Hi! I'm Savannah. I'm a mutant with maybe a few superpowers. Coping with chronic illness the best way I know how, and looking fabulous doing it. I write, I speak out, because if I don't, who will? If you have any comments, questions, or concerns, please feel free to talk to me at firstname.lastname@example.org.
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.
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.
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…
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.
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.
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.
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.
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.
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.
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.
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.)
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.
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.
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
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.
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?
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.
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).
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.
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.
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.
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.
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.
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.
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.
“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.
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.
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.
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.
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.
Finding my superpowers while fighting rare disease, and empowering others to do the same.