I'm back
Folks and it has been awhile. I guess you all have been wondering if
I abandoned everyone and my Blog. I didn't intend on staying away so
long but I've had a very hard go of it since my diagnosis two years
ago of Addison's Disease.
I couldn't
tell you the whole story of what's happened because it would take to
long and I'm not able to be on here long at a time. But I'm coping
and learning how to live with my new norm .
Not many
people know what this disease is, not even the doctors know much
about it. The Endocrinoligists get a couple of patients in their
whole career and that's about it. They only know how to hand out the
steroids and tell you that you have to take them the rest of your
life. They fail to tell you that most of these steroids only last 4
to 6 hours in the body and you're on your own the rest of the day.
Steroids are our life saving meds and we have to be on alert and
listen to our body or else. I've learned to split my daily dosage up
into 5 doses daily. These steroids replace what the adrenals fail to
produce of the life saving hormone called cortisol. It's our stress
hormone among other things. If we get any type of stress on our
bodies such as sickness, mental, emotional, etc. we have to updose
our daily dosage to get by or go into an adrenal crisis which means
if we can't get enough steroids in our bodies to buy us a little time
to get to the ER our organs will start shutting down and we are a
goner.
I've had a
few close calls in the last couple of years but managed to get enough
steroids in me till I could get to the ER. We live in a small area
and have two hospitals but I only go to the same one every time. One
would think as many times as I've been and told them my issues they
would have it all in the computer and I wouldn't have to take my
paper work in and my card to show them I need immediate medical
attention. I'm a member of the NADF (National Adrenal Disease
Foundation) and they sent me a lot of paperwork to take with me each
time but the Doctors still have to Goggle it. But that's enough about
me for now.
We've also
had other sickness in my family as well. We almost lost my oldest
brother back the last of May and into June. He was diagnosed last
year with colon cancer and they were able to take it out and he was
put in with the Cancer Center Doctors. This past spring his cancer
numbers came back very high and he was sent for MRI'S and Scans. They
found it in his liver and he went through three of the strongest
Chemo's the human body can with stand trying to shrink it enough for
the cancer surgeon to go in and take part of his liver out.
They did the
cancer surgery on May 28th and they found it not only in
his liver but in his gallbladder and lymp nodes too. They said they
got it all but that night after the surgery he had a heart attack and
they had to work fast to save him. They kept him on a ventilator for
almost 7 days till he could get a little stronger and they went in
and did Heart Bypass on him. They had to replace the main valve to
his heart also it was damaged so bad. He went through all of the
cancer treatments and surgery with no knowledge from him or the
doctors knowing anything about how bad his heart really was. The
heart doctor told him he wouldn't have made it much longer even if he
was at home without a major heart attack. Then on top of everything
else he developed an infection where they had to replace his main
valve to his heart and had to be on IV Antibiotics for six weeks. The
nurses taught his wife how to administer the antibiotics into his
port. She said, she and God did it all. We just never know what we
can do when we're up against a wall.
The nurses
have been coming into his home and drawing blood every week and
sending it to be checked out. But Praise God he is now on the mend.
The nurses are still coming in but he's been released from the Rehab.
I wanted to
tell you all this to show how God really does work when we need him
the most and my brother says it was not his time to go yet. Amen to
that and we all give God the Glory and Praise for what he has done
and still doing in our lives.
Let's just
say I had to take a lot of my life saving meds to get by
I'm sorry
for the long post but wanted to let you all know I'll try to visit
each one when and as I'm able and I have missed everyone so much and
all of your posts. Thank you all so much for not giving up on me. May
God Bless you all !!
~Susie~
