Where in the world do I start? How on earth do I describe where I have been the last three months? I could say I've been to eight different doctors but that's just a glimpse. In some ways I feel like I've been to the other side, struggling with depression and a mind that seemed farther and farther from my own. I wouldn't say it was an out of body experience because the increasing daily pain only reminded me that it was very much an inner body experience. Things got worse before they got better and there is still no diagnosis to my illness.
Right around Christmas time I felt myself going over the edge, both mentally and physically. We sent the girls to my parents house for the weekend just so we could get ready for Christmas. There was no excitement in me whatsoever. I freaking love Christmas and it's by far my favorite holiday. But feeling unable to enjoy it wholeheartedly was torture. But we mustered through it and I was even able to enjoy my girls enjoying it.
The day after we travelled to Indiana for an extended family get together. The ride out consisted of heat wraps, pain killers, bouts of unexpected crying (from me, not my kids) and two children who were troopers for the 11 hour trip. The trip home consisted of pretty much the same thing, plus a Grammy in tow who helped make sure the kids were still troopers.
By the time the holidays were over there wasn't a part on my body that didn't hurt. My eyes now had dark purple circles under them. My ear hurt, my sinuses hurt, my teeth hurt. My knees, knuckles, jaw, and other joints were aching. My muscles were sore. Something continued to wedge itself into my rib cage. Whatever that was (and is) sent pains into my butt cheeks, groin, and hip. I felt like I was having labor contractions while at the same time something was pulling the tissue inside my abdomen down towards my feet. My lower back and spine hurt. I would make Eliza hug me sometimes because I needed something to feel good. I would make Chris massage my back and butt then rip farts in his face. For better or worse baby.
The turning point for me was a family game night. We sat around the living room floor attempting some quality time together. I was miserable. Why the hell could my six year old not play this game right? Why is she being silly? What's so funny here? Sit still and play the game right so we can be done with it so I can put you to bed so I can put myself to bed. It was at that exact point I realized something was very wrong. Something was poisoning my body as well as my mind. So I did the only thing I could think of until someone told me something different. I gave up gluten.
I had been tested for celiac disease both with blood work and an intestinal biopsy. Both were negative so I didn't see gluten as a culprit. Then I started to research non-celiac gluten sensitivity and found that the condition is very different, but can be just as serious.
Right now I have been off gluten for over three weeks. I have energy now that I haven't had in years. Some days I honestly feel like I'm on speed. The depression, fatigue, muscle aches, and joint pains have lessened significantly. I've even laughed a few times. My guts are still a bit of a mess but I know it can take months to restore them. Having said all this, we are still waiting for a doctor to walk us through what this might be. The only helpful findings were gastritis (inflamed stomach) and a vitamin D deficiency. That's it. Thousands of dollars of doctors, procedures, and blood draws, and that is all they can find. Some doctors say no news is good news. Getting off gluten and pain killers has helped me to believe them.
I've only known illnesses in my life that have been cured with time or a prescription. This one seems immune to both. But life off gluten has proven helpful so we're hoping it's just that simple. I have an appointment tomorrow with my Internal Medicine Dr. Following the appointment he will be speaking with my thyroid doctor. Hoping their pow-wow yields something. I have been blessed with good doctors who seemed to do the right things in the right order then sent me to the next doctor when they exhausted their resources. Except for one. He was down right awful. He tried to con me into two procedures, sent me home with a jar of fiber, and sent me a bill for over $500.00. I should have taken Karla's advice and kicked him in his colon. I love the advice friends feel they are allowed to give when you are feeling down and out.
Today I have actually sat down and written something. I even baked some muffins. Those two things are a first in many months. The muffins are gluten free and seemed more like a science experiment and I have eaten four of them since I've been sitting here. This process has been long and will probably only get longer. We know that future appointments may send us in a totally different direction than we had anticipated. But feeling this much different already leaves me hopeful. And hungry. But a lot less itchy.
1 comment:
Hang on buddy. I always explain it to people as my new "normal". New becomes old and then it just becomes my "normal". People try to hang on to hope for me that I will be healed. I tell them accepting my normal IS being healed. I am so grateful that you were able to find something that helps. Every little bit of reduced pain is helpful. Being your own advocate is hard when you are depressed and no energy. I pray that you continue to find answers or get to a normal state of acceptance. My mom would have a fit if she heard me say this. God didn't design us in His image to be in pain. But God didn't design this world to be so screwed up either. So we accept the consequences. Sometimes physically in our bodies. You are amazing and very tough. I pray you will be able to enjoy your girls and hubby. Thanks for making the trip out to Indiana. I needed to see you and hug the poison out of you. Oh and happy birthday. Love ya!
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