Observations on my eating and diet

All related to health and stuff.

Noticed recently that I eat more when I’m in enough pain that I need to take additional pain meds. (Wouldn’t it be nice to see the numbers on calories burned for people who aren’t always in pain? Seems like being in pain must burn more calories!) On top of that, I realized just this morning, that if I don’t feel well at all – no mental focus, all the fatigue, enough pain that standing more than a few minutes might be an issue – I could add more – then I don’t want to actually make myself meals. In fact, I don’t even want to use the brain power to even think about what kind of meal to prepare. Perhaps I’ve forgotten that your diet is part of your self care? If I don’t assemble a meal then I snack. I’ll snack all afternoon instead. When I do that it’s difficult to keep track of what I’ve eaten. Anything that resembles a meal is way easier to keep track of – even just mentally through the day. This seems like the better option compared to just grabbing a snack instead.

My diet is already difficult because I have to balance limitations placed on me because of food allergies, food intolerances/sensitivities that can be damn near deadly, gastroparesis, migraine triggers, trying to lose or at least maintain my weight, and now PCOS. MS has its own set of dietary recommendations and only some of those are similar to the recommendations for fibromyalgia. Avoid these foods, eat some of those foods, etc. etc. One health problem says eat low fiber, another health problem says eat high fiber. Low fiber wins. For example, I can’t not eat rice or potatoes. It’s just not happening. If I followed all of these diets I’d eat nothing but baked chicken and uh? Well I don’t even know. I’d hate my life. Anyways.

I will be making myself consider whether I want to develop a list of meals – right down to how many chicken nuggets I would need – for when I don’t feel well and can’t summon the mental focus to figure out what to eat. Do I want to spend the time and energy on this or do I just want to try a little harder when I’m making food for myself? I also need to think out and actually make decisions more often. That makes no sense but here’s what I mean. I cannot eat dinner (The dinner that my awesome husband makes that will be way more tasty than chicken nuggets or fish and chips from the freezer that might be an easy alternative.) late if the dinner is higher in fat because then my stomach spends most of the night digesting it. This is especially important if any of my health problems are (currently) aggravated or flaring. Maybe, when I can stop and make these choices the flares of pain/fatigue/bloating/nausea or any of the other things that might happen to make me feel crappier than usual, won’t last as long? Not sure if I want to actually hope this to be true. I imagine it’ll help only some of the time.

Also, I had an epiphany related to my muscular problems and my stomach. Had this epiphany at 4 am after I woke up from coughing and started refluxing food so I crawled out of bed for a bit. All of your muscles are part of you, and everything really is connected. I have a great deal of trouble with my muscles not wanting to work at their full range of motion. My eyes won’t focus out after I’ve spent a few hours knitting. Muscles that aren’t regularly stretched do actually seem to get shorter (and tighter). I wouldn’t be surprised if my muscle problems are what’s causing the gastroparesis to flare up.

tl;dr: I bet stretching helps my digestion more than I can even imagine. I will try harder when planning food choices when I’m alone and eating for one because maintaining your own personal diet – with variety – is also part of good self care. And I’m not going to stop eating ice cream or chocolate, but I do want to try drinking more low fat goat milk.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Writing and Chronic Illness

I have this thing floating around in the back of my head. I’m trying to figure it out and give it some flesh and blood. What if fibromyalgia is what happens in my life that means I finally take the steps to become a full time writer? (Thankfully I have a supportive spouse in this equation.)

It’s weird because while wondering if my chronic illness is going to make it easier for me to change my life I’m also afraid my chronic illness has trapped me and I won’t be able to change my life.

The trick, I think, is to find a place to start. I’ve realized that writing is like mental exercise. I’ve started exercising at 10 minutes every day or every few days. We’ll play it by ear. I can do the same thing with my writing. To start. Blog posts don’t necessarily count.

I also recently read on the internet that on days you cannot write, you read about writing, or think about writing. I’m hoping this book will help too.

In theory, if the CoQ10 I’m now on seems to be helping my fibro fog. Exercise will also help. So, I just have to think about this like it’s a journey. You have to start someplace.