"Falling Behind"

I’m a junior in college.
Actually, well, I should be a junior in college.
I’m actually a sophomore in college by credits, junior by age and semesters.
But I’m catching up!
          No, actually I’m not. Still chugging away at what feels like a cruise controlled speed. Chugging away at the arbitrary set number of hours you must sit in school until deemed “educated”. And I’m readily becoming more and more frustrated trying to arrange class schedules, accumulate credits in any way possible, and get a good enough grade so that I can move on. GMU has this nifty program called Degree Works that takes your credits and tells you what you still need to graduate, which classes fill that requirement, which classes have qualifiers, ya get the drift. According to Degree Works, after almost 9 semesters now, I am officially half way.
          College is not friendly towards students with chronic illnesses. Despite many universities attempts to bridge the gap with programs like disability services, the odds are still stacked against you. Many classes will drop you if you have too many absences (sometimes even 1), regardless of your ability to keep up with the work. College is also a breeding ground for germs, poor eating and sleep habits, and stress. Being physically able to get out of bed is one thing, going to class another, and then absorbing it? How about homework? Most homework either involves reading, computer use, studying, or essay writing. Most of those tasks are near impossible when eye strain, fatigue, migraines, photo sensitivity, concentration issues, and other fun cognitive issues plague your daily life. Reading that may take most people 30 minutes takes an hour for me. While most college students become sleep deprived zombies around finals too, finals for students with chronic illness can be especially challenging. Most people get sick during finals but because the pressure is on, non-chronically ill students are more likely to go to class, despite being sick and often times, contagious. This puts those of us with weaker immune systems at risk for getting very sick during finals when we are already probably pushing our limits.
           All of this and more makes me look at that half way mark and want to cry, but not tears of joy. Finishing college seems impossible (all my family out there chill, I know its not impossible and I’m not dropping out). It makes me sad because before I got sick I was so excited about college. About life beyond school. About making a difference. Now I feel like that motivation and joy of education is being slowly stripped from me. I don’t want it to be this way. I want college to matter, to be something I enjoy rather than just another constant struggle. I’m scared this fog in my brain will never clear. I’m okay with “falling behind” but I’m not okay with staying behind.

#Wheelchairproblems

       In honor of Bertha’s retirement (my current chair), and the arrival of my new chair (name TBD) I thought I would make a post about some of the pros and cons of being a wheelchair users along with some illustrious stories and bits-o-wisdom.

RIP Bertha Unkown-2016
Bertha fixed with 6 washers and a screw

Thanks are also due to Bertha for she has taken me places that otherwise would have been out of reach, and allowed me to get one step closer to being a normal college student.
A couple of days ago me and the boyfriend attempted to go visit the Air and Space Museum in DC. We drove and parked at the metro and metroed into DC. Someplace in the literal TWO blocks between the station and the museum, the screw that holds one of the small front wheels in disappeared. This means that the pin that goes through the wheel (essentially the axel) was not held in place. #howdoesthisevenhappen  (by the way this was Sunday….when it was snowing in March and cold as shit)  We had to call a Lyft driver, hope that they would have a car big enough to fit my chair, and get a ride to a hardware store a couple miles away (second time this has happened). Upon loading the chair, one of the spacers must have fallen out too. Thankfully the fellas at ACE Hardware in NW were happy to help us out. That being said, by the time this whole ordeal was over, the museum was closed so we headed back to VA. #wheelchairprobs

Pros:

  1. Good parking spots
  2. Nobody looks at your butt…nobody can see your butt
  3. Your shoes stay clean and nice for way longer
  4. You can get places really fast (as long as its downhill/flat)
  5. People all of a sudden become more chivalrous
Cons:
  1. You’re lower than everyone else
  2. You can’t always reach top shelves in stores
  3. Molehills really are mountains
  4. Sometimes even accessible places are stupidly unaccessible
  5. Clothes are not designed for the sitting figure

On Memories of Easier Days

     I was looking through pictures on my computer desperately searching for this one picture I needed for a project. After a couple of minutes I found the picture and immediately quit the application, hoping I had escaped in time. A sharp pain starts in my chest. I remember climbing mountains, and going on adventures. I remember not having to plan my life around medications, doctors, and energy fluctuations. Spontaneity. Freedom.  Carefree. Worry-free solitude. I have always been some degree of sick, in some degree of pain, and had some restrictions, but nothing compared to this. I live with constant anxiety about flare-ups, falls, canceling plans, and being alone when needing help. It’s exhausting. My 21st birthday is rapidly approaching and planning the celebration has been yet another reminder of limitations. Sure, you can break those limitations: eat whatever you want, do something physically demanding, or go to a new place where you are unsure of what you might encounter but theres a catch. Breaking rules and limitations with my body can sometimes leave me dealing with the aftermath for days or weeks following. It can mean anything waking up in the ER with no memory of what happened to simply being unable to get out of bed for days. So, is it worth it?
        For many people a 21st birthday includes hanging out with friends and family, and having their first (legal) alcoholic drinks. Alcohol is definitely out of the question because of the potential for serious medication interactions (RIP Julie). In my family, tradition is to have a family dinner at the restaurant of your choosing and then desert and presents afterwards at home. For me currently, eating causes pain, nausea, vomiting, and other TMI GI issues. I could go out and eat something I’ve missed and spend days 2-6 of year 21 dealing with the repercussions, or I could plan something not food, alcohol, or high energy centered. Some 21st eh?

I miss not having to worry about spoons, building accessibility, supervision, and germs. Those were easier days.
   
   
      

When Your Wellbeing Gets Lost in the System

          I have been very fortunate to have a some brilliant minds working to keep me alive and improve my quality of life. Two of my specialists are so good at what they do that people come from all over the world to seek out treatment from there. I merely have to get a 30 minute ride. I honestly don’t know where I would be without them. That being said being a patient of these doctors who are at the top of their game and are leaders in their field has some serious downfalls.
Here are just a few:

  1. Months if not years of wait time for a new patient appointment, if they’re even accepting new patients
  2. Long periods of time in between visits after becoming an established patient
  3. They’re stupid busy between conferences, surgeries, case load, and teaching
  4. They don’t communicate with the rest of your team whether due to their schedule or their ego this can become a big problem
  5. I can’t remember the last specialist who was knowledgable about my rare diseases who took insurance
  6. Their offices are usually administrative nightmares
  7. You usually have no one to go to (with cases like mine…rare meets complex and misunderstood) for a second opinion. You’re second opinion become Google which can be dangerous.
  8. You will wind up having to try and get urgent medical care from Emergency Departments which are neither equipped to deal with your…”specialness” or too open to the concept of you knowing more than them about your conditions/ treatment needs.
        As great as it is to have some brilliant minds treating you, you wind up bearing a huge load on your own. Anyone with rare/chronic illnesses can relate to the feeling of their care getting lost in the system. I have been utterly dumbfounded by how unequipped our healthcare system is to deal with the chronically ill. According to the CDC, as of 2012 about half of the adult US population had one or more chronic illnesses. Thats roughly 120 million people. One in four Americans have two or more chronic illnesses.
      I wanted to write about this for a couple reasons, but the main reason being in response to an incident that happened a couple of weeks ago. Over the years I have slipped through the gaps in the system here and there but most of the time no major harm resulted in it, just frustration and longer waits. This time was different.
      It started like many incidents nowadays do, I had passed out in the shower and woke up in the ambulance three hours later (it was also 3am) with IVs and monitors galore and a big shrug given when I asked what happened. Upon my arrival to the ER I was fairly quickly assed by a resident and hooked up for monitoring by a nurse and left there. Anyone who has spent enough time in ERs knows that the worst thing that can happen is still being there during shift change. 0600 roles around after a couple of hours staring at the ceiling (I was in a cervical collar and left lying flat on my back) and one tech coming in to take an x-ray I realized there was no way I could fly the coup before shift change. The doctor comes in to tell me my ECG was abnormal and they’re waiting on blood work results (which they never drew). He told me my new doctor’s name and that he will come in when he gets here and repeat the ECG. If its abnormal again they’ll admit me but if it’s normal they’ll send me home to follow up with my cardiologist. 0900 rolls around, no doc, no repeat ECG, no bloodwork. I call the nurse. She takes the blood seemingly pissed off that I was checking up on things trying to get answers. 1130: nurse comes in and hands me my discharge papers saying she can’t find any of my four doctors to talk through them with me but they need the bed so they’re discharging me. I ask about the repeat ECG. She shrugs. I get frustrated and leave.
          I call my cardiologist and he agrees to see me later that day. He does an ECG and it was once again abnormal. He reviews my medications and asks me about one that I started the week prior per orders from my GI doctor. “This medication has a blackbox warning for causing a prolonged QT interval which is very dangerous. Your doctor should have never prescribed you this. You should not have been discharged. You need to stop this medication immediately and go see an electrophysiologist.”
Note to self: need to find new GI doctor.
Note to self: call cardiologist when before taking any new meds
Note to self: stand up for yourself in the ER
Note to self: you need to be on your toes, you’re health and safety is your responsibility

        Several doctors appointments later and the issue was addressed with relatively few repercussions (lucky compared to what the situation could have been). I now have to get a heart monitoring chip inserted above my heart to collect data and try and figure out if there is another underlying condition.
        It scares me to say I got lucky because that means things could have gone way worse. I’m constantly worried for the day that I won’t get as lucky. When will it be? Will I be alone? Will I get to the ER but have it be dismissed?