A fight for recognition and diagnosis
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Since the SECOND puberty hit, I was hit with a hormone hurricane that never seemed to stop. And I knew that something unusual was happening to me that was not happening to the rest of everyone else. Nobody saw it, and nobody believed me years later once I was able to articulate concern. I look back thinking maybe it was the reason I had such a terrible time growing up. Maybe something else had a deathgrip on my emotions and body that made me hate it and everyone else. I seemed to be going through something nobody else was; I hated being a woman. I hated puberty. I still feel like if I never got hips and boobs, I'd be just dandy. The hips never seemed to stop growing, and you know what? They still aren't. It's a curse. I feel like I'm still in puberty. My acne also hasn't gone away in my mid 20s. Imagine you have a disease, but instead of just having a plain ol disease, the disease is spreading or growing endlessly on you until everyone can see it, and it looks bigger every year until you no longer have the will to attend family functions because of the embarrassment. Not even my face has been spared. For some reason, that too decided to become inflamed. Just weight-gain in general did this. And I'm not sure why; maybe that I'm so incredibly out of balance. Let me tell you what I've clinically discovered: I have acidosis, problems with lipids and cholesterol, my heart is at mild-moderate risk, I have almost no magnesium and vitamin D, my sodium-potassium ratio is imbalanced, I absolutely CAN NOT lose weight, and can't stop gaining, I have some insulin resistance, my kidneys are on overdrive getting rid of something, low estrogen, high testosterone, horrible PMS and the coveted PMDD, and the rare but delightful POST-mestrual disorder. So to sum, last month, I was PMSing in bed for 13 days. And to calculate accurately, thats approximately....17000 days of my life I can never get back.
What made me started deeply investigating my health 3 or 4 years ago was my inability to lose weight. Every doctor told me that every lab I got back was perfectly normal. I remember feeling extremely hypoglycemic (precursor symptom to diabetes) in the fucking endocrinologist's office. I couldn't even walk in the room. They were all very concerned and took my glucose levels. They said it was normal. NORMAL. And gave me orange juice. They said if I continue to feel like this in 10 minutes, they have to take me to the emergency room. Guess who didn't feel better after 10 minutes. And guess who was not brought to the emergency room. And guess who never got help for undiagnosed insulin resistance. MOI. That's why you can't fucking trust regular doctors.
To cut a long story in tenths, after many many ignorant doctors and eager PAs looking for something they had no idea existed, I finally diagnosed my fucking self. I had been scouring the interwebs for years, researching all possible conditions related to the inability to lose weight, deficiencies, allergies, inflammation, having big hips...Those of you who say it's easy to find, I give you a big middle finger, because not once did I think that it was solely a leg problem. I thought I just had a weight problem and my natural shape was pear-y. So after 4 years, for some odd reason, I decided to start slowly researching again, resolving to end the mystery of why I wasn't like everyone else and why I can go on the same diet with a friend and they see immediate results and I always saw nothing after months. So for the first time ever, the little miraculous word appeared on my screen. 'Lipedema.' I got the shivers. As I read, I had some kind of elation like I never had before. it was me. This is exactly what I have! Diet and exercise have no effect on me, and its a leg problem!!! My hips and legs have always been grossly disproportionate to the rest of me. I took this information and tucked it into a little corner of my heart. I had a plan. Without telling everyone, even my amazing boyfriend, I made an appointment with a vascular doctor at a very reputable medical facility. I made sure this time that this was the right kind of specialist, and was well-educated on lipedema. We spoke for a while, and her suspicions became evident. They were the same as mine. Sure enough, she gave me the diagnosis immediately upon seeing me. It was very clear that I had lipedema. I only wish this part came sooner. Not just 4 years ago, (which would have saved me a lot of tears, money, blood, and time), but the moment that puberty hit. I wish I never had a single bad thought about myself, and was diagnosed when I was 10 or 11. I would have cried, I would have felt the world unjust, but it would not compare to what I had already experienced. Instead of blaming myself, I would have blamed the forces of lipedema whom bestowed this unnecessary transition on me. It was a transition within a transition. I hope it ends one day, and I will be able to enjoy myself. Very fortunately, I have a great doctor who I trust more than most, and am on a great regimen. She WAS able to clearly detect the mild insulin resistance, the thyroid antibodies, deficiencies, and imbalances that nobody was able to detect before. It's so important to go to an integrative physician and do as much thorough testing as possible. It's been 2 months, so maybe sometime in the near future, I will see some results. So far, I have much less fatigue. It will take much time before my stubborn body changes its old ways and learns how to balance itself.
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