New to this disease

Hi Addie,

It's a pleasure to visit with you.  I'm now 63 and have lived with Systemic Mastocytosis for 17 years.  Just for background,  I've had many, many anaphylactic shock attacks.  Any many, many full blown attacks with 911 calls, ambulance rides to the ER, etc, etc.  I was finally diagnosed at a research hospital by a dermatologist and a hematologist/oncologist.  The diagnosis was confirmed by bone marrow biopsy at NIH in Bethesda, MD.

I have few questions.

What type of Doctor is diagnosing you?  PCP, Dermatologist, Oncologist, etc.

What previous diagnosis have you had?

Have you had a bone marrow biopsy?

What meds are you taking on a prophylactic standpoint for this diagnosis?

Actual anaphylactic shock events are not vague.  If you have one,  you'll know it.

Are you keeping the proper meds with you at all times to take in the event of the onset of an attack.

Suggestions:  Much of living with this disorder involves our thinking.  Stay positive,  count your blessings, know that life is a precious gift.  Refuse to take psychological possession of this or any disorder.  And, most of the things we endure in life are opportunities for us to have a positive impact on others lives.

Sunlight and exercise:  Try and get some daily.  Sunlight helps.  It helps everything.  Exercise at whatever level you're able.  Only we can tell what is okay and what is too much.  Some days a walk around the block is all we can do or muster for the day.  Other times I can go on a bike ride for several miles.

Reduce stress:  Stress is not necessarily from having multiple things to do.  Everybody "needs" something to do.

The stress, very often, comes from how we "react" to the things we have to do.  More organization, and a healthy dose of minimalization can reduce a ton of stress.  Don't sweat the small stuff.  Help something else live.  Grow a small garden if you can.  It's very therapeutic. 

Take care of your gut.  We are all bombarded daily with chemicals.  Chemicals in foods, herbicides, pesticides, preservatives, medications, clothing, etc.  Eating to live and not living to eat has helped me tremendously.  Find out what fresh fruits and vegetables will benefit you.  I make my drink of choice, water.  Be disciplined about your diet.  It has very little to do with what tastes good.  It's much more about what makes you fell good.  Try to, as much as possible, steer clear of synthetic clothing.   A very simple wardrobe of 100% cotton garments is not expensive.  Neither is a diet of fresh fruits and vegetables.

In society today, it's become "normal" and even "expected" to have some sort of electronic device as an appendage to our body.  Constant exposure to these electromagnetic waves ?????

I have endured and survived what I have, primarily, because of my faith in God.  And my faith in my healer, Jesus Christ. Mathew 17:20 “For truly I tell you, if you have faith the size of a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” …

And lastly,  laugh and love.  Everybody needs someone to love.  And everybody needs to "be" loved.  My wife is my most wonderful blessing.  We planted a great fall garden with 35 vegetables and 11 herbs.  The squash, beans and pumpkins are starting to flower.  And the Marigolds are about a week away