Learning to Live with Chronic Illness - Care+Wear

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Learning to Live with Chronic Illness

  • 5 min read

About the Author: Brittany Hahn is a veterinarian living with her cats and service dog. She runs a popular pet Instagram for her service dog and a small business dedicated to service dog gear and accessories. 

During the summer of 2011, I watched Shawn Johnson, 2008 Olympic gymnast, try to make a comeback for the 2012 Olympics, after she had just previously tore every ligament in her left knee. Her words during her introduction at the U.S. National Championships were especially relatable to my battle with chronic illness: “I’m never going to be that 2008 Shawn Johnson because I’m no longer 16. I’m not that same girl; I’m different. If I make the Olympics again or Worlds, I’ll be the new Shawn Johnson; I’ll never be that old one.”

My Introduction to Chronic Illness

My existence with chronic illness began during my internship in South Africa, where I spent the month of August 2009, researching Great White sharks. During that month, I suffered a week-long bout of severe nausea. I was unable to keep any food down, so I was prescribed Reglan, an anti-emetic medication. It turned out that I was allergic, which led to paroxysmal spasms. I rushed to the hospital, at which I spent a couple of days hooked up to IV fluids and medications. My bout of nausea and hospital stay prevented me from going cage diving with Great Whites, which I had really been looking forward to.

Shortly after I had arrived back at UCLA in California, I began exhibiting strange symptoms including difficulty swallowing, more nausea, severe muscle and joint pain, psoriasis (an autoimmune skin condition), non-restorative sleep, fatigue, falls, etc. Throughout the year 2010, I was in the ER at least six times and saw more specialists than I had ever seen in my life. I lost almost 20lbs. Adding to my frustration, specialists told me nothing was wrong with me because my lab results were unremarkable other than a positive ANA. That summer, I began having difficulty falling asleep until 2 am, and waking up until after 2 pm. I was forced to drop my summer classes, and a notation was made on my official college record; this had never before happened to me, and I could not determine why. Pain management doctors tried me on multiple medications to control my severe pain, many of which caused terrible side effects.

My Diagnoses

It took almost a year to get my first diagnosis of Fibromyalgia and nine more years to get the diagnosis of Ehlers-Danlos Syndrome (EDS). For many patients, it takes years to get diagnosed with these chronic illnesses. These two diagnoses explain my pain and other symptoms. Fibromyalgia is a nervous system disorder that causes the body to over-interpret pain signals and often misconstrues stimuli as painful when, in fact, they are not. EDS is an inherited connective tissue disorder. There are several different types, and I have the hypermobile type. It can also cause a myriad of symptoms, with mine being hypermobile joints (thus causing joint pain), chronic pain, disturbed sleep, stretchy skin, and skin that tears and bruises easily. Many patients’ joints dislocate, but mine do not.

After receiving my first diagnosis of Fibromyalgia, I felt relieved to have a name for what was happening to me, and I finally felt understood. I did as much research on Fibromyalgia as I could. I learned that Fibromyalgia is a chronic illness, which entails a state of permanency; it meant that I would never go back to the old me. Previously, I had been a busy body; I was either studying in my apartment or out on campus for an activity. In high school, I was always out with friends.

Adjustments and Modifications

While I was adapting to my life with EDS and Fibromyalgia, I constantly meditated on what Shawn Johnson said about being her new self because it applied so much to my life with chronic illness; I too needed to adapt to this new life and accept the new me. With the development of chronic illness, I had to make many adjustments to how I lived my life. I had to give up adult gymnastics. I began physical and occupational therapy. I even had to give up how I studied or participated in social events in both college and then in normal life. I could no longer stay up all night without being in a world of pain for the next few days. I suddenly had to monitor what I did during the day to make sure I did not “overdo” it, which often changed as a function of a multitude of factors, including the amount of sleep I had gotten the night prior, intensity of activities in which I participated, stress, eating habits, my agenda for the next day, etc. I began taking a reduced course load at UCLA, which made it easier for me to take care of myself and complete my classes. I started taking many medications, and while I would rather not take any medications, I am glad they help me. Almost as important, I had to emotionally come to terms with my new life and the modifications I had had to make. It took a while to realize that the way of life I previously had would not work in this current predicament, and I had to change how I did things. I had to redefine the expectations I had already set for myself.

My POTS Diagnosis and Implanted Medical Device

Throughout the years, Shawn Johnson’s quote has remained my mantra as I have accumulated medications and diagnoses, including Dry Eye Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and chronic gastritis. I have also accumulated several mobility devices, including a walker, cane, and service dogs that I trained myself (I am currently on my second service dog in training). This past year, I developed POTS, which is often associated with EDS, and is caused by autonomic nervous system dysfunction in which the heart beats too fast when standing. For me, it manifests as tachycardia when standing, pre-syncope, nausea, shortness of breath, palpitations, dizziness and being lightheaded, among other symptoms. It is incredibly disabling.

Most medications had not been effective for me, so I began receiving IV saline infusions as treatment. It has been the most efficacious, although, with repeated peripheral IV catheter placements, I started having issues with bruising and scarring of my veins. It was determined that a port-a-cath (port), an implanted medical device, was the best solution for me to save my veins and allow me to continue my IV saline treatments. A port is a central line implanted under the skin that connects a catheter (a thin tube) to your heart through the superior vena cava, and provides permanent venous access to my heart. It is accessed by inserting a special right-angle needle into it, after which a sterile dressing is placed over it. A port can stay accessed for up to 7 days. The Care+Wear port access shirt has been a big help on access days, so I do not always have to wear a tank top. To expose my port, I can simply unzip the part of the shirt that overlies the right side of my chest. Living a life connected to tubes and a fluid pump has been another adjustment that I have made, and Shawn Johnson’s quote has assisted me through this transition as well. I am grateful that saline infusions give me relief from my POTS and some normalcy back into my life.

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