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Old 06-01-2009, 11:43 PM   #91
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About the BBB -- Oh. My. Word. What are they thinking? Oh wait, they aren't. Okay, no more talking about that.

On a different note about Eamon (and his hair) . . . he has the most priceless expressions in so many of his pictures, and I love the color and texture of his hair.
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Old 06-01-2009, 11:54 PM   #92
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Thanks for the E comments. And yes he sprouted like a weed in his 4s!

And yes I let them spin. Or maybe that was the next time, I'm not totally sure. Hmm.

I do know that I still love the Ladybug Boogie, or whatever the heck that one's called in bug's land, b/c there's NO SPINNING! Well, no extra spinning. Also, we realized that that teacup/ladybug ride goes both ways, b/c it goes in a figure 8. So first you're spinning one way, then the next. But with the cups, you're just going one way the whole time. Bleargh.

Sorry, just had a pint and a half of Guinness at a pub with the guys and Robert's commute-husband (LOL...you know how some people have work spouses? he has a same sex commute spouse ) and his real life wife. The half was the last half of Robert's, and it's actually amazing I only got half! I figured I'd be getting 3/4 of his Guinness, if he made it past the first sip.
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Old 06-02-2009, 12:35 AM   #93
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Oh Molly! Thanks for the review on BBB. We will skip that for sure in October! I was rolling on the floor looking at E's hair and your comment. Oh my goodness! What are they thinking???

Regarding Concierge goodies: You ought to be able to pack your suitcase full when you leave, with the pricing, but water for the parks is a bare minimum. Sounds like you enjoyed it after all.

I also have challenges with my family following my guidance. I have finally let that go, and just plan longer trips to make sure we have enough time. It works for us.
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Old 06-02-2009, 12:55 AM   #94
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not trip related, serious stuff I'm finally talking about

Oh yes, the other update. So there's been this one other thing going on that has been freaking us out. I didn't want to talk about it until we knew what it was, and we found out today.

Robert, it turns out, has a (non cancerous) growth on his pituitary that is putting out prolactin. For those who don't know, that's the hormone produced in lactating women. While it exists in men, it is supposed to exist in teeny tiny amounts. In him, it's overtaking his whole being. And along with that, it has lowered his male hormones to just about zero.

Can you say...reason we haven't had another baby yet?


Now...this would be frustrating enough...but hubby has been trying to get someone to do this bloodwork for TWO YEARS. He has seen NDs and MDs, and they all want to focus on his weight, and blame any lack of fertility on his older wife. Our shared acupuncturist (in his old ND's office) wanted to blame it my extended nursing, even though I had seemingly been ready for more babies since E was 4 months old. No one cared about that, they cared about my age and OBVIOUSLY it was me. So they've been ignoring him.

He even had a cyst grow in his chest tissue, which led him to an even worse situation than the BBB situation with E. Can you imagine a man going to a clinic to have a mammogram? And have all the surroundings be pink, all the paperwork be female-focused? To be embarrassed beyond anything...? I felt so awful for him then. That was 2 years ago. 2 years. And they didn't do any bloodwork, didn't wonder "why". Just sent him for a 'gram to a male-un-friendly place.

And here's the worst with that...cancer in men, in that tissue? Is deadly. Why? Because it's found so dang late. Why is it found so late? Well, I believe that a big reason is that the clinics are all FEMALE focused! We know that women have different heart attacks than men, and it's been very important to make sure that MDs know that they present differently so that women can be saved...well why on earth are men being shunted over to girly clinics with girly paperwork where the men will be asked when their last cycles were etc etc, when it's so much more deadly* in men? It's AWFUL. (*sure more women die from it, but that's b/c more women get it...in the few men that get it, it's hard to survive, b/c it's found so late...that's how I'm calling it more deadly, b/c there are fewer male survivors if the numbers are evened)

Because of all that, he dropped out of their care regarding the cyst. Did anyone call? No. Did anyone write? No. Did anyone CARE that he didn't go back? No.

The cyst went away (during that time he went back to a healthier diet close to what he ate when he beat a brain tumor (benign but so fast-growing he was given 6 months to live by the same medical center where my liver transplant friend went...big center, big medical school, not hicks who make errors) without any western medicine, and for the chest thing he drank a TON of organic grape juice, b/c it has some sort of compound in it that shrinks tumors). He stopped thinking about it.

But he's been asking doctors to look into these problems he's been having...no one has been willing. They all want it to be MY fault.

His endo? He wasn't going to run the tests. But hubby insisted. I insisted. And the endo acquiesced, and ended up finding this non-cancerous growth on the pituitary. If he had refused, like all the rest have, who knows how much longer this would have gone on?


So this has a simple fix. He will take a drug (the only drugs available for his fast growing brain tumor in his 20s caused side effects that he felt were worse than death...it was also inoperable...that's why he refused western treatment then, b/c there was no treatment that he felt was acceptable....THIS drug, however, he feels is acceptable). It shrinks the tumor and the prolactin stops being made. This will allow his male hormones to be made again (and it's possible R will choose to have supplemental hormones to help with the baby stuff quicker, since I'm rapidly aging, LOL). It's all a very simple fix.

That could have been taken care of two years ago, IF we had any sort of competent health care around us....


So that official diagnosis was called in to me today (thankfully they are willing to talk to me since I know much more than hubby does AND I ask questions), after the poor dude had to have two MRIs in the last month.

Can you understand how courageous he's been? Interview after interview, being scared he was losing his job *and insurance*, while having MRIs done? The first was an Open MRI, but they couldn't visualize the pituitary (uh duh, of course not, his noggin is huge!). So he needed a closed MRI, but b/c of his size we had to go practically to Canada, the week before our trip. The endo was supposed to call us during our trip, but didn't (can you say scared that it was something other than the prolactinoma????). But he did, the fix is simple, and hubby will be back to normal quickly. The endo was saying 6 months to a year maybe even 2 years before it's all taken care of...but he doesn't know hubby's remarkable healing powers. Brain tumor gone. Diabetes? What diabetes? (as long as he watches his food) Cyst? Gone. etc etc.


oh, and the kicker is that usually when people have these, they are GAINING weight. Like 60 lbs in 6 months. Whereas hubby has been losing, slowly, for the last 2.5 years. And that is amazing. Once the levels of the hormone start decreasing, the weight that the hormone has caused to hang on will likely just slough off. And that will be wonderful. When he found out about the weight gain affect of prolactin, and realized that his sllooooooow weight loss was likely due to this, I felt the pride in himself swell. It just shows the willpower he has had, to have continued to lose, when others gain huge amounts of weight in small periods of time.


So there you go. Departmental closing causing him to search for work during this time of companies waiting for the perfect person while there are SO MANY job candidates roaming around, and a looming "pituitary adenoma".

Could these last two months have BEEN any more fun?????
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Old 06-02-2009, 10:39 AM   #95
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Wow. That's some hefty stress to deal with. I'm so glad that Robert was able to finally get a diagnosis. The road getting there, however, shouldn't have been so hard! You wonder why some doctors are doctors if they are unwilling to do the work to help their patients.
I've been dealing with a pituitary tumor (non-cancerous as pituitary tumors generally are) for the past year and half also. Mine is affecting adult growth hormone production. I see a pituitary specialist up at OHSU in Portland. She's really good. I had to do daily injections of gh for awhile but it was causing more trouble then fixing anything.
I hope your husband begins to feel better soon and that you are able to add a sibling for Eamon into your family.
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Old 06-02-2009, 11:05 AM   #96
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Wow, Molly. That's a lot for you guys to be going through. Lots of hugs and pixie dust for Robert.

We were sending lots of "have a baby soon" thoughts to you awhile back on the ladies thread.
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Old 06-02-2009, 11:59 AM   #97
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Quote:
Originally Posted by Daisybelle View Post
The road getting there, however, shouldn't have been so hard! You wonder why some doctors are doctors if they are unwilling to do the work to help their patients.


I've been dealing with a pituitary tumor (non-cancerous as pituitary tumors generally are) for the past year and half also. Mine is affecting adult growth hormone production. I see a pituitary specialist up at OHSU in Portland. She's really good. I had to do daily injections of gh for awhile but it was causing more trouble then fixing anything.
I agree about getting the diagnosis! I know firsthand that so many MDs (and even NDs, which I think has hurt me even more than the MDs) channel Alec Baldwin's "I am God" character from Malice...we run into so many of them for some reason. But this endo, even though he's kinda strange, was willing. He didn't expect to find anything (this is the same guy whose big ol' industrial "heavy person" scale was nearly 50 pounds OFF, and we went round and round for 5 minutes before he finally left the room and then calibrated the stupid scale. Hubby "lost" about 60 lbs since his visit in September, when we know he's only lost around 15 or less, b/c of the recalibration...so even he has a bit of "don't question me") but wowie he sure did!

It's good to know someone else with a similar growth. I'm sorry you're dealing with it, of course, but it's good to "know" you.

Quote:
Originally Posted by prettyprincessbelle View Post
We were sending lots of "have a baby soon" thoughts to you awhile back on the ladies thread.
Oh I know.


This endo...along with doing the bloodwork willingly that we requested, when he called me yesterday and he was asking about our fertility problems, he was talking about supplementation, but when I asked if it's 100% that R has no "swimmers", he said that it's possible he could be making some. So I asked if he should have a "swimmer" analysis done, to get a baseline, and the endocrinologist told me that that was an "excellent idea". Love him!

He's still freaked out that Robert went from a diagnosing blood sugar of almost 500 down to a normal of 98 (with very little post-meal fluctuation) without taking drugs... But I personally think that *maybe* R's pituitary being so out of whack caused his whole endocrine system to go crazy, and since insulin is part of that system...I think it's all related. Which is why I'd LOVE to find a holistic person to, well, not oversee, but to sort of look "down" on the whole thing, and really reason out the starting factor...so that we could figure out how to support Robert's own system to best heal him while the drug works to "cure" him. I would normally go to an ND for that, but as I mentioned, all the NDs we seem to find are just like MDs who want you to buy $500/month worth of supplements. Harumph.

ETA: I'm actually normally very good at that sort of thing...seeing the whole health picture and pinpointing where I feel it started...but with family, I'm too close. Perhaps some meditation could help, or a spa day...hey, there's that Mandara Spa, isn't there? At that little hotel I haven't stayed at? Bwa ha ha ha.....



I'll get back to my trip soon. All of this happened at once...we bought into DVC, using stock grants to start, our current salary (to finance), and FUTURE stock grants (to finish it up), then my friend had her liver transplant, then MIL went to the hospital, then April 2 the department was informed they were closing in 2 months, then he had his followup visit with the endocrinologist where he told him about his level of prolactin and the probable cause (and thank goodness it was what he thought, b/c it could have been something worse causing *pressure* on the gland, instead of it just being a pituitary growth)... Anyway, it all hit so fast and furious and I haven't really wanted to talk about it...now it's just all coming out. Where's a brain-exploding smilie????

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Old 06-02-2009, 02:45 PM   #98
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I swear I'll get back to the trip report. But for now I just wanted to report that hubby now has an email address for his new job. How EXCITING! Dream come true. We're barely going to see him this month though, and might be "forced" to go visit my brother (in San Diego, poor us! and my brother has insisted that we let him get tickets for us, double poor us!) so that he doesn't feel so guilty about working so hard. But he has to work hard to prove himself so that they extend the contract to at least a year!

Hmm...if E and I go to San Diego, I wonder where *else* we'll go....
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Old 06-02-2009, 05:59 PM   #99
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Molly, Wow talk about a roller coaster. I am so glad you finally got a DR to listen. I went through a similar situation where one DR finally listened. Oh how awful it would be to have to go to San Diego this time of year when the weather is so pretty.
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Old 06-03-2009, 02:37 AM   #100
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Opted to take out that particular freakout. Nevermind.



So in other news, I rode the SunWheel, er, Mickey Head Wheel, of Death during our trip. Was not fun! Though it was kinda funny...if we'd been alone I'm sure I would have been hyperventilating, but they put these two pre-teens in with us (really? two preteens in with an adult male (and female and 5 year old, but still, adult male) when you're stuck up there for 10 minutes? Really????? And yet people are asked for Toy Story if they're OK with a single rider next to them on a rapidly moving, easy to get help, ride? really????) and I felt like I needed to keep it together. Plus, the boy HATED the ride and the girl LOVED it, and she was absolutely tormenting him, and it was kinda hilarious. Must have been fun for R, E, and the girl, to watch me and the boy slowly turning green....

Oh, even though you're mainly still in the non-moving cars...you can easily get motion sick from watching the cars near you swinging and moving and swooshing wildly through the air! Uh oh, turning green just thinking of it....
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Old 06-03-2009, 11:34 AM   #101
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OK, wow, I was barely into E's b'day. Looking at my pictures...I took almost none that day! Crazy.

So we'd finished with his hair, and he was happy with sword and shield. On the way out, I asked a CM (who looked in charge, as she wasn't in costume) if BBB required tips, and she said they weren't allowed to take them but thank you for asking. I wasn't really wanting to tip, but also didn't want to faux pas entirely, ya know?

They let you out a side door, and at that point we needed to get his Birthday Fun Card. We were supposed to have done that (per the Plan) that morning, but we were late so opted to just take the monorail in, if you recall.

So we needed to get to City Hall! Hey look, there's a horse drawn carriage. We've never ridden (as a family, at least; I think I did on a solo trip) in one of those, let's go! Someone in the front of the carriage was wished a happy birthday, then the CM who said it noticed E's. He couldn't pronounce E's name so he asked...I answered, and then someone towards the front of the car turned around and asked "are you Molly?" It was boiseflyfisher, if my memory isn't failing me altogether! It was really neat, though brief. I felt bad for being un-animated, but we were tired and cranky, so I'm sorry bff (hey those are some good username initials!) that I didn't immediately move us to your row and talk your ear off. I wasn't up to par that day.

The trip was nice, the line at City Hall was long. For some reason they did not offer the Goofy call, and I forgot, whoops! The CM named Robert was astonished, b/c he'd already done 5 Birthday things that morning, and all of them were for that day (obviously) and that same year. Whoa.

OK I was going to take a picture of the funcard, but even though it was *right here* 5 minutes ago and nothing has changed on the table...I can't find it. Guess it's off with my phone! My phone, which is needed, b/c I *have to* call a nearby apartment complex to see if they have openings, b/c we *have to* move, which is so awful and rotten and I hate hate hate it. But it's necessary; it was thought of before, in a "wow we are spending just too much in housing even though it's not really impacting us" and now we really need to. Sigh. Guess our neighbor was almost right last year, when he said "hope you have a nice year here!"

So anyway, no pic of the funcard for now.

Well after going all the way to the front of the park, now that "Disneyland's birthday present" was in his hot little hands (or rather, my backpack), there was a desperate NEED to go on Star Tours in order to wind up in the giftshop.

And so we went! As usual, poor Cptn Rex. Shortly after, E had his Stormtrooper (or "strongtrooper", as he says it normally (though he CAN say it correctly, he just doesn't like to)) blaster. Joy oh joy! He'd seen it at 3.5 and he's been waiting to be 5, just to get it. Patience, thy name is Eamon. Sort of.

I totally expected that he would spend it all on that shopping visit, but he didn't. Just wanted the blaster. Amazing.


Now...in reading my notes, I think I got something in the notes a bit backwards. I definitely remember what I'm about to mention happening *before* Star Tours.

And in remembering this, I realize I stated something wrong earlier.

You see, other than coffee, I hadn't had anything to eat yet. Robert brought me something from the lounge, but it was a chocolate chip muffin of the sort I'd had at the DVC presentation on the Diva's trip, and it had that sort of *not actually GOOD, but addictive and kind of nasty* flavor. I brought it with me, but hadn't eaten it. Because it was still an option, I hadn't eaten a mojo bar.

So right before Star Tours, Molly had a tantrum. I was quiet about it, I promise, but I'm quite sure that the words "I don't think I like our trips anymore" were said to Robert. Thankfully I'm pretty sure he saw it for what it was (horribly low blood sugar plus exhaustion) and didn't react (whew).


So after the quick ST ride and shopping, we headed to DCA for some FOOD. What food? Wine Country Trattoria, of course!
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Old 06-03-2009, 12:25 PM   #102
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Isn't that crazy? That of all the places you could be in DLR, you just happened to get in a carriage with another DIS-er - and one who knew exactly who you were by your son's name?!! There is no more appropriate time and place to marvel, "It really IS a SMALL WORLD after all." I have yet to even see a telltale LGMH at DLR, let alone end up on a ride with someone who instantly knows who I am.

I didn't get a chance to check in on your TR yesterday, so I am late in commenting, but Robert sounds like a man of great inner strength and you are clearly a fantastic support system for him. Poor guy - he has so much to deal with health-wise, job-wise, and now you all have to move as well (which is always referred to as one of life's biggest stressors, even if you are just moving nearby)....sometimes things seem to just pile up all at once. I am sending lots of 'baby vibes' your way also!

I have never worked in the medical field directly, BUT I used to work at a medical transcription place where we had to type all of the medical and psych reports, not to mention that several of my friends are either working for health insurance companies, processing claims, or working as nurses in hospitals and clinics - and I have heard many stories over the years of various conditions and/or illnesses not being recognized/diagnosed early enough due to inept doctors, or not being diagnosed correctly (a BIG problem), or people not being able to have treatment due to lack of insurance, physicians and medical personnel just having a lack of compassion and sensitivity in general and all kinds of depressing stuff. In fact, we learned first hand in the medical transcription office how utterly disorganized most every medical office we dealt with was. Most of them had no clue what was happening, and the doctors in charge were either so tyrannical and megalomaniacal to hang on to any decent employees or too cheap to hire good ones - and so everything suffered because of it, I think, on the administrative side of things. I mean, it is scary. Many folks would be very ill at ease if they knew how chaotic, stressful and in disarray most of these doctors' offices we dealt with (and sometimes their personal lives too!!) were - oh, say, before they went in for surgery or something. It is really a shame and it is terrifying to be so reliant on a sytem that is so essential but often very screwed up.

So I am glad things seem to be on track for Robert now and that he is okay. But I cringed about him having to deal with a humilating 'female' process with the mammogram and the pink everywhere, etc. Yikes.
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Old 06-03-2009, 01:40 PM   #103
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That's so cool you saw another Dis'er. Especially because she recognized you by hearing Eamon's name!

They have Stormtrooper blaster? Holy moly. I need it. I had no idea they had one of those. We spent a good amount of time in that Star Wars area of the store too. I want a lightsaber too. A purple one. I have no idea why. Will I play with it? Probably not? But I want it. Maybe I'll get both the blaster and the lightsaber next time.
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Old 06-03-2009, 01:49 PM   #104
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Hi Sherry!


I finally found my wayward phone (and the fun card), and have made several calls in the last hour. Things are looking up, insurance wise (that's what my erased freakout was about...finding out the skyhigh spousal premiums for the insurance through the head hunter agency), at least b/c there seem to be options. Not as many options as in other states, as WA will not allow insurance companies to exclude preexisting conditions (yay!) and that made many insurers say "well forget it, we're taking our ball and going home" (boo, but understandable), but still, options.

I've seen the chaos of medical care while sitting with my friend with liver problems. She's always on opiates so she doesn't care, and she loves her care providers. But the people who are with her HATE what's going on. Right hand, left hand, left foot? No one knows what the others are doing. It's a problem. Hospitals are absolute chaos and it's hard to know just who is in charge.

I've started the process of requesting records for Robert...the visit about the chest thing (which I found might have even been a very rare, especially for men, "galactocele" that could have been a precursor, an early sign, of the prolactin thing) and the scan they did then. Also for the first ND he saw, where he did a ton of labwork (but nothing for the reproductive hormones). That guy would actually be a great "overseer", but I need to see the records, to see what he overlooked at that time, before we even think about Robert going back to him again.

I know I sound like a parent, but Robert really has no clue about all of this stuff, not really. And hey, I need to have some "jobs" around here, right?



Omg it's hot. If we do go to San Diego, we'll go there for the cool of June Gloom! hot hot hot. I don't like hot.



PPB!

Oh yes, a stormtrooper blaster. I hear it now, actually. They have them just to the left of the exit from the ride as you walk in...they are the first merchandise you could set your hands on, pretty much. They make two noises. And they make TSA agents nervous!
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Old 06-03-2009, 02:11 PM   #105
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Molly, I love that store just like E. It is one of the few shops I can tolerate. We usually bring my Mom with us, and she loves to shop. The last trip we took was for my Mom's 70 birthday, she seems now to only want to visit the shops and sit and watch everyone ride. I am losing my patience with that, sorry bad daughter I know. The trip we took for her birthday she spent her time either in her room at the DLH the whole day or just part of it. When she was with us she wanted me to sit with her while everyone else went on the rides. I wasn't happy, I wanted to go on the rides. Sorry rant over. But back to the point I have been in every shop at one point or another, and I tried last trip to not go in all of the stores and I actually preferred that.

I know all about taking care of DH and his medical needs. My DH Scotty gets lost when ever doing anything at all like that.
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Happy Birthday, Jennifer! (wellesleyprincess) deekaypee Events/Competition 5 04-29-2009 05:56 PM
is it worth going to the pepper market for CS if we aren't staying there? kha100399 Disney Restaurants 28 04-27-2009 05:49 AM

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