10. Lipedema: The Diagnosis and the Treatments

Nichole Smokoff

 

Lipedema:

Often misinterpreted as obesity, lipedema is a chronic and painful condition where fatty tissue excess builds up  in the legs, hips and sometimes arms. Eleven percent of the female population is suffering from lipedema—an estimated 17 million Americans— and it is almost unknown in the medical community; A 2004 Stanford study showed that most medical students spend less than thirty minutes studying the entire lymphatic system. (I know, it’s shocking.) It is unclear whether the lymphatic system is negatively affected by lipidema or vice versa, but, either way, the lymph nodes are getting strangled by the fat deposits and the greatest suggestion Nichole has is to MOVE YOUR BODY. In order to drain those lymph nodes (that are busy storing all of the icky stuff our body is desperate to expel), the body needs movement. If you think you may have lipedema and want more information, go here. 

Nichole Smokoff:

“You have to be smarter than the person in the room who has the higher education than you.”

Nichole stumbled upon a website that showed a photo of a woman with lipedema and couldn’t believe that other people looked just like her. At ten years old, Nichole realized that her body was starting to look different from her friends. It took another three decades to stumble upon that photo and get a diagnosis. She has since made it her mission to educate herself and take control where she can over this disease—and that includes educating the public.

You can contact Nichole directly at golden13ratio@gmail.com

You can find her on Facebook: http://facebook.com/UniversalRatio
 And on Instagram: FitFat Love

Resources in this Episode:

Listen to this Episode if you are Especially Interested In:

  • Lipedema
  • Disorders associated with being overweight
  • The role depression plays in lipedema and obesity
  • What it’s like to go to the doctor when you’re an overweight woman
  • How to love your body no matter what
  • How to navigate a lipedema diagnosis
  • How to self-advocate at the doctor
  • How to treat lipedema
  • Self-love in the face of lipedema
  • Water-only fasting
  • Nutrition and an anti-inflammatory diet
  • Liposuction
  • The lymphatic system
  • All of Nichole’s advice to people with lipedema

Happy listening!

 

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9. How to Self- Advocate at the Doctor’s and Why it’s Crucial

Natasha Cecere, self-advocacy hero 

 

“You are allowed to be demanding and annoying about your health” 

 

Self- Advocacy:

This is a topic near and dear to my heart. Probably because it saved my life. I have always said that I am my own primary care-taker and everyone else is supplemental—including doctors. Someone I agree with once said, “the days of doctor knows best are OVER.”

For the first episode of 2018, I chose to bring on Natasha Cecere a knowledgeable and fierce self-advocate. It’s the resolution time of year, many of you are grabbing life by the balls—taking control where you’ve regrettably released the reins. As far as I’m concerned life= HEALTH. Take your health into your own hands, don’t simply surrender your most precious self to the “white coats in charge.”

In this episode, you’ll learn some easy self-advocacy tips and hopefully feel inspired to take control of your health.

Natasha Cecere:

After facing her own mortality due to a rare reaction to Hepatitis A, Natasha began educating herself on health and has since learned so much about her body and medicine that it is one of her great life passions. Her interest is especially strong in women’s health.

Natasha is an East-Coast transplant, living in Hollywood. She is an actor, storyteller, singer, and body and sex advocate. You can find her on Instagram @funnygal83

 

Listen to this Episode if you are Especially Interested IN:

  • What info to give your doctor and what it’s safe to withhold
  • Antibiotic misconceptions (and different tips for taking them)
  • Women’s health and how to make the most out of gyno. appointments
  • Mirena IUD complications and how to advocate for removal
  • Who is safe to use Mireana IUD and who shouldn’t
  • Why it’s worth it to look silly at the doctors office
  • Why you can’t care what others think
  • Listening to your body above all else
  • How to learn about your body
  • Quick and easy ways to advocate for yourself at doctor’s offices, in hospitals and at home.

 

Reminder: We are not doctors, and we highly suggest everyone see a doctor that they trust and respect. While we suggest you push for what you think is right for your own body, we also suggest getting multiple opinions from multiple doctors before making any rash decisions. 

Happy Listening!

xo

 

 

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On Mucus, Urine, and Peace

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Mucus:

I’m home sick—”normal” sick. I have plump yellow and green stuff building up, breaking up, and making its way out. The “normal- sick” sensation remains one to rejoice over. I didn’t experience this for a couple of years—something about Lyme making it impossible for my immune system to work enough to fight common infection—I don’t get it. But what I DO get is that yellow stuff equals normal infection and that’s the kinda thing I’m after. So, hooray, right? Well, not quite.

A couple of weeks ago, I received an emergency phone call from my immunologist. I’m on Medi-cal. For the most part, Medi-cal doctors do not emergency- phone- call me—I’m lucky if they know who I am, can find my files, or call me back after I leave a 911 message. It’s been one of the most frustrating things about being sick: bad doctors, poor treatment. But as the most unpleasant of pleasant surprises, a couple of weeks ago, I got two emergency phone calls, one after the other, “Jacqueline, we need you to come in first thing in the morning to review your recent blood work and get the process started for the IVIG.It’s very important we get going.” I know what my numbers are (I’ve been following them closely and consistently telling the doctor that I need to get started on the IVIG) but still the phone call scared me. It must be bad if the doctor is going out of his way to call, I thought. 

(more…)

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I am Lonely; I am Loved

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Throughout illness, I could not simply or efficiently answer the question I was so often presented with: “how are you?” I’m sure the answer seemed like an obvious, “not good.” To  the outside eye— I was undeniably amidst a shipwreck. I was skinny and pale and frail and depressed and being told there was probably no way out.  But “not good” didn’t resonate—it wasn’t true. The experience of being sick  felt (feels/felt/feels) dynamic.  I was learning indispensable lessons. I was developing as a human, deepening as a spirit and as a creative. I was gaining a wealth of knowledge and a sea of love and compassion. How could I be miserable about such a beautiful makeover?  I was very hopeful—always, almost painfully hopeful. I once read that “hope is the opiate for the truly hopeless.” I wondered if that was me. I still wonder if that is me. Maybe it is, but it feels more true to say that it has been light and dark all at once. All of my life, maybe—I have felt the lightness in equal proportion to the darkness. Amongst these monumental inconsistencies was the desperate loneliness I felt while absorbing more love than I even knew existed. A love not only from my fellows but also from myself. But what brings me to this post is not necessarily the reflection of the past (although, I am very much reflecting) but the feeling I have presently: Why after getting so much healthier do I still sometimes feel so completely heartbreakingly alone?

(more…)

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How I Step Into the New Year

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It was hours before midnight, and I was already wasted. Running around in shredded jeans that put my hip bones on display, a tight red, spaghetti- strap shirt that revealed the push- up- bra- boobs of a teenager, and a pair of red sunglasses just to complete the “Fear and Loathing in Las Vegas” look, I was not making mom and dad proud. The New Years Eve party I attended was at my own house—my parents’ friends, my friends, and my brother’s friends shared the space in one excitable gathering. We had been throwing these parties for years, but that would be our last one—the last time we could pretend to be somewhat functional. Although, I’m not sure we had anyone fooled.  My father was only half present that year, leaving the room every so often to take a hit— an omen for what was to come. The clock was running out on 2003, and I had no resolutions for 2004. I was 15 and lost. All of the vitality I had lived with most of my life was just gone, eaten up by poison. I wanted out, I sought escape every chance I got. Around ten PM, with a red Dixie cup in hand, I sloppily took a stand atop our coffee table. Inspired by the music of The Spice Girls (I had picked out the song), I made a loud, screechy toast, “You know,” I shouted, “people never keep their resolutions… so THIS YEAR, I’m going to make a resolution to drink and be fucked up as much as possible because THAT’S a resolution I know I’ll keep.” Laughing so hard, feeling so clever, I stumbled off the table, found my way to the bathroom and spent the remainder of the night puking my guts up. I missed midnight. Technically, I was off to a good start considering my resolution, right?

(more…)

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Treating Anxiety, Part III: Lyme disease

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“I just have a deep sense, a deep inner-knowing, that I am safe in this world now,” I told my mother one day in early 2013. It was true. For a girl who seriously suffered from panic attacks and PTSD, I had gotten so far in life.  I had worked through my issues very seriously, utilizing everything from medication to meditation, and it was all proving worth it.  Life’s anxiety inducing situations rarely spun me into a panic— deep down I could feel that the Universe was my ally, not my enemy. My risk-taking, fear-facing, and spirit-searching had left me with (what seemed like) an excess of emotional and physical freedom. And I attached to that freedom like it was my identity,  endlessly exploring my options, hopping the fences that said “no entry,”  and following my heart’s desire to go to the parts of the Earth that were untouched. I didn’t want to walk away from this life unscarred, untouched and inexperienced. In an effort to affirm this preconceived notion of myself, I took a camera man and  got my photos taken while rolling around in the dirt as an expression of my free-spirt. This attachment to identity and proving myself…it got me sick. How ironic that, in an attempt to solidify myself into one small box called “free-spirit,”  I got bit by a tick, I contracted Lyme disease from the tick,  and everything I thought I knew about myself violently unraveled.  It was terrifying. That “sense of safety” I had confidently chatted about to my mother months earlier was tested and, as it turns out, fear is a whole different beast when it’s NOT irrational. But it had to be faced and overcome because if I had acted from fear when it came to healing from Lyme disease, I would have died.

(more…)

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Treating Anxiety, Part II

Part I here. 

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My hips led me around a Montauk boutique. My jean skirt was too short, my acrylic nails too long, and my shirt too tight. I drank too much, smoked too many cigarettes and cursed more than a “young lady should.” I was too wild, too antsy, too dishonest, too sexy. I was monitoring my movement around the store, looking for mirrors so I could watch myself sway by. Deeply immersed in the passion of self-obsession, I could hear my mother’s muted voice trying to pull me out of my too-cool-for-you attitude, “Jack, jack, this is cute, isn’t it?” She held up a beige shirt,  “Ugh, no mom,” immediately dismissing her excitement, “I don’t like it.” “Well, it’s not for you, it’s for me,” she said annoyed. “Oh. Well then sure.”  I was 15. My mother and I were vacationing in Montauk and we were killing time shopping. At the register,  I spotted a brown leather bracelet. I picked it up to see what was inscribed in it and read, “feel the fear and do it anyway,” written in italic script.  I was cosmically drawn to the saying. It made me feel like the badass I was determined to be. My life had been so overtaken by mood altering substances and experiences that I was numb to my childhood, numb to my passions, numb to love. SO, when I saw that bracelet, I thought, “yeah, feel the fear of overdosing and take all of the drugs anyway, yeah feel like you’re going to die from the insane adventure and do it anyway, be afraid of drunk driving and do it anyway, feel the fear of mixing all of the booze, of fucking the wrong guy, and DO IT ANYWAY.” It was with that M.O that I begged my mother to buy me the bracelet. Because she was in denial of my M.O, she agreed. I wore it everyday,  I followed its direction, and it got me into trouble. That is, until I learned how to use that saying to my life’s benefit.

(more…)

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Treating Anxiety, Part I

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In 1998, at ten years old, I discovered that Mama Cass died choking on a ham sandwich. Maybe I heard it on TV. Or maybe I was eavesdropping on some random adult chatter. Or maybe my mother told me during one of my relentless questioning sessions about all of her favorite musicians.  It doesn’t really matter. What matters is that with that news, I was hit— for no rational reason— with life-changing fear. My brain grabbed onto this idea of “death -by -choking” like a shark grabs its prey: What if I choke in the school lunchroom,  nobody hears me over the chatter and I die? Days passed as that thought flipped and flopped and tossed and turned restlessly—violently—through my brain. Choke and die, choke and die, choke and die.  I sat through school lunches half invested in the innocent adolescent conversations about lipstick and half obsessed with my imminent death. One March day, the thoughts were so overbearing that when I took a sip of my peach flavored Snapple, it went down the wrong pipe, coughing commenced, and I came into contact with my first debilitating panic attack.

“Are you ok? Jackie, are you ok?”  The teacher spoke to me over the microphone, “stand up, stand up.” I stood up. I was overheated from both embarrassment and physical stress. I was already unpopular, but now an entire cafeteria of cruel ten and eleven year olds were staring at me.  I gasped for breath and simultaneously considered my poor wardrobe choice that day. If I had known I was going to be the center of attention, I wouldn’t have worn that stupid pink cardigan and those unbecoming gray sweatpants. “Nod your head, nod your head,” the teacher was saying, “do we have to do the Heimlich?” I knew they didn’t have to do the Heimlich. After all, it was only Snapple that I was “choking” on. But I certainly wasn’t going to admit that, not after the spectacle I was creating. My coughing slowly subsided, and a  breath of relief rippled through the couple hundred kids in the cafeteria…  immediately followed by an outburst laughter. I sat down, wanting to hide, and suddenly—just like that— all of the ease I had previously lived with was gone. Who knew that it was a luxury to be able to interact with your peers, go to school, eat lunch, and exist in the world without a consistent feeling of impending doom holding you back?  I tried to act normal. I walked with the herd to my next class, took my seat, stared at the chalkboard, and wrung my sweaty hands seeking some sort of solace in myself. Something was infinitely unsafe, but I didn’t know what so I couldn’t even protect myself. The walls were closing in on me, my friends looked like enemies, words were muttered, faces were fuzzy, and I burst into tears.

I was sent to the nurse’s office. I could barely speak by the time I got there. Sweating through that stupid fleece cardigan, I was crying so hard that I could only gasp out one  comprehensible word at a time, “I—choked. and. am. —scared.” The nurse looked at me confused and harshly, got me a five ounce dixie cup of water, and led me to a small, poorly lit,  corner room. There was one beige metal folding chair meant for me to collect myself on. “Sit in here and calm down,” she said.  I took the seat thinking I’d rather be anywhere else or maybe nowhere at all. I wanted a hug desperately. That is what I wanted. As the nurse closed the door, I heard her say to her colleague, “I mean, seriously, she should be able to control herself, she’s ten years old. What’s wrong with her? My God.” Did she think I couldn’t hear her? I was so embarrassed, so ashamed.  I didn’t know what was wrong with me, and if I could have controlled it—like she was suggesting— I certainly would have.

By the time I got home that day, I had decided that I should probably never leave my bedroom again and that I should definitely never eat again. If it was up to me, I would have lived a very small life. My parents got in the way of my ideas.

I cried through dinner one night, trying to spoon a small amount of plain broth into my mouth but every time I looked at the bowl of liquid, I was hit with the memory of “choking” in the lunchroom. I just cried and shook until my father lost his cool, dropped his fork and said, “What’re you gonna do? Never eat again? If you went outside and tripped and fell, would you never go outside again?”  I felt pathetic. What I was experiencing was NOT logical and could not be beaten with logic.

My mother held me in bed that night as i sobbed and sobbed. I said, “I wish I had some physical illness. Even cancer. Anything but this. It’s so scary.” And I meant it. I was in unthinkable pain. Thankfully, my mother understood what I was experiencing due to her own turbulent history with panic attacks and, as a by-product, she pushed me. She wasn’t going to let me become a slave to my anxiety. It was strategic, and it was brilliant. She sent me to school everyday, she denied me medication even though doctor’s suggested it, and I was forced to take part in all daily commitments whether I sobbed through them or not.  To this day, I consider it the greatest gift my mother gave me. To this day, I consider it her shining moment as a parent.

When my seventh grade field day came around, I was hit with a new deepening wave of panic. Who knows why. There was no real why. At 7:30 am, I hid in the closet sobbing, “I’m not going. Please, please, please don’t make me go.” I begged for an hour until the bus came and my mother lovingly pushed me out the door. I went. I mean, I WAS forced.  I went full of terror, but I went. And, as the day went on under the suburban sun, the fearful pangs subsided. The distraction was helping. The sun was helping. Exercise was helping. I was easily able to take part in field day activities, and I even won a flimsy second place ribbon for a short-distance race. By the end of the day, I felt great, and I was deeply proud of myself.  I sprinted through my door that afternoon, impatiently shouting at my mother, “mom, mom. I had the best day ever. Thank you for making me go! Look, I won 2nd place in the sprint!” She was so proud of me. In that one day, I had instanteously grown muscle where there wasn’t any, I had a new life experience that would forever change the way I lived—a reference point for what it felt like to feel the fear and do it anyway which remains a saying I try to live by. Curiously—or not so curiously— I didn’t have another panic attack for seven years.

At nineteen years old, everything I had learned about coping with anxiety was put to the test. My panic attacks came back, and this time they were not so easily defeated.

To be continued….

Love,

Jackie

 

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Fall Down, Get Up, Repeat.

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Ideally, I would wake up at 7 am everyday and immediately scoop a fresh wad of coconut oil into my mouth for fifteen minutes of oil pulling. After spitting out the freshly swirled toxins, I’d down 16 oz. of fresh celery juice. Then I’d use green tea to get my caffeine buzz on, journal, pray, and meditate. Around 8:30 am, I’d  start responding to emails and writing. I’d make my morning smoothie around 9:30, do more work, eventually get to a yoga class, make a raw salad for lunch, take an hour to rest, hit an infrared sauna or acupuncture, get some joyful activity in like socializing or dancing, and end my night with a healthy ,balanced meal, my necessary supplements, powdered magnesium, and red root tea. I’d then zap with my TENS machine and be in bed with a delicious story by 10 pm to read for thirty minutes before I passed out, benefitting from a solid 8 or 9 hours of perfect rest. IDEALLY. Sounds overwhelming right? So perfect it’s jarring. That’s why it’s an ideal. Because right now I’m sitting in this cafe writing and eating french fries. I woke up at a lagging 9:30 am,  oil pulled for ten semi-bearable minutes, drank coconut water, drank a couple of cups of coffee (instead of the more advantageous tea), responded to emails, made my smoothie by 11:30 am,and got out of the house— not to do yoga but to work. Also, I forgot my supplements at home. Eh, oh well.

I am imperfect. At everything. Including healing from Lyme disease. A shorter way to get the point across is to say, “I am human.” But I have found that statement to be ineffective; we need specific examples in order to actually believe that other people are just as human as we are. Or I do, anyway. I’ve always felt a little paranoid that I was missing some very important piece of information about this whole life thing— especially the whole healing from illness thing. Like other people had the rules—the user manual, the directions—and I didn’t. I would often get advice from other women—people who had previously suffered from Lyme—and I used their advice as an opportunity to beat myself up. Everyone was doing it better than me! “Your” diet was better than mine (or at least you were more disciplined about it), “you” were a better meditator, you saw the “right” doctors, took the “right” herbs, did the “right” research, spent money on the “right” things, you drank better water, had a better air purifier, did the “right” energy work, etc.  I thought I was bad at being sick (and “you were good at it??)  I cried every single day even though I knew it was harmful to my central nervous system. I cried every single day. And I thought maybe if I could just stop crying, I’d be doing it right.  I looked at people who seemed to hold it together—was that the right way, I wondered? I looked at people who worked serious jobs—was it a more serious job I needed? I looked at people who took two years off of work—did I need to take off? It was an endless mind-fuck. And now people are looking at me through sick eyes and wondering some of the same things: what does she do that I am not doing? She’s better at it than I am. I can’t be as disciplined as her. What’s her diet? Her protocol? on and on.. I’ve heard  you say these things and I’m here to tell you all about how I fuck up.

It’s important for me to write this as a wellness advocate— as a person who preaches a certain diet and lifestyle—to let you know, that I fall short a lot of the time. We cannot all be Kris Carr or Louise Hay. I hold myself to pretty high standards as you saw in my “ideal day.” Some practices have just become habit for me—no questions asked. And other practices—the ones that have less severe consequences— I have to work hard at. And some things, I’m just waiting on the willingness to carry out (like quitting coffee). The most important thing is that when I do fall off of the horse, I get back on. And that I get back on quickly. One of my dear friends once told me, “there’s only one rule. The rule is that you never, under any circumstance, beat yourself up.” That’s the rule I carry with me. It makes it much easier to get back up if I’m not whipping myself into a state of unrelenting weakness, forcing myself to stay down.

Two weeks ago, I was in Hawaii—my first vacation in three years. I took the vacation thing to heart. I ate all wrong, consuming more dairy and gluten than I’ve had in at least a year. I over did it physically, doing long hikes without shoes/water, and I didn’t get enough sleep. Oops. A few days after getting back to LA and trying to get back into my healthy groove, it was my birthday. Again, I bailed on my raw afternoon salad, I ate sweets that night, and instead of prayer and meditation, I spent the whole morning crying. Then it was Thanksgiving and, again, I “cheated” on my diet eating some extra desserts because… it’s the holidays!

It’s true. It’s a very hard time of year to eat a mostly-vegan, gluten-free diet. So, I fucked up a little. Every single day, I fuck up a little. Either I eat something a little off of the perfection I’m going for, I drink too much coffee, I forget to exercise or I don’t rest enough. It is challenging to fit it all into one day and have a job and live with any bit of flexibility. So, I don’t. But I do always wake up with the intention to try. I am always willing to get back on the horse when I fall off. My inner dialogue after whatever poor choice I made is something like this, Ok, that didn’t feel great. What’s next? Should I maybe consider doing it differently next time? Should I drink some detox tea or hit a yoga class? Or do something else that makes me feel good now? It’s OK. It happens.  If I don’t beat myself up then I have the space to compose a solution. So, let’s be real: you’re probably going to slip up this holiday season and abandon some of your custom self-care practices. What do you do then? Keep going, be kind to yourself, allow humanness and try again. And please know that all of us—all of us—are fucking up, too.

With fun and love,

Jackie

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Thanksgiving!

Happy Gratitude day!

I’m wishing everyone a fulfilling day with family and friends.

See my post on gratitude for some advice  on daily G-spot living!

For those who are not feeling well today—whether in body or mind—I’m holding your hand, I’ve got you.

I once was complaining to my grandfather about how hard life felt. He, who had spent two years in the hospital healing from 3rd degree burns, who lost his beloved fiancee in that same fire, who then lost half of his foot in a welding accident, who had family troubles, and financial struggles for so much  of his life— HE said, “Ack, Life’s hard? Eat a piece of candy!”

I like to remember that simple and joyful solution on days like today. It’s just not that serious.  Just eat a piece of candy.

A small disclaimer: my grandfather also eventually developed diabetes. So, maybe take that quote figuratively instead of literally.

Big love. Big fun!

Jackie

 

 

 

 

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