RSD Outreach awareness

Thank You........By Therese

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Thank You........By Therese

Post  byrd45 on Wed Nov 12, 2008 10:27 am

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From: therese521 (Original Message) Sent: 5/1/2004 7:27 PM
Hi! My name is Therese Mack. I'm 40 years old and have been very happily married to Joe, the love of my life for 10 years (on 5/21, hence the 521 address!). To express everything that's happened to me with this disease would take novels, not just a few pages on the net. But, I'll try to explain it as briefly as possible. About 9 years ago Joe noticed that my big toe on my right foot was swollen, throughout that week my right ankle got very painful. I went to my Doctor who referred me to a neurologist, who sent me to an oncologist. Then I started with kidney problems and was sent to a nephrologist. Since then I've been sent to approximately 15 different specialists from Rochester NY to Rochester MN to Boston for everything from: RP (an eye disease that will eventually make me go blind) to an endocrinologist (for many endocrine problems) to a gastroenterologist (for many unidentifiable stomach problems), just to name a few. I was originally diagnosed about 8 years ago, at Mayo Clinic in Minnesota with RSD. Unfortunately, my pain specialist here (in Schenectady, NY) said that wasn't it because I did not have those symptoms. Which I've recently learned was a big mistake since RSD has no "typical" symptoms. My worst problems are awful pain in my right ankle, which have recently spread to my knee, generalized pain everywhere which hurts to the point of tears, and being very depressed because I lost my job as a full-time Medical Transcriptionist. However, I'm now working with 4 year olds for 2 and 1/2 hours a day which I LOVE, but depresses me too because recently the pain has been so bad I'm wondering how much more I can do this. I've also been terribly upset the past few years over the fact that I had to give up my driver's license because I don't feel safe driving anymore. I have a big family which I love (5 brothers and sisters) and my Mom and Dad whom I love very much. However, unfortunately they've always had an "if you don't talk about it then it will go away" attitude. So with this disease and it's "hidden" symptoms, it's very hard for them to understand. However, I'm VERY lucky to have Joe. I don't know what I'd do without him. He's been more supportive than I could ever ask for and is always understanding and loves me to the point of wishing it was him going through it instead of me. As far as "treatments": I had to switch to a new GP last year because the one I had through it all just gave up on me, literally. Thank God my new one is wonderful. He's very understanding and since we all know that RSD is so "vague", he thinks the most important thing is just to make me feel better, which really makes me think that he's very caring, which is what I need right now. Although it is nice after 10 years to finally have a name for it, which they've gone back and forth with for all this time, I agree that the most important thing is just to make it so I can carry on as "normal" a life as possible. I've found (after many different attempts at others, including Oxycontin which took away the pain, but made me sleep so much that I had no life) that the Duragesic Patch (which is what I'm on now) is the best. It definitely does not take the pain away, but it lessens it enough that I can carry on a 14 hour day or so, with a couple of one or two hour naps in between. I really appreciate being able to talk to other people who have gone through this horrible thing. I don't know what I'd do without Joe, my religion (I'm Catholic and it makes a hugedifference to me), some good friends, a family who at least is trying hard to understand, and the good Doctors who have stayed with me through it all. One of the things I keep saying to Joe is that "I just wish I could talk to other people who have gone/are going through this. Robyn, this board is definitely the best I've see so far. I'm really sorry if I've rambled, I've just been waiting for so long to do this. I look so forward to talking to you and all of the other great people on your board. Thanks again and good luck to all of you! Oh, and do you have a "caregiver" support group that I could refer Joe to?



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From: byrd45 Sent: 5/1/2004 9:58 PM
Hi Therese,
Great to see you jumping right in. It is great to have you here and I know what you mean about righting novels lol. I had the same problem when I added my story. We go through so much with doctor visits and pain and hospital visits it is hard to condense it all. I am glad you shared your story and you sure have been through alot. RSD leaves its mark on all of us which is why I started this group. It's nice to know that you have other people to turn to who really understand. Coincidentally my family like to have the don't talk maybe it will go away gene too.We need to talk to somebody and I am thankful for my husband as well. It is great to know he is standing by you and not turning and hiding in the sand. I have friends who have stuck by me and others who distance themselves rather than deal with what is happening in my world. That's okay I figure they will either come around or not, but RSD can ruin alot of relationships if they aren't strong ones. You and your husband's relationship sounds really strong and if he is interested he is welcome to join us right here and become a member as well.My friend Jil and my husband are members and they don't have RSD.RSD affects everyone close to you as well as the person who has the disease. If he doesn't feel comfortable here than I would be glad to put my feelers out and see if I can find a good caregivers group for him. Talk it over and see what he feels comfortable with. I wish you both my best.
Robyn
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