Be careful what you wish for. Knowledge is power. Ignorance is bliss. I am feeling all of these right now.
I have been searching for answers for a VERY long time and I have finally received them. And the info keeps coming. And it's getting more and more depressing the more I learn.
I have always had a feeling that besides the water retention, I was gaining weight much quicker than I should be. I hated saying that because I didn't want to be seen as someone that is in denial of their actions. I know I eat like crap and I eat a lot and I don't exercise...I'm not blind. But...I will gain 14 lbs in a week just like that and I have gained over 100 lbs in a year more than once. That is just...A LOT. I mean, seriously, I don't gorge or eat obscene amounts of food everyday. Sure, some weeks are better than others. But...really?! Is that normal??
I don't know...maybe I am blind to my own actions. But, I really don't think I am.
The last several weeks have been pretty exciting for me because my long search for answers has come to an end.
I have been diagnosed with Lipolymphedema. Initially, it was Lymphedema, but upon further examination and appointments, it has been changed to Lipedema with secondary Lymphedema. At first I thought the Lipedema diagnosis was just a different label because of the criteria I fall under...meaning, I'm not a cancer patient, the retention involves both legs, I bruise easily and I am sensitive to touch. Which all of that is true. But, what I didn't understand until this weekend was that Lipedema effects something totally different than Lymphedema.
"Lipedema is a chronic metabolic disorder of the fatty tissue, of unknown cause, and is marked by a bilateral and symmetrical swelling of the lower extremities, caused by extensive deposits of fatty tissue."
In other words...I have a nice 10 year long collection of fat from my hips down that is stubborn to move and has beat up my lymphatic system causing the Lymphedema to rear it's ugly head and add water to the collection. Yay me. 😩 Think of it like this... my lower body is a bank that will accept deposits but doesn't give out withdrawals.
Lipedema can affect any sized person, it's primarily seen in women and is believed to be associated with hormones or genetics. Which makes sense as to why it appeared when I was pregnant with Sydney...my hormones were all over the place. My diet certainly hasn't helped the condition, but it isn't the main factor. So my assumptions were accurate when I felt there was something else "helping" me gain weight.
Another thing I learned is that diet and exercise are not effective methods to get rid of the accumulated fatty tissue. Wonderful. Because of this, the patients that have Lipedema get discouraged with the lack of results that appear after trying to lose the weight the usual way. Which could lead to depression, becoming more sedentary and gaining more weight worsening the problem. That would be ME. 😖 Whenever I lose weight it is usually most noticeable in my upper body and I get frustrated when my legs aren't showing the results I want. Plus...the extra weight and lack of mobility in my lower body really wear on me. Try walking with your thighs tied together, that's what it's like for me. Or...strap about 3-4 jugs of water on your legs and go up stairs. IT SUCKS!!
The most frustrating part is that fact that not much is known about this disease because it's often seen as obesity and it's the patient's fault for their condition. It took TEN years of complaining and not being heard, yet I was still only diagnosed merely by a series of unrelated problems. I threw out my back, was referred to a Physical Therapist which happened to work alongside a Lymphedema specialist and after hearing my complaints suggested I see that specialist too. I met the right people finally. My doctor is very open minded and shows genuine concern for my health so he is on board for anything. However, his initial treatment, just like all the other doctors, was to address the obesity. Which, honestly, I can't get too upset about because that's exactly what stands out and it's hard to look past 400+ lbs of awesomeness. So...I guess it was a great thing that I threw out my back. Thank goodness for dirty toilets and showers!! Right?
Now...all of this medical explanation aside...how am I doing emotionally with all of this new news and much anticipated diagnosis?
I am a mess. I am feeling defeated. I am frustrated with the wraps and the little progress they're making. I am overwhelmed with the fact that this is a lifelong process. There is no cure. All of the fat that has accumulated over the years is going to be SO HARD to get rid of...IF it ever goes away. All of the hopes and dreams that I've had to have a normal sized body...to fit into normal sized spaces and be able to move like I used to, just seems out of reach now. I am getting a massaging machine and some customized support hose which will hopefully work better than these wraps.
After I started reading more about Lipedema, the flood of emotion came over me like a ton of bricks. I've had an emotional, ugly cry breakdown more than once. Poor Mike was like a deer in headlights, not knowing how to respond. All I need is just hugs at this point. I'm really trying to stay positive, but it's hard. And, I keep thinking how petty I am. There are people that are missing limbs or are paralyzed...or any of those other awful diseases and here I am upset about some extra fat that won't move. How petty. I just have a slew of different feelings and emotions.
I think what's most upsetting is the fact that I'm usually a quick healer and this is really going to be a test on my patience and determination. That's scary. I have to really keep myself from getting into a funk and having frequent pity parties. I have to just come to terms that it's going to take time but in the end it'll all be worth it.
Tuesday, May 9, 2017
Wednesday, April 26, 2017
Drowning In My Own Body
Water retention! UGH! My nightmare for over a decade!! For 10 years I've known that there was something else wrong with my body that the doctors weren't addressing or seeing. And, sure enough... Lymphedema. When I walk into any doctors office, the first thing they see is a morbidly obese woman. Understandably. However...please look past that and LISTEN TO ME!! Listen to me when I say...at every appointment...that my main issue, the main reason why I have such a hard time losing weight and getting motivated is the fact that my hips, butt and legs feel like BRICKS...blown up, tight, unflexible bags of cement. Try lugging that around everywhere. Try lifting those up stairs or into a car. I get it...I get that I am obese. I get that I need to lose weight. But...PLEASE help me when I tell you that this water retention is pissing me off! And quit popping me with water pills...they obviously aren't doing the trick.
When I got pregnant with Sydney, I was already over 300 lbs. Needless to say my health was a main concern. Everyone was worried about me and rightfully so. It was a MISERABLE pregnancy. I had all kinds of issues from the get go. During the first trimester, my whole body blew up with fluid. I couldn't even bend my knee back to sit on my leg on the couch (if you can visualize that). I felt like a blown up water balloon wobbling around like a penguin. It was so bad that when I scratched my leg it would ooze water. NO JOKE! It would come out like a steady flow to the point that we had to get a rag to stop it. And, I just recently found out that the oozing of water is called "Weeping" a sure sign of Lymphedema. So it started way back then. And, not only did I suffer from that my whole pregnancy, but I was also diagnosed with Sleep Apnea during the second trimester. So on top of being physically unable to move, I had to learn how to sleep with a stupid mask on my face. I HATE things on my face! I had anxiety trying to get used to that thing. My nose was always stuffed up, so I would breathe through my mouth most of the time. The mask covered my nose and mouth thankfully, but getting past the 'feeling of suffocating' was difficult. I asked my doctor for something to calm my nerves, but with being pregnant, the only thing he could suggest was taking Benedryl. Luckily that helped. From that point on, I had to sleep in a recliner. Which I ending up breaking down several of our reclining chairs in our sectional sofa during that time...those springs can only withstand a constant weight of over 300 lbs on the springs for so long. lol. Now...onto the third trimester...let's see what else I can get. How about...Gestational Diabetes?? Why not. I love a challenge. So, I dealt with that too. Poking my fingertips every couple of hours to check my blood sugar, eating a restricted diet for the rest of the time. I managed...barely. But, unfortunately that Gestational Diabetes turned into Type 2 Diabetes after Sydney was born. Yay me.
After I had Sydney, I expected my swelled up legs to go back to normal. Well, they didn't. I talked to my doctor and she gave me a water pill. Ok. We'll try that. Nothing. Other than peeing every 5 minutes. Years pass by...still nothing. A new doctor. Same complaint and pleading to help me get rid of this water retention. New pill?? Sure. Why not. Nothing. More peeing. By this point I am searching for anything that might give me some relief. Everything that helps ends up being temporary. Let me just tell you how much this affects my mood, my desire to do anything outside of the home. I am exhausted just thinking about walking around with these dead weights. It's so frustrating. 10 years. 10 years of this crap. I have missed out on so many things while my kids were little because it was so draining to move. Makes me mad!
But, I am pleased to say that I am FINALLY seeing a light at the end of the tunnel! By mistake actually. I was doing normal chores and I threw out my lower back. Earlier that week I had done a lot of housework that was hard on my back and it caught up with me. I was down for the count for quite a while. I went to my doctor and he directed me to start seeing a Physical Therapist. I went to see her and explained my issues and also told her about my water retention and how that makes it hard for me to get a good range of motion and be active. She asked if I had ever seen a Lymphedema specialist. 'Uhhh..no. What is that?' So, she sent in a request to my doctor for me to get a consult with one and he then signed off on it. Thankfully.
I went to see the Lymphedema specialist and we talked about everything that I have been going through for the past 10 years and she confirmed that I have had Lymphedema since my pregnancy with Sydney. She explained that we have lymph nodes in our body to help regulate and move fluid around to flush out waste and toxins and such. And, the lymph nodes in my groin area no longer function so that messes up my lymphatic system and therefore pools fluid in my lower body. There is no cure, there is only treatment to reduce the retention and redirect the flow to the functioning lymph nodes. That is what we're doing now.
The treatment that I am going through to flush out the fluid that has built up over the past 10 years is called wrapping. There is also a special massage that's done beforehand to stimulate the lymphatic system and open up the passageways and redirect the flow. It's trial and error right now. We're watching the progress and making adjustments as needed. Currently I have one leg wrapped thigh high and the other wrapped knee high. She doesn't want to overwhelm the working lymph nodes. I am already seeing a lot of progress, especially in my feet, ankles and lower legs. I am feeling the affects of it too. Which is SUPER exciting and tremendously helps my state of mind. Right now it's hard to address the areas above my lower thigh because of mobility, so a compression garment will be needed for that. There is also a special compression massaging device ($5000-$7000 😨) that we will be buying to use at home. This will cover my entire leg, hips, butt and trunk area. I put it on...an hour for each leg and side of the body. There are chambers within the device that inflate and deflate all up and down which creates a wave like movement to stimulate and flush fluid out. It's actually very relaxing and feels so good to feel things moving.
There is a lot of extra attention that is needed right now just to get my body to a level of focusing on only maintenance and keeping things as normal as possible. I will forever be in support hose to keep a constant compression on my lower body.
As tiresome and awkward and restricting as this is, I am still so grateful for it. I can't express enough how relieved I am to see and feel progress. I am so blessed to have the professionals available to treat my condition and thankful to have finally come across the individuals to look past the obese woman and address the problem. Not to mention a husband that has turned into my home nurse to take care of me during off hours. He is a saint...helping me with my Physical Therapy stretches and the massage and wrapping needed for my legs.
I am so excited to see what the each month will bring with the steady and forward progress I'm already experiencing. I'm getting my freedom back! No more drowning and being a prisoner in my own body.
When I got pregnant with Sydney, I was already over 300 lbs. Needless to say my health was a main concern. Everyone was worried about me and rightfully so. It was a MISERABLE pregnancy. I had all kinds of issues from the get go. During the first trimester, my whole body blew up with fluid. I couldn't even bend my knee back to sit on my leg on the couch (if you can visualize that). I felt like a blown up water balloon wobbling around like a penguin. It was so bad that when I scratched my leg it would ooze water. NO JOKE! It would come out like a steady flow to the point that we had to get a rag to stop it. And, I just recently found out that the oozing of water is called "Weeping" a sure sign of Lymphedema. So it started way back then. And, not only did I suffer from that my whole pregnancy, but I was also diagnosed with Sleep Apnea during the second trimester. So on top of being physically unable to move, I had to learn how to sleep with a stupid mask on my face. I HATE things on my face! I had anxiety trying to get used to that thing. My nose was always stuffed up, so I would breathe through my mouth most of the time. The mask covered my nose and mouth thankfully, but getting past the 'feeling of suffocating' was difficult. I asked my doctor for something to calm my nerves, but with being pregnant, the only thing he could suggest was taking Benedryl. Luckily that helped. From that point on, I had to sleep in a recliner. Which I ending up breaking down several of our reclining chairs in our sectional sofa during that time...those springs can only withstand a constant weight of over 300 lbs on the springs for so long. lol. Now...onto the third trimester...let's see what else I can get. How about...Gestational Diabetes?? Why not. I love a challenge. So, I dealt with that too. Poking my fingertips every couple of hours to check my blood sugar, eating a restricted diet for the rest of the time. I managed...barely. But, unfortunately that Gestational Diabetes turned into Type 2 Diabetes after Sydney was born. Yay me.
After I had Sydney, I expected my swelled up legs to go back to normal. Well, they didn't. I talked to my doctor and she gave me a water pill. Ok. We'll try that. Nothing. Other than peeing every 5 minutes. Years pass by...still nothing. A new doctor. Same complaint and pleading to help me get rid of this water retention. New pill?? Sure. Why not. Nothing. More peeing. By this point I am searching for anything that might give me some relief. Everything that helps ends up being temporary. Let me just tell you how much this affects my mood, my desire to do anything outside of the home. I am exhausted just thinking about walking around with these dead weights. It's so frustrating. 10 years. 10 years of this crap. I have missed out on so many things while my kids were little because it was so draining to move. Makes me mad!
But, I am pleased to say that I am FINALLY seeing a light at the end of the tunnel! By mistake actually. I was doing normal chores and I threw out my lower back. Earlier that week I had done a lot of housework that was hard on my back and it caught up with me. I was down for the count for quite a while. I went to my doctor and he directed me to start seeing a Physical Therapist. I went to see her and explained my issues and also told her about my water retention and how that makes it hard for me to get a good range of motion and be active. She asked if I had ever seen a Lymphedema specialist. 'Uhhh..no. What is that?' So, she sent in a request to my doctor for me to get a consult with one and he then signed off on it. Thankfully.
I went to see the Lymphedema specialist and we talked about everything that I have been going through for the past 10 years and she confirmed that I have had Lymphedema since my pregnancy with Sydney. She explained that we have lymph nodes in our body to help regulate and move fluid around to flush out waste and toxins and such. And, the lymph nodes in my groin area no longer function so that messes up my lymphatic system and therefore pools fluid in my lower body. There is no cure, there is only treatment to reduce the retention and redirect the flow to the functioning lymph nodes. That is what we're doing now.
There is a lot of extra attention that is needed right now just to get my body to a level of focusing on only maintenance and keeping things as normal as possible. I will forever be in support hose to keep a constant compression on my lower body.
As tiresome and awkward and restricting as this is, I am still so grateful for it. I can't express enough how relieved I am to see and feel progress. I am so blessed to have the professionals available to treat my condition and thankful to have finally come across the individuals to look past the obese woman and address the problem. Not to mention a husband that has turned into my home nurse to take care of me during off hours. He is a saint...helping me with my Physical Therapy stretches and the massage and wrapping needed for my legs.
I am so excited to see what the each month will bring with the steady and forward progress I'm already experiencing. I'm getting my freedom back! No more drowning and being a prisoner in my own body.
Sunday, March 19, 2017
The Life of a Fat Girl.
I have always been considered and looked at as a "fat girl". More specifically the "funny fat girl". Does it bother me? Yes. I always think this is the first thing people notice. As I've gotten older I feel like there is a spotlight on me when I enter the room or when I walk in front of people... a spotlight showcasing my fatness. I visualize and imagine the gasps of disgust. Luckily, I stay sane and get by with my sense of humor. I don't mind being the funny girl. I enjoy that a lot. I just would like the fat part to go away.
Life as a fat girl...well, it sucks. I don't know life differently though. And maybe that's why I haven't been able to be successful at losing weight permanently. Fear of the unknown. My sister in law once said, "Don't lose weight because then you won't be you." What she meant was, that's the only way she's ever known me. Well, it's the only way I've ever known me.
Growing up I was always bigger, not necessarily fat, but bigger. It was a label that I received at a young age and it stuck. Emotionally. So regardless of my weight, I considered myself bigger "fat". Poking fun at myself was a way to break the ice among new kids to help get it out there and move past the judgments. I beat them to it, so they couldn't get the satisfaction and laughs from making the hateful remarks themselves.
This is something that I have continued to do as an adult. I feel as though being the "Funny Fat Girl" is my identity, it's who I am. I can't visualize myself any other way. But, I desperately NEED to. I need to find a way to convince myself that it's OK to change. I will still be the same person inside even if I change the outside. But, it's hard to change routines that have been a part of my everyday lifestyle for so long. At least it is for any length of time. I've tried, over and over.
Over the past 10 years my health has been on the decline. I was diagnosed with Type 2 Diabetes and Sleep Apnea by the time I was 30 years old. I have lived in denial for about that long and have now reached a point where my body is breaking down. These past 2 years I have seen and felt the decline gain speed and introduce a variety of different issues that put my life at risk. I am worried. My family is worried, they look at me with concern and feelings of helplessness all the time. I hate it. I am my own worst enemy when it comes to changing my bad habits and taking care of myself.
It's has become unbearable. I am a prisoner in my own body. I am a prisoner in my own head.
I go through anxiety attacks daily stressing about different things that involve my size, weight and physical limitations. When I go anywhere my inner dialogue is always the same...'How far do I have to walk', 'How many times do I have to get out of the car', 'Will I fit where I am going', 'How far will I have to park', 'Is a car going to park too close to my door?', 'Will my legs get weighed down with water?', 'How often am I going to have to pee?'...the questioning is endless.
It has gotten to the point that I dread going anywhere because, not only do I know that I am going to be exhausted with minimal activity, but I have also exhausted myself mentally before even leaving my home. It's very frustrating. I hate it. I hate it. I hate it. Which is why I have become such a recluse.
The struggle that I face with dieting is that I hate restrictions but I need structure. I'm not quite sure how to make that work without pissing myself off. I haven't been able to. But...I have finally reached my breaking point. I CAN NOT live like this anymore. I am miserable E.V.E.R.Y.D.A.Y. in my body. I can't move. I can't do simple chores. I can't function like a normal person.
So...I am saying this now. A promise to me and a promise to my family.
My life as a "Fat Girl" is over! And, THAT'S no joke.
Tomorrow I start Physical Therapy to help gain strength again and I also start my Healthy Habits challenge. I have bought a Fitbit to help keep me moving. I start Nutrisystem next week, which will keep the think work out of dieting. I won't like the restrictions with food, but I'll LOVE the ease of not having to plan or count anything. It's a give and take right?? And, I need to see results quickly to keep me motivated. I have learned that I can't rely on myself to make smart decisions regarding my health. I am blessed to have a great support system and they frequently try to get involved to help in any way they can. I am the one that doesn't follow through or stay dedicated. But, that ends now.
Say Goodbye to "Funny Fat Girl" and Hello to the soon to be "Fat Free Funny Girl" or "Reduced Fat Funny Girl". Whichever suits your taste. :) The reduced fat may be more doable. lol. ;);)
I AM READY!!
Life as a fat girl...well, it sucks. I don't know life differently though. And maybe that's why I haven't been able to be successful at losing weight permanently. Fear of the unknown. My sister in law once said, "Don't lose weight because then you won't be you." What she meant was, that's the only way she's ever known me. Well, it's the only way I've ever known me.
Growing up I was always bigger, not necessarily fat, but bigger. It was a label that I received at a young age and it stuck. Emotionally. So regardless of my weight, I considered myself bigger "fat". Poking fun at myself was a way to break the ice among new kids to help get it out there and move past the judgments. I beat them to it, so they couldn't get the satisfaction and laughs from making the hateful remarks themselves.
This is something that I have continued to do as an adult. I feel as though being the "Funny Fat Girl" is my identity, it's who I am. I can't visualize myself any other way. But, I desperately NEED to. I need to find a way to convince myself that it's OK to change. I will still be the same person inside even if I change the outside. But, it's hard to change routines that have been a part of my everyday lifestyle for so long. At least it is for any length of time. I've tried, over and over.
Over the past 10 years my health has been on the decline. I was diagnosed with Type 2 Diabetes and Sleep Apnea by the time I was 30 years old. I have lived in denial for about that long and have now reached a point where my body is breaking down. These past 2 years I have seen and felt the decline gain speed and introduce a variety of different issues that put my life at risk. I am worried. My family is worried, they look at me with concern and feelings of helplessness all the time. I hate it. I am my own worst enemy when it comes to changing my bad habits and taking care of myself.
It's has become unbearable. I am a prisoner in my own body. I am a prisoner in my own head.
I go through anxiety attacks daily stressing about different things that involve my size, weight and physical limitations. When I go anywhere my inner dialogue is always the same...'How far do I have to walk', 'How many times do I have to get out of the car', 'Will I fit where I am going', 'How far will I have to park', 'Is a car going to park too close to my door?', 'Will my legs get weighed down with water?', 'How often am I going to have to pee?'...the questioning is endless.
It has gotten to the point that I dread going anywhere because, not only do I know that I am going to be exhausted with minimal activity, but I have also exhausted myself mentally before even leaving my home. It's very frustrating. I hate it. I hate it. I hate it. Which is why I have become such a recluse.
The struggle that I face with dieting is that I hate restrictions but I need structure. I'm not quite sure how to make that work without pissing myself off. I haven't been able to. But...I have finally reached my breaking point. I CAN NOT live like this anymore. I am miserable E.V.E.R.Y.D.A.Y. in my body. I can't move. I can't do simple chores. I can't function like a normal person.
So...I am saying this now. A promise to me and a promise to my family.
My life as a "Fat Girl" is over! And, THAT'S no joke.
Tomorrow I start Physical Therapy to help gain strength again and I also start my Healthy Habits challenge. I have bought a Fitbit to help keep me moving. I start Nutrisystem next week, which will keep the think work out of dieting. I won't like the restrictions with food, but I'll LOVE the ease of not having to plan or count anything. It's a give and take right?? And, I need to see results quickly to keep me motivated. I have learned that I can't rely on myself to make smart decisions regarding my health. I am blessed to have a great support system and they frequently try to get involved to help in any way they can. I am the one that doesn't follow through or stay dedicated. But, that ends now.
Say Goodbye to "Funny Fat Girl" and Hello to the soon to be "Fat Free Funny Girl" or "Reduced Fat Funny Girl". Whichever suits your taste. :) The reduced fat may be more doable. lol. ;);)
I AM READY!!
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