AmyKenneth
Mar 21, 2004, 08:41 AM
Hi everyone!
I just recently was told that I have Primary stage 3 Lymphedema. I start therapy on 2-17-2004. It's been a long hard battle to get this treatment. My PCP (Primary Doctor) is not educated about Lymphedema. Those that don't know Lymphedema is also known by the term LE.
Just a little history. Back in 2001 I weighed about 300 pounds, although I was still considered obese my ability to be mobile was not a hindrance. I have been overweight for the majority of my life. As I thought back to some events in my life I remember an instance when we where moving that I had fallen on some concrete steps. I now believe like my therapist that it triggered my LE to come out in full force. It was a couple of days later. I had got up really fast one morning and needed to slip something on really fast. I put my pants on from the night before. Well, the same pants that fit me the night before didn't fit my calf. I honestly thought at the time that I had just gained some weight, but it was always weird it happened that way. I didn't think much more about it.
A couple of months later, I had to get even larger pants. I've always been larger in the bottom, than the top. So I set out for more clothes. It was also about this time fitting behind a steering wheel became very hard, again blamed it all on my weight. Around March of 2002 something was not right my socks would not fit anymore. I had to wear bootie type socks because my ankles was no more. It just disappeared. It was at this point I thought I have to get control of my weight. I started looking in the "LAP BAND" which is a form of bariatric weight loss surgery. After reading about how it had not been done on many larger patients and the fact I didn't have insurance at the time, I just dismissed it and moved on. Months passed and things got harder and harder. I knew something was wrong again I blamed myself, yet I had not changed my diet or anything. I didn't know what was happening to me. I prayed for an answer to my problem. I was now down to the point that walking was becoming harder to do, I was very short of breath. My husband was the only one working so living was difficult. We had a business that went bad. My husband Kenneth on November 2002 applied for a new job with the state. We where at least looking at benefits. When we had applied they just had the elections for Governor so all jobs where put on hold. I was upset, I knew I'd never get the help I needed. I was so desperate. One day in April of 2003 we got a letter. It was a letter for a job interview for the state job. I just knew when it came that it was an ANSWER. That God had come to help me because I wanted help. Kenneth got the job. By this time things really had got worse. I would not go out of the house. I could not walk any long distances. I didn't want to see people, even family for fear of rejection or ridicule. In May of 2003 I started the Atkins diet, my parents and family were getting very concerned about me. I was concerned too I was now 599 pounds, I was now down to not going anywhere except to the bathroom, sleep and sit on the Internet all day. I was totally dedicated to the diet. I went 2 months. I lost a total of 50 pounds I was soooo happy, then all of a sudden the diet didn't change, nothing changed. I was not losing, instead was gaining back. I didn't know what was wrong, I was so upset. By this time our insurance had started so I went to our primary doctor. She ordered a blood test. The results came back that I had hypothyroidism. She said that was why my weight was not being consistent and she said not until I get my thyroid under control will I be able to lose weight and keep it off. It was like my body was working against me. I felt almost a relief cause I started to realize maybe I had not done all this to my self. I had blamed my self for my weight gain all these months, but it still didn't make sense about my mobility. Something was clearly wrong with my legs. It was about this time I decided again to look back into the gastric bypass. I felt it was my only hope to live. It was August 2003 I went back to my PCP and said there is something wrong with my legs, they are heavy and tight. She said, "Oh it's edema, let me prescribe some Lasix." I was happy because the first few times my legs felt better after taking the pills. As months went by something was still not right. I questioned them again about it and they upped my diuretics more. I was still looking into the gastric bypass. In November 2003 I decided I wanted to go to a support meeting for surgery. We drove all the way to Atlanta. The meeting went great. This lady that was one of the speakers came up to me afterwards and said, "You must have lymphedema, I do too" I was like lympha what? I told her I had no idea what that was, so she started explaining how she had the gastric bypass and suddenly started gaining weight. They found out that she had lymphedema. She said she got into therapy and it did wonders for her. Well, I went home and she had given me some websites, but I just brushed them aside as SURE... A couple of weeks past and I thought, well I guess I'll look into this. So I did a web search. I found several picture, but nothing like my legs. Finally one day I got a hold of a site with a lady that weight 400+ pounds. Her legs looked a lot like mine. I was in shock. So I did more and more studying. I finally came to my own conclusion I had this. I went back to my PCP in the beginning of December and asked her about it. She didn't know much so dismissed it. I then got to talking with the main PCP there and he said something about elephantiasis. Again nothing was mentioned about treatment. I had even asked, it was like NO BIG DEAL. You are FAT deal with it. I went home upset and crying. I didn't know what else to do. So I thought about it a couple of days and said NO I am going back they ARE going to get me help. Finally my PCP explained the problem. She could not refer me because the therapist I needed to see was not at a hospital that she could refer to, so she suggested my cardiologist. That day I came home and we called his office. No one ever called back, it was during the Christmas holiday. The first of 2004 got here and I got a referral in the mail from him. I was so thrilled. FINALLY someone was going to help me. I took it to my PCP for the authorization and she didn't think it was going to work. A couple of days later I finally got a call for an appointment to see this therapist. My first meeting was great, she is very warm and friendly. She knows her stuff and really relates to the patient. She got her training in Germany. I start 2-17-2004. She took measurement so I will keep you all up to date on how therapy helps me. This is where I am now, it's been a hard long road, but for those going thru this DO NOT GIVE UP. This is your body and your life. NO ONE ELSE WILL BE YOUR ADVOCATE EXCEPT YOU! Remember that.
Amy AKA Lymph Butterfly...
I have lost 65 pounds from therapy in 20 days.
I just recently was told that I have Primary stage 3 Lymphedema. I start therapy on 2-17-2004. It's been a long hard battle to get this treatment. My PCP (Primary Doctor) is not educated about Lymphedema. Those that don't know Lymphedema is also known by the term LE.
Just a little history. Back in 2001 I weighed about 300 pounds, although I was still considered obese my ability to be mobile was not a hindrance. I have been overweight for the majority of my life. As I thought back to some events in my life I remember an instance when we where moving that I had fallen on some concrete steps. I now believe like my therapist that it triggered my LE to come out in full force. It was a couple of days later. I had got up really fast one morning and needed to slip something on really fast. I put my pants on from the night before. Well, the same pants that fit me the night before didn't fit my calf. I honestly thought at the time that I had just gained some weight, but it was always weird it happened that way. I didn't think much more about it.
A couple of months later, I had to get even larger pants. I've always been larger in the bottom, than the top. So I set out for more clothes. It was also about this time fitting behind a steering wheel became very hard, again blamed it all on my weight. Around March of 2002 something was not right my socks would not fit anymore. I had to wear bootie type socks because my ankles was no more. It just disappeared. It was at this point I thought I have to get control of my weight. I started looking in the "LAP BAND" which is a form of bariatric weight loss surgery. After reading about how it had not been done on many larger patients and the fact I didn't have insurance at the time, I just dismissed it and moved on. Months passed and things got harder and harder. I knew something was wrong again I blamed myself, yet I had not changed my diet or anything. I didn't know what was happening to me. I prayed for an answer to my problem. I was now down to the point that walking was becoming harder to do, I was very short of breath. My husband was the only one working so living was difficult. We had a business that went bad. My husband Kenneth on November 2002 applied for a new job with the state. We where at least looking at benefits. When we had applied they just had the elections for Governor so all jobs where put on hold. I was upset, I knew I'd never get the help I needed. I was so desperate. One day in April of 2003 we got a letter. It was a letter for a job interview for the state job. I just knew when it came that it was an ANSWER. That God had come to help me because I wanted help. Kenneth got the job. By this time things really had got worse. I would not go out of the house. I could not walk any long distances. I didn't want to see people, even family for fear of rejection or ridicule. In May of 2003 I started the Atkins diet, my parents and family were getting very concerned about me. I was concerned too I was now 599 pounds, I was now down to not going anywhere except to the bathroom, sleep and sit on the Internet all day. I was totally dedicated to the diet. I went 2 months. I lost a total of 50 pounds I was soooo happy, then all of a sudden the diet didn't change, nothing changed. I was not losing, instead was gaining back. I didn't know what was wrong, I was so upset. By this time our insurance had started so I went to our primary doctor. She ordered a blood test. The results came back that I had hypothyroidism. She said that was why my weight was not being consistent and she said not until I get my thyroid under control will I be able to lose weight and keep it off. It was like my body was working against me. I felt almost a relief cause I started to realize maybe I had not done all this to my self. I had blamed my self for my weight gain all these months, but it still didn't make sense about my mobility. Something was clearly wrong with my legs. It was about this time I decided again to look back into the gastric bypass. I felt it was my only hope to live. It was August 2003 I went back to my PCP and said there is something wrong with my legs, they are heavy and tight. She said, "Oh it's edema, let me prescribe some Lasix." I was happy because the first few times my legs felt better after taking the pills. As months went by something was still not right. I questioned them again about it and they upped my diuretics more. I was still looking into the gastric bypass. In November 2003 I decided I wanted to go to a support meeting for surgery. We drove all the way to Atlanta. The meeting went great. This lady that was one of the speakers came up to me afterwards and said, "You must have lymphedema, I do too" I was like lympha what? I told her I had no idea what that was, so she started explaining how she had the gastric bypass and suddenly started gaining weight. They found out that she had lymphedema. She said she got into therapy and it did wonders for her. Well, I went home and she had given me some websites, but I just brushed them aside as SURE... A couple of weeks past and I thought, well I guess I'll look into this. So I did a web search. I found several picture, but nothing like my legs. Finally one day I got a hold of a site with a lady that weight 400+ pounds. Her legs looked a lot like mine. I was in shock. So I did more and more studying. I finally came to my own conclusion I had this. I went back to my PCP in the beginning of December and asked her about it. She didn't know much so dismissed it. I then got to talking with the main PCP there and he said something about elephantiasis. Again nothing was mentioned about treatment. I had even asked, it was like NO BIG DEAL. You are FAT deal with it. I went home upset and crying. I didn't know what else to do. So I thought about it a couple of days and said NO I am going back they ARE going to get me help. Finally my PCP explained the problem. She could not refer me because the therapist I needed to see was not at a hospital that she could refer to, so she suggested my cardiologist. That day I came home and we called his office. No one ever called back, it was during the Christmas holiday. The first of 2004 got here and I got a referral in the mail from him. I was so thrilled. FINALLY someone was going to help me. I took it to my PCP for the authorization and she didn't think it was going to work. A couple of days later I finally got a call for an appointment to see this therapist. My first meeting was great, she is very warm and friendly. She knows her stuff and really relates to the patient. She got her training in Germany. I start 2-17-2004. She took measurement so I will keep you all up to date on how therapy helps me. This is where I am now, it's been a hard long road, but for those going thru this DO NOT GIVE UP. This is your body and your life. NO ONE ELSE WILL BE YOUR ADVOCATE EXCEPT YOU! Remember that.
Amy AKA Lymph Butterfly...
I have lost 65 pounds from therapy in 20 days.