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.
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.
posted by sightofstars | 11:01 PM
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