Future realities

I love data. I love scores, charts, trends. I collect information, categorize things, make lists. I love data because it’s not malleable, not mutable based upon your current reality. Data does not lie.

I keep track of my life in a little red binder. I record various data in color coded ink. When I woke up and what symptoms I had when I did. What time I took my medication. What I ate. What I thought about. How much pain medication I needed, if I had IV meds, my IV fluid volume. I draw my yoga routines in soft violet curves, map the routes I took to walk the dogs. And at the very bottom of each page, a hand drawn table, double lines under the header, my most important tool in tracking my health.

There are three columns: symptoms, score, notes. I might skimp on other details (on terrible days, I sometimes just write NOOOOOOOOOOOOOOOOO across the page), but I fill out this table every night. I have been doing it for almost three years. Every night in bed, I score my symptoms: nausea, vomiting, GI motility, flushing, hives, headache, GI pain, bone pain, other pain, energy level, sleep. I record how bad they were out of 10. Indelible. Immutable.

Last month, my doctor called me to discuss options for dealing with my ongoing GI issues. They all sounded really stupid. I told him they were sounded stupid. But I’m out of options that don’t sound stupid so I tried the one that seemed least likely to harm me while probably doing nothing. It has helped a shocking amount. I sleep at night. I’m not exhausted all day. I don’t have to brush vomit acid out of my mouth several times a day. I can do yoga regularly. I can cook. It makes my bone pain worse for some reason, but frankly, I don’t care. The global improvement in my symptom profile is that dramatic.

I started a liquid/ soft solid diet in October. I mostly eat pureed vegetables and protein drinks. I drink a lot of bone broth. It is boring and annoying and sometimes upsetting, but it is definitely working. I have been adjusting medication for months, trying to find the balance between coverage and not sleeping for 20 hours at a time. With the gut rest afforded by my easily digestible diet and the addition of this new medication, I seem to have found a working combination.

I saw my doctor on Tuesday. For once, we shared good news. My biopsies were mostly clean. My bloodwork is better. I will need surgery to have the (has no function, hurts and bleeds all the time) end of my GI tract removed, but this is not surprising. I am doing better. A lot better.

The thing about reality is that whatever one you are living right now feels like it has been your reality forever. When you have a bad month, you can’t remember the last time you felt good. When you feel hopeless, you can’t remember life without smothering darkness. Your current experience colors all your other experiences. It makes your present situation seem bigger and heavier and more permanent.

A year ago, I was living the darkest, coldest part of my life. Every day was a struggle. Every minute was a struggle. This was a year of telling myself every minute, “You can do this. You can do this.” Even when I was sure I couldn’t. Even when I felt hollow, my very life force long since sapped away.

But now I can line up the pages of my binder and flip through them. Like an old cartoon, a story appears: the numbers in my tables go down, and I get better. Data doesn’t lie.

I don’t know if this will last. I don’t know how hard it will be to recover from surgery. But it doesn’t matter. Right now I am packing to go to Colorado this week and going to Disney for New Year’s Eve and studying for exams and making big plans that I hope to share soon.

A year ago, I could never have believed that I would feel like this now. I am healing my body. I am recovering my life.

There is no limit to the things we can do. Reality is temporary. There is always a future. There is always the possibility of new realities.

5 Responses

  1. Shirley December 7, 2014 / 6:19 am

    Lisa thank you for this post. I am filing it in a folder that I will give Tessa when she is older and able to understand it. I think it will give her inspiration and hope like it gave me.

  2. Sean-Michael December 7, 2014 / 6:34 am


    I just woke from a nightmare and really your post is so uplifting. Thank you!

  3. christy duncan December 7, 2014 / 12:14 pm

    Thank you, Lisa. For sharing so much of yourself. You really are making a difference in the lives of others! I have had a hard month. So hard that I haven’t been to see my Dad in the nursing home, and haven’t visited my Papaw (whose fighting cancer) like I should. My Papaw understands, my Dad don’t. I have been surviving this month. Thank you for reminding me that it’s okay ifcu all I do is survive. Thanks even more for reminding me that I am not alone in my feelings. The current situation DOES color all other situations. But I hope there’s a light a head, a break in symptoms. Thank you!

  4. Kathy January 1, 2015 / 7:52 pm

    Hi Lisa! The liquid diet rang a bell. I belong to several Facebook groups (Mastocytosis Society, Histamine Intolerance, Idiopathic Anaphylaxis, etc), and somebody on one of them mentioned chewing your food until it was essentially liquid. She said that had helped more than anything else. interesting. I appreciate your blog: I just found it, and have been reading the archives. Have you mentioned anything on exercise? My husband is an avid cyclist, and really wants me to join him. But he is hard-core: he is all about getting the heart rate up, going fast, working hard. I have been tentatively identified with MCAD, possible eosinophil involvment. I’ve had to use the epi 4 times since Thanksgiving, which is a LOT for me. I walk with a friend several times a week for exercise, but am nervous about doing much more, especially if it involves “getting my heart rate up”. Am I being too nervous?

    • Lisa Klimas January 3, 2015 / 2:14 am

      Be super careful with exercise. There are people who are able to exercise vigorously with premedication but it is not something to be taken lightly. I cannot do any type of extending cardio exercise. I do yoga and walk. Exercise is naturally irritating to mast cells, even to those without mast cell disease. I would discuss this with your doctor and would start very slow with premedication if it were me.

      Something else to consider is that the amount of circulating histamine is important to whether or not exercise causes a reaction in people who experience exercise anaphylaxis. So avoiding high histamine foods may make exercise more likely to be a success.

      I think that’s interesting about the chewing, because I have found that chewing contributes to reactions for me. I’m not sure if chewing is what signals histamine release in the gut for digestion, but it makes things worse for me.

      I’m sorry to hear about your epi streak, that sounds miserable. Hope you get a win soon!

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