Re: Re: this sucks! attn Rich and all

[Guest guest]

Yes, it's all in your head

unless you lie in bed and eat bon-bons! And then of course if you do

that, it's all in your head too because you're lazy and won't get up.

You can't win for losing.

My wife is the most motivated, unrelenting, persistent person you can

imagine. She would have to be to have lived at all during the past 30

years. In better days she would take a trip somewhere for a vacation,

push through, and then suffer the consequences for two months

afterwards. All people see is someone out on a fun vacation; they

don't see the subsequent crash-and-burn, they don't witness her not

being able to remember her own husband's name, the raging fevers,

waking up screaming in the middle of the night with muscle spasms, etc

etc.

Then you have the disability carriers who sit out in front of your

house waiting to snap pictures of you going out to your mailbox or

taking that once every other month trip to the hair dresser (hasn't

happened to us that we know of but there are plenty of people we have

spoken to who've had it happen ... including one instance where they

slightly sped up the video of the person walking to make it look like

she has more spring in her step!)

It's a strange world we live in; sometimes the "healthy" people are

sicker than the "sick" ones they are for some reason so offended by.

--Bob

pjeanneus wrote:

I get the impression that the two neuros I have seen think I am

exagerating because this has been going on for a year. What they

overlook is that I have been to quick care, the hospital and five

doctors with no diagnosis. I finally did get my GP to prescribe

Diamox, and it seems to help, but is not a cure. She also has me on 2

grams of Valtrex a day, but I probably need to add Valcyte and she is

a bit nervous about that at least until we see what the HHV6 looks

like.

The worst thing is trying to think - I get so confused and forget

words. The few hours and occasional day when I am headache free I

feel quite good and normal with no brain disfunction. This is

somewhat like cfs but yet again not like my past experience.

I will be away two days. I don't care how bad I feel I have a writing

critique up at Reno, and I intend to be there. I am working on a

novel, and I want to hear what they say about it. (Now you see why

they think I am not so sick. I am just too stubborn to give up and

surrender my life.)

Back Friday.

a