Stressed, beaten, down-trodden, shattered; and how
can a human being survive in such a horrible state that
this mitochondrial which has been escalating and spiraling
downhill so fast whereas my Physican to Surgeons are now
moving quickly to find that Level 4/5 Neuro-Opthamalogist
(spelling? and many apologies for my exceeding large font
for superimposed that should self-sufficient how degrading
my health has been declining; already profoundly deaf - now
battling to see).

Was "thrown out" from PAWS (YES - that is Paws With A
Cause Organization aka "pawswithacause.org" all because
I had no computer for months; yet via the Relay the last
conversation was just before the Home Interview was that
she would call me after she returns back in 10 days; whereas
I've phoned her repetitiously likewise my elderly mother as
well - all was futile and in vain until FINALLY my elderly mother
got a hold of her ... that was ... only after *edit* DUMPED
ME and turned me over to the DIRECTOR and lied flat out with
her teeth ... I asked God to forgive her for what she's done;
but yet, she will have to answer to God for this as well as the
Director herself - for I was BASHED DOWN without any reasonable
field of doubt. Leaving my Physican to Surgeons scratching their
heads whereas they once sponsored them and/or had them on
their wills; now removed them off to someone more reputatible.
For I had 2 Guide Dogs (old terminology) who had passed away;
finally to the degree where that which I need the most I cannot
even attain. They were more concerned about the dog than they
are about a human being; so yes, the word has been going around
very quickly to individuals - it sent a shock-wave.)

So what does this leave to an individual who is going blind, profoundly
deaf, has unstable gait who will be obtaining a mobile scooter; I feel
like the scriptures written .... (excerpts):

....meek as a lamb that's led to the slaughterhouse; dumb as a sheep,
before its shearer..... Spoke not a word .... its blood ran down upon
the ground like pouring rain ....

So as it was with JESUS; He Himself did warn of His Followers pertaining
to the last days ..... insomuch in today's language He would have said it
this fashion; "How much more would they treat you being followers of me?"
(That would be the true literal translation betwixt the Amplified/Open/ and
KJV intermingled with the Greek inscription.

Moreover; one thing about Epilepsy and Mature Women (already in
Menopause) - 3 things can happen to them:
Epilepsy can:
1) Enter gradually or almost "instantly" into remission
2) Remain the same
3) Turn for the worse

In my end; this one is a tough call to be frank and honest; with my
Doctors (all being Professors / Associate Professors - still active and
teaching Interns) battling with the mitochondrial (Leigh's - which is
pronounced "Lee's" Syndrome but also known as Leigh's Disease but
it isn't a Disease; however the major dilemma here ---> more so
with females than with men as it is denominating factor here; is that
the NINHS is finding more mutants and variants. But this is not helping
here for there are multiples of types and strains which aligns to "what
you've got" ---- but then there are also two other mitochondrials as
one Doc says it best "sitting pretty there; that could also be the issue"
and the worse case scenerio is no one would know until the day God
calls me home for they would need my brain in order to find out as
I sum it up the best "Who's on first and what's on second". They are
all honest and upfront enought to confess that they could be wrong al-
together ... it could be something entirely different; they just do not
know what they are dealing with .. but one thing they know is ... I AM
THEIR PATIENT.


It's a very hard time for me right now; my own sister and brother in law
won't even associate with me or look at me. To them, right now, I am
some sort of a parasite; as for my son who has to battle with his wife
who is teaching their children the wrong messages (garbage if you please);
for he, himself knows he's a carrier but at least he got treated young -
as everyone caught the pattern very quickly; like I said many times
for years "the things I qualified and needed the most, I cannot attain;
yet, the others can at the snap of their own fingers; this is beyond my
concept of comprehension and understanding." Same way it went with
my own son; they immediately treated him; BUT <---- there's that "B"
word there ----> there are "no guarantees"; nothing left but hopes and
promises. While all eyes are on my youngest grandchild (my son's off-
spring as he has another child that isn't his but wants to adopt which is
his wife's child ... yet; that child believes my son is his father, in addition
that I am his grandmother, his great grandmother - for the pictures he has
seen and looks at onself then own little sibling; he really believes but the
DCF fell apart in the adoption process) the observation of her is scary
enough; but yet, the truth is still there - such thing I have made mention
of while nearly all my Doctors are Jewish and one Messanic Jew (Christian/
Jewish) and one Christian; yet, they know who I am; known me for decades.

My point? They all agree with me on this - it's based on the Old Testament
(aka Jewish Law) - but it also has a double reference / double meaning;
the Law of 4 Generations - the sin of the father/mother; triggers off 4
generations of sufferings before the end. So herein lies this one thing, is my
son the "end" of the 4th Generation? But in the Medical Field; such DNA,
Genetic and Mitochondrial are also known to "skip a generation".

At this point, I won't even smile; I shy away from cameras to people as
much as possible; for SEIZURES HAVE BEEN SO GREAT that they have
literally shattered nearly all my teeth with its own crushing epileptic force!
It is exceeding difficult to eat when one only has 2 front teeth that are
severely damaged; all I can eat is baby food, soft food, and the longing to
eat "REAL FOOD" is so hard when you have commercials blaring FOOD,
FOOD, FOOD, and more FOOD leaving your stomach churning; and to
answer your question ....

Yes, I cry; it's been like this for a prolonged period of time; until my meds
all began to rock the boat (that part isn't understood, but it is also understood
that my vision also was declining rapidly at the same given time).

Trial and Error with new meds in adjunctive with what I had to at least
stable "the boat" - FAILED - until I had went into a deep though and came
up with a solution; brought it forth to the Doctors-Surgeons which left
them to ponder. They knew my historical records after hearing what I
remarked about canning new meds but keeping what I have and just doing
just this, only this; see what happens. That was an excellent plan and idea
there - considering the fact; I really do not have any wide array of fields or
options or avenues to try; for once again I had been slammed dunked with
SJS (Steven Johnson's Syndrome, which can be deadly, but this too was
a deadly, life threatening situation - *DING* - Round 2 with SJS again; and
I bear scars from first Lammy (Lamtical) and not that long ago, Vimpat,
which only lasted me barely 2 weeks - I do not know which was worse:

Vampire-bat (Vimpat) or Felbatol (Fell From Hell) <---- all my Docs loves
that as I sum that Felbatol with excellency; for I was on "Fell From Hell"
decades ago; it's worse than any SyFy Movies out there all combined
together and Stephen King himself couldn't write a book on it (I stated
that so you could quote me on this); insomuch everyone agreed.

While many have already known; I've been through Menopause, yet, there
is much more to it, having had surgery; very high risk for cancer - head to
toe ... I AM HUMAN - I will admit that; for I do get annoyed of having to go
to the Radiologist/Oncologist and back again ... it grows on you; it's like a
"never-ending roller coaster ride that just won't stop and let you off".

Sadly, I am having more bad days, than 50/50 and good days - this doesn't
scare me; but it does frustrate me, being homebound, in bed or asleep, not
a surgical candidate, too high of a risk for cardiac surgery - but yet I am stlll
closely monitored. Flatly refuse to live or reside in an "Assisted Living Facility"
or "Hospitlization". If God calls me home, I will go peacefully in my own home.
My family, elderly mother, son (sadly, yes, I had to revise the will to protect
my son due to his wife - long story here; along with my grandchildren; for
HE would be the Executor even if DCF took him elsewhere) the good news is;
per the Attorney is the establishment that my own son would have and the
way the will is written would all be already filed in court and sealed. With that
being stated, the chances would be very high the State would not gain custody
of that child .... HE WOULD!

It is really a shame really, when you look at it; a mother who looses custody
of her own children, only regains one by the "skin of one's teeth but almost
loses that child" ... really sad if my son and I had not vouched in at that given
time in defense of the sake of the child.

The Lord said "Suffer little children and forbid them not...."


I must be one bad Grandma here ....

I SPOIL THEM ROTTEN TO THE CORE WHERE THEY ARE SO BRIGHT THAT
THE SCHOOLS HAVE THE ELDER CHILD IN THE GIFTED PROGRAM AND THE
YOUNGEST IS SO INTELLIGENT WHEREAS MY OWN ELDERLY MOM TOLD ME
THIS ...

"(eliminating child's name due to being a minors); both of them take up after
you: as I was to you, so you are to them. As I was you at that child's age; so
are you to that child. Just as you were to your son."



PS: Why are mom's always right?



As the old beloved favorite song lyrics goes:

Until then, my heart will I go on singing
Until then, I will carry on
Until the day my eyes behold that city
Until the day God calls me home

(Blackwood Brothers - my fav LP Album Until Then)

We do suffer the frailty of all of the human experience, and to a person we who share here do care. Just writin to let you know you have one who cares, in fact many here thus.

Prayin

Southie,

You have gone thru so much; yet have gained wisdom beyond measure.

You don't need any apologies regarding the large print. Made reading so much

easier. Just want you to know we care and are here for you.

You will be in my prayers starting this moment.


You are a brave woman with courage only God's love and guidance can sustain.

Mark, as well as myself, along with most of us here, are bound together by the pain

we have in common. Our faith has been our "Rock".

Praying,

Gerry

Welcome to this forum where you will find both compassion and friends. You will never be alone here. When you hurt the worst, this is the place to be. I run back here when my own days are painful and confusing. We are all Gods children and fragile. We need each other. Prayer is a regular gift we give to each other. We are contacted by other members, just to make sure we are OK. I will pray for you at Church this morning. I am so sorry for all the medical conditions you have. The human condition can be so very sad at times. Just know that you will be cared about. members will look up your conditions and try to offer support. Just know that you will be cared about. The sancutary for spiritual support is where I go, when life hits me the hardest. Be at ease here, I care. Ginnie

Southie,

Long time no see you around. We sure have missed you.