Christmas hellos... and goodbyes

hey there... i hope everyone had a very Merry Christmas, spent with loved ones. the holidays just don't seem right without them. for me, especially.

so much has happened this year in my family alone... i am just so thankful that my health is somewhat stable right now and i'm not in the hospital. i received more than my fair share of gifts this year: coming home to be with my family, blood transfusions from those i know (my dad and future brother-in-law) and those i don't, finding good doctors and answers to my ailments, having my brother and K move to Texas.

one present under the tree that was significantly poignant was from my mom and dad... it's pale pink, probably weighs about 5 lbs., is over 50 years old, and symbolizes over 27 years of memories.

it's a brick.

but not just any old brick. it's a brick from the house i grew up in, the house we moved into when i was just three. for all intents and purposes, my memories began in that house. i remember nothing prior to moving to Texas from Illinois, and rely only on stories from my parents and siblings of life before.

my memories of life in the house with the pink brick are mostly fond and warm. being the youngest of five, i saw all my siblings leave for college, one by one... and return home at some point or another when their lives took different paths. i remember playing with my cousin and sister during the summertime, eating Blue Bell Bullets by the pool and swimming all day. i remember tying a string to my loose tooth and the other end to a doorknob to try to yank it out (i think i wiggled it loose instead). i remember the clickety-clack of my mother's heels as she walked through the house. the smell of banana pancakes and sizzling bacon on saturday mornings. looking out the kitchen window above the sink and seeing the magnolia tree in bloom. picking camellias from the tree just outside.

i remember looking inside my mother's cedar closet with rapt curiosity at all her off-season clothes, fur coats and teeny tiny bead-encrusted heels from the Philippines. i remember playing with my Barbies and making them their own dream house out of discarded bottle caps and creamer tubs and cardboard boxes. i remember having my grandparents stay with us and getting to know them, if only for a short while. i remember after they left to return to the Philippines, having appendicitis and my own dad (a GP!) not believing me. i also remember the huge white teddy bear he gave me in his guilt. :)

i remember Thanksgivings and Christmases and Easters, when the house was warm and filled with family and friends and food. i remember practicing my violin in the living room and having the cat sleep in its case while i played. i remember Heidi, our beloved German shepherd/Chow mix, and how she would take something you gave her, and politely take it to her stash behind the couch in the sunroom. i remember watching TV with my dad at night when i was little, and pretending to be asleep so he would carry me to bed.

i remember a lot of things about that house. it's no longer there–it was torn down almost a month ago. what's left is some dirt, a huge clearing where the house once stood, and a pile of pink bricks.

i found an Irish proverb which says: "Bricks and mortar make a house, but the laughter of children makes a home."

i cried when i opened my brick, which included some photos of me in or around the house. i can't in all honesty say that i ever loved the house with the pink brick, but rather the home it came to be.

are you there, readers? it's me, sheila

hi.

i know it's been a long time since i've written. a lot has happened since my last post, and i thought i would take a hiatus from writing so i could make sense of what was and is happening to me.

the last time i wrote, i was in the hospital, and i stayed there for 16 days. my infection was pretty bad and it, like a domino effect, generated an autoimmune response and also made my anemia worse. to top it off, my depression worsened and i cried just about every day.

i was in such extreme pain that even just lying in bed made me wince and brought me to tears. on several occasions, i had to have morphine to kill the pain. i felt pretty helpless, especially since i had to have my family help me to the toilet, get dressed and even shower. when family would visit, i would ride down to the lobby in a wheelchair because i couldn't walk.

because of the amount of blood being drawn from me every day, my anemia and the need for blood transfusions, i had what is called a PICC line inserted. PICC stands for Peripherally Inserted Central Catheter, which is in essence, a central line. it negated the need for an IV and repeated needle stickings. before it was inserted, i was purple and blue all up and down my arms and hands from the daily draws.

because my infection was so severe, my hemoglobin level was really low and i needed a transfusion. in addition to that anemic insult, my immune system was going haywire, and i had spiking fevers every night almost like clockwork, starting with chills and resulting in fevers as high as 103 degrees F. i would then need an icebath to bring my temperature down, which typically worked. in the early morning, i would inevitably wake up soaked with sweat, and would have to change my clothes and bed linens. this was my routine for a good two weeks.

during this time, i was on some powerful IV antibiotics, and barely had energy to do much, nor did i have much of an appetite. i had teams of doctors on my case, and at one point, i had to have a biopsy on my leg so they could rule out other conditions.

almost every day, i had a visitor (either clergy or lay) from my mom's church, which was really thoughtful, even though my faith in god was barely palpable. i'm still struggling with it.

finally, my fevers, as well as my anemia, were under control and my leg was healing enough so that i could go home.

"home" is a house which i share with my brother, sister and her fiancé, in a suburb outside of houston. my online classes started the day before i was admitted into the hospital, so with the help and encouragement (and downright cattle-prodding) of my family, i tried to keep up with my schoolwork as best as i could, despite the circumstances.

since my hospitalization, i've changed to a new Rheumatologist. after seeing Dr. Tan a handful of times, and having him run a battery of tests on me, his working diagnosis for me is early Lupus, or Systemic Lupus Erythematosus (SLE), which is a chronic autoimmune disease that is unpredictable and characterized by periods of illness (flares) alternating with periods of remission. in october and november, it seemed like my symptoms were at their worst; i would often sleep up to 16 hours a day and still feel fatigued, with flu-like aches and pains and low-grade fevers.

about a month ago, in addition to the drugs i am already taking, Dr. Tan put me on a drug called CellCept. it is actually an anti-organ rejection medication for transplant patients. the idea behind this line of therapy is to lower the immune system so that the bodies of patients who receive a transplant will not reject the new organ. for Lupus patients, the mechanism is the same, only no transplanted organ is involved, just the immune system. CellCept suppresses the immune system, which is good for the disease, but bad for my overall health. now i'm much more susceptible to infections (viruses, etc.), because my white blood cell and platelet counts are lowered.

consequently, my hemoglobin was also lowered, resulting in yet another blood transfusion. additionally, my Hematologist, Dr. McCarthy, decided to put me on Aranesp, which is an injection which stimulates bone marrow production in transplant, kidney, cancer and HIV-positive patients. it isn't indicated for anemia patients, but he's had some success with patients who have Thalassemia like me. so far, it seems to be working.

so... needless to say, it's been a tough several months. two saturdays ago, we had a garage sale to raise money for my CellCept (one month is almost $900). i overworked myself and exposed myself to the sun for too long with only a hat and a tent for protection. [the sun apparently causes flares in Lupus patients–i wear sunscreen daily on all exposed skin and try not to be outside during the hottest parts of the day.] the next day, we were supposed to continue the garage sale, but i ended up having a flare, and spent the better part of the day in bed. luckily, i applied for patient assistance from Roche, CellCept's manufacturer, and am now receiving my meds free.

they say that every cloud has a silver lining, and even though some days i feel angry, exhausted, uncertain, or just downright low, i have to remember the positive things that have come out of this whole experience:

+ i've moved back to Texas and am with my family, the best support network i could ever hope for
+ i have a better appreciation for life and its unpredictability, and as a result,
+ i try not to take anything for granted

the best thing, however, is that K is moving here! he was approved to work remotely from his job, and plans on being here by March. i am beyond excited.

at any rate, it's good to be back on the blog. i am still trying to process everything that has happened to me in the past six months, but at least i know now what i'm up against and hopefully, the CellCept therapy will force my Lupus into remission.

fingers crossed.