Dear Senator Toomey,

Dear Senator Toomey,

I’ve emailed you multiple times over the past few years and never once did it make an impact on your decision in terms of voting.  I don’t expect you to suddenly become liberal because I’ve written you a letter,  but I had hoped that you would have heard the overwhelming cries from your constituents and at least would have compromised in some way.  I’ve even met with your aides in your DC office to discuss the needs of people living with chronic illness in 2013 and 2016, only to be told that basically that there are not enough people like me (living with rheumatoid arthritis) in Pennsylvania for you to take a stand on the issue of lowering outrageous drug costs.  I also spoke about Medicare caps on physical and speech therapy.  Your staffer proudly told me that “he didn’t know anyone who didn’t get extra PT when they asked for it.”  As a speech-language pathologist, I pointed out that isn’t the case for seniors who need speech therapy following a stroke or TBI. (For those that don’t know there is a Medicare Part B therapy cap that limits coverage for BOTH speech and physical therapies at $1980.  Occupational therapy has it’s own cap of $1980).  Speech therapy is not often deemed “medically necessary” by  insurance.  Imagine that.  Not being able to communicate is not “medically necessary” in the eyes of insurance companies.  Makes total sense. (*not sure if you understand sarcasm, so I feel the need to point it out here.)

The past few years, I’ve watched my parents struggle with the cost of their healthcare.  My parents were both hard-working middle class, life-long residents of Pennsylvania.  My father was a maintenance journeyman at a factory and my mother was a small business owner.  They worked hard, paid their taxes, and hoped that they planned well for their retirement.  Unfortunately, medical costs have all but depleted their resources.  I was hopeful with the expansions set forth by the ACA that these burdens would ease.  I heard you telling your mother in a commercial that “no one would take away her medicare”, yet this Senate Healthcare bill is going to put added burden of cost on seniors who are already struggling.

The impact of individuals living with Medicaid will be even more horrific.  I grew up in a community that saw people on medicaid as “free loaders”.  This is partly a misconception.  Of course there are people who are playing the system, but more often,  people on Medicaid include seniors who require long-term care and have exhausted personal savings.  It also includes people with disabilities like those with autism, cerebral palsy, and mental illness, etc.  You are going to take care away from our most vulnerable citizens with the elimination of the Medicaid expansion.  Providing no more funds after 2024.  Have you not read that we have an explosion of individuals on the autism spectrum in this country?  Do you expect that all of their parents are millionaires?  I expect to see more people with mental illness back on the streets because they won’t be able to get the help they need.  In the worlds of Trump and Obama (finally they agree on something).  This bill is just MEAN.

I haven’t even mentioned pre-existing conditions yet.  The House bill was frightening.  The threat of waivers and “high risk pools” made me sick to my stomach.  Then I read the Senate bill.  At first glance, it looks like it will protect people with pre-existing conditions by protecting us from exorbitant costs.  Although, I fear that to make the Conservatives in the senate happy, those protections will probably disappear before the vote is cast.  There are also a lot of loopholes that I am sure I will have to learn to jump through if I want remain ambulatory (my medication is the only reason why I am still able to walk, I have no doubt).  My current medication is over $17,000 per month.  I find the cost repulsive, but it’s working for me.  I also feel guilty that I have private insurance that covers this for me, while those on Medicaid aren’t able to get the treatments they need due to cost.

I find the fact that the Senate Healthcare bill targets seniors, the disabled, and women horrific.  I did notice that there are no women who worked directly on this bill.  I’ve never had a baby, but I completely support pre-natal care and maternity/paternity leaves.  I have to laugh that men don’t want to have to pay for pre-natal and maternity coverage.  Am I wrong or didn’t all men come out of a vagina?  I’ve never had cancer, but I support the coverage of chemo and other life saving drugs, no matter the cost.  I’m not a senior citizen, but I will be some day and at the rate the republicans are going, I will never be able to afford to retire and afford medication that allows me to not only walk, but to live.  Without disease modifying drugs, my body will continue to shut down.  I’ve already had damage to my skin, kidneys, arteries, and heart from my disease (didn’t know arthritis did that, did you?) prior to finding the right treatments.  My medication keeps me alive.  Affordable healthcare is the only way I can survive.

The thing that I find glaringly omitted from the Senate healthcare bill is any form of regulation in place so that insurance and pharmaceutical companies can’t continue to drain the savings of millions of Americans while they continue to get rich off of our illnesses.  I know that you were earmarked by the health care industry and even received $42,125 from Select Medical Holdings.  In 2015, you also purchased $15,000 of shares in Health Care Select Sector SPDR Fund.  One of their largest accounts is Pfizer, so it makes sense that you aren’t regulating the healthcare industry.  That industry lines your pockets after all.  Don’t get me wrong.  You have a right to make a living and to have a life savings.  You have a right to have donors like Betsy Devos give you lots of money.  All of these funders expect your loyalty when it comes time to vote.  You voted for Betsy Devos to be the Secretary of Education, even though the majority of Pennsylvanians did not support that appointment.  You don’t protect the people of Pennsylvania’s interests as much as you protect your own.  You are a millionaire, so I’m sure if your mother’s medical costs increase with the passage of this bill, you will be able to cover her expenses.  I unfortunately, can’t do the same for my parents.  That breaks my heart.

At the end of the day Senator, you have to live with the morally shocking cuts you are proposing to healthcare.  I don’t expect you to understand what it is like to scrape by paycheck to paycheck worrying how you are going to pay for all of your medication to survive.  I do expect you to actually listen to your constituents and at least compromise.  the ACA was far from perfect, but it was a step in the right direction to make this country healthier.  The Senate bill will leave 23 million Americans without coverage.  That sir, is a travesty.

I know that you won’t listen, but I am asking you to consider voting “NO” on the passage of the Better Care Reconciliation Act.

 

Sincerely,

Kelly Conway

 

The Superhero inside…

I saw Wonder Woman today.  It was incredible.  As I watched the gorgeous Superhero battling the bad guys, I admit I wished I could be her.  To be tall, beautiful and a genuine badass like Diana Prince??  One can dream….

Then I thought about it and realized that I am often Wonder Woman.  I often wonder how long it will take for me to get out of bed in the morning due to a stiff back.  I wonder how much my ankle will swell and hurt while running errands.  I wonder how long it will take me to fall asleep at night as the clock ticks past 2 am and the alarm is set for 5 am.  I wonder how much pain I will have at the end of the work day.  Most especially, I wonder how this ended up being my life.

But each day, I get out of bed even if I have to crawl out of it.  I still run those errands with a swollen and painful ankle.  I get up and work a full day on as little as 3 hours of sleep.  Most importantly,  I am living my life as best I can with chronic pain.

So there you have it.  I am Wonder Woman!

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Georgia as Wonder Woman 2012        #georgiathecavalier

Review: The Gupta Programme™

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was really excited when I was asked to review the Gupta Programme. I have previously done meditation classes and one intensive course and have always felt that meditation was a good way for me to center myself and help manage my pain. The Gupta Programme™ is a treatment for these illnesses such as Chronic Fatigue Syndrome (ME or CFS) and Fibromyalgia. The website also it treats several other medical conditions . You can read more about this treatment and the other illnesses they treat on the Gupta Programme™ website. The program was developed by Ashtok Gupta who claims to have suffered from CFS/ME for three years before he claims to have gotten himself  “100% better”.  Note, he is not claiming he is cured, rather 100% better and has been for many years.  Ashton has spent the last 15 years researching his treatment program and has published his research findings here.  The more I read about Ashtok, the more skeptical I felt.   I am always skeptical of “cures”.  At this point, I wasn’t sure what to think about this program.  I tried to keep an open mind and these are my findings.

Firstly, Ashtok is a charming and genuine man.  He truly believes in his program and has obviously dedicated many years to making it a well thought out and planned out treatment.  The program consists of 14 interactive Videos, a supplemental material workbook, mind map, and weekly video sessions which can be viewed live (Ashtok is from London and the videos aired while I was working, so I was not able to participate in the live video sessions). You can also join a private Facebook group for post session discussion.  Overall, this 12 week program is comprehensive but flexible.  You can watch the DVDs and recorded video sessions at your leisure and complete the assignments as you go.  There are also tons of testimonials from patients who have reaped the benefits of the program.

Easy to like:

  • The program is solid.  It’s so well thought out and put together that I am positive it took years to develop.  Ashtok is well spoken and passionate about the process of amygdala retraining.  He is a gentle guide throughout this entire process.  He is also very thorough with his explanations and examples.  Sometimes, I felt like it was just too much talking, but it could be because I have done so many other meditative programs and I just wanted to “get to it”, regardless, Ashtok is great and really believes in this program.
  • Flexibility of the program.  I could not keep up with the 12 weekly groups due to work and life.  This program is comprehensive and my hectic schedule made that difficult.  I am continuing with the program at a slower pace and will continue to do so.  I also liked the rationale of amygdala retraining.  To me it makes total sense.
  • I also liked the free meditation app, The meaning of life.  It’s simple to use and a great tool.
  • The Facebook group was helpful.  I appreciated the posts from people who were struggling and/or finding success with the experience.  It is helpful to know you are not alone and it really gives a group experience even though users are world wide.
  • The program offers a 6 month money back guarantee.  I’ve read the research and although I feel it is limited, I love that they are really taking this program seriously.  There are so many snake oil salesmen out there making money off of patients.  The Gupta Programme is not doing that.

Difficult to appreciate:

  • The statement of 100% better.  Although I’m thrilled Ashtok feels that way, it makes me uncomfortable.  I feel like this is a great tool in the treatment of chronic disease and pain.  I helps you to learn to turn around your negative thoughts and focus on taking control and although I feel like the program has helped me, I do not feel like I ever reach 100% better.  Maybe that is a negative thought I need to “stop, stop, stop” (as per the program).
  • The mind map was not something I liked.  I do appreciate the fact that it brings in a more kinesthetic component to a meditation, but it is HUGE poster that goes on the floor.  I really did not fit in my living room with my furniture.  There are warnings in the program that you can avoid it if it is too slippery, so it is not a mandatory component.  Again, I appreciate the whole body involvement in the process, but this took was just too darn big.
  • As I said earlier, the program is solid but it is really comprehensive.  As someone who works full and part-time it was difficult to manage all the components of the program.  In addition to the DVDs and the weekly video sessions, there is also a workbook, journaling and weekly assignments.  These are important components to the treatment, but take time.  Honestly, I couldn’t keep up during the 12 week program; however, I am getting through it at my own pace.

Overall, I do feel like this program is helping me to decrease those negative thoughts that flood my mind in regards to my chronic illness.  I find myself more centered in my ability to push the negative thoughts away and to focus on the present.  This does help me focus less on pain (I still have pain, but I can manage it a bit better). It is a lot of work and you need to really dedicate some time to reap the benefits, but overall, if you have the time, this program is for you.  Meditation is a powerful tool for well-being and Ashtok has created a comprehensive program to help people feel better.

 

Check out the Gupta Program for yourself here:  http://www.guptaprogramme.com

 

 

A powerful voice…

https---blueprint-api-production.s3.amazonaws.com-uploads-card-image-480700-d11923cf-d435-4043-8280-f6c6cccc589bA few days ago, the world was sad to learn that Chris Cornell passed away.  My mother was not familiar with Chris and asked me who he was.  While telling her, I kept saying he had a “powerful voice”.  I remember seeing him with Soundgarden in 1992.  I knew some of their music, but when I heard him sing…..WOW!  His voice made an impact whether you were a fan or not.  Over the years, Cornell’s music has been a consistent part of my life. Chris had a gift and he used it well.  The more I heard the term “powerful voice” mentioned on the news, the more I began to think about all of the patients I know who also have a powerful voices.

A powerful voice is obviously not just one that can sing.  It’s a person who can tell their story to inspire, change, impact others, and provide validation of feelings.  There are many patient advocates who have provided these things to me with their voice.  Britt from The Hurt Blogger, Kirsten from Not Standing Still Disease, Rick from RADiabetes, Marla from Luck Fupas, Tiffany from IFAA’s Systemically Connected, and my Southern sister Amanda from All Flared Up have all helped me over the years by sharing stories that provided me with inspiration and a sense of not being alone in this chronically ill battle. My fellow patients, with their powerful voices, inspired me to join movements, pursue dreams, and fight for patients rights.  They are the reason I became a patient advocate.  They inspired me to tell my story and to strive for changing the role of patients in the world of medicine.

Another powerful voice in my life is Sean, a 17 year-old who has been living with Ankylosing Spondylitis for several years.  He decided four years ago that he wanted to do something for others living with juvenile arthritis and he began “Sean’s Squad”.  Each year, Sean has inspired friends and family to walk with him to raise money and awareness for the Arthritis Foundation Eastern Pennsylvania‘s Walk to Cure Arthritis.   This year the AF made him their “Young Adult Honoree”at the annual walk in Philadelphia. It was a well deserved honor for an amazing kid who found his powerful voice at a young age and is making a positive difference in both his and the lives of others living with juvenile arthritis.  DSC05138

I went to both high school and college with Sean’s mom and dad, so I have known him his entire life.   Every day, Sean inspires me with his wit, charm, and dedication to living well with AS.  He is an amazing young man that I am honored to know and love.

Blogging has been a way for me to deal with my feelings of living a chronic life.  Then I started to notice that patients were interested in hearing my stories.  Now, I’m not brave enough to say I have a powerful voice like those I mentioned earlier, but I do hope that my voice/ stories do connect with other patients and make them feel they are not alone on this chronic journey.  The patient voice is powerful and the medical community needs to see us more as team members in our treatment instead of passive recipients of drugs and treatments.  We are patients, hear us roar.

I preexist therefore I am…

 

brain-freeze_o_1928899I’ve been in a brain freeze for the past few days.  The recent passing of the AHCA bill in Congress has left me reeling for many reasons.  When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare as my insurance.  It made me realize that people have no idea what insurance is and how it works.  We all think we know how it works, but honestly, the hows and whys are never really looked at I’m depth unless you need it. Insurance is a pool I unfortunately need to use my insurance a lot.  I will be one of the people placed into the “high risk pools” according to the AHCA.  Again, I do not currently use the ACA BUT the ACA did impact my personal insurance by not allowing a cap on coverage.  The AHCA allows insurance companies (and yes, that means private insurance, too!!!) to cap people’s insurance.  What does this mean?  Well, say I have a $1,000,000 coverage limit for my lifetime (there are also yearly caps).  Once I meet that limit, I would lose my insurance.  Now some people wouldn’t worry about reaching that limit but my current drug is $18,000 per month (in addition to all of my other medication).  That drug alone costs my insurance $216,000 a year.  That million dollar coverage limit will be surpassed in less than 5 years with a lifetime cap.  I firmly believe this drug is the only reason I am still able to walk and use my hands functionally.  I need it to live.  I need it to work.  Insurance companies also are not big on reinventing the wheel.  Historically, they take on mandates set by the government and follow the lead of CMS.  If government mandated insurance sets up these limits, private insurance is sure to follow.  Do you see the validity of my concern now?

As for high risk pools, well that would possibly cause my out of pocket costs to rise significantly.  I’ve seen many figures that are outlandish.  I would see about a $26,000 rise according to one chart and $35,000 according to another.  None of these figures are exact because the AHCA bill passed without a cost figure.  No one knows.  I live with thyroid disease, DSAP (skin disease), fibromyalgia, spondlyoarthropathy, and high blood pressure.  I am not being a drama queen when I say that I am petrified.  I also think about how many people across this country have preexisting conditions.  Obamacare-Pre-existing-ConditionsThe threat of higher deductibles and  higher prices for coverage causes me to have higher anxiety all the way around.  I can’t imagine how parents of children with preexisting conditions are feeling right now.

The scariest thing for me is not just the ramifications of this bill passing through Congress, but  that people in my government and country feel that it is okay to cause millions of American’s to lose affordable insurance.  To classify those with preexisting conditions as if we are simply drains on the healthcare system instead of equals to other tax paying citizens. I know that I am lucky to have insurance.  I know my costs are higher than many others in my insurance pool.  Should I feel guilty?  Should I be grateful and never complain?  I know many of my fellow Americans don’t want to pay taxes for insurance that includes someone like me.  I have no issue with doing so.  I’m happy to pay extra money so my fellow citizens have the medical care they need when they need it.  That is what insurance is after all.  You pay for coverage you many never use, but when you get sick, it’s there.  18425028_10154698294562309_8112402611752696432_nPeople don’t seem to understand how important it is to have insurance coverage. Some politicians have made outlandish statements that indicate to me, they have no idea what it is like to live with chronic or acute illness.  For example:  Rep. Raul Labrador (R-Idaho) stated in a town hall “Nobody dies because they don’t have access to health care.”  Um what??  Go ahead and re-read that sentence again.  I don’t have statistics on it, but I’m willing to bet that thousands of people in the U.S. die each year because they don’t have health care.  How can any rational person think otherwise?

In addition to penalizing sick people, there will also be an age tax.  It will charge those not yet eligible for Medicare a penalty of five times what others must pay for health insurance.  This is all related to letting insurance lapse in coverage over 63 days.  So imagine, you lose your job to layoffs or downsizing and can’t afford to keep up insurance while you job search.  You get it back once you get a new job, that may or may not pay you less than what you made before, but now your health care is 5% higher if you are over 60?  I guess being unlucky is also a preexisting condition.

Now in saying all of this, I will admit, ACA needed a lot of work, BUT it was the first move in the right direction.  I feel like politicians are so polarized by their party that they refuse to work together….and Americans with preexisting conditions are the ones paying the price.  I’ve written before in A burned down house…I don’t think so… that I am tired of people making a profit off of my illness.  Drug costs are soaring, malpractice is soaring, while patients are struggling to make ends meet.  The thing that Washington did not take into consideration is that more Americans than expected have medical issues.  The number of sick people who accessed ACA caused insurance companies to go haywire, hence they dropped out of the system.  This left patients with little choice and caused  coverage prices to rise steadily.  Instead of working together, Democrats and Republicans have simply stuck to party lines.  There has been no compromise. No working together for the betterment of Americans.

At the root of it all are drug and insurance companies that make millions of dollars off of the illness of others.  pills-and-money-greedRecently big insurance companies like Oscar and Aetna have pulled out of the ACA exchange because it was not profitable enough.  Too many Americans who signed up for ACA were sick and in desperate need of insurance to cover medical costs.  Sadly, many couldn’t maintain insurance because the costs skyrocketed.  See insurance companies love to make money.  They have deals with pharmaceutical companies.  It goes something like this:  Big pharma sets a drug price.  They negotiate with insurance companies on a price and then the offer rebates that lower the costs of those drugs to insurance companies while patients keep paying their high deductibles.  Again….the rich corporations keep getting richer while patients and their families struggle to pay high deductibles for medication that they need.  No one in Congress has been talking about that.  Heck most people have no idea about terms like rebates, adverse selection, step therapy, and moral hazard (click on links to learn more) relate to insurance.  People have no idea that doctors are going out of business due to minimal reimbursements for administering certain drugs and treatments in house.  For example, a rheumatology office can provide IV biologic drugs in their office.  To provide this service, the office must have staff on hand to monitor the infusion treatment.  This job is typically done by a nurse.  Insurance will reimburse a percentage of the drug administered in the office, but will not reimburse the cost of the nurses role in that treatment, the IVs, the materials used etc..  The office can’t provide the drug without staff and supplies, but then can’t pay for the staff  or supplies due to lack of reimbursement from insurance.  This forces doctors to close their infusion rooms and patients must get their treatments at hospitals that charge insurance way more than a small medical practice would.  I guess big business insurance prefers to do business with big business hospitals instead of small business doctor’s offices.

Whatever side of the aisle you land on, it’s time to take a stand.  We have representatives in Washington DC who receive money from big industry leaders that influence their decisions.  Voters like to think that their elected officials actually represent them.  Not always the case when it comes to the world of politics (shocker, right!!!???….probably not).  They will say they are “for helping to lower healthcare costs for Americans” yet don’t regulate the industry that drives the prices higher and higher.  Instead they tax Americans and provide tax breaks to big pharma and insurance corporations. How does that make sense in lowering costs for Americans?  Costs of drugs in the United States are so much higher than other countries.  Drug companies justify this cost by proposing that the high cost of the drug than reduce the chances for hospitalization in the future (which carries a significantly higher cost).  I guess in some ways it is a valid point; however, if people had reliable coverage that promoted proactive approaches to instead of reactive approaches to healthcare, wouldn’t that help to balance the impact of adverse selection?  I know the ACA tried to do this with wellness coverage, but the industry was not prepared for how many people in this country were really sick.

 

It’s time to make the healthcare industry and Washington DC to catch up to the needs of Americans with and without preexisting conditions.  It’s time that patients across the country let their voice be heard.  man-megaphoneCall, text, write, email, and visit with your elected officials.  Resistbot is one way to turn your texts into faxes that reach officials.  Common Cause helps you figure out who your elected officials are.  It will take only a few minutes a day to let your voice be heard.  If you want affordable health care, it’s time to speak up!  When the President said, “Who knew healthcare was so complicated.”  I responded, “I did!” Being silent is no longer an option.  I preexist therefore I am ready to fight for affordable healthcare!

How many “ologists” does it take?

mto-ross-macphee-what-s-an-ologist

I’ve finally beaten my flares!  Things should be back to normal, right? Well in the chronic life, it’s seldom normal.  At a recent rheumatologist appointment, I expressed that my spine and hip were killing me.  My doctor gave me a script for physical therapy.  She felt I have tendonitis in my hip.  Turns out my right leg is now longer than my left leg.  I probably adjusted my gait from a flare, and now I’m all out of whack.  Why oh why can’t both my legs get longer so that I can finally be taller and thinner??  LOL  Oh well….  I will now be going to physical therapy 3 times a week after work to help my hip and my “really tight leg tendons”.  I have to admit, my hip has been killing me since the evaluation.  I’m not relishing the upcoming pain of therapy, but I’m determined to get better.

My cardiology appointment went well.  Everything is good and I’ll see her again next year.  I see a cardiologist because my blood pressure was very high for about 2 years.  My primary doctor was always busy, so I saw his PA frequently.  I kept asking about my BP and was told if they put me on any more medicine for it, I would pass out.  I trusted him. Then I started on Actemra.  One side effect is high blood pressure.  I was proactive and made an appointment just to talk about my BP.  I spent most of the visit with the PA’s student.  Then the PA literally patted me on the head and said I was fine even though my BP was 140/90 (on low dose of medication).  Two weeks later, I ended up in the hospital with BP of 200/125.  I learned an important lesson that day.  Stand up for what I believe in and never let a doctor or a PA railroad me again when it comes to my health.  My cardiologist has helped to get my BP under control and I make sure I do what I need to keep it that way!

I also went to see my dermatologist.  I have a skin disease called DSAP (Disseminated superficial actinic porokeratosis) and I get squirted with liquid nitrogen to control these hard little bumps.

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DSAP post liquid nitrogen freeze

There have been times when I have had almost 100 removed at once.  It’s like being stung by 100 bees.  It’s not fun, but I hate having these red bumps, so I do through this process 1-2 times per year.  While I was there, I had my annual skin check.  My fair Irish skin spent a lot of time in the sun when I was young.  My dad recently had many issues with skin cancer on his face, so I know it’s good to stay on top of it.  Well, the dermatologist pointed out a mole on my leg and asked if it looked different to me.  Well, it did….like a lot!  This particular mole was flat and tan.  Looked like a large freckle on the inside of my leg, below my knee.  At the appointment, the mole was obviously changed on the bottom and was now dark brown and bumpy.  The biopsy revealed it is not cancerous but it is an “atypical mole” and she recommends that I see a cancer surgeon or a plastic surgeon to get the whole thing removed because I have a higher likelihood of developing melanoma if it stays. So I guess this is the bad side of good news.  I have to wait for the biopsy to heal before the next procedure, and now I have to do skin checks every 6 months instead of every 12.  Could be worse…..but it is just one more thing to have to manage on my defective body.  (I know, I’m being whiney….but today, I deserve it).

So I have to hand it to my “ologists”, they keep me going.  I’m glad I finally have a team of doctors that are not only great at being doctors, they are great at hearing me and my concerns.  Being a patient is a full-time job.  It gets more complex to manage when you have another full-time job in the mix.  It’s getting more and more difficult to be a chronically ill person while working 40 hours a week.  I’ve been working on my plan for the future.  My goal is to work full-time for 9 more years then I will have enough years to take an early retirement.  After that maybe work part-time.  I love my career.  I’d hate to give it up.  I’m also aware that as this rotten disease progresses that I may have to go out on disability.  Whatever happens, I need to get my ducks in a row.  I’m actively take steps to plan my future so that whatever happens, I can take care of myself and my parents.

Oh and a final note….I’ve received a lot of emails asking for updates on my dog, Georgia.  Well, she was officially diagnosed with Chronic Valvular Disease in March.  Her tricuspid and mitral valves are both leaking.  All of this in addition to Syringomyelia and all of her other medical issues (see My dog’s a spoonie, too).  As the queen of “But you don’t look sick”, Georgia still looks completely fine.  Overweight (we’re working on it), but fine.  I closely monitor her diet, but have been lacking on the getting her more exercise.  I’m hoping my physical therapy gets me in better shape to help her.  We were just interviewed by Modern Dog magazine for their summer issue.  I’ll share the link if she makes the final cut.  Thank you all for your kindness towards my sweet girl.

Here is also a silly video of Georgia.  Her new diet means she can only get one Dunkin Donut Munchkin per week.  She is not happy about it.  She is such a silly girl.

 

 

I hope you are all doing well and you have all the spoons you need.  Be well and know you are not alone.

 

 

 

Nevertheless she adhered…to treatment…

A few months ago, my friend Jodi Seidler  (2Hip Productions) contacted me and asked if I would be interested in sitting on a patient panel focusing on adherence with her at an eXL event in Philadelphia. The amazing MarlaJan DeFusco (Luck Fupas) would be one of the keynote speakers, so I was SUPER excited to join!  I have previously spoken on the topic of patient adherence, so I felt like it was something I could manage. Due to my work schedule,  I was not able to attend the full conference, but I was able to hear a few speakers and read the presentation slide that I missed.  I was excited to be a part of this meeting and honored to be asked to present with Jodi.

 

So what is adherence?  Well, in terms of patients it refers to how correctly  a patient is taking a treatment as prescribed by the doctor with respect to timing, dosage, storage, etc., in order to get the best outcome the treatment can give.  Access refers to how easily a patient is able to get the specific treatment.  It should be a straight forward process.  A patient is given a drug, they take it as prescribed, and they access it through a pharmacy or doctor’s office, etc.  Simple right?  Well the human experience is never straight forward.  There are many barriers that prevent patients from adhering to and having access to treatment.  Let me explain.

Barriers to adherence and access occur for many reasons.  Here are two of my own personal examples of times where I did not adhere to my treatment directives.

Lack of adherence example 1:

I used to take methotrexate, a DMARD, which is a low dose  chemo-therapy medication.  You are not supposed to drink alcohol or go in the sun.  Well, I used to rent a house at the Jersey Shore with friends every summer.  I’m not a big drinker, but there were times that I wanted a margarita and hang out on the beach with my friends.  I was young, single, and desperate to feel “normal”,  so I would skip a dose.  In the end,  I stoped taking this drug because it made me lose a day a week to exhaustion and nausea.   The side effects did not outweigh the positive effects of the drug.

Lack of adherence example 2:

In 2010, I stopped taking my biologic drug (voluntarily) for 6 months in order to travel to Uganda to provide speech-language therapy to orphans.  It was a once in a lifetime opportunity.  I wasn’t able to get vaccines to protect me if I continued on my biologic drug.  (Although I couldn’t get any of the “live virus” vaccines).  It was painful and difficult 6 months, but I chose to do it anyway.  I did stay on my DMARD, so I wasn’t completely medication free.  Did my doctors think I was crazy to stop a biologic drug that was working? Yes. (So did my family and friends!)  Fate had offered me the opportunity of a lifetime, and I knew it was the right thing to do.  Once I started back on the drug, I kept breaking out in shingles.  I had to stop that drug altogether.  Did my lack of adhering to my treatment negatively impact my life?  Yes.  Do I regret it?  No.  I did not adhere to my treatment  because I chose to live my life without restrictions, even if it included increased pain.  In recent years, I have not had significant adherence issues with any of my treatments.  The only time I put off taking a biologic drug now tends to be due to illness (This winter I’ve had the flu, the stomach virus, and a sinus infection).  You can’t take biologic drugs when you are sick, so there were 1-2 week gaps throughout the winter in which I was unable to take my treatment.  It stinks, but sometimes patients don’t adhere because they simply can’t help it.  Biologic drugs lower the ability to fight off infections.

Access barrier example:

I’ve never had too may issues with access to treatment, but my mother recently has.  My mom suffers from an inflammatory bowel disease.  She’s lost over 50 lbs. from chronic diarrhea and her quality of life is negatively impacted.  Her doctor recommended a drug and gave her the first 3 days sample.  She went to have it filled and the cost was over $900.  My mother is 73 years old and on Medicare with a fixed income.  She can’t afford a high-priced drug that is not covered by Medicare (honestly, how many of us could??). The fact that she is on Medicare prevents her from being able to use promo coupons that would reduce the drug to about $300.  My mother’s barrier to accessing a treatment that would help her live with a better quality of life, is financial.  That is just a shame.

I spoke at an Adherence summit in 2014 and I sat with a man who worked in marketing for a pharma company.  During a round table discussion, he said something along the lines of “Cost is no longer an issue for people to access drugs because there are so many options for patients”.  The other professionals at the table all nodded their heads in agreement.  I think I almost fell off of my chair.  My mom’s story is one of hundreds that I hear about from patients who are unable to afford medication that may improve their life because of cost.  I was shocked at how out of touch people in the industry were in regard to adherence and access.

Now in 2017, I was very interested to see if pharma has caught on to the patient needs.  Well….as I said earlier, I had to work, so I only attended a small part of the event, but I do feel like the “industry” is trying to envision the patient point of view now.  One amazing speaker talked about the differences of adherence, persistence and compliance and how that impacts a patient’s treatment.  She also spoke about the high prices of drugs, but justified it by saying that taking this drug may prevent a patient from needing further medical care like hospitalization, that would cost even more.  I never really thought about it that way and I appreciated that new perspective, but then I thought about the fact that some of the side effects from my drugs can cause serious illness like cancer, so I may end up in the hospital anyway.  It’s a catch 22, right? Why do I take it?  Because I want to be able to walk and use my hands.  So, I still think drug prices need to be more affordable to ensure all patients who could benefit from a drug can get it.  Similar drugs in other countries are way more affordable.  Here is a 2014 summary of the cost of Humira (a biologic drug that helps a lot of people with autoimmune arthritis and other diseases).  The price in this country is way higher than other countries.

 

Another duo presented on “Bridge the Gap Between Application of Behavioral Science in Marketing and Patient Adherence”.  In this presentation they discussed patients’ active vs. inactive participation in the treatment process.  I listened to researchers as they described the behaviors of patients in explicit detail.  They are trying to pinpoint every single detail that is involved in adhering to medication down to the motion of the arms when opening a medication pack.  Their goal is that by focusing on the minutiae that marketers can produce treatment plans that ensure patient adherence.  All I could think is that patients are not controlled variables. You can put us into controlled situations, but we don’t always behave in optimal ways all the time.  It’s just human nature.   If medication makes you sleepy and you have to pick up a friend from the airport, you may delay taking your medication.  You may go on vacation and forget your medication bag (oops….I’ve done this twice).  It is life getting in the way.   I appreciate the researchers insight and attention to detail, but I still think they are missing the mark.  We are human.  We are flawed.  We are sick and we are tired.  If the drugs were curing us, we’d adhere completely.  For most of us, that does not happen.

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Whoo hoo! That’s me!

Multiple presenters discussed tracking tools, both digital and paper/pencil types that help lead people to adherence.  I’ve tried about 10 different tracking tools.  I had one doctor who had me physically write out my pain daily on a scale of 1-10.  I rarely filled it out daily and then rushed to complete it the day of my appointment.  I’ve tried great apps.  I love the idea of apps.  I like tracking my progress on medication with photos, notes, etc…..but I always lose interest after a while.  Using an app daily to document my disease turns into one more thing to do every day….and when you are completely exhausted….it’s too hard, even when it is “realistically” easy.

There are many tools out there to help patients adhere to their treatment programs.  You can get automatic refill on prescriptions so you don’t forget to refill them.  Texts, phone calls, and emails all remind you to order your meds.  Pill packs, timed pill dispensers, wearable alarms, vibrating alarms, and phone apps are all supposed to keep you on track with taking your medication as directed.  For some people, these tools work.  For others (like me) these items also get old fast.  It’s funny, I have a large pill sorter for my dog Georgia’s medication.  Everything is planned out weekly from her pills to supplements, while I keep all my medication in one bottle.  My system works for me.  I rarely miss a dose of medication unless I am sick.  I adhere to my treatment plan for several reasons.  First of all, I have insurance that covers my extremely expensive drugs.  I don’t have to worry that I can’t afford my drugs.  I also have a very clear memory of how well my drugs work.  Yes, I am still in pain and I still have swelling, but my current cocktail of medication does take the edge off.  I’m able to function and honestly, I feel way better on my medications than I do off of them.   I realized I am lucky, so I adhere to my program.

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I find it easier to organize the dog’s life than mine, nevertheless, I adhere to my treatment.  It’s not pretty, but it works for me.

 

Patients stop taking their medications for various reasons including financial, life-style, side-effects, fatigue, and mainly, because they don’t feel like the drug is working.  In my case, my medications take the edge off of my pain.  I always have pain but the pain in the early part of my disease was so intense, that is was crippling.  I have perspective now and I know that I can’t go back to that torture.  I’ve had drugs that work amazingly well for a few weeks or months and then stop.  People with diseases that are curable get can get miracles, and thank God for that!  Those of us living with chronic disease, that have no cure, get temporary reprieves with medications.  Miracles are rare.  It’s exhausting and depressing living with diseases that don’t have cures.  Although most drugs today used to treat rheumatic diseases do slow the progression of the disease, people still feel sick and in pain.  If you don’t feel your treatment is doing “enough”, you tend to stop taking it .

Overall, I am grateful that I was asked to present at this event.  Thank you to Jodi Seidler and Mark Thomas for making it happen.  I also thank the presenters who showed their dedication to patient research.  I want to note that Marla, Jodi and I were the only patients at the event.  Kind of ironic since the event is called the Patient Adherence and Access Summit.  I do feel that we represented the patient voice well, but always wish more of patient voices could be added to make a bigger impact on the industry.  Big pharma needs to include patients more often in the conversation.  I would love to see a patient/research panel discussion in the future.

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Left to right: Jodi Seidler, MarlaJan DeFusco, and Kelly Conway

It’s so complicated…

The President of the United States  was quoted as saying, “Nobody knew healthcare could be so complicated”.  Nobody knew.  Nobody knew?  NOBODY KNEW??!!!  I think my brain may have ruptured a tad bit with that statement. I know a lot of people who knew healthcare was complicated.  They know how complicated it is because they live with it every day.  People living with chronic illness never catch a break when it comes to insurance.  We are made to jump through hoops every time we try to refill prescriptions.  People with acute illness or injury find out quickly how difficult healthcare can be.  Determining what is and is not covered can not only be frustrating, it’s frightening.

Getting sick is hard enough on a person’s body, emotions, family, income, etc.  Add in the complications of healthcare, and it’s overwhelming.  Have you ever heard someone say how easily everything insurance related went while fighting an illness?  Probably not because there is always glitch.  Usually these glitches result when people don’t know the fine print of their insurance.  Insurance that uses the antiquated process of step therapy that makes you try the less expensive drugs before moving on to a drug that may be more appropriate for you.  It’s like taking aspirin for a infection, it may treat some of the symptoms, but an antibiotic would be a better choice.  Step therapy prevents patients from getting treatment they need when they need it.  For example, it took me almost 7 years before I was able to start a biologic drug.  I had to “fail” on several treatments before I could be approved.  Then it was another 6 years before I was able to get a Tier III drug which actually provided relief for my disease symptoms.  That is 13 years of pain, suffering, and serious joint damage.  Who knows what would have happened if that Tier III drug was given to me sooner? I didn’t know what step therapy was at the time.  I just knew that I had to try drugs in a hierarchy, starting at the bottom and working my way up.  I thought it was science, but it wasn’t.  It was an insurance company mandate.  Complicated to understand the results of this antiquated process.  Complicated to live with symptoms that were not relieved by lower cost drugs.

I’ve written about my fear of losing the ability to work.  This is a multi-part fear.  I fear losing my independence.  I fear giving up a career that I love.  I fear not being able to afford my mortgage and bills, including my prescriptions.  Now some people have written to me and claim that I am guilty of insulting people who are already disabled.  That has never been my intent….nor will it ever be. I am simply expressing my own personal fears not commenting on anyone else.  In my own life, I know that losing my ability to work is a real possibility.  I also know that if that happens, I most likely will loose the ability to own my home and car,care for my pet’s medical bills, and help take care of my parents as they get older.  It just stinks that people who get sick and become disabled often become poor.  They have to in order to qualify for Medicaid to help pay for medicine and therapies not covered by Medicare or subsidized insurance.  The whole process is complicated….and sad.

So as I listen to the news and hear politicians, who have outstanding medical coverage, bandy about how best to insure Americans, I feel my blood pressure boil.  Insurance is big business.  Pharmaceuticals is big business. Government is big business. We patients are just pawns in a complicated game in which these businesses continue to make money off of our illnesses. It’s wrong on so many levels that patients perspectives are not included in the discussions.  We are seen as drains on the system, instead of the unique, talented, able-minded citizens that we are.  Healthcare is complicated because big business wants to make money, while the government wants to spend less money….all while patients fight for their lives.  It’s so very complicated…VIhithjlp6tski_1_hd

Congratulations you’re sick…

I saw a news story that Ted Cruz (Senator from Texas) met a woman living with Multiple Sclerosis.  In his attempt relate to her, he congratulated her on her struggle living with MS.  Congratulated. Her. For. Living. With. MS.  Now don’t get me wrong, I am pretty sure he meant he admired her strength for dealing with the disease.  At least, I hope that is what he meant.  Could you imagine someone congratulating you on living with a chronic disease?  I could see it now….getting those Congratulations banners and balloons from a party store to hang in the living room of a person diagnosed with MS, RA, Lupus, Diabetes, etc.  After 25 years you’d get a gold watch or gold cane! Could you imagine?

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on your chronic illness!!!

 

I’m not slamming Senator Cruz, but I think he is the perfect example of the fact that people don’t know how to speak to someone living with chronic illness.  I mean, I’ve had people tell me they admire me, pity me, don’t believe me (because I don’t look sick), and my favorite, “I think I have that, too.”  Honestly, I the thing most people living with chronic illness want to hear is “How are you?” and then the person asking actually listens to our answer (without judgment).

Today my hand decided to try to make life difficult with serious pain and swelling.  By the end of the work day, I couldn’t close my hand around a pen to sign my name.  I literally could not do it.  It was locked and not moving.  I panicked and asked the guy next to me to sign my name. I was morti I then sat through a meeting with ice on my hand to try to get the swelling down before driving home.  It’s a struggle that I really don’t want to be admired for or God forbid pitied for.  I don’t ask for help for so people can feel sorry for me.  I ask so I can get things done quickly and move on.  It’s a struggle that I just want people to accept as being a part of who I am.  It doesn’t define me, but it is something I can’t ignore. I can’t make it go away, no matter how much I hate it.  I can only accept  it as one part of me and keep trying to move forward.  No congratulations needed.

Flu or not the flu, that is the question…

My fibromyalgia has been kicking my butt lately.  Lots of achiness, pain and overwhelming fatigue.

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Photo Credit: Holly Hoffmeister Toulouse via The Mighty

The other evening, I was lying on the sofa feeling lousy when I got a text.  It was my neighbor asking me to come outside to see her new car.  I went to stand up and was hit by a wave of “OUCH”.  I told her I was in too much pain and would check it out the following day.  About an hour later, I struggled walking up the stairs to use the bathroom.  I had to crawl up the last few steps.  It was time for my medication, so I took it and hoped for relief.  Unfortunately, I didn’t take it with food and got really nauseous.  I literally poured myself into bed.  The nausea woke me up around midnight. I stumbled into the bathroom and noticed my face was seriously flushed.  I grabbed the thermometer and to my utter shock, I had a 102° fever!  I was sick!  I had no idea!  The body aches, fever and chills lasted for days.   I’m still not sure if it was a stomach virus or the actual flu.  I had symptoms of both.  It delayed biologic injection by a week (2nd time that has happened due to being sick this winter).  I was out of work for days and don’t think I have slept that much in years.  It really knocked me off my feet…..but for the first 5 or 6 hours, I just assumed one of my diseases was flaring.  I was dumbstruck that I didn’t realize I was pretty ill.  It made me wonder if people who don’t live with chronic illness ever “not realize” they have the flu?  Or has brain fog taken away my perspective when it comes to my body?

One of the main symptoms of fibromyalgia is musculoskeletal pain and fatigue.  The flu causes similar discomfort.  Having both at the same time is akin to having a tractor trailer run you over, then it backs up to finish the job.  It was hideous, but I’m lucky mine passed relatively quickly.  Now I am back to just feeling regular fibromyalgia pain, along with the joint pain from autoimmune arthritis…. lucky, lucky me.

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Photo Credit: Dear Fibromyalgia