Been a while since I've been around... thought I'd stop in and say "hi" while here.  Of course I spent (spend) most of my time in the Meds forum... check in to see if there's anything new for Gary to try.

Otherwise just busy with work (thankfully).  Gary makes huge efforts to help when he can.  I sure hope he's wrong about what he's been writing about the economy, that's for sure.  He hasn't been yet, and just pegged the latest GDP revision, so at least his ego remains intact.  :)

Gary faces the same-old-same-old.  These days its 5 - 10 hits a day, 40 minutes to 3+ hours each, though thankfully the long ones don't happen every day.  Coupla K7-K8s a day, minimum.

Still having the insane fevers at least a few times a month.  Nice those are down from a couple of times a week.  Also nice they usually peak at 105-something so we haven't been having to rush to the hospital (much).

He's added some new symptoms.  Now the whole eye swells up and it lightly bruises underneath.  OH - edited to add - he's also become VERY sensitive to pressure changes.  Major trigger now.  More fun for everyone.

We joke that he looks like a stroke victim (with the right side of his face always off kilter) that I'm abusing.  (No offense meant to anyone suffering from any type of paralysis - we have to find some humor in this somewhere, somehow).

Still 24/day pain.  I still laugh when I remember first reading "live between the hits," and keep hoping there will be a day when we get to a place where there IS a "between" the hits.  Well - at least a break from the pain.

Neuro wants to hook him up for deep brain stimulation, but we're nowhere near being able to afford it.

Interestingly, one of our contracts is with a company using hydrogen peroxide for - well - I can't tell you, actually.  But it led to a LOT of research on hydrogen peroxide.  I've ordered 3% food grade H202 to add to distilled water (just 1 3/4 teaspoons added to one gallon of distilled water).  Should be here soon.  Maybe trying the water X3 with the H202 will help?  He definitely has something wrong with his CO2/02 exchange, as physical activity is still a trigger, and even with the on demand 02, oxygen doesn't work (lying flat, sitting straight, hyperventilating... tried it all).  Maybe if higher levels of 02 get into his blood stream via a different route...  I don't know.  Definitely heard of crazier things work for people.

Well, what do you know?  As per usual I blather on!  LOL, I really just meant to say "hi" and hope you're all...  living between the hits.   [smiley=cheesy.gif] And all you other supporters are all hanging in there... and that everyone is finding some smiles along the way.   :)

[smiley=vrolijk_26.gif]

Laurie

Laurie,

Thanks for stopping by and giving the update.  Also thanks for hanging in there for Gary.  He is a lucky guy!  I know, such luck he has, but in reality he is.  Many of us have had spouses or significant others decide it wasn't worth it and leave.  Between the two of you I believe you will beat this thing.

Jerry

Laurie,

Has Gary tried the deman valve on the O2?  Just curious... It did wonders for me where the high flow (25 liters) didn't.

I've been on the demand valve for 2 years and have had very few I couldn't abort with it.  :-*

[smiley=hug.gif] It's good to see you again Laurie...thanks for hanging in there with Gary, can't imagine traveling his road alone. Keeping you both in our prayers.

Joe

Garys_Girl wrote on Aug 28^th, 2010 at 10:09pm:

He definitely has something wrong with his CO2/02 exchange, as physical activity is still a trigger, and even with the on demand 02, oxygen doesn't work

Exertion is a common trigger, I think it is a heat related trigger, or it could be the arteries relax to allow more blood flow.

As for the O², have him try inhaling fast and exhaling slow.

Paul

Good to see you.... :)
Hang in there, Sweetie....I know you will.
Was really hoping your absence meant things were greatly improved.
Our best to you both....

Thanks for the hellos, the good thoughts & wishes, and the suggestions.  ~hugs~

Yes, we have on-demand 02.  He has tried inhaling quickly and exhaling slowly.  Tried the opposite as well.  Tried quickly breathing for 5, 10 "round trips" and five/10 minutes, then slowly for the same.  Tried many combos in many different positions.  Batch has suggested the problem isn't getting the 02 in, but getting C02 out, so he focused on the exhale for quite some time and in many different ways, including doing the "yoga" style crunches (including physically trying to push rib cage down into abdomen)....

Still keep 8 full M60 02 tanks around (can't fit the M size tanks in the RV) and give it another go 'round for a few days every few weeks.

"Hope" is something I do my best to keep alive.

And Jerry, another joke we've got is that if it weren't for bad luck, we'd have no luck at all.  :D

Gary suffers from PTSD from the Lebanon war in which he fought for 6 1/2 years back in the 80s.  He believes because of many things that happened then that he deserves to suffer for so much happiness (me  :-[ ) - well - he's suffering, so in some very strange way, it makes it all right (in his mind). 

I'm just so very thankful each morning I wake up and find he's still alive to fight another day.   [smiley=heart.gif]

I try to keep him focused on the positives.  And while the rest of us may not be "enjoying" this economy, at least it's a really interesting time in history, so (trying to) work also helps keep him going.  :)

Wow I can't imagine what you guys are going thru. My headaches are very bad but at least I get a break for a few months at a time. I can't imagine day in day out no relief. You are probably the reason he keeps fighting. Hats off to both of you. I don't know what I would do without my wife she suffers right along with me. You are a saint. Please God give these two a break!!!!!! Dan

Laurie, thank you for dropping by. :)

Wishing you & Gary the best,
Sanna

Hi Laurie,

It's so nice to "see" you again.  Like Jackie, I too was hoping that your absence meant that things were better for Gary.  I'm sorry that you are still going through this but, like the others have said, I'm so glad you are there for him.

Hugs to you both,

Jeannie

I will continue to keep you two in my thoughts, heart and Prayers...

My ex-hubby and I went through the PTSD + Agent Orange .. from the the Vietnam Era.. So I know that dealing with that alone isn't easy.. combined with CHs it really must be taking a toll on the both of you...

Keep hanging in there Sweetie..  I will continue to Pray that God will continue to give you strength and that he will find some relief very soon..'

Peace & Blessings..
Lady Luv

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

It wouldn't be so bad if he even got pain free time between the hits.  But his brain is just broken. 

My dad has type I diabetes.  He's going to turn 79 this year.  Everyone he knew with Type I diabetes that was around his age was dead two decades ago.  Despite a very healthy living (measured proteins, carbs, no sugar, regular exercise &etc.), he suffers the side-effects of diabetes.  He's survived quintuple bypass surgery, he's got issues with glaucoma and had eye surgery, he has to be VERY careful about getting any cuts on his legs/feet and wears hard slippers, &etc. &etc.  But my mom always felt like she's living with a ticking time bomb, and never knows when she'll find herself alone.  Happily, they've lived a long, full life together, and we loved getting together for their 50th anniversary celebration back in 2001. 

But this....  not only do I feel like I'm living with a ticking time bomb, I feel like I'm... living with someone stuck in a trench, lying in broken glass, with the ticking time bomb lying on top of him.