Re: Lori

[Guest guest]

Sorry folks,I gotta send this threw the crew.

Hey Lori,I been wondering whats up.Every card announcement I send to you comes back to me.This just started about 4 announcements ago,I haven't changed a thing on my end.Any idea why?You sign nearly every card,Don't want to lose your support.

Jimmy

Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections.

HAPPY BIRTHDAY Happy Birthday ine!!Hope you have a great day!!May God bless you. many blessings,________________________________________________________HAPPY BIRTHDAY, ine!!!! Mark _________________________________________HBD ine!! Hugs, _________________________________________Happy Birthday, ine! hugs, Jennette ________________________________________Happy Birthday, ine! Hope you have a super day! :-)___________________________________________________________________HI PAULINE, WISHING YOUR THE HAPPIEST BIRTHDAY. HOPE YOU HAVE A WONDERFUL DAY WITH FRIENDS AND FAMILY AND RECEIVE ALL THE THINGS YOU WISH FOR. HUGS AND BLESSINGS CATHERINE____________________________________________________________Dear ine,Is it that time of the year again already? Well anyway, I hope you have a wonderful birthday with lots of cake and chocolate, people being nice to you, you know the drill. And have a happy and healthy year as well.Georgia_________________________________________ine >> HAPPY BIRTHDAY CREWBIE! HOPE YOU HAVE A GOOD YEAR. HUGS, LYNNBK______________________________________________Big Hugs on your Birthday ine, i hope you have a wonderfull day and an even better year......... ________________________________________Happy birthday ine enjoy it,don't do any thing I would do:)Love to you my friend,Jimmy_________________________________________Happy Birthday ine. Hope you have a GREAT DAY!

[Guest guest]

Hi Jimmy!! Ive looked everywhere but i cant find any difference:( I even looked in blocked sender to be sure but youve never been blocked:( My ISP is doing a new mail scan so maybe thats it?? I get your mail to crew and social, but i didnt get the "Patriotic" one:) Have a feeling i didnt miss much:) phooey, ill keep looking~~Lowi

HAPPY BIRTHDAY Happy Birthday ine!!Hope you have a great day!!May God bless you. many blessings,________________________________________________________HAPPY BIRTHDAY, ine!!!! Mark _________________________________________HBD ine!! Hugs, _________________________________________Happy Birthday, ine! hugs, Jennette ________________________________________Happy Birthday, ine! Hope you have a super day! :-)___________________________________________________________________HI PAULINE, WISHING YOUR THE HAPPIEST BIRTHDAY. HOPE YOU HAVE A WONDERFUL DAY WITH FRIENDS AND FAMILY AND RECEIVE ALL THE THINGS YOU WISH FOR. HUGS AND BLESSINGS CATHERINE____________________________________________________________Dear ine,Is it that time of the year again already? Well anyway, I hope you have a wonderful birthday with lots of cake and chocolate, people being nice to you, you know the drill. And have a happy and healthy year as well.Georgia_________________________________________ine >> HAPPY BIRTHDAY CREWBIE! HOPE YOU HAVE A GOOD YEAR. HUGS, LYNNBK______________________________________________Big Hugs on your Birthday ine, i hope you have a wonderfull day and an even better year......... ________________________________________Happy birthday ine enjoy it,don't do any thing I would do:)Love to you my friend,Jimmy_________________________________________Happy Birthday ine. Hope you have a GREAT DAY!

[Guest guest]

Mark,

I should yell at you for staying on the computer too long but....since it is such good news I'll let it slide, as long as you promise to start taking it easy..hehe. First of all, I am so happy to hear about the pain levels already being so much lower, that is such great news!! Don't be too stubborn about taking the pain meds right now though, for I'm sure you know it is easier to maintain than it is to chase pain, so try not to let it get so bad that you have to wait for the meds to take effect. I pray that you have continued success and can stop taking the pain meds soon. I hope that the surgery pain subsides soon too, I am truly just so happy for you. Keep us posted on everything!! Second, that is great about your family coming to stay with you for a while, just do the cartwheels in your imagination, ok?? lol But 700 miles is so far to go get them, I worry about you doing that and think you should look into alternatives, but I won't push, I'm sure you know your own limits. I do hope they come, you don't know how much I wish my mom would come every month or so to help me out but I'm not going to hold my breath. It will be such a great help to you and also nice to have some company! Let me know if they do come or not.

My weekend hasn't been much better, finally catching up on some e-mails now but arms and hands are killing me. Also when I woke up my left foot hurt so bad and my right leg...basically everything is just ugh. I haven't done anything, just been laying here watching tv. A friend wanted to come visit yesterday but I just wasn't up to it, I think this weekend is going to be a complete wash but it happens. I have some appointments this week, hopefully someone will be able to help me. But you have cheered me up just knowing you are doing so well. Rest up now and I'll talk to you soon.

<hugs> Lori

[Guest guest]

in the beginning i could not put anything on my foot or leg then winter

set in. so i had to put sock on and pants. it was ot easy but now since

i have desesatized the body it is much easier and i do not look funny

with one sock and pant leg on an the other with nothing. there are

days that i can not stand to put a shirt on but it wouldn't be a pretty

sight with out shirt. so i weear one and say it will get better in time.

have a good day. cathy

[Guest guest]

Lori

I have ? When you say full body RSD is the extremities or else where.

I had carpul tunnel surgery on r hand terrible time afterwards with the pain.

Went on forever. They want to do the L wrist but I don't think so. Pain was

unbearable after months. I wear a splint on my R wrist. partially due to the

severity of fracture from accident and also to help control pain. I also have an

area on Lower Left side of abdomen where the seat betlt went across. Man that's

like a hot poker some times. I can't even stand up. I just figured it was from

seat belt injury and that it damaged some nerves in that area. Never brought it

up to my doctor. Couldn't go in to see him when its severe cause I can't move.

Some of my symptoms elsewhere are making some sense now I think. The more I know

the more the pieces fit. I'm getting fairly good pain control now. Like I say it

ain't great but it's better.

LOL. hope for a few pain free moments

Laurie

[Guest guest]

Lori,

I will make appt. next week. Bring up pain in abd. and other issue.

Thanks.

Laurie

[Guest guest]

Laurie I certainly am way behind in emails and have to believe you have been

urged to get to your doctor ASAP about your pain in lower Abdomen. It is

very important Laurie as could be severe problems needing taken care of. So

if pain is so bad and you cannot get out of house you call 911 and go to

hospital, really please do this. , Kathy, have any of you talked

about this as have not seen all emails but know you would know if I am in

error here in being so concered for Laurie. Laurie if you have already

taken care of this please forgive my begging you so much if all done now but

at this time of writing just going by your note and nothing else. So know

wrote this with great concern for you my new friend and not to panic you

just to make you aware that this can be serious, okay?! Don't want you

upset with me. PLease take care Laurie and look forward to knowing you

better. Hugs

s Momma

JoAnn

Re: Lori

>

> Lori

> I have ? When you say full body RSD is the extremities or else where.

> I had carpul tunnel surgery on r hand terrible time afterwards with the

pain. Went on forever. They want to do the L wrist but I don't think so.

Pain was unbearable after months. I wear a splint on my R wrist. partially

due to the severity of fracture from accident and also to help control pain.

I also have an area on Lower Left side of abdomen where the seat betlt went

across. Man that's like a hot poker some times. I can't even stand up. I

just figured it was from seat belt injury and that it damaged some nerves in

that area. Never brought it up to my doctor. Couldn't go in to see him when

its severe cause I can't move. Some of my symptoms elsewhere are making some

sense now I think. The more I know the more the pieces fit. I'm getting

fairly good pain control now. Like I say it ain't great but it's better.

> LOL. hope for a few pain free moments

> Laurie

>

>

>

>

[Guest guest]

Lori,

I'm on prozac for depression which works fairly well till I get tolerant to it

then I have to switch for awhile. Laid down and took nap yesterday. Seemed to

help with irratabiltiy some. I do agree it's hard to be up all the time. I know

I get more depressed when pain is out of control. It's that helpless feeling. I

like to be in as much control of my self as possible. Do see psych. dr monthly.

or more offten. I have ?. Did your RSD take awhile to spread that you bcame

bedridden? I don't even want to think that may happen to me. It would be such an

adjustment. But I have been know to go with the flow. Change is hard for me

sometimes. Hope you have some pain free moments today.

Thanks

Laurie

[Guest guest]

Laurie,

My RSD started in my right knee after major surgery and it hasn't been that long. I had surgery in April of 2003, and had to stay in bed for 3 months after that. Well the pain never went away and was getting worse, I had all kinds of problems after the surgery, so I kept going back to my surgeon and he wouldn't do anything to help me. By August I started developing outward signs of the RSD so I never really recovered well from the surgery and have been pretty much stuck to my bed since then. I can get up and do things, drive though it is very painful, I go to my office one or two days a week, but everything causes me extreme pain. Even to sit normal in a chair hurts. The only way I can be somewhat comfortable is if I'm in bed with pillows under my legs, etc. Before they figured out it was RSD I had another surgery in December, it was exploratory to try and find out what was going on, so again was laid up in bed and again the pain was worse after surgery. Then I had a block done at the end of December which caused severe pain in my back, they couldn't get it under control for weeks, so again was laid up in bed but couldn't even get comfortable in bed due to the back pain. Apparently this back pain is what caused the RSD to spread to my upper body. It started in my arms and now is from shoulder to fingertips and back, plus leg and feet. So it is hard to say really, like if I had not had the exploratory surgery would it have spread as fast, or if I hadn't done the block would it have spread as fast - I don't know. Now upper body hurts so bad even laying in bed, I try to limit my typing which is hard to do and work, but can't really post after work as in too much pain, and have lost ability to do many of my hobbies that require my hands. I don't know if this helps answer your question, with me it was one thing after another that caused me to pretty much stick to my bed, and it only took since say August until now to spread to full body Stage 3, but I think it has to do with what was done to me without protecting the RSD and maybe a bad doc doing the block.

<hugs> Lori

[Guest guest]

Laurie,

I am hanging in for a Saturday, trying not to type too much but also trying to get caught up on e-mails. I keep saying I'm going to rest but then come back for more...lol. I just hate being behind on how everyone is feeling, makes me feel like I can't be of any use to anyone, it that makes sense. My arms and hands are really bad today, I've got to do some work but it is almost 2:00 and haven't even started yet..whoops! I might rest today and do it tomorrow though I hate working on Sundays.

Anyway, as to your question about regretting doing the surgery I have to say no though I regret getting RSD. However, it just proves to me how unpredictable life is and you go along thinking nothing like this will ever happen to you and then out of the blue you end up like this. What upsets me the most is that I was so close to living with a minimal amount of pain, if I think about it too much I get really upset. As I said I've had about 20 knee surgeries, some regular, some arthroscopic, over the last 16 years of my life. So if anyone would have told me I was going to get RSD from knee surgery I probably would have laughed in their face, since I've been having surgery for half of my life and nothing like this had ever happened. I had reconstructive surgery on my left knee in 2002 - everything went well and even today I have very little pain in that knee. Had the Exact Same Surgery by the Same Surgeon in the right knee, only difference was he branched out on his own instead of being at the Cleveland Clinic, and from Day 1 after the surgery last year the right knee has not felt right. I had alot of other problems with it leading up to the RSD. If I had not gotten the RSD by now my right knee would have been healed like my left knee and I would probably be pretty happy resuming normal activities and living a fairly pain-free life for a while. I know someday I am facing knee replacements but they were trying to buy me 10-15 years as I'm really young for replacements. So it is that feeling of being so so close to the end and getting thrown this curve ball. It makes you wonder about that cliche of everything happens for a reason - I cannot see the silver lining in this yet. But I'm getting depressed so enough of that..lol. I hope you are enjoying the weekend and I'll talk to you soon.<hugs> Lori

[Guest guest]

Lori,

Seems that way to me. After the surgeries things just got worse. and the doc's

couldn't explain all the pain. I had carpel tunnel done this spring on my right

hand and still wearing a splint. They want to do the left hand but I will not go

through that again. I think the pain from the RSD is worse than the carpel

tunnel syndrome. I can put a splint on Left hand when it becomes to

uncomfortable. The pain from the last surgery is forever engraved in my mind.

And the docs did nothing to cover the pain. I know from the surgery in my feet

is what started my RSD off. I wish I could take it back sometimes. RSD has

spread up to my thighs. and I believe to abdomen and Right wrist and scalp. It'a

not completely full body but it's getting there.

Have you ever regretted having the surgery? I know it doesn't do any good to

wish that I had done something different. Just have to make the best of each

moment.

Soft hugs,

Laurie

[Guest guest]

Lori,

I was sent through a type of pain management program you are referring to. They

do not believe in narcotics. There idea is through antidepressants, antiseizure

meds and other's used for chronic pain. Physical and occupational therapy. They

have a philosphy that you can manage your pain without narcotics. Psycotherapy

etc. It only helped some. I learned relaxation techniques some biofeedback that

really didn't help. And I went through the whole gamit of non narcotic pain meds

that really did no good. I was given the ten's unit which has helped in certain

areas'. What I learned from the program was I could live with my pain by being

active and psychologicall well being.

So for me the program was a bust. And when my pain mangmt. doc. wanted me to go

back I just started to cry. I believe the program helps some individuals but for

me no.

Hope this helps.

Soft hugs Laurie

[Guest guest]

Laurie,

Thank you for sharing your experience. I am so angry today, I really hate this nurse at my neurologist's office. I called him and the RSD Specialist to discuss my concerns. I am on Oxycontin along with Methadone and Percocet, and have been for quite some time. I do not see how they can just stop the Oxy or even wean me off of it safely within 4 weeks. The RSD Specialist could not say "Don't go" but he did say I was correct in being concerned about my safety, and his office called to set up an appointment on Monday. I was surprised he did it so quickly, actually was very pleased he even called me back within a few hours.

My neurologist on the other hand is a complete idiot, or his nurse is. She calls and says that it is no problem, they take you off the narcotics to get a better idea of how much pain you are in. She said when you get out of the program they put you back on the narcotics. I kept telling her I didn't feel it was safe but she kept saying it was fine, so I hung up. The more I thought about it the more angry I became, so I called back and asked her if she even talked to the doctor for I can't see how she could advise me to just stop taking the Oxycontin. I said if you are giving advice without asking the doctor than you need to stop. She calls back and leaves me a message in her nasty tone that the doctor knows it is dangerous to just stop Oxy and if they wanted to wean me off that was fine but it had to be done Very Slowly. So I called back Again and repeated what she had told me. I said Correct me if I'm wrong but you told me they take you off to see how much pain you are in and after the program you go back on. I said that she made no indication about being weaned slowly off the Oxy. And since she said I had to be weaned Very Slowly how could it possibly be done within 4 weeks. Of course after this message she has not called me back. Ugh, I get so angry at her I can't stand it. I just don't see going through all of this torture when the nurse said she didn't know how much they would be able to help me, and I am not quitting anything cold turkey. Anyway, I'm very glad the RSD Specialist saw my point, and when I go on Monday I am going to discuss the response I got from my Neurologist and see if he will take over my meds so I don't have to deal with this idiot anymore, I can't handle it. Sorry for the novel but I needed to vent, I am still so upset about it all. Thank you again, I hope you had a better day today and I'll talk to you soon.

<hugs> Lori

[Guest guest]

Lori,

Just a warning there is no such thing as taking you off narcs to see how bad

your pain is. and that you will go back on them when your through with program.

That nurse should have her liscense taken. I get very leary of people esp. ones

involved with pain managment programs. Been there done that. I have found that

they have slippery tongues. Hope your evening is a little better.

Saw gen dr. today discussed some issues related to RSD. Didn't do the block.

Wanted to have my pain mgmt. doc do it. I told him how uncomfortable I'am with

that man. He stated it will be okay. I found the word I have been trying to say

about the pain mgmet.dr very condensending. How's that?

I do hope you look very carefully at this program, but keep an open mind. Know

that I'm here for you.

Laurie

[Guest guest]

Lori,

I have found that I am much happier when I have a Dr. I can communicate with

directly.

In fact, I can now email all of my Drs. when I need to, and they welcome it.

Is this a possibility?

If not, call your neuro and insist upon speaking with him directly. If that

doesn't work, send a fax to his office, directed to HIM. If the nurse doesn't

give it to him, I'm sure she'll get in a great deal of trouble when you finally

do speak to the Dr.

Don't do something with meds you are not comfortable with.

Hugs,

Jo

[Guest guest]

Jo,

For some reason this neurologist will not come to the phone. He has this big thing with phones - he doesn't even let his office staff answer the phones. Everything is done with voice mail. This is why sometimes I phone for days and nobody calls me back. I can't stand it, it is one of my biggest complaints about him. The only time I got to speak directly to him was one weekend when I called the service, he actually called me back. But the RSD Specialist was great. I left a message asking to have him call me, and within 2 hours he called me directly - not his office or nurse. He agreed about the meds so I need to see him to figure out the next route. He said he would be in my area on Monday and to make an appointment. His office actually called me before I had the chance to call them, and set up an appointment for Monday. Now That is what I expect from my doctors - call me crazy..lol. I am hoping he will take over my meds and I do not have to deal with the neurologist anymore. I've been trying to get rid of him for months but can't find anyone who is willing to prescribe such high doses of narcs. So keep your fingers crossed for me on Monday. Thank you for your concern, there is no way I'm just going off my meds or being weened so quickly. The levels that I'm on there is no way to get me off of them in 4 weeks - they are out of their minds. Thanks again, I hope that you are doing well and I'll talk to you soon. Have to take a break for a while.

<hugs> Lori

[Guest guest]

lol, ok ok I take it back = )

[Guest guest]

Lori,

The foot surgeon appt. are so far out they can't make one yet. So I's got to

live with it or hope it stops soon, I don't think that one is going to happen. I

have been trying my tens on it. Puting it in different places on my foot, and

toe. But my toe is so little to get and electrode to stay put. So I tape it up.

You should see it LOL

Yeah monday I see the condensending doctor for the occipital block. I relayed my

fear to the reg. doc. he said it will be ok. I just don't want to hear a lecture

from the con. dr. about narcs. usage. He's the one that wanted me to go back to

the pain management program. Oh well I will be assertive with him I hope. Lori I

know how hard it is to get different drs. esp. At Mayo they said I would have to

wait another 3 to 6 months to see different one. You'd think the mighty mayo

with all it's doc. could be more helpfull to the patients need. They put the

threat to you stating you won't be seen for a long time, and you have been

waiting along time as it is.

Gotta go work on some sewing for $$ and run errand for $$ . I can think of the

most enterprising ways to make $$ extra.

Lori Please drive carefully. You are in my thoughts.

Laurie

[Guest guest]

Laurie,

I hear you about having to wait forever, it is so crazy. I'm so thankful the specialist made room to see me so quickly, and pray he will take over my meds and that he will be able to come up with the next option, if any. I agree what you said about the Mayo clinic, you would think, especially with their reputation, that they would see patients sooner and not have that kind of attitude. I actually went there probably at least 10 years ago, my mom took me for an opinion on my knees, and all I remember was it was the biggest waste of time, they were totally unhelpful. We flew all the way out there from Virginia and spent like 5 hours there and they were not willing to help me. I was so pissed. I've been to a couple of big places like that, I forget if it was NIH or s Hopkins - I think it was s Hopkins - and had no luck there either. My mom now presses me to go again to one of those but I really need to stay in Florida for my job and health insurance, and can't afford to be flying around everywhere. I feel so bad that you have to just love with your foot right now, but I hope the block works well for you, and that the doc does not give you a hard time. Please take care of yourself and don't worry, I"m very careful. I used to be a very aggressive, speedy kind of driver but not anymore. But thank you for your concern and I'll talk to you soon.

<hugs> Lori

[Guest guest]

lol that is true, I wasn't too far off!! Thanks = )

Lori

[Guest guest]

No apology necessary......all my life people have insisted on calling me Tracey or . And, most people I know still insist on spelling my name Trisha. I just go with the flow...... And hey, at least you got the right name

TriciaAlwayzLoRi@... wrote:

I wanted to apologize = Tricia I spelled your name wrong in one of my e-mails, sorry! I'm just so forgetful.

Lori

[Guest guest]

Lori,

The procedure that you're describing sounds like a bier block. They start an IV in your foot, and then place a blood pressure-like cuff at the top of your thigh. Then they turn that on, to cut off the blood flow and keep it on while the medicine goes in, so that it'll stay longer in the affected limb. In the grand scheme of things, the procedure itself is pretty much a walk in the park compared to some of the others.....I've seen a lot of younger patients at the clinic who've had success with them. For me, they worked for a little while, but gradually less and less. Then again, as my doc likes to say, I'm his problem patient.....uncooperative system Hope you had good luck at the specialist.

TriciaAlwayzLoRi@... wrote:

Tricia,

I'm not sure about the type of block you mean, hopefully by now others may have some idea. I do know my doctor mentioned some type of IV drip where they like tie off your leg and it just drips into your leg, but he didn't seem to want to try it on me. I'm going to the specialist today at 10:15 so if he comes up with any ideas I will let you know, and I will try to ask him if he knows anything about the block you mentioned. I hope that you had a nice weekend, I didn't come online at all yesterday to try and rest my hands but it didn't help. Had a terrible night and am so tired today, and it's raining on top of everything...ugh. Hopefully your Monday is starting better than mine, I'll talk to you some time this evening to let you know if I find anything out that might help you.

<hugs> Lori

[Guest guest]

Lori - I'm glad that Tim's note was helpful to you. I think that you've got the right idea about surrounding yourself with folks that are supportive. I try to remember that different people are in my life for different reasons and that no one person can be my "everything" and meet all of my needs. Similarly, I can't meet all of anyone else's needs. It doesn't necessarily mean, however, that someone has no value if they are unable to provide emotional support. They just serve a different role in our life. Heck, if we only needed one person in our life the world would get pretty boring since the rest of humankind would be superfluous. Barbara (who nonetheless is sorry that you've been so hurt by your mother's actions)

Lori wrote:

Tim wrote a wonderful e-mail about accepting people as they are and how some people just can't give any more than they are giving, and we have to accept that it is all they are capable of giving. His e-mail helped me alot in dealing with my mother, who is not being supportive at >all. I know how much it hurts, she also said I would be a burden to her if I had to move back home - yes it hurts really bad. So I'm trying to just concentrate on myself and talk to the people who Are being supportive ......but I can't have somebody bring me

>down, even if it is my own mother

[Guest guest]

Tricia,

I'm responding, very late I'm afraid, to your e-mail about the Bier block. One pain doctor had mentioned that but this is different. Since the RSD is all through my body he wants to run an IV so that it goes all through my body. I wish it was still just my knee, but it has spread alot and very rapidly. But thank you for the advice. I have a couple months to wait so I'll keep you posted. I have 700 e-mails to go through so don't expect another response from me for a while...lol.

<hugs> Lori

[Guest guest]

Lori,

Hang in there woman. The world needs good people like you.

Laurie