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?




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.





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.



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!


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:



A powerful voice… 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?


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.


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.