Thursday, April 12, 2007

My Disability And Fertility

I had VanGoghGirl over a decade ago. My pregnancy went extremely well. However, a few months after her birth, I experienced a terrible flare-up of my Lupus. At that time, I wasn't diagnosed. In fact, it wasn't until that flare-up that the doctors were able to definitively diagnose me after spending an entire childhood filled with episodes of unexplained symptoms.

My white blood cell count stayed low for months. My hair, which had grown out quite nicely during my pregnancy, began to shed. I was too fatigued to do anything other than breastfeed my new baby and take care of personal hygiene basics. I got thrush (i.e. oral Candida infection). Then I developed ulcers in the back of my throat that just wouldn't heal. At first the doctors thought I had herpes but upon being tested they found that I didn't.

Anyway, I was eventually diagnosed with lupus. When I made twenty-one, my rheumatologist told me that the best birthday present I could give myself would be getting my tubes tied. I was upset but I understood why he said that. I couldn't be on birth control pills because the estrogen exacerbates lupus. Like many other lupies (the nickname for people with lupus), I have all sorts of weird allergies. I'm mildly allergic to latex, so this combination of conditions are what caused my doctor to urge me to ensure that I wouldn't get pregnant again.

Nevertheless, I refused to have the recommended procedure. I loved being a mom and I wanted VanGoghGirl to have a sibling, eventually. I did want to be responsible about it though so I just did the best with the situation I had. Around 1999, I had another big flare-up and had to take methotrexate (a chemotherapeutic drug) for a few months. I wasn't told that this drug can greatly increase the risk of miscarriages even after you've stopped taking it. I found out the hard way.

Okay, so then came the cancer and all of the treatments for that. I've had pieces of my ribs cut out. I've had my sternum cracked open so the doctors could access my tumor. I've had them dig into my spine in order to get as much of the tumor out as possible. As a result, the doctors are not sure that my spine could provide enough structural support for a pregnancy. At any rate, they have all agreed that, based on my condition now, I should give my body at least another year before I attempt to do anything major with it.

This issue has caused a rift between me and The German. I think he's traumatized by all he's seen me go through. It's understandable. It's enough to give anyone a permanent case of PTSD (post traumatic stress syndrome).

When I was getting radiation, The German was the one who had to put the Aquaphor (side note: This is hands down the best product for dry, cracking irradiated skin. It's so good that my cancer center supplied jars of it to us free of charge just to make sure that everyone had it even if they couldn't afford to get it from the store.) on my back despite the fact that I moaned with pain every time he touched me. And afterwards he's the one who peeled the blackened, fried skin off of my back. The skin was coming off in layers and parts of it would still be attached to my flesh. If he didn't take a pair of fingernail clippers and snip off the dead pieces that were already lifted, then when I wore a shirt, the dead skin that stuck out would snag and pull/rip the the parts that were still a part of my flesh. It took many months for the last layers of dead skin to detach.

When they sent me home after my first surgery with two holes in my side where the tubes had been, they covered it with clear tape and gave me instructions to take it off in a week and a half. When the time came to do it, I didn't have enough strength in my arms to do it. The German saw me trying and offered to do it for me. Because the tape had held everything in, when he pulled the tape off, a week and a half's worth of blood and pus oozed out. I sobbed when I saw it coming from my body. I felt so humiliated and embarrassed because I had to get someone to do such a disgusting task for me. When I looked at The German, he was obviously trying his very best to keep his composure but I could tell that he was holding his breath and trying not to throw up. Who can blame him? I felt even worse when he became embarrassed because I had seen the expression on his face.

He has tried to be a true stoic throughout my entire cancer journey. After my second surgery, I had a big square container hooked up to my tubes to measure how much fluid was draining from my chest each day. Honestly, it was worse than having to walk around with a full bedpan for four days. Oh and while we're on the subject of bedpans, when I was in the hospital, I had a morphine drip. You may or may not know this but, morphine suppresses the urge to have bowel movements. They can't let you out of the hospital without seeing that your bowels are working as they should.

After five days of being in the hospital, I still hadn't had a, you know, #2. So a nurse gave me a dose of milk of magnesia which took effect rather quickly. The German stayed in the room and stood right next to me when I sat in the commode and proceeded to make the biggest, most god-awful diarrheic evacuation you could ever imagine. The German didn't even blink an eye. Having been raised a true southern girl, I was horrified to have him witness this but he was as gentlemanly as any man could be. He helped me back into my bed and was just about to go and empty it into the bathroom attached to my room when a nurse passing by came in and did it instead.

I know that non-disabled people (and perhaps some people with disabilities too) might be really grossed out by all of the details in this post but I really this is my life and I want to portray it as realistically as possible. It would be unfair to The German if I just said that he's not very enthusiastic about the idea of me getting pregnant. His reasons are valid. We've already had to go through so much more than the average couple our age. He is really afraid that trying to carry a baby would kill me. I wish I could say for sure that it wouldn't/won't.


nuh ibn zbigniew gondek said...

As salaam alaikum.

Just surfing through sister. I am a Canadian Muslim writer. Come by insha'Allah if you have some time to read.

Ma'as salaama,

nuh ibn

Anonymous said...

for what it's worth coming from a guy like me with a background as such, but:

don't. be. ashamed. ever.

shame might be a concept worthwile in a few cases, but i reckon definitely not here.

it's not your fault. those to squeamish are not forced to read anyway, but imho you're writing about it all very politely and NOT grossishly or graphically at all. you're just trying to be honest, which always is a very good and decent thing at least in my book.

all the best, and just to say it again:

don't. be. ashamed. ever.

at least not by something like these things, ok?