Oregon Baseball and the fight against Lupus

My family at Oregon's PK Park

My family at Oregon’s PK Park

Tonight at 7pm the Oregon Ducks will take on UCLA in not only a huge PAC12 series but the first ever Lupus Awareness Night hosted by the University of Oregon baseball team.  My brother Jeff or “Bucky” as I’ve always called him “pitched” the idea to the baseball operations manager who got the ball rolling. Tonight my baby brother will throw out an honorary first pitch (he’s not scheduled to start) and deliver a short pre-game speech with my dad. There will be raffles, donation buckets, and a lupus information table manned by the lovely ladies of the Pacific Northwest Chapter of the Lupus Foundation.

Wednesday evening The Oregonian published a story on Bucky and me. Read it here! I had a 15 minute phone call with the reporter who then spoke with Bucky later that afternoon. Now yes if you read the article you will definitely get that my brother marches to his own “beat.” But, what surprised me is the fact that he knows how sick I can be.

That's him on the right...just a little wacky

That’s him on the right…just a little wacky

When I was first diagnosed Bucky was only 12. Then I promptly left for college and didn’t return until three summers later. I was very ill that summer, unable to get out of bed most days with rounds of tests at the hospital. But, he was still a kid, running around town with his friends without a care in the world. After graduate school I moved home, Bucky’s senior year of high school. That year he did a project on lupus for his health class. He and his two friends interviewed me. It wasn’t until I explained my daily pains, lack of energy, and organ complications that he started to understand.

I don’t want to say my brother is selfish because he’s not. But, he comes across as very carefree. I took that carefree attitude as a lack of empathy. This article proved me wrong. Bucky may brush me off when I ask about the speech “I got it, yah whatever” but my dad told me he’s been practicing what he’s going to say. He’s acknowledging my fight to his teammates and the local reporters. He even got every guy on the Oregon baseball team to donate a few bucks to the Lupus Walk. The Oregonian article was posted to his Facebook page by his non-baseball friends and received hundreds of likes.

I wish so badly I could be in Eugene tonight to join my family. It’s been a year since I’ve seen Bucky and this week makes me miss him terribly. I couldn’t be happier than he’s helping bring awareness to lupus and encouraging others to do the same. I love you Buck.IMG_0033

If you’re in the Eugene area please head out to PK Park tonight (Friday April 19th) as the Ducks host UCLA. Get there early for the acknowledgement of Lupus Awareness Night.

 

My first time as a guest blogger

Sorry I’ve been MIA, it’s been absolutely crazy at work. I had finally started to feel better, probably about 80% or so, and then a week of working 12 hour days, on my feet, and no time off took its toll. 3 steps forward, 2 steps back.

While I was away I had a guest blog on The Patient Patient regarding the many questions we must face when working with a chronic illness. Hope you check it out, while I dream of starting my workday like the picture below.

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New Juicing Recipes

I thought I’d share some new juicing recipes, perfect for the warm summer weather.

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I created the Morning Burst to try to get some more Vitamin C and hopefully prevent any allergies/sniffles from progressing into a full blown sinus problem. It was a great kick first thing in the morning.

For the Thirst Quencher I added water based cucumber and watermelon, then poured in some coconut water. I’m not a fan of coconut water, frankly I hate the taste but this C2O brand is the least repulsive I’ve found. (I only seem to find it at Whole Foods, not Publix or Kroger) Since I only added a little bit of coconut water to my drink, it was very refreshing. I think this may be a summer afternoon staple.

Ways to be happier at work

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Inc. had a wonderful post, entitled 17 Ways to Be Happier at Work. While this list was written for the normal workers, I think many can be applied and more deeply discussed by those of us working with chronic illnesses. Here are just a few of Inc’s tips that spoke to me:

1. Don’t compare yourself to others. Everybody, and I mean everybody, starts out in a different place and is headed on their own journey. You have NO idea where someone else’s journey might lead them, so drawing comparisons is a complete waste of time.

Those of us with a chronic illness are different from the normal worker. We take more sick days, we may move slower, forget more, etc. Do not compare yourself to your colleague who works 12 hour days, or the colleague who travels 3 days a week. As long as you are getting your work done on time and/or on budget you don’t need to compare yourself. I can’t travel like the rest of my colleagues who can jet off to Detroit or Austin on an hour’s notice. But, I can make sure all the back end work at the office is complete and organized. As long as you are doing your job to the best of your abilities do not compare your work style to others.

2. Never obsess over things you cannot control. While it’s often important to know about other things–like the economy, the markets that you sell to, the actions that others might take, your focus should remain on what you actually control, which is 1) your own thoughts and 2) your own actions.

This one is huge for me. I can’t control what a client throws my way, or if an event I’ve planned goes awry in the field. But, I can control how I react when things go wrong. Lupus is aggravated by stress, so it is important not to stress about things I can’t control.

3. Know and keep your personal limits and boundaries. While your job might sometimes seem like the most important thing in your world, you’re killing a part of yourself if you let work situations push you into places that violate your privacy and your integrity.

While Inc. describes this tip in regards to workplace ethics, I think about it in regards to time. I’ve made a New Year’s resolution to keep work at work. If a situation is immediate, most colleagues will call; which means not checking my work email while away from work. I know this is hard in the world of Blackberries/ iPhones, where the lines between work and personal life have become blurred. But, in order to control my stress levels as discussed above, I must keep work and personal separate. Bonus: this means I can give my full attention to my loved ones or my health when I’m not at work.

4. Don’t over commit yourself or your team. It’s great to be enthusiastic and willing to go the “extra mile,” but making promises that you (or your team) can’t reasonably keep is simply a way to create failure and disappointment.

Again, back to managing the stress levels. You want to seem like to go-getter, the over-achiever. I know because I am that person, despite my limitations. But, when you only have so many spoons in a day it is best to avoid over-committing.

9. Make peace with your past lest it create your future. Focusing on past mistakes or wrongs inflicted on you is exactly like driving a car while looking in the rear view mirror. You’ll keep heading in the same direction until you collide with something solid.

I think of this tip in big picture terms. For years I had a dream of becoming a sideline reporter for ESPN. I worked toward that dream covering two BCS National Championships, MLB playoffs, the Little League World Series. But I couldn’t keep up. Lupus wouldn’t let me continue to run ragged, work a month without a day off, or carry a 40 lb. camera while running up and down a football field. Yes, I never made it to ESPN, but I lived my dream. I did the same job, if not more, than the other sideline reporters, and I got to cover some really cool sporting events. I can’t look back on my career change and be bitter that I didn’t make it to the top. I have to make peace with the fact that my new career allows for a lunch break, a chance to sit down, and the ability to turn work off. In the end that’s better for my health and psyche than completely fulfilling my dream.

It is enough

EffectivenessInTheRightJungleFrom 7 Habits of Highly Effective People via Jess Lively

How fitting is this quote for us lupus patients? How often do we feel guilty for not being physically able to do enough? I feel guilty if I don’t cook dinner after a long workday, or if I let the laundry pile up an extra few days, or if I spend a Saturday napping instead of enjoying the sunshine. That guilt of not doing enough, the guilt of feeling lazy even if I am extremely fatigued.

But, this quote is a gentle reminder that we as lupus patients don’t have to do it all. If going to work is enough of an effort, then it’s enough. There are only so many spoons and hours in a day. As long as we put the energy into the absolute most important thing that day then the rest doesn’t matter. It’s enough.

A new way to think about lupus

Last weekend I attended the Lupus Foundation’s Lupus 101 seminar at Piedmont Hospital in Atlanta. While I’ve had lupus for 10 years and am well versed in the ins and outs of the disease, I wanted to take Sean to further his understanding and thought it wouldn’t hurt to hear another doctor’s perspective. Rheumatologist Dr. Gary Myerson was the speaker and he was brilliant!

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Dr. Myerson explained lupus as follows: Your immune system is a big game of cowboys and indians. The cowboys are protecting the fort (your organs) and instead of attacking the indians (foreign invaders/viruses/bacteria) the cowboys get confused and attack each other. How simple is that?!?! I think for people who don’t understand the disease it is a wonderful analogy.

After a battle (flare) there’s a big messy battle field; dead cowboys, dead indians, dead horses, a burning fort. You know the scene from the movies.

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But what no one ever tells you is who cleans up the mess. In your body, it’s the compliments or C3 and C4 as us lupus patients know them by. If your C3 and C4 levels are low that means there are too many battles, too many attacks and your body can’t clean up the mess fast enough. C3 and C4 are the measure of your disease activity.

I have always known what lupus is, what the symptoms are, what to look for in my blood work. I always knew what, but I never knew why. Dr. Myerson told me why. Thank you so much to the ladies at the Georgia Chapter of the Lupus Foundation for seminars like this one. They are so incredibly valuable.

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Chronic Conditions in the UK

Today is a guest post from the lovely Anya of The Patient Patient. Anya and I connected on Twitter and have been sharing our experiences living with chronic illness ever since. On Monday I posted my review of Escape Fire, the documentary about our broken healthcare system in America. I thought it would be great to take a look at living with a chronic illness in the UK where they have, as we American’s call it, “socialized medicine.” What shocked me is that Anya only gets to see her specialists once per year! When you read the below post and anatomy of a doctor’s visit post, you may ask yourself “is the grass greener on the other side?”

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Hello from across the pond! It is a privilege to have been invited by Kristin to do a guest post for Working Lupie. We connected about a post I had written on my blog, The Patient Patient about the emotional roller coaster of medical appointments. A few tweets later and we realized there were many similarities and some pretty big differences between healthcare systems in the UK and America!

Being chronically ill is a stressful experience wherever you live, but some of theses stresses differ with different countries and how healthcare is or isn’t provided. This is what it’s like in the UK, with the NHS. Ignoring all of the complex legal and organisational structures, I want to focus on what the NHS means for patients like me using it!

I live on the south coast, and have a local General Practitioner (family doctor in primary care) who I can see as often as I like. He is lovely, but because my conditions are rare, he can not offer much help with managing them. I tend to see him once a month or once every two months. I can get repeat prescriptions and some referrals with him.

My secondary care is provided by a consultant at a hospital in London,  because my conditions are rare and that is the place where the specialists are. I see him once a year (although don’t always see him, often another doctor in his team!) for around 40mins. That is because he is so busy and there are so many patients wanting to see him. I also personally feel that there is not that much they can do my way of treatment etc. so perhaps that has something to do with it too. Although I am on some medication, it doesn’t (apparently!) need that close monitoring!

Thorough this hospital I was supposed to get access to a specialist nurse, someone who I could call during a relapse, but I have had a lot of difficulties in getting this. The hospital is very busy, short of admin staff and she is one of only a handful of specialist nurses in the country for POTS (postural Orthostatic tachycardia syndrome). I have a wonderful physio who I see every two months or so and a Counsellor who I used to see weekly, and now have ‘top-ups’ when needed. This is all through the NHS.

Please note – this is just my experience! I also have 3 rare and complex conditions (EDS, POTS and a Chiari malformation), which does make things harder. I can’t put into words how grateful I feel to have the NHS, and despite the challenges I have described above, have been, on occasions, moved by the excellent of the NHS. I pay taxes, and apart from one private appointment, I have not had to pay directly for any of the care I have received.

So what do I do in the intervening days, all 360 of them?! Self-manage! I have completed the Expert Patient Programme, a course on self-management (I think it originally came from Stanford!) which helps me pace my self and importantly manage the emotional and psychological side effects of my physical health conditions. That has given me the confidence I need to be independent day in day out. It has also given me the opportunity to manage the frustration of delayed referrals, not getting hospital letters delivered and the full-time job it seems to be just managing the admin of being a patient!

There are charities that help too – particularly the Brain and Spine Foundation which has a great helpline manned by nurses. If I have a particularly bad relapse, there is always A&E (emergency room), where I can go for scans and treatment if needed. Although that said, my conditions are stable at the moment, and I am able to sit relapses out in the comfort of my own home. I haven’t had to be an inpatient in hospital since December 2011.

There are clearly some differences, but I bet my bottom dollar or pound(!) we all find it a full time job managing the admin, before we even start to thing about coping with the symptoms. We have all been frustrated with delays, over-defensive secretaries and unsatisfactory appointments. While the differences in our healthcare systems are significant, I don’t think they are insurmountable or mean that as patients we can’t join forces across the Atlantic to learn and support each other. The workings (or not workings, as the case may be!) of our nervous systems and immune systems are the same and we are all crippled by such similar symptoms: pain and fatigue. Let us not forgot that powerful overlap when discussing the systems!

Thanks for the opportunity to blog here, and do keep in touch!

Anya – @anyadei

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Escape Fire

Did any of you watch Escape Fire on CNN last night? Here’s the synopsis from the documentary filmmakers:

American healthcare costs are rising so rapidly that they could reach $4.2 trillion annually, roughly 20% of our gross domestic product, within ten years. We spend $300 billion a year on pharmaceutical drugs––almost as much as the rest of the world combined. We pay more, yet our health outcomes are worse. About 65% of Americans are overweight and almost 75% of healthcare costs are spent on preventable diseases that are the major causes of disability and death in our society.

It’s not surprising that healthcare tops many Americans’ concerns and is at the center of a political firestorm in our nation’s Capitol. But the current battle over cost and access does not ultimately address the root of the problem: we have a disease-care system, not a healthcare system.

ESCAPE FIRE examines the powerful forces maintaining the status quo, a medical industry designed for quick fixes rather than prevention, for profit-driven care rather than patient-driven care. After decades of resistance, a movement to bring innovative high-touch, low-cost methods of prevention and healing into our high-tech, costly system is finally gaining ground. Award-winning filmmakers Matthew Heineman and Susan Froemke follow dramatic human stories as well as leaders fighting to transform healthcare at the highest levels of medicine, industry, government, and even the US military. ESCAPE FIRE is about finding a way out. It’s about saving the health of a nation.

ESCAPE FIRE: The Fight to Rescue American Healthcare (Trailer) from Our Time Projects on Vimeo.

The documentary followed, among others, a primary care doctor in her fight to spend more time with patients, Dr. Andrew Weil and his integrative medicine fellowship encouraging doctors to treat the root cause of the disease rather than treat the symptoms, Dr. Dean Ornish’s fight to get Medicare reimbursements for lifestyle treatment for heart disease, and Dr. Steven Nissen’s argument that doctors should be salaried instead of paid to perform, as many in the current system are.

The biggest issue Escape Fire brought to attention was the pay to treat model. Doctors in Escape Fire said they would be reimbursed at $15 per office visit if they simply talked a patient through their treatment plan. If they performed a procedure or gave a certain pharmaceutical, they would be reimbursed at a rate of over $1,000. The American Healthcare system is rewarded for managing symptoms instead of curing disease.

This is my frustration with my current doctors medicating my symptoms and not doing enough to find the root cause of the problem. When I ask questions about a root cause, I’m met with resistance and a prescription for another new drug. In my opinion this pay to perform model and reimbursement methods are why the American Healthcare system is broken.

On that same note, doctors are reimbursed for the number of patients they see. Dr. Erin Martin, the primary care doctor featured in the film, described primary care as a revolving door: see 30 patients in an hour, as directed by the business administrators to be reimbursed at a higher rate. I know this happens for a fact in the medical practices where I live. Spending more time with patients and therefore seeing fewer, means less money for the doctors.

What I loved about the film was the feature on the military’s new acupuncture and holistic practices for pain management. They showed soldiers returning from Afghanistan treating their war injuries with bags of narcotics. Escape Fire showed these prescription addicts find more relief with acupuncture and meditation. The argument was the route of military medicine is the future route of the country. I’d love to believe that, but I just can’t.

As Olivia wrote in her blog Turning Poison into Medicine, her rheumatologist dismissed her acupuncture treatments as a “placebo effect.” Why would western doctors do this when studies show that acupuncture is proven effective in the treatment of many diseases? Because acupuncture doesn’t make anyone any money! Acupuncture is not covered any insurance I’ve ever had, and I’ve dealt with many different insurance companies in the last five years. I think Olivia demonstrates this by explaining “I kid you not, he spent four hours with me.  Contrast this with the 15 minutes I have with my rheumatologist every three months, where the whole time I feel rushed because I know he has several other patients who have also waited three months to see him.” Again an example of the pay to perform model.

The American Healthcare system is badly broken. Until we discourage the cut-throat medical school competition of picking a specialty and stop rewarding doctors for prescribing drugs and scans and lab tests, our people will not get better and not afford their care. Escape Fire did focus on Dr. Weil and Dr. Ornish’s natural treatment plans in eliminating a vast majority of chronic illnesses. I believe this is true for many, not for all. But, if we eliminate the need to medicate patients with preventable diseases we have more time to care for those who truly are sick and need care.

Stop Comparing

Remember when I said I hate cancer? I still do, but today I read a blog featured on the Lupus Foundation of America’s website that reminded me not to compare lupus to cancer. It’s not easy but it’s a gentle reminder that lupus awareness has come a long way since I was first diagnosed and even since I was at my worst six years ago. I needed to read this. I need to remember that some people do care and there are plenty out there not only fighting this disease but fighting to bring awareness. It may take me awhile to stop comparing lupus to cancer, but one day I’ll get there. Keep reading for an excerpt of Amy E. Kelly-Yalden’s blog :

Shift – to move or cause to move from one place to another.

I have had the privilege to be a Co-Founder and Executive Director of one of the largest cancer organizations in the world. In a little over a decade I was able to play a part and witness a complete shift in the disease – from awareness to increased screening rates to the approval of just one to over a dozen treatment options.

In the last two years since I have been with the Lupus Foundation of America, I have seen and felt a similar shift in lupus. Can you? We are moving this disease from a place of little to no awareness, no drug ever specifically developed to treat it, and support and services that were lacking, to buildings being lit purple, buses touring the country as part of the Help Us Solve the Cruel Mystery™ National Tour, new treatment options being approved, more programs and services being offered, and more than two dozen companies studying potential new treatments for lupus.

We have branded the disease as the cruel mystery, and we have issued a call to action by asking people to help us solve it. This disease is cruel and it is a mystery. There is no cure. It looks different in everyone. There is no clear path. There is no end. The public doesn’t understand it, causing a lack of empathy. My sister was receiving the same treatment regimen at one time that my grandmother was receiving for cancer. My grandmother’s friends and neighbors brought food, offered rides, and sent cards and flowers. No one did that for Erin. After all, it was “just” lupus.

Every day, hundreds of people hard at work at the Lupus Foundation of America and in its network of chapters, and ambassadors across the country are working to change that mentality and shift the course of this disease. We will not accept inaction. Neither should you. It will take each and every one of you raising your voices and asking your friends, family, and colleagues to help us solve the cruel mystery of lupus.

A pink ribbon is not a unit of measure 

I have heard many people in my nonprofit career get frustrated at the “pink ribbon parade.” I implore you to not compare our progress to the breast cancer movement. Every disease wants that type of awareness. I have seen too many get caught up in that comparison. Every disease is vying for an athlete to wear its color, a yogurt lid to have its symbol, and 30,000 people to show up for a walk.

Let us celebrate our progress by measuring where we have come from, rather than making the pink ribbon the unit of measure. For me, I measure it in the four years since my sister died. Since then we have had the first drug specifically developed for lupus approved and more drugs in the pipeline than ever before, funded research that is helping diagnose the disease and track its progression and activity, branded the disease to help the public understand it better, funded the first-ever pediatric lupus research program, lit up landmarks across the country purple, held walks uniting thousands in each community, created programs and services that help people living with the disease live better, and formed the first ever Congressional Lupus Caucus, to name just a few.

The roar of 1.5 million people and their loved ones is much louder than a few
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There are plenty of ways to get involved and make what we do now bigger and better. I urge you to come out to walk and to a seminar, sign the cruel mystery petition or visit the tour bus if it is making a stop in your town, join us on Capitol Hill in June, celebrate Lupus Awareness Month in May, get involved with your local chapter, or simply share your story. Ask those who know you to play a part and help us solve the cruel mystery.

I guarantee you that if each and every one of you reading this does more than you did yesterday, a year from now we will be adding much more to our list of successes — a lot less people will feel alone with this disease, the general public will no longer need an explanation of lupus, lupus research will see increased funding and we will be enjoying our own purple parade in honor of all those living with lupus and in memory of those we have lost.

And one day…this disease won’t be as cruel or mysterious.

Amy E. Kelly-Yalden is President and CEO of the Lupus Foundation of America’s Southeast Florida Chapter

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The latest hospital stay

I spent part of last week in the hospital. I’m not going to go into graphic detail but a failed procedure prep left me in a lot of pain. I entered the ER on Monday evening after the suggestion of the on-call physician. I was admitted after midnight and spent the next two days hooked up to IVs, on medications I can’t pronounce, but I had few answers.

What is more frustrating is the doctors still have few answers. I’m still a guinea pig for medication; try this, now take that, add this. I’ve done everything the doctors have said and I’m still sick. I cannot express that enough to the doctors and nurses who have treated me. I follow doctor’s orders to a T. I don’t eat fast food or junk food or gluten or added/processed sugars. Honestly! But the “treatment plan” is always “avoid white foods, take this medication (and this one and this one) twice a day.” I got that part, but what is causing this problem?

I get my biopsy results back this week and have two different doctor’s appointments. I can no longer leave with an ambiguous answer. I cannot end up in the hospital again.