Monday, May 20, 2013

Where have I been?

Many of you may have noticed my absence in posting weekly Tot School information about things Tripp and I are doing. We've had a lot of changes since my last post in January. We are still Tot Schooling. Tripp has learned almost all his numbers 1-9 and almost the entire alphabet. He knows colors, and he's picking up words at an alarming rate. The reason for my lack of posts is that most days I can no longer hold a camera, and most days it is very hard for me to type on a keyboard for any length of time.

In February I was diagnosed with an auto-immune, inflammatory arthritis. Things had been going downhill since just after Thanksgiving, but I kept hoping it'd get better. But it hasn't. I have severe pain every day. By 5 or 6 pm my hands and feet are very swollen and painful. It hurts to walk. It hurts to use my hands. Some days I'm swollen from the knees down and from the shoulders down. My life has changed drastically. I've been unable to do many of the things I love doing, and unable to do many daily living tasks.

Through all this, I've kept the majority of it to myself. I've spoken to a few dear friends, and I have a small group of friends on Facebook with similar issues who have banded together for support. I have posted very little of any of my new trails and tribulations publicly, so most of my larger circle of friends have no idea what's happened to me. All of my friends in the group agreed on one thing: we needed a judgement-free, SAFE place to talk about our pain and health issues, without getting the eye-rolls from people in our feed who don't believe us, don't think it's "that bad," or just don't want to hear it.

I posted a little about my pain issues for the first time since our group was created on my page last night. (My wedding ring caused an open sore on my finger, because I had swollen up so much and didn't notice because everything else hurt.) Within a few minutes, a very dear and well-meaning friend had posted a link to a Dr. who "cured" herself from MS by changing her diet drastically (Paleo, GF, probably vegetarian.. I didn't watch it all)... And I just want to scream: IF YOUR DIET CURED YOU, YOU WERE PROBABLY MISDIAGNOSED!!!

Don't get me wrong. I KNOW diet helps. I'm not Paleo. I'm not gluten-free. I'm no longer vegetarian, but I don't eat beef or pork. We eat *very* clean and VERY little processed foods. We have a garden with fruits and veggies, we go to the farmer's market. Eat organic when we can afford it. I make 95% of everything we eat from scratch. Bread, yogurt, spice mixes, extracts, salad dressings, some cheeses, hummus, tortillas, baked goods, wine... really, the list goes on and on.

I'm not saying this doctor didn't have amazing results from changing her diet. Yes, changing her diet may be what got her out of her wheelchair. But, I also firmly believe that the MS will catch up to you eventually, and you're just staving off the inevitable. Do I think that's worth it? Yes. Has it worked for me? No. None of the major diet changes I've tried over the last 18 years have worked for me. There are a few things that are triggers, and I stay away from them. But avoiding white flour in noodles/bread and buying whole wheat ones is not a major diet change.

Just because I don't talk about it, doesn't mean I haven't tried it. And I've got a new set of pain and health issues. A new diagnosis. I'm still trying to find my way through every day changes. I'm not currently looking to make drastic diet changes for my whole family. Because, believe me, most of these changes aren't something one person in a household can do. It's all or nothing. I love my large group of granola friends, but I don't know what to say to them when they keep offering diet changes as cures. Well, I don't know what to say that wouldn't hurt their feelings. I don't believe that eating like a caveman would cure me. Cure is a very strong word to me. If the disease was cured by changing your diet, then it should stay that way if you change your diet again. Cure is a means of healing to restore health. When someone's cancer is cured, it is gone from your body and (more than likely) won't return. But if the treatments prolong your life, but your cancer is still there, that's not a cure.

I also don't think they'd want to see me after giving up chocolate. :)

Before my arthritis issues started two years ago, I had my fibromyalgia under control. I had 2-3 flare-ups a year. Yes, I had daily pain. But it was all manageable. I was on one medication and birth control. Do I think my diet changes helped manage that? Yes. But so did my daily yoga, and other health changes I'd made. The diet was only a small part. Everyone's body is different. Treatments may not work for me, as it did for you. Not everyone's body responds to natural treatments the same way. I have a friend with MS who milks goats daily to help her pain in her hands. Every time I try daily repetitions of things similar, my hands swell up and get worse and I can't use them the rest of the day.

I also have to be careful of what I do and try to do each day that I think may leave me out of commission. I have a not-quite-two-year-old to take care of by myself each day. Do you think he understands when mommy can't use her hands anymore? And how the hell would I change his diaper?

Things are just so complex for me right now. I've made changes that haven't worked before. I've made changes that made everything worse. I've made changes that have made things better. My family and I are still adjusting to all these new changes, on top of still adjusting to being a little family of our own, and I'm not looking to make drastic changes *yet*.

As my dear, sweet friend who's also having new health issues says: "This has not just been a change in what I DO but who I AM. HOW I am."  ~ Missy Dugan