Category Archives: disability

The Better Care Reconcilation Act: Explained

Majority Leader Mitch McConnell. Photo by NPR.
Yesterday, the United States Senate unveiled their plans for a new health care bill, titled the Better Care Reconciliation Act. 

What changes with the new healthcare bill?

Unlike the Affordable Care Act, the Better Care Reconciliation Act proposed by the senate will bring back lifetime limits and annual limits, meaning that once your insurance has spent a certain amount, they are no longer required to cover anything related to that diagnosis. Prior to the ACA, a common number might be one million dollars. Once the insurance company has spent that, they don’t need to spend anything else for your care. To put that in perspective: one major spinal surgery and five days in intensive care cost about five hundred thousand dollars- half of a million dollar cap. The majority of those with chronic or serious illnesses would reach their cap pretty quickly.

Under the ACA, every insurance plan is required to offer “essential benefits“. Those essential benefits are: outpatient care, emergency services, hospitalization, maternity and newborn care, mental health/substance abuse treatments, prescription drugs, rehab services, laboratory services (testing), preventative care, wellness services, chronic disease management, and pediatric services, including oral and visual care. The BCRA does not require essential benefits, meaning you could pay more or just as much for a plan that simply does not offer the same things. 
This bill slashes Medicaid by billions of dollars. What does Medicaid do? Well, direct from the Heath and Human Services website:” Medicaid provides health coverage for some low-income people, families and children, pregnant women, the elderly, and people with disabilities.” With the cuts being proposed, there will be much less money to go around. This will dramatically impact those who rely on Medicaid for health care. You can read more about how this bill will affect Medicaid here: https://www.google.com/amp/s/mobile.nytimes.com/2017/06/22/us/politics/senate-health-care-bill.amp.html
How does the bill affect taxes? Well, the BCRA will roll back most taxes associated with the Affordable Care Act, including two for those making more than 200,000 dollars a year, a medical device tax, a tax on tanning salons, and a tax on the insurance industry. It will restrict Medicaid payments to Planned Parenthood, which provides a large part of reproductive health care in the US- including prenatal care, contraception, STD screening, and abortions.
This will impact everyone, both in the private insurance market and those currently buying insurance through the government exchanges. It will no longer require employers to offer insurance, and will offer tax breaks to those making more than two hundred thousand dollars a year. This bill slashes Medicaid funding, changes how subsidies are calculated, and removes the requirement for essential benefits. It will completely change health care- and not in a good way.

Now, if you disagree with any of this, here’s what you can do. 

Contact your senators. This is particularly important when it comes to those living in red states- call/fax and let them know your concerns. Because this bill is being passed under budget reconciliation, the republicans can avoid a filibuster, but this means that they need every vote they can get, so call and share your story. This bill will cost 24 million people their health insurance in the coming years, and will effect everyone buying insurance in the private markets and on the government exchanges. 

The capital hill switchboard number is (202) 244-3121.

You can also send them a fax via the RESIST bot, which enables you to send a message easily. Text “resist” to 50409 or message the bot on Facebook. It will ask for your zip code, and then will find your senators and you can type out a message.
If you are in a blue state: call your senators and ask them to withhold consent. This will grind the senate to a halt. If you do request that, here is a script you can use if you call or text via resistbot:

“Dear Senator (Lastname), I am (Firstname Lastname), and I am calling to voice my support for you if you choose to withhold consent for Senate business over the way in which your Republican colleagues are handling the AHCA bill. Working behind closed doors on a law that would, if passed, affect one-sixth of our economy and take health insurance away from as many as 23 million people is unconscionable, and it calls for action. I want you to know that if you choose to withhold consent, and choose to slow or stop the business of the Senate in protest over the way in which the AHCA is being written, I fully support you, and you will have my vote the next time you’re up for re-election.”

And finally: educate yourself. Learn how this bill will affect you, and what it actually proposes. You can read here what this bill contains. 

We cannot let this pass. 

Catch-22

You know that phrase “There’s no such thing as a free lunch.”? It’s even more true when it comes to medical care. Everything has a price. A medication may help, but causes side effects. A procedure may be critical in helping with one thing, but then causes another system to flare. Healthcare is a series of trade-offs. Is it worth it? Is the procedure or medication absolutely necessary? Does the medication or device help enough to make it worth the negatives?In my life, the weighing of those trade-offs has become normal. Some things are essential, no matter the side effects or results- but many others are small day to day wagers, betting that the consequences will be manageable. Of course, it’s not just patients who have those choices. For everyone, life is a series of decisions and consequences, on a scale that is rarely, if ever, balanced. 
But it’s still tiring when you’re routinely coming out on the losing side. It leaves you always questioning how damaging an action might be. Mild annoyance or ER trip? Feeling bad for an hour or out of commission for a week? 

Regardless, I’m scared not to try. I worry that by not trying, that action or ability will be lost. Or worse, that no matter what I do or how hard I work, trying won’t make a difference. 

When I tip over the edge of “tolerable” there are of course physical symptoms, but also mental rebound. You might think that after years of knowing that some activities will hurt or that you’ll pay for them later, that the mental blowback would dissipate somewhat, but it hasn’t. I have more coping skills now than I did when first starting to get sick, but the actual physical symptoms aren’t less, only my capabilities to handle them. When I begin to teeter on the thin precipice of confidence and fear floods in, soon follows guilt. I’ll be angry with myself for choosing to do the activity, and terrified of the possibility that something I decided to do will cause catastrophic consequences. The idea that I am responsible for the worsened physical symptoms, rather than the normal ebbs and flows that I cannot control makes it much worse. While I try my best to make sure the decisions I do have control of are good, let’s be real here. No one makes good decisions all the time. 


When your enemy is also the thing in which you must live, it becomes a necessity to enter some sort of truce. (Similar to how even if you don’t like your roommate, you have to be somewhat nice, because you have to share a relatively small space.) One of the biggest things I struggle with is forgiving myself and my body for the setbacks.  And when I do make questionable decisions, rather than focusing on my frustrations and anger on myself, I try and concentrate on making it through the next minutes…concentrate on the things I can do to make it better, rather that agonizing over what I did to make it worse and beating myself up about it. I know it’s harder than it sounds, and I am in no means amazing at it. The majority of the time I’m frustrated and angry, and continue to wonder “If I had just….”


We all make decisions that cost in one way or another, but we can’t take those things back. After all, hindsight is always 20/20. So when you make those decisions, I know that not being angry or hurt is immeasurably difficult. But focus on not having the negative emotions be the only ones you feel. Your body is trying, and so are you. Allow your body and mind forgiveness, and allow the work in progress to continue. Setbacks happen. And feeling fear or frustration or anger doesn’t make you weak. It means you’re human.

Control and it’s absence: The Invisible Project

I’m a control freak by nature. I’m a pain about group projects, because I end up wanting to do the work myself. I dislike unpredictability, preferring a solid foundation of plans and goals. Through my illness, I’ve lost control of almost everything at one point or another. Before I got sick, my body was the one thing I always had control over, even if other things were falling apart. And suddenly  I didn’t even have that.

I’m the kid who’s had her life planned out since first grade. I was going to college, become a doctor, go to the Olympics, and then somewhere in there have six kids. I think I was pretty adamant about that, at six. As I got older, my dreams and plans evolved, but they were still concrete, and I never once imagined those things could change. When they did, my plan for my life was one of the first things I grieved. I was free-falling with no parachute, and when I crash landed somewhere in between hope and desperation, trying to find my footing on an ever slippery slope, all my carefully drawn maps and plans fell by the wayside as my world changed from living to simply surviving. For a long time, I refused to think about what would happen if I never “got better”. I refused to acknowledge the fact that my life had changed irrevocably, and that even if I woke up tomorrow cured, I’m not the same person who fell out of an airplane with nothing between me and life except for the open sky.

This past weekend, I had the immense privilege of traveling to San Francisco to attend the Invisible Project Gala. The Invisible project is a program by the U.S Pain Foundation, where they tell stories of people living with pain. I was lucky enough to participate in the Kids and Families Issue, and the experience was such a gift. There’s a lot of my journey that isn’t pleasant, to go through or to remember, but to look back and be able to own my story and who I have become- that is the greatest gift of all.

The Invisible Project isn’t about finding a way to be cured, or to be fixed. Rather, it’s about finding a way to manage and move forward. This project and it’s stories are proof that we can and will adapt, despite the odds or the circumstances. I talk about focusing on the silver linings rather than on the collateral damage, but sometimes the damage cannot be ignored. It can’t be fought through. It is simply there, and the best thing you can do is learn to keep going.

I’m no longer scared of not getting better. Sure, I’d like to. I still hope I will. This isn’t what I planned for, or what I ever expected. But this weekend, as I heard the stories of surviving and of living, I was viscerally reminded that I can do this. That my life can and will still be beautiful and strong and joyful, even if I never “get better”.

One of my all time favorite quotes is from the Lord of the Rings. “Not all those who wander are lost.” I’m still wandering. My detour hasn’t yet led me back to the main road- and maybe it never will. Life is rarely what we expect. But when I laid out my plans, all those years ago, I thought of what I wanted out of those dreams. I wanted to be happy, to be able to have those I love around me, and to watch them succeed and find joy. And those things, the things that are truly important- they can be found even in the darkest of times, even on the rockiest roads.

Strength isn’t about being cured or winning every battle that comes your way. If you take away nothing else from my story or the Invisible project, take this: we are much stronger than we first believe.

So here’s to impossible things, to surviving- to finding new roads, new lives, and to getting lost along the way.

Cheers.

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My dad and I. 

PTSD and me.

I’ve tried to sit and write this post many times, and each time I’ve written a half-hearted attempt at a paragraph, and then closed my computer, telling myself that I’ll finish it tomorrow. But no matter my comfort level, I need to speak on an issue that is too often left unvoiced and unsaid.

I’ve dealt with post-traumatic stress disorder for two years now, as a result of medical experiences. PTSD. I’ve called it “traumatic symptoms”, and “PTSD-like episodes”- but let’s call it what it is. PTSD. I’ve resented naming it for several reasons, but the biggest one is I had trouble reconciling the events with how I felt-thinking because I hadn’t gone through a war or a natural disaster that I didn’t deserve to call it PTSD. I’ve spent a lot of time telling myself that it wasn’t that bad, that I was just being a wimp who couldn’t deal with trauma. But suffering is subjective, and there’s no use saying that I can’t feel the way I do because someone else has it worse. Someone will always have it worse.

June 2014, during a short hospital stay. I had my first feeding tube placed in order to do a procedure. I couldn’t tolerate water at this point without vomiting.

Trauma as a result of medical experiences and medical mistakes is much more common than is discussed. Most of the people I know who deal with chronic and serious illnesses have some form of trauma related to medical experiences, whether it be major or minor. Even caregivers often experience trauma and anxiety. And the anxiety and depression that can accompany PTSD and  chronic illness itself is too often unrecognized and therefore untreated.

I was hospitalized on and off for about six months, including one 2 1/2 month stay. During this period, I was being hospitalized for dehydration, inability to get rid of my own waste without intervention, extreme weight loss and pain. We now know  that I was dealing with severe gastroparesis and delayed intestinal motility. At the time, I also was in a tremendous amount of head pain, and many neurological symptoms. None of these things seemed to matter. I was told that I had no physical illness, that I simply had an eating disorder, conversion or somatoform. I was told that my parents were too protective, that they were making me sick, and that they were feeding my apparent desire to skip school and get attention by pretending to have an illness. I’ve always thought that funny- if I really wanted to skip school or get attention, I’m positive I would find a way to do it that involved less pain.

Every admission, I was placed in the “behavioral unit”, the care unit for eating disorders and mental illness. Most of the treatments that were tried caused me to decline, rather than improve. I was physically injured multiple times during the admission. I’m not going to go into specifics, but it wasn’t good. I feel the most damaging things were more psychological. Trust was used against me, and things I said would be twisted, and used as reasoning for their actions. Promises would be made and then broken with the same nonchalance, and my safe spaces and coping mechanisms were whittled down to nothing, even as my body declined. The doctors refused to release me until I met certain “goals”, and yet every time I would achieve one, the goals would change. My parents wanted desperately to sign me out against medical advice, but were told that if they did, child protective services would likely be called. I was eventually released (after more than two and a half months) because a holiday doctor came on for thanksgiving weekend, and was unfamiliar enough with my case that he was willing to discharge me. I don’t know what would have happened if I had stayed, but I certainly wouldn’t be where I am now (mentally or physically).

July 2016: Pain was never controlled. At one point, after screaming in pain for hours, a doctor asked the nurse whether she could push saline and tell me it was pain medication. Fortunately 

I was understandably dealing with a fair amount of anxiety and depression at this point, but it was a result of the experiences, not the cause. The distinction is incredibly important. For example: pain causes anxiety. Anxiety can cause you to tighten and tense your body, which in turn increases pain. However, the anxiety was not the source of the original pain. I was trapped in a cycle of increasing pain and ever escalating anxiety.

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October 2014: At this point one of the few bright spots was the therapy dogs.

The mental consequences of my experiences were astronomical. I emerged from a 70 day stay a very different person than who I was prior. I was terrified of all new doctors, terrified that they wouldn’t believe that I was sick, that I was in pain, that my body and organs were failing me.  Trust was consistently used as a weapon during my stays, especially the longest one, and it’s taken a tremendous work on my part, and the proof that there ARE good doctors, to get myself out of that mentality. It’s something I still struggle with: the fear that medical professionals will be harmful, not helpful.

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October 2014: I was made to eat for the first time in months, despite the fact that I wasn’t tolerating water and was vomiting constantly. This “food trial” was done on Halloween, right before a planned trick or treating event, one I had spoken to the psychologist about being excited for. She insisted we try before the event. It did not go well.

I don’t know whether those treating me believed in what they were doing and thought that their course was in my best interest, or whether they were simply unwilling to challenge the opinions of others. I wonder if they regret it. These have rolled around in my head for quite a while, the unanswerable questions. I don’t think I’ll ever know the truth.

Recently, my health has deteriorated somewhat. A few weeks ago, physically, I felt like I was in a  very similar state to how I felt right before the admission that was so disastrous to my health, physical and mental. It’s odd that a physical feeling can launch your brain back into fear and panic. However, it’s caused me to look back at my recovery over the past two years, and realize just how far I’ve come. I’ve learned to try to trust doctors and other medical professionals again. I’ve learned that when someone asks about my mental health, it’s often not because they want to criticize me for it, but to make sure that the consequences of my physical state aren’t causing additional mental health problems. I’ve learned to try and love myself and to accept that my body and I are on the same side.

 Recovery and healing are never a straightforward process. There are bumps and ruts and moments when you feel you’ve slid backwards. But I am moving forward, just in a different way than I expected. There will always be impatience, because healing takes time, but recognize that you are moving forward. You are making progress.

August 2016: This hospitalization has triggered a lot of memories. Previously to this, I hadn’t been hospitalized in my home town since being discharged in November of 2014.

For me, moving forward and making progress has only been possible because of the support network I am so lucky to have. My immediate family, my psychiatrist, my other doctors who have understood, my friends online and in person who’ve had similar experiences. I’ve had to learn to ask for help, and I’ve learned that for help is not weakness. If anything, it shows that you’re strong enough to realize that doing this alone is impossible.

August 2016: Physically, I feel very similar to how I felt prior to being admitted 2 years ago. However, now I have doctors who have treated me with compassion and respect since the beginning.

I’ve thought often that because these events effected me so strongly, it must mean that I’m weak, or that I’m not trying hard enough to handle fears or flashbacks or panic. That I’m “doing it wrong”. But those fears aren’t the truth. And for anyone dealing with similar things- you are trying. Your feelings are valid. There is no one way to handle this, no road map where you can say “Aha! Here’s where I went wrong.” (Sometimes, I wish there was.) Honestly, much of my healing and recovery process has been building my road map, and it’s all easier said than done.

There are still moments where I feel like I can’t keep going. When a waiting room has me trying desperately to remember my coping skills, or when a doctor’s choice of words has me suddenly questioning myself and my body. There is no logic in PTSD, and though the logical part of my brain may be saying that I am safe, the parts that control my panic and fear don’t seem to get the memo.

“Sometimes the things we cannot change end up changing us.”

I have changed fundamentally in the years that have passed since I first got sick. In both positive and negative ways. You see lots of mushy quotes about how hardship makes you a better person, or that you can’t know joy without having experienced pain. And for some things, that may be the case. But the truth is that change is not always positive, and there isn’t growth from every experience. Sometimes surviving is the only thing you can do. One foot in front of the other, one minute at a time. And that’s okay. Healing is uneven, bumpy, and difficult, and it’s never the smooth process you expect or wish for.

There’s a Japanese word, kintsukuroi. It means “to repair with gold”. It’s the art of mending broken pottery with gold or silver lacquer, and the pieces become “more beautiful for having been broken”. I like to think of my body and brain like that: beautiful not in spite of flaws, but because of them. That I am more than I was before, not in spite of the challenges, but as a result of them. Heart and brain and body all mended with silver thread and gold, held together by silver linings.

November 29, 2014. Discharged, after 70 days inpatient

So, is this going to be long term? 

Recently, I was asked the question, “Do you think this will be a long term thing?” This was referring to some recent concerning symptoms and I had made the request for a piece of equipment- a wheelchair that fits me and is lighter and more easily maneuverable. Now, anyone who’s ever looked at those things knows that they are not cheap, and so often the process for insurance approval is long. Now, my all seeing eye to the future was on holiday, so my answer to the doctor was “I don’t know.”

When I first got sick, I thought it would be a few weeks until it got better. Maybe a month. I never looked at my illness as “chronic” until I’d been dealing with it for the better part of six months. And even then, I wanted to avoid doing certain things because I was just going to get better. As of now, I’m still waiting. (Any day now, right?)

As my illness has gotten longer, and as it continues without a visible end, my perspective on many things have changed, as you would expect. One of those things is acceptance. I’ve been trying hard to love my body, without faulting it for it’s limitations. Of course, this is easier said than done. But one of the hardest things for me that prevented me from accepting my body that niggling fear that acceptance means giving up or giving in. That if I say, yes, this is the reality right now, that it means leaving behind the idea that I’ll ever get better.

My 18th birthday.
In my mind, at least recently, the idea of acceptance has changed. It doesn’t mean giving up the idea of ever getting better, or even the idea It means trying to move forward from the idea that me and my body are on opposing sides of a war that many days has no clear victor. It means focusing on the fact that my body has fought so hard to live and to thrive, and that I’m proud of it for doing so. I’m sure as hell going to continue to fight to be healthy. But I also will fight to live the best possible life I can in the body that has carried me this far, the body that despite all the craziness that has been thrown at it, is still going. And living the best life possible? That sounds like the furthest thing from giving up.

My service dog, Taxi, and I.

Unpredictable: the name of the game. 


Life with a chronic illness means a lot of uncertainty. A lot of waiting. It comes with the turf- I haven’t met a single person who doesn’t struggle to some degree with the uncertainty and the waiting game. Bodies are unpredictable, so we don’t know how we will be from day to day.
Recently, I’ve been struggling even more so with this. I’ve been dealing with severe allergies, requiring me to wear a mask and be extremely careful with what I come into contact with. Six bouts of anaphylaxis in the past few weeks..you could say I’m a little on edge.
It can be quite scary and unsettling when you wake up and have no idea whether you will have a good day, or whether you’ll be in the ER needing breathing treatments and epinephrine. Additionally, sometimes it feels like despite all the difficult and dangerous symptoms, you and your medical team aren’t doing enough to fix the problem. Do not pass go, do not collect 200$.
I’ve really had to remember the past few weeks that I can and will get through this. These are some tips for dealing with it all.
One of the most important things to remember when you’re in this situation is to stay calm. Stress impacts how your body will respond. I know it’s hard to stay calm when you are experiencing scary symptoms (this is something I struggle with) but keeping your mind calm is helpful.
Distract yourself when symptoms are tough. This is something that helps me chill out when I’m worried or upset. Watch a movie, color in a coloring book, listen to an audiobook or talk to a friend. Find something that works for you, and use it.
Focus on the positives in the day. Small improvements are still improvements. This is so hard to remember, especially when it seems like you are sliding backwards. Even the daily improvements are a huge deal. Sometimes when I am struggling, I try to make a mental list of what has gotten better. This helps me stay positive and motivated.
Reward yourself. This is not easy! Dealing with symptoms and medical treatment on a daily basis is draining. Try small rewards that you can focus on and use to motivate yourself. For example, when I finish physical therapy, I will reward myself by watching an episode of a show.
Remember: your journey is your own. Comparing yourself to others and their health is not productive, and will just end up making you feel worse. Everyone has a different response to pain, to symptoms, and to stress. Someone you know may have similar symptoms but may have a completely different way of dealing with it. Always remember that suffering is subjective. There is no way to compare because everyone’s health is completely unique.
It’s not fun or easy to deal with unpredictable symptoms. It’s hard, and can wear you down mentally and physically. But remember… you have survived 100% of your worst days. You’re doing great.

New Normal

If I could go back and tell myself one thing when I first got sick, it would be to find a new normal. And to try and accept the new normal.Sleeping all the time? That’s okay, that’s your new normal. Can’t walk without limping? That’s okay, it’s just a new normal. Using a wheelchair? New normal. Recently I was told to look into a new disorder, as a possible answer. I wasn’t phased at all, started doing research, and then it dawned on me…after almost 3 years of constantly being sick, this is my normal. And I’m okay with that. So if you’re just getting sick, or are struggling with something, find a new normal. Don’t forget the old one, but try not to expect your body to be capable of it. It’s impossible when everything changes, especially when that change is drastic- healthy, to sick, in a short time. I could have never imagined 3 years ago my normal would involve researching rare diseases, and administering meds through a feeding tube…but it does. My normal is not what I would have wished it to be, but it is one where I can live and thrive and be happy. “Normal” is after all, a very relative term.

And if your new “normal” feels not so normal at all, remember that you are not alone. And remember that things do get better.

After all, I’m certainly still here.

A letter to my disease

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Dear illness,

I never knew that you would come for me. We all know about illness, it is the elephant in the room. Yet somehow, we always assume it will happen to “someone else”. The trouble is, we are all “someone else” to the rest of the world. When I joined the ranks of those forced to shoulder you, I realized I couldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life, supposed to be healthy and free. No one who has not tasted this world for themselves imagines that someone who is this young should be sick. You aren’t fair. You aren’t right. But you are what happened.

And my life today is very different than that of my peers- but that’s okay. Because I have learned to savor the moments where I can breathe without pain. To walk when I can, and when I can’t, that’s okay too. You have taught me that sometimes crying is the only way to heal.

You took so much that I would give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more. And I hate you for that. But because of this, I am grateful for the little things. In a few years, those are the things I want to remember. How despite you, I found hope, and happiness, and joy. I have learned to find the silver linings, even when it never seemed to stop raining.

You’ve showed me how fast life changes, but you’ve also shown me how to live. That sometimes, you should take the hurt later if it means you get to walk on the beach. That when you are living seconds at a time because of how much it hurts, remember that you will make it out the other side. That live isn’t measured in years, and months, or even days, it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you, I know what it is to be brave.

 

Sincerely,

The girl who’s kicking your ass.

This was also published on The Mighty.