Wednesday, August 10, 2016

One Step Forward and a bunch in all other directions

People may think I whine, but they have no clue what I really experience.  When the fog gets this heavy, it is a little scary.  Can't get up for more than a couple of minutes without felling sick.  It sucks.  But if I can establish some order and adhere to a reasonable schedule, I may survive OK>

Right now, I don't know.  I pushed too hard, as was evident on ride back from work yesterday; several potentially fatal lapses in situational awareness.  I think I was conscious, just in and out of the present reality.

Now I am stuck in an uncomfortable fog of fatigue and a little confusion.  This sucks.  I cannot give up yet.

I wish I truly believed in everything any religion has to offer.   I cannot lie about that.  I lost any faith some time ago.  No idea why.  Maybe lack of discipline, practice, or just being stupid.  People who have faith are better off, I think.  It almost doesn't matter that there is no proof, or the details of what it is they choose to believe.  I do not believe those fools who think they know all there is about life and existence, claiming a belief in science.  What does that mean?  And how can you actually pretend to be scientific if you close off possibilities outside your immediate understanding?  

The academia club can be a disgusting, annoying bunch of tripe.  Never have I met more closed minded people than those who consider themselves the elite of academia, therefore the world.   But right now,  I am too weak to even slap any of them.

My whole body feels like big heavy slap of clay.  Movement is not something it wants to initiate.

So many days, I say to myself, or the God I don't know if I believe exists, "Please.  Not today.  I can't die today, with this mess for others to sort.  Please wait until I have things responsibly ordered.  Then i will accept it.  But for today, please do not let me die.

That is when I feel so heavy, and weak, and foggy, and dimwitted.   I feels like my heart or a blood vessel in my brain could go at any time.  So, I mentally prepare for the monumental effort it takes to sit up, and get up, walk across the room to swallow one low dose aspirin, as prescribed.   I better do it.  Maybe this change is because my blood has gone haywire.   Too many platelets can be big trouble.  Too few can be dangerous, too.  I have tested with both conditions.  Had to cut down on the hydrea when they tanked.

Now I can't wait for night, cool air and maybe a little sleep.,  This tired mess is not so good.  But there are others who have no say so at all.  They can't even move at all.  SO I probably can do OK

Times Are Changing--great gig at the naked place

Physical changes are definitely occurring.   Hardly any of the fiery itch attacks, but fatigue and fogginess have jumped.  I stayed over night at work to get everything done.   I worked into the night on Monday.  I thought it was about 10 PM when I finished.  Yikes, it was way past 1 AM

I did not get much sleep, I suppose.  I will blame that for being so unsafe because I kept zapping into waking dreams on way home.  I almosyt had head-ons, almost hit the embankment on the side of the road, almost hit the end of the guard rail.  On and on.

It was strange and weird, and clearly unsafe.  I kept thinking I was ok, then the next thing I know, in my mind I am elsewhere, either doing something like riding a bike, or talking to someone, etc.  Then zap, I am in reality heading for a giant bolder head on.

Man I cannot do that.  Someone could get hurt.  But they didn't.  I made it home.  The good part is that for the last 25 miles of the journey, presence of other cars and humans are at a minimum.

Even though all the work and exercise and playing help fight fatigue, they do not prevent the cause.  But to a point, being active is therapeutic when I can get rolling.

All of a sudden they are talking about cannabis solutions on the AP forum.  Aquagenic pruritus. That is the best term we have for this symptom.  Water; humidity, perspiration, and any moisture, in general (along with heat) are triggers.   Many of those people have the type of blood disease I have, or something in that family.  Those with JAK2 mutation almost always have "the itch".

Some are affected as I have been, and some do not experience that intensity of discomfort.  The ones who off themselves apparently do.

So, now people are finding hemp/cannabis solutions.  I think CBD oil--the one which is not so psycho-active or narcotic, may help.  It has been a life saver for certain conditions which manifest in seizures.   Also I know of a man who has really defied the rule with his mesothelioma for the last 6 years, since his diagnosis.  His wife did tons of research and started giving him cbd oil with some thc at night, while reducing chemo etc.  You would not believe how well the guy is doing.

CBD is believed to attack some cancers. Really, they do not know much, even about drugs they have prescribed for years.

I have availed myself of patient groups and information in order to try to keep this condition from preventing me from working and doing things.  Living.  My disease is relatively rare, and my subtype and symptoms narrow it even more.  This limits the scope of info, but what info I have found is good and useful.

I have a way to get cbd oil, and I have not had much in the way of attacks for weeks.  Right now, I am not sure if it is the cbd accounting for the change or not.  It could be my situation is changing,   With all the fatigue it may be morphing into myeloid fibrosis.  Only bone marrow biopsy can say for sure.  I have suspected this from the start anyway, but without proof, we do not know for sure.  Reduction in itch, increase in random deep bone pain and joint pain, much increase in heavy footed, stumble-bum fatigue.

It gets embarrassing when I fall easily or bump into things constantly,  It happens with heavy fatigue. Co-workers just think I am clumsy.  I really am not clumsy.

The Gypsyfest gig was fantastic.  I risked all by going up Friday afternoon, pitching a tent, camping for the weekend.  I had to try.  It took forever to put up the tent.  It is a simple tent.  I took a lot of breaks.
But it worked out.  I could not have survived in the heat just setting up a tent, let alone staying there for a couple days, for at least the last two years.  Maybe more.

Some people there do not wear clothes.  It is an optional thing.  The good looking woman with the smirky creepy German guy were camped near me.  They did everything neatly and perfectly.  She was one of the naked ones.  And I like her.  I wish she'd dump Franz.  Of course there appears to be some money there and it could be his.  Otherwise why do nice women hang with jerks of his ilk?

Oh well.  Even the naked ones get way these days.

I have to say, the bands and musicians were pretty cool at this thing.  A somewhat eclectic mix of music.  The people were very nice and respectful, naked or not.  People did not leave trash around.  They pick up after themselves.  Unlike your garden variety "protestor".   I had protest mobs.  I just do. It is not the holy, pure thing we've been told. Mob action and mob psychosis are to be loathed, not promoted.  Not to say rebellion is not often called for.

Protestors are usually totalitarianists trying to stack the deck in their favor, playing victim, minding the business of others--the standard drill.

Enough of that.  You have no concept, I wouldn't think, of what a solid landmark it is that I slept in a firggin tent, and had such a great campsite that it was the hangout for the band and others.  Parking and all that.

I went ahead and played water volleyball in the early morning sunday.  I was in the water without severe itch.  I was able to exert.  You cannot imagine how weird it is to do such things when two months ago, such activity would be out of the question.

I forgot when next appointment is, but with physical changes, no-itch rashes, fatigue, ability to sweat without convulsing and being wiped out for the day with horrible itch, I think they better draw blood and see what's up with the levels.

This series of events marks a very significant, and maybe positive, change.  It is possible that cbd is causing the influence and prevalence of the wacko JAK2 gene to decrease so that the actual disease is minimal or even retreating.  We shall see.  I can be clinical and scientific enough to look for other explanations for the change, even though it coincides with CBD oil intake.

Playing was a little tough.  Certain facial and mouth muscles just kind of froze when I tried to do certain things.  I could not articulate those techniques, so I faked it.  It happens.  The next night at Comedy Club, no such trouble so that is good.

This is way too long.  If you knew what it was like to be me, and if you believe in miracles, you would tend to wonder if me being able to spend even one hour at that desert canyon resort wasn't a miracle.  And the fact I actually camped.  Outside on a hot sunny day...geez.  I was in shade most of the time though.

Maybe I will delve into sub-stories from the Hooplah in Jacumba (hah-CUM-bah) later on.  As well as the whole comedy club thing--a big success--sold out house, best looking crowd I ever played.  Lots of trophy there.

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Ballistic Mountain, CA, United States
Like spring on a summer's day


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