Thursday, August 21, 2014

On cosmic hamsters, Grainy Golden Girls, and Swamp Thing

I think I am done complaining and stressing (for now. I suspect this is cyclical and I am but a senile hamster trapped on this cosmic running wheel). Life is a mixed bag for all of us. No one gets everything. The hope is that no matter how insane your mix is, you at least get something in it that you value, whatever your values are. Luckily for me, I value my faith, and poor health not only does NOT reduce my faith, it can actually increase it. So there.

I am now trying to see what I can do to make things a bit more manageable. I’ve started trying to slowly reclaim my lost strength and stamina. A year ago, I worked out over an hour 5 days a week, but I’ve not done much of anything for about 6 months, after I started feeling my aneurysm twinge to the beat of my pulse. Earlier this week I finally returned to the gym, and have begun the agonizing process of trying to get fit again. I'm still limited to lifting no more than 5kgs, so I’ve started with walking on the treadmill at a brisk pace for 30-40 minutes. I stop when the skin on my feet starts to blister or rip (a lovely EDS side effect). Aside from the foot pain, I feel fine. Or rather, I felt fine. Until the day before yesterday. My hips, back and neck have been on fire ever since and I’ve got a limp that’s one part cowboy one part got-shanked-in-Sing Sing. I guess that’s either my fibromyalgia or my arthritis. Take your pick. Whee. :D

I’ve read a lot about the impact of food/nutrients on the severity and manifestation of various illnesses and symptoms and am looking to cut out the 'bad foods' and replace them with good ones.

I kind of grew up on aspartame (my well-intentioned mom’s attempt to keep her kids from sharing her weight problem), but have been avoiding it for the past year. The cancer in mice research you once scoffed at before somehow becomes much more ominous when you’ve had cancer yourself. So I take Stevia in my tea and coffee now and try not to rely on ready-made diet sodas or foods that contain aspartame or its ilk.

I’ve done low-to-zero carb for months on end and have not noticed any change in how I feel, so I’m not actively trying to cut them out now. I don’t eat a lot of bread or rice as it is, but I am going to try to avoid more processed foods, like cereal and crackers. And while I’m not gluten intolerant, there seems to be a lot of claims that our wheat reliance is not good for our health, with at least some research supporting that it can worsen IBS symptoms. I do have IBS-like symptoms often, which is pretty normal for EDS, so I’ve been looking at the alternatives being touted in the ‘ancient grains’ trend.

The ‘ancient grains’  trend claims that the grains our ancestors ate are better for us because they’ve not been selectively bred and genetically modified over the centuries like wheat, corn and rice. Debates on the dangers of GMO withstanding, I figured it’d be worth trying them, especially as some have more protein, insoluble fiber and nutrients than the usual stuff. So I’ve picked up a bunch of locally-available ‘ancient grains’ – quinoa, amaranth, barley, and millet – with the notion that I will start working them into salads and making ‘rice’ with them. So far though, they’re chilling in the cabinet, having ancient grain conversations. Y’know, catching up on what’s happened since Roman times, complaining about grains these days, worrying that Frankenfood is taking their jobs, etc. I imagine something like Grainy Golden Girls, with more patrician accents.

I also want to eat more highly nutrient dense foods, in the off chance that somehow my poor health is being exacerbated by a missing nutrient or two. Though I eat healthy, I tend to eat repetitively, and have had a diet based around apples, cabbage, chicken, coffee, popcorn and lettuce for years. I had a bunch of superfood powders brought from the US – acai for its highest Oxygen Radical Absorbance Capacity among fruits, flavonoids, and anthocyanin effects; goji for its beta-carotene, immune system support, energy and improved gastro function; kale for its vitamins K, A and C, antioxidants, iron, fiber, anti-inflammatory Omega fatty acid; spirulina for its protein, amino acids, gamma linoleic acid, chlorophyll, omegas, calcium and tons of other nutrients/vitamins; and wheatgrass for its vitamins A, C, and E, Iron, iron, calcium, magnesium, amino acids, and the long list of diseases it supposedly fights. A spoonful of those all go in the blender with aloe juice, coconut oil, gelatin, green tea, gooseberries, spinach, cucumbers, banana, carrots and agave – all things that have valued nutrients. I give it a whirr, and the resulting dark green sludge is my breakfast of champions. With that unbeatable mix, either I start feeling better, or I start becoming Swamp Thing. It’s a win-win.

Bottoms up!  

Wednesday, August 6, 2014

References to TMNT, The Simpsons and Star Trek all in one depressing blog post

It's not been a good week. For reasons unknown to me, it seems like my body has finally woken up and been like: "DAYAMN. I DO NOT FEEL GOOD. LIKE WHAT THE HELL MAN. DID YOU SLIP ME A ROOFIE? HOW LONG WAS I OUT? WHAT'S WITH THE NEW SCARS? WHY AM I ALL BRUISED? DUDE, WHAT DID YOU DO?! HOW COME EVEN MY HAIR HURTS? HAIR DOES NOT HAVE NERVES. I WOULD KNOW. I GROW IT. IT SHOULD NOT HURT. OW. OK EVEN COMPLAINING HURTS. OWWW!" 

Basically, yeah, everything really hurts. Body wise. Brain is ok. Brain is humming along, still throwing out random spikes and jolts, mushing my words and occasionally going all throbby, but otherwise ok. It's had its moment, proved its point, and doesn't need the attention any more. But my body is like: "MY TURN. WHEWWWW."

And along with the body pain, there's weakness. My legs seem no longer up to the task of carrying me around. They go wobbly if I walk or stand for any great length of time and everything tires me out. Even sitting. For someone who's been athletic and strong all of her life, this seems like such a huge betrayal. Suddenly, I'm Krang. I'm just a grumpy vulnerable blob of talking brain that is marooned and fairly useless unless my red briefs wearing robo-body plays along and does my bidding.

What bothers me about all this is that, I don't know how and why it's happening. I didn't feel this bad in the weeks after my surgery. I didn't even feel this bad last week. But this week, it's like the rug's been pulled out from under me. And I can't figure out why.

My worry is, this isn't a side effect of the brain surgery I had last month. I worry that it's the slow degradation that my sister Zeba has been experiencing over the past 4 years. You know, the one she 'came out' about in that Muslim Matters post. The one where she shared that she's not gay, but she could be dying. Yeah, that one. 

You see, Zeba and I have been competing in medical misadventures for the past few years. Not intentionally of course. That's just our running joke, so's to not cry.

Here's the summary: I threw the gauntlet down with scoliosis and spinal degeneration about 5 years ago. She upped it with her own scoliosis, extra ribs, and osteopenia. I started getting chest pains and muscle and ligament tears. She started spraining and breaking things. I'm diagnosed with fibromyalgia and spondylitic arthritis. She's diagnosed with arthritis and Sjogren's Syndrome. I develop bursitis in my hips. She can't go a few months without bronchitis or laryngitis. Doc finds lumps in my thyroid. She starts blacking out for no reason. The degraded discs in my upper spine start pushing into my nerves. She starts getting progressively weaker and losing nerve function. Doctor tells her he doesn't know what she has, but it's probably terminal. I have malignant cancer. New doctor tells her he thinks the unknown ailments are Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachychardia Syndrome (POTS). When being checked if I have it too, doctors discover I have a brain aneurysm. As well as the other two.

TL; DR version: We're a few illnesses off of Monty Burns Disease. You get the picture.



Where we are now, is we've both been diagnosed with EDS and POTS, which explains about 90% of the things that had been going wrong. But, it doesn't explain everything. It doesn't explain the muscle weakness and loss mobility that's been happening to her, and now, I fear may be happening to me.

And that's something I have not yet made my peace with. Hell, I haven't made my peace with Zeba's severity of illness, and that's been happening for a few years. I keep hoping and praying and researching for some kind of explanation and solution. But I haven't found one yet. And now I'm worried it's catching up to me too. Going out with a subcranial bang, I was ok with. A gradual progressive weakening and loss of function, not as much.

I guess I know what I have to do. Which is get over it and stop stressing. Allah gives and Allah takes. This life is a test, and everything I am given in it, even my body and my health, are just a loan that can be reclaimed. The goalposts have not moved. They remain as living this life to the best of my ability in pursuit of the approval of my Creator. That doesn't require strength or mobility. But it does require my faith. And that I have to make sure doesn't get eroded or damaged by life's difficulties.

Turtle Power.