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.
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.
Takbir power!
ReplyDeleteYes, takbir power is much more useful. :D
ReplyDelete