Hi friends! I did go to my nephew's wedding reception. My one sister looked at me like I was nuts! when she asked me if I was better?? I said no.. well, she just said "Oh, then walked away"! I don't want her pity, but what's up with that?? Now, I did talk to my oldest sister (she's the mom of my nephew who just got married on 7-7-07 .. How cool is that? LOL ok anyway we talked and here, her mother in law told me her daughter has RSD from a motor cycle accident!! we must have talked for an hour or more. I just love her! ok, now I hurt so bad, as a lot of people who didn't now I had this or did know?? hugged me, and friends.. let me tell you I am in such pain!! darn weddings LOL well, hope everyone had a good week-end.. me?? I'm crawling back to bed. It's 94 degrees here in Ohio, I have my central air up and now, I need another nap. this sucks when you have to keep on going to bed, taking naps. today I was in a deep deep sleep for an hour! Do any of you friends have to keep going to bed? taking mini naps? or is just me?? love ya all! Love, Desi

Hey sweetie

I am sorry that you are now in so much pain from the wedding - but YOU DID IT!!! That is what matters! and I am really pleased you managed it! (Also, it must have rocked having people there that understood what RSD is). There are always going to be idiots that don't understand what RSD is and who aren't interested in what it is or how it affects you - but get rid of those people from your life, or reduce their impact on your life because they are just not helpful! Naps are a must - I mean - how many people (apart from us lot) survive for months or years at a time with less than 2 hours sleep a night if you are lucky? if other people had to suddenly have our lives, even for a day, then they would soon know how physically and emotionally draining it is to live with chronic pain and that's before you have reached the pain and disability bit!

I don't tend to nap but I do get up for a couple of hours then lie down for a bit, then sit up for a bit then lie down abit etc etc etc...

Right - take care my dear and I hope the flare calms down abit soon!!!

Love you loads!! and sending pain free hugs....

Frogga xxxxxxxxxx

yES I DO TAKE NAPS AND WHEN I DON'T,I BEEN KNOWN TO FALL
ASLEEP AND HIT MY HEAD ON THE COMPUTER,BOY THAT WILL WAKE
YOU UP OR PUT YOU TO SLEEP WITH A BIG BUMP ON YOUR HEAD
WHEN YOU WAKE UP. HA i'M A PNER AND NAPS ARE A MUST.
i BET YOU WERE EXHAUSTED GETTING READY FOR THAT WEDDING,
AND NOW GETTING OVER IT. BUT YOU WENT AND WE CAN'T GIVE UP,
THOSE PEOPLE THAT DON'T WANT TO UNDERSTAND PROBABLY CRY
ALL DAY OVER A HAILNAIL. AND THOSE WELL SOME THAT KNOW
YOU ARE IN PAIN,THEY SAY HOW ARE YOU,AND BEFORE YOU CAN
SAY ANYTHING SAY THAT'S NICE,AND WALK AWAY. YOU KNOW WHO
THEY ARE IT HURTS,BUT IGNORE THEM. i'M GLAD YOU WENT AND
I'M PROUND OF YOU. iT'S REALLY HOT HERE IN MO. AS WELL. BLESS
YOU HEART. tAKE CARE HONEY. sUE

Hi Desi, Glad you made it to the wedding but sorry it came at such a price. As far as telling others about my "condition", the only people I talk with now are my husband and all the nice people I've met here. Other people just do not understand and say things that just crush the spirit. As far as naps go, that is the only way I can function. Every day at lunch I'm back in bed for 1 to 2 hours and by 9 at night I'm in bed again. I feel like I'm sleeping my life away but I'm in a constant state of exhaustion so I have to sleep.So, don't feel bad about needing naps...that's what pain does to us. Hope you feel better soon. Jeannie

Desi
I went to a wedding in Ohio a few weeks ago that I'm still recovering from....an 8 hour ride in the car The best part was I met for the first time someone else who has RSD. It was so nice to be able to talk to someone who actually understood what I was saying...this disease is sooooo isolating.
I can't take naps but I but to help with the lack of sleep at night I take some down time many times a day....meditation is so rejuvenating if I can get myself in that peaceful place.
Jeanne

Hi Desi, gentle air hugs

I tend to NOT be able to fall asleep during the daytime hours. I either have to be sick or the meds kick me into twilight zone. However, during the night, I tend to toss and turn from the pain and can't get completely comfortable. My dreams though are so active I wonder if I am even getting the sleep I need. (Lets see, I have dodged bears & guards with my son in a building and have become Hugh Hefners g/f - woke up though when my mom told me I was being yucky)

Glad you got to enjoy the wedding, sorry you are still hurting.

Hi ya Jeanne! 8 hour ride?? Oh my goodness, I can't stand a 20 min. ride, let alone a 8 mile ride!! I hope ya brought a buddy pillow and body pillow to take with you, sweetie!! Bet it was so "cool" chatting to someone who has RSD like you. that was just wonderful to hear, Jeanne! I need to get back to my relaxing tapes if I can find them in this junky house!HA HA (thanks for the reminder on meditation too!) :0) LOL Love ya and thank you for the nice reply Jeanne! love ya!! Love, Desi

Hi Jeannie! "crushed spirit" is soooooooooo what I received from my sister and a few "other family members, my neice, 2 BIL I come from a large family, and everyone is doing their "THING".. but if the chips are down, they will be here for me!! I hope. I know I was and will ALWAYS be there for them!! Thanks for saying that naps are a must as it is the pain that we need naps for! Thought I was the ONLY ONE who needed them. Now, some days.. when I work around the house, I mean hard exhausting work.. I am good for 10 naps a day.. might even be in bed all day, except to take a shower or a nice epsom salt bath, eat, get in jammies and plop this body in bed and watch t.v. and fall asleep when the first commercial comes on. I wanted to watch this good movie called Little Darlin's (one of my fav. old ones) and fell asleep when the first scene came on.. LOL Oh well, that's the breaks huh.. LOL Love ya! love, Desi

Oh gosh, Sue, you had me really laughing so hard about falling asleep.. then bumping your head on the keys.. bump when ya woke up!! HA HA..ya still a sence of humor there, Lady!! your fun!Oh my yes, sue I was so very exhausted just getting ready for the reception.. to top it off my husband, Bill was telling me to hurry!! my butt.. the weiner ;0) LOL You had me crackin up also about those that don't have RDS, cry most likely if they even get a hang nail!! LOL I will lay low of unsupporting people, my sister too.. if I have to. your right, I don't need this kind of understanding. And when you do try to understand them or tell them a little tad bit about this RSD.. it's like you can see their expression.. like I'm making it up, or I'm nuts, like I wrote in my post. oh well.. their problem.. not mine, eh? LOL :0) I do hope that you feel better soon too, Sue!! Love ya! love, Desi <3

babe! i miss talking to you! you have my sympathy...

i only WISH i could sleep. i've only been getting about 3 to 4 hours of (restless) "sleep" a night since i went off my amitriptyline. it was making me way too tired in the day. either way, i'm a mess.

so, i'm grimacing at all the hugging you received. i can't imagine. maybe at the next wedding you should wear a shirt that says FRAGILE!!!!!

hope to talk soon,
love
ang