This is probably the hardest time you'll face. There are
financial questions and issues, the question of how do you get care with no
insurance, disability, coping, what to expect, etc. Hopefully, this section will
serve to answer most of your questions.
One of the most important things is to understand as much as
you can about the disease. The article "When the DX
is myasthenia gravis" is written from a nurse's perspective but gives a lot
of information ranging from a case history leading to diagnosis, testing,
medications, crisis and more.
With the best case scenario, you have family support,
both emotional and financial. You have insurance. You don't have to worry about
where you will live or how you'll eat as you learn to cope and stabilize with
myasthenia gravis.
For many of us, we were/are our sole support financially
and the issue of care is probably the highest stressor. The first thing you need
to do is realize YOU are in control of your care. Be a responsible patient and
learn what you can. Being on this site shows that you have that desire. No one
else can take as much control over your disease as you can.
Keep a diary. Write your symptoms, how they change from day to
day or hour by hour, any difficulties you are having and how you feel. How you
feel can be physical or emotional. If you write poetry, a great place to visit
is
Spyder's Poetry Empire.
This is a place where you can read poetry from others and even publish your own
on the web.
Don't be too PROUD to ask for help. Most family and
friends want to help but don't know what to ask, what to offer, etc. Coping with
this disease is 95% friends, family and support. Ask for what you need. If you
belong to a church group, utilize their resources, as well.
Find the Myasthenia Gravis chapter in your local area.
They are a resource full of help. Some chapters are more active than others
but you'll find the listing here.
Contact your local Muscular Dystrophy clinic and set
up an appointment. With or without insurance, they will treat you. If you
already have a diagnosis of MG, you will see a specialist, be able to interact
with a social worker, discuss home needs and other non medical issues you are
facing. Although MG is NOT a dystrophy (to be a true muscular dystrophy
disease, the muscle actually atrophies, or dies with non use. MG does not
cause atrophy), it is listed as one of the diseases that falls under the MD
tree. A list of clinics can be found here.
Make a list of your medications and side effects,
contact information, the doctor's contact info that you've been seeing,
hospital of choice and symptoms of an MG Crisis. Keep one of these "cards"
with you at all times and give copies to those that are close to you. There
may be a time when you are unable to speak or breath and will need to convey
this information to health care providers.
Formalize a contact circle of family and friends. Try
to establish a rotating schedule of when they can call and check on you to
make sure you are ok. Whether you live alone or with family, there will be
times when you will be left by yourself and it is imperative that you receive
emergency care should you need it. Remember, the drugs that help can also
cause the symptoms of an MG Crisis.
Get a medicine planner and try to find one that
holds meds for several periods during the day and for a
week. Divide your meds into the portions/times of day that you take them. This
helps so that you don't have to concentrate on when you've taken what, helps
you remember to take your meds, helps family members monitor your medicine
intake and allows you to prepare your meds in advance, hopefully on a day you
feel "well".
If you are on ANY type of inhaler, get duplicates.
Have one in your purse, bedroom and room you stay in the most. If you have a
constant family member by you, have them keep one. Breathing problems can come
about in an instant and you don't want to be hunting around for an inhaler.
Contact your doctor for samples if necessary.
Have your immediate family members learn CPR, the
Heimlich maneuver and purchase a suction machine and an AMBU bag. Again, a
crisis can arise in an instant and it is much better to be prepared.
Try to get on food stamps. Single or family, if you've
lost your income even the smallest amount of assistance will help.
If you are without family support or are in an
alternate relationship (domestic partner, significant other, lover, etc.) Get
A POWER OF ATTORNEY FOR HEALTH CARE. There are free forms that with the proper
witnesses and notary signatures, will be legal for the person of your choice
to be there for you and make health care decisions if you cannot. You will
most likely also need to have a DURABLE POWER OF ATTORNEY so that they can act
on your behalf and pay bills, etc.
Formalize an ADVANCED DIRECTIVE. This discusses your
wishes in the event you are on life support. Don't feel that this is the
morbid side of things; this is the act of a responsible individual who has
taken the mental forethought to address issues that are common to myasthenia
gravis patients.
Make sure you have a working phone at all times. Most home
phones and ALL cell phones are required to at least provide 911 service even
if the phone is off. You can request a
free cell phone
just for this purpose.
The issue of medication
Trying to maintain a steady supply of medications can be
daunting in the early stages, especially prior to seeing an MDA clinic doctor if
that is your route of care. In my case, I knew my insurance was running out so I
tried to fill as many scripts as possible. I asked my local/primary doctor for
any samples she may have of meds I was currently taking.
There is also a site called
Needy Meds that gives information on
various drug company programs that sponsor free/low cost programs to assist in
getting medication. Many of these have to have the assistance of your local MD
but if you have a caring doctor, they and their staff are generally willing to
help you in any way they can. Sometimes, a pharmacist can be a great resource,
especially depending upon the program.