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.
Tuesday 25 September 2012
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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