Monday, November 11, 2013

Photos Make Chronic Pain Visible


If you live with chronic pain, you have vast quantities of company. The estimates range from a few million to one-quarter of Americans in long-lasting pain. But you might never know it. Pain is not visible. There’s no 12-step group for it. And if you’re hurting for long, you’re likely to retreat into isolation rather than reach out to others.

Enter the US Pain Foundation (US as of only this January; it began as the CT Pain Foundation), a volunteer-based group founded by Paul Gileno, a former chef who had to find a new calling after a broken spine left him in constant agony. It runs support groups; does advocacy work; and tomorrow, beginning at noonish, is holding a free-lunch session at the Tufts School of Dental Medicine that features The INvisible Project, which documents in photographs and text the lives of people with chronic pain. (One example is here.)

The project’s aim is to educate others about the lives of people with pain, Paul said: “I think the biggest perception for people who don’t have chronic pain all the time is that if they don’t see it, then it’s almost like they don’t believe it after a while. In the beginning, if you get injured, people say, ‘Are you okay?’ But after a while, that chronic pain stays and it’s a year later and people tend to say, ‘Okay, when are you going to get better?’ Well, I wish I could get better right now but my pain is still there. We’re saying, ‘It’s real and we want you to know this is real.’”

Also, Paul said, “We want to show other people with pain that their new normal isn’t much different than everybody else’s who suffers with chronic pain. We want to show them that it’s okay if you’re home one day and not feeling well, it’s okay if this is all that you can do. We want to show them that this is the new normal and they’re not alone.”

The people featured in the project have diagnoses ranging from arthritis to FIBROMYALGIA  to lupus to obscure syndromes few have heard of, but they have two things in common: They’ve been chosen by fate to be physically tortured, and they soldier on. 

Their stories tend to be Job-like; I can’t imagine what it’s like to live their lives, and to tell the truth, I don’t dare try. And that’s part of why people with chronic pain need to connect with each other, Paul Gileno said. “You’re understood on a deeper level that you need to be understood on. Because your family and friends aren’t going through it and can’t understand, and you need that understanding and support to move forward.”

“It’s so common for people to fall into such a deep state of depression and suffering,” he said. “And it becomes worse because when you’re depressed you move less, and your body’s tightening up,” worsening the pain. “You start to lose where that original pain was, because now you’re riddled with pain everywhere. Our goal is to try to catch people when they’re first diagnosed so we can walk them through it. Right now when people come to us” — some virtual hermits because of their pain — “it’s like they can’t take it anymore so they need to reach out. We want to catch people before they get to that point.”

I asked Paul what the culture was like in an organization where virtually everyone suffers from chronic pain. I could imagine two possibilities: Maybe more grumpiness than in most workplaces, but also more compassion.

Over time, he said, the foundation has found many people whose pain keeps them from working but who still have valuable job skills and find volunteering very fulfilling. The key is redundancy, he said: If a project employs, say, three or four attorneys where normally one might have been enough, then “if you’re having a bad day or bad moment or bad week, you don’t feel that pressure of ‘Oh my God, i have to get that work done.’ We all understand that — we make sure it’s not all on one person’s shoulders.”

Everyone understands other aspects of “the new normal” as well: “We are a little slower, our timelines are different, a lot of people are up at night so that’s when they’re doing a lot of work, because they can’t sleep at night.”

Since Paul founded it in 2006, the Pain Foundation has grown to 27,000 members, he said. There are other pain-oriented groups, including The American Pain Foundation and The American Pain Society, but he found when he was injured in 2003 that none seemed to fill his needs. “My life had changed and I started trying to meet other people whose lives changed because of pain, and I couldn’t find anybody. I started the foundation just looking for other people. and it snowballed from there.”

Saturday, November 9, 2013

If you have fibromyalgia, you may want to read this


A message from Dr. Tom O’Bryan Founder, The Gluten Summit and theDr.com


Gluten can easily sneak into your diet and, if gluten is bad for you, those sneak attacks are rarely much fun at all. A Grain of Truth: The Gluten Summit will help you take the next step toward determining if gluten is bad for you, and reveal those foods where it often hides.

 

But enough about that for the moment.

Let’s take a sneak peek at some of the

other things you’ll learn next week!

(Yes, the summit begins on Monday! Can you believe it?)

 

 

My Chat with Lexi About Her Gluten- & Dairy-free Diet

Lexi is a bright-eyed 10-year old who admittedly “puked up in her mouth” a lot before she learned that her diet might be the cause. So, she took it in stride, switched to a gluten-free and dairy-free diet, and wrote a book about it!

 

Listen to Dr. O’Bryan’s entertaining interview with Lexi!

 

 

Underground Wellness: Gluten Talk with Dr. Tom O'Bryan

Sean Croxton of Underground Wellness invited me onto his podcast last week, and I brought some audio clips from The Gluten Summit interviews that will be available next week!

 

For example, find these topics during the podcast at the following times:

  • 10:08: Wheat: It’s the “staff of life”, ya know!
  • 18:45: Your immune system is like the Armed Forces in there!
  • 38:51: 30% of teenagers have subclinical heart disease!
  • 56:55: Even tofu can increase your risk of Alzheimer’s and Parkinson’s.

Listen to “Gluten Talk” on the Underground Wellness podcast now!

 

Though we sometimes talk light heartedly about gluten-related disorders and the impacts they have on people’s lives--humor can be healing, as you know--the fact of the matter is that only a small percentage of the population has been diagnosed with a gluten-related disorder, and a very large portion of the population has symptoms that may be caused by a sensitivity to gluten… withno idea that gluten is the culprit fueling their symptoms. 

 

 

I’ll say that again…

 

More than 300 symptoms could be caused

by the consumption of gluten, yet a very

small percentage of the population

knows it could be fueling the cause.

 

That, my friends, is the ultimate reason why “A Grain of Truth: The Gluten Summit” is so important: To help those potentially return to health who have no idea what is fueling their ailments, including you.

 

Do you know someone—a friend, family member, even yourself—who thinks they may be sensitive to gluten or with any of the following symptoms:

  • Brain fog?
  • Fatigue?
  • Irritable Bowel Syndrome (IBS)?
  • Unexplained rashes?
  • Migraines?
  • Tummy aches? 
  • Constipation or diarrhea?
  • Thyroid problems?
  • Unexplained weight loss (or gain)?
  • Joint pain?
  • Dental defects?
  • A child's failure to thrive or shortened stature?

All of these, AND MORE, could be caused by gluten in one’s diet

That’s why I encourage you to reach out to those you know, perhaps family members or a friends, and invite them to join you in watching The Gluten Summit. Simply send them a note over email, on Facebook or Twitter, a text message or a phone call, and say, “I really think you should check outtheglutensummit.com. It’s free. It’s online. And, it’s next week. Join me. We’ll watch it together.”

 

 

You could change a life next week, especially your own. 

 


Again, I am so appreciative of the fact that you’ll be joining us online on Monday. See you then!

 

Sincerely,

Dr. Tom O’Bryan

Founder, The Gluten Summit and theDr.com

Wednesday, October 30, 2013

Therapies for fibromyalgia pain

One of the latest alternative therapies for fibromyalgia is very old: tai chi. This is the ancient Chinese system of gentle movement that helps align your core energy, or "chi." The National Center for Complementary and Alternative Medicine (NCCAM) is funding a clinical trial of tai chi to see how it affects muscle-skeletal pain, fatigue, sleep quality, psychological distress, and overall health in people with fibromyalgia. NCCAM is also funding research on acupuncture, especially relating to fibromyalgia pain, and on biofeedback in treating fibromyalgia. 

Myths about Fibromyalgia

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Despite the fact that fibromyalgia has finally gained widespread acceptance as a medical illness, confusion abounds regarding this poorly understood condition. So it's time to put aside some of the biggest misconceptions about fibromyalgia.

MYTH: Your Fibro Symptoms Are All in Your Head
Truth: Fibromyalgia is a real medical condition, which includes specific medical criteria for diagnosis. And fibromyalgia researchers are learning more and more about it. In fact, we now know that the nervous systems of people with fibromyalgia process pain signals differently than people who don't have the condition.

MYTH: Only Lazy, Inactive People Get Fibromyalgia
Truth: Researchers actually suspect that many people who develop fibromyalgia are driven people, and that the stress of that drive may play a role in wearing away a person's defenses against fibro symptoms.

MYTH: There Are No Effective Fibro Treatments
Truth: Here's the good news. As more and more research is being done on fibromyalgia, we're learning more about it. And that's helping doctors pinpoint better, more effective fibro treatments. The catch is that what works for one person may not work for another, so you need to work closely with a doctor to refine and modify your fibromyalgia treatment.

Saturday, October 26, 2013

Having Fibromyalgia & defending my passion.


This is what I wanted to say to a woman that asked me why she wasn't getting Host Picks on Poshmark. I responded with my usual answer " SHARE SHARE SHARE" her response back was so stressfull that I started to write this back to her. Fortunately I re-read it & chose to be "MAGNANIMOUS" and say " Poshmark isn't for every one" but I still want to share what I was truly feeling like saying. I hope it isn't offensive to you & forgive me for any hurt feelings.❌❌⭕️⭕️✌️

" I may not have the verbage or the education that most people have. Poshmark is about love and sharing. For me its about what I can give not what I can get. I've already had my success, I retired at the age of 40. I'm a multi millionaire, and I do Poshmark because I want to give back. It's not relevant of how much time I spend sharing. I've been bedridden for almost 3 years. I finally got enough strength to find a new passion, regardless if I make money or not. I make money on my investment. Everything I have I own. I have no debt. I live way under my means. You being a business major, couldn't possibly understand my heart for Poshmark. This is a place for women who need an extra income and a purpose. From what you've said you have your purpose. Maybe Poshmark is not for you. It's not for everybody. Its a little like becoming a born again Christian. You become a follower of Christ because you have faith in a Creator that became a man & died on a cross so we can have a personal relationship with Him and have eternal life. If you haven't had an experienced with the Holy Spirit's love, its difficult to understand. Why else would a person  believe that we were created and placed on this earth to love other people. That is my purpose. I've been extremely blessed in my life. Yes I've had my struggles (fibromyalgia has kicked my butt). But in the end my Creator always gives more to me than I will ever be able to give to other people. That's why I choose to share other peoples closets and talk highly of Manish. He is a man that created a business that women with illnesses like myself can do without much effort. I use to make a lot of money at one time & worked my but off for the all mighry $$. Now that I'm retired, I get to choose how I spend my time. I choose spending my time helping other people. I'm in bed most the day anyway. As far as seeing you on Google+, I did ask people to do a practice run before Poshfest. No one did a practice with me so I didn't think anyone was interested. I do apologize. But that's all I can do is apologize. I appreciate the fact that the three things about you is that you don't tolerate bullshitters or tip toe around how you feel. I appreciate that you don't think that that's what I was doing to you. In the past when I've tried to defend myself because of my illness, most people don't understand it. Having fibromyalgia is a REAL DIAGNOSED CHRONIC ILLNESS. It can cause my brain not a function like a normal person, plus have memory loss. I had to take a lot of medication just to get to Poshfest, yes it was worth it. Even if I helped one person know that they're cared for, are accepted just the way they are, & that they're appreciated. What Manish has done for me by creating Poshmark is keeping me from killing myself. My pain consumes me every day. At one time I was on 16 different medications. When I had to rest and be in bed I started getting fat. I've always been a size 2 to 6. Now I'm a 12. Being in the beauty industry for over 20+ years, it was about how you look...Fashion....what's hot now...not how much college education you've had. It's been 20 years of my life being brainwashed into thinking if ur pretty, u can get what u want. If ur ugly & fat u better get an education. Poshmark has reprogrammed my brain to what's realy important. PoshLove it doesn't come from eBay, Copious, Amazon, or any retail store. Why have you interrogated me about "What has Manish & Poshmark given me for my time?" All I did was let U know how I share the Posh Parties & Co-host's closets way before the party even has a theme. Having a chronic illness, (fibromyalgia & CD) its nessary to keep my mind occupied so I don't think about the pain as much. If you haven't experienced a chronic illness then it would be difficult to understand." 
This is where I stopped & read my words....realizing it would just cause me more stress which makes my fibromyalgia worse. I've learned it's ok to feel angry when someone is attacking something you have a passion for. It's NOT OK to cause more stress by TRYING to defend your passion. 

Wednesday, October 16, 2013

Note to a friend

I wouldn't wish fibromyalgia on my worst enemy. What the Dr.'s will do is test u for every disease out there & when they don't find anything wrong, THEN they will test u for fibromyalgia. Here is what my symptoms are. It started when I injured my back in 2000. I never healed from it. I used to pop out of bed, now I can't get out of bed until live taken my morning pills & laid on my infrared heating pad for 30 min. & do my bed Yoga for 20 min. My body feels like I have the flu all the time everyday (going on 12 years now). One time I had the flu and didn't know it until my hubby said I was hot. I took my temp. 102 deg & had to go to Emergancy cuz it was after hrs. Now that I have sciatic on my right side, I ache from my toes to my pinky finger with no relief unless I'm sleeping or highly medicated. It feels like growing pains when I was a kid. A deep in the bone burning sensation, it's been 4 years now & my left side has compensated for so long now it's got a burning deep inside sensation. Everything that hurts from normal activity. I vacuumed my bedroom & Great room with a Kirby G5 auto drive & it put me in bed for the rest of the day with pounding pings that made me crawl in a fetal position. It wasn't always this way, it started off as flu like symptoms; fatigue, headache, body aches...then the sciatica came on like a bat to my body ( 20 yrs in the beauty business & bending over ppl waxing ) forced me into early retirement. I was bed ridden for 3 months, that's when I found Poshmark. About May of 2012, I tried to do eBay and almost sold a $250 Coach handbag for $10 bucks! Thankfully I was able to go in as my husband and buy it for $11. The meds for fibromyalgia are horrible! The side effects are memory loss, constipation, weigh gain, on & on & on. It's only by the grace of God I'm going to Poshfest. I started the blog so I could have a place to express my true pain without complaining on FB & Poshmark. I mention it in my meet the seller only to let ppl know that it's a real autoimmune disease. Women from around the USA have fibromyalgia PLUS other illnesses. It helps to know I'm not alone & gives me more of a reason to find a cure. The Dr.'s that actually believe it's a real diagnosis are saying there's no cure, that a person will only receive 50% relief EVER. It's like a death sentence without the peace of death. At least the other illnesses have that or can go into remission. Not to down play them, but only to say fibromyalgia NEVER gets a break of relief. I will find a cure! I feel like it's part of my destiny. The Blog is a starting place. I'm hoping that while I'm at Poshfest no one will be able to tell how much pain I'm in. I've learned different techniques of being social w/ a smile on my face with out being to fake. I'm constantly saying in my head "I can do all things through Christ that strengthens me" He really is my true healer, I'm learning that He didn't give this illness to me. Yes He has allowed it...for the big picture. I'm learning how to NOT burn the candles at both ends. How to NOT feel sorry for myself, but to forgive myself. How NOT to make "what I do, become who I am". That patience truly is a virtu, I now have the capacity to tolerate delay, & suffer without getting angry or upset. If u don't have insurance, & u think u might have fibromyalgia....take a hard look at your life. Are u eating to much whites; flower, sugar, milk, any food that is high in fat? Are u getting quality sleep? Do u burn the candle at both ends? Is your life balanced? Do u hold anger? Can u forgive? Do u exercise? Do u drink 1/2 your body weight in oz of water? ( ie. if u weighed 100lbs u would drink 50oz a day). Are you stressed? Over worked? Had any accidents? Memory loss? If u answer these Q's truthfully u will be able to make corrections & have a better life. I hope this helps u my friend. I may be only I my 40's but I have an old sole & learn quickly from my mistakes. Plus, I look at my family of 3 aunts & my mom to make sure I don't make there mistakes. Will I still make mistakes? Yup, but I wouldn't be where I am today without learning everyday. I know who I am. I know how to make corrections. I know how to have balance (even though I miss that one ALL the time UGGH) I've learned how to love myself without being selfish. I accept myself & others right where they are...even if I'm frustrated by them. My new mantra is "love 2 live-live 2 love" even if I don't feel like it. ❌❌⭕️⭕️✌️

Friday, September 27, 2013

Poshmark has given me a reason to get out of bed

Sara Lacy is an amazing Bloger. She gets the credit for this one

woman_shopperManish Chandra is a bit like the LA shoe and diaper kingpin Brian Lee. He’s a middle aged dude who has an almost uncanny insight into what drives women to shop.

He describes his company’s online shopping swap parties like a violent real world sample sale. “My investors couldn’t understand this, but it wasn’t like a nice boutique open house where people sip wine and look around,” Chandra says. “This was like ‘Get out of my way, I want this!’” He pantomimes women elbowing one another — with a technique I swear I’ve seen women use in the wild. (Not me, of course…)

When Chandra talks about his company, he even sounds a bit like, um, a girl. “This is so deep and so core. It’s tied to every emotion,” he says. “It’s vanity, ego, confidence and love. I tell the company what we’re really selling is love. And we know how to monetize the love.”

Like a scene from that awful Mel Gibson movie “What Women Want,” Chandra has found himself captivated with his wife’s closet. He examines what sits there unworn, with tags sill on it and what gets more heavily used. His comments on fundraising similarly sound like they could be from a female entrepreneur support group: “Raising money for a fashion startup is hard,” he says. “Most of my investors are men. They don’t get fashion. They turn to their wives or their admins, but neither of those are great data points.”

Well, apparently, it wasn’t too hard. Chandra’s company– Poshmark– is announcing a Series B round of funding today of $12 million lead by Menlo Ventures. Existing investors Mayfield Fund, Inventus Capital, and SoftTech VC also re-upped with this round. The money will be used to build versions of Poshmark on Android, the iPad, and the Web.

As we’ve written, you need traction to get a Series A or Series B these days. “Traction” is an annoyingly vague word in Silicon Valley, that’s a bit like pornography: Investors simply say they know it when they see it. Here’s what traction meant in Poshmark’s case: Users engage an average of seven times a day and an average of 25 minutes per day and there are two million likes and comments left every month, signaling a thriving social community on top of the commerce. And if you look at the aggregate asking price of things uploaded to the market place, Poshmark is on a run rate to carry some $100 million of inventory at any given time– and since the items being sold are second hand, that’s at a 70% discount to what those items would go for at retail.

I ignore most of the press release and embargo requests that come in, but SoftTech’s Jeff Clavier pinged me about the company last week, saying, “Poshmark has a level of engagement and transactions that I have rarely seen in my portfolio. It’s an awesome example of what it takes to raise in this environment.” An advisor to the company, James Currier, pinged me as well saying, “One unique thing to notice is that his vision about what women want  – and what motivates them about fashion — has been 100% on from the beginning.  It was weird to watch it play out so spot on, given that he’s an East Indian male who used to be in enterprise software.” (Disclosure: Both Menlo Ventures and Currier are investors in PandoDaily as well.)

To my knowledge Chandra hasn’t taken it this far… yet:

tumblr_lk6y2oB4q41qamx91o1_400

I needed the prodding to check it out. At first blush, Poshmark is like a lot of a rash of companies that seek to find people to buy stuff in your closet. I feel like Erin Griffith writes about one of these a week. We all get the widely-held desire to clean out our closets and repurpose what we don’t wear into new stuff we actually want. But the big challenge with these places– as our intern Sophiadiscovered last summer– is liquidity. We posted all kinds of stuff on different exchanges. No one wanted any of it.

Poshmark seems to have done a better job cracking that, although Chandra wouldn’t divulge details on revenues or users. Without that it’s a bit hard to know.

But there’s enough lightening around this concept that someone is sure to catch it in a bottle. The world is certainly ripe for a new huge multibillion ecommerce company. The last ones were pretty much the only ones– eBay and Amazon. (Zappos just barely got over the $1 billion mark with its acquisition by Amazon, and it was still losing money at the time.)

Poshmark seeks to replicate a lot of the early eBay magic. He doesn’t want to touch inventory and wanted to build something scalable. At its heart, Poshmark is mostly a software play. That’s fitting since it’s one of the relatively few serious ecommerce plays coming out of Silicon Valley. This wave of ecommerce 2.0 has been dominated by companies in New York and Los Angeles, which makes sense given the content and celebrity marketing angels this time around.

Chandra says if Fab.com is aggressively gunning to be the new — more stylish– Amazon.com with massive, varied inventory and a gorgeous front-end; he’s gunning to be the new eBay. (Only unlike eBay he’d like a gorgeous Amazon-like customer experience too. I mean, no one seeks to replicate eBay’s UI.)

The analogy fits to a point: Fab has raised hundreds of millions in capital and is losing money on most orders. Poshmark makes money because of this eBay like model. It has a lean 20-something employees and no angst over whether or not to drop-ship and how to build out warehouses. (And Etsy, too, is gunning to be the modern eBay, although by tapping into a totally different set of passions.)

It’s not an accident Poshmark raised this round from Menlo Ventures– also the investors in Fab and one of the best companies to exploit mobile commerce to date, Uber.

From the consumer point of view, Poshmark works similarly to how you’d expect a modern eBay to work. Women upload pictures and descriptions of things in their closets. They sell them– for a fixed price, unlike eBay. Poshmark emails them a shipping label, they print and affix to a basic post office box. Poshmark tracks the purchase and knows when it arrives, at which point the recipient acknowledges the acceptance and the funds are released to the seller. Returns work much the same way, but in reverse. iPhones allow the barriers to uploading and shopping to become so dramatically reduced from the Web first days, someone has to be able to build a big business here.

There are a few key differences. Poshmark controls the shipping process more carefully, and the advent of mobile makes the uploading and shopping experience dramatically different. Chandra knew image capture would be a crucial part of encouraging emotion and community on the platform, and he struggled over the most cost effective way to make sure millions of women throughout the world could take great photos of their stuff.

The second he saw Instagram, he knew it wasn’t an issue any longer. Where uploading a photo to an eBay listing was something only power-sellers did, the average Poshmark user is creating magazine line displays of their items intuitively from their phones. Think of espadrilles dangling from a beach chair in front of  the ocean, or a lookbook-like display laid out on a white carpet of how this hat could be styled. And women are consuming Poshmark on their phones as well, making it easy to instant shop hot closets from anywhere.

The curation angle– after all, every ecommerce 2.0 startup has one– is similarly user-generated. It comes in the form of Poshparties. There are three of these a day: In the morning, they are themed around designers in the mornings, categories of goods in the afternoon and trends in the evening. (Think, Diane Von Furstenberg, handbags and leopard prints as examples.) Women upload or repurpose existing listings that fit within the themes, and other women raid their closets in real time. A lot of those two million monthly likes and comments show that rage, exasperation, jealousy, and thrill of the hunt. The evening Poshparties have 30,000-40,000 items on average.

They’ve thrown a few physical Poshparties where women gush about the app. There are the stories of women who’ve quit the jobs to sell on Poshmark full time, women who no longer go to the mall, women whose boyfriends are jealous because all they do is talk about Poshmark. All good signs, but again macro user numbers would be nice to indicate how broad the passion goes, not just how deep. Nearly every app has its hardcore fans.

The biggest difference from eBay is that Poshmark has no desire to make fashion a mere “vertical.” Fashion is everything for the company. It’s another concept that Chandra says he has a hard time explaining to many of his “male investors.”

He points out that fashion is a $300 billion market in the US and more than $1 trillion globally and that the richest men in Sweden, Spain, France and Japan are all in fashion. Three of those– the founders of H&M, Zara and Uniqlo– have all done it in the churn and burn, fast retail space. Those stores are essentially a flash sale in physical retail locations, and have so far done far better than the flash sale equivalents online, no matter the Web’s supposed superior economics and reach. Score one for the revenge of brick and mortar. (The fourth isLVMH’s founder.)

Of the top ten richest men in the world, three are in fashion– the kingpins of those three discount dealers. Only two are in technology– Bill Gates and Larry Ellison. One is in telecom. One is in real estate one is in oil and gas, and one is in the grocery store business. Chandra’s point: There’s plenty of cash in fashion, and that’s where the community, intensity and emotion of a online social network is as well.

With numbers like that, you can see why he’s captivated with his wife’s closet.

But his conviction to build Poshmark into a big company goes beyond flipping through a copy of the Forbes billionaire list. Chandra’s previous company Kaboodlesold to Hearst in  2007 for some $30 million. It was a social shopping site and in many ways an early progenitor to a lot of the things that Pinterest does today– it had some of the very same early boards as Pinterest. One of the reasons Chandra sold is that he just couldn’t see how it became a much bigger company.

When he first met with Pinterest’s Ben Silbermann, it was clear that Silbermann got what he hadn’t. Forehead slapping moment. Double forehead slapping moment, because Chandra was bound by a non-compete and couldn’t even advise or invest when he saw it the second time. He’s since become convinced that anything that’s a good business has the potential to be a $100 billion business.

This time he sees it, and he’s not settling for $30 million