Name: Susie
WTF Update: Both Fleas and Ticks
I want to try to make this short and boring, rather than long and boring. Unnecessary sentences like this one and the one preceding it won't help much with that intention, will they? Nor will rhetorical questions like that one.
OK. I saw the endocrine doc on Wednesday. This was veeeeeery interesting, because even though I had been taking 50,000 IUs of Vitamin D per week for 6 weeks, in addition to supplementation for the previous 5 months, my D level had not come up at all. In fact, it had gone down slightly. Weird. She is doing some research and ordering more tests. I picked up an orange gallon jug today in which I will pee for 24 hours, for her. You might not have needed to know that. But if I fill it up, I will be unable to resist sharing that with you. There might be photos.
So then, the New Rollogist that moved me from Passover to Good Friday, called up on no-name Wednesday, to move me again, to Holy Thursday. So I saw him yesterday. Overall, that visit was encouraging and frustrating at the same time. There were some tears. It was kinda rough on me, too. I told him the symptoms that had appeared since I last saw him -- rather violent muscle twitching, aspirating liquids, pain in arms, in addition to all the previous symptoms. He says that he does not know what is wrong with me, but that he believes it is not ALF. He says that although the symptoms are consistent with ALF, he has seen me for some 8 months now, and he believes if it were ALF, I would be more disabled than I am. (And truly, I am not disabled. Some things are difficult for me, but I can do them. Everything I really need to do, I manage to do.) Still, he wants me to have the EMG, and I have agreed to do that. Next week. Friday the thirteenth. I'm brave like that.
I had compiled a list of "ALF mimic" disorders that I took in, and went through with him. Most of them, he has tested me for. Some, e.g., Lyme disease, he agreed to test again. Those of you who wrote to me about the various kinds of myositis, he's testing for those again, too. I told him my metal poisoning theories. I think he rolled his eyes. I told him I know he doesn't believe me, but would he please humor me and order the tests. He said that he likes to humor me, so he will. I don't dislike the man. I'm not sure why that is, but I don't. Then I told him about the Vitamin D mystery, and asked him if that could be related to any of the things we were talking about. He said he didn't know how a D deficiency could do to me what's happening. Then he went into a barrage of Dr. Philisms, most of which went in one ear and out the other. I do remember one, though, "The same dog can have both ticks and fleas." This means that I could have WTF plus a Vitamin D deficiency, without the two being related. I remembered that one, because Jif latched onto it as the outcome of the meeting, reminding me several times since then, "You have both ticks and fleas." He's sensitive like that.
So, I have no diagnosis and no treatment, and feel pretty crappy, over all. But I do have an allegedly bright doctor who was once an ALF researcher, telling me that he doesn't think I have it now. So that is good. Very good, really. Next, I have lots more blood tests, peeing in an orange jug, and the torture test next week. I'll let you know when there's news. Thank you so very much for your kindness and your prayers, and your sticking around for this yucky, boring medical stuff. When this is over, I promise I'll stop posting medical stuff, and I'll write moving, fascinating, hilarious posts . . . or maybe just go back to putting eyeglasses on my dog's butt.
posted by Susie | 5:48 PM
30 heads are better than one . . .
"But I do have an allegedly bright doctor who was once an ALF researcher, telling me that he doesn't think I have it now."
I like that "allegedly" part. Makes up for saying you have both fleas and ticks.
I am taking his statement that you don't have ALF as a GREAT sign. Now if he'd just hurry and say what you DO have, that'd be just peachy.
Thanks for the update!
The medical stuff is never boring, somehow I wish it were! Not ALF is great, still dealing with WTF is not great,I am happy the New Rollogist is humouring you and please Lord let there be an answer soon, one that has treatments and cures right behind it.
Well I already knew you didn't have ALF. But I sure as heck wish I knew what you have or don't have in that deficiency. I love you honey bunny and I am still praying.
Orange is my favourite colour. Seriously.
I guess this could be called one of those 'No News Is Good News'sorta things and all the doubt about ALF is good too. But, MAN!, more tests and stuff. That sucks. I am glad he is humouring you with your 'eye rolling' thoughts and ideas. He doesn't have to agree with you but he shouldn't dismiss you outright. The human body is weird and wonderful and you just never know...
Hey! I pee in a big plastic jug too! COOOOOOOOOLLLLLLLLLLLLLLL!
Now THAT'S something to look forward to! More glasses on your dogs butt!
Both ticks and fleas? Hmmm...have you heard the new Brad Paisley song "Ticks"? You might wanna go to his MySpace page and listen! hehehe...
I'm glad the bright (although allegedly so) rollogist thinks ALF is not your problem! Of course, with the eye rolling thing maybe he has ticks and fleas!
It is wonderful to "see" you today my friend. I wore my WTF shirt the other day and thought of you!
Sweetie, it's not boring so don't worry about that. Glad the alleged doctor says it's not ALF!
Please take a photo of the jug because I would like to see just how big this thing is, but don't worry, you can just take a photo of the 'before use' and call it good.
;)
Will keep my fingers crossed for you on the 13th.
xxx
I've had an EMG - and it really wasn't that bad. I was anticipating torture and got mild discomfort.
When he tests you again for Lyme, see if he is testing "both ways". I have no idea what I am talking about, but I have an acquaintance who had Lyme and tested consistently negative until he had an alternate test done.
I'm not bored either. But I am looking forward to fascinating pictures of the VBG butt in shades.
So do you squat over the orange jug and just hope you hit the target? Or do you get to use some sort of funnel?
Sorry to hear there are more icky tests in your future, but I'm glad they're willing to humor you with the ones you want too.
Hang in there . . . you're always in my prayers.
Next, I have lots more blood tests, peeing in an orange jug, and the torture test next week.
Golly, Soos. All I have going on next week is some committee meeting my boss volunteered me for and a haircut. Some people have all the fun.
Oh, and wow... fleas, ticks and booty flies? Maybe WTF can be treated with some sort of "no pest strip" wrap or something... ;)
LOL at CKelli!
Personally, I could hear jug-pissing talk allllll day.
But maybe that's just me.
Yesterday, I had my hands on a pee jug, too.
Ya see, about a month ago, my MisterDoF was in the ER for passing a kidney stone. He got admitted to the hospital, even. And the stone passed within 14 hours, which is MUCH better than the one he had in 1992 and the surgeon had to go in and pull it down and out.
Anyway, he came home with a bunch of stuff, and one was a urinal bottle. He tossed it under the sink in the bathroom, where it rested amongst the mess until I cleaned that area the other day.
I decided to put the bottle through the dishwasher, since everything else under the sink was getting cleaned, too.
As I was emptying the dishwasher, a friend of my son came into the kitchen.
What's that? umm, a pee bottle.
And you're taking it out of the dishwasher where it was with the very same dishes you eat from?
(I hadn't thought in that direction. I just wanted everything in the cabinet to be clean for awhile so I don't have to get in there again too soon)
Yes, but the detergent is quite strong, so we should be safe.
When I offered him cookies, he asked for a paper plate.
I hope as a joke.
Here's hoping your pee bottle brings forth much worthwhile information towards a quick diagnosis.
Dude. I'm thinking I need to send Gregory House to come see you. Aside from being hot, the dude always has the answers.
*sorry*
WTF sucks. I did that for a while, but mine was caught. I am actually kind of grateful to know what the dealio was because I was wondering why I felt like crap for so long.
prayers and hugs to ya.
Hee! My word verification is "limpa". I want to say "Yeah, but she's not a whine-a, ya bastahd!"
So, a polite golf clap for the qualified "probably not", and here's hoping all the peeing in jugs will work out. I've heard of girls who want ya to pee ON their jugs, but this doesn't sound like the same thing.
Peeing in a jug sounds delightful. Have they considered mercury poisoning? A woman I work with (a physician, actualy) had mercury poisoning (in her case it was due to daily seafood) and had some of the same symptoms you do. It's one of those things that a lot of physicians don't believe exist (like Chronic Fatigue Syndrome), but it does. Might be worth the question! Best of luck. Glad you're keeping us up to date.
Keep making the doctor listen. Tell him that you are here to make him a better doctor.
Let him know there a a ton of people that love you and are praying for you and him to make it to the Journal of Medicine with his astounding diagnosis and cure.
Mostly just wanted to stop by and say an early Happy Easter. Sounds like your doctor is a good one - someone else said it but keep making him listen and keep being an advocate for yourself. It can be exhausting but it is so necessary. Hugs and Prayers
Funny how whenever one is afraid of putting anything even vaguely scatological in a post, it's always the first thing everybody comments on, ha, ha. I liked Mrs. DoF's dishwasher episode.
Now, that is very good news that the doctor thinks it can't be ALF. And you can tell him for me that he needn't smirk at the metal poisoning test, because that could just be the tick or the flea that's making you sick. In fact, if I were in your shoes, I think I would probably check out every possible environmental factor, regardless of how remote it seemed. (I'm sure you already have, though; just trying to be useful when I feel useless to do anything.)
Keep us tuned in, sweetie. Friday the 13th could be your lucky day, eh? Take care.
P.S. I never knew that was the dog's derriere in your masthead. LOL!!!
Friday the 13th AND a jug o' pee! Our cup runneth over (no pun intended). Now WHEN will you ever have the opportunity/excuse to post a photo of a whole gallon of one's very own pee?? Some guy did something similar, put it on exhibit in a big art museum, called it art and got tons of publicity. I say go for it!
Gee, I just came by to say "I'm BAAA-aack", and to wish you a happy Easter weekend, and lookie here: not one, but THREE posts since I left! So, if I leave again, will you post more?? ;) I think CK's onto something with the NO-PEST Strip thing -- why don't you run THAT by your New Rollogist and see what he says? *heh* I'm grateful there's progress being made, even if only to rule-out remote possibilities! Leave no stoner unturned!! Oh, I meant "stone" but it's kinda funny the way it is, so I'm leaving it. Love you -- can't wait to see you actually post your orange "juice" jug.
not only do you have booty-flies, but you also have ticks and fleas? wow--I think you need an entomologist not a new-rollogist...teeheehee!
Glad the Alien Life Form isn't the cause....
Hugs! I'm glad this doc is humouring you...I like him a bit too, except for the fleas and ticks thing...
xxoo
(teehee--when holding a fidgety baby and typing, the "xxoo" almost became "zzoo")
darn it--ck beatme to my joke...
think about it though--ticks really do give lyme disease though...creepy...
There are tears in my eyes because of his belief that it isn't ALF. Oh, Susie, that's what we've wanted to hear. (I say 'we' like I'm a part of this, which I'm not. Except I am, in that I care about you.)
You are brave to do the EMG, Friday the 13th or not. I will be thinking and thinking and thinking about you that day. And every day, as has become my habit.
Hugs. And hope!
soozieq, that would be peachy. btw, your dog going nuts with the broom makes my dog go nuts. I had to get out of there without leaving a comment. Someday I'll video the various things that drive Biscuit crazy. It ain't pretty.
t.o.m., that's what I want, treatments and cures. Or miraculous healing. Either/or. I'm easy like that :)
nina, thank you. I love you, too. The whole deficiency thing is very weird, but I think the endocrine doc is wonderful. She's already contacting all my other docs, asking them questions, which delights me, but probably annoys the crap outta them. Do I care? (No.)
kranki, well, even so, I'm not sending it to you. I'd do a lot of things for you, but not that. The human body is more complex than the most imaginative of us can imagine, I think.
mrB, but is it ORANGE? Hmm? No.
traci, I don't think I know that song. I may have both ticks and tics.
MoDis, for you, I will take a picture of the orange jug.
oddmix, the only part that I dread is the needle in, and the shocking of, my tongue. If you tell me they did that to you and it was mildly uncomfortable . . . that would be good. I think that's gonna hurt like a mofo. Indeed, the neuro said so, and in my experience, when I doc tells you something's going to hurt, that's a serious understatement. I hope you're right.
shawkey, I'm going to start on Monday morning, because it has to be everything for 24 hours, and I can stay home during that time. I expect I'll use a cup and pour it into the jug. Peeing in an orange jug just makes for a better story ;)
ck, excellent idea. That will be my Easter outfit. No pest strips wrapped 'round and 'round.
bucky, yep, that's just you :)
mrsDoF, I'm just impressed that you're cleaning out your cupboards.
deb, thanks, honey. Some of my docs have actually tried to refer me to House. The not knowing is tough. But not as tough as knowing some (one) of the things that have been suggested. I think nothing would be tougher than that. I'm increasingly optimistic that we're going to leave that possibility behind, soon, though.
nilbo, no, this is different. There are whole websites about that other kind of jug-peeing, though. I mean, I would imagine that there are.
The golf clap is a very appropriate response. That's how I feel. Not WOO-HOO yet, but . . . yes, OK, very good, then.
sandi, thank you, and yes, one of the tests I have an order for now is a lot of metals, and mercury should be covered. And yes, I now know that many people believe they have mercury poisoning and many (but not all) docs believe there is no such thing.
jeannie, I think I'll just print out your comment and take it to him ;)
michelle, happy Easter to you, too. I am trying to be more assertive; it's tough when you feel so lousy, but clearly, I have to rise to the occasion.
ortizzle, yep, you're right. Whatever this is, it's not something that immediately comes to mind for anyone. It's something more obscure, more elusive, so I do have to ask them about everything that I (or anyone else) thinks of, hears of.
htgt, oh, yea, I remember that. Maybe if I post pix on here I can get a grant from the NEA :)
eclectic, and now it's FOUR! Just put up a bunnycake. I like the idea of leaving no stoner unturned. They need turning every now and then.
effie, I think zzoo would be very appropriate, considering all the critters with which I appear to be infested! ;)
kalki, thank you, sweetie. That means a lot to me. xxx
*heh heh* Nilbo has the golf clap.
:::giggles:::
So glad to read that this ticks n fleas fella doesn't think it's ALF!
Hang in there, darling Susie. We've all got a candle in the window for ya.
Constantly praying and keeping my fingers crossed for you, dearie.
Love, hugs, and blessings.
How can you say this was a boring post when we all learned "you can have ticks and fleas at the same time"? How did I live this long and not know that??????? I'm just sayin' that's a critical piece of life's knowledge and I learned it from you!
Thanks, and I'll continue to pray. Good luck on the horrible test upcoming.
Well, dang...not a boring post, but I was scrolling through the archives to see if someone had given a real medical name to WTF. Apparently not. meh.
and LOL @ "New Rollogist" - I bet mine would hate me for calling him that ;)
The video of my dog probably upsets Biscuit because he doesn't like seeing his "own kind" acting like that. It's embarrassing....yes even to a dog who wears glasses on his ass ;-)
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