To the doctor that believed I could conquer the world,
When you met me, I was a 16-year-old that thought they had a pretty high pain tolerance. Boy, was I wrong! The pain I have endured over the last four years, my 16-year-old self would have passed out cold from the pain. You developed a plan to control my pain and it worked really, really well! It still works, but now that the hospital administration has discontinued the treatment program and you are unfortunately no longer my doctor, I'm forced to adapt.
Thank you for giving me the four amazing years to fight CRPS and win. I wouldn't be alive today without you and I definitely wouldn't have had the successes I've had if it weren't for your innovative thinking.
Thank you to you and your nurses for battling the insurance companies to allow me to get the treatments I needed. Without those treatments, my quality of life would have gone out the window a long time ago, and I don't know where I'd even be today. I definitely wouldn't be a successful college student though.
Thank you for constantly reassuring me that everything is going to be ok, even when I was absolutely certain that it wasn't going to be. I'm glad that I was able to tell you what I was thinking completely unfiltered if need be.
Thank you for making me laugh until I cried on the days I'm in the most pain. You've taken me to the operating room many times (I lost count after 50), and you made me completely at ease. I didn't have to fear going under anesthesia, because I knew that you would take care of me and I've come to trust you with my life.
Every individual with a chronic illness needs at least one doctor like you who is willing to step up and do what's best for their patient, even if it's not the most popular decision.
I'm being forced to turn the page on my chronic illness journey. You absolutely believed I could conquer the world if I had adequate pain control. You bragged about all of my accomplishments to other doctors like I was your daughter and I couldn't have done any of it without you.
I'm heartbroken and quite honestly, very scared to venture out into the world of adult pain management. I thought I'd have you as my doctor for another 6 years. I was supposed to have you as my doctor for another 6 years. I thought I had time. I didn't.
Although we've had to part ways very suddenly due to hospital administration interference, I'm thankful to be able to call you the first pain management doctor that actually helped me. Everyone thought we were making progress over the years and that the treatments wouldn't be threatened by the hospital, but we were wrong. Some feel like we failed. In my eyes, and in the eyes of every single patient you've helped, we didn't fail. You bought us more time to be as close to typical kids as humanly possible. You bought me four more years to have a good quality of life and for that, I will always be grateful.
One of your very first patients
Everyone wants to look their very best at all times, right? For those with chronic illnesses, simply getting out of bed can be a monumental task, let alone looking "good". Chronic illnesses take a huge toll on sufferers' bodies physically, mentally, and emotionally. Over the years, I've experienced a few things that absolutely drive me crazy about my body. I've learned that there's not much I can do, so I might as well at least try not to be overly concerned about my appearance.
A common problem many chronic illness warriors have is excessive weight loss or weight gain. Medications like steroids are notorious for causing significant weight gain. When combined with the reduced ability to engage in physical activity, it is very for the weight to climb up. On the other hand, frequent gastrointestinal issues from any number of causes, can cause dramatic, excessive, and completely inadvertent weight loss. Sometimes, it gets so critical, that a feeding tube is necessary to attempt to prevent malnutrition. I've been on both sides of the spectrum within the last year alone and it drives me crazy when people talk about my weight regardless of whether it's good or not. Either way, I'm not going to weigh the same thing in three months.
I've never been one to obsess about my appearance, but I recently started losing my hair a lot! Fistfuls after fistfuls of hair leave my head every time I brush my hair, wash my hair... Do anything to my hair basically! Of course it's normal for some hair to break or fall out, but this much. I have always had baby fine hair and it's usually not a problem, except when the remaining hair is really thin. I recently made the difficult decision to have my long hair cut short in hopes that it would stop falling out so much. Well, it helped a little, but it still comes out in bunches. Hopefully, my special shampoo and the biotin I've been taking will help soon. This is a very common problem as a result of the medical conditions themselves, malnutrition, vitamin deficiencies, and medications to name a few.
Everyone seems to be afraid of scars. But why? They are like little pictures that tell a story and no two scars are alike. Scars from IVs line my hands, wrists, and arms, but they are a symbols of all the ketamine infusions, blood tests, contrast for CT scans, and plain old IVs for hydration and medication administration in the ER. My back is littered with scars from hundreds of trigger point injections, countless epidurals, and a bunch of surgical scars. My fingers and hands have multiple scars, 2 from surgeries and 1 from accidentally slicing my finger open on the Operation game when I was 4 (Ironic, right?). I have a surgical scar on my chest from my port placement. Even though no one can really see them, I have one scar behind each of my ears from my cochlear implant surgeries and so many more. This same kind of story is very common among chronic illness warriors. I'm proud of my scars because they tell and I hope you are too. Sometimes the scars you can't see are the very ones that change us the most.
One of the least visible effects of many chronic illnesses is the mental illnesses that develop as a direct result of being sick. It is super important to remember this. Depression and anxiety often arise from the strain and loneliness of chronic illness. PTSD may result from bad experiences with physicians, near-death experiences, and poor hospital stays. Eating disorders may result because of a need for control over a body where control is hard to come by. This is by no means a comprehensive list, but these are a few of the most common mental illnesses, resulting from dealing with chronic illness.
There are some very intelligent people with chronic illnesses that when dealing with "brain fog", are incapable of doing certain things like carrying out a conversation or doing a simple math calculation. This symptom can be very annoying and is not necessarily treatable. It is unfortunate that it can make some of the smartest of people seem uneducated. Don't ask me to read out loud when my "brain fog" is bad, because it is not pretty and I look like a fool.
The more obvious physical, emotional, and mental changes in individuals that are chronically ill are often very hard to deal with. That is why it is so imperative to be careful about the way that compliments are given and refrain from commenting on weight, as some well-intentioned compliments can actually be quite offensive. As long as you love people with chronic illnesses for who they are inside, you will be on the right path!
September is U.S. Pain Awareness Month! Chronic pain is a major and quite debilitating problem in our society today. Chronic pain, in general, is defined as pain lasting longer than 3 months. While both pharmacological and non-pharmacological approaches can be taken to treat pain, there is still a huge stigma attached to it. That is what needs to change. No what's to be in nor do they want to endure the miserable treatments aimed at easing pain. More often than not, painkillers don't do anything for chronic pain or at best, merely mask the true issue. It's a big problem, but no one ever thinks about it until it happens to them. No one is safe from it. It affects all ages and all walks of life. The numbers are growing by the day, so more awareness is needed!
I actually wrote this after an individual from one of the dysautonomia Facebook groups contacted me regarding how to deal with EMS personnel, so here it goes.
Being an EMT and ski patroller the last three years, I have seen a fair amount of illness and injury. Of those that I've treated, some have had cancer, arthritis, diabetes, and some more unknown conditions like dysautonomia and CRPS. On top of that, I have my own set of medical conditions. That being said, I have been on both sides of the situation: a patient and a provider. I have had some really good providers and I've had some that were really awful.
Problems with EMS generally arise due to a lack of understanding on the part of the medical provider, but there are things that individuals with chronic illnesses can do to prevent such issues from occurring.