The title says it all. Andrea with the Lymphedema Clinic called and cancelled. I was so upset, I did not post about it. She is supposed to call me back with more appointments soon. All I seem to do anymore is wait....
But yet...no one has to wait for me :o(
Thursday, January 28, 2010
Monday, January 18, 2010
A Brand New Start : Part 2
After much begging and pleading with my doctor to help me with the enormous amount of pain and swelling in my legs, I went to see someone at the Lymphedema clinic at the hospital. It was a long time coming. I asked my primary care physician (PCP) to send me years ago, and she felt there was no need and dismissed it. All the while my legs kept getting bigger and I grew steadily more depressed. With having two herniated discs in my back, migraines almost daily (they have slowed somewhat with a couple changes in medications, but they are still very much part of my life)and the pain from the increasingly swollen legs, I was absolutely miserable. I am stubborn and try very hard NOT to take medication for pain. When I do take medication, I feel as though the pain has won, and I have lost the battle of that specific day. I fear becoming dependent on the medication, I want to be pain AND medication free. That doesn't seem like a lot to ask for, and yet it is a fight sometimes to get someone to listen to me. My family listens but cannot do much. Doctors well, they are great, but sometimes with them being so busy, they can lose their naturally empathetic nature and just see me as just another complainer.
Finally the straw that finally broke the camels back, is when the Active Living Clinic (for weight loss and better nutrition) refused to believe me that I have been following their plan, basically it was Canada's Food Guide. OK, so I slipped occasionally. Don't we all! But for the most part, I had no appetite anymore,and I really tried. I also complained to them about my 'growing' legs. Despite losing weight in my arms and upper torso, my legs were gaining and the scale just kept creeping up. I measured them and could feel the increasing pressure in the lower legs. The physio therapist stated I have lymphedema and need it treated and have my legs wrapped. This was the first I heard about this disorder, and from there that began my search for my health. The endocrinologist told me there was nothing further he could do with regards to my weight and that I would have to "fix my issues mentally, before I could proceed further". AHHHH Yes...the old "It's in your head, we don't know how to fix you, and you are so not worth my time" Been there many times before, and I heard it again. Here we go again! Me crying in another doctors office, begging for help, and they tell me I am a lost cause. I wanted to die. I am not suicidal, not at all. I just didn't want to live anymore, I would never terminate my life, but I did wish I were dead. The dietitian came in and stared me down and pretty much called me a liar without using those exact words. She said if I was doing everything right I would be losing weight. I must not be doing it right and she had no further advise for me either. Needless the say the three 'professionals' listed above were all from the 'Active Living Clinic' The only one of any use was the physio therapist who saw that my legs were NOT NORMAL.
Back to my primary care physician (PCP), The first time I requested to see someone about the lymphedema, she turned me down, after doing more and more research online, I concluded I did have lymphedema, as most every person's legs looked like mine and we all shared a similar issue with doctors and dietitians telling us to lose weight, and no success. I also read up on Lipedema to a smaller degree. I will elaborate more as my posts go on.
I went back to my PCP and this time, I did not ask for a referral, I TOLD her I wanted a referral. She agreed to an assessment in the lymphedema clinic. She told me to call and provided the number for the clinic. I called and asked if they received my referral, no they had not. I called my PCP's office and could not get through for days. Finally I asked my husband to go and see them and request a copy of the referral be resent. The secretary acted confused,and booked an appointment for me with my PCP. I went to the appointment and asked again about the referral, she stated she would send it along shortly. I left and about a week later called the lymphedema clinic about this referral, they still had not received it, this happened two more times, with the PCPs office and referral, to the call to Lymphedema clinic. Finally the lymphedema clinic advised that if my PCP could write up a quick note I would be able to walk the referral in and that may be faster. I did just that. I went to see my PCP which, by the way, was about 10 months since I requested the referral. I took the referral right up to the clinic and handed it to them personally. Within a week, I had my appointment for the assessment. I was diagnosed with Lipedema and secondary Lymphedema. I will do separate posts to differentiate between the two and to highlight some profound information, that was a positive turn around for me.
Therapy starts tomorrow. It includes Manual Lymph draining (massage technique) wrapping my legs to reduce them, and then eventually graduating to support stockings. This is a life long disorders, I will have to maintain the care of these legs to prevent them from swelling again.
I will be posting pictures of my legs now...and as treatment goes along, hopefully some impressive pictures of results. :o)
Finally the straw that finally broke the camels back, is when the Active Living Clinic (for weight loss and better nutrition) refused to believe me that I have been following their plan, basically it was Canada's Food Guide. OK, so I slipped occasionally. Don't we all! But for the most part, I had no appetite anymore,and I really tried. I also complained to them about my 'growing' legs. Despite losing weight in my arms and upper torso, my legs were gaining and the scale just kept creeping up. I measured them and could feel the increasing pressure in the lower legs. The physio therapist stated I have lymphedema and need it treated and have my legs wrapped. This was the first I heard about this disorder, and from there that began my search for my health. The endocrinologist told me there was nothing further he could do with regards to my weight and that I would have to "fix my issues mentally, before I could proceed further". AHHHH Yes...the old "It's in your head, we don't know how to fix you, and you are so not worth my time" Been there many times before, and I heard it again. Here we go again! Me crying in another doctors office, begging for help, and they tell me I am a lost cause. I wanted to die. I am not suicidal, not at all. I just didn't want to live anymore, I would never terminate my life, but I did wish I were dead. The dietitian came in and stared me down and pretty much called me a liar without using those exact words. She said if I was doing everything right I would be losing weight. I must not be doing it right and she had no further advise for me either. Needless the say the three 'professionals' listed above were all from the 'Active Living Clinic' The only one of any use was the physio therapist who saw that my legs were NOT NORMAL.
Back to my primary care physician (PCP), The first time I requested to see someone about the lymphedema, she turned me down, after doing more and more research online, I concluded I did have lymphedema, as most every person's legs looked like mine and we all shared a similar issue with doctors and dietitians telling us to lose weight, and no success. I also read up on Lipedema to a smaller degree. I will elaborate more as my posts go on.
I went back to my PCP and this time, I did not ask for a referral, I TOLD her I wanted a referral. She agreed to an assessment in the lymphedema clinic. She told me to call and provided the number for the clinic. I called and asked if they received my referral, no they had not. I called my PCP's office and could not get through for days. Finally I asked my husband to go and see them and request a copy of the referral be resent. The secretary acted confused,and booked an appointment for me with my PCP. I went to the appointment and asked again about the referral, she stated she would send it along shortly. I left and about a week later called the lymphedema clinic about this referral, they still had not received it, this happened two more times, with the PCPs office and referral, to the call to Lymphedema clinic. Finally the lymphedema clinic advised that if my PCP could write up a quick note I would be able to walk the referral in and that may be faster. I did just that. I went to see my PCP which, by the way, was about 10 months since I requested the referral. I took the referral right up to the clinic and handed it to them personally. Within a week, I had my appointment for the assessment. I was diagnosed with Lipedema and secondary Lymphedema. I will do separate posts to differentiate between the two and to highlight some profound information, that was a positive turn around for me.
Therapy starts tomorrow. It includes Manual Lymph draining (massage technique) wrapping my legs to reduce them, and then eventually graduating to support stockings. This is a life long disorders, I will have to maintain the care of these legs to prevent them from swelling again.
I will be posting pictures of my legs now...and as treatment goes along, hopefully some impressive pictures of results. :o)
Wednesday, January 13, 2010
A Brand New Start : Part 1
For years, I, like so many, have been battling my weight. I am at my biggest and I have fought for years to gain control. I have been so ashamed of myself, slowly turning inside of myself. I love computers. I can speak with people and share my life, without really needing to see them. I so dislike my appearance; soon this will change. This is the 'start' of me gaining my control back. First, I need to explain how I got here.
For years I have had issues with my legs and huge rear end. It all started about when I was 15, I noticed my legs were getting thicker, despite the fact that I was an avid jogger back then. The doctors and everyone else simply said it is because I am building up my calf muscles. I eventually started having trouble buying pants. My calves were large, my thighs were bigger and my ass was HUGE...and yet I had a smaller waist. This meant most of my pants were falling off my hips, tight on my legs, and not on my waist. Belts helped temporarily until I decided to wear pleated pants. They were a life saver to me, in 'normal' people when they wore them they appeared to have blousy trousers, for me they were 'just right'. I continued to live my life, and then my life slowly started to fall apart. I had a series of bad, abusive relationships. I did resort to food for comfort WHEN I had food, but that is another story.
After I had my first child, I started gaining weight almost exponentially, or at least it felt that way. I remember having a complete meltdown at my legs...just my legs...I cried and panicked when I was telling my family about how big they are getting. I was dismissed. My brother stated he has big legs too, and showed me his calves, but um... he is male and being a male, his makeup and structure is a little different than that of women. I accepted it, and became more and more self conscious of my appearance. I was slowly becoming more and more of a recluse, I just wasn't aware of it. YET
I moved away to go to school, just me and my little man (my son). We moved to a new city where I knew NO ONE. I gradually made friends, but while I was waiting, food was my friend. So I know I had a large part to play in my "becoming supersized" What I did not have control over was how large my ass and legs would become. Shorts were no longer an item I would allow in my closet or drawers. Dresses that did not go to my ankles were a flat out NONO. I did have a bathing suit and even though it was rarely used I reserved my bathing suit for when I went to a water park OUTSIDE of town or a sparsely populated beach where no one knew me, or if they could, at least they would not know me.
I hated and still hate looking at myself in the mirror and seeing what I DID to myself. I begged for help, with so many doctors. They put me on diets (and believe it or not, I did follow them. I tried diet pills and exercise and even resorted to only eating one meal a day). I tried EVERYTHING and my legs got bigger and I would only lose a small amount of weight overall. One of my docs said at the time "Well, you are healthy, perhaps you are meant to be this way" Physically I was fine. I would get awful pains in my lower legs from time to time, but I always had those as far back as I remember. Other doctors said they had no answers, and pretty much gave up, and in time I gave up too. When I was younger, I didn't have the blood pressure issues and bad back issues that are such an integral, albeit negative, part of my life right now. I did have back pain, but episodes were 'few and far between' and those related issues were mild compared to painful hell that is my life now. As time moved on, my weight became more and more of an issue. I had my daughter and during that pregnancy I had pregnancy induced hypertension. Although it was not as severe as when I was pregnant, it was something I would come to live with long after my littlest angel was born.
My daughter was only a year old when I decided to start working, I became my own boss. I owned and operated my own taxis. About six months in to my new business venture, a lady ran a red light in the wee hours of the morning (5AM), she had just come out from a coffee run to Tim Horton's and was late getting back to work. So instead of stopping she decided to charge through... and the rest is history!! I won't bore you with the details. Needless to say, I was in excruciating pain, pretty much bedridden (well couch ridden anyway)and I lost my precious car...I loved that car. I loved it more once I found out from the adjusters that car may have actually even saved my life due to being made with 'real metal'.
Whoa...I can really go off on a tangent there, can't I.... I always wondered why for years I thought my name was "Shut-up Danielle" I TALKED ALL THE TIME!!! Much to the annoyance of family, friends, teachers, and countless others. No wonder sometimes I don't get taken seriously. I mean really, I have valid issues, people just turn down their listening when I talk. Now that I am a mother and have children much like myself; I understand, I really do and I do make a concerted effort to listen to them, as I know the pain that is felt when you are ignored or yelled at simply for 'talking'. This is another topic and I must get back on track or you, my dear readers, will not finish reading my post.
This was all to set the stage for my upcoming post: A Brand New Start : Part 2. I will also name specific topics related to issues directly i.e. Lipedema, Lymphedema, Back Pain, and perhaps some other issues as they may (or may not) come up.
For years I have had issues with my legs and huge rear end. It all started about when I was 15, I noticed my legs were getting thicker, despite the fact that I was an avid jogger back then. The doctors and everyone else simply said it is because I am building up my calf muscles. I eventually started having trouble buying pants. My calves were large, my thighs were bigger and my ass was HUGE...and yet I had a smaller waist. This meant most of my pants were falling off my hips, tight on my legs, and not on my waist. Belts helped temporarily until I decided to wear pleated pants. They were a life saver to me, in 'normal' people when they wore them they appeared to have blousy trousers, for me they were 'just right'. I continued to live my life, and then my life slowly started to fall apart. I had a series of bad, abusive relationships. I did resort to food for comfort WHEN I had food, but that is another story.
After I had my first child, I started gaining weight almost exponentially, or at least it felt that way. I remember having a complete meltdown at my legs...just my legs...I cried and panicked when I was telling my family about how big they are getting. I was dismissed. My brother stated he has big legs too, and showed me his calves, but um... he is male and being a male, his makeup and structure is a little different than that of women. I accepted it, and became more and more self conscious of my appearance. I was slowly becoming more and more of a recluse, I just wasn't aware of it. YET
I moved away to go to school, just me and my little man (my son). We moved to a new city where I knew NO ONE. I gradually made friends, but while I was waiting, food was my friend. So I know I had a large part to play in my "becoming supersized" What I did not have control over was how large my ass and legs would become. Shorts were no longer an item I would allow in my closet or drawers. Dresses that did not go to my ankles were a flat out NONO. I did have a bathing suit and even though it was rarely used I reserved my bathing suit for when I went to a water park OUTSIDE of town or a sparsely populated beach where no one knew me, or if they could, at least they would not know me.
I hated and still hate looking at myself in the mirror and seeing what I DID to myself. I begged for help, with so many doctors. They put me on diets (and believe it or not, I did follow them. I tried diet pills and exercise and even resorted to only eating one meal a day). I tried EVERYTHING and my legs got bigger and I would only lose a small amount of weight overall. One of my docs said at the time "Well, you are healthy, perhaps you are meant to be this way" Physically I was fine. I would get awful pains in my lower legs from time to time, but I always had those as far back as I remember. Other doctors said they had no answers, and pretty much gave up, and in time I gave up too. When I was younger, I didn't have the blood pressure issues and bad back issues that are such an integral, albeit negative, part of my life right now. I did have back pain, but episodes were 'few and far between' and those related issues were mild compared to painful hell that is my life now. As time moved on, my weight became more and more of an issue. I had my daughter and during that pregnancy I had pregnancy induced hypertension. Although it was not as severe as when I was pregnant, it was something I would come to live with long after my littlest angel was born.
My daughter was only a year old when I decided to start working, I became my own boss. I owned and operated my own taxis. About six months in to my new business venture, a lady ran a red light in the wee hours of the morning (5AM), she had just come out from a coffee run to Tim Horton's and was late getting back to work. So instead of stopping she decided to charge through... and the rest is history!! I won't bore you with the details. Needless to say, I was in excruciating pain, pretty much bedridden (well couch ridden anyway)and I lost my precious car...I loved that car. I loved it more once I found out from the adjusters that car may have actually even saved my life due to being made with 'real metal'.
Whoa...I can really go off on a tangent there, can't I.... I always wondered why for years I thought my name was "Shut-up Danielle" I TALKED ALL THE TIME!!! Much to the annoyance of family, friends, teachers, and countless others. No wonder sometimes I don't get taken seriously. I mean really, I have valid issues, people just turn down their listening when I talk. Now that I am a mother and have children much like myself; I understand, I really do and I do make a concerted effort to listen to them, as I know the pain that is felt when you are ignored or yelled at simply for 'talking'. This is another topic and I must get back on track or you, my dear readers, will not finish reading my post.
This was all to set the stage for my upcoming post: A Brand New Start : Part 2. I will also name specific topics related to issues directly i.e. Lipedema, Lymphedema, Back Pain, and perhaps some other issues as they may (or may not) come up.
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