Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Friday, February 27, 2009

Updates, Updates Part 4


Life seems to have change 180 degrees since I last posted in this series of updates. I am still saving myself for last. This one will be on my sister.

Background? Okay.

My sister is 10 years younger than me. She used to be the "popular" one. You can tell I am an introvert and she was an extrovert, because when we were younger, people would say, "I didn't know you had an older sister."

I didn't go out much, loved to stay home, read and draw. She was the opposite. Ballet lessons, movies with friends, playdates, sleepovers. You name it, if it was an event, she was there and probably knew half of the people.

She was always battling with her weight. With diabetes heavy in my family, battling weight is not a good thing. I do, too, but her battle outstripped mine. But something else bothered me, but I could never put my finger on it.

I won't go into the hard years, even though I know they shaped who she is. Those skeletons can rattle, but I'm not touching them. Suffice it to say, by the time, she reached Baltimore with me in 2004, she was over 300 lbs, sick and barely working.

I won't pretend I know all of what is going on. For years, I begged parents and then my brother (who received guardianship over her once my parents were too ill to care for her) that someone have her tested. For anything. Something was wrong. She could barely hold down a job, only lived on her own once for a year and didn't have a car.

Did anyone listen? Of course, not. Judi is that flaky, weird, out there sibling who talks too much, thinks she knows everything and is always trying to get someone looked at.

In 2004, she came to Baltimore, having worn out my brother. She was nearly 30. I hit the ground running with her. Here are some doctors. Here is where to get a job or job training. You can stay with me until you get on your feet. Get to know a circle of friends who will be there for you. Get to know Baltimore.

Two years later, she was still with me, working part-time and had seen not ONE doctor.

I hit the roof. I was about to remarry, give up my little townhome and she had no where to go. This is painful to write, but my sister ended up in the system of homelessness for nearly nine months. I can barely write about that either. A sore spot for only God and I.

We had one good talk before she left in which I told her an old line from old folks who knew better. "God didn't make junk. You are worth something, even if you don't think you are. And, he didn't put you in this family to fail." She cried and it was then, I realized, my sister suffered from depression. Not the light dysthimic type, but full-blown clinical depression.

I again suggested help. And, let her go through that horrible process of homelessness.

It actually helped. She emerged more focused, healthier and motivated. She got a job as a live-in companion for developmentally disabled adults. She bought a car and started taking care of herself. So, I thought.

I noticed her falling asleep everywhere. I mean, sitting up, falling asleep. I pleaded. Get tested. This was after my young son's diagnosis of sleep apnea, and I was on high alert. So, she actually went. Yep, sleep apnea. She had over 40 apneas that night and stopped breathing for nearly 40 seconds. (!!!!) They put her on a CPAP machine and asked her to lose weight. It helped at first, with me insisting on strict usage. She became more alert and could focus better. But, that was not to be the end of her health trials.

July of 2008. I will never forget the month. Trying to get my family into some "culture," I took us all to the Myerhoff Symphony Theater to hear some video game music, played by a full orchestra and 30 voice accompaniment (in my house, you have to think outside the box all the time). The whole family went. But, that beautiful night that saw my aspie son enjoy his first concert, despite the crowds and noise, saw my chronically ill son walk the whole night WITHOUT using the wheelchair, saw my husband sit still and actually enjoy something other than tv, saw us also end up sitting anxiously in the hospital.

On our way out, I heard my sister call my name and as I turned, I watched her fall over and drop to the floor. She laid there for about 15 minutes and then said, I am okay and got up.

She was not okay.

*Sigh* This is hard to write.

The scans showed she had suffered a mild stroke. In fact, before the weekend was out, we would find out that she had suffered one before and three more while in the hospital. Five in total. She is 33.

Her blood sugar was in the 500s.

The doctors looked at her and said, if you don't change, you will die.

There was actually some good news. Each stroke was tiny and left no physical mark. But her memory and cognitive functions have deteriorated.

That was the beginning of change. This is long, so I can't go into everything, but today, she is learning to handle her diabetes. She is on several pills for blood thinning, diabetes and cholesterol. She uses that CPAP, even though the napping has returned after the strokes. She has lost over 30 pounds and is on the good side of 300. She is holding down her job and bought a car. Unfortunately, she still is not treating the depression like it should and is technically homeless as she either works or spends her weekends with us. Her things are still in storage five years later.

I don't know what I want people to take away from this post. This is so hard to write. I continue to stress to everyone, go to doctors. Don't like one, get another one. Treat all of your life, including your emotional one. Be proactive about your health. My sister will always be in danger of a massive stroke that could kill or paralyze her.

But in the end, I think I want to emphasize that depression and possible cognitive disabilities can go undiagnosed and untreated for a person's lifetime. That is what I believe is truly going on with my sister. I stress early intervention for children, so that help can be given early.

And, at the end of the day, we are still taking care of her. She is unmarried with no children. Another member of my little unique family.