Monday, September 23, 2013

Confusing the Professor

Confused Professor:
My (Social Work Grad School) professor assigned us to write a reflective paper about our biological history. He said to be sure to include all medical, physical, etc. Discuss infancy-present. Any med problem, illnesses, developmental, cognitive problems, and how everything affected us (including academically). The whole thing is only worth 5 points. But he said to be detailed. He has no clue I have Cystic Fibrosis or other problems. I think the assignment is a little personal, especially if we have to share... So I decided to go out and write it all. I want to see his reaction as he hands me back this 8 page (5 point paper). (I included an eco-map, and references in class too).

feel free to read, skim, or skip :-)

I was born 12 weeks premature, life-flighted to another hospital, and had a major surgery within hours of my birth. I was born with a severe intestinal blockage and many  other medical problems. I was diagnosed at 2 months old with Cystic Fibrosis. defines CF as “Cystic fibrosis is a life-threatening disorder that causes severe damage to the lungs and digestive system.” Doctors believed I had CF before I was diagnosed. This was due to my being unable to tolerate food, as well as my lungs’ and liver’s poor functioning; however, they were unable to produce enough sweat from me to do the proper diagnostic testing. I remained in the hospital until I was 6 months old. When I was released I was behind developmentally. My mother worked with me continuously to ensure that I received the amount of medical and developmental care I needed.  Every day I did 4 hours of breathing treatments, including manual percussion; I played developmental games, and was on a strict every 15 minute feeding schedule. In an interview my mother stated that “The amount of time between feedings grew as the months went on, but the amount of physical, developmental rehabilitation and other medical treatments kept her busy all day”. Even my eyesight needed work. I received glasses at the age of 12 months old. I was hospitalized numerous times for stomach, lung, and other medical problems off and on as an infant.
By the age of two my parents could tell I held myself awkwardly; I walked on the outside of my right foot (it looked as if it was folding under me). I held my right arm at a 90 degree angle at my side. I talked out of the right side of my mouth. My uncle jokingly used to say I was Fred Flintstone. My mother took me to a Shriner’s Clinic and got me examined. I was diagnosed right away with Cerebral Palsy. I received extra workouts, exercises, and stretches for mom to do with me, along with a leg brace. I wore the leg brace until I was 10 years old. After 10 I was able to wear it just while sleeping and at age 12 I gladly said goodbye to it and its itchy Velcro straps.
I had many seizures as a toddler, some were considered grand mal. I was on Phenabarbitol and Depakote. By the age of 6 I was completely weaned off my seizure medications and responded just fine. However, around the age of 20, I started having seizure type activity. Neurologists say it is due to lack of oxygen from my CF. So on occasion if I’m not getting enough oxygen, I will go numb, lose control of most my muscles, and have a hard time focusing my sight. I still hear people, but it sounds like slow motion. I respond very slowly and can at times appear “creepy” because of how slowly I move or talk. I can tell when the seizure episodes are about to happen. If I’m in public I try to just pretend to be tired, even though I’m terrified. I have no control over how long it lasts and hate not being able to feel my body. My family, boyfriend, and friends can tell when this is happening; just having them there helps me feel better.
I was developmentally behind until the age of 5 in pretty much all developmental milestones. Some areas, I was better at; I was always very curious and critically thinking  about everything. Physically I couldn’t run, skip, or do any major activities that would cause me to have asthma –CF related attacks. Due to Cerebral Palsy I have coordination and fine motor skill problems with my right hand. I still have trouble catching a ball, chopping vegetables, and still cannot tie shoelaces. My right side has always been very affected by my CP but over the years I learned how to work around it and sort of “hide it”. Also, physically I was and still am considered severely underweight since I am unable to digest my food properly and gain nutrition.
At the age of 5 I started Kindergarten and I loved it. I loved learning and caught up fast. I did well academically, until I went into the hospital. When I am hospitalized it is for at least 2-3 weeks, sometimes up to a couple months. This would always put me behind in school. Even though my mother always helped and sometimes we even received a tutor from the school, I’d always have to play catch up afterwards. All through school to present day I’m still playing catch up when I get ill. Trying to fit all the extra work into a small time period is difficult. It definitely had an influence on my grades. During semesters where I am healthy and don’t miss school I got (and still get) A’s. But in semesters where I miss a few weeks multiple times, I make do with a B or C. In college, I was unable to finish the work in the time for a certain professor for both of his classes. I took the D's in order to graduate on time. My lung function was low and I needed time off from school. It is very upsetting when I am unable to perform to the best of my ability. Now, I do not go into the hospital as often, instead I do the IVs on my own. I hide them under my shirt in class and nobody ever knows. It takes me longer to get better, but I don’t jeopardize my grades because of it anymore. I’ve always done well in school and want to continue to do so. I hope to use my cognitive abilities and experiences in order to do research and change the Quality of Life for CF patients. My research on the need for Guidelines and Employment Criteria for Social Workers at CF Centers is the direction for my future career path.
At the age of 12 I was diagnosed with CF- related Arthritis. During these flare-ups I get fevers, hive- like spots, and my joints freeze due to crystallization. Sometimes I can still get around, it just hurts. Other times I become sort of paralyzed. Doctors aren’t sure what causes CF-related arthritis, but it usually shows up in the teens and becomes worse with age. In the last few years I have had a lot more problems moving. I take ibuprofen and Tylenol, but refuse to take any serious pain meds. I do not believe in pain medication. It hides my symptoms and I wouldn’t be able to tell if I was getting worse or better.
I’ve had approximately 15 surgeries. Some of the more major include: multiple intestinal blockages, where parts of my intestines were removed. A couple mediports were put in me over the years. I also have had 5 hernia repairs, 3 of which were all this summer. I have a stomach tube for overnight feedings. At the age of 12 I weighed 39 pounds and was 3’8’’.  My doctors and parents sat me down and described all the positives it would do for me, as well as all the pain and complications from the surgery. I wasn’t worried about the pain, I was more concerned with people seeing it under my shirt or not being able to participate in dance. My doctor assured me after a few months the longer tube would be replaced with a small bard G-Tube Button, which resembles the blow up device on beach balls. I had lots of problems with it at first, and I missed half the school year. But, I was happy with the weight and height I had gained. In one year, I had gained 40 pounds and at the start of 8th grade stood 4’8 tall. I had enough energy to try-out and join the pom squad. My G-tube made me so much healthier over the next few years, I barely missed any 8th grade or high school. As I got older I learned how to change the tube on my own (which is replaced every couple months). My stomach feeding is something I will always need. I do over 1,000 calories a night while sleeping and try to eat over 3,000 orally. This is in order to maintain my weight. I struggle to stay above 97 lbs and I have no energy on the days I don’t get to do my stomach feedings the night before. This includes any night I work the closing shift at my job, where I get home at 1:00am. 
Besides being hooked up to stomach feeding for at least 7 hours a night, I also do a number of breathing treatments, and other medical procedures. I take pills every time I eat. Including my morning and night medications I take over 50 pills a day. I have vitamin A and D deficiencies. I take 50,000 units of Vitamin D a week, normal vitamin D range is around 1,500 units. I am supposed to do 10 breathing treatments a day, which equals around 4 hours of my day. I use a flutter vest, a vest that inflates and shakes me for an hour a day. I’m supposed to lift weights and do some form of cardio everyday too.  All of the medical required time daily would take over 14 hours of my day. I’m doing 15 hours of school, 16 internship hours, and 18 hours at the video store during the week. Since this breaks down to 7 hours a day on top of my 14 hours of treatment, I usually skips meds or sleep. I would say I’m not preparing for my future to the best of my ability, since I skip important aspects of my health. However, I’m trying keep up with it. I schedule my days completely. This way I can fit as many things in as possible. And when I get a day off I use it to do medical stuff and sleep.
The biggest challenge I have a challenge with is my lungs. CF patients have to do treatments and stay healthy in order to fight the CF. Over time, infections scar our lungs, harmful bacteria can be caught from other people also decreasing our lung function. I was diagnosed with Pseudomonas Aeruginosa in my lungs when I was younger and have been on heavy inhaled and oral antibiotics ever since. Pseudomonas is harmful for CF patients, but people without CF can carry it and it does not affect them. Spread of bacteria is the main reason CF patients cannot be around each other. It is too dangerous to our health. Most CF patients go on the transplant waiting list around 27% lung function. That’s when you have to be extra diligent to fight, to make sure you get your lungs before your time runs out. I’m preparing for my future by trying to avoid needing new lungs, or least not needing new lungs before I’m around 50 years old. Considering my allergies to four of the main antibiotics I don't want to risk it. From 2006- 2010, while attending U of I, I dropped from 65% lung function to the 35% range. The idea of a transplant scared me into taking a couple years off before continuing on to Graduate School. From 2010-2012 I jogged a lot, focused all my time on meds, and taking care of myself. I only worked 25 hours a week and I was able to raise my lung function to 61% and I even finished a 5K. However, in the last year I have slowly been declining and now I’m at 48%. I need to work on this if I want a future at all, let alone a well prepared one.
My future raises a lot of questions. I believe I will have a great future, I just need to put the extra work in to achieve it. I have to plan medically and physically for my Arthritis, beginning Osteoporosis, and the challenges that my digestion, liver, and CF will bring me. I have to find a job that I can maintain, that will allow me the time I need for my health.  I have a lot to do to prepare for my future, but I can do that. I  need to keep in my everything I need to do in order to maintain a higher quality of life for my future.  This requires continuing what I do now, while adding whatever future treatments I will require. If I maintain to keep these tasks a high priority then my future should be set.

So there it it. I'm not too worried about my not receiving the full 5 points, but figured some may find it interesting.     So hope you enjoyed this long and detailed account! :-) LOL


  1. Fabulous job on this essay. Your professor's going to fall out of her/his seat. Why don't teachers think twice before giving out assignments like this? The information is so personal - are you supposed to tell about your herpes, your bulimia, your anxiety attacks, for example? I don't think it's appropriate. Anyway, as long as you're ok with the 'sharing', I think, again, you did a bang up job of detailing your health history. You better get an A+++!

  2. Haha, I know it is a weird assignment. And thanks!

  3. Geez, your professor must be kind of strange. I think there are probably rules about how personal you can get with students, and this definitely crosses the line! If you feel uncomfortable, you could send an email to someone (dept chair?) and talk about it. Otherwise, it'll be pretty funny to see the comments you get back.

  4. yeah, I'm just waiting to see what he comments back :-) LOL.