I have decided to retire my backpack that has so faithfully served me the last five years on Wednesday, August 2nd after my last summer class final. It held up really well, but the bottom is starting to thin out so holding 40 pounds of books in there is a big demand.
This backpack has been there for my first college class, my first A in a college class, and many other academic milestones. It's been in the back of an ambulance more than once. 😂It's been covered in sweat, tears, and blood. No seriously, I've bled on this bag in the hospital! It's seen the dangers of the 10A shuttle and more than once, I've taken it to taekwondo. This bag was practically attached to me 24/7 during the semester.
It's traveled to Orlando, FL, the Outer Banks, Siesta Key, FL, Rochester, Minnesota to Mayo, Cleveland, OH, Rowan Medical Center in New Jersey, Baltimore, MD, Charlotte, NC, and Philadelphia. There's probably more that I am completely forgetting. But you get the point. It's been everywhere!
It's been thrown around in hospital rooms at University Hospitals in Cleveland, Rowan Medical Center, UPMC Passavant, St. Margaret, Children's Hospital, Presby, Montefiore, Shadyside, and a bunch more.
It's been chucked off my lap because my wheelchair tipped over. It has gotten a good share of beatings.
This might seem really weird to some people, but that backpack has been a symbol for me to carry on with my academics even I was beat up like the bag. Most won't understand and that's ok.
Old Backpack above and New Backpack Below
The other day, a classmate and I were sitting and talking. We were both about 15 minutes early for lecture, so we sat and chatted. At first it was all small talk, the usual "What's you major?", "What do you think of the class?", and "Do you like the professor?". We had a great conversation going when I turned to start unpacking the materials for class from my backpack. "Why are you in the wheelchair?", she quickly inquired. That's a question I've answered no less than a dozen times in the last three days alone, and yet, I stuttered. "My feet are turned in. I can't move them," I finally replied. "Do they hurt?" "Yeah, it hurts all the time, but I'm pretty used to it," I said. "All the time?" "Yep, 24/7." Here's where she blew me away. "I would rather die than live with that!" I didn't have a good response for that at the time, but I do now.
So to the girl in my class who would rather die than live with my chronic illnesses, I am not going to tell you that life with chronic illness doesn't suck sometimes because it does. Yes, I spend a lot of time in the hospital. I take a bunch of medication. I get poked with needles a lot and I have had plenty of uncomfortable tests, procedures, and surgeries. None of it was fun, but it was all necessary.
What you don't know is that when you live with chronic illnesses, you are forced to try to compartmentalize health from the rest of life. It's a challenge and not completely feasible, but it helps some. This means that my health can stink, but life itself can still be pretty great. For example, I can be having a huge dysautonomia flare, but I can be doing really well with my classes and taekwondo. In that case, my health isn't great, but that doesn't mean that my whole life is bad.
And one last thing, if you'd been in several life-threatening situations that you weren't expected to survive at a young age, you learn what really matters. When you go to the brink of death and come back from it multiple times, you realize how truly precious and fragile life is. So then the little stuff doesn't seem so bad anymore.
The health journey of a chronic illness patient is full of high points and valleys. I think it's similar to what one might find on a EKG. There are so many challenges on the path that medical teams, patients, and their families must overcome. But as long as there's those high points and low points on our EKG, you're alive and you have a life to live.
Now, not all illnesses are easy to get a diagnosis for and more likely than not, at some point in your journey, your healthcare will become fragmented due to poor communication between doctors on your team and you. There will be times when you go try and find answers only to find yourself staring into a pitch black outer space with no idea where to go next. Yet, you know you have wake up every morning and face each day knowing that you are going to have to tackle your conditions head-on and do what you need to to take care of your body.
You'll play the hurry up and wait game, waiting days, weeks, and months for test results to come back, waiting for insurance to approve a new treatment or test, waiting for your medications to work, or waiting for an appointment with that specialist that is booked out for three years. Sometimes, it feels like you are watching the hand on the clock go round and round over and over again.
Add in the fact that we only have a limited supply of energy per day and that means we are forced to play a sick game of "Would You Rather?". Now this "game" is going to look different for different people, but some of my daily decisions include: Would you rather eat or take a shower? Do homework or sort your pills for the week? Put on make up or pull up hair? Have three doctor's appointments in one day and have two days to recover or have one doctor's appointment per day and no time to recover? Take breakthrough medication and make stomach problems worse or deal with and not further anger my stomach? The possibilities are endless.
The chronic illness patient is forced to make critical decisions each day, but not feeling well makes logic and reasoning harder. Add in all the emotions bottled up inside and decision-making is challenging. It's really easy for others to forget how much we have on our plate, just with our health when we go through life acting like nothing is wrong. In addition, we can't forget the misdiagnoses of a psychological condition or labels of "attention seeking" when in fact, there are legitimate medical conditions to explain the symptoms.
The road to diagnosis is a long trek on a steep rocky path. We fight for an accurate diagnosis, which we hope will bring a treatment or even a cure. Unfortunately, sometimes just getting the diagnosis is a challenge, but you might as well not even know what's wrong with you because you can't get treated effectively.
These are just some of the harsh realities of pursuing a diagnosis and trying to hold it all together. It's tedious, but that is just a part of the roller coaster we know as life.
Hearing aids and cochlear implants can be a challenge for some children and adults to accept, especially if they haven't been deaf their whole lives. For some, they may remember life before which can make the life after hearing loss harder. In my case, I was born deaf, but I wasn't diagnosed until I was four years old. I got my first pair of purple hearing aids two weeks later and I also picked out sparkly rainbow glitter ear molds to go long with them. Needless to say, I was not afraid of letting the rest of the world see my hearing aids. Because I don't remember life without hearing aids, it has always been natural to me.
I would always have bold colored hearing aids and bright, multi-colored ear molds. I would put stickers on them to switch it up every once in a while for special occasions, holidays, and more. Because I wasn't a fan of having pierced ears, my hearing aids became my "hearlings" (a made up combination of hearing and earrings). I wore hearing aids until I was 13, when I received my bilateral cochlear implants.
Now, being a teenager, I needed to make these implants look as awesome as possible. I stepped up my decorating game. I found that by decorating my implants I had more confidence and I realized that because my designs were so unique, I was proud of them. This helped me beat that teenage "I hate being deaf and different" stage, that many deaf teens go through at some point in their lives.
My biggest piece of advice to newly diagnosed people using hearing aids and/or cochlear implants is to do what you need to to be comfortable with your devices. If people are thinking about how awesome your design looks, they may hardly even notice that it isn't a Bluetooth headset! Decorations on hearing aids and cochlear implants make great conversation starters. They also encourage people to ask questions and educate themselves. Some companies offer sticker sheets with the devices and cochlear implant covers can be ordered from the manufacturer or SkinIt.com. However, some awesome designs can be handmade as well to be extra unique!
Hearing aids and cochlear implants may be medical devices, but that doesn't mean you can't have a little fun accessorizing them!
1. My wheelchair is a part of me. It acts as my legs and as an extension of my body. "Moving me out of the way" is rude. Would you pick some stranger up and move them out of your way in the middle of a grocery store? That's basically what you are doing if you move me out of your way. There are exceptions to this rule (like at taekwondo), but they are few.
2. Please do not step over me or my wheelchair. It is incredibly uncomfortable for me and I don't want you falling on me.
3. When someone else is with me, ask questions about me to me, not to the other person. I can hear and respond to you. Also, bending down to talk to me, just please don't do it!
4. Please don't step in front of me, walk behind, or suddenly stop in front of me. If I am trying to go up a hill or other grade, I need to carry speed to get me where I need to go. Stopping a wheelchair suddenly is challenging and it wears the tires out faster. I can't always see directly behind me, so please don't stand too close behind me.
5. If I look like I'm struggling and you want to help, please ask. Even if I don't need help, I appreciate the offer.
As little kids, many of us were both scared and fascinated by the classic film "The Wizard of Oz". One of the beloved characters from the film is the Tin Man. When we are first introduced to the Tin Man, he isn't able to move around well. When Dorothy squirts oil on to his joints, he is able to move a little bit better. Over time and after some movement, the Tin Man stiffens up again and he needs more oil to continue moving.
For approximately 1 in one million people, the inability to move around freely is the harsh reality. Those living with Stiff Person Syndrome (SPS), nicknamed the "Tin Man Syndrome", live with severe and often relentless muscle spasms, rigidity, and contracture. This constant muscle overactivity makes simple movement very demanding. Because the muscles of a person with SPS are constantly firing, we are constantly fatigued and it can be challenging to sleep due to pain. This fuels the vicious cycle. Many people compare the muscle spasms to doing strenuous exercise non-stop. It is also important to remember that these are not your average muscle spasms. These spasms are capable of tearing muscle, rupturing tendons, tearing ligaments, dislocating joints, and breaking bones.
If I'm lucky enough to get some sleep, my day always starts off with a series of muscle spasms when my alarm clock goes off. Some people with SPS have what is known as a exaggerated startle reflex. When we startle, usually from sound, touch, or emotional stress, it can trigger a series of painful muscle spasms. Common things like the honking of a car horn, the slamming of a door, and even a hug from a loved one can trigger these painful spasms.
Once my spasms subside enough, I carefully make my way through my day. On a good day, I can walk using the wall and furniture for support. I have a wider than normal gait and I look like I'm a penguin waddling around. Most days, I rely on my wheelchair to move about safely, as my feet are in a fixed contracture. Like many patients with SPS, my balance has been compromised and I fall a lot. These falls can be problematic, as constant muscle contraction prevents me from being able to "break my fall" or protect myself. Simply put, my muscles don't react fast enough. Large, open spaces are troublesome because there are no objects that can be used for balance and support.
Nothing is easy with SPS. Every minute of every day feels like I'm swimming through a never ending sea of wet cement. Things like chewing and swallowing food can be hard. The muscles that control breathing can spasm causing serious respiratory compromise and bladder and bowel functions can be affected. Seizures are another scary and unpredictable part of this syndrome. Some people with SPS have curvature of their spines known as kyphosis and hyperlordosis. Kyphosis affects the upper spine causing a hunched back and hyperlordosis affects the lumbar spine and causes the back to arch back more. I don't have either of these, but my back muscles are so tight on one side, it has caused minor scoliosis. It's not as bad as it could be, but it is still uncomfortable and could get worse.
Because it is considered a rare disease, getting a diagnosis is a nightmare for many patients with some studies suggesting that the average patient goes undiagnosed or misdiagnosed for seven years. Misdiagnoses of anxiety, phobia, conversion disorder, dystonia, multiple sclerosis, fibromyalgia, Parkinson's Disease, and psychosomatic illness are common. Treatment generally consists some combination of muscle relaxers, pain management, and immunosuppression, as SPS is a neuroautoimmune disease. There is currently no cure.
The human body was made to be in motion, but like the Tin Man from "The Wizard of Oz", the more we exert ourselves, the more our muscles rebel (in general). Even though the Tin Man is a fictional character, there are many real life "Tin Men" fighting for a better quality of life.
I wanted to take a moment to write some information about a medical device that is near and dear to my heart (literally!). In March 2016, my doctors elected to place a port in my right chest and I've had it ever since. As a result, I receive criticism for it on a regular basis because I'm "not a cancer patient, so I couldn't possibly need it". I'll address that, but first, what is a port?
The kind of port that I have is a Bard PowerPort. A port is a type of central line surgically placed in the chest. There are two main components: the port body and the lumen. The port body is the part where a special needle called a huber needle (non-coring) goes into the silicone center. The port body is primarily made from titanium. The other part, called the lumen, is basically a small tube placed in the superior vena cava, a large vein in the upper chest. The lumen runs all the way to the heart, which allows the medication to flow directly to the heart. There are pictures and diagrams below from the manufacturer's website.
There are several kinds of ports, but mine is capable of handling the force of power injectors, which is the biggest difference between a plain old port and a PowerPort. Also, my port has three bumps on the edges, which is the identifier for the port type in this case. You can feel the port through my skin and sometimes you can see the outline of it through my skin. No, it doesn't hurt me at all. I don't even notice it's there usually, as it is super lightweight. When it is not accessed (have a needle in it), I can take a shower and swim with no problems. When I have the needle in my chest, I have to keep the dressing dry to maintain the sterile field. That's when I use a special plastic cover called AnchorDry for showers. It is kind of like Glad Press and Seal on steroids with a bit of adhesive around the edges. I have no activity restrictions when I am deaccessed and I just have to be careful not to bump it when I am accessed.
My surgery was a walk in the park. I was already admitted to the hospital so the general surgeons came in and helped us make a plan. Three hours later, I was in surgery and I was accessed for the first time while I was under. My shoulder was sore for a few days, but it didn't hurt much at all.
For the most part, accessing my port is not painful. Every once in a while it hurts more than normal, but that's normal. It is so nice to only need to be stuck for IV access once instead of 12 times a day! No, that's not an exaggeration! One of the main reasons that I have it is because my venous access has become so poor and unreliable. In an emergency it is not practical to stick me dozens of times to get an IV. In addition, I need access a lot for infusions, blood draws, and other medications. Therefore, this is the best option for me. I've had various other central lines in the past, but they were all really high maintenance compared to my port. Every 28 to 32 days that my port is not accessed, I have to go to the infusion center to get it flushed with heparin, which is a blood thinner that prevents clots in the line. Clots and infections are two of the biggest risk with any central line, so it is important to take care of them.
When a port is accessed, it is a strictly sterile procedure. Gloves, needles, dressings, sponges, gauze... Everything is sterile. The person accessing the port even has to wear a mask. Sometimes I wear a mask too, but usually I just look away and take care not to breathe on the sterile area.
As I mentioned earlier, I get a lot of criticism for having it because it is so commonly associated with cancer patients. Well, it's not just for cancer patients. People with autoimmune diseases such as mine, unreliable frequent venous access, or patients that are receiving medications that are too caustic for a peripheral IV are all candidates for a central line such as a port. It is a personal decision for each patient, and it has to be determined that the benefits outweigh the risks, but for me personally, I do not regret my decision at all. It's been a great addition to the tools needed to help keep me as healthy as possible.
Anyone with chronic illnesses knows that their conditions are unpredictable and of course, you can't just have one chronic condition. When living the life of a chronically ill individual, it is very easy to get wrapped up in your conditions simply because they may affect you every minute of everyday. Symptoms come and go, medicines work and then stop working, treatment fails, doctor's appointments, surgeries, the isolation of not being able to go out into the community... The list goes on.
In order to deal with my chronic conditions all at once, I am forced to set some chronic conditions on "cruise control". I don't have time or energy everyday to devote to trying to remedy every symptom. In my head (and sometimes on paper), I'll arrange my conditions in a "red light, yellow light, green light" fashion.
"Red light conditions" are generally current or imminent problems. It can also refer to conditions that are completely out of control and that I have no current treatment for at this time. Conditions that are immediate life-threats are always red. I usually have a plan to see a doctor about such problems as soon as possible, as they bother me 24/7. These conditions are never truly on the "cruise control" I've described. Treatment changes frequently, fails quickly, and are usually not sustainable financially for an extended period of time.
The majority of my conditions will be "yellow light" conditions. They cause symptoms the majority of the time, may or may not be well controlled, and generally do not completely debilitate me. Don't get me wrong, they can make me miserable, but usually they are bearable. "Yellow light" conditions usually have treatments, maintenance, and preventative measures. These conditions may be on a "cruise control" but I am still forced to address the condition daily.
"Green light conditions" are conditions that are not bothering me at all (which is rare), and/or conditions that are under control as much as they possibly can be. These are the conditions on "cruise control". I just keeping doing what I need to to maintain and prevent them from becoming problems. Generally, these conditions do not bother me 24/7 and maintenance treatment may or may not be necessary depending on the condition.
Due to the unpredictable nature of chronic illnesses, a "green light" can become a "red light" and every combo in between in seconds. I've found that by looking at my conditions in this light, I acknowledge that they frequently change, vary in severity, and require consistent management to keep my body functioning as optimally as possible. This "cruise control" does not neglect the conditions, as maintenance treatment is still necessary, but it helps reduce the amount of illness related stuff I have to think about daily. While this won't work for everyone or every condition, it is a relatively simple way to refocus your attention away from illness 100% of the time and on the small joys of life. Using the "chronic illness cruise control", I am better able to enjoy and optimize my days.
As I write this, I have been in the hospital for a week due to bizarre new symptoms. Prior to coming into the hospital, I struggled for about 2 weeks. Nevertheless, I still managed to push through my day, go to summer college classes, go to work, work out, enjoy time with friends, and more. This is a struggle that many people with chronic illnesses can relate to well. Despite symptoms, we often feel compelled to move on with our lives as normal, until we are stopped dead in our tracks.
That is exactly what happened this week. I went to my college class for a little more than an hour before deciding that my symptoms were too severe to continue with my day. A trip to my primary care doctor who sent me to the emergency room, followed. Within two hours, I was told I would not be going home that night.
This week, I had several doctor's appointments, college classes, work, and plans with friends and family. Guess what? None of it happened. None. I've laid in bed receiving fluids and medications through my port this week desperately hiding my eyes from any light. Even eating has proved to be a challenge, as I haven't kept anything down in over a week.
For a busy, high-achieving person, weeks like this are frustrating. I had my plans laid out and nothing went according to the plan. I am trying to have peace in knowing that while I've absolutely nothing productive done nothing this week, it was what my body needed and that is completely ok.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!