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 back.
I 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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tel;home:512-926-5475
note:Thomas Jefferson said it best,------"Those that trade freedom for security deserve neither freedom nor security"............
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