Two weeks ago I had a miscarriage....again. It will be the latest in a series of them. In August I actually went back on the pill because it was emotionally and physically draining the life out of me.
In August is when I began telling myself the wonderful things about having only two children.
- My four year old is almost done with daycare so we'll have an extra 1160 dollars a month to go on a vacation or go shopping with.
- Vacation packages are built for families of four.
- I'll have more time to spend with the kids I have and more time for myself if I want it.
- We can stay in our current home for many more years instead of having to move right away.
- No more diapers or sleepless nights
- It would be hard to afford going on maternity leave with the reduced income, but more mouths to feed.
But in November, a funny thing happened. A friend at work told me she wanted to try for a third baby, and instead of feeling excited for her, I felt something knot up deep inside me. I was sad. Because I wanted another baby too, but after a few miscarriages, I felt like it physically just wasn't going to happen for me again. Maybe my Behcet's had progressed. Maybe the inflammation created too much scar tissue after the 2nd caesarean section. Something just isn't right with the plumbing these days.
But because of that feeling in the pit of my stomach, I stopped taking the pill again. Just one last kick at the can. And I got pregnant. I felt it in my bones...or more specifically my breasts, and the nausea. So I took a test and it was early but faintly positive. But I was getting more nauseous and more hopeful this time. I don't know why, but I thought this one would stick. And I was convinced it was a girl.
So I began telling myself why it was good to have another baby and specifically a girl.
- It will be a new experience with a girl.
- The boys will have someone else to love.
- I love babies
- It's not the same being the mother of the groom or paternal grandmother. There's something special about being the mother of a bride, or the mother of a child's mother. There's a relationship there that is different than with sons.
And then it happened again. I started bleeding when I was in the storage room digging out Owen's old clothes for Hayden to wear. So I went and cleaned up and went downstairs to tell my husband.
Then I cried. He held me for a long time until I stopped. It was the first time I cried over a miscarriage and I've been trying to figure out why this one was different. Maybe because I felt like this was the "one" that would go all the way. Maybe I felt stupid for even thinking that after how many miscarriages I've already had. Maybe because this meant that I would really NEVER have another child. Maybe because the one last thing that worked properly despite my illness now wasn't working. Maybe because now I had to choose whether or not to have medical intervention which would test how much I wanted another baby, and how far I was willing to go to get one. Probably all of the above.
So what do I do now? I still don't know. I want another baby, but I don't want to compromise my other children in any way. I don't want to use up time and money and resources getting another baby that could be used on them. And I don't want them to feel like they are not enough to complete the family. But I think that another person to love is important. And for my entire life I've always known that I would have three children. And when I see a friend with a baby or talking about having another baby, I feel empty inside.
So what do I do now. I still don't know.
Sunday 30 December 2012
I guess I was a wallflower in high school
I just finished reading "The Perks of Being a Wallflower" and it really brought me back to my days as a tortured adolescent. I identified a lot with Charlie, the brilliant and emotional wallflower, who loved reading and music. And I also write the way I talk.
In high school, I was really angry with everything. I hated my abusive, overly-critical mother. I hated my high school with its ethnic divisions. I hated my teachers who talked about my unused potential. I hated my teachers who didn't recognize my potential. I alternately loved and hated my best friend.
I spent a lot of time listening to sad music and crying in my room. I cut myself. I looked at bottles of pain killers like they were a way out. I wrote songs and poetry. I smoked and drank whatever I could find. It sounds so pathetic, and it was, but I was lost...struggling to find meaning to my life and thinking that happiness would never come to me.
In the book, Charlie's teacher tells him to read a book like a "filter" and not a "sponge." And I think that's how we should be in life, not just with books. As a child and a teenager, I was a sponge. I absorbed every negative thing every said or done to me. As a child my mother physically abused me. As a teenager she verbally abused me. I wallowed in my misery, and turned it over it my head listening to Tori Amos, Suzanne Vega, and other artists with gut-wrenching, tear-draining music.
I was reckless with my life, not because I felt invincible, but because I didn't care. Because I thought nobody cared. I skipped school, shoplifted, smoked, drank...and it's only by the grace of God that I never became addicted to drugs or pregnant. I even went through a brief anorexic period, but only because I couldn't stomach bulimia.
I thought I was in love with a few boys, but always unrequited because nobody wanted to be the white guy with the Asian girl and nobody wanted to be with a girl who was smart. And it wasn't until the last year of high school that I realized those boys actually might have returned my feelings, but didn't have the balls to make a move because social pressures were just too overwhelming. Not until one got drunk and pulled me into his lap to snuggle at the after-grad party. Not until one came over and made out with me after we graduated high school.
And it wasn't until university that I actually began to "participate" in life. I met my now husband and he was so different from me. He wasn't a miserable adolescent. He had a great high school experience and went to university with a purpose. He worked hard for himself and not out of parental expectations.
And looking at his life, I realized that I was not a victim, but playing one. I was torturing myself trying to punish my mother, but I was ruining my own chances at a great life in doing so. And I started to be a filter instead of a sponge. Just because someone says something bad about me, doesn't make it so. And I did have a lot of potential that I wasn't using.
So my life really started at 18. I no longer torture myself with sad music, although I still appreciate a great tune. I still love a good book. I still believe that what people do and say to me is more a product of who they are than who I am. I'm successful in my career. I found love in my husband and our children. And even with all of my challenges, I'm happy. It's a choice...and I'll continue to make it.
In high school, I was really angry with everything. I hated my abusive, overly-critical mother. I hated my high school with its ethnic divisions. I hated my teachers who talked about my unused potential. I hated my teachers who didn't recognize my potential. I alternately loved and hated my best friend.
I spent a lot of time listening to sad music and crying in my room. I cut myself. I looked at bottles of pain killers like they were a way out. I wrote songs and poetry. I smoked and drank whatever I could find. It sounds so pathetic, and it was, but I was lost...struggling to find meaning to my life and thinking that happiness would never come to me.
In the book, Charlie's teacher tells him to read a book like a "filter" and not a "sponge." And I think that's how we should be in life, not just with books. As a child and a teenager, I was a sponge. I absorbed every negative thing every said or done to me. As a child my mother physically abused me. As a teenager she verbally abused me. I wallowed in my misery, and turned it over it my head listening to Tori Amos, Suzanne Vega, and other artists with gut-wrenching, tear-draining music.
I was reckless with my life, not because I felt invincible, but because I didn't care. Because I thought nobody cared. I skipped school, shoplifted, smoked, drank...and it's only by the grace of God that I never became addicted to drugs or pregnant. I even went through a brief anorexic period, but only because I couldn't stomach bulimia.
I thought I was in love with a few boys, but always unrequited because nobody wanted to be the white guy with the Asian girl and nobody wanted to be with a girl who was smart. And it wasn't until the last year of high school that I realized those boys actually might have returned my feelings, but didn't have the balls to make a move because social pressures were just too overwhelming. Not until one got drunk and pulled me into his lap to snuggle at the after-grad party. Not until one came over and made out with me after we graduated high school.
And it wasn't until university that I actually began to "participate" in life. I met my now husband and he was so different from me. He wasn't a miserable adolescent. He had a great high school experience and went to university with a purpose. He worked hard for himself and not out of parental expectations.
And looking at his life, I realized that I was not a victim, but playing one. I was torturing myself trying to punish my mother, but I was ruining my own chances at a great life in doing so. And I started to be a filter instead of a sponge. Just because someone says something bad about me, doesn't make it so. And I did have a lot of potential that I wasn't using.
So my life really started at 18. I no longer torture myself with sad music, although I still appreciate a great tune. I still love a good book. I still believe that what people do and say to me is more a product of who they are than who I am. I'm successful in my career. I found love in my husband and our children. And even with all of my challenges, I'm happy. It's a choice...and I'll continue to make it.
Friday 14 December 2012
Life in Pictures
Years ago when I was a photographer, I was mildly obsessed with capturing the perfect image. I loved photographs because no matter what else was happening around you, if you captured one perfect still image, it gave the illusion that life at the time was also perfect.
For my wedding I gave much more time to the photographer than the videographer. I wanted to be able to look back and think of the wedding day as perfection (which it wasn't) and I didn't want to have all the ugly moments played back again on video.
Now as a mother, I've been converted. While I love to take photos of my children, I also need to capture their life on video: to hear their voices and watch their faces change expression. I want to hear their squeals of laughter and see them singing and dancing. These days are fleeting and I'll never get them back.
I've also realized that my focus on photography was also about freezing time. And in a lot of ways I was so involved in freezing moments that I forgot to experience them...or else I had the limited experience of being behind the camera. Maybe because of my childhood, I was also afraid that the beauty of my life would soon fade, so better catch the good times now...they'll be gone soon.
But as my life evolves and my children grow, I'm learning that happiness isn't going to fade and crumble like a stale cookie. Happiness starts within us, and if I choose, I can live in this state until the end of my life.
So I've started to focus more on experiencing my children and my life wholly. I spend less time behind the camera and more time laughing with my boys, giving them hugs and kisses. I obsess less with getting the perfect image and obsess more with making their lives full of love and happiness. And while I still take pictures and videos if they are in a show or doing something exceptionally cute...I make sure to peek out from behind the camera, to catch the action in full real life view.
For my wedding I gave much more time to the photographer than the videographer. I wanted to be able to look back and think of the wedding day as perfection (which it wasn't) and I didn't want to have all the ugly moments played back again on video.
Now as a mother, I've been converted. While I love to take photos of my children, I also need to capture their life on video: to hear their voices and watch their faces change expression. I want to hear their squeals of laughter and see them singing and dancing. These days are fleeting and I'll never get them back.
I've also realized that my focus on photography was also about freezing time. And in a lot of ways I was so involved in freezing moments that I forgot to experience them...or else I had the limited experience of being behind the camera. Maybe because of my childhood, I was also afraid that the beauty of my life would soon fade, so better catch the good times now...they'll be gone soon.
But as my life evolves and my children grow, I'm learning that happiness isn't going to fade and crumble like a stale cookie. Happiness starts within us, and if I choose, I can live in this state until the end of my life.
So I've started to focus more on experiencing my children and my life wholly. I spend less time behind the camera and more time laughing with my boys, giving them hugs and kisses. I obsess less with getting the perfect image and obsess more with making their lives full of love and happiness. And while I still take pictures and videos if they are in a show or doing something exceptionally cute...I make sure to peek out from behind the camera, to catch the action in full real life view.
Another shooting tragedy in Connecticut
What is there to say about yet another massacre of innocent life?
The frequency of mass shootings seems to be increasing. Newtown is the latest in a string of tragedies, after the Oregon mall shooting, the Colorado Batman shooting etc etc. But this shooting digs deep because of all the children who lost their lives. We are stunned, speechless, and mourning.
So it leaves me and the rest of the world wondering...why?
There are no easy answers and lobbyists for and against gun control will try to leverage their position using tragedies such as this.
Calls for gun control inevitable arise after these crimes. Fewer guns means fewer shootings. The math seems easy. Gun advocates will say that fewer guns means fewer citizens with the ability to defend themselves. The math seems easy.
But life isn't so black and white. The math is more complex than we can imagine. We can make guns less accessible, but would that prevent a determined individual from acquiring these weapons? There is a black market for everything, so if assault weapons were to become unavailable or less available, that doesn't preclude the possibility of a mass shooting from happening. Most of the people that are involved in these crimes have no criminal records, so even if background checks were required to attain a gun, they would probably pass these with flying colors. The perpetrators of the Columbine tragedy were high school students, yet they found a way to amass an arsenal.
The determined mind can make things happen with careful planning. Like the cliche says, "Where there's a will, there's a way."
Not that I am in any way a gun advocate, but realistically the best we can hope for with gun control is to limit the physical damage and number of deaths these maniacs can cause.
So what about looking at the root cause?
Who becomes a killer and why? What are the signs? How can we prevent this from happening again?
Maybe the answer starts at home, with ourselves and our children. Pay attention. Watch for signs. Make sure our kids have empathy and compassion for others. Make sure we demonstrate it to them and be good examples. And if in spite of our best efforts, there is a problem...sort it out. See a doctor, have an assessment done. We need to remove some of the stigma of mental illness and make people more likely to seek help.
But even that math isn't easy. Because life isn't black and white. There will always be criminals who slip through the cracks.
Because there are no easy answers.
So every night, hold your children close. Tell them you love them. Care for yourself and others. Do something you are proud of every day. Let the little things go. Live each day like your last. Even though mathematically our families are safer than they have ever been, the math isn't always in our favor.
Update: Here is a link to an article about another mother struggling to find answers for her child.. This is exactly what I'm talking about. Even if we know there is a problem, are there enough avenues to help these children?
http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html
The frequency of mass shootings seems to be increasing. Newtown is the latest in a string of tragedies, after the Oregon mall shooting, the Colorado Batman shooting etc etc. But this shooting digs deep because of all the children who lost their lives. We are stunned, speechless, and mourning.
So it leaves me and the rest of the world wondering...why?
There are no easy answers and lobbyists for and against gun control will try to leverage their position using tragedies such as this.
Calls for gun control inevitable arise after these crimes. Fewer guns means fewer shootings. The math seems easy. Gun advocates will say that fewer guns means fewer citizens with the ability to defend themselves. The math seems easy.
But life isn't so black and white. The math is more complex than we can imagine. We can make guns less accessible, but would that prevent a determined individual from acquiring these weapons? There is a black market for everything, so if assault weapons were to become unavailable or less available, that doesn't preclude the possibility of a mass shooting from happening. Most of the people that are involved in these crimes have no criminal records, so even if background checks were required to attain a gun, they would probably pass these with flying colors. The perpetrators of the Columbine tragedy were high school students, yet they found a way to amass an arsenal.
The determined mind can make things happen with careful planning. Like the cliche says, "Where there's a will, there's a way."
Not that I am in any way a gun advocate, but realistically the best we can hope for with gun control is to limit the physical damage and number of deaths these maniacs can cause.
So what about looking at the root cause?
Who becomes a killer and why? What are the signs? How can we prevent this from happening again?
Maybe the answer starts at home, with ourselves and our children. Pay attention. Watch for signs. Make sure our kids have empathy and compassion for others. Make sure we demonstrate it to them and be good examples. And if in spite of our best efforts, there is a problem...sort it out. See a doctor, have an assessment done. We need to remove some of the stigma of mental illness and make people more likely to seek help.
But even that math isn't easy. Because life isn't black and white. There will always be criminals who slip through the cracks.
Because there are no easy answers.
So every night, hold your children close. Tell them you love them. Care for yourself and others. Do something you are proud of every day. Let the little things go. Live each day like your last. Even though mathematically our families are safer than they have ever been, the math isn't always in our favor.
Update: Here is a link to an article about another mother struggling to find answers for her child.. This is exactly what I'm talking about. Even if we know there is a problem, are there enough avenues to help these children?
http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html
Tuesday 25 September 2012
Walking in a Winter Wonderland...not really
Have you ever walked through a heavy snowfall and everything was kind of bright but your vision was impaired? That's how everything is to me right now.
Last Thursday when I woke up, I felt as though a film was covering my eyes. I couldn't really see clearly, but I thought maybe I had some sleepy stuff in my eyes. I rubbed them a few times, but alas, the fog did not clear. It seems to have gotten worse over the weekend, and though I called my ophthalmologist on Friday, I still haven't heard back.
It's a struggle just to type this, squinting at each letter to ensure no typos or grammatical errors. When I was out shopping earlier, I struggled to swipe my card and enter my pin number. When I spied a bag of hot dog buns for a moment I thought they were tiny hamburger buns for sliders, until I got close enough to touch the bag. I could barely read the ingredient list on snacks for my son to make sure there were no nuts in them. And because sensitivity to light accompanies the inflammation, on this overcast day I was squinting and wearing sunglasses.
Although this is a pretty sudden and severe flare of my uveitis, it's also par for the course being chronically ill. Every day brings a new symptom, a new infection, or fleeting moments of feeling "normal." I was finally recovering from a long, drawn-out cough, close enough to taste the sensation of healthy, when this decline in vision happened, and now almost four days after that, I'm feeling the beginnings of a new cold.
Having this illness is an exercise in alternating hope and frustration, depression and happiness. It's finding a balance between my mental energy and physical limits.
I have to be prepared at all times for these eventualities and have plans, and contingency plans etc etc so that I can minimize the impact of my illness, not only on myself, but everyone around me.
So while I'm busy worrying about my vision and hoping that, while I wait for the doctor's office to call, no permanent damage will be done to my sight, I'm also worrying about my family and my job. I know that my limitations with inevitably affect those that depend on me, and it's stress upon stress that weighs heavily on me, robs my sleep, and exhausts my resolve.
After I finish writing this, I'm going to play with my younger son, try to finish up chores around the house, and then go to work at a medical clinic, to care for others.
The entire time, I will be struggling to see things clearly, literally and figuratively.
For some insight into chronic illness, you can read the Spoon Theory written by a woman with lupus.
Last Thursday when I woke up, I felt as though a film was covering my eyes. I couldn't really see clearly, but I thought maybe I had some sleepy stuff in my eyes. I rubbed them a few times, but alas, the fog did not clear. It seems to have gotten worse over the weekend, and though I called my ophthalmologist on Friday, I still haven't heard back.
It's a struggle just to type this, squinting at each letter to ensure no typos or grammatical errors. When I was out shopping earlier, I struggled to swipe my card and enter my pin number. When I spied a bag of hot dog buns for a moment I thought they were tiny hamburger buns for sliders, until I got close enough to touch the bag. I could barely read the ingredient list on snacks for my son to make sure there were no nuts in them. And because sensitivity to light accompanies the inflammation, on this overcast day I was squinting and wearing sunglasses.
Although this is a pretty sudden and severe flare of my uveitis, it's also par for the course being chronically ill. Every day brings a new symptom, a new infection, or fleeting moments of feeling "normal." I was finally recovering from a long, drawn-out cough, close enough to taste the sensation of healthy, when this decline in vision happened, and now almost four days after that, I'm feeling the beginnings of a new cold.
Having this illness is an exercise in alternating hope and frustration, depression and happiness. It's finding a balance between my mental energy and physical limits.
I have to be prepared at all times for these eventualities and have plans, and contingency plans etc etc so that I can minimize the impact of my illness, not only on myself, but everyone around me.
So while I'm busy worrying about my vision and hoping that, while I wait for the doctor's office to call, no permanent damage will be done to my sight, I'm also worrying about my family and my job. I know that my limitations with inevitably affect those that depend on me, and it's stress upon stress that weighs heavily on me, robs my sleep, and exhausts my resolve.
After I finish writing this, I'm going to play with my younger son, try to finish up chores around the house, and then go to work at a medical clinic, to care for others.
The entire time, I will be struggling to see things clearly, literally and figuratively.
For some insight into chronic illness, you can read the Spoon Theory written by a woman with lupus.
Thursday 13 September 2012
Yay for Days off!
I have a day off from work today, and while for most people it would be an opportunity to catch up on cleaning or errands, for me I have to make it a day of rest.
My personality being what it is, I somewhat define myself by what I am able to accomplish, even little things that most people take for granted. So days like these are mentally difficult because as I look at my to-do list, I have to force myself to relax and do nothing. What's even harder is to not feel guilty about it.
Why do I need to do nothing?
I'm sick. I've been sick all summer, struggling with everything from stomach flu (which made our trip to Disneyland great!) to respiratory viruses. Currently I've been coughing for a good month. And while I'm usually in good spirits about these things, I'm worn down to a nub physically and emotionally.
Why all these infections? Because of my Behcet's syndrome I have to take immunosuppressive medication and currently I'm using Remicade. The Remicade is great because I get the immunosuppresion without the lovely gut wrenching side effects of Cyclosporine, but I still get recurring infections that are difficult to recover from. Add to that mix a job in healthcare working with lots of people, two children carrying germs from their two different schools, and a husband who works in a hospital. I'm exposed to a lot of crap.
But life being what it is, I try to minimize the effects of my illness on my work. That is, unless I seriously can't get out of bed, as long as I can walk, I'm coming to work. Sorry. I am. I've had enough flak about sick time to last me ten lifetimes, even with my best efforts, so ready or not here I come...to work...with a cold.
So the reason why I need to force myself to do nothing on my days off is simple. I need to heal. Because every day that I have to force myself to get out of bed sick with a virus or a flare is a day that I am ignoring my health and my body and essentially sacrificing myself to help out at work, to help my family, and to do the things that everyone else sees as everyday life.
So I'm sorry that I'm not coming to the baby shower tonight. I'm sorry that I didn't dust or go shopping or make dinner.
I'm healing. But if it makes you feel better, I feel horribly guilty and useless.
My personality being what it is, I somewhat define myself by what I am able to accomplish, even little things that most people take for granted. So days like these are mentally difficult because as I look at my to-do list, I have to force myself to relax and do nothing. What's even harder is to not feel guilty about it.
Why do I need to do nothing?
I'm sick. I've been sick all summer, struggling with everything from stomach flu (which made our trip to Disneyland great!) to respiratory viruses. Currently I've been coughing for a good month. And while I'm usually in good spirits about these things, I'm worn down to a nub physically and emotionally.
Why all these infections? Because of my Behcet's syndrome I have to take immunosuppressive medication and currently I'm using Remicade. The Remicade is great because I get the immunosuppresion without the lovely gut wrenching side effects of Cyclosporine, but I still get recurring infections that are difficult to recover from. Add to that mix a job in healthcare working with lots of people, two children carrying germs from their two different schools, and a husband who works in a hospital. I'm exposed to a lot of crap.
But life being what it is, I try to minimize the effects of my illness on my work. That is, unless I seriously can't get out of bed, as long as I can walk, I'm coming to work. Sorry. I am. I've had enough flak about sick time to last me ten lifetimes, even with my best efforts, so ready or not here I come...to work...with a cold.
So the reason why I need to force myself to do nothing on my days off is simple. I need to heal. Because every day that I have to force myself to get out of bed sick with a virus or a flare is a day that I am ignoring my health and my body and essentially sacrificing myself to help out at work, to help my family, and to do the things that everyone else sees as everyday life.
So I'm sorry that I'm not coming to the baby shower tonight. I'm sorry that I didn't dust or go shopping or make dinner.
I'm healing. But if it makes you feel better, I feel horribly guilty and useless.
How the Chaos Began
Just before the New Year of 1997, when I was 20 years old, I woke up in my little twin wooden platform bed from which I had removed the old saggy mattress and was surrounded by white.
Blindness wasn't what I thought it would be...I had always envisioned a black, sightless world, and this was very different. I couldn't make out any shapes or colors around me and the only sense of anything that I was receiving was a blinding white light. In seconds a panic began to envelope me as I felt around for my teal and pink Swatch phone that had provided me with thousands of hours of service throughout highschool and by touch I dialed my boyfriend's number.
"Put some cold water on your eyes," he said.
The advice was almost laughable, but with no ideas of my own, I did as he suggested and slowly my sight returned. And the incident didn't recur that day, or the next, until it was time to go back to school.
That year the snow was deep and I gazed around the campus in wonder at the beautiful drifts of snow that blanketed the world around me...so similar to the white that surrounded me only days earlier in my bedroom. Blinding.
The doctor at the Student Health Center gave me some eyedrops and referred me to my first ophthamologist, Dr. Chew, who diagnosed me with anterior uveitis in my left eye. It must have began months earlier for the inflammation to be so bad. In hindsight, I did have problems with blurred vision and red eyes but I dismissed everything because my final exams and MCAT were more important.
So I went on my way with a prescription of prednisolone eye drops, and when that didn't work after a few weeks I progressed to taking prednisone orally and when that didn't work I got a steroid injection directly into my eye (and yes it was as bad as it sounds). When that didn't work I found myself referred to a neuro-ophthamologist who specialized in uveitis who then referred me to a rheumatologist and when all was said and done I still didn't have a solid diagnosis of what's wrong with me.
I do, however, have a "working" diagnosis of Behcet's syndrome, which basically means that although they aren't sure, my symptoms are closest to Behcet's and so they'll treat me as such because even if I had another type of autoimmune condition, the treatment would be the same.
That journey from waking up blind to getting a "working" diagnosis took at least 3 years, and since the diagnosis I have been struggling not just with my eyes but a myriad of other problems, and many include the side effects of the medications I had been using.
In the 15 years since I woke up blind I
Blindness wasn't what I thought it would be...I had always envisioned a black, sightless world, and this was very different. I couldn't make out any shapes or colors around me and the only sense of anything that I was receiving was a blinding white light. In seconds a panic began to envelope me as I felt around for my teal and pink Swatch phone that had provided me with thousands of hours of service throughout highschool and by touch I dialed my boyfriend's number.
"Put some cold water on your eyes," he said.
The advice was almost laughable, but with no ideas of my own, I did as he suggested and slowly my sight returned. And the incident didn't recur that day, or the next, until it was time to go back to school.
That year the snow was deep and I gazed around the campus in wonder at the beautiful drifts of snow that blanketed the world around me...so similar to the white that surrounded me only days earlier in my bedroom. Blinding.
The doctor at the Student Health Center gave me some eyedrops and referred me to my first ophthamologist, Dr. Chew, who diagnosed me with anterior uveitis in my left eye. It must have began months earlier for the inflammation to be so bad. In hindsight, I did have problems with blurred vision and red eyes but I dismissed everything because my final exams and MCAT were more important.
So I went on my way with a prescription of prednisolone eye drops, and when that didn't work after a few weeks I progressed to taking prednisone orally and when that didn't work I got a steroid injection directly into my eye (and yes it was as bad as it sounds). When that didn't work I found myself referred to a neuro-ophthamologist who specialized in uveitis who then referred me to a rheumatologist and when all was said and done I still didn't have a solid diagnosis of what's wrong with me.
I do, however, have a "working" diagnosis of Behcet's syndrome, which basically means that although they aren't sure, my symptoms are closest to Behcet's and so they'll treat me as such because even if I had another type of autoimmune condition, the treatment would be the same.
That journey from waking up blind to getting a "working" diagnosis took at least 3 years, and since the diagnosis I have been struggling not just with my eyes but a myriad of other problems, and many include the side effects of the medications I had been using.
In the 15 years since I woke up blind I
- got my B.Sc. with first class standing
- finished my M.Sc. with a full graduate fellowship and a small scholarship I was granted for my writing ability
- gave up on my dream to go to medical school because of the recurring infections from my treatment and my depression over my illness
- started a photography business in a direct affront to my science-based dreams that I had to give up
- got married
- had cataract surgery on my left eye, as a result of both the uveitis and steroid treatment
- had my first child. That pregnancy put me into remission until Owen was one year old
- started teaching music classes for babies in addition to my photography business
- went back to school for sonography which helped me rediscover my love of medicine. I graduated at the top of my class and gave up both businesses for the stability of a health care job
- had my second child. This pregnancy was a struggle that had me in the hospital at 13 weeks and at 30 weeks until I delivered at 38 weeks, and subsequently had a flare immediately after having Hayden
- had cataract surgery on my right eye
- quit my job at the clinic I was working at for five years over discrimination towards my illness
- have a new awesome job with shorter hours, better benefits, and higher pay
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