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Still Waiting & getting more confused


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Hey y'all :)

Been awhile since I've posted about my own situation (although I've tried to log on to give others support and check in). I've just been mainly so exhausted. And be forewarned, I just re-read this and it's LONG. Sorry :lol: I don't mean to exhaust anyone reading this. Just venting, all at once.

When last we left our heroine (me :P ) she was fighting with ER docs and waiting for an appt with her PCP. I was able to meet with him and come to some conclusions (to get me thru the here & now) and have done some research on my own in meantime--reading Dr. Grubb's articles and books, going through forum info, but still have not definitively heard from Dr. Grubb. & I just seem to get more & more confused. Darn foggy brain!

I continue to have POTSY-world s/s daily :( : syncope or near-syncope, morning "shakes," extreme fatigue, brain fog, can't stay warm/get too hot, achy, nauseated to ravenous, BP & HR all over the place, thirsty all the time, drinking a moderate amount, but feel dehydrated. For some reason, 1 litre of IV fluids every 48 hours or so is keeping the s/s down. I'm still not quite feeling myself, but I feel much better than a few weeks ago. :) My doc wrote me an outpt order for the fluids :D HOORAY and I've not been hassled once :D:D double HOORAY (except for having to give the usual National Geographic Special on "Dysautonomia and its Common Causes, Symptoms and Treatments" to each new person I encounter. LOL) I must admit, that gets tiring. And even though I know it's important to teach to a willing audience, I'm sometimes too tired to go through it all every other day.I feel guilty about that. :ph34r:

I will be quitting my part-time job within the next week or so in order to focus on school. I thought it was going to kill me to have to tell my dad I couldn't work for him anymore, but he has been understanding, even compassionate and it has brought us closer in some regards. I just may have finally learned that I just can't do all that I used to. And I'm going to therapy to help me emotionally deal with having POTS and all it's little ripple effects a bit more solidly. I thought I had it down-pat after 8 years, but it seems a tweaking is in order, because like every 4th day or so I think, "Today is the day my cheese is going to slip right off the cracker." Maybe I'll get better than I am now again, but I don't know that I'll ever be the same. And that's OK, I know it is. It's just different than I planned. If I can finish school and eventually work part-time, that would be a goal to shoot for. And it seems like it will be do-able, eventually. Right now, my only goal is sleep and school. Thank goodness for spring break! :)

I have met with my school advisors and they are willing to work with me and are not gonna throw me out of school (well, yet, anyhow ;) ). My grades/work is solid and they have said they can be flexible as long as I don't get any worse....gulp!! How can I predict that? My family is being super supportive, as is my spouse, as ever. I am hoping the reduced stress of not working will decrease my need for IV fluids, but if not, I will consider a port-a-cath. My PCP is onboard there and has been WAY helpful. I am grateful.

My PCP is having me tested for diabetes mellitus and running a 24-hour urine to make sure kidney function is still OK. (I had LOTS of kidney tests last year, so he doesn't think it's diabetes insipidus;he thinks it's probably related to the dysautonomia somehow that we don't understand yet). So, we still don't know WHY the IV fluids are working, but for now, I'm just going with it. Is it possible to have mixed-type POTS?? Anyone??

Here's where part of my confusion is: I was rx'd Cymbalta a month ago and though I gave it the college try (over 3 weeks) I felt AWFUL on it. Am only now starting to feel better after being off for 6 days. I just read Sef100's post about nor-epi and am wondering why Cymbalta was ever rx'd for me? I do HORRIBLY on SSRI's. It's also been suggested that I begin Procrit (erythropoeitin/epigen) but my when I read Dr. G's article, he said procrit wasn't good for my type of POTS. (Which made sense when I read it.....b/c procrit would raise blood volume and thus BP, which would not be good for me, cuz my BP is already off the charts w/o all kinds of meds....plus my H&H is A-OK) So??? I just don't know. I'm absolutely dizzied by all of this overwhelming amount of seemingly contradictory information. Anyone with any clues? I wish Dr. G's office would call me back.

Sigh. and I'm just so tired and feel yucky to boot. No answers yet. Still waiting. I know plenty of all y'all have been where I'm at now, waiting at a crossroads, and wondering..... Sad, frustrated, impatient, sleepy, irritated, curious, fed-up, ambitious and syncopal all at the same time, it seems. Is there an emoticon for that? Lol

Gosh, I didn't mean for this to be a diatribe. I hope you all continue to have peace, strength and more good days than not-so-good. Thanks for listening.

Love and light,


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Oh, Lulu!

This illness so s**ks sometimes! (Poetically, that's call alliteration.) (Did you smile?)

Our heroine is flagging, but she's a strong woman and needs no rescuing from a knight in shining armor. A cheerful nurse with a warm IV, warm blankets and a bed are what this damsel in distress needs!

Have mercy on us non-medical people with the shorthand! I thought s/s was part of SSDD. But Acronym Finder helped me out. Except we're more like DSDD. Time to reprogram the meat computer!

(BTW, I saw you on that National Geo special. Nice legs!) Hey, maybe you'll go onto teach nursing (from your rocking chair, of course, that has to help the skeletal muscles pump the blood back up to the brain.) This is your student teaching op.

(If you haven't smiled, yet, forget slipping, the cheese is on the floor. It committed suicide and the cracker is crying.)

It could be worse. You could be the lab tech who examines the 24 hour urine catch.

Well, Sadfrustratedimpatientsleepyirritatedcuriousfed-upambitiousandsyncopalLulu, do you honestly think you're in any frame of mind to be questioning all the meds? :) I mean, you're going up against the big guns! You must be ambitious!! (BTW, I tried that with the Wellbutrin, but I got put in my place by a Dr. G order for it. :slinks away and shuts up:)

Thanks for trying to cheer us up at the end, you're a trooper! Hey, we can take your diatribe and raise you one:

When we remember that we are all mad, the mysteries disappear and life stands explained. ~ Mark Twain

The way it is now, the asylums can hold the sane people but if we tried to shut up the insane we would run out of building materials. ~ Mark Twain

Remember: If your time ain't come not even a doctor can kill you. ~ American Proverb

Nature, time and patience are the three great physicians. ~ H. G. Bohn

I personally think we developed language because of our deep inner need to complain. ~ Jane Wagner

There ought to be a room in every house to swear in. It's dangerous to have to repress an emotion like that. ~ Mark Twain

The idea that no gentleman ever swears is all wrong. He can swear and still be a gentleman if he does it in a nice and benevolent and affectionate way. - Mark Twain

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