maintaining a calm in a sea of anxiety or 6 things to not take for granted

As I’ve mentioned before I have recently been diagnosed with ulcerative colitis. Google at your own risk, trust me. I was diagnosed while pregnant with Baby. It was a scary time but we survived it and couldn’t be more grateful. Unfortunately, I had another what they (the doctors) call “flare” for a number of weeks, from the end of November until about Christmas time, until the steroids kicked in a settled things down. Again, another scary time but again, I survived and have learned some valuable lessons about taking things for granted.

Stress is a major factor with this disease so it is incredibly important that I maintain a certain calmness in my life. This is no simple feat, it takes a lot of hard work and balance. Babe has been incredibly supportive with this need and Baby is just perfect. They both work with me to keep my anxiety down and make sure that life is easy. I do yoga at least once a week, I have my sunday nights, and enough sleep to keep cool. However, even with all of the efforts we’ve made there are no guarantees.

The steroids have run their course and the medication that I’ve been taking to keep things cool doesn’t seem to be working. I am about to enter another ‘flare’. At my last doctors appointment, last week, I was told that if I flared again there was only one more medication to try before surgery. It is supposed to be a wonder drug. It will also cost over $15,000 a year (thank g*d for benefit plans for the coverage), so I really hope that it works as it looks like it’s the only option that I’m willing to try. Anyway, in an effort to accept my reality I have put together a short list of things that I’ve learned to not take for granted. I wanted to have 10 things on this list, but I couldn’t come up with anything else after 6 – Baby woke up from her nap. 🙂

Here is my list:

1. Enjoy every meal consumed, you never know when you won’t be able to eat and value every liquid you drink, the feeling of never-ending thirst is horrible.
2. LOVE every minute you spend with Baby & Babe doing anything & everything, time in the loo isn’t as much fun.
3. Breathe, you will get through this.
4. Allow yourself to get out of the house, you get stir crazy when you can’t leave your own home.
5. Spend as much time enjoying the company of others, you will miss people when you’re stuck at home.
6. Laugh, life is still funny and this too can be laughed at.

This is one way to lose the baby weight!

I have a great life, please don’t read this thinking “poor her”. I have a fantastic family, my parents are great, my siblings are pretty decent. There really isn’t much that is worth complaining about, but I do anyway. Babe says that he hopes my blogging isn’t me just bitching about life, friends, health, and he hopes that I don’t make people depressed. I hope so too! I’m still getting the hang of this blogging thing and learning how to filter. Mind you not filtering is way more fun!

If you’re not thinking “poor her” than you’ve clearly taken my advice at the beginning and didn’t Google UC. Thank you for listening to me, not very many people do!

What gets you through stressful times? Would you change anything to my list of 6 things? What am I forgetting?

This entry was posted in February 2013 and tagged , , , , , , , , , . Bookmark the permalink.

16 Responses to maintaining a calm in a sea of anxiety or 6 things to not take for granted

  1. Sounds like my daughter, recently diagnosed with UC, is about to try the same wonder drug as you. Fingers crossed for you both.

    • Thank you!
      My best to your daughter – when does she start this *wonder drug*? I’m sorry to hear that she has UC, it’s a terrible thing to deal with, my heart goes out to her (and to you, I can only imagine how you must feel as a parent).

      • It’s without a doubt one of the very worst things that has happened in my life and yep I’m not the one dealing with it physically 😦
        She has another colonoscopy Friday next week and after that we’ll find out if she can try this drug…so I guess she’d start the week after that. What about you?

      • It will get easier. It has to!! What type of UC does she have? They’ve told me that I have pancolitis, which is the entire colon from start to finish and that it needs to be removed. I am holding off as I would like to have more children. Ugh. Such pressure!!

        I am meeting with another GI specialist in a couple weeks and with get a 2nd opinion regarding treatment. There aren’t very many options for me, but I would assume that I will be on this ‘wonder drug’ by Spring (March/April/May).

        How is your daughter dealing with all of this??

      • She also has pancolitis…same discussion re removal 😦

        Do you mean you can’t have children once the bowel is removed?

        Mostly she’s dealing amazingly well, better than me! But of course she has moments…and get anxious in the middle of the night. She’s going to see a counsellor week after next.

      • I hope the counsellor helps! I’ve definitely wondered if it would be a smart thing for me to do – I have recently figured out that when my stress levels increase my colitis reacts. Has your daughter figured out what the triggers are?

        Pancolitis…how sad for her at her young age…I’m so sorry!

        I was told that having children would be more of a challenge if I had it removed and had the j-pouch. It’s still possible to have children, but may require more assistance than the old fashioned way 😉

      • Yes she’s realised that stress is a trigger. And I guess different foods affect different people – her doctor says ‘eat everything’ but she’s eating very little variety at the moment..

        I see about the j-pouch..fingers crossed for you x

      • I’m meeting with another specialist on the 19th to get a second opinion on the treatment options. I’m currently on a pill/drug right now that makes me nervous as it’s kind of an archaic drug and has a lot of risks. I’m not wishing for this new drug faster, but just want to make sure that what my current GI is saying is right. It never hurts to get a second opinion! And I may even get more…

        I will agree with you that this is the worst thing to happen to someone – with every flare I always wonder how I’m going to survive it! However, we survive and have normal days to be thankful for and appreciate!

        Keep me posted on your daughters progress, I’m thinking of her and wishing you both some peace.

      • This is her first ever flare – haven’t gotten to remission yet. I wonder if she’s on the archaic drug you’re on.. Just in a sort of holding pattern right now until she can start Infliximab (Remicade).

        She has, we’re told (and from my net research) the top GI dr in our area so I have to trust, believe, follow what she says…when we’re in the room with her it’s easy, when we leave and read/hear about the variety of ways people are being treated it’s damn confusing..

        Will keep you posted – and you too please? Wishing you joy in your days..

      • Information can be overwhelming! Trust that the specialist your daughter has is doing the right thing for her. My GI is pro-surgery so he’s pushing removal, and I’m resisting, hence my interest in finding a 2nd opinion on my treatment plan.

        Please continue to keep me in the loop, and I will let you know how things work out for me!

        May you find some peace, as well as your daughter…

      • I spoke with her IBD nurse this week who assures me daughter’s GI dr is the bees knees around here and IBD is her focus. I think most if not all her patients have either crohns or uc. So, yes I will trust…

        She is not necessarily pro-surgery, will try everything she can first…but she is definitely NOT pro-steroids I know that!

      • That’s really great! Keep up the fight and keep me posted!! 🙂

  2. Your attitude is amazing! Keep it up! You can beat this!

  3. Pingback: Oh Brother! | my life up here…

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