Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: Jen's Story.'


Pebbles on the beach

My name is Jen Swenson. I have been married to my very supportive husband for almost eleven years. I tried to warn him what he was getting into before we got married, but I just couldn't figure out how to fully explain how medically complicated I am. I've already almost died in the poor guy three times since we got married. I tell him it's my fault he has so much gray hair already. I sure stress that poor guy out but he has been there for me through think and thin. We just adopted our nine year old last month and plan to adopt more children through foster care in the future.

I have a lot of chronic medical issues and I am very complicated, so much so that some of my doctors have nick names for me; one calls me his special project, one calls me her problem child, and one calls me an autoimmune Petri dish. My body likes to attack itself for some reason, lots of autoimmune issues. Autoimmune pancreatitis (multiple bouts of pancreatitis), autoimmune hepatitis (had to have a liver transplant), ulcerative colitis (had to have my large intestine removed and get an ileostomy), Hashimitos hypothyroidism, I have two autoimmune clotting disorders that make me clot when I shouldn't so I am on blood thinners (anticardiolipin and antiphosholipid), my joints and back have hurt for about 20 years which they assume is something else autoimmune, chronic fatigue, and they believe I also have fibromyalgia, and Raynauds. My body is mean.

Jen

I found out that three fourths of my liver was scar tissue and I would need a liver transplant when I was 15. I had gone to the doctor for a check up and luckily my doctor had some labs drawn. They called me about two hours later and told me to go straight to the hospital. My liver enzymes were so high the doctors were surprised I could even walk and my liver was so damaged they said that I must have been sick for about ten years without knowing. It's strange because the only thing I ever noticed was that I couldn't quite keep up with kids my age. I thought I was just out of shape. Before I found out, I was just a normal teenager, and then, in the blink of an eye, my life changed. I went from worrying about boys and grades and school dances to worrying about if I was going to live long enough to get my liver transplant. Ever since those labs were drawn my world has revolved around hospitals, procedures, tests, surgeries, blood draws, medications... I have nearly died more times than I can remember. I have to keep a very close eye on my blood tests because at any time I could go into acute rejection and my liver could fail again. I will need another liver eventually. Sadly, they don't last forever, but there is no way to know how much longer my current liver will last. My body is constantly attacking it and damaging it along with many other parts of my body. Autoimmune diseases are complicated and hard to manage. I had to try many immunosuppresants before I found the ones that worked for me. In addition to the immunosuppresants I have to take blood thinners, thyroid medication, and lots of supplements like potassium, magnesium, iron, and vitamin D because I don't absorb nutrients as well as I should because I'm missing so much of my intestines. In addition to those medications that keep my body functioning, I take pain meds for chronic back and joint pain, and frequent migraines. People at work tease me that my locker is a pharmacy... it kinda looks like one. Oh, your head hurts? I have naproxen. Oh, your back hurts? I have Bengay... My co-workers know who to come to if they are hurting.

I somehow manage to work full time. It is a struggle with the constant pain and fatigue, but I just love my job. I work at the same children's hospital that I spent many of my teenage years at as a patient and I even work with some of the nurses, doctors, and phlebotomists who took care of me. One of the things that I love most about my job is being able to connect with patients and parents in a way that others couldn't. I often take care of kids with issues that I have dealt with and I share my story with them. It helps them to feel like they aren't alone, and like someone caring for them truly understands what they are going though. That's one thing that helps me through the tough times, knowing that I have used, and continue to use, my experiences to help others. I know that my health will always be a challenge, in fact, it will likely only get worse the older I get, but being able to use what I've gone through to bring others comfort brings me joy.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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