not the person you think i am
 

apperantly *edit* there was someone with a similar name . as i am not this person and this probably why i didnt feel so welcomed here i couldnt figure it . i thought that i had said somethign wrong but figured it out. the only way i found out if some of you go to brain talk you found out about vics passing i had know vic for years i was 16 when i got rsd and him and alot of the old timers from the late 90's helped to understand what just happend to me i was scared and off them (you) helped not to be so scared i lost all my friends at age 16 went from being an athlete to not being able to walk let alone go to school. so please understand that i have never in my life started attacks on ppl on any of these forums i ve been around so long i used to go to the mass general rooms and thats were i meet alot of you . *edit* i am here just like you in alot of pain and not anyone to understand how i feel

-carrie

Hang in there.

It's just going to take time for people to know you and accept you.

I hope you'll have a better day today.

Hi Carrie!

Dont know if I remember you from BT, I get everyones names confused all the time lol. Now if I saw everyones faces it would be different, I still wouldnt remember anyones names, but I never forget a face lol.

Hope you get to feelin better :hug:

Carrie,
I am SO sorry you did not feel welcomed here. I see that you joined in December '08......that is the same time I joined. I have never been a member of any other forum before, so I personally don't know if that had any credence as to why you were not being responded to as you needed to be......but I personally welcome you with open arms (I can still move that way!! The RSD is in my feet!) and look forward to getting to know you better in the near future!!

Feel free to PM me any time......I have tremendous compassion for ANYONE suffering from this dreaded disease. We all have enough pain in our lives without feeling like we're getting neglected from our forum family as well!!! Please just know that I genuinely care about what is going on with you, and will always be here to lend an ear or a shoulder!! Please take care!

I respect your willingness to post this. I think it took a lot of maturity not to just get your feelings hurt and leave. Thanks for sticking with us!!! :hug:

Carrie,

Usernames that use the RSD or MS or PD in them can look alike. It can get confusing on who is who.

If your username is that close to someone else, that also gets confusing.

Let me know if you want to change your up a bit. It's not something we do a lot, but in cases like this, it just might be the answer.

( BTW...There is only one of me. :D There have been a few others who have joined who made their names just a tad bit different, and that has confused people, so I know where you are coming from.)

thanks you all i apperciate it. curouse i might just take u up on that offer. thanks for understanding. i think i felt that ppl thought that i was the other person. i makes me feel better to know that you guys care. because i dont have any rsd freinds really left from where i was gone from these forms for so long .. thansk it helps me cope a little better. hope this find everyone in less pain

-carrie

Hi Carrie,

I care about you. I am sure others will join in and welcome you as well. Please don't be hurt or upset. Much Love, Roz

Hello

I am sorry you had to write about that, you are welcome here,
we all care for each outer, no one is left out, ok, so welcome to the board,
and start joining in, we are all like family, here,

peace
and
:hug:
to you
Kelly

Dear Carrie,

I don't know who the other person is that people are confusing you with. I'm sorry to hear that that has caused you any ill feelings on either side of the forums.

Just know that I like you just as you are! I'm happy to see you posting your feelings openly and honestly and fully support you as a new member of our community. I joined the community just last summer and I think it takes a bit of time for people to get to know you. For me I don't always have the time to be online. We all have our issues but everyone is very supportive and caring here.

MsL

Hi angelrsd
 

Hi Carrie, I am Zida from BT. I too was a very good friend of Vic's. I was the one that posted of his passing. I am so glad to see you here. Vic had spoken of you to me. I do remember you. I'm sending out a warm welcome to you. I certainly hope I haven't overlooked your presence here, but if I have I'm here to welcome you back home. I have been going through some unpleasant life situations recently and have needed more support lately than I have given. But I'm here if you want to talk about anything, Vic, the old BT or just anything. Again, welcome home. There are the great newbies and some of the oldies but goodies, and we are all here for you.:hug: Love Di

hey diana
thanks vic will be missed alot he did alot fo good for our community that is for sure. im sorry that your have problems right now. ive been having horrible falre had to have appendix out in early december since then it has been flare time 100 thanks for writing back
hope this finds you well
-carrie

Carrie,
I cannot imagine getting your appendix out with RSD. I had mine out when I was 15 and it was NASTY pain all by itself and a LONG recovery. Are you healing ok from the surgery??? Did they have time to give you nerve blocks before the surgery or was it emergency?? Where is your RSD??

hey mom
well first it was emergency i have really bad pelvic pain / interstital cystis/ endometrois so i thought it was that or stomach virus right after thanksgiving then 2 wks later i woke in horrible horrible stomach pain thought i had the flu it was so not the flu thats for sure i went to work sent the kids to school . by 4pm i was done with work and on my way to er . they had it out in 2 hrs. so no block and worse than that it turned my pump around . but your right i figured that it would kinda be like ob surgery but omg so not it took 3+wks get any better that is why im having such horrible flares now since that surgery it has been hell to say the least .
i had a great surgeon i wasnt near my hospital that my docs are at and i was freakin out to say the least but the insision marks look great
but i still cant belivev how painfull that surgery is

Yes, I can imagine that the inactivity during healing from the surgery didn't help your RSD any. I'm glad they figured out what it was in the midst of all of your other medical issues before it burst. I imagine that would have been TERRIBLE for you to recover from. Have you had your RSD spread since your surgery???

So you have a pain pump, too?? Did you have a SCS at any point??? They have recommended that for me and I think it's way too soon to consider such a drastic measure (I've only had RSD for 2 months).

I'm so glad your incision has healed nicely!! My incision where I had ankle surgery (which is what started my RSD) looks GHASTLY. It is blue and red and gray all around it. My whole foot turns charcoal color when I stand up. The incision is ALWAYS blue and puffy. I WON'T be wearing sandles this summer.

well the insecion looks better than i thought lets say that my husbands says it looks like an alien came out of my belly button i have had to have 2 other lap surgerys so its alittle disfigured anyways but yes it was horrific , yes have pump i couldnt have scs as to i had spinal sepsis when i was 17 and the risk for it reacuring is to high for me to risk it again plus with my rsd being so vast in so many areas i dont know if it would work great. i got the sepsis during scs trial

Oh......I'm so sorry to hear that. How scary and horrible for a 17 year old to have to deal with. Have you been able to find any consistent relief through the years??? Do you like your pump??? How long into the RSD did you have it put in???

yea the sepsis amost killed me they only reason i lived they said is because i was pregnant with my oldest they said the hormons of the pregnancy is what saved my life. i had the pump put in 04 it was at least 6yrs into having rsd .i had put in after youngest was born. i do like the pump they only thing i dont like is that it sticks out. the reason why is a very little person 4'10 and weight 98-100 lbs so it sticks out and i wont wear alot of bathing souts unless it hides it im kinda **** about it . yes i have had constant relife with i stay at ablut 7-8 when im not haivng flares or other problems with my rsd. the only differnt is the fentnyl in it. the intial surgery to put it was a hard surgery but i had to have it changed in march 08 and it wasnt that bad they dont replace the cath line unless there is a problem but my neuro surgeron told me that its harder the second time they changes it i had alot of sweeling
im not a fan of scs its either gona work or not and there so much risk of infection and it took me 3 yrs for them to convince to get it. after having sepsis im scared about surgeries like that that have a higher risk . i know ppl have had good results with and some that havent

Hi and Welcome Carrie,

My name is Loretta and I wanted you to know I'm happy you made your feelings known.
We need each other and all the comfort and encouragement, as well as the good feelings we ourselves have when we know we've been there for others on the forum. I always feel so good when I can share something that helps others. Ii've had this 12 years, wasn't diagnosed for 4-5 years. Just getting over some lesions for the first time. My husband is very supportive and daughter and son in law. And of course, Sabrina, my kitty. Please let us know how your recovery of the surgery is coming along. I had that when I was 13. -a tough one. Hope your system calms down soon. Take care, Loretta