`You're thinking about something, my dear, and that makes you forget to talk. I can't tell you just now what the moral of that is, but I shall remember it in a bit.'
"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9
"'Perhaps it hasn't one,' Alice ventured to remark. "'Tut, tut, child!' said the Duchess. 'Everything's got a moral, if only you can find it.'"
- Lewis Carroll, Alice in Wonderland, Ch. 9
Today, it has been two years since receiving
that ill-fated dose of Levaquin. I haven’t
posted in a while; I have been trying to use this time to reflect on how my
life has changed, and to find my new role in life. At times, I feel so consumed by it all, I wish I
could run away and just hide. While other
times, I feel I have embraced what has happened. I have dealt with chronic illness for six years
now, first with my daughter's epilepsy, and now my Quinolone Toxicity and peripheral
neuropathy. Having been a
healthcare provider as an Occupational Therapist, I have insight from all three
perspectives; as a caregiver at work, a caregiver in the home, and now as the
care receiver. I will
say the latter, has taught me the most. The
following are valuable lessons I have learned dealing with chronic
illnesses from all three points of views, especially the past 2 years. While a few of these will be familiar from
previous blog posts, others are new. I don’t necessarily always remember these
lessons, and I probably need to review them myself at times. This list is a stream of consciousness. I thought it would be short, but it kept
growing. I would love to hear from you. What lessons have you learned?
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Make doctor appointments
on Mondays or early in the week. On
Fridays everyone in the office is ready for the weekend, including the
doctor. He may not be as focused on you,
but more focused on his weekend getaway.
Make appointments
first thing in the morning or first appointment after lunch, this will reduce
your wait time.
Bring something to
read, in case you could not get the first appointment.
Ask your doctor how
he is doing. He probably doesn’t get
asked this much. He spends all day
listening to other people constant complaints, and probably very few have asked
him about his day.
Fire your doctor if
he is not working with you, you feel he does not fully listen, or you don’t
trust his decisions.
Always make a list of questions you have for your
doctor. In such a short amount of time spent with him you will more than
likely forget something.
Educate yourself
about your diagnosis. Knowledge is power
and you can have a much more meaningful conversation with your doctor if you
know all of the medical terms, treatment options and available testing. Read books, research online, talk to others
with the same diagnosis.
Take notes or have someone go with you to take
notes.
Keep track of all medical information. Get copies of medical records from all of
your doctors.
Have doctors share information. Make sure
all tests are forwarded to all your doctors with a summary note. This will
help stop duplicate testing.
Start a "Care Book" (See page)
BE YOUR OWN MEDICAL ADVOCATE!
Be prepared to
fight insurance. Insurance will always
say no the first 2-3 times, but be persistent.
They are hoping you will give up, that is what they are counting on. I found a well worded letter can still do the
trick.
Research what medication
you are being prescribed! Ask the nurse
what they are injecting into your IV before
they do it.
Medication can help
with pain, and don’t be afraid to use them.
But proceed with caution!
Know you are not
alone; 1 in2 people have a chronic illness.
Find support groups even if they are online. People you meet online can sometimes be your
best support.
Remember most of
the people you meet in online groups, are the ones that have not yet gotten better. Those that have improved usually are no
longer actively posting.
Share your story,
so others can learn from you. Through
sharing, you may receive advice, a doctor suggestion, or an idea you have never
thought of before, that may make a difference in your health.
The Internet is not
always right.
Educate your family
and friends if they are willing to listen.
Realize not everyone
is going to “get it”. Some will always
think it is your fault; it is due to too much stress, lack of faith. You have to learn to move on, and not get
stressed that they don’t understand. Find people that do understand.
It is NOT your
fault that you are suffering from a chronic illness, or any illness for that
matter. We are human and are susceptible
to all kinds of diseases, human error, or accidents. Instead of asking why me, ask why not
me? We will all get something, at some
point.
No one experiences pain the
same, and how it affects a person depends on their lifestyle and
responsibilities.
It is o.k. to
cry…you may even have a pool of tears.
Grieving for your former self is normal.
Watch for signs of
depression.
Focus on what is
“right” with you.
Write a
journal. Mine is online, but yours
doesn’t have to be. It is a good way to
help with frustrations and anxiousness.
Be positive,
surround yourself with positive people.
Avoid negativity. That will not
help you get better.
Ask for help.
Rely on your church,
friends, and family for support. They
want to help.
It is hard to
accept help!
In helping others,
send cards, make a phone call, send an email, bring food in disposable
containers, it is ok if you don’t know what to say. Don’t be embarrassed that you have waited too
late to call. Any time is better than
not at all.
Teach your kids all
household chores; you never know when they will need to help because you are
unable to do it.
Remember, your
family is going though this as well. It
is not just you affected by the chronic illness. Not all of them will react the same way.
If you are having a
bad, crabby day….warn your family, and then go to your room!
Get a temporary
handicapped hang tag, even if you never use it. At least that option is there if the situation
arises.
Use the handicapped
space when you need it.
Don’t abuse your
handicapped tag. If there is a close
space that is still reasonable for you, save the handicapped space for those
who need it more.
Don’t be ashamed to
use assistive devices.
Get outside of your
comfort zone, test yourself, you may have gotten better and not know it. Take a trip!
Pace yourself,
don’t overdo it.
Plan your day, allow
extra time than normal incase fatigue hits.
It is o.k. to do
nothing. Take a nap.
Get help in the
home, if your are able.
No pain, no gain no
longer applies for exercise. Slow and
easy wins the race from now on.
Eat healthy.
Plan out your
weekly meals: Ask friends to prepare
meals that can be stored in the freezer for future use. If your husband travels, have him grill extra
chicken before he leaves to be used later in the week. If you are having a good day, make things to
stock in your freezer for when you are not feeling well. Use www.emeals.com
for food planning, and your grocery list.
Chocolate cake is
perfectly acceptable for your kids for breakfast.
Pets can be the
best comfort. They are good listeners
and don’t give bad advice.
Beds can go unmade.
Read something NOT
related to your illness. Take a break
from it.
Listen to uplifting
music.
Crow a little.
Be grateful!
Sing!
Laugh!
Pray!
LIVE!!
“One day at a time--this
is enough. Do not look back and grieve over the past for it is gone; and do not
be troubled about the future, for it has not yet come. Live in the present, and
make it so beautiful it will be worth remembering.” - Ida Scott Taylor
Thanks for Reading!
Thanks for Reading!