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!), 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!

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,

Pauliana

Dear Ali,

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

Hugs, Roz

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!!

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!!



Me with the Lions!!!



Me on a Lion!!



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



Me again on American Idol!!



My mum with Johnny Depp!!



My Dad Boxing!!



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!!

More Pictures!!! ...

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



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



Me Playing Golf in Madam Thusaurds!!



Me on an Harley Davidson!!



My dad on an Harley Davidson!!!



Me with the first man on the moon!!



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



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



Dolphin singing ... I love this pic!