I've learned to pay attention to my body, take my health seriously, and to generally just take care of myself better!  I can't be a good mother, wife, daughter, colleague, etc... if I don't take care of myself first.  I've learned to say NO when I'd rather not do something.  I've learned how to prioritize and keep my "to-do" lists to a reasonable level... that's huge in my line of work.  

I've also gained a deep appreciation for the "normal" human body and a crash-course education in immunology

Heather

The most important thing I've learned from having masto is about recovery.  In order to recover and maintain to the fullest extent, one has to do EVERYTHING below, and all at once.  That means all of these:

--Find an expert doctor who believes you and respects your knowledge and opinions

--Accept the diagnosis if you have proof that it's correct

--Educate yourself about the disorder

--Take the right meds and enough of them

--Identify your triggers and avoid them scrupulously

--Commit to the lifestyle changes needed to allow your body to heal

--Research the correct diet and be strict about it

--Get enough sleep

--Rest extra during the day

--Restrict your schedule to something manageable

--Commit to limiting stress

--Take ultra good care of yourself, which includes educating your loved ones and enlisting others to support taking care of yourself

--Maintain an exercise plan of increasingly difficulty, even if it means starting with walking from the bedroom to the front door.

--Use meds and/or dietary supplements to keep inflammation low

--Tune in to your body's "Early Warning System," the initial signs and symptoms that you're heading into a flare-up.  Increase medications and rest until you feel stable again, before the flare becomes a crisis.

--Limit or correct other factors, as much as possible, that cause you additional pain or discomfort or contribute to your not feeling well, such as excess weight, allergies, depression,etc.

--As you feel better, practice making adjustments in your life based on how each day is going.

--Maintain HOPE!

I don't pretend to have all this mastered.  I'm still a work in progress!

Excellent suggestions!  Thanks!  What I have learned to date is that I have a LOT more to learn!  

I have learned to put myself first more, because if mama isn't well she can't take care of no one.

I have learned to say no. I don't have to apologize if I can't do certain things or go certain places. I can say no and I don't have to feel bad about it.

I learned the power of the mind is huge! At least when it comes to my situation.

I learned to trust my gut.

I learned that if I begin to see myself as a soul with a body rather than a body with a soul it makes me feel a heck of a lot better.

I learned that you can make great friends without ever meeting them in the flesh.

I love all you guys!

Melissa

HI everyone,
                 I have learned that I am not superwoman, anymore!

I have learned to take one day at a time.

That when I die I want to go quickly. (at one stage I thought I was dieing as they did not know what was wrong with me, it was 3 months of shear hell).

You find out who your friends really are.

That the computer is my best friend.

Any time awake is not wasted.

Food is not everything (I found this out when I lost taste buds for three months)

Being able to direct your fork to your mouth is a skill (especially when your coordination is gone.)

You can live a long time without food.

Treat your dog well, he keeps a constant vigil when you are sick and keeps your feet warm when its cold.

Doctors dont know anything.

Even a dry biscuit looks good.

Remember to keep a good supply of reading material in the toilet.

Always read everything before ingesting.

Dont believe every diagnoses.

You are your own best researcher.

You are not going mad.

I can say NO and not feel bad.

Complaining changes nothing. Crying is a trigger and now I have an even better excuse to turn down sex when I dont feel like it.

They say pain is a good teacher therefor I must have a phd or at least mast..ers

Hope this gives you a chuckle thanks for making the suggestion on the subject didn't realise I learned so much whilst being sick.

one more..I learned i still have a good sense of humour.

Kind regards
Keri

What has masto taught me?

-  That the word "RARE" does not mean that I don't have that thing!

-  That just because the word "RARE" does apply to my situation, it doesn't mean that an answer doesn't exist!

-   That just because my doctor doesn't know the answer that there isn't a doctor out there somewhere who might!

-   That if I choose to, I can find the answers for my problems for myself without having to wait, impotently, while I HOPE that some doctor will find it for me instead!!

-   It's taught me to FIGHT for my answers!

-  It's forced me to change, always for the BETTER!!

-  It's made me see that life continues and that I can indeed learn to LIVE with a rare disorder and that it doesn't have to ruin my life!!  If I allow it to ruin my life, then that was my own choice through the decisions I've made on my own.

-  It's taught me to STUDY, to THINK, and to REASON THINGS OUT until I can make some connections and gain UNDERSTANDING!!

-  I am not worse off for having gotten sick with this disease.  Instead, it's quite the opposite.  I'm a better person and this disease has instead ENRICHED my life by allowing me to learn things I never thought I could learn, by showing me capacities and strengths within myself that I never knew I had, and by bringing me into contact with some PRETTY INCREDIBLE PEOPLE!!!!!!!!!!

WE ARE OVERCOMERS!!!!!!!!!!!!!!!!!!!

Lisa- I have to agree with you. I didn't realize how smart and capable I am until I got sick. How I have to immerse myself in medical information and teach myself. I have really learned a lot about myself and it did make me a better person too! Well said!
Melissa