Will you always have to live this way?

I have been asked this more times than I care to recount.  I live very carefully and that along with treatments and avoidance has gotten me to where I am today.  I am not totally well and may never be.  I am better than I was before.

Would I want to be able to do all that I did before?  Absolutely!  I loved having my hair done and my nails painted.  I loved going shopping and to lunch with my daughters and friends.  I loved having nice clothes and eating pizza for dinner if I didn’t want to cook.  I loved going to the casino and gambling and I loved being able to go somewhere that required staying over night.  I loved dining with friends in their homes and being able to eat inside and sit and watch a movie or play a game indoors.

Dr. Rea, my environmental doctor from Dallas, told me once that even if I regained the ability to do everything in my old life I would have to be careful.  I am an exposure (mold, pesticide, chemical) away from returning to where I began.  While I may gain some things from my former life back, I can’t abuse them.

I recently read a post from a friend.  She was on the road to recovery and thought she was totally well.  She began doing things again like coloring her hair and painting her nails.  Suddenly, she was hit with an exposure.  Her body, dealing with the added chemicals from hair color and polish, couldn’t handle the additional load.  Our bodies are like a barrel.  Every exposure to chemicals (hair spray, dry cleaning chemicals, shampoos, fabric softeners), foods we are allergic to, pollens and molds slowly fills the barrel.  When the barrel gets too full and our toxic load is to high for our bodies to rid itself of them, it begins to leak causing our bodies to become ill.

For those of you who are on the road to recovery, I think her post “I made it out of here once” says it all about how careful and vigilant we must be to continue to recover and to hold on to the progress we have made.  For those just beginning this journey, I think her post is a testament to the fact that one can improve.  Visit her blog at:  http://the-labyrinth.com/2012/09/10/i-made-it-out-of-here-once/

I think the answer is both yes and no.  Yes I will need to stay vigilant and no because I may get to do more things than I am doing now in the future.


10 responses to “Will you always have to live this way?

  1. In some ways I’m lucky, with endo I do have a possibility of getting well. The problem is that the cure is pregnancy, and when you’re 22 that’s a big decision and people will judge me for doing it. Plus, it won’t get me my “old life” back, but a new one with an 85% chance of no pain. I suppose it’s very similar to your situation. Life can get better, but to do that we need to make sacrifices and changes…

    Reminds me of some Beauty and the Beast lyrics: “Oh but then, as my life has been altered once, it can change again. Build higher walls around me! Change every lock and key.” We can take it. 🙂

    • I dealt with endo as well but not until I was 48. I actually didn’t know I had it. I was having problems and they discovered I had hemorraghic cysts on my ovaries and an elevated CA-125 suggesting the very real possibility (50% chance) of ovarian cancer. It wasn’t until during the surgery that they discovered Stage IV endometriosis. It was attached everywhere. I am sorry that you are dealing with it at such a young age. Don’t worry about whether or not people judge you. You do what you choose is right for you. I have had people act like I am not as sick as I proclaim or that things couldn’t possibly be that serious and that mold couldn’t have done it. To them I say, “Walk in my shoes!” I enjoy your blog.

    • Yes, scarifies and changes… I adore those lyrics, “Oh but then, as my life has been altered once, it can change again. Build higher walls around me! Change every lock and key.” Yes we can! You are both amazingly strong women, and it’s a pleasure to read your well expressed words. I was feeling down until I read both your blogs this morning. Thank you for the inspiration… for everything. 🙂

  2. Thanks for the link. I like the barrel analogy; I’m going to keep that in the forefront of my mind this time while I recover. It’s so inspiring to read other people’s journeys, and in a selfish way, it stops me feeling so uncomfortable about sharing mine.

  3. Miche

    I am so glad that you are commenting and sharing your journey. I think we are all human and want what we had before. When we think we have it, we go full throttle so to speak. Kind of like on the days when my energy is high I always overdo and then pay for it. There is woman who wrote about explaining the loss of energy. I am trying to get permission to print her story.

  4. What a great post. I like the barrel analogy, its easy to understand. I’m often asked if my son will ever outgrow his allergies. Its always a hard one to answer because we don’t know if he will, but we are very hopeful!

  5. Have you heard of LDA (low dose antigen) for food allergies? It has helped me get some of my foods back.

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