had enough
Tische & David Deakin
Dear Sandi,
There is nothing I can say to make it better I know, but just to say
thinking of you in this bad time with this dd and wishing wishing wishing
you well.
Take care,
Tische.
Michelle d'Anjou
Barb, Sandi, & all "had enuf'ers":
I just want to tell you folks that I too have used this forum to scream
and cry and bitch and moan, more than once. That's part of what we're
here for.
I strongly recommend to *everyone* to read Dr. Jacob Teitelbaum's "From
Fatigued to Fantastic" and to give it to yuor doctors. I have been on
his protocol since last Dec., and there is no doubt that I am showing
and feeling improvement. Helen of cheese and beer land <g> is on it
too, and I know she has mentioned it here before. (Helen, I hope you
don't mind my mentioning your name. You are always so supportive of
folks, and I know that you have benefited from Teitelbaum's suggestions
too).
This is not a miracle cure or anything, it is simply a collection of
ideas of cause and effect of this DD, by a doc who says he had CFS
himself, and who has conducted patient studies. It is a somewhat
complicated set of recommendations, in terms of trial and error and a
lot of blood-work, to find out what works best for you.
But right now I am working part-time, both at an office, and doing
*housepainting*!! - my fibro pain is almost gone; I have minor joint
pain in my hips and knees and wrists. I still run low-grade fevers, but
my energy and stamina and brain function are all better. I do not
"crash" for the day until I have exerted myself physically or mentally
for about 4 hours. Then I have to rest. I never work more than four
hours a day. I still stay in most nights, and rest up for the next day.
I still sleep about 10 hours a night, and get to work between 10 and
noon, depending on the day. But i am able to fix meals, wash dishes, and
even have done some projects around the house like make some throw
pillows, and bake pumpkin bread. And I had a container garden on the
back porch. This is the first year I've lived alone with this DD too,
so the first time there's been no one else to cook clean or drive.
But i can so relate to the frustration and loneliness and fear
expressed in this thread, I just wanted to contribute my little bit of
hope and minor success. And give you all a big {{{{{{{{{{cyber
hug}}}}}}}}}.
As Helen always says, never give up, and never stop yelling for help
either!
hugs,
Michelle
sandra allen
I too have had more han enough. I am ready to throw in the towel.
Little help from the support groups I've gone to, little help from govt
or researh. I am 52 and will be dead before a "cure" or semblance of a
cure is found. I am not allowed to vent my true feelings. I cannot
vent at home because I have only my cats and I do not yell at them.
However, They are very adept at licking my tears away. But Dr. Jack
has relieved more than one PWC and he is only a plane ride away.
Sandy Allen - Sassichatz Cornish Rex
Isaiah 40:31
I do not know what the future holds,
But I do know Who holds the future.
Kim Shinall
Barbara wrote:
>
> I have had enough. This is driving me mad. The aches the pains the
> headaches the panic and the depression...
>
> I would really like to have my own life back again. I would like to get up
> in the mornning and be able to do the things that I used to do. I would
> like to have my children be able to give me spontanious hugs...
>
> I want me back again..
> sorry didn't mean to explode you all like that. My doctor has had to go
> away, and two of my support people have had to leave town.
> I guess I am feeling sorry for me.
> Barb
Good job venting! We all need to vent sometimes. I know that I
sometimes just need to be "on my pity pot" for a bit -- which is a
singularly unsatisfying thing if there's no one there to share it with.
I have a friend who has lived with god-awful pain for almost 40 years
and she has taught me a lot about that. And a friend with Behcet's
experiences the same level of fatigue and pain that i do. Commiserating
with them is sometimes exactly what I need, rather than a loved one who
is "healthy" (tho their support goes a long way, too!) This group is
great for that; don't ever apologize. Any of us can choose not to go
on-line if we're not up to it, or leave the messages we aren't up to
handling for later. Plus, the good news is that as spread about as we
are on the planet, not everyone is having bad weather at the same time
;>)
Hugs to you, and keep on venting to us any old time you need!
Ann B in Virginia
Helen Dobberpuhl
Sandy,
I am concerned because in several of your posts you
have mentioned that "Dr Jack" is only a plane ride away.
I'm sure that none of us here would like to have you
make that one-way trip. You are "allowed" to vent your
true feelings here. So tell us what exactly has made you
to feel so desperate? Is it the pain, the sleeplessness, the
fatigue, the lack of support from family? Whatever it is
please vent your true feelings here. People here will try to
help you find other solutions because Dr. Jack's solution
is an irreversible one. Or write to me back
channel because I also know Who holds the future.
NEVER GIVE UP! <>< <>< <>< Helen D (in Wisconsin)
(PWC 15+ years, 80% recovered)
Psalm 54:4 "The Lord is the one who sustains me."
L. RON SCHULTZ
I have a thought. Lately several medicines used for one thing have been
sited as usefull for another thing. I wonder, given that cfs may be a
distant cousin to aids, maybe some of the aids helps would be usefull for
cfs. What have you got to loose by trying?
RON
sandra allen
Ron, thanks for the idea but "been there, done that , got lots of
T-shirts." In fact, so many meds and protocals were tried that my
insurance cut me off after spending 4 1/2 million of their dollars. Mr
MD is Calif was vry aggressive withe this DD and we ried things that had
to be approved by ins. mediator before beoing done. I was on 8 hr daily
IV infusion with a Morphine pump for pain when I suggested we try AZT
since there were so many parallel symptoms. The dose I needed monthly
cost (Sit down, first) $976 and change. Yes I felt better but I can't
afford that. I am presently on Medicare -which doesn't pay for Rxs or
even a shower chair. So any new protocal that opens up for PWCs is
petty much closed for me because of financial reasons. There is not
enough time nor paper to list what I've tried but let's just say that I
have enough drugs to open my own pharmacy. But I do appreciate the
thoughtfulness of your suggestion. I just can no longer do the follow
through. But thanks again.
sandra allen
I have a "friend" who chooses not to work unless he needs $ for
somethng. He checks on me every few days to see if I've eaten or if i"m
still alvie. I really though he understood what I was dealing with and
I have to say, he does a lot for me. He drove me to and from hospital
when I had surgery, fed my cats and makes sure I eat. He usually does
this when he has no other plans which is fine because there is no
commitment - only a strange friendship Usually he can tell by my color
if my day is a bad one. The problem is that when I verbalize my pain,
cry or whatever, he begins telling me about his aches and pains. He is
grossly overweight and could physically work but doesn't want to get
involved in "the System" so unless it's a cash job, he doesnt work. I
know I shouldn't look a gift horse in the mouth, especially in my
circumstances, but how do I explain the difference in aches and pains
such as he says he has to what I am dealing with. He even refuses to go
to the Health Center for medical help because it's the system again.
Actually, he is one of the reasons I am moving out-of-state and he is
doing the moving but how do I deal with this in the meantime? Any ideas
would be appreciated greatly. TIA