My body is changing. I am tired but do not sleep for twenty hours at a time. Bones and angles emerge as my swelling wanes. I exercise. I eat real food. I sleep at night.

At the same time, I am carefully engineering to encourage these continued changes. I still take a ton of medication. I still need IV fluids every day. I still need IV meds. I still need to manage my pain. I still need to be careful. This nethervoid I currently inhabit might never be mistaken for healthy, but it is healthy for me. It is stable at least, predictable. It is good for me.

Last week was composed of the oppressive, sticky summer days that Boston is known for. Heat, humidity and sunlight form my own personal triad of doom. I got halfway through my short walk between stations and started reacting badly. I went into a Starbucks and promptly threw up while hives appeared on my neck. All of my exposed skin was bright red. I took some Benadryl and drank some cold water and waited for things to calm down. They did. I continued on my way to work.

It is hard for me to gauge how bad I look on any given day, as I was for many years in a persistent reactive state. My only indication is that initial surprise when people look at me, that flash of concern as their eyes widen, a brief moment before they recover. I knew as soon as I got to work that I must look terrible.

We have a cold room at work that is essentially an enormous refrigerator. “Girl, you need to go stand in there,” one of my coworkers said with a supportive nod. So I did. It helped. When I emerged, multiple people told me they were worried I would anaphylax and to please take a cab home. I am so fortunate to work with this group of caring, wonderful people that understand my disease and want me to be safe.

I did end up taking a cab home. I didn’t want to, but I did. It’s hard for me to articulate why I didn’t want to, when I knew it was safer and easier, in a way that doesn’t make me sound crazy. Getting in that cab made me sad in this nebulous but palpable way.

Taking the train to work is a privilege. Going to work, cleaning your house, paying your bills, food shopping, making dinner, eating solids, crunching lettuce as you watch television, being part of the world. These are privileges. These are the things you miss when you are hospitalized or so tired that your whole body feels heavy or riding that knife’s edge of anaphylaxis because your body is fighting you on something you need to do.

All of the days you spend fighting – this is what it is for. You fight for these privileges. You fight to be in the world. These are the things you will miss. All you can ever hope for is to wake each day to a world full of mundane privileges.

Some days I want to take the train even if there is a chance I will get sick. Because there is a chance that I won’t. Once that was impossible. Maybe it will be again. Maybe tomorrow it will be impossible, but not today.

I am still sick. I am still in pain. I still have a poorly functioning GI tract. I still carry two Epipens and a backpack full of meds everywhere I go. I am still nauseous. After all of the effort put forth in the last three months, I did not get cured. I got to walk to work sometimes. I got to eat salad. I got to feel the sunlight on my skin. That’s what I got. And it’s enough, and even more than it’s enough, it’s amazing. All of this is amazing. I am alive this summer and I am alive in the heat and I am alive when I’m too hot and I’m alive in the sun.

You cannot always decide what you do, but you can always decide who you are. I cannot always walk in the summer sun, but I am always a person who wants to.

I choose to live in the world and to enjoy it and be alive. I choose this even when it might hurt me. I choose this even when it might kill me. It is where I want to be.

It is a privilege to participate in this world. It is a privilege to be alive.

8 Responses

  1. melinda August 6, 2015 / 1:22 am

    It’s so true. Every day is a birthday and a gift. And every day things are a privilege. Thank you for sharing

  2. Emmi Dack August 6, 2015 / 2:18 am

    Thank you for such an excellent blog.

    If you can get access, I thought you might be interested in this article.
    Systemic mastocytosis in a patient with Cowden syndrome.
    Tantravahi SK1, Schumacher J, Burt RW, Kelley TW, Deininger MW.
    Am J Hematol. 2014 Dec;89(12):1154. doi: 10.1002/ajh.23815. Epub 2014 Aug 27.

    I am in several FB Cowden’s syndrome/PTEN hamartoma tumour groups, and one or two people have been diagnosed with a MCD. Some others have multiple food/chemical allergies/sensitivities.

    I was ‘officially’ diagnosed with MCS and food sensitivities in 1999 by prof of allergy/immunology – life has been very difficult, especially as some people misunderstand and think the problem is a lifestyle choice.

    Recently have been taking Montelukast and daily antihistamine which have really helped with a problem in one lung. However, getting some side effects which are not pleasant.

    Info about CS/PHTS on if you’d like to know more.

    • Lisa Klimas August 6, 2015 / 4:19 pm

      I have read that paper. I find the whole PTEN/PI3K pathway really interesting.

      Mast cell activation can occur secondary to neoplastic diseases of pretty much any kind, including tumors. Some doctors actually won’t diagnose MCAS in these patients because they feel mast cell activation is an inherent part of the disease. I would expect Cowden’s patients to have at least some mast cell activation.

      It is hard sometimes to strike that fine balance between symptom management and side effects. I hope you are able to find a working regimen.

      That’s for the info!

  3. Amy Jansen August 6, 2015 / 3:43 pm

    I never been as sick as you and I wonder how did all started and if you had the privilege to ask such question when being stable seems more suitable. Honestly I wish you gain health as you have a wonderful mind furthermore I admire how you keep up with a block and an on line group. Deep inside I wish I could help you.


    • Lisa Klimas August 6, 2015 / 4:16 pm

      Sickness is relative. I have more severe lower GI issues but honestly I consider myself pretty lucky. I am still able to function with some independence, I can still work. Not everyone has that. Thanks for your kind words!

  4. Heather C. August 30, 2015 / 7:58 am

    Lisa, your thoughrs really hit home with me. My husband, yet to be officially diagnosed, suffered his first upper airway closure over a year ago. His angioedema is slow, so we watched and waited several hours, hoping the swelling wouldn’t go that far, that it wouldn’t be another fun night at the ER talking in circles with doctors. What we didn’t realize was that the swelling we could see in behind his tonsils was not the whole picture. He suffered a probable hypoxic brain injury which led to parkinsonism 5 days later. Then they tried to tell us the stress of his airway closing was too much and his brain “broke” to protect him! Conversion disorder has haunted us and prevented further investigation until now.
    He was a hard working self sufficient man who lost his ability to talk right, to drive, to walk well, to think clearly and make simple decisions day to day. I went from working part time to full time, doing all the shopping and driving and going and doing and this and that and that and that and that! I would get angry and feel sorry for myself, but I stopped. I started reminding myself of how I should be glad to do it simply because I could, because I have the ability to do such things. My husband lost that.. came home from work one day, never to return to a job, drive himself, pick up his son from school or run to the store. So yes, enjoy it and be thankful because you can do it, whatever that “it” is, because you never know what tomorrow will bring.

  5. Richard Nolan September 18, 2015 / 10:04 am

    Morning and Shalom Young Lady, thank you for sharing hope with us all. I started freckling back around 1999 and didn’t go to V.A. Treatment until 2010 where I was diagnosed with SM. A question that I have had since then is , Sight/Eyes, do you know of a report or written a paper on Systemic Mastocytosis pursuing to vision? Another question if I may, are you knowledgeable about Bill Downs, (PHDS, scientists, ??? 50 cent words)? Enjoy the time and be Blessed. Shalom

  6. Jennifer K September 20, 2015 / 6:08 pm

    Thank you for writing this blog and sharing your experiences. I can relate to so much of what you say, and your words provide comfort and hope because they show me that it’s possible to make progress and that I am not alone.

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