Recovery Journal 6

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The struggle continues

11/09/03

Not much has changed since I wrote last, no ďBIGĒ health events except for having
cat scratch disease back in mid July! not fun! I was very sick and had to be on IV
antibiotics for a couple days in the hospital.

One migraine last weekend, started sat. night and kept
it until Sun. afternoon, I think it was allergy related.

Still hurting badly everyday, sometimes I think Iím getting worse but not sure.
For so long I thought if I could just get my hormones straight since this came on
after removal of my ovaries, that it would improve/subside/disappear,
but that has not happened, then I thought if I got out of the physical job I had
that would help but Iím not better at a desk job than I was when I was on my feet 8-12
hrs, then I thought if I could keep my stress low that would make a difference
but it hasnít, nothing makes much of a difference, there are things that make it
worse! the weather (humidity, fronts coming through, etc.), stress (emotional,
physical, nutritional, hormonal), but there is nothing thus far that really
makes it much better and over the last 5 yrs, Iíve tried it all, the only thing
I havenít tried is regular exercise but when it hurts to sleep and to move, I donít
have the stamina/desire or energy to engage in exercise but Iím going to
try very soon. My goal is to get the vcr in the living room so I can do some
light aerobics, our place is so small there is not much
room to do any exercise but Iím going to give it a try.

I grapple often with the feelings of ďguiltĒ over taking a narcotic pain reliever
on an almost daily basis, after not taking anything like that through a life time
of pain with endo, previous back problems, itís hard to accept that itís ok to take
now, you hear so much about how itís bad/abused, etc, but itís the only relief
I get and it never takes the pain away totally but makes it bearable and helps me
get through the day and what I have to live with. People take medication on a
daily basis for a host of other problems/diseases, why
is it not ok for me to take pain medication for daily pain? to ease suffering
and to be able to make a living when I could otherwise have to be on disability?

It comes from years of doctors making you feel like you are a drug seeker if you
asked for anything for pain and I understand how that evolved but it doesnít make
it any easier, I know doctors have been and are under scrutiny for prescribing narcotics
but there has to be a point where itís considered humane and caring to prescribe
them for people who really need it and for whom it helps, I thank God that
my doctor is one such doctor who realizes this.

And what do I live with everyday....it makes me tired to even think about it, I know
there are many people with much worse problems, and I also know many people would
not be able to keep going with the pain I have everyday.

It hurts to sit, stand, lie down, sleep, wake up and move. I feel like I have the flu,
achy all over, I feel like Iíve done 4 hrs of aerobics, my muscles ache and
burn, I could believe it was from being overweight if my neck, shoulders, fingers, wrists
and muscles and tissue all throughout my body didnít hurt.

Itís pretty much constant, but the pain levels increase and decrease throughout
the course of a day. Every morning I wake up I feel like Iíve been run over by a
truck and my muscles ache and burn, pain travels one day or for a few days my wrist
will hurt then quit as soon as it started, this can last any where from one day to
months, Iíve had portions of my body hurt like a hip, a knee an elbow, a shoulder,
hurt for months then stop and that particular pain just disappear.

No, nothing much has changed.

I'm still using the sublingual hormones from Bellevue Pharmacy and despite
the fibromyalgia, they work at keeping me feeling well in all other ways. If you have
health problems post hysterectomy or ovarian removal, hormone "supplementation" is not
always the "cure all", nothing works like our own ovarian hormones, good,
effective hormone supplementation as is found with bioidentical hormones may relieve
all symptoms, but in some women, like me, it only relieves some of them. Without
them though, I surely do not feel like myself and have
many more widespread negative symptoms and health problems.

05/01/05

Fibro

I stopped keeping track a year ago!
Hard to believe but itís the same thing nothing I do seems to help
getting the hormones right
being more active (walking the beach 2-5 times a week
depending on how tired I am after work)
somewhat reduced stress, while I did leave my stressful unhealthy marriage,
my stress at work is worse than it was then so I guess that was a wash. I work 60
hrs a week now, and am on call after hours and on weekends with the phones
except one weekend a month, and the stress level with increased responsibility since
this time last year is pretty much through the roof pain levels remain consistent
and daily and on the especially stressful days which is at least twice a week (Mondays
and Tuesdays have now both become extremely high stress 12 hr days which
sometimes leave me with a herpes breakout :o(

Guess thatís what I have to work on next, a lower stress job other than that,
my health has been pretty good, only got sick once this season which lasted
about 10 days with a terrible head cold complete with body aches and all.

You still get tired of feeling beat up every day (literally) and itís hard to
get up out of bed when you feel worse than when you went to bed

10/14/05

Everything's pretty much status quo

Still with fibro :o(
getting ready to go see the Doc in 2 weeks for 6 month medication renewal
going to ask her about a sleep med this time. Many people with fibro have read
my journal and said they are helped my sleep medications, it's one of the
few things I haven't tried and I don't like to leave any stone unturned!

Still using the sublingual tablet's, bioidentical hormone supplementation from
Bellevue Pharmacy and am still very satisfied with the results and symptom control.

That's it for now!

03/19/06

Things remain status quo

Still using bioidentical hormones, and still feel very well in using them, in
relation to ovarian hormone loss health effects.

Fibromyalgia still sucks! I am still in pain everyday. I wake up in pain,
go to be in pain, wake up in more pain than I was when I go to bed.

I still use the same medication for the pain. Although over the last year,
we tried adding a muscle relaxer, they didn't help much at all.

Tried adding something for sleep, can't see that it helps much either but then
I don't use it on a regular basis either so that could be part of it.

10/29/06

These are a few of the things I have written about in the last few months

This becomes more about, "Life with Fibromyalgia" at this point.

From August 8th, 2006-
It hurt to brush my hair today, to grasp anything each finger hurts. I realized today though,
I am not the type to go "Oh, I'm really hurting today", and slow down or whine, or even tell anyone.
I "powered" through brushing my hair then go oh, that hurt and go on to the next thing.

Probably from the many years I lived with the pain of endometriosis, and was raising my daughter
on my own. I had to go to work anyway, no matter how much pain I was in, I had to "power through",
ignore the pain and cope the best I could, back then (near 15 years ago and for 6 years until my
hysterectomy), that meant taking 6-10 200mg ibuprofen at a time,
to take the edge off enough that I could go to work.

This summer has really hurt me. All the fronts, humidity, pain worse on a daily basis,
not excruciating, just up a notch or two so that daily levels are a 5-7 on a consistent basis.
As long as I don't push myself to far, or let myself get too deficient hormonally (taking my hormone
supplementation as prescribed), nutritionally (skipping meals or not eating well), and physically
(working too long, not stretching enough, getting too little sleep), then I stay around 5-7,
WITH pain medication and muscle relaxers, I stay around 3-7, fluctuating within all those factors.
I'm finding many days I could use to take more pain medication, some days I do but often do not
as it will cause them to run out before I can get them refilled. Addicted to pain medication????
I submit that I am addicted to pain relief!

I have been MUCH more intolerable of the heat this year. Can't stand it. and sometimes I feel
my muscles start to cramp up when I go to do something (like move or grasp something),
that is a bit scary. Gee, it only hurts when I move!

Life with fibromyalgia definitely out does the pain from anything I ever had (back injury, endo, etc.)
because you never know how you're going to feel from day to day, sometimes even every few hours.
It's unpredictable, unquantifiable. It makes you tired.

Today it hurts to pick up and lift my coffee cup, I ignore it as much as I can though.

January 24, 2010

Wow! yes, it's really been 3 & 1/2 years since I've written...and...
things have changed while so much remains the same.

I've gotten remarried and am in a healthy, mature, loving, relationship for the first
time in my adult life, I guess that is a big change♥

I'm a Grandma now to beautiful, sweet, most precious Emma, born on my deceased Father's
birthday, May 21, she'll be 3 this May. I get to see her almost everyday, along with my
precious Daughter, I am so very lucky in that way!!

I'm not working in the physically stressful job that I was a few years ago. I've gone back to
being the staffing coordinator in a home health agency. Mentally and emotionally stressful
often. I'm not sure which is the worse of the two, both affect my pain levels a great deal.

I still take the same bioidentical hormone therapy and have been on the same dose, same delivery
form and with the same awesome Compounding Pharmacy (Bellevue Pharmacy) since 2000. My dose
changed some over the course of the last ten years on bhrt but has remained the same 2002
(Biestrogen 3.75mg, sublingual tablet 2x daily, Testosterone 0.625, sublingual tablet 2x daily,
DHEA 25 mg after breakfast. I don't use prescription strength progesterone any longer, it
seemed my levels remained too high no matter what I did. I do use Emerita's ProGest though.
I feel good for a woman with no ovaries in that regard.

Still living with fibromyalgia, that hasn't changed much, despite less stress in my life in
general. Well, not sure that's entirely true, we've had a good deal of family stress these
last two years so, as always, if it's not one thing it's another.

I still am in some degree of pain every single day of my existence here on this earth. I still
push myself and end up in more pain that I might otherwise be many days. I still get sudden
pain in a part of my body with no reason or event to have caused it. The pain still travels
around with no logic or reason. This past year I have had excruciating pain in my right shoulder,
having done nothing to get it there. It lasted several months, then as is fibro's way with me, just
disappeared. Likewise with tennis elbow, which I had in 1998 when fibro first made itself known
in my body and traveled around through every joint and every part of my body with no injury
or event to have caused it. Twelve years living with fibro now,
some things have changed and some remain the same.

© Jeannah McElroy. 2003


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