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Old 10-08-2010, 04:28 PM   #976
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Quote:
Originally Posted by brighteyes View Post
OK what is Ridmax?

Tink I am so sorry your trip was as it was. But also glad your DH is willing to make a list of things that need addressing. I am so glad your family helped you as much as they could. Just when we think our families don't care or don't want to help, they do something nice to surprise us.
I knew my DS got it when he took me by the hand and helped me walk and sometimes had to pull me and didn't care when we left MVMCP at 10:30!

Please get some rest and don't worry so much about unpacking. Here is a link to a very easy recipe and easy fast prep just throw it all together and bake.

http://www.campbellskitchen.com/reci...recipeID=27173

I of course use brocolli as my veggie, but use whatever you like or have. You can also use cream of brocolli soup or cream of chicken soup.

Talk to u tomorrow. Take care.
Ride max is a program that you pay for and use online $19-25 depending on if you can find a discount code. It allows you to type in what rides / shows you would like to do then gives you an itinerary to give you the best wait times with the least amount of walking. It trys to limit all that cross park running people do to avoid the lines. They do this by using data from the last few years plus the past few weeks. They ask that you finalize your plan a week before you go so they can maximize their accuracy. I found them to be within 3-5 min off usually being less than my estimated wait time

For example I would pick half of the MK adventureland/frountierland so I could keep walking to a bare minimum. They would tell me the best times to visit each ride, wait time for the ride and walking time between each ride. It throws in some break times and asks where you intend on eating and when. It also allows you to put in breaks of your own so you can leave the park or add somthing in at a spacific times time. I used that feature to add 15 minutes for the train ride to get back to adventrue land and it then told me wether it was better to go to splash or big thunder mountain first. You can play around with it changing breaks etc until you get the perfect set up for you. it also shows you just how important timing really is. This allowed us to only wait on average 5 min per ride and walk no more than a few minutes per ride. The result we went on small world twice, soaring and test track twice each day we were there (we would pick up FP before heading in line) etc. We often gave away our FP because we were able to do so much. Nothing like seeing the smile on a families faces that just got 5 fp for peter pan or fast track!


As you know with the Fibro doing anything for too long is a killer. I found I was more confortable at disney because I could walk for 5 min stand for 5 min and rest for 5-20 minutes. Perfect for those of us who stiffen up. it also let me mentally pace myself and know what thing I might want to cut or add back. A big plus is the kids knew exactly what we were doing and why. It was not moms fibro or mom playing favorites it was us as a family deciding we would so whatever we could to avoid waiting even if that ment waiting a few hours for our favorite ride.


For those of you intrested here is a link

http://ridemax.com/

One of the sponsers here does something similer and it looks nicer on paper but I like Ridmax a bit better. You can also go to the unofficial guide site and do your own based on their stats but it is much more labor intensive but is only $7-9.

hope this helps!
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Old 10-08-2010, 04:35 PM   #977
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How is everybody doing?

I slept 11hrs last night and didnt wake up once to notice the pain or pee I think it has been since before our trip last May that I slept that well for even a night. I feel like I'm a bit hung over but hoping this means that tomorrow will be a good day. The weather is perfect here. Sunny low 70's no frounts comming in now if i can get my 9 yr old to stop being grumpy I should have a good weekend. Arguing with him and his older sisiter to do simple things exhastes me but I wouldnt be a good Mom if i did it for him although it would be alot easier!!!

Sending pain free vibes and pixie dust to all
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Old 10-08-2010, 05:21 PM   #978
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Quote:
Originally Posted by Tinker'n'Fun View Post
Last night was rough. At 5:30am Steve came down and looked at me awake. I could see the concern in his eyes. He brought me my meds, heated up 3 wraps, layed them gently and sat with me until I calmed a bit to sleep. I feel asleep around 6:30ish but woke suddenly at 7:15 with the side rib cage pain I have been getting. It was 10 times worse than the last few times, and I freaked so much that my left arm ached... Turned this into a total panic attack. Got up, took the tranquilizers, got ice for my side and called the drs. office. I am seeing the nurse practitioner tomorrow, and she will start all the tests since I can't get in to the dr. til next week. I will be getting blood work done, a chest xray, another EKG, and a sonogram of the area where my gallbladder was done. Some I can get done tomorrow, others will be the first few days of next week. All results will be with the dr at the end of next week when I see him.

Not sure what they will do for the leg pain. My heels, ankles, shins, knees, and thighs are all inflammed. The socket to my hip is starting to go also. This is new, but I will mention it to her. I was thinking water retention, but my rings are slipping off, so this is not it.

Steve spoke with me last night and he said that I have been favoring one side of my body since the beginning of the trip, he saw a loss of abilitiy to grab things like silverware etc, and the obvious with the legs. He said that my usual ability to mask the pain was not working at all and that is why the kids kept asking me why I was mad the whole trip. Poor things thought they were upsetting me. Last, but definetely not least, he said the pain was so high at times that I zoned out, he thinks my body just couldn't handle it. First few times it scared him, rest of the times, he just held my head until I woke back up.. I don't feel like I missed any "time" but it must have happened. Scary stuff.

On top of everything else, I have an earache and drainage from the extreme temperature change.

So I will keep you all updated when I get back from the drs. tomorrow. I had to cancel parents weekend with my DD at college this weekend. Bless her heart she is coming home instead to eat ice cream and watch the shows we taped while in vacation.

Pain free vibes/pixie dust from my couch to yours!! Diane.
OOPS MISSED YOUR POST WHILE POSTING

Warnign a little tough love here

I have totally been where you are so please dont panic. The zoning out, favoring one side ususally the right side limps happens when I push. Heart attack sysmptoms and feeling like I cant breath are signs that my chest musles are way too tight not a heart attack, asthma or lung problems that the Drs tryied to rule uot for year. I was blessed that with each pregnancy I was able to see what worked and what didnt to control these things I think you will need to take a different approach. I'm glad that you are going to the Dr to rule everything out but I'm afraid they will not be able to help this will be on you to fix it. Sorry

I know how much you have done the last several months and since you are not planning on getting pregnant I'll tell you what I would do If I were you. You have to stop everthing for awhile and by everything I mean everything. You need to get some tempory help in the house, your kids need to have friends or dad get them where they need to go and you have to say NO to everthing for at least a few weeks...like past thanksgiving. I did not do this when I got really sick and the result was being completely bedridding for 2 years...sleeping 16-20hrs a day and being very afraid because it felt like I was dying. Er visits for stroke, heart attacks, apendix etc all turned out to be musle and migraine related. I now know if I stop even for a few days I can sorta reset myself but you are beyond that right now. You worry about everyone and like me are a type A superwoman. now you have to stop and not feel guilty. Your kids and DH will be ok if you do nothing for a few weeks but how devistating will it be if you zone out for a very long time because you didnt stop now. I do not remember nearly two years of my life because when the Dr said it was stress that made me worse I blew him off.

Sit down with your DH and make out a plan for the next few weeks. No more bus runs, meals Laundry nothing until you feel good and on that day do half of what you want to do or you will st yourself back. This is what my Dr told me and it took me two years to know she was right. When I do less than I think I can do I'm much better because I want to over do. I hate having FMS


I'm sorry if this comes off pushy or rough. I did not listen when I was told this and I paid and never really recovered. I want you to get your life back as much as possible and the only way to do that is to REALLY REST!!!!!!!

sending much love and pixie dust your way!
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Old 10-11-2010, 12:01 AM   #979
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Quote:
Originally Posted by tiggspring View Post
OOPS MISSED YOUR POST WHILE POSTING

Warnign a little tough love here

I have totally been where you are so please dont panic. The zoning out, favoring one side ususally the right side limps happens when I push. Heart attack sysmptoms and feeling like I cant breath are signs that my chest musles are way too tight not a heart attack, asthma or lung problems that the Drs tryied to rule uot for year. I was blessed that with each pregnancy I was able to see what worked and what didnt to control these things I think you will need to take a different approach. I'm glad that you are going to the Dr to rule everything out but I'm afraid they will not be able to help this will be on you to fix it. Sorry

I know how much you have done the last several months and since you are not planning on getting pregnant I'll tell you what I would do If I were you. You have to stop everthing for awhile and by everything I mean everything. You need to get some tempory help in the house, your kids need to have friends or dad get them where they need to go and you have to say NO to everthing for at least a few weeks...like past thanksgiving. I did not do this when I got really sick and the result was being completely bedridding for 2 years...sleeping 16-20hrs a day and being very afraid because it felt like I was dying. Er visits for stroke, heart attacks, apendix etc all turned out to be musle and migraine related. I now know if I stop even for a few days I can sorta reset myself but you are beyond that right now. You worry about everyone and like me are a type A superwoman. now you have to stop and not feel guilty. Your kids and DH will be ok if you do nothing for a few weeks but how devistating will it be if you zone out for a very long time because you didnt stop now. I do not remember nearly two years of my life because when the Dr said it was stress that made me worse I blew him off.

Sit down with your DH and make out a plan for the next few weeks. No more bus runs, meals Laundry nothing until you feel good and on that day do half of what you want to do or you will st yourself back. This is what my Dr told me and it took me two years to know she was right. When I do less than I think I can do I'm much better because I want to over do. I hate having FMS


I'm sorry if this comes off pushy or rough. I did not listen when I was told this and I paid and never really recovered. I want you to get your life back as much as possible and the only way to do that is to REALLY REST!!!!!!!

sending much love and pixie dust your way!
\

Tink - been thinking about you and worrying about you . Please rest and feel better soon.

Tigg - you are right about realizing when you hit the wall and resetting. I hate those times when I have to sleep and sleep most of the day but it IS really just what I have to do sometimes. I have been trying to reset all Fall since my DD moved to grad school. I have such a hard time adjusting to change that I always flair when my "applecart" gets upset.

I have been reading along and hope everyone is doing ok or will be ok soon!Thinking of you all.

Erika
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Old 10-11-2010, 12:57 PM   #980
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Old 10-11-2010, 01:22 PM   #981
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I got back from my trip Saturday and am sort of... I don't know. I guess I'm a little confused by a few things.

First off I obviously survived my trip. In the end my biggest issue wasn't my fibro, it was actually the fact that I was getting some insane blisters on my feet. My fibro seemed to play a very small part in my pain, which is why I'm confused.

At home I'm sitting on the couch or sitting at my desk at work, sometimes walking around taking pictures and quite often feeling miserable. Loads of pain in my back, neck, shoulders, etc.

At Disney I was on my feet constantly, doing the commando style touring even though we said we weren't going to this year (we relaxed a bit but yeah, not much) and I wasn't miserable. I had a little bit of pain unrelated to my feet, but there were only two times it was notable. One day at Animal Kingdom I was in so much pain I started crying while I was waiting for food. No matter how badly my feet hurt they would not get that reaction from me. After sitting for a little while at lunch and taking some painkillers I started feeling better though. The other was when it got cool enough at night that my fingers and knees started to get stiff and sore while I was watching the MSEP. We decided to skip Wishes because I just wasn't feeling it anymore. But out of a week to only have the fibro rear it's ugly head twice is extremely unusual for me.

I'm not sure if it's that Disney magic (which for me really just translates to "YAY DISNEY! I'm not focusing on pain stuff!") or if maybe something I'm doing at home (most likely sitting on the couch/at my desk) is causing me more harm than good, or if it's something completely different. But now that I'm home I'm confused.

And I'm probably thinking way too hard on this.

Oh and my trip was fantastic even with the pain, be it fibro or foot related. We've definitely decided that I need to re-evaluate my shoe choices before next year's trip though. I think even my blisters got blisters this time around!
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Old 10-11-2010, 02:52 PM   #982
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Old 10-11-2010, 04:58 PM   #983
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Old 10-12-2010, 12:10 AM   #984
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[QUOTE=Tinker'n'Fun;38551074]I give - Day 1 operation couch ~ failed!!!

On the other side, 4 loads of wash complete! (well actually the whites are in the dryer, towels in the washer - most likely will have DH finish them later since I am a bit sore now)

I just don't see how you can do it, my body knows it has to be here, my mind keeps taking over. I am disappointed in myself. I think the steriods are masking the pain right now, but I only have 2 days left, then I am sure it will go back to the not so pleasant feelings.

Any words of wisdom?

Oh and this would have to be post 5,000. Whining and complaining... I almost want to delete it and put in something happy and fancy-free, but that would again, just be masking the lie some more!! HELP!!! Diane.[/QUOTE

I am not sure about wisdom but here is what I do. I tend to push myself to do way more than I should. Then I suffer. What I have learned is that sometimes if I push myself I have to know that on the other side I will have to give back to myself for it. So I will sleep untill 12 and just have that be the plan for a few days. Get up, do a couple of things that HAVE to get done, and then rest. If I do one thing, then I say, I did one thing today and that is good. If I rest and that is what I need to do then I say I rested and that is good. Sometimes I feel guilty but I have realized that if I push too hard, I crash hard and then I am of no use to anybody (and miserable besides). I think the key is to "listen" to my pain and know that it is saying "time to rest" and know that the time I take to rest is an investment in a good tomorrow.

Don't be too hard on yourself, tell your mind that it is ok for your body to need to rest. If you have to do something, do something mental, read, type a list on the computer etc.... you can then say I did..... and it's my accomplishment for today and it's good.

I try to think that this is what I have been dealt and it is what it is. I have to do things in a different way - sleep, rest, work etc. but it's ok. If this is what I need to do to be the best me that I can given the circumstances then it's ok if I have to lay on the couch today and tomorrow if I need to so I feel better tomorrow.

I hope you can quiet your mind and renew your body so you feel better soon!

~Erika
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Old 10-12-2010, 12:12 PM   #985
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Old 10-13-2010, 09:12 AM   #986
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I've felt so much better for the past few days after coming back from WDW, I think we should just move there. But of course I know that as I get back into the swing of things with work and whatnot, some of the stress will creep back in. Such is life.

Yesterday in a supremely ditzy move I took both my daily doses of Savella in the morning instead of taking one Savella and a vitamin. Yeeeaaah, go me. Thankfully the only side effect I got from "missing" last night's dose was that I'm feeling a bit spacey this morning. I can handle that, it's not like I have anything important to do or anything. (Note that I'm typing this from work. )

I have to go to the doctor today, so I suspect I'll either be starting Lyrica today or tomorrow. We'll see how that helps!

Tinker'n'Fun good luck with the Cymbalta! Hopefully it gives you all of the good helpful stuff it gave me without the side effects.
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Old 10-17-2010, 06:37 PM   #987
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Old 10-17-2010, 11:32 PM   #988
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Quote:
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It's been a long week. Today was my first day off the couch and actually doing stuff. I did the grocery shopping. Took me 3 hours, but it got done. I am definetely sore, and very tired.

My steriods are done, thus the pain in my ribs is back. I will just have to let it work itself out. Hopefully not a full year like last time. I am on the Cymbalta and see no relief in the pain yet, but only have a few small side effects so we will continue on it for at least the next week and think about going to full strength.

Hope everyone if pain and fancy free.., miss you all!!
Hi Tink! Hang in there! Hope you see some relief soon.
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Old 10-18-2010, 10:22 AM   #989
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If I rest and that is what I need to do then I say I rested and that is good. Sometimes I feel guilty but I have realized that if I push too hard, I crash hard and then I am of no use to anybody (and miserable besides). I think the key is to "listen" to my pain and know that it is saying "time to rest" and know that the time I take to rest is an investment in a good tomorrow.

Don't be too hard on yourself, tell your mind that it is ok for your body to need to rest. If you have to do something, do something mental, read, type a list on the computer etc.... you can then say I did..... and it's my accomplishment for today and it's good.

I try to think that this is what I have been dealt and it is what it is. I have to do things in a different way - sleep, rest, work etc. but it's ok. If this is what I need to do to be the best me that I can given the circumstances then it's ok if I have to lay on the couch today and tomorrow if I need to so I feel better tomorrow.

I hope you can quiet your mind and renew your body so you feel better soon!

~Erika[/QUOTE]

Hi Erika hope all is going well. I totally agree with what you said. I too have had to look at my rest time as an investment for tomorrow. I look at it as energy dollars. Some days I have $5 in my "pocket some days 10 some days $1

Tink this is how I try to look at it.

Every morning i get up and kind of make a mental assesment of where my body is at because as you know every day is a new adventure and just hitting the floor with my feet is an accomplishement. I kind of assess how many "dollars" I have. Then I make a mental rundown of what I absolutely have to do which includes only two things 1. activities for the kids ie soccer and 2. meals and do I have something quick in the freezer or can I buy something that day. Then I add in what I would like to do which is basicly everything else and see if I have enough "dollars". I have had to look at my health as my "job" so that means kids help with the laundry dishes etc. I cannot do it all alone even though I am home my job is to make sure that I can be at activites and keep them fed anything else is gravy. My husband has made it clear her wants me to be Wife and Mom first maid and cook last So I break down chores like laundry as to what I can do ie sort, treat and wash and what I shouldnt do because it uses up too much energy ie folding and I delegate that out to my kids. my youngest DD now six picks up things on the floor, sorts shoes and hand vacs the stairs. DS9 empties dishwasher, folds his own laundry since DD balks at doing his which seems fair, he vaccums etc. DD11 folds laundry which is a big job and sometimes dose other odd jobs I do my best not to feel guilty about this. They need chores it is part of life. My kids have friends that own horses and they ar mucking the stalls at 5am so I use that to keep it in perspective. My DH1 mother did everthing for home and when he got to college he couldnt turn on the stove or use a wahsing machine!

Dont get me wrong my house is still a mess. There are times that it is hard to find the floor in my kids rooms and piles of stuff to sort throughout the house becase it also takes energy to get my kids to do there chores energy I often do not have. I have to let it go because if I spend $5 on a $1 day then I'm in debt and I can only do that for so long. I guess it helps that I had the worst of my disease right from the begining. I know that if I go into debt then I WILL go back to the days of crawling to use the bathroom and needing my husband to stand outside my shower because I couldnt stand up long enough to take one without assistanceI will not risk going back to that so I stay in bed or on the couch even if a full weeks worth of laundry is piled in my laundry room. I have too its just the way it is.

My husband uses a sports analogy. If you are playing vollyball and the ball hits the floor whose fault is it? In vollyball everyone is responsible for covering each others back so if it hits the floor its the teams faul. So he tells the kids a family is supposed to be a team. Mom is not the only one on the team so if the house is a mess its everyones fault. If a meal needs to be made than those old enough to make a meal even if its just a sandwhich should do so if a team mate is down.

Maybe thinking of yourself as part of a team not a one woman show will help you let go. I think that since you havent been in this crisis too long you may be able to get back on your feet and be much more normal than you are right now. That being said the longer it takes for you to really rest long term the less likely that is to happen. Just the nature of this FMS beast.

Sending pain free vibes and pixie dust to all
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Old 10-18-2010, 10:32 AM   #990
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Quote:
Originally Posted by onnawufei View Post
I got back from my trip Saturday and am sort of... I don't know. I guess I'm a little confused by a few things.

First off I obviously survived my trip. In the end my biggest issue wasn't my fibro, it was actually the fact that I was getting some insane blisters on my feet. My fibro seemed to play a very small part in my pain, which is why I'm confused.

At home I'm sitting on the couch or sitting at my desk at work, sometimes walking around taking pictures and quite often feeling miserable. Loads of pain in my back, neck, shoulders, etc.

At Disney I was on my feet constantly, doing the commando style touring even though we said we weren't going to this year (we relaxed a bit but yeah, not much) and I wasn't miserable. I had a little bit of pain unrelated to my feet, but there were only two times it was notable. One day at Animal Kingdom I was in so much pain I started crying while I was waiting for food. No matter how badly my feet hurt they would not get that reaction from me. After sitting for a little while at lunch and taking some painkillers I started feeling better though. The other was when it got cool enough at night that my fingers and knees started to get stiff and sore while I was watching the MSEP. We decided to skip Wishes because I just wasn't feeling it anymore. But out of a week to only have the fibro rear it's ugly head twice is extremely unusual for me.

I'm not sure if it's that Disney magic (which for me really just translates to "YAY DISNEY! I'm not focusing on pain stuff!") or if maybe something I'm doing at home (most likely sitting on the couch/at my desk) is causing me more harm than good, or if it's something completely different. But now that I'm home I'm confused.

And I'm probably thinking way too hard on this.

Oh and my trip was fantastic even with the pain, be it fibro or foot related. We've definitely decided that I need to re-evaluate my shoe choices before next year's trip though. I think even my blisters got blisters this time around!
I did much better at WDW and I attribute it to a couple of factors. 1 no stress!!!! We plan it out so I have absolutely nothing to worry about meals all paid, rides all planed, no buses or plans to worry about "catching" etc 2. good weather since we go in May. Not too hot or cold. 3. planning our touring means I rarely walk or stand for more than five minutes and sit for no more than 30 unless at a meal or planned break so I dont get still or tired doing any one thing. You might do Camando but if each type of activite is limited to 10 minutes or less your body doesnt get overwhelmed by it as much. At least mine doesnt. I think this is the biggest factor. Finally I can take care of myself ie take an AM and Pm shower and not do anything that stresses my body like house work. If only my daily life could be paced like this I might get something done!

Glad you had a good trip!
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