[SteveD (OP)]

Check in:

Challenging day...My daughter has a serious staff infection and needed to be taken to the hospital for treatment. I raised her by myself and her welfare is important to me.
No pre or post orgasmic illness symptoms today, just life on life's terms...and it's a beautiful, breezy day her in SF, for which I am grateful

Girlwind,

Food is a big issue with me so I started another thread 9 days ago for people interested in using wheatgrass as a healing food. Check it out and see what you think.

Steve

http://www.thenakedscientists.com/forum/index.php?topic=20278.0

[girlwind]

Girlwind,

Food is a big issue with me so I started another thread 9 days ago for people interested in using wheatgrass as a healing food.
Check it out and see what you think.

Steve

Hmmmm... wheat grass is not that interesting of a topic to me. I eat what I feel I need and don't try
to be too strict about it. Right now my main focus is on getting my hormones balanced. Many years
(30 actually) of supplements and all organic eating routines have NOT done the trick to heal me of
CFS or POIS, so it was time to expand my repertoire to the bio-identical hormones and see what they
can do for me.

I am beginning my fourth week of HC (hydrocortisone) and feel a little more stamina than usual. And
soon I will add the thyroid hormone and see what happens.

Good luck with the wheat grass, and with the skeptics who are arguing with you about its effectiveness.   []

[SteveD (OP)]

Hmmmm... wheat grass is not that interesting of a topic to me. I eat what I feel I need and don't try
to be too strict about it. Right now my main focus is on getting my hormones balanced. Many years
(30 actually) of supplements and all organic eating routines have NOT done the trick to heal me of
CFS or POIS, so it was time to expand my repertoire to the bio-identical hormones and see what they
can do for me.

I am beginning my fourth week of HC (hydrocortisone) and feel a little more stamina than usual. And
soon I will add the thyroid hormone and see what happens.

Good luck with the wheat grass, and with the skeptics who are arguing with you about its effectiveness.   []

Girlwind

I'm used to fools, so I don't listen much to them.

I'm quite interested in pursuing the hormonal possibilities. I called my 'home' clinic Glide Memorial ,yesterday and the Endo has asked the Nurse Practitioner a question that apparently she must answer before he agrees to the appointment. Anyway that's what the gal in charge of appointments said yesterday, So we'll see.

Good luck on the HC . Let me know how that works out for you.

Steve D.

[girlwind]

Girlwind

I'm used to fools, so I don't listen much to them.

I'm quite interested in pursuing the hormonal possibilities. I called my 'home' clinic Glide Memorial ,yesterday and the Endo has asked the Nurse Practitioner a question that apparently she must answer before he agrees to the appointment. Anyway that's what the gal in charge of appointments said yesterday, So we'll see.

Good luck on the HC . Let me know how that works out for you.

Steve D.

I'm glad that "the fools" don't tweak you out too much. That's a good thing.

HERE'S MY THOUGHTS ON "DIET"

Diet is so BIG of a topic, one that I have explored SO MUCH in my past, that I'm not inclined to give it
much more of that obsessive attention I used to. I probably tried all the fad New Age diets at one point
or another--from macrobiotics and being vegan, to egg-and-fish only vegetarianism, from all cooked
food with lots of medicinal herbs (TCM inspired), to all raw (which lasted about a week, due to the fact
that I was FREEZING COLD from it).... etc....

I was so ill and so debilitated that I would have tried ANYTHING that anyone suggested in order to get
my health back. Even standing on my head and gargling with peanut butter! But I have to say that no
diet was enough to correct some of the BIG imbalances in my body. No matter how "perfectly" I did the
diets, they all failed to heal me of CFS. They just were NOT enough. (That's where the supplements and
Chinese herbs and acupuncture did help--without them I would have remained mostly void of energy.)

After 20 years of listening to other people's theories and ideologies about what was RIGHT & WRONG to
eat, I finally got to a place where I began trust my own body and my very clean palate to tell me what I
needed. At this point I haven't eaten "junk"--sugar loaded, processed foods, and hardly anything in a
"package" for a few decades. I eat all fresh, organic, and mostly cooked food in winter; much more raw
food in warmer months. I avoid grains, eat few  "sweets," like fruits and sweet vegetables with a high
glycemic index (carrots, beets, parsnips), alcohol and stimulants with caffeine or chocolate, except on
special occasions. The sugar content in those foods does not work for my metabolism, and I know that
because I almost always become hungry after a predominantly grain meal, or one where there is too
much "sweet" food. The mainstay of my diet is vegetables, both raw and cooked, and decent amounts
of protein from animal sources at each meal--eggs, meat and some raw goat dairy products. In winter
I long-cook big pots of soup--with the bones, and lots of garlic and spices added to keep me toasty and
warm. And in summer I make big rich smoothies: my favorite is with avocados, tomatoes and cukes fresh
from my garden, a little salt, and lots of cayenne powder. I call them guacamole smoothies. Those are so
good, and as filling as a big meal.

Mostly, I eat as above, but I'm not rigid about my own rules. If my body says... I need bananas... then
I go out and get some, and eat one a day until I feel the craving diminish. I know when I eat the "wrong"
thing for me, because my body will tell me LOUDLY by: 1) an obvious drop in my energy 2) a negative
change in my mood, like in cranky and/or depressed not long after eating, or 3) a feeling of not being
satisfied, of having on-going hunger and food cravings soon after a meal.

Wheat grass comes and goes for me, as necessary. If I want it, I can buy it fresh squeezed at the deli at
the health food store. But my preference is fresh wild greens--picked in early spring. My partner knows
where to find the best ones: nettles, sorrel, fresh radish and mustard greens. They are coming up right
now. And.. these last two weeks I have been jonesing for the collards from the farmer's market--yum!
So good cooked with a little olive oil and some garlic!

So that is my treatise on food. I have said enough, and now I'm off to cook my special recipe for Indian
style curried chicken.  I'm having some guests for dinner tonight--my birthday was this week. Bon appetite!

[SteveD (OP)]

HERE'S MY THOUGHTS ON "DIET"

>>>>I was so ill and so debilitated that I would have tried ANYTHING that anyone suggested in order to get
my health back. Even standing on my head and gargling with peanut butter!

LOL!!!!!!


>>>> But I have to say that no
diet was enough (That's where the supplements and
Chinese herbs and acupuncture did help--without them I would have remained mostly void of energy.)

I do acupuncture four times a week and drink a Chinese herbal teas made of 12 herbs and roots and drink four ounces three times a day...really helps.
As far as supplements I take iron, B-12, vitamin D, cod liver oil in the morning and again at night cod liver oil, Multi vitamin , B complex and tonight added C and nutritional yeast


>>>>After 20 years of listening to other people's theories and ideologies about what was RIGHT & WRONG to
eat, I finally got to a place where I began trust my own body and my very clean palate to tell me what I
needed. I eat all fresh, organic, and mostly cooked food in winter; much more raw
food in warmer months.

That sounds like wisdom


>>>I avoid grains,

me, too


>>>eat few  "sweets,

ditto


>>>no alcohol and stimulants with caffeine or chocolate,

I can't do any of these. I have a very strong allergic reaction


>> In winter I long-cook big pots of soup--with the bones, and lots of garlic and spices added to keep me toasty and
warm. And in summer I make big rich smoothies: my favorite is with avocados, tomatoes and cukes fresh
from my garden, a little salt, and lots of cayenne powder. I call them guacamole smoothies. Those are so
good, and as filling as a big meal.

This sounds delicious


>>>>>Mostly, I eat as above, but I'm not rigid about my own rules. If my body says... I need bananas... then
I go out and get some, and eat one a day until I feel the craving diminish. I know when I eat the "wrong"
thing for me, because my body will tell me LOUDLY by: 1) an obvious drop in my energy 2) a negative
change in my mood, like in cranky and/or depressed not long after eating, or 3) a feeling of not being
satisfied, of having on-going hunger and food cravings soon after a meal.

There is such intuitive wisdom, here


>>> But my preference is fresh wild greens--picked in early spring. My partner knows
where to find the best ones: nettles, sorrel, fresh radish and mustard greens. They are coming up right
now.

Where does he find these things?


>>>my birthday was this week

Happy Birthday


>>>>>So that is my treatise on food.

Thanks Girlwind that was delightful

[SteveD (OP)]

My partner and I agreed, at my request, on a 'rest day' today...No arousal behaviors. I needed to garner my energy for a big teaching day tomorrow.

We went to church instead, did yoga for an hour together, I practiced Hendrix tunes I'll teach tomorrow while she cleaned up the dinner I made her while she napped earlier.

It was a very nice night...

POIS is dead and buried and I am free...

[girlwind]

>>> But my preference is fresh wild greens--picked in early spring. My partner knows
where to find the best ones: nettles, sorrel, fresh radish and mustard greens. They are coming up right
now.

Where does he find these things?

Thanks Girlwind that was delightful

Many greens can be found growing wild all over the Bay Area. You just want to be sure to pick them
"off trail" so they aren't contaminated by car exhaust, dog piss, etc. I'm sure the Mt. Tam area has lots.
They're growing rapidly right now because of the recent rain, and will be too big--less tasty and more
tough if they're picked at a later stage in their growth. I'm lucky that my partner is a naturalist and has
a lot of experience picking wild foods--mushrooms, greens, and blackberries in summer, with which
he makes the most amazing desserts. I am less knowledgeable about these things, but learning as I go.

[SteveD (OP)]

Check in:

My partner and I have agreed to another 'rest day' today and I will request another for tomorrow (Monday) because I am going to do a large public speaking event. I find consistently that when I need extra sparkle in my personal performance that I can reach down deep inside of me and find it in the restrained, pooled, redirected energy that is sexual energy inside of me. I am so grateful that I have this energy revenue source...Not that I don't love sex, I surely do!

Steve D.

[girlwind]

I find consistently that when I need extra sparkle in my personal performance that I can reach down deep inside of me and find it in
the restrained, pooled, redirected energy that is sexual energy inside of me. I am so grateful that I have this energy revenue source...
Not that I don't love sex, I surely do!

I see sexual energy like extra money in the bank. If you spend it unwisely, you're "screwed." AND you pay for it
later. I'm glad you have the discipline  to manage it like you do. Me too. I can't afford the loss it entails when I'm
wasted from an orgasm. Even though I have made progress, it's still nebulous and I don't want to risk the level of
exhaustion that comes when my body can't afford to lose that reserve. I'm hoping my ongoing hormone therapy
will resolve this and give me back the energy I need not just for sex, but for better overall functioning. That would
be a real healing for me.

[SteveD (OP)]

I see sexual energy like extra money in the bank. If you spend it unwisely, you're "screwed." AND you pay for it
later. I'm glad you have the discipline  to manage it like you do. Me too. I can't afford the loss it entails when I'm
wasted from an orgasm.

Girlwind,

To be perfectly frank, your capacity to manage your sexuality ( here defined as being sexual, but not orgasmic) is what attracted me to your "recovery" from POIS  above all the others I've communicated with online about this subject. Your willingness to let go of what was hurting you and yet stay faithful to your relationship is commendable and noteworthy...Hell, it's just plain, old fashioned courage.

Steve D.

[girlwind]

I see sexual energy like extra money in the bank. If you spend it unwisely, you're "screwed." AND you pay for it
later. I'm glad you have the discipline  to manage it like you do. Me too. I can't afford the loss it entails when I'm
wasted from an orgasm.

Girlwind,

To be perfectly frank, your capacity to manage your sexuality ( here defined as being sexual, but not orgasmic) is what attracted me to your "recovery" from POIS  above all the others I've communicated with online about this subject. Your willingness to let go of what was hurting you and yet stay faithful to your relationship is commendable and noteworthy...Hell, it's just plain, old fashioned courage.

Steve D.

Thank you for the compliment. It's really not hard to make efforts to steer clear of pain and exhaustion. My 30
years with CFS has been the MAJOR challenge. POIS, in contrast, is a piece of cake.  (pardon the sugar)  []

I feel VERY VERY blessed to have a (male) partner, who is cooperative with both my low energy and my POIS.
There are not a lot of men who would be content to reframe their definition of "intimacy" in the way that my
partner has been willing to. Most people, especially men, want their sex "plain and simple," without all the fuss
and complications of a health issue attached.

[SteveD (OP)]

I feel VERY VERY blessed to have a (male) partner, who is cooperative with both my low energy and my POIS.
There are not a lot of men who would be content to reframe their definition of "intimacy" in the way that my
partner has been willing to. Most people, especially men, want their sex "plain and simple," without all the fuss
and complications of a health issue attached.

I, too, am grateful for my partner's willingness to negotiate and be flexible around this difficult sexual issue, pre and post orgasmic.


Steve D.

[SteveD (OP)]

Spoke tonight and it went very well. The rest days were fraught with difficult emotional challenges, but the fruit was that , after I spoke tonight, my daughter asked if she could come back again and considered joining this spiritual fellowship.I wept with gratitude...

I beat the pre orgasmic disease to death the last three days and got this gift of the possibility of my daughter's health as a result.

Cool...


Steve D.

[SteveD (OP)]

Girlwind,

Called my nurse practitioner today to see what the hold up is with my Endo appointment, but got no reply...You can't push a rope

Steve D.

[girlwind]

Hey Steve--Just an FYI for you. I heard that zinc deficiency can cause a loss of smell. Martin from the POIS forum told me
about this. I thought it might be helpful for you, after reading the wheat grass forum.

[SteveD (OP)]

Hey Steve--Just an FYI for you. I heard that zinc deficiency can cause a loss of smell. Martin from the POIS forum told me
about this. I thought it might be helpful for you, after reading the wheat grass forum.

Thanks Girlwind,

Emailed Martin. He seems like a kind and gentle man.

Steve D.

PS...My Endo apparently will not see me as he believes that POIS is 'not and endocronological problem'
What are ya gonna do?

[girlwind]

Hey Steve--Just an FYI for you. I heard that zinc deficiency can cause a loss of smell. Martin from the POIS forum told me
about this. I thought it might be helpful for you, after reading the wheat grass forum.

Thanks Girlwind,

Emailed Martin. He seems like a kind and gentle man.

Steve D.

PS...My Endo apparently will not see me as he believes that POIS is 'not and endocronological problem'
What are ya gonna do?

Martin can be very helpful. He's a good researcher.

Sorry about the endo. But it doesn't surprise me. They are known as the "accountants" of medicine. Not exactly open-minded
when it comes to a patient's symptoms and subjective experience, and more focused on DATA and numbers. You might have
to just do all the tests through a regular GP or go to MyMedLab.com and order your own tests. Once you have some documen-
tation, the endo MIGHT be more open to you. If not, a good naturopath can help, as they are allowed to prescribe bio-identical
hormones.

[SteveD (OP)]

Girlwind,

Let me ask you a question.

At first , on a feelings level, I felt  hurt and kind of shut down by the Endo's refusal and a little shamed by his claim that POIS is a sexological problem, not an endochronological problem.  But I've been meditating on that a bit...

I know you love and care for yourself an a heroic manner and I respect that greatly, because I do that for myself as well. What caught my attention about your shares/posts was that you had the raw guts to stop being orgasmically sexual, because it was hurting you and, at the time , there appeared to be no other sure solution to this disease...and I respect that, because that 's what I do. I've also heard you say that POIS is only one of your health challenges and, if I remember correctly, not the main one. I, too, have many ,many health challenges, this only being the latest. After reading your personal posts for over two months I am now fully convinced of the wisdom and value of all the testing that is available and I am doing everything I can to avail myself of those results, and will continue to do so.

All that being said. Suppose that this Endo is right and that the whole POIS forum is way off the trail here. Suppose this is like alcohol for alcoholics or sugar for food addicts and is simply something that should be refrained from...as you and I are actually doing. Suppose that the endo testing is wise, useful, self-loving and important for our health, but that for us POIS sufferers, if we are to be truly well, that we must simply let this behavior go.

I love the truth, no matter how terrible it my be...and I was just wondering what you thought about all this.


All that being said, The Waldinger testing that he refers to at the end of his treatise. Can you tell me what those tests were designed for?


Respectfully and lovingly yours,

Your friend,

Steve D.

[girlwind]

Hi Steve--

I appreciate your sincerity and openness about your experiences. I thank you for being supportive of mine as well.
As for the Endo's refusal... I understand your hurt feelings, but really this is a very predictable thing. I have been
on SEVERAL other forums over the past year, looking to find answers for my multi-health issues, and I can tell you
there are literally THOUSANDS OF PEOPLE out there COMPLAINING ABOUT POOR HEALTH CARE and INEPT DOCTORS!
I can't begin to stress this enough. It's actually quite frightening. Just yesterday on the POIS forum, Limejuice posted
his experience with an endo that he had to be VERY aggressive with in order to be heard. Fortunately, he actually
got what he wanted! Which is, UN-fortunately, not the usual case.

What I've learned along the way with searching for answers to my hormonal issues is that if you have ANY kind of
imbalance in that area (thyroid, adrenal, gonadal, etc), you'd better be very diligent at doing your OWN reading and
research about it, getting your own blood work done in whatever way you can, and knowing as much as you possibly
can about your condition before you go to a doctor. Those people who've been the most informed on their conditions
have definitely fared the best at both FINDING a doctor who will take them seriously and GETTING the HELP that they
need from that doctor.

When you consider the staggering number of people who aren't getting their thyroid addressed, it's truly frightening.
The statistics state AT LEAST 13 MILLION CASES IN THE US OF UNDIAGNOSED HYPOTHYROID. Which puts you at more
than two times higher risk for having a heart attack!  WHY is this happening? All because most doctors (including the
endos) do not give people the most definitive tests to uncover a thyroid problem--the Free T3 and Free T4. They are
so cemented into the TSH being the great holy grail of tests that they remain glued in to their agenda, even when it's
not working to help their patients.  You can read more about this from the sites I have posted below.

http://www.stopthethyroidmadness.com/
http://www.thyroid-info.com/articles/mercola.htm
http://www.thyroid-info.com/

For me personally this adventure into learning about my hormonal imbalances has been a real eye opener, as I am
one of that 13 MILLION statistic above. For all I know my hypothyroid could be one of the MAIN reasons for my 30
years worth of CFS. That's 30 years of 17 doctors MISSING the diagnosis because none of them bothered to do the
right tests! As I proceed through with my treatment of the thyroid it is certainly becoming very apparent what a big
role its dysfunction has played in my ongoing exhaustion. And that is only ONE of the hormones that showed a de-
ficiency in my blood work. I am also low in cortisol, testosterone, DHEA, estrogen. Though for now I am staying
focused on just on the thyroid and adrenals. I don't want to overwhelm my body with too many changes at once.

As for the endo's conclusion that this POIS thing is a "sexological"problem, I personally don't buy it. But that does
not mean I intend to push for orgasm at all costs. I intend to avoid it as much as I can UNTIL I have all my hormones
coming back to an optimal range.  Sometimes I have noctural orgasms, which I can't control, but that's when I have
the opportunity to see how my body fares after such an "event." And I will say that there is definite improvement on
the post orgasm exhaustion. Yay! After all that work, it's good to know the effort has SOME payoff.

My angle on this, Steve, is that POIS is just the tip of the hormone iceberg of problems that I have. I'm going to leave
absolutely NO STONE UNTURNED to find the balance my hormones need, and probably have needed for three very
long decades. It's going to be a long ride I know, but at this point I feel settled in for the journey.

[SteveD (OP)]

I appreciate your sincerity and openness about your experiences. I thank you for being supportive of mine as well.
As for the endo's conclusion that this POIS thing is a "sexological"problem, I personally don't buy it. But that does
not mean I intend to push for orgasm at all costs. I intend to avoid it as much as I can UNTIL I have all my hormones
coming back to an optimal range. 

Thanks Girlwind.

>>>>I intend to avoid it as much as I can UNTIL I have all my hormones
coming back to an optimal range. 

That's what I'm doing. I am treating it as though it is sexological, but, I am willing to being open to a hormonal solution if there is one. What I will not do, and I see you not doing as well, is engage in self destructive sexual behavior. For me, doing that is sexually addictive behavior and is not endochronological... but rather, clearly, sexalogical.

I am going to call my nurse practioner again today and request she send Waldinger's treatise to the Endo. In order that I be more prepared, can you tell me exactly what the tests below mean that Waldinger used on his two patients ?


Laboratory investigation was normal, apart from features of primary tes-
ticular insufficiency; total testosterone 8 nmo1/1 (ref. 8.3–34 nmo1/1) , free
testosterone 30 pmo1/1 (ref.: 45–108 pmo1/1), dehydroxytestosterone 0.62
nmo1/1 (ref: 0.90–3.70 nmo1/1), LH 5.7 U/1 (ref: 1.5–12.0), FSH 25.8 U/1
(ref: 2.0–8.0), prolactine 210 mU/1 (ref: 75–275 mU/1).


Endocrine investigation revealed eugonadism: total testosterone 14.8 nmo1/
1 (ref 8.3–34.0 nmo1/1), SHBG 20 nmo1/1 (ref 20–55 nmo1/1), LH 3.2 U/1
(ref: 1.5–12.0), FSH 4.6 U/1 (ref: 2.0–8.0), PSA 0.4 μg/1 (ref < 4.0 μg/1).


Thanks in advance,

Steve D.