Trying to stay positive...

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.