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Scheherazade in Blue Jeans
freelance alchemist
I'm already down tonight, due to feeling sick all day. It drags. It… 
21st-Dec-2009 11:36 pm
I have fallen but I will get up
I'm already down tonight, due to feeling sick all day. It drags. It wears on me. It has three weeks of having my Self ripped away, just when I'd gotten her back.

I have looked at detailed lists of celiac symptoms. I see my hippocampal sclerosis, my seizures. I see my pain and my fatigue. I see, unexpectedly, my tooth discoloration.

But the thing I see that cuts me open is "recurrent miscarriages".

When I was 16. Then 18-19 with the first husband. Several of them, clustered, still a terrible wound in me. Then, most recently, one that came almost as a relief. But I never know. I assumed scar tissue from the first one wouldn't let the others stick.

All these years I waited and bled; I'd wanted three children, and it is too late now. I adore the daughter I have. But not having more? Still hurts.

And it may all be the fault of doctors who never ran a simple blood test. Me curled up bleeding sobbing on the floor just because no one ever thought of celiac.

Or it might be my mother, who tried to cook without wheat for teenage me and gave up because it was a nuisance.

I could have had no pain. I could have had a son, and another daughter.

This is what I have now. And I'll do my best with it. But sometimes it is all so close.

Medicated and typoing; time for bed.
Comments 
22nd-Dec-2009 04:48 am (UTC)
Thinking of you.
22nd-Dec-2009 04:50 am (UTC)
Mrowr. The closest I come to this was being told I had chlamydia simply because I was sexually active. Two antibiotics and a case of very painful thrush later, it turned out I had mono. Yeah, a virus... which wouldn't be affected antibiotics. 99 degree persistent fever, no appetite? If it hadn't been for the lab adding the test without the doctor's prior knowledge, I would not have learned this.

I lost the girlfriend when I was told about the chlamydia. Then I ditched the doctor for rank incompetence. Then I ditched my hometown because this was the doctor everyone thought was the best and I couldn't even do better.

Life gave me other things to compensate for one event. Long memory and a strong will are part of those gifts.

You're a tough muthuhfuckah. Feel free to kick all the asses you want.
22nd-Dec-2009 04:53 am (UTC)
Yeah. The pain of what might have been hits so hard some times . . . Sleep. {{you}}
22nd-Dec-2009 04:54 am (UTC)
Would knowing that you were a celiac and avoiding certian foods have allowed you to have more children? If so, is there some reason you can not now, after you begin the diet?
22nd-Dec-2009 05:00 am (UTC)
It would.

I'm too old now, and gimpy, and don't want to pass down the celiac.
22nd-Dec-2009 05:06 am (UTC)
I don't buy too old. Too gimpy, I grok, and I certainly understand not wanting to pass on certain health issues but Elayna doesn't have it, does she?
22nd-Dec-2009 08:13 am (UTC)
More importantly, when will she be tested?
22nd-Dec-2009 05:06 am (UTC)
Just saying that I absolutely hear you. My issues are different, but I feel like a lot was stolen from me by lazy doctors and adults who found my sickliness convenient.
22nd-Dec-2009 05:26 am (UTC)
Yeah. [hugs] I was such a good brave trooper about my endocrine disorder, right up until finding out that it's hugely prevalent in first daughters of breast-feeding mothers in highly polluted areas. That's me. First breast-fed daughter of a Superfund site. Upon reading that, I went from sometimes-these-things-happen Zen to fury that this didn't have to happen, that this was DONE to me when I was too young to have the first clue. (If I wasn't a raging environmentalist before....)

Also, I'm currently reading about the search for the causes of cholera, and thinking about how many people died out of complacency and medical theories that were somewhere between dreadful and appallingly wrong.

Which is a really long way of saying to both of you that I sympathize, and sometimes it's hard to know what to do with all that bereft. I'm sorry that it took so long for doctors to clue in. War on apathy.
(Deleted comment)
22nd-Dec-2009 05:15 am (UTC)
Oh, honey.
22nd-Dec-2009 05:34 am (UTC)
I read this whole thing.
22nd-Dec-2009 06:04 am (UTC)
Oh, honey. I grok. I was never set on having kids, but having the option taken away completely because I got so sick at such a young age.. It still hurts, when I least expect it.

Have you thought about mentoring or fostering or something like that? I know that there are tons of kids in need and even if they're not yours, you'd still be making a huge change in a child's life.

And I also have experience with doctors who fail you. One of my doctors ignored my repeated requests to test me for PCOS. By the time I got to a doctor who would test me, I was already far into type 2 diabetes. With my family history, there was always a chance to get it, but with proper treatment for the PCOS, I could've staved it off a few more years. And, now, at age 32.. I'm already getting complications.

If there's one thing that will always upset me and anger me about my medical history, it'd be that one doctor ignoring me.
22nd-Dec-2009 06:15 am (UTC)
It may not be much comfort, but you're not alone.
22nd-Dec-2009 08:22 am (UTC)
[hug] Oh, darlin'. I cannot even imagine what you're going through right now...but you have my heartfelt sympathy.

Keep in mind, while this time is going to be hard for you...when it's over, sooner than you think now, you're going to *live* again. And I, and a lot of your loyal fans, will be ecstatic about that.

On a more practical note, as I said in my reply above, *when* will Elayna be having *her* testing done for this, since it is seemingly genetically linked? And, what is *your* prognosis for recovery when you've got the celiac under control? I recall you saying the fibro symptoms eased off, but what about the seizures? Has anything in your reading said anything about that?

Good luck. You've only got the next seven days, and then the doctors will confirm what you already know: that you *can* beat this.
(Deleted comment)
22nd-Dec-2009 12:52 pm (UTC)
The estimates of how many people have celiac or something similar are astounding; I expect that finding gluten-free food will get much easier over time and that this will become something docs test for early in life because it has so many many health "side-effects". So I wouldn't worry about passing it on, just about passing it on without the knowledge to be tested young.

And as to feeling old and gimpy, even in the couple of weeks you stopped eating gluten, you were feeling so much better; you may find with proper diet you're feeling better than when you had Elayna. And then you can decide whether you're "too gimpy".

But I sympathize SO MUCH with being very happy with the daughter you have, but still...I really wish things had worked out when I was younger to have more than one child.
(Deleted comment)
22nd-Dec-2009 02:01 pm (UTC)
Oh, I know. I know. I have the same anger, for different reasons.

*fierce hugs*
22nd-Dec-2009 02:08 pm (UTC)
Yep. We are sisters here. *fierce hugs right back*
22nd-Dec-2009 02:08 pm (UTC)
*hugs*
22nd-Dec-2009 02:10 pm (UTC)
*virtual hug*

It's NOT okay that this happened to you. It's NOT okay that doctors never thought outside their decision-tree, even once, to see if there was something hurting you.

But it IS okay to feel crummy about it for a while. In fact, I recommend that, once the holiday madness is over, you schedule time to feel crummy about it. There should be warm, soft jammies, and tea, and whatever TV/DVD viewing you reserve for sappy therapeutic stuff (you know, the kind of stuff you'd never watch otherwise). Bonus for cuddly stuffed animals. Extra bonus if the real ones are available for snorgling (provided there are no allergy issues at home).

Then get up and kick its snivelling li'l butt :-) And do all the amazing other things you were put on this earth to do. Those of us who were similarly overlooked, patted on the head and dismissed by people in white lab coats with "MD" after their names have to be our own damn heroes.
22nd-Dec-2009 03:48 pm (UTC)
Yes.
22nd-Dec-2009 04:26 pm (UTC)
Yes. My experience of needless pain, lost years, and missed opportunities is different as you know. But yes. Know that there are others here who understand.
23rd-Dec-2009 05:20 am (UTC)
I love you, mom.

(Also, I think you just volunteered for future-e-grandkid babysitting duty.)
23rd-Dec-2009 11:57 am (UTC)
Just to chime in with the anger against doctors thing. It was *two years* before I could persuade myself to go back to a doctor after the celiac was diagnosed. I was incandescant with anger whenever I thought of the years from the age of 8-30.

I still have a reaction in which I am very, very forceful about being ill because I am convinced I will be disbelieved, and I won't go into detail about the way it fucked with my teenage years.

I finally decided I did want children when I was 32, when I had already made decisions that made it next to emotionally impossible to actually do so. 32. The first year in which I had fully recovered from all the effects of celiac and when my hormone balance was right. I don't think that is coincidence. Had I been diagnosed in my teens, I would probably have children, and while I accept that I don't I do regret it.
23rd-Dec-2009 12:13 pm (UTC)
I still have a reaction in which I am very, very forceful about being ill because I am convinced I will be disbelieved, and I won't go into detail about the way it fucked with my teenage years.

Me too, completely! My poor husband has to deal with me tying myself in preemptively-hysterical knots every time I go to a new doctor...
24th-Dec-2009 04:25 am (UTC)
*hugs*

We can't go back in time, but we can go forward and further awareness.

I hope that brings you some comfort; I know that's what I try to tell myself.

*more hugs*
4th-Jan-2010 08:28 pm (UTC)
I have no words for this. *hugs*
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