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My Recovery Journal Continues !
Ok...so I only "journalize" once a month *S* Life goes
on at such a hectic stressful pace these days its all I can do
to keep up with the simple day to day things !
Sometimes I feel as it is me though. Perhaps I am just not as
good at keeping up as I used to be! Falling behind at the ripe
old age of 37. Alas, many days I feel twice that age, today being
one of those days.
03/03 marks five months on natural compounded hormones (0.625mg
triple estrogen, 100mg progesterone & 2.5mg testosterone). While
many of the less debilitating symptoms (hot flashes, night sweats)
are gone (thank you!), libido is still only marginally improved.
Joint pains are still present but much less severe than before. I
believe I am more tired now than I ever was. Tired everyday...all
day long...feel as though I could close my eyes and go to sleep at
any given moment. NO energy, its all I can do to make it up the
flight of steep stairs to my second story apartment after work these
days. *big sigh* I even faltered a little on the first step tonight!
I have tried many things to improve my energy levels, body aches (oh
yea, still got those, feel like I'm getting the flu many days), and
joint pains, besides the natural hormones, since October when I began
fighting these problems with a vengeance, I've tried:
Therapeutic massage, shiatsu treatment for depression & fibromyalgia,
getting a new mattress, going on a detoxifying diet (been doing that
now for a month and have lost 12 lbs.), only fruit in the morning (any
amount barring citrus), protein and cooked vegetables for lunch and
carbs and vegetables for dinner, cut out artificial sweeteners entirely
and any chemicals applied to skin in the form of lotions, perfumes
etc., taking no meds except nhrt and vitamins, I've tried acupuncture,
noni juice (no improvement from that yet either), began mild exercise
(exercise bike) when I'm not too exhausted to get on it, taking good
menopause formula vitamins and this last week added an herbal
supplement containing: st johns wort, ginkgo biloba, Siberian ginseng
and ginger ( I gotta do something to get some energy!!!).
Nothing has worked as far as fatigue yet...I still have hope though
and will not give up (unless I fall asleep first *S*).
One would surely think with all these lifestyle improvements I would
be feeling better, but, like I said I'm more tired than ever. I know
I need to reduce my stress level yet, I'm sure that is a contributing
factor. I just have to find the missing key to this puzzle of hormone
replacement or whatever it is I am lacking.
On April 12, I go to a sleep study center to be evaluated for sleep
apnea and narcolepsy ! Interesting consideration! My doctor recommended
this back in January when I was there for follow up regarding hormone
therapy. When discussing lingering fatigue, she asked if my husband
complained of me snoring (he did) so she thought that was worth
checking out and ruling out at least as a possible cause for exhaustion.
I agree, always better to rule out other factors. Should be interesting!
I still tend to think it is lack of hormones or adjustment related
or possibly thyroid related, guess that will be my next investigative
cause if the sleep tests reveal nothing significant.
Imagine that....narcolepsy....a neurological disorder....probably what
will be wrong...I always have wacky things wrong with me that doctors
say oh, that's not very common, I'm sure that's not what it is !...that's
what usually it turns out to be in my case.
Will keep you posted! In the meantime, I think I'd better take my
own good advice and write to Carol Petersen at Women's International
Pharmacy and discuss remaining symptoms and possible dosage
adjustments to nhrt.
Woke up this am at the usual hour of 5:30am, hit the snooze button
as I usually do these days cause its so hard to drag myself out of bed.
(I did not used to feel like this!! I used to jump out of bed (well,
not quite jump :o), but get up when the alarm went off, feel pretty
rested and cheerful and get on with the day.) Oh, where, oh where
did those days go ??
Well, this day, I awoke hurting all over, I was still half asleep and
I thought "I am not getting up out of this bed until I stop hurting so
bad", so I lay in bed for another 45 minutes, until I could no more or
be late for work. Oh, how I hate waking up in pain. I continued to feel
sore and achy all day :o( I almost feel like I'm coming down with
the flu continually. Another symptom or host of symptoms to try and
get solved. Makes me tired just thinking about it!
And on that note, I say good night!
Tuesday, April 06, 1999 06:56:29 AM
Fatigue still bad, joint pains coming back :o(
While at health food store 04/02/99, asked the clerk if they had
anything she recommended for fatigue, told her thought I had CFS
or Fibromyalgia, she showed me a few herbal products one of which
was Rhodiola Rosea, she thought it might be worth a try, began taking
it Friday, 2 capsules daily.
Also started taking the Glucosamine sulfate again last week, I'm
sure I need it and sure it will probably help, it seemed to give me
gas or digestive problems before.
Had my massage as usual yesterday, have had trouble with left hip
pain again over the last week and a half, plus various other joints
hurting sporadically - knees, ankles, hip, back, feet, plus just
aching all over and hey...! guess what!
Today is the first day I've wakened and not been really badly
stiff and sore all over, matter of fact, can't notice anywhere
that I hurt right now...plus, I feel kind of awake...!!!
I noticed feeling a little more alert yesterday, but feel more so
today and more like myself, like I'm not in the "fog", hmmmmmmm!
Dare I be hopeful?? no....will just enjoy it for each moment that
it lasts and see what happens, well, I'm off to work now.
Well...this is my story today....Saw new primary care doctor 4/7
since the last one discharged me, you read all about that already
New doctor was nice, she's an internist, she listened patiently to
my ongoing saga of post hyst/ooph health complaints - severe
fatigue, joint pains that disappeared within a month of taking
natural compounded hormones, but then came back, (0.625 tri est, 100mg progesterone &
2.5mg testosterone since 10/03/98, took 2x daily until 01/99 then
increased to 3x daily per consult with WIP and then primary care
doctor), back to lingering health problems, also, stiff and achy
all over in the morning, tired when I get up, tired all day long,
all I can do to drag myself up the flight of stairs to my second
story apartment after work, low libido, depression off and on, mood
swings I guess you'd call them, irritable. So when I go over all
this with her, she first says I'm tired because I smoke, tells me
about the carbon monoxide that attaches to red blood cells,(I know,
I know), then of course we discuss my weight, which has gone up
by 40 lbs. since my hysterectomy. She says we need blood work (I
brought my full copied chart from previous primary care), last
blood work done 7/98.
When I tell the new doc I'm taking natural compounded hormones,
she said she would have to call the pharmacist and speak with him
directly about what they are even though I told her.
Call today from doctor regarding blood work, states all is well
and good except hormone levels, she states "Your in menopause",I'm
like ahhhhh, yeah......that I knew, but she says my levels are too
low, FSH - 64 and LH - 46, and that maybe I'm not absorbing the
hormones, stated we need to get me on something else, faintly
mentions Premarin....I told her no way could I take any synthetic
hormones, she says Premarin is natural, from horse...I say yeah...
not natural to women though, she wants to know why, I tell her my
body does not tolerate synthetic hormones, bad side effects, and
that they scare me, been on them too many years already....
she says she's not sure she believes in these natural hormones
but she will call the local compounding pharmacist and speak with
him, I find phone number for her, my daughter calls me at work
about 15 min later and says doctor called for me, I call back,
she's busy, nurse tells me "the doctor called in your prescription
at the pharmacy", I asked "What prescription?", she has to get my
chart and check, she tells me Estradiol. Nice of her to consult me!
Not that I have objection to Estraiol, but it is my body, I have had
experience with several different types of nhrt/hrt already, I feel
that to begin a new hrt, she could have at least asked/consulted
with me, I guess I'm somewhat bitter, and cynical and just a little fed up with all of this!
And I'm still sitting here wondering, don't I need saliva test for
accurate hormone levels, I asked her about that when "I" asked "Do
you think my hormone levels should be checked", since I'm having so
many problems still and am 6 months on the nhrt? She never even
acknowledged anything about the saliva test!~
Annnnnnnnnnd...to top it all off, my cholesterol is high! 220 !
Never been high in my life...up until the last year, it was 213 when
I had the blood work done last year....always, always before it was
good! 140, 150, I used to donate blood alot so I always got that
result and it has always been low. I've been a semi-veg for the last
10 years, no beef or pork, little to no fried foods or "bad fats".
Annnnnnnd....I've been on a low stress, detoxifying diet since 01/99,
which has really been working well, have lost about 12 lbs, no
problems staying with it, its really become just "the way I eat",
foods that I like to eat, pretty plain, just fruit in the morning,
a protein and cooked vegetables for lunch and a carbohydrate (brown
rice, pasta, beans, or red potato), and vegetables for dinner...I
really am happy with it, no problems sticking with it, not hungry or
have cravings.....and my cholesterol is up!!!!!
So...what if the nrht won't/doesn't work? I am so disgusted and
frustrated with this....and tired of being tired...aching and hurting
near every day somewhere....and none of these problems I had
pre-hsyt/ooph. So, what if...?! I know I can never take another
synthetic hormone again.....after that bad reaction I had to the
anti depressant/anti anxiety med, I am afraid to take anything but
my nhrt, vitamins and herbs.....so what if....and what now???! Don't
know if I'm up to another challenge with the doctor either....trying
to convince her...what...? do I go in now and tell her she gave me
the wrong hormone tests and needs to be redone? *sigh* Why!!???
does this have to be so hard? I know a doctor would tell me in
answer to that question, like the internist did, that it is because
"I" am trying to practice medicine, but! if! the doctors knew what
they were talking about in regards to nhrt/hrt and post tah/bso
health effects and had safe, effective solutions to offer, "I"
would not have to be doing all of this in the first place.
05/09/99, Well, I've missed the in between from this time writing and
the last which I will add shortly! In the meantime, have stated new
nhrt and started journal writing about my experiences with it which
are thus far, as follows: (I AM keeping this up daily, even if its
only a brief note, truly want to keep accurate track of this nhrt.
Consultation with Fred Kinnard, Lisc.Compounding Pharmacist from
Kinnard's Pharmacy, what an exciting conversation and meeting for me!
Actually able to talk to someone one on one that is knowledgeable
and an advocate of nhrt!
Fred sure knows his "stuff" on nhrt, his perception, insight and
knowledge about hormone loss and connected symptoms, along with the
many years of experience he brings. The compounding pharmacists have
become the hysterectomized/oophorectomized woman's strongest advocate
regarding complete nhrt and total wellness.
Bi Est (transdermal)and T3 Therapy
Saliva Testing - 4 hormones
Appt.with new OB/GYN (my first appt.liked her a lot!)
She did not agree to T3 therapy, but, did order complete thyroid
panel, went to lab done on 05/05.
05/05 - Pick up new prescription, nhrt,transdermal, E2 0.05/E3 0.2,
P 1.6/T 2 - apply 2 inches daily, also sm. tube of Estradiol 1.0% to
be used (pea sized dab) prn for hot flashes.
First application ! 5:30pm 05/05
*With this preparation you get an almost immediate salty taste in
your mouth after applying,then shortly thereafter a "metallic" taste.
(I don't care what kind of a taste it leaves in my mouth if it
makes me feel better!!!)
05/06 - Did saliva test first thing in a.m. (5:45am) before any
drinking, eating, brushing of teeth, rinse mouth out two times with
cool water, chew sugarless gum provided to promote saliva production.
The tube was small and more difficult to fill up than one would
think! It took me about ten minutes, sent off to lab 05/06/99.
Applied second dose of nhr 6:30 a.m as I want to put it on in the
mornings. (Its' nice not to worry about having to take those capsules
3x daily, they had to be taken either one hour before meals or two
hours after and it was hard to keep up with!). I feel more "right"
about this form of nhr than any other so far (nhr is the only thing
I will consider), I was told by another pharmacist over the internet -
that sublingual tablets would be better, I like the transdermal
route, it works well for me, dosing is easy, results will determine
and I pray that it works well for me. I would love to be able to
finally recommend something to all the women out there looking for
safe and effective hrt, it is desperately needed for those dealing
with the multitude of post tah/bso related health problems and
hormone loss symptoms.
*Today, I seemed to feel a little more "at peace" inside, despite
the fact that almost everyone at work was "cranky and scattered".
I truly feel a more overall sense of well being.
05/07 - This morning, applied nhr at 6:15am, noticed "salty" taste
not as strong today. Notice feeling not as achy and stiff this
a.m. upon getting up. *Did have backache, hip ache got massage
today, went shopping after work achey legs and very tired by p.m.
05/08 - Salty and metallic taste after applying nhr is not as
strong at all ! Woke up stiff all over, sinus headache. No negative
effects noticed with conversion of new nhr. Feeling a little
clearer mentally like some of the cobwebs are clearing :o) Grocery
shopping and p.m. shopping for dghtr's b.day. Tired and achy legs,
backache, hip pain.
05/09 - Busy today...shopping and running...hot...sweaty...bloated
feeling *yuck* hot here in FL already :o( Well all the way into day
four of new nhr already :o) Still having times of that overall well
being feeling and feeling more like my old self, doing some of the
things I used to do, like ! listen to music! have caught myself
humming, singing and smiling....having more patience and not
getting so irritable so often, I knew I was still in there
somewhere!!! And,as each day, I pray that it lasts!
05/10 - Feeling ok today for a Monday. Nothing too eventful to report.
05/11 - Tired today, which is a good thing since I go for my sleep
study tonight at the sleep lab. Have been trying to get this done
since my doctor first suggested it back in January, to rule out
sleep apnea as a possible cause of my lingering moderate to severe
fatigue that has been with me for the last year. Should be interesting!
05/12 - Well ! The sleep study was definitely interesting! You get
hooked up all over your body to be monitored for several things,
snoring, difficulty or obstructed breathing, grinding your teeth,leg
movements, awakening, talking etc. After being all hooked up and
wondering how I would ever go to sleep, I went to sleep :o) Wakened
briefly sometime during the night by the technician hooking me up
to the cpap machine, then slept till the doc came in and woke me up at 6:00am.
Episodes of sleep apnea did occur, so I am to try wearing the cpap
machine while sleeping for the next two weeks to see if it helps
with fatigue and if I am feeling better, see the doc again then and
will take it from there. If you have any questions about the sleep
study in particular, feel free to email me.
Still feeling "well" on the new nhrt, the only change I've noticed
so far is an increase in perspiration. The "crystal" deodorant
I've been using is not cutting it the same as it was, don't want
to go back to regular deodorant though as I am conscious and concerned
about anything I put onto my skin these days. After realizing that
"transdermal" hrt works, and realizing that something I put on my
skin can cause something to happen in my body I don't put anything
on my skin anymore that has chemicals or perfumes in it.
05/19 - Well, I'm getting behind here! The last week has been
extremely busy. Still feeling "well". The hormones must be working,
I got my first pimple in about a year! Darn those male hormones
*just joshin*or maybe not :o)
I am still feeling like the old me, which is wonderful ! Didn't
realize how much I missed me!! I am also feeling a little stronger,
don't know if this can be possible but, I feel as if my "framework"
is stronger, more solid. (could the progesterone be doing its magic
on those osteoblasts, already??). I don't know of any other
explanation. With all the joint pains, glitches, catches and aches
I've had over the last two years, I would notice, even when coming
up the stairs to my apartment my frame just felt weak...it is truly
feeling stronger, that probably sounds a little strange and its a
little hard to describe but I think you get the idea. No noticeable
negative side effects, today is two weeks. Still hoping and praying!
05/20 - Got to work and a few hours later, remembered that I didn't
put on my nhrt, I think, at least I could not remember actually
putting it on. It is terrible to remember something, then question
that memory, not sure if you're remembering correctly or not! First
time I've forgotten it, (if I actually did!) I had the estradiol
cream with me so used a little of that just in case. Still feeling
well, ummm, the memory still leaves a little to be desired though!~
Bad low backache today, actually way low, down near the coccyx.
Very irritable, depressed as the day wore on, worn out early evening,
all emotional resources depleted. What with money worries this week,
over work, and coping with daughter's and husband's issues, not
much left for feeling well towards the end of this week.
Full moon is coming too, think its going to be a bad one!
05/28 - Busy week again!
So far so good on transdermal nhr, I still have a little trouble
in the morning, remembering if I put it on or not! Maybe I need
to setup some small clue to myself, but *LOL* then will I remember
to do that? Seriously! It has been bad some days! I get up to for
work around 5:30, 6:00am, usually drink a cup of coffee before
taking my shower, after shower, would put on transdermal nhr after
showering. Then 15-20 minutes later, look at the tube and think
"Did I put that on or not!" *Whew* that is bad! I don't do that
every day, but, too often for my comfort. If I can't remember,
I usually will not put it on again but wait till later on in the
day and if I'm getting hot flashes, will then conclude that I must
have forgotten to put it on and apply it then.
Using the new nhrt consistently everyday, I have not had a problem
with hot flashes, thank goodness because summer is here in Florida
and its hot and humid already.
The increased perspiration I was noticing has diminished and I
haven't had any further problems with acne breakouts so hopefully
those two symptoms were just my body adjusting.
I am still experiencing a good sense of well being, feeling calmer,
less irritable and more like my old self again, this has stayed
consistent now for the time that I've been on the new nhrt so I
believe it is here to stay...Yeah!!!
I am still feeling stiff in the mornings when I get up, but not
quite as bad, it is lessening. Also the many and multiple joint
pains that have plagued me for the last year are so far, lessening.
I still have occasional low back and left hip pain but at least
I'm not waking up everyday with a different joint hurting, this is
also a big improvement.
My energy levels are still down somewhat and I still feel sleepy
throughout the day a lot, wake up tired many days. Even though I
have been using the cpap machine now for ten days, I do not notice
a big improvement in feeling less tired. I suspect some, if not all,
of this still has to do with getting my hormone levels up where
they should be and leveled out.
I am also still very negatively affected by stress and my
bodies response to stressors which I still have to many of despite
working very hard to decrease the stressful events in my life. If
I have a stressful situation happen, say for instance, I were to
get into an argument with my husband, or if I get upset about
something and say, I cry, shortly afterward, (1-2 hours) my body
will start to ache all over like I'm getting a bad flu. This will
generally stay with me then for the rest of the day, if its been
really bad, into the next day. I can almost imagine due to stress
response, my adrenals squirting out some negative chemicals and
them permeating the soft tissue of my body (this is the physical
response I can almost envision happening). Unfortunately with two
jobs, one of which has been extremely stressful almost everyday,
my husband and I still being separated, and dealing his ptsd and
with my daughter's recent increased depression, stress responses
have still been frequent and too numerous. Some days I wonder if I
will just "shut down", but I go on, and hope each day, and work to
resolve some of these issues.
I got my results of the saliva hormone testing back but don't
know about the levels and what they mean so I am waiting to hear
from the compounding pharmacist on that, will update when I know.
I am still hoping and praying !
Let your voice be heard!
© 1998 Jeannah McElroy. Copyright
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