Susan's Quest for Good Health After a Celiac Diagnosis (comments greatly appreciated)

Hi guys! Wanted to let you know that Susan is back safe and sound. They had an OK trip. She started off ok, but by mid-week had lots of back pain and discomfort. She came back to work with piles of stuff to do. She called me on the way home last night to let me know and I told her I would pass the message along.

She'll be back to posting ASAP, but has not had a chance. LTO/JTO (Job taking over)! ;)

Stacie
 
Thanks for the update Stacie! Susan, when you get this, I hope you're feeling much, much better. We miss you!
 
Hi guys! Wanted to let you know that Susan as not disappeared off the face of the earth she is just burried under a big pile of paperwork at her job! She's hoping to get back to journals end of the week!!!
 

Thanks for the update Stacie! Can't wait to hear about her trip adventure!!
 
Sorry I have been off the WISH board for so long. Life has hit me square in the head, and I haven’t had a chance to catch my breath for weeks now. I am still struggling with my back issues, but I thought I would do a mini-trip report from our trip with my DSIL and DBIL in October because I know you have all been waiting for details!

The Disney Scooter Adventure (trip title kindly provided by my sister!!)

We left Atlanta around midnight on Saturday night and got to SSR at about 8:00 a.m. Sunday morning. Had breakfast at Artist Palette (the counter service place at SSR), then since our room was ready, went ahead and called for my scooter to be delivered. The gentleman who delivered it argued with me that I didn’t need a heavy-duty scooter – there was no way I weighed over 300 pounds! I laughed and said I wished that were true, but I do weigh over 300 pounds. He shook his head in disbelief, but left my scooter anyway! It was difficult to maneuver with this thing, but it did allow me to do what little bit of park time I did do, so I was grateful for it. The hardest part was getting the stupid thing on the buses – my DH ended up having to do it for me because you had to back it into a particular spot on the bus, and I just couldn’t get the hang of it.

I took a long, leisurely swim in the pool late Sunday morning, and even though it was painful at times to move around, I still enjoyed the water. Took a nap Sunday afternoon and then headed to MK Sunday evening. Did okay for the first couple of hours, but started really hurting about 9:00 p.m. Stayed to see the parade and fireworks, which is always my favorite part, and I’m glad I did because I got a great spot with my scooter (I was able to save the spot for a long time because I just sat there waiting). So it worked out okay, but the bus ride back to the room was long and difficult because every time we hit a bump in the road or came to a sudden stop, I felt it.

Monday we slept late and then met our very own Dan Murphy (a long-time DIS’er for those of you who don’t know him) for lunch at Turf Club (the sit-down restaurant at SSR). Enjoyed seeing Dan again immensely and chatting with him about all things Disney. Monday night we went to Pleasure Island to the Comedy Club and they were really funny! Our DD enjoyed that greatly, and I had as much fun watching her reactions as I did listening to the comedy troupe.

Tuesday my DSIL and DBIL arrived and we went to Epcot WS. We had lunch in Morocco and got to see the belly dancer, so that was fun. I saw the movie in China, the Chinese acrobats (who were outstanding) and enjoyed shopping in Japan a bit before I started to flag. My pain level was ramping up again, so I went back to the room to rest while they continued to tour the park. We had dinner at Turf Club that night (we really like the restaurants at SSR, in case you hadn’t figured that out), and the food was great as usual.

Wednesday I was in so much pain that I didn’t go to the park at all – stayed in the room the whole day while everyone else went back to Epcot to do Future World. We went to California Grill for dinner that night and saw the fireworks from the observation deck, so that was cool – and dinner was delicious!

Thursday we went to MGM Studios. I waited for everyone else to ride RnRC and ToT and discovered that I don’t do well while waiting for other people to ride attractions that I can’t ride! Just hated it – even though the CM’s talked to me as much as they could while I waited in the gift shops, I really felt left out. Still glad I went with them, but hated not riding! Then we did Great Movie Ride (which we all enjoyed, especially when we got to go down to the front of the line with the scooter) and the Back Stage tour. The Back Stage tour was somewhat jerky, and I was in pain by the time we got off, so we went to Studio Flatbread Co. and had lunch. Then we took in the Stunt Show and by the time that was over, I was done for the day. The plan was to go back for Fantasmic that night, but I just couldn’t do it. My DH and DD stayed with me that evening. DSIL and DBIL never came back to the room that day – they stayed in the park all day and saw the show that night. They have way more energy than I ever will, even when I don’t have back problems, and they didn’t stop the whole trip. My folks and I don’t do well unless we have some down time, so we just let them tour at their pace – good thing, especially since I was down for the count for most of the rest of the week.

Friday everyone else went to MK. I was in tremendous pain, so I stayed in bed all day. We were scheduled to go to the luau at the Polynesian that night, and I was pretty disappointed with this. We have been before and really enjoyed it, but this time the seats were not good (even though we got Category 1 seats – we were at the back of the first level, so unless I did a contortionist routine, all I saw during the show was a pole and the back of a man’s head who was sitting in front of me). The seats are very low, and I was in excruciating pain from sitting in mine and then having to get up at the end of the show (that I didn’t see very much of because of aforesaid pole and man’s head). I’m glad I have seen this before and know what a great show it is, or I would have been very upset about paying that much money for such a poor experience. Fortunately, DSIL and DBIL were on the other side of the table, so they could see fine and they enjoyed it. The food was good, but I won’t be in a hurry to go back to this one.

Saturday it was raining, and since I couldn’t get the scooter wet (it wasn’t waterproof and would have been ruined if I had taken it out in the rain), I stayed in the room for most of the day again. I was hurting so much by this point that it was just as well – I don’t think I could have made it more than an hour or two in AK, anyway. The weather cleared up that afternoon, so my DH and DD went with me to Downtown Disney so I could get out a bit and shop at the World of Disney store. We went to Ghirardelli’s and shared an ice cream treat afterwards, which was a really niceDisney family moment. We went back to the room and prepared for our last dinner of the trip at Flying Fish, our favorite restaurant. Unfortunately, by the time we got there, I was hurting so much I felt like I was going to throw up. There was no way I could make it through dinner, so I got a cab and went back to the room while everyone else stayed and ate. By this point, I just wanted to go home. Never before in my life have I wanted a Disney trip to end, but I was ready for this one to be over.

Sunday we got up, packed and drove home. That was torture for me, especially when my DH hit 10 potholes in a row (not his fault, nowhere for him to go, apparently they were working on the roads there) and I burst into tears from the pain. He felt SO bad, especially since he had been frustrated with my inability to do much for the last half of this trip and it was evident that he was wishing we had just stayed home. We finally got home Sunday evening, and I ended up in the neurologist’s office on Tuesday because my chiropractor said my pain levels were so high he could not help me until I got some medication to alleviate some of the pain. After taking an anti-inflammatory and a muscle relaxant for a few days, the pain did die down some and I have been better able to deal with it since then.

So to sum it all up, I’m glad we went (my DSIL and DBIL had a good time and that was my main concern), but it was a difficult trip for me and I hope I never have to deal with that much pain in the happiest place on earth again!
I will post more later about the specifics of what’s going on with my back now and the outlook for getting back to my eating plan and exercise - I have a 5K in May to train for, you know!! Thanks to all of you for keeping me in your thoughts. Here’s hoping I can get to some of your journals soon. Take care!:grouphug:
 
:grouphug: Susan, Glad you are back, although i will admit, this isn't really the kind of TR that i was looking to read!! :sad1: I am so sorry that you had to deal with all this awful pain in WDW.. But glad you had somewhat of a good time..
Glad to have you back on the Wish boards, and posting! Hopefully, you will start moving in the right direction and starting your training again.. We need to see you in May!! :goodvibes
 
:hug: Susan,

Welcome Back..... I'm so sorry to hear about all of the pain that you experienced on the trip.:sad1: How are you feeling now?

Hope you have a good week.:hug:
 
I'm so glad you're back posting again!!! I know how much you've missed everyone!!! I know it's been discouraging for you, but you'll be back on track no time! Just keep thinking 5K in May!!! You can and will do it!!!

Just in case you've not caught up on Scott's journal yet... He's forming a Margaritaville WISH racing team. Our logo is a parrot instead of a penguin! lol!!! We'll be handing out strawberry margaritas and key lime pie after each race instead of water and bananas! :rotfl: Ok, so not really, but a girl can dream right??? :rolleyes:

Hope your back is feeling better much soon so can get back on track!

Hope you have a great day!
Stacie
 
Hi Susan! Sorry To Hear You Were Still In Pain On Your Trip.i Just Came Back And Was Still In Alot Of Pain With My Arm,which By The Way Was Bothering Me Before I Left (calcium Buildup In The Shoulder Joint Very Painful) The Dr. Put Me On Medicine Before I Left It Helped But It Still Is Not Right. But On A Happier Note I To Just Stayed At Ssr And We Loved It!!! We Were In The Springs Buildings, Great Location!!i Did Not Want To Leave.we Toured The Animal Kingdom Room On Display There And Now I Have An Itch!!the Rooms Are So Much Bigger.maybe Santa Will Bring Me An Add On Ha!ha! But Still Love Ssr! I Have To Go Get Dinner Ready Ttyl!
 
Hi, guys. Thanks for checking in on me - I appreciate the support.

Stacy - Yes, I need to be there in May. I DEFINITELY need to get better soon!

Tracy - Thanks for the good wishes. Back report to follow.:goodvibes

Stacie - I can't eat key lime pie, but I will be FIRST IN LINE for a strawberry margarita - YUM!

Big Mama - Sorry about your shoulder pain - I am more than sympathetic to anyone who is dealing with a chronic injury/painful condition. Hope it gets better soon. I can relate to DVC addonitis - we have it BAD at my house! We toured the AKV models, too, and really liked them, but SSR is still our fave so we will add on there at least one more time before it's all over, I'm sure.

Okay, on to the continuing saga with my back.

When we came back from WDW, I was hurting so much I could barely breathe. I saw my chiropractor the next morning and every time he tried to do an adjustment, he just "bounced off" the area and wasn't really getting anything to move - not to mention the fact that he was KILLING me and I was making noises that probably caused the folks in his waiting room to second guess themselves! Anyway, he said that he thought I needed to see an MD to get medication because the pain and inflammation were so bad that he could not get any improvement to happen. So I went to a neurologist the next morning and got a prescription anti-inflammatory and muscle relaxant. After taking those for a couple of days, the pain and swelling were better and I went back to the back doc for another adjustment. He was pleased with my progress and said that he felt the medication was what I needed to get me "over the hump" and into a place where I could improve. I was just glad that my pain had gone from "somebody please shoot me because I can't stand this agony anymore" to "my back hurts, but I can deal."

So that was a little over three weeks ago, and since then I have been slowly improving. I am at the point now where I can get out and walk a bit (went to the grocery store this weekend and walked there for about 45 minutes), but I am hurting when I get home. Not hurting as much as when this started (and not hurting as much as last weekend when I tried to walk around PetSmart), but hurting enough to need lots of time on the ice pack and rest for the balance of the weekend. Walking from floor to floor at work also causes some pain, although it is minor compared to what I have had. My chiropractor says I am moving in the right direction, but my back will continue to go out every few days for a while yet because it just takes lots of time to heal a back injury. He is still positive that I will be able to train and participate in the 5K in May, although getting to the point where I can comfortably exercise again is taking a lot longer than I thought it would. Still, he says that if I hadn't fallen when I did and caused the underlying problem to be exposed, it would have progressed to the point that back surgery would have been needed :scared1: - there is no way I have the time or money for that, so I am glad to be receiving the care that I need and happy to see any improvement at all (even if it is slow as molasses going uphill in the wintertime).

So I have come to a decision (I keep making that statement in this journal, it seems - lots of lifestyle changes needing to happen here, I guess). If my back is still continuing to hurt when I walk by the time the Christmas holiday is here, I am going to start training anyway. Now, I won't be running lots of miles or tons of hours - I am not a stupid woman and I have absolutely ZERO desire to go back to the excruciatingly painful experience I just lived through. But I am GOING to do this 5K race in May NO MATTER WHAT and I CAN'T wait much longer than Christmas to start training for it. So I am going to do my best to listen to my body, but I am NOT going to let this back problem keep me from reaching this goal. I am ALMOST well enough to grocery shop and cook again - which is a HUGE component of getting the weight to start coming off while I train for the race - and again, if my back hurts when I do the shopping and cooking by the Christmas holiday, I'll just do it anyway. Funny thing, I only did the eating plan and exercise for about two weeks before this back injury took over my life, but I miss it now. I miss the structure and that amazing feeling of accomplishment I got when I stayed on plan and worked out. I miss feeling like I was doing something REALLY GOOD for myself and my health. Now I find it is easier and easier to eat stuff I KNOW I shouldn't eat because I feel sorry for myself or it seems not to matter so much because I can't exercise. And I WON'T let myself stay in this mental place and gain more and more weight - I just REFUSE to stay depressed and WIM all the time. I feel like I am in limbo right now, but I'm NOT going to STAY THERE. TRUST ME - I WILL be there for that race, if it kills me (well, not literally kills me - you all know what I mean).

Well, duty calls - have to run for now. Will post again when I have a chance and hopefully get to some of you guys journals, too. Thanks for sticking with me - it means THE WORLD to me, guys, it really does!:grouphug:
 
Hi Susan :wave:

We missed you around here...thanks so much for catching us up, even though I'm sure it was tough to write about.

I love your determination and the commitment that you've made to yourself. You've been faced with a lot over the course of the last couple months but your spirit seems to be in the right place.

I know it probably does not compare, but I dealt with some back issues too (bulging disc) and I think it has really helped me to get out there and walk/run. I think my muscles along my spine are much stronger and therefore can alleviate the pain/pressure on the discs. So in short, I think it's great that you are getting out there...even if it's for a few minutes. Sounds like you have a good doctor too :)

I wish you the best with everything...and we'll be sure to make it a double strawberry margarita (to sub out for the key lime) ;)

Hope you have a great day!
 
Oh my goodness...SUSAN!! YOU ARE BACK! :hug: I'm sorry I missed your journal post. Not sure how I missed your Disney Scooter Adventure TR.

I'm so sorry to hear that you were in such excruciating pain during your trip :(. I give you so much credit for making the most out of the situation. I love your attitude and despite the challenges you always seem to keep your chin up I really want to see this pain end for you so you can begin your 5K training! I know you can do it and your determination is evident. We just need to get you healthy first! :goodvibes

I look forward to keeping up with you as you begin your training. :sunny: Don't stay away too long..we missed you around here!!!
 
Decided to come back and add a couple of things to today's journal entry.

First, hi Scott! Thanks for checking in. I missed you guys, too. I think a bulging disc very much compares to my back issue - excruciating pain is excruciating pain, no matter how you slice it! I appreciate you sharing your experience and I do agree that moving and strengthening those muscles is a must. I am just trying to go slowly enough not to aggravate the pain again!

Okay, first off - I have decided not to ride the bus back and forth to work anymore. It is just too crowded and takes up too much of my time each day to make sure I can get a seat in the morning and evening. I have gone back to driving for now, but a co-worker has suggested we start a vanpool. This would save us considerable transportation $$$, but wouldn't take as much time as the bus. The thing is, if we do this (and I am sure we will unless someone backs out), then I will have to do all my 5K training outside. I won't be able to get into the gym at work because I will have to stay on the vanpool schedule. So that's a new twist for me - having to train in the cold, rain, eventual heat and humidity, etc. But I am still determined to do it. My DH says he doesn't like the idea of me training by myself in the dark (which it will be in the morning and evening by the time I get home during the winter months), so he said he will go with me.:banana: Now, I am not naive enough to think that means he will be with me every day, but maybe he will go with me more days than not. It would be great for him - he could use the exercise!:yay: So we'll see how it works out, but I already told him that I WILL train for this race, whether he goes with me or not. Now I just have to keep that motivation high when I actually have to get out and do it!!

Second decision I have come to in the last few days: I have been doing some research on the link between gluten and casein (casein is the protein in milk and milk products - apparently it is almost identical to gluten in its molecular structure). My doctor told me when I found out I had celiac that my testing showed I was also reacting badly to milk, but after cutting milk products out for about three months, I started to add them back to my diet thinking they weren't having an effect on me. I had an experience this past week which makes me believe I am kidding myself. I have always loved cheese, and I eat a lot of it. Even when I was doing the ediets plan, I ate a lot of cheese. This past week I ate quite a bit of cheese along with other dairy products and noticed that I was even more exhausted than usual. It occurred to me that the dairy may be having a negative effect on my energy levels and that may be why I am still so tired all the time, even though I have been gluten-free for eight months. So (drum roll, please) I have decided that when my back is well enough for me to take over grocery shopping and cooking again, I am going to pick up with the wheat-free ediets plan and program it to omit milk and dairy products (which is an option that is available on ediets). NO MORE CHEESE!!!:guilty: Maybe I'll live through it! I just would really like to see if cutting out dairy makes me feel better. If it does, then that would be a HUGE breakthrough for me in terms of my health and wellbeing. I'll keep you posted once I actually put it into practice!

And finally - I decided that Stacie's idea of posting a picture of her and Matt was a good idea. I like to put faces with names, too. So I asked her for the URL's for pictures she might have of me and my DH and DD (I don't have a digital camera and I knew she probably had a couple from our Disney trips). She sent me the links, so I'm going to try to post them here. Hope it works!

This is a picture of me, my DH and DD on BTMRR in January of 2005 (Matt took this picture).

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And this is a picture of me and my DH at the Flying Fish (our favorite restaurant) in December of 2006 - I think Stacie took this one.

47b7dd08b3127cce82f1c251677400000026100AZsW7Fo4atWMA


Hope they come out okay and you guys can see them!

P.S. Hi, Amy - you posted while I was posting! I missed you guys, too - I promise I won't stay away so long again (if I can help it)!

So that's all for now - thanks for staying with me! Later!

Susan
 
Stacie helped me fix the Flying Fish picture - see above!

Nothing more to add now, but I'll think of something.
 
YAY!!! Pictures! THANK YOU SUSAN. It's so great to "see" you :). Great pics...LOVE the one on BTMRR!!! :goodvibes
 
It's great to see you, Susan! :goodvibes It's always nice to put a name with a face. :cool2:

I'm glad to hear that the pain in your back is improving.:thumbsup2 I'm so sorry to hear about how bad the pain was though. :(

I love the determination that you have with the 5K!:banana: Your WISH family will be cheering you on all the way!:cheer2:

Hope you have a great day today!:hug:
 
So sorry that your back has been bothering you. Glad that some things are working.
 
I LOVE that BTMRR pic!!! I still can't believe Matt captured that!

Just checking in. Hope your backing still improving!!! Keep up that positive attitude!!! I can't wait to do the 5K w/ you in May!!!

Stacie
 














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