Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Hi, I'm a new group member, but by reading some of the articles i can relate with alot of them. It's hard for people to understand how hard it is dealing with R.A. I've had it since i was 8, well it's been well over 20 years. It's a lot worse now but i still try to do as much as possible, my motivation is to never give up and just keep moving. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 MY STORY IS NOT MUCH DIFFERENT THAN YOURS RIGHT NOW EXCEPT I DO NOT HAVE FAMILY SUPPORT,IF U READ WHAT IVE WRITTEN U WILL KNOW WHERE IM AT TOO, MY HEART GOES OUT TO U,I DONT HAVE THE INCOME TO TREAT THINGS THE WAY THEY SHOULD BE TREATED BUT IM AM TRYING MY BEST,I HAD A SPINAL FUSION AT L-5 AND L-5 BACK IN SEPT OF 06 AND ITS CAUSED ALOT OF ADVERSE REACTIONS,ESPECIALLY BECAUSE ITS AGGRAVATING ANOTHER SPINAL FUSION AND NERVES AT T-LEVEL FROM WHEN I WAS JUST 13 YEARS OLDYOU R IN MY PRAYERS AND KNOW THAT U R NOT ALONE .LOVE TO U.BE AT PEACELAURIEpackardplace <packardplace@...> wrote: I AM A NEW MEMBER......MY NAME IS CATHY I WAS TOLD THAT I HAVE AN AUTO-IMMUNE CONDITION CALLED CIDP If the immune system fights the peripheral nerves by mistake, the individual nerve fibres become inflammed and stop working properly. Because the nerves to the feet and hands are the longest, the first symptoms of GBS and CIDP are usually felt first in the limbs. These symptoms are weakness (motor nerves) and pins and needles (sensory nerves). As the illness progresses and more damage is done to the nerves, the symptoms appear to move up the limbs. Sometimes weakness becomes paralysis and the pins and needles can become very painful. If this all happens in a short period, the illness is acute and called GBS. If it happens over a long period, the illness is chronic and called CIDP. IT HAS MADE MY LIFE VERY DIFFICULT SINCE THE ONSET IN SEPTEMBER OF 2006.......MY LIFE IS GOING THROUGH A LOT OF LOSES AND I AM VERY MUCH AFRAID OF BEING ON MY OWN. I have been working on my recovery but it has been going very slow.....I have not made much improvement since I left MASS MY HOMESTATE in November......Both my parents and I had thought when I was in Mass that I would be able to return by Spring. We most recently spoke with the best doctor who knows a lot about CIDP and it looks as though my recovery is going to be more like years. That was hard to accept but I have been reminded that I am special, courageous and I will be able to get through this! I also finished PUTTING ALL OF MY FRIENDS SUPPORTIVE WORDS ON my Gait belt and I have all of your support with me during my Rehab. Speaking of Rehab....I got the insurance company to pay for my Rehab that I have had since the beginning of the year....plus to save money I am switching to a wellness program at Rehab. I will work with a trainer instead of a therapist......instead of paying $200 an hour I will only have to pay $40 an hour. I just got my 401K released to me to pay for medical costs. So I can pay for some of the medical equipment that I need. Plus I found a local clinic to go to for a primary and I am on a waiting list for a Jewish family services therapy clinic. I went to a specialist for the sleep apnea problem and found out that I do have it and the steroids is causing it to be worse and that the insurance will not pay for the testing and visit. So I paid for the visit almost $300 and decided not to go through with the sleep lab and testing because it would be over $3000 and I spent $800 on the c-pap and if things get worse with my breathing then we will deal with it and go to the hospital. Well I don't go back to my neurologist until the middle of next month....we will talk about the next treatment for me. It looks as though I will be taking some other medication along with the steroids. Mostly I have to continue doing my exercises so that I don't get weaker. The hard part is walking with my walker without falling to the floor because then I can't get up on my own. I need to keep a phone with me at all times. I am feeling very challenged about this recovery. I really have never liked to exercise , rest or take pills and these are the three most important things I have to do daily to have a successful recovery. I wanted to share with you some of my daily challenges going to the bathroom without accidents washing and showering walking and bending over without falling fixing and eat meals and drinks without making a spill or getting hurt or burnt write or type without writing large or making mistakes helping out with chores is something I wish I could do but i can't going out of the house without support taking medication without help opening and putting meds in a cup I was so excited to get this laptop because I really thought I would be able to stay in touch with my kids daily or more often . I was wrong they are so busy all the time and I try to send them messages but they are more involved with school stuff and their friends. So I asked them to try and call me once a week....but they never remember....so I try and call them but again they are either to busy when I call or sleeping. When I do get a chance to check in them they seem to all be doing well in school. Plus they are ok with staying together with their father. Jake MY OLDEST is doing well with his first year at college at STCC. A YEAR YOUNGER just got his drivers license and is starting his third year of Lacrosse, he his playing goalie. Katy is finishing her second year of Jr high and is 13 now. She spends a lot of time with the girls on her cheer leading team. Unfortunately I have not been able to see my kids since November......I can't do any flying right now and the kids are not allowed to come to see me in Florida BECAUSE THERE DAD WON'T LET THEM. So we will just have to wait until I recover OR I GET VISITAIONS THROUGH THE COURT SYSTEM. I finally got together with My brother Tom and his family to celebrate Xmas. We tried to get together with my brother Mike and his family for the holidays. But my sister-in-law was in the hospital over Xmas and New Years. Finally we were both well enough to get together. We had a great Italian seafood feast and wonderful breakfast brunch. We did some late Xmas shopping....I got my HAPPY perfume that I usually get myself with the support of my lovely ladies I work with and Curtis Blake Day School. I cried when they arrived and when they left but that was because it was so nice to be able to spend time together. Mostly I am so lucky and blessed to have two parents that are willing to help take really good care of me. They are always trying to plan fun things for us to do. They take me to the farmer's markets in town and to the grocery stores were I get to use electric carts...LOL. I went with my Dad to a Spring Training Baseball game with the Cardinals and the Blue Jays this week. I had never been to a game it was a lot of fun! They want to plan a trip to Busch Gardens with another CIDP friend that I meet on-line who lives in the area. Plus they would like to take me on a week long cruise when I am up to it. So I have to say that my Parents are my saving miracle to help me through my recovery. I applied for me and my daughter to have Emergency Handicap Housing through The East Longmeadow Housing Authority IN MY HOMETOWN and they accepted my application. Now I am on a waiting list the wait could be up to three years I have been told. I want to hear a lot sooner from them . I would also like to be back to work but it is really hard at this point to tell how long of a day I could handle or how helpful I could be. I applied for a summer job at my favorite vacation place in Maine, Ferry Beach.....but it is really hard to say how I will be in June when the job starts or if they may be willing to deal with me and my disability. I choose it to try and work first because I know it is a safe place and has handicap accessibility. I wonder how things will be for me or if I will ever be able to drive again. I have been on-line with CIDP support groups and talked with others with CIDP about how they have dealt with it. It is very helpful to find out what treatments have worked and how long their recovery was. It is interesting because everyone is so different and different treatments work for different people. Some can do just about everything again but others need to stay in wheelchairs forever. Even though it is a rare condition I am finding people who do have it around me, my mother's friends' husband, a roommate in Sarasota Memorial Hospital and a women at Rehab. I just goes to show you what a small world it is. Well Bowling Tournament and Mass Women's Bowling Annual Meeting time is upon us and I will not be able to participate this year or get my award for my First Place in person but I hope that someday I can go to a bowling alley to see just what I can do! I do believe in miracles because My Favorite roll-model let me know that her team got second place in her division. I am so proud of them! Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disease of the peripheral nerves, i.e. nerves outside the brain and spinal cord. Demyelination is the degeneration of the fatty insulation covering the nerves (the myelin sheath). Polyneuropathy refers to the fact that several nerves are affected. CIDP affects nerve fibres controlling muscle movement (motor function), sensory information and sometimes autonomic functions (over which one has no voluntary control), such as heartbeat and digestion. The disease is symmetrical, meaning that it occurs on both sides of the body. It may be slowly progressive or follow a pattern of relapses and remissions. There is also an acute form, known as Guillain-Barré syndrome (acute inflammatory demyelinating polyneuropathy, AIDP). Although symptoms are similar, Guillain-Barré syndrome can be distinguished from CIDP by its rapid progression. Patients with the syndrome tend to recover within 6-12 months, while CIDP is a chronic disorder. How is CIDP Treated? Several treatment options are available. Drug treatment suppresses the autoimmune reaction and decreases inflammation. The treatment is carried out in two steps. The first approach has often been found helpful. High dose of intravenous immune globulins (IVIG), {I was given this when I first went into the hospital and told I had CIDP. I have had four other treatments since then.} protective blood proteins obtained from healthy volunteers, This makes it very expensive. can be readily given through an arm vein. Or another treatment, called plasma exchange (PE), or plasmapheresis, {This is the next treatment thay want to have me try.} some of the patient's blood is removed and the blood cells returned without the liquid plasma portion of the patient's blood. It may work by removing harmful antibodies contained in the plasma. For patients unresponsive to steroids and immunoglobuline therapy, blood plasma exchange (plasmapheres) may be a viable option. The planning and implementation of plasmapheres is complex, as the procedure requires access to a dialysis unit. The effects only last between 3 and 6 weeks and treatment should therefore be repeated regularly. Plasmapheres is not universally recommended owing to the risk of cardiovascular side effects, especially in elderly patients. The second treatment course aims to promote long-term stabilisation of the condition (adjuvant therapy). Prednisone, similar to protective anti-inflammatory corticosteroids that are normally made by the body, may be used as the second step of the treatment for several reasons. It often improves strength, can be conveniently taken by mouth and is inexpensive. Side effects can limit its use. Some side effects such as inhibited growth, decreased bone density (osteoporosis), muscle weakness, psychological problems, developing diabetes, gastric ulcers, high blood pressure, gaining weight and moon face are just a few. {I have been on this medication since November. It has made me stronger. Of course it has caused many different side effeccts. I was told it is important not to stay on it to long and to lower the dose as you go off it. } Treatment of CIDP is somewhat of an art. If steroid therapy, immunoglobulin treatment fail, a number of immunosuppressive drugs can be tried { This is the other NEW treatment they are going to also try on me. I have been told that it takes five months before it has any effect.} (for example chemotherapy or drugs for transplantation patients). The advantage of long-term chemotherapy is a reduced risk of recurring episodes or permanent disability. Drugs including cyclophosphamide, cyclosporine A, and mycophenalate work well as supplementary treatments to stabilise the condition. However, as experience of these medications is still limited they are used restrictively in order to minimise the risk of serious adverse effects. { I will need to be watched closely and get blood work done regularly to find out if my body is absorbing the medications correctly.} If a patient shows good improvement with an initial treatment but again evolves weakness it may be repeated or another therapy may be tried. I AM SORRY I HAVE SUCH A LONG POST...BUT IT MAKES ME FEEL BETTER EACH TIME I TELL MY STORY.....I REALLY AM IN NEED OF SOME HEALING PRAYERS LATELY.....PLUS I HAVE SOME VERY DIFFICULT LIFE CHOICES TO MAKE. THANK YOU FOR YOUR SUPPORT! To worry, is like wishing for something you don't want ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 . I just wanted you to know how bad I feel for you. Most of the time I sit and feel sorry for my self, last year i was laid off from a job i had for 11 yrs and for the last 3 years I have been struggling with severe migrains..depression..avn in the right knee.. degenerative disk in the lower back and fibromyolgia then when my baby sister who is only 34 was in the hospital after having major surgery 14 hrs she had total blocked arteries of the heart when she was in recovery in Icu and I come home from the hospital after being up without sleep for 2 days my husband tells me he wants a divorce and leaves the next day this was in november the divorce is still not finalized because he is not wanting to give me a penny and it is looking like all i am going to get is enought to pay for insurance for 1 1/2 yrs even though he was the one that was having an affair with a woman from his church. I am in so much pain that I can no longer drive a car or stand or walk so I know that I can't work so I am going to go stay with my daughter for a little while but I don't want to mess up her marriage and then do stay with a friend but I have no idea how i will pay for anything but after reading your story it made me realize I am not alone there are alot of people going through hard times. So cathy any time you want to email me please do I would be more than happy to have you as my friend.- -- In , LAURIE WEXLER <wexlaur@...> wrote: > > MY STORY IS NOT MUCH DIFFERENT THAN YOURS RIGHT NOW EXCEPT I DO NOT HAVE FAMILY SUPPORT,IF U READ WHAT IVE WRITTEN U WILL KNOW WHERE IM AT TOO, MY HEART GOES OUT TO U,I DONT HAVE THE INCOME TO TREAT THINGS THE WAY THEY SHOULD BE TREATED BUT IM AM TRYING MY BEST,I HAD A SPINAL FUSION AT L-5 AND L-5 BACK IN SEPT OF 06 AND ITS CAUSED ALOT OF ADVERSE REACTIONS,ESPECIALLY BECAUSE ITS AGGRAVATING ANOTHER SPINAL FUSION AND NERVES AT T-LEVEL FROM WHEN I WAS JUST 13 YEARS OLD > YOU R IN MY PRAYERS AND KNOW THAT U R NOT ALONE . > LOVE TO U. > BE AT PEACE > LAURIE > > packardplace <packardplace@...> wrote: > > I AM A NEW MEMBER......MY NAME IS CATHY > > I WAS TOLD THAT I HAVE AN AUTO-IMMUNE CONDITION CALLED CIDP > > If the immune system fights the peripheral nerves by mistake, the > individual nerve fibres become inflammed and stop working properly. > Because the nerves to the feet and hands are the longest, the first > symptoms of GBS and CIDP are usually felt first in the limbs. These > symptoms are weakness (motor nerves) and pins and needles (sensory > nerves). > > As the illness progresses and more damage is done to the nerves, the > symptoms appear to move up the limbs. Sometimes weakness becomes > paralysis and the pins and needles can become very painful. > > If this all happens in a short period, the illness is acute and > called GBS. If it happens over a long period, the illness is chronic > and called CIDP. > > IT HAS MADE MY LIFE VERY DIFFICULT SINCE THE ONSET IN SEPTEMBER OF > 2006.......MY LIFE IS GOING THROUGH A LOT OF LOSES AND I AM VERY MUCH > AFRAID OF BEING ON MY OWN. > > I have been working on my recovery but it has been going very > slow.....I have not made much improvement since I left MASS MY > HOMESTATE in November......Both my parents and I had thought when I > was in Mass that I would be able to return by Spring. We most > recently spoke with the best doctor who knows a lot about CIDP and it > looks as though my recovery is going to be more like years. That was > hard to accept but I have been reminded that I am special, courageous > and I will be able to get through this! I also finished PUTTING ALL > OF MY FRIENDS SUPPORTIVE WORDS ON my Gait belt and I have all of your > support with me during my Rehab. Speaking of Rehab....I got the > insurance company to pay for my Rehab that I have had since the > beginning of the year....plus to save money I am switching to a > wellness program at Rehab. I will work with a trainer instead of a > therapist......instead of paying $200 an hour I will only have to pay > $40 an hour. I just got my 401K released to me to pay for medical > costs. So I can pay for some of the medical equipment that I need. > Plus I found a local clinic to go to for a primary and I am on a > waiting list for a Jewish family services therapy clinic. I went to a > specialist for the sleep apnea problem and found out that I do have > it and the steroids is causing it to be worse and that the insurance > will not pay for the testing and visit. So I paid for the visit > almost $300 and decided not to go through with the sleep lab and > testing because it would be over $3000 and I spent $800 on the c- pap > and if things get worse with my breathing then we will deal with it > and go to the hospital. Well I don't go back to my neurologist until > the middle of next month....we will talk about the next treatment for > me. It looks as though I will be taking some other medication along > with the steroids. Mostly I have to continue doing my exercises so > that I don't get weaker. The hard part is walking with my walker > without falling to the floor because then I can't get up on my own. I > need to keep a phone with me at all times. I am feeling very > challenged about this recovery. I really have never liked to > exercise , rest or take pills and these are the three most important > things I have to do daily to have a successful recovery. > > I wanted to share with you some of my daily challenges > > going to the bathroom without accidents > washing and showering > walking and bending over without falling > fixing and eat meals and drinks without making a spill or getting > hurt or burnt > write or type without writing large or making mistakes > helping out with chores is something I wish I could do but i can't > going out of the house without support > taking medication without help opening and putting meds in a cup > > I was so excited to get this laptop because I really thought I would > be able to stay in touch with my kids daily or more often . I was > wrong they are so busy all the time and I try to send them messages > but they are more involved with school stuff and their friends. So I > asked them to try and call me once a week....but they never > remember....so I try and call them but again they are either to busy > when I call or sleeping. When I do get a chance to check in them they > seem to all be doing well in school. Plus they are ok with staying > together with their father. Jake MY OLDEST is doing well with his > first year at college at STCC. A YEAR YOUNGER just got his > drivers license and is starting his third year of Lacrosse, he his > playing goalie. Katy is finishing her second year of Jr high and is > 13 now. She spends a lot of time with the girls on her cheer leading > team. Unfortunately I have not been able to see my kids since > November......I can't do any flying right now and the kids are not > allowed to come to see me in Florida BECAUSE THERE DAD WON'T LET > THEM. So we will just have to wait until I recover OR I GET > VISITAIONS THROUGH THE COURT SYSTEM. > > I finally got together with My brother Tom and his family to > celebrate Xmas. We tried to get together with my brother Mike and his > family for the holidays. But my sister-in-law was in the hospital > over Xmas and New Years. Finally we were both well enough to get > together. We had a great Italian seafood feast and wonderful > breakfast brunch. We did some late Xmas shopping....I got my HAPPY > perfume that I usually get myself with the support of my lovely > ladies I work with and Curtis Blake Day School. I cried when they > arrived and when they left but that was because it was so nice to be > able to spend time together. > > Mostly I am so lucky and blessed to have two parents that are willing > to help take really good care of me. They are always trying to plan > fun things for us to do. They take me to the farmer's markets in town > and to the grocery stores were I get to use electric carts...LOL. I > went with my Dad to a Spring Training Baseball game with the > Cardinals and the Blue Jays this week. I had never been to a game it > was a lot of fun! They want to plan a trip to Busch Gardens with > another CIDP friend that I meet on-line who lives in the area. Plus > they would like to take me on a week long cruise when I am up to it. > So I have to say that my Parents are my saving miracle to help me > through my recovery. > > I applied for me and my daughter to have Emergency Handicap Housing > through The East Longmeadow Housing Authority IN MY HOMETOWN and they > accepted my application. Now I am on a waiting list the wait could be > up to three years I have been told. I want to hear a lot sooner from > them . I would also like to be back to work but it is really hard at > this point to tell how long of a day I could handle or how helpful I > could be. I applied for a summer job at my favorite vacation place in > Maine, Ferry Beach.....but it is really hard to say how I will be in > June when the job starts or if they may be willing to deal with me > and my disability. I choose it to try and work first because I know > it is a safe place and has handicap accessibility. I wonder how > things will be for me or if I will ever be able to drive again. > > I have been on-line with CIDP support groups and talked with others > with CIDP about how they have dealt with it. It is very helpful to > find out what treatments have worked and how long their recovery was. > It is interesting because everyone is so different and different > treatments work for different people. Some can do just about > everything again but others need to stay in wheelchairs forever. Even > though it is a rare condition I am finding people who do have it > around me, my mother's friends' husband, a roommate in Sarasota > Memorial Hospital and a women at Rehab. I just goes to show you what > a small world it is. > > Well Bowling Tournament and Mass Women's Bowling Annual Meeting time > is upon us and I will not be able to participate this year or get my > award for my First Place in person but I hope that someday I can go > to a bowling alley to see just what I can do! I do believe in > miracles because My Favorite roll-model let me know that her team got > second place in her division. I am so proud of them! > > Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disease > of the peripheral nerves, i.e. nerves outside the brain and spinal > cord. Demyelination is the degeneration of the fatty insulation > covering the nerves (the myelin sheath). Polyneuropathy refers to the > fact that several nerves are affected. > > CIDP affects nerve fibres controlling muscle movement (motor > function), sensory information and sometimes autonomic functions > (over which one has no voluntary control), such as heartbeat and > digestion. The disease is symmetrical, meaning that it occurs on both > sides of the body. It may be slowly progressive or follow a pattern > of relapses and remissions. There is also an acute form, known as > Guillain-Barré syndrome (acute inflammatory demyelinating > polyneuropathy, AIDP). Although symptoms are similar, Guillain- Barré > syndrome can be distinguished from CIDP by its rapid progression. > Patients with the syndrome tend to recover within 6-12 months, while > CIDP is a chronic disorder. > > How is CIDP Treated? > > Several treatment options are available. Drug treatment suppresses > the autoimmune reaction and decreases inflammation. The treatment is > carried out in two steps. The first approach has often been found > helpful. High dose of intravenous immune globulins (IVIG), > > {I was given this when I first went into the hospital and told I had > CIDP. I have had four other treatments since then.} > > protective blood proteins obtained from healthy volunteers, This > makes it very expensive. can be readily given through an arm vein. Or > another treatment, called plasma exchange (PE), or plasmapheresis, > > {This is the next treatment thay want to have me try.} > > some of the patient's blood is removed and the blood cells returned > without the liquid plasma portion of the patient's blood. It may work > by removing harmful antibodies contained in the plasma. For patients > unresponsive to steroids and immunoglobuline therapy, blood plasma > exchange (plasmapheres) may be a viable option. The planning and > implementation of plasmapheres is complex, as the procedure requires > access to a dialysis unit. The effects only last between 3 and 6 > weeks and treatment should therefore be repeated regularly. > Plasmapheres is not universally recommended owing to the risk of > cardiovascular side effects, especially in elderly patients. The > second treatment course aims to promote long-term stabilisation of > the condition (adjuvant therapy). Prednisone, similar to protective > anti-inflammatory corticosteroids that are normally made by the body, > may be used as the second step of the treatment for several reasons. > It often improves strength, can be conveniently taken by mouth and is > inexpensive. Side effects can limit its use. Some side effects such > as inhibited growth, decreased bone density (osteoporosis), muscle > weakness, psychological problems, developing diabetes, gastric > ulcers, high blood pressure, gaining weight and moon face are just a > few. > > {I have been on this medication since November. It has made me > stronger. Of course it has caused many different side effeccts. I was > told it is important not to stay on it to long and to lower the dose > as you go off it. } > > Treatment of CIDP is somewhat of an art. If steroid therapy, > immunoglobulin treatment fail, a number of immunosuppressive drugs > can be tried { > > This is the other NEW treatment they are going to also try on me. I > have been told that it takes five months before it has any effect.} > > (for example chemotherapy or drugs for transplantation patients). > The advantage of long-term chemotherapy is a reduced risk of > recurring episodes or permanent disability. Drugs including > cyclophosphamide, cyclosporine A, and mycophenalate work well as > supplementary treatments to stabilise the condition. However, as > experience of these medications is still limited they are used > restrictively in order to minimise the risk of serious adverse > effects. > > { I will need to be watched closely and get blood work done regularly > to find out if my body is absorbing the medications correctly.} > > If a patient shows good improvement with an initial treatment but > again evolves weakness it may be repeated or another therapy may be > tried. > > I AM SORRY I HAVE SUCH A LONG POST...BUT IT MAKES ME FEEL BETTER > EACH TIME I TELL MY STORY.....I REALLY AM IN NEED OF SOME HEALING > PRAYERS LATELY.....PLUS I HAVE SOME VERY DIFFICULT LIFE CHOICES TO > MAKE. THANK YOU FOR YOUR SUPPORT! > > > > > > > To worry, is like wishing for > something you don't want ! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 > > > > > > I AM A NEW MEMBER......MY NAME IS CATHY > > I WAS TOLD THAT I HAVE AN AUTO-IMMUNE CONDITION CALLED CIDP > > If the immune system fights the peripheral nerves by mistake, the > individual nerve fibres become inflammed and stop working properly. > Because the nerves to the feet and hands are the longest, the first > symptoms of GBS and CIDP are usually felt first in the limbs. These > symptoms are weakness (motor nerves) and pins and needles (sensory > nerves). > > As the illness progresses and more damage is done to the nerves, the > symptoms appear to move up the limbs. Sometimes weakness becomes > paralysis and the pins and needles can become very painful. > > If this all happens in a short period, the illness is acute and > called GBS. If it happens over a long period, the illness is chronic > and called CIDP. > > > IT HAS MADE MY LIFE VERY DIFFICULT SINCE THE ONSET IN SEPTEMBER OF > 2006.......MY LIFE IS GOING THROUGH A LOT OF LOSES AND I AM VERY MUCH > AFRAID OF BEING ON MY OWN. > > I have been working on my recovery but it has been going very > slow.....I have not made much improvement since I left MASS MY > HOMESTATE in November......Both my parents and I had thought when I > was in Mass that I would be able to return by Spring. We most > recently spoke with the best doctor who knows a lot about CIDP and it > looks as though my recovery is going to be more like years. That was > hard to accept but I have been reminded that I am special, courageous > and I will be able to get through this! I also finished PUTTING ALL > OF MY FRIENDS SUPPORTIVE WORDS ON my Gait belt and I have all of your > support with me during my Rehab. Speaking of Rehab....I got the > insurance company to pay for my Rehab that I have had since the > beginning of the year....plus to save money I am switching to a > wellness program at Rehab. I will work with a trainer instead of a > therapist......instead of paying $200 an hour I will only have to pay > $40 an hour. I just got my 401K released to me to pay for medical > costs. So I can pay for some of the medical equipment that I need. > Plus I found a local clinic to go to for a primary and I am on a > waiting list for a Jewish family services therapy clinic. I went to a > specialist for the sleep apnea problem and found out that I do have > it and the steroids is causing it to be worse and that the insurance > will not pay for the testing and visit. So I paid for the visit > almost $300 and decided not to go through with the sleep lab and > testing because it would be over $3000 and I spent $800 on the c- pap > and if things get worse with my breathing then we will deal with it > and go to the hospital. Well I don't go back to my neurologist until > the middle of next month....we will talk about the next treatment for > me. It looks as though I will be taking some other medication along > with the steroids. Mostly I have to continue doing my exercises so > that I don't get weaker. The hard part is walking with my walker > without falling to the floor because then I can't get up on my own. I > need to keep a phone with me at all times. I am feeling very > challenged about this recovery. I really have never liked to > exercise , rest or take pills and these are the three most important > things I have to do daily to have a successful recovery. > > I wanted to share with you some of my daily challenges > > going to the bathroom without accidents > washing and showering > walking and bending over without falling > fixing and eat meals and drinks without making a spill or getting > hurt or burnt > write or type without writing large or making mistakes > helping out with chores is something I wish I could do but i can't > going out of the house without support > taking medication without help opening and putting meds in a cup > > I was so excited to get this laptop because I really thought I would > be able to stay in touch with my kids daily or more often . I was > wrong they are so busy all the time and I try to send them messages > but they are more involved with school stuff and their friends. So I > asked them to try and call me once a week....but they never > remember....so I try and call them but again they are either to busy > when I call or sleeping. When I do get a chance to check in them they > seem to all be doing well in school. Plus they are ok with staying > together with their father. Jake MY OLDEST is doing well with his > first year at college at STCC. A YEAR YOUNGER just got his > drivers license and is starting his third year of Lacrosse, he his > playing goalie. Katy is finishing her second year of Jr high and is > 13 now. She spends a lot of time with the girls on her cheer leading > team. Unfortunately I have not been able to see my kids since > November......I can't do any flying right now and the kids are not > allowed to come to see me in Florida BECAUSE THERE DAD WON'T LET > THEM. So we will just have to wait until I recover OR I GET > VISITAIONS THROUGH THE COURT SYSTEM. > > I finally got together with My brother Tom and his family to > celebrate Xmas. We tried to get together with my brother Mike and his > family for the holidays. But my sister-in-law was in the hospital > over Xmas and New Years. Finally we were both well enough to get > together. We had a great Italian seafood feast and wonderful > breakfast brunch. We did some late Xmas shopping....I got my HAPPY > perfume that I usually get myself with the support of my lovely > ladies I work with and Curtis Blake Day School. I cried when they > arrived and when they left but that was because it was so nice to be > able to spend time together. > > Mostly I am so lucky and blessed to have two parents that are willing > to help take really good care of me. They are always trying to plan > fun things for us to do. They take me to the farmer's markets in town > and to the grocery stores were I get to use electric carts...LOL. I > went with my Dad to a Spring Training Baseball game with the > Cardinals and the Blue Jays this week. I had never been to a game it > was a lot of fun! They want to plan a trip to Busch Gardens with > another CIDP friend that I meet on-line who lives in the area. Plus > they would like to take me on a week long cruise when I am up to it. > So I have to say that my Parents are my saving miracle to help me > through my recovery. > > I applied for me and my daughter to have Emergency Handicap Housing > through The East Longmeadow Housing Authority IN MY HOMETOWN and they > accepted my application. Now I am on a waiting list the wait could be > up to three years I have been told. I want to hear a lot sooner from > them . I would also like to be back to work but it is really hard at > this point to tell how long of a day I could handle or how helpful I > could be. I applied for a summer job at my favorite vacation place in > Maine, Ferry Beach.....but it is really hard to say how I will be in > June when the job starts or if they may be willing to deal with me > and my disability. I choose it to try and work first because I know > it is a safe place and has handicap accessibility. I wonder how > things will be for me or if I will ever be able to drive again. > > I have been on-line with CIDP support groups and talked with others > with CIDP about how they have dealt with it. It is very helpful to > find out what treatments have worked and how long their recovery was. > It is interesting because everyone is so different and different > treatments work for different people. Some can do just about > everything again but others need to stay in wheelchairs forever. Even > though it is a rare condition I am finding people who do have it > around me, my mother's friends' husband, a roommate in Sarasota > Memorial Hospital and a women at Rehab. I just goes to show you what > a small world it is. > > Well Bowling Tournament and Mass Women's Bowling Annual Meeting time > is upon us and I will not be able to participate this year or get my > award for my First Place in person but I hope that someday I can go > to a bowling alley to see just what I can do! I do believe in > miracles because My Favorite roll-model let me know that her team got > second place in her division. I am so proud of them! > > > Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disease > of the peripheral nerves, i.e. nerves outside the brain and spinal > cord. Demyelination is the degeneration of the fatty insulation > covering the nerves (the myelin sheath). Polyneuropathy refers to the > fact that several nerves are affected. > > CIDP affects nerve fibres controlling muscle movement (motor > function), sensory information and sometimes autonomic functions > (over which one has no voluntary control), such as heartbeat and > digestion. The disease is symmetrical, meaning that it occurs on both > sides of the body. It may be slowly progressive or follow a pattern > of relapses and remissions. There is also an acute form, known as > Guillain-Barré syndrome (acute inflammatory demyelinating > polyneuropathy, AIDP). Although symptoms are similar, Guillain- Barré > syndrome can be distinguished from CIDP by its rapid progression. > Patients with the syndrome tend to recover within 6-12 months, while > CIDP is a chronic disorder. > > > > How is CIDP Treated? > > Several treatment options are available. Drug treatment suppresses > the autoimmune reaction and decreases inflammation. The treatment is > carried out in two steps. The first approach has often been found > helpful. High dose of intravenous immune globulins (IVIG), > > {I was given this when I first went into the hospital and told I had > CIDP. I have had four other treatments since then.} > > protective blood proteins obtained from healthy volunteers, This > makes it very expensive. can be readily given through an arm vein. Or > another treatment, called plasma exchange (PE), or plasmapheresis, > > {This is the next treatment thay want to have me try.} > > some of the patient's blood is removed and the blood cells returned > without the liquid plasma portion of the patient's blood. It may work > by removing harmful antibodies contained in the plasma. For patients > unresponsive to steroids and immunoglobuline therapy, blood plasma > exchange (plasmapheres) may be a viable option. The planning and > implementation of plasmapheres is complex, as the procedure requires > access to a dialysis unit. The effects only last between 3 and 6 > weeks and treatment should therefore be repeated regularly. > Plasmapheres is not universally recommended owing to the risk of > cardiovascular side effects, especially in elderly patients. The > second treatment course aims to promote long-term stabilisation of > the condition (adjuvant therapy). Prednisone, similar to protective > anti-inflammatory corticosteroids that are normally made by the body, > may be used as the second step of the treatment for several reasons. > It often improves strength, can be conveniently taken by mouth and is > inexpensive. Side effects can limit its use. Some side effects such > as inhibited growth, decreased bone density (osteoporosis), muscle > weakness, psychological problems, developing diabetes, gastric > ulcers, high blood pressure, gaining weight and moon face are just a > few. > > {I have been on this medication since November. It has made me > stronger. Of course it has caused many different side effeccts. I was > told it is important not to stay on it to long and to lower the dose > as you go off it. } > > Treatment of CIDP is somewhat of an art. If steroid therapy, > immunoglobulin treatment fail, a number of immunosuppressive drugs > can be tried { > > This is the other NEW treatment they are going to also try on me. I > have been told that it takes five months before it has any effect.} > > (for example chemotherapy or drugs for transplantation patients). > The advantage of long-term chemotherapy is a reduced risk of > recurring episodes or permanent disability. Drugs including > cyclophosphamide, cyclosporine A, and mycophenalate work well as > supplementary treatments to stabilise the condition. However, as > experience of these medications is still limited they are used > restrictively in order to minimise the risk of serious adverse > effects. > > { I will need to be watched closely and get blood work done regularly > to find out if my body is absorbing the medications correctly.} > > If a patient shows good improvement with an initial treatment but > again evolves weakness it may be repeated or another therapy may be > tried. > > I AM SORRY I HAVE SUCH A LONG POST...BUT IT MAKES ME FEEL BETTER > EACH TIME I TELL MY STORY.....I REALLY AM IN NEED OF SOME HEALING > PRAYERS LATELY.....PLUS I HAVE SOME VERY DIFFICULT LIFE CHOICES TO > MAKE. THANK YOU FOR YOUR SUPPORT! > Thank you for shareing so much of yourself with me/us. I just wanted to let you know that I will keep you in my prayers. hugs, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 I cannot understand -- cannot condone is more like it -- why life seems to just beat up on people like this. Oh, she's suffereing -- she's down! Let's all kick her. But I see it over and over and of course, I've been the kickee too many times. For those kinds of onslaughts, you look for great wonderfulness to follow, as recompense, and all too often the recompense is no more than, well, they stopped kicking you, didn't they? I would send you flowers if I could, and here I've done nothing but add witness to the thorns in the situation. Believe me, I am so sorry! My heart goes out to you, and I pray you better. I pray us all far better!! ----- Original Message ----- From: migrainemadness Sent: Saturday, May 05, 2007 4:43 PM Subject: [] Re: NEW MEMBER . I just wanted you to know how bad I feel for you. Most of the time I sit and feel sorry for my self, last year i was laid off from a job i had for 11 yrs and for the last 3 years I have been struggling with severe migrains..depression..avn in the right knee.. degenerative disk in the lower back and fibromyolgia then when my baby sister who is only 34 was in the hospital after having major surgery 14 hrs she had total blocked arteries of the heart when she was in recovery in Icu and I come home from the hospital after being up without sleep for 2 days my husband tells me he wants a divorce and leaves the next day this was in november the divorce is still not finalized because he is not wanting to give me a penny and it is looking like all i am going to get is enought to pay for insurance for 1 1/2 yrs even though he was the one that was having an affair with a woman from his church. I am in so much pain that I can no longer drive a car or stand or walk so I know that I can't work so I am going to go stay with my daughter for a little while but I don't want to mess up her marriage and then do stay with a friend but I have no idea how i will pay for anything but after reading your story it made me realize I am not alone there are alot of people going through hard times. So cathy any time you want to email me please do I would be more than happy to have you as my friend. > > I AM A NEW MEMBER......MY NAME IS CATHY> > I WAS TOLD THAT I HAVE AN AUTO-IMMUNE CONDITION CALLED CIDP> > If the immune system fights the peripheral nerves by mistake, the > individual nerve fibres become inflammed and stop working properly. > Because the nerves to the feet and hands are the longest, the first > symptoms of GBS and CIDP are usually felt first in the limbs. These > symptoms are weakness (motor nerves) and pins and needles (sensory > nerves).> > As the illness progresses and more damage is done to the nerves, the > symptoms appear to move up the limbs. Sometimes weakness becomes > paralysis and the pins and needles can become very painful.> > If this all happens in a short period, the illness is acute and > called GBS. If it happens over a long period, the illness is chronic > and called CIDP.> > IT HAS MADE MY LIFE VERY DIFFICULT SINCE THE ONSET IN SEPTEMBER OF > 2006.......MY LIFE IS GOING THROUGH A LOT OF LOSES AND I AM VERY MUCH > AFRAID OF BEING ON MY OWN.> > I have been working on my recovery but it has been going very > slow.....I have not made much improvement since I left MASS MY > HOMESTATE in November......Both my parents and I had thought when I > was in Mass that I would be able to return by Spring. We most > recently spoke with the best doctor who knows a lot about CIDP and it > looks as though my recovery is going to be more like years. That was > hard to accept but I have been reminded that I am special, courageous > and I will be able to get through this! I also finished PUTTING ALL > OF MY FRIENDS SUPPORTIVE WORDS ON my Gait belt and I have all of your > support with me during my Rehab. Speaking of Rehab....I got the > insurance company to pay for my Rehab that I have had since the > beginning of the year....plus to save money I am switching to a > wellness program at Rehab. I will work with a trainer instead of a > therapist......instead of paying $200 an hour I will only have to pay > $40 an hour. I just got my 401K released to me to pay for medical > costs. So I can pay for some of the medical equipment that I need. > Plus I found a local clinic to go to for a primary and I am on a > waiting list for a Jewish family services therapy clinic. I went to a > specialist for the sleep apnea problem and found out that I do have > it and the steroids is causing it to be worse and that the insurance > will not pay for the testing and visit. So I paid for the visit > almost $300 and decided not to go through with the sleep lab and > testing because it would be over $3000 and I spent $800 on the c-pap > and if things get worse with my breathing then we will deal with it > and go to the hospital. Well I don't go back to my neurologist until > the middle of next month....we will talk about the next treatment for > me. It looks as though I will be taking some other medication along > with the steroids. Mostly I have to continue doing my exercises so > that I don't get weaker. The hard part is walking with my walker > without falling to the floor because then I can't get up on my own. I > need to keep a phone with me at all times. I am feeling very > challenged about this recovery. I really have never liked to > exercise , rest or take pills and these are the three most important > things I have to do daily to have a successful recovery. > > I wanted to share with you some of my daily challenges> > going to the bathroom without accidents > washing and showering> walking and bending over without falling> fixing and eat meals and drinks without making a spill or getting > hurt or burnt> write or type without writing large or making mistakes> helping out with chores is something I wish I could do but i can't > going out of the house without support> taking medication without help opening and putting meds in a cup> > I was so excited to get this laptop because I really thought I would > be able to stay in touch with my kids daily or more often . I was > wrong they are so busy all the time and I try to send them messages > but they are more involved with school stuff and their friends. So I > asked them to try and call me once a week....but they never > remember....so I try and call them but again they are either to busy > when I call or sleeping. When I do get a chance to check in them they > seem to all be doing well in school. Plus they are ok with staying > together with their father. Jake MY OLDEST is doing well with his > first year at college at STCC. A YEAR YOUNGER just got his > drivers license and is starting his third year of Lacrosse, he his > playing goalie. Katy is finishing her second year of Jr high and is > 13 now. She spends a lot of time with the girls on her cheer leading > team. Unfortunately I have not been able to see my kids since > November......I can't do any flying right now and the kids are not > allowed to come to see me in Florida BECAUSE THERE DAD WON'T LET > THEM. So we will just have to wait until I recover OR I GET > VISITAIONS THROUGH THE COURT SYSTEM.> > I finally got together with My brother Tom and his family to > celebrate Xmas. We tried to get together with my brother Mike and his > family for the holidays. But my sister-in-law was in the hospital > over Xmas and New Years. Finally we were both well enough to get > together. We had a great Italian seafood feast and wonderful > breakfast brunch. We did some late Xmas shopping....I got my HAPPY > perfume that I usually get myself with the support of my lovely > ladies I work with and Curtis Blake Day School. I cried when they > arrived and when they left but that was because it was so nice to be > able to spend time together. > > Mostly I am so lucky and blessed to have two parents that are willing > to help take really good care of me. They are always trying to plan > fun things for us to do. They take me to the farmer's markets in town > and to the grocery stores were I get to use electric carts...LOL. I > went with my Dad to a Spring Training Baseball game with the > Cardinals and the Blue Jays this week. I had never been to a game it > was a lot of fun! They want to plan a trip to Busch Gardens with > another CIDP friend that I meet on-line who lives in the area. Plus > they would like to take me on a week long cruise when I am up to it. > So I have to say that my Parents are my saving miracle to help me > through my recovery.> > I applied for me and my daughter to have Emergency Handicap Housing > through The East Longmeadow Housing Authority IN MY HOMETOWN and they > accepted my application. Now I am on a waiting list the wait could be > up to three years I have been told. I want to hear a lot sooner from > them . I would also like to be back to work but it is really hard at > this point to tell how long of a day I could handle or how helpful I > could be. I applied for a summer job at my favorite vacation place in > Maine, Ferry Beach.....but it is really hard to say how I will be in > June when the job starts or if they may be willing to deal with me > and my disability. I choose it to try and work first because I know > it is a safe place and has handicap accessibility. I wonder how > things will be for me or if I will ever be able to drive again.> > I have been on-line with CIDP support groups and talked with others > with CIDP about how they have dealt with it. It is very helpful to > find out what treatments have worked and how long their recovery was. > It is interesting because everyone is so different and different > treatments work for different people. Some can do just about > everything again but others need to stay in wheelchairs forever. Even > though it is a rare condition I am finding people who do have it > around me, my mother's friends' husband, a roommate in Sarasota > Memorial Hospital and a women at Rehab. I just goes to show you what > a small world it is.> > Well Bowling Tournament and Mass Women's Bowling Annual Meeting time > is upon us and I will not be able to participate this year or get my > award for my First Place in person but I hope that someday I can go > to a bowling alley to see just what I can do! I do believe in > miracles because My Favorite roll-model let me know that her team got > second place in her division. I am so proud of them!> > Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disease > of the peripheral nerves, i.e. nerves outside the brain and spinal > cord. Demyelination is the degeneration of the fatty insulation > covering the nerves (the myelin sheath). Polyneuropathy refers to the > fact that several nerves are affected. > > CIDP affects nerve fibres controlling muscle movement (motor > function), sensory information and sometimes autonomic functions > (over which one has no voluntary control), such as heartbeat and > digestion. The disease is symmetrical, meaning that it occurs on both > sides of the body. It may be slowly progressive or follow a pattern > of relapses and remissions. There is also an acute form, known as > Guillain-Barré syndrome (acute inflammatory demyelinating > polyneuropathy, AIDP). Although symptoms are similar, Guillain-Barré > syndrome can be distinguished from CIDP by its rapid progression. > Patients with the syndrome tend to recover within 6-12 months, while > CIDP is a chronic disorder. > > How is CIDP Treated?> > Several treatment options are available. Drug treatment suppresses > the autoimmune reaction and decreases inflammation. The treatment is > carried out in two steps. The first approach has often been found > helpful. High dose of intravenous immune globulins (IVIG),> > {I was given this when I first went into the hospital and told I had > CIDP. I have had four other treatments since then.} > > protective blood proteins obtained from healthy volunteers, This > makes it very expensive. can be readily given through an arm vein. Or > another treatment, called plasma exchange (PE), or plasmapheresis, > > {This is the next treatment thay want to have me try.}> > some of the patient's blood is removed and the blood cells returned > without the liquid plasma portion of the patient's blood. It may work > by removing harmful antibodies contained in the plasma. For patients > unresponsive to steroids and immunoglobuline therapy, blood plasma > exchange (plasmapheres) may be a viable option. The planning and > implementation of plasmapheres is complex, as the procedure requires > access to a dialysis unit. The effects only last between 3 and 6 > weeks and treatment should therefore be repeated regularly. > Plasmapheres is not universally recommended owing to the risk of > cardiovascular side effects, especially in elderly patients. The > second treatment course aims to promote long-term stabilisation of > the condition (adjuvant therapy). Prednisone, similar to protective > anti-inflammatory corticosteroids that are normally made by the body, > may be used as the second step of the treatment for several reasons. > It often improves strength, can be conveniently taken by mouth and is > inexpensive. Side effects can limit its use. Some side effects such > as inhibited growth, decreased bone density (osteoporosis), muscle > weakness, psychological problems, developing diabetes, gastric > ulcers, high blood pressure, gaining weight and moon face are just a > few. > > {I have been on this medication since November. It has made me > stronger. Of course it has caused many different side effeccts. I was > told it is important not to stay on it to long and to lower the dose > as you go off it. }> > Treatment of CIDP is somewhat of an art. If steroid therapy, > immunoglobulin treatment fail, a number of immunosuppressive drugs > can be tried {> > This is the other NEW treatment they are going to also try on me. I > have been told that it takes five months before it has any effect.}> > (for example chemotherapy or drugs for transplantation patients). > The advantage of long-term chemotherapy is a reduced risk of > recurring episodes or permanent disability. Drugs including > cyclophosphamide, cyclosporine A, and mycophenalate work well as > supplementary treatments to stabilise the condition. However, as > experience of these medications is still limited they are used > restrictively in order to minimise the risk of serious adverse > effects.> > { I will need to be watched closely and get blood work done regularly > to find out if my body is absorbing the medications correctly.}> > If a patient shows good improvement with an initial treatment but > again evolves weakness it may be repeated or another therapy may be > tried.> > I AM SORRY I HAVE SUCH A LONG POST...BUT IT MAKES ME FEEL BETTER > EACH TIME I TELL MY STORY.....I REALLY AM IN NEED OF SOME HEALING > PRAYERS LATELY.....PLUS I HAVE SOME VERY DIFFICULT LIFE CHOICES TO > MAKE. THANK YOU FOR YOUR SUPPORT!> > > > > > > To worry, is like wishing for > something you don't want !> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 Hello everyone~ We don't see things as they are; we see things as we are. -Anius Nin When I was first misdiagnosed and then, years later correctly diagnosed with an autoimmune disease I was told that I would be on medication for the rest of my life. I remember when I first heard that I didn't believe it. I knew that there would be a day when I would not be dependant on medication to make me feel well. At the time I was working with a phenominal therapist who gave me permission on a weekly basis to show up to therapy exactly as I was - which at times - wasn't too pretty. As with many of you, I took a leave of absence and was unable to leave my house for a period of time. I was also gravely depressed. Interestly enough, my therapist didn't think I needed depression medication. She just kept working on my THINKING and the thoughts I held about myself. That is why I began with that quote. At the time of the diagnosis the wayI was - was filled with victim mentality, poor me, like my life happened to me, I felt sorry for myself that I was in this spot, that no one understood, that no one came in and rescued me, etc, etc, etc. Boy oh boy, my thoughts were all over the place. My relationships were as well. Anyway - She introduced me to a wonderful insightful and wise individual- Louis Hay and the book You Can Heal Your Life. That became my bible for a while, that and my journal. I set about changing 'how I saw things'. A friend of my, a wonderful musician in the Positive Music field, Greg Tamblin, wrote a song called 'Unconditional Love' or better known as Evy's Song. It's a true story about a woman and her road to healing - in it he says that she sat naked in front of a mirror in her wheel chair every day and wrote down every thought that came into her about her self. In the beginning the thoughts were all negative, but then, they began to change, and so did she. Her life expectancy was I believe less that 2 years, that was over 10 years ago and she is alive today. You can google his name and find that song - it is a powerful reminder of how we can change our life by changing how we approach our life. Not easy, dilligent work, but can be done. The other great thing I learned from my experience is that I am not my illness. I am - a person who has thoughts, feelings, ideas, concepts, and is beautiful, inside and out (okay - I couldn't exactly claim all THAT at that time, but over time and with continued work I can now!) But, I knew that I wasn't my illness, that's for sure. And, I wasn't willing to surrender that thought. I laid in bed for hours and days (cause I had to) doing visualizations of the repair work that needed to be done inside of me to heal me. Then I applied 'believability'. I needed to believe it in order for it to happen. That had it's tough moments. I did have some friends/supports who could believe it for me when my internal strength was zapped. Anyway - I thought things were getting desperate, they were talking about surgery. Time was nearing, I was beginning to feel like all the time and application wasn't paying off. Surgery was looking inevitable, a surgery that would 'change my life forever'. Not something I wanted. Bad moment in time. My therapist helped me see beyond that possibility to the possitility that my body responds to the healing that I was giving it...and within a few weeks things began to change. And, when I went back to the doctor he stated that he would postpone surgery. I continued to work on my self, my thoughts, my victim mentality, catching every thought that took the power out of me, replacing it with a thought that put the power back in me...and so it went. I share my story with you all, in the hopes that you may be inspired to see beyond where you are, to see things, not as they are, but whole and complete. We are each powerful light beings, all here together to share in this collective experience on Earth. It has been proven time and time again that the application of thought/word/behavior can change any situation and things can be created aknew. Myrtle Fillmore, the co-founder of Unity, took two years of her life to heal herself. She did this in a similar fashion to what Louis Hay speaks to. For her, the statement that changed her life was given to her by someone else "You are a Child of God, you do not inherit illness". And, Myrtle was off and running. I apologize for the long message, I know that things, at times, can look bleak, and we can't find the way to shift things around so that things begin to shift. I really get that, and yet, I know that if we just begin somewhere, that over time, little by little, things do begin to shift. It is the Law of Mind Action - or the Law of Attraction. The Universe supports us in our wellbeingness. Peace and blessings to you all - I hold you all in my heart - EVELYN BELL <beleve2005@...> wrote: . Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 Hello there , I am so glad you took the time to share with all of us such a brave example of healing and confidence and faith. I can completely understand you, when you talk about the Victim mentality.Let's just say, I have been there and done that, and brought me nothing but heartbroken feelings.When I was visited by the inevitable , first I froze with those feelings but then , in a hard moment of internal meditation I saw I had a choice, I could be the victim or the Volunteer, and Being a volunteer gave the confidence to understand and belief that I had a free will, maybe not to the extent to avoid bad things to happen but the choice to choose how to face those moments.We really are what we think... I want to take a personal moment to welcome you to our group and say that I just loved your post, you are such a brave and courageous soul... I am truly proud of you honey. You are my hero now.... Liane Recent Activity> > 82> New Members> > 5> New Files> > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.