Living with Mast Cell Disease….Coming out of the Closet

ImageI’m coming out of the closet.  Yes you heard me right.  Not only am I coming out of the closet but because I’m doing that inconceivable “thing” , I won’t be “invisible” any longer.

As I was just writing my adoption blog about letting go of who you thought you were, I realized I have an added dimension to the grief and loss and letting go.  Invisible, chronic, Mast Cell Disease.

I have had to let go of the life I had planned.  The life I had worked so hard to get to.

 You know the one.  Where you push yourself beyond the edge doing for others, providing for your kids, saving for retirement so you can travel and enjoy life.  Yes, that one.

 The one that will never come to fruition.

No one ever see’s me sick.  Well, except for my dear friend Susan, who witnessed my Delhi Belly from hell and was such a good nurse.  Other than that..oh yes, and the time I took my daughter to a Buddhist Retreat in Thailand in the middle of the jungle. Climbing a mountain in sweltering heat and humidity wasn’t such a good idea.

I swelled up like a puffer fish.  I thought I was going to explode my skin was so tight with pain that brings tears to my eyes even now.

 I didn’t pee for three days and my lungs were so congested I knew I was as close to dying as I could get in the middle of the jungle. I was prepared to just roll off the floating meditation floor into the lake where the 75kg Thai catfish lay waiting.  What better place to go than on a Buddhist Retreat?

Who knew?  Mast cell disease did that.

 As it’s done with many things in my life.  Surgery to remove the endometrial nightmare in my belly caused me a three months stay in hospital with pelvic abcess, peritonitis, bowel obstruction and DVT’s.

 Who knew? Mast Cell degranulation of course.  Oh, and the time I was admitted to ICU with cardiac issues and eyes like the ones above.  Throw in a standard diagnosis of pericarditis and a stay of 2 weeks.  Kounis Syndrome.  Who knew?  Mast Cell Disease yet again.

 I could go on and on.  I can identify each and every event that relates back to Mast Cell disease.  Only then, I didn’t know.  How unfortunate for me because every “flare” caused just a bit more damage to organs that had already taken a beating from my “FINDING HEART HORSE” life.

This week has been a tough one.  The eyes that I can’t bear to touch and struggle to see the words on the computer.  The unrelenting pain of a total upper body spasm that woke me up last sunday night.  it was as if an elephant was sitting on my chest and I couldn’t move to do anything about it. The accumulation of fluid outside of my cells called  3rd spacing that is so painful.  A whole week spent in agony.  Who knew?  No one.  Not one single person except my “masto angels”.  That’s invisible…

I shouldn’t be like this.  There are thousands and thousands of us out there.  Not just mast cell patients but many such as Lupus, Fibro, CFIDs.  If it was the big “C” or a broken leg people would see. People would be bringing tuna casseroles and apple pies because thats what you do when someone is terribly ill and can’t manage.  Isn’t it?  It’s what I do when I know someone’s ill.

 I haven’t had a tuna casserole since I was seven.

We have to change the way people think about us, the invisible ones.

 That’s why I’m coming out of the closet.  To educate.  To give visuals.  To answer questions.

 To say..hey wait a minute..I’m in pain here.  Just because I don’t look sick  (well, except for the eyes this week) doesn’t mean I don’t exist.

 That we don’t need a help now and again.

 That the medical system doesn’t need to provide the diagnostic tools our doctors need.

 That the medications we need should be available, the emergency rooms aware of what we need done when we arrive in anaphylaxis.  So many more needs I could list.

And then, of course, just how does one live with an illness like this.  One that no one knows exists.  One where alot of the time you don’t look ill on the outside but your internal body is wracked with pain and your mast cells spewing out chemicals causing havoc with your systems.  Your liver, your kidneys, your spleen.  Every part of you, brain included has mast cells that can degranulate and cause problems.

It’s not an easy place to live..this mast cell hell.

 Priorities change.  Friends stop asking you to go places.  You can’t eat out. Your energy is gone before you have your morning coffee.

Your goal is to keep your mast cells stabilized and the slightest change may bring about chaos.

Attitude is so important.  As I was saying in the adoptee blog post…You have to let go of many aspects of who you thought you were.  

Expectations of others has to be released or you will only find disappointment.  It may take the rest of your life but letting go will ease the frustrations.  None of us are perfect.  

Weed out your friendships.  Surround yourself with supportive, caring people who you know you can depend on.  Illness gives ground for prioritizing friendships.  Our energy only goes so far and we need to spend it wisely.

Don’t become your diagnosis.  Believe it or not, inside this illness lies blessings.  Perhaps you haven’t found them yet.  Don’t stop looking.  Find the things you used to love and perhaps you can change things to enable you to do things, just in a different way when your energy allows.

You still have talents and skills even if you’ve had to stop working.  Inside those skills lie things you were never able to bring out before…find them.  I thought I was never going to be able to hang up my Nursing Cap.  I loved my job.  Now, I write books.  I hope to be able, energy willing to do some talks with youth when the books are ready to be signed.  I would have never been able to do this before.  I’m not saying I don’t have days, sometimes more than one where I can’t get off the couch but I hold the possibility of tomorrow being better close.

One of the most valuable talents you will find you have is simply relating to others who are in the same place, with the same illness or even another.  No one understands what we go through except someone else who is going through it too.  Its the same with adoptees.  We can be great support for many, for each other.  Don’t ever discount the importance of that.  

We can choose how we deal with this illness.  We are also allowed to have our couch days.  We have to learn to be as gentle and supportive of ourselves as we are with others.  Throw the guilt away.  It uses up too much needed energy and gets you nowhere.  We are in this together.

Come on…get out of the closet and stop being so invisible.

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11 thoughts on “Living with Mast Cell Disease….Coming out of the Closet

  1. Thank you for posting your eyes..I have posted my facial”breakouts” that I get when I am becoming more reactive.Such profound words….Thank you again!

  2. Thank you for mentioning how we get overlooked. I still don’t know why my poor husband didn’t get any casseroles while I was at my worst. He was working full time coming home and cooking for me and the family. I find it disappointing that people didn’t think we warranted a casserole (concern, caring and support.)

  3. Thank you for being so brave! I think many of us fear the repercussions of disclosing our disease to others…then we complain because others don’t understand what this disease is…physicians included! We are caught up in our own oxymoron of life. Thanks for opening that door…I will follow your lead… I am no longer going to be shy or candid, or fearful about disclosing the whole me, MASTO included. There are days I’m sure we’d all like to pretend it doesn’t exist, but the reality is, it is a part of who we are, we just don’t need to let it define us. We cannot be upset with others who have abandoned us when we haven’t explained what is wrong…Let’s make MASTO a known disease, not an invisible, dirty word!

    Thank you for your courage and your vulnerability! You are a powerful lady! I am in awe of you… your words bring me to tears each time…. Thank you for sharing your gift and speaking my heart so well. I am here tooo… not hiding…. I wish you more GOOD DAYS than bad days and less days of horrid memories… more happy, laughter filled memories!~

    And… foods that are reaction free… brought by many understanding friends on Good Days!
    xoxox

  4. You are very brave. I try to “come out of the closet” a bit here and there, but it is so hard to really describe what is happening to my body. I want my old body back. I just feel like I am whining or worse yet that I people think I am crazy when I try to tell people. So I just stay in the closet. Thank you for coming out. I wish I could.

    • Thanks Victoria…you just stepped out of the closet!
      Really, I get it..I understand how challenging it is to be invisible to those you want to “get it”.
      We can only do..what we can. Don’t put pressure on yourself to be anything other than you in this moment.

  5. Your words bring tears of joy and tears of heartfelt pain, understanding the suffering you have gone through and relating to it all to well. I am so happy to have you share my voice and I proudly follow your lead and shout out that I too have a mast cell disease that is making me sick…. I may not always look on the outside the way my body feels inside, but honestly, who does??? And, from now on, if someone asks how I’m feeling, they must be prepared to HEAR my answer. Thank you for challenging me to be outspoken! I wish you more GOOD DAYS than bad days…. xoxox

    • Sandy,
      I think I have it straightened out re your comments…so keep posting! I appreciate all of the comments. I’m so happy that this “stepping out of the closet” will help all of us gain our voice and grow as it has with adoptee rights. There is power in numbers and to get the medical community to see us and hear us takes time and numbers. We can do it together. In addition, I think it’s so important for our loved ones to know what is really going on and how we really feel instead of always putting on that “I’m okay face” or just just plain being ignored. It’s hurtful in so many ways not to be heard. xo

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