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Old 05-29-2014, 12:47 AM   #2056
mommasita
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All.. Sorry I have been MIA..

DH came home saying he needed a vacation desperately.. SO, we went on a a quickie to Vegas.. My Dad stayed here.. We left early last Monday, and came back Friday.. FIRST TIME EVER going anywhere without the kids.. My best friend and her boyfriend came also.. Hotel was free from Myvegas I play on Facebook, and we fly basically the same, so a cheapie, quickie,and just lay out by the pool.. He has been working 6 days a week, and doing the renovations at night, so it caught up to him.. The only thing we did was rent a car and see the hoover dam, not much walking, and some shopping ... It was their first time, so we let them do their thing.. Now we are back to finishing up things..

Still waiting on my son's marks .. They should arrive soon.. My hip is VERY bad, my ankle is actually doing better. I see my Dr June 3rd, and the shot did absolutely nothing.. Very sad about that..

SeaSpray: So sorry to hear about your psychologist, by goodness that is quick..... I have heard the same about being denied, and also hiring a lawyer? It gets better results?
How was your son's interview?
to you

rosanab1031: Please don't apologize.. I totally understand, MORE than you know.. I wish I had the answer, but I simply don't. I wish they did get it, invisibly illness is just that.. invisible.. Compassion is totally needed. My husband is slightly better. Not enough, but getting there.. There is no mind over matter.. If you can afford it, and are happy, then honestly I would hire someone, totally none of my business of course, just putting that out there.. If all else is good with the two of you, your days and left over energy would make you a happier person .. tell me to mind my own, It is ok.. I hope you have a fabulous trip!!!!!!!!!!!!!!

That picture is amazing isn't it? It hurts to look at

Gentle hugs
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Old 06-02-2014, 08:41 AM   #2057
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Another downer is my bf just doesn't seem to get fibromyalgia and he keeps comparing me to his lazy mother who stopped woking at age 23 and has been living with her mother ever since. Um... I'm 26, work full time, and go to school part time. How the heck are we even close to comprable? UGH! It's been really bothersome not having people around me who understand. I'm really sick of hearing "mind over matter". Sorry but it doesn't work that way! It does to a point for the pain but I am exhausted all the time. But i still get up and go to work and do all of my school stuff and help him with his! I really don't know what more he expects. I can't always get to the dishes or laundry but when he is at home more days than I am, why can't he do it? Yes I said I would do those things when we first moved in together but things change! I can't always stay on top of that stuff. I'm actually looking to hire someone to come in and clean the apartment. Someone has to step up and I think it's pretty obvious who but... it's not seen the same way.

:
My first time posting in this thread (I think ) but this raises a huge red flag for me. I've had fibro for many, many years (diagnosed 12 years ago at the age of 27 but had it well before then) and it's only gotten worse as far as pain level and what I'm able to do. If your fiancé isn't supportive now, I would be very scared of what happens when you get close to 40 (as I am now), when kids come along (if you want kids anyway), etc.

My dh is mostly supportive , but he has a philosophy of "working through the pain". Well, that's not my motto. In fact, if I were to try that, I'd be bedridden for a week. My dh does know all about pain though, as he has several disc problems and RA as well. His mother has fibro as well as a host of other problems, so he's been around pain for a long time.

Not trying to be all up in your business honey, but just wanted to offer advice. Hope I didn't offend.

To everyone else: hi! Sorry we have to be here. I currently only take advil and ultram for pain-but it's not even coming close to helping. I'm pretty anti-med, but I can tell that's going to have to change. I've tried Cymbalta (made me even more depressed) and lyrica-just didn't like it.

I currently work part time (2-12 hr shifts on the weekend) and homeschool my 2 kids. It's getting to be too much. Dh finally has a better paying job, so I'm hoping to go really part time by the end of the year. *fingers crossed* as that has been my goal for 10+ years-but I was always the bread winner until this year. My dream is to not have to work and just stay home w/ the kids and homeschool them, but I don't know that that will happen. The job will go before homeschooling goes.

Yesterday was very, very rough. Someone worked for me so I had big plans for my day off. Ha! I was barely able to move all day. Felt like I had the flu, although it was just the fibro rearing its ugly head. Feel a bit better today, but still in lots of pain.

Here's to a pain free day for every one.
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Old 06-03-2014, 01:17 AM   #2058
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Hi Chewysmom: I agree... I had mixed opinions and emotions posting what I did.. I am almost 45 with 2 teens, well one 15 and one 18, but I still stay teen ... My DH is pretty mixed, he won't say work through it, but won't help either.. LIKE EVER.. However, it doesn't bother him if we needed traffic lights in here, and until my our recent kitchen renovations, we always used paper plates.. but that really is due to my brain surgery, and long recovery.. So if that is ALL that comes between you, that is why I said it.. Having lived almost 20 married years, and I get that DH works 6 days a week, and the last thing he wants to do is housework, and if he ever did say a word to me, I would hit him with a 2x4..

I am VERY anti-meds myself.. I have a mother who is addicted to pain meds, so I don't think I give any an honest go... Cymbalta and Lyrica did nothing for me either.. I can never recall why.. I am on 100mg twice daily of Topamax for migraines , and this is helping that issue.. I actually have a Rheumy appt tomorrow at 8:45 am, hoping he can offer some help with my issues..

That seems like a heavy load with the homeschooling.. I hear you, the flu is EXACTLY what it feels like. Every fiber hurting.. I hope for an easier day for you..

Well folks.. Tomorrow I have the Rheumy.. NOT looking forward.. This was the follow up, and I have to tell him the cortisone did ZIP for the bursitis in the hip ... I don't know what to say.. I don't want any more medication.. I will just take it day by day, and see what he says..

Hugs everyone.. gentle ones
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Old 07-12-2014, 02:08 AM   #2059
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Hi, I am just joining in, I was directed to this forum after stating I was worried how I would cope with our trip to Disney and all the standing due to Fibro. I'm still trying to figure out how this will work
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Old 07-12-2014, 12:52 PM   #2060
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Talking with some ladies on another board it appears that there are quite a few of us with fibro--and I know others have posted on this board about it as well. I thought it might be good to share our ups and downs with this disease and new developments.

Welcome!

I was diagnosed about thirty years ago by a rheumatologist who was on the cutting edge of the disease. At that time it was called something else (which I can't recall) but he did the point test and told me I had it. I was re-diagnosed a year or so ago.

I also have OA so the medications I take for that seem to help the Fibro. I need more exercise (I know, I know) and when the weather changes I have a lot of pain.

What type of symptoms do you get and how do you relieve them?

Thanks for starting this thread for us fms people I've had fms and OA for several years too. I take tramadol 3 x day and alleve in the am. This helps but does not take the pain away. I might increase my tramadol to 5 or 6 a day while on vacation if needed. I started on a treadmill at the gym before our last WDW vacation and it really helped with the stamina and all that walking at WDW. I would suggest slowly walking more. I know it's hard to do, but just keep trying. It really helps I feel better in the mornings, so my hubby and I go to the parks early, then come back to the resort for a rest for a few hours. It I feel too bad to go back to a park in the pm, we just hang out at the resort. The best advise that works for me is to go back to your room and rest every day!!! You will probably never feel painfree, like me, but the rest period really helps. I tell my grandkids that gramma needs her nap time too. They think it is hilarious
Thanks again for this great thread and to all others who have posted
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Old 07-12-2014, 01:03 PM   #2061
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Smile hi toocherie

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Yep--that's me. Don't let it get you down but also deal with the challenges. And I do the same thing with the ECV--because experience has shown if I walk about the park all day I won't be able to move much the next day either-- and have been concerned that people think I'm faking--because I will drive to each major area and then walk around. I'm sure they're thinking--look at that fat lady on that scooter--she's too fat to walk around Disneyland. I am just WAITING for someone to actually say something to my face--I figure it's just a matter of time--and then I will pull up my capri leg and show then my surgery scars--LOL!! I am actually looking forward to our warm SoCal weather--little humidity--so I just feel better with the warmth and all--I sometimes use an electric blanket even in the summer just to keep myself warm.

(Of course, can't use it now that the new puppy chewed through the cord--oh yeah, need to get that fixed . . . . )

Glad you found us Nicole--wish you were local because Bridgette is moving out here and we're going to be celebrating her birthday at DL in July!

Hi toocherie: I know what you mean about feeling guilty somehow for having an invisible disease and wondering what other people are thinking when you get up to stretch and walk a little from your evc. I have just decided to do what I have to do to feel better, and let others think what they want. I would not wish this disease on anyone, but they need to walk a while in someone elses shoes. I park in handicapped with my sticker, and you would not believe the looks I get from some people. I look "normal", but if they could see all the places I hurt, then they would know how it feels. So hang in there, have fun, and ignore the ignorant people who look at you questionably
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Old 07-15-2014, 01:20 AM   #2062
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TulipsNZ and disneyseniors.

Normally this is more active, I think the summer tends to find people more busy.

I have to admit, I cruise, and hardly ever go to the parks, so don't have a lot of advice to give on that..

I used to take tramadol, and found it just a godsend. Sadly after my brain surgeries I can no longer take it ....

I think taking a break and going back to the room sounds like the best plan..

I understand you guys.. It isn't easy on most days with people.> I turned 45 Sunday, and to look at me you wouldn't know it, but man on the inside it isn't pretty.. Life is too short to worry about these negative nellies.. meh to them
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Old 07-15-2014, 02:10 AM   #2063
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Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.
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Old 07-15-2014, 02:11 AM   #2064
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I take low dose naltrexone and it's changed my life, I am so much better, I remember a month after starting it going for a walk with my family and spinning in circles in joy as I had not been able to do that in so long. I also take tramadol when it's bad and heat therapy. I'm also on cipramil for OCD. I just bought myself a cane chair for our upcoming Disney trip. I'm so excited.
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Old 07-15-2014, 02:15 AM   #2065
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Originally Posted by SpiritedHaunts View Post
Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.
Yes very similar, do you get nerve pain? I get skin creeping, it feels like someone has twisted the skin on my arms or whereever and they dragged me over nylon carpet. I never knew how much pain I was in until I was properly medicated and without it all the time. I said to my Dr that I thought I was just getting old, he said people in their 30's do not generally get out of bed and hobble in pain it's not normal. Anyway good luck and ask lots of questions it helps.
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Old 07-15-2014, 12:05 PM   #2066
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I take low dose naltrexone and it's changed my life, I am so much better, I remember a month after starting it going for a walk with my family and spinning in circles in joy as I had not been able to do that in so long. I also take tramadol when it's bad and heat therapy. I'm also on cipramil for OCD. I just bought myself a cane chair for our upcoming Disney trip. I'm so excited.
For those worried about addiction, naltrexone is pretty much the safest thing you can take. In normal doses, it's used to counteract narcotic overdoses. In the last decade or so, there's been more research on and use of low doses for pain control. They think it bonds the correct way to certain pain receptors to kinda break the patterns in reception that result from chronic pain (that's an overly simplified description, but I'm struggling to get my brain to be clearer). What you really can't do is take it at the same time as narcotics. It won't necessarily hurt you, but the narcotics won't do anything at normal doses because the receptors they'd normally bond to are being filled by the LDN. It's being used for fibro, MS, and quite a few other conditions that include chronic pain.

As far as I know, in the US low-dose naltrexone is only available using compounding pharmacies. That means you do need to find a doctor willing to work with one (preferably who already has a relationship with a compounding pharmacy) and insurance doesn't always cover compounded medications.

I haven't taken it, but the PP's experience is pretty close to the ones I read when researching to see if I wanted to try it. It either helps or doesn't particularly do anything. I'm sure there are side effects, but I can't remember hearing about any particularly horrible ones. I ended up not going for it, but I have more than fibro going on and it doesn't fit my needs.
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Old 07-16-2014, 02:44 AM   #2067
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Quote:
Originally Posted by SpiritedHaunts View Post
Does this sound similar?

We are now on to neurologist number two. She is tyring to get four part MRI with contrast ordered.

My father's aunt has been diagnosed with cryonic fatigue and fibro for several years now. She thinks that is our problem too, but no diagnose had been made here.

Fifteen years ago a neurologist found left temporal dischargement, some areas of non myleinonation, myotonic epilepsy and maybe other.

Fast forward to this year, neurologist, after an series if tests on muscles and non contrast brain MRI, has diagnosed nothing. Probably just 'depression' . 'Just need to take walks and get some sun.'

So, new neurologist, who is ordering full MRI with contrast and other possible tests like a spinal tap, seems to see that something is wrong. She asked a lot of questions and saw that my extremities were swollen. I looked normal, or so I thought, she even said I looked 'worn out'.

So symptom wise, there are headaches, tremors, random pains all over, muscle pain, muscle weekness, joint pain, muscle freezing and horrible 'spasms' that cause gut wrenching pain, physical jolts, and sleepless nights.

So, to all who have fibro, does this sound similar at all? We know something is very wrong and life as we knew it has stopped. Any ideas would be beneficial.
It honestly does sound familiar.. I suffered for far too many years as well.. One Neuro told me I was "fat and just lazy'.. I left that appt in tears driving home.. I honestly am not sure how I didn't get killed.. He was so obnoxious.. He told me that my Gp ordering a brain MRI was a waste of the Gov's money.. I told him it wasn't My call.. Fast forward to a few weeks later, and my Chiari Malformation was found.. I won't go into it..

I want to tell you to PLEASE not give up.. We don't have to suffer, we should not have to suffer.. The Doctor who was my godsend was my Rheumatologist.. He just listened for over an hour and said I think BESIDES Fibro, I think you have Sjogren's syndrome... It is a rare auto immune, and I tested positive, and he was spot on..

I also get nerve pain, the best I can explain is like someone lit a match to my skin, and is burning it... Winter is worse for me, so right now being summer the pain is somewhat less.. Heat and humidity do help, and doing less also..

Can you get another opinion?
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Old 07-16-2014, 03:01 PM   #2068
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My first time posting in this thread (I think ) but this raises a huge red flag for me. I've had fibro for many, many years (diagnosed 12 years ago at the age of 27 but had it well before then) and it's only gotten worse as far as pain level and what I'm able to do. If your fiancé isn't supportive now, I would be very scared of what happens when you get close to 40 (as I am now), when kids come along (if you want kids anyway), etc.

My dh is mostly supportive , but he has a philosophy of "working through the pain". Well, that's not my motto. In fact, if I were to try that, I'd be bedridden for a week. My dh does know all about pain though, as he has several disc problems and RA as well. His mother has fibro as well as a host of other problems, so he's been around pain for a long time.

Not trying to be all up in your business honey, but just wanted to offer advice. Hope I didn't offend.

To everyone else: hi! Sorry we have to be here. I currently only take advil and ultram for pain-but it's not even coming close to helping. I'm pretty anti-med, but I can tell that's going to have to change. I've tried Cymbalta (made me even more depressed) and lyrica-just didn't like it.

I currently work part time (2-12 hr shifts on the weekend) and homeschool my 2 kids. It's getting to be too much. Dh finally has a better paying job, so I'm hoping to go really part time by the end of the year. *fingers crossed* as that has been my goal for 10+ years-but I was always the bread winner until this year. My dream is to not have to work and just stay home w/ the kids and homeschool them, but I don't know that that will happen. The job will go before homeschooling goes.

Yesterday was very, very rough. Someone worked for me so I had big plans for my day off. Ha! I was barely able to move all day. Felt like I had the flu, although it was just the fibro rearing its ugly head. Feel a bit better today, but still in lots of pain.

Here's to a pain free day for every one.
HAHA! No worries about "being all up in my business". Lol

We actually had to have a really serious talk about it and he has been a lot better. He's even been giving more foot rubs. Lol! He definitely is a "work through the pain" type.

I have had such a busy summer!

My sister and I took our long over due trip to Europe. We had a great time! We did Italy and Paris. It was so nice. And of course we got to go to Disneyland Paris.

I started taking my classes for my esthetician license. I'm having a lot of fun

We still need to move and we just have not been able to find a place to take our 3 kitties I don't know what to do. The one place that we have found that will allow us to have 3 cats is out of our budget. We have successfully kept one of our kitties hidden in our current place, i just don't like being untruthful but to keep my kitties it seems like I will have to be. Getting rid of one is not an option.

Comic Con is next week! EEEEP! I have a lot of work to do! And then it's back to work August 6. Boo! Lol.
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Old 07-25-2014, 12:15 AM   #2069
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Thanks for replying. This neuro said that all the MRI results were clear. Meaning no MS or other horrible brain or spine issue.

She wants me to see a rumitist who deals in fibro as well and to get a lumbar puncture. She talked with my gp who wants to have an appointment to.

So, so far so good. She seems to think that there is a problem. White blood cells went up 2000pts over night and I was high on whatever marker there is for lupus.

I am hoping that the rumitist can be scheduled before the spinal tap, is one needed for a diagnosis of fibromyalgia? I'd like to avoid that one if needed.

We are planning a trip in September and may need a wheelchair or ecv, not sure which, for the first time. Tres nervous about that. Maybe looking into a DAS for the autoimmunity issues and crowd/loudness issues, if doable.

Thanks for being so nice. I am and will continue to ask questions. Still learning and diagnosing.

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Old 07-30-2014, 12:56 AM   #2070
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HI.. No spinal tap is needed to diagnosis Fibro.. It is really clinical..

A good Fibro is really what you need in my opinion, and what a blessing that can be..

Glad to hear your MRI's have been negative.. Hoping the Spinal Tap is..
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