Patients Like Me

PLMTwitterThe diabetes world is familiar to me. I know where to get the latest information on research, which blogs cover certain topics, where to connect with others, and who to talk with to get a different perspective on daily management. It’s comfortable. It’s safe.

I’m a local.

I have been offered and gladly accepted a ticket to travel for the next year into another world… or worlds, as a member of the 2015-2016 Team of Patient Advisors for PatientsLikeMe. My exploration into other patient communities and what it means to be a partner will send me into unfamiliar territory. I have no map. I have no frame of reference.

I’m a foreigner.

But I have travel companions – my new partners. And that’s what this year’s Team of Advisors is all about. These partners are 13 incredible individuals who willingly share their data, their experiences, their strengths, and most importantly, stories of their journeys. We’ll be examining the definition of partnerships in healthcare, then creating resources and ways for partnerships to blossom between industry, researchers, health professionals, and patient communities.

What Is PatientsLikeMe?

PatientsLikeMe brought the team together to their Cambridge headquarters for an intense initial meeting. The founders, Jamie and Ben Haywood, began Patientslikeme to find a cure for ALS (their brother, Steven was diagnosed at 29.) When they talk about their brother and why PatientsLikeMe is important to them, the passion is palpable. Despite the fact that Steven passed away, Jamie still talked about him in the present tense in our meeting. (I’m not sure he even realized he did that.)

Here’s Ben, sharing the story of PatientsLikeMe at TEDxCambridge:

Not content with gathering research data for just ALS, the site now allows for tracking of thousands of conditions. Members can input their data and instantly update how they feel. Daily tracking for most conditions can help show trends that can be helpful in medication dosing. The forums for many conditions allow members to talk about what works for them and what doesn’t. For many chronic illnesses, the data shared can help researchers and companies provide better drugs, examine how clinical trials are run, and if  organizations are asking the right questions.

FDA and PatientsLikeMe

They’re collaborating. Yep. This makes me do a happy dance. Patient reported data is necessary. Aggregated patient reported data is sometimes hard to access. PLM (PatientsLikeMe is helping.) Here’s the gist:

PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management.

Where Do They Get The Money to Run PatientsLikeMe?

This is the reason why I love what they’re doing… they are firm believers in transparency. Straight from their website FAQ page (and easily found…):

We take the information patients like you share about your experience with the disease and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services.  Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.  We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data.

By selling this data and engaging our partners in conversations about patient needs, we’re helping them better understand the real world medical value of their products so they can improve them. We are also helping companies accelerate the development of new solutions for patients.

PatientsLikeMe is a for-profit company (with a not-just-for-profit attitude).  Every partnership we develop must bring us closer to aligning patient and industry interests. Our end goal is improved patient care and quality of life.

All too often, we question motives in healthcare. (How many times have you heard: “There will never be a cure for diabetes because there’s too much money being earned by companies treating it…”?) By openly sharing their intent and not hiding, I want to help. So I am.

Who is on the Patient Team of Advisors?

Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.
Back row (left to right): Doug, David, Jeff, Craig, Allison, Laura, Angela, Cyrena Front row (left to right): Patti, Peggy, Phyllis, John, Gus, and me.

Men and women from across the country with different life experiences, strengths, and conditions. ALS, MS, Type 1 diabetes (me!), Fibromyalgia, metastatic cancers, Parkinson’s, Bipolar II, Lupus, PTSD and depression conditions are being represented this year. We spent our time getting to know each other and learning about what makes us patients.

By the end of the meeting, our discussion was not about our individual diseases, but how we can work together to create better partnerships in the world. This big world of healthcare that encompasses much more than just patients. I’m ready to be more than a patient. I want to be a partner.

Postcards from Me

Expect to hear from me about my journey this year with PatientsLikeMe and the things I learn from my fellow team partners. Some of it will be fun – some of it won’t. But it’s important to step outside of your own comfortable space and explore. I’d love to hear from you about what you’d like to learn – so we can travel together.

People with diabetes know how to pack for a trip… so I’m ready. Off I go…

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Disclosure statement: My lodging and travel expenses were paid by PLM to get me to the kick-off meeting. This is a volunteer position and I am not paid to endorse or share information about PatientsLikeMe. My thoughts and words are, as always on this blog, my own.

Diabetes & Taxes

90376_1582Death, taxes… diabetes. We’re all certain that until there is a cure, we’ve definitely got diabetes and have to pay our taxes (at least in the United States). Don’t we already bleed enough?

When you have a very expensive chronic illness (hint: diabetes is a very expensive chronic illness), it pays to be prepared when it comes to doing your taxes and squeezing every dime out of your medical deduction. You need to begin the hunt for your expenses – and the receipts for those expenses.

Topic 502 of the IRS is all about Medical and Dental Expenses. We all need to know about this topic. Here’s the deal if you itemize your expenses on your 1040:

For years beginning after December 31, 2012, you may deduct only the amount of your total medical expenses that exceed 10% of your adjusted gross income or 7.5% if you or your spouse is 65 or older. The 7.5% limitation is a temporary exemption starting January 1, 2013 to December 31, 2016 for individuals age 65 and older and their spouses.

It Pays To Itemize

It pays to itemize. Seriously. Plain and simple: we spend a lot of our diabetes care, but we don’t think about all of the items. (And a lot of the time, we don’t keep the receipts…)

I’m telling you this: start now. Even if you didn’t keep the receipts from last year, start collecting. If you’re high tech, scan them in somewhere. Take a picture of your receipts and put them in a file on your computer. Heck, get a folder and put it next to your keys and put any receipts that can be included as medical/dental expenses into it. Find a system that works for you. But start now.

Ground Rules

I AM NOT A TAX PROFESSIONAL. Oh, please. I have a BA degree and a MSc. degree, neither of which is in accounting. You know (hopefully) by now how much I do not like math. I use a bolus calculator for a reason. I have wonderful friends who are CPAs. Do not look to me for tax advice. Do not look to me as the shining pillar of how to do taxes. I am many things, but I am not a tax professional nor am I perfect. (I am The Perfect D, but…)

I’m not giving you the entire list of what are considered acceptable deductible medical expenses. If you want the whole list, you can get it from the IRS website.

Here are the ground rules for what you can deduct:

  • You can only include the medical expenses you paid during the year and you can only use the expenses once on the return.
  • If you got reimbursed for any medical expenses, you must reduce the expense by the amount you were reimbursed.

For instance: You paid a doctor $120 for an appointment in May of 2014, sent the receipt into your insurance, and they sent you a check for $100 in December of 2014. You can then only claim $20 for this 2014 expense on your taxes, because you paid only $20 to see the doctor. 

What You Can Deduct If You Have Diabetes

Deductible diabetes medical expenses may include (but are not limited) to:

Your payments to your healthcare team: physicians, CDEs, nutritionists, dietitians, psychiatrists, psychologists, endocrinologists, nephrologists, podiatrists, cardiologists, physical therapists, chiropractors, and “non-traditional medical practitioners”, including acupuncture for smoking cessation, and massage therapists when used for a medical condition.

Your prescriptions/insulin. Anything that you have a prescription for, you can list as a medical expense. And… even if you don’t have a prescription for insulin, it’s still a medical expense that is covered. That includes your pump and all supplies. Your insulin pens and syringes and cartridges. If it helps you get the drug into your body, it’s a medical expense that can be deducted.

Your meter and blood glucose testing supplies. (These are diagnostic devices and therefore, covered. Same goes for your CGM and sensors. Ketone test strips (urine or blood).

291573_5192Your medical supplies. Yeah, you’re thinking, of course. But medical supplies include: alcohol swabs, IV Prep 3000, Band-Aids, etc.

Your eyeglasses or contact lenses. If you have contact lenses, you can deduct the cost of the enzyme cleaners and daily cleaning solutions. Don’t forget to include your eye exam, even if it was a refraction/non-dilated exam. That’s included.

Dental treatments at the dentist’s office, including cleanings and fillings. (You cannot expense floss, toothbrushes, or toothpaste.)

Your guide dog expenses, including grooming and food and vet fees. 

Your lab fees. Your ambulance fees or ER fees or hospital stay. All of it is covered. They’ll send you receipts. You’ll weep at seeing how much they charge.

Your lodging for medical care (up to $50 per person per night) (meals not included), if:

  1. The lodging is primarily for and essential to medical care.
  2. The medical care is provided by a doctor in a licensed hospital or in a medical care facility related to, or the equivalent of, a licensed hospital.
  3. The lodging is not lavish or extravagant under the circumstances.
  4. There is no significant element of personal pleasure, recreation, or vacation in the travel away from home.

Your cost of special dietary considerations (i.e. celiac disease – and you must click on that link and read this post from one of my favorite bloggers) or costs for participation in a weight-loss program after an obesity diagnosis) when prescribed by a doctor. Don’t try to deduct health club dues. Nope.

Your admission/registration costs AND travel expenses for a chronically ill person or spouse or a parent of a chronically ill kid to attend a medical conference to learn about new medical treatments. (You can’t deduct meals or lodging while attending the conference.) Hello? Friends for Life? AADE or ADA? Ahem. Deductible medical expenses. Holla. 

Your Electronic Health Records cost to keep all your data in one place. Also known as a “medical information plan” or a “personal electronic health record.”

1442111_98999959Your transportation costs to and from medical appointments/hospitals/medical centers. Don’t forget tolls, parking, gas, oil… Straight from the IRS:

Payments for transportation primarily for and essential to medical care that qualify as medical expenses, such as payments of the actual fare for a taxi, bus, train, ambulance, or for medical transportation by personal car, the amount of your actual out-of-pocket expenses such as for gas and oil, or the amount of the standard mileage rate for medical expenses, plus the cost of tolls and parking fees.

Some of your health insurance premiums. I’m not going to get into this one, as it’s a minefield of what you can and cannot deduct. You need to look at the IRS website on this particular subset.

What You Can’t Deduct

One of the things that I wish could be covered is hypoglycemia recovery supplies (i.e. glucose tabs, juice, etc.). I’m doing everything that I can to keep that cost to a minimum, but really… we all probably spend far too much on that, and it’s not reimbursable. (Not unless you have a prescription written by your doctor for “juice”…)

You can’t deduct the cost of the cell phone plans and minutes calling your insurance company to argue over what is covered and what isn’t.

You can’t medically deduct the cost of your Internet service plan for the time you spend getting peer to peer support online from the DOC.

You can’t deduct the over-the-counter salves and moisturizers to keep our pretty diabetic feet from cracking or drying out.

Hopefully I’ve triggered something in your brain that says: “I can deduct that?! Booya!” Start preparing now for the 2014 tax season. (I’m quite aware that U.S. taxes are not due until April 15th, but don’t wait until the 15th to think about all the items that you can add together for your medical expense deductions… you’ll get overwhelmed and you’ll inevitably miss something.)

Happy deduction hunting! 

 

 

 

DAM: Diabetes Symptoms

Main_symptoms_of_diabetesI knew that I had diabetes before I was officially diagnosed. Sitting in class, reading Time magazine, I came across a PSA print advertisement from, I believe, the American Diabetes Association. On a blackboard style background, bold, chalky white letters asked me to check off any diabetes symptoms I might have:

  • Excessive Thirst – A gallon of milk, seven glasses of water, and a jar of pickle juice one afternoon? I was always thirsty.
  • Frequent Urination – My teachers told me to stop raising my hand and “just go”. Hey, free hall pass. I’ll take it.
  • Blurred Vision – I thought I just needed new glasses. (I wanted new glasses. Mine were not fashionable.)
  • Dry Skin – I kept a small bottle of Clinique moisturizer in my pocket and slathered my face all the time. There was a dry patch that wouldn’t go away, no matter what I did to it.
  • Fatigue – Once a kid who bounced everywhere, I had begun napping after school. And on weekends. And on the bus.
  • Unexplained Weight Loss – 12 1/2 years old. 64 pounds at diagnosis. I looked gaunt.
  • Excessive Hunger – A yogurt and crackers for snack? No more. Clear the refrigerator.

I checked them all off in my head, but because I had no idea how serious and deadly untreated diabetes can be, I didn’t tell anyone. I assumed that it was something that was no big deal.

It’s a huge deal. I consider myself lucky. My blood glucose level was in the 400s when I was finally diagnosed. I was coherent and upright and able to function. I have met others whose families wondered if their children would ever wake up from a diabetic ketoacidosis coma in the ICU.

Additional Type 1 Diabetes Symptoms

Additional Type 1 diabetes symptoms that need immediate attention from an emergency room include:

  • Fruity breath (It can smell like Juicy Fruit mixed with nail polish remover; it’s the body trying to clear itself of ketones – a toxin -through the respiratory system.)
  • Nausea and vomiting
  • Difficulty breathing, almost to the point of hyperventilation
  • Confusion/Unconsciousness

Additional Type 2 Diabetes Symptoms

Additional Type 2 diabetes symptoms include:

  • Tingling in hands and feet (It can be painful – or not)
  • Wounds or infections that don’t heal quickly, if at all
  • For women, frequent yeast infections

Type 2 diabetes symptoms may not present as “acute”, but if you have any of these (and others listed above), it’s still important to see a medical professional for diagnosis. Don’t delay…

If you have any of these symptoms (Type 1 or Type 2) or if a friend or a family member has mentioned any of them in casual conversation, or if you’ve noticed any of these symptoms in someone you care about, please get them to a medical professional for testing  and possible diagnosis as soon as possible.

You can help save a life.

These days, Time magazine isn’t left in a classroom for someone to read…

 

 

 

 

 

Diabetes Awareness Month: I'll Be Your DAM Guide

230436_5814November is Diabetes Awareness Month. (It’s also Awareness Months for epilepsy, COPD, Movember, pancreatic cancer, and prematurity.) For those of us living with diabetes, it’s also called… November.

I wanted to do something different this year to help raise awareness of a chronic illness that directly impacts 26 million people in the United States alone. (The indirect impact is staggering. Think of family members, friends, coworkers, employers, and health care professionals and you get dizzy and a little nauseous.)

Every day this month, I will share information about diabetes in an easy-to-read, easy-to-share post. I promise to be honest and not sugar-coat (Oh, the puns will happen. Just roll with it.) anything I share. I’ll give you facts. I’ll give you resources. I’ll give you experiences. I’ll give you the real deal. Some information will be common knowledge, but other posts will be ones that will make you stop and think.

For November, I’ll be your Diabetes Awareness Month guide. Your DAM guide, like Arnie.

 

 

 

Can I ask you to do one thing for me?

(You can do one thing – or many. Your choice. I’m happy with one, but go crazy if you feel like it. You’ll be in good company.)

  • If you haven’t subscribed to my blog, please do so. (Upper right hand corner. See? Over there? Where it says: “Get It In Your Inbox?”) Sign up and get posts about diabetes awareness and as a bonus, you’ll get other posts about diabetes and me. I don’t sell your email address, will never send you spam (not even the one in the can, because I hoard those), and you’ll never miss a post about the coolest toddler on the block.
  • Like this blog on FaceBook. Or you can follow this blog on Twitter. These don’t just have posts from this blog on them. I fish throughout the Internet for nifty snippets of diabetes goodness and throw them out as chum. Or delicacies. You pick.
  • But at least once this month, if you do nothing else, share a post about something you think is important for people in your life to hear about diabetes. (Each post has a share section at the bottom of it. You can even share a post via email!) Share with other people with diabetes. Share with a friend or a coworker. Anyone who will listen (and even those who may not want to listen, but need to hear it.), but share.

I am one woman, but I am aware that a single person can make a difference in the world. I am aware of what a few of us can do. I am aware of what many of us can accomplish. The Diabetes Online Community has shown me that. 

Now, before we start the DAM tour, does anyone have any DAM questions?

Alzheimer's & Diabetes: Can't Forget

IMG_3162This morning, The Kid donned her furry Halloween costume and, with the promise of candy, traipsed behind a kind lady to a room filled with older ladies and gentlemen. We were part of a toddler parade at the local Memory Care & Alzheimer’s facility and I watched as the faces of these individuals lit up when small fairies, Spidermen, Supermen, ladybugs, Dorothy clutching a stuffed Toto, and my daughter, cavorted around.

They were all in varying stages of the disease that robs them of the thing I hold most dearly: their memories.

Some clapped and joyfully engaged with the children, asking them about their costumes. Others sat quietly, staring without emotion at the hullabaloo. One man didn’t speak at all, but when The Kid batted an orange balloon at him, he smiled and tossed it back to her. She fell down, giggling, in front of him and he reached down to grab her foot and shake it playfully. She grinned at him, he grinned back, and then she took off to look at the fish tank.

When I glanced back thirty seconds later, he was gone; physically still there, but lost in himself. I saw his spark ignite and extinguish in the space of a few minutes. My heart didn’t so much as break as melted.

One of my great uncles (my grandfather was one of thirteen, so there were a lot of great aunts and uncles growing up), Bill, drifted off into the horizon with Alzheimer’s when I was young, but I was shielded to the devastation that it wreaks on a family. It’s one of my greatest fears to be diagnosed with it (along with having a fatal myocardial infarction at a young age) and here I was, face-to-face with those who live with it – and in it.

Scientists are linking diabetes to Alzheimer’s disease these days. You can read about the link here , or here, or get your scholarly info here.

In a nutshell, the people who are a lot smarter than most of the world say that blood vessels in the brain are damaged by high blood sugars and that inflammation also plays a part in the aging of brain cells. The damage can be done years before the first signs of Alzheimer’s disease show up, so all anyone can say is the same as we always hear: keep your glucose levels within range, eat healthy, and get regular exercise.

I can’t forget the happy look on that man’s face – and then the absence of any emotion – and I sit here now, wondering if diabetes will take away yet something else from me in the years ahead.

If you wonder why I advocate and raise my voice for diabetes awareness and healthy living, this is one reason. One reason of many.