Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 Hey, you are going to be proud of me! I called and had an apt for 10/30; I called on Friday, said I cannot wait that long; this doc only sees patients on Tuesdays, so girl said I will talk to his coordinator and see if they can squeeze you in; came home today, at 4 pm, no message. So I called again, said, I may have pappilodema, and I need to see someone NOW. So I am seeing him at 9:30 tomorrow! I probably don't have it, but you guys have scared me to death!! LOL I don't have the "clouding over" that you talk about, but I do have the constant blurring, and I rub my eyes constantly; this never happened before. So we'll see! Marie Hi Hi and thanks for answering Marie's question because I couldn't really remember after 7 years. My eyes would cloud over and go white and I also had a constant ache behind them. Just for trivia buffs, the reason why a doctor will always be able to tell that you had papilledema (in American) is because the optic disk goes pale when it shrinks back to "normal". This happens if it atrophies for any reason. Sorry, I'm just a know-it-all! But the real question is: MARIE HAVE YOU SEEN A DOCTOR YET? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 JeannieA, I remember talking to you the first time you posted. I've had many knee surgeries too and feel for you that you cannot do anything to fix your knee. I don't know if you remember what I wrote back regarding your family and their understanding so I figured I'd write again. With all the name confusion you may not have realized I was speaking to you. I just bought a book from the RSD Association website - it's called Living with RSDS. I've read a few chapters now and it is really good about explaining how you are feeling and it is written by a patiend and a doctor so you get both sides. The "technical" parts are written very well for non-medical people to understand. I thought maybe you could buy it and read it with your family, or read it yourself and then give it to your family to read. What I'm doing since my family is long-distance is I'm reading and highlighting the parts that best explain what I am going through and what the disease is from the doctor's writing. When I'm done I'm going to send it to my family so the can read it and see what I highlighted, and hopefully understand a little better what I'm going through. This might work for your family as I'm sure they want to help and support you but they can't know what you are experiencing. It's just a thought and may help you and your family. The website is www.rsds.org and I think the book was 12 or 15 dollars. I hope that you are feeling ok and I look forward to getting to know you better. <hugs> Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 JeannieA, Im so sorry to hear about your struggles I know the feeling and if you need to talk in private ill be there just let me know. There are alot of people in this group going threw the same things. So if you need to vent or having a very bad day let us know. JB ( jeannie) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 JeannieA - You sure have had a full plate. As you approach having the SCS trial be sure to talk to folks here. Many of us have an SCS and can help you know what to expect. BarbaraJeannie wrote: Hi,My name is JeannieA, I am from OhioI am sorry for all the name confusion, tried to see how to change my name and I couldnt figure it out.I have had RSD since my last knee surgery in the spring of 2002. I had several knee surgeries due to a work related injury on 3/17/2000, now I cannot have my knee replacement, so I am permanently disabled with my knee. It took over a yr for w/c to approve the RSD as my employer fought it, I am a LPN and worked for Interim Health Care, they had no workers comp coverage and were not self insured so they pay penny for penny for everything. They do not remember or care that I was a good employee and dependable, I feel all they care about is their money, and that hurts. Because it took so long for me to get to a specialist (I am poor and no insurance, couldn't go myself) it has spread, now from foot to abdomen on right side. I have the sensation as if you hit your elbow (crazy bone) and it drives me nuts, I can't wear pants or underwear when its at its worst, and that confines me to my room with the door locked so kids don't walk in on me....how depressing!! I cannot have my leg dependant setting as my foot swells and leg and foot become purple . And pain is intensified, this also keeps me from walking much. I am so forgetful and repetitive, my family jokes about me having alzheimers...that hurts me, as my memory worries me a lot and I feel like a idiot most of the time. I feel my life seems so limited. I have gone through feeling useless and a great deoression, the cancer has made me glad to be alive, realizing my family loves me just as I am.I am 44 and have been so limited since I turned 40. I am happily married, have 6 children (5 living) I had 3(2 boys and 1 girl), and adopted hubbys 3(2 girls and 1 boy) when they were small, My youngest son (adopted) is 16 and had adhd and ODD, bordering on sociapath, he is very difficult due to mental illness and his decision making skills are that of a 5 yr old. My only biological daughter -my beautiful ANGEL, commited suicide when she was 15, this was in 1993. I was a homecare LPN, mostly pediatrics. I am a christian, and my faith has kept me from taking my life from the RSD. My family is great but they have no clue as to how i truly feel, I don't think anyone could unless they experienced it. I am so glad to have found a place where people understand,I have RSD, fibromyalgia, post colon cancer surgery, depression,anxiety attacks, disabled...fractured knee cap etc. to knee, I am on ,lamictal, efforex, percocet, duragesic patch, prevacid, myrlax Treatments so far,multiple medication changes, have had epidural, blocks, soon will get trial scs Community email addresses:Post message:RSD-CRPSofAmerica Shortcut URL to this page:http://groups.yahoo.com/group/RSD-CRPSofAmerica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2004 Report Share Posted April 15, 2004 JeannieA I am one who started asking who was who and who had what as with basic same name and spelling only difference just hard as you know with our memory being less due to meds. I am fairly sure responded to you as recall your writing about the rsd going into abdomen and I wrote about my daughter starting in foot and going into upper thigh etc.......so do not think anyone has neglected you and I am still over 100 emails behind and just trying to keep up and write some quick notes about each person new so can rewrite them and have way to know who has what and not get confused with names. It is like now two JoAnn's and two Tammie's and sure was hard for me at first when saw replies who they was either writing or who they were replying to since knew I had not asked and just gets hard when same names. That is why S went to Lin so we could know who it was writing. I am so sorry about the rsd, cancer which surely pray is in remission now!!!! and the lack of medical insurance which is just scary. I really hurt for you as could easily find myself there when my husband retires. SO please know that this digest is one that does care just that there are times we just get caught up in our problems that cannot see past them to help others and also so many new people can get confusing what problem goes with which person with same/similiar name. Is not a slap in face or lack of caring at all, is just we all struggle and we all want and need help and hope and expect it right away and when does not happen then we conclude we are not important and that just is not the truth. So please remember that and know we do care about each person here and we try to give support to each person and sometimes we miss emails. Can be many things that happen to cause people to not respond quickly enough. Please hang in there and so sorry you are struggling JeannieA and hope the weather is not causing your body to hurt more. Take care my new friend. s Momma' JoAnn Sign this way so others know which JoAnn is writing. hi > Hi, > My name is JeannieA, I am from Ohio >> I cannot have my knee replacement, so I am permanently disabled > with my knee. > they had no workers comp coverage and were not self insured , I feel all they care about is > their money, and that hurts it .has spread, now from foot to > abdomen on right side. leg dependant setting as my foot swells and leg and foot become > purple . And pain is intensified, this also keeps me from walking > much. > the cancer has made me glad to be alive, realizing my family loves me > just as I am. > . I am happily > married, have 6 children (5 living) I had 3(2 boys and 1 girl), and > adopted hubbys 3(2 girls and 1 boy) when they were small, > . My only biological > daughter -my beautiful ANGEL, commited suicide when she was > 15, this was in 1993.a > christian, and my faith has kept me from taking my life from the RSD. > My family is great but they have no clue as to how i truly feel, I > don't think anyone could unless they experienced it. I am so glad to > have found a place where people understand, > I have RSD, fibromyalgia, post colon cancer surgery, > depression,anxiety attacks, disabled...fractured knee cap etc. to > knee, > soon will get trial scs > > > > > Quote Link to comment Share on other sites More sharing options...
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