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Chronicles of a Chronically Ill Mommy

Today I Cried

Today  I cried.  And I hate crying. I long viewed it as a symptom of weakness, and I was strong. I was a bad ass. I don't cry.

I was raised to be stronger, better, and work harder. It was instilled in me from an early age by my mother. She knew as a woman and a visible minority, the child of immigrants, I would need to push harder and exceed expectations  to find success in this world.

I learned to never let them see you sweat. Don't show weaknesses​ and work harder if you're unfortunate enough to have them.

Then the world as I knew it changed. Almost 20 years ago I was diagnosed with what will be a lifelong illness, and I didn't bat an eye. I only had a few symptoms, uveitis, mouth ulcers, and a few annoyances, but it didn't affect my life by and large.

One year later, I quit my dream of going to medical school. The medication for my trivial illness left me cornered like a wounded animal. The constant infections and painful side effects induced a form of depression in me. I half-heartedly finished the master’s thesis that was supposed to help me get accepted into medical school and turned away from that dream. How could I be a medical resident when I can't even leave my home without picking up a painful debilitating infection?  Instead I stayed in my condo with my new husband, licking my medication induced wounds. I cried then.

Then a light came into my life. The biologics were experimental back then, but they had few of the side effects of other medications. Although I still remained immunosuppressed, I was no longer debilitated. We bought a new home.  I had three babies. I went back to school for a great job in the medical field. And in this haze of a wonderful life, I could pretend I wasn’t still sick. Apart from my weekly injections and routine specialist​ visits, I was like everyone else. I was able.  I was strong.  Look at all those people running marathons in their 40s and 50s. That will be me when the kids allow me more time!

Today​ I went to the doctor. I almost cancelled the appointment because I was having a good day, but I went anyway to the avoid the cancellation fee. That's when she told me. The pain in my right hand that's been plaguing me, the pain in my foot, the clicky joints pinching my nerves, the steadily increasing incidence and severity of migraines, the tightness in my spine: my illness is no longer invisible to me. It will not be ignored. The medication is starting to fail me. The rheumatologist is changing my medication, but I can no longer deny that, in spite of my best efforts, time and my own immune system will be my enemies.  One day I will be one of the elderly patients with a walker or a wheelchair, struggling to roll over on the stretcher, instead of a vital 70 year old running with his grandchildren and swinging from the monkey bars, like my father.

So as the doctor spoke to me about how my illness is no longer a small nuisance affecting my eyes and joints, but also now affecting my muscles and tendons, and causing migraines, I felt tears starting to spike in my eyes. She suggested consulting a physical and occupational therapist in changing my home to be more joint friendly and changing how I work (as a sonographer, my job requires both hands, especially my right).  The goal, she explained, is to preserve my mobility as long as possible.  This stark assessment of my situation unveiled the truth that I had been hiding in the corner of my mind.  I won’t be running marathons. I won't be in my job into retirement age. I won’t even be opening jars or turning doorknobs.

And I cried because I finally realized the extent of my physical weaknesses.  Pretending they didn't exist and just "sucking it up" is no longer serving any good purpose.  There was no powering through this.  I have to start anew in managing my life in a way I had never truly believed I would have to.  

But I can do this.  Because I'm strong.

Yet another long absence....

When you have 3 kids, a chronic illness, and a job, things get a little crazy.  I always have a million thoughts swimming in my head that I should write down, but life gets in the way.  Today is Victoria Day, a much needed and beautiful long weekend for all of us.  However, it wasn't until Friday, that I realized it was a long weekend, because between work, the kids, and my husband's sudden finding of kidney stones, it's been a whirlwind of a month, to say the least. 

What is a Best Friend?

I'm writing this post because a friend of mine posed this question on her Facebook page.

This is what  I wrote as my response

"A best friend is someone you have when you're young and in school...the person you sit with at lunch and talk on the phone with after school to do a post mortem of the days' events. When you're young your best friend is like your other half...you get jealous when they hang out with other kids, you expect them to have your back no matter what. When you get older your best friend becomes your oldest friend who's more like family because they know the history of your life better than anyone else. But instead of a best friend, I think as adults we have a circle of close friends...each one shares a different aspect of ourselves. Like our Mommy friends that we discuss our children with, or our work friends that we discuss our jobs with, or our school friends that we reminisce with. Instead of only having one best friend, we have many. And when you're older you realize the value of good honest people much more and you start collecting them and your circle of friends keeps growing and growing."

But in reality, I really could have written a lot more about it, but I didn't want to flood her wall with my ramblings.   That's what a blog is for!

The friend who posed the question is my oldest friend.  I've known her since I was six years old and in that thirty years of friendship, we've had a bit of a rollercoaster ride (primarily in the adolescent years), but as our hormones settled down and came into our own, we've realized that we are like family.  I have two brothers and she is the closest thing I will ever have to a sister.  We've laughed together, cried together, cried because of each other, fought and fought, had periods of silence, and in the end, it was always ok, because we are like family. 

The funny thing, is that when I was a teenager, I did believe that you had to have a best friend, a kindred spirit who understood everything about you and would defend you not matter what etc etc.  I was an angry kid who didn't see a lot of good in the world, and having friends meant having people to commiserate with about how crappy things were, and who validated my view of things and told me what I wanted to hear.  Now that I'm all grown up, I don't need a best friend to validate me, or tell me what I'm doing is right or wrong.   I can do that for myself now.  

And the longer I'm alive, the more aware I am of how many amazing people there are in the world.  

Through friends, through school, and through work,  I meet amazing people every day. People who are forthright, honest, funny, open, caring and the list goes on and on.  I never imagined in my tormented childhood that I would have the good fortune to be friends with so many wonderful people.


So I fancy myself a collector, but of people. When I meet someone who I connect with, I add them to my collection.  I count myself lucky everyday to have the circle of friends that I do.   Instead of one best friend, I have many close friends  and even though we're all busy adults and can rarely see each other, I take every opportunity I can to keep in touch and let them know how awesome I think they are just for being themselves. 

The Butterfly Effect

We've all heard about the Butterfly Effect.  It's the theory that if you were to travel back in time and change some minute detail in the timeline,  it could change the whole world.  But consider this idea in terms of our present timeline.

Today I went for lunch with my younger brother and his girlfriend.  He asked me if I remembered the time that he sang The Little Drummer Boy when he was younger.  Honestly I had no idea what he was talking about.  He was the youngest of my three siblings with ten years separating him from my oldest brother and six years separating the two of us.

Apparently the question was asked because my brother explained to his girlfriend that the reason he never sings is because of the time he sang the Little Drummer Boy.  The story goes that he had his Walkman on (this detail totally dates the events) and he was singing along to the music.  He must have been really little, although he doesn't remember his exact age.  So, while he was singing the Little Drummer Boy, my older brother and I saw him and started laughing.  My guess is that we were laughing because it must have looked funny for a little boy to be sitting by himself singing the Little Drummer Boy and not because he sounded heinous, but this little incident that I don't even remember is the reason that for the rest of his life, my younger brother never sang.

It made me sad because as a child myself, how was I to know that would be so traumatizing?  What if that had not happened?  Maybe he would be on Broadway or singing in a rock band.  Maybe he has an awesome voice and could have been an opera star.  The world and I will never know.

I just find it so interesting how we can influence people in ways that we don't even realize.  By laughing, or not, by small words and gestures...I never really considered it because it seems so self-centered and vain, but we can really affect the people around us.

So I thought about how this may have happened for me and I remember what my older brother did for me and may not even know it.

When I was eleven and he was fourteen, he had a friend name James who was eighteen that had an uncle in our neighborhood.  James took an interest in me that I, as a naive child, didn't know was inappropriate.  He asked me to go with him to the local amusement park and I agreed.  I thought it was awesome to get to go somewhere without my parents and not have to pay for it.  So we went and he took me on some scary rides that I was too young for and cried. When we got back to my house, my older brother was angry.  He asked why I was back home so late and told me my mom would be really mad, and as my mother was a physically abusive psychopath, I was deathly afraid of what would happen. James still wanted to hang out with me after the park and tried to get me to ride around with him on his bike, but out of fear of my mother, I refused.  He was angry, but I didn't care because I didn't want the crap beaten out of me.

It wasn't until I was an adult that I realized what was happening.  James was a pedophile and he was trying to groom me.  I was eleven, and he was eighteen, but he wanted to take me on dates.  He made inappropriate comments about my body, but I didn't know what those words meant at the time, so it didn't make me uncomfortable.  He was using his friendship with my brother to get to me.  How much do a 14 year old and an 18 year old have in common anyway?  How could an 18 year old have an interest in an 11 year old girl?

But the small act of my brother saying that I was in trouble with my mom stopped whatever was happening and what could have happened if I kept hanging out with James.  It was a lie, of course.  My mom had no idea I went out with an 18 year old guy and cried on the Zipper, then refused to ride the handlebars of his bike.  I wonder if my brother even remembers what he did to protect me...I'm guessing he doesn't, but that is my butterfly story.  Because as tough as my life is, with my past of physical and emotional abuse, or my present of my chronic illness, the pain of being the victim of a pedophile is unimaginable.

It's crazy to think of the different paths our lives may have taken, but for one small butterfly.

Not so Merry Christmas

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.

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.