ABC's of Trip Planning (Oct 10-20), Vol. 2- Z is for: Zippidee Doo Dah!!!!!!!!!!!!!

[pkondz]

It makes me sad to even think about it.

Ditto. You've got a classic that's lasted almost 60 years.
What's next? Cinderella's castle becomes Wonder Woman's lair?

 

[Steppesister]

Ditto. You've got a classic that's lasted almost 60 years.
What's next? Cinderella's castle becomes Wonder Woman's lair?

Oh I saw a certain recent picture on someone's PTR (can't imagine whose it was...) of Wonder Woman. There was an exorbitant amount of emoji ogling if I recall. I wonder whose castle would actually get more foot traffic.

But your point is well taken.

 

[pkondz]

Oh I saw a certain recent picture on someone's PTR (can't imagine whose it was...) of Wonder Woman. There was an exorbitant amount of emoji ogling if I recall. I wonder whose castle would actually get more foot traffic.

But your point is well taken.

Well.... yeah.
I wouldn't mind if they had pictures of her plastered all over the castle.... but please let everyone know she's just visiting Cindy.

 

[Steppesister]

Well.... yeah.
I wouldn't mind if they had pictures of her plastered all over the castle.... but please let everyone know she's just visiting Cindy.

Of course you wouldn't. (Please don't touch the mosaics.)

 

[Chrystmasangel]

Isn't that the strangest thing you've heard this week?!

It is. I actually had to read it twice before it sank in. Amazes me sometimes the things people discover.


I have a nursey question for you...Do you know much about Infusion for RA peeps? Do you know peeps who have/are getting it? Is it working? How are they tolerating it?

I am going to "rant" for a few minutes here, so please humor me...

I was moved from a moderate to a Severe level for my RA last week. this is playing havoc with my mental health. Going through a lot of guilt right and feeling like a bit of a burden to my family. The methotrexate which I thought was doing good ended up not so good. It seems I was just having a "good week" when I thought it was working, because then it all blew up in my face. I have been having one of the worst flares that I have ever had over the past 5 weeks. I have not been able to work because my job requires typing for 8-9 hours a day and I can only do about 15-20 minutes of it and then my hands start to hurt so bad, I have to stop. When I went for my apt last week, the Doc was a bit shocked at how swollen my hands were. She said I looked like I removed the Incredible Hulks hands and replaced mine with his. Up until this last visit, always seemed like when I would go in to the doc, the swelling was pretty well controlled. This was the first they had actually seen them at their worst and what I was dealing with. They say it takes any where from 6 weeks to 3 months before Methotrexate really shows if it will work or not ( I have been on it for 7 weeks now), but when they saw what I was dealing with, they decided that they were NOT going to wait out the full 3 months. If I didn't see any improvement in a max of 2 weeks, they were going to look at Infusion. They already did blood work, chest x-ray, and TB test to prepare for Infusion and I am waiting for a call because they want to repeat MRI's on my hands and are getting approval from the insurance company. Once all that is done, I will be starting the infusions. My first apt is 10/14 for it unless something comes back on the tests that would prevent it. I have to admit it has been a VERY rough month for me. I think it may be finally sinking in that this is something that I am going to be dealing with the rest of my life. Infusion is scaring the crap out of me. I am such a hard stick for blood work let alone IVs... Those are a nightmare even with the Ultrasound machines they use now. I have been discussing doing a port-a-cath, but am afraid that I will go through all of that and then the infusion won't work either and then it will be all for null, but I keep going back to DREADING the IV's for the infusions. I also am having horrid memories of the only other experience I have had with IV drip drugs and that was my chemo and I know they are not the same, but, when I read all the material on the 3 medications they are considering,(Humira, Remicade,Rituxan) and 2 of the 3 seem to be used to treat cancer as well, my mind keeps slipping into this mad circle that it will be like chemo. Is it really worth it?

Am really trying to find people who are experiencing this or know people who are. Wanting to hear if people are having success with infusion and what quality of life,if any, it returns them to. I know no one personally who has experienced this and in truth, until they started talking to me about it, didn't even know what it was or that it was a treatment for RA. Trying to find some peace of mind that even trying it is worth the pain of the IV.

 

[pkondz]

(Please don't touch the mosaics.)

You're taking all the fun out of it.

 

[pkondz]

An addendum to TOT.
Just read through Rolling Stone's list of 100 Greatest TV Shows of all Time.
#7 Twilight Zone.

 

[DISNEYMOON10121991]

9 days to go! I can start counting on fingers now
Doing the 5 more working days countdown too....I have one more Saturday, one more Monday etc.
Hoping to get a few things done today on my day off.
I'm such a procrastinator. Always having high hopes that I will get things done, but my mind gets overwhelm with WHAT should I do first/next/need to/dread to that I feel I get nothing done. I eventually do, so any thing off the list is a victory I guess. Sometimes it feels like a wish list and you can't always get what you want.

So exciting that your daughter is going! Hope the early pixie dust continue through your vacation. Sounds like her coming will bring you trip to a whole other level of fun. We're hoping someday to go back with our kids again too.
Glad your bands came. Actually our luggage tags came before bands. Actually they almost didn't. Probably only about a little over a month ago I read something online an then the "light bulb" came on, Hello...if you want Magical Express, you have to tell Disney that you're flying in!! Made my ME "reservation" and gave them flight info, then got the tags a week or so later. Whew!

I really have to starting planning clothes, I like the idea of putting outfits in a bag. This might help me not accidently wear something that should be used with something else. I had gotten some new capris for this trip but never worn any so I hadn't planned tops yet. I would say they are "odd" colors to plan with (sea foam green like, coral like, teal) so nothing in closet expect solid plain colors and black tops seem to work. Went shopping last week and found some prints that could work, but only for a certain color, that's why I might bag somethings together so I get the right combo of outfits. Of course, my 19 yr old daughter (my fashion police) might help. We haven't seen her since she went back to school early Aug. and she will be home the weekend we leave to "see us off." She might not like that I bought new shoes (got to start breaking in today!) because earlier she talked me into a different pair. I wear black Skechers to work. I hate buying shoes! So I figure an easy idea is to get the same kind, just all white. It will go with everything. Nope. Her comment (don't be offended) "They look like nurse's shoes" So plain white was out and I got something else, just not sure if their comfortable.

One more subject and then I got to get my day going. I've been closely following the ROL rumors too. Kind of check every day to see if anything changes. I heard the possible of Oct 16 too. I was hoping it would be a "starting" date because we have an AK day planned on the 17th. It would be nice. Bring that pixie dust with you!

 

[franandaj]

Am really trying to find people who are experiencing this or know people who are.

My spouse has incredibly severe RA and has since 1998. She has been on every single RA drug that has been released since then including all those you mentioned.

Every one of them gave her great relief, for a time. Then it either stoped working or caused her liver readings to go through the roof. She has tried Enbrel, Humira, Remicade, Orrencia, Arava, Plaquenil, and at least five others I can't remember, most have been infusion based. However her current drug is Xeljanz (a twice daily pill) which has been working well for her, but the problem with that one is that you need a small fortune in reserve as the first couple months (before the deductible kicks in) run around $1200. After a couple months it's only about $160 per month. That's with Medicare.

Any of the infusion based drugs did a million times better than Methotrexate. In fact I'm not sure that Methotrexate ever did much of anything for her.

 

[Steppesister]

Another long work day about to start, so responses will have to wait until Saturday, as our neighbor's have invited us to a fish fry tonight. They've been busy catching a TON of steelhead on the Deschutes this week and we're happy to "celebrate" with them. Have an amazing day, All.

 

[Chrystmasangel]

My spouse has incredibly severe RA and has since 1998. She has been on every single RA drug that has been released since then including all those you mentioned.

Every one of them gave her great relief, for a time. Then it either stoped working or caused her liver readings to go through the roof. She has tried Enbrel, Humira, Remicade, Orrencia, Arava, Plaquenil, and at least five others I can't remember, most have been infusion based. However her current drug is Xeljanz (a twice daily pill) which has been working well for her, but the problem with that one is that you need a small fortune in reserve as the first couple months (before the deductible kicks in) run around $1200. After a couple months it's only about $160 per month. That's with Medicare.

Any of the infusion based drugs did a million times better than Methotrexate. In fact I'm not sure that Methotrexate ever did much of anything for her.

Thank you so very much for sharing this with me. You just can't imagine (or maybe you can!) how just knowing I am not alone in this helps settle the nerves. I know no one who has / are dealing with this (thank goodness for that!) so I don't have anyone who truly understands what I am going through or that can give me information.

I (well while I still have a job anyway) have very good insurance so that is no worry. For medications I have no deductible and for generics I pay $12 and for non-generics or newer medications I pay $45. All preventive procedures and mental/addiction issues are covered 100% and all other stuff is 90/10 coverage with no deductible. Yes there are expenses but not much. This insurance is why I am fighting so hard to stay working.

A lot of the medications they use to treat this stuff is off limits to me because of having gastric bypass surgery. I am still currently on plaquenel along with the methotrexate. In the past we have tried Celebrex. I was started on a low dose and did ok with it. I started to see some relief, but when they increased my dosage the next day I broke out in hives. They said it took the higher dose to put enough into my system to have an allergic reaction. Next was Symbalta. I took my first dose of this before I went to bed... When I woke up the next morning I was a mess. I couldn't take 2 steps without completely falling over. My husband would say something to me and I could hear him talking but the medication messed my mind up so bad I couldn't process what he was saying to me. They lowered my dose and it became tolerable but I was still having memory problems. I would lose complete conversations within moments of having them. After 1 week I decided the potential benefits just weren't worth the side effects. I have had many Injections of dexamethasone and kenalog. Those at first seemed to help on a short term basis but the past 2 I have had really had no benefits. I was on long term prednisone and again at first it seemed to help, but has gradually become non effective. They just switched me to medrol and I have been taking that for 1 week but not seeing much from it either. I also have Ultram for pain. I have taken it long enough now that it is starting to become less effective as well. I hate to look at stronger pain meds because they don't just make me tired... They knock me out. Ultram has been the only pain med that hasn't caused me to fall right to sleep. It has never completely taken the pain away but it has made it tolerable. l think a lot of my fear for infusion is that it will work for a short time but then become ineffective like your spouse. Is the outpatient surgery to have a port put in worth a short period of relief? With as difficult as it is to start an IV on me... There is no way I can do this with out a cath.

 

[Chrystmasangel]

Isn't it single digits dance time???

 

[franandaj]

A lot of the medications they use to treat this stuff is off limits to me because of having gastric bypass surgery.

I have no idea about this one, and I'm not sure about the "port" either. Fran's vein are motivated bad and would just have them put an IV in and she would sit and read a book or maybe even fall asleep. I used to go sit with her as she needed a "pull" to get up our of the chair after sitting in it for a few hours. She did have a port once, but that was when she was getting daily infusions for MRSA. It was a 30 day treatment.

She also takes heavy duty pain meds. In her aresenal she has Percocet 10-325 and Norco 10. She also has morphine (immediate and extended) release, but those tend to make her loopy so she doesn't take that when she has an effective RA medication. The current prescription is from about a year and a half ago when she was "between" medications.

I hope you can get some relief. Perhaps the Xeljanz might be an option for you since the infusions are not such a great deal with your potential vein issues. If your insurance will cover it, that's awesome!

She has been on Disability for about five years and should have applied sooner. We are self employed so it didn't change much other than she gets a monthly (small) payment and was eligible for Medicare after two years.

 

[franandaj]

Yay Liesa!

We are goin' to Disney this month!!!!!

 

[KathyM2]

I'm sooo excited for you!!! I just can't believe after all this planning and analyzing...it is finally almost here!!!

 

[mom3sonstt]

Just in time for our visit Disney has increased DVC and AP discounts at some of their restaurants and stores!

 

[Steppesister]

Just in time for our visit Disney has increased DVC and AP discounts at some of their restaurants and stores!

Of course they have.

 

[Steppesister]

It is. I actually had to read it twice before it sank in. Amazes me sometimes the things people discover.

I"m sure more research will follow; it'll be interesting to see where that leads!

I have a nursey question for you...Do you know much about Infusion for RA peeps? Do you know peeps who have/are getting it? Is it working? How are they tolerating it?

I am going to "rant" for a few minutes here, so please humor me...

I was moved from a moderate to a Severe level for my RA last week. this is playing havoc with my mental health. Going through a lot of guilt right and feeling like a bit of a burden to my family. The methotrexate which I thought was doing good ended up not so good. It seems I was just having a "good week" when I thought it was working, because then it all blew up in my face. I have been having one of the worst flares that I have ever had over the past 5 weeks. I have not been able to work because my job requires typing for 8-9 hours a day and I can only do about 15-20 minutes of it and then my hands start to hurt so bad, I have to stop. When I went for my apt last week, the Doc was a bit shocked at how swollen my hands were. She said I looked like I removed the Incredible Hulks hands and replaced mine with his. Up until this last visit, always seemed like when I would go in to the doc, the swelling was pretty well controlled. This was the first they had actually seen them at their worst and what I was dealing with. They say it takes any where from 6 weeks to 3 months before Methotrexate really shows if it will work or not ( I have been on it for 7 weeks now), but when they saw what I was dealing with, they decided that they were NOT going to wait out the full 3 months. If I didn't see any improvement in a max of 2 weeks, they were going to look at Infusion. They already did blood work, chest x-ray, and TB test to prepare for Infusion and I am waiting for a call because they want to repeat MRI's on my hands and are getting approval from the insurance company. Once all that is done, I will be starting the infusions. My first apt is 10/14 for it unless something comes back on the tests that would prevent it. I have to admit it has been a VERY rough month for me. I think it may be finally sinking in that this is something that I am going to be dealing with the rest of my life. Infusion is scaring the crap out of me. I am such a hard stick for blood work let alone IVs... Those are a nightmare even with the Ultrasound machines they use now. I have been discussing doing a port-a-cath, but am afraid that I will go through all of that and then the infusion won't work either and then it will be all for null, but I keep going back to DREADING the IV's for the infusions. I also am having horrid memories of the only other experience I have had with IV drip drugs and that was my chemo and I know they are not the same, but, when I read all the material on the 3 medications they are considering,(Humira, Remicade,Rituxan) and 2 of the 3 seem to be used to treat cancer as well, my mind keeps slipping into this mad circle that it will be like chemo. Is it really worth it?

Am really trying to find people who are experiencing this or know people who are. Wanting to hear if people are having success with infusion and what quality of life,if any, it returns them to. I know no one personally who has experienced this and in truth, until they started talking to me about it, didn't even know what it was or that it was a treatment for RA. Trying to find some peace of mind that even trying it is worth the pain of the IV.

Aww, Jenn, I'm so sorry to hear that you've really been struggling. RA is such a hard chronic disease compounded that so many struggle also with guilt like you describe. I really don't know a lot of about the various treatment modalities, but do know that it seems like every person has a very unique regimen that works for them and they "cocktails" are very specific and individualized. I know a lot of people with Ports for infusion, mostly for chemo drugs like you mention, because those can be VERY caustic on the veins. They, of course, have the advantage of eliminating IV sticks over and over. No, there is no guarantee that after you get one placed the meds will work, but I think I'd give it a try. It really opens so many more options to you.

But more than that, I think I'd encourage you to let the guilt go!!! Let it GO!!! You cannot control that this is happening and trying to live up to everyone's expectations and judgement will only serve to keep you from focusing 100% on getting better. Stress has been proven over and over to impede drugs from working.

I'm SO glad Alison could offer some insights with Fran's experience with RA and the things she's tried. She knows a LOT more than I do, but we are ALL here to encourage you and listen to your progress as you feel you'd like to share!!

 

[franandaj]

l think a lot of my fear for infusion is that it will work for a short time but then become ineffective like your spouse. Is the outpatient surgery to have a port put in worth a short period of relief? With as difficult as it is to start an IV on me... There is no way I can do this with out a cath.

I just remembered the one that worked the best for a long time. She started Actemera in December of 2008 and it worked all the way up until November of 2014 when she started to get fatty liver readings and they had to take her off of it. After that she had six months of no RA meds or limited RA meds, and in May of 2015 is when she started the Xeljanz. The Actemera was a once a month infusion, so I'm not sure you would want to have a something put in you for a once a month infusion. Are you talking about a Pik line? It was driving me crazy that I couldn't remember the name of that drug so I looked through all her "medication lists" that I have in a folder on my computer, and finally found it.

 

[Steppesister]

You're taking all the fun out of it.

Disney does that all the time. Case in point: No crazy dancing on the WEDWay.

An addendum to TOT.
Just read through Rolling Stone's list of 100 Greatest TV Shows of all Time.
#7 Twilight Zone.

They used to air a Twilight Zone marathon every Thanksgiving Day when I was growing up. I spent most of the day watching those because it was more fun than standing around eating Clam Dip and Chips.

9 days to go! I can start counting on fingers now
Doing the 5 more working days countdown too....I have one more Saturday, one more Monday etc.
Hoping to get a few things done today on my day off.
I'm such a procrastinator. Always having high hopes that I will get things done, but my mind gets overwhelm with WHAT should I do first/next/need to/dread to that I feel I get nothing done. I eventually do, so any thing off the list is a victory I guess. Sometimes it feels like a wish list and you can't always get what you want.

I leave for the airport 1 week from tomorrow- so actually in 8, I'll be in OFFICIAL Vacation mode. Now to get through 4 more work days!

Some random things left on mine:

Buy twinkly lights at Walmart for Window decs
bring home 2 more water bottles from work for the kids
Finish my laundry
do a dress "rehearsal" for Anara's costume
type out instructions for Mike and Michaela and give everyone they copies of the itinerary so they can keep up with me. LOL!

So exciting that your daughter is going! Hope the early pixie dust continue through your vacation. Sounds like her coming will bring you trip to a whole other level of fun. We're hoping someday to go back with our kids again too.

Yes, it's really going to be a completely different dynamic for sure. I'm excited! Adult kids are very different and super fun to have!

Glad your bands came. Actually our luggage tags came before bands. Actually they almost didn't. Probably only about a little over a month ago I read something online an then the "light bulb" came on, Hello...if you want Magical Express, you have to tell Disney that you're flying in!! Made my ME "reservation" and gave them flight info, then got the tags a week or so later. Whew!

All bands accounted for; Brook assures me the luggage tags will be here in time. I"m glad I had her do all of that. I just couldn't keep up with the phone calling that had to be done to Customer Service with working most days. My days off were full of SO much else.

I really have to starting planning clothes, I like the idea of putting outfits in a bag. This might help me not accidently wear something that should be used with something else. I had gotten some new capris for this trip but never worn any so I hadn't planned tops yet. I would say they are "odd" colors to plan with (sea foam green like, coral like, teal) so nothing in closet expect solid plain colors and black tops seem to work. Went shopping last week and found some prints that could work, but only for a certain color, that's why I might bag somethings together so I get the right combo of outfits. Of course, my 19 yr old daughter (my fashion police) might help. We haven't seen her since she went back to school early Aug. and she will be home the weekend we leave to "see us off." She might not like that I bought new shoes (got to start breaking in today!) because earlier she talked me into a different pair. I wear black Skechers to work. I hate buying shoes! So I figure an easy idea is to get the same kind, just all white. It will go with everything. Nope. Her comment (don't be offended) "They look like nurse's shoes" So plain white was out and I got something else, just not sure if their comfortable.

Still waiting on my order of clothes... says they'll be here Monday. Then I can zip up my suitcase and wait. LOL! I'm glad your DD can help you out to motivate you and get you moving! Sounds like she's got you covered! LOL! I had to laugh at the nurse's shoes! Most of us wear good old fashioned Nikes now. Or Allegrias that are all pretty paisley printed. Whatever you end up with, I hope you don't get any blisters!!!!

One more subject and then I got to get my day going. I've been closely following the ROL rumors too. Kind of check every day to see if anything changes. I heard the possible of Oct 16 too. I was hoping it would be a "starting" date because we have an AK day planned on the 17th. It would be nice. Bring that pixie dust with you!

I will sure try!!! We, Marv, Pat and I and whoever else was planning to come to the EPCOT Meet, are probably going to end up over at AK instead to just be sure! If they open it on the 16th as rumored, I wanna be there!!!