| My battle with Histiocytosis began when I was 12 years old.
Of course, at that time, we had no idea that it was histiocytosis and it really took a course of 8 years of various illnesses before I was properly diagnosed.
my story
the lessons
my inspirations
my story
(began when I was 12 in 1990)
Strange that at times I would look back and be awed by my own strength in all the tough times.
My story really began the summer I turned 12 and my numerous hurdles with Histiocytosis lasted all the way till I turned 20. (I'm still battling the aftermath of what Histiocytosis has left me everyday - but things have really settled down since then.) It was during the summer vacation of 1990 that the first signs of my being ill surfaced. I began to drink a lot of fluids and having to go to the washroom constantly. In fact, my mouth would dry up and get sticky all by itself in ten minutes if I didn't have something to drink. I was leaving to go to the washroom every half hour, what I drank just went right through my system, bypassing all my organs. I grew very tired quickly from having to constantly leave for the washroom in the middle of the night. (7 or 8 times a night)
I was pulling away from average 12 year olds and my parents' initial reactions to prevent me from drinking too much so that I would stop leaving for the washroom made me extremely irritated. Needless to say, I was depressed and frustrated at my sudden adversity.
So when my problem only seemed to get worst, I was finally brought to my doctor for a thorough examination. CT Scans, blood tests and water retention tests were performed, leading my new Endocrinologist to believe that I was suffering from Diabetes Insipidus.
Diabetes Insipidus is a special form of diabetes where a hormone (ADH -antidieuretic hormone) normally secreted by the pituitary gland is no longer produced. Thus without this hormone, my body did not know how to regulate the water level in my body. Upon this diagnosis, my doctors informed me of a simple and efficient treatment -- that I take a small dosage of the ADH hormone every night for the rest of my life. I was absolutely ecstatic when I heard the good news and was positively thankful that I could finally return to my everyday.
Two years passed before I stepped into another problem with my initial diagnosis of my illness. I have had regular visits right up to the two years and during the routine CT scan in 1992, my doctors discovered that there appeared to be a growth on my pituitary gland.
I was told the possibility of having a brain tumour and was told to obtain an MRI (Magnetic Resonance Imagery) scan for clearer pictures and diagnosis. At the same time, a bone marrow test was performed on me by my new Hemotologist.
Although the bone marrow test was a fairly painful experience, the prospect of a brain tumour, in my mind, was far more stressful and devastating. I cried myself to sleep many of those nights.
To my relieve though, the apparent tumour turned out to be an enlarged pituitary gland. My doctors were not too concerned about this matter since my bone marrow test returned negative for any problems.
After that event, my life became a gift and no longer my possession.
After this time, I also developed occasional skin rashes around my neck, on my eyelids, ear lobes and areas around my joints. My skin became ultra sensitive, which led my family physician to refer me to a Dermatologist and dozens of different ointments.
However, it wasn't until almost my seventeenth birthday before I took another blow from being ill.
It was a routine day in December consisting of a day at school and a night at the church catechism class. At around midnight, my upper chest and back areas began to hurt a lot. I was hyperventilating and was having difficulty breathing right before my mother popped a pain-killer in my mouth. Although my mom told me to visit the ER right away, I convinced her that I would visit my family physician instead the very next day when things calmed down.
When I arrived at my family physician's office the next afternoon, I felt completely recovered from the night before. However, my doctor suggested that I take a chest X-ray as a precaution.
Thinking that I would be out of the hospital in a few minutes, I was completely shocked when the nurses shot out of their rooms to inform me that I'll have to be admitted into a hospital because 40% of my right lung had collapsed --a Spontaneous Neumothorax. I was surprised and persisted on questioning whether they had the correct X-rays.
Seeing that I was still sixteen, they rushed me to the Children's Hospital in an ambulance. I must say it's not everyday that you get to ride an ambulance with sirens blaring and oxygen masks pumping while you're feeling like a million bucks. It was neat, and my being ill was the last thing on my mind.
When they wheeled me into the ER at Children's Hospital, I was rushed to the front of the line. Apparently, a 40% collapsed lung is a very serious problem and most patients at this stage would have extreme difficulty breathing. The doctors there informed me that I would have to have surgery right away to pump out the air that was pressing on my lungs. I really didn't know what to think. It was unexpected, unrehearsed, unbelievable.
My surgery went fairly well that evening and for the next four days, I had a tube attached to the side of my chest. I have no recollection of the surgery because I was under anesthetics. When I returned to my room from surgery, it was midnight and I was extremely tired. Throughout that night though, I remembered calling for my mom every hour or so as the pain slowly increased upon the wearing off of the anesthetics.
The morning after was one of the worst ones I'd had when the pain from the side of my chest kept coming back and the food I ate kept resurfacing from my stomach. After a few days though, my tube was removed and I was released. My doctors had no idea why this occured and made no further investigation into the matter.
I was just glad that my mom made me see the doctor that morning and that my physician had insisted on an X-ray or I would have probably gone into Respiratory Arrest that following night. So, I was granted life again. I felt like the luckiest person in the world.
Not knowing what still laid ahead of me, I really thought that the worst was behind me. So I went about my everyday business, landing an awesome summer job and attending school in the evening in the summer of 1997. I had regular visits up to this point and was told by my doctors that I had progressed extremely well. (Sometime before this, I had also taken a Triple Bolus test to which my doctors indicated my shortage of the hormone thyroxin in my body) But when I started to wake up every other night to a shortness of breath and pain in my chest in June, I knew trouble was knocking again.
For some odd reason, my family physician kept insisting that I was just way too stressed. By the middle of July, I was having difficulty walking. I had to continually take pain-killers every four hours to keep from having my back and chest hurt. My friends suggested my trying massage therapy to which I thought would be a good idea upon my becoming more and more desperate.
My first session there was absolutely horrible. In fact the session went fairly well until I had to get off of the bed. I felt completely paralyzed. I was catching my breath and I couldn't walk with my back straight. In fact, I could hardly walk without feeling a sharp pain in my chest and back. The massage therapist thought that I was just totally over exaggerating my situation and told me that I would be fine. It took me 20 minutes to walk from that office to my car which was only located down the same block.
For some odd reason beyond me, I kept returning to the same massage place for six or seven times with each session ending with me in unconceivable pain. By this time, I had stopped going to work (since I can't even walk, let alone drive) and I spent most of my days making all the world's effort to walk from the front of my house to the back of my house.
I was extremely frustrated because it would take me half an hour to get out of bed, another hour to catch my breath from getting out of bed, half an hour to go down the stairs and another half an hour to catch my breath and ease my pain from walking down the stairs and so on. I was losing a lot of sleep and everything that came so easy to me all my life became this impossible and gruesome task for me. I couldn't put my own clothes on and I dreaded having to go to the washroom, which led me to drown myself in my diabetic medication day in and day out.
My pain had gotten so bad that I was no longer taking regular or even extra strenght pain killers. Instead I was taking Codine and antidepressants everyday.
My next desperate attempt led me to a Chiropractor who thought that he had the perfect solution. He told me that he could feel one of my thoracic vertebraes out of alignment and that he could "snap" the bone back into position. I was somewhat happy about his optimism since pain has then almost become a part of my daily living. But when he attempted to slide the bone back in line, I screamed in a way I never even knew possible. It must have been horrible because when I finally walked out of the office, the awaiting patients all stared at me in horror. Needless to say, my vertebrae was still sticking out of my back. The chiropractor then requested for an X-ray of my vertebrae.
I've been traveling to and from X-ray appointments for the entire summer since I've been afraid of another lung collapsion, but a bone problem was never investigated upon. So when the doctor came back to inform me of a compression fracture on my vertebrae, I was absolutely relieved that I had finally pinpointed the source of my pain for the last month. I knew I was not stressed and despite my doctors attempts to convince me that I was, I still couldn't prove it until then.
After locating the problem, all my doctors were on me 24/7. In fact, my family physician even travelled to my house a few times knowing that I was still feeling seriously sick.
Before long, I had dozens of blood tests, full body X-rays, densitomitry and radioactive isotope bone scans. But for a final diagnosis, I had a biopsy on my vertebrae which my doctors warned me a lot about. Since it was so close to the spinal cord, the doctors had to perform the biopsy while CT scans were taken after each cut or drilling were made.
The procedure took a long time and the results came out positive, positive for Histiocytosis X.
It was strange, but I was absolutely relieved that they had found out exactly what was wrong, living in the unknown was more horrifying.
By this time though, I have had a lot of pain killers and my pain was slowly lessening. My doctors suggested Chemo or corticosteroid therapy but seeing that I was slowly recovering myself, she suggested holding them off.
In fact, what I've been having for the last eight years were all related to Histiocytosis X. She said that Histiocytosis X may attack anytime, anywhere and that I would most likely carry that uncertainty of whether it'll return for the rest of my life. Finally knowing that there was a link for all I've been through though was a big plus for both myself and my doctors.
the lessons
 I'll bet you can probably anticipate the kinds of things I would say here.
I don't really think that I was really scared about being sick every time, I was more often frustrated then anything. I kept asking God why I had to be the one, thinking that I couldn't be that "one" myself, ever.
However, my sickness brought me a lot of great things - one being a wonderful conversion. I was baptized Catholic a while back before my being ill. Being fairly young when baptized, I knew little about my faith and even less about God. When I first got sick, I was just stepping into my teenage years - and I remember how often I thought I wanted to be alone and independent. Like any rebellious teen, I thought I can certainly take care of myself and I'm on top of the world - most importantly - I wanted to control every aspect of my life. Funny how God always reminds us that we cannot live without him. The times I was sick brought me to a realization that however I try to control my life, there is a greater power, a greater will. The more questions I had and the more time I spent learning about my God, the more I realized how great and awesome my God is and the more I appreciate my life and everything in it.
I want to thank God and give him praise - for all the hardships, because they made me strong - and they led me to know God's love and God's will. Of course there is still so much to learn about him - and so much I want to do for him - but I love being Christian and I LOVE working for HIM.
Like many people out there, it's easy for me to get caught up in the popular culture of materialism and wants - society enforces that in our minds through popular media. That's when I have to remind myself of the past - and remember that there are many priceless possessions in this world - and those are the ones we need to treasure the most - like our health, our family, our friends and our faith.
my inspirations
 There were several things that kept me going all this time. One being the deep faith I have in God. I'm not sure whether everyone turns to God when conventional medicine fails, but I'm sure glad my parents exposed me to my christian religion when I was younger.
Having understanding parents who support me and pull me out of my despair everytime I become depressed is something I should be forever grateful for. I'm not sure whether they inspired me, but I can be sure that they helped me to understand that I too can be inspired despite all my problems.
I always wonder how my siblings must feel when I constantly pull my parents to me from being ill. I feel horrible when my parents have to accompany me to every one of my physicians' appointments and having to leave my siblings at home. But I'm glad that I do have very understanding and caring siblings to comfort me whenever I feel overwhelmed.
My friends are also wonderful to me. Many of them make every effort to contact me even through long distance just to check on me.
Thank you so much all for being the light in the dark.
Hope you'll enjoy this website!
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You can also contact me through the online form.
May God watch over you and your family all the days for your lives!
Luv, Amy
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in April 2007 to Rome & Venice!