Independence Day

I live my life as a series of wagers. A lot of these wagers involve my health. I bet that I can fly if I take enough steroids. I bet that I will get better if I get an ostomy. I bet that I will be more stable if I use IV hydration. I bet that taking this med or that will make me less tired. Sometimes I win. Sometimes I don’t.

The last 18 months of my life have all been one large scale bet. It has been many months of moving the pieces around and trying to shove them into place. It has been emotional and stressful and scary.

I slept through the four weeks following my surgery. I did some other things too, but mostly I slept. One day while I was resting in bed, it occurred to me that all of the strength and stamina I had lost was perhaps for the best. There are few opportunities to reset your body and this was one of them. I wasn’t reacting because I was heavily medicating and resting most of the time. I realized that this might be an opportunity to rebuild my body in a calculated way.

Once I was cleared by my surgeon to exercise, I started an exercise program designed for POTS patients. It was pretty detailed (I’ll do a separate post about this) but involved cardio exercise 3-4 days a week. I haven’t been able to do cardio in years. But I figured it was worth a shot.

The first two weeks were brutally hard. Then it got easier. I am now on the sixth week of a twelve week program. For the first time in many years, I can do cardio (with premedication in a controlled environment) without having a reaction.

I went back to work last week. I took the train to and from work on Monday, Wednesday and Thursday, which also involves about a mile and a half of walking each day. It was pouring torrentially on Wednesday and hot as hell on Thursday. I was exhausted when I got home but I managed to get through each day without napping. I slept every night last week. Getting myself to and from work is a level of independence I have not achieved in a year.

I very rarely drive anymore because I can’t use some of my medications if I need to drive and I have been so reactive that that might have been dangerous. But I made a huge wager on Saturday: I drove myself an hour away to New Hampshire to celebrate the Fourth of July with my friends and nieces. I stayed overnight and went swimming today, deaccessing and reaccessing my port. I drove myself home after being in cold water and direct sunlight for over an hour, stopping at Whole Foods and doing my grocery shopping on the way. I cleaned my apartment, did laundry, made lunch for tomorrow, ironed my work clothes, and watched Shark Week. I did all these things without any help.

The Fourth of July is Independence Day in the US. As I watched the fireworks, it felt like I was celebrating my own personal Day of Independence. I don’t know how long this will last.  But I got this one great week and this one Fourth of July.  And maybe I’ll get more.

10 Responses

  1. Veronica Hart July 5, 2015 / 11:58 pm

    You go girl! I’m sure that you try all of these things and take all of these ‘risks’ for you but it sure is kind that you share it with the rest of us. Success or failure (though we all pull for you to be successful), it is remarkably motivating for the rest of us to see you try and to hear your thought process. It is thrilling to hear that you succeed. Maybe next week will be my week….and yours too.

  2. Suzanne Prentice Alfeld July 6, 2015 / 7:07 am

    Independence Day is a hit and miss celebration, at least with mastocytosis. You’ve worded it perfectly. All I might add is on the days the fireworks are high in the sky and beautiful, etch the beautiful times in your mind so that on the hard days, the beautiful days are right in the foreground. Bless you Lisa.

  3. Mark Beckwith July 6, 2015 / 7:32 am

    Congratulations, Lisa. Surely I will not be the last person who, upon hearing or reading about your weekend will say, “Hey, don’t overdo it now.” Sorry, I sound like your dad. I appreciate that you take the risks you do, and how intelligent you are being about it. And intentional. And methodical. I will be interested to read your post about the POTS regimen.

    Thanks for all you do.

    • Lisa Klimas July 6, 2015 / 11:55 am

      Thanks, Mark! It’s okay, I don’t think there’s anything wrong with wanting someone to be careful. I appreciate the concern.

  4. brenda July 6, 2015 / 12:17 pm

    HOORAY!!!

  5. Yvonne July 6, 2015 / 10:33 pm

    Fantastic. I hope you continue to improve and do well. I have a tip. I have been eating baby Swiss chard, lettuce and kale for lunch and supper an I feel great. I highly recommend trying some greens in your diet if you can tolerate them. I also use a bit of miracle whip (olive oil variety) salad dressing. I cut the lettuce very finely and chew carefully. I have had few reactions and want to share the news!

    All the best,

    Yvonne

    • Lisa Klimas July 7, 2015 / 11:32 am

      That’s great news! I have been eating more greens actually. Things that stimulate the GI tract, like greens, caused me a lot of grief before the surgery. I am adding them back in in small amounts. So far I am having two small salads a week. Exciting! I’m so glad that you’re having some success.

  6. Amy Collins July 8, 2015 / 10:58 pm

    I read all your post which I relate too. I was diagnosed with systemic MCAS in August 2012. In April 2014 my world fell apart when I realized my doctor was moving to Minnesota and I live in SC. The doctors in SC have no clue of my disorder in SC but just went to Duke in NC who explained that there is 3 kinds of mast cell disorders 1 mast cells are prolifiric, 2nd one mast cell is prolific, 3rd mast cell in cancerous; all had abnormal Tryptase levels. Since being treated for MCAS for almost 2 years, I’ve had several doctors tell me MCAS is too controversial and basically I don’t have it. The doctor at Duke said I had a disorder that doesn’t have name yet. I’m very sentive to environemetal and food issues. I also live with an enourmous amount of pain that Duke contributes to trauma to my nerve endings. So, I want my life back, WTF is your conclusion. Duke suggested taking Lyrica or similar drugs. My problem is, this doesn’t cure the sentivities like fainting, shortness of breath, malabsorption, diarrhea which has improved drastically with Cromolyn treatment, throat issues, etc. In other words WTF?I want my life back Lisa Klimas. Am I barking up the wrong tree?

    • Lisa Klimas July 10, 2015 / 11:08 pm

      MCAS does not yet have a diagnosis code or WHO criteria. This is why so many patients have difficulty getting care. It is very frustrating. There are several different sets of criteria so I think a lot of doctors don’t know what to believe.

      Are you not able to continue cromolyn treatment? Lyrica or Neurontin are not unusual in mast cell patients. I actually started Neurontin recently and it is helping a lot.

      A lot of Afrin’s patients are in this same boat. Is it possible to see him in Minnesota? Do you have a local doctor to work with?

  7. Carrie Denham July 4, 2016 / 11:09 pm

    Lisa– that is wonderful to hear. So happy for you. Hope improvements & stamina will continue to build. I have experienced very similar in the past year. I enjoyed reading it.

Comments are closed.