To RIKA
sharon
e-mails. I hope you are doing well.
Sharon. :]
Rika Kageyama
[I reply to this thread]
Very kind of you! I have not been able to reply to your
private message in June: I have managed to do ok but
the life has been hectic :(
But, the point is that I have done my best :-)
Onwards, upwards!
Big Hugs,
Rika
sharon
So wonderful to hear from you. Keep on keeping on. You'll make it. I don't
remember how long you were ill.
Try writing to me again at - dasha...@aol.com
Sometimes this stuff gets a little a better as time goes on. Keep moving
forward.
Miss you.
Sharon. :]
Rika Kageyama
Sorry! I must have hit the "reply-to-all-button" in my former
message. I was surprised to see my message appeared twice.
LOL
Hi Sharon,
Thank you :-) I still keep your message (sent in June) in my
mail box so, I will write you back as soon as my situation,
having been heck bothered by the medical doctors here so much,
will be settled down.
>I don't remember how long you were ill.
My CFS had started in 1979, when I was 15 years old. So, I have
been sick for 30 years. Recently, in 2005, "I" found that I developed
the autoimmune disease called Relapsing Polychondritis (abbreviation
is "RP" or "RPC". It is thought one of the auto-immune diseases. The
RP diagnosis was given by four different Rheumatologists at main
hospitals in Japan, in Tokyo and in Kyoto. My onset was thought in
1995.)
Well, the RP seems to be dealt with in a very important manner in
West, but "in Japan"...! The most impressive words I had heard from
the doctors (at some famous university hospital, Rheum dpt) was,
"I will trust your saying when if I see the (dead) body." Thanx.
Another interesting episode is that one of the top medical universities,
Rheum, here told me "The CFS diagnosis was simply misdiagnosis".
It was three years ago. I felt nonsense (rather hilarious). I have had
NO other symptoms except CFS for 15 years from my initial CFS
onset. I still carry the "CFS brain" you call here. Mine started from
"the" CFS, all of you do know very well. Although I don't say everyone
in the CFS patients could develop the serious conditions, some of us do.
As Rita in England and others did, as all of you have read on this list.
Do the medical doctors still call the CFS that developed to the serious
condition or/and other diseases which has name on it "misdiagnosis"?
Once again, "nonsense". The CFS itself is real and very serious disease.
(The range of the severity is big but, CFS is the REAL disease.)
Well, nothing has been changed in my life since 1979. Reason?
Because of the normal results from the blood tests: It has been
"normal" when I was "obviously" having the "systemic inflammation"
(Means, I had the full blown symptoms of the relapsing polychondritis
associating with the high fever, over 39 C =102.2 F). That means,
I still keep hearing the nice words, "all in your mind" from the
Rheumatologists due to my normal blood test results.
I started to believe, from my heart, that the medical doctors must
want to kill the patients. (You know what I mean.) I don't think
that my 30-year is short or that I am lack of patience as one of the
famous Rheum professor kindly pointed out for me in the end of
June this year, about five months ago.
I vent "here". Because I wanted to let you know about the meaning
of the "blood tests", THE one that the medical doctors have
superstitiously believed in; this does NOT express everything.
> Keep moving forward.
Yes. Let's move, move, move!!
(Keep kicking the butt of the doctors!)
> Miss you.
Me, too. I will write you when I will be ready :)
Hang in there, to all.
Huge Tsunami Hugs across the ocean,
Rika
------sharon wrote:-----------
Hi Rika -
So wonderful to hear from you. Keep on keeping on. You'll make it. I
don't
remember how long you were ill.
Try writing to me again at
Sometimes this stuff gets a little a better as time goes on. Keep moving
forward.
Miss you.
Sharon. :]
Anita Haviland
It may be you don't remember me, but this is my third time joining the list. I think I was number 58 or 60 originally in the early 1990s. Eventually, it took too much of my "up time," so I backed off until maybe 2007, I think. Then I left after a breast cancer diagnosis. I'm fine now, no spread.
However, CFS is back again, with a pretty nasty relapse. I know how to handle it, with supplements and waiting patiently, not doing much of anything... and so it goes for us all.
Good news isa that I have PCP here on the coast in Maine who is working actively with me on PCR testing and how to handle things. I think the article on Co-Cure about mitochondrial deficits really started her being more active. I had material on a CD to give to her, too, but that one I printed out, and she started reading it as soon as I handed it to her. So, things are happening at long last!
I've had IT since 1987 actively, but the very early exercise avoidance started in the spring of 1961, I think. Up until that winter, I had been rather athletic.
That's the briefest history of CFS and me I have ever given.
Hugs to all,
Anita