I am 40 years old now. It's not old, but it's not young either. I enjoy getting older because it means I'm still here. I'm still living...I'm learning...I'm spending more time with the ones I love.
I catch myself on a daily basis wondering why I can't do the things I did when I was 20 or 30 or even 35. It's because I'm not 20 or 30 or 35. I'm 40. My body feels every single one of those years and then some, but my mind still thinks I'm 20.
Each decade seems to add another volume to a series called 'Life'. In my story, I started with finding the love of my life and starting a family. This is the volume called 'My Twenties'. This decade was very fun and new and overwhelming. It was exciting to begin my life on my own being newly married. We had our first apartment, a one bedroom that was just perfect. We learned how to live together and respect each other and be understanding of our differences. We supported each other financially and emotionally. We created a lot of great memories of being poor and the mistakes we made. We took our time starting a family. I wanted to enjoy our time with each other before adding the stress of kids.
The last half of my twenties is when we started our family. Twins! The shock of that took awhile to get over. I couldn't have asked for more perfect babies to begin this stage of my life. I grew up as an only child, being raised around adults with no cousins near by. I had NO experience with babies, so having twins was scary to say the least. But...I managed. We both did the best we could. This stage of my life was my favorite by far for a lot of reasons. It's not because of the kids or Mike, it's because I feel that I was at my best back then. Sure I had the normal stresses of being a new mom and occasional bouts of depression, but looking back now, I was much healthier physically and emotionally then. I was having fun with my new little family, just living and enjoying myself.
Now onto Volume 2 of 'Life'. My thirties...the decline. I had Sydney when I was 29, so I consider her a part of this volume. My pregnancy with her is what began this decline. No fault of hers. I was over 300 lbs when I got pregnant so it brought on and escalated a lot of new or underlying medical problems. Some I didn't know I had until recently.When she was born, she was a very needy and inconsolable baby. The baby stage has never been my favorite, so having a difficult baby made it hard for me to bond. After we fixed a formula problem, she calmed down. This helped me grow closer to our new little girl. I loved being a mom. I loved that I had the the luxury of staying at home and watching them grow, teaching them how to do things and watching them discover and explore.
This is also the decade where I added the church to my life. In many ways it brought on some great things, but in others ways it added on a great deal of stress. I love the social part of church, but everything else...not so much. It added on an uncomfortable feeling that never went away. I have never been one who likes being confined by rules or expectations. I am a free spirit, one who speaks her mind and is very skeptical about things that seem far fetched. To be honest, I still wonder why I converted. The main thing that drew me into the church was the love of family atmosphere and the good standards they teach the kids. The gospel part never really took hold of me. At times it peaked my interest and I paid attention, but my skepticism always won over.
The decline wasn't fully felt until the later part of my thirties. There are many factors that created a lot of self doubt, overwhelmed periods, feelings of inadequacy, moments of frustration. As a mom, we are judged by everyone we encounter. We are being judged by how well we treat our kids, how well they behave, what their abilities are. Are they smart? Are they kind? We are judged ourselves. How well do we function? How much can we take on our plate and not fail? Do we look like a deadbeat mommy or is our makeup on and hair brushed? It's a lot of pressure and exhausting feeling like you live under a microscope.
It doesn't help that I am a SUPER sensitive person. So this judgement that I speak of, whether it's in my head or not, affects me a great deal.
Being a member of the LDS faith, made my feelings of inadequacy feel even greater. Not by anyone within. This group of individuals couldn't be any kinder or loving to everyone they encounter. It's my own desire to be like them that made me doubt myself and my own abilities as a mom, a wife, a woman. So, here I am, a new mom, a somewhat new wife, a woman with no experience raising kids or even watching kids grow up and NOW a member of this church surrounded by these fabulous moms and dads that have it all together. Talk about feeling inadequate. Yes, I know it's ALL in my head. But, it was a real issue for me regardless. What's funny is, I have become very close with a lot of these moms and dads and in many cases they have the same out of control experiences, unruly kids, bouts of self doubt, struggles with their own bad habits as I do. They are just as real as I am.
Because of this, deciding to leave the church has created a lot of back and forth debates in my head in order to be comfortable with my decision even though I have wanted to for a long time. I can no longer rely on the love of it in a social aspect to justify me going. I have tried to believe in the teachings and history of it, but I just don't. I wish I did. The mind wars I have been through over this has caused me a great deal of stress, feelings of guilt and letting those I love down. But, the feeling of getting the old Jill back I have felt since making this decision has turned back on a light that has been fading over the years. I don't feel like I have to exist in this pretty package of having my life together.
My thirties...a decade of learning. A decade of stress. A decade of one health problem after another. A decade of being a mom in constant fear of screwing these kids up. A fantastic decade of raising great kids, watching them grow. A fantastic decade of making great lifelong friendships. Also a decade I am happy to be done with.
Now onto Volume 3...my forties. Oh crap! Now what??
The feeling of being lost. What is my purpose? My kids are growing up and their needs are different. How do I Mother now? I am a woman in a forty year old body with a 24 year old mother of newborn's mind. Is there an upgrade button on my head somewhere that I can push to accelerate my brain to function in this older body??
One thing nice about getting older is the 'give a damn' emotion is fading. That is why I can finally be okay with making decisions that could put me in a bad light. I don't like being seen in a negative way, so I run from decisions that put me there. The fading 'give a damn' is also helpful in being comfortable in my own skin. I have removed myself from one area where I feel constantly judged and that has been very freeing. Now the next step is freeing myself from my own judgement. I frequently want to be like I was in my twenties. Why?? Because...that's when I felt my best. Problem is...my body has different plans. I'm struggling to accept that. I am still searching for that magic pill to fix all my health problems. It's much more comfortable to live in a fantasy world than to face the reality that I have a lot of hard work ahead of me to feel normal again.
I guess the point of this post is basically to purge my thoughts. I have been unhappy with a lot of things for awhile. I've known the source of many of these problems but have been afraid to admit them and take action. Fear of reaction. Curse of being a people pleaser. I am frustrated with how much my body has deteriorated of the past few years and has limited me tremendously with how much and what I can do. It takes me a lot longer to do simple tasks and I have to rest a lot. I am just trying to find comfort in this aging skin. I am recognizing that stress plays a great deal in how well the body performs. I am being patient with this stage and taking measures to eliminate stressors. This will help the healing and rebuilding of my body and mind. I will get back to the Jill I know is in there. It won't be with a 20 year old body. But, it will be in a better body, one made with hard work. Along with a mind that has grown to work well with it.
I'm looking forward to writing this current volume of 'Life'. I'm looking forward to watching my kids enter adulthood and feel my relationship with each of them change and grow stronger. I am looking forward to being sought out for love and help as they find their paths in life. I'm looking forward to another decade with my soulmate and love of my life. And, finally I am looking forward to creating a better me.
Thursday, November 9, 2017
Monday, August 28, 2017
No surgery for now.
Just when I thought I had things figured out and a plan in action...I get hit with a curve ball. Lovely.
Time to readjust. Time to rethink. Time to figure out a different plan.
Back in the beginning of 2016, I went to the ER because I was unusually short of breath. After multiple tests, it was discovered that I had 2 blood clots in my lungs. They weren't in areas that were too obstructive, but still dangerous. I was put on blood thinners and within 6 months they had dissolved.
Since then I have been to a variety of different doctors for some reason or another. I've seen a Cardiologist to make sure my heart is ok. Thankfully it is. I've seen an Endocrinologist because of the Adenoma (benign tumor) that was discovered on my Adrenal Gland. So far the tumor has not changed and doesn't seem to be causing any problems, all the blood work done to check my hormone levels came back normal. I've had multiple ultrasounds done on my legs due to circulation concerns and the blood clot worry whenever I fall and get gnarly bruises from it. This was all in 2016. By the end of 2016, things started to calm down.
2017 comes along. My whole family got hit hard with one thing or another. Sydney got pneumonia, Colby got strep and the flu, Mike got bronchitis and sinusitis and the flu, I got a bad cold, Brett somehow managed to get missed this go around. This was all in January and February. One thing good that came of this was Mike was finally given the green light to get surgery on his nose to fix a lifelong battle with sinus infections. So far, so good.
After dealing with all that, it was my turn to get all the medical attention again. 😒 I threw out my back, was referred to a Physical Therapist who then referred me to a Lymphedema Specialist and was then diagnosed with Lipolymphedma. Since that diagnosis, I have been dealing with different methods to control it, without much success. I had finally made the hard decision to get surgery done to get rid of the stubborn, diseased fat that is preventing me from losing weight and getting back to a more functioning body. My path seemed clear and my future looked bright. I was terrified for sure, but also excited to see what could become of my body once these surgeries were done. Things were looking good and I was happy with my decision.
Well...
So much for that plan. 😞My body had another wrench to throw in.
On Saturday morning, I woke up, went to the bathroom, walked to the living room and I felt like I had just climbed a mountain or ran a marathon. I thought to myself 'this isn't normal'. I waited it out a bit, due to my size and problems with my legs I expect to get winded, so I don't like to make a big deal over nothing. I told Mike how I was feeling and after that we both were paying close attention to how I was acting all morning and afternoon. Is it nothing? Is it blood clots again? I knew that how I was feeling was very familiar to what I felt last time I had clots, but still I didn't want to jump to conclusions. We finally decided to go to the ER just to be safe. And, of course, when I get there, I feel completely normal. I almost told Mike to just take us back home...I even started walking back to the van. But...I didn't want to explain to my mom that I decided it was nothing and then went home. Knowing that look of worry that she would have had on her face was enough to keep me there. So...I stayed.
Several hours pass by, several pokes in my arms, a chest x-ray, a chest CT scan and an ultrasound on my legs were all done. Lo and behold...Blood Clots! I was right. This time it is 3 clots. They admit me into the hospital because it is my second occurrence with clots and they want me on a blood thinner active immediately. I spend 2 days in the hospital getting blood drawn every few hours to gauge the dose of medicine I need to keep my blood at the right consistency to prevent further clotting. They don't know where the clots are coming from. The ultrasound on my legs was inconclusive due to my body mass and not being able to get a good enough picture. I saw a Hematologist to find out if I had a blood disorder. All of my blood work from him came back normal, so no blood disorders. Which is good news. But...we still have that question of why am I getting these blood clots?? The Hematologist has put me on blood thinners indefinitely because of my history, so no matter what the cause, the treatment will be the same. Blood thinners. I really have no need to see that doctor again.
So...that leaves us with the question of "What about the Lipedema Liposuction? Can I still get it?"
I called the doctor in California and explained everything that is going on and he was still fine with doing the surgeries. He explained that there is a "bridge" method that he'll use to control the blood thinner before, during and after the surgery until I'm good enough to continue with my normal medication. This is good news because I still have that option available to fix that problem after I fix my current problem.
So now, my mind is all over the place...again. The risks. Are the risks worth the surgery? Blood clots are NO joke. I have been lucky twice and have not had severe problems or worse due to this. Even before finding out I have clots again, I questioned the surgery. Will it be successful? Will it cause more problems or new problems? Is it really necessary or is it a "plastic surgeon" wanting more money in his pocket? I've lost weight in the past, can I do it again? The anxiety I get just from thinking about it is driving me nuts. I worry about the plane rides back and forth...I'll need 2 seats to fit comfortably. How embarrassing is that. I worry about the actual surgery because I'll be awake during it and I know I'll be in panic mode the whole time. Especially because of my sleep apnea and how hard it is to breathe in certain positions. They said that I'll be in a heavier sedation because of that, but it still terrifies me. I'm just tired of thinking about it.
Today, I was given a blow that made my decision much easier to make. When I first began planning the surgery I was under the impression that it was a certain dollar amount for ALL the surgeries (I need 3 total). It was a steep number but still doable. Insurance does not cover it. Well, I misunderstood what they quoted and found out today that the 'steep' number is for EACH surgery. I know that Mike would do anything he could to make this happen. But, I don't want him to. Not right now. The amount I originally thought was hard enough to accept, but now that it's 3 times that amount, I can't in good conscious, spend that much money until I can get my act together. What I mean by that is...I am not blind to the fact that if I don't change my lifestyle, the surgeries will be a waste. If I don't eat healthy after the surgeries, all that fat will accumulate all over again. And, maybe worse because of how my body might react after having surgery. Bottom line...I have to grow up and follow through with changing my eating habits for good. I have been whining and complaining about the same thing for a lot of years. "I hate being fat." It's the same sob story. I know this. As an outsider looking into my life it must be very frustrating listening to the same thing over and over. Watching me attempt and fail over and over again. Trust me...I'm frustrated with this process too. But...food has that much pull over me. And, I have to figure out how to break the cycle before I allow Mike to spend that much money on what would be a temporary fix if I don't change.
I wish I understood why. I am just hoping that I can figure this out and learn to push myself and follow through with this once and for all. Less talk and more action. I can preach and go on and on about what I should do...now I just need to practice what I preach. It's time to see what I'm really capable of. 💪
Time to readjust. Time to rethink. Time to figure out a different plan.
Back in the beginning of 2016, I went to the ER because I was unusually short of breath. After multiple tests, it was discovered that I had 2 blood clots in my lungs. They weren't in areas that were too obstructive, but still dangerous. I was put on blood thinners and within 6 months they had dissolved.
Since then I have been to a variety of different doctors for some reason or another. I've seen a Cardiologist to make sure my heart is ok. Thankfully it is. I've seen an Endocrinologist because of the Adenoma (benign tumor) that was discovered on my Adrenal Gland. So far the tumor has not changed and doesn't seem to be causing any problems, all the blood work done to check my hormone levels came back normal. I've had multiple ultrasounds done on my legs due to circulation concerns and the blood clot worry whenever I fall and get gnarly bruises from it. This was all in 2016. By the end of 2016, things started to calm down.
2017 comes along. My whole family got hit hard with one thing or another. Sydney got pneumonia, Colby got strep and the flu, Mike got bronchitis and sinusitis and the flu, I got a bad cold, Brett somehow managed to get missed this go around. This was all in January and February. One thing good that came of this was Mike was finally given the green light to get surgery on his nose to fix a lifelong battle with sinus infections. So far, so good.
After dealing with all that, it was my turn to get all the medical attention again. 😒 I threw out my back, was referred to a Physical Therapist who then referred me to a Lymphedema Specialist and was then diagnosed with Lipolymphedma. Since that diagnosis, I have been dealing with different methods to control it, without much success. I had finally made the hard decision to get surgery done to get rid of the stubborn, diseased fat that is preventing me from losing weight and getting back to a more functioning body. My path seemed clear and my future looked bright. I was terrified for sure, but also excited to see what could become of my body once these surgeries were done. Things were looking good and I was happy with my decision.
Well...
So much for that plan. 😞My body had another wrench to throw in.
On Saturday morning, I woke up, went to the bathroom, walked to the living room and I felt like I had just climbed a mountain or ran a marathon. I thought to myself 'this isn't normal'. I waited it out a bit, due to my size and problems with my legs I expect to get winded, so I don't like to make a big deal over nothing. I told Mike how I was feeling and after that we both were paying close attention to how I was acting all morning and afternoon. Is it nothing? Is it blood clots again? I knew that how I was feeling was very familiar to what I felt last time I had clots, but still I didn't want to jump to conclusions. We finally decided to go to the ER just to be safe. And, of course, when I get there, I feel completely normal. I almost told Mike to just take us back home...I even started walking back to the van. But...I didn't want to explain to my mom that I decided it was nothing and then went home. Knowing that look of worry that she would have had on her face was enough to keep me there. So...I stayed.
Several hours pass by, several pokes in my arms, a chest x-ray, a chest CT scan and an ultrasound on my legs were all done. Lo and behold...Blood Clots! I was right. This time it is 3 clots. They admit me into the hospital because it is my second occurrence with clots and they want me on a blood thinner active immediately. I spend 2 days in the hospital getting blood drawn every few hours to gauge the dose of medicine I need to keep my blood at the right consistency to prevent further clotting. They don't know where the clots are coming from. The ultrasound on my legs was inconclusive due to my body mass and not being able to get a good enough picture. I saw a Hematologist to find out if I had a blood disorder. All of my blood work from him came back normal, so no blood disorders. Which is good news. But...we still have that question of why am I getting these blood clots?? The Hematologist has put me on blood thinners indefinitely because of my history, so no matter what the cause, the treatment will be the same. Blood thinners. I really have no need to see that doctor again.
So...that leaves us with the question of "What about the Lipedema Liposuction? Can I still get it?"
I called the doctor in California and explained everything that is going on and he was still fine with doing the surgeries. He explained that there is a "bridge" method that he'll use to control the blood thinner before, during and after the surgery until I'm good enough to continue with my normal medication. This is good news because I still have that option available to fix that problem after I fix my current problem.
So now, my mind is all over the place...again. The risks. Are the risks worth the surgery? Blood clots are NO joke. I have been lucky twice and have not had severe problems or worse due to this. Even before finding out I have clots again, I questioned the surgery. Will it be successful? Will it cause more problems or new problems? Is it really necessary or is it a "plastic surgeon" wanting more money in his pocket? I've lost weight in the past, can I do it again? The anxiety I get just from thinking about it is driving me nuts. I worry about the plane rides back and forth...I'll need 2 seats to fit comfortably. How embarrassing is that. I worry about the actual surgery because I'll be awake during it and I know I'll be in panic mode the whole time. Especially because of my sleep apnea and how hard it is to breathe in certain positions. They said that I'll be in a heavier sedation because of that, but it still terrifies me. I'm just tired of thinking about it.
Today, I was given a blow that made my decision much easier to make. When I first began planning the surgery I was under the impression that it was a certain dollar amount for ALL the surgeries (I need 3 total). It was a steep number but still doable. Insurance does not cover it. Well, I misunderstood what they quoted and found out today that the 'steep' number is for EACH surgery. I know that Mike would do anything he could to make this happen. But, I don't want him to. Not right now. The amount I originally thought was hard enough to accept, but now that it's 3 times that amount, I can't in good conscious, spend that much money until I can get my act together. What I mean by that is...I am not blind to the fact that if I don't change my lifestyle, the surgeries will be a waste. If I don't eat healthy after the surgeries, all that fat will accumulate all over again. And, maybe worse because of how my body might react after having surgery. Bottom line...I have to grow up and follow through with changing my eating habits for good. I have been whining and complaining about the same thing for a lot of years. "I hate being fat." It's the same sob story. I know this. As an outsider looking into my life it must be very frustrating listening to the same thing over and over. Watching me attempt and fail over and over again. Trust me...I'm frustrated with this process too. But...food has that much pull over me. And, I have to figure out how to break the cycle before I allow Mike to spend that much money on what would be a temporary fix if I don't change.
I wish I understood why. I am just hoping that I can figure this out and learn to push myself and follow through with this once and for all. Less talk and more action. I can preach and go on and on about what I should do...now I just need to practice what I preach. It's time to see what I'm really capable of. 💪
Thursday, July 27, 2017
Lipedema Liposuction...my next step.
Emotional roller coaster is an understatement.
Feeling sorry for myself and crying uncontrollably. Feeling angry and frustrated at my situation. Feeling empowered and ready to tackle this head on. All these emotions continuously flood through me. Sometimes all of them in one day.
I couldn't be more relieved that I found a diagnosis to my water retention nightmare. But, let me just tell you, this diagnosis has uncovered a whole new overwhelming feeling of helplessness. At first, things were great, I was seeing results and things were looking good. But now, I'm at a stand still and I am worried about the future.
In March, when the treatment started it was so exciting! I would go to the therapist and she'd do the MLD massage (Manual Lymph Drainage) and then wrap my leg(s). Since, I was so filled up with fluid, we saw results right away. And I felt the difference from the release of pressure right away. I thought I was on top of the world and found the answer to my problems. In some sense I did, but little did I know, it was way more complex than that.
After working with me for awhile, my diagnosis went from Lymphedema, which is water retention to Lipedema, which is a fat storing disease also known as "Painful Fat Disease". Sounds great, right? Well...that title is spot on. "Painful" in all definitions of the word...emotionally and physically. But...it doesn't stop there. I, not only have Lipedema, I have Lymphedema too. Double whammy! What I have is called Lipolymphedema.
Lipedema is a disease that processes fat abnormally and stores it primarily in the legs, hips and butt close to the surface. It creates scar tissue and causes inflammation and could turn into fibrosis. This is how I understand it. It causes what the doctor explains as congestion within the body affecting different functions, and that is how my Lymphedema set in. I have water retention on top of the stored diseased fat. My skin is super sensitive to pressure, I feel arthritic a lot and I bruise extremely easily. And, to top it all off, diet and exercise are not effective in getting rid of it. It is a chronic and progressive disease, so I will continue to build up more diseased fat. If I eat like crap, that will escalate the progression. From what I have read about this disease, it started when I hit puberty, so my poor diet on top of this has lead me to where I am today. IF I would've had a healthy diet, it probably wouldn't be so bad, but it would still be a problem.
All of the methods of treatment that I've done are used as a preventatives to help keep new development of fat and fluid from forming. It doesn't address what's already there.
When I think about that, it depresses me, it infuriates me and it scares me. I am 450 lbs! I know that not all of it is the fault of this disease, but I have gained the weight regardless and to think that it is there to stay, is terrifying. I am getting more and more immobile and weak. Doing basic chores and activities is such a challenge. I have had to resort to riding a scooter to be able to tolerate amusement parks and even grocery shopping. I SWORE I would never be one of those people that rides one of those things because they are too fat to walk. Sorry to be so blunt, but that's how I feel.
Here's what I have gone through so far...
MLD massage and wrapping. This SUCKED! The massage was nice, but the wrapping was uncomfortable, hot and would not stay put. It started to fall down the minute I took the first step. I had to get huge velcro shoes just to be able to walk outside and drive. We would switch off how much we wrapped, sometimes it was to the knee on both legs, sometimes to the thigh on one leg, sometimes a mixture of both. Mike learned how to do all of this and was my in home nurse massaging and rewrapping almost daily. The end result was that it helped my lower legs and slightly above my knees. It did not address my upper thighs, hips or butt. And, to add insult to injury, the wrapping introduced two new problems because of the fact that I walked funny when I had them on. There was a spot in my upper left thigh that would twinge and feel like a pinch nerve that became a constant nuisance. It hurt when I walked, stood a certain way or lifted anything. And , I pulled my right achilles tendon. Which made it even harder to move around.
After getting discharged from the therapist, we started using the massaging machine. This is just another form of massage to stimulate the lymphatic system. This process was much more involved and time consuming. Mike didn't have to massage me anymore, but he had to hook me up to this machine twice a day and rewrap me twice a day. Needless to say our lives and plans revolved around this new routine. The guilt I felt and feel because of this problem I have is unbearable at times. I've tried to stay positive, but the results I've seen and felt are very disappointing to say the least even after doing everything we're supposed to. In fact, the machine has caused more discomfort than relief. Because the wraps can only go up so far, my hips and butt get NO compression. And, those are my worst areas of congestion. So, it feels as though the machine and wraps just push up the fluid to that area making it feel even more full of pressure, heavy and hard to move.
One thing that I was hoping would be my saving grace to really get control of the constant fluctuation of fluid was the custom compression garment we had made for me to wear everyday. It was $1100 for one pair (two pair were ordered by mistake making us think it was $2200 for one pair). My therapist misunderstood my direction to call me with a price before ordering, so we had to suck it up and pay. I was dreading and excited for this garment to arrive. When they arrived, I pulled them out of the bag and opened them up and about fell over in shock by how small and short they looked. I thought for sure they were made wrong. But...I knew they were designed to be tight in order to have the compression, so we attempted to put them on. The first attempt was hilarious. Mike was using all his strength and I was bending and squatting any way I could to try to get this sucker up. We finally gave up and put them aside. Mike YouTube'd different videos with tutorials on how to put them on and what kinds of tools are out there to help. We drove an hour away to a store that carried the specific tools recommended to help him help me put these support hose on. The next day we tried again with not much progress from the day before. The crotch part only got up as high as mid-thigh and the material around my ankle was very painful. Remember I have the "Painful Fat Disease" as well as water retention, so the pressure of these hose is sometimes too painful to tolerate. I wore them for awhile just to get some compression, but once I had to go to the bathroom, we had to do the whole process again. I couldn't just pull them up and down because the garment turned into a tourniquet around my leg when I pulled them down. It became more work and headache than helpful. But we still tried several more times in hopes of stretching it enough to make it easier. No such luck. I called the lady that I got them from and she contacted the rep for the manufacturer. We set up a meeting to remeasure me and see if there was a mistake. Sure enough, there were several measurements off, most noticeable being the length of my legs. Which would explain the crotch area only reaching my mid-thigh. The other measurements change throughout the day on a normal basis due to weather and activity, so those weren't a big deal, but still adjusted. The hose were then reordered and I have received them. My legs got very full and tender from our trip in June, so I've had to give them time to slim down by doing the wraps a little. But, that has shown little improvement. In fact, it flared up my aggravated thigh muscle and ankle pain again, so I had to pick the lesser of two evils. Right now, I am doing none of the therapies to help with the retention. Some days are fine and some days are miserable. It is what it is.
There is one method that has always been a possibility, but not one that I wanted to jump on board with immediately. I wanted to try all these other methods first. And that method is... Lipedema Liposuction. This is surgery that will address the diseased fat and suck it out in order to bring my body back to a stage that isn't so advanced and will help me regain mobility, help me lose weight and then be in a better place to maintain and slow down progression. It will never be cured and I will have to really be mindful of how I take care of myself from now on. But, it will help me get a better handle on the disease.
Since this disease isn't diagnosed often because it is seen as obesity only, there are only a few doctors that are specialized in this unique type of liposuction. One is in California and 2 are in St. Louis. Mike, my mom and I have already had a phone consult with the one in California. He has 20 years experience and I have read a lot great reviews about him and watched several videos. I have a good feeling about this doctor. I've tried to reach out to the St. Louis doctor with very little success (not impressed with the run around I've been given with their office). The third doctor didn't impress me at all in any way.
During the consult with the California doctor, he addressed the treatment plan he has for me, in addition to further explanation about the disease and some details about himself. It was a very informative consult and he was very personable. Before our consult, I had to send him pictures and fill out a questionnaire so he could see what he'd be dealing with. He said I was Stage 4 in my hips and butt, an advanced Stage 3 in my thighs and knees and a normal Stage 3 in my lower legs and upper arms. His treatments plan would be to do 3 surgeries a month apart from each other. The first would be my hips/butt, the second would be my calves/ankles/upper arms and the third would be my knees/thighs. He uses three/four types of tools, one specifically designed to address the diseased fat. It shoots water into the problemed areas to break it up then it's sucked out. The other tools are to help with the "blending". I will not be under general anesthesia, it will be local anesthesia. And because of my other medical problems, an anesthesiologist will be monitoring me very closely and I'll be under greater sedation. The doctor wants his patients alert so he can position them better for better results. I will also be monitored overnight after each surgery and have follow up visits for 5 days after.
We will be traveling back and forth each time and staying in California a week at a time. It's a scary decision to do this, but I am so tired of dealing with this and feeling more and more dependent on everyone. I want my mobility back! I know this isn't the fix all solution and I have a lot of work to do to not let it get so out of control again. But, that's ok, I can handle that.
We will be scheduling my first surgery soon. We're looking at October to get the process started. I am extremely nervous to do this, but I feel it's the best method to get control of my body again.
Feeling sorry for myself and crying uncontrollably. Feeling angry and frustrated at my situation. Feeling empowered and ready to tackle this head on. All these emotions continuously flood through me. Sometimes all of them in one day.
I couldn't be more relieved that I found a diagnosis to my water retention nightmare. But, let me just tell you, this diagnosis has uncovered a whole new overwhelming feeling of helplessness. At first, things were great, I was seeing results and things were looking good. But now, I'm at a stand still and I am worried about the future.
In March, when the treatment started it was so exciting! I would go to the therapist and she'd do the MLD massage (Manual Lymph Drainage) and then wrap my leg(s). Since, I was so filled up with fluid, we saw results right away. And I felt the difference from the release of pressure right away. I thought I was on top of the world and found the answer to my problems. In some sense I did, but little did I know, it was way more complex than that.
After working with me for awhile, my diagnosis went from Lymphedema, which is water retention to Lipedema, which is a fat storing disease also known as "Painful Fat Disease". Sounds great, right? Well...that title is spot on. "Painful" in all definitions of the word...emotionally and physically. But...it doesn't stop there. I, not only have Lipedema, I have Lymphedema too. Double whammy! What I have is called Lipolymphedema.
Lipedema is a disease that processes fat abnormally and stores it primarily in the legs, hips and butt close to the surface. It creates scar tissue and causes inflammation and could turn into fibrosis. This is how I understand it. It causes what the doctor explains as congestion within the body affecting different functions, and that is how my Lymphedema set in. I have water retention on top of the stored diseased fat. My skin is super sensitive to pressure, I feel arthritic a lot and I bruise extremely easily. And, to top it all off, diet and exercise are not effective in getting rid of it. It is a chronic and progressive disease, so I will continue to build up more diseased fat. If I eat like crap, that will escalate the progression. From what I have read about this disease, it started when I hit puberty, so my poor diet on top of this has lead me to where I am today. IF I would've had a healthy diet, it probably wouldn't be so bad, but it would still be a problem.
All of the methods of treatment that I've done are used as a preventatives to help keep new development of fat and fluid from forming. It doesn't address what's already there.
When I think about that, it depresses me, it infuriates me and it scares me. I am 450 lbs! I know that not all of it is the fault of this disease, but I have gained the weight regardless and to think that it is there to stay, is terrifying. I am getting more and more immobile and weak. Doing basic chores and activities is such a challenge. I have had to resort to riding a scooter to be able to tolerate amusement parks and even grocery shopping. I SWORE I would never be one of those people that rides one of those things because they are too fat to walk. Sorry to be so blunt, but that's how I feel.
Here's what I have gone through so far...
MLD massage and wrapping. This SUCKED! The massage was nice, but the wrapping was uncomfortable, hot and would not stay put. It started to fall down the minute I took the first step. I had to get huge velcro shoes just to be able to walk outside and drive. We would switch off how much we wrapped, sometimes it was to the knee on both legs, sometimes to the thigh on one leg, sometimes a mixture of both. Mike learned how to do all of this and was my in home nurse massaging and rewrapping almost daily. The end result was that it helped my lower legs and slightly above my knees. It did not address my upper thighs, hips or butt. And, to add insult to injury, the wrapping introduced two new problems because of the fact that I walked funny when I had them on. There was a spot in my upper left thigh that would twinge and feel like a pinch nerve that became a constant nuisance. It hurt when I walked, stood a certain way or lifted anything. And , I pulled my right achilles tendon. Which made it even harder to move around.
After getting discharged from the therapist, we started using the massaging machine. This is just another form of massage to stimulate the lymphatic system. This process was much more involved and time consuming. Mike didn't have to massage me anymore, but he had to hook me up to this machine twice a day and rewrap me twice a day. Needless to say our lives and plans revolved around this new routine. The guilt I felt and feel because of this problem I have is unbearable at times. I've tried to stay positive, but the results I've seen and felt are very disappointing to say the least even after doing everything we're supposed to. In fact, the machine has caused more discomfort than relief. Because the wraps can only go up so far, my hips and butt get NO compression. And, those are my worst areas of congestion. So, it feels as though the machine and wraps just push up the fluid to that area making it feel even more full of pressure, heavy and hard to move.
One thing that I was hoping would be my saving grace to really get control of the constant fluctuation of fluid was the custom compression garment we had made for me to wear everyday. It was $1100 for one pair (two pair were ordered by mistake making us think it was $2200 for one pair). My therapist misunderstood my direction to call me with a price before ordering, so we had to suck it up and pay. I was dreading and excited for this garment to arrive. When they arrived, I pulled them out of the bag and opened them up and about fell over in shock by how small and short they looked. I thought for sure they were made wrong. But...I knew they were designed to be tight in order to have the compression, so we attempted to put them on. The first attempt was hilarious. Mike was using all his strength and I was bending and squatting any way I could to try to get this sucker up. We finally gave up and put them aside. Mike YouTube'd different videos with tutorials on how to put them on and what kinds of tools are out there to help. We drove an hour away to a store that carried the specific tools recommended to help him help me put these support hose on. The next day we tried again with not much progress from the day before. The crotch part only got up as high as mid-thigh and the material around my ankle was very painful. Remember I have the "Painful Fat Disease" as well as water retention, so the pressure of these hose is sometimes too painful to tolerate. I wore them for awhile just to get some compression, but once I had to go to the bathroom, we had to do the whole process again. I couldn't just pull them up and down because the garment turned into a tourniquet around my leg when I pulled them down. It became more work and headache than helpful. But we still tried several more times in hopes of stretching it enough to make it easier. No such luck. I called the lady that I got them from and she contacted the rep for the manufacturer. We set up a meeting to remeasure me and see if there was a mistake. Sure enough, there were several measurements off, most noticeable being the length of my legs. Which would explain the crotch area only reaching my mid-thigh. The other measurements change throughout the day on a normal basis due to weather and activity, so those weren't a big deal, but still adjusted. The hose were then reordered and I have received them. My legs got very full and tender from our trip in June, so I've had to give them time to slim down by doing the wraps a little. But, that has shown little improvement. In fact, it flared up my aggravated thigh muscle and ankle pain again, so I had to pick the lesser of two evils. Right now, I am doing none of the therapies to help with the retention. Some days are fine and some days are miserable. It is what it is.
There is one method that has always been a possibility, but not one that I wanted to jump on board with immediately. I wanted to try all these other methods first. And that method is... Lipedema Liposuction. This is surgery that will address the diseased fat and suck it out in order to bring my body back to a stage that isn't so advanced and will help me regain mobility, help me lose weight and then be in a better place to maintain and slow down progression. It will never be cured and I will have to really be mindful of how I take care of myself from now on. But, it will help me get a better handle on the disease.
Since this disease isn't diagnosed often because it is seen as obesity only, there are only a few doctors that are specialized in this unique type of liposuction. One is in California and 2 are in St. Louis. Mike, my mom and I have already had a phone consult with the one in California. He has 20 years experience and I have read a lot great reviews about him and watched several videos. I have a good feeling about this doctor. I've tried to reach out to the St. Louis doctor with very little success (not impressed with the run around I've been given with their office). The third doctor didn't impress me at all in any way.
During the consult with the California doctor, he addressed the treatment plan he has for me, in addition to further explanation about the disease and some details about himself. It was a very informative consult and he was very personable. Before our consult, I had to send him pictures and fill out a questionnaire so he could see what he'd be dealing with. He said I was Stage 4 in my hips and butt, an advanced Stage 3 in my thighs and knees and a normal Stage 3 in my lower legs and upper arms. His treatments plan would be to do 3 surgeries a month apart from each other. The first would be my hips/butt, the second would be my calves/ankles/upper arms and the third would be my knees/thighs. He uses three/four types of tools, one specifically designed to address the diseased fat. It shoots water into the problemed areas to break it up then it's sucked out. The other tools are to help with the "blending". I will not be under general anesthesia, it will be local anesthesia. And because of my other medical problems, an anesthesiologist will be monitoring me very closely and I'll be under greater sedation. The doctor wants his patients alert so he can position them better for better results. I will also be monitored overnight after each surgery and have follow up visits for 5 days after.
We will be traveling back and forth each time and staying in California a week at a time. It's a scary decision to do this, but I am so tired of dealing with this and feeling more and more dependent on everyone. I want my mobility back! I know this isn't the fix all solution and I have a lot of work to do to not let it get so out of control again. But, that's ok, I can handle that.
We will be scheduling my first surgery soon. We're looking at October to get the process started. I am extremely nervous to do this, but I feel it's the best method to get control of my body again.
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