Walk on the Beach 11/14/10

The world always looks better after a trip to the beach, er, ocean. Well, call it what you will. They're kinda indivisible. Ever thought of that? If you go to the beach you go to the ocean, or at least a body of water. In Texas we had a lot of lakes that frequently were better called big mud puddles, but there was always a beach. I frequently camped on the beach and scuba dived in the big mud puddle attached to it. :) Very fond memories.

You can really tell the Snowbirds are back in Florida. There was a lot more trash on the beach tonight; most notably plastic bags that I picked up and threw away. The birds were pecking on them out of curiosity. Some humans are such pigs.

The sunset was gorgeous, of course, but I didn't see any dolphin feeding. The sand was so cold that by the time I had walked the width of the beach to reach the shore my toes were frozen! The water was a little warmer but not my much. I didn't time my walk very well. The time change still has me confused. By the time I got there it was later than I thought so I had to turn around before I reached the pier. But I still got some good thinking in, found 2 really great shells (some obsessions may never go away), found my sense of humor and left with serenity and peace. Life is never perfect, but all is well.

The Two-Day Filter

OK. Putting time and space inbetween "news" and "action" often helps one's perspective. It's been two days since I found out that I may be losing some income and may not be able to make ends meet each month. I've mulled it over and put it through the "outside the box" computer - or whatever that magic thing is that gets me out of these tight squeezes every time I'm in them.

Maybe living in a tent isn't the best "Plan A". I'd love to go back to work part time, but that brings problems all its own. It wouldn't bring in more money, and it might eventually lead to a whole lot less money. Of course, that's not the real problem. I don't think I COULD work. I don't have easy access to sumatriptan right now - and I would need that to work; my back is still a daily painful issue; and I might be putting my insurance in jeopardy and I can't afford to do that. In so many cases it is the government that keeps people on disability, not the individuals themselves. The system is set up so that it becomes impossible to get out of it if you have a chronic illness. Life just isn't black and white like the government would like for it to be... like so many people would like for it to be. Sure, I'd love it if life were clear cut and laid out perfectly but I learned long ago it isn't. I guess it's just another place I don't fit in. (Wow, I'm not in a good place this weekend.)

So -- I don't think going back to work is the answer. I had hoped to when I moved down here, and maybe sometime in the future I can, but not now. NEXT!

What about a roommate? Baaaaaaaaahaaahahahahaha!!!!!! I only want a roommate if he'll fuck my legs off three nights a week and on weekends. Oh, and he has to be a soulmate, too. NEXT.

Sell everything? God knows I'm trying. Well, OK, not very hard. I'm still in the middle of getting all my stuff to Florida. That's why a big part of me is so angry. I had everything where I wanted it here in the apartment and now I have to practically re-situate everything to accomodate the stuff that I really wanted to put there in the first place. Did you get that??? The stuff I really wanted all along was in Greensboro.

I'm looking back at this move and wondering how all this happened... Did I bring this all on myself? Should I have asked for help? You see, I will do just about anything to not feel like a victim. I spent far too much of my life feeling like a victim. So I do the opposite of being a victim - I blame myself for things that might not be my fault rather than blame someone else for things that happen to me. But it feels better to take responsibility for myself and then have it be on me than feel like a victim. Maybe that's why I have trouble asking for help. I don't want to be victimized ever again. And I figure if no one helps me then I'll be responsible for everything I do.

Hmmmm... there's something wrong with that logic. LOL Maybe a little over-reaction to being a victim, huh. Then, of course, there's that perceived reality that no one really cares enough to help me, anyway. That has certainly been proven a couple of times. Again, though, that is also an over-reaction to unforeseen circumstances where people couldn't show up due to various reasons. Well, that, and the incessant belittling from my Ex. [Thank you, Dr. Freud. We now return you to Debi's Blog.]

Bloody hell, where was I? I think I'm going to take this stupid money issue and table it, or better yet sink it during my walk at the beach tonight. If my days are numbered I want to enjoy them. Worrying about this shit isn't going to make it go away or put it off. I want to think about how wonderful it is that I live here at all... how grateful I am for everything I have, and that I don't have a headache today. I have food to eat, if not all my drugs, but fuck my drugs. Who needs them? :) I want to yell across the ocean that Aung San Suu is free - at least for the time being - and feel the gratitude in my bones. When I am cheering up my friends and family I never think of my problems. I would so much rather do that than worry about me. I don't know if that is the path to enlightenment or not. I hope so. It sure as hell makes me feel better, and it seems to make others feel better. However, I DO know that all the "Christians" in my life think I'm going to hell if I try to be "enlightened". But not to worry. I don't believe in hell. :) I DO believe that when we are negative bad things happen, and we must try to be as positive and kind as we can. But that is for another blog... I've got to get back to work on this seemingly impossible task of re-arranging my apartment. It'll get done. At some point.

First, Do No Harm

This was a bad day. It didn't start out that day, but it ended up as one, long adventure in pain.

My insurance, in it's God-Complex-As-Only-An-Insurance-Company-Can-Have, cut me off from the medication that resolves (medical jargon for "gets rid of") my migraines. Apparently due to cutbacks I am allowed 48 shots of sumatriptan each year now, and I have planned my headaches badly. Bad Debi. Bad, bad Debi. Actually, if you think about it, that's 4 shots a month. That's more than I usually use, so I'm not sure what's up with me this year. But the fact is I have cluster headaches, not normal migraines. That diagnosis has probably gotten lost in my paperwork because the sumatriptan now exists and has worked so well for me. OH, AND NO ONE HAS EVER COUNTED HOW MANY DOSES I'VE USED PER YEAR.

I used to live in fear of my migraines simply because I would be in pain for days on end, unable to move, vomiting up nothing, delirious, and alone. Depending on whether or not I was married at the time, I would get so sick that at some point I would drive my idiot self to the ER and either call a friend or take a Taxi home, or my husband would drop me off on his way to work and pick me up on his way home, or whenever. The only way to treat migraines before the late 1980's was pain meds and anti-nausea drugs. Then came Ergotamines. They helped somewhat, but still left you looking like a mummy and acting stupid as a stone.

I took part in the drug tests for sumatriptan. I know I took the actual drug, because within 20 minutes this wave of relief swept over me like I'd never felt before. It was amazing. Life as I had known it was changed forever. Of course, it took years for it to hit the market, but once it did, life was good. In fact, a doctor once asked me if I had a choice to get rid of my lupus or my migraines which would I choose? Without skipping a beat I responded that I'd gladly keep the lupus. This astounded the doctor, as well as me, considering that the lupus was a deadly disease and migraines were not. But I didn't live in fear of lupus; I did of migraines. And now I am back to that way of life because someone - NOT MY DOCTOR - thinks I've had enough sumatriptan this year. In fact, they are so bent on this position that they are willing to pay a hospital to give me the shot rather than have me give it to myself.

So I must play this game until January 1, 2011, though it's no game. It's my quality of life. I offer up, as an example, today's adventure. A 4-day migraine that I almost got rid of last night, but I just didn't quite get it done. So off to my first ER visit in Florida. All is going well. I'm meditating to ease the pain until the shot comes - which as we all know can be hours - and it was... about two. So a nurse walks in with THREE, count 'em, THREE shots when I only needed one: SUMATRIPTAN. She's got the sumatriptan, a pain injection, and an anti-nausea. I appreciated the thought, but the sumatriptan gets rid of all of those immediately so there's no need for the pain and the anti-nausea shot at all. I'm not sure why they were ordered by the doctor, unless this was his first time treating a migraine. Lucky me.

OK, back to my adventure. The problem started when the anti-nausea medicine the nurse is about to give me was one I am allergic to. OOPS. So I point this out and all of a sudden EVERYTHING CHANGED. The atmosphere in the room went thick. Her attitude went from nurse-like to attorney-ish. I asked her if she checked my chart first; I never got a response to that. She kept interrupting me. OOOOOOOOOO... that is a huge pet peeve of mine. I HATE being interrupted. It's rude, and you can't possibly communicate when someone keeps interrupting you. HUGE PET PEEVE. Thus, she doesn't hear most of what I say, and I'm so out of it from the pain that I can't remember most of what she said. LOL - Although, it wasn't funny at the time. I remember she said something like, "I never came close to your skin with that shot." HUH? Who brought my skin into this? Then, "Well, I don't actually have the shot with me." HUH? Then how could you have come close to my skin anyway? This was the way the conversation, er, lecture went. Then suddenly she says she's going to "waste" these three shots and go talk to the doctor. WHAT? She's got my sumatriptan in her hands and she's going to "WASTE" it? I've been in pain for FOUR DAYS, she's a foot away from me with the one thing that will get me out of pain and she's going to "WASTE" it? And that's exactly what she did. She walked over to the red box where you put used needles, put all the meds into the box and walked out.

I lost it. I didn't stop crying for the next 2 1/2 hours. I don't know why, I just couldn't. I stood at the door to my ER room crying those huge, guttural cries, gasping for breath, asking people to send my nurse in and no one would. The entire staff ignored me. I've actually had dreams like this. Being a frequent patient, when others have complete control over whether you are in pain or out of pain it is a desperately helpless feeling. It's difficult to maintain any dignity at all.

I've been in pain with my lupus for over half my life. OK, life sucks. But if I don't have to be in pain I have vowed not to be. Someone else can play Saviour, I'm going to get out of pain. The technology exists for me to be free of pain on occasion and I will take advantage of that freedom whenever I can. More and more the powers that be (the FDA, the government, I don't know who) has decided that pain meds are dangerous. All the scientific data has proven that pain meds are only a danger to people who are not in pain. The percentage of people in pain that get addicted is actually very low, despite the high profile headlines we see. It is only those who aren't really in pain that get addicted. People in true pain don't want the meds when they don't need them because they would rather live a normal life. Pain meds fuck you up. We don't want to feel fucked up. We want to feel NORMAL; and pain meds make us feel normal when we are in pain.

With sumatriptan for migraines pain meds are not necessary. The sumatriptan actually treats the cause of the pain (inflammation of the blood vessels in the brain) and thus the pain is immediately dissipated. Fun, huh. BUT FIRST YOU HAVE TO GET THE SHOT.

My migraine is still present and accounted for, and I've had the maximum dosage I can have of sumatriptan for the next 24 hours. I'm screwed. I don't know what I'll do tomorrow, but for tonight it's just another night of pain with no way out.