To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.

I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.

I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.

As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.

I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.

this is a life sentence for the innocent

Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?

Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.

It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?

I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.

There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.

More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/

Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂