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.
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.
Like many people with chronic illnesses, I struggle with "brain fog," which complicates my academics. It has been a lot of trial and error over the last five years, but I have managed to find all the strategies that ensure my academic success in both high school and college. Here are some of most effective study strategies:
1. Flashcards- Not only is making flashcards an excellent way to learn information that is not super conceptual in nature but writing out the information is also another way to retain information. Studies have shown that the more ways one learns their material, the more likely it will be remembered. If writing is not an option for you, there are free flashcard generating websites like Quizlet.com that allow you to type in the information for the front and the back; then you print them. The site can automatically create tests and study guides, which is also helpful.
2. Color Coding Material- This can also help. I use yellow for the key terms/definitions, orange for little critical thoughts, blue for statistics/numbers/dates, green for conceptual ideas, and pink for any miscellaneous information of importance. This is my system, but any color can be used for anything. It is another method to ensure data retention.
3. Get a tutor or go to office hours- As freshman, we hear it over and over."Go to office hours", "Get to know your professor," "get a tutor." Yet, most people, chronically ill or not, don't take advantage of these resources. Most teachers love it when students email with questions, stop in for office hours for clarification and make an extra effort to do well. Freshman year, I did not go to office hours regularly, and it showed in my grades. Now my grades are much better because I work with my professors regularly. There's no shame in getting extra help if you need it. It is better than failing the class, losing money, and having to retake it.
4. Highlighters- I separated this from color coding because the strategy is a little bit different. Highlighters help me keep my place and focus while I am reading. On bad days, I highlight the whole page just to keep my place.
5. Mnemonics- The sillier or more ridiculous the mnemonic is, the better I remember it. It can be an advantageous strategy.
6. Reading out loud- Sometimes reading aloud can help to focus on the material, especially when there are hundreds of pages you need to read. It keeps you from going on autopilot and merely skimming the material.
7. Study group- Studying is less miserable with friends, and you can quiz each other, which helps both of you to study because it forces on to answer the question and one to explain why the answer is what it is.
8. Don't cram!- Our brains are taxed enough as it is, there's no reason to exacerbate your conditions by overworking yourself. A little bit every day goes a long way.
9. Make a study timetable. Fill in doctor’s appointments and treatments in first. Then add the things you want to do, hobbies, sports, clubs, volunteering, etc. Next, add in work, and the time you will be studying. If you add the studying in first, you won’t have time for other things, which means that the study plan will go out the window faster.
10. Take a reasonable amount of credits. I always say I would rather take 12 credits a semester and end up with a 4.0 and on the Dean's List versus taking 18 credits, getting a 3.25, and not doing anything fun. If you can't take a full load, that's perfectly fine! Slow and steady gets the diploma!
11. Time management is so important in the life of a student. We only have so many spoons a day to accomplish everything we need to, so it is important to ensure that we are maximizing our chance to succeed. That’s why I avoid procrastinating. (Well, usually!) It is easier to do work when I am not as symptomatic, but sometimes it can be hard to motivate myself to study when I am feeling a little better versus doing something I want to do.
12. Most importantly, stay organized! I recommend a single notebook for each class with a large binder with several folders. Label those folders and keep all the papers inside. This keeps them organized, prevents loss of important papers and assignments, and keeps them from getting wrinkled.
When I found these strategies, my grades dramatically improved despite all of my conditions. It was not easy to find them, and some of them don’t work every day. It is all trial and error, but hopefully, this list gives you some places to start. While this is directed at individuals with chronic illnesses, these strategies can be easily applied by anyone.
People frequently ask me how I balance and manage so many conditions while taking on college too. There are many strategies, but these are some of the best, most practical tips.
1. Meet with the disabilities office on your campus a few months before you are scheduled to start classes as a freshman. Every university in the United States, under the Americans with Disabilities Act of 1990 (ADA), is required to provide such services. Meeting before the start of the academic year is an excellent opportunity to get to know your disabilities counselor. They will more than likely ask for medical documentation from your doctor to determine what accommodations are reasonable. Even if you have no intention using accommodations, I strongly urge you to register anyway. That way, if anything unexpected comes up, your information is already on file, which saved everyone the headache.
2. Check in with your disabilities counselor via email, phone, or in-person meeting every few weeks, even if it is only to say that everything is going well. This allows them to track your progress. My semester of my freshman year, I met with my disability counselor once a week. Now as a rising senior, I go to an in-person meeting with my disability advisor once a semester in the beginning, and I email her academic and medical updates every two to three weeks.
3. I have found that having a paper calendar/planner is very useful. On the big calendar, I write down major assignments, exams, doctors appointments, the days I have to work, and the days I am scheduled to volunteer. That way I can see all of the major stuff in relation to appointments, treatments, and hospitalizations. On the single pages, I write everything else about my day.
4. Like many people with chronic illnesses, I struggle with "brain fog," which complicates my academics. Here are some of most effective study strategies:
a. Flashcards- Not only is making flashcards an excellent way to learn information that is not super conceptual in nature, but writing out the information is also another way to retain information. Studies have shown that the more ways one learns their material, the more likely it will be remembered. If writing is not an option for you, there are free flashcard generating websites like Quizlet.com that allow you to type in the information for the front and the back; then you print them. The site can automatically create tests and study guides, which is also helpful.
b. Color Coding Material- This can also help. I use yellow for the primary terms/definitions, orange for little critical thoughts, blue for statistics/numbers/dates, green for conceptual ideas, and pink for any miscellaneous information of importance. This is my system, but any color can be used for anything. It is another method to ensure information retention.
c. Get a tutor or go to office hours- As freshman, we hear it over and over."Go to office hours", "Get to know your professor," "get a tutor." Yet, most people, chronically ill or not, don't take advantage of these resources. Most teachers love it when students email with questions, stop in for office hours for clarification and make an extra effort to do well. Freshman year, I did not go to office hours regularly, and it showed in my grades. Now my grades are much better because I work with my professors regularly. There's no shame in getting extra help if you need it. It is better than failing the class, losing money, and having to retake it.
d. Highlighters- I separated this from color coding because the strategy is a little bit different. Highlighters help me keep my place and focus while I am reading. On bad days, I highlight the whole page just to keep my place.
e. Mnemonics- The sillier or more ridiculous the mnemonic is, the better I remember it. It can be an advantageous strategy.
f. Reading out loud- Sometimes reading aloud can help to focus on the material, especially when there are hundreds of pages you need to read. It keeps you from going on autopilot and merely skimming the material.
g. Study group- Studying is less miserable with friends, and you can quiz each other, which helps both of you to study because it forces on to answer the question and one to explain why the answer is what it is.
h. Don't cram!- Our brains are taxed enough as it is, there's no reason to exacerbate your conditions by overworking yourself. A little bit every day goes a long way.
i. Make a study timetable. Fill in doctors appointments and treatments in first. Then add the things you want to do, hobbies, sports, clubs, volunteering, etc. Next, add in work, and the time you will be studying. If you add the studying in first, you won’t have time for other things, which means that the study plan will go out the window faster.
j. Take a reasonable amount of credits. I always say I would rather take 12 credits a semester and end up with a 4.0 and on the Dean's List versus taking 18 credits, getting a 3.25, and not doing anything fun. If you can't take a full load, that's perfectly fine! Slow and steady gets the diploma!
k. Time management is so important in the life of a student. We only have so many spoons a day to accomplish everything we need to, so it is important to ensure that we are maximizing our chance to succeed.
5. I also find that I have to be as comfortable as possible while studying. I keep my medications, some water, and my heating pad nearby, so I don't have to get up once I'm comfortable. Bear in mind that sitting at a desk many not be comfortable for everyone. I love studying on the couch, and when I am awful, I do all my work in bed.
6. Plan for the worst and hope for the best. Make sure that you are making your professors aware of your conditions as they change and that they are unpredictable. You can be fine one hour and in a life-threatening crisis the next. I always let my professor know up front that I am in the hospital a lot and that I have frequent treatments and doctor's appointments. While I try to schedule this stuff outside of class time, sometimes it is not up to me. It is critical to tell them all of this upfront, so if something does happen mid-semester, they've been warned, and they have no reason to think you are "making it up" to get out of something.
7. If your mobility is impaired, locate the most readily available entrance BEFORE you need them. There is nothing worse than being late to class because you couldn't find the handicap accessible ramp, the automatic door wouldn't open, or you couldn't find an entrance with without several flights of stairs. The same goes for elevators. Know where all of them are located on campus.
8. Get sleep. Most people can pull an all-nighter without issues, but for college students with bodies that are constantly at war, sleep is a must-have. Seven to nine hour each night may be unrealistic from a medical perspective and an academic demand, but seize any opportunity you have to get some sleep.
9. It is okay not to be involved with every single club or organization on campus. Pick one or two and focus on them. This is also an excellent way to get some leadership positions if that so interests you and make some friends.
10. The alcohol and the parties are not all they are made out to be. For many (in addition to being minors), mixing alcohol with medications can be very dangerous and even fatal. This is why, other than the fact that I am not 21 yet, that I do not partake in alcoholic beverages, nor do I attend parties where people would attempt to tempt me. The key is not putting yourself in a situation where alcohol is present. I am perfectly happy with my ginger ale or lemonade, and my friends understand that.
College is supposed to be the best four years of your life. For many, it is the first time we are leaving home, and we are forced to rely on ourselves with the support of friends and family. With the proper accommodations and strategies, we can get that degree!
Five years, 60 months, 260 weeks, 1825 days, 43800 hours…
It is so hard to believe I’ve been fighting countless health problems for 5 years now. My first diagnosis was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). Dystonia, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome (EDS/JHS), dysautonomia/orthostatic hypotension/vasovagal syncope, asthma, seizures, migraines with aura, irritable syndrome and other undiagnosed GI issues, fibromyalgia, myofascial pain syndrome, SI joint dysfunction, peripheral neuropathy, chronic tension, chronic idiopathic uticaria (CIU), and a neuroautoimmune condition resembling stiff person syndrome, which has vocal cord dysfunction (VCD) associated with it. Of course, I have had the hearing loss since birth and it is completely unrelated to all the other conditions. With this many conditions, symptoms often overlap. The biggest challenge for me thus far is managing symptoms on a day-to-day basis. For example, in order to keep my dysautonomia under control, I have to exercise. However, exercising is painful because of my hypermobility and when the hypermobility flares up, the CRPS flares up, which can exacerbate any one of my conditions.
If I completely lost you with my long medical terms,that’s okay. It is overwhelming and for many of the conditions, not much is even known.
June 26th, 2012, while on a mission trip in Farmington, Michigan, I injured my finger while scraping a metal chair and a few hours later, I injured it again when a ball came flying at me and I jammed it. My dad opted to wait a while to see if it would get any better and when it didn’t, we went to ER for x-rays, which ended up showing a subluxed DIP joint (fingertip). I went to surgeon the following week and the rest is history.
The irony of this is that it happened during a mission trip and the fact that I had just gotten back from the Notre Dame Vision Conference, which gave me a great sense of peace. The Notre Dame campus is absolutely incredible and I truly believe that the stuff that I learned that week is what has carried me through the last five years.
I’ll end on this note: my life is definitely not perfect, but it is perfect for me.
It’s funny. A couple of weeks ago, a friend had mentioned to me that I had to be stressed out with all the changes and uncertainty in my life. I was like “Nah, this is normal for me.” As the next couple of weeks passed I thought about my definition of normal. Now to me, “normal” is a term that should only used to describe the settings on a washer or dryer, but if we are going to define “normal” in relation to my life, it might look something like this…
I went for my IVIG infusion yesterday. After we accessed my port, I got some Benadryl and Tylenol to prevent reactions/side effects. About 10 minutes into the infusion, I started breaking out in hives, flushing, my blood pressure dropped substantially, and my heart rate shot through the roof despite having Benadryl earlier. My neurologist said to discontinue the infusion until I get another injection of Xolair (which controls my allergic reactions), because he was afraid that I would trend further toward anaphylaxis and end up in the ICU with breathing issues. I'll get the injection Monday and we will try again next Friday.
As annoyed as I am, I'm glad we are playing it safe because my vitals were trending toward major trouble.
Fingers crossed that next Friday's infusion goes better!
I'm in uncharted territory now with my feet. It's been over 7 months without being able to move them and June 2, 2016 was the day I got back on my feet last time. Now it is all a mental game. I've adjusted to the pain of 24/7 spasms. I have my bad days, but for the most part, I'm used to it now. For the last 3 months, the integrity of the skin on my feet has diminished significantly and I have wounds opening up daily at this point. It's a battle to keep them from making a mess or getting infected. The blood flow is always less than optimal as well, which certainly doesn't help the skin issues.
An update on the neurologist front: I had a follow up appointment with my neurologist on June 5th. If we can get insurance to approve it (which they did!), I'll do 3 months of outpatient IVIG boosters and we'll talk again in September. Fair enough. The IVIG needs to build up over a period of a few months. There's been some progress, but more will be necessary to get my legs fully functional again.
The plan is to get the first booster June 23rd, one in July, and one in August, before following up with the doctor in the second week of September.
I have to say, it was extremely validating to hear my neurologist tell the resident (who actually trained at Mayo), that this wasn't a neuropsychological disease, because I have such ridiculous autoimmunity with antibodies that attack the central nervous system (and thus, make things not work the way they are supposed to). Only took them five years, at least 25 misdiagnoses, countless tests, and almost dying a handful of times before they decide it's not in my head. Nice. 🙄🤦🏼♀️
The stiff person syndrome made it on to my UPMC medical record for the first time ever and now I finally have someone in Pittsburgh who listens and has some idea of what he's talking about. Jeez, I never thought this day would come!
So yep, that's the latest on the medical front. My hours at work double this week and I'll be writing two final papers, so I'll be very busy this coming week. Many doctors appointments scattered throughout the week as well, and the insurance finally approved my Xolair injections for my allergic to everything immune system. It worked really well last time, so I'm hoping that I continue to have success with it.
When I first became sick five years ago, my favorite sport, basketball, was quickly ripped out of my life. I could no longer play, and as a high school junior, I was looking forward to getting some more varsity time. Yeah, sometimes life does one of its funny little tricks and works out weird.
The sport that fell into its place was taekwondo. I had done it for a few years when I was younger, but I wasn't very good at it to say the least. When I got super involved with basketball, taekwondo was one of the first sports cut. Like I said, I wasn't very good.
After losing the ability to walk due to extreme muscle weakness, I was determined to not let my conditions get the best of me. I could barely walk when I started taekwondo. Over the years, I've had my ups and downs with my health, but there's been one constant other than school... taekwondo. I would help out with the classes in addition to my own classes. In the last two years, walking has again become a hardship, so I do my taekwondo from a wheelchair or on my knees. Yeah, you heard me right. I used wheelchair and taekwondo in the same sentence.
Recently, I was teaching a class for 7-12
year old kids and we were having a talk on our life skill of the month, respect. The talk started just as many had started before. "What's respect?" "Who do we give it to?" "How do we earn it?" We had the kids all engaged and ready to get back to work, when one of the students when one of the students, maybe about 7 or 8 years old, mentioned that we should give more respect to people with disabilities. That perked my ears up and I was so shocked, that I was speechless. Fortunately, my instructor was on his A-game and came up with the perfect response. It went something like this:
Student: "We should give more respect to people with disabilities."
Instructor: *pauses* Everyone take a seat again. Who deserves our respect?"
Instructor: "So let's say there's a kid at school who can't see or a kid on the playground with one arm, their eyes don't oh work and that kid can't climb the same as you. Should you treat them any differently?"
Another kid: "But you should help if they need it."
Instructor (while nodding): "We are all the same. Help if you can, play together, and talk to them. This is one of the most valuable lessons you can learn boys and girls. Treat everyone the way you want to be treated. Respect must be earned."
This response was so spot on, I wish that more young people could have heard this discussion. If you teach them young, it sticks better. These kids have a taekwondo instructor in a wheelchair with multiple disabilities who hates excuses and special treatment. As my instructor told me the other day, when I'm teaching, they don't see the chair anymore; they see the instructor. Of course kids are curious, but they have an example right in front of them. With all my disabilities, I'm still held to high expectations with some minor accommodations, but do I get treated any different because I'm in a wheelchair? No. Not by the kids. Not by my instructor.
Not by my peers. Not my family.
The moral of the story is to teach kids respect and acceptance early so whenever they meet people different from them, disability or not, they know how to appropriately act. It's never to early to start!
Let's face it. No one is going to live forever and I believe that the day people realize and whole-heartedly accept that, that's the day they truly start living. The day I truly started living? April 30th, 2013, after my first major "stare death in the face" moment. When my life flashed before my eyes (and yes, that actually happens!), I realized I had a really unusual regret: I'd never been to a high school dance at the time. Weird regret especially for someone like me, but I fixed that regret, so it's all good. That's what drove me to live life fuller, and so, my senior year, in addition to school and making good grades, I did like anything and everything. Man, is it sweeter when you've almost had it taken from you! So I learned to drive, got my license, went though EMT school, and then lost goes on.
When the Mayo disaster struck, it seemed as if life would never be the same again. In all honesty, it hasn't been the same. Not even a little. The fragility and meaning of life are much more obvious. One can really find their purpose after something like that.
So breaking news... Life is 100% fatal and your attitudes in life are 100% your creation. That's actually not depressing either. We all get a "clock" so to speak. Some people have more time left on the clock and some people are burning through the time much more rapidly.
I have mixed emotions because I scared the world. I'm like thankful that I'm still here, angry that it could have been prevented multiple times, sorry that I put my family through that, excited for the future, blessed that I live each day with a purpose, and more...
I am forever changed because of that month.