cioc1212
06-29-2001, 08:46 PM
Hi all! Well, I'm going to tenatively say that the Chiari was causing a lot of my symptoms. I'm definitely starting to see an improvement as the post-op pain starts to wear down. My balance and coordination are better,I have less trouble reading out loud and finding words when I speak,my eyes don't hurt when I move them and miracle of all miracles.......
I'M GETTING RESTORATIVE SLEEP!!! http://www.healthboards.com/ubb/dance.gif
Even with waking up during the night because my head hurts!!! Yippee!
I'm trying not to get my hopes too high, it's only been two weeks but my mom has been here most of the time and she said that I look like myself again(is that a good thing? guess so). My friends have been telling me that I sound better over the phone. I feel better, not very good right now,but better.
Unfortunately, one of my top symptoms, the aching leg pain has definitely come back.
Arnold Chiari Malformation is definitely something for anyone with FM to have ruled out (a simple head MRI will do the trick). I really wouldn't wish this on my worst enemy though, it's not something you really want to go through. Very unpleasant. I'm now an official "zipperhead" and that was NOT on my list of "things I'm willing to do to feel better".
[This message has been edited by cioc1212 (edited 06-29-2001).]
I'M GETTING RESTORATIVE SLEEP!!! http://www.healthboards.com/ubb/dance.gif
Even with waking up during the night because my head hurts!!! Yippee!
I'm trying not to get my hopes too high, it's only been two weeks but my mom has been here most of the time and she said that I look like myself again(is that a good thing? guess so). My friends have been telling me that I sound better over the phone. I feel better, not very good right now,but better.
Unfortunately, one of my top symptoms, the aching leg pain has definitely come back.
Arnold Chiari Malformation is definitely something for anyone with FM to have ruled out (a simple head MRI will do the trick). I really wouldn't wish this on my worst enemy though, it's not something you really want to go through. Very unpleasant. I'm now an official "zipperhead" and that was NOT on my list of "things I'm willing to do to feel better".
[This message has been edited by cioc1212 (edited 06-29-2001).]
Sponsor
Caring
06-29-2001, 09:54 PM
Cioc,
Wow!!! This is so great for you!!! Sorry to hear your leg is still hurting, but great to hear you're finally getting some relief from your other symptoms.
I wish you a speedy recovery from your operation. Take Care and I will pray for you.
Sincerely,
Caring
Wow!!! This is so great for you!!! Sorry to hear your leg is still hurting, but great to hear you're finally getting some relief from your other symptoms.
I wish you a speedy recovery from your operation. Take Care and I will pray for you.
Sincerely,
Caring
korken
07-01-2001, 12:17 PM
Glad to hear you're doing better! :) I to am feeling better and Gary is the getting ready for his surgery next month. I can't wait till we're where you are now! Love, Kim and Gary :)
cioc1212
07-01-2001, 01:02 PM
Thank you Caring!
Kim, it's a tough road and my marriage has been struggling under the stress. I still am having moments of "why did I do this to myself?" but hopefully in the long run, it will be worthwhile. I'm still fighting not to get my hopes too high and not to see improvements when there aren't any, I'm being very cautious. Without a doubt, there have been improvements but I still can't say how much;when they said 4-6 weeks for the initial recovery, they weren't kidding. My head is still so tender that it hurts to lay on a pillow and is extremely sore to the touch. My neck is still pretty stiff, I can't even think about being able to drive. I have had the pain decrease to where I can cut down the pain meds though and I've gone off most of the other meds, it's nice not to be on all those drugs!
Kim, it's a tough road and my marriage has been struggling under the stress. I still am having moments of "why did I do this to myself?" but hopefully in the long run, it will be worthwhile. I'm still fighting not to get my hopes too high and not to see improvements when there aren't any, I'm being very cautious. Without a doubt, there have been improvements but I still can't say how much;when they said 4-6 weeks for the initial recovery, they weren't kidding. My head is still so tender that it hurts to lay on a pillow and is extremely sore to the touch. My neck is still pretty stiff, I can't even think about being able to drive. I have had the pain decrease to where I can cut down the pain meds though and I've gone off most of the other meds, it's nice not to be on all those drugs!
Copper
07-02-2001, 05:01 PM
Hi cioc, GREAT NEWS! I'm sooooo glad to hear things are improving! Man, i almost didn't even catch your post here, glad I did, I've been thinking about you alot (especially when I've been sneaking of for a puff or 2. Can't believe I'm doing this after so long of not caring about smokes! grrrrrr! :mad: )
Don't do too much :bouncing: around, and don't let the http://www.healthboards.com/ubb/dizzy.gif get you down! Remember to http://www.healthboards.com/ubb/yawn.gif lots. Are you still smoking? remember Vit C to counteract (some) of those effects.
In Fact a full range of anti-oxidant and Omega's (specifically Omega-6, evening primrose, borage and black currant oils.
Any time oils are increased in the diet be sure to increase intake of vitamins A, B3, B6, C, E and minerals zinc, selenium, and manganese for proper absorption.) supplements will help speed the healing and reduce inflammation. Also, garlic is used as a natural antibiotic.
Hey, maybe now that your "FM" is gone :D , perhaps the dr.s will take a SERIOUS look at what is causing your leg pain! nice thought, anyway.
just some thoughts. hope everything continues to improve! gentle hugs,
------------------
Copper
Let Miracles Replace all Grievances
Don't do too much :bouncing: around, and don't let the http://www.healthboards.com/ubb/dizzy.gif get you down! Remember to http://www.healthboards.com/ubb/yawn.gif lots. Are you still smoking? remember Vit C to counteract (some) of those effects.
In Fact a full range of anti-oxidant and Omega's (specifically Omega-6, evening primrose, borage and black currant oils.
Any time oils are increased in the diet be sure to increase intake of vitamins A, B3, B6, C, E and minerals zinc, selenium, and manganese for proper absorption.) supplements will help speed the healing and reduce inflammation. Also, garlic is used as a natural antibiotic.
Hey, maybe now that your "FM" is gone :D , perhaps the dr.s will take a SERIOUS look at what is causing your leg pain! nice thought, anyway.
just some thoughts. hope everything continues to improve! gentle hugs,
------------------
Copper
Let Miracles Replace all Grievances
cioc1212
07-02-2001, 05:36 PM
Copper, they're going to have to because I now know that the last 20 years of headaches had a REAL cause. The not sleeping had a REAL cause. The motor skill problems had a REAL cause. The general crushing fatigue had a REAL cause. Faicial pain is also diagnosed as severe TMJ with a skeletal abnormality behind THAT. So all along, my pain has been REAL and I will NEVER NEVER again doubt myself. EVER.
My best guess is that my leg pain has a REAL CAUSE behind it. What do you think??? LOL!
I'm still puffing, I only quit for 2 months and figured that since I was so sick and quitting didn't make me feel better that it was a useless exercise. Good thing I did, I'd have never made it through all this otherwise.
My best guess is that my leg pain has a REAL CAUSE behind it. What do you think??? LOL!
I'm still puffing, I only quit for 2 months and figured that since I was so sick and quitting didn't make me feel better that it was a useless exercise. Good thing I did, I'd have never made it through all this otherwise.
lj-111
07-02-2001, 10:29 PM
THAT HAS GOT TO BE THE BEST NEWS I'VE HEARD IN A LONG, LONG TIME...
You go girl!!!!! :) :) :)
Thank God for your success thus far. And what do you mean about your Moms? Heck yeah, mom knows all. If mom said it's all good, then I believe her!!
Please though, not zipper head you poor thing... Thats terrible... :( You are crafted perfectly and don't you forget it!!
I am so happy for you... Man I am so happy...
Lisa J.
Angels are singing a new song!! :)
You go girl!!!!! :) :) :)
Thank God for your success thus far. And what do you mean about your Moms? Heck yeah, mom knows all. If mom said it's all good, then I believe her!!
Please though, not zipper head you poor thing... Thats terrible... :( You are crafted perfectly and don't you forget it!!
I am so happy for you... Man I am so happy...
Lisa J.
Angels are singing a new song!! :)
cioc1212
07-03-2001, 12:55 AM
Hi Lisa,
It is pretty incredible,huh? I've finally let myself start thinking(if I'd done it before I would have shut myself in a closet and had a breakdown) and considering that I've been sick for most of my life,(even when I was feeling "well",I had daily headaches),it's really a shocker to think that this surgery might actually improve my health and I might not have daily pain for the first time in 20 years! I've been so brainwashed that my pain,fatigue and other health problems weren't real, that it STILL hasn't really hit me. Gosh,it explains why I was such a clumsy child, all kinds of things. I'm still fighting anger too, that I've been dismissed so many times by so many doctors. I will never again put my healthcare in the hands of ANY doctor, I will do the footwork myself. Even though there is some misinformation on the web, I truly in my heart believe that it saved my life, I couldn't have gone on much longer the way I was. So really, everyone here has a part in this, just being able to toss information and ideas around with other people has been invaluable to me. Kim's suggestion of the new doctor was perfect, he's wonderful and he helped me do in two weeks what didn't get done in 9 months with my old doctor.
Along with fighting the anger, I have this enormous feeling of gratitude. Everyone has been wonderful, both my "net" buddies and my friends and family in real life. We've had someone cook for us every night since surgery, my house has been cleaned and the laundry done. My kids are taken care of and I had another seller come out of the woodwork to manage my business for a week or so when I had surgery. For someone who's always done for everyone else, it's an amazing feeling to have people do for me and to be able to sit back,rest and heal. Even friends that were more on the acquaintance side have turned out to be TRUE friends, very kind and supportive. Our families have been great too, especially my mom who has put her life on hold for the past few weeks in order to take care of me. I owe her BIG time.
A final note, when they said it would be about a 6 week initial recovery post-op, they weren't kidding, I think it's going to be every bit of the 6 weeks. I'll keep posting and keep you guys updated. Thanks so much for all the thoughts and prayers, I really do believe that they helped me get through this, I didn't have much else left to sustain me.
It is pretty incredible,huh? I've finally let myself start thinking(if I'd done it before I would have shut myself in a closet and had a breakdown) and considering that I've been sick for most of my life,(even when I was feeling "well",I had daily headaches),it's really a shocker to think that this surgery might actually improve my health and I might not have daily pain for the first time in 20 years! I've been so brainwashed that my pain,fatigue and other health problems weren't real, that it STILL hasn't really hit me. Gosh,it explains why I was such a clumsy child, all kinds of things. I'm still fighting anger too, that I've been dismissed so many times by so many doctors. I will never again put my healthcare in the hands of ANY doctor, I will do the footwork myself. Even though there is some misinformation on the web, I truly in my heart believe that it saved my life, I couldn't have gone on much longer the way I was. So really, everyone here has a part in this, just being able to toss information and ideas around with other people has been invaluable to me. Kim's suggestion of the new doctor was perfect, he's wonderful and he helped me do in two weeks what didn't get done in 9 months with my old doctor.
Along with fighting the anger, I have this enormous feeling of gratitude. Everyone has been wonderful, both my "net" buddies and my friends and family in real life. We've had someone cook for us every night since surgery, my house has been cleaned and the laundry done. My kids are taken care of and I had another seller come out of the woodwork to manage my business for a week or so when I had surgery. For someone who's always done for everyone else, it's an amazing feeling to have people do for me and to be able to sit back,rest and heal. Even friends that were more on the acquaintance side have turned out to be TRUE friends, very kind and supportive. Our families have been great too, especially my mom who has put her life on hold for the past few weeks in order to take care of me. I owe her BIG time.
A final note, when they said it would be about a 6 week initial recovery post-op, they weren't kidding, I think it's going to be every bit of the 6 weeks. I'll keep posting and keep you guys updated. Thanks so much for all the thoughts and prayers, I really do believe that they helped me get through this, I didn't have much else left to sustain me.
lj-111
07-03-2001, 10:16 PM
CIOC1212.....
You are so welcome...
And while I have a second, let me also thank you.. Just watching you and imagining your battle through these posts and how you have made it to the other side "practically drug free" has inspired me more than you will ever know. As I said from the beginning, I call Fibromyaglia, the "We don't know exactly whats wrong with you yet" illness.. Well, at least in my case it is..I am just waiting and searching for my answers too. I have already found out that my neuropathy has been either caused or was exasperated by contaminated drinking water in our area of the city. The poison is "Trihalomethanes"... I have been taking in this water by the gallons on a daily basis. Yeah, good old water comapany's been trying to off me!! lol... So thats one symptom down and about 3 more to go...The other symptoms I can live with..
I am glad your getting help with chores and such.. It's rough when you feel good, but I can only imagine when you have been cut from here to shinola.. I have had surgeries in the past and I know they are NO FUN.. And yours, well, OUCH!! But your a toughy!! Go get em'!!! Keep up the good work... I am still praying for you and yours...
Lj
Ps... You are so right about Freefrom.. I tried to tell him some where on these posts to just chill and talk. Poor guy sounds like he just needs someone to talk to, huh? He'll probably just keep on trying to get a rise out of every one. I know a jillion people like him who don't realize just how miserable they sound to an intelligent person. It is so obvious, and sad... I am not an online junkie either. I just started coming here a month or so ago. I spend maybe 2 hours a week or less online. Even if I liked being online, I don't feel like it.. My emails stack up to 85-100 by the time I check em'. I originally came to these boards thinking it was something else. I had no idea it was a message board, nor did I know how to do a message board. Heck, I still don't know for that matter!! lol. I started reading a few post and was in shock. It compelled me to return one night when I was at the end of my ropes from pain. You know, you hate to take NARCs so you put off going to the doctor and even asking for something. They usually say no anyway. By the time I gave in to the pleadings of my husband (who, ironically enough, won't even take an aspirin if his life depended on it) my doctor was out of town. I went the next 7 days in agonizing pain that actually made me contemplate the horrible. I gave into my stubborness and HUGE ego, and posted here.. You and mamanell and a couple of other people talked me through that nightmare that night. (Million Thanx) Mamanell was especially concerned..lol.. She searched for me online until she found me and made me keep fighting even though I thought I was temporarily too weak minded to keep pushing.. I thank her for that and you and everyone.. Total strangers reaching out, that is so KOOL.. In light of the help I received, I considered it my duty and an honor to try and lend some support to others who may roam in here on their last breath as did I.. If FreefromFM wants to call it a lovefest, I say "HOORAY", then we are doing our job as honest and caring people, true?
I will most likely disappear for the most part from this site, little by little in the months to come, but let it never be said, that I haven't been soulfully moved while sharing laughs, tears and yes, even jeers.. I am in a fierce battle that I never saw coming, but I will win this fight, heart, soul, body and mind... So shall we all!!
Lisa Juarez 2001
You are so welcome...
And while I have a second, let me also thank you.. Just watching you and imagining your battle through these posts and how you have made it to the other side "practically drug free" has inspired me more than you will ever know. As I said from the beginning, I call Fibromyaglia, the "We don't know exactly whats wrong with you yet" illness.. Well, at least in my case it is..I am just waiting and searching for my answers too. I have already found out that my neuropathy has been either caused or was exasperated by contaminated drinking water in our area of the city. The poison is "Trihalomethanes"... I have been taking in this water by the gallons on a daily basis. Yeah, good old water comapany's been trying to off me!! lol... So thats one symptom down and about 3 more to go...The other symptoms I can live with..
I am glad your getting help with chores and such.. It's rough when you feel good, but I can only imagine when you have been cut from here to shinola.. I have had surgeries in the past and I know they are NO FUN.. And yours, well, OUCH!! But your a toughy!! Go get em'!!! Keep up the good work... I am still praying for you and yours...
Lj
Ps... You are so right about Freefrom.. I tried to tell him some where on these posts to just chill and talk. Poor guy sounds like he just needs someone to talk to, huh? He'll probably just keep on trying to get a rise out of every one. I know a jillion people like him who don't realize just how miserable they sound to an intelligent person. It is so obvious, and sad... I am not an online junkie either. I just started coming here a month or so ago. I spend maybe 2 hours a week or less online. Even if I liked being online, I don't feel like it.. My emails stack up to 85-100 by the time I check em'. I originally came to these boards thinking it was something else. I had no idea it was a message board, nor did I know how to do a message board. Heck, I still don't know for that matter!! lol. I started reading a few post and was in shock. It compelled me to return one night when I was at the end of my ropes from pain. You know, you hate to take NARCs so you put off going to the doctor and even asking for something. They usually say no anyway. By the time I gave in to the pleadings of my husband (who, ironically enough, won't even take an aspirin if his life depended on it) my doctor was out of town. I went the next 7 days in agonizing pain that actually made me contemplate the horrible. I gave into my stubborness and HUGE ego, and posted here.. You and mamanell and a couple of other people talked me through that nightmare that night. (Million Thanx) Mamanell was especially concerned..lol.. She searched for me online until she found me and made me keep fighting even though I thought I was temporarily too weak minded to keep pushing.. I thank her for that and you and everyone.. Total strangers reaching out, that is so KOOL.. In light of the help I received, I considered it my duty and an honor to try and lend some support to others who may roam in here on their last breath as did I.. If FreefromFM wants to call it a lovefest, I say "HOORAY", then we are doing our job as honest and caring people, true?
I will most likely disappear for the most part from this site, little by little in the months to come, but let it never be said, that I haven't been soulfully moved while sharing laughs, tears and yes, even jeers.. I am in a fierce battle that I never saw coming, but I will win this fight, heart, soul, body and mind... So shall we all!!
Lisa Juarez 2001
cioc1212
07-03-2001, 10:40 PM
Hi Lisa,
I haven't been reading too carefully lately, I've been trying to catch up on my real life things and get my business back up and running smoothly so I don't have a clear picture of where you're at with the FM but I did want to say a few things again.
I really believe very strongly that many of us have underlying conditions that are being overlooked. Anyone I've ever talked to on or off the boards who has gotten better or found relief has done so by clearing up whatever else was wrong with them. Please make sure you've gone back and read the earlier posts and make sure that YOU are doing your own research, not depending on your doctors to fix you. I am horrified by the medical "treatment" I've received over the last 20 years. I'm so brainwashed that I STILL can't really believe inside that I had a real medical problem, even after going through excruciating brain surgery. It still won't click. I'm praying for help with that issue but the point is that NO ONE was willing to help me, I got the big brush off everywhere I went, either the health care professionals were ignorant about my condition(s) or they just didn't care. The only reason I've made any progress is because I DID IT ALL MYSELF, with the information I pulled from the net, and a vast majority was initiated from this site, I don't post much to other health boards.
Please don't ever give up, you need to really push and push to make sure you're getting the best care. I've seen from postings and from talking to other women that many of us will keep seeing a doctor,over and over, even if they aren't helping us,don't care,belittle us or even hurt us in some way. We need to change our way of doing things and start really educating ourselves and fighting for what we need to be healthy. That includes getting copies of our records and asking for tests and results and making the doctors EXPLAIN them to us! Hang in there and keep us updated on how you're doing, just remember, even if it gets really bad again, there is ALWAYS a point where it will get better again!
Rach
I haven't been reading too carefully lately, I've been trying to catch up on my real life things and get my business back up and running smoothly so I don't have a clear picture of where you're at with the FM but I did want to say a few things again.
I really believe very strongly that many of us have underlying conditions that are being overlooked. Anyone I've ever talked to on or off the boards who has gotten better or found relief has done so by clearing up whatever else was wrong with them. Please make sure you've gone back and read the earlier posts and make sure that YOU are doing your own research, not depending on your doctors to fix you. I am horrified by the medical "treatment" I've received over the last 20 years. I'm so brainwashed that I STILL can't really believe inside that I had a real medical problem, even after going through excruciating brain surgery. It still won't click. I'm praying for help with that issue but the point is that NO ONE was willing to help me, I got the big brush off everywhere I went, either the health care professionals were ignorant about my condition(s) or they just didn't care. The only reason I've made any progress is because I DID IT ALL MYSELF, with the information I pulled from the net, and a vast majority was initiated from this site, I don't post much to other health boards.
Please don't ever give up, you need to really push and push to make sure you're getting the best care. I've seen from postings and from talking to other women that many of us will keep seeing a doctor,over and over, even if they aren't helping us,don't care,belittle us or even hurt us in some way. We need to change our way of doing things and start really educating ourselves and fighting for what we need to be healthy. That includes getting copies of our records and asking for tests and results and making the doctors EXPLAIN them to us! Hang in there and keep us updated on how you're doing, just remember, even if it gets really bad again, there is ALWAYS a point where it will get better again!
Rach
lj-111
07-04-2001, 12:00 AM
Well, I am researching. I don't rely on these doctors either. I am fortunate though, I have an M.D. that is way kool..He is also begging me to let him do this and that.. I just don't want to any more.. I am also spending money we don't have..We had to borrow $6000.00 from my husbands 401k the other day to pay off med bills and were talking after insurance covered 90%.. Thats cold blooded..
Ya see, my husband in the eight years we have been together, has never been to the doctor and won't even take an aspirin. If he was sick he wouldn't say any thing.. He is tough as nails.. It really gets old for him to see me go back and forth and never find answers or relief.. He thinks they should have found exactly what is wrong and fixed it by now. I have been sick for 4 years and have had so many x-rays and mri's etc, that I glow in the dark.. And David is very sympathetic with me, he loves me to death and would never put a price limit on my health, but damn...
What am I supposed to do Rach?
lj
Ya see, my husband in the eight years we have been together, has never been to the doctor and won't even take an aspirin. If he was sick he wouldn't say any thing.. He is tough as nails.. It really gets old for him to see me go back and forth and never find answers or relief.. He thinks they should have found exactly what is wrong and fixed it by now. I have been sick for 4 years and have had so many x-rays and mri's etc, that I glow in the dark.. And David is very sympathetic with me, he loves me to death and would never put a price limit on my health, but damn...
What am I supposed to do Rach?
lj
cioc1212
07-04-2001, 02:17 AM
Lisa, Dan thought I was a hypochondriac, right up to surgery. It's so hard for other people to understand what it's like to live with chronic pain and chronic fatigue,especially over years. I've never really been well but I reached a point where having headaches and feeling sick was normal for me, I didn't even count it anymore unless the pain was worse than "normal". That's sad and I think you start to just wear down and age after a while. I've been sick for 20+ years. I'm very dogged, I just never gave up on trying to find out what was wrong with me. I KNEW it was something, no one else ever believed me. Keep fighting,keep checking into new things and try your best to keep your marriage running smoothly. For me, it meant finding support among my girlfriends and online with other people in similar circumstances. Dan is a wonderful guy and very supportive but he couldn't understand the extra burdens that come with being a sick wife and mother. I needed other women to talk to.
Rach
Rach
DEBBIEELMCITY
07-06-2001, 08:37 AM
Hi,
Where did all of you have to go to get your surgery done. That is what my Orthapedic Doctor is recommending. He says there are only 2 in North Carolina that do it. I am on the waiting list to see a Dr. Michael Rosner in Asheville, NC. I understand he is tops in the field, he is originally from Chicago.
------------------
Debbie Williford
Where did all of you have to go to get your surgery done. That is what my Orthapedic Doctor is recommending. He says there are only 2 in North Carolina that do it. I am on the waiting list to see a Dr. Michael Rosner in Asheville, NC. I understand he is tops in the field, he is originally from Chicago.
------------------
Debbie Williford
DEBBIEELMCITY
07-06-2001, 08:39 AM
Hi,
Where did all of you have to go to get your surgery done. That is what my Orthapedic Doctor is recommending. He says there are only 2 in North Carolina that do it. I am on the waiting list to see a Dr. Michael Rosner in Asheville, NC. I understand he is tops in the field, he is originally from Chicago.
------------------
Debbie Williford
Where did all of you have to go to get your surgery done. That is what my Orthapedic Doctor is recommending. He says there are only 2 in North Carolina that do it. I am on the waiting list to see a Dr. Michael Rosner in Asheville, NC. I understand he is tops in the field, he is originally from Chicago.
------------------
Debbie Williford
cioc1212
07-06-2001, 11:41 AM
Debbie, I think I'm the only one on this board to have had the surgery (or a Chiari malformation for that matter). I went to Dr.Weingart at Johns Hopkins. Dr. Rosner is one of the top guys but he has a reputation for being knife happy, he's operated on people who have CFS/FMS but NOT a clear Chiari herniation and that is very controversial. This was a very difficult surgery with a long recovery, not something you want to do lightly.
Rachael
Rachael
lj-111
07-07-2001, 08:45 AM
Rach, I just got a chance to read your post..
Your right, a lot of people don't understand us FM sufferers. My husband on the other hand, is really excellent with me, he is just aggrivated with the medical profession. He wants me well, and he wants it YESTERDAY!! After all, I am quote, "His entire world"... Of course he is mad, but he's mad at FM and the lack of scienctific help, not at me!! He knows I am really sick and I am not "just crazy".. He has seen me beg God and whail out in pain... Beleive me, he knows..
Ya know, I hear a lot on these boards about people not getting support and how no one believes their illness.. I must say, (Thank You God) that I have been so fortunate. I am so sad for all who lack much needed support. Also, I support "myself" too. I stand in the gap for ME and I battle as best I can...
I am so happy to say, I have not had one single person treat me with any thing but the utmost respect and with complete and utter sympathy. In fact, people are steadily tripping over themselves to go completely out of their way to do any and every thing possible to help me through this mess. My people in my life would just as soon lay down and die before they would ever turn their back on me. Some of them call me their earthly-gaurdian angel, or prayer warrior, best friend, sister, confidant, buddy, ally and just some one who makes them laugh 24-7.. So, of course in my darkest hour they're gonna be there for me... Maybe a big part of that is that I am very careful of the type of people I surround myself with. Plus, I have a very loving family who thinks the world of me and I them...
There are people who don't understnd because for the most part, I look healthy, but none of those people matter to me as far as what they think. They are always strangers.
Even my doctors (All of them) have treated me very seriously and have always been sincerely concerned. I guess it is because I have always been so strong and well put together. I am the last one to go to the doctor and the first one to ignore pain. I guess when people and doctors know you, they also know when you finally give in and plead for help, they know it must really be serious.
So, I am very pleased with every one and their goodness and understanding.. As for the rest of the world, I could care less if they believe me or not...
Lisa
Your right, a lot of people don't understand us FM sufferers. My husband on the other hand, is really excellent with me, he is just aggrivated with the medical profession. He wants me well, and he wants it YESTERDAY!! After all, I am quote, "His entire world"... Of course he is mad, but he's mad at FM and the lack of scienctific help, not at me!! He knows I am really sick and I am not "just crazy".. He has seen me beg God and whail out in pain... Beleive me, he knows..
Ya know, I hear a lot on these boards about people not getting support and how no one believes their illness.. I must say, (Thank You God) that I have been so fortunate. I am so sad for all who lack much needed support. Also, I support "myself" too. I stand in the gap for ME and I battle as best I can...
I am so happy to say, I have not had one single person treat me with any thing but the utmost respect and with complete and utter sympathy. In fact, people are steadily tripping over themselves to go completely out of their way to do any and every thing possible to help me through this mess. My people in my life would just as soon lay down and die before they would ever turn their back on me. Some of them call me their earthly-gaurdian angel, or prayer warrior, best friend, sister, confidant, buddy, ally and just some one who makes them laugh 24-7.. So, of course in my darkest hour they're gonna be there for me... Maybe a big part of that is that I am very careful of the type of people I surround myself with. Plus, I have a very loving family who thinks the world of me and I them...
There are people who don't understnd because for the most part, I look healthy, but none of those people matter to me as far as what they think. They are always strangers.
Even my doctors (All of them) have treated me very seriously and have always been sincerely concerned. I guess it is because I have always been so strong and well put together. I am the last one to go to the doctor and the first one to ignore pain. I guess when people and doctors know you, they also know when you finally give in and plead for help, they know it must really be serious.
So, I am very pleased with every one and their goodness and understanding.. As for the rest of the world, I could care less if they believe me or not...
Lisa
Mamanell
07-08-2001, 10:59 PM
Hey Rach, I am so very very happy that you are doing so well (or at least seeing improvement). I have prayed for you and thought about you many times especially after reading how horrible the surgery was.
You keep taking care of YOU! Then you can go back to taking care of everybody else.
Hang in there, my friend. Just wanted to let you know I care and I'm pulling for you.
===
Lisa, what do you mean you will gradually be going away from the board. Don't you do it. We need you here and I for one will miss you greatly. Talk to me.
nwilliams@tripled.com or
mamanell@shelby.net
Hugs to all, keep that chin up and remember to be good to YOU!
Nell
You keep taking care of YOU! Then you can go back to taking care of everybody else.
Hang in there, my friend. Just wanted to let you know I care and I'm pulling for you.
===
Lisa, what do you mean you will gradually be going away from the board. Don't you do it. We need you here and I for one will miss you greatly. Talk to me.
nwilliams@tripled.com or
mamanell@shelby.net
Hugs to all, keep that chin up and remember to be good to YOU!
Nell
cioc1212
07-08-2001, 11:56 PM
Hi guys, I'm glad you're still here Nell--- and Lisa you need to count your blessings! NO ONE has really believed me EVER until now. I've always been the "hypochondriac" or whatever,I learned to just stop talking about it. I'm still throwing myself a big old pity party, this has pretty much been a nighmare but my husband sat me down tonight to review things and I have gotten relief from most of my symptoms. The awful leg pain is back and that is devastating but:
Headaches are almost gone, neck and shoulder pain is much better,IB is gone,balance & speech problems are gone,lower back pain is almost gone,gagging is gone,clumsiness & butterfingers are gone,eye muscle pain & ear pain are gone,I'm sleeping much better,off almost all meds except I'm still tapering down on the Ultram and still taking flexaril at bedtime. Even my fingernails have stopped splitting! What is still here is the achy legs,some of the stiffness,some headache but it may still be surgical pain,some fatigue still and some weakness still. And some very vivid dreams! I'm only 3-4 weeks post op though so I'm still expecting improvement. I walked about 3/4 mile tonight, over to my mom's(pushing little chubby in her stroller, actually she's a skinny little thing but I would never have guessed it on the way home! ;) ), rested for a while and then back. I've started back on my exercise bike too.
So all in all, the Chiari malformation and compression WERE causing a majority of my symptoms. It looks like my FM isn't gone but I really didn't expect it to be at this point. I feel very strongly that there's something else going on with me and I do intend to find out what it is and get it fixed. I'm still very angry, I haven't gotten the support that Lisa has and it's been way too many years of illness,pain and misery. I keep thinking about all the wasted years in doctors offices. The time trying different treatments(that were never going to work), everything from biofeedback, therapy,medications,right up to epidural pain injections.Painful or demeaning tests. And all the times I blamed myself for not being ok or had someone else blame me. I suppose I've earned a little time to be angry,frustrated and sad as long as I don't let it disrupt my life any further. Right? Right. I really am utterly wiped out and my husband gave me a big hug tonight,told me that I'm doing great and to go easier on myself. Easier said than done!
And thank God for the net and boards like this one. Every time I think about where I'd be without everything I learned here, I feel really sick. I don't think I would have ever gotten better.
Headaches are almost gone, neck and shoulder pain is much better,IB is gone,balance & speech problems are gone,lower back pain is almost gone,gagging is gone,clumsiness & butterfingers are gone,eye muscle pain & ear pain are gone,I'm sleeping much better,off almost all meds except I'm still tapering down on the Ultram and still taking flexaril at bedtime. Even my fingernails have stopped splitting! What is still here is the achy legs,some of the stiffness,some headache but it may still be surgical pain,some fatigue still and some weakness still. And some very vivid dreams! I'm only 3-4 weeks post op though so I'm still expecting improvement. I walked about 3/4 mile tonight, over to my mom's(pushing little chubby in her stroller, actually she's a skinny little thing but I would never have guessed it on the way home! ;) ), rested for a while and then back. I've started back on my exercise bike too.
So all in all, the Chiari malformation and compression WERE causing a majority of my symptoms. It looks like my FM isn't gone but I really didn't expect it to be at this point. I feel very strongly that there's something else going on with me and I do intend to find out what it is and get it fixed. I'm still very angry, I haven't gotten the support that Lisa has and it's been way too many years of illness,pain and misery. I keep thinking about all the wasted years in doctors offices. The time trying different treatments(that were never going to work), everything from biofeedback, therapy,medications,right up to epidural pain injections.Painful or demeaning tests. And all the times I blamed myself for not being ok or had someone else blame me. I suppose I've earned a little time to be angry,frustrated and sad as long as I don't let it disrupt my life any further. Right? Right. I really am utterly wiped out and my husband gave me a big hug tonight,told me that I'm doing great and to go easier on myself. Easier said than done!
And thank God for the net and boards like this one. Every time I think about where I'd be without everything I learned here, I feel really sick. I don't think I would have ever gotten better.
Valerie
07-09-2001, 09:44 AM
Hi Rach! That is such good news that you're getting symptom relief already. I just didn't know how long it might take, but it's sure good to hear that you're already feeling better. Sure sorry to hear about the leg pain, but maybe that will clear up in the next few weeks, too. I have my fingers crossed.
Thanks so much for sharing all this info with us. As you know, I'm keeping a close eye on how this is going for you. Great that you're well enough to walk already!!!
Love,
Val
Thanks so much for sharing all this info with us. As you know, I'm keeping a close eye on how this is going for you. Great that you're well enough to walk already!!!
Love,
Val
lj-111
07-12-2001, 12:43 AM
I was just reading posts here from rach & Nell..
I am feeling so horribly nauseated, feel like I'm gonna barf big time.. Can't read or write no more tonight. Very sick..
Will try to get back tomorrow or ASAP..
Love ya's
Lisa
I am feeling so horribly nauseated, feel like I'm gonna barf big time.. Can't read or write no more tonight. Very sick..
Will try to get back tomorrow or ASAP..
Love ya's
Lisa
lj-111
07-13-2001, 01:45 AM
Okay, I'm back tonight.. Feeling a lot better.
Rachel,
I know sweetie that you have lacked much needed support & it kills me to think that you suffered so long & basically so alone. I can't explain why I have had such support except to say, God is good to me, very good... It's not God that does these things to us...
On the other hand, don't get me wrong.. I have suffered tremendously all of my life from one thing or another. When I was little I was treated horribly when I complained of pain and being sick and throwing up all the time. I was accused of wanting to just stay home from school and later I was called lazy or just nuts... I ended up getting my tonsils out and I had terrible and life threating complications whn I was 12. 3 years later I ended up loosing an ovary and my appendix.. 2 years after that I lost both of my fellopian tubes. I suffered with terrible and painful bladder infections all my life until last year as well. And 4 years after the fellopian tube removal I cantracted Toxic Shock Syndrome (TSS) from a cut on my finger and had to have emergency surgery in my hand and if God wouldn't have healed me at the last minute, I would have lost my arm. I was on my death bed. People were told to fly in from all over the country if they wanted to see me one last time before I died. I was given 12 hours to live. Imagine that at 23 years old.
In each of these terrible things except TSS, I suffered for a long time and was laughed at, rediculed, called crazy and shut out from all respect. I spent a total of 15 years in misery and no one ever believed me except my mom, and then only after I ended up in surgeries. She believes every thing I say now of course, but before, I was all alone and even wanted to die when I was just 13 years old because I thought maybe I was crazy. I took a shot gun out to the woods and said I was going for a walk (it was dangerous in the woods in those days). I was going o kill myself at 13. if one more person called me crazy or stupid or lazy or a faker, I would do it.. Luckily, I decided to wait one more day & that night a cyst ruptured on my ovary & my appendix burst at the same time & I was rushed to surgery.. Every one realized I was really sick by then, but for 3 years, I was tormented by the cruelty of those same people....Especially the people that in the same breath told me they loved me from time o time, my family... The fact that they all finally believed me did not help.. I have had many bouts with death and horrid pain all of my life, but those were the times that hurt me the most. It made me hard and callosed & it took me until I was 28-years old to forgive every one and let it go.. I shutter thinking of all the years I have wasted on bitterness...
Believe me when I say, I know exactly how you feel... It is horrible, but you now have support as do I... Let us be grateful for today and find a way to release all yesterdays... For they are no more and your future is at hand... And no matter where you go or what you do, I will always be on your side. I will always believe you and I will always stand in the gap for you.. For the rest of your life, you can never say, "Nobody cares, nobody understands"...
I am your friend for life... God bless you Rach, & remember, God is not finished healing you yet.. It took him 6 days to create the world and he's God who can do any thing.. I think for many reasons he never rushes.. Don't give up yet.. You are more well than you think... I really believe that you will get even better as time passes...But regardless of what happens, YOU HAVE MY SUPPORT and the support of many right here... Always..
lj
[This message has been edited by lj-111 (edited 07-13-2001).]
[This message has been edited by lj-111 (edited 07-13-2001).]
Rachel,
I know sweetie that you have lacked much needed support & it kills me to think that you suffered so long & basically so alone. I can't explain why I have had such support except to say, God is good to me, very good... It's not God that does these things to us...
On the other hand, don't get me wrong.. I have suffered tremendously all of my life from one thing or another. When I was little I was treated horribly when I complained of pain and being sick and throwing up all the time. I was accused of wanting to just stay home from school and later I was called lazy or just nuts... I ended up getting my tonsils out and I had terrible and life threating complications whn I was 12. 3 years later I ended up loosing an ovary and my appendix.. 2 years after that I lost both of my fellopian tubes. I suffered with terrible and painful bladder infections all my life until last year as well. And 4 years after the fellopian tube removal I cantracted Toxic Shock Syndrome (TSS) from a cut on my finger and had to have emergency surgery in my hand and if God wouldn't have healed me at the last minute, I would have lost my arm. I was on my death bed. People were told to fly in from all over the country if they wanted to see me one last time before I died. I was given 12 hours to live. Imagine that at 23 years old.
In each of these terrible things except TSS, I suffered for a long time and was laughed at, rediculed, called crazy and shut out from all respect. I spent a total of 15 years in misery and no one ever believed me except my mom, and then only after I ended up in surgeries. She believes every thing I say now of course, but before, I was all alone and even wanted to die when I was just 13 years old because I thought maybe I was crazy. I took a shot gun out to the woods and said I was going for a walk (it was dangerous in the woods in those days). I was going o kill myself at 13. if one more person called me crazy or stupid or lazy or a faker, I would do it.. Luckily, I decided to wait one more day & that night a cyst ruptured on my ovary & my appendix burst at the same time & I was rushed to surgery.. Every one realized I was really sick by then, but for 3 years, I was tormented by the cruelty of those same people....Especially the people that in the same breath told me they loved me from time o time, my family... The fact that they all finally believed me did not help.. I have had many bouts with death and horrid pain all of my life, but those were the times that hurt me the most. It made me hard and callosed & it took me until I was 28-years old to forgive every one and let it go.. I shutter thinking of all the years I have wasted on bitterness...
Believe me when I say, I know exactly how you feel... It is horrible, but you now have support as do I... Let us be grateful for today and find a way to release all yesterdays... For they are no more and your future is at hand... And no matter where you go or what you do, I will always be on your side. I will always believe you and I will always stand in the gap for you.. For the rest of your life, you can never say, "Nobody cares, nobody understands"...
I am your friend for life... God bless you Rach, & remember, God is not finished healing you yet.. It took him 6 days to create the world and he's God who can do any thing.. I think for many reasons he never rushes.. Don't give up yet.. You are more well than you think... I really believe that you will get even better as time passes...But regardless of what happens, YOU HAVE MY SUPPORT and the support of many right here... Always..
lj
[This message has been edited by lj-111 (edited 07-13-2001).]
[This message has been edited by lj-111 (edited 07-13-2001).]
cioc1212
07-13-2001, 01:45 PM
Well guys, the leg pain is back and after spending two days feeling suicidal again, I saw the doctor this morning. Dan actually took off to go with me, my friends have told me to not go alone anymore, advice I think I'll take! He said that this isn't going to be an easy fix, possibly there are some epidural injections in my future but for right now it's back on the anti-depressants and Ultram. What's really sad is that almost ALL of my other symptoms are better or gone but it doesn't seem to matter when I'm in this much pain, I feel like I'm right back where I started, in pain,miserable and stuck at home. Oh yeah, and up and down all night, in and out of the tub trying to get the muscles to give. So I guess I still have FM................HA! The leg pain was as bad as the headaches and if I could get it to be better, I think I'd feel human again.
Rach
Rach
Valerie
07-13-2001, 03:00 PM
Oh sh*t, Rach. That's rotten news on your legs. We wanted you to be ALL better after this. Maybe it's just somekind of post-op thing, as Lisa, suggests, and will get better with time. Referred pain from the surgery or something.
Val
Val
cioc1212
07-13-2001, 03:08 PM
Originally posted by Valerie:
Oh sh*t, Rach. That's rotten news on your legs.
Val
Ha ha isn't that the truth. NOW I'm depressed! I don't think it's just going to go away, I've had it since last fall. I'm so angry that no one took me seriously all these years, I wouldn't be in this leaky boat if just one doctor had. I'm going to try to buy some time with the meds and then try the epidural injections. I just can't do it now, they hurt a LOT and I don't have it in me right now. I'm even avoiding the dentist, I had a filling fall out last month and haven't even picked up the phone. I've had it, I'm done. No more pain for me right now. Even a bee sting right now would put me over the edge. :(
Val, I've thought about the Gui too, but I'm really not ready to make any drastic changes to my diet right now. Do you think that the special diet has been as helpful to your daughter as the gui has?
Rach
[This message has been edited by cioc1212 (edited 07-13-2001).]
Oh sh*t, Rach. That's rotten news on your legs.
Val
Ha ha isn't that the truth. NOW I'm depressed! I don't think it's just going to go away, I've had it since last fall. I'm so angry that no one took me seriously all these years, I wouldn't be in this leaky boat if just one doctor had. I'm going to try to buy some time with the meds and then try the epidural injections. I just can't do it now, they hurt a LOT and I don't have it in me right now. I'm even avoiding the dentist, I had a filling fall out last month and haven't even picked up the phone. I've had it, I'm done. No more pain for me right now. Even a bee sting right now would put me over the edge. :(
Val, I've thought about the Gui too, but I'm really not ready to make any drastic changes to my diet right now. Do you think that the special diet has been as helpful to your daughter as the gui has?
Rach
[This message has been edited by cioc1212 (edited 07-13-2001).]
Valerie
07-15-2001, 12:10 AM
Hi Rach. I don't know how much of her improvement is the guai and how much is the diet. I think the slow, steady improvement is likely the guai. And my best guess is that the diet is responsible for keeping the headaches away, because she gets one when she cheats too much.
I agree that it's a bad idea to think about guai now. As you said, you just don't need any more pain at all at the moment and it will cause you more pain.
How is your sleep now?
Val
I agree that it's a bad idea to think about guai now. As you said, you just don't need any more pain at all at the moment and it will cause you more pain.
How is your sleep now?
Val
Copper
07-15-2001, 06:24 PM
YEOW! Rach! What a drag http://www.healthboards.com/ubb/bang.gif But, be patient if possible, you may yet see (feel) further inprovement. One thing i've noticed after particularly painful surgeries is that I feel almost WORSE at about 3-5 weeks post-op. Maybe the anti-d's are an excellent choice now to help you over the hurdle? Wish there was something we could do for you here, at this level. :(
loving hugs,
------------------
Copper
Let Miracles Replace all Grievances
loving hugs,
------------------
Copper
Let Miracles Replace all Grievances
cioc1212
07-15-2001, 11:04 PM
Hi guys,
My hubbie took me away for a weekend with no kids. We went down to the shore, stopping at a flea market and some yard sales. He spoiled me rotten the whole weekend and I even won $80 at the slots in Atlantic City. I'm in a much better frame of mind, I think I just needed to get out of the house and away from the kids for a little bit. The anti-depressants have kicked in also and between those and the Ultram, the pain is "muted". Aside from the leg thing, I'm starting to feel pretty good, like a human being again! http://www.healthboards.com/ubb/wow.gif I guess I just have to resign myself to it being a rather long road to recovery, I'm angry and frustrated, I want to be all better YESTERDAY! Since all this started, I've had time to think and it hasn't been 5 years that I've been ill, I was having chronic back pain 20 years ago and headaches ever since I can remember. The past two have just been the most incapacitating. I'm so incredibly sick of being sick(I know I'm repeating myself). Thanks guys for being here to talk to me, it helps so much. My husband has really come around too and lately he's been super helpful and nice to me. That makes a huge difference.
Hugs,
Rach
My hubbie took me away for a weekend with no kids. We went down to the shore, stopping at a flea market and some yard sales. He spoiled me rotten the whole weekend and I even won $80 at the slots in Atlantic City. I'm in a much better frame of mind, I think I just needed to get out of the house and away from the kids for a little bit. The anti-depressants have kicked in also and between those and the Ultram, the pain is "muted". Aside from the leg thing, I'm starting to feel pretty good, like a human being again! http://www.healthboards.com/ubb/wow.gif I guess I just have to resign myself to it being a rather long road to recovery, I'm angry and frustrated, I want to be all better YESTERDAY! Since all this started, I've had time to think and it hasn't been 5 years that I've been ill, I was having chronic back pain 20 years ago and headaches ever since I can remember. The past two have just been the most incapacitating. I'm so incredibly sick of being sick(I know I'm repeating myself). Thanks guys for being here to talk to me, it helps so much. My husband has really come around too and lately he's been super helpful and nice to me. That makes a huge difference.
Hugs,
Rach