Early on I was healthier than most kids with just the occasional ear infection and colds. Then one day a cold ended up being bronchitis, a common none dangerous Upper Respiratory Infection. I was given antibiotics, to high of dosage for a undersized seven year old girl. Once the doctors realized their error and stopped the drug I had developed a rash which they thought was just an allergy from the high dose of penicillin. They told my parents it was nothing to worry about. Over the next month the rash, consisting of simply these tiny pen point size red dots, spread from just a few on my legs to nearly a hundred. I got weaker and weaker. The night before my real terror began I remember going to Burlington to shop for something for my big sister. I was so weak and in so much pain that I had to sit inside the cart (on top of all the coats cause I, being melodramatic, didn't want to sit on the metal and get a waffle butt). After shopping we went and ate, I could barely eat and and to hold myself up with tables and chairs as we walked out. My mom was getting worried at that point and had my sister help me get dressed for bed. The next thing she heard was my sister screaming. The little spots had swollen so large that canyons had been created in my skin where the 5% that wasn't the rash was circling around swelling. Some began turning from black to red. I was rushed to the ER where in the short drive there my fever spiked to nearly 106 degrees. The next several hours were a blur. I remember doctors in double covers, masks, goggles. I remember hearing one doctor explaining that they believed I had something that if my arms and legs were not amputated, a word I didn't know but soon learned, that I would die. They had the consent forms in the room for surgery in case they were proven right. I had fifteen to twenty needles injecting me with things and removing fluid, mostly from my spine. I was in so much pain that from my isolation room on the far side of the ER the screams were heard in the waiting room. Once they ruled out me having surgery they were at a loss for what was wrong and transferred me to be admitted for more tests. Over the next while I was put through more needles, IVs, MRI's, x-rays, CT-scans, and hooked up to more monitors than I knew could exist. Finally they had a diagnosis. A rare blood disorder with no known cause or cure. It could either only surface once and I would go back to being healthy or it would be a chronic illness.
I assumed that I was going to get better, after all I didn't know what chronic meant so obviously once I was released from the hospital I would be fine and back to my old self of climbing trees and playing hid and seek outside for hours. I was wrong. Days after being released I was readmitted with strep-throat. The blood disorder had severely damaged my immune system. I was not able to fight of a little common infection in children on my own. I was back in the hospital, admitted, the night before Valentines day that same year. In just over a month I had spent more time in doctors offices and hospitals than I did at home. The blood disorder also caused moderate damage to my kidneys, I was looking at dialysis if they got any worse. My life lasted like this for several years. We simply assumed that the damage from the original illness was here to stay but that the blood disorder was a one time deal like they had said. Till a month after my twelfth birthday when I had my first recurrence. My nightmare started again. Another rash, more pain than I had ever felt in my life, more damaged kidneys, and knowing that this was never going to go away.
At fourteen I had another, milder, recurrence and again another at sixteen. When I was sixteen my knees, ankles, toes, elbows, wrists, and fingers turned bruised so much from the swelling they turned black. During this time the doctors assumed it was nothing more than an adolescent trying to get attention since I was very underweight, barely 80lbs at 5'2" and my parents had recently divorced. So they gave me a few weeks of medications and sent me home with a psych eval recommendation. I was so angry that no matter how I felt I refused to go to most doctors. I knew how my body felt and I knew I wasn't crazy...the last recurrence had triggered something else in my body, something worse, and no one would listen.
A week after my eighteenth birthday I suffered a trauma that no woman should ever have to. I lost my daughter (something I will have to talk about later for several reasons). I lost her and I had to know why. I spent the next summer calling every doctor from every specialty I could think of to get an appointment. My mother finally found someone to see me and within five minutes he referred me to a specialist. The specialist told me half way through the exam what she believed I had and why and that she would run tests to verify. Two weeks later I had my diagnosis. At nineteen I was told that I likely developed Psoriatic Arthritis as a result of the blood disorder. At sixteen the recurrence likely triggered Ankylosing Spondylitis, a progressive degenerative arthritis in my spine which can move to my organs. I was right, I hadn't been crazy and when it was confirmed I cried for a week. Then I say my OB/GYN and told her...the chances are that my body, my illness, is why I lost the person I loved the most.
For nearly three years I did treatments for it; chemotherapy, every several week IV sessions, giving myself shots, and taking at times up to twenty medications a day. I finally got medication free and felt healthy. Then once again I had a recurrence. I spent the summer of 2012 in my bed so sick and in so much pain I could not even sit up most days. By the end of it I wanted to again be medication free so I stopped my pain combo cold turkey which put me into what they called "heroin like withdrawal" for several days (bright side, never have any desire to try heroin!!). The last several months went smoothly, with only a few bad days where I needed anything to get by. But now it might be back, again. Small little dots on my legs that keep multiplying is all that has happened yet I am terrified. I know how it ends. I know the pain, the despair, what it means for my future. I am back on medication to try and prevent a full blown recurrence but they haven't worked for me ever. Each day I am feeling weaker and weaker and I can't do anything about it but let my body decide when to stop.
The complete helplessness is scary but the scarier thing is knowing the strain that this puts on people around me. I have never been one to be dependent on people even when sick but during recurrences I am lucky to be able to walk to the bathroom on my own. My parents are wonderful about it and do everything they can to help me but others in my life I hate them seeing me like that so I have always withdrawn from society to hide it. My friends know I am sick, I can't hide that. But only one or two know the true extent of my illness, my story. That is why I am writing it out, I am scared of being seeing pity on peoples faces or hearing them say well "try this remedy, it will help" when I have likely tried it and it failed. So here it is, the severity of my life.
For fifteen years and two weeks I have lived in excruciating pain. My joints are slowly degrading and my spine is fusing into a solid piece of bone. I could at any time have organ damage from inflammation of the tissue and have to wear glasses because of that reason. I could end up in a wheelchair due to simply extreme damage or even paralysis from my spinal issues. I already can not feel one two because of nerve damage which is getting slowly worse. These illnesses that I have can lead to other illnesses and the medications I have taken have left me much more likely to develop cancer.
This could kill me in five years or fifty years.
It likely already killed my daughter.
Please do not take this post the wrong way. I do not want pity etc. I simply want an understanding. I can't imagine life as a "healthy" any more than someone can imagine their life with chronic illness. It is scary, it is hard, it is painful, but I wouldn't change my life. You grow up fast when you are forced to face illness at every turn. I have learned so much about life from the ladies I had treatments with and the community of support from those who have been where I am and survived past this stage of life. My illness shaped me into me. I have grown strong enough to live with smile regardless of fears. I have learned to force my way through the pain. I have learned most to enjoy the simply parts of life that most people pass over without a thought. Spending a night staring into the sky, cuddling up on a couch with a great book and just turning the world off for a time. My life is painful but there is great beauty to be found through it.
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