Just Got Back From Vacation!
 

Hi everyone,

I just wanted to let you all know that we have just got back off our Vacation. We had a lovely time but wow, am I paying for it now!!!! My leg has swollen up a lot and the pain has gone up from the pressure in the airplane - I actually had to take my Ketamine a few days on the trot which isn't usual for me at all as I only take it when I absolutely have to!!!

My dad doesn't understand what RSD is and just how painful it is which is really stressful. He expected me to walk everywhere without realising that I can only walk 15-20 minutes at the most before I need a sit down. Everytime I needed to sit down, he would start moaning at me or say that I was "playing on it" to try and get out of something I didn't want to do - even though I had a really swollen, blue and red leg!!!! I don't think my dad understands just how upsetting it is to know that your loved ones don't believe that the pain is as bad as it is - my mum understands thankfully and she will tell my dad to stop it but he still carries on saying nasty things!!

I think towards the end of our vacation, my dad started realising just how bad my foot was ... he saw how red and blue it was and how swollen it had become and how bad the spasms were but he still just didn't seem to realise that the pain was extremely bad and that I needed a sit down!! I really wish he would come to the hospital appointments with me and see how painful it is but he wont unfortunately and we have tried everything!!

All in all though, it was a lovely vacation as long as I paced myself and didn't do too much - I had to sit down every 10 minutes and rest a lot during the day, take my medications etc to try and prevent things from getting any worse!! We saw lots of great sights in Vegas ... we went and watched a pet show which was great (and I got a sit down which was a bonus!:D), went up the Eitthel tower and that has a great view of the Las Vegas Strip, went into an hotel that has it's own mini zoo with lions and tigers in the back and that was absolutely amazing, went to Hoover Dam etc! It's amazing seeing such wonderful sites and their is nothing else like that in the World so it really makes you appreciate things more!!!

I will post some pictures of our Vacation later once my mum has uploaded them onto the computer. I'm going to lay down for now as i'm really tired and my leg is hurting a lot - I really hope it settles down soon and doesn't cause too many problems!!

Thanks everyone for your kind words and support - I really appreciate it!:hug:

Beautiful Inside & Out!
 

Hi Ali,

Thanks for sharing your pictures in your blog. You are a beautiful girl!

Jeanne

Overall, I am glad you had a good time. Vegas can be a very daunting city even to someone who is athletic! It's a 24/7 city that never sleeps!

People, especially family, who don't live with pain don't understand what it's like to live with it all the time. Trying to explain it to them is sometimes a full time job. One way would be to tell them to imagine having the worst toothache they've ever had in their life, multiplied by 1000, all the time. It never goes away. I don't know many people who've never had a toothache.

Big hugs Ali for tolerating your dad.

Welcome Home Ali!

I missed you! I am glad you had a good time in Las Vegas!

Your Dad isn't feeling the pain like you are so he doesn't understand what a tremendous effort it was for you to walk at all. Neil, my hubby helps me with so much but yet he still doesn't completely understand just how much pain I am in..
He's off working on our property out at the river and here I sit at home hurting because I am not there too.. It feels as if life
and everything important to me is slipping away...

I am delighted you are back!

Hugs,:hug:

Pauliana

Dear Ali,

Do you have lymph node selling in your RSD leg??

Hugs, Roz

Hi Ali,
 

Glad you are back my Dear.

The pictures of you are beautiful.

Glad you had a great time even though you had some difficulties.

Ada

Ali,
I am SO glad you are home safely. I'm so sorry your Dad couldn't be more supportive of you. I know how disheartening that must be for you. Perhaps it is just hard for him to accept how disabling your disease is because he doesn't like to think about his little girl in so much pain?? I am not trying to make excuses for him, only trying to make some sense of what seems to be "insensitive" behavior on his part. Some men and fathers just have a harder time expressing themselves than women do (please, no offense intended to our wonderful SENSITIVE men on this forum!!). Anyway, I am glad you had fun otherwise. We certainly missed your sweet presence here!!! I hope they get the swelling under control on your leg. When do you go back in to PT??? Please try to rest over the weekend, keep yourself calm and relaxed after your busy trip, and keep us posted when you're able on how you're doing. Love you, honey!!!

Thank you all for your kind words - I really appreciate them!!:hug:

I don't feel well at all really today. I think I am paying a lot for what I did whilst I was on Vacation as my leg has really swollen up and the pain has gone up a lot. I'm getting a lot more colour changes at the top of my leg which I was never getting before, it looks as though my leg has been really bruised and is red and blue in places! I have been asleep most of the day although I have been waking up quite a lot from the pain as i'm not able to get comfortable lately.

I'm really not sure what is wrong with my dad. He is REALLY verbally abusive towards my mum as well - he will always moan at her for being slightly overweight and call her fat and ugly which really upsets her and makes her confidence really low. If we say anything to him, he will just say that he thinks my mum needs scaring into loosing weight without actually realising that what he is saying is making her worse. My mum has tried to get him to leave the house but he wont and at the moment, we don't have enough money to afford any legal action. It is really frustrating as one minute he will be OK and the next, he will just flip and turn really nasty towards either me or my mum. I really wish he would go and speak to my PM Doctor but he wont - he has only been to the hospital 3 times in the 2 years that I have had RSD and it really upsets me!!!

Roz - I'm not sure if I have Lymph swelling. I spoke to my PT's about it a few months ago when it first happened and they were really concerned and thought I had either a blood clot or Compartment Syndrome and did an urgent Ultrasound. The tests came back OK but showed lack of curculation in quite a few places. My PT's and Doctor have mentioned Lymph Node Swelling and I have been given lots of exercises to do to try and reduce it and my PT's also massage my leg to try and get rid of the swelling.

I'm not sure when I am back at PT next. My PT's told my mum to call them and they would try and arrange an appointment. I'm hoping I can see them soon as I want them to check my left arm to see if it is RSD as it isn't getting any better at all - it seems to be getting worse if anything. I'm due to go onto the Intense PT Program in April but i'm not sure if we are going as it didn't help last time.

Thanks again everyone and I will post some pics from Vegas soon!!

Hi everyone,

Here are a few pictures from our Vacation - I hope you all like them!! I'm sorry for only just getting round to putting them up - I have spent the last 2 days in bed as i'm in a pain flare and not feeling too well.

My mum with some lions!!

http://i381.photobucket.com/albums/o...Picture188.jpg

Me with the Lions!!!

http://i381.photobucket.com/albums/o...cture189-1.jpg

Me on a Lion!!

http://i381.photobucket.com/albums/o...cture192-1.jpg

Me Singing on American Idol in Madam Thusaurds (Wax work museum!)!

http://i381.photobucket.com/albums/o...Picture125.jpg

Me again on American Idol!!

http://i381.photobucket.com/albums/o...Picture124.jpg

My mum with Johnny Depp!!

http://i381.photobucket.com/albums/o...Picture116.jpg

My Dad Boxing!!

http://i381.photobucket.com/albums/o...Picture126.jpg

Me with a giant M&M outside M&M World! That store is amazing ... it has 4 levels of things all to do with M&M's and even it's own simulator/ride!!

http://i381.photobucket.com/albums/o...Picture159.jpg

More Pictures!!! ...

Me with Zac Efron from High School Musical in Madam Thusaurds!!

http://i381.photobucket.com/albums/o...P1000141-1.jpg

Me kissing Zac Efron ... if only that was real lol ...

http://i381.photobucket.com/albums/o...n/P1000142.jpg

Me Playing Golf in Madam Thusaurds!!

http://i381.photobucket.com/albums/o...n/P1000145.jpg

Me on an Harley Davidson!!

http://i381.photobucket.com/albums/o...n/P1000146.jpg

My dad on an Harley Davidson!!!

http://i381.photobucket.com/albums/o...n/P1000147.jpg

Me with the first man on the moon!!

http://i381.photobucket.com/albums/o...n/P1000151.jpg

Dolphin having it's Blood Pressure taken - that was really fascinating to watch!!!

http://i381.photobucket.com/albums/o...n/P1000063.jpg

Dolphin Singing at the Mirage Hotel - that was soo cute to hear!!

http://i381.photobucket.com/albums/o...n/P1000255.jpg

Dolphin singing ... I love this pic!

http://i381.photobucket.com/albums/o...n/P1000261.jpg

White tigers! The Zoo Keepers explained to us that these tigers have a pigment condition that makes them white!!

http://i381.photobucket.com/albums/o...n/P1000220.jpg

White tiger - I like this pic as he looks sooo cute with his mouth hung out!!!

http://i381.photobucket.com/albums/o...n/P1000232.jpg

Leopard Cub that I fell in love with and wanted to take home with me ... he is 3 months old and sooo cute!!!!!

http://i381.photobucket.com/albums/o...n/P1000249.jpg

Hoover Dam

http://i381.photobucket.com/albums/o...n/P1000163.jpg

Me stood at the Hoover Dam - it really hurt my leg there as it was really hot!

http://i381.photobucket.com/albums/o...n/P1000158.jpg

Bridge on Hoover Dam!!

http://i381.photobucket.com/albums/o...n/P1000156.jpg

Fountains outside Bollagio hotel!!

http://i381.photobucket.com/albums/o...n/P1000170.jpg

More fountains - they are amazing to watch!!!!

http://i381.photobucket.com/albums/o...n/P1000172.jpg

Wonderful pictures...

I loved the M & M one!

Looks like you were really busy!

Thanks for sharing!

Me eating Chocolate Brownies and Ice cream in Planet Hollywood - they were sooo good and massive - my dad ended up having to eat the rest for me as they were that big!!!!!

http://i381.photobucket.com/albums/o...n/P1000194.jpg

Fountain Display in Hotel

http://i381.photobucket.com/albums/o...n/P1000106.jpg

Hotels on Strip from Stratosphere Tower

http://i381.photobucket.com/albums/o...n/P1000177.jpg

Me stood near fountains in Caesers Palace

http://i381.photobucket.com/albums/o...n/P1000193.jpg

Me and my dad up Stratosphere Tower!!

http://i381.photobucket.com/albums/o...n/P1000292.jpg

Manatton Express Rollocoaster that me and my mum went on at New York, New York - it was fun but REALLY hurt my leg!!!!!

http://i381.photobucket.com/albums/o...n/P1000187.jpg

Ride that I wanted to go on on the Stratosphere Tower but chickened out of because it was really windy and I knew it would really affect my RSD. This ride hangs you 900ft in the air at a 45 degree angle and you only have a lap bar holding you in!!!

http://i381.photobucket.com/albums/o...n/P1000131.jpg

Me with my Juicy Couture bag in Caesers Palace - this was the only store we could afford something in as everything else was sooo darn expensive!!!!!

http://i381.photobucket.com/albums/o...n/P1000058.jpg

Great Pics
 

These are great pictures, Ali. Thankyou for sharing. You are a very beautiful girl. It looks like you had a great time. I hope things are settling down for you since your trip. Take Care...Di

hey ali
im glad that you had a good time in vegas love that place alot lol im so sorry that our rsd is behaving badly .i wish that it just would of stayed calm for you. your pictures are great. im so sorry that you are having so much pain. do blocks or anyhting like that help you at all.?

carrie

Thanks Carrie for your kind words and PM'ing me - I really appreciate it!!:hug:

I have had a nerve block before and it made me a lot worse. My PM Doctor injected directly into my RSD leg with a drug called Guanethidine and I developed complications and was left wheelchair bound for 13 months. My Doctor didn't know at that time that you should never inject into an RSD limb unless you absolutely have to and it was only when I had the block that my mum found an article on the internet stating that so it was too late by then unfortunately!!! Since that time I haven't wanted any blocks and my doctor wont do them although I did have a Ketamine epidural last year and got some good results from that although they only lasted about 5 hours. My Doctor never did another block after then for some reason - i'm not sure why!!

Thanks again and I hope you're doing OK!

yes never into the actual rsd limb i get either SGB or lumbar blocks and that is it. blocks only las on me for a few hrs at best. on your pt do you warm water pt or anything like that. i used to be able to do it and it helped alot . i cant anymore. im really sorry your having such a time of. it i was young like you and unable to walk or school or anything like that and it was horrible and like your father all my supposed friends treated me like that and it was devestating at best. keep your head up hun. im praying for you.

Thank you so much Carrie, I really appreciate your kind words! hug:

I'm so sorry to learn that you have had RSD from such a young age also. It must have been really hard for you having to cope with school and things as I know it is for me also. I'm sorry that your friends weren't supportive to you either - it seems like a lot of us have to deal with that also unfortunately. My friends left more or less as soon as I developed RSD and they realised I weren't going to get better any time soon and it really hurt me and made me really depressed.

I have tried Hydrotherapy and Aquatherapy but it didn't really help for me that much. My PT's at Great Ormond Street Hospital want to try it again though and they are the top PT's in the country for treating RSD so hopefully they will be able to help. There isn't that many pools and PT's round here that do Hydrotherapy really so it makes it really hard to try and find somewhere suitable to go! I'm due to go onto the Intense PT Program again in April so I am hoping that the PT's will be able to help me if we are definitely going otherwise I have been told that my leg will need casting to try and correct the Dystonia. I really don't want to have my leg casted as I have read so many horror stories about it!

I'm thinking about you and if you ever need to talk, please feel free to PM me because I DO understand some of what you are going through! Thinking about you!:hug:

yes it was hard as a teenager and 11yrs ago there wasnt very many rsd docs at all in the states i dont know if you know betsy from rsdhope she and i were friends years ago she sent me to her doc in chicago dr tim lubenow and he was a god sent taught me basicly how to learn to live with my rsd and differnt meds. never got pain meds till i was in my 20's so yes i know about how hard it its. and by the time i got DX it had already spread to all four limbs .

i will pm you later i hope that you start to feel alittle better soon

carrie