Dear Lawmaker

Dear lawmaker,

The ACA saved my life. On May 17, 2013 - I collapsed on my floor not breathing, that moment changed my life forever. My husband, who served in the US Army for 16 years and who was a trained medic, performed CPR on me. My loving husband pounded on my chest and breathed into my mouth on my living room floor for what seemed like an eternity until the paramedics arrived. The ambulance took me to the hospital and my entire life changed in an instant. I was diagnosed with a terminal medical condition and I lost my job because I could not return to work when my medical leave ended 12 weeks later. My employer's COBRA premium was $1400.00 a month just for my individual coverage and I no longer had a salary to help me pay it. We put my car up for sale, and we sold off many of our processions trying to raise the money to pay my COBRA premiums. My friends posted a Go Fund Me page to try and help me raise enough money to afford my COBRA premiums and medical bills. We maxed out our credit cards and then opened a couple of new ones and maxed those out too. I was in the middle of life saving medical treatments, in the hospital hooked up to an IV and heart monitors, so there was no way I could go without insurance. It was terrifying lying in my hospital bed worrying that if I could not scrape up enough money to pay my COBRA premiums that I would lose my insurance and I would die.

I switched to an ACA plan as soon as they became available couple of months later. My new ACA plan premium cost only $131.00. I went from paying $1400.00 just for my individual COBRA coverage down to $131.00 for my individual ACA coverage. My ACA plan also offered better coverage than my employer's COBRA plan. My ACA plan allowed me to access the type of medical care I needed to save my life. My COBRA plan did not cover home infusion and I had spent weeks in the hospital, all alone. While my husband was working and doing his best to keep our family going, I was spending days and nights alone in my hospital room, away from my family because my COBRA plan did not cover home infusion treatments. Now my ACA plan did cover home infusion treatment and this allowed me to be treated at home with my family around me. I cannot explain how much it meant to me to come home and be with my family again. Being with my family gave me the strength to fight for my life. Without the ACA my medical care would have bankrupted my family. My family would have lost everything trying to pay for COBRA insurance, medical bills and I would have most likely died. My ACA plan saved my life and saved my family. 

I was extremely blessed to have a job that included Long Term Disability Insurance benefits as part of my employment package. It took another year and a half to apply for and receive those Long Term Disability Insurance Benefits from my previous employer. We cashed in my retirement plan and barely scraped by for a year and a half waiting for those Long Term Disability benefits to be finally awarded. It took an additional year beyond that for me to be awarded Social Security Disability Insurance benefits. It took nearly three years from when I collapsed on my living room floor until I received my first disability benefits. If I had not had that ACA plan my medical bills would have bankrupted my family while we waited for my disability insurance to be awarded.  I know I would have died and it would have financially ruined my family as well.

I live with a serious medical condition, which requires ongoing medical treatment including daily IV infusions, and multiple intravenous medications, all of which would be completely unaffordable without health insurance. Without health insurance, it would be impossible to afford my medical care and I cannot treat my condition through Emergency Room visits. There is no way to treat my medical condition by going to the ER, the way some legislators have so callously suggested.

My ACA insurance plan coverage allows me to stay at home, getting the vital medical care I need daily to stay alive while being able to be close to my family. This means so very much to be treated in my own home instead of spending weeks on end in a hospital. If the ACA is repealed, I will be at great risk for losing access to affordable healthcare because I have a pre-existing condition and will be placed in "high risk pools". I live on a fixed income, receiving Long Term Disability Insurance Benefits from my employer, and my medical expenses will only increase. I am one of those people who will need assistance to be able to continue to afford my health care but I don't want to have to become completely dependent on Medicaid. I worked hard all my life, to have a job with the kind of benefits that are helping my stay independent. I receive Long Term Disability Insurance benefits from my employer because I worked hard to have a job which included those benefits. I worked hard all my life and I want to pay for my own health care. I do not want to feel like a burden to my family. I do not want to feel like a burden to society. I am terrified that repealing the ACA will cause me to not be able to afford health insurance. Without access to medical care I will die and my family will be at great risk of bankruptcy in attempting to afford medical care for me. 

I spent my life working hard; I always had a job from high school onward and all through college and graduate school. I often worked two and three jobs while getting, Bachelors degree, my Master's degree and then PhD. After I finished my education, I became an educator, working as a college professor and years later coordinating higher education reform programs for our nation's oldest and most prestigious nonprofit education reform foundation. I worked hard all my life to achieve the American dream, becoming highly educated, and employed in a field that was actively working to change our country for the better. I was a homeowner raising my family. I was a taxpayer involved in my community; volunteering for nonprofits that helped disabled veterans and rescued shelter dogs. I was achieving my American dream, while working and volunteering to help many others realize their own American dreams. And it all came crashing down in an instant as my life changed on May 17, 2013, and had it not been for the ACA I would have died. The ACA made it possible for me to see my children graduate high school and head off to college.

I want to live to see them get married and have their own children. I want to live and have at least part of the life I worked so hard for all those years. I fear without the ACA I will not have a chance to see my own grand children. I fight tooth and nail every day to stay alive and fighting to survive this medical condition should be all I have to fight for right now because that is more than enough to fight for everyday. Without the ACA I fear I will have to fight to try and afford any medical care at all much less what I need to live. It is hard enough to stay strong and fight to stay alive for my family when I have access to good medical care.

I should not have to worry everyday that congress will vote to take away my access to affordable healthcare and my ability to fight to stay alive.

I should not have to worry that my family will be financially ruined just trying to keep me alive. That is not part of the American dream.

Sincerely, a voter and American dreamer,

Do You Feel Lucky?!?

If the former Vice President of the United States has to sell his home to pay for his son's cancer treatments, then what will the rest of us do when facing a serious medical illness? One in three American will get a cancer diagnosis, one in three. Look to your left, then look to your right; which one will get cancer among you? Will you sell you house to afford chemo? Fighting through serious illness takes every bit of of your energy and when you add on the burden of medical costs with the idea that you must sell everything your own and worked hard for all your life so you or your loved one can have a chance to live is unthinkable. Setting up a Go Fund Me page to beg friends and neighbors to help you pay for a medical treatment is humiliating and it has become the norm in families experiencing serious illness. One in three will get a cancer diagnosis, one in five will become disabled and we as a nation have to do better. Biden told the world about his experience with almost selling his home to pay for his son Bo's cancer treatment when speaking on Thursday, January 12, 2017. (https://www.washingtonpost.com/news/post-politics/wp/2016/01/12/vice-president-biden-obama-offered-financial-help-when-his-son-beau-biden-was-ill-with-brain-cancer/?utm_term=.d38fd8662bec)
Make No Mistake: if the protections of the ACA that prevent insurance companies from denying you coverage due to pre-existing conditions, deny coverage because of a Life Time Cap, or mandate that every policy must include the same fundamental coverage. Medical costs will skyrocket. Premiums will rise unlike anything we saw during Obamacare and 20 million people will not be able to afford any health insurance. They will go back to ignoring symptoms, not seeking treatment for minor medical conditions that are preventible and they will get sicker and sicker. Those minor illnesses will become major illnesses and when they finally go into the hospital with diseases in the most expensive end stages it will cost the taxpayers billions. There are huge costs to repealing the ACA.

The ACA is not perfect but it is working for 20 million people who now have health insurance and of those 20 million 93% are very satisfied with their medical care. When a patient comes in with an infection we work to fix their condition, giving them antibiotics. What the GOP is proposing is like walking through the hospital and shooting every patient in head. Now this analogy is harsh but it is exactly what congress is doing when they talk about "gutting" the ACA. Their "gutting" the ACA will also put the gun to the heads of 20 million people who will lose their health insurance. Why not work to fix the problems, keep what is good and fix the rest? Why "gut" a law and start over? When Social Security was first introduced it only covered widows and orphans. In fact we as a nation created Social Security because we got tired of seeing widows and orphans begging on every street corner, and dying in poverty. We as a nation decided we could no longer look away and let innocent people suffer because of the death of their family's provider. After Social Security was formed we quickly noticed problems and we as a nation worked to fix them. After several amendments and changes we now have a Social Security program that successfully covers most of our citizens. We as a nation worked to make the changes to make the program into what it is today and today it does indeed work successfully for most of our citizens. Once people figured out that Social Security actually provided much needed support for their families they fought to keep it. So if we can work to fix the problems we had with Social Security and change it over time into one of our most important social programs, then why can't our congress work to make the same kind of meaningful changes to the Affordable Care Act/Obamacare? If our Congress is really all about providing affordable healthcare to all of our citizens then why 'gut' the most successful healthcare reform legislation in our nation's history? Why not fix the problems and strengthen what is working? Why not keep the 20 million who now have healthcare on their health care insurance and try to add more? Why would we 'gut' the law and start over from the beginning which would throw millions off of their insurance and drop millions more from Medicaid? WHY?
Because it has never been about providing affordable health care for you and your family.

Protests Against ACA repeal, January 2017 in Ohio.

The GOP keeps saying that Obamacare/ACA will collapse and that health insurance companies are not making any money. But the claim that corporations are losing money on Obamacare ignores the record-breaking profits and compensation packages that health insurers continue to collect.

"Consider UnitedHealth, the nation's largest health insurer that is leaving the marketplace next year. UnitedHealth claims that Obamacare has reduced its 2016 earnings by $850 million. While they might have $850 million less than they wanted, UntedHealth’s profits are still soaring. In fact, UnitedHealth announced record-breaking profits in 2015, followed by an even better year this year. In July 2016, UnitedHealth celebrated revenues that quarter totalling $46.5 billion, an increase of $10 billion since the same time last year. And company filings show that UnitedHealth’s CEO Stephen J. Hemsley made over $20 million in 2015. To be fair, that is a pay cut. The previous year, in 2014, Hemsley took home $66 million in compensation." (“Health insurance industry rakes in billions while blaming Obamacare for losses” by Amy Martyn, Consumer Affairs Magazine,11/01/2016.)
The GOP plan is to remove all restrictions and let the free market sort itself out. But the Free Market is not about providing affordable health care, the Health Insurance Companies are for profit and they will always value profit over human life. They proved that for decades before the ACA and immediately after the ACA is appealed they will launch into getting more profit. The free market will be great for wealthy families which 99% of you are NOT.  

You will have your own health care premiums rise.

You will know some one who loses their insurance. 

You will know someone who will die because of this new GOP healthcare bill.

Protests against repealing the ACA in Virginia, February 2017

Make no mistake the new GOP healthcare reform bill will cost millions of people access to health care. AARP came out strongly against the new healthcare bill on Wednesday, March 8, 2017. The American Academy of Actuaries have published a lengthy response to how the GOP's new American Heath Care Act will cause premiums to raise a by more than 30% in the first year alone and will see that 32 million people will not be able to afford any kind of health care insurance. The actuaries, the people trained to figure out what this plan will cost have stated this plan will cost far more than any ACA plan ever did while dumping 32 million people off their health care plans.  The American Medical Association (AMA) has also denounced the new GOP Health care act will cause serious and permanent damage to our national health. The AMA brought up how the new health care act will defund the Center's of Disease Control's (CDC) annual budget leaving our nation particularly vulnerable to new and dangerous outbreaks of disease. In the last couple of days, other major physician groups,including the American College of Physicians, the American Academy of Family Physicians and the American Psychiatric Association, have said they have serious issues with or outright oppose the plan.The Academy’s Health Practice Council (HPC) recently released a detailed report of how much damage this new GOP American Health Care Act, 2017 will damage our nationl health care system by sending smaller regional hospitals into financial ruin. 

What is so troubling about the new American Health Care Act of 2017 is how they have shifted the federal money away from those poorer people who needed help to afford to buy health insurance and now giving that money to people who can already completely afford to buy their own insurance. So this new bill gives a refundable tax credit based on age instead of income. That means people who are millionaires and billionaires will get the same tax refund credit that a low income person will get. This is crazy and it is a total waste of your tax payer dollars. For all those people who were pissed off that some low income person got a subsidy to pay for their healthcare insurance because they somehow did not deserve it - how pissed are you going to be that Bill Gates is going to get a tax credit. Millionaire's and Billionaire's do not need any more help from our government. This is just insane.  

Kicking low income people off Medicaid and making it impossible to them to afford buying any type of health insurance WILL COST ALL TAX PAYERS BILLIONS. Removing people from healthcare will only make the problem worse, because people will still get sick, people will still develop diseases like cancer, heart disease and diabetes, people will continue to be injured and all of those medical care costs will be exponentially more expensive when they do not have health insurance coverage. Their medical bills will cause an endless string of bankruptcies resulting in families losing their homes and their jobs and ending up on the rolls of social programs. The loss of their homes will lower property values in their neighborhoods. Their unpaid medical bills will have to be written off by hospitals and will negatively effect the very fragile budgets of smaller regional hospitals; resulting in the closure of thousands of hospitals across the country. When those smaller hospitals close all of the medical staff will loose their jobs; resulting millions of doctors, nurses, medical techs and other staff will lose their jobs.  And all the while people will still being getting sick, still be diagnosed with diseases and still becoming injured. Those people who have lost their health insurance will still come to work with they develop a cold because they can't afford to see a doctor, and their untreated cold and/or flu will be spread through out their offices resulting in major hits to productivity in every company where this occurs. One sick person coming into the office without being treated can spread their illness to half the workplace. Untreated patients spread their germs at the office, when they are getting lunch, as they pick up their children form school, when they go grocery shopping and those germs mutate into stronger strains of the disease causing more people to need treatment. All of those people who develop more serious chronic diseases like heart disease, diabetes and cancer all of these diseases progress without preventive testament into extremely expensive conditions and as thousands of hospitals close, beds to treat these serious conditions become less and less. There are very serious diseases which are now under control in the general public because people who have them are receiving medical treatment. Hospitalizations and deaths from HIV and Hepatitis are at a twenty year low because of people having affordable access to healthcare. As patients with these diseases are removed from Medicaid and or can no longer afford health insurance their under control conditions will rapidly grow out of control. There is a disturbing and deeply misinformed idea among GOP supporters that people with these type of diseases will just die off and we will be better off without them around. This could not be farther form the truth. Remember back to the levels of contagion from the early 1980's and how fast and how deadly these conditions were when we did not have successful treatments for HIV.  There is no difference in what happens when you don't treat an epidemic because you don't have the medications and not treating the epidemic because you can't afford the medications - the outcomes are the same patients viral loads will become higher and they will be come more contagious and the levels of contagion will effect the greater public. We have forgotten the levels of public fear that surrounded these diseases when we did not have effective medical treatments, and without affordable healthcare for these patients these serious and deadly contagious diseases will start infecting the greater public. Removing affordable access to healthcare for more than 32 million people will cost tax payers billions, it will negatively effect our nation's productivity and our national economy. The new GOP American Health Care Act will cost us all and because this bill irresponsibly gives tax credits to the wealthy and removes taxes on the most wealthy; this bill will successful transfer 600 billion in wealth from middle and low income family to the wealthiest families.  
It is time we as a nation stop rationalizing that access to medical care is only for those who are lucky enough to afford it. And it is luck. Because no matter of hard work will protect you if you are diagnosed with cancer and have to take time off from work to get chemo and radiation. Medical care for serious conditions is the number one cause of bankruptcy in our country. The number one cause of bankruptcy in our country is from medical bills. So no amount of education, or years of experience, or skill at your job will keep you and your family from going bankrupt from medical bills if you get a serious diagnosis. The only thing standing between you and your family going bankrupt because of medical bills is LUCK. For too many decades we have listened to the hateful divisive rhetoric of the GOP that has convinced a large portion of our population that poor people are poor because they are lazy, and that poor people do not deserve to have access to medical care. We have been convinced that we as a nation should let our lower income citizens rot and die on street corners. It only takes one diagnosis, one accident, one unlucky medical crisis and your family will lose everything. And once you lose everything according to the GOP rhetoric you no longer deserve healthcare. If our own Vice President almost has to seek his home in order to pay for his son'd cancer treatment then what hope do the rest of us have? If six months of treating cancer costs you your home, your job, and your savings just to survive, then what do you do when you do survive? How do you recovery from your recovery? 

Protests against repealing the ACA and cutting Medicaid/Medicare at Congressional Patrick Meehan's District Office, March 2017.

The Affordable Care Act/Obamacare is by no means perfect but it has moved our country to a much needed change in how we approach healthcare for our entire population. By providing preventative medical care for all our citizens over time will eventually result in lower medical costs for all because patients will less likely to develop more expensive medical conditions and will need far less ongoing medical care. Contrary to the statements made by GOP leaders, that the ACA is a disaster or is dying or is self destructing - the ACA is more popular than ever and we have more Americans enrolled in health insurance coverage than ever before. Contrary to the lies that the GOP leadership spread about how everyone on ACA plans would see a huge premium hike - in reality only 3% of those covered on ACA plans actually experienced that rate hike, the rest did not notice a premium hike because it was offset by their subsidy. As of January 15, 2017 the American Medical Association reported that 93% of people who are covered by an ACA/Obamacare health insurance are very satisfied with their health care coverage and do not want it to be taken away. Another thing to realize is that the majority of people who will be negatively effected by a repeal of the ACA/Obamacare are those who make less than 200K a year, and are self employed. Think about that for a moment, do you make less than 200K a year and are you self employed or work for a company which does not provide health issuance and are forced to buy your own health insurance? If you are you, better pray you and every member of your family is real lucky and real lucky for the rest of their lives.
You gotta ask yourself one question: Do you feel lucky? Well do ya? 

In twelve days . . .

[ Jeff and I celebrating just before my birthday 2006. ]

In twelve days I will mark a milestone birthday. It is a normal milestone birthday for most people to turn 45 but for me it is monumental because 15 years ago when I was first diagnosed with my medical condition I was informed by multiple doctors that I would not survive this long. I was told by nearly every medical professional that my condition would progress and end in my death within 5-6 years. Every bit of research I read confirmed their diagnosis, that I would not make it to 45. I have, or at least in 12 days I will.

[ My 35th birthday ]

I have survived against the odds, against the intention of medical insurance to deny my access to treatments, against the incredible cost of those treatments. I survived because I am highly educated and when necessary sought more education around my medical condition; reading every study, every article, and always asking questions.

[ Hospital stay 2006, two months after my birthday.]

I survived because I refused to work with doctors who did not have the time or energy to help me fight for the necessary treatments and medications when my insurance denied it. I survived because I fought with every health insurance rep who denied my treatments.

[ Hospital 2007 ]

I survived because I was meticulous in gathering my paperwork and medical records and able to write convincing arguments about why the medical treatment was necessary. I survived because I fought for my right to be treated at home, with home nursing that cost far less than in patient hospital stays where I would be exposed to life threatening infections.  I survived because brought copies of all those medical journals, studies and articles into my doctor's appointments to discuss the findings. I survived because when doctors did not listen to me I searched for and found new doctors. I survived because I carry my medical records with me when I go into the ER to prevent surgeons from cutting me open again to look around.

[ First big rounds of infusions, 2007 - I sit in that chair daily for 6 hours for the two weeks leading up to my birthday ]

[ Spent my birthday in 2008 - in the hospital ]

I survived because I spent thousands of hours on the phone arguing with health insurance reps refusing to let it go. I survived because I spent thousands of hours writing and editing convincing arguments outlining why this treatment was more effective and less expensive. 

I survived because I recorded all my conversations with all those insurance reps and could and would play back those previous conversations when it helped prove my case. I survived because the ACA was passed and prevented health insurance from denying me access to healthcare because of a previous condition and prevented life time caps to my medical treatment.

2009, following week of infusions for Iron - my Birthday.

I survived because I have diligently logged my symptoms, noting time, severity, and any related causes. I survived because I keep a meticulous journal of everything piece of for I put into my mouth and every drop of liquid I drink with the times they were consumed so I can cross reference what food or beverage would cause an obstruction. I survived because I researched pain medications and worked with doctors to develop a multiple ways to manage pain. I survived because I realized that my mental health greatly influenced my physical health and stress in particular exacerbates everything. I have survived because I demanded every nurse follow infection prevention protocol especially when they were too busy to spend the time doing so. I survived because I researched and demanded new trial medications. I survived because I did not let fear or shame prevent me from using medical devises in public. I survived because I did not allow fear or shame prevent me from pursuing every State and national resource to maintain access to medical care. I survived because I put in the thought and effort every single day, in every way possible.

[ 2010, disneyland near my birthday. ]

In twelve days I will celebrate still being alive. In twelve days I will rejoice in all of the wonderful moments in my life I worked to enjoy. In twelve days I will revel in my accomplishments, and remember what my doctor told me last week. She said that I am alive because I am one of the, "most proactive and educated patients she has ever had", and that, "my survival has been a direct result of my conscious decisions, unshakable attitude and enduring sense of humor." She went on to say, "you don't just keep fighting, I have lots of patients who are fighting. You understood from the beginning that never giving up was just the first step. You ask questions, stay informed, read and research and you push me to do the same. You understood that you had to take control of your own medical treatment. More importantly, you do it with grace and with humor. I wish I could teach all my patients to approach their conditions the way you do." I cannot express how validated that made me feel. So many of the interactions I have had with medical professionals have left me questioning everything about myself. Advocating for your own medical care is always difficult but add to it a rare condition and it exponentially ramps up the difficulty. Searching for and finding a doctor who you trust and who you think will fight for you is priceless. When you find a doctor who is all of that, you do what ever you can to keep them because it will mean your life. I have been her patient for over a decade and she has been there for every step in the progression of my medical condition. This is why I drive two hours to see her now.

Infusion time again, 2011 and guess what it is my Birthday

For those who do not know or do not remember, I have Short Gut. I lost most of my small intestines to an infection following an abdominal surgery in 2001. My lack of small intestine prevents my GI tract from absorbing vitamins and minerals. This causes chronic severe dehydration which is life threatening and requires me to be connected to an IV through a port in my chest. The IV infusion treatment delivers all the necessary fluids, vitamins, proteins, and nutrients to my body through my artery. My inability to absorb vitamins and minerals causes a whole host of other conditions that negatively affect every system in my body. I lose bone marrow and then stop producing red blood cells. My body strips the calcium out of my skeleton which leaves my bones weak. The scar tissue in my gut continually causes bowel obstructions. My chronic dehydration places huge amount of strain on my kidneys and liver, which is further exacerbated by my dependence on IV infusion and Total Parental Nutrition (TPN). 

[ Dec. 2013, week of my birthday: My first infusion center trip with Ellie my service dog ]

[ My R2D2 IV pump, this is my first portable IV pump and gives me the ability to move around during treatment days - Summer 2015 ]

Your body is not designed to receive the bulk of it's fluids and nutrition through your arteries. The flow of thousands of milliliters of fluid into your bloodstream negatively effects your internal organs, especially the kidneys and liver. The stress of filtering all those artificial fluids, vitamins and medications takes a real toil on the liver and kidneys. Most TPN patients experience renal failure. The other big side effect from constant IV infusions is the ever present risk of Sepsis. Every time a needle goes into my port there is a risk of getting an infection in my bloodstream. Every time the IV line is opened, every time a medication is added into the IV line and every time the IV bag is changed there is a chance of introducing bacteria into my blood stream. TPN Patients a have high risk of septic infections.

2014, in hospital with both service dogs (mine and my husband's)
they are ganging up on me to make sure I am well cared for.

Patients who have already had sepsis are at a greater risk of contracting it again. I have had sepsis three times. Most patients who are on TPN do not survive longer than ten years, with the most common cause of death coming from sepsis or liver/kidney failure. I have always understood that my time was borrowed and that I would most likely die from side effects to my medical treatment, as in liver failure or sepsis. Last week I was hospitalized for severe pain in my chest and abdomen which turned out to be coming from inflammation of my liver. Chronic dehydration has causes sludge to develop in the bile duct and is obstructing that same duct, which is causing the bile to back up into my liver and making it very unhappy. When your liver is unhappy it is very unpleasant for the rest of your body. And my liver is very, very unhappy, which means I have intense pain.

Nov 2016 - Antibiotic Auto Infusion Ball - this cool little ball is designed to give the timed dose of antibiotics into my IV line without having to use an IV pump - which allows me to take it with me and still get the medication I need.

I am used to living with severe pain, but liver pain is a huge new level of intensity. I have not developed the coping skills to handle this new pain so my doctors placed me on high levels of pain meds. I am back on IV infusions with fluids, antibiotics, and steroids. This signals a turning point in the progression on my condition. When you start experiencing liver and kidney trouble you have moved to a whole other level. Or as I like to refer to it, I have leveled up! I have officially moved into that portion of the progression where the constant stress placed on my internal organs is starting to cause inflammation and eventually failure. This is a significant step towards the door in terms of my medical condition. And this new step forward in particularly devastating for many reasons:

[ Ellie and I resting together, I am getting infusion at Home with  the help of home nursing care, 2012 two weeks before my birthday ]

1. I was doing so well: The IV Infusion treatments were going so well: I started on this IV infusion maintenance treatment in June of 2015 and since then I have had remarkable success. My numbers have not been this good or this stable in a decade. I had more energy and began to feel somewhat normal again.

2. I found new meds: I have been reccomended to start a new treatment that is revolutionary and holds great promise. The injections make the cells in your intestines grow and therefore assisting in absorption in the intestines, with the idea that the new cells could allow me to spend less time on infusions. The treatment is exciting and has the potential to be life changing - granting me years more.

3. Just when I was ready to celebrate: I am approaching the milestone birthday that every doctor swore up and down I would never see. Why do i always hit the turning points right when I think i am finally winning?!?

[ Disneyland 2014, for my birthday. ]

[ Navigating Disneyland for my birthday - going to the happiest place on earth with a PICC line in is tricky, but it is also a much needed distraction. Disney has become the much needed respite for me because they are so good with disabled accessibility. I am able to go there and feel safe, and I can feel human again because of how they assist guests. Trust me when you are dying - Disneyland is a great distraction and safe way to escape. ]

So looking around and taking stock of where I am:

I am coming to terms with having leveled up toward the end of the game while simultaneously passing the birthday I was never supposed to live beyond. I feel conflicted to say the least. Why now when everything was finally working? It feels like two steps forward and three steps back. I can tell you that these kind of hilarious paradoxes become the norm the further down the rabbit hole of terminal illness you go. Which just so happens to be a great source of humor and continual reminder to take nothing for granted. That new medical treatment I am so jazzed about - it uses one life threatening disease to treat another. In my case the medication causes a 'controlled cancer rate' in my intestines; the idea is that the new cells will absorb enough to allow me to have fewer IV infusions. Fewer infusions means less risk of organ failure and sepsis. So the idea is the benefit of the new level of absorption outweighs risk of the controlled cancer becoming uncontrolled. The major draw back (besides possible bowel cancer) is that the new growing cells also cause a huge amount of pain. So much so that most patients are prescribed morphine in similar dosage to actual bowel cancer patients. The growth of the cells will stop when the medication is stopped for most patients, but in 30% there is real risk of the cells continuing to grow and becoming cancerous. Only in terminal world do you think it is exciting and promising to grow new cells through bowel cancer. When you are in the Hail Mary stage of the game - you begin to consider all the option even the ones you never thought you would.

As I look back over all the years I have been dealing with this, I have a lot of pictures of me in the hospital or in treatment somewhere. I noticed that I have spent so many birthdays in the hospital. I thought, "holy shit I have been in the hospital on nearly every birthday." But then I realized it is not being in the hospital that is weird, that is more my norm. It is having birthdays that is the odd thing. For some reason that made me giggle. Oh and that reminds me, I survived because I giggle a lot. I also survived because I made the choice to be with a partner who giggled a lot too. We survive together, giggling along the way.

In twelve days I will celebrate my 45th birthday. I am not sure how or where I will celebrate it, but I am sure at some point there will be dancing. I will roll my little R2D2 IV infusion pump case along with my service dog, Ellie out to the middle of the dance floor to dance. 
I will dance in joy. 
I will dance in defiance.
I will dance in self accepting love.  

I will enjoy the day, mark it with celebration and cherish all those who are there with me. Cause in twelve days I turn 45 years old. Forty Fuckin Five and that is a good good thing. So I am gonna celebrate my birthday.

Then I will get back to fighting to make it to the next one.

[ It has been a long journey through all of this - and I have been through so much. It struck me as I was going through the photos how many birthday I have been in the hospital or in an infusion center or in treatment at home. But then I remember that I am in treatment all the time. The medical treatment is normal daily life and birthdays are the weird things that happen every now and then. ]

The Obstruction Rodeo: Two Weeks NPO

The doctor confirmed today that I have a partial obstruction of my small intestine. Luckily I am already on IV infusion treatment, and that will be extended for a few weeks and I will remain under Skilled Nursing Care at home. While I am relieved to not have to be admitted into the hospital, I am not pleased that I will be NPO for at least a couple of weeks until this obstruction resolves. [Nil per os (NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons, such as a gastrointestinal obstruction. It is a Latin phrase whose usual English expansion is nothing by mouth]

Diagram of what adhesions look
like inside the intestine

I have these obstructions regularly, some do not require medical intervention but many do. In total I have had 31 that require medical intervention to resolve. They are the result of multiple abdominal surgeries which involved bowel resections and created scar tissue and adhesions. I will have these obstructions for the rest of my life. Each of these obstructions has the potential to be life ending, if the obstruction ruptures instead of resolving I will become septic and need emergency surgery to avoid death. I have known and lived with this scenario for 15 years.

TPN IV Bags - one is saline with Dextrose with
added multivitamins (yellow) The small white bag is
the Lipids or fats

 Medical technology has greatly advanced in that time. Five years ago if I experienced a major obstruction it meant I would be hospitalized for weeks on end. The non-surgical treatment is to receive all needed hydration and nutrition through an intravenous infusion, control the intense pain, and rest the gastrointestinal tract by being NPO and allow the blockage to release over time. For me surgery is only a last ditch, emergency, save my life once it ruptures option. Now this treatment can be given at home with the new portable IV pumps, and the guidance and care from skilled nursing visits. For me home is much preferable to the hospital, because of the chance for opportune infections and the extreme costs of hospital care. The only drawback to home care is that pain control is far less, but I would rather white knuckle through the pain at home than feel less in a stupor in the hospital.

You can see the size of the I bag in comparison to
the IV pump, the pump fits in your hand.

The one constant that does not ever improve is the psychological effects of being NPO for an extended time. Anyone who has had to stop all food or water before a surgery or a blood test can begin to have an idea of what that is like. Now imagine continuing that discomfort for two weeks or longer. Your mouth dries out so you have to constantly rinse and spit or swab with these yucky sponge sticks. Beyond the physical discomfort is the intense mental anguish. There have been multiple research studies on food deprivation is on par with sleep and air deprivation; meaning it will completely mess up your head in a bad way.

Like I said, this ain't my first obstruction rodeo, but it does hammer home the reality of an inevitable life changing progression of my medical condition. These obstructions will continue and my reliance on infusions for nutrition and hydration will grow until I am on what is called TPN (total parenteral nutrition), where all of my body's nutrition and hydration will be supplied through my veins directly into my blood stream, skipping my GI tract and it means living my life on NPO. The idea of one day never tasting cheese or fresh milk, or chocolate or fresh baked bread suddenly feels all too real. It makes me wonder about quality of life and what is enough.

When so much of our social constructs revolve around food, the eating of it and the sharing of it; the idea of never eating again seems like a big hit to the quality of life category. I know there are people who survive on TPN, most research though does show full dependence on TPN causes serious kidney and liver damage and the life expectancy is roughly 2 years. This is why the team of GI specialists that I work with are doing everything we can to delay the process of having to depend solely on TPN. It is hard for me to wrap my head around living without eating. And don't get me started on the financial burden that medical treatment will become, TPN is far more expensive than almost any external food sourced diet, like 5X more expensive. I have known the TPN thing was an inevitable progression for nearly a decade, it has been looming in the back ground as one of the final boxes on the check list of things that will occur in my final stages of my life. For a decade it has been the boogieman far off in the shadows, too far to really think about because it was too scary and part of the signs that the end is really approaching.

Fortunately for now I am only NPO for the next two weeks, but it certainly gives me food for thought.

The IV bag loaded into the back pack along with the Cadd IV Pump and the high volume tubing set.

The IV Pump back pack rides inside a modified suitcase housing - this
allows the whole thing to roll on four wheels. With a full IV bag, pump and
battery power pack it weighs about 50lbs.

With the suit case housing closed - it rides along like R2D2 - makes it less scary.

The Cycle of Healing; Training the Trainer and Saving a Life

Circa 2011, Jeff Wilson working as a mentor trainer
under the guidance of OperationFreedom Paws
founder, Mary Cortani.

Seems like a lifetime ago, things were just starting with Jeff becoming a mentor trainer at Operation Freedom Paws. I was watching my husband starting to learn he had a real talent for connecting to veterans and helping them train at OFP. I remember being so proud watching him come alive again in helping others. He has such a remarkable heart and the makings of a fine educator.

Jeff never fully believed in his intelligence and talent and it has been my pleasure assist him in finding it in his own way. At first it was a small gift of art supplies and picnics by the lake to inspire him to sketch. Then later it was helping him realize his dream to return to finish his degrees and strongly suggesting to add more art course in his electives. Then suggesting he offer to share his experiences with younger veterans at the Veteran's center's at his colleges.

Then he called me to stop by a pet shop on the other side of town after a long work day to meet a rescue dog. I drove up to see Lobo curled in his lap. I parked, walked in and bought dog food, a crate and toys. When he asked if I would think it was weak for him to train with Lobo to become a service dog I said, "I support you totally." Training with Lobo gave him courage, and as he entered public with Lobo by his side people wanted to know about him. As they asked what happened, Lobo gave him the courage to speak about it. When asked if I would be embarrassed by him sharing his story about suffering from PTSD publicly, I said, "I got your back baby." The surge of passion that poured out of him as he began to work with Mary Cortani, Janet Wenholtz, Megan Landry Wenhotlz and all the staff and clients of OFP transformed him. I proudly watched as Jeff picked up this new mantle of working to help his brothers and sisters in arms.

 We gained a family of dear friends in those early classes. Back then I was still working long hours and our time together could only occur if I accompanied him to training classes on the weekends. I would nap in the car on the hour and a half long rides to and from training. I started spending my Saturday's in training class, sitting and watching at first. As my inability to keep still took over, I began to help out in working with some of the foster dogs. We came early to sweep the pigeon poop off the old warehouse floor, empty trash, scrub out water bowls and line up the chairs in my OCD way. In every class I watched him gain confidence in speaking, confidence in demonstrating complex concepts in the training and confidence in reaching out to those he was teaching. He was watching his students and becoming able to discern how to approach them when they hit the tough moments. Even as he hit one of the toughest moments himself, losing his own service dog Lobo in tragedy, he went back to the work. When the whole world crashed down around him he was called back to the work. Thinking of how his experience could help others. He had made the connection between sharing and teaching, of how opening his heart with all it's pain could speak directly into someone else's pain and how healing that connection could be.

Jeff leading a service dog training exercise with
his service dog Lobo, 2012.

Jeff and Lobo in training class at OFP, 2012.

I remember with deep love the first time one of the clients told me how they felt they could trust Jeff and through that trust he had help them. On the nights I worked too late to accompany him to class, he would bring his students home to me in the form of stories about their break through a in training. In his stories he brought them into his heart and held them there, surrounding them in his care. He cried for their pain and he rejoiced in their accomplishments.

Jeff and Lobo, during a photo shoot with Vicki Topaz,
for her film and photo exhibit of
HEAL! Veteran's Speak About PTSD

When I met new clients in those Saturday classes I heard his stories of their valiant deeds in my head. He was becoming the kind of educator that lives and breathes in his students journeys. He was all in with them on the ride, hands up screaming and laughing as the coaster dropped their stomachs in failures and swept them back up in success. He came home excited to Go back. Watching him soak up the knowledge from his mentor Mary and then apply it, made me so proud.

Jeff working with Selah in training class
for the first time in the weeks following
Lobo's loss. She seemed to know
instinctively how much hurt he felt, she
forced her way into his arms daily, like the
big lumbering, adorable lump of love that
she is.  From the first afternoon, when Mary
brought her into our courtyard, she barreled
up to Jeff and jumped into his arms. Selah was
determined that he would pay attention to her.  

Years later when my own medical condition took my work and dreams from me, I was incredibly proud of how he never let up on me as a student. Even on those really hard days when my tears and pain pulled at his husband's heart he worked from his teacher's determination to help me learn and pushed me to work through my pain. Seeing him successfully strike that delicate balance between loving care taker and teacher was one of my proudest moments. I often speak of how Mary, Janet and all the trainers helped me so much during that journey to become a service team. What I have never spoken of is how much Jeff helped me, even though we were never allowed to work in the same training groups in class proper. He watched me, critiqued me, drilled me and challenged me to keep on when I thought I was not strong enough.

Selah and Jeff demonstrating Puppy Yoga, a
detailed cognitive behavioral meditation
that is taught at OFP.

He is always the last to take credit, the last to tell you about his accomplishments or believe in his talents. I often say I will be eternally grateful for how Operation Freedom Paws changed both our lives for the better. I have not adequately expressed how grateful I am to Mary at OFP for recognizing what I have always seen in Jeff and mentoring him to find his passion for helping veterans and developing his talents as an educator.

Jeff at training class for OFP, 2015. Five years later.

Yes, that first picture at the top seems a lifetime away; a blessed beginning to a life changing relationship and shared passion to change this world for the better. A quality I always recognized and fell in love with all those years ago. A quality I am still so proud to support.

Jeff and Selah in a follow-up photo shoot with Vicki Topaz, for
HEAL! Veteran's Speak About PTSD, 2013.

Selah and Jeff working together, teaching
a training class at the new
Canine Education Center at
Operation Freedom Paws, 2015.

Jeff and Selah in front of the poster of
Heal! Veteran's Speak About PTSD
which features Jeff and Lobo,
the cycle of healing in a photo. 2015.

Jeff and Selah in their favorite position, this is how I see them, locked in love and happy as can be to be with each other.  Selah is a blessing, a big fluffy, tail waggin', slobbery, lumping mess and He would not have it any other way.