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:
- 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.
- Tea bags. Yep, goddammedmotherf***ing TEA BAGS. Some of them are glued together with gluten. (I confess to having a
slightmajor meltdown when I read about this and verified it.)
- 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!