The thing about my purple hair

When you sit in a doctor’s office and are told that the vision loss you have been struggling with is not likely to be resolved, EVER and you realize, no, accept that you are going to have a disability that will greatly impact the rest of your life, you start to think.

My thoughts went to what I could no longer do. Im not gonna drive. Im no longer going to be able to work, at least in the capacity that I am passionate about.

And then my thoughts started to wander to ‘What If’. What if this gets worse. What if I lose my vision completely. What if I don’t get to see my kids grow up. What if I cannot watch my kids get married. What if I never get to see my grandchildren’s faces.

I started to spiral. I could feel the darkness setting in. I had to shut it off. I started to search for any positive, glimmering, golden, small strand of good in this pile of poo.

And then it came to me: What about all the things I couldn’t do when I had a job? The things I missed with the kids. Like at school. Field trips. Days off & winter/spring break.

Ok. This was helping. I was feeling a little better.

Then, as my Mom and I were walking to the car, I saw this girl with this perfectly, dip-dyed teal hair and I smiled. A good, deep down in your soul smile.

Working at a law firm, I could have never done something like that to my hair, although I had always envied and loved it. I decided to pick a fun color and go for it.

I went for purple. And I love it.

My girlfriend who is my hairdresser immediately announced: “Im not fixing that!!!” upon seeing it which annoyed me. I don’t want it fixed, theres nothing to fix.

My Mom asked me if I was having a mid-life crisis.

Ive gotten looks, rolled eyes …

For what?

Well guess what fuckers? You don’t know me or my story and your pretentious bullshit can suck it! (smile)

Purple hair, don’t care!

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Chemo

No matter how much you prepare and educate yourself, its just not enough when you actuality hear the recommendation for chemotherapy from a doctor.

I do not have cancer. I have a rare autoimmune retinopathy that is stealing my vision and in time will cause bilateral blindness. After months and months and a plethora of testing, bloodwork was sent to the one lab in the country that is able to detect antibodies that attck the eyes. I have them. This is a new area of medical science and detection so not a lot is known about causes or cures. The current “theory” is that you go through chemotherapy as immuno suppression, essentially to reboot. Like chemo for anything else, you commit to months or year plans and there is no guarantees. It would nor be rhe most heavy duty form of chemotherapy but it would be strong. I’ve been told that I need to weigh the cost v benefits of this.

My dark humor & sarcasm could spin off in hyper drive in defense of ‘what-ifs’ at this point. But the bottom line is that these options suck and frankly Id just like to raise my middle fingers in their general direction at this point and call it a night

Diagnosis

After almost 8 months of eye pain, vision loss and test after test that led us nowhere, I got an answer today and Im still not sure if it really is one or a definite answer. I still don’t know if can move forward with it or get proactive about it. I guess it’s an answer. A diagnosis, but the PROGNOSIS is questionable. I thought I would have more relief, but I just feel … numb.

I feel confused now thinking back on it. I have questions. Why didn’t I ask them?

The answer was central vision loss. That wold explain why my eye is missing details, i.e. can’t read small print, can’t focus, miss details in faces.

But what caused it? Is that why bloodwork is needed? Will the bloodwork only support the diagnosis or provide a prognosis as well? And what exactly should I be doing in the meantime? Is there anything that I can do? Should I be learning fucking braille? Why wasn’t it found by Batesy? (different neuro-opthamologist) Different equipment? Different test? Does it mean its gotten worse?

Im just fucking confused.

I need to make some phone calls.