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    EXOTEC   36,534
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Disgusted and frustrated

Saturday, November 09, 2013

I've been struggling with an unexpected case of edema for about a month or so. It came on overnight and has been very slow to resolve. It doesn't help that I can't exercise to move some of that fluid out.

I've also been on the specialist-wagon lately. First, my pulmonologist tells me (before the edema episode began) that the every-other-day diuretic isn't cutting it. Daily now. Okay, fine. I'm in the bathroom every 2 hours, round the clock. Except when I know I have to go out, in which case I just don't take it.

Then, the next trip a couple weeks later to the cardiologist... and he's not content with the daily furosemide. He changes it to TWICE daily. Fabulous.

And today, it's the endocrinologist. I've naturally gained weight, mostly water (even he says; but I'm not so sure).
So he asks how much water I drink, and I said, well, not as much as the typical recommendation - maybe 32 or so ounces a day... but I'm always thirsty. To which he replies - no! no more than 24 ounces per day until the edema resolves! I know in my mind this makes sense. But I'm already dying of thirst, and phlebotomists hate me because I'm always dehydrated to boot.
Then my husband, traitor that he is, offers that I eat too much salt (he isn't fond of salt, so he thinks no one else should have any, either). So the endocrinologist falls right into that and tells me "no salt!" I suppose it barely matters, since I'll have nothing to salt shortly.
He's also the one who's got us on this LC/Primal diet. That has been a good thing, and I'm glad for his direction. But I'm not nearly so happy about these new constraints. If he had his way, we'd be no/low fat, too. In the past we've agreed to disagree on that point, and it's been okay.

So, here's my dilemma:
I'm supposed to limit my carbs to 30 - 50 g per day. I can do that.... I did it in the beginning, and I do honestly need to get back there. I've let it creep up, and that just isn't working.
BUT!
I have intolerances and sensitivities. FODMAPs and nightshades are nearly 100% off my list of edibles.
My gut can't tolerate much roughage due to scleroderma-related GI problems.
Similarly, I have to be very cautious with heavy proteins. I can eat lots of eggs, and do... but this creates a bit of stress for the endocrinologist, who thinks fats (ie egg yolk) are at least semi-evil. But I can digest them without distress. Meats, well. I have to eat small quantities and space them out.
I can't tolerate any cruciform veggies. Due to the low carb, I'm not supposed to have any starchy veggies. Or sugary ones, like carrots. I do eat small amounts of carrots, and we had a small skirmish about eating green beans because of the teeny little beans in there! sheesh I agreed to eat the frenched ones which possibly have fewer beany-seeds in them.

Someone please tell me what the heck it is I'm allowed to eat?!?
I quipped somewhat sarcastically that I ought to just quit eating and live on meds, supplements, and Atkins shakes. He (endocrinologist) says I can do that. I don't know if he's being facetious or not. But I'd better not drink *many* of the Atkins shakes, at 11 ounces per container! That's half my day's allotment of fluid!

So I'm mad and frustrated and at the moment I've decided to do exactly that. I know, after I've fasted a day or so, the hunger will go away. What I'll do after that, I have no idea.
Probably collapse from exertion slogging to and from the bathroom and end up in a hypoglycemic crisis in the ER. And I'm not diabetic.

Meanwhile, DH is playing up concern by offering me food. Well, I can't have any food. And any food that I might be able to accept isn't attractive to me totally sans salt. So there you go.

And maybe me, too.
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  Member Comments About This Blog Post:

EXOTEC 11/9/2013 8:31PM

    Thanks for that idea, IceDemeter. I will have to look through my recently received Rxs. We have to order through a mailorder pharmacy (per our insurance), and they've gotten things wrong before... and the manufacturer changes depending on where they get the best price and which warehouse around the country they happen to be sending from *this* time.

I will definitely check. I hope it's something that simple!

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ICEDEMETER 11/9/2013 6:25PM

    You know, your explanation that it "just appeared overnight" twigged something in my incredibly leaky memory, so I had to call my Mom to double-check... She has had exactly the same thing happen a few times over the years, and just last year she was able to pinpoint the cause: she picked up a new prescription of her high blood-pressure pills and that triggered it. The med itself hadn't changed, but she always uses the generic version and she found out that they randomly change the binders in the tablets, and the binder that they used for the batch she got turned out to be something that she's allergic to. When she went back in her notes, she realized that every time she had a surprise bout with edema, it coincided with picking up a new prescription. It always took forever for the edema to clear up because she, of course, was taking a pill every day...

It might be worthwhile for you to check to see if you had picked up a new batch of either prescribed meds or supplements right before the edema appeared and see if one of those might be contributing to it. It's a long-shot, but you never know...

Strong thoughts!

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PATRICIA4472 11/9/2013 11:55AM

    Sending you a hug and surrounding you with positive thoughts from afar.... So sorry you are going through this.... emoticon

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KERRYG155 11/9/2013 10:23AM

    I'm thinking rather than taking diet advice from several different doctors that a nutritionist would be the person to ask. I also wish doctors would keep up with info-eggs and egg yolks are not bad. TEggs are good protein and the yolk contains Vit D which we all need and the cholesterol does not stick to the arterial walls like bad cholesterol does. There is an enzyme in the white that helps the cholesterol slide through. I will have to look up the FODMAP because I don't know what that is. I'm sorry you're having so many problems right now. I sure hope it clears up somehow, someway!

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ICEDEMETER 11/9/2013 10:06AM

    Gadzooks - sounds like something has gotta give (and I do hope that it's not you!)

If your bloodwork shows "normal" levels of sodium and potassium, then the "no salt" edict should be taken with a ...well, a grain of salt! Maybe a middle ground will work out best for you in the long term.

I can see your point on fasting for a few days to get your body to just settle itself down. Hopefully the edema will start to resolve with that, too. That's my usual solution for when things go south.

I know you've gone through the whole thing of figuring out the FODMAP and nightshades that you could not tolerate, but how long ago was that? The reason I ask is that my food tolerances seem to shift every couple of years (apparently my body learns to tolerate what it hasn't had for a while, and starts getting pissy about stuff it gets every day), and I end up doing a whole new elimination to figure out where I'm at now. It's possible that you have a similar situation, and could find out that there are some things that you can add back in, while having to eliminate others.

You might want to include your supplements in this experiment, to see if there's something there that you might be reacting to now. They do tend to change formulations pretty randomly and there's no way of knowing about it.

Strong thoughts and gentle hugs...

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EXOTEC 11/9/2013 9:40AM

    WOUBBIE -
I have absolutely no idea. It literally came on overnight. It was so bad in the beginning that my thighs didn't even slide against each other when walking... what little walking I can do.

I suspect there's some connection with it and my scleroderma. I've had lower leg edema and skin thickening there for a year or more that just doesn't resolve. Sclero is a connective tissue disease, and mine is far milder than what I've seen described by other 'victims' on the Sclero site.

I certainly hope it does resolve back to prior levels. It's getting better. At least I don't have complete occlusion in my thighs now! That's a relief. But it's not enough, not yet.

Some specialists know more about it than others. Rheumatologists are the "gold standard." Mine is great. My cardiologist and pulmonologist work closely together to keep track of my incredibly high pulmonary hypertension. My GI specialist is familiar enough with the specific symptoms that we can find treatment options together - she doesn't just throw a med at me. But even though I would EXPECT an endocrinologist to have a higher level of expertise with metabolic and autoimmune conditions, this one doesn't seem to. He's great otherwise, but he likes to quote he's been doing this for 30+ years (or whatever time frame, I don't remember) and since he's had good results with his other patients, he just won't step outside that successful box. I don't blame him. I just wish we had a bit better rapport regarding my particular issues.

Meanwhile I'm trying to be compliant.
I hope that lasts.

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WOUBBIE 11/9/2013 9:08AM

    (((hugs)))

Oh my, how frustrating. Any idea though what's actually causing the edema?

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TWESTEN1 11/9/2013 8:34AM

    I wish I had some advice for you, but I don't. All I can say is that we are all here for you and I hope that you get some answers. Try to treat yourself to something non food related and just remember, this won't last. Things will get better. Sending hugs and happy thoughts your way :)

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KANOE10 11/9/2013 8:23AM

    There are some teams here that deal with GERD. Maybe they could help you. Also there is a book called The Plan that deals with eliminating foods that you get a reaction to. I wish you well on getting rid of that edema. Hang in there.

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NOWYOUDIDIT 11/9/2013 7:35AM

    Oh my! emoticon I know what you mean. I have different issues but similar recommendations! Getting older is not for sissies. Especially if your health has always been a challenge! My hubby and I are opposite- I don't care to salt anything- he salts anything that goes near his mouth without tasting it first!! But he's thin, on no meds and thinks he's invincible!

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Comment edited on: 11/9/2013 7:35:50 AM

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