Monday, June 27, 2016

State of the Farmer Address - part two

You've probably noticed that it has been kind of dull around here this year.  While everything else has been chugging along - the donkeys getting fat, birds, bees, fish - there has been one seriously weak link.

That would be me.

A few years ago, after a lifetime of odd health issues, being diagnosed with several autoimmune diseases and dozens of different doctors (all of whom were utterly useless), I finally successfully badgered a doctor into ordering a GI scope.  She actually patted my hand and said, "there, there, we'll order it if it will make you feel better", followed by an eye roll that nearly made her fall off her little stool.

(There is still a part of me that wishes I had knocked that woman right off her little stool).

What the biopsy showed was that I also have Celiac Disease and since I was 41 years old by the time this happened, the damage to my GI tract was very extensive. I went gluten free right away and felt better for a while.  The past year though....not so much.

The thing about autoimmune diseases is that once the immune system gets fired up, it is difficult to shut off.  This is generally a good thing as it is what keeps us all healthy.  However, when the immune system gets all geared up and attacks its own body, it stops being such a good thing.  One of the things that I have had to learn the hard way is that the Celiac immune response often gets worse before it gets better.

After more badgering, I had another GI scope a few weeks ago and found that in 4 years, there has been no improvement.  There are only a couple of possibilities as to why this is.  The first is that, despite my obsessive efforts at being gluten free, I am still getting exposed to gluten.  I am so hyper sensitive that it takes only microscopic amounts to make me sick for months.  The other possibility is that my immune system is so out of control that the next step is chemotherapy to get it to calm down.
Time for drastic measures.

After more research, I came up with three possible sources of continued gluten poisoning:

  1. Inadvertent poisoning by friends when we get together for dinners.  Solution:  I now eat ONLY whole foods that I have purchased and prepared myself.  This includes eliminating all grains and all dairy, which I am also reacting to.  The irony of this is that my friends all LOVE to cook and I HATE to cook.  Life can be so unfair.
  2. Tea bags.  Yep, goddammedmotherf***ing TEA BAGS.  Some of them are glued together with gluten.  (I confess to having a slight major meltdown when I read about this and verified it.)   
  3. All that lovely, low sugar, low starch wheat straw that I have been feeding to my donkeys in a (failed) attempt to keep their weight in check.  I had actually thought of the straw a few years ago and asked a doctor about it.  She told me I had to eat the gluten so using the straw for my donkeys was perfectly safe for me.  WRONG, WRONG, WRONG!!!! I have to ingest the gluten to get sick from it.  That includes breathing it in.  So, I have stripped the barn of all straw and won't be buying anymore.  How I completely remove all traces of gluten from a barn though, I have no clue.

A few of the things that Celiac does for me is cause relentless joint, bone and muscle pain along with brain fog that makes it hard to spell my own name and a crushing fatigue that makes me wonder how I am going to brush my teeth in the morning, let alone get through the day.  

Added to all this fun, I am having problems with my neck and shoulders that is partially work related and partially related to a bad shoulder injury I suffered about 15 years ago getting bucked off a horse.  
This past year, things have really come to a head for me.  I knew things could not continue as they were and I decided that this had to be the time that I take care of myself, which never comes easy to me.  If I were to choose a word for 2016 like some people do, it would have to be Self.  

I think (hope) that I will get the Celiac under control with the changes that I have made.  I am still trying to work with my employer to deal with the ergonomic disaster area my work place is.  I know they would like to just blame everything on the Celiac and dodge responsibility, but that is not true and I'm not letting them off the hook that easy.  I am not the only one having major problems with repetitive motion injuries and they need to address the problems in the lab for all of us, not just me.  

And, tomorrow morning, probably while most of you are reading this, I am gong to be having surgery that will, hopefully, alleviate some of the neck and shoulder problems.  

I am not sure when I will be back to the blog.  It could be a few days or a few weeks.  I will try to check in now and then.  In the meantime, if you need some reading material, I highly recommend the book Jennifer's Way.  I am making all my friends read this and all of you are my friends so you should too:)  

Speaking of....I could use some reading materiel as well so, if you've made it this far, tell me what you are reading and I will leave you with some gratuitous farm photos.







A fish sighting!





21 comments:

  1. Good luck with your surgery. Keeping good thoughts and hope to see you back on the blog soon.

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  2. Oh dear. Get well soon!!!

    A Man Called Ove and My Grandmother Asked Me To Tell You She's Sorry Frederik Backman. Two best books I've listened to EVER.
    A Shepherd's Life James Rebanks - then hand over to Farm Buddy. Even if you don't love sheep, you'll love this book. I promise.
    The Martian - can't remember author - but LISTEN to it. Excellent! Probably good in book form too, but the reader was perfect.

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    1. We both listened to A Shepherd's Life, and it was very, very good! I also know that Kris listened to The Martian, and she really, really liked it. However, I bet she has not listened to the first two that you mentioned. I just reread Prodigal Summer for the billionth time!

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  3. I am just beside myself with sorrow for your perdicament. When a person is as sensitive as you are, one single crumb from a jar of jam that is from regular toast, can be a real disaster for you. YES. Unfair that you have to be the one to do the cooking. (Alert: Beano has wheat in it.) I pray for your surgery today. Hopefully, FB can post for you and let us all know how you are doing?

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    1. Okay, here is the thing....I don't know how to post for her. However, I can tell you that she sounds GREAT!! She is tough, brave, and nothing but resilient!

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  4. I hope you recover quickly and the surgery goes well. Celiac disease is no fun, my mom has it and has to watch everything she eats. She also had a recent allergy test and apparently she has allergies to everything in the world.
    I assume it is because her 80 something immune system is compromised.

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  5. Good luck K with all you are dealing with and come back to your blog soon! I have been very lazy with mine but that's Spring/ summer for you - a million things to do. Sorry to hear about all the struggles and hope they resolve. My donkeys have put on weight also and they hardly get any grass at all these days (they think I am very mean) Don't know what I would do without the barley straw though ... hope you can find some very low sugar hay and low in Mcal/lb too! Look forward to hearing how things progress for you ...

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  6. Brew loose tea--it is so much better than tea bags.

    We hope your surgery goes well and is successful at eliminating your pain.

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  7. Don't worry blog readers...I did read the book, and it is a good one. It certainly gave me a better understanding of celiac disease. For example, did you know that Kris should not kiss Bess on the lips right after Bess finishes her gluten-rich dog food? Now that is rough, if you are limited in your Bess kissing. And I am brushing up on the recipes in the book, although I am not one of the great-cook friends that Kris mentioned.

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  8. I hope that all goes well for you! I've read a few books recently that I've enjoyed: Mary Deheim writes some fun mysteries.
    A Man Called Ove was wonderful

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  9. My prayers to you. This world of modern industrial food has hurt so many people. I would suggest reading The Guernsey Literary and Potato Peel Pie society.
    http://www.randomhouse.com/rhpg/guernsey/book/

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  10. Good luck. I will be thinking of you and hoping you get some relief.

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  11. Sending heartfelt good wishes your way Kris for a successful surgery and relief from your pain. I'll keep you in my prayers. Take care!

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  12. Wishing you good luck in surgery and recovery. I hope your immune system starts behaving itself!

    Bif

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  13. Sending you prayers and good wishes in the surgery with hopes that the recovery will go smoothly and things will settle down.

    It's not a book, but I loved watching Heartland on Netflix...many episodes, lots of horses and a good family. 💓🐴🌻

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  14. So sorry about all your difficulties, but if it had to happen to someone, you are the one that will grab it by the horns and beat it into submission! You seem to have a penchant for research and I am sure it will help you immensely.

    I hope you have the best possible outcome from your surgery and get some relief there.

    I like reading apocalypse stories, not the zombie types, just the survival ones, so won't mention any titles! LOL!

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  15. I'm currently rereading Urban Shaman by C.E. Murphy. Might not be your sort of thing but it's a fast ride and I love the main characters, Jo and Gary.

    Re the auto immune issues, GI not healing, joint pain and all the rest, do be careful that you yourself haven't picked up Lyme along the way somewhere. It all sounds rather similar to what I and my fellow chronic lyme sufferers have been dealing with. The ELISA test they use is useless for chronic lyme, because the bloody bug shuts down your body's ability to perceive it as a threat, so if you do suspect it, make sure you read up on how to get tested as accurately as possible. Best of luck with the op and all of the rest!

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  16. My unsolicited advice would be to seek out a naturopathic doctor. I am so thankful I found one a few years ago and consult with her immediately when given a directive by a conventional MD.

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  17. Oh, I just saw this. I'm so sorry to hear you're suffering. I hope you can get it under control soon.

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  18. Gluten is hidden everywhere...don't lick envelopes. My Dad has Celiac Disease, he thought he was dying before they diagnosed it. He does well except when traveling and eating in resturaunts that just don't get "it." I have an Uncle that died from it...so it is nothing to take lightly. Take Care! :)

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