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:
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. 

Hospital How-To’s

Hospitals are nerve-wracking places. You end up away from home, being woken up at all hours of the night. Procedures, testing- none of it is fun and little of it is easy. I’ve spent several years cultivating a knowledge of how to survive and make hospital stays easier, and I am still learning things that make it more bearable.

Bring comfort items. Hospitals are cold, drafty, and unfamiliar. In my experience, having your own clothes and your own blanket or pillow can make a world of different. Often, you end up in a gown, and I generally try to change out of it as quickly as possible. Depending on IV lines or monitors, you may need a nurse’s help to briefly disconnect lines or tubes in order to change. And that brings me to my next point…

See my designer gown?

Be nice to the nurses. Without a doubt, they are the ones who are in charge of your fate. No, they’re not making all of the calls, but they are your allies. You probably won’t see your doctor for more than a few minutes a day, and your nurse is the one who will generally be administering meds, helping you with things, and passing information along to the mythical physicians. If you’re like me, and absolutely hate calling the nurses because you don’t want to bug them, remember that it is their job to help you. If your IV beeps, call your nurse. If you’re uncomfortable and know you can receive medication, call your nurse. Trust me- they’d much rather you call for help rather than falling, or reset the IV rather than having it beep nonstop.

Write out your questions, comments, concerns. You will see your doctors briefly. Generally they’re in and out, and it’s only after they leave you remember that pressing question. Write down what you want covered, and that way throughout the day you can add questions or comments, and won’t forget major points when your doctor arrives and leaves in under five minutes.
Ask questions and bring up concerns. If something doesn’t feel right, or you’re worried: ask questions. As much as I sometimes wish they were, medical professionals are NOT mind readers. They need you to let them know if your pain is out of control, or if the medication you just took is making you feel sick. Telling the doctor or nurse what you are experiencing allows them to make better and more accurate treatment decisions. And if your doctor isn’t listening, contact the patient advocate. Most hospitals have them, and they can help- but only if you talk to them and say what you need.

Taxi (my service dog) and I

Figure out coping mechanisms. The hospital is boring. There’s not much to do, and when I’m in the hospital I’m normally feeling pretty crappy. I’ve used different things over time, but music, audiobooks, netflix, or art are my go-to’s for managing pain, boredom, and everything in between. This falls in line with my next point.

Art- my savior in tough times.

Bring your electronics. (And your chargers). Phones, iPads, computers- they allow you to escape the land of sterile walls. FaceTime with friends, watch a youtube video, catch up on your favorite show.

Facetime is a brilliant invention.

People will wake you up. It is a fact of life, and there is little you can do. I once had a nurse and nursing student come in at 3 am, turn on all the lights, and then the nurse did a 30 minute lesson for the nursing student on how to draw blood from a central line. Loudly. If you have long term stays, it is definitely  worth it to talk to your doctors and figure out if meds and vital checks can be moved around slightly, so you can have as much uninterrupted sleep as possible. This isn’t always possible, and so in that case, using an eye mask and earplugs can make it quieter and less fluorescent.

Hospitals aren’t fun. They aren’t enjoyable- but sometimes they are necessary. And in those necessary cases, finding ways to make it more enjoyable are a big deal. (Okay, maybe enjoyable is a stretch…how about “not completely awful”?)

I wish you all the best of luck with admissions, appointments, and inpatient adventures.

Finding my Voice

The most courageous act is still to think for yourself: aloud. -Coco Chanel

Last Friday, I had my feeding tube replaced. This replacement has to be done under X-ray to ensure proper positioning. Tube replacements are quite routine, and I’ve had many over the years since getting my surgical tube.  Many patients have no trouble having them placed, and need no sedation or anything of the sort. I’m not one of those patients. The many painful experiences I’ve experienced in interventional radiology make it incredibly difficult to be calm and lay still during replacements. This means that for every replacement, we use some sort of anesthesia or sedation. 

Earlier in the week, the radiology nurse called to confirm the date and time, and let me know that the medications I had used in the past could not be used this time- they needed to be administered by an anesthesiologist, not a nurse. They hadn’t scheduled for an anesthesiologist to be there with my procedure, even though I had told them what sedation protocol I had tolerated well last time. This meant that the procedure would either be rescheduled or I would need to use different medications.

I was panicked and scared, but not just because of fear of pain during the change- I was guilty for being uncomfortable about needing any sort of sedation something that “everyone else” seems to handle just fine. I was frustrated that we had to reschedule for something I viewed as “my fault”. I felt angry at myself for not wanting to try the more minor meds again, and upset that the changes scared me so much. Why was I being such a wimp? Again “everyone else” entered my head- if they can do it, why can’t I? These thoughts come into play much more than I’d like to admit. I want to be as strong as the mythical “everyone else”, and able to cope as well them.

When I explained my worries to my mom, and told her how I felt that I should be able to handle it, she said something crucial. She reminded me that this was my body, and mine alone- and that I needed to advocate for the method I felt most confident with.  She told me that I would be the one who had to live with the results. These are all things I know, things I’ve said and believe; but in those moments I felt weak. Is “everyone else” braver or stronger than I am? 

In this age of social media, it’s easy to compare. We forget how much the posts and photos you see are filtered. It’s easy to put up a smile and a quote and make things seem easy and simple- hide what happens behind closed doors in the moments of fear and panic and pain. What you see from someone’s Instagram feed is what they want to show, and it is impossible to see real life from snapshots and short sentences. Everyone’s story is different. Someone can seem a carbon copy of a story, but each journey is unique in every sense of the word.  So please, put the thoughts of “everyone else” out of your mind. (I know, easier said than done.) It matters not what they do, how they do it, how they handle it- what matters is you. Your body, your choices, your expectations, your reality. Comparing ourselves to the split seconds captured on social media is fundamentally impossible.

My mom reminded me of something I had  momentarily forgotten in my panic- this is my body. If this is what works for me, and allows me to comfortable and calm, then that’s what I should fight for. In the past, it’s been easy for me to fold under pressure. I don’t want to make things difficult for others, so I may not come out and say that I’m not okay with this. I’ve tried many things that I have been uncomfortable with, and have paid the price. I’ve felt bad about not pushing through, when I see someone else online or in person doing so. In the past years, I’ve become much better at advocating for myself, but it’s still a work in progress- one that is absolutely essential. More than we’d like to admit, patients try to convince themselves that what is best is what is easy. Or at least- I do. I hate imposing, and pushing for things that others don’t seem to think necessary. I want to make my caregivers jobs simpler, and I want to be “trying hard”. It seems silly that after several years, I still have these feelings of guilt and anxiety- but if anything, they have taught me to ensure that I am speaking up for what I want and need. If rescheduling a procedure allows me to get the medications I need, then that is my decision. I called back, and confirmed that I wanted to do reschedule, and use the protocol that had worked so well before. The swap happened, and it went brilliantly. In fact, it went better than it has ever gone. 

At the end of the day, you are the only one who knows how you feel. Doctors, nurses, family, friends- none of them live in your skin. No matter their opinions, in person or online, no one knows how it is to exist in your mind and nerves and heart. This is your body, and it should be your choice as to how things are done. 


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.

And we keep living anyway… Health Update

When I was in advanced placement classes in the beginning of high school, it was simple to imagine the exam. You knew it was coming, had planned for it all year, but somewhere it got lost. It never felt like it would come. Time was elastic in those moments, fast and slow all at the same time. The recoil was striking- all of a sudden, it was done.

When dealing with life, most people want to think the best case scenario is the one most likely, because it probably is. As if the bad things won’t come if you don’t consider them. Even if you’re sick, sometimes it seems as if time will stretch forever, like the recoil will never come.

I haven’t written in months. No, scratch that. I have written, but it’s less an update on my health or a post about advocacy as it is regurgitating my thoughts into poorly crafted sentences and run on paragraphs. I haven’t done a true health update in a very long time, so here goes.

In July, I was admitted to the hospital following a spate of unmanageable anaphylaxis. I was admitted for three weeks while the doctors threw everything but the kitchen sink at my mast cells, but knowing them, they probably would have chucked it back. (If only I could draw- I’d make a mast cell comic.) I had my feeding tube replaced, back to a button, which is much smaller and more comfortable. Eventually, I was stable enough to be released, and was in mid August. I came home with a truckload of new supplies, which was fine by me, because they helped control things out of the hospital.

Taxi made my room quite popular among the staff.

I stayed reasonably okay through September. I started school carting around a few new tubes, and I must say, I’m probably the only student who was quite literally shooting up during class. My mom laughed at that, and so did I. I turned 18 in September as well, and my best friends surprised me with a party.

My 18th (surprise) birthday party. Left to right: Shira, Ellie, Leah (and her service dog Marcus), Me (and my service dog Taxi.)

In October, one mess had led to another, and a few steps down that line landed me sans the pain meds I’ve been on for quite a while. Let me just say: I do not recommend withdrawl. It’s pretty lame. I ended up in the hospital, which led to my meds being screwed with, with led to major anaphylaxis and a Code Blue. Again: do not recommend. However, I can now confirm it looks a lot like in the movies. I managed to avoid intubation (which is a streak I’d rather like to continue), and I spent a bit in the ICU. The various medical professionals in the rapid response team that answered the code were amazing, and so was everyone in the ICU. (Plus, the ICU nurses were very good at making intimidating signs to tell people wearing scent to stay out of my room.)

In the ICU.

Since being released, I’ve been okay. I’ve continued with IVIG, started a round of iron infusions, changed up my anxiety meds, I should be getting my new wheelchair soon. Things move up and down, of course, but in general I’m pseudo stable. And the world continues, as it should.
Sometimes I feel like I’m frozen in a sea of fast moving friends. There is work and more intense schooling, sports, and all the other inconsequential things that are everyone’s normal: just not mine. A constant merry go round. When riding, the whole world is moving with you, but when you’re watching from behind the railing, all you see is the movement and the occasional hand wave.
I don’t want to overemphasize the band, because there’s been a lot of good things to0, many of them things that didn’t seem possible in July or October. I’m home for the holidays, which is great. I’ve been able to finish college applications, continue with school, and hopefully soon take (and pass) my road test for my driver’s license.  I’m planning for college acceptances/rejections to arrive next spring. This is both wildly exciting, and anxiety inducing. What if I’m not doing well enough for school? What if medical costs uproot the stability we have now? What if the next steps don’t work? What if, what if, what if.

“Life doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes…and we keep living anyway.” Hamilton lyrics so accurately describe my life. It’s a dream of mine to see it, and to meet Lin-Manuel Miranda.




There is no limit on uncertainty. You could walk out the door tomorrow, and be hit by a bus. (This is the analogy my mom always uses.) You could win the lottery. Get a promotion. Be diagnosed with a rare disease. The point is, we walk through life not knowing what the next day or moment will bring, we live in waiting for the unknown. So, in this moment of infinite possibilities, find the joy, the hope, the love. These emotions will carry us through this uncertain marshland- through the painful and impossible moments. As I’m fond of saying: we humans adapt.

The true purpose of service dogs.

No one is guaranteed tomorrow. It’s such a cliche, but if this last year has taught me anything, it’s that this moment, right here, right now- this is your life. The future is there, yes, but this present is what you have. Despite the tough moments, despite the difficult days- the world rolls on. We keep living.

2016 has been a roller coaster. I am so grateful to have faced this year with those I love by my side. And I know that whatever 2017 brings, we will meet it as it comes- with grace, with dignity, with love. Happy Holidays.

“She was beginning to realize people could survive most things. Not because they were brave or strong, but because there wasn’t any choice.” ~ Candice Proct


At a music festival where I saw Fall Out Boy, my favorite band.

Rare Disease Advocacy

Over the course of my journey with rare and complex diseases, there have been many moments of hopelessness. When you’re at the end of the road, when you’ve outlasted all the options- what do you do next? Where do you go on this shaky ground of fear and desperation? How do you take a step when all you’re waiting for is the other shoe to drop?

Because there isn’t any other option. There isn’t anything else. I’ve been asked a million times: how do you do it? You do it because you don’t have a choice. I wish to hell that on the impossible days I could just say “hey! It’s too much! I can’t handle it!”- but that’s not how it works. You go forward because it’s all you can do.

As one of my favorite quotes goes: “Some things don’t require courage. They just need to be done.”

And once you’ve moved on from the quagmire of non-options, you figure out what you can do. You adapt. You glory in the tiny victories, and in the inconsequential pieces of our lives that most take for granted. Your “normal” changes, and you learn to live despite that. Or perhaps because of it.

I attended the Global Genes Rare Patient Adovacy Summit. My first year attending the full conference. I was honored to speak on a panel on young adult advocacy, and something that I feel very strongly about. I also got to listen  to sessions run by amazing activists and awesome people, who educate and advocate and want to empower others to do the same.

I was astounded by the courage and resiliency found in the people who fight tirelessly for medications and legislation and quality of life, despite the fact that for many, modern medicine will not move fast enough. The changes they put into effect probably won’t benefit them, trials and medications they were crucial to the success of may not be their miracle. They are not necessarily fighting for themselves or their family members- they are fighting for the next family. The next teenager diagnosed with an incurable disease. The next parent who has to hear that there is nothing that can be done for their child.

So for those who are healthy, untouched by rare disease: start advocating. Push for cures, even if it’s not your child or you or a family member, even if you know no one who fights an incurable diagnosis. 1 in 10 have a rare disease. And so if you don’t know someone, odds are you will soon. And if that’s not reason enough: medical science has come a long way. As humans, we reach into the bridge of the unknown- but the technology is often moving faster than the people behind it. Yes, science is racing along at breakneck speed but that doesn’t change the fact that for most, the cure isn’t there. Because science doesn’t move fast enough.

That’s not to say it doesn’t help and fix and cure: I would be dead if it weren’t for modern medicine and technology. And so would many of my friends, and a good number of people at this conference.

And yet. For most, there is no treatment. There is no miracle drug. We do not have a way to solve their disease. We do not have a way to solve my disease. So advocates fight for symptom management, for accessibility, for quality of life. For adaptations that can make life better and more livable. And yes, we do fight for cures. But medicine moves slowly. Drug trials take time. And honestly, time is of the essence.

What do you think of when you think of rare disease?

I think of closed doors. Of dreams shouldered, sometimes forever- because things have moved on from living and into surviving.

1 in 10. If it hasn’t affected you yet, chances are it will.

And when that 1 in 10 finally affects you?
There are more than 7,000 rare diseases and disorders. And 95% of them have no treatment. Do you want to take those odds?

Members of We Are More: some of us were meeting in person for the first time. Everyone in this picture has a rare disease. (Except for Taxi)

Moving forward when the destination is unknown. 

“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.”

Hey there! Long time no see.

Since I last blogged a lot has happened. Let’s start with the good. I received my service dog Taxi, and he has been such a gift. I have another post planned about him, but I could talk about this dog for days. (As my friends and family well know, as they’ve had to hear it.) I’m also very excited for some new projects with the organization I am a part of, We Are More (we have a Facebook and you should totally go check it out). I was also able to attend Comic Con a few weeks ago, and I had an amazing time geeking out and seeing so many amazing artists and cosplayers.

My friends and I at Comic Con

And now on to the not so good: my medical situation is unstable at present. I’m having lots of anaphylaxis that is not controlled or well managed. My doctors are doing their best, but everything takes time, nothing happens instantaneously like I might wish it did. New meds and new treatments are always an ongoing process. In the past few weeks, I’ve received my first xolair injection, and my second dose of intravenous immunoglobulin. I’m hoping that these new treatments show efficacy sooner rather than later. The IVIG is definitely helping with some of my symptoms, so that makes me optimistic. My stomach is actually doing quite well, so once these reactions begin to be a little more controlled life will be easier.

IVIG round two!

I’ve written a lot over the past couple days, but have been struggling to word what I’d like to say. The posts have been mostly about finding a way to carry on when the destination is so very unknown. Uncertainty is the foundation of all our lives- and some of us are just a little more aware of that than others. It’s an uncomfortable thought, and one that those with chronic illnesses are forced to embrace.

I don’t know what tomorrow brings. It may be a good day, or it may be one that involves countless medical interventions just to keep breathing.

I’ve had a lot of fear in the recent days and weeks. I’m scared of what’s happening to my body. I’m scared of the bad days. I’ve had a lot of trouble continuing to move forward when it seems like there are roadblocks at every turn. You would think after so much time spent with my body that it would get easier when it fails…news flash. It doesn’t. Or at least not much.

It’s easy in these circumstances to view your body as the enemy, the very thing you are fighting. I’m trying to change my perspective to see it as an ally- a friend for whom I need to provide support and love and care. So for anyone who feels like your body is betraying you- be gentle with it. It’s trying its best.

There’s a favorite song of mine that goes “Let it roll right off your shoulders…don’t you know the hardest part is over?” And I listen to it and wonder if it is.

People talk about bravery and strength, but I don’t feel particularly brave or strong. I feel tired and frustrated. I’m trying to remind myself that strength doesn’t always mean being positive or making it sound better than it is- because sometimes life is hard, and strength is just carrying on.

Got out of the house to go to the bookstore.

And so that’s where I am right now. I am uncertain and tired, but I know that if this is my life, and these are the cards I have been dealt, than I WILL live this life to the best of my ability. I will make the best of my good moments. And embracing the bad moments is a work in progress, but I’m getting there. I’m getting there. Things like crafts, friends, my amazing parents, and my big dork of a dog make it easier.

Taxi and I : suddenly my bed seems very small!

So if you have the gift of free breathing, of eating what you please and and doing what you wish, please don’t take it for granted. The little things are truly the most important. Those minor details of life most of us gloss over…those are the things that matter. Sometimes even more than the big things.

This is a bit of a stream of consciousness post. I have some other things written out and planned, so look out for those in the coming days/weeks.

As always, thank you for the support and love. Thank you for reading my words.

Doctors, frustration, and ports, oh my. 

I had my immunology appointment on Tuesday. The doctor and his resident were both very nice and clearly want to make sure that they are covering all their bases. He seemed cautious and a teeny bit skeptical. I’m a little frustrated with that because he has access to the records where the doctors wrote that my parents and I are crazy, and that I was making my symptoms up. I haven’t seen those doctors in almost two years, and we have thouroughly disproved that notion with data, but he doesn’t know that. He suggested starting a few new medications in hopes of getting better control of the reactions, as well as some testing that we can do in order to move forward. I really wish that doctors who incorrectly treated me and caused a lot of problems were not still effecting my treatment, even in small ways.
I had blood drawn at the clinic, and it took three phlebotomists and five sticks (plus a lot of fishing around) before we had enough blood in order to fill the few tubes that the doctor wanted. Oh, how I miss my central line. My dad called the vascular surgery center this morning, and I will be having my port placed next Wednesday, rather than at the end of June. It was delayed because of the reactions, but it’s really kind of ridiculous to continue without a line when I’m needing access so often. I really trust the people who are going to be putting it in, and I’m confident that they will deal with any issues that arise during the procedure.
I had a reaction today, and was very close to needing my epipen, but luckily the medication finally hit and it started to calm down (thank goodness!).
I see several of my doctors in the next couple weeks, and I also will be traveling to Oregon for something I’m really looking forward to: I’m getting a service dog! I’m so excited to move forward with a new chapter of independence.

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 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.

Anaphylaxis Awareness Day!!

Today is anaphylaxis awareness day. 
I am celebrating by being in urgent care following anaphylaxis. As you can see, I always pull out all the stops for my parties.

If you are friends of mine, you should know that I carry an epipen. Most people who have an anaphylaxis or who have serious allergies carry one. It is designed to be easy to inject in case of a bad reaction. 

You should learn how to use an epipen, even if you know no one who has serious reactions- if someone has a reaction in front of you…do you want to watch them die just because you didn’t know how to administer it? 
So here’s how it goes. 

1. Pull off the blue cap(s). Some brands have two, and some brands only have one. 

2. Aim for the meaty part of the thigh. 

3. Stab. Like you mean it 

4. Hold it for ten seconds- count out loud if possible, that way the person may also hear it. 

5. Remove the pen. Some epipens do not have a retractable needle- be careful not to puncture yourself. 

6. Dial 911. (This is an important one, as epi only is a stop gap.)

7. Stay with the person until the ambulance arrives.

8. Congratulate yourself on a job well done. It’s scary, and you should be proud of yourself. 
Anaphylaxis is quite dangerous, and needs to be treated appropriately. But remember: epi pens are designed to be easy to use. You can do it! Additionally, most epipens have instructions and diagrams on the side to help you use them properly. When it doubt, epi it out!

For my fellow anaphylaxis friends: this is not easy. And it’s in no way fun. But you are not alone, and we will make it through.