Friday, April 01, 2011
Well, this is fun. I've had this disease for 22 years (at least since diagnosis, probably longer) and gained a ton of weight as a result (ok, only 100 lbs). My face changed, my body laid down bone where bone doesn't belong. My endocrine system shut down. As I got bigger and bigger, no one really said anything about it. Ok, whatever.
So now, I'm determined to lose at least some of the weight. I'm down a total of 36 pounds, which proves that it IS possible to lose weight with this disease. Whether I can lose the entire 100 pounds remains to be seen...but it's a goal, at least.
Asking the docs about this, they generally respond by smiling gently and not commenting. In desperation, I asked about bariatric surgery and was told I'd never survive it. Ok. What about diet drugs? Well, you can take Alli, but nothing stronger. Foo!!
So, now I'm combing the SparkPeople website, reading blogs, tips, recipes, whatever I can find to guide me in a reasonably balanced, low calorie diet that won't mess up my blood chemistry enough to make me sick. Upbeat is hard, but we can try, right?
Thursday, March 31, 2011
Well, moody, schmoody!
I'm not BiPolar. My sister is, my daughter is, and my dad may well have been. So does that track a genetic component? Well, I'm not a geneticist, but it does make me wonder a bit.
BiPolar disorder (used to be called manic depressive) is another of those brain-chemical insufficiency situations. It has two components, and both have to be present for a diagnosis.
First, depression. BiPolar people can get seriously depressed, morose, self-critical, self-blaming and even self-hating. For them, it's part of a cycle. Remember that word: cycle.
Second, manic phases. For some these are truly horrible. They gamble away their homes and families, they take drugs, they do any number of things they wouldn't really do otherwise. They feel 'on top of the world' like nothing can stand in their way. An alternative cycle is 'sub-manic', where things don't get quite so 'high'. My relatives do the sub-manic thing most of the time.
The third thing that has to exist is a cycle between the two phases. This cycle is really, really hard to live with. For some, the cycle goes faster under more stress and they can whip in and out of a phase in a matter of hours. It's scary for them, and hard to deal with for us.
What does this mean? Well, around here, a life with little or no sleep, constant exhaustion, a bad temper, and the real belief that stuff's just not worth the effort. What stuff? Any stuff. The down phase can cause overeating, refusing to eat at all, and a lot of other not=healthy reactions. The sub-manic phases cause silliness, high energy, sometimes anxiety.
What can be done? Well, there's the proverbial bucket of drugs one can always repair to. For a family member, we remain vigilant for cycles and try to be supportive. As she learns to recognise them and accept them, we learn ways to mitigate the worst of it. Our move, for example, was carried out in a very controlled fashion so there was as little true chaos as possible, and her things were always where she knew where they were (even more true for her service animal). We helped bring some organization out of the upheaval in her physical space so she didn't begin to feel hemmed in and helpless. We watch the amount of 'just sugar' around here, so she doesn't go into a cycle over too many Reeses Pieces.....
And we do all we can to further research into this sometimes devastating syndrome. There has to be a way to gain better control over it, and to put it in 'social engineering' terms, to cut down the lost time at work, the increase in health care costs. More, much more than that: there has to be a way to cut OUT the human misery caused by a condition we really still do not understand, despite the name-change.
Wednesday, March 30, 2011
I don't know.
When I was younger and diagnosed with "neurosis" I was told that it was all in my head (more on that later), that I was 'acting like this to get attention', and that I needed a psychiatrist.
Hmmm. Many, many years of talk therapy and various drug therapies later, I can tell you what depression is NOT!
- it is not an effort to gain attention. Far from it. When I'm in a real down-swing, I want everyone to go somewhere else and leave me entirely alone. Just the effort to talk to someone, or put on a 'nice' face, or even get dressed, is more than I can bear. Never mind trying to attract attention! And I certainly don't want a doctor mucking in my medication load just then.
- It is not 'all in my head'. I definitely do not make up these feelings. I don't make up the suicidal thoughts and attempts. I don't make up pushing people I deeply love away just to see them hurt.
- It is 'all in my head' if you believe the current medical thinking that the basis of depression is the inability of the brain to produce certain chemicals the existence of which leaves the non-depressed world in a much better, more capable frame of mind. This concept leaves me feeling more helpless than ever. You mean there really is no hope? No cure? Nothing but a bucket of pills every single day for the rest of my life? Man, that's depression-producing all by itself!
Depression IS the single biggest problem in my life. I have a whole lot of health issues...I'll write about them later...but this one really changes my life in ways I simply do not approve of. I want a happy life, full of friends and activities and a real job that I can hold for longer than six months. I want my kids to not have to worry about what frame of mind they'll find me in next. I want a life without all these pills and without the work I do every minute of every day to stay on an at=least-acceptable keel and get through my list of 'stuff to do'...stuff like taking those evil pills, and feeding the cat, and taking a shower. Y'know: basic activities of a day.
Depression IS lack of sleep. Ok, laugh if you want to. Depression makes it hard for me to get to sleep. To stay asleep. To actually rest while I'm asleep (should I write about those dreams?). To not wake up, unable to fall back to sleep, at 4 in the morning..... so, essentially, I'm always exhausted, and all I want is to rest. Which is, of course, impossible.
Believe it or not, I do succeed some days. I make a list every morning of everything I want to get done (some as simple as "brush teeth"!). If I get through the list, it's a good day. If I don't, well, there's always tomorrow...at least that's what I tell myself, and I'd be real pleased if no one disabused me of that notion. I do manage to convey to my family just how much I love and appreciate them, and I do manage to covey to friends that they are cherished friends.
Now, if I could only shed the 'fat girl' label, and find a job....
Monday, March 28, 2011
Blogging is a skill I hope to develop while I'm here. I don't know exactly why, other than it's something I don't know how to do.
So what's happening? Well, we moved to a less-expensive, smaller house. We're hoping we can make ends meet here, where we certainly cannot in the other place. The move is sapping the energy of all three humans in the household. Of course, some of that may be because two of us are depression patients who don't do well with chaos and the third has Pick's disease.
Maybe the Pick's Disease is what I need to write about today. It has devastated us. My husband was once a telecommunications engineer. A brilliant one. He was shy, timid even, and not terribly social. Couldn't really look after himself unless you counted laundry services that would even do socks, and restaurants that knew what he'd order as he walked in the door. But he was kind, and bent over backward for someone he cared about, even jumping to conclusions about luxuries he could give them based on chance comments.
A few years ago, he had three TIAs in a row. Turns out they were caused by Vioxx. After years in a class action suit, he got a few dollars for his misery. We were just glad he was mostly ok.
Three years ago he developed a rare stomach condition called achalasia, in which the valve at the top shut down and wouldn't let him eat. He lost a whole ton of weight before the cause was discovered and life-saving surgery performed. But he didn't bounce back right; kept having swallowing difficulties. They tried other treatments, including botox injections (what a waste, when we both have wrinkles it could have helped...laughs).
Meanwhile, his personality was changing; literally going opposite of what he'd been. Three weeks ago, he was so fearful we had to hospitalize him for his own safety. Well, what they found was that the white matter in the front part of his brain is inexplicably wasting away, sort of looking Swiss-cheesy. More testing showed that he's got "Fronto-Temporal Dementia", or FTD, the old name of which is "Pick's Disease". What will happen is he will slowly become someone he's not, then stop talking or caring altogether. Eventually, he will die. They say 2-12 years on average, but they don't say from what date. From the date we noticed changes? From the date of diagnosis? From the date of a signal symptom developing? What?
It's not Alzheimer's. So, treatment for that won't work. Evidently all that does work is an old-fashioned, 'sedating' anti-depressant so he can sleep at night. Since he won't ever lose intellect (like Alzheimer's patients do), he will be alert and fully aware of what is happening to him til the end.
So part of me wants to know: what the heck did he ever do to anyone that such horror should be visited on him? Who did he ever hurt that Someone needs to retaliate in this manner? Where is the 'fair' in this situation?
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