Yummy Pred

I've been in flare now for quite a while, as you know if you've read this blog before and heard me complaining about it.

Last week my rheumie doubled my steroid dosage and told me to call this morning if I didn't feel better. I don't. I've gained four pounds, but I don't feel better.

In fact, I feel like I'm wasting my life away, lying in bed without even wanting to read, mostly thanks to ongoing migraines but partly due to fever and other sx's, too. I don't have the energy to *do* anything, but resent not having accomplished anything at the end of the day, as well. I thought I'd accepted my limitations a long time ago, but when they become more restrictive, I still kick at them.

So I call back today and find out what our next step is. Yet MORE yummy pred? Increasing my chemo dose to what it was when I was first dx'd? (That worked, toxic as it was.) Can't put me back on Plaquenil... so we have limited options. I sure hope my divus doctor thinks of something though, before I lose what's left of my lupie mind. The world is getting tired of my excuses, and I continue to be tired of being tired!

Welcome to flare?

Have a nice day.

Deep Brain Stimulation: hope for treatment-resistant illnesses?

An article appeared in my local newspaper this weekend written by Judith Graham of the Chicago Tribune entitled "Deep brain stimulation offers hope to people with treatment-resistant illnesses". I was intrigued.

Basically, it said that deep brain stimulation is a technique in which doctors drill two dime-sized holes in the skull and guide small electrodes into two brain sites the size of tic tacs or small green olives. A battery pack is then implanted at the base of the skull in the back of the neck, and the electrode locations become the targets of pinpointed electricity. The current from the batteries tamps down brain circuits that are firing abnormally or revs up circuits that are underactive, experts hypothesize.

It is already in use to treat Parkinson's disease, but is in trials for other uses, such as treatment-resistant depression, OCD, epilepsy, traumatic brain injury, Alzheimer's disease, and chronic pain. In some cases, the results are little short of miraculous. One patient had been suicidally depressed for four years before the surgery and now enjoys a depression-free life, but it didn't happen overnight. For the first six months he felt nothing and was devastated. The doctors had to tinker with his implants until they got just the right settings. Then he woke up and realized "the pain, the fear and the anxiety were gone".

I know I could live with that. Deep brain stimulation is still considered a treatment of last resort for those for whom conventional treatments have failed, but in the U.S. that includes approximately 2 million depressed patients per year. It is expensive, costing approximately $150,000 per patient. There are potential side effects, as well, including problems related to medical hardware, brain bleeds or hemorrhages, infections, post-surgery seizures and headaches, pain and severe mood fluctuations, reports suggest. Not something to enter into lightly. But after twenty or more years of suffering, if I had the possibility in front of me of being WELL?

I know I have virtually no shot at being included in a trial because of my other medical conditions ... but I sure would take my chances.

Have a nice day.

Managing Cyclic Depression

Most people who don't have clinical depression have no idea how totally disabling it can be. It's easy to say "I'm depressed" when what one means is "I'm sad". They're not the same thing -- ask anyone who has ever been truly depressed. Being sad makes you want to cry. Being depressed sucks out your soul, makes you apathetic, makes you want to die, even when you can look at your life objectively and realize that there is no legitimate reason for feeling that awful. I have looked at my doc when I was off my meds because I was pregnant and said "I just want to die and I know there is nothing wrong with my life. But give me my drugs back and in two weeks I will be fine." And I was. That is depression, not sadness.

I have struggled with clinical depression since my childhood, as my parents did before me, and have taken medication for most of the past twenty years. It takes a cocktail of meds to keep me stable and, for the most part, high-functioning and even content. I am a testament to big pharma. Better living through chemicals. I accept this.

I have "severe treatment-resistant cyclical clinical depression", which means basically that I have it badly, that most drugs don't work on me and that that is why it takes a cadre of them to keep me stable, and that my depression gets worse in more or less predictable cycles. In my case, I can almost post on my calendar in advance that I will have a hard time in March-April and around November, and then I'll pull out of it again to some extent. Various psychs have posited the theory that this is SAD (Seasonal Affective Disorder), but that doesn't make sense, since SAD is linked to sunlight deprivation. If it were SAD, I would be, well, sad from October or November when it gets grey UNTIL March or April when it gets sunny again. I would not be fine from December through February while it's grey. Nope: it's cyclical, and those months are my two downward cycles, more or less.

Does anyone know why? Not that I know of, least of all me. I could make up answers, but that's what I'd be doing. I've had these cycles since childhood.

Nobody I've ever met really understands cyclical depression. All they can do is give me drugs to keep me stable and hope those drugs get me through the two worst periods of the year in relative stability, knowing I will still have a bad time of it for a while. The rest is up to me, and since I've had enough practice, I should be good at it, right?

It does actually help that I recognize the onset now and I know what is happening. I know that the SX's will pass in time, and even about when. That puts light at the end of the tunnel, although the end point may seem very far away, and that is hard. It's even hard knowing I'm coming up on one of them. Does that cause it? I don't think so. I got away without this year's March-April cycle completely, but that was unusual.

What can you do when I'm down? If you are another depressive, by all means share that with me if you're willing to, along with your best wishes and coping mechanisms. I will be warmed to know that someone understands how awful it is.

But realize that you don't HAVE to know how I feel to comfort me. On behalf of all truly depressed people everywhere, I beg those of you who have never experienced this not to believe you know "just how it is" because you were really down in the dumps once. I'm sure you felt bad; I'm sorry. But you still don't have a clue. It does NOT help to tell me just to "cheer up and everything will be fine". This makes me unreasonably angry: why would anyone assume that I'm enjoying this and wouldn't change it if I could? I LIKE huddling in my bed all day with suicidal thoughts, dragging myself out just long enough to drive my kids to school and make sure they're fed? Um ... maybe not? Maybe I'm actually doing the best I can just to keep going at all under the circumstances?

If you want to be supportive of me even though you don't understand why I'm like this, don't assume you could handle this better than I am. I'm not exaggerating how bad things are in MY world: that's the nature of the illness. That's my reality. Instead, bring us a casserole so I don't have to cook dinner, offer to bring my kids home from school one day or take them after school one day, pick up milk and bread at the grocery store when I can't make myself get dressed, tell me you love me (that always helps, even if I can't express that it does). But please, tell me you know how I feel only if it's true.

And please, don't judge me. I didn't choose this. I'm not crazy, I'm depressed: there is a difference. This is a disease with an underlying genetic basis which I got from both parents. Unlike them, I seek professional help and I take my meds. It is not a moral issue, and I would not be well if I'd just "have a more positive attitude" or "more self-control". If you wouldn't criticize a diabetic, don't criticize me. I'm doing my best.

To all of my brothers and sisters out there suffering silently, with or without meds, all year, keep fighting. One day they will unlock this, and we will be free.

Have a nice day?

Life In Lupusland

Tonight I'm sitting here with about two degrees of fever, a very sore throat, joint aches, and severe fatigue, missing my older son's evening baseball game, and seriously resenting it. Most of my discomfort probably comes from inflammation due to lupus flare, though I almost undoubtedly have a strep throat as well. It doesn't help that my rheumie (rheumatologist) promised to call in an order for antibiotics on Friday and didn't, so while I was looking forward to getting better this long weekend, I have to wait it out until Tuesday to call the office back instead.
Generally, I'm the one who's out there encouraging lupus and other AI patients that there is life after dx (diagnosis, to you who are not professional patients). Admittedly, it's never the same as before you got sick, but you can have a pretty good quality of life, if you take good care of yourself and plan your activities carefully.

Not tonight. One of the insidious things about these diseases is precisely that by definition (chronic, incurable), they don't go away. I've lived with mine for over twenty years now; it's not that I don't know what to expect, or how to cope with them. But just every now and then, I get really sick and tired of being really sick and tired. I want to scream "It's not fair!", pound on the desk, demand a better body from whoever handed them out. I want just one single day of being a normal middle-aged woman -- one day without 13 maintenance medications, a need for at least 12 hours of sleep per night, and pain pills . Would that really fix it? Of course not. But it's appealing as all hell anyway.

I know I'll probably wake up tomorrow morning still feeling crummy, but able to go back to accepting my lot: that flares come and go, and this one will eventually go. That I'm never going to get "well" or even better, because I'm past any hope of remission and my health is gradually deteriorating. That I'll be lucky to raise my kids -- I'm lucky I've already outlived my prognosis twice. That all I can do is the best I can do. That means that I can't commit to anything that would require me to be out past about 7:30 at night, because I cave in and have to go to bed around then. And I will resign myself to those things again and be ok. After all, fighting with the facts is pointless and merely adds to my stress, and we all know that stress causes flare!

Meanwhile, I can't help wanting that one day. Me and every other lupie (lupus patient), I bet.

Have a nice day.