Saturday, February 6, 2010

Was it all just a dream?

More like a nightmare.

Yesterday in all of a 140 character Tweet I was told I most likely do not have lymphedema or lipedema, because both are “very rare” and are accompanied with other birth defects. I was told this by an obesity doctor.

Tweet: ppll believe that #genes are responsible for obesity. For the most part, #obesity genes come w on/off switches in response to bodys milieu

My Reply: I'm in the least part, my #obesity is from my #genes...#lipedema and #lymphedema @born2lbfat

Tweetback: probably not Sarah. those syndromes are very rare & present in early childhood, often accompanied by other birth defects.

My reply: Oh, I wish that were true...but I do have both, I'm a rare being. =) Pic of legs @born2lbfat

Tweetback: If that's so, hopefully your doctor is helping. I wish you well in your journey to health.

Then later: There are very few real obesity genes. The shape of your body & how fat distributes is genetic. Most other #obesity...

And again: Real #obesity #genes are present from birth, often accompanied by other birth defects.

And again: We have evolved into believing that cultural &familial #obesity is "#genetic". It isn't. The good news is, it can be healed.

What upsets me the most is this is coming from someone who makes a living “helping” obese patients. I’m not going to name names and call people out, I won’t tell someone they are wrong as quickly as I was. I was simply sharing my experience. From what I read, her MD is in Psychiatry. Her rational makes sense and I’m sure it applies to and helps many people. It’s true, not everyone is fat for the same reasons.

However, it’s bad enough that most doctors are not educated on lymphedema. So to have a doctor who touts themselves as an obesity doctor to not acknowledge the possibility of lymphedema contributing to obesity is just bothersome. At least in the combination of treatment the obese patient with lymphedema will need compression therapy for the affected limbs. Lipedema is rarer, so I am a bit more forgiving. But a quick heads up to ALL medical professionals when I person walks (if they can even walk) into your office with legs that look like this…something isn’t right.

You know for years I was told all my problems were just because I was fat and if I would just eat less I’d lose weight. Even when my legs were filling with fluid and in stages of elephantitis, I was told it was just my weight. When I was FINALLY diagnosed with lymphedema I had hope that with treatment I would one day be “normal”. I began aggressive compression treatment; I was tethered to a compression pump for 6-8 hours a day. My legs were compression wrapped in layers of foam, and bandages from my toes to my groin three days a week. I went to class and to work wrapped up like a mummy, because I had a desire to live a productive life no matter how much discomfort and pain I had to endure. I had gastric bypass surgery, because being closer to a normal weight is part of treating lymphedema, and I was aware that not ALL my weight came from lymph fluid, my poor eating habits did play a role.

About a year after surgery I moved to Miami and saw a lymph specialist. He asked me if my surgeon told me surgery would only help me lose weight above the waist. I replied “of course not”. So then he told me that I didn’t have primary lymphedema as previously diagnosed, I had primary lipedema with secondary lymphedema.

Woohoo, lucky me!!!

As I searched the internet for information (which btw I have NEVER read of lymphedema or lipedema being accompanied by other birth defects) I felt a bit of relief…the fat is not my fault, all my life I never ‘felt’ fat and this is answer, it’s not my fault. Then came the realization, if the fat is not my fault, then there isn’t much I can do to get rid of it either. There is no way to know what fat is from my poor eating habits, and which fat is from lipedema. I’ve made major changes to my eating habits, exercise more and am still fat and will be for life.

I don’t use lipedema as an excuse to just be fat. I want to be healthy, I want to lose more weight, and I work towards that every day. I have lost over 150lbs; I no longer have sleep apnea, or high blood pressure. I’ve never had diabetes. I am the “healthy” fat person…if you don’t count the DVT, TIA, and PFO (omg could that be my other birth defect?)

I agree I am a rare case. And there are many people who resign to thinking their obesity is genetic and they have no control over it. I do not agree, I DO have control over my life, I can control my health within reason, I have control over my weight, if I did not have control I would be over 500lbs again. However, with the lipedema I do not have limited control, and knowing that challenges me to do the most I can to “beat this” with the realization that I will never weigh 120lbs as the insurance charts state as my “normal” weight.

Not normal, but much better.

So as much as I wish the past 10 years of my life were not true, that I did not have lipedema and lymphedema: that the numerous doctors, physical and occupational therapists in two states were wrong about my life sentence of care, treatment, and maintenance of these conditions; that I didn’t endure years of compression therapy, nights of waking up in pain from wraps that slipped and became too tight, hospitalization for painful cellulitis, arguments with insurance companies to get the care I needed in order maintain my conditions.

If only a simple 140 character Tweet could erase all that…but only in my dreams.

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