There is no “Miracle”

Thought I’d share Chronic Rant’s most recent post about a novel she just read.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after…..If only right?

Thanks Chronic Rants for saying out loud what all of us wish we could say to anyone who asks “aren’t you better yet?” Head on over and read the full post. It’s great.

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.

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.

How to get Social Security Disability

We’ve all had those “lupie” days where we can’t get out of bed no matter how hard we try. We’ve all missed too much work or missed an important deadline because of lupus. I fear the day I can’t work for an extended period of time or lose my health insurance.

This weekend I had the pleasure of listening to disability attorney Winnie Pannell speak to our Lupus Support Group. I’ve met Winnie before and she is a hoot. Saturday’s topic was more serious: how to go about receiving Social Security Disability.

Before you can even think about applying, make sure you have paid into Social Security (or its official name: FICA) for 5 years or 20 quarters out of the past 10 years. If you are self-employed or a contractor, the amount of income you earn can translate into required quarters.

There are two types of Social Security Disability. DIB and SSI.

DIB: Monthly benefits will start after the fifth month of disability and will receive Medicare which will start after 29 months (5 month waiting period, plus 24 months on DIB).

  • you must prove you became disabled before your FICA eligibility runs out.
  • you will not receive more than 12 months of previous benefits. It is important to file as soon as you lose your job or become disabled as your benefits will only be retroactive 12 months before you filing date.
  • COBRA benefits from your former employer last 18 months. If you receive Social Security you are eligible to extend COBRA an extra 11 months to bridge the 29 month gap before Medicare kicks in.

SSI: As Winnie explains in the video, most of the time the Social Security process has drained a person’s assets so that, excluding their house and their car, they have less than the required amount in savings. SSI beneficiaries will receive Medicaid.

The application is pretty complicated but you can complete it online. You can’t just say “I’m sick and can’t work” you have to prove it. Thus the importance of keeping detailed records:

  • Ask for copies of all doctors notes, including the date and time of your visit as well as what was discussed.
  • Take your own notes to the doctor, listing your symptoms, pain rates and dates. Not only does this help your Social Security case but also gives your doctor an easy reference of your symptoms to better assist in your care.
  • Dates you missed work and any notices from work regarding your absence or tardiness.
  • Photographs of physical manifestations of lupus. Rashes, hair loss, jaundice, swelling, etc. You may not feel like having your picture taken, but it is critical to show how bad it can get compared to healthy pictures of you.
  • A journal of your symptoms or your feelings each day. Miss a dinner with friends because you were in bed? Write it down. Can’t cook and order in? Write it down.
  • Letters from loved ones detailing how you used to be. Did you used to be an athlete and now you can’t walk the dog? Have your spouse or loved one describe that. Often it’s more powerful coming from someone else.
  • Document the date, time, and name of everyone you speak with regarding your Social Security case.
  • Get a certified mail receipt for everything you send the Social Security office.
  • Make copies of everything you send the Social Security office.

It is important to note, 74% of all Social Security claims are denied and 84% of appeals are denied as well. Don’t give up. After the appeal is denied, you have 60 days to request a hearing. It is only at this point in the process you are required to have a lawyer. During the hearing you must answer five questions:

  1. Are you working? If yes, then your case is dismissed.
  2. Do you have a severe impairment that will last more than a year or result in death? Yes, there is no cure for lupus.
  3. Is the condition “listed” in the CFR or of equal severity? The listing for lupus means you must have involvement of two or more organs, one of which is moderate to severe involvement, and you must have two of the following: severe fatigue, fever, malaise or involuntary weight loss. Or, you must show repeated symptoms of lupus with at least two of the following: limits in daily living activities, limits in maintaining social functioning, or limits in completing tasks in a timely manner due to deficiencies in concentration, persistence and pace.
  4. Does the condition prevent former employment? Can you go back to any job you held in the last 15 years? If yes, then your case is dismissed.
  5. Does the condition prevent other gainful employment? Must answer no to get Social Security.

For question 4 and 5, most experts will say you are not employable if you miss 2 or more days of work per month. It is important to prove in the hearing that you cannot work due to increased absence, the unpredictability of lupus, the lupus fog, and depression from lupus or mood swings from medicinal side effects. All of this goes back to the importance of medical records.

Getting Social Security Disability does not mean you’ll be a “freeloader” forever. Frankly I don’t think you’ll be freeloading at all, you pay into the system, it is there if you need it. But, the majority of people want to work. There is a trial work period which is 9 non-consecutive months to test the waters. If you earn more than $1,040 per month (minus medical expenses) then you are deemed employable again and are no longer disabled.

In most cases, if you have not medically improved, but are able to return to some form of work, Medicare benefits will continue for at least 93 months. These 93 months will start the month after the last month of your trial work period. While your Social Security cash benefits will cease, you will still be covered under Medicare insurance.

If you can work, there are plenty of things your employer can do to make work easier. Now this all depends on how you breach the subject with your employer, but larger companies are often more apt to work with you than smaller ones.

  • Placing a filter over bright lights
  • Utilizing voice activation software to type
  • Working from home
  • Rest periods throughout the day

Of course, every employer differs and some may be more empathetic and compassionate than others. It is best to look up your employers’ policy as well as having a doctors note when making any requests.

If you would like to apply for Social Security you can now do so online: www.ssa.gov/applyfordisability.

If you’re in Georgia and would like more help from Winnie and her office you can find more info at lupuslaw.info.

When a cleanse doesn’t work

Disclaimer: I’ve been saying I’ll outline my current health issues but have yet to do so because I’m afraid of the sensitive nature of this post. GI issues are often embarrassing and uncomfortable. I will try not to be too graphic for your sake and for mine, but if you’d rather not hear about go ahead and skip this post.

As January came to a close I saw a bunch of friends successfully finish the #Whole30 which consisted of a month of whole eating, or essentially the paleo diet. Other friends completed their New Year’s detox programs, 21 days of no alcohol, no caffeine, clean eating plus some supplements. They all raved about their bodies. Yes, they lost some weight, but more importantly they felt better, had more energy, clearer skin, fixed many nagging health problems.

I am not going to outline these programs for you. I’m not going to sell you on some miracle diet. You may say “well they worked, why don’t you try this? Maybe you’ll feel better.” Problem is, I live that way every day and I’m still sick.

I read the Kris Carr book detailing her curing her cancer with diet. I am constantly checking websites like The Whole Journey or following my friend Evelyne’s San Diego Health Coach Facebook page. I don’t eat red meat, gluten, or mass amounts of sugar. I don’t drink soda, limit my dairy intake and I haven’t had a cup of coffee in months. I use coconut oil or applesauce instead of unhealthy oils when cooking. I juice or make a green monster every morning. I haven’t eaten fast food since one Chick-fil-a breakfast pre-UGA game in November. I follow the 80-20 rule (perfect 80% of the time with little room for indulgences). I follow the rules. I’ve eliminated the bad stuff from my diet. Yet, I’m still sick.

For months I’ve had trouble keeping down food. Homemade squash and carrot soup has made my stomach churn and I’ve even vomited apples (literally, all I had one morning was an apple before I went to the store and I threw it up in the parking lot). The only things I consistently keep down are my green juice and plain oatmeal. I had celery with organic peanut butter and a few strawberries for lunch and within an hour was sick. Fruits and vegetables are making me sick!

I started by seeing my primary care doctor, thinking maybe my B12 deficiency was the root cause. Nope, I’ve been taking B12 shots for months now so that’s not it. Next the doctor pressed on my stomach and I felt the aching pain everywhere.

Next, I took a trip to the GI specialists. Blood work found I don’t have celiac (but that doesn’t show if there are gluten sensitivities present). They did an ultrasound on my upper and lower abdomen; nothing abnormal. Then, I had a HIDA scan to test the function of my gallbladder; 69%; not good, but not bad enough to warrant surgery any time soon. The next round of tests includes an upper endoscopy and a colonoscopy. So I sit and I wait. I wait for the test results, wait for the doctor to call me, wait for scheduling to call to make the appointment for the next test, wait in pain.

Part of me wants to say “Screw it!” and eat what I want. If I’m going to throw up I may as well indulge. But, the smarter part of me says continue to juice and follow the rules. Keep trudging along. Even if following the rules isn’t “curing” me now, I know it can’t hurt.

Day 12- You have lupus. Now what?

Today is day 12 of National Health Blog Month from Wego Health. Today’s topic: From the bonus prompts list, Advice for newly diagnosed patients.

February 2003 – I woke up in the middle of the night with sharp pains shooting down my left leg. I took some advil, angry that I was up an hour earlier than my 4:30am wake up call for swim practice.

March-May 2003 – Doctors, doctors, and more doctors; poking and prodding, running test after test.

Late May 2003 – “You have lupus”

After that – “eh whatever”

That’s how it went down ten years ago. I know I’m lucky compared to most lupus patients; my diagnosis took mere months rather than years. Ten years ago I didn’t know what it meant to have lupus. Ten years later I still have questions but I wish I would have given them credence a decade ago.

In joining the Georgia Chapter of the Lupus Foundation of America, I met 17 year old Natalie Bates. Natalie was diagnosed at age 12 and last year raised more than $5,000 for the Lupus Foundation. At 17 I was definitely not as self-aware or involved as Natalie.

Natalie Bates (on the left) is only 17 and doing amazing things for the lupus community. (Picture courtesy of LFA Georgia Chapter)

What would I tell my 17 year old self, or any newly diagnosed patient?

Find a support group- Having people who understand EXACTLY what you’re going through really helps. Friends can give support but only those with lupus truly understand and can offer useful advice.

Martha Stewart makes pretty binders for Staples that make organizing your health easy.

Create a “lupus binder”- The joys of being organized. Mine has sections for my rheumatologist and nephrologist as well as a section of notes from my original diagnosis (I had to have a copy of these to take to college). The front section houses my blood work results (yes every copy of every time I’ve had blood drawn). In the front pocket is a list of current medications. Back pocket houses family history, hospital stays, and immunization records. I present this binder to new doctors to review my lupus history and can track changes on my own. But, that brings me to my next piece of advice…

Don’t get yourself in a tizzy over your blood work- My nephrologist laughed at me this spring “don’t look at your blood work without me!” He was right. In the WebMD world we all think we’re dying of something. Take the time to go over your labs with your doctor. I always look at my labs myself and make notes to what questions I have, but I don’t interpret the answers on my own. It’s a balance because it’s important to be an active patient and take control but I’ve scared myself many times jumping to conclusions and taking results out of context.

Don’t hide- The more people know, the more they can help. A lot of people won’t and don’t understand, but they definitely won’t unless you fill them in. It’s important to work with your boss (or professors). I was shocked last week when I informed my employer that travel was becoming increasingly difficult and I had to be taken off the road for the foreseeable future. They were very supportive and made arrangements so I could recover. Keeping them in the loop was the right choice.

Be selfish- Friends want you at their event but you’re not feeling well, don’t go. Your food allergies prevent you from eating at a certain restaurant, chose the one you can eat at. It’s that simple. Don’t force yourself to do what others want if you’re not feeling well. Go to sleep at 9pm if you want. Eat at a restaurant that works for you. Yes it sucks when others are out but in the long run it’s better to miss one party than be sick for a week. I’m guilty of not following this rule all the time but I’m getting better.