On change and fighting the good fight

When I was in college, one of my friends had an eye-opening experience when she went home on winter break. 

“My parents look old,” she admitted, visibly distressed by this realization.  “Like a lot older than last summer.  I never noticed them aging before.” 

We don’t notice how dramatically things change when it’s gradual.  Her parents had never aged to her eyes because she saw them every day.  It’s the same way with chronic illness, at least for me.

In the beginning, it was just being tired, sinus congestion, allergy-type symptoms.  I slept a lot, felt sick a lot, but it didn’t really affect my life.  Then it was pills.  And more pills.  Specialists.  Endless tests, the wet heat of IV contrast dye, hundreds of tubes sloshing full of my blood.  IV push meds in emergency rooms, the burn of subcutaneous injections, the saline taste of IV infusions.  The false hope of an incorrect diagnosis.  The slinking fear that you won’t be believed when you have to explain one more time that you don’t have what you thought you had.  GI bleeds, organ damage, short term disability.  Hospitalizations, surgeries, central lines, hep locking, sterile dressings.  Anaphylaxis, more anaphylaxis.  Circular bruises on my thighs from autoinjectors.  Snuggling up with two liters of Lactated Ringer’s at bedtime.  Anyone can see that the life I have now in no way resembles the life I had when I started this. 

I always knew it was serious, even before I knew what it was.  I never underestimated this disease.  But I barely noticed how much harder it was for me to live a functional life, how many medicines I needed, how many surgical interventions were necessary, how my bathroom was stocked with first aid supplies, colostomy supplies, PICC line supplies.  I lost my frame of reference and this all feels normal.  Sometimes it feels like my life was always like this. 

I am never more aware of how sick I am than when I am in the hospital.  When I was scheduling my PICC line, the PA called me to go over my emergency protocol for shock, vascillating on whether it might be safer to place the line in the emergency room.  When the visiting nurse came to change my dressing, she was visibly frightened to touch my skin.  When I had major surgery last year, it took weeks of coordinating with several doctors to agree on how I should prep for surgery, what medications I needed for anesthesia, what the plan was for my recovery.  It is a reminder that even among medical professionals, my disease is intimidating and unpredictable.  We can only ever be so safe.

My disease has reached a point where I am so reactive that any procedure requires planning and premedication.  This is both a good and a bad thing.  It’s a bummer because I’m sicker; it’s a good thing because I get taken very seriously.  Even someone who knows nothing about mast cell disease can see that I am sick.  This is actually helpful.  It’s hard to argue the severity of disease when someone has a central line, an ostomy, and many surgical scars. 

This hospitalization has been much easier than the rest.  Every person I have come in contact with during this stay knows at least a little about mast cell disease.  The fact that they all remembered was that mast cell patients could progress very quickly to a dangerous situation.  Most of them knew some anecdotal things, like Darier’s sign and the flushing reaction.  I have gotten everything I needed in a reasonable amount of time.  They have clearly thought a lot about how my disease affects my other systems and test results.  They are aware that a nebulous explanation of why I have been so sick recently isn’t enough for someone like me.

I have had no problems except for one incident in which the floor resident insisted that I didn’t need epinephrine while I was anaphylaxing.  It was upsetting, but was straightened out.  It is frustrating and scary when things like this happen because no matter how prepared I am, I am still often at the mercy of authority figures.  And if those authority figures aren’t very, very well versed in mast cell disease, they can make decisions that can harm me.  We are our own best advocates but that matters very little if our providers don’t know our disease. 

It is getting better, if my current hospital stay is any indication.  The word is getting out.  More people have at least heard of mast cell disease, know that it can cause sudden, severe anaphylaxis, know that we react to things that most people never do and in ways that might seem strange.  No one has made me feel crazy, accused me of being drug seeking or treated me disrespectfully.  If they wanted to do something that wasn’t appropriate for mast cell patients, they called to confirm before proceeding. 

I know it doesn’t always seem like it, but every time we present for medical care, we are fighting the good fight. 

Keep fighting.