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Old 10-03-2010, 11:47 AM   #961
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Originally Posted by onnawufei View Post
Note to self: Look at your subscribed threads once in a while.

I recently went to the doctor and this time I brought the hubs back with me so he could put in his two cents as well. I'm really bad at articulating myself, and having him there ended up super helpful. Plus I didn't have to try and relay information to him when it was over, which is another plus.

So after my trip the doctor is going to put me on Lyrica as well as Savella. It's a good thing the hubs gets a bizarre joy out of filling my weekly pill container thing (he does, it's really strange) since I just keep getting more pills to put in it. But hopefully the Lyrica will help. The doctor also apparently doesn't think my insomnia is a big deal because I told him I'd been taking over the counter sleep aides to sleep every night and all he did was ask what I was taking. So I guess I'm good on that?

Meanwhile I leave Saturday for WDW and while i'm super excited I'm also a little nervous. We've had crazy rain since Sunday and the weather (or I'm assuming it's the weather) is making me feel like a little old lady. Actually, saying that might be offensive to little old ladies, some of which probably feel fine. If my Grandma were still alive I'm pretty sure she'd be able to take me in a wrestling match right now... which would be really strange but not entirely unlike her. Anyway, I'm hoping that the Disney magic perks me up some, which I'm sure it will. It's a little easier to ignore pain when you're at Disney as opposed to when you're sitting at your desk at work.

Well that was longer than I meant it to be. Oops!
Well I hope you are able to have a good trip and enjoy it. Being in pain at Disney is still better than being in pain at home but still hope your trip is pain free as it can be.

The lyrica works for me. If I don't take it, I really can't pull through the days without being a whimpering crying mess. I have cut down my dosage by half because along with possible CFS they just added to my tiredness.

Hope to hear an update from you when you get back.
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Old 10-03-2010, 11:57 AM   #962
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Tigg,

I am sorry you have been talking to yourself!! Usually I am up late but have been trying to get to sleep early but it hasn't been working. I have also been procrastinating completing my online job application for the school board. It was a 3+ hour process and for me not paying attention to detail, having to re-do things over again took me longer. I am such a perfectionist that I rush and don't do it right and always takes me longer cause I make mistakes cause I worry too much about it, Does that make sense???

So, I finally got my application in and done for the supply list, meaning if a Teacher's Assistant or Educational Assistant is sick, I get called as one of many. Then there was another job part time for only 5 hours per week which was permanent, so I applied to that too. Just in time before I had to go to work. THEN I check my application again just to make sure it was right, and I notice it asked for supporting documentation that the other didn't ask for. I guess it would mean my diploma, etc?? I coudn't find it before I went to work and the application deadline was that day. So I added it to my information on the website, but couldn't send it with that particular job. I hope they see it on the website, even though I didn't send it with my application.

I hope I didn't mess that up and still have a chance at that job. I know I can handle 5 hours a week along with my other job too.

I am so worried my lack of seeing this requirement and adding it late doesn't affect my chances. I guess time will tell.

I am still in this fatigue fog and can't get out of it, I am so tired all the time, I don't know what to do. I am not sleeping well at all at night, despite my exhaustion.

Tigg, what do you do when you have a two month long flare of CFS?? I really have to get out of this somehow. And soon!!!

I hope everyone is doing well and pain free as possible.
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Old 10-07-2010, 12:16 PM   #963
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Old 10-07-2010, 12:43 PM   #964
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Quote:
Originally Posted by onnawufei View Post
Note to self: Look at your subscribed threads once in a while.

I recently went to the doctor and this time I brought the hubs back with me so he could put in his two cents as well. I'm really bad at articulating myself, and having him there ended up super helpful. Plus I didn't have to try and relay information to him when it was over, which is another plus.

So after my trip the doctor is going to put me on Lyrica as well as Savella. It's a good thing the hubs gets a bizarre joy out of filling my weekly pill container thing (he does, it's really strange) since I just keep getting more pills to put in it. But hopefully the Lyrica will help. The doctor also apparently doesn't think my insomnia is a big deal because I told him I'd been taking over the counter sleep aides to sleep every night and all he did was ask what I was taking. So I guess I'm good on that?

Meanwhile I leave Saturday for WDW and while i'm super excited I'm also a little nervous. We've had crazy rain since Sunday and the weather (or I'm assuming it's the weather) is making me feel like a little old lady. Actually, saying that might be offensive to little old ladies, some of which probably feel fine. If my Grandma were still alive I'm pretty sure she'd be able to take me in a wrestling match right now... which would be really strange but not entirely unlike her. Anyway, I'm hoping that the Disney magic perks me up some, which I'm sure it will. It's a little easier to ignore pain when you're at Disney as opposed to when you're sitting at your desk at work.

Well that was longer than I meant it to be. Oops!
Have a great trip!!!

Sending pixie dust your way!
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Old 10-07-2010, 01:39 PM   #965
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Originally Posted by Tinker'n'Fun View Post
I am home and on the couch, so I thought I would do an update on our trip.

The first day or two were the true test, and I guess you can say I failed. We did tour MK the first day. We were only there until around 8pm, but when we got back to the room, DH went to get me an ice tea. By the time he got back, I had passed out on the bed, clothes and all (even sneakers). DH felt so bad that he took off the sneakers and covered me up. I slept until around 3am but then woke up startled (so not used to sleeping at that time). Walked around the room, took my meds I missed and then just settled in the bed and layed until morning. I think I fell back a sleep a few times.

The rest of the trip went from being okay to absolutely not being able to walk at all. The tears would stream down walking from the bus to the room. We hemmed and hawed and I (not the family, I) decided not to get the EVC or wheelchair this time. It was and will be the last time walking the world. The pain was most likely not worth it, but my stubborn nature just couldn't do it. Some nights my legs were so swollen and sore, my DS would tease he was going to go play softball. (I am so serious that they were all so good about it, joking trying to make me laugh, letting me sleep). We missed a lot of dinner reservations or were late, and Disney was wonderful about this. We did get to eat at all the places we wanted so at least that part worked out.

So my next step is back to the drs... I will give it a week for my legs to calm down, hopefully my cold will just clear up and won't require any meds, and the pain in my ribcage near my "what used to be my gallbladder" can be checked out also then.

So here is my final thought, being stubborn and having Fibro do not work hand in hand sometimes. I most likely am the reason this trip was not what it should have been. I will now rent an EVC or wheelchair as needed. Touring plans will have to be created to cater to me, not the kids anymore. The only thing I can say is that since we have gone enough, my children have had the luxury of riding every ride that they have ever wanted. So while planning from now on, if we miss a ride or two, it won't be the end of the world.. hehe, play on words.

Thanks for all your kind words and concerns. I am going to go sit for a little bit longer in my self pity, and then try to get up and unpack a bit. Cleaning the house prior to leaving did help out a bit, so I hope to get the unpacking done in a few days...

Last but not least, I need some Totally terrible flair dinner ideas to feed DH, DS,and my self for the next week or so. Easy, meals that require very little prep and standing. I feel I at least owe a dinner each night to the boys who made this broken down queen, feel like the beautiful princess she used to be.... Thanks everyone, missed you all. Diane.
Tink,

For really quick prep meals I pull out the Crock pot and put whatever meat I have in with a interesting salad dressing like rasberry with chicken. It works great.

I'm so sorry this trip didnt go as planned. I was a bit worried before you left you were doing so much to prepare. I know I did the same thing this year and didnt fare as well as last year. Hosnestly I dont know how you did it! I agree with what your Dr said before the trip you can't be superwoman. The two weeks before need to be a "NO" Zone if sombody wants soemthing done you gotta say no! Our last trip to New England (or should I say attemped trip) I did everything the week before. Didnt put myself 110% first and ended up canceling the trip the night before we left and ended up in bed for weeks It has been six years since we have been back now. The fact that you made it at all when you have been having such a hard time of late is amazing to me. You are one tough cookie!

I think for those of us that are have an advanced form of the disease have to make some really tough choices before a trip. Rent an EVC use your handcap plate and get a guest assistance pass and/or plan everything around your trip for at least a month before.

For those of you who were not here before my trip this ment for me 1. No buses. if we hadnt stayed on the monorail we probably wouldn't have gone I just cant take 40 to 90min added to my day. besides the fumes and the jostleing are just a no go for me. I always thought of it as a luxury but with my fibro having a car at least is a medical necessity. 2. My kids all knew that they were only gareenteed 3 rides of their liking anything else was a bonus. That took the pressure off and they always got more than expected. No park hopping or crisscrossing. Meals where we toured. 4. RIDMAX!!!!! OMG I would not have survived without it and it ment that I did not feel it was my fault we were not doing something on the spot. We were waiting for the best time and boy did it work We did everything sometimes twice! 5. Long breaks in the middle of the day by eating big sitdown lunches backed up by shows or going back to the room. This also ment no rushing to Ressies in the evening when we were all tired.6. Mom was on vacation so everyone had a fanny pack with snack, water, maps itenerary, hand sanitaizer etc. Even my 4yr old took care of herself except going potty. Mom was not asked 20xs a day for soemthing 7. We planned to use the train at MK to get to the back of the park one morning and to leave the park one evening this prevented ALOT of walking and was nice for all of us. I have yet to figure out a good way to tour Disney studios. I hate that park it is so cramed and very unfriendly to those of us with mobility issues. 8. We bought our new spring clothes and packed them right from the store this ment mom actually got new clothes. In fall you could stop wearing your summer clothes early and do the same thing. This way no laundry before a trip! 9. I had to take a shower every AM and PM to loosen up and relax this is possible only with easy transportation or you just never get the time. The most important thing was to put myself on a form of bedrest for two weeks before and pull back on my meds so they would work better when I got there. I did this 2yrs ago and it worked GREAT this year I only really rested the week before and I suffered!!!

At first I felt guilty doing all this around my Fibro but what I found is that DIsney is exhasting for everyone. My whole family benifited by taking it slower and by me being better. I really wish I had done that this year becasue I ended up breaking down and nearly cancaeling my trip when were there. My 5yr old was very upset by it all

When I talk to healthy Moms they always say how tiring it is for them on trips too.

Hope this give those of you planning a trip some ideas. Hopefully you will do a little better than I did this past May when I forgot that for a few weeks I have to be 110% first or trips dont go well.


Tink take care of yourself!!! Hope your Dr appointment goes well!
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Old 10-07-2010, 02:42 PM   #966
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Tink,

Awahile back you asked about suppliments. I tried writing a feww things and Dis post crashed Then I got tired. Then I forgot

anywho, I have tried alot of suppliments many did nothing some I had reactions to but many have helped so I'm going to talk about them a few at a time. As with meds you should check ones you dont know about out online web md, Dr weil, cleveland clinic etc many of the unusaly one are very toxic.

My first recomendation would be for Flax oil. when I'm taking them as I should I take 2000 mg twice a day. This helps with fatigue and generally balances me. Dr's now recomend it for heart and eye conditons. (and they thought we were crazy 15 yrs ago!) The thing about flax is that it takes awhile to take affect and it is a subtle change that you are more likely to notice when you go off. You can also take a combo of Borage, fish, flax and evening primrose oil. These oils are in the omega 3 oil family. One might work better than another and you can get capsels with all three.

The suppliment that got me trying things was Garlic. I had been on 3x the normal dose of Zantac for heartburn the first two years I was sick. I heard that a bacteria in the gut could cause this and that garlic acts as an antibactieral. After just a few weeks of taking garlic my reflux was gone!!!!! I also was more regular. I was able to go off ic completely with no side effects (cant remember when I think when I got preganant) I took liquid garlic with parsley pill ( parsley is for odor control) twice a day

Drs' have found vitamin D very effective but I think you already take that.

I will try to post others as I get a chance but I would start with these three.
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Old 10-07-2010, 02:46 PM   #967
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"apple", peaches, "pumpkin pie", who's not ready holler "I"...
i'm just trying to be optimistic!
I am SO CLUELESS and I hate it!!
 
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Old 10-07-2010, 03:02 PM   #968
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oops!

I ment to say you can get capsels with three kinds of oils.
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Old 10-07-2010, 03:07 PM   #969
Tinker'n'Fun
"apple", peaches, "pumpkin pie", who's not ready holler "I"...
i'm just trying to be optimistic!
I am SO CLUELESS and I hate it!!
 
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Old 10-07-2010, 03:33 PM   #970
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Fibromyalgia ??????

Just made an appointment with a Rheumatologist. I'm 46 and have had OA since I was 17. For the past 3-4 years I've had constant pain in my hands, thumbs, wrist, back, hips, knees, feet and toes.
I go to bed at night and I sleep (some nights) but I don't rest. I feel like I'm in pain all the time.
Looking for any tips on specific questions I should the Dr. when I visit and what I should expect on my first visit.
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Old 10-07-2010, 04:13 PM   #971
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Just made an appointment with a Rheumatologist. I'm 46 and have had OA since I was 17. For the past 3-4 years I've had constant pain in my hands, thumbs, wrist, back, hips, knees, feet and toes.
I go to bed at night and I sleep (some nights) but I don't rest. I feel like I'm in pain all the time.
Looking for any tips on specific questions I should the Dr. when I visit and what I should expect on my first visit.
ongomom2

I have not gone to a Rheumatologist although I have seen 15 dr's or so over the years. Recently I have heard of a really good one in my area so I might be right there with you soon checking out a new Dr. I have avoided Rheumatologist's because they tend to be med happy and my case fibro reacts badly to most meds.

On the first visit I would bring a very clear list of your sysmptoms and if they come and go, go in cycles etc. He will be doing some poking to determine what trigger points you have. Sounds like you have the usual in wrist ancles etc. Otherwise it will be the usual medical exam and blood tests. You might want to ask for tests to rule out lyme disease, MS, lupus, and vitamin D difficincy if your regular DR has not done that. You also might want to ask if he knows about the XMRV virus. There have been studies done just in the last year linking XMRV and a few other mice visuses to FMS. If he knows about these he is really on top of the research because very few Dr.s know about this yet. I have a good Dr and I had to bring the studies to him.

Ask how he manages meds. You need a Dr that looks at this a team approach. Fibro and Chronic fatigue are very unique diseases in that we all like snowflakes not one of us is the same. In my case Im just a flake Many of us need to start out at extreamly low doses and work our way up or we deal with unexpected reactions.

The biggest thing I would tell you is know what you are willing to do regarding meds. Most of us have had to come to the realization that we have a choose between being in pain and be mentaly clear or try to be pain free but in a fog. If you go back and look through this thread you will see that most of us have the problem of finding a med that works and having to take increasingly larger doses to keep it working. In the case of meds like vicoden and ativan (things I take) you can become addicted or at least dependent. I became dependant on ativan many years ago and it took a year to come off and it was horrible I found that I could take in as needed for a few days-weeks at a time and it works well but I cannot take it everyday or it stops working and I cant get off so easy. The big drugs out there now are cymbalta, lyrica and humara. I have refused to try any of them due to may past reactions but others here have tried them and can tell you more. The only warning I would give you is that Humera now has a BLACK BOX WARNING that it can cause lymphoma or blood cancers this is somthing you definately dont want to get!

If you and your Dr decide on a medication make sure that you read up on it first and make sure you are aware of the possible side effects so you know what to look for.

Many of us have had better luck with suppliments, aroma therapy, massage, acupunture etc. They do not cure us but can take the edge off with no side effects. If you have a Dr. who is open to these kind of things and your insurance can cover some of them they are definately worth trying. I would love to try chiropractic and massage therapy but havent found a way to afford it yet.

Hope this helps!

Sending pain free vibes and pixie dust to all
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Old 10-07-2010, 04:18 PM   #972
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Quote:
Originally Posted by Tinker'n'Fun View Post
Thanks Bonnie, your post is SO RIGHT ON!! I did take some pressure off myself this time and did not book a bounceback trip. The kids were a bit disappointed, but for now I need to think about me and make a true plan for my future. It took me a while to get to the advanced stage of Fibro, and while I am truly blessed it took this long, I am scared to death of all the changes.

Tonight I am making a list for the drs. and DH wants to help. He really came through this time and while he didn't want to scare me at WDW he said he has a lot to offer while making out the list. Things he saw and noticed that need to be addressed. I guess I will find out what they are tonight.

I found a frozen chili package in the freezer and put it frozen and all in a pot. I took out chicken for the crockpot tomorrow. Thanks for the suggestion.
Tink

Did you try Ridmax or the plan that sponsors this board(name?) for your trip this year?


WOW MY SPELLING AND TYPING ARE BAD TODAY SORRY!!! I know the words are wrong just not sure how to spell them and cant use spell check today
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Old 10-07-2010, 10:29 PM   #973
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"apple", peaches, "pumpkin pie", who's not ready holler "I"...
i'm just trying to be optimistic!
I am SO CLUELESS and I hate it!!
 
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Old 10-07-2010, 11:25 PM   #974
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Bonnie, sent you a PM... (my spelling is cruddy also it takes 3 spell checks each time I 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.
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Old 10-08-2010, 03:21 PM   #975
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"apple", peaches, "pumpkin pie", who's not ready holler "I"...
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I am SO CLUELESS and I hate it!!
 
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