GUILTY

There is a phrase called “Paying the price” that someone with CFIDS/Fibro/Lyme Disease/WhateverthehellelseIhave/ is very familiar with. Paying the price comes from illness crimes. It’s very easy to commit crimes against the illness. The most common crime I commit is overdoing it, which results in paying the price. Paying the price means you don’t get to do much of anything for a couple of days because your body hates you and you’re going to spend ample time on a couch or a bed with disturbed sleep and in my case watching a lot of Frasier because let’s get real, Frasier rocks, and promising you’ll never do it again. NEVER! But of course, you do. Because this is life, and you want to have fun. And apparently you haven’t paid a high enough price. APPARENTLY.

Anyway I overdid it this weekend, thus I am paying the price. First of all I traveled. FELONY. I also went to a wedding. MISDEMEANOR. I drank at the wedding. MURDER. Then I went to a Saints Game. DEATH PENALTY. Was it fun? Duh. It was way fun. But now I am couch ridden and very behind in my studies. Tisk tisk. Luckily Frasier is on Play It Now on Netflix so I have plenty of material to keep my sick little mind occupied. I tried going to class and comprehending anything my teacher said but I could only focus on the way she says calcium and phosphate. “Calshium Phoshphate.” She’s from India and her pronunciations keep me on my toes. I left class really foggy headed and dizzy so I’ve been drinking fluids and staying horizontal to try to get back on track. I’m going home this weekend for some TLC and to rest. I am a sucker for peer pressure, and the only thing I get peer pressured into at my parents house is watching Bill O’Reilly, so I should be able to handle that.

I don’t feel like I have a lot to say. So I guess I’ll go now. My anxiety is a little better so that’s good news. Maybe I am just too fatigued to notice it lately. Anyway, it’s 4:30 pm, I’m going to get ready for bed.

Health Happiness and Felony’s

A Story About Death

Let’s talk for a second about death. Because I love it, and one day I’m going to die. And so are you! Isn’t that awesome? There’s something I do sometimes and I encourage other people to do it to: say out loud “I’m going to die.” I do it to free myself when I am feeling trapped– it reminds me that time on this earth is temporary. I think 99% of our lives are spent in either uncousciousess of the idea or denial. It could be an ego thing or a fear thing, but all I know is I’ve always been eager to talk about death but I’m usually dismissed as morbid or depressing. I don’t like to talk about it like “God dude, one day I’m going to die….what’s the point…blah blah blah.” I think talking freely and happily about death can be a very intelligent and healthy conversation to have, it just seems like no one wants to have it.

Well I do. And I realize why I’m like this. I have this very distinct memory of sitting on our back deck in Colorado in August. I was 12. The weather was hot but nice, and my mom and dad, a volumptuous jazz singer named Veronica who sang at our Church among other things, and me were sitting around a patio table sifting through sheet music. You know what we were doing? Picking out funeral music, for my dad’s funeral. He was dying of cancer. Theoretically this is totally depressing. But I’m telling you, it wasn’t! He was in this striped robe, (an awesome robe, I still have it) with his legs folded and laughing and making jokes, and so was my mom and so was Veronica. They set the stage for me emotionally that death is not all bad. They laughed, so I laughed.

My mom and dad sang at the choir in our Church so my dad was particular about the songs he wanted. He didn’t want sad music. And so we played happy music. Beautiful, hopeful, honest music. Veronica sang, and it was perfect. It was just how he wanted it.

So that was my first big experience with death. And I guess being so young and seeing someone that you expect to have around forever slowly leave, makes you examine your own immortality. It’s not so much that I care how I’m going to die, I just worry whether I’m “doing it right” while I’m here. I don’t know when I’ll die, and I want to make sure I’m staying in the moment. I want to be conscious. (Insert some quote about dance like no ones watching )

Wait, that last part is a lie. I TOTALLY wonder how I will die. Not in an obsessive way but out of simple curiosity. Although for a solid year all I did was dream about the possible ways that I would die. There was a lot of falling out of airplanes and a lot of not being able to breathe and a lot a lot a lot of tornados. Ick. Then one day after my health really plumetted in Jaunary of this year I was talking about my fear of death with my mom. Some days I really felt like I was dying, but it had been a fear I’d had for a while. I told her I wasn’t so scared conceptually of it, but I was scared of the pain of it. My dreams were really stressful; I was always closing my eyes and clenching my teeth as the plane went down waiting for the pain to hit me. My mom stopped me and said “Mary, you’re in pain everyday. You’ve been sick for years. Dying can’t be any worse than what you’ve been through?” And then we started talking about how life is the hard part. This is the painful part. Death will be exciting. It will be incredible.

After that I was able to let some of my fear about death go. I still do think about it a lot. I really wonder what is next. If there is a next. (I know there is a next. I know it!) What will it look like. And what will I be without a body? I could go on and on and this is what I think about when I go to sleep so sorry for the death spill on aisle 6, but I just felt like talking about it. Or typing about it.

Anyway I guess I am just hoping that if it’s a week before I die, I can sit outside like my dad did and laugh about my funeral and plan it with family and friends and know that I have loved and I am loved. Those are the things that will outlast me.

So what’s the point in all this? The point is: You’re going to die! And that’s great news! I’m going to die too. And we’ll see each other again, in other blogospheres, in other bodies. But we’ll have all the lessons and love that we’ve acquired while we were here. That’s what I think Heaven is. Something like that.

Health, Happiness, and You’re Going to Die! Smile!

Pay Phones

I still feel shitty today blah blah blah. My legs are all cramped up blah blah blah. The good news is it’s Saturday and all you have to do on Saturday in the Fall is watch College Football and as previously stated, I’m awesome at doing that. LSU vs. Florida, 2:00, woo woo. It really helps that the weather is so sexy right now. It’s like if you’re going to have a migraine, it might as well be in sunny 70 degree weather.

Yesterday my friend Jared and I went for a walk around mid city New Orleans and it was nice. (Again, weather.) And Monty was eager to play. My legs hurt and my headache was in and out but after two large large cups of iced coffee the headache went away and I got a little energy. By this point it was 2:30. I was finally awake. I don’t think I am meant to exist before early afternoon. I’m just not a great person in the mornings. I feel I do better in late afternoons and best at night. I like when the time changes and it gets dark early. It’s like my nighttime greatness doubles!

Can Phone.
.

Anyway on our walk we passed this payphone. I love seeing payphones these days because they’re like this ancientartifact that really aren’t from that long ago but anytime I pass one it never works or the phone has been ripped out. But if you’re really lucky you’ll get a dial tone. It’s like a technological four-leaf clover! So we pass the same one I always pass on the walk to the coffee shop and notice some mardi gras beads on the top. (You’re never ever far in Nola from some carelessly thrown beads.) And a diet coke can was where the phone part used to be. So my inventive friend attached the diet coke can to the mardi gras beads and made a can phone! 25 cents not neccesary! I just know some drunk person is going to come across it one night and totally have a conversation on that can phone and something about that makes me happy.

Then we took Monty to Bayou St. John where he swam after sticks and hopefully didn’t pick up anything poisonous in that very very very very dirty water. He was just having so much fun though, it might be worth the Bayou Flu. I bathed him when we got home at least so my bed wouldn’t smell like the bayou. Yes, he sleeps in the bed with me. Lay off. He’s a good spooner!

So a friend shared this article with me which sums up pretty well what a chronic illness can be like. She nails it on the head about time management. Everything becomes so calculated when you’re sick. It can be shitty, but if you start to look at it as the new way in which to live your life and not an obstacle to see as getting in your way, it makes it a little easier. Anyway her Spoon Theory makes perfect sense and it’s good to know I’m not the only dealing with fibo-myalgia-lyme-chronic-shit whatever. The world is full of sickleys! Health and happiness and can phones.

Crash

I am in the middle of what people in the Biz call a ‘crash.’ Basically my muscles feel like jello, I have pain all over and I can barely keep my eyes open. It’s awesome!!! The only way to overcome a crash is to get horizontal and sleep for however long it takes. I’m on my 5th cup of coffee but if I blink for too long I could be in a deep sleep fast. I just need to hold on a little longer and push through because I have my second anatomy test in twenty minutes. After that, I can shut my brain and my body off and hopefully awake to something a little better.

I knew it was going to be a rough day when I awoke drenched in sweat after a sequence of high anxiety dreams. I pretty much always wake up at some point during the night or in the morning and need to change clothes. It’s really sexy. Anyway my muscle pain is relentless today as it was yesterday. Pretty much the only thing that helps is sitting in a bath, but there is no such thing as a portable bath tub so I’m kindof stuck. Almost through it though. I need to listen so some pump up music like MIchael Jackson. Or Sarah Mclaughlin.

I should be studying technically because I didn’t do so hot on my last quiz and my brain has felt really foggy all week. But it’s like it hits a certain point and then I can’t retain any more information. Sometimes I can’t even speak properly. It takes a really long time to find the right words and my memory? Forgettabout it. I definitely study better at night and I did as much as I could handle last night before seeing double and feeling the fog roll in. I am sitting in the sun on campus hoping it will give me natural energy. I took all kinds of vitamins today hoping it would boost me but basically I still feel like there is something sub-earth which is pulling me downwards. I’d like to kick whatever is doing that in the face. Not that I’d have the energy to BUT STILL. At least the migraine cycle broke. OK enough whining. WHAT ELSE.

My test is on bones and joints. There are 206 bones in the human body. Hmm that is all I can remember right now.This test should go great. I may sleep for the next 3 days, so see you when I see you.

Bloody Mary (Get it? Cause I’m getting my blood drawn and my name is..you get it)

Pins and Needles

Don’t I look excited? I loooove getting my blood drawn! OK so Miami was awesome and we stayed at this beautiful place with a beautiful view and good food. Kindof hard to beat. If I was one of those facebookers that took pictures of my feet and food I would have ALL KINDS of photos to share but I’m not, so I don’t. It always amazes me that people take pictures of their feet, and then post them on facebook for the world to see. It’s like, feet are ugly. Chances are, you have feet. And chances are they’re ugly. There’s a possibility they’re less ugly than the average foot, but that’s the key, they’re not cute, they’re only less ugly. There  was a girl in my high school, I can’t recall her name at the moment, but she had pretty remarkable feet. I always used to stare at them. I’d gaze all longingly at them and then slump my head down and look at my own stupid toes and get really envious. Anyway, I’m lucky my doctor lives in a beautiful place like Miami and not say, oh I dunno, Detroit or like Grand Junction, Colorado. (JK, I’m from Grand Junction. AKA The Junk Yard/ The Junk. Good people, boring town.)

Anywho, the trip was really great for the most part. Execpt for waking up with a migraine every morning, I felt pretty well. I don’t know why my migraine cycle started back up again. Sometimes it happens when I travel, but when I went to Destin a few weeks ago I had not-a-one, so I don’t know what that’s about. Maxalt saved my life as usual. My mom asked me “Can you imagine your life without maxalt?” and the truth was  I had never thought about it. When my mom became ill in the 80’s there was no such thing as maxalt. She’d spend days in bed until it finally subsided or she’d end up in e.r. I am really lucky that for all 2000 of my issues at least modern science allows me to treat most of them. I am very fortunate in that regard and I probably don’t say it enough.

There was another discovery at the doctors office. I have gained nearly FIFTEEN POUNDS since January. It’s really crazy. I did need it though. People were looking at me with Church eyes when I weighed 98 pounds, and I must say I felt less womanly at that size. Now I feel a little more substantial, and that if a cat or small mammal attacks me at least I can defend myself. I’ve never been a fan of the size 0 stick figures that everyone seems to be obsessed with. Plus I live in the South. We like junk in our trunk.

The blood work results will be back in a couple of weeks so until then the doc said to keep up what I’m doing. Speaking of which, I have an anatomy test on Wednesday which covers every bone in the body and I am insanely unprepared. My favorite bones you ask? The clavicles. They’re just fun to say. I’ll leave you with a picture of my view. As my favorite musical artist Lil’ Wayne says “Life is a Beach I’m just playin in the Sand.” PEACE YALL.

Who picked out THIS dump?

Oh Em Gee.

I keep having the most STRESSFUL dreams ever. And it doesn’t help to have a migraine permeating them. Last night was one that I have pretty often. It’s finals week, but in some variation of high school/middle school/church camp. A teacher that taught me in middle school named Mr. Goldsworthy, (whoa, I am just realizing what an awesome last name that is!) is the one who’s final I am unprepared for. He was a really good teacher, but tough. So I am scrambling in the dream because it is made apparent to me that I have not attended one class all semester and there is no possible way I am going to do well on this math exam. It’s crazy stressful. In last night’s dream I was desperate for a calculator but all I could find were those crappy 5 dollar ones you get at Walgreens but what I really wanted was the scientific kind because those things basically do the math for you, y’know? Anyway of course I woke sweating from my eccrine  sudoriferous glands (NURSING SCHOOL WHAT WHAT) with a KILLER migraine. It was a really stressful way to wake up. I did not pack last night. I need to pack. Peace in the middle east.

Miami!

80's Butt Rocker

So my new haircut has me looking like an 80’s butt rocker but that’s OK because… I’m Going to Miami!…(cue Will Smith song.) My doctor/Godsend/Miracle Worker/all that is good and powerful/ is there. It so happens to be that my brothers in-laws live there too so we’re having a little reunion where hopefully I will get some sun with the fam and good news from the new blood work.

When I first had my blood taken there in February we discovered my immune system was four times more active than average and my T-Cells were 1/4 of what they should be. So that had a little to do with the feeling that I might crumple over and die at any second. For that, the doc prescribed immunovir, an anti-viral, which put my pill-per-day number right around 20. Blood work in June showed some improvement but hopefully this next round will show even more. I’m sure everyone is at home just biting their nails at the results so I will report them in a timely fashion. You’re welcome!

Traveling really blows and I always seem to crash hard the day after I fly. (Like, stuck in bed most of the day.) Nola to Miami isn’t so long but it happened last time I made the trip, so the doctor said to drink twice as many fluids on the day of travel and eat protein. Check and check. The best part of traveling is the ginger ale you order on the plane, and the people watching. I wish it were appropriate to wear sunglasses in the airport so I could watch everyone without looking like such a creep. But I’m pretty sure I’d just look douchey with my shades on so I’ll have to pretend to read something. Reading? Ew!

I have to pack. I’m a terrible packer. Let’s see if I can get it right.

Health Happiness and Butt Rocking Hair Cuts!

The Importance of People, People!

There’s something that is harder than being sick, and that is being alone. My mom runs a CFS/Fibro support group in Covington, LA. I’ve been to a few of them. It’s really funny when I go because it’s me and a bunch of old farts. (Just kidding mom!!) While I am by far the youngest person there, age doesn’t seem to matter. We all share something that makes us see eye to eye on a level that most other people just can’t get to. They’re lucky!

The last meeting showed me the other side of the illness, and that is the depression that goes along with it. Beyond our chemicals being screwy and causing depression and other cognitive challenges, there is sometimes a feeling that you’re all alone and nobody gets it. The truth is it’s very hard for people to understand an illness that they’ve 1.never heard of and 2. the only thing they’ve heard is that it’s made up. There is a demoralizing feeling when you see people roll their eyes at your situation, call you lazy, crazy, or starved for attention. I’ve heard it all honestly, and by the end of last year I was so sick I actually stopped caring about people’s perception about it. The truth is I was too weak to take on another battle.

The beauty of that is, I stopped giving my energy to something that in the end, doesn’t matter. People don’t need to believe you. They don’t have to feel bad for you. Those things aren’t going to get you better anyway. Because our energy is so limited, we should choose very carefully to what and to whom we give it. Giving non-believers a smidegeon of it is a waste. I don’t mean that you should ignore them altogether, in fact I think it is good to share current information with people you care about so they can understand a little bit of what it is you’re dealing with. But beyond that, it’s up to them. Don’t focus on changing people’s minds. They’ll end up getting it or they won’t, but that’s not our cause ultimately. Getting BETTER is!

Support groups are a more constructive way to connect with people that you don’t have to convince you’re sick. If you don’t have one in your area, you should consider starting one. I guarentee people will join! Anyway, there is one thing I’ve realized throughout the last year of being very sick. And that is you can’t do it alone. Our egos don’t like to admit that, but it’s the simple truth. For me, my mom was my savior. I am not sure where I would be if it weren’t for her. The last few days in my apartment before I moved in with her, I would be really hungry or really thirsty, but feel too weak to make dinner or fill a glass of water. I know that sounds like an exaggeration but it really isn’t. Beyond that, sometimes the idea of dinner overwhelmed me. Trying to think of all the ingredients I would need to make something, going to the store, even choosing what I wanted would make my already hurting head spin. So I’d eat something random like pickles and maybe some cheese and crackers if I was lucky. I’d never get better that way. On a simple level, moving back in with my mom at the peak of my illness saved me because I started eating healthy meals and drinking water. Having someone there for you is so vital with an illness like this. So if you have someone who is there for you, give them a kiss today. And if you ARE the person that helps, keep it up. Sometimes it’s a thankless job, but I honestly don’t think I would’ve made it on my own. Actually I know I wouldn’t have.

The point is, we’re people. And people need people. And sick people REALLY need people. Just not other sick people, then we’d just be a bunch of sick people going hungry in our own homes. That’s all for now.

Peace Love Health and Happiness.

It’s Fall! I guess.

Today is the first day of Fall. But don’t tell New Orleans that because it still feels like summer here and it probably will for a while. Ew. I guess it’s a little cooler than normal. A little.

How is my health you ask? It’s OK. Thank you for asking. I stopped taking my anti-biotics for lyme disease 2 weeks ago. I was on two of them for six months. The doc says to pay close attention to how I feel, if I begin to decline we need to do a second round of them. Hopefully that won’t happen though, because they’re a pain to take and really wreck your stomach. For the most part I’ve been doing better. Like I can walk and stuff. JK. I like that joke because there was a period in my life (January/February) where walking was actually very difficult. Now I can do it with ease, so that IS an improvement.

I was having a good week until Thursday, my pain got really bad for some reason and I was extremely fatigued. Tried to figure out what I did differently but of course couldn’t really come up with anything. Just made it to my anatomy and psychology classes then spent the rest of the day lying down. Friday wasn’t any better, another migraine and more exhaustion, so I spent yesterday in bed most of the day too. But today I am migraine free. I’m still very stiff and had plenty of nightmares last night as usual, (Like a woman who was going to kill a litter of kittens!) but my neck pain has calmed down. I think the fish oil really helps with that.

The best part of Fall is that you get to spend ample time sitting and watching football on the weekends and I’m really good at that. LSU has a big game today, so I’m looking forward to it. And sitting. I wonder if my community college has a football game today. We’re the Dolphins.

Besides that I’m not doing anything but writing and watching Monty chase flies. Wait, I AM getting a haircut. I love haircuts. I get only 2 a year so I’m excited, as long as she doesn’t SCREW IT UP. Bye bye long hair. OK, off to watch football and put my feet up. They hurt. Duh.