Quote:
Originally Posted by screwballpookie
Hey all,
I just want to ask a quick question cuz I don't want to take up a lot of you alls time. My legs have gotten worse as far as the pain goes it has gone from mm feet and lower legs to just above my knees now. My original injury was to my left hand which has been diagnosed with rsd from my left hand to my shoulder. I have the same pain and reactions in my right hand as well as my lower legs and feet. Like I said now the pain has moved to just above my knees and I have a hard time putting any sort of pressure on my legs and feet. It started yesterday just above the knees and I figured probably just a flare but it is the same today as yesterday. I am scared because I have not been diagnosed for my right hand nor my feet or legs yet. I am waiting for my atty. to tell me it is ok to see a doc. My authorized doc acts like he don't want to see me even though he is the one that finally diagnosed my rsd after 3 years of struggles. Now he is telling me that they don't deal with legs of feet. So I question what does he do when he treats other people with rsd and it spreads on them. I don't know anymore. I am so confused. Also my daughter and her boyfriend put my walker up for me today and told me to try that and see if it is any easier to walk with. I was so scared cuz I am not ready to see the reality of things that there is a chance I am getting worse. One good thing that came out of it is that I found out my daughter is not ashamed of me even when using the walker. I have not been out in public with it yet and I am scared to death. I feel like I am going to such an outcast and that things are going to be even more real. I don't want to feel that way. So I am really struggling with this whole walker idea. Has anyone else had to use a walker or felt like an outcast? Has anyone ever been afraid of the raeality of things. I know I have been fighting rsd since 2002, but everytime a new reality shows up especially one as big as this one it is so hard to accept myself and the reality. I am so afraid that people are going to look at me and laugh. Or maybe even not love me anymore. I am so scared of all this reality. I know a lot of you are thinking that this is no big deal but it is to me. I am still struggling with the idea of having this disease and now this. I am so afraid of losing all the ones I love and care about due to this. Please help me try to get over these fears?!
Sincerely,
Tracy  |
Hi Tracy,
I'm so very sorry you are being slammed with this reality or at least set
back. You are being hit in the face with possible reality of possible partial disability and that is scary. So you belong to a support group?If you look up RSDSA and see support group on the left, push that and a area will come up to put your zip code in. It wll give you closest phone number and name to call. They will tell you a contact name and number. You need to talk to someone that has gone thru this transition. I don't know, but you may have been raised with the idea that crippled people are 'less than' maybe you have hearad negative comments about people that are crippled etc. That impacts us and puts fear in us of being 'less than' 'not accepted' 'not loved'' 'like you said embarrassing to our loved ones'
From attending a support group, we can learn the names of Drs. that deal with issues like this. Calling the local hospital and talking to the education department, may lead to an upcoming seminar dealing with issues like this
Having a counselor can be life altering. I have had two wonderful counselors. One in the 80's when both my parents died young for 2 plus years. Going sometimes 2-3 times a week. And about 5 years ago, when my neurologist diagnosed me with generalized or full body RSD. I didn't like his two recommendations, so found my own. If fact, in the 80's I searched.
Having RSD and spreading is actually dealing with a major life change-grief- Even going to the self-help section of a book store can help. We go thru the 5 stages of grief, as does someone who has a loved one die.
I'm going to buy the book by Michael J Fox 'Always Looking Up' about his adjustment to Parkinsons Disease. He hid it for years, until he couldn't hid the shaking any longer. He went public and talks about his coming to acceptance, and now helping others. I'm anxious to get it.
It's wonderful you are honest about your feelings. Have you ever journeled? That can put us in touch with our feelings, identify them and learn how to work thru them.
Please know we are here for you. If your Dr. sounds like he doesn't want to see you, he probably doesn't. Get a new Dr. That's where local mingling can help to know who is good and who to stay away from. There are many Drs. that don't want to be involved with patients with RSD> Do you have a sports injury group near you? National athletes? College athletes? Do you live close to a group? Calling a local hospital, education dept. can sometimes be helpful as they have commuity lectures of different areas that can cross over and be helpful to us. Take care, your friend loretta soft hugs
