RSD Outreach awareness

About Stage IV.......Susan's Story

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About Stage IV.......Susan's Story

Post  byrd45 on Wed Nov 05, 2008 2:45 pm

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From: suzy1230 (Original Message) Sent: 7/18/2006 5:26 PM
My name is Susan and I have had RSD since 1993. I kow this is not a pretty subject but I find myself once again in shoes I wish I never had to wear and no one physically in my life that has RSD as many of us do. I want to hear someone that is also trying to accept somehow more losses - abilities and finding myself terrified of the future, not at all rejoycing that someone else may understand but to know that the realization of progress of RSD is really happening despite the fight. I have accepted as much as I can so I can put it aside and go about living life as it was before but I'm feelin kinda weak in the knees so to speak and I feel like I know inside a war is coming and I want to know I'm not crazy and how to build myself up as much as possible. I have developed allergies to pain meds up to now post operative drugs, getting hurt is a huge fear because I'm nearing the end of pain meds that I can actually take. I try not to allow myself to think about this and I rest and exercise and do anything I can to gain health, I pray and I have faith in God, I've learned to be stronger than I thought I was but I need to face this issue so I can make decisions and prepare myself as much as possible. My Dr. has diagnosed me with myostis, its an immune system related issue that causes swelling of tissue, muscle and just pain all over, stiffness, fatigue... I have a lot of questions about this place I'm at and I hope that someone else would share with me, maybe that would bring comfort to others too. I strongly believe in dont give up or in for just as long as you can, hold on and pray I'm very thankful I have a foot and can get up and can still walk, anything that I can still move is still victory! Thanks for this site and the work I can only imagine it takes and for being able to have a place to express this journey. Susan



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From: memphiscatwoman2 Sent: 7/19/2006 12:36 AM
Susan,
While I may not be able to address a lot of your concerns, I felt like I had to respond. We share a name, and a lot of the same experiences. I, too, have been struggling with all-over joint & muscle pain, so much so that it is very painful to get up off the couch or even snap my fingers. I hadn't mentioned it to my doc, but it sounds like I need to. I've only had RSD since 9/05, but my doc said that I was into stage 3 by 6 weeks. I haven't dared ask since then. I have been avoiding thinking about the losses -my pain & stupidity from RSD is so bad that I can't work anymore, have run through all my retiremt savings, can hobble for about 40 feet, longer distances I need crutches or a wheelchair. I'm in the process of losing my house, and have already lost one car, then the other one died yesterday & would need a new engine to be revived. I'm luckier in that I can tolerate all of the hard-core drugs, but they only get me down to a level 6-7 pain on a good day. I'm a CPA who can't even remember her own home phone number, and I can't figure out what decisions I need to make or even remember what I was trying to think about long enough to do anything about it, so I'm at the mercy of nasty creditors & dumb state disability people and other people that don't have my best interest at heart while my life as I knew it swirls down the toilet. If your brain is still capable of making decisions, DO IT NOW, and write down your plan. Then write down where you put it, and tell a reliable person as a backup. My own mom still doesn't understand that RSD is not just about the pain, it's what it does to your brain and the other systems in the affected limb.
Is it your foot that is the problem? If so, does it swell & get dramatically more painful by the minute & turn more & more purple the longer it's down? I have to keep mine elevated above my heart most of the time or I can'ttolerate the pain. I haven't heard anyone else say that they had to keep theirs up. You're not crazy, and you're a very strong woman to go about living life as it was before. I used to think I was strong, but this monster has just turned me into a shell of a person. It exhausts me to type or even talk on the phone. This site has been a godsend. I'm probably not making much sense, but I'm praying for you, as well as the rest of the RSD friends.

Wishing you better days,
Susan


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From: suzy1230 Sent: 7/19/2006 12:56 PM
Susan, I was really glad to get a response, I know how tiring even that can be. I had to keep my foot elevated also and even now almost 2 yrs. later. I have learned to be very protective of my foot especially the heel, the skin there is so thin and fragile, every day there is some swelling so I have to rest and go ... rest and go... but at least I can now go! Many weeks - months every day go to the bathroom-rest go get something to drink-rest I'm sure its probably that way for you too, I remember the pain of feeling like my foot would explode, every time I put it down even for 30 seconds it would already be turning purple - a very beautiful shade - I would tell everyone and my foot could do something theirs couldnt, I was desperate for humor! It wasnt funny. I couldnt stand for water or air or even to rest my foot on anything it is still very sensitive but a lot better, I can be up for about 30 min. its swelling already but I rest when I have to at that point. Something that helped me that you might ask your Dr. about is a cast shaped up to the knee compression machine I guess you would say, the one I have is vinyl and has hoses that when plugged in push air through and put a controlled amt of pressure to help stimulate blood flow, I couldnt stand the thing even to touch my foot so I would wrap it with something very soft and use it that way several times a day, as for that, it really helped me a lot! Another thing I had to do was to desensitize the area even up to my knee with maybe a silk gown rubbing over my foot-leg, touching it gently, sprinkle water on it softly, towels are good to help when you can stand it, I want to address the other things you said because I kow what you are saying, my children are grown but I can pick up or hold my 4 grands, it hurts a lot, I live alone for nowbut wonder how long, I have come to believe that this RSD alows me to have time to experience how God is my rock, my healer, my comfort.... I try to concentrate on that its hard sometime I get mad and cry too we are just human, family support is wonderful, Im glad you have that, I'm sorry about your loses and I hope you can get relief of some of those problems, I have lost those things also and its hard - just another reminder - I tried to laugh about it - telling myself now it was one less worry about - and try to let it go - and then sometime I would just cry. I'll pray for you and your family, thank you for letting me have someone to talk to. It is a bessing to me, Susan


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From: memphiscatwoman2 Sent: 7/20/2006 2:02 AM
Susan,

Thanks so much for telling me about your symptoms - they are EXACTLY like mine. The discoloration now goes all the way up my leg like this mottled flourescent red/purple/regular red swollen appendage. You're right about the humor - I was doing well with that until everything hit at once. and I'm not well enough to go hit the heavy bag or kick box or hit the covers off tennis balls. At least I did tell one of my friends that the demise of the Saab was a real blow because that was where I was planning to live next. It'll all work out, one way or another, and you are so right about God and I so identify with your feelings. It sounds like you have the most in common with my struggle. Would you mind if I asked you questions & stayed in touch with you? I'll see what doc says about the cast thing. Talking to you is a blessing to me as well. I hope this note isn't too random....
Susan


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From: suzy1230 Sent: 7/20/2006 9:49 AM
Susan, I would be thrilled to keep in contact, isolation is a loney place. Thank you for typing back I know how hard it is at times. I wanted to better explain what I was trying to say yesterday, the "cast" thing, and I cant think of what it is exactly, but it is like a cast shaped bag tha you rest your foot/leg in and you use it for as long as you can tolerate it, usually 5-20 min. at a time as you build up to it, it is removable and thats the good part! I will try to find one online for you I'm afraid i'm not explaining it too well, I had to use one in the hospital when I had back surgery to keep the blood flowing your doc should know what I'm talking about anyway! I dont mind answering anything I can I have had some pretty strange things happen but I just tell my doc I'm just keepin him on his toes! A friend told me "breathe in breathe out" it works!!! Some days ya just not sure but do it anyway! I cant think a lot of the time but I try to remember that. I hope you are having a good day today and things go smoothly for you. Oh, while I'm typing here I'm trying to figure out about car ins. payment, I am still able to drive a little but cars are expensive to keep up not having one is inconvient if not impossible but on the other hand .... I went to have my oil changed and it cost 160.00, dont ya know it needed something else! Try to think of it that way, I use to have 4 acres of land and a trailor and pool but I had to resolve myself to an apt. in town, at least I dont have to cut all that grass! Somtimes I have to grab for straws and hold on to that, you are right things will work out. I hope I'm not sounding inapproriate I just have to move quickley from things that hurt to try to be positive.....I hope this hasnt been to random for you as well!!!


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From: suzy1230 Sent: 7/20/2006 10:30 AM
Susan, I found this for you, maybe it better explains it, its a pneumatic air compression device, I would look a little longer but I have to rest. Just call me Suzy its easier!!! Catch you later...


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From: Lilkitkat45 Sent: 7/20/2006 10:55 AM
Susan,I'm on my way out the door to a DR. appt.but can totally relate to everything you're going throough.I was diagnosed w/RSD 7yrs.ago and it's been a trip I don't wish on my worst enemy,however you have to really live for one day at a time as not to drive your sanity completely over th edge.I'm new to this site and am happy to be here,they're aren't many people who understand what we got through including some unsympathetic Doctors I have run across who thought I was nothing but a drug addict trying to score some drugs.Anyway,hang in there,I'll post when I get back from my appt. Kathi


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From: suzy1230 Sent: 7/22/2006 12:52 PM
Hello Kathi, I hope your Dr. visit went well, It is nice to have someone to talk to. I have also had the same exp. with a lot of Drs. I am allergic to everything but post surgical drugs and imagine how it is requiring that kind of drug. They really think I'm an addict. But fortunally my Dr. is really good about letting other Drs. know its not that way. I hope you got some good help at the Dr. and have a good weekend!
Suzy


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From: suzy1230 Sent: 7/22/2006 12:57 PM
I hope your having a good weekend, I'm going to the pool to walk, if you dont have an open wound trying to desenatize in water is a lot less painful and walking is much easier too. I hope to relax muscle spasms today. Have a good day!
Suzy


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From: Lilkitkat45 Sent: 7/24/2006 11:07 AM
Hi Suzy,My Dr visit was just my regular monthly drug pick-up LOL.What do you mean when you say post-surgery meds?I'm on Fentanyl 200/every 72 hrs.I'm also on other pain meds for breakthrough pain and lets not forget the anti-depressants and sleeping pills.Right now the combo is doing very well for me,most of the time I can't think straight and my memory is totally gone but the pain is managable so I guess we can't have it all right?I just thank God everyday that I can get up on my own two feet and that I found the wonderful Dr.I've been seeing for several years now.Next month I'm going for my quarterly epidural injections,another Godsend for me.I used to be the only one in my Drs. waiting room,but I think I told everyone in the state how great he is so now I have to take a good book with me when I go.I don't mind,if he's helping people the way he does me,he deserves the business and they deserve to feel as good as I have been lately.Don't get me wrong,I still have some bad days when I only get up to use the bathroom and get a drink but overall compared to a couple of years ago,I'm doing great.Nice chatting with you.I hope everyone has a great pain day and God Bless


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From: suzy1230 Sent: 7/25/2006 11:37 AM
Hello everyone! I'm having a rough few days fighting fitigue, all i've been able to do is get to the bathroom and get something to drink. I'm having bad headaches so right now i'mgonna have to just speak and head back to bedI hope later I will feel like chatting moreI miss the conversationI wish you all a great day...Suzy


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From: byrd45 Sent: 8/4/2006 11:52 AM
Hi Suzy,
I can definitely relate to what you were saying. RSD does make you feel like you are literally in combat. We are the drafted soldiers that couldn't flee across the border and it's the enemy. I fight it every day and will never let it win. We can't afford to can we. You are doing just fine though mentally preparing yourself I go through the same thing over and over again. I have periods of doubt and strength. It really does vary depending on what is going on but one thing remains. I always try my very best to keep my humour. Laughing is what keeps me sane and helps me move forward to tomorrow. Your Friend has the right idea "breathe in breathe out it works" I love that lol! What a great outlook! Living with RSD is a horrible road to travel, but at least when we travel it together it seems somehow to be a little less scary.
Love,
Robyn



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From: suzy1230 Sent: 8/6/2006 10:08 PM
Robyn,
It helps a lot just to know that the crazy things that happen that are so bad, we hope they are really not true and that it must be a bad dream, but if it must be true after all it is so good to have someone to share the journey. Love, Susan


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From: suzy1230 Sent: 8/9/2006 6:02 PM
Hope your feeling better! Susan


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From: byrd45 Sent: 8/13/2006 11:59 AM
Hi Susan,
Thanks I sure am the treatment helped a whole lot!
Love,
Robyn
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