I have not said this out loud outside the inner circle of People Who Take Care of Shira, and Judah didn't even realize the full extent until last night, but since I'm now having to modify my behavior heavily, I should say something:
I have been in considerable pain on a daily basis for several weeks now.
I have been in severe pain on a daily basis all this week.
I'd hoped to put off talking about this for a bit; I have a doctor appointment on Monday and wanted to wait til after. But I went to Elayna's school for her High Honor Roll ceremony this morning, and I found the two-block walk back from the bus stop excruciating.
It's been clear to me for a while that I have Something Else lurking. Because treating the celiac with the gluten-free diet did greatly reduced my pain and fatigue and everything. But if it was only the celiac, I shouldn't still be having pain. I shouldn't have to try to plan rest days after days of activity that would be normal for able-bodied people. If it was just the celiac and I was sticking to a GF diet (which I am; trust me, I'd know if I was glutened, and pain would not be the first symptom!), my body should be acting like that of an able-bodied person.
So there's that. I'm restructuring the next few days to have as much sedentary time as possible (which is still not nearly as much as I need, but I can't stop the world), and I hope that helps. It might, it might not. I'm posting this because I need you to be patient with me. If I can't walk to my bus stop, I can't go to your thing. And if I'm forced to walk somewhere, I will need my cane and extra time.
If the pain is severe enough for you to say it's severe, I think it's fair to say that no one who knows you should take this less than seriously or be less than patient.
Pain sucks. I'm sorry. I hope you get answers soon, and Good Drugs in the meantime.
(I have been on pretty much every pain medication ever, if you need input on efficacy, side effects, etc. With the disclaimer that I seem to tolerate narcotics better than pretty much everyone I've ever met - at the right dosing, they just stop the pain and leave me perfectly clear-headed and functional. Which I gather is not the normal experience.)
*big, gentle hugs* I am sorry you are in so much pain. I think I've mentioned before that I have fibromyalgia and sometimes need to use a cane, so I sympathize all too well with the augh and the pain and the needing others' patience.
Would you like me to send some healing/supportive energy your way?
Ditto on everything. It is a horrid thing and I share the sorrow (aka, I am so sorry). You must do what you must do for yourself no matter what it takes.
On top of the fibromyalgia, I have spastic ataxic cerebral palsy hemiplegic hypertonic hemiparetic left side, mild, and all the wonderful complexities trotting behind it (even sciatica and lordosis! and of course temporal lobe epilepsy!) ... so I understand fully and totally. My loved ones have endless patience with me; they are like superheroes at this point. I understand. Yes.
If there is anything I can do, even from Maryland, please let me know. I am still struggling to find the best balance between pharmaceuticals, supplements, holistics, and alternatives. Ongoing adventure. I would be happy to share if you wish, only if you wish. I am now a disability advocate.
"We write to discover what we believe." ~~Jonathan Carroll
"...part of you pours out of me in these lines from time to time." ~~"Case of You", Joni Mitchell
"There is a crack in everything; that's how the light gets in." ~~"Anthem", Leonard Cohen
"If you wanna be immortal, you gotta have something to trade in." ~~"Anything", Foetus
"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of Nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy." ~~George Bernard Shaw
"The real secret of magic is that the world is made of words, and that if you know the words that the world is made of you can make of it whatever you wish." ~~Terence McKenna
"When we die, we will turn into songs, and we will hear each other and remember each other." ~~Rob Sheffield
"I have a sickness in the brain. I'm allowed to make no sense to you puny mortals with your fully operational head-meat." ~~Spider Jerusalem
"Sometimes you crash. Sometimes, the fall kills you. And sometimes... sometimes, you fly." ~~Neil Gaiman
"Reputation is what other people know about you. Honor is what you know about yourself." ~~Lois McMaster Bujold
"Nobody realizes that some people expend tremendous energy merely to be normal." ~~Albert Camus
"Being able to speak the unspeakable is very powerful. If we can hear another person express where they get stuck, or lost, or repeat a negative pattern, it builds a bridge." ~~SARK
"Myths and legends die hard in America." ~~Hunter S. Thompson
"Don't undertake a project unless it is manifestly important and nearly impossible." ~~Edwin Land
"Having faced the fire of your initiation and survived its heat, you can now serve others in a whole new way. By being a living testimony to life transformed, you carry in your cells a sacred knowledge, and in your mind and heart a sacred fire. It's not the fire of youth but the fire of Prometheus, who emerged with the light that would light the world. It's a light that you only could have gotten from having faced some version of your personal hell, and now you are inoculated to the fires which rage around us. Sometimes it is fire that puts out fire, and such is the fire that now burns in you. This is not the fire of your destruction but of your victory. It is the fire of the middle years." ~~Marianne Williamson
"Considering how common illness is, how tremendous the spiritual change it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed…what ancient and obdurate oaks are uprooted in us by the act of sickness…it becomes strange indeed that illness has not taken its place with love and battle and jealously among the prime themes of literature." ~~Virginia Woolf
"The Universe puts us in places were we can learn. They are never easy places, but they are right. Wherever we are is the right place, at the right time. The pain that sometimes comes is part of the process of constantly being born."
"I will tell you a great secret, Captain, perhaps the greatest secret of all time: The molecules of your body are the same molecules that make up this station, and the nebula outside - that burn inside the stars themselves. We are star-stuff. We are the Universe made manifest, trying to figure itself out. And, as we have both learned, sometimes the Universe requires a change of perspective." ~~Delenn, Babylon 5
"Light Leak", by SJ Tucker
Swirling stars into my skin With a leaky stolen pen Stories end, pull kenning in Let the light leak in I finally let the light leak in
I am kenning all I can She and I, me and my mind, Writing hard for the one true thing That lets you let me in Beguiling what must to gain the trust of the minutemen I am worth investing in and I never stop spinning.
Kenning yarns out of my skin With a leaky borrowed pen Swirling stars and stories in Will you let the light leak in?
I hope it is fixable, and not too expensive.
Barring that, fixable; we can pass some hats and things.
Get well soon, darlin'. <3
(I have been on pretty much every pain medication ever, if you need input on efficacy, side effects, etc. With the disclaimer that I seem to tolerate narcotics better than pretty much everyone I've ever met - at the right dosing, they just stop the pain and leave me perfectly clear-headed and functional. Which I gather is not the normal experience.)
Would you like me to send some healing/supportive energy your way?
It is a horrid thing and I share the sorrow (aka, I am so sorry). You must do what you must do for yourself no matter what it takes.
On top of the fibromyalgia, I have spastic ataxic cerebral palsy hemiplegic hypertonic hemiparetic left side, mild, and all the wonderful complexities trotting behind it (even sciatica and lordosis! and of course temporal lobe epilepsy!) ... so I understand fully and totally. My loved ones have endless patience with me; they are like superheroes at this point.
I understand. Yes.
If there is anything I can do, even from Maryland, please let me know. I am still struggling to find the best balance between pharmaceuticals, supplements, holistics, and alternatives. Ongoing adventure. I would be happy to share if you wish, only if you wish. I am now a disability advocate.