun emerges and the tornadoes spin off towards the mysterious East

We had an eventful winter.  The weather just basically blocked the sun for weeks on end.  I started to notice that if it was overcast so that noon looked like twilight for more than about four or five days, I would lose the ability to walk.  An inability to walk was one the symptoms that came at the time of my first exacerbation, so I assume these are pseudo-exacerbations.  They always pass in about 24 hours or less, but they are very annoying because nobody wants to be stuck in their car in the parking garage for twenty minutes pretending to be engrossed in the NPR story playing on the radio waiting for their legs to start answering the brain's commands again.

Well, that was anticlimactic

Well, my former neurologist retired.  My primarcy care doctor referred me to another neurologist.  The relationship didn't start well.  On my first visit, the office staff, who I can only compare to a cabal of drunken lemurs on crack lost my appointment, couldn't figure out how to process my insurance (I have Blue Cross, so its not like its a provider nobody has ever heard of before - well at least nobody other than the lenur cabal) so that I ended up in the waiting room for four hours!

The neurologist herself seemed okay. 

Incipit

He had always regarded that portion of his life spent in Texas to be a sort of exile; one he hoped would turn out to be temporary.  He wondered how many Texans knew what "incipit" (not insipid) meant?  The derelict catfish farm in Arkansas that he had once called "home" called to his mind with what seemed to be greater ferocity as each day passed, often blocking out more productive thoughts.  He repented when it dawned on him that his children would forever bear the name "Texan", but he smiled when he throught about that the judges at San Jose State Univeristy might read his musings this year and create a new category for works celebrating the Lone Star State and "Bubba Clifford".

They're Yours For Life

No, I'm not talking about children. 

If you can quiet your conscience, you can get rid of your chilren at age 18. 

You can even euthanize your cat or dog if you really want to be alone.

But, you can't really ever get rid of the damage the CPni has caused to your nerves.  Your body will try and repair the damage, but the repaired areas will never be as "good as new" and they will be susceptible to occasional malfunction.

Disappearing Contributors

It has been said by more than one person on this site that when people who are on the CAPi get better, they tend to resume their lives and they stop posting.

 

Guilty as charged.

 

But I just got a notice that I hadn't been here in a while.  I think there was an implicit threat that if I didn't back here, my account would be canceled.  Of course, I can't lose the accumulated wisdom - and cautionary tale - of someone who played fast and loose with the CPni Handbook's recommendations and ended up in the Emergency Room because of it, so here I am.

Looks like you guys are stuck with me.

A Chimera by any other name would still be an illusion

At the start of my MSi odyssey, I was - like many people - diagnosed with a number of different illnesses before the right one was identified.  In the end, the doctors working on my case collectively shrugged their shoulders and sent me (and any potential malpractice liability) to the medical school in Houston, Texas. 

Every day (or night) is not good

I don't know about others, but "pseudoexacerbations" seem to be a part of my life.  For those who don't have M.S., a "pseudoexacerbation" is a temporary worsening of an existing symptom which had previously gotten better.  This is distinguished from an "exacerbation" which is a new symptom. 

It took me nearly five years, but all of my problems with walking had pretty much resolved in the last year or so (see my prior posts on the subject).  I could - and did - literally walk down stairs faster than my co-workers could take an elevator.

Happy New Year

Someone else noted that when people do the CAPi and get better, they start living their life again and so they don't hang around the site as much.  In my case that is true. 

There's one thing I've noticed since I completed the CAP a couple of years ago and I was wondering if anyone else has had the same experience.  Since completing the CAP, my toenails grow very slowly (i.e. I can go two weeks between having to trim them) and my fingernails very quickly (i.e. I have to trim them twice a week).  Has this happened to anyone else?

 

Touring the Nation's Emergency Rooms - a thing of the past

Those of you who have been on this site for some time will recall that early on in my treatment I had some really significant adverse reactions to the CAPi; most of which were attributable to the fact that I didn't take the need to take charcoal or some other bile-acid sequestrant seriously enough and it landed me in a hospital emergency room on more than one occasion. 

Well, I'm just back from Indianapolis, IN, and I managed to avoid having to go to the Emergency Room.  That's probably just as well.  Most of the hospitals that I passed by on the way to my destination in the city, proper, looked like they had seen better days.  The hospitals in the suburbs looked much more up-to-date, but were probably too costly for me.

 

 

Joviality Returns...

I serve as the clerk for the eldership of my church.  It is a position of considerable responsibility but little actual power.  This used to weigh on my mind considerably, but letely as our financial position has deteriorated, I find myself more and more jocular - much the same as I did when I had full-blown M.S. I only did something like 22 flagyli pulses and so I find myself starting to wonder if the disease has returned.  And if so, whether repeating the protocol would be worthwhile as the bugs would now presumably resistant.

The people in the waiting room thought I had lost my mind...

...but what else is new?

I didn't get a tutu, but I did dance into my neurologist's office as discussed in my blog here last year.  The other patients - none of whom looked any more disabled than I am looked at me like I was insane.  I just wished them a good day and told them I was happy that my neurologic problems were getting better.

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