Raw

Summer packed up quickly. Humidity and too hot days were gone in an instant.  The days are short now, the last waves of golden autumn sun just barely shadows when I get home from work.  It was below freezing as I walked to work yesterday morning. Two nights ago, when I stepped outside, it smelled like snow.

I blinked and suddenly the ground was covered in dry leaves, the chorus of fall sung in deep musical gusts.  It really seems like just a moment ago I was eager for summer to end and now it has been gone for weeks.

This year’s autumn has been fraught with emotions.  I am having some big feelings these days and they are leeching from my other reservoirs: patience, kindness, love.   But mostly patience.  Loss of patience is where it shows the most.

We were so scared that Seth would die, and he didn’t but we still don’t really know how to feed him.  I read papers by the hundreds, make notes, send emails.  He is better but not good.  We still don’t have a good plan.  What happened with Seth felt immediate, traumatic. Like the pain of landing hard after falling, hands and knees stinging, blood seeping through the wounds.  Startling, alarming but survivable.

Then I picked up my phone and read a text telling me that my friend was having a bad reaction in an emergency room.  I relive that night constantly.  The back and forth, my let’s not panic attitude when we should have been panicking.  I am too used to this, I have seen us all be fine after so many panic-worthy episodes.  I am too used to us all being fine.  But we should have been panicking.  And by the time we understood what was happening, she had already had a stroke in her brainstem.

It feels so slow in my memory, like a parchment map being slowly unrolled.  By the time we knew where we were, it was too late.  There is this heavy sorrow inside of my heart that makes it hard to breathe.  We didn’t even know where we were and now she is locked inside of her body. It is suddenly the end of October and the sorrow doesn’t feel lighter. I am just learning to carry the weight.

Everything is a fight sometimes.  Every. Thing.  Insurance companies, doctors’ offices, hospitals and pharmacies all call to inform me about the ways in which bureaucracy and the broken American health care system is messing up my care again.  Not in a way that will kill me, just in a way that requires a patience I no longer have.  My eye has started twitching again when I have to explain something about my healthcare again to someone who has already heard it and was previously unmoved.

Someone called me today to say that they could waive part of my bill. I had a panic attack in a grocery store, because even receiving good news about my healthcare is too stressful right now.

I was medically cleared to fly to China by all relevant medical professionals but had to undergo a medical clearance by the airline since I needed to use an infusion pump during flight.  I filled out forms, provided notarized letters.  In their infinite wisdom, the airline decided it wasn’t safe for me to fly alone.

I paid a visit to my PCP’s office after having a mid-level nervous breakdown on the phone with a nurse about the fact that the airline may not let me go to China. I apologized for getting so upset.  While she wrote another letter for me, I told her that mast cell patients get labelled as psych patients a lot because we look fine until we are in liver failure or having a stroke. I told her about my friend.

She called the pharmacist working downstairs and he came up to notarize her letter.  After some back and forth, the airline relented and agreed I can fly with my pump.

My skin is burning this week. I am flushed a deep pink all over.  I realized today that I am reacting to my ketotifen after eighteen months of taking it every day without an issue.  More phone calls with my fingers pressing on my eyelid in a vain attempt to stop the twitching, heat creeping up the back of my neck.

Last week, some guy kept obstructing my path down the sidewalk in an attempt to make me donate to some charity.  When I finally maneuvered around him successfully, he made a snide comment.  I turned around and yelled at him.  Because get the fuck out of my way.

I am grieving and angry and impatient and raw and exposed.  In two weeks I will be in Hong Kong and it feels wrong that I am stable enough to travel to Asia, a sort of betrayal and survival’s guilt.

 

 

 

 

13 Responses

  1. Amy Jansen October 20, 2015 / 8:50 pm

    If I may, why do you insist on traveling if it is not going smooth …? Believe I do understand your desire to enjoy yourself as I am a traveler and been stuck in the USA since May.

    Sometimes is wise not to insist and by not resisting you are gaining more than what you are feeling as ….loosing. Learn to let go.

    If you need a pump in order to travel then you are not free enough to enjoy as one should. Furthermore; going to China is in and by itself a double twisted challenge. You are a western woman and you are not in excellent health. Last, China is a bit more polluted than USA and you have never been exposed to their pollutants. This is like throwing a match to a fire.

    Please excuse me if I caused ill feelings but I care for you and I would hate to hear your trip did not go well because of health issues.

    Regards

    Amy

    • Lisa Klimas October 20, 2015 / 11:51 pm

      I don’t need the pump to fly, I need the pump to administer medication and fluids every day in order to avoid hospitalization. It’s not like if I wait a year, I wouldn’t need IV meds. This will be my life for the rest of my life. I don’t need to let go of anything when I’m stable through the use of medications I administer myself.

      I have flown eight times in the last year with the pump. I insist on traveling because I’m never going to be healthier than I am right now. The idea that I shouldn’t travel because I use a pump overnight is ridiculous. I’m never going to be “free enough to enjoy it” by your description but I guess I’ll just try and enjoy my life anyway. You don’t have to think this is a good idea. All of my doctors are fine with me flying and traveling.

      I’m traveling with a friend who lives in Hong Kong and has travelled to mainland China many times.

      This entire comment was very condescending. Thanks.

  2. Sharon October 20, 2015 / 9:10 pm

    Lisa,

    Please do not be so hard on yourself. You do so much for so many! You Need this trip! You need to replenish.
    Sharon

  3. Sheena Larose October 20, 2015 / 9:29 pm

    I’m not sure how you do it, Lisa, but I am so very glad you do as it gives me hope. Your posts are gut wrenching at times, but so real. Thank you.

  4. Lucy October 20, 2015 / 9:39 pm

    We want to experience Hong Kong with you. I have been to Japan in my early 20’s, so happy I was able to travel in my youth.
    Enjoy your trip Lisa
    Send lots of photos to us.

  5. Julie October 20, 2015 / 10:36 pm

    <3 <3 <3

  6. Carole Reed October 21, 2015 / 2:36 am

    Live life with no regrets…live in spite of your disease…make your heart sing…do what feels right for you and never look back!
    Wishing you only the best,
    Carole

  7. Cindy Maak October 21, 2015 / 7:32 am

    Wow. You really should write a book. I’d buy it.

  8. Matthew October 21, 2015 / 12:44 pm

    Hi Lisa,

    Do you mind if I ask how you knew or thought you’re reacting to ketotifen in particular given all the other meds you take? Everyone’s different of course, but just curious how you knew which one it was! I can find myself stumped at junctures like this…

    • Lisa Klimas October 21, 2015 / 2:04 pm

      This is a great question. Sometimes it can be really time consuming figuring out what the issue is.

      I got ketotifen refilled last week. The capsules are shorter than usual. I didn’t start taking the new ones until Sunday. Symptoms started then.

      I take ketotifen every morning and at noon. My reaction started about thirty minutes after morning meds. It also started thirty minutes after my afternoon meds, which is only three meds – prednisone, trimethobenzamide and ketotifen. I knew it wasn’t the prednisone and trimethobenzamide because I take them again later in the day and I wasn’t having reactions then.

      I tried dumping the ketotifen into water and drinking it. I reacted but much better than swallowing the capsule. Hoping I can just open the capsules while we try and get some of the capsules in.

      • Matthew October 21, 2015 / 3:27 pm

        Ah I see, thanks. 🙂 I can remember times when changing the type of capsules a med comes in has caught me out. And I’ve been surprised it can make such a difference! The more annoying times are when you can’t find anything as specific that’s changed yet something’s gone out of whack all the same (in the middle of one of these atm)…

  9. Lisa October 21, 2015 / 8:31 pm

    Thank you for being so honest and open and I am hopeful your trip to Hong Kong is amazing and drama free!

  10. Karen October 21, 2015 / 10:30 pm

    Is the eye twitching a masto thing? I have it. Alot. Btw, enjoy your trip. Virtual Hugs to help deal with your loss, struggles and obstacles along the. Way.

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