darlaa
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| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 06/14/2009 05:00 PM |
| Last Online | 02/11/2013 11:51 AM |
| Gender: | Female |
| State: | Ohio |
| Website: | http://www.crpsadvisory.com/dareid007 |
| Blog: | see below. |
| A little about me: | I WILL NEVER STOP FIGHTING all the health problems I have. I am determined to make my life as successful as possible. Most of the people that come in daily contact with me have no idea what I deal with daily. I am a college student with RSD, bad scoliosis, and Crohn's disease. I was diagnosed with RSD in 2005 and Crohn's disease in 1998. I am now 23. I had RSD for a year and a half and 6 different doctors before they were able to figure out what it was. The RSD spread from my right leg to both of my legs, toes included. I missed over 300 days of high school due to the RSD and Crohn's disease, but was able to overcome this all and become valedictorian of my class despite the continuous trouble from teachers due to my extended absences. I am now pursuing a pharmacy degree. I would like to do some research on RSD before I graduate as well. I am hoping to get funding through the honors college at my school for the research. I inherited the Crohn's disease from my father, and he got it from my grandmother. I have just recovered from a year long flare up with this. Remicade helped me a lot, but due to the severe side effects of this drug, I have chosen to quit receiving treatments since I am now feeling better. The scoliosis in my back prevents me from being able to lift heavy things and causes me neck and back pain. I got RSD from a softball injury - a line drive hit my leg. It was bruised for many years, swelled up, and my whole leg turned yellow, purple, and black. I am very sensitive to the cold, so I went away to school in the south. It has helped a lot! I have had 5 lumbar blocks, which didnt work, and 6 ketamine treatments. the ketamine infusions have been extremely helpful, providing enough relief (with the help of muscle relaxers and pain meds) to attend school, although I fight my battles with these conditions daily. I went through a 2 year remission once I came to SC for college, but have had interruptions since with crohns, rsd, and scoliosis. lately I have had to two grand mal seizures as well with no known cause. Life is hopefully going to get better! If you want to know anything else, just ask! |
My Awareness Ribbons
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"Here's to battling RSD daily and not losing hope for the future" |
"for my family & I in hopes that we can kick the shit out of these conditions" |
"my aunt being a rockstar and beating this horrible conditiong & hopes that I do not get it!" |
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| Awareness Ribbons | ||||
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My Hugs
 | Sending much love, care, healing prayers and thoughts out to each of you. I've missed you and the time many of us shared together. Just diagnosed with Gastritis by ERCP 2 days ago. My stomach a lining is extremely inflamed and swollen. A biopsy was taken, stones found beneath my liver and the gall bladder tissue regrowth. My gall bladder was removed nearly 15 months ago. Needles to say the pain is horrible in addition to CRPS. I will be getting the photos from the RSDSA SF Conference edited onto my blog soon. I promise! 2 procedures and a surgery to go. As always I wish you pain eased days and nights, please always be as well as you can be. Warm wishes, ~Twinkle V. Sent from Kindle Fire |
| Dear Members of the RSD Support Group, This hug comes from all of the new group leaders at the RSD Support Forum. We are sending you this to let you know that we have renewed our commitment to provide a safe and comfortable place for you, our members, to receive the love and support that is so needed when suffering from CRPS/RSD. Our new leadership team has developed a Mission Statement we would like to share with you: "To provide a safe and enjoyable environment for group members; encourage participation; and guide members to follow rules and terms of the site with a gentle hand." ​We see our main​ job ​as ​ ensur ​ing that this forum is a positive experience for all members: a place you can find friendship, learn about ​our condition, and find ​a safe ​ space to express your experiences ​and feelings​ . You can read about our new, simplified group rules here: http://www.mdjunction.com/forums/reflex-sympathetic-dystrophy-discussions/general-support/10635134-welcome-message-and-group-rules-for-the-rsd-support-group, and read about ​each of ​ our goals for the group in our leadership profiles here: http://www.mdjunction.com/reflex-sympathetic-dystrophy/group-leaders We hope that you will come on by for a visit, read some posts, write some posts, and make yourself at home with us. We are here to serve you! With Love, Peace, and Aloha, Howard, Jenny and Julie |
| Dear Friends, I am writing to let you know that I have volunteered to co-lead the RSD Support Group. I feel very strongly that this syndrome is under-funded for research, that many doctors remain unaware of the symptoms of this condition (the average patient sees 5 professional medical providers before they are diagnosed), and also that the general public for the most part has never heard of this condition which afflicts 50,000 new patients every year in the USA alone. How many of you have tried to tell a friend of family member about your condition, and been met with a blank stare? I hope to make a positive contribution to this site through providing information in posts and continuing to expand our Resources section. I pledge to be here for you as a friendly ear, so that you know that you are not alone in your experience. I would like to see this group thrive as a welcoming community, where we can explore the ups and downs of this condition in a safe environment. We can make a difference in our own lives and in the lives of other CRPS/RSD patients by being better informed about the syndrome, and by sharing that information with our own community of doctors, friends and family. I am particularly interested in alternative and complimentary tools such as those used by Rev and offered at many pain management clinics ~ such as meditation, relaxation techniques, and volunteering to help others. There are things that WE can do to help ourselves reduce our own suffering. I will need your patience and a little coaching along the way as I am new to being a forum leader. I will sincerely appreciate any feedback from my co-leader Craig and from any and all members. If you have any suggestions or ideas, please feel free to contact me because this is OUR group, and OUR community, created and sustained by OUR participation. Thank you for this opportunity to be of service, Mahalo, Jenny |
Give darlaa...
My Diary
my thoughts
this is what i think about, but feel i cant share with people other then you guys because many don't understand
this is what i think about, but feel i cant share with people other then you guys because many don't understand
| Title | Date | Views | Comments |
| rsd end of the road & seizures | 07/17/2012 | 138 | 0 |
| regret | 04/20/2012 | 162 | 1 |
| more doctors | 03/20/2012 | 189 | 3 |
| pain pump & support | 02/25/2012 | 166 | 2 |
| no quick fix/cure | 02/23/2012 | 192 | 2 |
| just when you think youve won, the battle's just begun&dating | 12/26/2011 | 226 | 0 |
| familial support | 05/10/2011 | 191 | 3 |
| rock and hard place | 04/24/2011 | 239 | 2 |
| A set back with insight | 04/07/2011 | 168 | 0 |
| reality is setting in | 04/01/2011 | 258 | 3 |
My Health Topics Contributions
I started discussions in the following health topics:
Diagnosed in august.
Diagnosed in august.
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My Support Groups
My Friends
My Recent Posts
| new to group | 07/17/2012 | ||
| intrathecal pump | 07/17/2012 | ||
| I HAVE to share this with you ... | 03/27/2012 | ||
| Running, Diet and Crohn's | 03/27/2012 | ||
| RSD and Music | 03/27/2012 | ||
| no quick fix/cure | 02/29/2012 | ||
| pain pump | 02/25/2012 | ||
| no quick fix/cure | 02/23/2012 | ||
| no quick fix/cure | 02/23/2012 | ||
| Just spent 5 days in the hospi... | 12/27/2011 | ||
| medications, RSD, & sensitivit... | 04/11/2011 | ||
| medications, RSD, & sensitivit... | 04/11/2011 | ||
| medications, RSD, & sensitivit... | 04/11/2011 | ||
| other issues perhaps associate... | 02/04/2011 | ||
| other issues perhaps associate... | 02/04/2011 | ||
My Articles
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