Reading Sophie’s update, I realized that our medical journeys are very similar. Sure, we’re about five years apart. Sure, we live in different countries. There are nitpicky differences. But the bottom line is that there are a lot of similarities, and I’m pretty sure we can learn a lot from each other.

See for yourself and tell me what you think:

I’m in the same place as Sophie with regard to CBT where I’ve already done everything that you’re supposed to do with regard to chronic pain management. Like her, I’ve been to two sessions and have been really frustrated with the lack of progress that’s being made.

I joke with my doctors a lot about a “magic wand” cure. What I tell people is that no one wants a magic wand cure as much as I do. And given how much certain doctors are invested in my case, if they stumble across one, they will exercise it. And if the cure comes out of the sky, we will very quickly switch gears and move in that direction. However, we’re focused now on coping with the existing symptoms and living with the reality that I’ll probably be living with this condition for the rest of my life and even the possibility that the condition itself is cumulative.

I was just thinking today that I need to call my gastroenterologist Dr. Leo and discuss the issue that I have about eating. The thought of having an eating disorder is really scary to me (as if I haven’t already jumped the hurdles of being labeled with a ton of other things!) but if Sophie can do it, I suppose I can do it too!! 🙂 I know that I shouldn’t be suffering from malnutrition on top of everything else!

The future is really scary. Especially if you’re in school. Especially if doing everything right doesn’t lead anywhere. Especially if everyone around you doesn’t have to deal with ANY of this at all.

Two things have helped me through all of this:
1) Focusing a little bit on the present. I do know that I have today and this moment. So I want to make this moment count. Maybe, at some point, they’ll all add up. But if nothing else, I won’t reach the end of my life still waiting for my life to begin.

2) Friends. It helps a lot to have other people to lean on. Friendly faces count as well. Somehow having friends can get you through another day. Making friends with health care providers helps a lot as well. It makes me feel less vulnerable. Maybe they’ll slay the dragon if he comes out from under the exam table. Or the X-ray machine. The receptionist will definitely not add to the pile of stress I already carry.

And there are the friends who drop everything to spend the night with you when you’re really depressed. The friends who will call you to make sure you’re okay because even though you said you were, they thought that you might need someone to talk to. The friends who pray for you regardless of what has happened; you’re their friend, you need prayer — it’s that simple, no judgment. And the online friends who read your blog posts and instead of rolling their eyes at another one of your ludicrous dramas, laugh with you, cry with you, and press on together with you… because that’s what friends do.

So, there it is. A little bit about my life. A little bit about what I’m thinking about these days. A little bit about why I write about the things I write about. (Ever wonder why friends & medical folks are center stage? Now you know.)

Any suggestions from the readers? Anything you’ve always wanted to know (or are puzzled that there are TWO people in the world with the same wacky combination of life dramas)?



5 thoughts on “A Response to an Update

  1. I think the whole “eating disorder” thing is a huge thing to face and sort out; I know so many girls (and probably guys) who also don’t necessarily have one of the big three, but who definitely struggle with eating and body image. To be honest, I do too; it’s a major problem for our generation. We’ve been fed so many lies about how we are supposed to look and what our worth is based on, of course we struggle! (Ahh, if only I had been around in the 50s, I have the perfect body type for that…)
    So yeah, if you need help and support – go for it! Behind you all the way 🙂

    1. Lydia,
      Thanks so much!! It means so much to have extra support.
      I think my problem is way less about body image and way more about never being hungry & about all food making me feel nauseous, etc. I’ve taken “if in doubt, go without” to several new levels of insanity. At this point, I need someone to help me figure out if it’s a psychological thing or if it’s a digestive health thing or if it’s a my-body-forgot-what-to-do-with-food thing or some other thing. I see a conversation with Dr. Leo looming in my future. It’s a good thing that he’s nice!!

      1. Yeah, definitely then! I know of some other folk with ME who have that problem – the whole, “I feel so sick when I eat I don’t want to actually eat” thing. I guess I’m lucky in that my nausea is either from a specific food, or because I haven’t eaten (although I guess that could cause issues the other way!)

  2. I can completely understand your fears about being labeled with yet another condition, it can sometimes start to feel like they define you but it’s important to stay away from this sort of thinking. My consultant always says that you can actually make things worse by really starting to obsess about a particular condition – you can even start to experience other symptoms you didn’t have before.

    Also, I love what you said about living in the now, it’s definitely important and yet I often forget to do it! I’m always thinking about what comes next, about what I will do (if) when I’m a bit better and it’s not always a good way to live life. Also I definitely agree that friends are a huge help, they can really help you through the particularly tough patches. My boyfriend has been wonderful about it all and I would have struggled all the more without his support!

    I really hope that you can get this area of your life sorted and that your doctors are understanding. I’m sure that with your positivity and your determination to have a life will help you through it 🙂

    1. Thanks Sophie. You’re really sweet.
      Dr. Leo says that I should take one thing at a time. In other words, I should walk through the journey of grief with regard to family & Uncle Eddie and also should try the new medication Dr. Samuel prescribed which is pending insurance approval before I think about appetite and anorexia. It makes sense. Plus, it matches what your consultant said!!
      I hope and pray that you are able to get the help you need and the strength to persevere. Let’s stay in touch. I can’t wait to see where you go.


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