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The things I took for granted

I spent most of this week in the hospital.  I had anaphylaxis Sunday night at home, without an obvious trigger.  I used epi, called 911 and was transported to my hospital by ambulance.  I spent a few hours in the emergency department, received substantial doses of IV antihistamines and steroids, and was admitted.  I anaphylaxed the following day, and the day after that, despite employing serious measures to avoid it. 

This hospitalization was different.  I have reached a point in my disease where I am sick enough and complicated enough that doctors, even those who don’t know me, acknowledge that I am the authority on my health.  They no longer pretend to know more about my disease than I do; they allow me to determine what tests I need, and which are unnecessary.  They ask me questions like, “Is this a bowel obstruction?” and know that I will know the answer.  They monitor me very, very closely, but know that fretting over my wildly erratic blood pressure and pulse is likely fruitless.  They are sympathetic, but know there’s not much to be done that I’m not already doing. 
I both love and hate being inpatient at the hospital.  I hate that I am not home, that I am tethered to things even more than I am in my regular life, but I love that if something goes wrong, someone will notice.  I rest well at the hospital, in spite of the general noisiness and frequent intrusions for vital signs, exams, tests.  I am not worried about anaphylaxing in my sleep.  I am not afraid I won’t wake up.

It used to be that I had to defend the truth of my illness.  People didn’t believe me, or if they did, often didn’t believe the severity.  I looked grossly normal.  My life looked grossly normal.  What I suffered, I did alone; people knew I worked and lived a relatively active life, but never saw the nights I spent throwing up or sleeping through entire days.  It may have frustrated me, but it was also a gift.  If I was able to hide my disease, whether I wanted to or not, it meant that I was healthy enough to function.  I didn’t appreciate what this meant until now.

I am no longer mistaken for being healthy.  I never will be again.  My skin is permanently flushed, with only the intensity varying; I am swollen and squishy from steroids and edema; my abdomen is distended from poor GI motility; my PICC line winds along my arm, taped and waiting.  I take massive doses of medications and no one even bats an eye; being administered 350 mg of IV Benadryl over the course of a day (approximately equivalent to 1400 mg by mouth) isn’t even noteworthy.  If I am admitted to the hospital, my doctors come to see me themselves rather than send emissaries. 

I slept for 16 hours last night.  I didn’t wake to eat, drink or go to the bathroom.  My sister came in to check on me, unplugged and took my laptop, and generally was noisy for a few minutes at my bedside.  I didn’t even notice. More than any other thing it has taken from me, I feel the loss of time.  My days are devoured by this disease.  Everything feels urgent, because I never know when I will be able to do it again.  On the days when I wake early and can use my entire day, it feels amazing.  But there aren’t many of those any more.  The need to sleep is too overpowering. 

I require a lot of help to facilitate my life.  I used to be able to power through, even if it was hard.  That’s impossible now.  I used to be naïve about this.  I used to think that if I wanted it enough, I would be able to do something.  That’s untrue.  My will power is formidable, but it cannot enable me physically. I wish I had known that before.  I wish someone had told me that being able to clean my house, work every day, cook dinner, meant that I still had some health.  I wouldn’t have believed people who told me I would struggle so hard to independent at the age of 30.  I wish I had appreciated these things more. 

I used to participate in the 3-day for the Cure.  I walked 60 miles in three days a grand total of five times in four different cities.  I did all the training, even though I was sore and tired.  I walked in thundering rain and 100° heat, the watchful sun hovering overhead. 

I used to rock climb. I wasn’t very good at it, but I did it anyway.  I used to do yoga five days a week, exercise every night.  I had to medicate and be very careful, but I could do it. 

I used to eat whatever I wanted.  If it upset my stomach, I could still make that choice without fear of hospitalization.  I didn’t need to plan everything that went into my mouth.  I didn’t have to worry about how my body would process it and eliminate it. 

I used to be able to stay up late and still wake up for work.  I might not feel great, but I could do it.  Now I worry I won’t wake up in time, no matter how much I sleep.  I have to build redundancies into my system to achieve basic, everyday things.

I used to be able to clean my apartment.  I used to be able to go food shopping.  Now I need people to help me do either. 

I took for granted that I would always be able to do the things I loved, if I wanted them badly enough.  I took for granted that I would always be able to live the life I wanted, if I worked hard enough.  I took for granted that being smart would keep me alive. 

I used to think that I would “get better,” that I would eventually get to a place where I could function normally, even if it required medical intervention.  That’s not going to happen.  This is the best I can hope for.  I will never get better than I am now. 

I am generally a positive person.  I am not giving up.  I will be raising hell for years, if only because I have the support of friends and family.  I will be flying to Seattle this summer, even if I need to ship my medical supplies ahead of me and carry IV push meds for in-transit emergencies.  I am very grateful for opportunities like that.  But it doesn’t change how sick I am. 

I think that people need to know this.  That the sick people in their life can’t just “try harder” or “suck it up.”  That you can steel yourself mentally but eventually your body will fail you, maybe forever.  That you can’t blame yourself when you at long last need help to do everything.  That it doesn’t make you less than anyone else.  That all you can do is try to live within the confines of what your health allows, and milk that for all its worth.  That your body is broken and that’s not your fault.

That we’re all doing the best we can.  And that’s all anyone can do, really.