June 14, 2013 How the Disease affects
my life
Posted June 14th, 2013 by Mark
Ghiassi
Many people have now asked, HOW DOES
CUSHING'S AFFECT YOU?
I am not a blogger. I am a private
person. Many of my friends did not know I had brain surgery and how the disease
affected our lives. Since I have been sick, when I go out in public I do not
look “sick”. I have gained 50 pounds due to the disease. I did not
complain after surgery and did not tell when I was in pain because I always
wanted to enjoy myself when I went out and saw friends or family.
The disease is not just about
surgery, post surgery care is crucial. A recovery varies depending on damage to
your body from the disease. Remission is 7 years. Cost of medication can be the
same cost of cancer medication. Cushing’s can cause and affect:
osteoporosis, muscle weakness, bone and joint pain, psychosis, obesity,
fatigue, diabetes, cardio myopathy, heart attacks, potential organ damage, food
and medicine sensitvities, insomnia, and metabolisim of fats, carbs, proteins. This list is not all inclusive.
I was asked the question in my
disability paperwork,
WHAT WERE YOU ABLE TO DO BEFORE
CUSHING’S THAT YOU CAN NOT DO NOW? I have edited my response to TEN
specific daily things:
Get out of bed, take
a shower, and wash hair. Pick an outfit, do my hair, make up, brush
teeth, dress, eat breakfast. Used to do all in one hour before going to
work. Now it takes me over the course
of a few days. I have to pick what is important. My hair has
completely thinned out and I have lost hair in the front. I have always
had really long healthy hair.
Sort laundry without
having to stop halfway through or waiting for someone to come home and help me.
Do three or four loads of laundry in one day and still have enough energy to go
out to dinner or see a friend the same day.
Writing in general,
my bones and joints in my hands start to get sore when I hand write. Not suffer
from muscles spasms in my neck and throat.
Make dinner for my
husband. Use the stove with pots and pans, chop vegetables, move around fast in
kitchen preparing a dinner and dessert. My joints and bone in hands hurt if I
try to chop vegetables for long. I can not stand in kitchen because hip bones
hurt too much. I have to sit down and rest. A 30 minute meal can now take
2 hours. Then if I spend my time doing that I have to go lay down and rest with
my sleep apnea mask on for at least 1 hour.
Keep mental lists,
now I have to write everything down even the smallest tasks like reminders to
have husband empty dishwasher. Going shopping to many stores like the mall
without worrying if I am overdoing it and will end up in bed the whole entire
next day.
If I swim I get
fatigued, lightheaded. We have a pool and I have not swam in it in over a year
by myself because I am afraid I will not be able to manage my pain or fatigue
and will hurt myself by doing too much. By doing too much I mean being in the
pool for more than an hour. I used to swim laps, do water aerobics in pool,
dive and jump in pool all on my own. I can not do any of this anymore.
I had memory
problems and couldn’t remember where I was headed when driving. I ended
up in ER three times because of this. I was on a freeway that I traveled
to regularly.
Controlling my
emotions. I will be crying one hour, then full of anger 2 hours later.
You get surges of anger and you don’t know why you are angry. I was never like
this before. Physically this drains your body and I can only sleep after the
surges go away because your brain is mentally tired and your body has been
through a huge rush of adrenaline and needs to rest.
I have been
vegetarian, gluten free, on a high protein low carb diet. Every three weeks or
so I have to change my whole way of eating because my body becomes sensitive to
foods and starts creating more symptoms of Cushings in my body by giving me
muscle spasms. I never had to do this before.
Spend as much time
with my nieces unlimited.
Tolerate medicine:
My body is extremely sensitive to different types of medication or just doesn’t
absorb it. I usually experience side effects from medicine earlier than most
people. For example, if it takes 3 weeks for a medicine to start working I feel
it within the first week.
I know this is a long list and a lot
for people to read through. It is not all inclusive. After surgery, the
muscles and body need to repair themselves. This may take years. I remember
when my endocrinologist first told me, be careful because you might suffer
weakness in your leg while driving. This did not compute.
After surgery, one of the medical
expenses not covered by insurance, is to use a endocrinologist in Los Angeles
who specializes in treatment and research in my disease. We are lucky he
is on our area. This specialist will work with your current doctor.
Cortisol and hormone replacement after surgery is necessary to live. Our body
can not live without cortisol. This can take 1 to 3 years to wean off
cortisol replacement to determine if your pituitary is working. Adrenal failure
can cause a person to die so it is extremely important for a person to have a
specialist after surgery of this type.
It takes a lot of mental energy to
write these updates and keep this fight going against insurance and trying to
obtain disability. Stress triggers many of the symptoms. Many people have
emailed me and have offered emotional support now. I will continue to share with
you what I can. I truly feel blessed by the help people are providing us
in any way they can. I want to be honest and open with those who
support my husband and I. My husband is my biggest supporter. Thank you.
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