Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Support and Encouragement >> What has masto taught you? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301539284 Message started by jbean on 03/30/11 at 15:41:24

Title: What has masto taught you?
Post by jbean on 03/30/11 at 15:41:24

Every experience teaches us something. What have you learned from having a mast cell problem ? I'm curious to see what others are learning from their experience living with these sorts of conditions.

I have learned that I'm not always in control, and how to live with that concept. It has taught me humilty and the power of faith.

What has it taught you?

Title: Re: What has masto taught you?
Post by Starflower on 03/31/11 at 00:38:05

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 :D

Heather

Title: Re: What has masto taught you?
Post by Josie on 03/31/11 at 03:13:22

Hi J bean ,

I have learnt to listen to my body, that I can use my strengths to compensate for my limitations. That I don't have control over my illness but in knowing my body I can protect myself a great deal . That I am still me . That many of my answers , in terms of daily management lie with me , not a doctor .

I live by the poem :-

Have the

Courage to change the things you can

Senerity to accept the things I can't

And the

Wisdom to know the the difference

This is not as straight forward as it may seem. A big part for me has been the senerity . As it has meant me having to see where my energy was being wasted on trying to change things that were now me ;-)

I have always been fascinated by the body . I did a paper on compliment and an alternative treatment for anphylaxis in a patient on beta blockers in my biology , in the final year at university ( college ) So my interest in immunology was started 10years ago. But reading again with this being my illness has given me a real insight , beyond the biology . I gave a copy of that paper to a paramedic who had attended me a few times as he saw my anaphylaxis but also saw it was not text book in origin and progression .

many hugs

Josie

Title: Re: What has masto taught you?
Post by Joan on 04/01/11 at 11:51:22

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!

Title: Addendum
Post by Joan on 04/02/11 at 18:34:20

----and keep hydrated!

Title: Re: What has masto taught you?
Post by cjoy on 04/05/11 at 10:25:16

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

Title: Re: What has masto taught you?
Post by jbean on 04/05/11 at 11:17:58

Lovely answers all! It's great to hear all of these bits of wisdom, thanks so much and keep them coming!

Title: Re: What has masto taught you?
Post by missybean on 05/14/11 at 16:56:57

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

Title: Re: What has masto taught you?
Post by cjoy on 05/14/11 at 17:27:34

Wow. That soul with a body concept is a really good one. I have never heard it before but it is profound. We are so much more than the limitations of our bodies. Thanks!

Title: Re: What has masto taught you?
Post by Keri on 06/01/11 at 22:16:12

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

Title: Re: What has masto taught you?
Post by DeborahW, Founder on 06/03/11 at 16:41:57

Cute, Keri! LOL

Title: Re: What has masto taught you?
Post by Lisa on 06/04/11 at 14:43:07

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!!!!!!!!!!!!!!!!!!! :)

Title: Re: What has masto taught you?
Post by caormiston on 06/05/11 at 16:10:38

Hi!

Soul with a body - love it Melissa! Love all the rest too - just reading these makes me feel better.

I've learned you CAN teach an old dog (me - I love dogs) new tricks. I've learned soooo much from you young people (young is under 90!) and I appreciate your curiosity, intellect and willingness to share.

I've also learned that I have to let some things go. Not just the little things like the garden I've loved to tend, the house I've tried to make a home, but some relationships that I realize are not going to change, no matter how hard I try. I have to step back and let them go, just to save my own health. So, the garden will be small, the house too and some people will no longer get under my skin!

Candace

Title: Re: What has masto taught you?
Post by missybean on 06/06/11 at 07:25:00

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

Title: Re: What has masto taught you?
Post by GI Joe on 08/17/11 at 13:51:44

I know this is an old thread but I have learned to be thankful for every moment with my family and savor every experience because it can always be worse or end quickly.

Title: Re: What has masto taught you?
Post by kimtg68 on 08/17/11 at 14:07:19

I've learned to be more sympathetic and understanding towards those who suffer with long term illness.

I've learned to be a better advocate not just for my health but just myself in general.

I KNOW I still have much more to learn.

Most of all I have gained a faith I never had before.

Kim