I got a colostomy in April of 2013. My doctor expected that to resolve the
majority of my systemic symptoms, as the long term bleeding and physical stress
that necessitated the surgery were also triggering my mast cells. His aftercare instructions were very clear: don’t
lift anything heavy, eat a low residue diet, do not go anywhere strange, stay
out of pain and do not get upset. If I
could do all these things, he expected my mast cell symptoms to subside
considerably.
I had five weeks of no mast cell activation. I lost my swollen, pregnant midsection. The act of sitting, walking, existing, was no
longer inherently painful. I had
energy. I was getting better.
Six weeks after the surgery, my ex-boyfriend left me
abruptly almost four years into our relationship. We tried to work it out. I think it might have been alright, but then
we found out we had to move.
We had moved into this apartment a year and a half
earlier. I was clear when we looked at
the apartment that I didn’t want to move until I bought a house. Moving is dangerous for me. New apartments, with the possibility of
hidden mold and environmental triggers, are dangerous for me. I have true IgE allergies to several
environmental allergens and exposure to any one of them can cause
anaphylaxis.
Our landlord knew this and reassured us repeatedly that we
didn’t need a long term lease because he would never make us leave. He lied.
When he told us we had to leave, I completely broke down. “This could take years off my life,” I
sobbed, dignity lost. “I feel bad about
that,” he muttered. We were excellent
tenants, he agreed, he just wanted his daughter to live there instead. He didn’t care. They never do.
The next day, I got a bowel obstruction. The mast cell symptoms returned in force, all
at once. “I told you not to get upset,”
my doctor said, as if I could possibly control any of this. But I understood his point. When you have mast cell disease, the ones you
love can truly be your undoing.
I ended my relationship for good in February. I would rather be alone than be with someone
who handles my illness so poorly, though this is no comfort when there is no one
moving against me at night. I wanted to
stay, but I could no longer ignore the fact that the stress of trying to fix
this had taken a very serious physical toll on me. It wasn’t worth my life. And my heart was already broken, anyway.
I have been through a lot, all things considered. It has made me stronger, all of it, even the
things I wish hadn’t happened. Every time
I am grateful for my steel will, for my ability to make hard decisions without
hesitation, for my ability to not get upset every time my body fails me in a
new way, I have to admit that it was the hard times that made me this way. I can’t imagine surviving any other way. But the wounds - those are real, too.
There are nights when I can’t sleep and start sobbing
uncontrollably. I press my hands against
my chest, against the hardness of my sorrow.
I run my fingers along the edge and it is shaped like a broken
heart. It feels like being half awake
and reaching for him, before I know where I am and that he will never be there
again. There is no physical pain on
earth that can compare to the memory of a love that is no longer real.
My mother used to have a seashell in her bathroom. When I was little, she would hold it up to my
ear and I could hear the ocean. I feel
sorry for that shell now. It remembers the
sound of the waves but can never go back.
I know what that’s like.
They say you can’t die of a broken heart. Maybe they’re right. But years from now, when they open me up to
see what happened, they’ll find glittering shards in my chest and know that
they cut me every time I breathed.
What a beautifully honest post. I am so sorry you had to go through this. :(
ReplyDeleteI read this post because I actually have had very severe reactions to getting upset about "being wronged" by someone. Sometimes, we just have to find any little zen we can and cling to it, for the sake of life. I've never told anyone about how my emotions are tied to reactions, because it is so hard for others to understand without thinking we are exaggerating, or that it is all in our head. I think emotion may be a bigger trigger for me than food, and definitely the combination is dangerous. I know if I've been upset that even some "safe" foods are out of the question, and I should drink my dinner. [which does sound kind of funny ;) ] What a vengeful condition we live with!
Love and support,
Shelby
Lisa.. my heart hurts for you right now. I wished we could fix the brokenness and the pain. I also wonder why the doctors say avoid stress? As if we would search it out?!? Nobody wants to engage stress intentionally, and then to be immersed in it, trying to find a way out is pure STRESS! I too find this is my worst trigger for anaphylaxis that I'm unaware of... as it sneaks up on me and zaps me into an emotional whirlwind and spins me out of control. I wind up in a state of cracked thoughts, snapped nerves and a ball of confusion...not knowing how to get my head,body and spirit back to a "normal" function. You and your heart are in my thoughts and prayers... xoxox
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