It is hard for you to be really, really happy after being burned? Or is it just me?

Just want to write down some thoughts that have been on my mind lately…

After so many years of fighting ulcerative colitis, surgery complications, and a whole host of other things related to my health, it is so hard for me to be outwardly happy. For example, I think posting a status on facebook about how well you’re doing or how amazing your test results came back is sort of jinxing yourself. (Again, that is my own opinion based on my superstitious nature so I am certainly not judging!)

For years, my mentality in life has been to just kind of go about your business. Be glad when things are going in the right direction but “stay even” as my dad always told me. Not too high, not too low was how we had to try to live.

I don’t know if I am capable of truly getting full blown excited down to my very core about something because I fear there will always be a small part of me that thinks something will go wrong. It is hard for me to wrap my head around plans going positively and things not getting sidelined by unexpected events. It isn’t intentional and I don’t want to feel this way.  But I do and I do hope I am wrong.

I don’t like this skeptical side of me. Mainly because I never imagined I would be the kind of person who felt and thought these things.

I know (or hope) as I am able to spend more time making plans that I can keep, and doing things that are of my own choosing (as opposed to ER visits, surgeries and hospital admissions), I will start to feel like I am actually in control of my life and my own destiny. Or at least most of it, since I do acknowledge my health can take on a mind of its own sometimes. Knock that it won’t!

You probably think I am a superstitious nut right about now, right? ; ) Well, I am to a large degree because that provided  someway for me to feel like I was in control. As though I had a say in the outcome of something; It was contingent on whether or not I knocked or jinxed it prior. I am a realistic person and do know deep down that some of these things are just mind games. But since I gave up on religion after years and years of things going awry,  I clung to superstition as the  “power greater than me” that we all need so badly.

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  • http://aguywithcrohns.com A Guy With Crohn’s

    I have learned that life will throw at us whatever it wants to. No matter what we do, things will happen. So why worry about it. Don’t know if you ever saw the movie Risky Business. In it, a character says the line “Sometimes you have to say WTF. If you can’t say it, you can’t do it”. Well, I constantly say it now. Basically…forget about what can happen, and just live your life.

    I know…it is hard. It isn’t easy to just change your ways and your thoughts. I understand that. But just know…you have one life. You need to enjoy it. I know you. Overall I think you are doing 1000% better then you used to be. Enjoy it. I know you are happy with so much. Enjoy it.

    Don’t let life throw you the curve ball anymore. Instead, look at life in the eyes, laugh at it, and have fun. Most of all, Enjoy It.

    Did I mention, you should enjoy it. :)

  • http://arsalanaslam60.com arsalanaslam60

    Reblogged this on arsalanaslam60.

  • http://advocateofliberty.wordpress.com bastiat1776

    Marisa,

    First of all I felt like I was reading a description about how I normally feel.

    I saw in your tags you listed PTSD for this post. Is that something you’ve done a lot of research on? I’ve not found much good research on the link between chronic disease/chronic pain, multiple surgeries and PTSD. From what I’ve read the trauma, pain and helplessness felt during these types of w

    • http://advocateofliberty.wordpress.com bastiat1776

      (Continued) with these types of experiences. Thanks again for sharing. Brad

    • http://aguywithcrohns.com A Guy With Crohn’s

      Bastiat….I think it is very possible to have PTSD with a disease. Marisa has gone through so much with UC that there is no doubt in my mind that mentally she suffers. IBD is more than a physical disease. It is very much mental.

      Can I also say, if you felt like you were reading about yourself, then you know just how much a disease can affect you mentally. I think instead of labeling it, we just accept that the person is hurting, and we offer our help. If we all come together and help one another, we would be so much better.

  • Sherri

    Ooops…..You may get that superstitious trait from me…finding lucky penny’s, just at the right time was a sign that all would be ok…it empowered me. I’m rational too…but like you feel whatever works to give you strength when strength is tested grab it. Just keep doing what you’re doing my GF, because you’re amazing….,<3!

  • https://www.facebook.com/sheila.bergquist.3 Sheila Bergquist

    Wow, I thought I was the only one afraid of jinxing things and superstitious in that way! I am exactly the same way, but it’s ok, because whatever we have to make us feel safer is useful. So keep knocking!

    • http://risaroo86.wordpress.com Marisa Lauren

      I’m glad I’m not the only one! My family makes fun of me but we are awesome!;)

  • jen

    Even more difficult than being “happy” after being burned is TRUSTING after being burned. When you put your trust in a doctor, family member or friend and one of the million things that can go wrong from a communication problem/misunderstanding to a missed diagnosis to the inability for a loved one to be in a relationship w/a sick person – and that trust is comprised – it becomes nearly possible to trust as fully, and eventually at all people you know or people you don’t. I’ve only recently realized why the inpredictabililty of life is so much more difficult for those of us w/chronic illness, the type w/no cause & no cure, often no outward signs of pain & other debilitating symptoms – there is SO MUCH UNCERTAINTY & SO LITTLE CONTROL in the disease that we latch on to anything concrete. The normal day to day spontaneity of life and people living it is, most of the time, too much to bear. Have I made any sense?

    • http://risaroo86.wordpress.com Marisa Lauren

      You have made complete and total sense!! I actually just this morning wrote a post about it but made (for now.) trust is such a hugeeeeeee issue!! How can you tell if a dr is suggesting the right thing when there’s 467544 insane side effects to worry about?? Unpredictability of IBD makes you crazy and it’s only those that live it understand it. All I want is control too !