Dear Jimmy Kimmel

I wanted to say “THANK YOU” to Jimmy Kimmel for speaking out against the Graham-Cassidy bill that is attempting to pass in the Senate in the next few days.  Jimmy commented on the fact that people will think he is “politicizing my son’s health problems” but he unapologetically states he is doing just that.  He feels he has to since his son was born with congenital heart disease.  Jimmy saw first hand what happens when families who do not have health insurance are faced with health crisis.  When I first got involved in patient advocacy, I never wanted to be political.  I have very strong political leanings, but was not comfortable debating my beliefs….probably because I lose my temper.  Instead, I respected the opinions of others, but respectfully agreed to disagree.  I soon learned that in the world of chronic illness, I had to speak my mind because politics impacts all of my treatments.  Prime example:  I had to “fail” multiple drugs before I could be approved by my insurance for a biologic drug.  I mistakenly thought that I could only take a biologic drug if my disease got severe enough.  Oh no….it’s not that at all.  Insurance companies don’t want to pay the ridiculous costs of biologic drugs, so they reject coverage of the pricey drugs they deem “less safe” than the cheaper drugs.  I say the insurance company wanted me to take drugs that were less effective in treating my condition because it saved them money.  I lived in severe pain for 7 years waiting for my first biologic drug.  The difference in pain control was immense but I was not allowed what I needed by insurance, which for all intents and purposes, is excellent.  You see the insurance and pharmaceutical industries are huge political backers.  It puts regular people at a disadvantage when we try to get our politicians to listen to what we want instead of what big corporations want.  It also puts doctors at a disadvantage when they can’t recommend treatments they know their patients need but can’t access…..but I digress…

Why am I so concerned when I don’t use ObamaCare and have private insurance coverage? I’m worried because the insurance world isn’t a creative one.  It’s black and white.  It doesn’t re-invent the wheel.  When the government issued insurance goes into effect (like Medicare and Medicaid) private insurance tends to follow.  If the new Graham-Cassidy bill eliminates protection from insurance caps, then it’s probably likely that private insurance will too.  I wrote about this in a previous blog called Time to fight….In that piece, I wrote how insurance caps will devastate people living with chronic illness, especially children.  Once you have reached your cap (yearly or lifetime) that is it.  You are out of coverage and better hope you win the lottery.

The Graham-Cassidy Bill also claims to protect people with pre-existing conditions; however, when you look closely at the bill, you can see that we (those living with chronic illness) are hung out to dry.  NPR pointed this out directly to Senator Cassidy on Twitter.  Seems he doesn’t even know everything that is in his own bill.  The bill says we can’t be denied coverage; however each state can waive consumer protections and Essential Health Benefits (go back and read Time to fight)….which would raise rates for people with pre-existing conditions.  Basically Sen. Cassidy, your mouth is writing checks that your butt might not be able to cash.  It all depends on the state in which a person lives.oops cassidy

No one knows exactly how premiums will go up or down as per disease because it will vary from state to state.   Nothing, however, guarantees people with pre-existing conditions are protected from outrageous surcharges.  We may be offered coverage but at higher costs.  Here is one resource floating around that predicts the costs of pre-existing conditions surcharges per premium.  The last time I checked, I don’t have an extra $25,000 in my bank account to  cover this cost. Do you??

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Source:  https://www.americanprogress.org/issues/healthcare/news/2017/09/18/439091/graham-cassidy-aca-repeal-bill-cause-huge-premium-increases-people-pre-existing-conditions/

I feel like NPR did a great breakdown of the Graham-Cassidy Bill that is fairly non-biased.  Check it out for yourself.   Latest GOP Effort To Replace Obamacare Could End Health Care For Millions.

I’ve met Senator Cassidy.  He seems like a intelligent man who’s genuinely interested in figuring out how to improve healthcare; however, I think where he loses his perspective is that 1) he is not in need of health care coverage and 2) he probably wouldn’t have any problem paying for his health care if an issue popped up (God forbid, of course).  I’d love to see a panel made up of politicians, doctors, pharmaceutical reps, researchers, insurance reps, AND PATIENTS who all sit down together to figure out this healthcare issue.  Having all the stake holders at the table….hmmmm….what a concept!!  Come on politicians, other countries have figured out how to provide health care to their citizens, and it’s a fallacy that those countries have sub-par healthcare.  The Graham-Cassidy bill is supposed to lower cost by promoting more competition.  I think those of us living with chronic illness already figured out that competitive health care has NEVER driven healthcare costs down.  Prices continue to skyrocket as corporations get richer while patients get poorer (ok…I’m not sure if that is a word and honestly, I’m too tired to look it up.)

So thanks Jimmy Kimmel.  Lending your voice to this issue does have an impact. Please know that you are now a hero to many living the chronic life.  Now it’s time for the rest of us to also take up the fight.

What can you do?  Call your senators (202) 224-3121 and let them know where you stand.  It’s crucial.  If you don’t know who to call, Common Cause will help you out.   The last bill that went to the Senate floor had only 12% approval nation wide and it didn’t pass through the Senate because three GOP senators stood up for what is right.  The Graham-Cassidy Bill is not what our country needs.  It’s not what people with pre-existing conditions need.  It’s time to fight again.  I head to Washington DC on Sunday to represent my state of Pennsylvania for the American College of Rheumatology.  Stay tuned for my posts.

 

For those who haven’t seen Jimmy Kimmel this week, enjoy!

 

Jimmy Kimmel on Bill Cassidy’s Health “Care” Bill

 

Jimmy Kimmel fights back against Bill Cassidy, Lindsey Graham, & Chris Christie.

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Goodbye My Queen…

It’s the one year anniversary of losing my beloved Lola. She is one of the inspirations for my name Lolabellaquin. Sadly, only Bella remains and she is not long for this world. Sharing as a way to honor one of the greatest loves of my life. Life is simply better with a pet. I’m certain.

As my Joints Turn

8/13/16:  My final update.  My queen has passed…..

“You might be gone from my sight, but you are never gone from my heart.”

My phone rang at 2:00 am. A vet at the emergency hospital told me that Lola “arrested and passed”. I’m surprised none of you heard my scream as my heart broke in two. I asked if I could go and hold her. I raced to the hospital with tears streaming down my face. When I walked in, they told me that Lola stopped breathing for 2 minutes but had just started again. Her eyes were open and she was drooling. Then she heard me and fighter that she is, sat up for me. It was partly my Lola and partly a zombie Lola. Her poor little body was struggling to breathe. When they initially told me she died, I was heart broken that she did so alone…

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Time to fight….

This is an updated version of my post regarding insurance “I preexist therefore I am…” and a longer version of my “The Mighty” piece : How AHCA, Repeal of ACA Could Affect Me With Preexisting Conditions.  I am reeling over the Senate vote to repeal or replace ObamaCare today.  I firmly believe the law needed improvement, but taking it away will be so very detrimental to many.  These are my thoughts.

I’ve been in a brain freeze for a while now. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons.  Just today, Senate Republicans passed the vote to advance to floor debate on their efforts to repeal and replace Obamacare. Vice President Pence had to cast the tie breaking vote. Senator John McCain proposed that Republicans and Democrats come together to make a good law that will solve the problem of many Americans regarding healthcare.  I, like most Americans, are doubtful that will happen and we will once again, have a bill that is one-sided and hated by millions.

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When I expressed concerns regarding healthcare changing, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) 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 in depth unless you need it.

 

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. The BCRA (in the version released on June 22, 2017) amended this by stating that states cannot pass laws allowing health insurance companies to deny coverage to applicants, including those with preexisting health issues; however, it allows states to offer scaled down insurance plans. This means that insurers are not required to offer “essential health benefits” (EHB) which were put in place by ACA.  There are 10 EHBs:

 

  1. Ambulatory patient services (outpatient care you get without being admitted to a hospital)
  2. Emergency services
  3. Hospitalization (like surgery and overnight stays)
  4. Pregnancy, maternity and newborn care (both before and after birth)
  5. Mental healthand substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)
  8. Laboratory services
  9. Preventive and wellness services, including counseling, screenings and vaccines to keep you healthy, and chronic disease management
  10. Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

With these benefits eliminated, an insurance company could impose annual caps or a lifetime coverage cap for people who need or want those benefits. 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 and BCRA allow insurance companies (and yes, that means private insurance, too!) to cap people’s insurance.

 

What does capping insurance mean? Well, say I have a $1,000,000 coverage limit for my lifetime (there could also be yearly caps). Once I meet that limit, I would lose my insurance and have to pay out-of-pocket for everything from that point on. 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. I will surpass that million-dollar coverage limit in less than five 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.

 

As for high-risk pools, it seems the BCRA will not include those, but they will allow states to offer these pared down insurance plans that do not cover essential health benefits. What does that mean? Well, it means that people who want or need to have those EHBs in their insurance will have to pay more for more coverage. Essentially, people with pre-existing conditions will have out-of-pocket costs rise significantly. How much? No one knows exactly.

 

I live with and manage thyroid disease, DSAP (skin disease), fibromyalgia, spondyloarthropathy and high blood pressure. I am not being a drama queen when I say I am petrified. The amount of coverage I require just to function may be more than I can actually afford. Let’s also not forget that no one can predict that they will remain healthy or free from accident/injury throughout their lifetime. Someone may opt for an insurance plan without EHBs and then years later require rehabilitative medicine following a car accident or stroke. How will they afford for expensive therapies if their insurance doesn’t cover it?  Their cost for insurance will be low, but when it doesn’t cover what you need?  Is the low cost worth it?  Someone I loved dearly had bare bones healthcare pre ACA. I remember how thrilled he finally got a job that provided insurance.  He ended up battling cancer. His insurance being minimal covered the bare bones of treatment. Fundraisers helped him make end meet.  The financial stress of cancer combined with the cancer itself, was simply too much. If he had better healthcare, I firmly believe he would have had a better chance to survive.

 

I also think about how many people across this country have preexisting conditions. The threat of higher deductibles and higher prices for coverage causes me to have higher anxiety all the way around. The scariest thing for me is not just the ramifications of this bill passing through the Senate, but that people in my government and country feel it is OK to cause millions of Americans 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 pay for my insurance so that women can have maternity coverage (even though I do not have children), I pay so people with cancer can receive chemo treatments (even though I do not have cancer), and I also expect my insurance to pay for what I need.  That is how insurance works.

 

I know 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 may never use, but when you get sick, it’s there.

 

People 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 many people in the U.S. die each year because they don’t have health care.

 

In addition to penalizing sick people, there will also be an age tax. It could raise the premiums for older adults to be five times what younger adults are charged. This is all related to insurers being able to charge you more and exclude coverage for preexisting conditions (for up to 18 months) if you have a lapse in health care coverage for more than 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 you might have to pay more for health insurance? 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.

 

pills-and-money-greedAt the root of it all are drug and insurance companies that make millions of dollars off of the illness of others.  Recently 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.

 

The President tweeted recently, “Republicans should just REPEAL failing ObamaCare now & work on a new Healthcare Plan that will start from a clean slate. Dems will join in!”  tt

 

Wow. The leader of our country wants the current law repealed so we can have a “clean slate.” How convenient! If only patients could get a clean slate. Make our diseases go away until we are ready to finally handle it! What a fabulous idea! I can see it now: cancer patients, autoimmune patients and differently abled patients all putting their treatments on hold until Washington D.C. politicians can figure stuff out. That sounds logical! I propose this instead: Patients under ObamaCare go about getting their treatments and not pay anything until our political leaders figure things out! How is that for a clean slate?

 

Whatever side of the aisle you land on, it’s time to take a stand. It’s time to make the healthcare industry and Washington D.C. catch up to the needs of Americans with and without preexisting conditions. It’s time that patients across the country let their voices be heard.

 

Call, 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 healthcare, it’s time to speak up! When President Trump said, “Nobody knew that healthcare could be so complicated,” I responded, “I did!”

Being silent is no longer an option. I preexist; therefore, I am ready to fight for affordable healthcare!

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How the Current Health Care Debate Affects Me as Someone With Preexisting Conditions

***This is an updated version of I preexist therefore I am… ***

 

I’ve been in a brain freeze for the past few days. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons. When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) 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 in depth unless you need it.

Read more on The Mighty ….

What about us?

I’m going out on a limb.  I may be controversial with my stance, but I am taking it.  I see all the programs out to help people with opioid addiction.  I’ve also seen memes asking why Narcan (a drug that reverses opiod overdoses) is free while chemo isn’t free for cancer patients.  bj3LWVIHbJdRkEt5hGMSBLntwVMNAt0w_lgNow drug addiction is a horrible thing and it is impacting millions of people and their families. I’ve cried reading the obituaries of young people who lost their battle with addition. It’s all very tragic. I agree things need to be done to reduce these statistics.  According to the American Society of Addiction Medication (2015)

  • Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2million had a substance use disorder involving prescription pain relievers and 591,000 had a substance use disorder involving heroin.

20.5 million is a lot of people.

Now let us look at the statistics of people who are living in chronic pain.

  • In 2011, Congress commissioned an IOM (Institute of Medicine) report on people living in pain.  According to that report, 100 million people in the United States live with chronic pain.  Let’s look at that statistic again.  100 million people living with chronic pain.  That is way higher that the 20.5 million people living with substance abuse.

100 million people is a LOT of people.

Now I’m positive many people who live with chronic pain become substance abusers.  Pain medication is a slippery slope.  Typically, there is no good treatment for pain.  Doctors have been prescribing pain meds because it’s the quickest and easiest solution to treat pain.  I’ve taken a drug called Tramadol for 15 years.  It’s recommended that I take it 3 times a day.  Most often, I only take it twice a day.  It’s only on work days that I hit the full dose.  I hate having to take pain medication.  I know it masks my disease.  I know it makes me put more stress on my joints because the pain is dulled so I feel I can do more.  Am I addicted?  No.  My body is very used to taking this drug, so I would have to be very conscious about going off of it, but I am not an addict.  Hell, when my dog needed Tramadol and I didn’t have money, I gave her what she needed out of my prescription.

Do I know people who are addicted to pain meds?  Yes.  Many people in the chronic life/rheumatology communities have pain way more intense than mine.  They take strong drugs like morphine and oxycodone that may cause addiction.  Why do they take it?  For quality of life.  Living in pain is horrific.  It’s exhausting and life altering.  Pain medication is the only way some of us actually can function as human beings.  Are they all addicts? No.  Often there are no other treatments for people living in pain.  Little research is done for conditions like osteoarthritis.  Patients are told to take pain medication until they get down to bone-on-bone destruction of joints and they become eligible for a joint replacement.  There is no other good long-lasting treatment.  Everything is a temporary fix.

Often patients living in pain have little option for treatment.  Insurance doesn’t cover anything that may be considered experimental or high tech devices that are not considered “medically durable equipment” (like TENS units, etc).  As I have said a million or so times before, being sick is not cheap.  (I may be exaggerating with a million, but I’m probably close).  Plus, there is a stigma of living in pain. A lot of people see chronic pain sufferers as hypochondriacs, lazy, or drug abusers.  As a community, we are so misunderstood.

So my question is:  Why are 100,000,000 people living in chronic pain being treated as 2nd class citizens?   Why are politicians like Trump and Christie starting  programs to address the needs of opiod addiction, but ignoring the fact that 5x as many citizens have chronic pain due to various illnesses and injuries?  Where are the programs that help people living in serious pain get support, access to treatment, and medications that help them get off of pain medication?  Where is the funding for patients to use alternative treatments like physical and occupational therapy, acupuncture, and technology to combat their suffering?  There is no way that some out of the 100 million people in chronic pain do not become addicted to pain meds.  Why aren’t we looking at all the sources of how addiction starts?

People living in chronic pain are seen as “drain on the system” in terms of insurance, medical cost, and disability (medicaid).  We live in a reactive society where illness is often treated with bandaids because there are programs like step therapy in place that prevent more costly and possible effective treatments from being implemented at early stages of disease onset.  If you ask me, insurance companies are a big reason why opiod addiction is soaring.  Insurance will cover pain medication and reject other treatments.  It’s the easy and cheap solution when auxiliary treatments are so expensive.  ****It should be noted that there is limited treatment programs covered by insurance for mental illness, PTSD and many other conditions that lead people to self-medicate with drugs.  Insurance likes quick fixes.

So now I ask.  What about people living in chronic pain?  Where are the programs for   people living with painful, debilitating autoimmune diseases who struggle daily to get by, and now their access to their pain medication is in jeopardy?  Where is the political support for depression and suicide prevention that often coexist with chronic pain?  Where is the funding for more research to cure these diseases and to fix these injuries? What about all 100 million of us?

 

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It’s quite an honor…

 

***Update.  I received a 4th nomination. Thank you again!!

A big thank you to whoever nominated me, & As my joints turn, for THREE Wego Health Awards.  I am beyond thankful and humbled.  It means so much that more than my mom an dad read my blog.  WEGO Health has lots of Health Advocates nominated for tons of awards.  Check out their site: WEGO Health Awards to learn more about some of the amazing advocates who motivate and inspire me daily.  I’m honored to be in their company.

 

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Get your skin checked!

A little Public Service Announcement: A few weeks ago, I had a biopsy to remove a “suspicious” mole. This was done during my annual skin check. In addition to being a child of the 70’s and 80’s who loved baby oil to get a tan, I do have a skin disease called DSAP (Disseminated superficial actinic porokeratosis). I see the dermatologist annually to check for skin changes and to keep DSAP under control (I have dozens of DSAP spots burned off yearly). I’ve always expected sun damage to lead to an issue. So I was quite surprised that a mole that I have had for as long as I can remember became “suspicious”. It was a perfect circle until suddenly, it wasn’t. Sadly, I didn’t even notice it until the dermatologist pointed it out. The biopsy results indicated a mid range level of suspicious cells, so they recommended that I have the entire mole removed through excision. It was actually a bigger process than I expected and hopefully, there will be nothing else I need to do as follow up (other than removal of the stitches.) I have to wear a big bandage, and I’m not allowed to do much for a while so it can heal. My advice to all of you…..get your skin checked. I totally missed the change in this mole on my leg. Luckily, I probably caught it early enough. Ask your GP or make an appointment with a dermatologist. Better safe than sorry.  

 

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