RSD Outreach awareness

My Story..........By Lizzy

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My Story..........By Lizzy

Post  byrd45 on Wed Nov 12, 2008 10:11 am

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From: Littlelizzy2131 (Original Message) Sent: 4/28/2005 2:45 PM
Thank you for reading this. I have had several operations on my foot. After one of the surgeries I told the doctor that I felt like my foot was on fire. And he ignored me. I walked on it for a year with extreme pain. Then I went to a different Dr. who said that there was a screw holding down my tendons and nerves. He did another surgery and sent me on my way. I was diagnosed in 2002 and I was told I had Complex Regional Pain Syndrome which meant nothing to me. I had no idea what it was. So I didn't do much follow up. I then took action and found another Dr. by this time the RSD has spread to my right foot. It was too late. I tried 6 Lumbar shots and alot of meds. I had a Spinal Cord Stimulator implant 2 years ago and have had to have adjustments made through surgeries 3 times. I continued to work because I am a single mother. My daughter is now 18 and moved out. I am on "Temporary Disability" and the company I worked for just fired me. i don't know what to do. I can only pay Cobra another month and am close to losing my car and my Apartment. I think that if I would have known what RSD meant, I could have treated it early enough. The only way I found out what it was is through the internet. My Dr.s didn't tell me much. And I thought that the pain meds where the reason for the sensitivtiy to light, memory loss, dry eye, trouble speaking so I deprived myself from the pain releive I should have gotten if I would have known. I am a single woman with no family that will listen to me about this disease. I think it is very important that we make RSD a household name. I now spend my days calculating everything I think I can do that day. And lots of days in bed. This is the first time I have joined a group. It really helps to talk about it. It gets very lonely.
Thanks for listening!!!



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From: byrd45 Sent: 4/30/2005 9:59 AM
Hi Lizzy,
Thanks for sharing your story! They should have explained things to you..I am so sorry for what you have and still are going through. I would like to suggest applying to SSI for permanent disability. Do you have any papers from any of the doctors who say you have RSD? That would help alot and if not I would suggest asking for a copy of your records. We are all going to help you see this through as best we can. It stinks that your family isn't being very supportive,but unfortunately I know that happens an awful lot. A lawyer would also help and I would consider going on state assistance in the meantime so you won't lose your housing or insurance. Alot of people have to do that and there is no shame if you do need it. You have a disabling disease and that is through no fault of yours. After all if any of us could choose different lifestyles I am sure we would, but we don't have that luxury so we handle things the best we can. You are a survivor remember that and you will see all this through and you have the bunch of us cheering you on. It is great to have you here! I am so glad you found your way here.
Love,
Robyn


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From: Littlelizzy2131 Sent: 4/30/2005 10:24 PM
Robyn,
Thank you so much!! I do have papers from Dr.s stating that I have RSD. State assistance is really hard to get in California. But, I am going to try. What type of lawyer do I look for?
Thank you again for taking the time to listen. now that I'm not working I would like to help get awareness out there. Do you have any suggestions?
Lizbeth


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From: byrd45 Sent: 5/2/2005 8:37 AM
Hi Liz,
How are you doing today? I am keeping my fingers crossed that they will give you state assistance. Take some info about RSD in case they aren't aware of what you are talking about.I was wondering if you were hurt at work or if you were hurt on your time but then had to go on short term disability because of the RSD getting so bad? If you were hurt at work then you would need someone who does workmans compensation Law and if you are trying for SSI then you would want someone who does Disability cases who need to get SSI. I wish you luck either way and let us know how that turns out for you. Another thought,if you have trouble getting assistance from the state you can go to your local senators office and tell them that you are one of their costituents in that area and you need their help. Going in person really does help more than just a phone call. That is how I got my son help from the state when he was little and needed it. Go check out awareness ideas right here in the support group and there are alot of ways you can spread awareness. Good for you for wanting to spread the awareness! I also give out information anytime I get a new doctor or medical procedure done. You are welcome to print out information from our main website for this purpose.Let me know how that works out for you!
Love,
Robyn


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From: Littlelizzy2131 Sent: 5/2/2005 8:21 PM
Robyn,
I am having a very bad day. The pain in my foot woke me at 3:00a.m. and I couldn't go back to sleep even with the meds. I went to my water therapy this morning and than to the Dr. I had so so much pain in my feet and back that I could not even stop at the store. I have been in bed the rest of the day. I am so glad that I found this web site. It has save my life. It is nice to have someone to talk to and care. How are you doing? You are very kind to take the time for people. My Dr. said he will keep me on temp. disb. for a year and see how I do after that. I was not hurt on the job. It was so hard when I was working I had to for my daughter. I am going to take your advise on all the info. Thank you so much. One of my sisters said that she will help me with my bills for the next couple of months. So that is a big help!!!
Thank you,
Lizbeth


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From: glendapullum Sent: 5/2/2005 9:42 PM
Hi Lizbeth
I love my water thereapy I've been doing it for about 10 yrs I go twice a week .Thats super that your sister will help ya out .My mom has helped us out a couple of times .We always counted on my income to get us thru the winter as my hubby does highway construction and when the weather is bad he doesn't work which sometimes can be allot of days.
well hope your days will be better and you'll have low pain
hugs and prayers
glenda



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From: therese521 Sent: 5/3/2005 12:14 AM
Lizbeth,

Sorry you're having such a bad day. My RSD started in my foot (I've had
it for 10 years now). I do have a suggestion. I use Lidocaine patches.
They're based on the same "anesthetic" that they use when dentists work
on your teeth. It definitely doesn't take the pain away, but it does
take the edge off for a few hours (you keep them on for 12 hours at a
time, and put them right above the area where the pain is). I really
think it's worth talking to your Dr. about. They especially help at
night, so that you don't feel that REALLY awful pain and you can get to
sleep.

Please remember when you're having a bad day like this that there are
lots of us out there praying for you. Hope tomorrow is better for you!

Love,
Therese




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From: byrd45 Sent: 5/3/2005 10:47 AM
Hi Liz,
I am so sorry about you being in so much pain. Is the water therapy helping? I loved going because it made me feel a little better after being in the warm water. I hope it helps bring the pain under control some. I am doing okay today. Been feeling real bad for a few days from travelling in the car to see my son. It was worth it though. Today I am going to a new doctor that specializes in RSD. I am hoping to be able to have her see me once a month so she can check on my RSD. I have a great doctor but he is so busy that I only get to see him once every six months. He would still be my main doctor though. I am glad your sister offered to help you that way. She must be a great person! It is great to talk to you too! None of us should ever have to feel alone. I know before I started this support group I felt alone too. I appreciate everone here too, and it really does help to talk to other people and give and get support!
Love,
Robyn
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