Author: Mary Gelpi

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.

Feel like I’m dying. Everything hurts and I feel like I need to ralph.Going back to bed. Monty’s having a great time though and the weather is superb.

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.

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.

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!

This is a great song that reminds me of “Death to the Ego.” Can’t stop listening to it…Click here to give it a go, bet you can’t listen just once. It’s like lays potato chips.

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.

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.