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My Never Ending Story: Life with Juvenile Dermatomyositis


Mandi Presley

1997 and Counting

I can’t tell you when it all started or when I first remember getting sick. I do not remember the exact date, and I will probably never know it for that matter. The hospital lost all the paperwork when it remodeled and changed its name, but I do know that it was July 1997. That is when my whole life changed, and with it all aspirations. Three months before July 1997 was when all hell opened up on me, and finally someone began to notice me. I couldn’t do anything for myself. I couldn’t go outside and play with my sisters like I wanted to. I couldn’t take a shower without help. I even needed help undressing my clothes to go to the restroom.

Every doctor that we went to in Laredo told my mom that I was fine. “She’s just being chiflada,” they’d tell her. Oh were they sooooo wrong. I wish I could revoke their medical licenses; they don’t deserve to be doctors. His name was Estrada. I don’t know his first or where he is now, only that it was Dr. Estrada who saved me the first time. I remember he was a nice man. He was older and had raven black hair. No grey and no balding spots, he had good genes. He listened and actually took notice to my emaciated body, examined it. He was smart enough to do a blood test. A simple CPK (creatine phosphokinase) panel was all anyone needed to do to see that my WBC (white blood-cell) count was off the charts and I needed to get into a hospital within the hour to see why. It was life or death and that was it. I was in the hospital for two months. It wasn’t all that horrible. I finally had something for the pain and popsicles on demand, but I hated the food they gave me, not seeing my sisters and dog, and some of the tests made me just want to give up because it hurt less.

A six year old girl should not have to get an EMG (electromyogram) conduction test or a spinal tap, for that matter. And even exploratory muscle biopsy surgery was not in the plan. But all that and so much more became my life. And I was not ready for it at all.

Finally in July just about on my damn death bed I got a diagnosis. Juvenile Dermatomyositis. 1 in 5,000 children in the United States have a form of Myositis, there are three. One in 250,000 has Juvenile Dermatomyositis like I do. And 1 in 5 million has the terminal case like mine. I have a rare auto-immune disorder in the Myositis family and it’s the worst of the three you can get. It is chronic and it is terminal, and no one should hear that when they have just turned seven, not even a week ago. But at least we finally had an answer, now we just had to figure out what that answer meant.

We went to a specialist to explain the disease. We went to a therapist to make sure we were okay and coping well. We went to a nutritionist to learn my new diet. We went to a physical therapist to get started on saving the little muscle I had left. All these doctors, and all those tears, even now I don’t think I’m ready for this, but I don’t have a choice. I can’t remember much of it after receiving the diagnoses. They say you suppress memories that are traumatic; they are right. I cannot tell you who these people were, or the dates, or what anything looked like. But I can tell you the pain.

I remember how it felt to learn that everything I longed for was gone in an instant. I could no longer dance, I could no longer go into sunlight, and I could no longer eat what I wanted. Everything changed, and I lost my innocence during those months. From then on it has always been doctors, medical insurance fights, tests, exams, surgeries, and several moments of giving up. So far I’ve counted six times I should have died. But I never do, God has a plan and that is what I think. He knows what he wants from me and I have yet to understand it. I hate that it is my life and me he chose, but there is something I don’t know yet. I’ve had my times when I wanted to give up. Times when I was so sick and the want to give up was so strong that I tried to take my own life.

Scars, ulcers, stomach pumps and ER visit receipts are what I have to carry with me now as tokens of the experiences. Because of everything that happened, I also have to say I am depressed, to the point that I am classified as suicidal. It is okay though, don’t feel bad for me, I have medication to take care of that, just like all my other problems, and since I was seventeen and finally accepted who I am I haven’t been nearly as bad at all.

Life is better; well, I guess as good as I can say it can be. When I was seventeen that is when the other life revelation happened. Grandpa, the one person on this Earth who knew how I felt and how to make me take care of myself passed away. For a while I stopped taking all my medication, I stopped going to the doctors, I wanted to die, and no one even knew. I was seventeen, so technically I was responsible for myself and didn’t need parental supervision for my medical care. It hit me one day, that same time I had the kidney infection and I saw Grandpa. Then I knew that it was all so stupid and petty. I needed to grow the hell up and just live with it, and I did. Now, I live by IDGAF-ism and that is all that matters. I live my life to please me and if I die then so be it. I have done what I set out to do and what I want.

People ask me why I go to college if I know that I’m going to die within ten to fifteen years of getting my degree, I just tell them, I take it one day at a time and don’t think about my time stamp. Since that year I have not had any relapses and have been in very good health apart for my kidneys. The doctors tell me that I may be facing renal failure a lot sooner than anyone could have predicted. Just this past week, I got another infection. I had to miss about a week and a half of school and I’m not even better now, but I know I need to put it all in the back of my mind and just continue on.

But then it doesn’t end there, it never does. I have to get another serious bout of infections. This time all throat infections though. Who would ever think that it would be possible to have three throat infections all at once? Well, apparently I can, and it sucks. This infection I missed about two weeks of class. I haven’t told my mom yet, but I am going to either have to apply for an incomplete in one of my classes or take another “F” towards my GPA. I hate that. I hate that I have to take grades that I do not deserve and its only because I had to miss class and it’s not even my fault, it’s the Dermatomyositis’s fault. That’s why I had to be put on academic probation once already, that’s why I can’t apply for the Honor’s program, that’s why I look like a failure in my parent’s eyes. They know it’s not my fault, but they still want me to do my best, and that best cannot be met, ever. If I could I would be the best student there was. I would never miss class. I am that girl who loves going to class and sitting in the middle, front and asks all the questions and knows all the answers. That is who I should be, but I love how they push me like I am normal and make me go to class. I need that in life, a sense of normalcy, and they give it to me. I love them for that.

The thing that is really scary is that this October will be the three year mark. Every three years since I was six I have relapsed and gotten sick all over again. The last time I lost muscles in my throat so I no longer had the ability to eat at all. I also began having fainting spells and lost my privilege to drive from it. I remember one day I took my sister, April, to the mall and then we stopped at the Dollar Store to buy hair ties. As I got out of the car and was walking towards the entrance I had to climb a step. I couldn’t make it and I fainted and fell to the ground. There was a car reversing as I lay on the ground; thankfully I was in front of the car and not the back. That made me think what if there was no block and she tried driving forward to leave instead. I broke down in tears and couldn’t hide them from my sister as she got out of the car and walked over to pick me up and help me walk back to the car. Moments like that hurt the most because I’m the big sister, I’m supposed to pick them up when they fall, not the other way around. And every time you do get sick, it is progressively worse, at least with the terminal case.

The second time I relapsed is when I lost 80% muscle mass in my back and 40% in my legs, and my arms were the only thing I had going for me, so I’ve kept them strong. When I get sick I need them for everything - to help me pull myself to get out of bed and from sitting on chairs and couches, or climb stairs to get to my room in my parents’ house, even to stand right and walk. It’s the one part of my body I still have going for me, so I make sure to keep my arms strong. I throw a mean left hook. But if I had never told you this story, you would not be able to tell there was something wrong with me.

I am a master of disguise; I can pretend everything is okay like I was that nice dance team captain in high school who everyone loved and was super nice and talked to all the clicks. In all actuality, I was the girl who would be gone for weeks at a time and show up randomly and always have either gained 20 pounds or lost them. I am the best at pretending, you could say I was suffering from multi-personality disorder and had two personalities. I don’t like people to know there is something wrong, and then they start judging and making assumptions. I’ll tell people who I know and I have no issues with that, but if you do not know me then I do not want you knowing that I am sick. I want to get a tattoo on my back with the non-profit organization for Juvenile Dermatomyositis’s logo and my diagnosis year on my back. That tattoo will be my last means of acceptance for what I have to live with. I’ll still pretend I’m okay because I don’t want to be treated differently, but I will tell people more then, and just be straight out with it.

One breath at a time, day by day, that’s how I’ll take it. No worrying about what could happen, just living and accepting. That’s how I get through.  

You should be thankful, trust me.

 First featured on mandi-saturday.com

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