24 Hours in My Day
I am writing this in the summer of 2009, as a way to vent, to count my
blessings,
and to perhaps be of some help to others that may encounter any of the health
problems that I have and the suggested medications and ways to cope.
I have Fibromyalgia, insomnia, dry eyes, IBS
(irritable bowel syndrome), upper repertory problems, eternal menopause, and am
allergic to dust and perfumes...and my Frozen Shoulders, and a bad back/spine.
The symptoms I will be writing about all come from one or another of these
syndromes.
WHAT IS, HOW DOES FM AFFECT US? A GOOD ARTICLE (SCANNED IN JPGS)
http://www.lynescreations.com/FM%201.jpg
http://www.lynescreations.com/FM%202.jpg
http://www.lynescreations.com/FM%203.jpg
IT HAS BEEN FOUND THAT THE CLUSTER OF NERVES
AT THE TOP OF THE SPINE DO NOT HAVE THE NORMAL SIGNALS
AND CAN SEND THE WRONG ONES TO NERVES, CAUSING THE PAIN, IF I HAVE THAT RIGHT.
IT IS FOR SURE AN ABNORMALITY
IN THE FUNCTION OF THE NERVES AND SIGNALS. After menopause the hormones
that regulate and help keep things in check are gone and FM sufferers like me
can find themselves with much worse symptoms.
To help the "raw nerves" of FM, often a quiet peaceful environment, free from
the noise and chaos life and families can have, will really help!
I get up in "my" morning - that being any time
round the clock when I have been able to get 8 hours rest/sleep....and struggle
to sit up, feeling very stiff all over, and very groggy. I take my foam ear
plugs out...those really help with the over-sensitivity to noise, that is also a
part of FM. Being in bed that long is helpful for my slow circulation's reaction
(to sitting long at the computer or in front of the TV) of having my lower legs
swell with fluid retention. Never had this problem before I started taking both
a muscle relaxant and a pain killer. Both make it very hard to be awake - which
is one good thing for having insomnia! SO! GOOD: a cure for insomnia, most of
the "FM" pain dulled down, and muscles looser than I ever had before! BAD:
always sleepy and sluggish, dry eyes from the dehydration side effect of a pain
killer. COPING: I get up and pull myself to the bathroom and brush my teeth with
an electric toothbrush! Set on "High" it tends to wake one up, all the vibration
and buzzing in one's mouth! :)
NOTE: a word about FM and the "brain fog"... it's a great idea to either keep a
full journal and/or at least a chart to note down what time you took what
meds... :) I find I really rely on this... plus a little journaling of my
feelings, chores I need to do...sort of talking to myself helps me live each
day.... and that is another so important thing... I LIVE IN THE MOMENT!! So I do
not think about anything but whatever health issue or symptom is in my face! :)
Oh but before I brush my teeth I take two long hard deep pulls on a powdered
cortisone inhaler to keep my "dinosaur sounding name" bronchial problems from
acting up! I have to rinse well, so I rinse and then brush my teeth! :)
GOOD: it does keep my bronchial (upper part of my much scared lungs) from
BLEEDING when I cough...that was terrifying before I knew it was 'normal' for
me... BAD: catching a cold or flu just makes me HURT more in any one of these
areas! So I act like MONK... and am germaphobic! But it pays off.... !
I shower every other day...why? Because it HURTS... most of the time, just
running my hands with a bar of soap, or even a wash cloth over my body gently,
will actually hurt as though my body is one big bruise. The medications help but
one can not get rid of all the pains...it would just take too much pain
medication to do that. Learning to live with it is the only way. I hate it! But
I cope and in that, I become proud of myself! I also avoid soaps with perfume in
them... I can't stand heavy smells...
So by now my body is loosing up and I take or have taken the two meds that allow
me to function with all the household chores of taking care of me, my kitty cat
and my home... and I go downstairs to eat one of the three choices of meals that
my IBS gut will tolerate... Basically I have to ask myself, do you want "raw"
Tofu on watered down syrup soaked bread, chicken breast meat with bread, or
chicken mixed in my non fiber noodles with lots of salt? And water to drink.
PERIOD... nothing else... GOOD: well, I am still alive with the help of this
food and the powerful natural SOLARAY vitamins and minerals I take. It does
taste good - the sweet of my "tofu pie" plate of bread... or the salty chicken
breast meat. BAD: total frustration with the foods I CAN'T HAVE anymore ever. :(
I avoid TV commercials, and keep my friends from talking about foods as much as
possible. It's hard for a doctor to believe MY IBS does not tolerate ANY fiber!
GOOD: I have, with years of experimenting, not only FOUND FOOD TO SURVIVE but I
have learned to bake simple non fiber, non dairy, non oil bread! (that has NO
preservatives!! I freeze the second loaf, I do eat about one small loaf a day,
having had to cut off all the crust) I have taught myself how to tender
steam the most tender cuts of chicken breast meat, and I found it helps my
menopause to eat Tofu - a natural plant estrogen, to say nothing of Tofu (soy
plant) high protein, high calcium content! For being raised with NO cooking
skills at all, and a black thumb in the kitchen, I can cook/bake what I need! :)
After breakfast I have to look at what needs doing... bake two loaves of bread
(see bottom for dairy free, fat free white bread machine bread!)
at once in my two bread machines? Steam cook fresh chicken (to cut up and
package in meal size portions to freeze? Cut up and put in water some more fresh
Tofu? Boil up the noodles to keep cold in the fridge? (those noodles are the looonng kind that sometimes say they are for chow mien, they are quick cooking
"soba" noodles.) Those tasks take a lot of time, the bread every other
day, noodles once every 3-4 days, and Tofu as needed...(I get 4 meals of Tofu
out of one "firm" brick). The yeast must be set out to warm up (and come
alive... eeeeuuu! shudder!! ;) for at least 4 hours, so I may do other chores or
allow myself to be on line... or I watch TV... Sometimes it's pay the bills and
of course every day it's CLEAN THE CAT BOXES... one kitty makes a nice mess, but
what would I do without him and his antics?! Speaking of the cat box... it was
getting down on my knees that I first became aware that my now fluid filled body
(since I started drinking more water!!) was swelling my legs and feet! Suddenly
my bent toes, and my knees felt tight, hurt and I thought: what is going on!? I
also learned then that I MUST have 8 hours prone to minimize it, but now I also
wear a little battery operated pressure massage cuff on each calf when I go to
sit at the computer for any length of time... These "REVITALEG" (found at
drugstore.com) massager cuffs are expensive, but how worth it to keep the fluid
from building up!! I use them on the lowest setting, over top of a knee sock. -
Another GOOD thing I figured out for myself, and implemented! OH how I love the
internet! I can find anything there! :)
I watch TV programs on DVD, movies... these are my "books" as I can't hold a
book to read it, anymore, because of my bad shoulders. Oh! A GOOD for the muscle
relaxant! I have been able to get back more range of motion in my shoulders from
just doing all the tasks to keep me going! I HAVE to reach to put dishes away,
reach and lift things of some weight... and after a very long time, very subtly,
I realized this routine exercise was loosening my frozen shoulders quite a bit!
With FM - frozen shoulders is common and not really cure-able as it is part of
the muscle and joint aspects of Fibromyalgia. One thing that most therapists do
not realize is FULL therapy for frozen shoulders involving FM is BAD, and can
actually cause the joint to freeze back up! I had to learn the hard way and STOP
the physical therapy after the initial basics and just bring those exercises
home to do myself, not pushing past my limits as harshly as the therapist would!
Toward evening my eyes (actually the tear GLAND, not the tear duct) stops working... it's then that I grab a tube of Alcon's (over the counter) dry eye ointment (SYSTANE - LUBRICANT EYE OINTMENT) and put a little in each eye (good thing I do not wear eye make up, it would be a mess!) I add a drop of sterile (TEARS NATURAL EYE LUBRICANT) tears to moisten the (basically Vaseline) ointment, blink a lot and feel better...I have to apply the ointment again before sleep. I do have to keep using the tear vile stuff off and on, and all night long. Having one's upper, inner eyelid STICK to one's eyeball is NOT FUN!! It's horrible!! I have to pry the lid up and drop the drops in, and sooth them... Expensive and all but at least the PAIN and scratchy eyes I was getting is gone, and my vision is restored. Before I found the right remedies, my eyes got SO SORE and felt as though there were tiny rocks in them, and my vision started to really blur! Scared the daylights out of me! I do know there is a medication (drops) that will stimulate tear production, and will ask my doctor for it, if I have to.
Now the trick is, after my last meds and a
meal NOT TO FALL ASLEEP sitting in front of the TV (where I always eat, so as
not to really think too much about the food I eat) and have my head DROP down on
my chest, pulling my neck and back muscles all to heck! This one I have not yet
solved... it sneaks up on me, this falling asleep. :( Then I am so
groggy I sometimes don't THINK to get up and go to bed... I do have to use some
Nasonex nose spray - the one thing the head of the respiratory specialists
doctors at Scripps said would help keep congestion down, coughing away - all to
keep my lungs safe.
So, all medicated and ointment-ed up, I try to go to bed.... I can't go to bed if I have an FM attack where I start to hurt all
over, deep in my muscles...somehow laying down makes it worse? Go figure... and
it's different for everyone! So some can "rest the attack away"...
And there is another thing I won't go into, in detail but it's the "bathroom problems"... IBS is not pleasant and has many problems just being able to "go" even semi normally... the doctor who diagnosed me with all those ICKY "look see" tests... said two things... your IBS is the reason for your "rabbit pellets" type "poo" (my word) and told me in regards to food choices: "if it hurts, don't eat it".... which went from just no salads and raw vegetables to no fruit, to what it is today. SIGH. Doctors kept saying USE FIBER PILLS OR DRINKS...and that HURT ME SOOO MUCH! Sigh... not good. The fiber I get in the tender chicken and low fiber bread I make, and the Tofu (all say >1 gram fiber on the label) is all I can handle. The main thing is try what a doctor will suggest but do what works for you! You know your body better than anyone, and a good doctor will recognize and respect this.
And that is pretty much it... but for FUN, besides my DVD escapism, I go to Second Life on the internet! I have found so many friends there, so much adventure and the ability to do all the things I miss in "real life" and MUCH MORE!!! It is my salvation, my sanity savior!
A friend recently asked me, Do you go out in
the sunshine? No. It's not good for my pale white skin, especially with the
medications I take... and truth? I am not really motivated. I am on my own and
driving my car HURTS as I have to turn my head and move the way my body does not
like. (I lost a lot of range of motion in my neck too). So I live in my "home
made bubble" and do the very best I can. The other reason is my low immune
system, so I avoid going out without a germ mask... NOT FUN to wear, fogs up the
glasses... BUT I had YEARS of good times to pull the memories from... before
menopause hit and all the symptoms in all areas went over the top, off the
scale. Some have found relief with hormone replacement therapy, but not only is
that dangerous, but it is only putting off the inevitable, as menopause WILL hit
anyway... and personally I have a bad reaction to any of that stuff. (tried
every one out there!!).
It would seem to some, that my life is very truncated...but I make the most of
it, and talking with VOICE on Second Life, going dancing to any kind of music
one would want and FLYING... horse back riding and sooo many other wonderful
things in this very realistic animated world with people from all over the world
is the BEST!! It's amazing, stunning, thrilling and so utterly rewarding.... to
have a life that makes up for the lack in my "real life"... I am so grateful to
be alive today! There was a time, for a long time, I did not want to live,
it was so hard to accept and deal with my life alone and dealing with so much.
-------------------------------------------------
Fat Free, Dairy Free White Bread Machine Bread.
Want to bake bread in a bread machine that
is fat free, dairy free, oil free, preservative free and low fiber? I could not
find a recipe anywhere for this so after months of trial and error, I made my
own recipe! This is for using specifically in a Cuisenart Convection Bread
Machine. I cannot speak for results in other bread machines. Also this is baked
at sea level- something that DOES matter in bread machine bread making!
I bake the long way, NOT using a "fast rise" or fast rise yeast!!
Needed: Gold Medal BETTER FOR BREAD flour!! (made for bread machines!)
Regular yeast for bread machines, I use either Red Star or Flashmen's, Active
Dry yeast in a jar.
Sugar, Salt and water.
YEAST: 2 tsp. plus a "tich" - a tiny bit more, about 1/8 - ish tsp more.
Set yeast (kept in the refrigerator) OUT TO
WARM for at least 3 hours, 4 is better!
Get out 3 measuring cups, two "2 cup" and one 1 cup to be time effective.
FLOUR: 3 cups, plus 4 tbs
WATER: 1 1/4 cup MINUS 2 tbs and 1 tsp. (this will vary with altitude and
weather)
what you want is the mixture to be as dry as possible without throwing little
balls off the main ball, during kneading time.
Pour water in the bread pan, add:
SALT: 1/2 and 1/4 tsp
swirl around mixing salt into water. Pour the water into a measuring cup and
heat 21 seconds in a mid size microwave. My water is
bottled water, set against the fridge over night to warm to a bit more than room
temperature and then heat slightly. Again, temp of
water can not be too cold or hot for a bread machine. It takes experimenting for
the bread to rise nicely. Bread with no oils is more
difficult to get to rise!
SUGAR: set out to have handy: 2 tbs plus a "tich" - probably a fourth tsp more.
After warmed water is put back in the bread machine pan, pour the flour on top
and smooth out flat.
Pour the sugar in the middle and spoon out a hollow,
pour the room temp yeast into this hollow.
SET PAN SECURELY INTO BREAD MACHINE.
If you use the Cuisenart machine I do, I hit both buttons two times for light
crust and for a 1 /12 lb loaf size and hit start.
After the last big knead, I do take the paddle out by getting the dough out FAST
and take paddle out, put any dough
on the sides of the pan back, form into a BALL, place back in and put in machine
and hit Start again.
Good luck! It takes patience and experimenting to get it just right. The crust
will be a bit rough for this type of oil/fat free
bread. I normally cut off the bottom and sides as I slice up the bread loaf. It
will dry out fast too, so has to be eaten within
two days. This bread is very bland and gentle for IBS stomachs. :)
--------------------------------------------
