disAbled

I was in college when I was initially put on oxygen. It was during spring semester of my sophomore year. My breathing had been gradually been declining to the point that I needed oxygen. It was around the time that I was diagnosed with CVID. I had had many boughts of pneumonia, been the hospital quite frequently, and intubated ~10 times in 6 months. I came back to campus after being in the hospital, discharged on home oxygen. Some people in the administration asked if I could go to school. I remember when I was asked this that I just stared at the person asking in a complete state of puzzlement. I could not grasp why they would be asking if I could be at school. My doctor had cleared me physically. I knew no other reason why I couldn't/shouldn't be there. I asked them why they felt this way. They said, "well you're on oxygen" as if this statement explained everything. I looked at them and told them that being on oxygen hadn't changed anything. My lungs didn't work; I had difficulty breathing and need oxygen to help me, but my brain still worked perfectly fine. In fact, It worked better than at least 90% of the other students. I had never really considered myself disabled. I have never considered myself disabled, even through all of the challenges I have had to overcome. I remember starting college as a freshman and receiving a letter in my school mailbox asking me to meet with the school's disability coordinator. I was completely confused. Why did I need a disability coordinator? I wasn't disabled. When she suggested I get accommodations I could use for my classes, such as more time on exams, the ability to turn assignments in late, or take exams late. I got angry at this. I didn't need accommodations. There was nothing wrong with my brain, and I just wanted to be treated as every other student would be. I later learned to take these accommodations because they did help when I was sick and in the hospital. Accepting these accommodations didn't change how I was graded. It didn't mean I was weak, couldn't hack it, or was stupid. I was graded on the same level as every other student. I didn't have to use the accommodations set up if I didn't need them, but if I got sick and was in the hospital, they were there to help me out. It didn't give me an advantage over other students. The same was expected of me as them, but it evened the playing field, as I had extra challenges to overcome as a result of my disease, that they did not have. They were tools to help me be successful in such an environment. Though my lungs didn't work, my brain did.

For the same reason, I didn't get a handicap sticker for my car until several years after I was put on oxygen. I never considered myself handicapped or disabled. I had two legs; I could walk. I needed oxygen to be able to get around, but other than that, it didn't limit me too terribly much. There were even times I tried to run the track, with the oxygen attached to my back of course. I put the oxygen in a small backpack and ran the track. My goal was to be on the track team. I wanted to prove that someone with a handicap, like me, could do just as much as an able bodied person, so long as they had the modification to do so, such as wearing oxygen or having a prosthetic leg. One of my friends in college had been born without any legs. This didn't stop her at all. She was on the softball team, an excellent athlete. With her prosthetic legs she was able to do nearly everything anyone else could. I knew of people who were considered able bodied, but were able to do much less. It wasn't until my lungs had declined quite significantly and I was in chronic respiratory failure, that I broke down and got the sticker. By that point, I had no other options. I couldn't walk long distances and could only go anywhere if there were handicap spaces available. Unlike most people who would love to have a handicap sticker because they could park closer, I had fought to not need one. For me it was a defeat, one that symbolized my disease had won. I mourned the day that I got my handicap sticker. It represented the extent of the decline in my health. Then I needed a cane to walk. Now my mobility was affected. I couldn't walk long distances. I certainly couldn't walk long distances without the cane. Each thing was a blatant reminder of the progression of this disease and the losing battle that I was fighting. Now I'm in a wheelchair.

While part of a disability is about the functional loss of ability, there is also the body image, and how you now see yourself. The functional loss is honestly the easiest part to live with. Yes, you have difficulty walking, but you can use a cane, walker, or wheelchair, whatever the case may be to get from point A to point B. That isn't the problem. The real problem comes in how you see yourself. You used to be completely physically able. You could go and do whatever, whenever. Now you are limited and in many ways; you become isolated. It is hard not to lose your sense of self in the process, to remember that you are still a valid and worthwhile human being. Your worth as a person is not based on what you are physically capable of doing, whether you are able to walk, but on who you are as a person and the value you bring to those around just by being yourself.

Before the trach I had planned on tutoring through the summer. I had tutored a student in biology and this year she would be taking chemistry. She struggled academically and had a learning disability. Her biology teacher had suggested taking chemistry in the community, which wasn't a true chemistry course, but a nonsense course. She didn't think she was capable of doing the regular chemistry course. My student wanted to go to college, and colleges would require the regular chemistry course, not the chemistry in the community course, to be considered for admission. I planned on helping her through the summer, introducing her some of the key principles, so that when she saw them in class she would already have a basic understanding. I would continue to tutor her through the class. The trach prevented me from being able to work with her over the summer. I was unable to talk and this made tutoring quite difficult. After doing rehab my speech had improved and I wasn't concerned with communication. Her mother still needed a tutor for her, and though I had a physical difficulty and couldn't yet drive, so long as she came to my house or my mom drove me to meet her, we could still have lessons. My brain hadn't been effected. This is the first time she has come to see me. I was so nervous. I considered attempting to greet her using the walker, not the wheelchair, so she wouldn't see me as physically disabled. I worried that she make judgements and think I was less capable. My mom had to remind me that she wasn't paying for my ability to walk, but for my brain and knowledge, which had not been affected by my illness. While this is true, it is hard not to let a physical disability affect your value and worth as a person. You feel deficient, and this is carried over into other aspects of your sense of self. I have become very self conscious and almost ashamed of my physical disability, not wanting others to see me in the wheelchair. It is important for me to remember that I may have a physical disability, but I am still perfectly ABLE, able to think, able to be a valued person, able to have a purpose. This hasn't affected my worth. There are still many things I am not just capable of doing, but that I excel. My ability to walk hasn't affected this in any manner. My thoughts return to my friend in college born with no legs. This was a strength not a weakness. I am not DISabled, but rather, disABLED, the concentration being on what I am ABLE to do, not what I am not.

Warning Signs of PIDD

For most people, the common cold is rarely more than a minor inconvenience; however, for patients with PIDD the common cold can be a life-threatening event. In a person with a normal, healthy immune system, the immune system protects them from infection. In people with PIDD, the immune system is either absent or does not function properly. This causes them to be more susceptible to infection, and when they do get infection, they are not able to fight it off.

How does a person know when it is a typical infection or something more serious such as a primary immune deficiency? According to the Primary Immune Deficiency Foundation, the warning signs of PIDD are:

• Recurrent - the infection keeps coming back
• Persistent - won't clear up, or clears very slowly
• Severe - requires hospitalization or intravenous antibiotics
• Unusual - caused by an uncommon organism
• Runs in the Family - others in your family a similar susceptibility to infection 

If the answer to any of these questions is Yes, then it is important to check with your physician for the possibility of a primary immune deficiency.   

Early diagnosis and treatment is necessary to ensure a good quality of life. With proper diagnosis and treatment, patients can live full and independent lives; however, without this, patients can develop serious and debilitating illnesses.

Who am I...

I thought that as I begin, I would explain a little of who I am and how I got to be where I am today. Granted, this is only a small piece of a very big puzzle. I will not say my illness is who I am, however, it is a very big part of who I am. It does not define me, but it most certainly has shaped me. I am neither ashamed nor proud of it. My health is like an arm or a leg, I cannot live without it, but nor do I glorify it's existence. It just is, a part of the larger body.

I was diagnosed with CVID (common variable immune disorder) in 2006. In short, this means that my body does not produce immunoglobulins, which are the cells that help fight infection. This means that I get infections easily, since I have no way to fight them naturally. When I do get infections I often end up in the hospital. There has been damage done to my lungs as a result and at this point I need oxygen continuously. I receive weekly treatments of IVIg (intravenous immunoglobulin) which is supposed to help prevent me from getting infections.

CVID is a primary immune disorder, which means that it is genetic. Despite its name, it is not very common - though it is one of the most common immune disorders.

The road to being diagnosed was very long and difficult. I was always sick as a child with upper respiratory infections sinus infections, and what-not. I was hospitalized for the first time when I was 13. At the time I was diagnosed with severe asthma, though my symptoms seemed to go beyond the scope of traditional asthma. Over the years, my 'asthma' got worse and I had to be intubated several times. I have been intubated, on a respirator, and in the ICU over 30 times to date. I've stopped counting at this point. I got sick more frequently, got pneumonia constantly, was in the hospital several times throughout the year.

In the summer of my sophomore year of college, I got pneumonia and never got better. I was intubated 3 times in one month. Every time I left the hospital, I was back in within a week. I constantly had one infection or another and was on antibiotics and steroids. I required continuous oxygen. I was a nursing student at the time, and told my doctor that I was immunocompromised. If I was in a large room and one person had a cold, I got their cold, except that I ended up in the hospital with pneumonia. My doctor did not believe me and told me that I did not know what I was talking about. But it was my body, and I knew it best. I knew that something was not right. I switched doctors and the new doctor ran a simple blood test - yes that is all it took. When the results came back he confirmed my fears. I was diagnosed with CVID. I was put on monthly infusions of IVIg.

At the time, I had never heard of CVID, never even heard of or thought that I might have an immune disorder. Adjusting to the diagnosis was difficult and took some time. I had to give up my career in nursing since I could not afford to get everything my patients had. I switched to biology with the intents of pursuing a career in research where I could study and perhaps find a cure to this disease.

When I first began the IVIg treatments I expected a quick fix. I expected to go back to how I was before - to not be sick and to not get infections all the time. Though I got slightly less infections, I was still sick and in the hospital with various infections a significant amount of time. The treatments were increased to every 3 weeks. Two years ago, we changed the treatment regimen yet again to once a week in hopes of getting rid of the peaks and troughs that I experienced when the treatments were spaced out to every 3 weeks. When I got them every 3 weeks, I would initially do well right after the infusions, but by the second week would start to struggle with fatigue and other such symptoms. By the 3rd week, just before my infusion, I would be so run down and get sick that it was almost impossible to function.

I struggle with other complications of this disorder. I have chronic pain and abdominal issues. I am often exhausted to the point where getting up and performing even the smallest of tasks, like taking a shower, is an accomplishment. I suffer from severe bone and joint pain to the point that some days I am unable to move. My lungs have deteriorated quite significantly from the numerous infections.

Initially, the weekly infusions helped tremendously. I was healthy and out of the hospital for longer periods of time. I was able to come off the oxygen and live a relatively normal life. I had plans to go onto grad school, but realized that this would not be possible with how sick I am. Currently, I am also not able to work because it is impossible to hold down a job if you are in the hospital and sick every couple of weeks. This has been very difficult for me both physically and emotionally.

The road I've been on is long; the path I continue on is longer. But I have hope that it will get better - somehow.