Amy's "Hidden" Medical Struggle

I’m writing this up in Word because it will take me a while, perhaps several sessions and weeks, to get this out. I feel more vulnerable doing this than I have with anything else. And I’m going to include pictures because it won’t make sense if I don’t and because I need people to know what this is. It is woefully overdue that this condition gets KNOWN.

https://drive.google.com/drive/folders/1Tdu7_gB5rQSb8_OpQGbas-V9Jo-sTFyo

Many of you who read my posts have noticed that my life has been challenging lately. I mean, in some areas, I’m living my best life ever, namely, my career, my family, and my romantic relationship. Those are enormous things to be able to say one is living well.

 

My health, however, has been going to shite the last few years, and I would be causing myself further damage if I didn’t talk about it. And I haven’t much, for a very long time, because I find this so embarrassing and challenging. Only a tiny handful of friends even know there’s anything wrong, let alone understand the complicated nature and how dangerous this is.

 

Let me start by explaining what I don’t have. I’m sure most people have heard of lymphedema – where people get swollen with lymph fluid. Lymphedema happens most frequently in pregnant women and those with sedentary lifestyles. It is what causes swollen feet and ankles – fluid buildup. I don’t have lymphedema as a primary diagnosis. More on that later.

 

I have something different, something POORLY NAMED because it confuses people.

 

I have Lipedema. LIPIDS = fats. Lipedema is a rare genetic condition (that almost none of my doctors even knew existed) that occurs almost exclusively in women. It is estimated that about 11% of women have it, but most never get this severe, and most doctors are in the dark, so most never figure it out. I only know it because my biodad’s sister Melissa messaged me on Facebook to tell me about it (she’d seen full-length photos of me) before she passed away due to cancer.

It is an inflammation, an unnatural but predictable way that fat gathers in excess in certain parts of the body – whatever parts are affected in that person. It is most commonly in the legs, from the hips to the ankles and upper arms. It can occur only on one side of the body, too. I have it symmetrically (well, worse on the right side), all the way from hips down to the ankles (the ankles look like “cuffs,” and then my feet are unaffected and not swollen at all; yes, it’s weird). My upper arms are beginning to have symptoms (tenderness, bruising easily, etc.).

 

Lipedema is progressive and is largely incurable. Meaning my lower half has grown and will continue to grow for LIFE. Lipedema is linked to higher depression and suicide rates because we’re just told we’re fat. I have a significantly disproportionate body because of Lipedema. I have a considerably smaller upper half than my lower half, so I wear nothing but flowy, ankle- to floor-length skirts and dresses now. The last time I wore jeans, I walked by a couple of men outside doing landscaping and they “oinked” and laughed at me, I kid you not. I came home and got rid of all the pants I owned. Some people think of self-love as “I’m gonna wear whatever I want to, don’t give a rip what you think,” but I’m much too sensitive, so MY self-love was to say, “I’m not going to put you in harm’s way again” to my heart… and stop wearing jeans.

 

Lipedema has stolen A LOT from me. I love jeans, for one. And boots. Even at my very thinnest, I could only wear Torrid super plus calf boots because they ran more generously than any other brand I found. I had quite a collection. As I watched my body grow, I eventually couldn’t wear any of them, not even short booties. I donated 26 pairs of boots and booties, and I cried for a few weeks wrapped around that event. And now, with the Lipedema so far along, I have only found one brand and style of shoe that fits my feet and my leg brace.

 

Lipedema begins at puberty, and I remember growing thicker and bigger legs than anyone else I saw from a very early age. I hated my legs and have avoided anything that reveals them all my life because I get mocked at worst or stared at in dismay at best because my legs look… alien on me. They don’t belong with the rest of me; I don’t know how else to say it. I’ve lived most of my life in shame, and I’ve tried every diet, including gastric bypass and then a bypass revision in 2019. I have lost 75 pounds since starting the revision journey in 2019; my legs have only grown, not shrunk. People with lipedema are told they are fat, lazy, need to exercise, need to eat less - - - NONE of that will affect lipedema. It can help slightly by getting rid of some unaffected fat, but the inflamed, odd, lumpy, painful, continually growing fat won’t change.

 

Lipedema’s trajectory in my life has been snowballing, and its damage is exponentially growing. And it is terrifying, people. For the worst, it has changed everything for me these past few years. I used just to tolerate it and didn’t complain. It was an aesthetic curse, but I thought it was my fault and that it was just me being fat. I had the bypass revision praying it would halt this problem, but now that I know it, I see why it didn’t work.

 

Lipedema has cost me my walk. The fat gathering on my inner thighs is so much that my legs can’t walk straight like a pair of scissors; they have to swing wide around each other. So, I shuffle/waddle now. I’m embarrassed to see people who haven’t seen me in years.

 

Lipedema has cost me physical comfort. Because of the inner thigh fat, my hip bones and leg bones have been driven further apart, which, mainly because my right leg is longer than my left, has caused me to have severe pain and misalignment in my right ankle and foot. There are some days when I literally cannot walk, and the pain is too intense to put weight on my foot. I have to use a rolling chair like a walker in my home. And I can’t go anywhere.

 

Lipedema has cost me my ability to “look normal.” I now wear a hard plastic Ritchie brace from under the foot to mid-calf. I’m supposed to wear it all the time that I walk. I occasionally wear other shoes with good insoles, but I pay the price for going without the brace. The brace is evident in how I move, and it often peeks out under my long skirts. I have a dear friend who helped me make a long slip with lace to come down and cover it for the most part, and I wear black stirrup yoga pants to camouflage it as best as I can. I am not sure how I’m going to handle summer, though.

 

Lipedema has taken a massive blow to my sense of confidence. I feel more vulnerable, more “out there,” more uncovered now that everyone can see my ankle cuffing, despite wearing long black stirrup yoga pants every day to cover them. There’s not much hiding these without the one pair of baggy ankle boots that fit me, and even then, it is still apparent I have unbelievably large legs. I have only one brand of loose, scrunchy ankle boot I can use to attempt to hide this (I’ve gone through at least half a dozen pairs because they’re not super high quality for heavy bodies), and most days, I can’t even pull those up all the way. [I will say I have felt a renewed sense of beauty upon discovering these ankle-length sari wrap skirts I’ve gone crazy over. That has helped remind me that I may be disproportionate, but at least I can be walking art. <3

 

Lipedema has cost me my ability to keep clean on a flight – my knees hit the walls, and I cannot reach through my inner thighs. [TMI? I’m sorry. It's just true, and I think people need to know how serious this is.]

 

Lipedema has cost me (and Dave) our intimacy. Between the lack of space caused by my inner thighs and my legs' thin, painful skin, we are rarely successful, even if the pain is low enough to feel like I could be intimate. It is nearly impossible.

 

I have been getting broken-up sleep on the living room recliner; I am tired. Lipedema is starting to cost me my ability to sleep in an actual bed. The pressure on my legs and my right foot is too painful.

 

Lipedema has cost me the ability to dance how I used to.

 

Lipedema has cost me the ability to walk halfway around the block without limping in pain back.

 

Lipedema has cost me days of my life. My last flare-up (due to accidentally missing my diuretic twice in a week) was so bad that my skin swelled up so thin it broke open and seeped for days. My legs felt sunburnt; I could not let them touch each other. I couldn’t put on clothes. I laid in bed for three days, in pain, crying, avoiding the kitties, knowing that cellulitis could get in, I could go septic anytime… each flare-up is worse than the last, comes with little to no rhyme, reason, or forewarning. Eventually, infections and sepsis will kill me if it doesn’t get taken care of. I can’t take a round of antibiotics every time my skin breaks and expect to not escalate out of control. Currently, I’m in a flare-up (for no reason I can identify) where I have blisters breaking out, and all I can do is elevate, compress lightly with leggings, keep wounds covered, and pray.

Finally, Lipedema could cost me my career if I can’t work! I can’t go to work if I can’t get dressed! :*(

 

So, you ask, what can be done? I wondered the same myself, and, thankfully, over the years since my Aunt Melissa told me about it, I’ve miraculously connected here and there to a few people who know about it. There’s a plastic surgeon in Beverly Hills, CA and another somewhere in Germany. I like the idea of Germany, but it is not like I’d be there for fun. And Donna, my birth mother, has offered to fly to the surgical site in California to be my caregiver. This Beverly Hills doctor, Dr. David Amron, has done over 4,000 surgeries on people with lipedema for more than 28 years. He uses a “tumescent, water-assisted” liposuction type that removes only the inflamed tissue. It spares the lymph nodes and is done in three surgeries so that I can handle the inevitable swelling with compression garments, lymphatic drainage massage, etc. The surgeries take place over three months; I need to fly to California three times, and cover hotel stays for 12 nights.

 

I had a virtual consult with Dr. Amron a couple of months ago. I had to send pictures of myself in nothing but a bra and a thong. It was scary for me. Thankfully, he was very kind, polite, and professional. He told me my weight gain history – where the distribution was, the pattern of gain, etc. He knew that I used to be unusually hypermobile (like I could do the yoga poses most couldn’t). It had something to do with unusual collagen levels in women with lipedema. He was friendly without being fake, honest without being pushy. He knows his stuff, and I took a lot of notes. At one point, he said, “Amy, your primary diagnosis has never been Obesity. It is Lipedema.” He explained that lipedema weight – which I couldn’t control – caused the initial weight gain in specific areas. Then the excess fat causes excess estrogen and makes the gaining spread throughout the entire body. Eventually, all excess weight leads to what appears to be a simple condition of obesity.

 

Being obese has been the root cause of years and years of sustained abuse. So, naturally, Dr. Amron’s statement made me cry.

 

I’ve spent all my life feeling guilty and out of control. Yes, after so much restriction, dieting, and internalized misinformation and shaming, my relationship with food hasn’t been the healthiest. Yes, what I eat at times hasn’t helped. But, overall, this is not my fault - I don't believe that even the weight I carried on the rest of me is my fault. The lipedema fat is why, even when I lost 150 lbs., very little of it was from the lipedema-affected areas.

 

So, what are we looking at? What’s the bottom line? They tried to work with my insurance company [Amerigroup, currently] and were summarily dismissed. I even asked what would happen when I started getting insurance through my job (Kaiser). Again, dismissed.

 

Even though there is a dot org website for lipedema, there have been people on tv with it, even though there are “call to action” writeups and pictures available with a simple web search… almost no doctors I’ve met have even heard of it. I only recently saw that there is finally a diagnostic code for lipedema. Up until then, my chart note said, “Patient reports having lipedema.” And that’s after I *insisted*, after talking about it for over three years, that she put *something* about it in my chart!

 

*sigh*

 

The total for the surgeries – not the flights or hotels or the massages – is $59,400. And it doesn’t cover the removal of any excess skin. If I want that, it’s $14,500 more, so $79,300. I’d go for the lesser amount, but I’ve dealt with loose skin, and it SUUUUCKS. It overlaps and touches other skin for extended periods, causing infections, which was part of why I went with the lower body lift back in 2014). I want to get it all completed if I can. I could give zero craps about showing my bare legs to the world; it is not an aesthetic desire. I want to be whole, be done, go on with life infection-free, and live it to the fullest.

 

I will somehow find a way to cover flights, and another friend has generously offered to help with the hotel costs. I cannot fathom asking for more than the surgery cost. I think I can manage the rest of the things if the surgery is covered.

IMPORTANT: It can be challenging to see it when reading such an upsetting writeup like this, so I want to assure you – PLEASE don’t be afraid. I am in love with life and happy to be alive. I have the most remarkable, most supportive village around me. I have a fantastic family who loves each other and cares about maintaining our closeness. Dave is the most extraordinary man I’ve ever dated, let alone called mine and lived with – he is a dream come true for me! And I am a year and a half into a career I am absolutely in love with. I have the things I want in this life, and now I want to be able to live it for as long as possible. If I can get past this, I feel like my best years are ahead of me, even if they are few (due to being 49, not to this plague I have). I am going to fight for my life!!!

 

Wow, that’s a lot. I’ve meant and needed to write this out for months, and I haven’t known what to say or where to start. Seeing Dr. Amron has at least given me a board to jump off of. Oh! Also, he told me I’m in stage 3, not stage 4, which was hopeful there. I was afraid he might size me up and say, “You’re too far along. Your skin integrity isn’t strong enough,” or something like that. I MUST make this happen. I am not exaggerating when I say my life depends on this!!!

 

Another tricky topic (but why stop now): I had to file for bankruptcy seven years ago this December, meaning this bankruptcy will be over in December 2022. Current bankruptcy means I may be rejected for all loan options until then at LEAST. So, I am trying to baby this condition and wait until then, which would enable me to take out some loans to help hopefully. I don’t know how to handle the debt, but I have no other choice. I don’t want to put this off longer than necessary. I feel like my life is a race against time right now. I have no idea what will happen on my next flare-up.

 

This part is where you come in. I am uncomfortable asking for this kind of help. This massive amount of support. I’ve never felt so humbled nor so desperate. So scared. Our medical system has me in the position so many before me have been (or are) in – having to do a GoFundMe for primary, undeniably necessary care. It is is so upsetting! I am sorry to ask. If I have any way to repay you all, I will. I can’t make this happen without a lot of help. And I won’t live long if I don’t make this happen. I’m sorry to put it that way; the double-barreled truth has been pointing me in the face for over a year.

 

Thank you for taking the time to read this and consider helping. This GoFundMe won’t be coming down anytime soon; I’ve seen some people contribute a small amount monthly to the GoFundMe of a loved one; that way, it’s not such a difficult thing to manage. Whatever works for you – no matter how small - will be helpful. I am equally moved by the $10 contribution of a friend who struggles as I am by larger contributions of those able to do so. I am in a tremendous gratitude that I can even screw up the courage to ask, knowing that the haters’ voices on this public plea will be minimal because of the love and protection I have from those I know.

 

I have pictures to share; just reach out to me since I can't put them here. Sharing these is the biggest reason I’ve been scared to go ahead with this; I might as well be posting nudes; I feel so utterly vulnerable putting these out there. I am afraid people will think so differently of me now. I admit I am not that put-together, confident-appearing woman you think I am. Not entirely, anyway. I am acknowledging that I am gravely disabled. It is terrifying. But I think the pictures are essential. They are necessary for people actually to witness this condition. I don’t like being a spokesperson for this to be brought into awareness… and I am doing it anyway. Lipedema must become known.

Thank you, lovelies, for your time, attention, and assistance. <3

 

Here is a link to Dr. Amron’s website. It is striking that I am not wheelchair-bound, based on other patients’ stories. https://www.amronmd.com/lipedema