The only constant

Summer is over.  Maybe astronomically speaking it’s not, but it is.  When you close your eyes on August 31, warm windy days and bathing suits and beach towels and eating outside are all packed away by summer faeries and pushed to the back of the closet.  When you open your eyes on September 1, it is fall.

I had an amazing summer.  I could never have imagined that I would have a summer like this again.  I went swimming in the ocean and went to a water park and got sunburnt and walked around in the sunshine. I worked a lot and took the train and ate solid food and exercised.  I still have mast cell disease and it will never go away and no, my GI tract does not work well.  But I feel better in a lot of ways.  I feel better than I thought I would ever feel again.

Last week was a difficult week for me.  I have been pushing it the last few weeks, trying to do more than I probably should.  I started feeling gross again, burny hot skin, really bad nausea, more GI trouble than usual.  I started needing to sleep a lot longer.  It was so defeating.

I crawled into bed one day and lay awake, too tired to sleep, reliving the last several months.  I was scared.  I was scared that this was over.  I was scared that these three months were all I was going to get.  I was scared because it felt like I was finally living again and losing that would be too painful.  Because I was finally entertaining the thought that I could go back to school and travel and have fun without risking ending up in the hospital.

Last Friday, I realized I had a fever.  I was sick because I had a cold or something.  It hadn’t even crossed my mind that it was anything other than mast cell disease.  I slept most of this weekend and am getting better.

It only took a few days for my dreams to turn from school and travelling back to a stable accommodating job with good insurance.  You know.  My fall back dream.  The dream that I will retain the means to treat my myriad health issues and live independently in a clean, safe place.  That dream.  It sounds silly and narrow to people who have never been sick but let me tell you, it’s not silly to me.  Even when I am feeling better, even when I think I could do things I put aside long ago, even when I am embarrassed to admit it, this is my dream.  This is the dream that needs to come true for any other dream to be realized.

I like my life.  I have a great job.  I have an apartment I can afford in a convenient location.  I have a great support system.  I receive excellent health care.  I can walk my dogs at night.  I can pay my bills.  I am lucky.  I am so lucky.  And it feels wrong to risk losing all of these things to pursue another dream that could prevent me from getting the care I need.

So I push these thoughts aside and feel grateful for all that I have.  I focus on living the life I have now and try not to rock the boat.  I don’t make any changes.

There is this idea that by doing nothing, we can preserve our lives just the way they are.  That if we don’t change, we are guaranteeing the future provided by steadily travelling this same road.

It doesn’t work that way.  It never did.  Everything changes.  The only constant is you.

Yesterday I found out about some changes at work that will directly affect me and how I continue to do my job.  Maybe not in a bad way.  I went back to my desk and cried for a few minutes because I’m a crier and I get very attached to people.  Then I got up and got lunch and went back to work.  I was sad and anxious but also a little relieved and excited.

I don’t know the name of this feeling.  But I do know that I could choose to stay here in my little apartment with my job that I love close to my family and friends and doctors.  I could make that choice and it could all change anyway.

And I could make the choice to give all of this up and I could find myself without healthcare or money or a home.  Or I could find that I give it all up and succeed.

It feels like the stakes keep getting higher and higher.   But that doesn’t mean I shouldn’t try.

7 Responses

  1. Jenn September 1, 2015 / 8:55 pm

    Oh, Lisa – Everything about this post is awesome! It’s amazing to read something that describes my life almost exactly, yet wasn’t written by me. So well said. Glad you had a good summer.

  2. Sean-Michael September 1, 2015 / 8:59 pm

    Well put as usual! I know many of those feelings. I hope you reach all your dreams

  3. Debi September 2, 2015 / 1:24 am

    Thank you for writing this. As a parent of a mcas child it’s hard to think ahead as I worry so
    Much but you are such an inspiration and give me such hope for her future x

  4. Pam September 2, 2015 / 6:57 am

    Lisa, thank you for once again sharing your life. You shared multiple scenarios of feelings, health, life and dreams that relate to so many of us, the ups and downs of a life with chronic illness. I think it is important to have dreams, all kind of dreams, and being thankful for the most basic dream. ❤️

  5. Cynthia September 15, 2015 / 6:04 pm

    Thank you so much for all your hard investigative work into this horrible disease. I am in the process of being tested myself, but it looks very like it that I have MCAS to some degree at the very least. I also suffer from Dercum’s Disease, Lipoedema, SLE-Lupus, Panhypo-Pituitary Defiency, Fibro, CFS, etc etc etc…… The list could go on forever, but I have to get my brain around the fact that many of these problems are probably caused by MCAS. I will continue to follow your blog, and again, thank you!

  6. ThePansyBastard™ September 16, 2015 / 3:44 pm

    Lisa,

    I’ve read numerous blog entries but I don’t always leave comments. I thought I had better at some point, so I can thank you for all that you have done with this blog, not only opening up about yourself, but also your insight into this awful, horrible, EVIL disease!

    I was officially diagnosed with Systemic Mast Cell Disease/Mast Cell Activation Disorder in July of this year, but heavens what I’ve gone through before the diagnosis.

    I am shocked that you can be out in the sun! Shocked and ENVIOUS! One of my largest triggers is sunlight. And I’m a huge flower lover (my name might give that away a bit). I have to wear the most ridiculous things – SPF treated clothing – long sleeve shirts, scarves, a sunhat (I’m NOT a hat person AT ALL) and gloves! Even then, about 20 minutes of sun does me in. Heat is also a HUGE trigger for me. I’m so torn between my desire to be outside and the unending skin-on-fire feeling I have (STILL working on finding the right fix for that).

    I’m still searching for that right mix so I can feel well without having it to be around 60° in my house with practically NO humidity.

    Thanks again!

    Matt

    • Lisa Klimas September 16, 2015 / 7:14 pm

      Hi, Matt! It takes a while to get things managed. Last summer, I couldn’t go outside during the day without severe reactions. Heat is a big trigger, too. We have made a lot of changes this year, with meds, surgery and exercise. Hang in there!

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