My Emotions Dealing with the Lipedema Diagnosis

{I'm stage IV and severe}

It explained so much, more then you all can ever know and the funny thing is for years I told doctors and others who thought I was crazy, that I felt like a "big bag of water" and I do not think it is normal for fat people to have their entire lower body including their abdomen swell up huge just from sitting up!

One advantage of all the home care and nursing care and occupational therapy I got last year was therapists, nurses and others were seeing how I operated for hours, they weren't coming in and seeing me laying in bed with endless empty bags of fast food, the physical therapist would take me on walks and even NOTICED how my abdomen expanded in the short time he was with me. For years, I have laid in bed to "control water" and blamed it on my failing heart due to weight, but they noticed I was staying alive far longer then what congestive heart failure diagnosed in 1998 would do. I still have some congestive heart failure and other problems but the picture was far bigger.

Another thing,  this explained all the endless Leg Pain for years where just being touched on the legs hurt. I learned to tune out pain to survive mentally and otherwise, but pain is part of my reality that never lets up, my legs hurt all the time, and the more swollen they are, the worse the pain. It is always there.  Where each everyday there is an ache or an acute pain in my leg and even at times in the stomach area. Now I know why and that I was not being a hypochondriac, or anything like that, my pain was real and it grew worse the more I sat up, and more things I did, and this got harder to conquer the older I got.

I also understand that the "fat" is totally different in this condition and I have it in a severe form. My attempts to diet and exercise failing, is not a abnormal thing in severe lipedema conditions. So wonder none of it ever seemed to work. I had the scary thing recently of gaining a little bit of weight, I'm at 530 and I had been exercising FAR more these last few months.  if I had a normal body, I would not be gaining weight. Out of weight gain fears, I have given up some yogurt but that is the only thing left to be cut. Our food has been more reduced, it's the end of the month, and well things do get stripped down a bit food wise, and I feel it. I was very swollen the day I was weighed, had spent much of week sitting up and went to day conference, so hopefully that explains the "weight gain".

Emotionally this is some weird territory to be on. Part of me thinks if only they caught this when I was young, but my years of poverty and other problems, no one was listening. There is grief and regret there. Why did it take so long to get diagnosed and help? Even with my abusive parents, I think if only they had listened or believed me, I was complaining about feeling swollen very early on. Did the trauma of my poverty and other horrible things bring this on right before my 400lb weight gain? Well I had gained 100lbs within a year from age 12-13, why didn't anyone pay attention except to call me fat and lazy? Why was I always blamed for everything including my own health problems?

One odd thing recently too, is realizing the genetic scope of lipedema, where people who have it tell me it comes from at least one side of the family and while not everyone gets a diagnosis and there are differing levels of severity, in my case, no one had swollen legs or arms or the body shape I ended up with on either side of the family. This has brought some questions up regarding my origins. My mother's non-answer, I already posted about. Model thin-cousins, nieces and nephews and others, and one would naturally ask "How did this happen to me?" Part of me has been doing some serious thinking about the family I "never fit in" and how I ended up to be supposedly related to people I was nothing like. If your body does not match those you are related to or your personality, what would you think? I am exploring possibilities right now to get some answers. I will either find out I am really related to my haters or will end up being a Late Discovery Adoptee. One or the other.

This illness did bring me abuse, and censure. My body even as far as super fat people go, never looked normal, my weight distribution and shape was extreme. Now that I know what was really wrong, the years of abuse and put-downs for being this way are even more poignant. I confronted the narcissists with this but one sentence those types are allergic to is, "I am sorry". No recognition awaited me whatsoever and I know I will never have it.  For years I felt like the opposite of the book "Thinner" had happened to me. All the stuff about dieting was a joke as it never worked on me. Recently even exercising far more, I gained a little bit of weight. It gets scary, it really does.

A Center for Advanced Medicine in a huge metro city even ignored it, and well I'm planning a letter for those folks. How many have this illness only to be told they are "just fat" and they enter years of pain and misery because of fat prejudice? I have the old paper where they wrote about me having a huge incredible weight gain--I used pictures for proof, and the sentence appears, "patient most likely is lying about her food intake." Their arrogancy cost me more years of suffering.

I hope the detractors I encountered on this blog, who told me I was just fat and lazy too, are now schooled in reality.

I am looking forward to some of the treatment that awaits me including some flexitouch to take more fluids off. One therapist recently said to me, "You are not a quitter." I was happy to hear that from her. That is very true, I finally got my answers, Thank God!

Rare adipose disorders that masquerade as obesity

We don't Love you because you are fat!