closing doors, opening windows

you know that phrase, “when god closes a door he opens a window”? well, that’s kind of what having a chronic illness is like.

when i found out i had all these food allergies a few years ago, i just mused that it was my body’s way of saying, “you’ve had enough of this, try something else.” i was heartbroken to find out that shellfish and berries were on that list... but it made me seek out other foods and fruits that i normally wouldn’t go for.

i can say that my life has definitely changed since becoming sick. and when i say “changed,” it’s more like “exchanged.” i no longer consume artificial sweeteners if i can help it (it’s impossible to find long-lasting chewing gum that isn’t sugar-free!) and try to eat organic fruits and vegetables whenever possible. i don’t shave my legs with a razor, get manicures or pedicures, or fly on airplanes—all for fear of infection. (i am just so grateful and lucky to have traveled when i was younger.)

i can’t do even the most mundane tasks (such as laundry) without help or K doing most, if not all, of it. (when i used to live at my siblings’ house, i once cleaned the bathroom and ended up having a flare the next day.) i would venture to say that i sleep more than a newborn baby but i still feel tired afterward. i am on more medications on a daily basis than most senior citizens and i sweat constantly from the steroids. i have so many medical bills that i am considering bankruptcy.

however, so many good things have happened because of my illness as well. i moved closer to my family and see them all the time. i joined their church and have been going when i feel well. and one of the best things that could have happened was having K move closer to be with me. i read food labels a lot more now, and am more conscious of what goes in/on/near my body. i can’t say that i’m junk-free (yes, i need to work on that), but i take my vitamins and calcium (like i always said i would one day), and i am more sensitive to things that can bring on a flare. i also give myself manicures/pedicures, which, while saving tons of money, is not the same as having someone else give you one! however, i may one day stop using nail polish altogether because of the chemical contents. i am looking into organic makeup and health/beauty products as well.

before lupus, i was one of those persons who had to do everything herself... i always thought that asking for help was a sign of weakness. but acknowledging one’s limitations is not weak, it’s human. i mean, when you’re in the hospital hooked up to an IV and can barely stand up, much less lie in bed without being in pain, it’s better just to accept help than to fight it off. especially when you need to use the bathroom and can’t walk unaided. (nothing says “help me to the toilet” better than the thought of using a bedpan... though i probably should have opted for one now that i think of it.)

it’s difficult not to think about one’s humanity—mortality—when faced with an illness. i have much more compassion for those with illnesses and gratitude for those who make it their life’s work to find cures and treatments for them. i never understood the importance of donating blood until i had to have a transfusion... and another... and another. one of the most bittersweet decisions i’ve had to make is to not have children—i’d always assumed that i would have at least one. in a way, it is kind of a relief, because of the fucked up genetic legacy that i would be passing on if i did have a child. there will probably always be a hole in my heart because of it, but i’ve found some comfort in knowing that i won’t have the responsibility that comes with having children—financially, emotionally and physically. consequently, i’ve come to relish the idea of having an extended dog family... they’re kind of like kids but they don’t talk back. :)

it’s kind of funny... being on a pretty hefty dose of steroids has its door/window moments, too. not only do they suppress my immune system, but they make me sweat like nobody’s business (i often wonder why i shower before i go out). however, my skin is fabulously clear—no blemishes like i had in San Francisco. and even though the steroids have made me gain a ton of weight, i can, without any reaction, eat shellfish and berries again.

go figure.

getting the "therapy" out of chemotherapy

hey all.

i know it’s been a while since i last wrote (yes, i’m starting to sound like a broken record)... and usually i recap everyone with what new medical event has happened in the last month or so.

well, about two fridays ago, i had to spend the night in the hospital again. i received three units of blood, and then the next day almost received a chemotherapy drug called Rituxan. however, i was very apprehensive about taking it and decided not to receive it, even though my doctors were in agreement that it was the next necessary step in the treatment of my illnesses, namely lupus and autoimmune hemolytic anemia.

i’ve spent the last two weeks thinking, discussing, weighing and praying about this medication, and between my family and me, have decided that it’s for the best. though it is indicated for non-Hodgkin’s lymphoma or Rheumatoid Arthritis patients, its off-label indications include lupus and AHA. if i respond well to it (one of my doctors cited an unofficial 2/3 success rate), i should be receiving the infusions once a week for the next four weeks (or more). there are serious potential reactions to the medication (a rare one is death), so one can understand my hesitancy.

however, since my illnesses have been getting progressively worse, the treatments i am on don’t seem to be working and i seem to be transfusion-dependent (my blood transfusions have become monthly), Rituxan seems to be the best next step. there are other alternatives, but this one appears to have the most benefit. if for some reason this therapy doesn’t work out, the next possible step would be a splenectomy. but, i’ll cross that bridge when i get to it.

for now, i just put my faith in the knowledge of my doctors and the higher power that guides them. hopefully, the rewards will be worth the risks.

hello hello

hey y’all... it’s been a while. since the last time i wrote, much has happened. birthdays, holidays, sick days.

in may, i was hospitalized overnight and received five units of blood. my hemoglobin had dropped to a dangerous 4.9 and i stayed for observation. it’s amazing i was able to function—even drive—at such a low level. at the beginning of this month, i was hospitalized overnight again for low hemoglobin—this time only 7.1. i received three units and was let go. that time, i had just been getting over a nasty cold/virus which probably didn’t help my anemia. (i gave the cold to K and he is STILL getting over it.)

i’ve been receiving my Aranesp injections again, and on tuesday had my blood checked again. it’s holding steady at just under 10, so i’m guessing that it’s finally kicking in. my platelet count is up, and my other counts are as well. however, my white blood cell count is still very low, so i have to be really careful not to get acutely sick. the week before i came down with my cold, i went to several of my nephews’ events: a preschool graduation, gymnastics olympics day, and a birthday party at Fun Max Jump-In ... all breeding grounds for germs.

my rheumatologist says that my Lupus could be bringing my white counts down, so we’re looking into different meds to stabilize them. my own bone marrow is producing as it should, but once my blood cells get into my bloodstream, something eats them up. a long-term treatment (if not cure) is a bone marrow transplant. however, my hematologist says that it’s a last-ditch effort, so i won’t even consider it for now. fingers crossed.

in other news, Karen and John finalized the date of their wedding, 03.07.09. it will take place at Agave Road, which is perfect for the Texas-themed wedding they were hoping for, including a mariachi band and a barbecue buffet. stay tuned for more details.

K and i are still going strong... he works from home during the day while i either go to my appointments or get out of the house. sometimes, though, if i’m feeling bad i’ll sleep for most of the day and we’ll have dinner together. most nights, we watch CSI reruns on cable—we’re junkies. i just finished working on a small contract graphic design project, so now i’m thinking about other projects, like a Save The Date card for Karen and John.

so there’s my update... what’s up with everyone else??

long time no blog

hi everyone, it’s me again.

the past few months have been sort of busy for me, both health-wise and otherwise.

january through about mid-march, there was a weird situation in my family with a turned-out-to-be-crazy house guest... which caused much strife and stress with everyone (directly and indirectly) involved. for me, i needed to move out of my siblings’ house because the mental and physical stress was becoming too much to bear. and since K was moving to Texas, it was the perfect opportunity for me to branch out.

at the beginning of march, i was feeling extremely fatigued, and it turned out i needed a blood transfusion. luckily, i finally had insurance, and it was covered. K and i moved in together (scandalous, i know) on the ides of march (is that good or bad?) and slowly moved my stuff in. i had some furniture, but since K sold nearly everything he owned back in SF, he had to start over... we got a new 40" LCD tv, a dining set and we just got a new Honda Element (in Kiwi Green Metallic)—which we love love love, by the way.

april has been kind of a rough month... i had/have another infection in my right leg (same side as the one in september). the infection (gross alert:) turned out to be E. coli, and it was bad enough to require day surgery to have it incised and drained. however, since my blood levels were low (Hgn was 8.1), i spent two nights in the hospital so i could be transfused. since then, i have been seeing doctors just about every week, and have developed a “kissing lesion,” which is basically another infection on my other leg.

mid-april, my longtime pen-pal-turned-gal-pal, philippa, came to stay a few nights, which is always a welcome treat. we were able to catch up as if no time had elapsed and we hit the new outlet shops in Cypress... big surprise. i can’t believe our friendship has lasted 21 years!

last week, i had a rather unpleasant bone marrow biopsy done on my hipbone because my blood levels have been abnormal, especially my white blood counts. the preliminary results have been normal, so that’s promising. i won’t know for sure until all tests come back, though. fingers crossed.

and if that wasn’t enough, i had to see yet another doctor on monday (aka my birthday) for more swelling/inflammation in my private area. fun.

my birthday actually turned out great though. on sunday, my family threw me a fajita cookout and i had an ice cream cake. monday, my mom and i had lunch at Carino’s, and K took me out for a filet at Saltgrass. one of the best highlights of the day was finding out i was approved for disability benefits. since i’m not able to work or do school right now, the extra income is much needed and much appreciated. some days i sleep for 16 hours, and some days i feel fine. most days, though, i feel like i have the flu or some derivative of it. tasks like laundry and moving heavy objects can be real obstacles when i’m exhausted or in pain.

but i’m taking things one step at a time and trying to cope with everything as much as i can. i want to thank everyone for their kind thoughts and prayers... sometimes when my faith is weak, it is a comfort to know that others’ faiths are strong.

when it rains...

i never expected the path of my life to take this many turns and end up where i am right now.

it's hard not to dwell and worry about all the things that have come out of my illnesses, on top of all the other stresses in my life and family.

earlier this month, i found out that my student insurance, which supposedly covered my last hospitalization, my doctors' visits and lab work... will probably be null and voided because my internet coursework didn't count as being a full-time student.

so... along with my student loan debt, i am looking at more than $100,000 in medical bills, not a cent of which i can repay.

on top of that, my three conditions (lupus, thalassemia and depression) pretty much render me uninsurable. so, i am without insurance right now, and i've already missed one Aranesp injection and round of bloodwork. i have appointments coming up, and if i can't get major risk insurance before that, i'll have to pay for them out of pocket. luckily, i'm getting my CellCept for free, so i don't have to worry about that. all my other medications are generics, so i can get them cheap.

and if that weren't an insult to injury, i may be taking a leave of absence from school. i did horribly in both my classes last semester and if i have to get a job to maybe try to get insurance (with a non-exclusion clause for pre-existing conditions) and earn some money, i may either take one class this semester or delay until the fall.

for the past five days or so, i've had one long flare consisting of low-grade fevers as high as 100.3° F, extreme exhaustion, body aches and pain in my side bad enough that i could barely lift my leg to put on a pair of pants. i know it's been a direct result of all my stress and drama that's been going on in my family (it's too complicated to explain).

consequently, i'm in the process of filing for Social Security Disability—something i never thought i'd have to do at the age of 30. one of my dad's patients, who is actually an assistant to Congressman Ron Paul (aka a caseworker for SS), is helping me with the process. he said that once i've filed my application, he'll Congressionally flag it to expedite the process. for that, i'm really, really thankful. my appointment with my local SS office is on February 6th, so wish me luck.

i'm really trying hard to not be depressed about all of this since stress causes flares... but it's hard not to be. i cry often and hard, and try to make sense of why this has happened to me. maybe i'll never know why, but perhaps it's in the questioning that i'll do the most growing and learning.

but for right now, it's all just salt in the wound.

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.