Our dear, dear Bernie,
Even if you never have the strength to write to us, you will always be right
in the middle of every one of us and we will take care of you and love you
as much as we possible can in our own special way. You may add all of your
family to our list because they are in need of a love and caring and prayers
that this group seems so capable of giving. Always know that we are as
close as your computer whether you are able to answer or not and please do
not feel sorry if you just can't do it? You and yours will be in the midst
of our thoughts and prayers and please pass that on to them, would you? We
love you and care for you all..Jeanne
-------Original Message-------
From: Bernard Pelow
Date: 2/9/2009 10:38:13 AM
To: TMIC
Subject: [TMIC] hello and sorry
My Dear TM Friends and Family,
It has been a very long time since I have posted to the group; these
past months or almost two years now have been awful to say the least.
Rick, I am not sure what happened to your son, but I gather he has passed
on, so I send you and your family my sincere condolences for your loss. But
as was said by others, we may be 'strangers' in many ways, but we are also a
very large family and we feel each others pains and sorrows.
To Jude, my dear friend... I have caught a few excerpts of what has been
happening with you. And I hope you know you are in my prayers, as well as
Rick and all others. You have the spirit of a warrior to keep on going as
you have been.
As for me, some of you know I had a very difficult time in my recovery
from my last surgery in March of '08. To keep the facts short, what happened
was this: when the doctor went in to replace the pump, he found the doctor
who put in the previous pump had used a sort of 'mesh' bag to suture it in
place. Well my body apparently did not like this bag (it was the first time
it was used in me) and it attacked the bag and my body and ended up making a
ball of intertwined scar tissue the size of a grapefruit in my left lower
abdomen. He said it was a real mess, and the normal 2 hour surgery took
almost 9 hours to clean up most of the mess. I still have some scar tissue
and parts of the old catheter left in me, but he said if he had tried to
take it all, he would have had to nearly gut me. And it took over 4 months
just to get sort of back to my normal routine, I am still not back to what
would be normal function for me. I now also have new neurological problems,
they are not sure why, but it all started after this last surgery. It is
possible that some of the scar tissue followed the catheter into the spinal
column, there is no way to check for it with an MRI as I have the metal
infusion pump in me; the MRI would rip it out of me. I have new areas of
pain in my lower back, I am having spasticity and nerve misfiring in my arms
and neck now; they don't think it is TM, more likely MS as sometimes happens
with TM patients. So that is just a short burst about me.
As many of you know, my oldest daughter has been living with me now to
help take care of me, but since then she had a massive thyroid storm January
'07, had it surgically removed May of '07 and was diagnosed with
Hypothyroidism and Graves Disease. So now she has Hypoparathyroidism and
Hypocalcimia. She also started having Grand Mal seizures, they do not know
what triggered it, but they put her on Dilantin and they are under control
right now. Since then she has gotten progressively worse with wicked non
stop migraines and other neurological symptoms; they are searching for the
cause, but because we are on government health programs, it takes forever to
get appointments. The latest idea is that she might have something called
PTC or pseudo-tumor cerebri. It is not a tumor, but the brain acts like
there is a tumor and the spinal fluid levels increase causing great pressure
around the brain, thus the headaches and other symptoms. There is no cure,
just a stop gap surgery where they place a shunt at the point where the
brain and spinal cord meet. When the fluid reaches a certain pressure, the
shunt opens and releases excess fluid into the body where it is disposed of
through other body functions. She has applied for SS assistance and was
turned down (of course), we are trying to live on just my income, and she
hates feeling useless. She wants to get back to work and school so bad, but
she barely has enough energy to get through a day just around the house.
My youngest daughter has been treated for Endometriosis for about 8 years
now, has had numerous surgeries to remove scarring and lesions, but the pain
got no better. So they removed her right ovary last year in hopes that would
solve it, but as you can guess, it did nothing, and she still suffers from
severe pain and cramping, and all the other things associated with that
disease.
Thank God my ex wife - (kids mom) has had no serious repercussions since
her bout with breast cancer and a radical mastectomy, lung cancer and the
removal of most of her right lung. She just has to take it easy as she gets
short of breath really easy, but otherwise she seems to be doing relatively
well. So we have one thing to feel good about, and thank God she is blessed
with no more cancer right now.
Every one of us in my family, including my brother and his kids and my
sister have autoimmune disorders. I say there is a genetic link to these
diseases, but doctors say no. So either we are the unluckiest family in the
world, or there is a link, they just haven't searched hard enough for it.
So all in all, I do not get on the computer very often anymore. But that
does not mean I am not thinking of you, I check emails every few days; but
generally have no energy or am in intense pain to try to write everyone backI truly miss you and wish you all my best... Rick, Mary E., Jude, Gilly, Phranque, Bob, Cody, Dex, Cossy, Bob, Sarge, Todd, and I know I am forgetting a lot more of you.. and to all the TM family; my heartfelt thanks and prayers for all of you. I miss talking to y'all through our letters, and hopefully I will be able to get to the computer more often in the future. I do have to go now as I am really spasming and my pain is through the roof. Blessings and Peace to and for all of you... Namaste, Bernie
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